Saturday, September 6, 2008 0:07 AM CDT

Last Wednesday, as I wrote previously, I had an unexpected reaction to writing the FDA report about Zach’s experience with a drug that likely caused his cardiac arrests. We completed the first draft of the report by 10:00 am and I found myself in need of wearing sunglasses inside at work to hide my red eyes. Throughout the day I just focused on getting to the next hour and then the next until finally it was time to go home.

It was back to school night. I intended to be there. I wanted to be there -to meet Abby’s teachers and hear about her new classes. I am a parent that actually likes back to school night. But intending and wanting were not enough to overcome how I felt about not only the report but also a back to school night that did not include Zachary and Sam going back to school. I stayed home.

I wanted the day to be over but the day was not finished with me. Wrapped in my blanket from dear friends, a blanket that is essentially a woven picture of the boys, I turned on the T.V. Just as the emotions I felt while writing the FDA report were unanticipated, so too was the comfort that came from that action -from the most unexpected of places - the Democratic National Convention. Now I know that statement is immediately suspect. So let me just say that I am not setting the stage to make a political endorsement, nor am I trying to cloak a partisan message within this story. In fact, in the interest of full disclosure, I am a card carrying Democrat and I love politics.

Having said that, not even I would expect that the DNC to give me pause from my sadness that night. I turned on the television last Wednesday and during a speech I heard these words:

“You know, I believe the measure of a man isn't just the road he's traveled; it's the choices he's made along the way.”

Those words were part of the acceptance speech of the vice presidential candidate, Joe Biden. I thought about not crediting the source, knowing that at times words are immediately discredited if stated by someone of a different political persuasion. Not giving credit would be unfair, of course. So, Joe Biden said those words and the first thing I thought of -immediately -was not political at all. The first thing I thought of was actually a person -Zachary Ryan Juhlmann, the one and only.

I thought how true Zach made those words feel to me. Zach was set on a road, before his birth, called mitochondrial disease, which twisted with progression and turned with devastation as it wound slowly and then rapidly through the years. The road my have been unique and the course unknown, but the road was not what made Zach so special. No, it was the choices Zach made from as early as I can remember that made him the one and only -a very exceptional one and only at that!

I spoke of this at Zach’s funeral. I spoke about Zach’s equanimity – his choice to “be like a promontory of the sea, against which, though the waves beat continually, yet it both itself stands, and about it are those swelling waves stilled and quieted.” (Marcus Aurelius) Zach’s choice to live life, no matter where that road took him, no matter what potholes he encountered, was what made him so unique and inspirational. He did not let the road upon which he was placed erode his soul. Rather he chose to let life affect him only so much as it helped him affect others. He chose to be impacted by his circumstances so that he could impact others. That was the choice Zach made over and over and over again. That was the measure of Zachary.

Since that night I have thought not only about Zach’s choices but also Brittany’s. I thought of her choice to go back to college last winter, her struggle to find the meaning in school, the interest in work or joy in college life…and yet she woke each day, went to school, showed up at work, forced herself not to resign from life, so that now even though grief will always be part of her, she is fully invested in life once again.

I thought of Abby as well. Abby, who makes a similar choice as her sister every day – to walk forward even though she wakes to a house that is far quieter than she ever knew or wanted. I thought of her conscious effort for months to care about things such as friends and dances and Friday nights, things that other kids care about effortlessly. I thought of how I often struggle with feeling so isolated, surrounded by many who don’t understand what is behind the mask I wear. Still…I have friends who talk about my boys and have an awareness that life has been completely turned upside down for me, whereas, Abby is surrounded by friends with a very normal, but nonetheless hurtful, oblivion to her heartache. Abby chooses to stand up in spite of that and find joy. Abby and Brittany’s daily choices are the measure, which far exceeds and overcomes the road upon which they were set.

As always, my children are more likely to show me the way than vice versa. Joe Biden’s words reminded me of them, which reminded me that I, too, have a choice. It’s true that I cannot view Sam and Zach’s deaths as anything less than unjust. It’s especially wrong that Zach died because of a drug company’s lack of concern and the FDA’s lack of the basic funds to do what we ask them to do. It’s wrong that the emergency medical service system was and remains, as a whole, largely unable to appropriately respond to kids like Sam, in spite of first responders who put forth incredible, heartfelt effort. This is, however, the road I am on and it is up to me whether or not I wake up each morning and put forth my own heartfelt effort to do the best I can do. Yes, I may go to bed every night sad and discouraged but I can either wake up that way or follow my children’s lead. That’s the only real choice I get each day

Joe Biden also spoke of his first wife and daughter and their untimely death due to an accident some thirty years ago. “ God sends no cross you cannot bear,” his mother said. “And when I triumphed, she was quick to remind me it was because of others.” Well, I don’t take well to the “God sends no cross you cannot bear” phrase – not very well at all. And yet hearing it that night, it did not bother me as much as usual. (No you cynics –that was not because Joe Biden can do no wrong in my eyes) The reason it did not bother me is because of what he tacked on after he said he triumphed…”she was quick to remind me that it was because of others.”

I’ve never pretended to have perfect faith and I’m not going to start now. I don’t have it all sorted out. I don’t even have a little bit of it sorted out. I don’t know what God sends to us or what he does not. It sure seems to me that some people do have more than they can bear. Not me, though life does feel unbearable at times, but people who are living in situations most of us cannot imagine and will never witness. It seems to me that people who are unsafe, sick, and cold, in pain, homeless, thirsty or hungry do have far more than anyone can or should bear.

Still, we hear stories of triumph every day -improbably someone gets back up and, walks forward. We ask how. We are amazed at the miracle of it all. The answer is all around us. Triumph does not occur in isolation. We reach up and others grab our hands. We stand up surrounded by others. That we have the capacity to bear anything is a mystery to me – that we do so with the help of others is not a mystery but a known truth.

Zach’s choice to reach for the stars every day of life– no matter the circumstances - made him who he is. It was amazing. But he did not do that alone. Zach is amazing! But he was not amazing alone. His triumph, as wise Mama Biden said, was “because of others.” So too, is that of Brittany and Abby. None of us triumph alone.

I did not leave Sam out because he has impacted my life any less than the other kids. It’s just hard for me to know how much of Sam’s complete and utter joy was choice, given his age, and how much was his personality – his wonderful, vim and vigor persona. Either way, Sam was also to be found in the DNC –the convention that keeps on giving and giving. A few of you may know that I have had deep respect for Joe Biden for close to twenty years. True, he loves to talk and gets himself into trouble here and there, but there’s enough substance in what he says that I actually enjoy all his talking. Sam, as we all know, was quite talkative too - perhaps more talkative than Senator Biden. He LOVED to talk.

From the time Sam talked, every time I saw Joe Biden on T.V. I had to laugh. I’d think, and often say out loud, that Sam and Senator Biden were cut from the same mold - talkative, real, fierce, funny, irreverent and deeply compassionate. One time I read an op-ed that said “Senator Biden lacks the speed bump between his brain and his mouth” and I thought, “well, now I finally have the perfect description of Sam.” Sam most definitely lacked that speed bump, which was one of the things that endeared him so to me. It may have gotten him in trouble at times but it was also what made him so very, very real.

The lesson to take from all of this is not that one should watch the Democratic National Convention. The lesson is that we never know when, where or from whom inspiration will come. Whenever and wherever it comes, we ought to grab it and be thankful – even if, depending on your political leaning, it is from a Republican, Democrat or Independent.

---

Friday, August 29, 2008 0:45 AM CDT

Last month Zach’s primary physician and I met with the chief physician of our hospital to discuss how best to handle the situation of the FDA investigation. From my perspective, incomplete and potentially misleading information had been sent to the FDA when they requested records. After discussion we decided that the best course would be to submit a new report – this time written by Peter and I. Interestingly, the FDA ombudsman, with whom I had been in contact asked me the day after we made that decision, “Would the doctor consider submitting a new report?” She expressed the FDA’s concern that they were missing pieces of the story.

Now, none of this is to suggest that anyone intentionally left out parts of the story or sent inaccurate information. It’s, in fact, very understandable given the complexity of Zach’s care and needs. We should have just written it ourselves -the first time - given we are the only ones with intimate knowledge of Zach’s baseline health. We didn’t write it because we were working within the system currently in place at our hospital for adverse drug events – a system that does not include the physician and parent writing the report.

We met Wednesday. I was really looking forward to it because I so wanted to write the report. The FDA representative told me that a very, very small percentage of adverse events are investigated compared to those that are reported. I asked if death was the reason they chose to review Zach’s events. The answer was no – many reports are about death. It seems many people think a drug killed the patient. Most of the time that is not the case. Only when there are serious concerns that the adverse event is related to the drug does the report get flagged for a more thorough review. There are serious concerns about Zach’s experience with the drug he got the night he originally arrested and again the night he died. That is to say - we have the FDA’s attention. That is a good thing and that is why I wanted to get the report done.

We set aside a few hours to write it. Sounds ample but understand that is not as much time as it might seem considering how complex Zach’s medical care is. We knew it was going to be tough to get it done in that time frame and that we’d have to be focused. To make the most of our time I started collecting all the documents I thought we might need to reference. I did not look at them – just put them in files. I was ready.

So there we were, telling the story on paper and finding the appropriate record to give us the supporting information. What was his blood pressure and heart rate at this or that time? Was he bleeding? Did he get this or that med that day? It’s tedious. We wanted to get it right – to provide the information they need but not the information that is irrelevant to the story. Too little and they will not understand. Too much and we’ll lose them. That is why I tried to get everything ready - so we could focus on writing a report that was meaningful and helpful to the FDA.

I found out soon enough that I was not prepared in the least. I was not prepared for the feelings I felt from the minute we started looking at the records. Overwhelmed. Transported into the day and circumstances that corresponded with each document. It was not necessarily the words on the documents. I barely read them.

Simply seeing his doctor’s writing on a progress note hurt, for it was so familiar, and I miss it. We always wrote the daily progress notes together and Zach would interject sometimes…or not. He told us once that he liked to be included but we were pretty boring most of the time -so he played Nintendo, tuning us out.

Looking at a lab result document –pick any one - I could feel my heart drop with the bad ones and remember my hope with the good. A report from the OR - I did not need to read the words beyond the date. What a happy day for he was extubated! There was no evidence of bleeding.

The documents that absolutely crushed me were the code 7 papers. There are five of them. He only coded 4 times, but the first time was so long they needed two papers. Now if you have never seen a code sheet, you may not understand how ridiculous it is that I cried at the mere sight of one. There are few words on a code sheet. At least half is simply a graph on which someone puts dots and other symbols to indicate heart rate and blood pressure. The dots and symbols went downhill. There are also letters. C = compressions (of the heart as in CPR). Everything is in one minute increments on a code sheet. There were C’s all across the paper - minute by minute - and I can remember standing, watching - present but not present. There are places to indicate what meds were given. To see 1, then 2, 3 and finally 4 mcg/kg/minute of epinephrine brought back the fear. One doesn't have to know usual doses to understand that if the ICU doctors have never seen that much epi given to anyone – ever then it is more than a lot. 1 mcg/kg would be a lot. 4 is unheard of. The doctor running the code told me that they were going to have to stop soon and I remember thinking, "over my dead body." It did not come to that for he rallied that time, and the next, and the one after…it seemed he was invincible – hope and luck and God were surely on his side.

I pride myself on my memory. I can tell you all the boys' medicines and doses and when we did what. I can tell you lab values during Zach’s ICU stay in my sleep -tell me the event and I will tell you the lab values that were of concern. Want to know what was in Sam's TPN the night he died? No problem -I can tell you that too. But all of a sudden I seemed to not know a thing on Wednesday. I could not remember when Zach died. What time? Was it midnight? 3 am? I could not remember - and believe me I tried –what happened the night he died. I had absolutely no inkling of how he went from stable to heart arrest. I could see myself talking to the fellow in the hallway but how did we get in the room? Why? What did we do? I could not even figure out what records I should find to help me know what happened.

The complete inability to recall anything just compounded my disconcertion. I don’t wish it on anyone. It was scary. How can a mother, who was standing right there, not remember when her child died or what happened to make him die? In the end the report is thorough. I do need to fill in some pieces before we send it -things I could not recall and could not find. I know exactly what belongs in those spaces now. I am happy to say my memory did come back. I guess it just went on retreat Wednesday morning.

There is a clear statement at the end of our report. In essence it says that the drug was used for all the right reasons and it was used correctly. I agree. It further says that the evidence seems to clearly show that the drug caused Zach’s heart arrests. I agree. Additionally, there is a strong suspicion that the degree of bleeding found on autopsy was drug related, as it was not what one would expect even in someone with Zach’s known bleeding history. And on this too – I agree. Still…it is one thing to suspect the drug may have caused Zach’s death. It is quite another thing to see such a clear statement that in all likelihood the drug did lead to his death.

I cried. I was at work, it was morning, I had a presentation to give and meetings straight through until 5:30. I stopped eventually and pulled myself together but anytime I even thought about it I started crying. I did stay at work. I would not have done that even a month ago and I am glad i was able to block it from my mind for those hours so that I could do that. But as soon as I got in my car that was the end of my bravery…I cried pretty much straight until some comfort came from the most unexpected place. That, you’ll have to hear about next time I write.

I feel as if his death did not need to happen when I look at the conclusion of the report. Then again, I cannot imagine feeling under any circumstances that his or Sam’s death "needed to happen." The cliche here would be, "Yesterday is gone." True - it is. I understand that I cannot go back and redo yesterday. Zach is not coming back. I hate it but know it is true. And then there is the "wrap it up pretty" encouragement: "at least something good will happen now." Yes it might - I have great hope that the report will prompt a black box warning and perhaps hold back a second drug that is about to be approved and has the same concerns.

The reality, despite those very true statements is that understanding I cannot go back and make a different choice and knowing that at least Zach’s experience may help someone else…none of that makes me feel any better. It is a sickening feeling, beyond anything for which I can even begin to find words, to know that my child is not here because of a medication that should never have been on the market without much stronger restrictions. I find it impossible to swallow that my son is not here because it was more important to a drug company that their drug go on the market than to do the studies that should have been done once they saw the problems appear. This was not a trial drug - this was a prescription drug. Cardiac arrest and bleeding were known risks. The manufacturer just chose to play with statistics and got away with it due to the small number of people in their study. No, I cannot swallow that nor that Zach is not here because the FDA lacks the funding to hire the staff needed to protect the public. We blame them everytime something goes wrong but never give them all the tools they need to protect us. This is a systems failure of the worst kind.

Yes… I will have to learn how to move on from this. I will do that - I don't know how but I will. But forgive me if I have a period of time when I am stuck on thinking about how Zach would be here if only …if only a drug company had cared more about the people to whom their drug is given than profit and investors. No, that did not need to happen.

---

Friday, August 22, 2008 4:55 PM CDT

It’s a humid, sunny day -very reminiscent of the weather a year ago. Abby went to one of her really good guy friend’s party. Before she left we were saying that at times we have to remind ourselves that we are not reliving the last month of Zach’s life. As Abby said, for her it is t the last month of his life in a sense. He went to the hospital for the last time on Sept 20th and she had very little contact with him once he arrested on 10/03. For her it was the end the life she knew with the brother that had always been there since the day she was born, 13 months after him. It is hard not to go back a year ago and retrace those steps day by day – they are so vivid.

A year ago we had just returned from San Diego. Flying high. If Zach could go to San Diego for ten days how sick could he really be?

A year ago our dear neighbors moved in across the street. The kids were so excited to see the moving van and I remember feeling so thankful when we met the family that has since become our friends.

A year ago today, when we were just home from SD and our neighbors moved in, Zach and Abby went to the same boy’s birthday party that is having the party today. I watched them go and I could not imagine watching anything more wonderful.

A year ago high school was about to start.

A year ago Zach was taking incessantly about Oct 20th when he would have his driver’s permit and I wondered how in the world we were going to deal with THAT!

A year ago today was the day before Zach’s second to last admission and I was thinking about how I would wring some of our doctors’ necks if they did not coordinate themselves enough to have the care conference that they thought would just get scheduled magically.

A year ago Zach was going to have surgery – scary but not something I truly thought would take his life.

Zach lived three plus months if I count from a year ago today. And yet it feels like a year ago today was the beginning of an end that I did not know was coming. Yet I wonder if I did know it on some unconscious level. Why else do I remember this amount of detail about such every day things as what the kids were wearing or what we ate for dinner? A slow motion movie - I can see it all play out.

A year ago: coming home from vacation, the excitement of new neighbors and a friend’s party, packing for admission and talking endlessly with doctors about the best things to do, hospital discharge knowing we’d be back very very soon, meeting with teachers and starting high school, the terrible fall he took at school and his incredible courage and outlook during the painful aftermath, packing for the hospitalization that I imagined would be long, but never knew would be his last…. I just cannot bear to go past putting the suitcases in the car that day of Sept 20th.

So just as I had to take one day at a time ever since Zach was little, I am trying to remember just one day at a time – just one moment at a time - now that he is gone.

A year ago today Zach went to a party and afterwards this is what I wrote:

His best day at home last week was Friday and that ended up being the best day to feel good. It happened to be the day of his friend’s birthday party, which he had been looking forward to. I am so glad he was able to go. I think that neatest thing for me is something so little that it would be hard to appreciate how magnificent it really is. He went to the party with Abby and came home with Abby.

The friend lives a block away so he rode in his wheelchair with Abby and one of their friends walking. He waved goodbye to me and off they went. I could not count the amount of times Abby and Brittany have waved goodbye and gone off to friends…but Zach never has a chance to say “bye mom” and then independently go somewhere. Is it the safest thing to let him go somewhere with friends? No – of course not. The kid is on a bunch of cardiac drips, narcotics and has a central line with many other infusions. But sometimes the right thing medically has to be over shadowed by the right thing emotionally and socially. This was one of those times.

A few hours later he came home and said he had a wonderful time. It’s a little thing but it is also huge and I am so glad he got a chance to do it.


Now it is a year later and I don’t think there is anything better I could write than the last half of the last sentence - “I am so glad he got a chance to do it!” And I am so glad that he had some terrific friends who continued to invite him to their homes and come to ours when he called, even when his health declined so terribly and he was not as alert or active as he had been previously.

Most of the kids seemed unwilling to put the effort into friendship once they hit 7th and 8th grade and his limitations were much more obvious. A few, however, never wavered and for Zach – who never asked for much from life – that was enough. He felt lucky to have those friends, who most certainly enriched his life. The same could be said for his two sisters - Abby and Brittany. I am sure that it was not always easy for those kids who, aside from Brit, were/are at an age where fitting in matters most. Yet they chose to include Zach, to reach out and find ways to connect with him, which definitely took some effort. I hope they always know the impact and gift of their choice to do so.

Thank you Zach's friends, Abby and Brittany.

~anne

join my Notify List and get email when I update my site:

email:

Powered by NotifyList.com

---

Tuesday, August 19, 2008 7:02 AM CDT

Abby and I came home this weekend. We had a great time in Ocean City, a shore town in New Jersey. It is a place where I spent a lot of time when I was growing up. My family always had a condo or townhouse there as long as I can remember.

Ocean City is a barrier island. It’s only about 7 miles long and perhaps a mile wide. There is a boardwalk, which along with the beach, is the heart of the city in the summer. It was deeded in the 1800’s as a dry town and a dry town it has stayed. Absolutely no public drinking is permitted. Sounds odd but those of us who grew up there love that. No – I’m not a teetotaler but the persistence of this law keeps Ocean City different than so many other shore towns.

The sheer energy and the presence of so many families well past midnight on the boardwalk make it the only place in which I would ever allow my children to go out at 11 PM or to walk home alone. I have no qualms about them doing so when we are there

True, there are liquor stores, bars and restaurants serving liquor over the four bridges that take one back to the mainland. People are permitted to bring liquor to the island as long as it is consumed in their own home. Still, the serious partiers would find it tiresome to constantly leave the island to have a drink.

It’s a pain to drive around town in the summer and I did not have a car anyway. Hence, I walked miles each day – on the beach, the boardwalk and throughout the town. I don’t think I have walked that much since I was in high school without a car. It felt great.

While there we did nothing more exciting then read books, walk on the boardwalk, walk and sit on the beach, hunt for sea glass and interesting seashells, eat amazing quantities of frozen custard and other favorites. I think I had at least 5 cheese steaks in 2 weeks…I always take advantage of their availability since the item referred to and sold as a Philly cheese steak in Wisconsin is something those of us from the Philly area refuse to claim as ours. Perhaps the most exciting part of the trip was the 99th annual baby parade, which is an event like none other. You’d have to see it to believe it.

I’ll be honest and say that I was really scared to go there this summer. I wondered if it was a good idea from the time I made plans until well into the first night we were there. After all, it is the place where Sammy first put his foot in the ocean. That was when he was four and I wondered if he would ever be five. He did turn five and he put his feet in the ocean that summer too.

The day I drove across the bridge with the kids, that first summer, is a day permanently etched in my memory. I remember such a deep, indescribable feeling of “we made it.” Everything for weeks had been focused on getting Sam to the beach and as we drove over the 9th street bridge and the kids cheered I thought how much it felt as if I was bring my kids home.

The day I drove in the other direction, over the bridge, across the bay to the mainland, that second summer when Sam was five, is also a day I will never forget. I did not understand the feeling I had – a feeling of utter certainty that I would never step foot back in Ocean City with Sam. At the time I shook it off. It did not make sense. He was doing okay. A few days later he woke up screaming in pain with his first joint bleed. Never again could he stray from the blood center due to his extreme dependence on blood products.

After Sam died the only place I wanted to be was the ocean. And yet, I could not imagine crossing that bridge to Ocean City without Sam. Going to Bob’s Grill or walking past Playland, orange, plastic boats for sale and feet in that particular part of the ocean – just imagining myself doing those things felt unbearable. I took the kids to Rehoboth Beach that summer. The next we went to the Smokey Mountains and last year I put my feet in the Pacific Ocean while in San Diego.

This summer Abby announced that the place she wanted most to be was Ocean City. I was scared but living has to take precedence over memories and Abby is living. I made plans for us to go. Within a few hours I was overwhelmed with memories. Everywhere I went reminded me of a moment here and a moment there. Zach and Sam seemed to be everywhere, part of everything.

And yet, it was far more comforting than painful. This is another thing I cannot explain but I felt the boys’ presence as I almost never feel it. Strong. Vivid. Alive. Omnipresent. Yes, of course, there were tears every now and then. I wish and wish that death had never touched those boys. But for the first time in a very long time I felt that both boys were with me in all that I did.

It reminded me of how I felt on that first bridge crossing with Sam and the others - that sense of bringing my kids home. There is something about Ocean City that I cannot describe. It is just the certainty when I am there that I am home in a way that I have never been even an hour away from there.

So…I guess this means I finally have my second home. I love Wisconsin and I feel very much that it is my home so no worries about me moving. I may have grown up out east but my kids are definitely Midwesterners and Wisconsin is their home.

---

Monday, August 4, 2008 5:35 PM CDT

"The mystery off geography is that you can both find and lose yourself in latitudes familiar and strange."

The Geography of Love
~Glenda Burgess

I don't have much to update...Abby and I are taking a break for a few weeks. My mom and sister are with us.

Hope to come home and start planning a blood drive to honor the boys and their donors. For now I am doing just as that very pertinent quote says...finding myself, losing myself, in latitudes familiar. More about that in a few weeks.

I gave an interview to Aurora St. Luke's last week about blood donation. It's so easy -just so easy -to talk about about our amazing Blood Center of Wisconsin and the donors who gave Sam and Zach life. Talking about those lives - those wonderful, experience filled lives...it is always an honor.

~anne

---

Tuesday, July 29, 2008 10:38 PM CDT

From Grayson's caringbridge website:
"I am proud to announce that Melissa and Jim have a handsome, new baby boy that they welcomed into this world yesterday, 7/28/08 at 10:06 am weighing in at.... wait for it....

9 lbs. 2 oz and 21.5 inches long

His name is Benson Edward Samuel."

Melissa was a primary nurse for both Sam and Zach. She wanted to give her baby a 3rd name - for Sam. I hope she knows naming a child after Sam Juhlmann is apt to lead to naughtiness and mischief. Of course joy, vim and vigor and sparkling eyes with the mischief are part of that package too.

Congratulations Mel, Jim and Big brother Grayson!!!




Artist on Display

Artist on Display Slideshow

***
Saturday, July 26, 2008 10:55 PM CDT

Many have asked about a website for our little friend Angel, who had a multi-organ transplant last week. Here is an address:
http://www.angelswings708.blogspot.com/

****

My birthday has always been a holiday for my kids - THEY looked forward to it. Brittany and Abby grew out of that as most kids do -though they still treat it as a holiday. Sam did not live long enough to grow out of it. And Zach... well he never grew out of it. I doubt he would have even if he lived much much longer. Last year, at this time, he was planning a surprise party for me at the hospital with the nurses. The day after he was already planning my 2008 birthday. I never imagined - never knew - it would be my last birthday with Zach. My birthday is Thursday. I can't say that I am looking forward to my birthday now that it has been demoted from a federal holiday, worthy of closing down the town, in Zach's eyes.

I always spent my birthday with my kids. Who better to celebrate with than children who delight in what adults dread -getting older? We painted rocks. Yes, I know it is silly but as long as we were home we dug up rocks, washed them and sat on the deck painting them! They made me special food and we ate it all day long. We watched a movie. Disney usually. We lay on the floor and colored in coloring books. My girls still like doing that now and then. We played board games. We had cake and I blew out candles and made wishes. And at night when I tucked them in they begged me to tell them what I wished. That's what I have done during my adult life on my birthday. Whether I had a job or not, whether we were in the hospital or at home, my birthday was a daylong play date.

Paint some rocks with your kids this week or let them make you some thing like toast with melted cheese and lemon pepper (Sam's special). Get out some paper and color with them or take an hour or two to play board games. Sit on the couch - snuggle with your kids if they'll let you - and watch a movie that is all about them. It amazes me how many points I got just for paying attention to (not just watching) a movie they liked. Eat cookies for breakfast and ice cream with your lunch and of course cake for dinner.

*****
Friday July 25, 2008 11 PM

In the ICU…

I wish Zach’s last two months had been spent at home, on holiday, playing games together or making art projects. Still…I had those months with him. Those months taught me so much.

Before Zach went to the ICU I do believe I understood what matters in life and what does not; yet, I came to understand those things even more last fall -by degree over degree. I learned about the strength and love of the human spirit. Zach’s powerful spirit -yes – but that I already knew. The emphasis last fall was the incredible, enduring spirit of the people who surrounded us. I marvel at how nurses, fellows, physicians, pharmacists, blood bank and radiology staff, respiratory and physical therapists and others who loved him were not stymied by emotion; but rather, they were able to leverage it, channel it, and act professionally and so competently during his emergencies as well as day-to-day.

On a daily basis I witnessed a staff that did their best for my son and for countless other children. I watched their faces and eyes and that told me all I needed to know. Rounds were always full of jokes and laughter when he was well and the worry and fear was physical when he was not. I can still see the thumbs up during rounds from some of the fellows, the sheer excitement, (truly), to show me an x-ray or tell me about a lab value that had improved. There was such palpable joy from the nurses when he first had “reactive” pupils – tears were shed that morning -happy tears of thankfulness and hope and relief. There were other tears - the tears every time he arrested and those when he died.

Zach was theirs. He belonged to so many. I said this at Sam’s funeral and it is true with Zach as well. He was never just mine. He grew up with so many of the people at the hospital so that despite some staff entering his world only in the last few months, they knew the stories and beheld the love that had been accumulating for so many years. It was hard not to feel as if one had known him for a long time.

I’m not sure I completely understand what I witnessed. I understood it more with Sam. Sammy was so loud and colorful and his joy and huge laughter just filled a room and drew everyone to him. I think for Zach it was that his spirit just soared -even in the ICU it could be seen and felt so that it was impossible not to be drawn to him, into his life. Although I do not understand exactly what or how it worked -this instant connection between Zach and the people he met -I do understand that he was connected to and loved by many people.

An attending physician sat by my side the first morning. He was not on service. Zach and I knew him only a little. He had saved Sam’s life years ago in the same ICU. He just sat next to me for close to ½ hour and I don’t think we said more than a few words. He quietly watched Zach and I think he could see and feel my fear as Zach tremored more and more. He never said anything but got up and minutes later there was a plan in place to relieve Zach from those horrific tremors.

After he did whatever he did to get the other doctors moving with a plan he made a phone call that I only heard of later. All our 2nd yr residents were at a retreat that day. He called the retreat center and after the retreat was over into the next day, at least ½ - probably more - went to the ICU to see Zach. I always knew Zach was a popular guy with the residents but that was the day I truly understood that he was theirs.

After someone cared for Zach they continued to stay invested in him, long after their shift was over or their week of service finished. “How will I know what is happening to Zach?” a critical care attending physician lamented before she left on an overseas trip. The nurses called and sent text messages to one another if they had a day off or left town. The pharmacists called one another too. “How is Zach?”

Every morning before 7 am Zach’s primary doctor called. Even if he was going to be in the ICU within the next 30 minutes he called. “How is Zach? How was his night?” During the day but most often in the late evening different fellows and residents stopped by. Day after day at least one poked their head into the room. “I’m just checking on Zach,” they’d say. Of course, for after all, he was theirs, too. He belonged to them all.

I watched a fellow sit by his bed for hours after his next to last arrest. I could see how hard he was thinking about what he could do for Zach. I remember thinking, at the time, that he was a modern day picture of “The Doctor” by Luke Field -that famous painting of a physician, deep in thought, with his head in his hands, at a child’s bedside. I sat with a nurse the night before Zach died. For hours, she was reading his charts, searching for answers. The fellow had only provided limited care to Zach during his time in the ICU. The nurse had cared for Zach only twice. But their actions spoke: “He is ours too. We are not going to stop trying.”

There was the day someone asked if Zach left the house when he was at home. The person asking did not know Zach. They did not know Zach as a person with a wonderful life. One of Zach’s anesthesiologist’s did not give me a chance to answer before jumping in and emphatically saying, “Zach is so great! He is just a great, great kid!” In October the nurses decorated his room for Halloween. The doctors joked with Zach about the pajamas he was wearing and the awful things his mom was doing with his hair. They all talked about what they wanted to do when he got better and went back to the 4th floor. His hematologist told him he was a card cheater (their forever joke) and Zach’s heart beat faster. If Zach was awake and heard his primary doctor’s voice -same thing -his heart responded in place of words. Hardly surprising - for Zach knew he was theirs. I am told his heart beat longer than it would seem physically possible. It beat for everyone to whom he belonged. Me, yes. But others too. He belonged to so many.

The day before thanksgiving his dentist stopped by to visit. He said, “I don’t want to go home without seeing Zach.” The day after T-giving his ENT physician, who had only known him sick and in the ICU, stopped by while out Christmas shopping for his own children. I could see how much he wished I was shopping for my girls -for Zach. It was clear to me how much he wanted Zach to wake up so that he could meet the boy about whom everyone talked so much. The dentist had known Zach for most of his life, while the ENT physician only knew him for 8 weeks. Still...he belonged to both. He was theirs too.


That is what I saw in the ICU. That is how I learned that the human spirit has no bounds if we do not bind it ourselves. That is how I learned what happens when a person lets their spirit go where it will go and feel what it may feel. That truly is the power of the human spirit - of love. Imagine what happens when it is multiplied - and connected - multiplied -and connected - and all that power is collectively bestowed on one child.

I witnessed that most of Zach’s life. I witnessed that in the ICU. And because of that - because of what I witnessed, I know that everything that love can do was done. Zach would be here if love could have done more. Sam would be here if love could have done more. For those boys belonged to so many people who loved and I hope still do love them infinitely. Love was never the problem in the ICU.

***

I cannot express how much I miss my two boys. It seems to be growing and deepening as time continues. Today I read about a mom who was at the bottom of a mountain in Italy. Her husand and two children were climbing while roped together. Someone slipped. They all fell to their death. I thought about how she must have felt but honestly I couldn't imagine. I wonder every day how anyone survives the loss of a child. I know many before me have survived and many following will as well - but what I wonder is how?

---

Wednesday, July 23, 2008 9:22 PM CDT

If you have not seen the videos all the way at the bottom...they feature an amazing woman who has written a book for children who are grieving the death of someone they love. Personally, i think it is an adult book too. She is so inspiring to me.

I'm sorry I left everyone hanging. I was so tired last night I couldn't keep my eyes open. Angel is doing well. The breathing tube is out and his pain is relatively well controlled (could definitely be better). Supposedly this is the "honeymoon" phase and 80 percent of kids with a small intestine transplant have some degree of rejection within the first 2 weeks. I hope he is in the twenty percentile. Thank you for all the emails asking how he is doing. I'm sorry I've been an email slacker. anne


MONDAY 8:30 PM: Angel is out of surgery. The surgeons could not close his abdomen so he has goretex covering his new organs. In a week or so they will take him to OR and close his abdomen. He is intubated (has a breathing tube). The most immediate concerns: lots of difficulty keeping him sedated -he has had increases in pain meds and sedation but he continues to wake. Also bleeding is a concern.

Monday morning 4:30 am - Angel is still in surgery - holding steady. Strong and brave Angel held his little brother's picture - clenched it tightly until he was asleep.

***
Sunday, July 20, 2008 9:00 PM CDT

Yes, I know. Three updates in 24 hours is unusual.

It's about our little friend Angel. If you have watched the above blood donation video –you may recall Angel as the beautiful boy with the amazing brown eyes looking solemnly out from the montage. (Sorry Angel but you are beautiful even though I know you can dual with the best of the boys!)

I have known Angel since he was about a year old. He is six now. And the organs he has been waiting for have come. Tonight at 7:30 PM Pacific time he will be taken to the operating room for a 12 or more hour surgery. He is getting a liver, small intestine and pancreas. He may have to get some of his large intestine taken out. This is not a cure - it is trading one set of problems for another. But he is in liver failure. This is a chance for him to live. He cannot live with the liver he has.

Here’s a little information about Angel's family: His parents are Sarah and Nick. Sarah, working in a children's hospital, met Angel. He lived there month after month and finally Sarah and Nick could not stand it anymore. They asked to take him home. Sarah was maybe 21 yrs old. They were just married. They did not even have their own children yet. Everyone told them they could not or should not. But they did and they have continued to do.

Angel went home on IV nutrition and that has not changed in the five years they have had him. What has changed is that he has gone from living in a hospital to thriving at home. In 5 years his wonderful parents have cared for him so well that he has only been inpatient for a total of 30 days – after living almost a year, very, very sick, inpatient before they took him home. He has played, gone to school, made friends, given and received love.

Then in the course of the last few months he went into acute and severe liver failure. His parents have had to make the very painful decision to list him for transplant. In essence making a decision to make him very sick in order to give him a chance at being well. This is a decision no one should have to make.

This is all very complicated for other reasons. Angel has a little brother who is 3 yrs old. Sarah is 36 weeks pregnant – due to have her baby girl in 24 days. This is California where everything is beyond expensive. They are hours away from their home. They need to relocate temporarily so as to be near Angel, while still making payments on their home. Sarah needs to find a new OB as she can no longer deliver at home. They have always been beside Angel and I know they will not stop now. But they are also only two people.

Sarah has been a constant and dear friend to me. And Angel…well he is Angel -a gift to everyone who knows him.

Some people pray. Some hope. Some think and hold someone in their heart and mind. Some pay it forward. Whatever you do when you care about someone's welfare please do that for Angel and his family tonight, tomorrow, and for the next few weeks. For privacy reasons I cannot give out their website or say where they are; however, I will continue to give updates as I can.

And how can I not say that my heart breaks for a family tonight on the other side of the country -on the east coast - who has lost their child due to reasons we do not know. In their grief they donated not one but many of his or her organs so that Angel can live. While organs fly to CA to Angel on a plane filled with hope - a family is mourning on the other side of the country where life will never ever be the same.




SUNDAY MORNING POST SCRIPT:
Um, I forgot the bottom of my post last night. I always write word documents and copy and paste the parts I want to post. It's just a tiny paragraph but I added it just now

Plus signing back in gives me an opportunity to share yet piece of wisdom -from the NYT this morning.

IF ALL YOU EVER DO
IS ALL YOU'VE EVER DONE
THEN ALL YOU'LL EVER GET
IS ALL YOU EVER GOT

It was used within the context of Friedman’s op-ed about our response to the energy crisis; however, it reminds me that life is not meant to be stagnant - nor is it meant to be a passive affair. I’m no Pollyanna by any means. Some days are tough -just really hard – and this past month has been extraordinarily difficult. The above words, however, remind me that in a general sort of way I should find myself a little smarter, a little kinder, a little more charitable and compassionate and a little more humble at the end of the day. It would be a sad thing, after all, to find myself exactly in this spot twenty years from now –with only what I have today. Zach and Sam did not stand on the sidelines letting life happen to them, beat them down. Nor do Brittany and Abby. And neither should I.

*******************
Saturday, July 19, 2008 10:50 PM CDT

My friend Leslie sent me a link to a story she saw on NBC news a few nights ago. Leslie, if you do not know her, is mom to Morgan who passed away about 18 months ago. Morgan was two and she was born with a mitochondrial disease. I met Leslie in Atlanta when Morgan was still here. Zach was still here too - in fact he was with me. That seems like several lifetimes ago.

The story for which she sent the below links is about a mother who had a child named Sargeant who passed away due to mitochondrial disease. Sometimes it feels like an entire universe of children has passed away from the horrific diseases we collectively refer to as “mito.” After Sargeant’s “body died,” as Zach would say, his mother sought to help his brothers feel secure that their little brother was and is safe. The result is a beautiful book for children.

The book reminds me very much of a book that the first graders at Bethesda Elementary made for me after Sammy passed away. They each drew a picture of where they thought Sam was or a favorite memory they have of him. The pictures were all put into a book for me, which someone brought to the funeral.

Have I ever said how much I cherish and love that book? I think I have but not in a long time. Typically it is sitting on our coffee table. It is one of the most comforting books I own. It makes me cry a little but mostly it makes me smile and it gives me some peace - often so hard to find. Sam is guarding the baby angels in heaven. He is without any tubes or "lines." Sam is with dogs and he is often eating french fries or playing blocks. He is always smiling and laughing. There is a lot of orange in heaven and Sam likes that. One day I will scan all of those pictures and post them.

Sargeant's Heaven (the book featured) fills such a need. After Sam passed away I wanted to buy some books for Josie - his best friend - and some of the other children. But there is so little out there. A few things that explain too much, try to tie it up too neatly, and I am unsure they answer the real questions kids have. Where is he? Is he happy? Is he having fun? My friend, Janet, brought me "Mommy please don't cry" the day after Sam passed away. That is one of the few books for children and it is a wonderful book. Janet's daughters read it to the hundreds of people at Sam's funeral. Whether or not adults know it, they really need to hear what children need to hear. At least I do. He is safe. He is happy. He is having fun.

...And now the word “they” has replaced “him”. Still...I need to hear it all the same. They are safe - happy - having fun. Most of all I need to know they are together.

The other things you will see in the video link are invisible and yet still seen. Hope. Inspiration. Courage. Icy Frantz, author and mother, really spoke to me. She said two things that I could have said. I paraphrase:

1) When you have a child who is sick you wake up every day and know you have a purpose. Everything else falls in its place.

2) It was an extraordinary thing to watch humanity at its finest -to watch so many come together to help one little boy.


It is true - I absolutely never doubted my purpose when Zach and Sam were here. They needed me so completely and in such basic ways. And I loved caring for them. I was watching the DVD from Sam’s funeral yesterday. (For the very first time -that’s another story.) I gave his "eulogy" if that's the right word. I talked about how everyone always said how hard it must be to take care of him or how they admired me so much for all that I did. I said that I may have been tired but it was never hard for me to take care of Sam. I honestly do not recall a single time thinking it was a burden. In fact taking care of Sam was easy in a sense and such a wonderful privilege. The same could be said for Zach. I'm unsure how admirable I can be given I got so much more out than in.

( I do want to say that I don't think it is wrong when parents do have those sentiments from time to time. I can’t say why I didn’t but I know it is extremely normal to feel burdened some days. I truly admire the many parents I know who can be so honest and open about this.)

And it is also true that one of the most extraordinary and unexpected gifts of being the boys' mother was watching humanity at its finest unfold in front of me. An absolutely incredible and at times miraculous thing it was and how lucky I was to have a front row seat. The people in their lives - directly and indirectly - did amazing things together.


So here are the links. Let me know what you think of it if you watch it.

This is their website with the book and pin.
http://www.sargeantsheaven.com/

1) This is the actual newscast as it was seen on NBC



2) This is the web only version - I guess it is the parts cut out of the news.

---

Tuesday, July 15, 2008 927 PM CDT

Zach's nurse Hope had her baby today. Stella is 7.5 pounds and I hear she is a cutie. Mama and baby are healthy. Congratulations Hope and Tom!

This morning I wanted to forward the message I received about the baby to a few people that know Hope. I typed in "juhl" so that I could put Brittany's address in. Zachary's email address popped up. I wanted to send that email more than anything to his email of Batmanx92@yahoo.com
So like a lunatic I did, in fact,send it to his email even though he probably knew about the baby before I did.

Today: so many reminders of how life continues. This is good of course. Life should continue. But it is terribly hard to see how life changes and people move on and all of that newness does not include Zach and Sam. Someone very inadvertantly said something today that conveyed that they do not consider me to be a mother of children with special needs. I just wanted to shout and stamp my feet that I was a mom and I was a good mom to my boys. I am still their mom. The words were not in any way intentional - perhaps I even perceived them wrong; yet, I felt as if life had passed me by while I was not looking. I think I am too young to be having those feelings but there are days I feel so extremely old - as if two hundred years have been chained to my ankles.

***
I have not said a lot about blood donation lately but it is never far from my mind. Blood supplies are low. It's summer. They are always low.

If you have donated previously and it has been a few months please consider taking an hour to donate in the next few weeks.

If you have never thought about the need and impact of blood donation, perhaps take some time to look at the "how to save a life" montage above the journal entry. My little friends Brody and Angel are waiting for organ transplants. Brody has a mitochondrial disease and has been waiting 2 years for a liver, intestine, stomach and pancreas. Angel needs a new liver. Both boys require blood fairly often. They are just two of the thousands and thousands of reasons to donate blood. They are two reasons who are very precious to me.


Kathy, who sent me the Dancing 2008 video, looked up the Tagore poem that was set to the beautiful music you hear. The poem is equally beautiful.

anne

p.s. Nena,you can have this too if you want!

Stream of Life

The same stream of life that runs
through my veins runs through the world
and dances in rhythmic measure.

It is the same life that shoots in joy
through the dust of the earth into
numberless blades of grass and breaks
into tumultuous waves of leaves and flowers.

It is the same life that is rocked in the
ocean cradle of birth and death, in ebb and flow.

My limbs are made glorious by the touch
of this world of life.

And my pride is from the life throb of ages
dancing in my blood at this moment.

Rabindranath Tagore


Sunday, July 13, 2008 10:27 PM CDT

Put a few new pics in the photo section. I need to resize them still.
_______
We have had neither thunder nor lightening – not to mention the absence of rain. That is always a good thing. The weekend weather was absolutely perfect.

I have lots to “show” and hope to get the pictures up this week. A wonderful gift today from Zach’s teacher and her husband as well as all the other pictures I have promised in the last week. I really will download those this week.

A funny headline in the NYT this morning: “The City That Never Sweeps.” Of course it was a story about the street sweepers in NYC but it certainly reminded me of Sam – “I can’t SWEEP without my best bwother!”

How about something to make you smile? My friend Kathy sent me a link to this video – you may have seen it. It is quite the sensation. Below is an excerpt from the NY Times review. Then watch the video and I guarantee that even if you don’t dance, you will smile. We have more in common with our fellow humans in Iraq, Pakistan, Korea, London, Brazil, the Bronx, and Milwaukee than we choose to think about most days. I love this video because it is a vibrant and real and inspiring.

Excerpt from A Private Dance? Four Million Web Fans Say No by Charles McGrath, July 8, 2008

However you interpret it, you can't watch "Dancing" for very long without feeling a little happier. The music (by Gary Schyman, a friend of Mr. Harding's, and set to a poem by Rabindranath Tagore, sung in Bengali by Palbasha Siddique, a 17-year-old native of Bangladesh now living in Minneapolis) is both catchy and haunting. The backgrounds are often quite beautiful. And there is something sweetly touching and uplifting about the spectacle of all these different nationalities, people of almost every age and color, dancing along with an uninhibited doofus.

By the way - the beautiful song you hear can be downloaded from iTunes. Just put Palbasha Siddique and/or Praan into the music store search engine.


Where the Hell is Matt? (2008) from Matthew Harding on Vimeo.

---

Friday, July 11, 2008 2:50 AM CDT

Live in the sunshine, swim the sea, drink the wild air…
- Ralph Waldo Emerson


Sammy was scared of thunder and to a lesser degree lightening.

Truly and profoundly scared.

I remember the first time it rained after he passed away. I could not find comfort. What if he was somewhere terrified, calling for us and we were not there for him? It haunted me.

To a certain extent that feeling has never left. What if he is scared? What if he needs me?

We have had particularly loud thunder tonight - lots and lots of lightening. The tornado sirens went off earlier. This is the kind of night Zach would love. He’d be so mad if he slept through it. Usually he did…but that was only after Sam died. Never before Sam died -for at night Sam woke up crying. Zach quietly talked to him – “Sammy it will be ok. Sammy don’t be scared.” Sometimes Brittany was still awake when the thunder woke Sam and she’d go into his room and soothe him. If it was daytime, he often clung to Abby – so tightly. I would snuggle with him, hold him, tell him he was safe. But every time the thunder was loud he’d scream and jump. He was truly terrified.

There was one night when we had a particularly bad storm, through which I had to drive. It was an admission night at the hospital. This was a time when Sam lugged his two doll babies around – Baby Abby and Baby Sammy. He was strapped in his car seat next to Zach sobbing as we drove. Every time he saw lightening he’d say, “my babies don’t like thunder Mama. My babies don’t like thunder!” Later in the hospital Zach said, “Sam there really is nothing to be scared about. See, I’m not scared.” Sam, three or four years old at the time, looked at Zach and said, “Zach – my babies don’t like thunder.” He never tried to pretend even when he got older. It was simply a fact – “my babies don’t like thunder and I don’t either.”

I wonder…does this feeling ever go away? Worry is not the right word – it is a more terrifying feeling than that. Sometimes I can think of him as safe in heaven with Zach. But so many times I wonder – where are they? And with Sam I am so frightened that he is scared. Is he cold? He hated being cold - and would call for me to wrap him up in blankets lest he “turn into an ice cube.” Who will put blankets on him tonight. I know it is irrational. I try to picture them together. Even if Sam is still scared, Zach is there, taking care of him. He has climbed in bed with Sam, covered them both up with blankets and they are talking about Justice League and other important things.

But the thunder is loud. The lightening woke me up and I am scared that Sam is alone calling for me. This is one of the things I hate most about death. The gulf between us –between what was and what is, between heaven and earth feels as if it will swallow me.

18 months ago I stood at the children’s memorial services– before I lost Zach – and spoke of grief and hope. One of the things I said:

On his death bed, the poet Ralph Waldo Emerson was heard to say “oh my beautiful boy.” The beautiful boy Emerson lamented was his son who has passed away 40 years prior. In that one phrase - “oh my beautiful boy” – it is obvious that both his love for his son and his pain at losing him were intricately woven into every moment he lived, part of who he was until the very day he died. Like Emerson, it will take an entire lifetime to cry, to mourn and to miss our children– but also, an entire life to remember and be inspired by their lives.

Those four words are exactly the cry of my heart. I could not sleep tonight – could only think “oh my beautiful boys” over and over. I look at their pictures and Zach’s clothes still in the suitcase from the hospital and sometime it is just so overwhelming – “oh my beautiful boys.” The loss of them is absolutely woven into the fabric of my life. Unshakeable. Undeniable. Unending.

Still… I think of all the great things Emerson did. How everlasting his written gifts to humanity are. One reads some of the things Emerson wrote and knows his son must have been his inspiration. I am quite sure that like me, Emerson got up each day in no small measure to honor his son – to live life and give to others for the son who could not. Ralph Waldo Emerson gives me hope. Hope that like him, I will die with my sons still as much part of me as my girls who are here with me. Hope that their lives – my beautiful sons lives -will always inspire me.

Friends who lost their son in September to a rare bone marrow failure sent me the most amazing present last week. I will post a picture of it this weekend (along with the promised cemetery picture). It is a blanket but it is so much more though you have to *** see *** it to understand. I am going back to bed now with that blanket and with hope that my beautiful boys are together -somewhere without thunder or lightening – snuggled up together watching one of their favorite movies.

Some of my favorite Emerson quotes…and these are just a few. His essays …well read them sometime if you have never done so.

***

To laugh often and much; to win the respect of intelligent people and the affection of children; to earn the appreciation of honest critics and endure the betrayal of false friends; to appreciate beauty; to find the best in others; to leave the world a bit better, whether by a healthy child, a garden patch or a redeemed social condition; to know even one life has breathed easier because you have lived. This is to have succeeded.

***

I expect to pass through this world but once. Any good therefore that I can do or any kindness that I can show for any fellow creature, let me do it now. Let me not defer or neglect it, for I shall not pass this way again

***

And a poem I have posted before….Threnody. This was written for his “beautiful son,” Waldo after his death at the age of five from scarlet fever. The poem is quite long so I have only posted some of its many verses.

Threnody

The south-wind brings
Life, sunshine, and desire,
And on every mount and meadow
Breathes aromatic fire,
But over the dead he has no power,
The lost, the lost he cannot restore,
And, looking over the hills, I mourn
The darling who shall not return.

I see my empty house,
I see my trees repair their boughs,
And he,—the wondrous child,
Whose silver warble wild
Outvalued every pulsing sound
Within the air’s cerulean round,
The hyacinthine boy, for whom
Morn well might break, and April bloom,
The gracious boy, who did adorn
The world whereinto he was born,
And by his countenance repay
The favor of the loving Day,
Has disappeared from the Day’s eye;
Far and wide she cannot find him,
My hopes pursue, they cannot bind him.
Returned this day the south-wind searches
And finds young pines and budding birches,
But finds not the budding man;
Nature who lost him, cannot remake him;
Fate let him fall, Fate can’t retake him;
Nature, Fate, men, him seek in vain.

I hearken for thy household cheer,
O eloquent child!
Whose voice, an equal messenger,
Conveyed thy meaning mild.
What though the pains and joys
Whereof it spoke were toys
Fitting his age and ken;—
Yet fairest dames and bearded men,
Who heard the sweet request
So gentle, wise, and grave,
Bended with joy to his behest,
And let the world’s affairs go by,
Awhile to share his cordial game,
Or mend his wicker wagon frame,
Still plotting how their hungry ear
That winsome voice again might hear,
For his lips could well pronounce
Words that were persuasions.


Now love and pride, alas, in vain,
Up and down their glances strain.
The painted sled stands where it stood,
The kennel by the corded wood,
The gathered sticks to stanch the wall
Of the snow-tower, when snow should fall,
The ominous hole he dug in the sand,
And childhood’s castles built or planned.
His daily haunts I well discern,
The poultry yard, the shed, the barn,
And every inch of garden ground
Paced by the blessed feet around,
From the road-side to the brook;
Whereinto he loved to look.
Step the meek birds where erst they ranged,
The wintry garden lies unchanged,
The brook into the stream runs on,

But the deep-eyed Boy is gone.

Was there no star that could be sent,
No watcher in the firmament,
No angel from the countless host,
That loiters round the crystal coast,
Could stoop to heal that only child,
Nature’s sweet marvel undefiled,
And keep the blossom of the earth,
Which all her harvests were not worth?

Perchance, not he, but nature ailed,
The world, and not the infant failed,
It was not ripe yet, to sustain
A genius of so fine a strain,
Who gazed upon the sun and moon
As if he came unto his own,
And pregnant with his grander thought,
Brought the old order into doubt.
Awhile his beauty their beauty tried,
They could not feed him, and he died,

Some went and came about the dead,
And some in books of solace read,
Some to their friends the tidings say,
Some went to write, some went to pray,
One tarried here, there hurried one,
But their heart abode with none.
Covetous death bereaved us all
To aggrandize one funeral.
The eager Fate which carried thee
Took the largest part of me.
For this losing is true dying,
This is lordly man’s down-lying,
This is slow but sure reclining,
Star by star his world resigning.

O child of Paradise!

Hearts are dust, hearts’ loves remain,
Heart’s love will meet thee again.

---

Monday, July 7, 2008 6:33 AM CDT

Typically, I do not listen to country music. Last night, however, a friend of mine sent me lyrics to a song called "Angels in Waiting" by Tammy Cochran. Tammy's 2 brothers passed away from cystic fibrosis. The song is for them and about them. I put the link below for those who want to hear/see the song. The lyrics are below the link.

If clicking the above button does not work then you can copy and paste the below address into your internet browser.

http://www.youtube.com/watch?v=wv4aPwf32Ik

ANGELS IN WAITING
by Tammy Cochran

We camped out on the living room floor
In our old sleeping bags, by a make-believe fire.
In a tent made of covers, we talked for hours
My two brothers and me.
Keeping the faith; racing with destiny.

They were angels in waiting.
Waiting for wings to fly from this world,
Away from their pain
Treasuring time, til time came to leave,
Leaving behind sweet memories.
Angels in waiting; angels in waiting for wings.

They always knew theyʼd never grow old.
Sometimes the body is weaker than the soul.
In their darkest hour, I made a promise
I will always keep:
Iʼll give them life; Iʼll let them live through me.

They were angels in waiting.
Waiting for wings to fly from this world,
Away from their pain
Treasuring time, til time came to leave,
Leaving behind sweet memories.
Angels in waiting; angels in waiting for wings.
Angels in waiting; angels in waiting for me.




Friday, July 4, 2008 11:33 PM CDT
Quite a few people have asked me what is happening with the FDA investigation. I am sure the information is confusing and boring to some. So it is at the of this journal entry so that one can more easily skip it if they want to do so.

I know I have not written lately. I have been at a loss for words. I could write about how sad I feel but most of the time I do not even have the will to expand on that beyond reiterating over and over - “I am so sad.”

I’ve been working a very little bit on a website for the boys. It will be for the non-profit that I want to start in their memory. I am nowhere near to being organized enough to have anything in place for that yet. So initially I am just trying to get it up and running. That in and of itself is difficult for many reasons. It’s time consuming, emotionally difficult and there is a learning curve for me given I have never set up a website like this before.

The website will have information about the foundation’s mission as well as a place to honor the role of so many others in their lives. I realize that I am giving rather elusive information…. for now that’s the best I have because I am still thinking this through. When the website is at a place where I can share it, I definitely will. For now it is under some pretty heavy-duty construction.

It is the 4th of July today. I did not dare go downtown near the parade. I am not sure I can ever go there again and watch children grabbing candy. Fortunately, Abby does not care. If she did I would force myself to go and find a way to be okay with it; but as I said – she does not care about the parade. As parades go – it is not special. It was simply special because the kids looked forward to it each year.

My dad visited today and he, Abby and I went to the cemetery in the afternoon. What a surprise! Had I listened to voice mail I would have known what I would see - but I am glad I didn’t listen.

Kent and Julie planted a bunch of annuals and perennial flowers -orange for Sammy and purple for Zach. They put rocks around Zach’s garden just as I had for Sam. Julie washed Sam’s stuffed animals. They are pretty faded so I think I’ll look for new ones that are brighter orange. Having said that, they needed a good cleaning and now that Julie did that for me they look so much better – despite the fading from the sun.

I cannot possibly explain how perfect everything looks. Instead, I will bring my camera out there this weekend and simply post the pictures. Kent and Julie –I hardly know what to say. Thank you so much for making it so beautiful for the boys.

I walked around the cemetery today. I think I have said this before - there are few graves in Sam and Zach’s section that are for a person more than 50 yrs old. So many are children and young adults. It is almost unbelievable.

There is so much love and it is ever clear during these months when it is not snow covered. So many colored flowers – representing so many different favorite colors. Countless items – for Sam it is Buzz Light Year and Curious George and for Zach there are Star Wars ornaments and elsewhere in that section there are the things that hold meaning for each person.

Every grave is well cared for. I believe that is why the curator is not strict as is the case with virtually every cemetery. If people left things for years or did not weed their own flowers, he’d probably enforce rules. But there is truly not one site that looks anything but well cared for.

Later in the afternoon we went to my neighbors for a little backyard get together. It was good for me to get out. It always is even though I did not feel I would be able to stay there more than an hour. I ended up staying for a long time. It was so nice to talk to everyone. Our neighborhood boys - like most boys are – were so excited as the sun got lower and the sky got darker. They had big plans for lighting up the neighborhood with their fireworks.

How Zach would have loved this 4th of July. He always enjoyed the day; but last year he could not go to the city fireworks and that was disappointing for him. His broken back would not have tolerated him sitting on the hill to watch. I cannot imagine how perfect he would have thought today was…. to have boys his own age, exploding things -an activity he so loved – right in his own cul de sac.

How perfect it would have felt to him – to not be left out when all the kids went to our city fireworks – because this year there were kids staying home like him, creating their own show. And Sam…. I can just see him sitting on the porch, cheering big brother Zach and the boys on, coaxing them to make bigger and louder explosions, hoping that perhaps they’d light a few bombs in the process.

I don’t begrudge these moments for other families. I truly don’t. And actually I like being around kids - even if they do remind me of my boys. But I did have to leave after the fireworks started in full force. The image of my boys there, in the midst of things, was just too strong and painful.

Still, as I have thought about it, I think perhaps it was such a strong image – so real -because they were there. And if they were, I know they did not come home with me. They stayed and enjoyed every minute of their friends setting off explosives.

Happy 4th of July Zach and Sam! Mama misses you both so much!


**********

FDA
At this point I am so unaware of what the FDA is doing or not doing. I did email with an ombudsman last week and if I do not get where I want to be with that then I will go to my senators.

I expect communication with my son’s physician as to the status and outcome of the investigation. I keep hearing “but we don’t do that.” Well is there a law that the FDA can’t? No, of course not. In the absence of that I could care less what they usually do.

There is absolutely no reason that they can come up with for not communicating about the outcome of the investigation. They don’t have to talk with me but they can talk with Zach’s doctor as far as I am concerned.

I do not expect anyone to say the drug caused Zach’s death. I do expect the information to be used in order to make future decisions – both at the FDA level and at the practice level.

The FDA did call a meeting last week about a drug that is in the same class of drugs as the one Zach received. It was called with such short notice that they could not even give the required 15 days notice. That is only permissible if meeting is considered “urgent and a matter of public safety.”

The public notice said: “The purpose of this meeting is to obtain guidance on how best to approach products such as tolvaptan where efficacy has been demonstrated by a change in a laboratory value and not via a clear improvement in clinical outcome.

I thought it was interesting that the purpose mentions “products such as tolvaptan. ” Tolvaptan is not even approved yet. The only other product “such as tolvaptan” that is currently approved in the U.S. is the one Zach received - Conivaptan.

So they could be talking about the Conivaptan - and indeed it is mentioned throughout the FDA written reviews that have to be posted due to the Freedom of Information Act. (Without that law I would not know any of this.)

I also noted that they mentioned many times what you read above in the purpose – there is not a “clear improvement in clinical outcome.” In other words -we’re not sure it helps.

Worse, in reading the documents it is clear they are also unsure that the benefit "justifies the risk." Several reviewers said they had significant concerns. They are seeing more death in people who have heart failure and get the drug compared to people with heart failure who do not get the drug. There is also a suggestion, though they need more information, that it causes bleeding.

I wanted to scream -why didn’t you call this meeting last year when you saw the same concerning results with the drug Zach got? Why didn’t you think it was a matter of urgency and public safety then?

Well as it turns out, the reason my be that Zach’s drug was approved under the advice of a different committee. For some reason Conivaptan went through the endocrine committee and not the committee that looks at drugs for the heart and kidneys. The FDA apparently re-evaluated that and it has been switched over.

I wonder - if the drug Zach got had gone through the cardiovascular-renal committee (heart and kidney committee) -which is obviously more appropriate – would it have been approved? What if reviewers who actually understand heart failure could have provided the advice and made the recommendations about labeling?

I'll never know. For now I would settle with knowing what they have done and will do regarding the investigation.

I share this information primarily because it is about something that happened to Zach. I know people care and what to know how this unfolds. Secondly, I think it is important for others to understand how the FDA works and how careful one must be with new drugs. So I'll continue to post what I know about the FDA - if I feel it is not going to hurt anyone.

On the other hand I am not comfortable sharing about how the adverse event is handled locally. This is not because it is being ignored so I want to be clear about that. The reason is that I feel sharing details has too much potential to harm and hurt. And taking that risk is simply not justifiable even if it does raise awareness about drug safety. It simply is an inappropriate use of Caring Bridge.

That brings me to something I have felt more and more strongly about in the last six or so months. I’ll apologize up front for the tangent. I am actually writing for many people who I have talked to lately. People who feel concerned about websites such as CB or other types of blogs and how they are being used:

Caring bridge (CB) is being used, by some, to negatively communicate with others. The writer has a good idea that either the person they want to speak to is reading or that someone reading will communicate the message to the person. And so it becomes a way to say those things that I don’t believe would ever be said one to one. CB was not created as a passive aggressive vehicle with which to insult and chastise people or to make a person feel guilty. It was created to build community -not tear it down.

The premise I operate under is that if someone is reading the site they care – whether it is someone well known to me or someone I have never met. Because really – who would else would read it? Our lives are simply not that fascinating. No one would read the site it if they did not feel, however marginally, invested in the boys’ story.

CB was created as a way for someone to tell stories that range from heart breaking to joyful and inspiring. However, it was not created to tell someone else’s story -not without explicit permission. CB and for that matter all blogs are either very public or somewhat public. There may be security on a site but that security is imperfect. Have I forgotten that at times? Perhaps I have but if I did it was not for a lack of being extremely cognizant about the public venue the site is and the potential to hurt and invade privacy that it holds.

CB was not created as a popularity contest to see who can have the most posts and guest book entries. The point of posting should not be to solicit public guest book responses from others. In fact, I would go so far as to say that I feel sorry for anyone who needs x number of public guest book entries/day to know they have friends. Every CB and blog site is different and unique. Some have many viewers and some only have a small amount….but that is not what matters. The story telling and the community of people reading the site is what matters. I, of course, love the messages on the boys’ site but I will never feel they are uncared for because no one signs their guest book for a week. I know their community is much stronger than that.

My tangent, by the way, is absolutely not about any one specifically. So please do not wonder - “is she talking about me?” It is simply a product of seeing one too many friends hurt by angry or lashing words written on various blogs and CB sites - sites that they only read because they care about the person for whom the site was created.

And so to wrap this up…there are things I choose not to share if I think they could hurt someone in a personal way -even if that person/group does not read the boys' site.

---

Friday, June 27, 2008 0:17 AM CDT

Well it’s time for my annual whining about the residents having the nerve to finish residency and move on to other things. I think that for as long as I have had this site there’s probably an entry every year at the end of June about this.

Yes the pediatric residents graduated on Sunday. Many of them are staying on to be hospitalists or to start a sub specialty fellowship; but still, and as always, it feels like an era ending. This class started as interns the July after Sammy passed away. I remember having such a hard time with the fact that they would never know Sam. I never thought for a minute that Zach would not be here when they graduated.

Zach really bonded with these residents –as well as the few classes that graduated before this class and also those who will graduate next year. Our residents always looked out for him, always passed on to the interns how they should care for Zach and always let me know that we could call them directly at night if things were bad. We had our share of laughs over the years. Zach loved talking with them. Even bad times are remembered with a degree of fondness because one or more of the residents was always there. When he came in by ambulance - unresponsive, when his back first fractured, when his heart rate dropped and he needed a pacemaker, a year ago when they told me about the mass they found on his thyroid, the times his heart arrested, those first days in the ICU – always the familiar faces when I was scared. When he was in the ICU I don’t think we had more than a few days without residents from either class stopping by just to check on him. He was definitely beloved.

So, yes, I am sad because it feels slightly like an ending - but more than anything I am very happy for them for it is much more of a beginning. And at the risk of sounding like their mother - though I am definitely not that old – I am so very proud of them. I get the privilege of watching them develop as physicians - and I get paid for it! I love seeing them grow from the beginning of their internship – when they are so focused on tasks - into third year residents who can see beyond the minute to minute tasks and are so capable, so smart and so compassionate. I love talking with them when they are on special needs rotation with us. They have such insight and perspective and I find myself inspired by them. At times I feel especially tired and overwhelmed with all the things that need to be done to make our program work for the residents. But then one of them says or does something that reminds me of why I do what I do.

Their graduation is one of those potent reminders - I just marvel that in three years they become pediatricians of whom we are proud to say – “he/she did their pediatric residency with us!!” And so I was happy to go to their graduation with one of Zach’s nurses, Amanda, on Sunday and hear the neat things that our residency director had to say about them. I did not realize that it was also the day that fellows graduate so I got to see the ICU fellow who resuscitated Zach two times graduate - he has completed his critical care fellowship. It is also the time for awards and it was neat to see who got what award.

I am so very honored that I received the outstanding educator of pediatric house staff award. This is the one that I received last year. The most meaningful aspect of it –for me – is that the residents choose the recipient. Natalya, who Zach and I have been so close to -presented the award. I wish I could tell you what she said but I was so overwhelmed with emotion that I am not sure I heard it very well.

During lunch and the following ceremony we sat with a critical care fellow, Paul, and his family. I have known Paul since he started his residency and last fall he provided such outstanding care to Zach in the ICU many weeks. Paul also got an award. I cannot remember what it is called but it is given to a critical care fellow displaying compassion and healing. I could not agree more with those who chose Paul to receive the award.

I was able to finally meet Paul’s 4-½ yr old son. His son actually came to Zach’s funeral but I did not meet him that night. However, I have loved the story about his son, A., coming to Zach’s funeral. Apparently A. saw a picture we had of Zach dueling this amazing, life size Darth Vader made out of Legos. A. was pretty impressed thinking that Zach had dueled Darth himself. When I heard about that I sent him a copy of the picture. What I did not know was that A. is a huge Star Wars fan…in fact at the age of 4 ½ he knows so much about Star wars that I know Zach would be very impressed. So on Sunday I got to sit with A. who is the most delightful kid in the world and experience the joy and wonder of Star Wars and other make believe marvels through the eyes of a child again. A. is now the owner of one of Zach’s lasers. I cannot imagine Zach would want it anywhere else but in the hands of a child who delights in Star Wars and life in general.

Monday two of Zach’s, very pregnant nurses came to visit me at work. I had another touching surprise for the second day in a row. One of the nurses reminded me that her first child has a first, middle and third name. The third name is Gabriel, in honor of a little girl Gabrielle who passed away the day her son was born. Melissa told me that she wants to give her unborn baby a third name and asked if she could give him the name of Sam in honor of my Sam. (Melissa was one of Sammy’s primary nurses as well.) Well I am sure it is not hard to imagine my response. However, I did warn her that in naming her son in honor of Sam she is risking having an extremely mischievous boy and I refuse to take the blame for that!

Well I think that is all for now. It is really hot here. Abby is doing well. She has one more week of her driver’s education class – the WRITTEN part. Not the driving part. Not going there yet, thankfully, as she is only 15.

I do want to share the below link for an article about TEAM, the pediatric resident education curriculum that I sometimes speak of. It was featured in the 2008 Community Benefits Report for Children’s Hospital and Health System (where I work). I think they did a very nice job although it does suggest that this is all my doing and that is simply not the case. I understand why they made it about me for the purpose of this article but I do want to be clear that I have had several physicians and one nurse right by my side from the beginning and I could not do it without them. There are also many staff members and parents who participate in teaching as well as Home Care Medical – Zach and Sam’s home care provider and IV pharmacy. We are truly a team.

If interested in reading then copy and paste the below link into your browser
The article is on page 4-5 I think.
You'll probably have to magnify it to see it. If you do not know how to do that you can just hit control and your Plus ( ) sign a few times.

http://www.chw.org/display/displayFile.asp?docid=20175&filename=/Groups/CHHS/CBR2008.pdf

The report featured only four programs this year and one of the other ones featured is the Special Needs Program. This is the program in which I took my new position. I am working with others to create a curriculum and teaching materials for caregivers and pediatricians of the children in the program. Kris, now you can't say I have not told you what I do at work!!!

---

Saturday, June 21, 2008 0:35 AM CDT

From a James Wood’s book review in the June 9 & 16, 2008 New Yorker:

“Nietzsche said that if a human being put his ear to the heart chamber of the world and heard the roar of existence, the ‘innumerable shouts of pleasure and woe,’ he would surely break into pieces…

A large proportion of life involves out refusing to put our ear to the mundane heart chamber, lest we die from hearing ‘the roar which lies on the other side of silence.’ It’s considered almost gauche to wave the flag of general suffering in other people’s faces…

For the lucky few, there is reason to hope that life will be a business of evenly rationed suffering: stern parents perhaps, a few humiliations…a love affair or two gone wrong…our parents will die…

Plenty of suffering for a life, certainly, but most of us subsist on the plausible expectation that fortune will draw a circle around that personal portion, and that the truly unbearable – murder, rape, dead children, torture, war – will remain outside the cordon.

Normal Rush in his novel ‘Mortals’ calls this ‘Hellsmouth’: ‘the opening up of the mouth of hell right in front of you, without warning, through no fault of your own.’ Without warning…”

***

School ended last week and with it another year that Sam’s class goes on to the next grade and he does not. It is impossible to imagine that Sam would be going into fifth grade. I don’t look at fifth graders as I do first graders…feeling that dual sense of familiarity on seeing a child Sam’s age along with the heartache of seeing a living, breathing child and remembering my vivacious and alive Sam.

And this year there is Zach – or rather not Zach. Zach not finishing his freshman year and Zach not excited that it is summer. How I miss his anticipation for summer vacation. We have an electronic messaging service in our district and all year I have received two copies of all high school messages – one for Zach and one for Abby. Every quarter I have received a report card for him as well.

I was always glad to receive those double notices and report cards. They were a witness to the fact that Zach went to high school. He did. He went to high school for a few weeks and his report card with first quarter grades proves that. Bless those teacher’s hearts who gave him A’s for his first quarter based on 2-3 weeks of work. And the notices, reminding me of conferences or reminding Zach that he had something due – well it was as if Zach was still here. Silly I know – but I found solace in the fact that at least the computer had not caught on yet – the computer did not know yet that Zach left.

But a week or so ago I got a notice that it was time to clean out lockers. I cried. Not so much because his locker has already been emptied out and cleaned but because it is the end of the year. Zach’s name will leave the system now. There won’t be any notices or report cards next year. Even the computer will know he is gone.

There have been other painful moments. The layers of protection continue to come off as the reality of Zach and Sam not being here permeates my soul. Every time I think “I get it -I get it that they are not here,” I realize a few months later that I only got it by degrees. The loss seems endlessly deep.

I knew it would never stop hurting but I guess that when I was told it would become a part of me, I falsely believed that to mean that this reality would cease to have the power of shocking me. I had the mistaken perception that here would be scars but no more moments of feeling like I am once again standing in “hellsmouth, ” stunned once again to realize that my two boys are not here and yet I am. I was wrong.

The warmth of summer, pulling out summer clothes, feeling grass on my bare feet, putting my hair in a pony tail - at times these simple things feel stabbing. My mind instantly goes to last summer – June 29th – finding out Zach had the thyroid mass. How I wish we never looked – never scanned. Then there is the sick feeling - irrational as it may be – that it was looking that caused his death.

Summer...I pull out a T-shirt. It says San Diego and it hurts. I put on flip-flops and they remind me of walking into the hospital last Sept 20th, never ever dreaming that Zach would not walk out with me. I come home but the fan club has been silenced. Zach was here last summer. And now he is not. How can that be?

The mail comes with a gift from the hospital in thanks for an annual donation I make. A travel mug and thermos. They have the Children’s Hospital logo. Better yet they keep cold things cold and hot things hot. Can I have them?” Zach would ask as soon as I opened the box. He loved all my employee incentive gifts with the logo - because he loved the hospital so much.

The hospital -I have had to fight back tears several times now when at a meeting and someone innocently talks about the new tower we are building. Two flat screen TVs in each room. It makes me ill thinking how delighted he would be.

There is an art contest right now and kids are submitting pictures of “my children’s.” Oh how he had plans to grow up and take over for our CEO because for Zach it truly was “MY children’s.” He wrote many an essay on how he would redecorate the rooms and what amenities the hospital would have. TWO TVs. He would have been so thrilled with that.

Perhaps what Washington Post’s Tom Shales said about Tim Russert describes how I feel best. Just insert Zach and Sam’s names in for Tim’s.

“But he couldn't have died. It seems impossible.
Tim Russert can't be gone because he was having too good a time…
(Zach and Sam can’t be gone...)

It couldn't have happened -- not to him.
Not to someone who so thoroughly epitomized ebullient contentment.
Tim Russert, without the slightest doubt, was in love with his life
and lived it with contagious esprit.
(Zach and Sam – without the slightest doubt – were in life with their lives…)

He got to do what he most wanted to do,
and thus did it with a seemingly unstoppable zest.
But nothing is unstoppable; that might be one cruel moral of the story…

It's just not right that he is gone, just not right.
It's an affront, an outrage, an act of cruelty –
and something that Russert never was: unfair.”

Yes, I could not have said it better. It’s an affront and an outrage!!

After Zach passed away I received a card from an attending doctor that cared for Zach only during the last few months of Zach’s life. He wrote that daily he watched Zach and I go through an unjust battle and that Zach’s death felt unfair and unjust. The card is one of my favorite cards.

If I learned my lesson from the boys then I will use that sense of their deaths being so incredibly unjust to propel me to continue waking up, trying to embrace and love life and make a difference for others the way they did. I have a long long way to go but as Sam always said – “Never give up. Never never give up!”

---

Monday, June 16, 2008 10:41 PM CDT

As read by Maria Shriver during Tim Russert's memorial service today.

The Little Ship
I stood watching as the little ship sailed out to sea.
The setting sun tinted his white sails with a golden light,
and as he disappeared from sight
a voice at my side whispered,
"He is gone".

But the sea was a narrow one.
On the farther shore a little band of friends
had gathered to watch and wait in happy expectation.
Suddenly they caught sight of the tiny sail
and, at the very moment when my companion had whispered,
"He is gone"
a glad shout went up in joyous welcome,
"Here he comes!"


Monday, June 16, 2008 10:41 PM CDT
School ended last week for Abby which is good for her. However, life for me has just felt too hectic. I don't do well with that kind of schedule.

So very sad about Tim Russert. I always loved watching Meet the Press on Sundays and learned so much from him whenever he appeared on MSNBC at night. I loved that his Jesuit background always showed through his life - I guess because I came from a family that believed so strongly in Jesuit education too and so it felt familiar to me. I'm not sure Sam and Zach loved Meet the Press but they put up with it for the most part. Sam usually fell asleep with me on the couch. Anyway - my heart goes out to his family.

I'm not sure i can write much more tonight. Just not in the best of places emotionally to say anything at all. Instead I am posting a few memories that have been shared with me about Zach and Sam.

One other memory I cannot exactly share due to my technology ineptness - but I can write about it. The boys' school speech therapist sent me the best memory last week. She had recorded Zach's voice for a speech sample a few years ago and still had it. She was able to send it as a wav. file and I got to hear his voice. I could see him so clearly. He was dramatic in the sample - so very Zach and I could not help but smile despite missing him so deeply and profoundly.

anne
_______________________
From a colleague and friend:
When Zachary was about 8 years old, he had a surgery that caused him to be in the hospital for a long, long time. He was in pretty dire need of a hair wash and cut. My daughter, Emily was also in the hospital for a part of that time, so when our friend and hairdresser, Diane, came for a visit she offered to “do” Zach’s hair.

Zach is a fearless soul, brave and strong. I had never seen him cry or be afraid of anything (even at the swimming pool!) But the thought of having someone cut his hair was frightening for him. I don’t know if it was the wash or the cut that was so unnerving to him, but I believe he did shed a tear or two. Amazingly, this boy who endured medical tortures and treatments with a bravery that most adults do not possess, would become undone by an ordinary hair clipper.

As a way of cheering Zach up when Diane was finished, she said, “Zach, you’re so handsome that people should pay to see you!” and gave him a coin. That really did the trick; and a very pleased and proud boy flashed his famous smile. And Zach was not too shy about asking everyone else who entered the room after that to pay for the privilege! (Of course, we obliged.)
________________________

From the boys' PT:
My favorite memories are when we let Sammy and Zach devise their own therapy sessions. They could be as creative and fun as they wanted, it just had to be somehow “therapy” to count for exercise. We had been doing lots of activities throwing balls at targets or hoops. One of them got the great idea that it would be lots more fun if the targets were their therapists!!! They gathered up a pile of beanbags, stood at the end of the hall, gave us a limited area we could be in and try to dodge them. Then they started hurling the bean bags at us (usually hitting their target) and we would scream and cover our heads in true girly fashion! They were laughing and howling so loud I’m surprised security didn’t check on us. They requested that game over and over and we always had a great time!

---

Sunday, June 8, 2008 9:52 PM CDT

What busy days.

Brittany came home again this weekend. We had Abby’s birthday party with our extended family Saturday, which was very nice. Our biggest discussion was actually not about politics. Really! It was about whether it is okay to date many people at the same time or whether going on a date indicates an exclusive relationship. Very interesting.

Today I went to Hope’s baby shower with Brittany. Hope is one of Zach’s nurses. Another one of his nurses – Amanda – hosted the shower. It was nice to see our 4 west friends. We found a baby bank for Hope’s baby and decided that would be a perfect gift for the personal finance guru to give to the baby. And we found an activity dog for the baby from Sam. It was fun shopping.

I miss Zach. He would have pretended he was sick of us talking about Hope’s baby but I just know he would have been excited. Excited that he and Hope’s husband, Tom, could teach the baby all about Star Wars and such. I was thinking that he would visit Hope after the baby was born, bringing the baby the giant Darth Vader balloon that my friend Kris sent to him several times in the hospital. Of course Zach would be disappointed with Hope right now as she did NOT decorate the nursery with a Star Wars theme. And I don’t think she is considering the names of Leia or Luke or Chewbacca or CP3O. But he would have liked her having a baby – as long as she came back to work at CHW within a week or so!

I am speaking to the Blood Center of Wisconsin Wednesday. I am honored to have the opportunity to do this. I spent a few hours this evening reading through old emails about the boys and their hematology care. I want to make sure I remember the events and how I felt through all the stages – the diagnosis of bone marrow failure, those first few transfusions of blood, the beginning of Sam’s bleeding problems, all the things and people involved in providing for just one day at home with blood products. I am glad I saved all those old emails as they definitely tell the story.

This is Abby’s last week of her first year of high school. She has exams and has been studying hard. She is also adjusting to a change with her braces. Brittany went back to Minneapolis tonight. She looked good to me – more rested than last weekend. She should finish a project she has been working on this week – in the lab she works in. She is likely going to work with mitochondria for her next project and she is very excited.

A few weeks ago I found a few things that Sam had written. I am including one tonight about ambulances. Remember – he wanted to be an ambulance. He sounded out the words – which will be obvious to you. Don’t worry – I put a translation below each line.
The way he spelled things sure shows his hearing problems – but reading it was such a visceral reminder of his sweet, Sam voice. There is nothing like his voice in the world.

This must have been written in first grade – towards the end of his life because he spelled the, and, is and to correctly – he was very proud when he could recognize and spell some of those basic words. When we practiced reading and we got to one of the few sight words he knew he would literally bounce up and down. “I know, I know, I know!” He’s say. Then he’d blurt out the word that he knew…”THE!!!!”

***

Amblenz
(Ambulance)

Amblenz hlp kidz
(Ambulance(s) help kids)

Da go fas and pede
(They go fast and speedy)

And hlp pepl gt btaw
(And help people get better)

Wn I gwo up I am goen to be a amblenz
(When I grow up I am going to be a ambulance)

I wil tac kidz to mi hoptapl to dcta haninz
(I will take kids to my hospital to Doctor Havens)

He wil mac dem betwa and da wil laf
(He will make them better and they will laugh)

Den dcta gwenbom wil jogl mi dogz
(Then doctor Greenbaum will juggle my dogs)

Datz hw amblenz hlp pepl
(That’s how ambulance help people)

And I fowgot to sa dat wen the amblenz goz pede
(And I forgot to say that when the ambulance goes speedy)

The pes man don giv a tikit
(The police man don’t give a ticket)

Tool!
(COOL!!)

---

Wednesday, June 4, 2008 9:29 PM CDT

Written by my sister and author, Maribeth Fischer, this is from the Writers at the Beach website www.writersatthebeach.com

Hosted by the Rehoboth Beach Writers’ Guild, a 501 c (3) association, "Writers at the Beach: Pure Sea Glass" was founded in 2005 to raise money for, and awareness of, a little known disease that affects as many as 1 in 2000 children. Mitochondrial disease.

At our inaugural conference in March 2005 we hung posters throughout the conference facility with pictures of children and teens all of whom had this disease. "The Faces of Mitochondrial Disease" the poster said at the top. Over twenty children were shown, posing at Disney world, arms outstretched and standing in front of a lake, sitting before a Christmas tree, hugging a teddy bear. All were smiling, laughing, living.

Over half of those children have since died.

Two of them are my nephews, Sam and Zachary.

***

Maribeth planned that first conference while Zach and Sam were alive. I sat in the community hospital ER in the early hours of March 3, 2005 while my sister was about to wake up for the last 24-hour stretch of time before that inaugural conference began. It’s funny the things that run through your head at times like these. I remember thinking “Sam you cannot die. Aunt Maribeth has a conference planned to raise money for you this weekend.”

But he did die… and at one point I vividly remember turning to Sam’s doctor Peter and asking “What is my sister going to do? What am I going to tell her?” He said, “You tell her to have the conference. She has to have the conference. You tell her to have the conference for Zach.”

And so she did…I cannot imagine how - for she and Sam were unimaginably close – as she has been with all of my children, each relationship unique and special. They raised about $10,000 that first year. She never told anyone about Sam until the conference was over. And then she got on a plane and came to Wisconsin and stayed up late helping me make picture boards for the funeral the next morning.

***

The website continues…It tells a story about a geographical community and a professional community coming together and doing amazing things.

Still, why a writers’ conference?
Because unless this story gets told—and heard—the money for a cure will never be raised. Because we all have stories like this that need to get told for whatever reason. "Writers at the Beach" is about helping others to tell their stories.

In the last three years, thanks to the writers, agents, editors, publishers and songwriters who VOLUNTEER their time to this event, thanks to the web-designers and photographers, to Celia Pearson, whose sea glass images we use each year, our local restaurants who help make the author dinners possible, the local and national companies who donate products, and the many many participants who donate an extra ten or fifty or one hundred dollars to this event, "Writers at the Beach: Pure Sea Glass" has donated over $35,000 dollars to the United Mitochondrial Disease Foundation in honor of Sam and Zach Juhlmann.

***

Below is the letter that my sister sent to this year’s conference participants. I have never gone to the conference. It fell on the weekend that marks Sam’s death for the two years after Sam died. In that respect the timing was right this year but wrong for Zach has now passed away and losing him is still too fresh for me to be there. But my parents and brother and sister in law attend and by all accounts it is an amazing experience - for both veteran and novice writers.

***

May 9, 2008


Where to begin?

With thanks to every one of you who attended the conference, took the extra time to read the articles and information about Sam and Zachary, donated extra money for mitochondrial disease research, made time in the midst of a crammed schedule to tell me that you were enjoying the conference—which meant so much to me. During those three days, I feel enormously lucky to be the person organizing this event, for in so many ways—emails after the conference, hugs, promises to return, offers to volunteer at the next conference, you make me feel special, you make my story of Zach and Sam your story, and I am grateful.

I mailed a check to the United Mitochondrial Disease Foundation for $15,400 in Sam and Zachary’s names with the request that all of this money be used for research. I don’t want it to go to administrative costs, though I know every organization needs money for this, but I am too aware that much, much, of the money we raise, both from registration fees and donations, is money that that doesn’t come easily. Nor does the time you make in your lives to attend this event. And so I want to ensure that it goes directly to what matters most: finding a cure.

I wish that I was continuing this letter with the dates for 2009, but we need to take a one-year break--in order to ensure that the conference will continue. Because of the way it started, with me thinking it was a one-time event, and because of how quickly it has grown, I never put in place so many of the things that need to be in place: grants, for instance, and corporate sponsors. A committee to help with the many decisions that begin to get made starting in April of the year preceding the conference, interns or volunteers to help with the multitude of little tasks: making name badges and programs, writing press releases, typing up restaurant menus, figuring out an efficient way to create the schedules; marketing, press coverage…

And yes, you have volunteered and no, I have not taken you up on your many generous offers, but in great part it’s because there is no real structure in terms of how things get done, and I need help in creating that structure. How do I organize volunteers? It seems so simple, I know, but I don’t know how and have to learn. And I will, for I would love not just your help but also your friendship, and the camaraderie that comes from working with others.

Our conference in 2010, to take place March 25- 28 (we already have a deposit at the Atlantic Sands) will be our fifth conference. An anniversary. A celebration. I promise you it will be wonderful. It will be worth the wait. And of course I will keep in touch with you. And feel free to email me at any time (mbfischer1@verizon.net).

Today would have been Sam’s 11th birthday. I’m wearing orange, his favorite color, and thinking of him, and of all of you, feeling so lucky, so grateful, that you have given me the chance to share him with you.

Again, thank you. Have a wonderful summer, allow yourself time to write even if it’s only for 15 minutes a few times a week. I will be in touch soon.

~ Maribeth

***

Below you can see a few pictures from when I took Zach, Abby and Brittany to visit Maribeth in Rehoboth beach that first summer after Sam died.

Thank you to the following authors, poets, screenwriters, publishers, magazines, literary journals, musicians and songwriters

Jacquelyn Michard, Robert Bausch, Liam Callanan, Nathan Leslie, Carolyn Parkhurst, Leslie Pietrzyk, Sheri Reynolds, Mary Kay Zuravleff, Marisa de los Santos, John Hoppenthaler, Michael Blumenthal, James Harms, Shara McCallum, Erin Murphy, Dave Smith, Michael Waters, Sam Calagione, Anne Colwell, Mark Drew, Marian Fontana, Victor Greto, Tom Horton, Fay Jacobs, Kim Dana Kupperman, Bonnie Neubauer, Mark Reutterm, Dustin Beall Smith, Jennifer Storm, Flip Brophy, Sterling Lord Literary Agency, Jamie Brown. Louise Crawford, Blogging, Candice Fuhrman, Candice Fuhrman Literary Agency, Mark Gompertz, Senior Editor, Simon and Schuster, Kendra Kolpelke, Richard Lamotte, Lauren Mosko, Writers Digest, Bill O'Sullivan, Senior Managing Editor, Washingtonian, Franklin Parrish, M19 MEDIA, Terry Plowman, Delaware Beach Life, Elissa Schappell, Doug Stewart, Sterling Lord Literary Agency, Randy Lee Ashcraft, Ed Shockley, Kent Schoch, Stuart Vining, Kevin Fleming, Khris Baxter

And thank you most of all to the author of The Language of Goodbye and The Life You Longed For - MARIBETH FISCHER – MY sister




Looking for Seaglass in Delaware, August 2005. We spent a day looking for sea glass at an isolated beach. Each piece is so precious.




Visiting “Aunt Maribeth” Summer 2005 - Rehoboth Beach



Anne, Zach and Abby Summer 2005 - Rehoboth Beach

---

Sunday, June 1, 2008 7:10 PM CDT

We had a nice weekend. Brittany came home for Abby’s birthday, which meant a lot to Abby. We also were able to have my Mom and Frank over both Friday and this afternoon. Currently Frank and I have a $1000 bet regarding the presidential election. So sad that he is going to owe me all that money come November!

We also were able to spend some time with Brit’s good friend Erica. I think we have known her since they were in about first grade, playing soccer together. Last weekend, Prasanna, came home for the weekend. Prasanna is Brit’s longtime friend who went to U of MN with her. Prasanna surprised us when she came over with Danielle and dinner. She is an amazing cook – always has been. I am not an amazing cook - and never will be. So being spoiled by a full meal complete with dessert was awesome. It is so neat to see these “kids” – Brittany’s friends. I love talking with them and hearing their thoughts and all the things they plan to do. I’m glad they still like to stop by.

Well back to Abby’s birthday…I’ve been thinking a lot about Abby – her being 15 – which just sounds so old to me. I have been reading her baby book. This particular “baby” book is designed to record history until the “baby” is age seven. I was pretty good at keeping it until she got to be about five. The funny thing is that she did not like that I got behind on it. So when she was seven she finished filling it in for those last 2 years.

When she was 18 months I wrote about how she understood the word “no” perfectly well but never listened to it. I commented that this was because she had been desensitized to it by Zach who at the ripe old age of 29 months spent the entire day saying “No abba no.” I still remember that. He liked all of his toys in order and he liked things to be done just exactly so and then she came along. She was definitely a challenge to his sense of order, which was one of the best things to ever happen to him. I wonder all the time what he would have been like without her. He learned to do just about everything from her. She was so good for him. In the morning I would walk in their room and they’d ignore me because they were having so much fun jumping in their cribs and babbling to each other.

Abby has given several statewide talks with me about the boys and health care from a family perspective. These are a few excerpts:

On Sam’s birth:
When I was four years old my baby brother Samuel was born. I remember that the day Sammy was born I made him a card and put it in his bed while he was sleeping. I thought that he would read it when he woke up. Sammy was born healthy but he got sick when he was a few weeks old and his problem were worse than Zachary’s were. I did not really notice though – he was just my baby brother and I loved being his big sister.

On brothers being in the hospital:
My brothers have had a lot of surgeries and have had to stay in the hospital a lot. I don’t like it when they are in the hospital. I have to wake up early and go to my friend’s houses. I miss my Mom, Zach and Sam and I get tired of visiting the hospital. One time when Zach was in kindergarten he had to stay in the hospital for 5 months. We were in kindergarten that year and he was my best friend. I missed him so much. Sometimes I would sleep in his bed at night because I missed him and I would eat cheerios in the morning even though I hated them because he liked them and it reminded me of him.

On living with uncertainty:
One night my mom had a talk with us. She told us she wanted us to be prepared that Sam might die. It was hard for us to hear and I started crying. I felt like I was choking and I could not say anything. Sam and I have a really good relationship together. I love him so much. It is very scary to think of him being gone forever. When he is in the hospital that is okay but for him to never come back is too sad. I’d miss his voice and his little face and I think I would cry if anyone said orange because it is his favorite color.

It was horrible when my mom first told me that he might die and not grow up to be an adult. But I am glad that she told me so it won’t be a surprise if anything happens. I think my heart would be totally stricken. I don’t think about him dying very much. Sam is very strong and he has the best doctors. He has been close to dying before and he has not. I try to hope for the best for him. Every night I pray for him to get better or at least not to get any worse.

On the value of being at home:
Until a few years ago I felt like my mom lived at the hospital with my brothers. They were always in the hospital and I never knew when I’d come home from school and they would not be home. Last year my mom spent almost every day at the infusion clinic with Sam. I hated that. I felt like I was being sucked in and trapped and it was hard to have hope. Now that Sam can get his blood products at home it is so much nicer. My mom is very busy taking care of Sam and Zach and sometimes I get jealous but at least she is at home. I never feel like we are a normal family but when everyone is at home I feel like I can forget about the disease for a while and we can just laugh and have fun.

On the boys’ primary doctor:
When I think about my brother’s doctor I think about how much he loves them and wants them to be happy. He listens to my mom and he always helps her figure out what to do. He always has new ideas and He spends a lot of time with my mom and brothers. I can tell they like him a lot. My brother Zach says his doctor is his friend. He called my brother on his birthday. I think it is cool how comfortable my brothers feel with him. I can’t imagine if he did not take care of my brothers.


Together Forever
Written by Abby in 2005, Sam had just passed away

Your heart still beats next to mine
Your fingers hold me, nice and fine.
I hug you and you hug me back, just as it was,
Though I do feel an emptiness, but only because

You’re having fun and my eyes can’t see,
I can’t see the beauty of all of these.
My heart gives anything to hear your voice,
Still though I don’t have a choice.

You need me to be home, do what I can,
I need to hold on, I need to stand.
Though my heart shatters, because I miss you,
I have to wait here, I have to wait it through.

I love you Sammy, I miss you so much,
I would give anything just to touch,
Your silky blond hair, gleaming in the sun,
Your eyes, legs and hands that clung and clung.

It was your turn, you had to leave,
It’s not mine though I can’t deceive.
I live on Earth with no choice
But to wander alone, without your voice.

I carry you Sam, I carry you in my heart,
We are one piece, we are not apart.
Together we will travel, you and me,
That’s the way it is and always will be.

MAY 31, 2008
Happy 15th Birthday Abby!!!!!

WE LOVE YOU






Abby and MAX on Broadway, NYC, March 2008



Abby and Anne, Central Park, NYC, March 2007



Abby and Brittany, San Diego, August 2007



Abby, January 2006




Abby and Zach, 1st day school 2003



Abby and Brittany, Rehobath Beach, August 2005



Abby and Zach - best friends



Abby and Sammy 2003

---

Tuesday, May 27, 2008 10:14 PM CDT

Six months and one day ago - On Nov. 26th at this time of night - Zach was here. He was almost finished his Conivaptan bolus dose. We were so careful and ran it over 12 hours instead of one. We put in an arterial line that morning. We were doing labs every 2 hours. I had a plan for morning rounds. Zach’s resident and I had already discussed things and we were going to advocate for dialysis Tuesday morning. On Sunday he had not met the criteria but we knew if the med did not work that he would meet them by Tuesday.

Still…I was pretty sure the med would work and the dialysis would be unnecessary. After all he had something like 800 cc output in an hour after the first dose/first code. I remember laughing with the docs at evening rounds and telling them that by the time the day shift attending and fellow returned in the AM he would be liters lighter. They had their cautious faces on but they were definitely not the grave, “we see the writing on the wall” faces I had seen before.

I had so much hope that his kidneys would start working by midnight. After all that morning his lungs actually sounded better and he looked, inexplicably, less edematous. Zach’s primary doctor and I talked every morning by phone before he got to the hospital…I could not wait to tell him that once again Zach had miraculously improved. I was not in denial. I understood how critically ill he was. But I just had so much hope. He had already survived three arrests. Surely his survival against all odds was not random, not just chance.

I remember I took some clothes to a sleep room. I was so tired as I had very little sleep the night before. But I forgot something and came back to the room. I was on my way back out of PICU, talking to our fellow, Brenda, when Zach’s nurses told us to come in, to call the night attending doc. And that was the beginning of the end.

Six months ago, on Nov 27th, Zach’s heart beat its final beat shortly after midnight. Afterward the attending kept saying " but he was not even signed out to me as someone to watch out for…" and “What exactly just happened?” It happened so fast. Now I know it was likely the med in question that pushed him over the edge but at the time there was such a sense of confusion. What happened? How did it happen? Did it really happen?

I felt this way with Sam too but I think the difference is that Sam was amongst people who did not know him and so did not share that sense of shock. With Zach, I was surrounded by countless people who had touched, looked at and cared for him all along – many for years. The collective experience and sense of betrayal by fate and hope made it all the more surreal.

I remember they were trying to call Peter. He had left town for a 24 hr trip that afternoon. He never would have left if he could have foreseen what would happen. His phones had been accidentally turned off. I remember asking them to keep trying. They tried to reach him all night. And I remember thinking someone has to call our hematologist. Did they? I hope so. I wanted someone to tell him before he got to the hospital and just heard it without warning.

Someone called my family. They came. They left. I stayed. I fell asleep with Zach and when I woke up our morning attending was standing next to me. I went home. And probably about the same time that I was almost home they were telling Peter. He probably realized his phone was off when he went to call me. And that would have been when he got the messages to call the ICU. When I walked in the house he was on the phone. I have no idea what we said. And aside from some random memories that is all I remember until Christmas.

With Sam I can tell you every detail following his death. With Zach …well I think my brain immediately knew what was coming this time. I think of it like an antibody recognizing an antigen. If we have an intact immune system we build up an immunity to protect us – we do not get sick with the same thing twice. In the same way I think that before the reality even reached my consciousness my brain recognized it and immediately blocked much of the experience from entering my retrievable memory. I don’t know how else to explain that I truly cannot remember almost an entire month of my life.

Unfortunately, the immunity is passive and not permanent. It wears off. But I do think it is probably the only reason I survived in the beginning. And I know from experience that in another six months the reality will be more clear and sharper than now…and I will feel as if on May 27th I really did not understand the permanency of the loss. But today it feels like quite enough reality.

But here is the truth…and this is not Pollyanna speaking…this is simply the truth. The reality I live with now is so worth the reality I had for over 15 years. It would have been better if the plan had been for me to experience those 15 years without having to pay this price. Unfortunately, I was not consulted and the cost is apparently not negotiable. Believe me I tried. So I can only weigh the costs and benefits I have been given. My conclusion is always the same no matter how many times I analyze it: the benefits are so magnificent and infinite that if the only way to receive them is to live with the cost –my current reality – well then I will live with it. Zachary Ryan Juhlmann is truly the one and only! I am so lucky to be his mother.

Tuesday, May 27, 2008 0:44 AM CDT
Hard weekend. Who would think Memorial Day weekend would evoke so many memories but it has for Abby and for me.

***

Below is a revised version of "How to Save a Life"

I found out a few days ago that Sam had TEN platelet donors. I always knew it was a small amount as he had a PRA of 94-percent. That means he was resistant to 94 percent of the population's platelets or I suppose you could say he was able to get 6-percent of the population's platelets.

If only five percent of our entire population donates blood, you can assume the number donating platelets is much smaller. Then imagine how few people would match a little boy who had so many antibodies that he reacted to nearly the entire platelet pool.

TEN donors. Think about that. TEN people coming in week after week for years to give one little boy his platelets. On a good week Sam got platelets four times/week. Mon, Wed, Fri and Sat was his schedule.

When he was bleeding he got them daily and sometimes more often. And Sam bled a lot. There were times they came in after only a four-day break because he was sick and some of his other donors were unavailable. I also know there were less than ten initially. They found more the summer before he died…but in the beginning there were not ten.

Sam developed the antibodies either before or right after his first dose of platelets. I so clearly recall it was a Friday night when we got the news. He had been bleeding all day –uncontrollably – and then we got the devastating news. The medical director called the floor and told me they were going through their lists trying to find a match. The first donor came in very late that night and he was finally transfused at 2:00 am.

TEN people who I never met. They did not even know the wonderful little boy they were helping but they gave anyway. I just cried when I first read the email telling me this. To think about that kind of goodness, offering their time and their very life to a child - for years - and never asking for a thing in return just overwhelms me.

We never even met...they received no fame or glory from donating. No one knew, no one raved about them being a hero, they were not paid for their time or expenses and newspapers did not tell their story. Yet they did it anyway. Their motive is crystal clear -it was never about them but about SAM - only Sam. If Sam's TEN donors are not the very picture of God's love on earth then I truly don't know what is.

****

Children's Hospital and Health System employees:
Blood drive this Friday - May 30th
You can bring family and friends
Sign up for a slot this week with Carla Bradford
(You’ll have to look in the global directory until I get to work and look up her number.)
You can also sign up in the "dining room" on Thursday.

Make an on-line slide show at www.OneTrueMedia.com

---

Wednesday, May 21, 2008 11:24 PM CDT

I had a surprise call today. The FDA is going to investigate the adverse drug reactions related to the drug Zach got the night of his first arrest as well as the night of the last.

From the beginning I asked for a report to be filed. For a variety of reasons it did not happen for many months. I got to a point where I felt something had to be done. It was not clear to me that a report would ever be filed on my behalf so I filed one myself. A few weeks later a second one was indeed filed on my /zach's behalf.

Every physician and pharmacist I spoke with told me they had never seen the FDA investigate a report. Of course I am sure they do investigate some reports – but rarely and it is unlikely until there are many adverse event reports. I felt shocked when I heard that. How could they not investigate when a child died? That is not to say the drug had anything to do with his death. But there certainly are questions that should be researched.

So when I wrote my report I gave the facts in the medical language I knew they would listen to. Then I tagged on a note that was in the language of a mother - basically pleading with them not to dismiss the report just because he had a chronic illness. It’s just too easy to say that he had so many problems and therefore one cannot “prove” the drug caused anything. While it is true that proof is unlikely, it is fallacy if any one believes that his chronic illness translates into “well of course he would arrest.”

Yes, his kidneys were acting up but he was not anywhere close to a cardiac arrest risk. He was not critically ill. He was not even in the ICU. It was unexpected – it literally came out of the nowhere. It did not occur because someone failed to assess him or did anything wrong. He had two excellent fellows assess him less than forty minutes before the first heart arrest due to some respiratory issues related to narcotic overuse. He had nurses that night that I trusted – with good reason – implicitly with both boys. I know it will be so easy for them to dismiss it as a "he had so many problems" despite the truth of that night.

The second dose was the day/night he died. That is a different story. He was indeed critically ill and in constant danger of arrest. I believe with all my heart the drug pushed him over the edge but he was so fragile that if not the drug I have to think something else likely would have done it.

I try to hard to not get stuck in one place. I don’t feel that this is anyone’s fault. It’s different than Sam’s ER experience where we met blatant arrogance and refusal to listen or to consult anyone. It’s very different. Yet as a mother it is so very difficult not to think about it. If he never got the drug the first time would he ever have gone to the ICU? My belief is no but I do not know that. But still my thoughts continue. If he had never gone to the ICU then he would not have gotten weaker and weaker with time. We would not have needed to give the drug the 2nd time. He would be alive. Alive. But then I remember his autopsy and I think – no, Anne, he would have died. Maybe not in November. Maybe in January or March but he could not have continued with his heart as large as it was. But even that is not consoling because I would take another month or another day or another hour.

I’m not sure why the FDA is looking into it. Would they have done so without my report and note? Hard to say. I was told a few months ago that a mother going to the FDA may get further than a health care provider. That was not intuitive to me. Whatever the reason I am glad and yet I am trying very hard not to hope for anything. I am so afraid that nothing will come of it, that there won’t be a true desire to exchange information and learn. The reality is probably nothing will happen. There are too many variables. I will try. I promised my boys I would always give everything I have for them. (as I would for my girls). Still..I am trying to prepare myself for inaction even though there is no preparing for hearing "we won't do anything." I’ve been here before with Sam and the ER and their refusal to even talk to us. Hard to imagine a pharmaceutical company will be less legal phobic. No one likes an "investigation."

It’s just hard and there is no mechanism to ever really talk about these bad things that happen in hospitals. No matter how it gets discussed it ends up making people feel badly. I have come to the conclusion that I am at a loss for how to handle safety issues in the hospital. I always thought that if people could just talk about it without blame then everyone could learn. That worked well for minor errors that caused no or little harm. No one ever minded telling me about mistakes because they knew my philosophy was to make sure the boys were safe, then figure out what happened and work together to find ways to prevent it from reoccurring.

But when it is a big problem it is different. I continue to have the same philosophy (although I cannot make sure my boys are safe anymore). Almost no one else sees things that way, however. Even people who did everything right, who provided amazing care for years feel as if they are to blame. I guess some is human nature but a lot is because for all the talk about transparency and safety efforts and quality improvement it just seems that we have a culture that has made health care providers feel that it is not okay to talk about these things. Somewhere along the line that has been learned and is embedded into virtually everyone. Somehow everyone from administrators to doctors to nurses to other providers have learned that it must be someone’s fault. When bad things happen it’s awful but why can’t we at least find a way to learn from those things - together - instead of everyone learning alone -one person at a time. It just hurts everyone. Why does someONE have to be blamed?

If I cannot have my sons I want to at least feel like their lives were deemed valuable– worth having hard conversations and changing “what we always do” and letting go of our “positions” that have nothing to do with evidence. I want their lives to matter enough that people can get past feeling uncomfortable or guilty and can stop avoiding me just because in hindsight perhaps they would make different decisions. Who wouldn't make 100 different decisions in hindsight?

I want to feel Zach and Sam’s lives taught people, that they still remember that even when things were bad we always worked together and we did such great and seemingly impossible things. When things went wrong we did not call risk management. We did not work on things from different places and tell people they were on their own. We stood together and did whatever needed to be done together. No one could ever imagine how they were at home. The boys had the most amazing systems in place with hundreds of people adding to their care and thus their lives. Those systems were not in place from day one. We built them one by one. We improved them whenever something showed us we could do better. If we had to turn the mirror on ourselves – and bring out the microscope –well then we did. And for that reason their care was truly the care of legend.

Earlier today, before I got the FDA call, I talked with someone I know who cared for each boy just a little. We talked about many care issues. It was the first time in months that I had a conversation about things related to Zach’s care and I did not worry that the person would feel I was blaming them or anyone. It gave me hope during a week when I have had a hard time.

Hope that maybe someday another mother walking this path will not find herself so isolated. Maybe someday a mother on this path will know with certainty that her child’s life mattered so much that people were willing to know her even after he died, willing to feel uncomfortable, willing to pull the fences down and remember that the only reason anything wonderful happened was because it was done together. Hope that someday when bad things happen to a child, a mother will at least have the comfort of knowing that her child’s life mattered so much that no one can imagine not learning a little, growing a little - together. Otherwise is just feels like death.

---

Tuesday, May 20, 2008 7:19 AM CDT

We’re ok. I’ll try to update more later in the week. We had a nice weekend. I had some time to visit with my neighbor lady friends on Friday. Abby had a bunch of friends over on Friday night.

I’ve actually started writing my thank you notes again. It is hard – not because it is tedious. Just heart breaking to be doing this task.

I started a new job Monday. It is 20 hrs and I am still working my first job, which will hopefully be managed at 15 or under hours. It’s all a little overwhelming right now. Lucky for me they are both very interesting and both at Children’s Hospital.

I have started helping out with the Children’s Hospital blood drives. I’m not doing much and was lucky enough to have great help from some of my colleagues so it took little time. But I’m excited to be helping. For those working at Children’s please consider signing up for the blood drive on Friday May 30th. I’ll post more info later or you can look on the intranet. You are very welcome to bring family and friends!

Hope to plant flowers for my boys this coming weekend. I still have not settled on what I will do for Zach. I need to look for a big garden statue too as right now there is nothing marking his grave. That’s not ok to me. So I hope the weather cooperates and I can bring come color and life to the cemetery…if only I could bring those boys back to life.

---

Tuesday, May 13, 2008 11:38 PM CDT

Thank you for all of the Sam birthday messages. He is funny isn’t he? On Friday – his birthday - I spent the day just remembering all of Sam’s sweetness, vim and vigor. He taught me so much about being real and living in the moment.

Until I had Sam I was a mom who had all her ducks in a row. Every day had a plan and we rarely deviated from that plan. Our routines varied little. The kids were always dressed nicely – I think Brittany had 10 pairs of shoes at all times since of course she had to match perfectly. Bills got paid early, the house was relatively clean and lunches were made the night before. I made dinner every night and everyone was well behaved at the table.

And then came Sam…. and he just had this wonderful personality that threw “the plan” out the window. I never knew what the hour, much less the day, would bring. We often decided to go here or there on a whim. We learned to have fun no matter where we had to be. People often talk about the energy that emanated from the boys’ hospital room.

Sam picked out his own clothes and they rarely matched. His hair was so often a mess. The house had stuffed dogs and super heroes all over the floors and he loved to pick the wallpaper off bit by bit in his room. I no longer cared if the kids had the table covered with their art projects, had the living room covered with train and block cities for weeks on end or took the sheets out of the closet and made tent cities. I simply learned to tread carefully through the obstacle course that had become our home.

The bills – well like everything else they were taken care of at the 11th hour. Everywhere I went with the kids I was late. It’s hard to imagine I was ever one of those people that was 5 minutes early. Dinner? Well we still ate together every night but I had no qualms about offering frozen waffles or grilled cheese. And I am sure anyone who read some of Sam’s quotes would not be surprised that dinnertime was a riot. He definitely did not behave. I tried so hard not to laugh. He stole our napkins, threw them in our water, turned the lights off and on and one time even mooned me.

Sam innately knew how to just be. He taught me what mattered. And how so many things I cared about were silly and insignificant. He taught me to spend time on things that are of value. This in turn gave Zach, Abby and Brittany permission to just be -whoever they are meant to be. What a gift that has been to me and everyone who knows them!

I still have a long way to go - still have to remind myself that work will always be there, the inbox will always be over flowing, but time with my kids cannot be taken for granted. However, even though this is a learning curve for me – at least Sam put me firmly on that curve.

What I have inadequately described is joy – the feel, sound, smell, taste and sight of joy. Sam is joy. His joy is so magnificent that even in the midst of sorrow it remains so very palpable. Every sense of my body continues to recognize its presence. And on Friday – his birthday – his joy was over powering.

I woke up to latte and a scone -Brittany woke up early to get those for me. Later she helped me pick out balloons for Sam. In the evening my Mom and Frank came over for dinner – which of course included McDonalds French Fries. White wine and Fr. Fries -try it sometime!

Afterwards some of “Sam and Zach’s nurses” from Children’s Hospital came over for cake and we had a really nice time visiting. They brought beautiful orange roses too. I miss them so much and it was really wonderful to celebrate with them and the rest of my family. One of the things I cherish the most is that they knew Sam. They knew Zach. They have memories of them and when we talk there is a sense that we have a shared story.

Later that evening – after midnight, when Sam’s birthday had come and gone, the loss hit me. I woke up and I just thought - “this is wrong.” “The boys not being here is just plain old wrong.” This is how it goes. There are moments and even an entire day when I can celebrate the gift of my boys, as I did on Sam’s birthday.

Then without warning reality hits. They are gone and the wrongness and unfairness of it is so acute and so irreconcilable for me. I have heard some talk about feeling guilty for having good moments after their child dies. I understand that but I cannot say I ever feel that way. I just feel thankful that there are islands of hope and celebration.

The rest of the weekend was truly exciting. Want to know what we did? Abby and Brittany cleaned Abby’s room. Brittany wanted to do it and if you had seen Abby’s room it would be understandable why I was not about to argue. I am not sure how to describe the state of her room – beyond the typical teenage mess. I believe that absolutely every item of clothing she owned from 6th grade forward was on the floor along with books, make up, old dolls and things she did not want. It is amazing that one of us has not broken an ankle in there. I think they actually had fun cleaning.

The girls gave me a wonderful mother’s day. They put a lot of thought into their gifts and thoughtful notes to me. I had mentioned to them on Saturday that this would be the first mother’s day in a long time that I was not going to receive a bunch of packages of cookies –specifically Lorna Doones. Zach always stashed these from the hospital for months and then wrapped a pile of them up for me each year. Well I should not divulge the source of the cookies – but let’s leave it at the girls and the nurses made sure those cookies were wrapped up for me on Sunday. I am so lucky to have Brittany and Abby.

For this week: Abby got chosen as one of the freshman soccer players to play with the J.V. team this week. Yeah Abby! I am also so thankful that the school decided to start a grief support group that meets during school hours. There are about 10 kids in it – dealing with losses of parents and siblings. I think this will be good for her. Brittany, too, has connected with a campus grief group at U of MN.

Thank you once again -with all of my heart -for your shared celebration of Sammy’s life (and Zach’s) and your understanding of the impact of absence -5 months later, 3 years later, forever.

---

Friday, May 9, 2008 12:23 PM CDT

HAPPY BIRTHDAY SAMMY

Today is Sam’s birthday! Last evening I was sleeping and heard someone say “Mom.” I did not open my eyes and just said “What?” (as in abby why are you waking me up?) Then I heard “open your eyes” and I’m thinking uh – oh what is wrong with Abby. So I opened my eyes and there were both of my girls! Brittany surprised me and came home last night. What a great surprise!!!!!

Throughout the last week the girls and I have been trying to think of all our favorite things Sam said. It’s actually pretty easy. I can still hear him saying most of these things. He was such a funny child and he, of course, knew it. I loved how dramatic he was, eyebrows raised, hands on hips, silly smiles and laughing with his entire body. Amy (his 1st speech therapist) asked a doctor of speech pathology to evaluate him when he was about 30 months because he was not talking. The doctor looked at us after the eval and said “He may not talk but he has no problem communicating.”

He was a bit irreverent and I suppose I should have been stricter. But he was so sweet with his irreverence that it was really hard to take him too seriously. I don’t feel too guilty about it since his teachers, therapists, doctors, nurses, etc. also did not take him too seriously. Once in awhile he got on my nerves but it was so short lived. By the time two hours of his nap went by I was more than ready for him to wake up and make me laugh again. He never did terribly bad things – he was simply mischievous.

Some of the below famous Sam quotes may be familiar to you – some I am sure I never shared. Some I forgot about but found in old journals. These only reflect things he said from the age of four forward as I cannot access the older memories right now. Amazing how much he said for a child who really did not talk until he was three. Most are funny but a few are rather poignant and take on new meaning through the lens of hindsight. I’ll let them speak for themselves.

He had such a gift for making others laugh. His friend Jimmy used to say just about every day at school – “Sam Juhlmann! You are such a funny guy!” And he certainly was. Today I am remembering his beautiful laughter that I can still hear and feel and see so clearly.

So endearing
“I can’t go to school with casts on! The kids will laugh at me” This despite that he had 2 double lumen central lines, a J tube, G tube, hearing aids (blue and purple at that), a rolling backpack bulging with about twelve IV pumps and bags of various fluids, etc. But the casts were new and he was mortified.

Sam: “ I figured out the one way I can get to ocean city! I can imagine myself there!" He gave me a hug, "don't worry Mama- I'll put you in my dream too so you can come with me."

On being a bird: “Soon I am going to fly away and live in my nest. Will you come with me Mama.”

I heard Sam screaming one night. “Zachary, Zachary, where are you. Don’t leave me by myself!” He was half awake and I asked him what was wrong. He was terrified and sobbing - “I was having a nightmare that Zachary was gone and I was all by myself.”

Most of his medications were intravenous through his central line. That’s all he knew. So if I ever said something like “I need some Benadryl” or “I wish I had some Valium” he said, “but you don’t have a line!” It was clear he felt so sorry for me as then he said in a very hopeful tone, “But maybe Dr. Aiken can give you one! We could ask.”

One time when he was bleeding and I could not get it to stop, we went to the ER. There were stars on the ceiling in the ER. “Lets make wishes, Sam,” I said. “I wish that you (Sam)will stop bleeding.” Sam looked at me as if I was beyond hope. “THAT’S your wish?” he asked. He was clearly not impressed. I could hear him internally saying “Humph –what kind of a wish is that?” I asked him, “Well what is yours?” “To be the yellow power ranger” he said quite definitively.

One day he asked Abby to get him the moon and stars. She made him some window clings of the moon and stars. His face lit up when he saw his window, which was right by his bed. “Mama!” he said – practically breathless. “"I asked Abby to give me the moon and stars and she did!”

With his family
In his most dramatic voice: “I’m so cold I’m afraid I’m going to turn into an ice cube.”
or
“ Get under the covers with me Mama so we don’t turn into ice cubes.”

“I love you 500 cc” (or 700 or 600 – it all depended on the day)

When I was sad or just serious - “Why are you sad?” “What’s that look for?” Then he would put his face right up to mine and give me the silliest smile he could find.

He always referred to Abby as his "little sister" – after all she was “littler” than Brittany.

On the day we bought Pancakes, the hamster: “Daddy is going to fire us for buying a pet.”

“I wish I was a hamster,” he told me. When I asked him "why?", he said, “So I could get in his cage and be his friend. DUH!”

Just about every morning he went to Pancakes’ cage and then exclaimed in shock, “Pancakes. You’re alive!” Before leaving the house he’d say, “I carry you in my heart Pancakes.”

“ZAAAAAACH! I can too be Mama’s baby. Right Mama?” Then he’d whisper to me ‘I’m not really a baby you know. Just your baby.”

Even if I was out for 10 minutes he never failed to exclaim - “Maaaaa ma! You’re home! I missed you!”

Brit, Zach and Abby thought it would be funny to teach Sam to say “I have ADD.” He did not have that diagnosis but he often told people, very proudly, “I have ADD!” I did not find that humorous but the kids sure did.

Whenever I drove him somewhere he was the little navigator. “Ok – here we do - we’re on the Fweeway now!” “Now we’re on 45 – here we go!” “Red light!” “Don’t forget the tag!” (the wheelchair placard)

If he had his feelings hurt he’d say so mournfully, “Oh that just hurts my heart!”

So hard not to laugh when he did something naughty.

He learned the word stupid and then got in the habit of calling people stupid. Very quickly he was told he could not say that. “Ok.” Pause. “You are a shut up.” At that he was told he could not call people stupid OR shut up. After that he’d look at the ground and say “stupid” and then quickly “I’m not talking to a person. I’m talking to the floor.” Big smile.

“Mama – Daddy was being mean to me!” Then when I was not looking he would give my sister or mom a big smile. He knew he had his Mama wrapped around his finger – around and around and around.

”Sam, you’re going to have to be grounded” (Grounded from TV or the computer for a day.) He always instantly responded with any or all of the below phrases:
“No – you are!”
"HAHAHA VERY funny!"
"Nice try French fry!"
“Oh REEEEE ally”

“Sam you need to go in time out.”
His response: “OH great! I LOVE time out!”
Or
“Oh yeah! We’ll see about that!”

Mama: “Sam cut it out!”
Sam: “I’m going to cut your skirt out!”

Whenever, he did something wrong, often intentionally, he would laugh and innocently say, "Oops. Sorry!" and then give a big grin.
Or
“Just kidding!” Then, “But you forgive me right?”

At other times this is how he would start confessing what occurred…"Bad news…” For example: “bad news Daddy. I ripped some wallpaper off.”

Whenever he was asked to apologize he’d say, “I’m so tired. Can I say sorry tomorrow?" The next day, the first thing out of his mouth - always – was “I’m sowwy (sorry)”

Of course there was the time he was asked to apologize to his night nurse Kris and he threw a glass of water instead. Kris was trying so hard not to laugh.

If someone told a joke he’d dramatically slap his hand on his leg and say “Good one!” After awhile this extended to other, less appropriate situations. For example if I said, “Sam, it is time for bed,” the response would be “Good one!”
or
“Sam, you are acting naughty.” and his reponse: “Good one!”

Every single day he interrupted someone reading in the middle of reading group. “Are you hot Mrs. Brooks?”

Hospital friends
Like the sentry he would always watch for people in the hall before they entered the room. “Hanens (Dr. Havens) is here! Hanens is here! Hi Hanens!” He’d practically bounce off the bed. As he got older he did add the Doctor in. Once in awhile he was very crabby and would say “I’m cwabby Dr. Hanens! I don’t want you to talk to MY mama.”

He had PT and speech at the same time. Whoever came last out of the two of them got scolded. “You’re late!”

Re: his speech therapist – “Her name is Katherine but you can call her Kaf”

“Can I call Dr. Hanens?” he asked every single time we were caught in traffic for the last few years he was alive. I have no idea why he felt this needed to be reported to Dr. Havens.

In general he loved to call Peter – usually to say I love you and something he did that day such as: “Hi Dr. ‘Hanens,’ I saw a fire truck and I wuv you. Bye.” I never let him call Peter’s cell but instead had him leave whatever he wanted to say on voicemail. Peter was great about leaving return messages and then for the next 3 days Sam repeated what Dr. H said over and over. “Dr. H said he saw a fire engine and he loves me too!”

During the entire month that he was learning colors in kindergarten he left a message that went something like this. “Hi Dr. ‘Hanens’ this is Sam Juhlmann. We’re learning about _____ (color). Are you wearing brown pants?” Then he laughed. “Bye. I wuv you.” He thought that was so funny.

The first time he got grounded (for all of a day from the T.V.) he went to therapy and said to the PT , OT and Speech therapist: “ Bad news - I got gwounded.” Of course, he did not say this as if it was bad news. He said it as if he was quite proud. Then, “did you ever get gwounded?” After that he made rounds through the hospital: “I got gwounded. Did YOU ever get gwounded?” He loved hearing stories about people being naughty when they were kids.

“Zach’s nurse! Where’s my nurse?” If Zach’s nurse tried to tell him her name he yelled “No your name is Zach’s nurse!”

After Peter was his special guest in kindergarten: “My kids love my doctor. They think he is silly!” (and they did.)

How could I say no?
When told he could not watch a movie (usually for the 20th time in a row) while grandma was visiting he would wail -“But it’s grandma’s favorite!” (As in how could you deny this to Grandma)

With big brown eyes and little hands folded together, looking up at me, he would say “Please. I’ll do anything if you …” (buy me a pet, get me French fries, let me watch the rest of Clifford, etc.) I guarantee that few could say no to that.

He loved Valium. It helped him for sure but he just loved it. When he did not feel well I suggested that he rest or that we try a different medicine. After awhile he anticipated my suggestions so he thought he’d just get them out of the way in the beginning. “My tummy hurts. And resting won’t help me and sweeping (sleeping) won’t help me. Toradel won’t help me. What will help me?” There was only one correct answer of course. If I did not think he could have it, “Well I’m calling Dr. Havens. He will tell you to give it to me!”

Dinner time
“I’m hungry. What can I eat?” This had only one or two correct answers. Typically French Fries. If I suggested something else such as “how about saltines?” He’d look at me aghast, “THAT will choke me!”

Just about every night at dinner: “Only one person can talk at a time Bwitnee (or whoever was talking aside from him) and I am the one talking.”

He always wanted to leave the dinner table and play. I told him he couldn't leave the dinner table until he said one thing to Brittany and his Dad – the only two at the dinner table that night. Incredulous, he said “BOTH? Do I have too? Can't YOU just talk to them?" Long pause and then in such a resigned tone, “Ok. If I have to.”

Words and phrases:
One time today he got very exasperated with me and said, “I’m frustrated!” and immediately after he said “what does that mean - frustrated?” I said, “well it means you’re feeling a little crabby about things” and he said, “Yes, I am FRUSTRATED CRABBY!”

I read the Barney Easter book to him one night. When we got to the part about dying Easter eggs he asked why the eggs have to go to heaven on Easter? I explained that
dying meant that we would be coloring the eggs. He looked at me with such
disgust and said "but that's not a good idea. I don't like crayons!"

”What is a president Mama?” he asked one Sunday when we were reading his Times for Kids. “Well, kind of like the boss of the country.” He looked at me like I had just said something blasmephous – “ George Bush is not the boss of the country. I am!”

The kids asked what fastidious meant and I told them to look it up in the dictionary. They looked it up and decided that Sam was fastidious.
“Sammy – you are fastidious!”
“I am not!” he yelled
“Yes you are. You’re fastidious.”
“Kids!” he yelled “Mama is the prettiest -not me!”
I said the words very carefully so he could hear the difference. I told him what fastidious meant and he proudly agreed he was fastidious.
After that he thought it was really fun to say “I am fastidious but Mama is the prettiest.”
One day he said “Hanens (Dr. Havens) is fastidious like me.” I really do not know why he thought that but from that point one, he would tell Peter, “Mama is the prettiest but we’re fastidious.”
He was only 4 yrs old.

Before long this became the dinner prayer every single night for years. “Dear God. Thank you that I am fastidious, Mama is the prettiest, Daddy is the funniest, Brittany is the coolest, Zach is the smartest and Abby is the sweetest. And then he’d go back through it with Help me be fastidious, Help Mama be the…. Amen” (He always forgot to say thank you for the food itself.)

Apparently he heard “Amen” as “A man.” We found out when, being the equal opportunity guy he was, he said the prayer one night and ended with “A lady!” He laughed and laughed at his own joke though it took us some time to get it.

One night the kids were wondering what was on T.V. Sam said, “"I know! I know! Let's ask the TV man! This confused us – “The who?” He replied “The T.V. GUY” (You could tell he thought we all fell off the truck and hit our heads.) And then, exasperated, he got up, walked over to the basket where we keep magazines and found the T.V. guide. “Guys” he said waving it at us, “The T.V. Guy!”

He had favorite phrases. Most were from his movies but I have no idea where some came from. He usually used them out of the blue or inappropriately but he was really proud of them.

...”Don't look at me. I'm not the one getting a nose ring!" –this he said ALL the time – at least 10 times a day. It’s a line from Buzz Light Year.

...“Never give up!”

...“Evil never wins!”

...“Oh yeah! Wanna fight about it!”

...“Mama -he’s not dead!” (This was something he heard wrong from the Emperor’s New Groove and he thought it was the funniest thing to say.)

...“Liar Liar pants on fire!”

...“Yeah -well what’s YOUR idea?”

...Every morning he pulled the insert out of his IV Levothyroxine (medicine), opened it up and proclaimed, “It says COFFEE!” Then he’d laugh his head off.

Between sunset and sunrise
“Abby can I borrow Yes-Q?” Rescue was Abby’s stuffed dog. Sam, of course, had dozens of dogs but he wanted to borrow “yes-Q” every night. She always let him sleep with Rescue.

“Oh yuck -girl germs!” Often said when the girls or I kissed him.

“But I can’t sleep without my best brother!” In protest that he went to bed before Zach. Most of the time he popped right up the minute Zach came into the room 30-60 minutes later. He was bound and determined not to sleep without Zach.

He LOVED Benadryl – intravenous. He woke up every single night at 3 or 4 am for the last few years of his life and asked for Benadryl. “Where’s my Benadryl?”

After the Benadryl if he still could not sleep he would very cheerfully yell, “Maaaaa- ma – Daaaa –dee – Bwit-nEEEE – Zaaak - we - Aaaaa-be – I’m up!” over and over and over -not whining – just letting us know that even if it was 4 am he was up.

He woke up very early – before sunrise usually. For a long time he woke Zach up with a loud voice. “Is Zach up?” Since they slept in the same room, it was perfectly obvious to him that Zach was not up. “Zach’s nurse!” he’d yell in the hospital. “When is Zach going to wake up?”

As he got older he understood that he should let Zach sleep. So he whispered louder than a whisper is meant to be –“Mama -are you so proud of me. I did not wake Zach up!” or “Shhh birdies -you’re going to wake my bwother Zach up.” He would look at me and giggle and put his finger to his lips….he thought he was being so quiet.

At home he watched his door way and he would say in that very loud whisper -"I just saw Brittany! Was that Brittany? Did you see Brittany?" and he'd say this every one of the multiple times Brittany walked past his doorway. If Brittany told him to be quiet he’d tell “NO! I will NOT be quiet Brittany?"

*****
Out of all of those the one that touched me the most was one I had forgotten: “I was having a nightmare that Zachary was gone and I was all by myself.” And I offer up a silent prayer - please let them at least have found each other. Please let them be together.

Sammy -
I love you a zillion liters. You are fastidious and I am the LUCKIEST to be your Mama. Thank you for laughing so much and for making everyone around you laugh. We still laugh when we think about you./b>

~Mama

---

Tuesday, May 6, 2008 3:49 PM CDT

A child with sickle cells disease lives because someone donates blood for his/her scheduled transfusions. A soldier stops bleeding and survives because somewhere in the world someone donated platelets and plasma. A new mother in heart failure is given the gift of time – will watch her infant grow older – because the family of a dying teenager made the decision to donate his heart and other organs. A teenager has hope because an unrelated bone marrow donor has been found through the national bone marrow registry.

The act of bestowing those gifts of life cannot and should not be diminished. Those who do so are truly heroes – but not because of the act itself. Rather it is the willingness to give and do what one can whenever one can that marks a hero. I am afraid we do not say that enough or if we do we say it as a passing after thought. As if there are degrees of being a hero. As if the end is all that matters. But think about it:

In what way is the person who donated blood different than the person who got turned away because of low iron levels? Both woke up, made a conscious decision to carve out time in their schedule to donate blood, traveled to the donation site and stood in line. They both chose to give the gift of life. Do we truly think that the difference between a hemoglobin level of 10 and one of 13 is the difference between a non-hero and a hero?

What about my friend and colleague, Meg, who got turned down for giving blood for years? Last week she was so excited because finally after trying endlessly to get her iron levels up, going to blood drive after blood drive with hope that this would be the time, finally she was able to give blood. Was she a hero last week? Or had she been a hero all along?

Two physicians care for two children in the ICU. One physician provides the standard of care – nothing more and nothing less. The child survives, grows up and becomes a millionaire. One physician provides care that goes far beyond the standard of care. He spends hours consulting others, reading the latest literature, talking with and supporting the family, talking to the child, giving up his own family time and ultimately loving that child so much that he gave a piece of himself. The child dies. Who is the hero? The one who “cured the child?” Or could it be the one who did not cure but healed the child and family all the same?

Who is a hero? That is the title of a document that I found recently – written by Zach. It is unfinished. Someday I wish share it for it is beautiful. Today I wish to answer the question myself by telling you this: My daughter, Brittany, is a hero and these are the reasons why.

At the age of 18 my daughter watched her brother’s heart arrest. She watched him get carried out of the house and when I came home a few hours later, arms empty, and collapsed on the floor she watched that too. A month later she worked hour after hour, along side others in our community, to plan the first Walk and Run to Wipe out Mito, which raised over $20,000.

At the age of twenty Brittany came home one weekend to visit her brother. Three days later he was in an ICU on life support where he remained for the next 8 weeks of his life. To say he was critically ill is an understatement. She desperately wanted to be by his side. School was the last place she wanted to be. I begged her to stay in school because she cannot go without medical insurance for even one day. Her insurance is contingent on her full time student status -she loses it if she takes a leave from school.

So she remained enrolled full time. Can you imagine how out of control the world would feel without being able to see and touch her brother every day? Can you imagine concentrating on science or math or anything when your heart is in PICU Room 4? Can you imagine being twenty, all by yourself without family, with only one friend from high school that knew your brothers – and now facing the possibility that your 2nd brother might die? Would your heart drop every time the phone rang? Or when your mom did not pick up the phone?

I wonder if my response would have been hers. She continued to volunteer at the Ronald McDonald House week after week, she helped baby-sit children for families who had a child in the hospital, she went to her classes and passed every single one -and not just with D’s but with solidly good grades. She volunteered to be tested to see if she could donate a kidney to a two year old that she barely knew.

A hero keeps on going, continues to look for ways to make a difference no matter what challenges they face. They forge new paths when they encounter obstacles. They may walk slowly for a time but they never stop and they most certainly never sit down -even amidst their own devastating circumstances.

After Zach passed away she found out she was a good match for the two year old that needed the kidney. She continued to be tested. The family referred to her as their “hero” on their website. Which she was. Which she is. And then she learned the devastating news – she could not donate her kidney due to her own medical needs. I cannot even begin to describe how she felt when she learned that news. She was absolutely crushed.

Interruption:
And now I need to wander off the subject - a brief break – because I think it is important to answer this question: How did the transplant center handle that news? Well the transplant center did not offer any help to her in how to tell the child’s family the news. They knew the family was aware of who the potential donor was (Brittany had told the family) but left a twenty year old to find a way to say the words she never wanted to say. I cannot give him my kidney. The center did not check on her the next day or the next week to make sure she was okay emotionally. Are they so obtuse that they cannot imagine the emotions she felt? Or just uncaring?

Of course the way they handled it afterwards should not be a surprise because they never handled it well, in my opinion, from the first day. The transplant center failed to properly screen her when she initially called. She told them everything that should have raised a red flag but somehow the flags did not get raised. They failed to read her answers to their own questionnaire. Had they done so none of the testing would have been done. Instead, she had her blood drawn and they immediately pronounced her as “the perfect match” and called the family to say the same (without revealing her name of course). In those actions they set both the family and my daughter on a course fraught with emotions and expectations.

The staff apparently did not give her email a second thought when she wrote to say her 2nd brother had just passed away. Really, this is a true story – they did not. They just continued to have her come in for blood tests and continued to pronounce her as the "perfect match." Yet when she could not donate for medical reasons she was no longer “the hero.” She was not even worth a follow up phone call or an offer to call her primary physician. As if all that mattered was the outcome and not the fact that she offered to help someone else during the worst moments of her life – that she would have jeopardized her own health for that child.

I personally have enormous ethical questions about the way the whole thing was and is being handled. I have questions for a health care team that dismissed or disregarded the vulnerability of a young woman who’s 2nd brother had died a month prior. I have questions for a team that set her up psychologically as the "perfect match,” put her through invasive testing (not to mention radiation exposure) and then and only then actually had a physician assess her.

They never thought to read her records from their own hospital clinics let alone request them from home? Talk to her cardiologist right there at the same hospital? Supposedly they did talk with the geneticist **that day** after she had an EKG and chest x-ray and countless lab tests. After they told her she was a perfect match. I do think we have the world’s greatest residents but still…they’re residents and even they know enough to assess before ordering tests, to request records on anyone with a medical history and to manage expectations.

How did they tell her -what did they tell her - as to why she could not donate? Yes, you thought this story was good but now it gets even better. Their explanation is so ridiculous that I actually asked her to repeat it - many times . They told her that "she could develop diabetes." Excuse me? Can I gag? cough? throw up? smack someone? How about there are mitochondria in every part of the body and the stress of removing a kidney could push you into a whole cascade of events, culminating in multi organ failure and your death or at the least will likely leave you with a disease far more progressed than it is currently… and we are sorry that we were too busy or too preoccupied to read your questionnaire or too proud to ask what the heck is a mitochondrial disease. Otherwise, we would have known that you were not the perfect match before we put you through this emotional hell. And no, Brittany, we're not being dramatic because we finally called your doctors and we're not really sure what they said because our ears were still ringing from them yelling, "You have got to be kidding? You want to take her kidney? What are you thinking?"

Her doctors at home were in shock that this could have happened –especially when she has records at the transplant team's own hospital. Brittany did not and could not have understood the risk because we never had those discussions. She could not have known but physicians and nurses should have understood, could have understood with minimal effort - 2 brother dying is a pretty good clue.

Am I angry? Oh yes – very much so because I have watched my daughter get hurt so needlessly due to that particular health care team’s actions and lack of ethical oversight. She does not tell this part of the story but it is important. For within that context, the way she handled herself afterwards is yet more proof of her every day heroism. And so now my not so brief interruption is over and I am returning to Brittany. The next part is about my daughter the marathon runner – not ever a sprinter.

End of interruption

Brittany is not angry. She is not bitter. She stands in such sharp contrast to me for she has chosen not to spend energy on anger -rather she has spent it on standing tall and walking a different path. Me -I rant and rave and write letters and rip them up and have thought about buying voodoo dolls, which I will name “transplant team” and then poke them repeatedly, remove their insides and hang them from a chandelier and set it swinging back and forth and ..well...you get the basic gist of my response.

Brittany - She battled past her own limitations and found other ways to make a difference for the child and his family. She went to at least ten different media sources trying to get the word out about the child’s need. She told no one but me about this. She just quietly went and did it - hours and hours of contacting the media - without singing her own praises.

She shared her story on T.V. What twenty-year-old, wants to share their medical information with the world? She, like most young adults her age, has been fiercely protective of her own medical status. You’ll notice that I do not share anything about her medically on this site unless she tells me it is ok. Yet she told the story on T.V and posted the plea on her own face book page in hope that it would help the child. Empathy is taking the focus off you and putting it on to another. She is a living example of empathy.

She struggled to accept the meaning in being the “perfect match” and yet not being healthy enough to be that match. But all the while she struggled and fought to understand and accept what she could not change she persisted in her effort to help that little boy and his family. Now twenty-one, she befriended his healthy sister who, at the age of 14 just wanted to be home with her friends. It’s not hard to imagine how welcome Brittany would be to a 14 yr old girl who has a bunch of ten and under children around her all day every day. She, at times, helped his healthy brother with homework – just as she had done with her own brothers. She spent time with his mom who had been living in the Ronald McDonald house for over a year. She babysat, she visited them in the hospital, she did little and big kind things for them.

How hard to be called “the hero” and lauded as the perfect match and then watch helplessly as another child you love gets sick and there is nothing you can do to stop it. Can you imagine looking that mom in the eyes day after day when they could not find another donor? It would hurt. I’d be tempted to walk away if in her shoes. She chose to stay and make a difference. As of today he does have a living donor and will get his transplant in the near future. Brit so wanted to be the one but she is so thankful that he will have this chance to get off dialysis and I know she will stay by that child’s side, no matter what, because she is not a sprinter - she is a marathon runner.

In the last few weeks, Brittany and a few college friends have started working on an idea that she inspired – a month of getting the community involved in serving and giving through a multitude of activities in the Minneapolis area. Prasanna, her longtime friend from home, is also part of this planning group. (Prasanna is also my hero. Her personal circumstances are different but she is another young woman who lights the world with her desire to help others)

My daughter is a hero because she never ceases to imagine possibilities that make a difference. Once imagined, she rolls up her sleeves and does the hard work; in doing so she inspires others to do the same -turning the improbable into possible, ideas into imaginative intervention and diverse pieces into a complete picture. Brittany is a hero because she channels the power of her extraordinary love and empathy into endless energy and action. This has allowed her to become the first living heart, soul and mind donor. She freely gives a piece of her heart to others despite knowing that she may end up hurt in the process. She considers this worth the price of being real. She infuses endless enthusiasm and passion into the community - becoming - in effect - a soul donor. And her extraordinary mind is a brilliant benefaction to the community.

My kids always make fun of me for constantly reminding them that we are related to T-Rex (Teddy Rex Roosevelt). Hey it is our one and only claim to fame. So I will close with a quote from our dear cousin Teddy (can you hear my kids laughing now?)

“The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood, who strives valiantly, who errs and comes up short again and again, because there is no effort without error or shortcoming, but who knows the great enthusiasms, the great devotions, who spends himself for a worthy cause; who, at the best, knows, in the end, the triumph of high achievement, and who, at the worst, if he fails, at least he fails while daring greatly, so that his place shall never be with those cold and timid souls who knew neither victory nor defeat."

Theodore Roosevelt
"Citizenship in a Republic,"
Speech at the Sorbonne, Paris, April 23, 1910

Sunday, May 4, 2008 9:49 PM CDT

This morning I woke up at 4:50 am because the birds were so loud. It’s hard to be annoyed with that. It’s a welcome sound.

Abby has been sick. Whatever she has came on rather suddenly Thursday. She had bit of a sore throat at the orthodontist and by the time the appointment was done and we got through the hospital tunnel she was shaking with cold and very weak. Yes, she had a fever, which is always something I watch closely with her. The fever is gone and she is feeling well enough to go to school Monday. I have had a sore throat since this afternoon. I hope it does not progress to anything else.

*****
Happy Nurses’ Week to the amazing nurses we know.

*****
Friday, May 9th, is Samuel Patrick’s birthday. Sam - my mother’s day baby.

*****
Every spring Wisconsin has a large statewide conference called Circles of Life - dedicated to children and youth with special health care needs, their providers and families. Abby and I gave the keynote in 2005, 6 weeks after Sam passed away. This past spring, one of the conference planners, Linda, asked if she could write and include a dedication to the boys in the Keepsake Program. Well, of course, I said yes.

Linda gave me permission to share the following from her initial email:
I really want to honor Zach and Sam, and your family and the positive
impact you all have had on the care of children with special health
care needs. There is no doubt in my mind that many, many families have
benefited from the teaching you have provided to the many providers who
have been privileged to work with you and your boys through the years.

I was also very moved by your work around blood donation. My son Mitch
has received several transfusions over the years. You don't have 50
surgeries without a few. But all of his transfusion occurred during big
surgeries that were planned well in advance. Even though he has a
relatively rare blood type (B-) we never worried about not having blood
for him, because we were able to plan ahead. His emergency surgeries
were never the kind where he needed transfusions. So I never really
thought blood donation and what it meant until I read your caringbridge
page and saw the video you put together and read about your boys. It
completely changed my attitude towards giving blood. I will be donating
now whenever the opportunity comes up.

Thank you Linda. It is beautiful and your gesture touched me so deeply. It means so much to me that you have remembered my boys and the dedicated group of people who surrounded them. By the end of their lives this group of people numbered well into the hundreds. Hundreds of people working together to make an enormous difference in their lives -and mine.

Below is the dedication. I did lose some of the formatting in trying to copy it to this website but the words are what counts.

IN MEMORY

Samuel Patrick Juhlmann
May 31, 2997--March 3, 2005

&

Zachary Ryan Juhlmann
April 20, 1992 --November 27, 2007

We know that children are a rejuvenating wellspring of love and wonder, and caring for them nurtures us as well as them. We know that our work results in more laugher, more discovery, more sleepovers, more birthdays, more cupcakes, more dances, more graduations and eventually more of us.

~Dr. Robert Hickey


Many Circles of Life participants first learned of Zach and Sam in 2005 when the boys’ Mom Anne and sister Abby gave the keynote address. The boys were affected by mitochondrial disease, a disease of energy deficiency. Although short in years, the boys’ lives were rich in love, adventures, experiences and fun. This was possible through the support of their amazing family, a dedicated team of health care providers and committed members of their school and neighborhood communities. And the thousands of people who give blood each year. Both Zach and Sam required hundreds of blood transfusions in their lifetimes, most donated by volunteers like you. Learn more about Zach and Sam and the importance of blood donation at their web site http://www.caringbridge.org/wi/zachsam
Please give blood!



Best Brothers, Zach and Sam

join my Notify List and get email when I update my site:

email:

Powered by NotifyList.com

---

Sunday, April 27, 2008 9:50 PM CDT

I have been told many times "I did not receive an update notice for the site." The reason for that is that we have an older model caringbridge site so update notices do not go out automatically like with the new ones. And I guess it feels funny to me to send them out for regular posts although sometimes I do for things like birthdays or when I made the "How to Save a Life" montage. So please just check every now and then and I'll do my best to leave a week's worth of posts on the front page. I hope that is ok.

***

I was going to write “sorry for being so depressing. ” Then I decided that would be disingenuous. Yes, of course I wish I was not sad…but it is silly for me to think I need to apologize for being sad that my children are not here. What I feel is normal.

I don’t think we say that enough – it’s okay to be sad. Losing someone we love is not okay and it’s not ever going to be okay. That does not mean we don’t have to find a way to live in this “not okay” situation. But it’s not as simple as taking comfort in our memories or nice platitudes like “time heals.”

I think that when people see or hear about me doing “normal” things it is so easy to forget or to think things are going well. And I am guilty of perpetuating that myth because I know it is what people want. They want me to be okay. Never ending sadness is not in most people’s repertoire of things with which they feel comfortable. I’m not even comfortable with it. If someone is sad I want to fix it because seeing someone hurt is hard.

But I have learned that some things cannot be fixed. Grief - when a child or any loved one dies - is not a treatable disease. It is not depression. It is not pathological. It is not something for which a person can pull themselves up by the bootstraps. And frankly, the extreme aversion and avoidance of anything sad or unpleasant makes me wonder if we have totally lost touch with our humanity. Humanity is sorrow, joy, courage, fear, love, anger, envy, compassion, etc. If we turn away from the parts of humanity that are not pretty and make us uncomfortable than we will never fully know the joy and meaning and beauty of life.

When someone dies, no one chooses to be sad. No one chooses to have trouble focusing at work and no one wakes up and says “Hmmm, I think I’ll have a sad day today” anymore than they choose to wake up and have a good day. If it were a choice, be assured that everyone would choose the good day for nothing about this is remotely entertaining.

Like Zach, when he proclaimed that no, he was not feeling good but he was **trying** to feel good, (despite his wheelchair running over him, which caused a great deal of pain) - I think it is important for me to be honest when I don’t feel good. I’m not very good at that. Yet I also think Zach had the right idea in trying his best to feel good. Both boys cherished and valued the good moments when they came. If those moments could be bottled and taken as an antidote to sorrow, well then, I’d be on that prescription plan. But it doesn’t work that way. Instead I remember the moments when things are bad. They remind me that no matter how much I hurt and miss my boys, the life they fought so hard to live is still worth living. Finding joy when you can, where you can is the closest I think anyone can come to controlling how the day will go. Zach and Sam had it down to an art. I am still learning.

Sunday night, after writing about not sleeping, I had the most amazing solid block of sleep -something like 5 hours without waking up once – maybe even 6.

My calendar at work Monday was depressing. Back to back to back meetings until 5 PM. But I got to work Monday and one after one the meetings all started falling away. I ended up with only two. How great is that? The best part was that it allowed me to be at the last half of Abby’s soccer game. Afterwards we went to dinner, bought a pie, came home and ate very large pieces of the pie. Watching her play soccer and spending some time with her was good and for that I am so very thankful.

Tuesday I had lunch with Sam and Zach’s speech, occupational and physical therapists. We laughed and had fun. I miss them and it was good to see them.

Before lunch I did something with the Blood Center of Wisconsin, which I will post about later this week. It was quite the experience and also very meaningful to me. Sam and Zach are living on in wonderful ways and today reminded me of that. You’ll have to stay tuned for more on what I did.

Today is Wednesday. I am teaching some residents about preparing for medical emergencies – something near and dear to my heart given the lessons learned in the worst possible way with Sam. It is so hard to tell that story -so painful. But I also feel some sense of hope when I am done. The residents have never learned some of the things that we never knew either until Sam died. My hope comes from their new understanding of how important these issues are. I wish it had never happened. I’d much rather be in the dark about the complexities of the EMS system. But it did happen and in that scenario, the best thing I can think of is that Sam’s story be used to change the outcome for other children.
.
The best part of today - I am leaving work at 4 PM sharp. I have already informed the people with whom I have a standing 3 to 5 PM Wednesday meeting that I have a much more pressing engagement to get to and thankfully the people I work with understand these things matter. For Abby has a soccer game and if I leave at 4 I just may see most of it! The sun is shining. I will probably cry on the way to work like I do every Wednesday, without Zach going to therapy. I will probably feel sick with grief at some point today. I'm sure there will be a point when I want to quit work and run away on Amtrak as if I could run from sadness. But right now -this moment - I am looking forward to watching my daughter play soccer. She never complained that I could not go for so many years so it means a lot to me that I have the chance to be there now.

Sunday, April 27, 2008 9:50 PM CDT

I’ve been reading “Wind, Sand and Stars” by Antoine De Saint Exupery. He is better known for his beautiful book “The Little Prince.” The below is from “Wind, Sand and Stars:”

“I thought of our respect for the dead. I thought of the whole white sanitarium where the light of a man’s life goes quietly out in the presence of those who love him and who garner as if it were an inestimable treasure his last words, his ultimate smile. How right they are! Seeing that this same whole is never again to take shape in the world. Never again will be heard exactly that note of laughter, that intonation of voice, that quality of repartee. Each individual is a miracle, no wonder we go on speaking of the dead for years.”

***

It has been 5 months since Zach passed away. The sun has set 152 times since I held his hand, warm with blood coursing through it. 152 nights that I have not tucked him into bed, checked on him before I went to bed.

When he was at home I slept with a baby monitor so that I could hear his breathing and the medical monitors. When he was at the hospital I slept a few feet away from him. Wherever he was, I woke throughout the night to the sound of his breathing – and fell back asleep, reassured by that ever present sound. Zach and Sam were never quiet at night. Most nights one could often hear their breathing several rooms or a house level away. The nights that were quiet – I worried.

Even when Zach was in the ICU, intubated and on the vent, the sound of the vent comforted me while he slept. For the last 152 nights I have had trouble falling asleep and when/if I do it rarely lasts for more than an hour at a time. The house is so quiet and dark; the stillness and dark evoke a cold that does not go away and taken together, the darkness, silence and cold are reminiscent of things I wish and wish that I could forget. Cold lips, blue coffin, then a black one, side by side graves. Without the reassuring and constant sound of life - Zach (and Sam) breathing – the memories, questions and fears that come with night often swallow me and obscure any light that I found during the day.

152 times the sun has inexplicably risen since I smoothed Zach’s hair back and felt the beat of his heart. It has been 153 days since he blinked his eyes at me, and 156 since he squeezed my hand – ever so slightly. I don’t want to count how many times the sun has risen since I heard his voice and laughter, felt his hug and firm hand grasp, watched him play his games or attend to his school work. I don’t want to count but I know it was October 3, 2007. How many times has the sun risen since Sam said “I love you Mama.” I don’t have the desire to count up the days for that either. I am still trying to understand how he could have died 7 hours and 55 minutes after saying those words.

There is absolutely nothing that can prepare a mother for losing her children. "Do you want to do compressions or not if his heart stops?" "Do you want to have him on a ventilator if he stops breathing?" "Do you want to give him medications if he loses his blood pressure?" These are the questions parents like me get asked. They are good, if hard, questions and ensuing conversations. Their doctor was the most compassionate, patient, non-judgmental, supportive person with whom I can imagine having those conversations. But nothing prepared me for silence and how it swallows memories, sunlight, friendships, sleep, music, breathing, strength and ultimately how it threatens to swallow me.

I think it is one of life’s miracles that one can survive this and keep waking up and facing the sunrise and sunset, day after day, time increasing the distance between what was and what is. It certainly is not because I am willing it to occur. The only conclusion I can come to is that the strength comes from the fact that the strongest, most visceral memory I have is that of my boys waking up nearly every day with smiles, laughter and enthusiasm – no matter what threatened to swallow their physical lives.

***

Last weekend Abby and I went to Minneapolis to see Brittany. Friday April 18 was the day of the Undergraduate Symposium: celebrating student creativity, performance, public engagement, research and scholarship.

To back up, Brittany applied for grant money last fall through a U of MN program called Undergraduate Research Opportunities Program (UROP). The grant was awarded. The title – are you ready? – Evaluation of Metabolic Inhibitor of the Adipocyte FABP as Potential Anti-diabetes Drugs. In plain English her research is one part of a larger whole looking at a substance that interferes with the release of free fatty acids into the blood. This substance may ultimately be a potential treatment for Type 2 Diabetes. It is far more detailed than that and everyone involved has put a tremendous amount of thought, effort, time and tedium into this project. I am definitely not doing their work justice.

At any rate, she submitted a poster presentation abstract which was approved for the symposium. This is a huge deal for undergraduates to present a poster - even at a university sponsored event. Her poster looked very professional and she was extremely confident and articulate in explaining her research dozens and dozens of times to students and faculty at the symposium. I was and am so proud of her! There is a good chance they will submit a paper for publication within the next year. If so, she will likely be one of the authors -another huge achievement for an undergraduate. Really huge in the scientific research world.

The energy and vitality in that room was the most inspiring thing I have felt in a long time. With very few exceptions these young adults were personable, enthusiastic about their work and able to explain it in a reasonably organized manner. The symposium was well attended by all sorts of students, which I never would have expected, Faculty was also quite present – another surprise. One could not help but think – this is our future and aren't we the lucky ones to have a future like this! I hope they can retain their curiosity, spirit and drive and infuse our world with it. We sorely need it.

Other than that we ate a lot, talked a lot, watched movies and took innumerable walks. It was enough to see Brittany. Abby and I took the train there and back, which ended up being wonderful. If I could choose between a plane and a train, if time did not matter, I would choose the train every time. What a refreshing experience to have the people providing service sit down and talk with you, joke and want to make your trip as good as it can be. And how nice to be able to both talk with one's co-passengers and yet also have the freedom to leave one's seat, sit in the sight seeing lounge and shut it all out while watching the world go by. I’ve always loved the train but it’s been a long time since I have taken a trip beyond the two hour trip to Chicago. So now I have a plan B. If I get tired of working at Children’s Hospital I am going to be a porter on Amtrak.

---

Monday, April 21, 2008 9;37 PM CDT

I believe I have written about Laura before on Zach’s birthday because April 20th is also Laura’s birthday. Laura is a beautiful girl who lived in Waukesha with her family until she passed away on July 3, 2005 - 4 months to the day after Sam passed away. Like Zach she was born in 1992 and so she would have been 16 yesterday. I never got to meet Laura though she was well known in our community and I followed her story the last few months of her life. Laura had a brain tumor that took her health, her vision and ultimately her life. Yet by all accounts she was an inspiration to everyone around her. She accepted and learned to deal with being blind and displayed courage beyond anything I can imagine – especially from a child her age. There is a place for Laura in the same cemetery that my boys are buried. I hate to say this but somehow that brings me comfort. Often when Laura’s mom, Elizabeth, shares something about Laura with me or vice versa, we find it remarkable how similar these two kids are. Both were so accepting of what life dealt to them and yet both lived life with such passion. Her favorite color is purple and she loved Coldstone Creamery ice cream just like Zach – these are just a few things they share. The one area they are not alike: Zach HATED to sing while Laura, who had an amazing voice, loved to do so.

Yesterday her mom and I exchanged emails. This is a portion of Elizabeth’s: “We did take a superhero balloon and placed it by Zach’s site...I know going there is hard for you (from things you have said), so I wanted you to know, we always remember Zach also.”

This meant so much to me. I did not get home from the train station until 2:30 PM. And though I wanted to go to the cemetery…I just could not. Later I felt bad and right about at that moment Elizabeth sent her email. It may seem silly but it made my day to know that he had a balloon out there just for him. Thank you Elizabeth and family!

I never had a hard time going to the cemetery after Sam passed away. I went almost every day. With Zach it has been different. Part of it was the frozen ground. Zach was buried in the winter with the funeral flowers on top of the site. It was beautiful when they were alive but of course they died rather quickly. Yet they were stuck in the frozen ground and try as I might I could never pull them out. It started to really get to me…. these very dead flowers and plants that I could not remove. I dreaded going there and seeing that each time. A few weeks ago I was finally able to clean everything up but the site still looks painfully fresh and new -a consequence, I suppose, of a winter burial. With Sam I planted flowers within months. Tomorrow morning I plan to go and see Zach’s balloon and I am looking forward to finding the perfect flowers in a few weeks to make things “more Zach.” Do they make such a thing as a Darth Vader flower?

Thank you so much for all of the kind words, remembrances, flowers and donations. It was a hard day and I have promised myself that from here on out, we will continue to have an all day birthday party for the boys and spent the day with family and friends - just as we always did. It was too quiet and too hollow. I thought I would not be able to deal with visitors but realize now that a party with the people he loves is exactly what I need. We did have a Coldstone Creamery cake and chili yesterday -and the chili was sufficiently spicy. Still - I know Zach would have called Abby and I wimps for thinking the chili was spicy!

****************************
Written by Brittany - 20, April, 2008 03:00 AM

Today is Zach’s Birthday. I am having an especially hard time with this day because, for all of us who knew Zach, this was one of his favorite days of the year. Literally MONTHS ahead of time, he would have a birthday list made of everything he wanted us to buy him. Being a procrastinator, I would call him a few days before his birthday and ask him what he wanted me to get him. He would say, “Wellllll…..if you look at my wish list, I want a ____ and a ____ and a ____……….” As always, I would interrupt him and say, “You have a five dollar limit- if you can’t think of a present that is five dollars or less, I’m just going to go to the dollar store and buy the first thing I see.” I was such a nice sister. It wasn’t just the presents. Zach always had a full plan of what we were going to eat on his birthday- he had each meal PLUS snacks planned- it was quite the affair.

As April 20th has approached this year, I have been racking my brain for something to do to commemorate this day. I have thought along the lines of doing things Zach liked (legos, cards, art), eating foods Zach enjoyed (smoothies, hot Doritos, weird fruit juices), or doing a community event (such as a blood drive). Nothing seems to be the “right” thing and I guess that is because the RIGHT thing would be for Zach to be HERE with all of his family. I still think I may draw some pictures and drink a smoothie today and I do want to put a blood drive together in the future but those things don’t really make the pain go away.

I miss Zach so much. Yesterday my mom, sister, and I were talking about going on amusement park rides and it occurred to me that if my family is ever again at an amusement park, I don’t know who will go on the rides with me- that was something Zach and I did together. We would go on the roller coasters while everyone else did the merry-go-round (lame) and Ferris wheel (even lamer). That made me so sad. It was even sadder when we walked to downtown Minneapolis and saw a class being taught on “designing video games”- something I really thought Zach was going to make a career out of. Then we saw that his favorite place in all of Minneapolis- this comic book store- was closed for good. I guess everything for the rest of my life will continue to remind me of my brothers and while I want to always remember everything about them, it is not always easy.

-Zach’s BIG sister Brit-tan-ny

*************

Sunday, April 20, 2008 0:15 AM CDT


HAPPY BIRTHDAY ZACHARY RYAN
THE ONE AND ONLY
LOVE,
MAMA


Today it is Zachary's birthday. I am posting something that Zach wrote about himself. It was written on the Sunday before he had his thyroid resection. At the time, we thought there was a good chance that he would end up in the ICU immediately after the surgery. Given he had spent so little time there, I thought it would be good if HE introduced himself...so that the staff would get a sense of what a neat person he was - with an awesome personality and a life of quality filled with hope and dreams. He was not just a "case." I asked him to write it and this is what he wrote.

On Sept. 26th when he had the surgery, he did so much better than expected. He did not go to the ICU and I promptly forgot about his introduction. And then a week later, he arrested (October 3rd)and he ended up in the ICU. His intro about himself was the furthest thing from my mind. Nor did I remember it the entire time he was there. I found it about a month after he passed away. It is so Zach. Perhaps later this week I'll explain some of the "jokes" such as the pressure dressings, the cheating, the androgel, etc.

What a wonderful boy/child/person. And how lucky I was to have him in my life - as my child. I always looked forward on his birthdays - forward toward all the things I knew he would do and all the things I knew he would accomplish each year. I suppose this year I am looking backwards...he did accomplish a lot and continued, throughout his life, to grow into someone that I truly wish to emulate on so many different levels. I miss him so much - he is my son but aside from that he was and is such an amazing person who taught me so much.

Happy Birthday Dear Zachary. I was so lucky to be your Mama and to be so especially loved by you. I will never stop being thankful for that. You are the One and Only and I am your Mama forever. And I promise, Zachary, that where ever you are, wherever Sam is, I wil find you both.


*********
September 23, 2007

My name is Zachary Ryan Juhlmann but you can call me Zach. My mom thought it would be good if I told you about me since I have only been to the ICU a few times.

I am 15 ½ (or I will be on Oct. 20th because my birthday is April 20th). I live with my mom and dad. Also I have an older sister named Brittany. She is 20 and in her 3rd year of college in Minneapolis. She is a lot nicer now than she was in high school. I also have a sister named Abby, who is 14. She is younger than me but she acts like she is older. She is the only 9th grader I know that likes school and never wants to miss her classes. My little brother is named Sam. He is funny and loves dogs and french fries. Sam’s body died when he was almost 8 years old.

I am a freshman at Waukesha West High School. I go to school part time. Two days a week I stay home and my homebound teacher, Donna, comes to work with me. She also comes to the hospital to teach me when I am in the hospital. My favorite classes are Ceramics and Personal Finance. Some of school is boring. For instance some of the books we have to read are just not good but if my mom reads to me that makes some of the boring books better. I know how to read but that explains why you might see her reading to me.

At home I like to play chess and video games. I hope that I get a Nintendo Wii for Christmas. I am pretty sure I have my mom talked into it. I really like to do art projects – especially ceramics and drawing with charcoal pencils. I like to play jokes and my mom falls for everything. I also like anything and everything to do with Star Wars. I like to cook muffins, cake and cookies. I like playing games which I do with my mom in the hospital. When I grow up I am NOT going to get married. I would like to be a surgeon or a pediatric nurse. But most of all I would like to be a game designer for video and board games.

The reason I might be in the ICU is I have a lump which I cannot feel in my neck but it is there and we think it is making my bones weak and my back hurt. So it is good Dr. Jokel found it because if we take it out then maybe my back will be better and I can go to Universal Studios and on any ride I want.

I don’t mind coming to the hospital – especially during the school year since I can take off from school. Here are some important things you should know about me being in the hospital:
1. My mom NEVER leaves me in the hospital so I guarantee she will not leave the ICU even though you do not have beds for parents. She takes off work when I am in the hospital. Just find her a cot or something.

2. I really like it when Anne, the art therapist or Kristin, the child life bring me things to do and visit me.

3. Jackie and Chris are OT and PT and they come too. I have known them ever since Sam was a baby.

4. I like to talk with Dr. Havens and we like to gang up on my mom. We’re just kidding of course but she’s so gulible. He will come every day. Dr. Scott visits the next most often. Don’t believe him about me cheating.

5. I like my 4 west nurses and we do fun things like we planned a birthday party for my over 40 yr old mother.

6. It’s cool to order different smoothies in the hospital so I hope my doctors let me in the ICU. If my mom says I can’t then ask Dr. Havens because he usually says I can.

7. I probably shouldn’t tell you this but my mom makes me read for 20 to 30 minutes every morning before I can play Nintendo. It’s a parent thing! So probably you should remind me if she is in the shower when I wake up.

8. I told Dr. Hoffman the ICU is boring when he made me go there and he was kind of insulted. But there is nothing for kids to do but watch TV. So don’t feel bad if I want to get out of the ICU as soon as possible.

Here are a few medical things about me I would like you to know:

1. Please take really good care of my line (CVL). I bleed a lot with surgery so I really don’t want to lose my line.

2. I really don’t like Vistaril because I can’t breathe. Ask me before giving it to me – I only use it if I’m desperate!

3. Please tell me before you do anything with my J-tube. It hurts when people move the tube not carefully when they take the dressing off. If I feel good I can change my own dressings. Otherwise let my mom do it.

4. Please ask my mom or me if you have questions. My mom knows how to take care of me. She could probably teach medical school. You can ask Dr. Havens too. He has been my doctor for a long time so he knows me good and he is incredibly smart, not just medical stuff. So ask any of the three of us.

5. If you are a female wear gloves before you put my Androgel on or you could grow a mustache. I am serious.

6. You might have to do a pressure dressing if I bleed from my growth hormone shot.


























>

---

Tuesday, April 15, 2008 11:48 PM CDT

I'm sorry I have not had time to get the new montage done. Family company last night, work, helping Abby study (Persian and Han empires...that ought to bring back fond memories to some of you). This horrible insomnia ought to give me time to do a lot but it is starting to really get to me. Abby and I are leaving for MN Thursday on the 4 PM train and will be back on Sunday afternoon - Zach's birthday. How is it possible that this day is here - and he is not? For someone who loves words I am at a loss this week. I can barely comprehend, let alone process, that the two most wonderful boys in the world are not here to celebrate two of the four best days of my life. (Abby and Brittany's birthdays being the other two). I miss them and miss them and miss them.

I'm speaking tomorrow -telling their story. It's hard and only the 2nd time since Zach passed away. I worry and wonder if I should do this - do I really have anything of value to offer anymore? It's irrational but at times I feel like a fraud - not a real mother of children who have chronic illness. I have to remind myself that I am still Zach and Sam's mom even though no one will know me that way someday. I keep reminding myself Zach and Sam's stories are powerful and that this is not about me and what I have to offer. I am simply their voice. I have to trust that their lives will continue to teach others in health care.

Monday, April 14, 2008 5:18 AM CDT
Information regarding Zachary’s upcoming birthday on April 20th and the tapestries for the boys is below this entry. Very busy days here and Abby and I are planning to take the train to Minneapolis on Thursday night to see Brittany – more on that later as I am so proud of Brittany and her accomplishment, which is the impetus for the trip.

*********

THE TIES THAT BIND

There are circumstances that bring people together – common interest, shared profession, community…these are just a few. Most of us have had the experience of meeting friends through our children, and some of us have had the experience of meeting those friends in a hospital because our children share the commonality of having a chronic illness. And sometimes the shared experience is childhood death.

Michael and Colleen are the parents of Tyler and Ryan. Our bond – sadly - is our children’s deaths – Tyler, Zach and Sam. The boys are in the “Save A Life” montage. Both of our families have two boys – boys who are full of laughter and love and have enriched our lives beyond anything we could have imagined. And both sets of boys – Ryan & Tyler, Zach & Sam – were born with a horrific disease.

Dyskeratosis Congenital. That is the name of what Ryan and Tyler have. Last June, when Tyler was two years old, his marrow completely failing, their family traveled to University of MN to give Tyler his one and only chance to save his life – a bone marrow transplant from an unrelated donor. There, Brittany met them at the Ronald McDonald house.

Last September, after fighting valiantly against a post transplant infection and the subsequent organ failure, Tyler passed away in his Mother’s arms with his Father by his side. He was only 2 years old and 5 months. That was 7 months ago. Ryan is four and he is doing okay today. However, he will need a bone marrow transplant at some point. His blood counts are low now but stable. His doctors follow him very closely.

We share a bond that as Michael says, “no one will envy.” And that is true. But even in the darkest sky with the clouds covering all of the stars -there are still stars. And their family has been one of the bright stars in my darkness –often reminding me of the existence of those very stars. While death was initially one of the few things that provided our bond, I truly feel our bond is increasingly our children’s lives. Without a doubt Tyler’s life and his family’s response to the challenges they have faced -and continue to grapple with - has cemented that bond for me.

It’s difficult to describe this bond on paper but I wanted to try to do so - to write about Tyler and his birthday - because today, April 14th , is Tyler’s birthday. He would have been three today. It is an incredibly difficult day. Yet they have planned a truly massive blood and bone marrow drive for Tyler’s birthday. (150 people signed up with walk ins expected)

Along with that Colleen thought of all sorts of activities to be done at this event aside from donation -activities that will benefit other children and families in similar circumstances. These range from collecting donations for the Ronald McDonald House, knitting or crocheting hats for pediatric cancer patients, making fleece knotted blankets and creating memory boxes to give patients at their local Children’s hospital.

After I made the montage “Save A Life” Michael and I talked about making a slightly different version for their event (they do not live in WI so the information would have been unhelpful). Michael was beyond careful not to change anything aside from adding a few more pictures of his boys. At the end he left it in memory of Sam and Zach. But Abby and I felt strongly it should be in memory of Tyler too and we asked them to add that in. They did. When I saw it I felt that what I set out to make in memory of my boys and in honor of their donors was finally complete.

I am reposting the new version. I have removed the CA specific information because as I am reminded daily by the weather - we live in WI. They, on the other hand, are having 90-degree weather. Notice the little boy who also has a laser in the beginning. How perfect for both he and Zach to have their lasers – to me a picture of how they both fought so hard to live. Michael also moved his boys right next to my boys in the montage and that is exactly how it should be. (NOTE: 04-14 morning – please check back tonight as I have not had time to mesh our versions together.)

I will leave you with a quote from Colleen, speaking to a reporter about blood and marrow drive. I believe her words and the things I wrote above may, at least, give one a sense of the family they are. And perhaps inspire all of us.
“It’s finally a way for us to give back, to make a difference for someone else.”









ZACH’S BIRTHDAY

Some people have asked me what I want to do for Zach’s birthday and I just don’t know. I want to start an annual event between Zach and Sam’s birthdays (so between 04/20 and 05/09) but of course that will not happen this year. It will have to be late or not until next year. I have some ideas but need to get them on paper before I share them. For most of their lives, I was able to care for Zach and Sam only because I had help from a great team of people representative of health care, school, community, friends and family. This will be no different. It will take a lot of people to implement my plan and I hope that some of you will help me.

For this year - Zach’s 16th birthday on April 20th - below are some of the things that I would love. No doubt there is no end to the ways we can celebrate “The One and Only” but off the top of my very tired and once again hurting head I have four things:

1. To hear or read about a favorite memory you have of Zach

2. To hear that you donated blood or a blood component in memory of Zach. (Understanding that some cannot donate...but perhaps can recruit a friend or spread the word about donation?)

3. A piece of material for Zach’s Tapestry ( *** see below)

4. For those who want to donate money I support all of the below because they do wonderful things and/or because they have supported our family:
a) Blood Research Institute (bcw.edu - click on research to learn more and charitable giving to donate)
b) Make A Wish of WI (http://www.wisconsin.wish.org)
c) United Mitochondrial Disease Foundation (umdf.org)
d) Target gift cards, which I will give to the 4 west and/or Infusion Clinic child life specialists at Children's Hospital of Wisconsin (no money please if for this purpose)
e) For anyone who wants to donate money (not gift cards) to Children's Hospital of WI, please consider noting "Project TEAM in memory of ___" on your check. This is the fund we designated donations to after Zach passed away.

For more information about any of the above please email me.

***********************

*** Update on “Sam’s Tapestry” and “Zach’s Tapestry” ***

Thank you so much to everyone who has sent or brought over material for Sam’s tapestry and also for those who have sent some for Zach. We are getting them in slowly but surely and have a nice pile of contributions for each boy. I am set on this being my Thanksgiving project as unfortunately the 2008 holiday falls on the one-year mark of Zach’s death. Thanksgiving would be hard enough without my 2 boys but this makes it especially hard. My family celebrates Thanksgiving at our house so I hope they are ready to bake pumpkin bread and help me with my weaving, because Lord knows I will need help! But love can make us all come out of our comfort zone. Zach and Sam’s physical therapist, also not the crafty type, made Sammy a telle-tubby pillow for one of his birthdays. He loved that pillow and it even stood up through constant washing and drying.

Specifics regarding donations for the tapestries

*** I will make one for each boy

*** Request 3-foot long by 1.5-inch wide piece of “cloth.”

*** The cloth can be any material: from neckties, shirts, dresses, scarves, baby blankets or sheets. It can be something that represents you or something that reminds you of Sam/Zach. It can have buttons or a zipper, be fringed, old or stained.

*** On the cloth, using a permanent maker, write whatever you want. Perhaps note a favorite Zach/Sam memory, a movie, book or cartoon character that says “Sam” or “Zach” to you, or something you liked to do together. Inscribe a line from a poem, a prayer, a message to Sam/Zach or a message of hope. Perhaps tell of something you have done because of Sam/Zach or write of how he changed or impacted you. If a child is participating who cannot write then a picture or a scribble will be equally treasured. The length can be a single word or as long as fits on the material. The only thing I would like all pieces to have is your name…but if you truly want to be anonymous that would be ok too.

Whatever I have on Thanksgiving, I will start to weave.

Although I am reminding you about this in honor of Zach’s 16th birthday (APRIL 20th), please know you can send one for Zach (and/or Sam) anytime that works for you.

If anyone is in contact with Zach or Sam’s friends please feel free to pass this on to them or their parents.

For those who need to mail it to me this is the address:
2910 Cone View Lane
Waukesha WI 53188

---

Tuesday, April 8, 2008 10:28 PM CDT

April Fools Day - was such a hard day. I think one joke at work was the extent of the humor. (I have to admit it was good Mary Jean!) It was also the day I found out about Alex passing away. I could barely get through work and cried the whole way home, which has not happened in weeks.

When I got home there was a card from one of Zach’s nurses – Amanda. I refer to Amanda as Mama Bear because she was Zach’s fierce protector in the ICU on night shift. If you know her you’re laughing because Amanda could probably be blown away by a strong wind…. but man do not mess with her when it comes to Zach. If I ever have to fight Goliath I’m taking her.

Amanda loves April Fools Day, like Zach, and they were kindred spirits when it came to plotting out all their fun. Her card made me cry even more -but I laughed too because she had included several rubber spiders for me to use on Abby.

And then that made me think about how she and the other nurses found one of Zach’s fake spiders and put it on him for the doctors to find on Halloween -which made me laugh

I thought about how Zach and Sam put a larger rubber spider in the microwave. I believe it had ripped; Zach tried to glue it together and then had the bright idea to nuke it so the glue would dry faster. I heard all sorts of sounds and flew into the kitchen in time to see it on fire in the microwave. Were the boys worried? Oh no! They were hysterically laughing while the spider blew up all over the microwave. Remembering that made me laugh too.

After dinner I read the emails and guest book entries and facebook wall posts from people remembering Zach on April Fools Day…which made me smile.

So the day ended much better than it began. Thank you!

It is now 12 days until Zachary’s birthday. I was thinking last night about how his doctor and I dreaded having the driving license conversation with him. Zach was quite sure he should get his permit on Oct. 20th and his license on his 16th birthday. So much so that even in the ICU, when the day turned to Oct 20th, I did not tell him. I was afraid he would be agitated because in his mind he would want to page Peter right then and there to discuss driving and his body, of course, would not have cooperated.

So yes…it was a conversation we did not want to ever have. Yet now, what wouldn’t I give to have that very difficult conversation? What wouldn’t I give for my son to be on the brink of 16? In the end we would not have shrunk from the conversation and though I know Zach would have been deeply disappointed, I also know him well enough to know that he would have found a way to be okay with that reality. That was always Zach -great hope but always acceptance when necessary.

Some people have asked me what I want to do for Zach’s birthday and I just don’t know. I want to start an annual event between Zach and Sam’s birthdays (so between 04/20 and 05/09) but of course that will not happen this year. It will have to be late or not until next year. I have some ideas but need to get them on paper before I share them. For most of their lives, I was able to care for Zach and Sam only because I had help from a great team of people representative of health care, school, community, friends and family. This will be no different. It will take a lot of people to implement my plan and I hope that some of you will help me.

---

Friday, April 4, 2008 10:29 PM CDT

Remembering the friendship of Alex and Abby…

When Abby was little she was not as healthy as she is now. Her muscles were weak; she had a lot of difficulty growing and frequent episodes of high fever - always followed by an ulcerated esophagus. Consequently she needed physical, occupational and speech therapy and exceptional education services 3 to 4 days week. This was between the ages of five months and 3-years. It is almost impossible to imagine this for anyone who did not know her when she was so young.

At that time mitochondrial disease was an unknown to us. She, like Zach, was evaluated at NYU Medical Center when the diagnosis was first mentioned. She was 15 months old and close to needing a feeding tube placed. Many know how the story goes from here: the testing was halted too soon and thus the results were ambiguous; the diagnosis was thrown out – leading us to false diagnostic and therapeutic paths for many years. The hypothesis that Zach and Abby had an unknown genetic disease was discarded when Abby spontaneously began to improve at the age of 30 months. That led to the mistaken idea that Zach had a benign, enigmatic –non-genetic - disease.

It was wonderful, however, to see Abby inexplicably improve virtually every day. By the time she was three years old and ready to transition to early childhood (EC is for preschoolers with special needs) she did not qualify. I enrolled her in a community preschool but she would not interact with the other kids, was tired and even seemed unable to do the physical things she had just learned to do. The teachers expressed concern so I took her to three-year old screening to see if, perhaps, she really did need EC after all. Due to some problems noted, the recommendation was to attend 3-yr old EC for a week of evaluation with teachers and therapists who had worked with Zach the year before. I would not have been shocked if she had qualified for EC but apparently she was a little chatterbox, social-butterfly and did just fine for the entire week.

The EC team asked me if she could be the “peer model” for the class. A few typically developing kids were integrated into the EC class as the “peer models” each year. This seemed like a good idea to me for Abby clearly was not thriving at the community school, where they warned me that I was setting Abby up to be even more delayed than she already was. They strongly cautioned me not to put her in “special-ed” given she did not need it. Many well intentioned friends told me it would not serve Abby well to spend her days with kids that could not talk well - if at all - could not walk - had autism, etc.

I knew the staff well at Banting through Zach. I knew that Abby would never have better teachers and adults in her young preschool days than that staff so I did not worry about her becoming more delayed. However, what I did not know or forsee was that the children she attended EC with would also be her teachers -and they too would be invaluable.

Alex was one of Abby’s friends. Every day Abby gave me an Alex report. She was drawn to him from the day she met him. Most days she told me he was happy and relayed the things she did with Alex and their teachers. Some days she was sad because Alex had not been himself or worse -he was absent. I don’t remember her ever telling me that Alex could not walk or talk or anything that he could not do. She only told me what made him smile and she loved when he was happy. I’m honestly not sure she thought it was unusual that he could not walk or talk – it certainly never mattered to her.

When Abby went to kindergarten she was above age level in all skills. She was social and she remains so. Obviously, spending her days with children who had unique needs did not harm her. Abby is also compassionate, kind, unselfish, patient, hopeful and inclusive. Abby was born all of those things…but her experiences with her first friends - Alex, Travis, Leah, Robbie and her brothers reinforced those traits. We live in a day and age of worry about how preschool education and experience might impact college admission and of valuing ABC memorization more than attending speech therapy with your buddy Travis or holding your friend Alex’s hand while the teacher reads a book. I find that sad and wonder what harm we are doing to children. Abby’s friends, in “special education” taught her lessons that will stay with her all of her life. Perhaps she was enrolled as a “peer model” but the reality is that her friends were also her “peer models.”

We largely lost touch with Alex once in kindergarten because they went to different schools. That was 9 years ago and still Abby remembers Alex and EC and some of her other friends. On Tuesday I found that Alex had passed away, unexpectedly, on Sunday night. He was Zach’s age – just having turned 15 in January. Abby will be 15 in May. He, like Zach and Abby, was at West High School.

I do not know Alex’s family but I felt a strong need to go to his funeral on Thursday. The pastor gave a beautiful sermon and was very clear that Alex’s care was never a burden to his family. He talked about Alex’s smile…even though I have not seen Alex since he was little he must have kept that shining smile. He talked about all of the wonderful things Alex’s family did with him and how many people Alex taught in his 15 years. Yes he did. I can attest to the fact that he taught my daughter when they were only three years old. I cried because all I could think of was how hard this is and will always be for his Mom and Dad and everyone who loves Alex. It physically hurts to think about their pain and to think how quickly all of their lives changed.

“She was struck down by a tragedy that hangs by the slender thread of reason over the lives of all, a thread which may snap at any time in any home with consequences as disastrous…”

--- Frank Lloyd Wright, Taliesin, August 20, 1914
A letter “To My Neighbors”, published in the Weekly Home News after the death of his beloved, Mamah Borthwick.


Life can change in an instant. An instant. It did for when Sam died and for Alex's family on Sunday and if not an instant – it changed quickly enough when Zach passed away on 11/27. My baby cousin, Lilly, went to bed healthy last Thanksgiving week and was not alive when her Mama went to wake her in the morning. My friend Sarah’s husband has been gone a year…. two little boys and his beautiful wife woke up and he was gone. Even though they knew he was sick, their lives changed in that instant. A plane goes down, a building blows up, the doctor gives a diagnosis, a child drowns…and in an instant life changes.

May we all give a true account of a live well lived like Sam and Zach
May we all teach others like Alex
May we all dance through our days like Lilly
May we all love the way Steve loves Sarah and their boys

---

Sunday, March 30, 2008 10:08 PM CDT

We’re alive and relatively well. Abby and Brittany have both been sick but they are feeling better now. We have been in New York City with various and sundry family members and had a wonderful time except for Abby’s fore mentioned illness. Thankfully the stars were all aligned and she was well the night we had tickets to Grease to see MAX. Those of you who have read this site since at least January 2007 know all about MAX and Laura – and our infatuation with MAX and Laura - who won the Grease reality show and thus were awarded the parts of Danny and Sandy on Broadway.

Brittany did not make it to NYC. The problem was snow – an unbelievable amount of snow that fell the day we were supposed to leave (last Friday). The airport shut down. We were supposed to leave Friday am, waited all day in the airport because the (Unnamed) airline insisted we would leave any time now, and when the airport shut down about 7:30 PM the airline said they could not get us to NYC for 3 more days. This is despite the fact they had seats open -don’t ask because I definitely cannot explain their idea of “service recovery.” Unfortunately, I think they decided selling tickets at 4 times the price we paid was better than giving people who missed their flight the seats. Brittany had only planned to be there from Fri until Monday night due to school so that eliminated the trip for her. She is my child who most wanted to go there - for years and years. Her absence was incredibly disappointing for her – and for all of us.

As for our flight, on Easter Sunday I finally got someone with compassion and honesty after I cannot tell you how many attempts to fix the situation. The woman agreed to let us fly out Easter night - we got there at midnight. However, she apparently did not have it in her to let us extend the trip past Friday am because “we cannot control that it snowed.” Well, I know that but they certainly can control what they do in response to the snow.

Once we were there I called someone else Monday and they “miraculously” found tickets for us to come home Saturday. Unfortunately we missed Jersey Boys (a Broadway show) and the company that I bought the tickets from had the same mantra as the airline: “we cannot control the snow.” These people don’t seem to get it that no one is blaming the snow on them but customer service would be nice. I let it go. It was/is a lot of money but it was not worth arguing into perpetuity with these people while on vacation.

This was a trip planned for last March – one that Zach had grown to look more and more forward to. However, he became too unstable to travel and the difficult decision was made to cancel everything a few days before we were to go. Ultimately the decision was right as he became gravely ill, culminating on St. Patrick’s Day. His doctor was overseas and though he was due to come him at the end of that week I remember thinking that he was likely not going to make it back home before Zach died. I certainly did not think Zach would make it through the spring. Yet, as everyone knows – he surprised us all, improved and became stronger than he had been in a year and thrived until he entered the hospital on Sept 20th.

I debated about taking the trip to NY this spring. The girls certainly deserved the chance to go. Still…every time I thought about going so many memories crowded the plans:

Grand plans for a trip to NYC – most exciting to Zach were the tickets to the Lion King, plan to see Nintendo World, ride the subway and stand at the top of the Empire State Bldg. I could not wait to show my children the many things that I did not appreciate as a kid and young adult, living so close to the city.

A St. Patrick’s Day filled with sorrow and fear

An anguished vigil that I kept by Zach night after night, that horrible week in March

The humor of his recovery the very day his doctor returned home

The absolute miracle that came with springtime - the gift of Zachary walking independently, creating art and stories, learning in school, telling and planning jokes, the unbelievable sight of him walking up and down stairs…there is no describing what the felt like to realize that the things I was watching were real – not dreams.

Even the good memories hurt because Zach is not here and he so wanted to go. I’m very glad we went although I admit there was a bittersweet quality to it. It was hard not to think how very much Sammy would have liked the subway and how Zach would have delighted in the Museum of Modern Art. How they both would have loved that their Uncle David slept over at our rented condo every night – and Grandma and Grandpa too.
Zach would have loved the lions at the library entrance and they both would have started at the ceiling in Grand Central Station. Sam even had a NY accent – not sure how that happened! Even seeing the World Trade Ctr site filled me with memories of Sept 11th -where the boys and I were (the hospital of course), how we watched that 2nd plane hit the tower and how they complained that their T.V. shows were interrupted (they just did not understand).

Having said all of that, I am so glad we went. Although I miss my boys tremendously and the memories ache, knowing how much they cherished and embraced vacations, fun and spending time with family makes me realize that I have to continue to do the same. It’s a gift. They knew that more than anyone.

Hopefully I will eventually get some pictures up…. after I post the ones from the trip to San Diego and the ones of the blood drive…. I’m a little behind.

Tuesday is April Fools Day – one of Zach’s very favorite days. Please play a joke on someone or find the joy in a joke played on you. I’ll have to share some of his April Fools day antics another time. I miss his planning and scheming.

~Anne

P.S. David’s 2nd CD is on iTunes. He is doing great in NYC and we’re so proud of him! (Dave is my little brother)
http://phobos.apple.com/WebObjects/MZStore.woa/wa/viewAlbum?id=264692223&s=143441

---

Friday, March 21, 2008 2:07 AM CDT

It’s been beautiful weather here, which makes an enormous difference. For those who celebrate Easter have a wonderful holiday. I realize that God did not give us Easter for the candy but I do take it as an excuse to feel I can eat a pack of Peeps every day for a week.

I am terribly delinquent with my thank you letters to all those who generously gave us donations, gifts, meals, flowers, etc. after Zach passed away. Some of you have asked if we received gifts or donations and we have. The donations have all been given, the cards read and re-read, the flowers and dinners enjoyed…I could go on and on. I do want to note I have not killed a single plant yet which is nothing short of miraculous. I don’t know exactly why it is taking me so long to write the notes…I was done by this time with Sam. This is typically where someone says “you don’t have to write notes” or “I’ll help you” and I appreciate those words so much. The thing is I know I don’t have to but I actually want to. I don’t feel it is a burden in any way.

Brittany has been on spring break all week but we will see her this weekend and I am looking forward to that. She had a great spring break doing the Pay it Forward Tour which is something I think I would have loved at her age. We’re very alike in that way. As much as she enjoys Minneapolis I think it was so nice for her to get away from all her obligations and just be 21 years old, spending time with college friends and doing some pretty amazing things for the communities she visited. This is a link to the tour if you’re interested in finding out exactly what the Pay it Forward Tour is and what they do.
http://www.stlfumn.org/tour.html
Pretty neat that college kids are the ones who came up with the idea.

Last Friday I had the opportunity to meet the CEO of the Blood Center of Wisconsin (BCW). It was really reaffirming to me. Of course, I have always been impressed with BCW but I did not understand how much research they are involved in, how unique they are and all the services that they provide to our community. They are an outstanding organization and an asset not only to our community but the entire country as they provide testing and some products that few if any can provide. The hematologists who are affiliated with BCW are pretty wonderful too.

They are just one more piece of evidence that despite the severity of bone marrow failure, bleeding problems and destruction of red blood cells -the things my boys suffered from - I could have traveled the world looking for better care and in the end would have found myself right back here in Milwaukee with the hematologists and blood center that we started with. There is not better care to be found and certainly not hematologists who would have cared any more for the boys than the group we already have.

It’s hard to describe why this matters so much to me now but I can try. My friend E, likes my latest coined term which is “post mortem Mommy hell” -that is what I call all the second-guessing and wondering if more could have been done in the middle of the night. I think it is unavoidable to a certain extent – at least for me. So when I find something to “prove” my middle of the night questioning irrelevant it is comforting. Learning so much more than I ever knew about our blood center was one of those things...an irrefutable fact to throw at my worry that maybe we missed something and if we had known it we could have stopped him from bleeding. The fact is that we had the best people involved -if it could have been known in 2007 we knew it. The rest was unknowable even to the best of the best.

Oddly, the post mortem report ended up being one of those comforting things, in that it made clear that there was absolutely nothing more that could be done. Zach’s soul thrives but his body was beyond the point where he could have lived longer even if we had successfully revived him on 11/27. His body looked as if it had been beyond the point of survival for a very long time. We think it was nothing short of a miracle that he was talking, walking, laughing, learning and enjoying life. So the autopsy report -while difficult to absorb and very very painful - provides a degree of comfort as well. It’s hard to argue against the facts in the report.

So with that, my random thoughts are done for the night. I probably won’t have time on the computer for at least a week but know that we are fine. There is a lot going on this week and I will fill everyone in next time I update. Have a nice first day of Spring….we’re getting a snowstorm to celebrate here! So much for the spring weather we had all week.

~Anne

---

Sunday, March 16, 2008 11:05 PM CDT

March 17 Note:
No, No, No - the green & gold is NOT also for the Packers. Very funny everyone but you may remember that I am one of the few in Wisconsin who can get out of bed and greet the day with a smile when they lose. Eagles #1! Giants #2! Steelers #3! Patriots #4! anyone playing the Packers not listed above is #5!

Sunday 3/16 at 11:05 PM
This will be short as my right arm is being a problem again.

You might notice there is a new border. That, of course, is for SAMUEL PATRICK’s DAY. Only my Sam would be so sure that St. Patrick’s Day was marked as a holiday solely for the purpose of celebrating himself. We never did correct him. How could you when someone is that excited to have a national holiday in one’s own honor?

The background has golden coins in honor of the personal finance guru – the one and only Zachary Ryan Juhlmann. Who knew personal finance could be so fascinating? Zach loved saving his money, planning what to do with his money and learning about money. How appropriate, then that, for the few weeks he was in high school, he got to take a personal finance class with a wonderful teacher and class. They sent cards to him in the ICU and he blinked and blinked his eyes whenever we told him that.

My friend Theresa sent me this poem a few weeks ago. It was one of many poems that said what I cannot always find the words to say.


Seek Not My Heart
by Kit McCallum

Oh gentle winds 'neath moonlit skies,
Do not you hear my heartfelt cries?

Below the branches, here about,
Do not you sense my fear and doubt?
Side glistening rivers, sparkling streams,
Do not you hear my woeful screams?

Upon the meadows, touched with dew,
Do not you see my heart's askew?
Beneath the thousand twinkling stars,
Do not you feel my jagged scars?

Seek not my mournful heart kind breeze,
For you'll not find it 'mongst these trees.

It's scattered 'cross the moonlit skies,
Accompanied by heartfelt sighs.
It's drifting o're the gentle rain,
A symbol of my silent pain.

It's buried 'neath the meadow fair,
Conjoined with all the sorrow there.
It's lost among the stars this night,
Too far to ease my quiet fright.

No gentle winds, seek not my heart,
For simply...it has torn apart.

---

Wednesday, March 12, 2008 11:07 PM CDT

Such good news today...During Brittany’s 1st year in Minneapolis she met a family that she became pretty close to. Their little boy, Joseph, who is in the blood donor montage, had a rare type of cancer that brought them from the east coast to MN. Joseph is the red headed super hero. I’m probably not supposed to say this, given super heroes don't want to be cute – but he’s ever so cute! They have 2 beautiful girls and are just a wonderful family. At the end of the montage, when Brit is holding the sign in her spider man shirt at the Relay for Life, her sign says “In honor of Joseph."

Joseph had 2 bone marrow transplants and after a really long, hard road, their family was finally able to move back to their home on the east coast. We were so happy for them although sad to see them go. They are just a magnificent family. When Brit was taken to the ER for her heart little Joseph prayed for her and then when he woke up in the middle of the night all he wanted to know was if Brittany was better. When they were in Minneapolis I always felt so comforted by their presence.

Their family has prayed faithfully for ours, always took an interest in Zach, Abby…all of us. Sometimes I have to remind myself we have not actually met in person because it feels as if we have.

THEY ARE MOVING TO MINNEAPOLIS!!!!! I know my daughter is an adult. I know she is so smart, capable, beautiful, funny and so much more…still, everyone needs to have a home – a safe place where they can retreat. Brittany has a family and a home, of course, but we live 5 hours away. This is a great gift to me to know that this special family is going to be close by. It sounds silly but when I think of them I think of bright rays of sun - really. I think it is because I think of the kids' beautiful smiles.

Tuesday, March 11, 2008 11:29 PM CDT
I’m feeling better. My arm is not hurting - just a little weaker than it was. Head and neck still a problem but better. We'll see.

Anyway…on to much more important things:

I got an email today from someone who knew the boys saying that they had never donated blood before but because of the montage they did on Friday at Zach’s memorial drive. I have had several emails like that in the last few days. Others have written about how they used to donate but have not in a long time – now they will be doing it again. It is such a gift every time that I hear something like that. I am sure that sounds cliché but I feel that so sincerely and genuinely.

While it is true that I spent the time making the picture montage about blood donation, the stories and pictures of the children and adults are what reach out and grabs hold of a person’s heart. One always hears about the power of a story. I think the response to the montage gives testament to that power. Thank you to everyone who allowed me to use your pictures and experiences.

I got a different email from a close friend last night about her toddler daughter who has taken a liking to a strip of fabric leftover from the hospital gown that this friend made Zach in the fall. Her daughter prefers it to her baby blanket. I should mention that it is a camouflage design and given Anna is really so very girly girl it all just makes me smile!

The nurses say they just miss Zach and Sam. We should have been admitted by now. I miss them too but feel glad they tell me these things. We spent 25 percent of our lives on the 4th floor. The new hospital lobby will be done at the end of the summer. There are – or at least were - plans for a smoothie bar. I wonder how big of a donation it would take to name it “Zach’s Smoothie Bar.” He recommended it on every survey we filled out. I’m sure we can’t get the naming rights but I think that those of us who heard Zach call 3663 and order yet another “interesting” smoothie will think of him whenever we see it.

Every story I hear about my boys - whether a memory or something that reminds you of them or how they have impacted you - every story reaches out to MY heart. Little can remove the pain I feel. Still…the stories give me hope that my children will endure in the hearts, minds and actions of others -some whom we may never know.

Zach, Sam and I were joined at the hip for their entire lives so their stories are etched in my heart and soul. But sometimes in the middle of the night I wonder…was it real? Did it really happen? Were we really so happy? The answer. Of course, is inevitably yes but it helps to have others come forth as witnesses to their lives – even if you only knew them from a distance. I love hearing stories about them and I love hearing that you remember them. Thank you for continuing to do that for me.

I worry I will forget something. Sometimes I look at Sam’s bed and it hurts that I don’t remember the names of all 150 dogs anymore. I remember many – but not all. I think how disgusted he would be with me for forgetting. Zach, on the other hand, would patiently tell me once again. They were so different yet such perfect compliments to one another.

A mom, who has a child with a terminal condition, asked this question last week: “What will I do when my son dies?” There’s no way to really answer that question. Mostly I just wanted to tell her that as hard as it may be, she must try to find hope - even if it is hope for a good day or hope for a moment to rock him. Time will march along soon enough and when her son is gone, whether a year, a day or ten years from now, it will never be an amount of time that feels enough.

I constantly wish for just one more hour to lie in bed with Sammy, reading to him, one more hour to help Zach with homework or play a game. How I would love to go to infusion clinic 6 hours a day every day with Sam like we did the year before I started giving blood products at home or to rush off to therapy in the morning – me always late – Zach always patient. And in the absence of that - I would give my entire future for one minute – just one minute - with my sons. Of course, I recognize that even if I had that minute I would covet just one more.

I always knew I was right where I wanted to be. People used to say they wished I could have time for myself –a manicure, a little vacation, a night out. I knew that when the day came with time to do those things it would be a day without my boys. When that is the case, those things don’t seem quite so necessary and privileged.

I had my first pedicure a few weeks ago – my feet look ok (I’ve walked on the beach too much for anything but ok) and my toenails are quite pretty. I went to Florida and had a wonderful time with my Mom, Abby and Frank. I go out with my neighborhood lady friends - we laugh and have a great time. Tomorrow we’re starting our social club – I mean our book club. Yet, as much as I love my Mom, Frank, my family and friends, I think they will understand that I’d trade my “freedom” to have the boys back home with me where they belong.

In the end, I told the mom who wanted to know how to live without her son, that even though I often feel “I” am dead - someone else inhabits my body - it would be inconceivable for me to not survive. Zach and Sam fought so hard to live and survive that to not at least try to do the same would be a dishonor to them.

That's not to say that I don't have moments and days when I just don't think I can live one more minute without my boys...but in the end I always come to the conclusion that I have to try my best to pay tribute to the lives they led, to carry out all the meaningful things I think they would have done had they lived a full life. They were precious, exceptional individuals and each would have done extraordinary things that changed the lives of others

Honoring their lives brings me back to where I started tonight – back to the many people who help me carry out all of those extraordinary, meaningful things. Thank you so much. Zach and Sam knew they were loved but I'm not sure they knew the extent of their fan club.

~anne

---

Sunday, March 9, 2008 10:15 PM CDT

As Abby wrote, last week I had a migraine. It started early Wednesday but I made the mistake of ignoring it and taking a lot of medication to get through work and school conferences. I woke up in the middle of the night with pain in my head beyond anything I have ever experienced in my life. No amount of medication could take it away. On Thursday, it continued to get worse and spread down the right side of my neck and arm. I could still move my right arm but it was so heavy and weak.

It takes a lot for me to go to a doctor but the pain was horrific and I was scared. It was all too reminiscent of Sam’s status migraines that progressed to “stroke like episodes.” Some of the fall out from his early migraines never went away.

When I got to the doctor they found I had very high blood pressure and more concerning I was cognitively just “off.” Zach used to complain, “My head feels sick” and could not describe beyond that. I think I now know what he felt. It is completely disconcerting. I was a little scared it would progress into the “coma like” state the boys often went into.

The doctor prescribed a few medications as he felt the migraine had set off nerve inflammation. He added pain medications and told me not to do anything. In essence this is all a doctor can do…it is what we did with Zach and Sam. Reduce any demand on the body so that the mitochondrial crisis does not get worse. I now understand the pain Sam went through and feel even more thankful for his doctor. He did not let him suffer through that pain – he treated the pain. I am thankful my doctor felt the same.

My head feels better but still hurts more than it should for this amount of medication. The same can be said for my arm and neck. My arm is weak but much stronger than Thurs – Sat. However, just typing this hurts and I wonder how in the world I am going to do anything with this arm. Very frustrating. The meds help but I hate how they make me feel. I need to try to go to work tomorrow but to do that I will have to try it without some of the medication. I am going to try but I also know enough now to not push myself through it like last week.

Sleeping in the boys’ room last night I thought about setting the clock ahead for daylight savings time. Then I realized that it already was set ahead. That confused me as he is so precise – why would his clock be an hour ahead? Then came the realization that while it has been three months since Zach left me, it has been longer since he has been home. When he left our house on Sept. 20th it was still daylight savings time. This, of course, just hurt deeply. I did not know on Sept. 20th that Zach would never leave nor enter our house again. Did he? What did he do the last time that he was in his room?

We actually have the official numbers already for the blood drive.
160 pints!!!!!!!!!!!
What a wonderful way to remember Zach’s life
I won’t reiterate all that Abby wrote on my behalf (see old journal) but I do want to say once again – Thank You – to all who had a part in making 160 pints a reality!

Thank you for all who remembered Sam last week. It meant a lot to me. It surprises me how much I still miss that little boy. Three years may as well be three months…I miss them both so tremendously.



Please feel free to pass on to anyone who you think would like to know more about blood donation

If clicking on the image or link does not work, copy and paste this link into your browser's address field: http://www.onetruemedia.com/shared?p=4bd1e4a5b2a2afa5cfba52&skin_id=1704&utm_source

___________________________________

Make photo slide shows at www.OneTrueMedia.com

---

Friday March 7, 2008 3:21 pm

This is Abby. I'm typing for my Mom because she has had a migraine since Wednesday with right side weakness and pain. She isn't able to type well because she's right handed. She did go to the doctor and will hopefully be better soon.

My mom wants to tell everyone thank you for donating blood today, supporting the blood drive, and helping out today. She's sorry that she couldn't be there. For those who couldn't be there, the turn out was AWESOME!! I was able to check things out for a couple of hours and meet the great people from the blood center. Pictures were taken and we will try to post them soon.

We want to thank the Waukesha West Student council, Mr. Anderson, and Mrs. Hunter for organizing this blood drive in memory of Zach. Mrs. Hunter had balloons, including a star wars balloon that Zach would have loved. You guys are wonderful and your efforts mean so much to us and all of the people that will benefit from the donated blood.

We would also like to thank Mr. Kuhl and the Blood Center of Wisconsin for everything they did to make the blood drive a success. What you do everyday is amazing!! My mom also wants to thank you for the beautiful flower. She hopes to get the chance to meet those of you that were there from the Blood Center and thank you in person.

Mrs. Hunter says that we will have the official number of pints donated on Monday. There were 198 people signed up, but some may not have been able to donate for health reasons.

Thank you so, so much - all of you!!


Monday March 3, 2008 after midnight
To all who surrounded, cared for and supported Sam in life and for all who, even now, carry him within your heart

Today it is three years since Sam passed away. The day marks a single event - Sam's death. It can neither overshadow the almost eight years of moments that made up his life, nor the impact that his life has made on me.

This montage is for Sam - not as a remembrance of his death on March 3, 2005, but rather as a reminder that he LIVED until March 3, 2005 and of one of the many important things he taught me.

This montage is also for the people I never met who helped Sam live and shine so radiantly...it is for those who gave him the very life that flowed through his arteries and veins - his blood, plasma and platelet donors.

Before Sam I never really gave thought to blood donation - despite knowing, as a nurse, that blood products often saved lives. I never thought about the people who volunteered their blood and time to "strangers." I took the blood supply for granted.

Then Sam became dependent on blood products and I finally understood what I had only known before: blood donors save lives. It's an extraordinary gift that they give.

Sam and his donors taught me about the importance of community. They taught me that strength does not just come from within, but from others who choose to share their strength when we need it the most.

If I could have saved Sam's life, if I could have breathed my own into his, I would have. But I just did not have the ability to stop his death and that is the hardest thing I have ever had to face about being human.

Still...Sam taught me that there are always rainbows. If giving witness to his vibrant life, a life would have been impossible without volunteer blood product donors, prompts just one person to donate one pint of blood then I have found one of Sam's rainbows. If just one more person donates blood then I will feel that I have saved, perhaps, the essence of Sam and all that he taught me.

Sam's life taught me that our purpose on Earth is to love, to do our best to learn and find joy in each day, to depend on and help one another and finally to leave behind a legacy of all that we learned, loved and bore witness to.

_______________________
_________________________________
For info on Zachary's Memorial Blood Dive (03/07/08)...please see below


Friday, February 29, 2008 0:20 AM CST

The background is orange - Sam's color. Funny, how his personality so matched his favorite color: vibrant, loud, alive, sure to bring smiles.

I love you 500 and 900 Sam and I promise I will find you.



To read about and help with “Sam’s love tapestry” please scroll down below the blood drive reminder


BLOOD DRIVE REMINDER
Remember to call if you are planning to donate blood for Zach’s memorial blood drive next Friday, March 7th. You must have an appointment and the sooner you call the better so the school can get everything organized. Thank you to those who have already made an appointment. We really need your help so please consider taking the time to donate next Friday. The best news possible would be that we have filled all 190 spots.

March 7, 2008
8am to 1 PM
Waukesha West High School – back part of gym in the field house
Must call for an appointment
RSVP: Cindy's Hunter 262-970-3915

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Monday it will be three years since little Sam passed away. I have hated these days. I know some celebrate the day as the day their child went to heaven. I respect that - even envy it. But for me it will never be a day of celebration. I cannot imagine ever feeling thankful that Sam is not here. Perhaps if he had suffered I would feel differently but suffering is subjective – and for Sam (and Zach), there was very little suffering. Despite the many medical problems, complex care requirements and technology and medication dependence that another person may have experienced and interpreted as pain and anguish, Sam simply never perceived his life as tormented.

So the day is not one I look forward to and I am still at a loss when it comes to how to spend my time on March 3. Because of what the day marks I do not want to go to work or do anything that remotely feels normal and status quo. And yet I don’t want to make a cake and shop for gifts for the school like I do for his birthday - which truly is a day to celebrate. I would like to lie in bed all day and yet I don’t want to do that either…for the day demands something to mark it as the day my precious child’s laughter ceased. It is a day I wish would never come and yet I so want to find a way to make it pass.

Yesterday I was in a friend’s office. She works with bereaved families but we were friends long before I was considered part of a bereaved family. I saw something in her office that immediately caught my eye and touched my heart. I want one for each of my boys but I cannot do it without help.

What did I see? I saw a small woven tapestry that staff made at the last staff memorial service at Children’s. It is beautiful. The idea came from a photograph called “Woven Memories” by April Scott. I immediately latched on to that weaving and thought maybe I (actually WE) could do something similar for Sam. Perhaps I could even start it on March 3rd, although this is a little last minute.

Sometimes people weave pieces of the person’s clothing. I don’t want to do it that way because that would simply involve me. I would love the pieces woven together to be from anyone who knows Sam - whether that was one moment or throughout his entire life or only since he went away. It matters not if you only knew him by stories or if you were his family or best friend. Child, grandparent and everyone in between…. I would love anyone who has been touched by my little boy to help.

So for those who want to be woven into a tapestry that represents the love that surrounds Sam - and has always and will always - this is what I need:

***A 3-foot long by 1.5-inch wide piece of “cloth.”

*** The cloth can be any material: from neckties, shirts, dresses, scarves, baby blankets or sheets. It can be something that represents you or something that reminds you of Sam. It can have buttons or a zipper, be fringed, old or stained.

*** On the cloth, using a permanent maker, write whatever you want. Perhaps note a favorite Sam memory, a movie, book or cartoon character that says “Sam” to you, or something you liked to do together. Inscribe a line from a poem, a prayer, a message to Sam or a message of hope. Perhaps tell of something you have done because of Sam or write of how he changed or impacted you. If a child is participating who cannot write then a picture or a scribble will be equally treasured. The length can be a single word or as long as fits on the material. The only thing I would like all pieces to have is your name…but if you truly want to be anonymous that would be ok too.

Whatever I have on Monday, March 3rd, I will start to weave. Now I know many of you are saying “Anne? Weave?” True, it is not my thing. But for Sam I can learn. Eileen and Ann, Zach’s art therapist, will tell me what to do. Besides, do you know that once I made a basket when Zach was inpatient? True story, although admittedly, the nurses took a picture of it on my head because the nurses thought it ended up looking like a bad hat. Ann thought perhaps I needed a simpler project in the future. Well, I think this should be less challenging and I am far more inspired!

If you do not get it to me by Monday please make it anyway and get it to me when it works for you. There is always “Samuel Patrick’s Day” (Sam referred to St. Patrick’s Day as Samuel Patrick’s Day, which he of course thought was HIS day). And after that his birthday, Mother’s day, my birthday…there are no end to those days that come when my hands feel especially useless and unneeded.

If anyone is in contact with Sam’s friends please feel free to pass this on to their parents. I had hoped to get to Bethesda and help this year but then Zach went into the hospital …and here it is February and I have not seen his little friends all year.

For those who need to mail it to me this is the address:
2910 Cone View Lane
Waukesha WI 53188

If you would like to make one for Zach, please do. I will save them and perhaps start on his birthday or Thanksgiving, since unfortunately Thanksgiving 2008 ends up being 11/27 – the one-year mark of losing Zach.

---

Wednesday, February 27, 2008 7:28 AM CST

Today it has been 3 months since Zachary Ryan - The one and only - died. The heart ache has not decreased. But I know from Sam that it never really does. There are just more days that one can wake up and make themselves face the world in some sort of functional manner.

Below is a snapshot of the flyer for the memorial blood drive. The print is quite small but I wanted you to see the great flyer that the Blood Center of Wisconsin made for him.

If you have not registered please call today for your appointment. There are 190 slots available and the student council would like to fill each and everyone. 190 donors = 190 pints of blood = 570 lives saved. How easy is that? Please call Cindy Hunter today to make your appt on March 7th between 8 am and 1 PM. Cindy's number is 262-970-3915. One hour of your time - an hour I know is hard to spare - will have unimaginable consequences for three people - three lives that you have the capability of sustaining.


Monday, February 25, 2008 9:28 PM CST
Abby and I got home this afternoon. It is supposed to snow. It is gray. Need I say more?

We really had a wonderful time...more later. I still have to eat dinner. I got too used to someone putting food in front of me. Good thing for frosted brown sugar mini wheats!

---

Wednesday, February 27, 2008 7:28 AM CST

Today it has been 3 months since Zachary Ryan - The one and only - died. The heart ache has not decreased. But I know from Sam that it never really does. There are just more days that one can wake up and make themselves face the world in some sort of functional manner.

Below is a snapshot of the flyer for the memorial blood drive. The print is quite small but I wanted you to see the great flyer that the Blood Center of Wisconsin made for him.

If you have not registered please call today for your appointment. There are 190 slots available and the student council would like to fill each and everyone. 190 donors = 190 pints of blood = 570 lives saved. How easy is that? Please call Cindy Hunter today to make your appt on March 7th between 8 am and 1 PM. Cindy's number is 262-970-3915. One hour of your time - an hour I know is hard to spare - will have unimaginable consequences for three people - three lives that you have the capability of sustaining.



Monday, February 25, 2008 9:28 PM CST
Abby and I got home this afternoon. It is supposed to snow. It is gray. Need I say more?

We really had a wonderful time...more later. I still have to eat dinner. I got too used to someone putting food in front of me. Good thing for frosted brown sugar mini wheats!

---

Tuesday, February 19, 2008 10:24 AM CST

Abby and I are leaving for Florida Wednesday night to visit my Mom and Frank. We’ll be home Monday. I am looking forward to spending time with Abby, and of course our hosts. I am looking forward to sunshine and warmth. I hope to be able to just forget work for a few days.

I know we’re lucky to be getting out of here for a few days but it is so hard in many ways to leave. I understand that Zach’s body in Salem Cemetery is not Zach but I always have a hard time leaving.

More than anything it just seems wrong that tomorrow we leave and I have not packed. I should have started 2 weeks ago contacting IV pharmacies and hospital labs and finding out what tubes they use. Our hematologist should be calling another hematologist in case anything happens on vacation and blood or platelets are required.

Peter should be signing letters requesting permission for me to draw my own children’s blood and for lab results to be released to me, notifying the airlines that we have to be allowed to take “sharps” and narcotics on the planes and no, the IV pumps cannot be turned off during take off and landing, and yes, the mother can be in charge of the oxygen rate on the plane and please do not try to disconnect IV lines during security searches.

I should be looking at 10 page lists of supplies and figuring out what we take, what gets shipped and how often we will need an overnight shipment because we will only have one medium sized refrigerator, a fact I know because I picked a place to stay based solely on how big the refrigerator is, given we need several at home for a week’s worth of medicine.

I should be getting portable oxygen for the airplane and then finding someone to supply while we are on land. I cannot forget extra dressing kits because one can’t be too careful with central lines at the beach. I should make sure we’re at the airport early to get through security and ask for assistance because there is no way that Abby and I can carry everything that has to actually be on the plane with us.

I can’t forget the blood pressure monitor that will work all night, the “emergency kit” of all sorts of meds and supplies – it takes up ½ a suitcase – and then there are things I learned I needed after the first vacation when I did not think of them: labels for the blood tubes, scissors and needle boxes that can be mailed home and many copies of medical summaries because no one ever gives it back once I hand it over. And when all that is done I have to remember that I actually have to pack clothes and tooth brushes, although at least we can always buy that stuff if we forget it.

Yes, that is what I should be doing. I had it down to a science. Computer check off lists and counts of exactly how much of everything is required each day. I was always tired and stressed packing but it was always worth it to be able to take my kids on a vacation. And that is really what I miss….taking FOUR kids to places they never saw, places they anticipated with excitement for week, places where they played together and made new memories. I miss all the chaos of packing for children with medical complexity – not because I love plastic tubing, cardiac drips and gauze – but because it is what I should be doing – what I would be doing – if my boys were here. I miss it because it was part of a world that included my boys and that world is gone. I miss it because I miss Zach and Sam so much. And like Auden, I wish the clocks would just stop. I’m not sure I understand why they haven't.

Don’t miss understand. When I talk of missing my boys, people often remind me that I have 2 girls. Of course I do - how could I ever forget that? But my 2 girls do not replace my 2 boys any more than my 2 boys could ever replace my 2 girls. I love my girls so much and I truly cherish the time I have with them. Abby and I have been spending a lot of time together since Christmas and I feel lucky to be part of her life -knowing that any moment with a 14 yr old is definitely a gift. Last weekend Brittany came home and we had a lot of fun, despite my backseat driving that drove them all nuts. We went shopping and ate out and had good talks and watched movies. It was just so nice to have my girls both home. I do not ever forget that I have two precious girls who are very alive and very wonderful.

I have included Auden’s poem, which I love, despite the sadness of it. Although I know that the last line cannot be true – “nothing good can ever come” – it feels as though it is some days and it seems the world should have just stopped the moment my beautiful Sam died. But then I would have missed 2 years and 8 months and 24 days with Zach. And if it stopped now, I would miss more years with the girls. I know all of this but my heart still says that a pause in time acknowledging the world's loss of my two boys' lives would be appropriate - even if just for a moment.

To counter the somber mood of “funeral blues” I do have one funny travel story about Sam. Once upon a time when Sam was about four or five we were in an airport when Zach said something about bombs. I told Zach he really could not say that word in an airport. Sam, being Sam, decided that was all he needed to make a point of saying "that word" in the airport. So as we went through the airport and security that child chanted – quite loudly at times – “bomb, bomb, bomb” …”bomb, bomb, bomb”…. I think one gets the idea. I told the security guard “Oh no, he is not saying THAT! He’s saying Mom, mom, mom…he has speech issues.”

Sam – the instigator. It was tough to ever be mad at him, however, because his big brown, long-lashed, eyes fairly danced when he sat back and surveyed the disturbances he created.



Funeral Blues
W. H. Auden

Stop all the clocks, cut off the telephone,
Prevent the dog from barking with a juicy bone,
Silence the pianos and with muffled drum
Bring out the coffin, let the mourners come.

Let aeroplanes circle moaning overhead
Scribbling on the sky the message He Is Dead.
Put crepe bows round the white necks of public doves,
Let the traffic policemen wear black cotton gloves.

He was my North, my South, my East and West.
My working week and my Sunday rest,
My noon, my midnight, my talk, my song;
I thought that love would last forever; I was wrong.

The stars are not wanted now: put out every one;
Pack up the moon and dismantle the sun;
Pour away the ocean and sweep up the wood;
For nothing now can ever come to any good.

---

Friday, February 15, 2008 2:55 PM CST

One year ago today Zach had his pacemaker placed. Once he got through that surgery and recovery I thought we had conquered death – at least in the short term - at least for a few years.

Sam died following an acute drop in his heart rate. His heart was beating normally and then it wasn’t and quickly it progressed to stopping all together so that one hour from the time I lay in bed with my little boy, watching his monitor, comforted by his perfectly beating heart – one hour later - he was dead. It seemed surreal and still does when I think of a laughing little boy who begged me to read to him that very morning, lifeless 18 hours later.

It is possible that Sam died because I did not take him to Children's Hospital myself, and instead relied on an EMS system and community hospital that was not prepared for a child like Sam. It is also possible that this is not why Sam died – that he would have died even if I took him to Children’s, even if the EMS system was ready for him and the treating ER doctor cared and/or knew enough to call for help. But because the word possible is part of each of those sentences, it leaves Sam’s death both a question and an answer. If Sam died because I did not take him to the hospital, because there were identifiable problems in every step of the process from the 911 call to his death in a community hospital, then there is an answer to prevent the same from happening to Zach. Fix the system, pass by the community hospital, take child directly to Children’s at the first sign of a dropping heart rate and thus, save child from a heart failure death.


So on Feb. 11, when Zach’s heart rate fell from 60 to 50 to the high forties, I wrapped him in blankets and drove through the windy snow/rain to Children's ER. I bypassed the EMS system, even though I was fairly sure that the system had changed positively after Sam’s death. Zach was admitted and hooked up to monitors in the ER as his heart rate dipped below 40. I was scared but knew he would be ok because I had followed the formula that would save him from heart failure death. The next day we began making plans to insert a pacemaker.


One of the ICU/anesthesia doctors warned that the pacemaker might not possess the power that I had bestowed upon it. He said there could be a time when Zach's heart just could not pump due to lack of energy. In that case, no matter how perfectly the pacer functioned and prompted the heart, it simply would not have the power to restore or augment the beat to an energy depleted, unresponsive heart. He was worried about a heart that had non-electrical reasons for not responding - a heart that did not simply need it’s rhythm corrected or restored, did not just need a little push to beat faster or a little restraint to slow down. He was worried and went so far as to predict that in that case – the case of a heart too weak to work - the pacemaker would be useless – like whipping a dead horse – or worse, perhaps like whipping a horse that is barely walking, resulting in a dead horse.

I was so mad at that doctor. I wanted to wipe his smirk right off his face. He said that he would not do the anesthesia and I said I could care less because he was number 3 on my list anyway. And who had asked for his opinion in the first place. How dare he try to deny Zach the one thing that was guaranteed to save him from a heart failure death - how could he look me in the eye, the mother of a child who did not have the benefit of a pacemaker – and say such things. Where was his hope or had he never possessed any? Did he think Zach’s life was not worth the effort?

At the end of the day we brought Zach down to the “holding area.” (Why do we persist in calling a place where we wait to hand our children over to surgeons, the holding area?). The anesthesiologist who had refused to be present at Zach’s surgery, my number 3, walked in and proceeded to get Zach ready for surgery. I remember thinking that he must have finally realized how wrong he was. But no, he reiterated his concerns to me and I remained mad at him. For the life of me I could not understand, then, why he had decided to go into surgery with Zach.

When the surgery was almost over Zach’s cardiologist came out to the waiting room to talk with me. He was visibly shaking. Something had happened to Zach in the OR. His heart had suddenly gone bad, something called his CVP had flown up to 25 (should be less than 10), blood pressure dropped, oxygen saturations very low even on 100 percent oxygen. He said Zach was ok, thanks to the anesthesiologist we had in there. No one was ever able to explain what happened in there but it scared them enough to put Zach in the ICU and start him on a new medication drip for his heart. I took the incident as proof that Zach needed the pacemaker. Maybe it was. Equally as plausible is that it only proved the anesthesiologist’s point.

I still do not know for sure why the anesthesiologist decided to go into surgery with Zach. Maybe because he knew that what he had said, what I did not want to hear from him, was so true that he felt someone with his expertise needed to be there in case it happened. Or maybe, despite his seemingly ever-present confidence, he simply did not know for sure that he was right – and did want to give Zach the best chance at life and hope. I don’t know but I was and am thankful he was there.

That was on February 15, 2007. In the months that followed, every time we interrogated Zach’s pacemaker, it showed times when it had kicked in because his heart rate dropped too low. It was only about 2 percent of the time but those moments could have been his death without the pacemaker. Each time we interrogated I was tempted to go tell the anesthesiologist/ICU doctor how wrong he was. “Look – the pacemaker is saving his life” I wanted to tell him.

On October 4, 2007 Zach had his first cardiac “arrest.” His heart never stopped but it beat well below the 60 beats per minute programmed into the pacemaker. “Why didn’t the pacemaker work?” I asked later. The answer was confusing – for the pacemaker, as it turns out, did work. It was trying as hard as it could…he had “pulse-less electrical activity.” Huh? What does that mean? It meant that his pacer kept firing to make his heart beat, but no matter how many times it fired, and no matter how hard the heart tried to beat – and it tried – it simply did not have the force and energy to pump the blood out to the rest of his body. He would have died without intervention from the resuscitation team. This was to be repeated on Oct 19, Nov. 23 and finally Nov 27.

And now a year later I have learned that heart failure has different definitions, varies in scope and severity, progression, symptoms, impact and potential for compensation. I have learned that when it comes to matters of the heart – we have far less control than I ever though possible a year ago.

I have also learned that seemingly contradictory things are not always as mutually exclusive as they would seem. Things can both be true and false, opposites can both be right or both could be wrong. I’ve always know that most of life is gray and once in awhile things are black and white. What Zach and Sam have taught me is that sometimes black IS white, sometimes white IS black, and the worst thing we can do is to close our eyes to that possibility.

White is black: The anesthesiologist was right. The pacemaker did not save his life. Even though he lived through three heart arrests in Oct and Nov, it was not the pacemaker that saved his life. It was medication, compressions, the right people at the right time, God’s hand, perhaps the stars, prayers and any number of other things known and unknown that saved his life. The only thing we know is that it was not the pacemaker and I owe an apology to the anesthesiologist/ICU doctor.

Black is white: I was right. The pacemaker did save his life. His pacemaker kicked in while he slept, while he played and went to school, while we were in San Diego. He had it for 410,400 minutes of life and he needed it two percent of the time. That is 8208 minutes, which is 136.8 hour, which translates into 5.7 days of life that he had because of his pacemaker. The anesthesiologist owes me an apology. (I’m not going to hold my breath, however!)

White is black: Sometimes a heart – Like Zach’s or Sam’s - wants to beat desperately but just cannot. Despite medical assistance and valiant efforts directed toward what the doctors call “compensated heart failure” and non-withstanding love and support surrounding that heart – there are times a heart simply cannot, will not beat again.

Black is white: Black is white: Sometimes a heart – like mine - does not care if it ever beats again, yet it does. It compensates without heroic measures, it energizes the body despite being empty and turned inside out and it continues on no matter how searing the pain. Perhaps it is the love and support surrounding that heart that keep it beating – again and again – even when it feels like it can’t, even as it wondered how can a damaged heart such as this possibly still beat?

White is black: The overall reason that both of my boys died is mitochondrial disease. Their bodies were finally depleted of even the smallest amount of energy needed for sustenance.

Black is white: Neither of my boys died from a depletion of energy -for it was energy – both from within themselves and that which surrounded them from so many others - that sustained them beyond a point that would end most people’s lives.

White is black: The immediate reason for both of my boys dying was heart failure – their hearts simply could not compensate anymore, could no longer pump life.

Black is white: Zach and Sam did not die from heart failure. Their hearts compensated even when it seemed impossible. They had hearts that thrived throughout their lives - lives that others who did not know them pitied or imagined to be painful, neither being true. Their hearts pumped life without fail.

White is black: A dead heart no longer pumps blood. A dead heart does not beat.

Black is white: Hearts don't always die. The strongest hearts continue to pump, infusing life into all those who hold a piece of that strong heart within their own.

Perhaps that is why my broken, painful heart continues to beat and sustain my life. Perhaps the parts of Zach and Sam's strong hearts that I hold within mine, have taken over for my broken, tired, hurting, poorly compensating heart.

Perhaps Sam and Zach knew better than anyone how to prevent death from heart failure.


Wednesday, February 13, 2008 7:55 AM CST

Don’t forget about the blood drives – info listed below. The Bethesda one is TONIGHT 02-13

I’m missing my Zach so much right now. (as if that’s a news flash). This is the first time in 20 years I have not bought a box of Valentines Day cards (or many) for one of my kids. Even last year, Zach was diligently writing out his cards while he was inpatient at the hospital. Peter got Yoda, I have a feeling I got Darth Vader (personally I think those should have been reversed J and I’m not sure who else got what. Zach loved bestowing those cards on us, choosing the perfect one for each of us.

Below is Brittany’s talk that she gave about Zach at his celebration of life. It’s hard thinking about those bonds between the girls and Zach - and Sam. Thought they are unbroken, it is of course not the same without the boys’ physically here. I think of how we define ourselves, “I’m the daughter of…” , “I’m the big sister to…” “I have ____ brothers and sisters.” And how death just confuses that for a sister or brother. All the jokes, all the traditions, all the ways you KNOW you can annoy your brother….those comforting scripts are gone or sound hollow when a brother or sister dies.

Rather than go down this path on this uncommonly sunny day (albeit cold) I’ll just share her tribute to Zach. She had everyone laughing, as she spoke with such confidence and pride. We could all imagine the stories that she told. I think Zach would have been so proud – “that’s my big sister!” - as he loved laughter and jokes more than anyone (except perhaps Sam -that one may be a draw). Although there was a time period when she was in high school that they spent less time together and annoyed each other a little more, I do think those two were well on their way to being best friends for life in the past few years. And so his absence has left a hole in her heart that is deep – just as it has for Abby.



Zachary Ryan Juhlmann- the one and only


Zachary Ryan Juhlmann- the one and only- was my incredible little brother. Before he was born, I prayed every night for a little brother or sister and I will never forget how excited I was the day he was born. I will never forget the little white outfit covered in a rubber duck print that I picked out for him to wear for his first picture ever. I of course loved Zach from the moment he was born, but over the past 15 and half years I have grown to admire and respect him as well. I have never met a 15 year old with so much strength and hope and optimism.

None of us will ever forget his laugh. I remember going to the movie theater to see “Click” with my mom and Zach. Zach thought it was hilarious and laughed for nearly half the movie in his typical hysterical Zach laugh. Two minutes after a funny line, he would STILL be laughing. We got lots of stares but my mom and I got a kick out of it. However, I didn’t think it was so funny when he snuck into my room EARLY in the morning of April Fools Day when I was 17 and took all of my clothes out of my closet and hid them in his. Then he proceeded to put peanut butter on my doorknob. And I will never forget the time Zach got a tape recorder and used it to tape me yelling at him (without my knowledge) and then brought it to the hospital and played it to each and every doctor, nurse, therapist, pharmacist, and visitor who walked in the room! Although I may have been mad at the time, looking back, those stories just make me laugh.

Me and Zach shared lots of common interests- we both loved to draw and play cards, and we both loved Tetris. But I will especially remember how much Zach and I both loved roller coasters. When we went to Great America and Universal Studios, Zach would be so pumped up to go on EVERY rollercoaster. It was always us two as Abby and Sam didn’t like roller coasters and Zach would scream for the whole ride, “This is SOOOOO awesome!!!! Put your hands up Brit-tan-ney!” If I didn’t put my hands up, he would say, “Are you SCARED?!?!? Haha! I’m not scared!!! Let’s ride again!”

One thing we did NOT agree on was the radio volume. Me and Abby LOVED to turn up the radio in our car as loud as we could and Zach would ALWAYS say, “Brit-tan-ney….can you PLEASE turn the radio down??? Do we have to listen to the radio- can’t we just talk??” Once I actually made the mistake of asking him what he wanted to talk about and he quickly said, “Yugioh!” And then went on to name every character in Yugioh, what their powers were, what their weaknesses were, which ones were friends, which ones liked pizza, and so on.

I could tell stories all day, but I do want to mention what a GOOD kid Zach was. Zach is the only kid I know who cried when he got in trouble, NOT because he was mad he got caught but because he felt so bad for hurting my parents feelings. He was such a wonderful brother to me, Abby, and Sam as well. He loved to give to others and I looked forward to his homemade presents, notes and e-mails. My favorite note-, which is hanging up at my desk at work-, says, “Dear Brittany, You rule. You’re cool. You’re smarter than a super brain and faster than roadrunner. Love, your little brother Zachary Ryan Juhlmann” I read that note every day and it never fails to make me smile.

I wish there was a way that I could really put Zach into words and explain just how wonderful, caring, intelligent, unique, and special he was and how much he warms my heart. I really like how my Dad described Zach to me in a recent conversation. He was talking about how whenever me Abby or Sam would say, “That’s not fair!” Zach would imitate my Dad and say, “Life’s not fair!!” Although he thought it was funny to say that, the thing is that he didn’t seem to actually believe that or notice that his life was any harder than ours.

I am going to miss Zach so much but I know that he is busy teaching Sam about all the latest video games, cartoons, TV shows, and Pokemon cards.











There are two upcoming blood drives in Zachary and Sammy's memory. The first is at the kids' elementary school.




The second is at the kids' high school, sponsored by their student council.

---

Friday, February 8, 2008 1:56 PM CST

To read about the impact of donating blood on our family please read the essay at the bottom of this journal entry, "Sam's Donors."

***********************

Blood Center of Wisconsin has an immediate need for your help.

Wednesday’s storm, as well as severe cold and snow during the past few weeks, has resulted in a loss of nearly 1700 units of blood, which is almost three full days of collections.

All donors are asked to immediately help replenish the local blood supply. We ask that you donate blood and help raise awareness by sharing this with friends and family.

Althought donors find braving the weather a challenge, the need for blood is constant. Each day hundreds of patients in our local hospitals need blood for surgeries, cancer treatments and many other medical procedures. (patient like Zachary and Sam)

BloodCenter of Wisconsin needs to see over 800 donors each day in order to meet the needs of the hospitals we serve.

Donor Centers have extended hours on Friday until 6:00pm, and Saturday until 3:00pm.

Please call 1-877-BE-A-HERO or visit www.bcw.edu to schedule an appointment.

****************


Please see information below about 2 blood drives in Waukesha. You can donate the blood in memory of Zach and Sam, knowing that there is no better way to honor their lives than to give life to others. Your one-pint of blood will save three lives.

If you have been a donor in the past, as long as it has been 56 days from the last time you donated, you can donate again.

When I read about a shortage such as described above it takes me back to the nights I wondered if we would run out of donors (especially for Sam's platelets since he required specific donors matched exactly to him). Not having enough blood to satisfy the need is a very real possibility because there is no substitute for human blood. We rely on human donors for every life saving transfusion.

If you have never been a donor, please see the essay below, "Sam's Donors", which may give you a glimpse into one life, representative of the many lives saved by volunteer blood donors. Sometimes the need for blood is only once - like when I needed blood after Sam was born. Sometimes it is because one lost too much blood during surgery. There are times the need for blood is constant for 6 months while a child or adult is treated for cancer and there are those who need transfusions on a regular basis for their entire life. The needs are different, the people are not the same...but the gift is ALWAYS life.

*****

And although blood donors can never be repaid the worth of their gift of blood, the Blood Center of Wisconsin is offering a Warm Weather Escape Sweepstakes .

All attempting donors at both donor centers and mobile blood drives between January 1st and March 15th will automatically be entered for a chance to receive:

One of Five $150 gift certificates to a local spa – treat yourself to a small escape – a relaxing massage or other spa treatment.

And one lucky donor will win:

A Grand Escape trip for two including round trip airfare and accommodations for 4 days and 3 nights to your choice of one of these warm weather destinations:
– Scottsdale, Arizona
– Miami, Florida
– St. Lucia
– Montego Bay, Jamaica

Official Rules posted at all BloodCenter of Wisconsin Donor Centers and at bcw.edu

*********


There are two upcoming blood drives in Zachary and Sammy's memory. The first is at the kids' elementary school.




The second is at the kids' high school, sponsored by their student council.




*********


SAM'S BLOOD DONORS

- Anne Kathryn Juhlmann

When my son Sam was 15 months old he was diagnosed with an incurable, mitochondrial disease that makes it difficult for his body to produce the energy needed to grow and thrive. By the age of two, his bone marrow, starving for energy, stopped producing the blood cells that his body required. In the beginning he was only dependent on red cells, which are needed to carry oxygen throughout the body. Now he needs platelets, plasma, and cryoprecipitate transfusions –all of which help his blood to clot. Without these blood products my child will die.

That is what Sam has. That is what Sam needs. Yet none of that tells the story of who Sam is. Sam is six years old - a child with blond hair, big brown eyes, and long eyelashes that lay softly against his cheeks when he lies sleeping. He is considered tiny for his age yet his presence is enormous. At times I marvel that Sam has a profound disease of energy production, for Sam is all about living energetically and loving powerfully. He loves to tell jokes – none of which are funny. Yet to hear his uninhibited laughter at his own jokes is to step into the sunshine from the shadows – so we ask him to tell the jokes again and again just to hear his laughter.

A study in contrasts, Sam is strong, independent, and resilient. His eyes twinkle with pure joy whenever I kiss him. “Ha! Ha!” he proudly announces with his hands on his hips, “I wiped your kiss off again!” and he bursts into laughter. Loving and sensitive, he pats the mattress beside him each night. “Climb in Mama, ” he says. I lay beside my little boy, surrounded by approximately 30 stuffed dogs. He tells me about something he did that day, how he wants to be the Yellow Power Ranger for Halloween, how he can’t wait to go to Kindergarten so that he can have recess “just like the other kids.” As I walk out of his room each night, I hear him say, half asleep, “I love you 500 and 700 Mama!” Sometimes my eyes fill with tears. I count my time with him as precious and store these moments in my heart.

Still, my life is impossibly marked by what he has, by what he needs. On my daughter’s 10th birthday, Sam bled uncontrollably. She asked, “Will Sammy die if the blood center runs out of blood?’ Fear grips my heart -after all, only 4-percent of the population in the Midwest donates blood. 4-percent does not sound like a lot to me. She persists, her voice quivering. “Will Sam die if I do not give him my platelets?’ She starts crying and I realize I have to reassure her. I begin, falsely at first, but my own words have the unexpected effect of comforting both of us. I tell her that Sam’s dependence on blood products is scary and it is true that he will die without the blood. Yet, there has never been a day it has not been there for him because of the endless efforts of the Blood Center of Wisconsin staff and because of the goodness and compassion of the donors in our community.

Increasingly I wonder who are the 4 percent that volunteer to give a part of themselves so that my child and others who need blood products may live? Day after day, week after week, year after year they are faithful. I have days that are so busy that I cannot imagine adding one more task -–then I stop and think about the person who donated blood during the only free hour they had. “Date collected” is stamped on the bagged blood products that Sammy receives. I take note of these dates. June 14: Sam and I finished planting his garden on a beautiful Saturday while his donor gave platelets matched just for him. April 18: Sam and his 3 siblings painted Easter eggs while his donor gave the whole blood, which was later made into cryoprecipitate. May 9: Sam’s birthday. He requested and helped make a purple cake with orange frosting while his donor gave the red cells that he can no longer make himself. Who are these people who give, expecting nothing in return, allowing him these priceless moments of life?

The answer finally comes while reading a 4th grade social studies textbook with Sam’s brother. A family, the book states, is a group of people bound together by blood. Could I count the ounces of blood that bind Sam to those who have given it to him? A family is multigenerational. I imagine the donors – grandmothers, young mothers, college students, and middle-aged men. A family is a vital source of strength and compassion. They give assistance in time of need. “Vital,” I tell my son, “Means necessary to staying alive.” When we read about the “fabric of family life” I think of a patchwork quilt – each piece unique but interdependent - together creating a whole. A family is a network. As we talk about a net, designed to catch something so it does not slip away, I realize I have finally found my answer. Who are Sam’s donors? They are a part of his family; tirelessly giving a piece of themselves, without whom there would not be a story of who Sam is. Bound together by blood, vital to all he is and will be –that is who Sam’s donors are. I will never be able to thank them enough.


© 2004; May be used only with permission from author

---

Monday, February 4, 2008 10:59 PM CST

Last week I spoke to the medical students. This is nothing new –a colleague and I give a workshop every other month during each group’s pediatric rotation in their 3rd year. But I have not spoken to them in a long time. Not during the fall and certainly not in the 2 months following Zach’s death. It felt odd to tell them about Zach. I am so used to telling them the latest stories as examples to illustrate my points. There are no latest stories and that stings. Yet I am glad I did it. Sam and Zach taught me – and many others – so much about what it means to heal a person, in the absence of a cure. And their longtime, consistent doctors taught me so much about how to care for a family -not just a patient. I hope to always be able to share those lessons with the medical students – lessons that I would never have learned without my boys and their doctors.

Abby had her Sadies dance on Saturday night (girls ask the boys). She looked beautiful – as always. I can only imagine how many things Zach would have had to say to her starting with how long it took me to curl her hair! The pain of Zach not being here has really started to hit her. They are only 13 months apart and I raised them as twins. They shared a room, went everywhere together, were best friends, in the same grade, etc. When they were little she would sob whenever something painful was done to him like a blood draw (he would not even shed one tear). It was as if she felt the pain physically. When he needed his feeding tube changed he wanted to hold her hand and she was always there even though there were times she looked like she would pass out…not because of the procedure but because she was so scared it would hurt him. They, of course, quarreled as they entered their later elementary years but it was never anything even remotely close to the arguing that most siblings do. I think that one of the memories I will hold closest to my heart forever, is from the day he left for the hospital in September. She helped him into the car and hugged him and said, “I love you.”

She misses him and hurts and in turn I hurt. It is another thing I cannot fix. I think it must especially be hard to be 14 because kids her age just do not acknowledge death after the funeral. I’m not sure if it is because they are 14 and just don’t think about it or if they think it is best to never mention the boys’ names. I remember how devastated Brittany was as a senior in high school after Sam passed away. Prior to the funeral our house was filled with her friends – they overflowed and they held her together. The day after the funeral she went back to school and aside from one friend, Sam was never mentioned again unless it was in relation to a fundraiser in his name. It was as if she had never had a little brother. At the time Zach and Abby were in 6th grade and their friends, while not overly talkative about Sam, circled around Zach and Abby for a long time after the funeral. They made blankets for the kids. Everyone in their classes signed them and I still remember how proud Zach was. He took it to the hospital and showed anyone and everyone what his friends had made for him. Sam’s friends, by way of comparison, were in 1st grade and had absolutely no inhibitions about talking to me about how much they missed Sam and where was he and why did he die and was I sad, etc. Out of all the age groups, they were the only ones who seemed comfortable. It was surprising to me but I loved them for that! (and many other reasons)

Brittany is going to come home this weekend. We miss her so much and she wants to help Abby with her soccer and just hang out with Abby. I wanted to go to Minneapolis but Abby has a soccer game and will not miss it. So if we cannot go there, this is the next best thing.

These are the things that bring me comfort - the relationships between my children. Brittany and Abby, Abby and Zach, Zach and Brittany, Sam and his big sister, Brittany, and his “little sister”, Abby (Sam always referred to Abby as his little sister because after all – she was smaller than Brittany)…and of course best brothers Zach and Sam. I know that no matter what happens in life, no matter what happens to me, my girls will be there for each other and they will always have a bond with their brothers that shapes their lives, even as the girls shaped the boys’ lives. As a mother this is one of the greatest gifts I could be given.

On a completely different subject….Lucky for us our newest neighbors are originally from Louisiana so we are having a Fat Tuesday neighborhood get together tomorrow on Super Tuesday. (Not Super Tuesday here, however, because Wisconsin primaries are not scheduled for a few weeks). It will be good to see our neighbors assuming I actually propel myself out the door. I am not too good at leaving the house except for work. I think that the Jambalaya, made by a true southern girl, may just be the thing to kick me out the front door.

Two more weeks until Abby and I go to Florida for 5 days to see my mom and remember that there is a sun. If it rains even once there I am going to be convinced that black clouds follow me.

---

Sunday, February 4, 2008 10:40 PM CST

If you cannot make Zachary's memorial drive there is another local blood drive at the kids' elementary school. This one is not in Zach's memory but the blood all achieves the same purpose - it saves lives. No matter where you give, you are giving the gift of life to someone who will not survive without donors like you.

One volunteer donor

One hour of time

One unit of donated blood
_________________________

= THREE lives saved







Tuesday, January 29, 2008 10:50 PM CST
I really do not like winter. If a normal, every day person with a wonderful life can get depressed when the sun goes on hiatus, imagine what it does to a person who is already sad. At work there are no windows in our offices due to construction so that takes away the sun three days a week. Today…I was at home all day and I even have windows. But… I opened my blinds and guess what? It did not get any lighter in the house.

It has been 2 months and 2 days since Zach passed away and the thought of getting through another two months and two days feels insurmountable. I’ve had a particularly hard time with the fact that there just are not any rules in life – at least not the ones I want. I want there to be rules that make sense to me. If A then B – always, no exceptions. Just steadfast rules one can count on like:

If a mother loves and does her best for her children then they will grow up and do the same for their children.

If a mother advocates for the best doctors, medications, most aggressive, latest, greatest treatments then her child will not die and surely not from the one and only thing she thought she and the doctors had control over given her child did have the most aggressive, latest greatest treatment.

If a child is kind, makes a difference in the world, brings people from all walks of life together, makes people believe in hope and miracles then God will not remove that child from this world.

If a mother wakes up every day after her child dies, puts her feet on the ground, does not run away from grief, cares for her other children, goes to work, does her best to read the newspaper and take interest in who will win the democrat primary, makes a conscious effort not to become bitter, suicidal, an alcoholic or a drug addict…then that mother will walk forward. She will definitely not have days when it feels like her child just died and she took five steps backwards. This rule has one exception: if two of her children die then her efforts will be rewarded twice as much. (Maybe the variable is the party of affiliation? …If one cares who wins the republican primary then does this rule work?)

If one cries enough then eventually there will not be any more tears.

These are the rules I want. It’s hard to be smacked in the face with the reality that as hard as I tried, I did not, do not have the power to cure my boys and I cannot spare my girls from mistakes or sorrow.

But I do take consolation in the fact that there are some rules…at least I think there are.

One cannot grieve for someone more than one can love someone. The two emotions will always be commensurate. On one hand this is not comforting because I love all of my children with all of my heart…so that adds up to a lot of grief. But at least I can be assured that the grief will not be larger than the love.

If a child is kind, makes a difference in the world, brings people from all walks of life together, makes people believe in hope and miracles then even if that child no longer lives on earth in the physical sense that we are used to…. they do live on and continue to inspire others.

If a mother loves her children she will feel their pain and her own…but once she has those children, if she is asked “would you do it again knowing what you know now?” she would not hesitate in saying YES, for she could not imagine missing out on any one of her four children’s lives - no matter how long or short or filled with challenges they may be.

If a mother watches enough Star Wars, Buzz Light Year and Justice League with her children then she finds herself asking the questions “What would Yoda do?” or “How would Buzz handle this?” Seriously.

If we wait long enough eventually the sun will come out and it will be warm again - even in Wisconsin.
******

Wednesday, January 30, 2008 is Brittany's 21st birthday. I could write about what a gift she is and how precious she has been in my life....and she is and has been. But I think the below link says it all. Take away the question of "how can she do that medically?" and what you have left is a beautiful, compassionate, loving girl.
HAPPY BIRTHDAY BRITTANY

http://kstp.com/article/stories/S322824.shtml?cat=206

---

Tuesday, January 22, 2008 9:50 PM CST

West High School is having a blood drive in memory of Zach on March 7th. More details to come but please consider donating as we are opening it up to the community -not just the school. I know many feel helpless in the face of grief because you cannot fix it or even ameliorate it. But if you are healthy and able to give blood, you will provide the same gift of life that anonymous donors and the Blood Center of Wisconsin gave to my boys every single day, year after year. Moreover, if their story can be used to help others, it allows their lives to continue to accumulate meaning, despite their physical absence. Many more details to come.

The autopsy is close to being final. I am thankful for Zach and Sam's doctor who has spent time with me in the last month as we learn bits and pieces. There are a few tests that need to come back and be folded into the report and then I believe it will be done. I read a caringbridge site last night about a family who received the autopsy report (I assume in the mail) and thus were left on their own to read and interpret. I cannot even imagine Peter leaving me alone to read it for the first time by myself. It is overwhelming on so many different levels. We never did an autopsy on Sam. Zach’s has been terribly hard, although I think it is good that we did it. The problem is that these things can only be absorbed in tiny increments and the impact of what I know thus far is devastating. I need to leave it at that for now, except to share the one bright spot of that autopsy…

Zach's brain looked wonderful. There was not evidence of ischemic brain injury (brain injury caused by lack of oxygen to the brain) for which he was at grave risk due to his heart stopping. He did not bleed or form massive clots in his head - both having been concerns to some staff. I knew with EVERY fiber of my being that my son was connecting with me when I talked to him, read to him, laid my head against his. I knew he was not brain injured.

I understand why so many people thought he was and I certainly cannot find fault with their rationale but aside from some fleeting, sporadic fears that maybe I was in denial, I never went there… I always knew Zach was with me. My funny, courageous, amazing son stayed with me until the very last minute. There is a part of me that just cries at this information, that a body can so completely fail such an alive and bright boy. But I would rather it be this way than the alternative

Anyone who has read this site since it started knows I have made a concerted effort to not post pictures of my boys with medical equipment. Once in awhile it made its way into a picture but that was never the focus. My goal was never to prove they were the most complicated cases of mitochondrial disease ever seen or that they had the most medicine or the most equipment. I have only wanted the focus to be Zach and Sam - the children. Thus, I have hesitated to post a few pictures from the ICU because he is intubated in them (breathing tube in his mouth) and I don’t want that fact to dominate the pictures. However, they are the last pictures I have of Zach and I honestly find them precious. As a mother it was beyond important to me to preserve Zach’s dignity. I tried to be very cognizant of this his entire life, especially as he got older and even more so during his 9 weeks in the ICU. (And staff/family and friends did a wonderful job of doing that too!) However, given I can now say with perfect assurance that he was tuned in, interacting in the ways that his body allowed and part of day-to-day life in the ICU I don’t think they take away his dignity. It makes me smile to think he was most assuredly part of our Darth Vader balloon daily saga/humor.


Monday, January 21, 2008 11:20 PM CST
Below are emails from this summer between Zachary and my mom. At the time my Papa (Zach's great grandfather) was quite ill. He's doing great now! In my opinion these are especially precious emails that he wrote for they show wisdom, kindness, compassion, interests and humor. I added a few little notes (in parenthesis and italics)

Dear Grandma
I think I replied to you but it has been a while and I cannot remember if I did. Thanks again for the mint italian soda. I like it a lot when you come over. we will have to watch some STAR WARS this summer. I know you watched episode IV the first made and episode I but you have to watch the best ones. Episode II and III. These are the ones that change Anikin into Darth Vader with more dangerous bad guys such as Count Dooku, General Grievous, and the Emperor. I hope you reply soon and I will try to get to the computer earlier too as unusaul.
Love the 15 years 2 months and 7 days young teenage 9th grader-Zachary

***

Dear Zach,
I loved the way you ended your letter. And yes, I would like to see those episodes, and also your story.
Papa went to the hospital yesterday. I am going there now.
I love you very much. Sorry this is so short, but Papa is alone and I have to get there.
Hugs, Gramma

***

To Grandma
Sorry Papa is so sick. I hope you can help him. I think talking to him will help him. When Sammy was sick every time Me and Abby talked to him his heart rate went back up but he eventually had to go to a hospital. ( he is referring the night our Sammy died ) Anyways don't get too hot ( Papa lives in Arizona and it was June! and get Papa to his normal self. Though I also hope you get back soon.
Love Zachary

***

Dear Zachary,
It makes me so happy to hear from you. I am taking your advice and talking to Papa a lot. He had to go to the hospital for two days, but he is back home now. He likes music so I put a CD on for him. I am making meatloaf. I will see you, if all goes well, on Friday, the 29th of June. I can't wait. We should celebrate. I love you. Gramma

***

Thanks for taking my advice to papa. I learned a lolt that night of sad, sad death but that is just how we humans live. You know. no offence but Meatloaf is my least favorite meat food which I don't like especially with ketchup but thats not your fault and if papa feels good enough to eat I'm glad your making it.
Love, Zachary

***

Anne's note:
I sure am glad he let her off the hook for making meatloaf! I have to agree with him that the stuff is a little icky! Sorry Mom - it's not your meatloaf - it is ALL meatloaf.

---

Friday, January 18, 2008 2:01 AM CST

Random thoughts from the sleepless:

Do headstone/gravestone makers actually get someone’s business when they solicit through the mail? I know they are a business that relies on customers like everyone else but really…. it just makes me NOT want to use those companies. To me it is the equivalent of ambulance chasing lawyers (not to say that all lawyers are ambulance chasers!) How do they know to send that to me? Do they read the obituaries and then wait a few “appropriate” weeks to send glossy pictures of tombstones? Well, I can go to my own cemetery and see samples up close and personal, thank you very much. It reminds me of the times I got speeding tickets and then a few weeks later a letter from an attorney arrived, offering to represent me in court. (None of you ever got speeding tickets, right?) By the way, here is a random memory stirred up by my random thought…. my brother is a lawyer but Sam, with his hearing issues, heard that a bit differently. He told everyone about his Uncle Mike, who goes to work to be a “liar.”

Physicians get a bad rap in terms of compassion and empathy, which has nothing to do with the above paragraph…but these are random thoughts – remember. Back to the MDs. Sure, some suffer lack empathy and compassion, but so do some engineers, teachers, mail carriers and even “liars.” Here’s what I have noticed - both after Zach’s death and after Sam’s death: physicians (attending level and residents) are the only professional group that *consistently* express their sympathy and/or simply just treat me like a human being. I have yet to have a physician avert their eyes and pretend not to see me or pass me without saying hello (assuming they know me). Uniformly, they ask me how I am doing, say they are sorry about Zach or simply talk to me about something…anything. The point is they do not avoid me.

This does not mean that I have not been treated well by many others in the health care profession – nurses, lab techs, administrators, pharmacists, social workers, etc. But it is striking to me that the physicians as a group do not shy away from death. Now why is that? A few doctors I asked said “well we’re probably more comfortable with death because we see it more.” I don’t know…. maybe…but don’t so many others working in a hospital see death just as much? And yes, I am very close to some of Zach and Sam’s doctors so I understand that one might think my perception is skewed. But there are physicians that treated Zach for only a year, or a month or even just a week in the ICU, and there are residents and fellows I knew just a little…and no matter the time frame or intensity of relationship, they do not avoid me. I wish I understood it. I don’t, but would like to. And I reiterate, that this is not an backhand attempt to insult any other health care provider group -we all know how close I am to so many of Zach's non-physician providers. I guess it is just a vote of confidence in the humanity of physicians.

If you need more convincing, read the book “Soul of a Doctor” which is a bunch of essays by residents from Harvard Medical School. Come to one of the medical student workshops I give…I am always impressed with their reflections. Or someday, maybe I will get permission from our residents to publish an anthology of their reflective prose and even poetry that they write during the three year TEAM curriculum that I coordinate. Their writing brims with insight, humility and empathy and it often gives me pause and exposes me to a new perspective.

Why are there so many fishbowls in the hospital? I understand the obvious ones like you cannot have put a “do not disturb” sign on your kid’s hospital room door. But why don’t hospitals have something like a laundry chute or a secret exit for parents who have just had a child die? Rather than having to walk past people who are uncomfortable seeing the parent whose child just died, one could just go through the bereavement secret exit, get in the car and leave. Why are hospital chapels in places where one basically has to ride an elevator of people and then walk through the very hub of the hospital? And this is not just my hospital – I’ve been to lots of children’s hospitals and the chapels are seldom in places that one can get to without passing 100 people.

How does a health insurance company find out that one of their members died? I have to wonder if there is any mechanism in place for that or they always find out through awkward phone calls like I have had. In the past month Humana has called twice telling me that Zachary has met all the qualifications for case management. I feel sorry for the person on the other end of the phone. How awkward for them and how heart breaking for me. Twice, I have had to tell them that actually he does not meet the criteria for case management. He is no longer in their service area. He is out of their network - utterly and completely.

But obviously the right hand does not speak to the left because even after explaining that a few times on the phone, I got a letter about their hemophilia program (not that he has hemophilia but in their defense I guess bleeding is bleeding.) “Our information indicates that you (Zachary) may benefit from the additional support of a hemophilia program.” Well, obviously in this information age, they don’t have even the most basic information - like who is alive and who is not! It goes on to say, “Only you and your doctor know for sure what conditions you have so if this letter has reached you in error, please accept our apologies.” Apology accepted but I have to honestly admit that my assumption was that with the kind of bills Zach had, thanks to Factor 7a, (which we should all have stock in) the entire senior management of Humana would have received a group alert on their blackberries. At any rate, I had to talk with someone about Zach’s bills Wednesday and she assured me she would make a note in the computer than he will NOT benefit from any of their programs anymore. I have to say she was extraordinarily kind and promised to help me straighten out the mess of claims and bills.

And what about hospitals themselves? I got a call asking me to reschedule Zach’s appointment with the pulmonary clinic in March. I did not return the call but they called again. Do you know how tempting it was to say nothing and reschedule? The completely illogical thought ran through my head that maybe if I just rescheduled it, then he would be back in time for that appointment this spring. Perhaps this is why it still says “boys’ therapy” on my Monday and Thursday calendar even though “the boys” stopped having therapy on March 3, 2005. And perhaps that is why “Zach’s therapy” will likely remain on my Wednesday morning calendar for many years. I think my brain knows that we won’t be going to therapy any more….but just in case my brain is wrong and my heart is right, I leave it on the calendar. That is the illogical, 100 steps behind reality path that grief takes some times.

And finally…where were orthodontists like Abby and Zach have when I was a kid? Abby had her final consult today before getting her braces next week. Dr. M is so good about how he explains things to the kids….I remember this with Zach. He explains things so that one cannot help but be compliant because as a kid and adult you “get it.” And he is kind and funny and they both really like him, as do I. Plus, he went to Zach’s funeral, which I thought was pretty great when we have only known him about a 18 months.

We were remembering today about how much Zach wanted braces, but due to a medication he required, the risk for complications was too high, and thus he could not have them. Dr. M spent so much time researching, trying to find the right thing to do but it just was not to be. Zach was disappointed but he accepted it, as he accepted everything that came his way in life. He still had to see Dr. M every few months and Zach just loved going there to see both him and his dentist. Awesome clinic. Awesome staff!

Actually that was not the final thought. The final thought is…it’s really cold here in Wisconsin. Really cold!

Now maybe the sleepless can sleep. I kind of doubt it unfortunately!

~Anne

---

Tuesday, January 15, 2008 0:42 AM CST

A friend sent this to me. I had never read this before and felt it expressed things very well for me....so well, I wish I could claim authorship for it!

The Gap
by Michael Crenlinsten

The gap between those who have lost children and those who have not is
profoundly difficult to bridge. No one, whose children are well and intact can be expected to understand what parents who have lost children have absorbed and what they bear. Our children come to us through every blade of grass, every crack in the sidewalk, every bowl of breakfast cereal. We seek contact with their atoms, their hairbrush, their toothbrush, their clothing. We reach for what was integrally woven into the fabric of our lives, now torn and shredded. A black hole has been blown through our souls and, indeed, it often does not allow the light to escape. It is a difficult place. For us to enter there is to be cut deeply, and torn anew, each time we go there, by the jagged edges of our loss. Yet we return, again and again, for that is where our children now reside. This will be so for years to come and it will change us profoundly. At some point in the distant future, the edges of that hole will have tempered and
softened but the empty space will remain – a life sentence.

Our friends will change through this. There is no avoiding it. We grieve for our children, in part, through talking about them and our feelings for having lost them. Some go there with us, others cannot and through their denial add a further measure, however unwittingly, to an already heavy burden. Assuming that we may be feeling "better" six months later is simply "to not get it." The excruciating and isolating reality that bereaved parents feel is hermetically sealed from the nature of any other human experience. Thus it is a trap – those whose compassion and insight we most need are those for whom we abhor the experience that would allow them that sensitivity and capacity. And yet, somehow there are those, each in their own fashion, who have found a way to reach us and stay, to our comfort. They have understood, again each in their own way, that our children remain our children through our memory of them. Their memory is
sustained through speaking about them and our feelings about their death. Deny this and you deny their life. Deny their life and you no longer have a place in ours.

We recognize that we have moved to an emotional place where it is often very
difficult to reach us. Our attempts to be normal are painful and the day to day carries a silent, screaming anguish that accompanies us, sometimes from moment to moment. Were we to give it its own voice we fear we would become truly unreachable, and so we remain "strong" for a host of reasons even as the strength saps our energy and drains our will. Were we to act out our true feelings we would be impossible to be with. We resent having to act normal, yet we dare not do otherwise. People who understand this dynamic are our gold standard. Working our way through this over the years will change us as does every experience – and extreme experience changes one extremely. We know we will have recovered when, as we have read, it is no longer painful to be normal. We do not know who we will be at that point or who will still be with
us.

We have read that the gap is so difficult that, often, bereaved parents must attempt to reach out to friends and relatives or risk losing them.

This is our attempt. For those untarnished by such events, who wish to know in some way what they, thankfully, do not know, read this. It may provide a window that is helpful for both sides of the gap


ANNE's NOTE: Thank you to those who have tried and have found ways to walk with me - after Sam left and now after Zach.

---

Sunday, January 13, 2008 7:48 PM CST

THANK YOu to everyone who has sent pictures! I am not feeling great - nothing specific. I'm just extremely tired and achy and slow at getting anything done. Sooooo - If you have not sent info or a picture to me it is not too late because I have not done as much as I had hoped to this weekend. Plus, even when the montage is done, it can always always be edited. But thank you all the same to those who did get them to me this weekend. It gives me enough to actually work with later this week.


Friday, January 11, 2008 9:48 AM CST
January is national blood donor month. I would like to put something together about the importance of donating blood. The purpose is to post it on Zach and Sam's caringbridge site as many people read it.

I would like to include you/your children if any of you have been recipients of red cells or other blood components such as platelets and plasma. So this includes those who have received platelets, FFP (fresh frozen plasma), cryo (cryoprecipitate), IVIg (immune globulin), granulocytes (rarely given) and of course PRBCs (red cells or just called blood usually by the staff)

If you would like to help please send me a picture of whoever received the blood product (in jpg format only)

I also need the following information

1)Name (first name will only be used)

2)age when received blood or note chronic since age ___ if you/your child needs blood on an ongoing basis. Please note what blood product was given (see list above)

3)If your child received the blood for a finite period of time you could note how many transfusions. For example he got 4 units of blood before surgery. Others, like my sons, will have numbers we cannot possibly count or we’d be in the 5000 range. So you could say “every day” for 6 months or “4 times/day for 2 years” or whatever.

4)Primary diagnosis

5)Reason why blood needed (this may be different than primary diagnosis. For example I needed red cells after Sam was born. My diagnosis was anemia but reason was "blood loss during childbirth." Another example would be my sons who have a diagnosis of "mitochondrial disease" but the reason they were dependent was "bone marrow failure."

6)If you are a DONOR – please feel free to send me your name (first name only will be used) and picture (jpg) and what you have donated in the past. You can tell me your age or occupation if you want, which drives home the point that donors are people between 17 yrs and 200 yrs from all walks of life. But you do not have to give me that information.

5)Everyone: Please cut and paste this statement: On (note the date such as Jan. 10. 2008), I give Anne Juhlmann permission to use the picture(s) and information that I have sent in this email.

You may certainly give me any other information or comments if you have them. I am unsure exactly what I will be doing - likely a picture montage with pictures and text that educate people and hopefully inspire them to be a hero. I would like to show as many different reasons as possible for the need for blood and as many different recipients and ages to make the point that it can happen to anyone.

My boys would not have made it past their first few years without donors and in fact I may not have survived childbirth of Sam without a donor....so this is a very dear to my heart issue. Thank you in advance to anyone who can help with this. Please send pictures and other information by this weekend at the latest. Thanks! And feel free to share this with others who you know have received blood and may want to be included.

Thank you to those who have already sent me these things. And no, I am not some wonderful saint for doing this – but thanks for thinking so. I am doing this for several reasons. 1) January is a low donor month and supplies get low. 2) I owe this cause my heart and soul because donors and the doctors and other staff at the Blood Center of Wisconsin gave my boys life for many years and 3) Isn’t this a better project for me than curling up on the sofa, crying, possibly watching a lifetime movie and then wandering the house crying again? Yes – I think this is a better use of my time! Don’t worry – I’ll be back to that posture soon enough. Grief is not that short lived – it is forever. I simply need to let the grief and pain propel me forward on this day for this cause….I cannot say what grief will do tomorrow so hurry up and send those pictures!

THANKS FOR ANY HELP YOU CAN GIVE!
Love,
Anne

P.S. If you missed Zach's ART SHOW then scroll up above this journal entry to the screen where he is pointing to a sculpture, of which I have never been able to determine. But he sure loved it!

---

Wednesday, January 9, 2008 6:18 PM CST

Sorry, but I had to move the "artist on display" picture montage just above what you are reading right now. It was messing up the color of the words in the journal - making them black, which does not show up so well on blue. I am not computer literate enough to know why or how to fix it. So, if you did not see Zach's art show scroll up a little and you will see it. Or scroll down to links and there is a link to our share page of all the picture montages. It can be found there too.

I work with a friend named Brad, who kept me supplied with Mountain Dew and cookies for lunch many a day while in the ICU. But that's really beside the point. Today he showed me a Valentine card that Zach gave him last year. Zach was inpatient - it was the day before he got his pacemaker. Zach, of course, had Star Wars valentines. The funny thing that we laughed about was what he wrote on it. He wrote:
To Brad
or B-RAD (as in "be radical")

Only Zach would see that very cool version of Brad's name. I think I'll call him Be-Rad from now on.


Sunday, January 6, 2008 10:48 PM CST
Thank you for the well wishes, calls, emails, messages, etc. Work was…ok. The first elevator ride was exactly what I described in the last post. Fortunately, I did not run into anyone else that I know who pretended I was not there. I did ok for some hours and then I was just done. There is not a slow awareness of the need to be done… simply, there are these moments when I am doing seemingly well, functioning like a normal human being, doing something productive and then in an instant I freeze and cannot bring myself back to the land of the living. Sometimes it only lasts 5 minutes and sometimes it is hours.

I think I remember this after Sam – when one day at a time seems like a pretty outlandish goal. One hour at a time seem fairly lofty as well. One 10-minute block seems about right. Take Saturday…I woke up early and started going through some old emails. I did that for about an hour and was thinking that it was going to be okay today – I was actually going to get things done. I got in the shower…and I dissolved. I collected myself and went down stairs and started looking at a bunch of old papers. I was okay, calm, ready to attack my papers… until I got to the ones that I distinctly remember last working on while Zach was in surgery. And that was the end of that task. Maybe later this week I will try again.

Friday, two of Zach’s nurses came over to visit, which was very good for me. We had planned to go get coffee or something but we were all too lazy to get off the couch. So we just talked. It is good to have a break in the silence and to have that break with people who have so many memories of Zach and Sam.

Saturday, Adam, who is Zach’s “big brother” visited with his new dog, Ernie. (And his fiancé, Elizabeth’s dog but she was not with him). Ernie is very cute. I promised Zach I would get him a dog when he got out of the ICU. It was one of two things I promised him. But no one in this house has seemed too pleased at that thought. Ernie was pretty cute though and the girls liked him. Abby said if we get a dog like him (little and cute) she would like that. So maybe in a few months when I feel a little stronger and more responsible we will do that.

Tomorrow Zach’s art goes on display at Butler Middle School. I have everything packed up and ready to go….I am sure it is way too much to fit into their case. However, this way I will have plenty to choose from once I can see what the set up is. Zach would be so proud. I keep thinking about how he would smile from ear to ear and tell everyone about it. I am so thankful he made so many things that I can look at and know his hand touched, his mind created and his heart and energy went into.

Brittany is going back to Minneapolis on Tuesday morning. I know this is normal and the natural order of things. But I will miss her. We all will. I don’t know if I said she gave me the best New Years Eve present. She had friends over. Yes, really, I may be the only mother on earth who was lying in bed at 2 am, listening to these kids laughing and talking quite loudly, and thinking how wonderful it all was.

I read a good book last week. I am sure many have heard of it and I was often told to read it after Sam passed away. I did not but wish I had listened and read it back then. It is called When Bad Things Happen to Good People, by Rabbi Harold Kushner. I like it because in the end he says that it is folly to ask that question. There will never be an answer. It cannot be “God’s plan” because then was it God’s plan for 6 million Jews to die in concentration camps during the Holocaust? I would hope not. And was it God’s plan for so many to die from the Tsunami a few years ago? If so then whose side was God on? And who would want that God?

The fact is bad things happen and God did not cause them to happen. The question we need to ask is not why did this happen but now that it did, what am I going to do? Not what meaning is there in a tragedy but what meaning will we ascribe to it? I don’t know that I agree with all of his theology but when taken as one message, it was one of the only things that has ever made sense to me. There is not sense in this – none. There is not some plan that God has just decided not to tell me about, God did not need my son more than I did and this is not because Zach or I did something wrong or some reward for doing something right or any of those other things I have heard. (I appreciate that this may not be something every one agrees with but please respect this is my belief and we can agree to disagree.)

So the book resonated with me….now if I could just fill my mind enough with it so that I stopped having panic attacks about every “could have”, “would have”, “should have”, “did we?”, “why did we?”, “why didn’t we?”, I would be doing well. For the moment I am still struggling intensely with all of those things even though I know the Rabbi is right – it is folly.

Below is an excerpt from Zach’s “prayer card. I’m not sure why I call it a prayer card since there is not really a prayer on it. Basically it has some pictures and some poems. This is something I wrote about him living life fully. No matter what he did, no matter what he felt, he did it fully
______
ZACHARY RYAN
The One and Only…

Laughing your joy
Crying your tears
Climbing your valleys
Hoping through fears

Believing in yourself
Celebrating your puzzles
Soaring your dreams
Shining your life

You sketched a life lived
Your brilliant soul is our beacon
Shining forevermore

---

Wednesday, January 2, 2008 10:24 PM CST

Tomorrow – Thursday - I am going to work. I think it may be too soon but I don’t know what else to do but try.

“I am thinking how hard it must be to come back to work here – I imagine it is so difficult….” one of the doctors said to me a few weeks ago. I told him I do not have to imagine it – I have a pretty good idea of what it will be like. After Sam passed away, I distinctly remember how quiet I could make an elevator…all of a sudden people I knew were looking down, looking at their papers, searching for things in their purses... as if they had not noticed I got on the elevator. I can still see it as if it happened yesterday.

There were people who did not even acknowledge that Sam had died. Not even “I’m sorry.” Staff - who had participated in Sam’s care- not as primary caregivers– but had cared for him here and there nonetheless, never looked at me or talked to me for months and when they did they never said “I am sorry Sam died.” I know it is because some of them don’t know the right thing to say. They don’t know that there is not a right thing to say that will make this better. And for some it is guilt because they did not send a card or come to his service or whatever. They do not understand it is never too late to say I am sorry and it is okay if they never send a card. I dread the heart break of that again.

I remember walking down the skywalk and people who would have greeted me in the past stared at me or looked down or to the side. They did not say hello. I remember crumbling in my office one day. “Why would people do that?” I asked a different doctor friend. He explained to me how uncomfortable people are with death. “Walk outside” he told me. And that was what I did for a long time – even when it rained. But unlike 2005 when I could avoid the long halls, there is no way to avoid them now. There is no front door to slip out, walking the rest of the way outside. The front door is gone; the side doors are off limits too due to construction. The reality of that hit me the morning after Zach died, when I was leaving the hospital without my son. The only choice I had was to walk through an indoor skywalk, past people arriving for day shift, past parents arriving for day surgery…one would have to have a very limited imagination to not know what had just happened. I felt sorry for the parents, the dayshift and me. Zach’s nurses held me up – but I can hardly have someone walk me everywhere I go for the next month.

I am scared because many people WILL say “I am sorry” and then I will cry. Will they think they made me cry? Will they think that they should not have mentioned Zach’s name for that made me remember him? Will they never talk of him to me again? Or will they know that I think of nothing but Zach and Sam – they no more made me remember than they caused the sun to rise that morning. Their kindness will not be what makes me cry. I will cry because I am sad…and because I am thankful someone said the name Zachary.

I am scared because there is not one place in that hospital that is free of Zach and Sam memories. It’s not just the patient care areas. The administrative offices are where Peter and I met with others when we were advocating a systems change, the auditorium is where I did my first public speaking – about my boys – many years ago, the stairwells are where, when no other quiet space could be found on a few occasions, I had life and death talks with their doctor, the library is where I went to pick up my researched and ordered articles, the corporate center is where I took Zach many a time when we were doing combo patient care/work trips to the hospital. My own office – where Zach loved to visit and where he had his teen advisory meetings- is not even safe. Everywhere I go, Zach and Sam are there.

I never realized how Zach was the glue that held me together when I had to do all of these firsts after Sam. The first time I had to step foot into the hospital - Zach was with me - for an admission 10 days after Sam died. We walked in and there was one bed – not two as there had been for years. I cried all day while he shined. Without knowing it, he took care of me. He talked, smiled and laughed. He welcomed people into the room when I would have shut the door. That admission and many following were difficult. I cried a lot. People did not know what to say or how to act so he showed us all.
He showed us it was okay to still laugh and smile but never, never to stop talking about Sam and how much he changed our lives. He showed us how to relate – how to BE – after Sam.

And the first time I went to work Zach went with me. I took him into my office and we picked up mail and left. But before we left he chatted with the people I worked with. He said hello to the volunteers in the skywalk and he begged to go to the pharmacy to buy a snack and he talked to everyone there too. The second time I took him to physical therapy first – he walked down those halls with me and I did not feel alone. We were so worried how he would handle therapy without Sam…without all their routines and jokes and games but he showed us once again how to relate to each other and to him without Sam there. He missed Sam tremendously – more than I think most people appreciated. But he chose to honor Sam’s life by living his. He truly was my strength and my teacher. I just hope I can remember what he taught me - by example - about grief, keeping his brother alive and forging new but many times stronger relationships with the people we, (Sam, Zach and me) were closest to. I hope I have can have a tenth of his courage and resilience.

---

Tuesday, January 1, 2008 0:19 AM CST

One would think that I am happy to see 2007 go – for 2007 is the year that my oldest son passed away. It was the year that we wondered if Zach would live through the spring. It was the year that “possible malignancy” referred to my son – not some other child and the year I had to consider a life threatening surgery that might or might not be helpful. The alternative was to watch his bones further deteriorate, his spine collapse until it compressed his lungs, and cancer spread if the mass turned out to be malignant. There was never a good choice, though I never really believed that he would actually die because of that surgery. But I did struggle with the options. The agonizing, final decision and consequences are how I spent most of my time in 2007. Thinking about those things will always hurt.

But it is not quite that black and white. 2007 and 2005 hold both the best and the worst times of my life. Those lines, of course, are familiar to anyone who has read Dickens’ A Tale of Two Cities. The first sentences of that book strongly resound with me in thinking about 2007 and 2005.

"It was the best of times, it was the worst of times, it was the age of wisdom, it was the age of foolishness, it was the epoch of belief, it was the epoch of incredulity, it was the season of Light, it was the season of Darkness, it was the spring of hope, it was the winter of despair, we had everything before us, we had nothing before us, we were all going direct to heaven, we were all doing direct the other way."

2007 and 2005 are the years I lost the physical presence of my little sons and that makes both years the worst of times. And yet, both years are “the best of times” - wonderful years - because 2005 held two months and 2 days with Sammy here and 2007 held nearly eleven months with Zachary.

How foolish I was on 1-1-05 and 1-1-07. I still feel blindsided. Yes, I was wise enough to understand that disease progression was unlikely to stop its steady march forward, and I was wise enough to cognate that if that march continued, my children were unlikely to live to adulthood. But imminent death? Death around the corner? I was foolish enough to not see that coming, so unsuspecting was I. They were both just days like every other January 1st had been in the past – days that marked the beginning of a new year.

In 2005 I believed that MY children would not die from mitochondrial disease. After Sam did, in fact, die I was not just doubtful, but incredulous - surely two of my children would not see that same fate. In 2005 I believed that if I read enough, paid enough attention to detail, advocated and most of all loved enough that my beautiful children would remain with me. With incredulity I found that not to be true in March 2005 and yet I still firmly believed it in 2007.

There were times I comprehended what was happening and moments when I was ignorant, even when light illuminated the darkness. I failed to realize Sam was going to die even when we entered the emergency room, even when the doctor finally consented to call Sam’s doctor – out of desperation I know now. I failed to recognize that Zach would not come home from the ICU with me. I hoped after Sam’s death, I hoped throughout Zach’s ICU admission and I hoped many days in between - despite the enlightenment that Sam’s death brought to me. I truly despaired of living through the day on March 3, 2005, much less a week, a month or a year. I feel despondent now and the sunny days are filled with darkness, while the dark nights are filled with unwanted illumination brought forth through hindsight.

On New Years Day 2005 the world was before us. I had my four children with me…and then suddenly on March 3, 2005, I did not. It felt as if nothing was before us except despair and anguish. But I hoped I could find hope for my children. And so I seesawed between those two until hope won out. Now I find myself back at a place I do not wish to be. I wish to go back to 2007. I would re-live the entire year – good times and bad - just to have the chance to experience it again. I would not even ask God to change anything. But I can’t do that, of course. God obviously does not make deals with me. I cannot stop 2008 from coming. But on the threshold of 2008, I want to remember the miracles of 2007.

The countless times that Zach’s kidneys returned to normal function after it seemed like “this time” they would never be okay again.

Zach lived on February 11, 2007. Zach’s heart rate dropped so very low that it appeared he was walking the exact steps of Sam on the night he died. But it was different… his heart rate came up and he got a pacemaker. He did not die. He lived many more months.

The many times that Zach stopped bleeding after weeks of never ending bleeding.

Every time Zach needed blood, platelets and cryo – it was there. There was never a time he went without. Although needing a lot of blood products is nothing new for my boys, Zach needed red cells every day and many times he needed them around the clock while in the ICU. There were always donors. Always.

The day I realized that Zach had walked independently and safely for days. I can still recall the night last spring when I heard his backpack wheels – Zach getting up and walking by himself! And then he even walked around our cul de sac many times this summer. He got stronger -something that was not supposed to be possible.

Zach went to Brad’s pool party. Without any help from me, he “wheeled” to the party with Abby and stayed there the entire time. He had a wonderful time.

The Marigolds planted around Sam’s tree at school by his kindergarten teacher, thrived all summer, despite the terrible soil and lack of care they received.

My Papa, placed on hospice in June, expected to only live a few weeks kept living…and living…and living. He is driving himself to Karaoke now.

We went to San Diego for10 days in August. Zach’s medical status was, inexplicably, more stable than it had been in a year. He went swimming and shopping and walked on the beach. He got to go to Lego Land! He was so happy and one of these days I will post the pictures to prove that.

Zach got to go to high school. My son went to high school!

All the right people were with Zach during his first heart arrest on October 4th. His (and Sam’s) best nurses, Brenda and Rob (ICU fellows) and so many others were there and Zach lived for almost 2 more months. Not long enough by any measure but still… 2 more months. As it turned out Rob and Amanda, one of Zach’s primary nurses, were with Zach on Nov. 23rd when he suffered his next to last heart arrest. Rob saved his life and they both sat/stood by his bed for hours through the night. And on Nov. 27th when Zach took his last breath and his heart stopped beating – it was Brenda, who I have known since she was an intern, and Kris, Zach and Sam’s longest primary nurse who were with him – and me. And Erin, and Hope and Amanda and Sarah and my sister....they were all there too and that was a gift

An anesthesiologist was in the room when Zach could not breathe due to blood clots all over his airway during the 1st attempt to remove his breathing tube. There was not a doubt in anyone’s mind that without Dr. B Zach would have died that day (Oct 19th).

The first day in the ICU brain death was suspected. Zach’s doctor and I did not believe it. But many did believe because his pupils were fixed and dilated. But then he woke up, he breathed and coughed on his own, he opened his eyes and could blink in response to me, he enjoyed his movies and being read to and he tried to talk to me a few times after he got rid of the breathing tube. He responded to me a few times on Sunday and Monday before he passed away. No matter what had happened to his body, Zach’s mind, heart and soul – the essence of Zachary - was always alive and strong.

Because of the many unexpected gifts listed above - 2007 can never be the worst of times.


The Death of the Old Year
Alfred Lord Tennyson


Full knee-deep lies the winter snow,
And the winter winds are wearily sighing:
Toll ye the church bell sad and slow,
And tread softly and speak low,
For the old year lies a-dying.

Old year you must not die;
You came to us so readily,
You lived with us so steadily,
Old year you shall not die.

He lieth still: he doth not move:
He will not see the dawn of day.
He hath no other life above.
He gave me a friend and a true truelove
And the New-year will take 'em away.

Old year you must not go;
So long you have been with us,
Such joy as you have seen with us,
Old year, you shall not go.

He froth'd his bumpers to the brim;
A jollier year we shall not see.
But tho' his eyes are waxing dim,
And tho' his foes speak ill of him,
He was a friend to me.

Old year, you shall not die;
We did so laugh and cry with you,
I've half a mind to die with you,
Old year, if you must die.

He was full of joke and jest,
But all his merry quips are o'er.
To see him die across the waste
His son and heir doth ride post-haste,
But he'll be dead before.

Every one for his own.
The night is starry and cold, my friend,
And the New-year blithe and bold, my friend,
Comes up to take his own.

How hard he breathes! over the snow
I heard just now the crowing cock.
The shadows flicker to and fro:
The cricket chirps: the light burns low:

'Tis nearly twelve o'clock.
Shake hands, before you die.
Old year, we'll dearly rue for you:
What is it we can do for you?
Speak out before you die.

His face is growing sharp and thin.
Alack! our friend is gone,
Close up his eyes: tie up his chin:

Step from the corpse, and let him in
That standeth there alone,
And waiteth at the door.
There's a new foot on the floor, my friend,
And a new face at the door, my friend,
A new face at the door

---

Click here to go back to the main page.

Click here to view older journal entries.