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ZACH & SAM 
HAPPY BIRTHDAY
SAMUEL PATRICK!!!
YOU ARE SO VERY LOVED!
SAMUEL PATRICK 05-09-97 - 03-03-05
AND
ZACHARY RYAN 04-20-92 - 11-27-07
"All of us have had the experience of a sudden joy that came when nothing in the world forewarned us of its coming; a joy so thrilling that if it was born of misery - we remembered even the misery with tenderness."¨
-----From Wind and Stars - Antoine De Saint Exupery -----
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 (PALS Course Book)
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The Value of Laughter
Laughing is an action that helps people express happiness. It is fun and lets all mixed feelings come out in a simple sound. It is scientifically proven to improve health by strengthening the immune system. Besides the fact that it is healthy, it is relaxing and very enjoyable. It keeps life bouncy and light. It is said that people who laugh live longer. I am a strong believer in this quote, from seeing my little brother Sam live until almost eight years despite his life threatening disease.
He laughed constantly every day, and I know that this had a lot to do with the reason he lived as long as he did. This was literally the best medicine he could ever receive. As an honor to Sammy, make laughter one of your values, for it was his gift and his legacy to all of us.
~by Abby Juhlmann
in memory of Sam 5/9/97 - 3/3/05
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SAM and ZACH's STORY
Sam was seven years old, nine months, and twenty-one days old when he died suddenly on March 3, 2005 from Mitochondrial Disease. He was a child with big brown eyes, who was tiny for his age, though his presence was enormous. He loved to tell jokes - none of which were funny. Yet to hear his uninhibited laughter at his own jokes was to step into the sunshine from the shadow, and so we asked him to tell the jokes again and again.
At night Sam used to ask me, Sam's mom, to climb into bed with him and about thirty stuffed dogs. I would lay beside my little boy while he told me he wanted to be the Yellow Power Ranger for Halloween and how he couldn't wait to go to school so that he could have recess, "just like the other kids," and that when he grew up he would be Buzz Light Year or maybe an ambulance. "You mean an ambulance driver?" I once made the mistake of asking. "No," he said with disgust. "Don't you know about an ambulance? It goes really speedy and it helps people get better. That's what I want to be."
Zachary and Sam ARE "best brothers." Sam adored Zachary, wanted to be just like him. And no wonder. Zachary was so good, so patient with his brother. Two-and-a-half years after Sam passed away, Zach died after a long and valiant battle in the ICU. He was fifteen AND A HALF - that half mattered to Zach. He'd been looking forward to turning 15-and- 1/2 because that was the age he could get his driver's permit. Although he likely would not have been able to drive his persistence in telling his doctor and I that discussing it was not an option demonstrates how hopeful and confident Zach was in the future - HIS future.
The cause of death on Zach's death certificate is mitochondrial disease but he never allowed himself to be defined by those two words. Rather, he wrote his own book. He was a creative, computer-savy boy who loved jokes, card tricks and beating most of his family at chess. Outside Zach did wheelies in his electronic wheelchair and caught worms to scare his sisters with. He looked forward to April Fool's day: peanut butter on our door knobs, fake spiders in our dinner, switched cereal in the boxes. Zach was quite an artist and his masterpieces continue to speak his personality in a way words cannot. A few months before he passed away he started high school. Personal finance was his most favorite class. He had great plans to make enormous sums of money so that he could take over as CEO at Children's Hospital.
I was with Zach and Sam when they were born and I held their hands when they died. In the space between those two moments, I watched mitochondrial disease make its relentless march -invading their bodies bit by bit. By the time I watched each boy take his last breath it should not have been a surprise to me for we often marveled at how they could still be alive when clearly the disease had made its claim in insurmountable ways. And yet I was shocked when each of my sons died. Zach and Sam were so strong - each such a light force -that aside from fleeting moments, it seemed unfathomable that there'd ever be an eclipse of Zach's light, or an extinguishing of Sam's.
Even now I remain unable to reconcile the fate of their bodies with the intensity of their souls. Zach and Sam were strong, full of hope, funny, full of joy - simply happy to be alive. They had a magnetism, which remains indescribable ¡V that drew people to them. Their community - teachers, health care providers, family, friends and our local community - gave so much energy to the boys. That allowed Zach and Sam to be who they were, which inspired their community to work together and invest more energy and so on and so forth. The reciprocal give and take of energy powered miracles every day. It was an amazing thing to witness.
Their lives were far too short, and I am far too sad without them. My world has been tipped, tossed and shattered and I am unsure anymore which way it spins. The only thing I know for certain is that death cannot over power love. I think the power of love - the love Zach and Sam gave and the love they received -is all around us. That can never be eclipsed.
Mitochondrial Disease is, at heart, a disease of energy deficiency. The mitochondria, tiny organelles living inside our cells, are responsible for converting food and oxygen into energy. When the cells can't get enough energy, due to malfunctioning mitochondria, the cells begin to die, and the organs in which those cells live - the liver and kidneys and eyes and digestive system; the brain, the heart - begin to fail. Miotchondrial disease is no single disease. It can affect any organ, appear as any disease, it is progressive, and it has no cure.
Not yet.
THERE IS A LAND OF THE LIVING
AND A LAND OF THE DEAD
AND THE BRIDGE IS LOVE
THE ONLY SURVIVAL
THE ONLY TRUE MEANING
~ Thornton Wilder, The Bridge of San Luis Rey~
*** Thank you for your caring and compassion and for all of the kind notes in the guestbook.
~Anne
Please take a few minutes to watch this montage about the importance of blood donation.
Journal
Monday, May 09, 2011 10:56 PM CDT Happy Birthday Sam
“I’m Mama’s Baby!”
Today I was laughing, thinking about you being Mama’s Baby.
And yes, you can tell Zach that Mama says you can still be my baby.
“I’m Mama’s Baby!” You loved to say that and you said it with quite a bit of pride from the time you could talk. When you were little the Zach accepted your statement. You were three or four when this started – not really a baby. Zach is very literal and I am a bit surprised he let it fly for so long. He did though I am sure he would have preferred you be “Mama’s fierce warrior” or something that highlighted you as a larger than life super hero (notwithstanding the 20 kg that you were stuck at for the second half of your life.)
Then you turned six. I remember your sixth birthday as your Buzz Light Year Birthday. You wore an orange Buzz Light Year Hawaiian shirt and light up Buzz sandals. You even had Buzz Light Year underwear. We got you a blue Buzz lounge chair -as if you’d ever sit still long enough to lounge. What was I thinking? Your other presents all featured Buzz and you got too many, of course.
That morning I picked you up in your room in preparation for carrying you down our stairs. We didn’t have the stair lift yet. I’m trying to remember if you could walk down stairs. Why was I carrying you? I am certain you were perfectly capable of walking down the stairs though they are long and I think it would have been a slow and arduous process. I can’t imagine trusting you to ever make it down the stairs in one piece that morning for you were completely preoccupied with two things: your light up sandals and telling Zach that you had light up sandals and he (Zach) didn’t.
Whatever the reason, I scooped you up to carry you downstairs. Zach was right behind us. He was staying home from school that day to help you bake your cake. I can see and hear the scene as if it occurred five minutes ago. We’re in the hallway. I am about to step down on that first step when Zach, unceremoniously, broke the news to you. He announced –or rather pronounced - a phrase that I would hear repeatedly for the next two years: “Sam -you are six. You are not a baby. You need to stop saying that.”
Sam, my little drama man - I don’t know if you drew in your breath but what came out of your mouth was an incredibly indignant reply: “Zach I can too be Mama’s baby! Right Mama! I can be your baby!”
“Yes, you can always be my baby Sam,” I responded.
“Tell Zach” you sniffled as you snuggled into me, as of you were wounded.
I complied: “Zach. Sam can be my baby if he wants to be.”
You hugged me tighter.
Oh, the injustice of Zach saying you could not be Mama’s Baby.
Still aghast I heard you say, “Hear that Zach. Mama says I CAN be her baby!”
That scene was repeated a hundred times in the next two years. I admit I thought it was pretty cute. I still do. Sam, you could have been my baby forever if you had wanted to be.
It was cute for obvious reasons. A heart would have to be ice to not be taken in by your charm, to not laugh at your antics or allow oneself to be wrapped around your finger just a little bit. That you thought you were pulling the wool over our eyes only made you that much more endearing. Yes, it’s true Sam. The wool was not exactly over our eyes. But that’s okay. You “never gave up” and absolutely gave it your best. And the most wonderful thing is that it’s all part of an endless source of laughter. To make so many people laugh seems like one of the most worthwhile things one can do in life. You did it in a short seven years.
I loved how you asked Mrs. Brooks if she was hot every single day you went to school. Mrs. Brooks taught first grade for many years. She is a seasoned and experienced teacher. So she knew your routine and she knew you were perhaps a little bored because all the other kids had to have turns and it was so long to go without her attention focused on you. She knew but she loved you so much that she answered you every single time as if you were asking for the first time. And when you were gone she missed you Sam – she missed someone interrupting her to ask her if she was hot.
And Grandma…well Grandma is a pretty smart lady too. You used to tell me that you had to watch the Rudolph movie because it was Grandma’s favorite or we needed to go get French fries because they were grandma’s favorite. What can I say except, “good one!” just as you would say. Grandma predictably backed you up 150 percent. She was not ignorant of your ploy. She just loved you so much that if you said Rudolph was her favorite because you really wanted to watch it then she had your back. Not to worry – Rudolph would become her favorite and remain her favorite. She watched your “current” favorite move over and over with you because she loved being with you.
The night before you died, you convinced me to read a seventh book before bed. You implored me saying that you were cold and would turn into an ice cube if we didn’t snuggle and read. I didn’t really follow your logic on that one Sam but I read you that book anyway, didn’t I? I read it because you looked at me with your huge brown eyes, batted those cheek length lashes and flashed your enormous smile at just the right moment. That smile was amazing and could light the world. It was powerful Sam and I think you were born knowing the exact right moment to use it. Then you put your sweet little hands together, stared right in my eyes and said “Pweeese. I’ll do anything for you and you are the pwettiest Mama ever and I just need to stay up a little longer (“a wittle wonger.”) I wish I had read you 8 or 10 books. I wish I had read to you all night.
I’m Mama’s Baby.”
I admit the wool was over my eyes when it comes to these words. I chalked it up to cute and didn’t think a whole lot about it. I should have been perplexed. Talk about “a good one!” I have thought about this a lot lately Little Baby Sam. And I have one thing to say to you: “Nice try French fry!” I may be late to the party but the wool is off. It’s okay though…you can still be my baby forever and ever.
I just thought you would like to know something. Mama knows you were actually a big kid like Brittany, Abby and Zach. Mama knows you weren’t a baby and you didn’t usually act like a baby. You didn’t cling to me. You weren’t shy and you certainly didn’t lack an independent soul. If your body had complied, you would have run away 14 times by the time you were six, stormed out the door twice as many times, and stolen your sister’s car keys and driven the car at least once before the age of seven.
I know you’re laughing right now because you know you would have done that. I bet you are proud too for playing such a good joke on Mama for so long. It was a good joke but I also know you didn’t reallywant to be a baby. You wanted to go to school and stay up late and watch the shows Zach watched. You wanted a birthday party and drums. You really didn’t want to be a baby -not really.
Today is your birthday. You will never be older because birthdays are what we use to count the number of years a person lives on earth. You will never get your drums and never drive your own car. But Sam -when you died – when you were 7 yrs old and 9 months and 21 days you were not a baby. You were Mama’s big boy. Only big kids get to go to first grade and class trips, have friends over and dance at sock hops, ride alone in their sister’s car and get their very own library card. You didn’t get to be a big kid long enough but you were a big kid for a while. Here’s a mystery: do you know you can be a Mama’s big kid and Mama’s baby all at the same time?
You have made mama laugh more than you can imagine. I know you just wanted to be Mama’s Baby for the perks. You knew exactly how to get what you wanted from Mama and telling me you were still my baby did the job. They say mother’s have eyes in the back of their heads. Here’s another secret. They don’t. But I do know the exact look you gave Zach and the girls as you snuggled closer to me, professing yourself my baby, while looking over my shoulder at them.
A speech therapist evaluated you when you were close to three and not talking. She said she was unsure when you’d talk but one thing was certain -she had never met a child who could use his face to express himself so well. She wasn’t kidding. Mr. Mama’s Baby I know what your face expressed when you told Zach and the girls you were my baby.
Your eyes would have been jubilant. Ha! Ha! Your face would have been so proud. “I’m Mama’s Baby and there aint nothing you can do about it guys. Bet you wish you were as smart because being Mama’s Baby is very useful. Mama’s Baby can whimper and stay up way past his bedtime. Mama’s Baby can remind Mama he is her baby and get to watch whatever movie he wants. Mama’s Baby can do anything. Mama’s baby can probably get you in trouble. “ The triumph on your face would have been something!
You were something Sam! You were something –you are something -you are someone – so incredibly special that even now you make people laugh. You make people happy in just talking about you. That’s an amazing thing – that the best “good one” that I know of and you make it happen every day.
I love you so much Sam
I love you to the moon and back
Down to the ocean and around the world
Up the mountains and deep into the core of the Earth,
I love you 1000 cc, one million cc – a gazillion billion cc
I love you more than dilaudid, valium, phaenobarbital
and even Benadryl pushed really fast
I love you more than you can imagine
I loved you before you were born
I loved you the minute I heard and saw you
When I held you I loved you even more
I loved you being my baby
And I loved you every year when you got older
Even when you got to be a big kid I LOVED YOU
And now, when I cant see you
I still love you
I will always love you
Happy Birthday to Mama’s Baby - my big kid Sam
And don’t worry. I’ll pretend I don’t know what you’re up to and play along! It will b e our secret because it’s “a good one!” A really good one that makes me laugh
Happy Birthday Sam
I am so glad you were born and mine
Love,
Mama
Read Journal History
Hospital Information: Children's Hospital of Wisconsin
9000 W. Wisconsin Avenue
Milwaukee, WI 53201-1997
Links: http://www.bloodcenter.com Blood Center of Wisconsin - The perpetual generosity of many annonymous blood donors gave life to Zach and Sam
http://www.freewebs.com/zachnsam Be Energy! Give Blood
http://www.wisconsin.wish.org Make-A-Wish Foundation of Wisconsin
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