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SAM and ZACHARY
SAMUEL PATRICK 05-09-97 - 03-03-05
AND
ZACHARY RYAN 04-20-92 - 11-27-07
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 were ”best brothers.” Sam adored Zachary, wanted to be just like him. And no wonder. Zachary was so good, so patient with his brother. Zachary is a teenager now (14), a creative, computer-savy boy who loves jokes and card tricks and beating most of his family at chess.
Outside Zach does wheelies in his electronic wheelchair and catches worms to scare his sisters with. He looks forward to April Fool’s day – peanut butter on our door knobs, fake spiders in our dinner, switched cereal in the boxes. I am told and I have seen that this disease is progressive for Zachary, but its pretty hard to reconcile progressive with a kid that is so alive.
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 these cells live—the liver and kidneys and eyes and digestive system: the brain, the heart—begin to fail. Miotchondrial disease is no single disease, in other words. 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 giving blood and raising awareness in our communities.
Journal
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
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.umdf.org United Mitochondrial Disease Foundation
http://www.onetruemedia.com/my_shared?z=7e6d2b761f9cb7944acc0&utm_source=otm&utm_medium=text_url Share Page for Picture Montages
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