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SAM and ZACHARY
Fun at therapy with "Cracker Jack" Jackie - Zach & Sam's beloved PT
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, an eclipse of Zach’s light, an extinguishing of Sam’s -it was all unfathomable.
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 – 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 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 blood donation.
Journal
Wednesday, July 1, 2009 11:39 PM CDT Found another treasure while cleaning the house. (Don’t worry -it’s not enough to be a habit. I haven’t changed that much!)
This one inspired laughter as it is so Zach – so very very Zach.
The first part is obviously a plan he had for his sister:
If you can’t read it, the note says “Brittany. Mess with her room without being caught.”
That was written in a little notebook.
You can see it is crossed out, followed by the words “Mission Aborted.”
I’m guessing he was interrupted. No telling what he was going to do to her room.
The next page is this:
“Daddy. Write notes to Daddy until he pays”
Zach did not get upset about too much but one of his constant irritations was that his Dad did not always have cash on hand when it came time to dole out allowances. And sometimes that was a few weeks in a row. Often Zach’s first question when his Dad came home was “Did you get my allowance from the ATM today?” At times he handed his Dad a bill for all the missed allowances –and believe me – he knew exactly how many weeks had been missed.
I was thinking about the time that Zach tape recorded Brittany yelling at him. (She did not know he did that.) She said “shut up” which in Zach’s mind was a bad word. He then proceeded to bring the tape to the hospital and play it for all of his doctors (who also happened to be Brittany’s doctors.), the therapists, nurses, etc.
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Last week Brittany was home for the week. The time went quickly but it was very nice to see her. She is busy working and getting ready for her last year at the U. She’ll graduate with her BS in Biochemistry. She plans to go to nursing school next. (This is the girl who said she did not know what she wanted to be but it definitely would have “absolutely nothing to do with anything medical.”)
Abby is doing well. She turned 16 and is learning how to drive. It seems a little young to me – she just got out of kindergarten last week. Oh wait…that was about 10 years ago. It is amazing how time passes so quickly and how fast children grow up. So far she seems to be enjoying her summer. School was tough this year - a little too much focus on book knowledge in my opinion. She studied till midnight many nights. Hoping that does not happen next year.
4th of July on Saturday
As always so miss Zach and Sam
Here are some pictures from past July 4th holidays.
Aunt Maribeth and Sam chilling out after a parade
Abby, our neighbor Kevin, and Zach waiting for the parade marchers to throw them candy
If you knew Sam you probably recognize that look. It’s the one that comes right before some remark like “I’m bored” or “I’m hot” or “Zach is ignoring me”
Abby and Sam – not looking any more thrilled. Must be taking too long for the parade to get started. In his defense this was the year he was profusely bleeding for something like 10 days and if I remember correctly, July 4th ended up being one of the worst days.
Abby and Sam
Sam. I love this one.
Sammy and I on our deck. I am sure he’s laughing at something funny Uncle Sean said
Younger years for sure! Abby, Zach and I in the bike parade. Looks like they ditched their big wheels.
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.umdf.org United Mitochondrial Disease Foundation
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