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SAM and ZACHARY
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
Tuesday, January 6, 2009 9:37 AM CST Thank you to everyone who signed up to donate as well as those who have invited others to attend. We filled more spots yesterday but as of this morning there are still some spots left. If anyone is inclined to take one hour to donate - it is not too late to schedule your appointment. Think about all the ways we waste an hour here or there during a month…why not spend one hour donating blood.
While appointments are best – unscheduled walk ins are absolutely okay too. I assure you we’re not going to turn anyone away as we really need blood. If you do that I would advise not to come until 3:45 or just call and ask what might be a good time.
If you are currently not scheduled here are the choices:
Schedule online until 1 PM central time
Call or text me 262-490-5083 (If I don’t answer call Brittany. Don’t leave a message because I am currently locked out of my voice mail.
Call or text Brittany at 262-352-8835
My mom, Brittany and Abby will be at Ten Chimneys for a good portion of the drive. I will be there the entire time. I am looking forward to it.
I will be cleaning up afterwards and may not get back online tonight due to it being such a long day. I promise to let everyone know our final amount of blood collected in the next day or so.
Thank you once again to everyone who has taken the time to participate -whether as part of the organization and invitation process or as a donor. There are so many kids like Zach & Sam who truly do need the blood, plasma and platelets. There are many adults too. Never doubt you are making an enormous difference. You are!
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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