FORCING THE WHY

Two years ago last month I wrote the first of two columns about my friend, Becky Conrad of Burnsville. At the time, Becky had just been diagnosed with Lymphoma of the Brain, a rare form of cancer, and the diagnosis hit her hard. She’d already been through so much.

As a child, Becky endured many hospital stays for a blood and kidney disorder, and then at age 9, was diagnosed with retinitis pigmentosa, a deterioration of the retinas that left her totally blind before she was out of her teens. But Becky was determined to live a normal life, so she married her childhood sweetheart and a year later, their son Joshua was born.

Even as a newborn, Joshua was sweaty nearly all of the time. Becky and her husband knew something was wrong, but for nearly a year, their concerns were dismissed as doctors believed it was nothing more than the standard new parent fears, or that the blind mother was to blame for her son’s failure to thrive.

Fortunately, though, a diagnosis was reached before it was too late. Joshua was found to have Type 1 Glycogen Storage Disease, a hard-to-control condition so rare that few physicians-then or now-understand how to best treat it.

Basically, those who have Type 1 Glycogen Storage Disease (GSD1) can store the glucose their body needs in their liver, but they can’t release what they’ve stored. It’s kind of like having loads of money in the bank, except you can’t get it out and spend it no matter how badly you need it. There’s a long list of potential complications from GSD1, involving everything from liver and kidney failure to high blood pressure to tumors, and diet must be closely monitored at all times.

What I’ve always found most bizarre about GSD1, however, is that as part of his treatment, Josh had to consume cornstarch every four to five hours, around the clock, to keep his levels in check. Since he was such a sound sleeper, Becky would get up at night to make certain he took it. For 19 years, she closely monitored his diet and cornstarch consumption, and it was when she was taking his morning dose to him that she found he’d died in his sleep.

When she called a few hours later to tell me what happened, I left work right away and drove to Burnsville. It’s been a long time since I’ve experienced a day that felt so surreal, when I’ve felt so helpless and useless and completely empty of words. And it’s been a long time since I’ve felt so angry over anything quite like I’m feeling over the unfairness that Becky’s been dealt.

Her blindness should’ve been enough, but then there was Josh’s disease and Becky’s cancer and the awful car wreck they had while she was still going through chemo. There was the winter storm that knocked out the power in their greenhouse and froze all their plants. There was her husband’s emergency bypass surgery last March, followed by his employer shutting their doors before he’d recovered enough to go back to work.

And now Josh. Their gentle giant. Their talented musician. Their only child.

I don’t know that I’ve ever attended a service as touching as his, where one red-eyed friend and relative after another stepped to the front to talk about what Josh meant to them. After all they’ve been through, the date for his service seems ironic–Friday the 13th.

While driving home after watching my friend say goodbye to her son, I thought about something I’d written in response to a conversation Becky and I had shortly after her cancer diagnosis. She’d simply asked why, and I knew what she meant. Why her? Why then? Why that?

I remember how ineffective I felt with my answer, “Sometimes there isn’t a why.”

I felt even more that way now. After a lifetime of fighting to fit, Josh had finally found the places where he could shine. Put a guitar in his hands, and he could do magic. In electrical school, he was a whiz. It was as though he was taken right when he was just reaching his stride, and I was having trouble making sense of something like that.

Oddly, it was Becky who put things into perspective, reminding me of something I’d pushed out of my head. She reminded me of a time when I had told her how, while I hadn’t stopped praying for a miracle to cure my baby of acute spinal muscular atrophy, I had started asking if she wouldn’t be cured, that she not have to suffer. And that prayer was answered. Like Becky’s son, Camille died in her sleep.

Becky told me that if Josh had lived longer, his condition would’ve begun taking even more of a toll on his organs. It was an unavoidable eventuality of the disease. Although losing him so suddenly and without warning had been hard, she knew her child hadn’t suffered. He’d been spared.

That she could find the only element of possible good in all this has me in awe. I’m proud of my friend.

The Glycogen Storage Disease Assoc. has started a memorial fund in Joshua’s name. For more information or to make a contribution, contact Glycogen Storage Disease Program, Univ. of Florida, Box 100296. Gainesville, FL 32610.
http://www.gsd.peds.ufl.edu/index.htm
(Visit Memorial Fund link in site menu for more info.)

by Karin Fuller, columnist with the Charleston Gazette.
Used with permission.


On June 1st, 2009, Karin Fuller wrote a poignant article on the pain and sorrow of loss.
You may read it on her blog site - "A Rare Medium"
And, On June 18th, 2009 - Revisiting Rare Mediums - "Rosemary's Gift"

I am deeply saddened to say our community has lost another youngster.

Joshua Adam Conrad left us to join the many angels who have gone before him on February 9th. Only 19 years old, he was on his way to a promising career as an electrician. He was a musician and loved being outdoors. Joshua’s parents are Bobby and Rebecca Conrad.

Joshua had a disease called Glycogen Storage Disease and the Glycogen Storage Disease Association has started a memorial fund in his name. For more information or to make a contribution, call (352) 265-0855 or contact Glycogen Storage Disease Program, c/o University of Florida, Box 100296. Gainesville, FL 32610.
(Visit Memorial Fund link in site menu for more info.)

I didn’t have the honor of knowing Joshua or his family but I do know that our entire community feels the loss of someone so young. Sadly, we have lost someone very dear to us. I know that Heaven’s Angel’s welcomed their newest angel with open arms and he is now playing music with them. Please keep Joshua’s family and friends in your prayers.

by Melinda Frame, Citizens' News
Used with permission.