“And she tried to fancy what the flame of a candle looks like after the candle is blown out, for she could not remember ever having seen such a thing.”
Lewis Carroll Alice’s Adventures in Wonderland
I process things through writing and when Sam was born I also found that writing a blog allowed me to share all the news and developments about Sam with multiple friends and family members at once. Sam’s birth and early years were hard. What I’m about to share with you is harder. And it’s not something I always know how to talk about. But I know how to write about it. So this is a new blog about Sam and the current situation we’re facing. With any luck I’ll update weekly.
Please understand that we will be sharing information with Jackson and Clara in a way that’s appropriate for their ages and ask that you refrain from discussing anything with them (or their friends) that you read on this blog.
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A little over three years ago we learned that Sam has a condition that causes cysts to form in his kidneys leading, eventually, to complete kidney failure and death. There’s no treatment. There’s nothing to do but just monitor and wait. Which we did with no clear idea of when his kidneys would become so compromised we’d be forced to think about dialysis (a very temporary fix) or transplant. That’s all you can do – artificially replace lost kidney function through a frequent and lengthy procedure or surgically implant a new kidney. There’s nothing as simple as popping a pill. Just two very involved options that can impact quality of life.
There’s one more option: do nothing at all. Let the disease run its course and let our little boy go.
David and I have struggled with this decision. And by struggle I mean lived in denial and created clever emotional escape techniques. Because neither one of us had any idea how to go about making such a decision. Because no parent should ever be faced with such a situation. Because it’s just not fucking fair.
A few months ago we got some lab results that showed Sam’s kidney function had deteriorated faster than expected. The pressure was on to make a decision. So we spent several evenings holed up in our bedroom, while the kids watched America’s Funniest Home Videos downstairs, discussing Sam’s future. We’d go round and round for hours, turning it into one big snot and tears fest. Some nights we’d set a time limit on our conversations – like speed dating but this was speed life decision making. It may not sound effective but it was much more manageable in small bits.
We came out of one of those conversations with the resolve to get Sam a new kidney. We knew it would be a difficult journey, especially with all of Sam’s other issues, but difficult is what David and I know how to do. We’ve stared difficult in the eye many times, spit in its face and kicked its ass to the curb. Brain surgery on baby Sam? No problem. Severe feeding issues? Handled it. Daily breath-holding spells that required resuscitation? Complete mastery. Self-injury so severe even the doctors were helpless? Got through that one. So a kidney transplant? Piece of cake.
Manageable for us perhaps, but what about for Sam? His life would get a little bit harder. He’d be more prone to dehydration which would mean more hospitalizations. There’d be more doctor visits and more blood draws. He’d also be required to be on medications for life that would suppress his immune system. And donated kidneys don’t last forever. We’d simply be delaying the inevitable.
We’ve always fought battles for Sam, against insurance companies, doctors and government agencies. Sam has fought hard along side us exceeding people’s expectations. One particular surgery he had required him to be on a ventilator and with all of Sam’s breathing problems resulting from neurological issues this was a scary thing. After the surgery the doctors were worried that he hadn’t made any attempt to breathe on his own. “Turn down the sedation,” I suggested, “and turn down the oxygen or up the CO2 or whatever it is you do. You need to give him something to fight for. But he will fight.” And he did within minutes.
Maybe Sam’s done fighting now. Ten years is a long time to endure all that he has. We’re not completely convinced that we’re done fighting but at the moment it seems the right course is acceptance. So this is where we stand, at the precipice of complete heartbreak, but full of courage and big big love.