The High Cost of Living

We bought our granddaughter, Adelia, a new bicycle for her birthday today.

I'd guess no one gasped after reading that sentence - hardly earth shattering news. Grandparents buy their grandkids stuff all the time. But, this bicycle came at what feels like an intolerable price, in a way that has nothing to do with money.

We have a bunch of grandkids. After the first two girls arrived, we did the usual toy/clothes/crap buying that usually follows for birthdays, holidays, etc. As kids do, they'd lose interest in whatever we'd purchased in about two days. We decided we wanted to give something more meaningful.

We opened savings accounts for them, and all those preceding. So, every year, instead of a pile of junk we put money away for each of them to hopefully entice them to go to college. 

No more gifts.

As anyone who has a history with me, or this blog knows - our granddaughter Adelia has lived with an undiagnosed Cerebral Palsy like illness for several years. Specialist after specialist threw up their hands and tossed out CP after ruling out everything else. Ataxic Cerebral Palsy to be exact - which was not good news. They thought...maybe...

The hope held firm in the maybe. 

As long as she went undiagnosed with a maybe trailing there was a chance, wasn't there? Maybe there'd be a medication. A therapy. A miracle. We hoped. 

Let me tell you what I've learned about is NOT the thing with feathers that perches in the soul. It's the thing with a boa constrictor's grip that strangles you like prey. We held tight in its grasp, willing and breathless.

So, every year we put money in Adelia's account like we did for everybody else. 

After all, she might go to college.

And, every year we'd watch her deteriorate, her struggle more obvious.

But, she could probably still go to college.

This week, after nearly four years, she got a final diagnosis from a round table of some of the best doctors in the world at one of the finest hospitals - they were half right before. She is Ataxic but does not have Cerebral Palsy. It's a different sort of Ataxia with most of the same terrible, debilitating, life shortening, symptoms and some different ones just for shits and giggles. I won't bore you with the details but the fact that this disease made itself known around the time she turned two means its course is more determined, relentless.

Adelia won't go to college.

Somewhere in my head, I knew this already. The temporary CP diagnosis should've gotten us all used to the idea,  but I couldn't face it and we kept counting on her future. Her savings account proved she'd have one, didn't it? As long as we kept putting money in it her chances increased. Until they didn't.

The maybe got lopped off.

Now we talk about her quality of life, not its quantity. We're planning for now, not later. We're taking money out of Adelia's savings account to buy her things that she can enjoy now, that might make her living less encumbered.

We're going about it like we need to. 

Her new bike is a special needs, adapted bike...a high-tech, raspberry pink, hella sweet ride.

I feel like I'm walking under deep water with lead in my shoes. They call it crying uncle because you're crying while you do it.

Adelia got a normal bike a couple years ago, before her mobility was as challenged as it is now. But still wasn't able to do it.

"Dad...where's the tools?" she'd ask. "That bike doesn't work."

That's Adelia - the bike's broken. She is not.  

"She's gonna love that new bike, Mom." My daughter, the unsinkable Kayla Mead, tells me. "She wouldn't ever know what it's like to ride one if it weren't for this," she assures. 

I mumbled something, but I don't remember what. 

We both go silent.

"Don't be sad, Mom."

Sad? Sad is an aspiration. 

I search for comforting words, thinking I've found some, I start to speak but the lump in my throat keeps it down. I stay quiet.

"I'm so excited for her to get it. She'll be so happy," Kayla says. I still say nothing. She prods,"Mom?"

As always, I'm battling tears and Kayla is propping me up.

"Adelia is still with us. We'll have a lot of days ahead of us to be sad," she continues. "But today is not one of them."


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