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 hope...it 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."
The last eight months have been tough. Illness, death, surgeries, retirement, moving...all those serious life changes they warn you about. You know, all the stress inducing ones. In the background, a granddaughter suffering with a debilitating disease and to a much lesser, but still off putting degree, this Mother's Day was my first without a mother.
So, I find myself in a daily quandary, my brain a-jumble. I stare off into the abyss, overwhelmed, hanging on the ledge not really trying to pull myself up. Getting by is fine for now.
I have 3 pairs of glasses and often can't find even one pair. I walk (limp) into a room and can't remember why I'm there. I'll make a phone call and feel surprised when someone I know answers. Making a grocery list feels like writing a thesis.
Yet, oddly, I find myself thinking about Father's Day. Perhaps to get a jump on it, to not forget. Even though my father is dead. My husband is a father, my sons-in-law are fathers...so maybe that's it.
Or, maybe not.
Lately, I've been thinking about my stepfather- who is just as dead as my father. He and my mother were married over 30 years. A miracle of midwestern stick-to-it-ness if you ask me. But, stick with it they did. Until his death several years ago.
I've discovered when you're feeling a little beat down, your brain goes places it never would if you felt stronger. You don't have the energy to keep at bay the feelings you'd squashed before, or you realize in a weak moment you feel differently all together.
Barely a teen when my mother and stepfather married, I felt no love for him. Just a casual disdain that grew into a lazy hatred then settled into an annoyed apathy.
He was an alcoholic. Cruel, unreliable, unpredictable. Both my mother and I knew it from the get go. She married him anyway, as bad men were her comfort zone. I can't say I felt disappointed. Experience had already taught me that fathers were absent, uninterested, unavailable, violent.
He ruled our house in a surly silence, where something always felt like it was moving in for the kill. We waited every night till eight o'clock when he'd stumble off to bed, in a drunken haze and our collective sigh of relief signaled safety at last.
If you'd asked me to list his good qualities, I couldn't have. But, I would've been wrong. He had some. I just never gave him his due credit.
He was the first man to ever tell me I was smart.
He was the only parent I had who told me I could, and should, go to college.
When I got a B in history because my teacher didn't believe in giving A's he drove to the school, without my mother, and had a talk with the teacher. My stepfather was 6ft. 4in, 250 lbs. He came back with my A.
He expected me to get A's and if I didn't, his disappointment could bring me to tears.
He taught me to work. He fought my mother when I wanted to get a job while still in high school. He lost.
He spent all day catching a rabbit for my science project. He was falling down drunk...but this isn't exactly a Hallmark card, is it?
He thought I needed limits set, not money handed out. My mother disagreed.
After he had the stroke that signaled his downfall, he mellowed. He became a loving, adoring grandfather to my daughter's daughter. He'd let her do anything to him she wanted. He never raised his voice or his hand to her. But old habits die hard, and I kept watch, a bundle of nerves when they were together.
She still points to the stars and reminds us that Papa Ed is there among them.
When he finally died, 12 long years later, of various smoking and alcohol related diseases, I felt nothing. Not sad. Not relieved.
Now, I feel something else. Not love exactly. But a grateful affection. Not for the man he was, but for the man he tried to be, but couldn't.
I'm on crutches.
Luckily, its temporary.
I don't think I have the temperament to deal with all the jackasses that come out of the woodwork when you're impaired. I'd be dragged off to jail, hobbling.
Take the TSA.
Me on crutches: "I'm not sure how I'm supposed to go through security."
TSA Jackass: "They'll hold your crutches when you go through the body scan."
Me: "Ummmm...I can't stand up without the crutches. I can't put my weight on my leg."
Jackass: "Hmmmm....they'll give you a cane."
Note to anyone who doesn't know - you can't just give someone who needs crutches a cane and wish them Godspeed. Walking aids are not interchangeable and should be prescribed by someone with an actual medical degree, not a guy with a bully club and a highlighter pen.
Me: "I can't use a cane. That's why I have crutches."
Jackass: "Hmmmm...can you take your shoes off?"
Me: "Does it look like it?"
Jackass pointing: "Well...they'll have to do a full body pat down then. Wait over there. She'll take care of you."
TSA World Women's Wrestling Champion: "Can you take off your shoes?"
WWW Champ (three times my size, pulling on latex gloves): "I'm gonna have to pat you down. Do you want to go to a private room?"
Never go to the second location.
Champ (snapping gloves): "Okay. Raise your arms up at your sides like this." She mimics Christ on the Cross as a helpful visual aid.
Me: "I can't STAND WITHOUT MY CRUTCHES."
Champ: "Hmmm...okay, well...do you have any foreign objects implanted in your body?"
Besides that giant dildo?
Champ: "Okay....well...front first."
So, there in front of an entire airport full of people, the Champ gave me a thorough grope. Zealously serving and protecting her country by ensuring my boobs weren't locked and loaded and a scud missile didn't lurk in my crotch.
Champ: "Can you take your shoes off?"
I thought we'd covered that.
By that time hubby finally made his way through wearing that look he usually reserves for deviants and TSA's. He wasn't allowed to accompany me. He had his own security to maze to meander in case he'd stashed a life threatening quarter in his pocket or the surprisingly deadly extra ounce of shaving cream.
Champ: "I need to put those crutches through the scanner."
Me: "I CAN'T STAND UP WITHOUT THEM."
Champ: "Oh....right...I'll get a chair."
Champ: "Can you take your shoes off?"
After I cried Uncle and hubby helped take my shoes off, Champ swooped off with my crutches. After it was determined I'd stashed no James Bond type foolery in them and I posed no threat to national security, they let us go.
This trip to the airport was the first I'd been on other than therapy. While on it, I saw the light.
For the most part, the general population has an appalling disregard for the physically limited.
They shoved past me to get ahead. Can't possibly go half a second slower.
They ran me over to get on, and off, the elevator first.
They jumped ahead of me to get on, and off, the plane.
For me, this is a minor blip in an otherwise healthy life. For my six year-old granddaughter Adelia, it's a lifestyle. She has Cerebral Palsy and can't walk without braces and a walker. Her everyday life is an exhausting struggle to get from point A to B. God forbid she should ever decide to get away from it all and take a trip where she can expect public embarrassment and complete disregard for her dignity as a rule.
I learned big lessons that day and will forever be on guard. That old cliche is a cliche for a reason. You can't know what its like to be someone else till you've walked, limped, or rolled, in their shoes.
It won't kill me, or you, to take a breath and show some consideration for someone who relies on the compassion of others.
We don't really need to harass the disabled, do we?
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