Not long ago, I loaded up two of my grandkids and off we went to one of those Mega Hyper Pizza places that latch a vacuum hose to your wallet as soon as you walk in. You know the ones...lots of games, rides, carbs, sugar, overwrought parents and screaming kids.
If you're familiar with this blog you already know my eight-year-old granddaughter Adelia is disabled. She gets around just okay with a walker, but it's a slippery slope. Anyway, we (almost three-year-old brother Che Jr. too) got in my car...wait. Getting in the car with a disabled child and a little boy is, in itself, a turbulent journey. The walker doesn't fit in the car. The seat belt is crammed deep into the back seat on both sides. The car seat is awkward and big. Che Jr. is running into the street tired of waiting on the losers holding him back. Luckily, the walker folds up so you can put it in the trunk...wait. The Incredible Hulk couldn't get that walker folded up. Thirty minutes and three pounds of sweat later we're in the car. I'll just let you imagine what it's like getting out of the car and into the Mega Hyper Pizza place. We made it inside where a great time was had by all...wait. Of the more than 20 Mega Hyper Pizza place staff, not one offered assistance. They stood around watching me struggle to get food from the buffet line, keep Adelia upright, and Che Jr. from getting kidnapped. Parents pushed Adelia out of the way so their kid could get in front of her in line for one of the very few rides that actually worked...wait. It didn't work. A staff member stood idly by while I wrangled Che Jr. and lifted my granddaughter (not an easy task) onto the ride before telling me the ride didn't work after all. They will probably be talking about the crazy lady who got all gangsta over the kiddie train at this year's employee holiday party. I realized that I'd attempted this trip solo because I relied, in advance, on the kindness of strangers. Surely, if it was too hard, someone would help. Right? Another parent or grandparent? Employees who would certainly have been instructed about customer service? Not a one. I pondered this while trying not to cry in the Happiest Fucking Place on Earth. Then, I almost cracked my head open when I fell off my high horse. How many times have I walked past someone struggling without a thought? How many deep sighs rumbled from the back of my throat because the elderly woman in the grocery store went too slow in front of me? How many grocery lines have I left because the developmentally disabled bag kid is working there and I don't have the patience for it? Ouch. I'm not going to be an asshole and say I now know what it's like to walk a mile in Adelia's shoes. I do, however, know what it's like to have walked an inch in my daughter's and son-in-law's. Everyday living with a disabled child, spouse, parent, take your pick - ain't for wimps. You go it alone. My daughter who, by the way, sweetly tried to dissuade me from making this trip by myself called out the Mega Hyper Pizza place management ( 'cause you don't want to mess with her kids or her mama) who then sent a swarm of staff to help, but they quickly lost interest. Welcome to the world for the disabled. It occurred to me that the disabled are the last frontier for causes. Perhaps they need to be transgendered to get attention. We passed laws to aid the disabled didn't we? Yes, but the laws to protect the disabled have very little to do with my point. All the ramps, close parking spots, handrails and widened doorways in the world can't change attitudes or endow anyone with common courtesy. Note to parents - it won't kill little Johnny to wait an extra five minutes to get on the Dumbo ride. And don't get me started on bathroom etiquette. My rallying cry today is simple: Ask. If you see someone (and I challenge you to look for them) who might need help - ask. They'll let you know. Don't be a jerk. Don't raise your kids to be jerks. Are we all really in such a hurry that we need to stampede a kid with a walker or leg braces for a piece of pizza? I promise you, no matter how inconvenient you think it is for you - it's 1000 times worse for them.
15 Comments
There's a reason why the saying is, "out of the mouths of babes," and not "out of the mouths of 40 year-olds." The young view the world with a clarity that eludes anyone past puberty. As we grow older, our ability to see most situations as either black or white gets clouded with at least 50 Shades of Grey. Children have no such filters. Good manners and political correctness don't cloud their judgment or still their tongues.
If you want to get your life right, ask a kid. They will set you on the straight and narrow tout de suite (The Wonder). Our four-year-old granddaughter Amelie said, "Sometimes boys marry boys and girls marry girls." The "now you don't have to worry about this anymore and feel free to mind your own business," was implied. When our granddaughter Madison was five she handed in her test paper blank because, as she told her teacher, "I did this ten times yesterday. You already know I know how to do it." (A Dog's Life) Even our two-year-old grandson dishes out Obi-Wan worthy wisdom in daily soundbites. If you ask him something - anything - he says NO at least 50% of the time. I'll let you chew on that one. Then there's Adelia - the sage. As some of you know, Adelia is our seven-year-old granddaughter who suffers from an ataxic cerebral palsy like disease. She is unable to walk more than a couple of nerve-wracking, dangerously unstable steps without the aid of a walker, but gets around best via wheelchair. Yet, somehow her spirit thrives in inverse proportion to her physical decline (The High Cost of Living, Don't Cry Mom, Sho You Right). Not long ago, on a rainy day in the middle of the street, she told me the secret to a life well lived. In a handful of words, she re-wrote the book on success. "Count to three, Mimi," she said. "For what?" "I want to race my brother." Race? It had taken us ten, painful minutes to walk/carry/lurch from her front door to the curb, two-year-old Che Jr. trailing us. A vice grip on my hand the only prop between her face and a concrete disaster. "Adelia, racing's not a great idea," I said. "Yeah, come on, count. Let go." She pulled out of my grasp, almost losing her balance. Like an idiot, I let her boss me (in my weak defense, I let all my grandkids boss me). "Okay...one, two, three..." Che Jr. took off as fast as his fat toddler legs would go. Adelia took half a shaky step forward and fell, hard. On the asphalt. It was ugly. After I checked for serious wounds and wiped tears (mostly mine) Adelia struggled upward. I helped her stand. She pushed her hair out of her face and nudged me aside. "Okay, Mimi. Count." What the hell? Hadn't we just gone through this? "Adelia," I said, a little exasperated, a lot scared. "You're gonna fall again." "I know," she said. "But, I want to run." I've heard that Valentine's Day is second only to New Years Eve for suicides, which says a lot about love. It doesn't always turn out well, or like you wanted it to, or like you thought it would.
And, some pay the highest price for it. Yet, we're all looking for it. For all its hype, love is rarely a Cinderella tale. For me, the real story lies with the ugly stepsisters. No one ever asked them what they thought about love. They got left behind like so many ill-fitting shoes and rotten pumpkins. But they could tell you - love bites. For every girl who gets invited to the ball, there are at least 100 pressing their faces to the glass watching the dance. And don't even get me started on the frog to Prince ratio. So this is a salute to the ugly stepsisters, to those who struggle with love - to find it, to keep it, to let it go with grace, to redefine it, to live through it. You know...the rest of us. The ones who find out quick that everyday life is the fingernail on the chalkboard of love. These are the real heros of Valentine's Day. They get out of bed everyday, go to a job they don't necessarily love, get little to no fanfare or praise and not enough money, but they do it anyway because they have families to raise. They come home to piles of laundry, dishes and bills. But, they still come home. No rich, handsome prince or princess riding in at their house to save the day. They weather job losses, poverty, general disappointments, children with heartbreaking disabilities and illnesses. They get a big bang out of very little buck. They seek out, and feel enormous gratitude for, the simpler things in life. A barbeque with friends, cookies for everyone at work, a few christmas presents under the tree for every kid, enough food on the table, a trip to the grocery store with their daughter in her new wheelchair. They leave unhealthy relationships. They find the courage to try it again. They stay together when they don't feel like it. They muddle through. Always hopeful, sometimes down, but never out. They take a crushing beatdown from love and still stand. And if that's not enough to make the most optimistic heart close up shop, then shit gets real. They nurse spouses through surgeries, failing health and old age. They find themselves the one left behind. They care for dying parents and grandparents. They raise grandchildren who would otherwise fall through the cracks. They wring their hands in helplessness and prayer over a wayward daughter. With uncommon bravery they usher their terminally ill children out of the world with even more love than when they brought them into it. Yes, this is for all of you who recognize yourselves in these words. For those who've been shot in the heart with cupid's arrow only to find out it hurts like hell and leaves a scar. And Hallmark isn't writing cards with any of this inscribed on them. So, I'll write them. You are all like precious metals, thrown into the flames, to come out bent but never broken - shaped into something new - built to last. I think Valentine's Day is a celebration of you and all you endure for love. And, this year, I'm reminded that love isn't in the air. It's in the trenches. 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."
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?" Me: "No." 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. Me: "No." 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? Me: "No." 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?" Me: "No." 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." I sat. 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? Funny thing about being a mom. Some of it's not that funny.
Don't get me wrong. A lot of it is joyous, glorious, fulfilling. Even when you're sleep deprived, at the fraying end of your rope, wishing you'd had your tubes tied when you were eleven, one look at those tiny, precious faces and somehow it's okay. You have your babies, get to call yourself Mom. Then they start doing shit. You gotta start kissing boo boos. They have to get immunized. They don't like it. Sometimes you have to help the nurse keep them still, hold them down. All for their own good. You tell yourself, Don't cry, Mom. They get pushed off the swing by the little prick next door. Even though their pride is what gets hurt the most, their lip trembles, their eyes fill. They never want to go to the playground again. Don't cry, Mom. They get bit by a dog. Have to have stitches. They hold up pretty well, you're a wreck. The doctor says, Don't cry, Mom. They score the winning point, they hit home runs, they get the starring role in the school play. Don't cry, Mom. They get dumped by the loser you hoped would dump them. They're devastated. You know it's for the best, you wished for it, dreamt of it. But their heart is broken. Don't cry, Mom. Then the worst. They grow up, marry, start having babies of their own. By some cruel twist they want you in the delivery room. It's the most painful labor you've ever had. Don't cry, Mom. Then there's more babies. You don't think they need more. You're not that thrilled even though the first baby is among the finest specimens ever born and your love for them knows no bounds. But they insist and before you know it, between them all they've got six all together. You didn't ask for them, but you've gotta see them. It's love at first sight. Don't cry, Mom. Then one of your grown up babies calls to talk about her baby. The one who's spent 3/4 of her six year life struggling with a still unnamed, Cerebral Palsy like illness. The one who just broke her finger because she can't walk without a walker. And even then... She says they think something is wrong with her baby's bones, the break is odd. She needs one more specialist. She will probably have to use a wheel chair now. The air sucks out of your chest. Your fingers grip your phone so hard they might break. Your heart beats so loud you almost don't hear your daughter say - Don't cry, Mom. |
Archives
November 2017
IF YOU LIKE THE BLOGS YOU'LL LOVE THE NOVELS IN HER TWISTED CRIME SERIES |