Category Archives: Make Room for Kids

A little more help?

First, you’ll notice the Make Room for Kids thermometer is gone and the reason for that is I took it down ALL BY MYSELF using HTML and widgets and microtechythingamabobiggities and I didn’t break anything.

Hashtag Jedi knight.

Second, yesterday I spent a few hours at the Mario Lemieux Foundation offices in an effort to stalk Mario and steal stuff get the shopping done for this year’s Make Room for Kids phase.

We shopped and shopped and bought and made Amazon Prime smoke a little. On and on we went until we totaled it all up and the adding machine displayed ,”JESUS, TAKE THE WHEEL!”

The issue is that we like to do maintenance. That is we go to the cancer kids and the transplant kids and the other units we’ve already outfitted and we say, “How you doin’? What do you need?”

And they responded. They asked for some new games, because keep in mind the transplant kids are using games that are now four years old. That’s  ARCHAIC in technology years. The cancer kids asked for more games that girls would like to play. The adolescent medicine unit was hoping for some specific Lego games and some extra controllers.

We did our best to fulfill all technology requests from every unit, and we did a pretty good job. But we need a few more things.

– Movies. I already personally purchased a box of movies for the units, but we need lots more and I’m hoping you’ll buy one or two. They will be divided between every unit, because I’d like to get some newer movies for the cancer, transplant, and frequent flier kids too.

– The transplant kids requested a Leap Pad 2 for the younger transplant patients. We took care of that. But we need some games for these kiddos to play, so I’ve put those on the Wish List too.

Maybe you couldn’t donate before. Maybe you hate PayPal but worship at the altar of Amazon Prime. If you want to pitch in, just click here to be taken to the Wish List. Your purchases from the Wish List will be shipped directly to the Mario Lemieux Foundation. They’ll unpack ‘em, kiss ‘em, virtually hug you, and then hand them off to the kiddos on install day in April.

Thanks, guys! I can always count on you to help us help our city’s sick kids.

Group hug.





One last push …

… I suddenly had childbirth PTSD.

Shudder. That shit is not fun. (And some of you moms are all, “LITERALLY!”)

The Internet is hard these days.

It’s loud. It’s crowded. Everyone and every brand is using their voice and sometimes it is hard to be heard from within that noise.

You’ve got Facebook just LITTERED with ridiculous game requests all “PLEASE HELP ME EARN MORE FEED FOR MY HEADLESS CHICKENS SO THEY CAN GROW HEADS ALTHOUGH I’M NOT REALLY SURE HOW MY HEADLESS CHICKEN IS GOING TO EAT THE FEED WITHOUT A HEAD.”

Facebook is full of hoax picture after hoax picture immediately considered as truth, stolen recipes, relentless sales pitches, political bickering, and humans trying to craft the perfect online life full of travel, money, perfect children, perfect jobs, and perfect “taken from an attractive above angle” selfie, while in reality, their crazy life and 1.5 chins are just as normal as yours.

Twitter? Well Twitter is lots of selling, promoting, link baiting, angry customer service tweets, and too much shouting and not too much listening.

Social media these days sometimes feels like you’re standing in a room full of people screaming “GET YER [FILL IN THE BLANK HERE]! [FILL IN THE BLANK] HERE! FRESH [FILL IN THE BLANK HERE]! ONLY NINETEEN NINETY FIVE PLUS TAX!” And in the center of that room, you’re whispering, “Hey, look. I have a cool thing here and it’s something you might actually care about?”

I realize how very “GET OFF MY VIRTUAL LAWN” that sounds and I will wear that orthopedic shoe in a sexy flesh color.

But I’m hoping that from within that noise, you might hear me now and help me. We are SO close to raising $10,000 for Make Room for Kids. $10,000 that will allow us, through the Mario Lemieux Foundation’s Austin’s Playroom Project and through a partnership with the regional Microsoft office, to provide a complete multimedia overhaul to THREE units within Children’s Hospital of Pittsburgh.

We’re going to help the scoliosis kids who are undergoing painful, bed-confining spinal fusions.

Imagine for a second that someone took a flagpole, covered it in spikes, used a blow torch to rip open your back, slammed the spike-covered pole into your back, then used rusty fishing hooks to sew you back together. That’s what spinal fusion feels like.”

We’re going to help the  kids who are often required to remain mostly motionless for days in a row.

We’re going to help the kids who are using artificial hearts while they await a new heart that will give them their lives back.

We’re going to help every single heart patient that enters the doors of Children’s Hospital of Pittsburgh.

We’re going to make sure they no longer have to wait for the shared Wii to be available to them to provide some distractions from the fact that their friends are outside those windows living their lives and growing and learning and soaking up the sun while they lay there ordered not to move.

We’re going to make it better for them, but only if you pitch in the cost of your morning latte. Can you do that for them? I promise you’ll be rewarded in some fashion, because that’s what the Karma Boomerang does. It’s the only thing on the Karma Boomerang’s resume. “Reward and punish reciprocally.” That’s it. And maybe, “Excellent Microsoft Office skills.” I don’t know.

Please hear my whisper and donate via the button under the thermometer. All funds go directly to The Mario Lemieux Foundation. We’ll use that money to outfit these units and to upgrade the games of the units we’ve already outfitted over the years. The Cancer kids are just begging for some new Madden. Let’s get it to them.

I’m going to embed this video and I ONLY WANT YOU TO WATCH FROM 1:06 until the Child Life Specialist is done talking. Then you click pause and stop watching. Because otherwise, it sounds like I’m bragging and I’m not trying to do that, otherwise I would have posted this video way back in November.

I just want you to hear directly from CHP about this program.

YouTube Preview Image

Group hug! I love you all.

 





Then the porkers took flight.

geicoplane

Yesterday was … weird.

I’ve been busting my adorable jiggly ass to get this $10,000 raised for the kids at Children’s Hospital, so I’m constantly tweeting and Facebooking and social-media-ing like a 15-year-old Belieber.

Also, the word Belieber makes me want to kill things.

Hide your pigeons, Mike Tyson.

Anyway, you know that instead of writing “Anyone? Anyone? Bueller?” for years now I’ve written, “Anyone? Anyone? Zober?” because I like to pick on the Dread Lord Zober because I do not fear his mystical powers of darkness and destruction. Much.

So last night, this happened.

And I was flabbergasted. The Dread Lord … giving his cash to the sick kids.

But would Lukey follow suit?

Brace yourselves:

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I died so hard I couldn’t even capitalize the i in “i just died.”

Either we’ve stumbled into some weird alternate universe, or this snow really is making everyone batshit crazy.

The Dread Lord, the wizard of doom, donated. Luke Ravenstahl, my sworn enemy — the Joker to my Batman, the Swiper to my Dora, the Newman to my Seinfeld, is donating. At this point, I wouldn’t  be surprised if a pigeon tried to Paypal me some stale french fries or something.

Maybe you too want to throw a few bucks into the pot so we can give these suffering kids a bit of fun and diversion to help along their healing process?

Click the “Donate” button to donate directly into the Mario Lemieux Foundation account. Every little bit helps!

I love you guys.

 





Oh. Em. Gee.

This just happened.

The Dread Lord.

The Ruler of Darkness.

The Destroyer of People.

Donated to Make Room for Kids.

He DOES have a heart!

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Your move, Lukey.

Your move too, readers.

For sick kids.

 





“A flagpole, covered in spikes, slammed into your back…”

I can’t even remember now how I met the fabulous Laura Kelly. You’ve seen her in ScareHouse videos, or you may have met her when she worked for Visit Pittsburgh or through her involvement with Team Tassy.

She’s an awesome Burgher and unknown to most, she was born with spina bifida, like some of the patients in the Ortho unit we’re outfitting this year via Make Room for Kids.

I asked Laura to tell her story so that you can understand what these kids go through when they undergo spinal fusions as treatment for scoliosis or spina bifida.

Brace yourselves.

__________________________________

laurakelly

“Hi. I’m Laura, and I’m a perfectionist.”

“Hi, Laura.”

If there was a Perfectionist Anonymous, I’d be first in line for every meeting. Since I was young, I worked hard to be good at whatever I did. Many late nights were spent at my parents’ dining room table, writing the perfect script for a video history project or memorizing a calculus equation. No matter what, I wanted to know that I earned whatever grade I got, that luck or circumstance had nothing to do with it.

It’s always been hard for me, a girl who has always wanted to control her destiny, to accept that what has made the most profound and important impact on my life had nothing to do with how much I studied or how hard I worked.

I was born with spina bifida. It was the 80s in central Pennsylvania, so spina bifida wasn’t the first thought that came to anyone’s mind. Ultrasounds weren’t as sophisticated as they are today, so my parents had no indication before I was born  that anything could possibly be wrong.

Luckily for me, though, I have the kind of parents who go into Mama and Papa Bear mode fast. When doctors at home told them the large lump on my back was just from being squished for nine long months (plus 12 days because I’ve been a pain in my mother’s neck from the get go), my parents asked for a second opinion. They were sent to Pittsburgh, where the diagnosis was made and the treatment plan was determined.

I had surgery at a few months old, a procedure that hadn’t even existed a few years before. I often wonder if my older brother and I had switched places and I was 30 instead of 26, what my life would look like. Would I be independent? Would I be walking? Would anything about my life resemble what it actually is?

After the successful surgery, I spent a few days each year traveling to Pittsburgh with my parents to a spina bifida clinic. As a kid, I didn’t understand the furrowed brow of my dad or the pursed lips of my mom every time my name was called to go in for a new test or scan or blood draw. For me, the days in Pittsburgh were my absolute favorite days—no school, no homework, and best of all, no siblings (middle child syndrome much?). I didn’t understand that the kids in the waiting room in wheelchairs were there for the same reasons as me, that their parents were told the same thing as mine when they were born, but, for some reason, I was the one who got lucky.

Fast forward a few years, and I was a regular old seventh grader. I was busy being a perfectionist when I hurt myself playing volleyball. When my legs went numb a few hours after I fell, that furrowed brow and those pursed lips appeared again, and I went to the emergency room, where tests were done and scans taken and blood drawn. When the doctor referred me to an orthopedic surgeon, my own brow and lips tightened. I pulled a muscle; I didn’t break a bone. Why was I going to an orthopedic surgeon?

I soon found out that a side effect of the spina bifida was that the bones in my spine never formed completely. When I went through my big growth spurt, I didn’t have the foundation to support my new height, and my vertebrae bent under the new weight. I was diagnosed with kyphosis, a curvature of the spine similar to scoliosis.

I spent the next year in a back brace (which, btw, if you’re playing basketball against a girl who likes to throw elbows, back braces are the best things ever. A shot in the gut doesn’t do a thing to you, but man, does it give the elbower a dose of her own medicine. Fourteen years later and it still brings me so much joy.).

My curvature just worsened, though, and the doctor explained that if it continued to increase, I’d be risking a lot. He said that my spinal cord was being stretched and stretched, and just like a rubber band, it could only stretch so much before it snapped, paralyzing me. My lungs were also at risk, as they were being compressed. As the curvature worsened, I ran the risk or suffocating myself.

So, it was surgery time.

Imagine for a second that someone took a flagpole, covered it in spikes, used a blow torch to rip open your back, slammed the spike-covered pole into your back, then used rusty fishing hooks to sew you back together. That’s what spinal fusion feels like. Then, when you’re waking up on what feels like a mattress made of potatoes and bowling pins with two rods, a crap ton of screws and hooks in your back and an added three inches to your height, add in the under-five crowd, yelling and laughing and being all around annoying because they didn’t just have surgery and still enjoy their lives. That’s what recovery as a 14-year-old is like.

The suckitude is beyond anything I had ever experienced, and haven’t experienced anything like it since. I couldn’t do anything for myself for a while. I mean, anything. Showers? Not alone time anymore. Putting on pants? At least a two person job.  And this lasted months.

Bending over was off limits for six months, and those six months happened to be my first six months of high school. On the first day, I dropped my calculator and saw no one from middle school anywhere around me. So, I kicked my calculator down the hall to my brother’s English class, knocked on the door, asked to see my brother, and had him pick up the calculator for me.

I went to a Catholic school, so uniforms were a part of my daily life. Let’s talk real quick about the awkwardness that is your mother shaving your legs for you because you’re not allowed to bend over and you have to wear skirts to school. Take a minute to let that sink in. I’ll wait.

Then, of course, there were school dances. The first few were off limits, but I was finally allowed to go to Homecoming, under strict instructions from my parents not to get too close to anyone (Just an fyi for all you parents out there—not being allowed to be touched is a great way to keep your teenage daughter from dating.). My brother was also under strict instructions, and he circled my group of friends every 15 minutes or so, with what we in the biz call “The Kelly Look” on his face (the ‘biz’ in this context is getting in trouble by anyone in my dad’s family).

I was also pegged right away as a goodie goodie, not because of anything I did, but because of what I didn’t, or rather couldn’t, do, namely, slouching in class. It was a hell of a year post-opt, and the only redeeming factor was that it was now behind me and I would only get stronger and feel better as time went by.

Which brings us  to this past summer. Long story short, shit hit the fan. Something went nuts in my back, and I spent two days in bed, unable to stand up, literally crawling to the bathroom and kitchen for anything I needed. When this happens at 25, regardless of past medical problems, you worry a bit.

So, I made appointments and once again had tests done, scans performed and blood drawn.  This time, though, I knew what could happen next. I knew that if the doctor said scar tissue from past surgeries had tethered to my spinal cord, I could be in real trouble. I knew that I could be down for the count for six months again, but instead of having my big brother to pick things up for me, I would have a job and a house and a mortgage to deal with.

When the results came back, I learned that yes, more spinal fusion was in my future. The vertebrae above and below the fusion from when I was a kid had been handling the stress of the past 12 years– the cross country races and half-marathon trainings, the heavy lifting for event set ups and the falls on ice, the crew races and fender benders. And, after 12 years of it, those vertebrae had had enough.

Since my very first surgery was a success because I was born late enough, we all decided to wait as long as I can stand it until I have surgery again, in the hopes that science will make this one my last.

When we decided that, though, I wasn’t happy. Having surgery now would suck, but having surgery in five years? I could have a family in five years. How does someone not pick up their child for a year because of post-opt restrictions? How does someone explain to a toddler that, no, Mommy can’t play with you because Mommy can’t sit on the floor because she can’t bend over to get back up?

I was already missing the children I don’t have.

I was feeling down—really, really down. There was a pity party more pitiful than any pity party this side of the Allegheny has ever seen, and I was the guest of honor.

Then, I heard about Kiara. Kiara and I had met a few months before at an event at which I was speaking. I was talking about my story, and Kiara was the current poster child, having been born with spina bifida, too, but that’s where our similarities end. Kiara’s spent a large portion of her life in and out of hospitals, having surgery after surgery, all to get her to a point where mobility can be obtained.

Kiara is just 11, and this past November, her parents were killed in a car accident. Kiara was in the car, too, and was life-flighted to Children’s Hospital, where she’s had more surgeries, adding to her ever-growing tally.

kiara

Learning about Kiara was like a punch in the gut. What was I doing? I could walk. I could breathe. I could climb the stairs and live alone. And instead of walking and breathing and living, I was feeling sorry for myself because things weren’t going exactly as I had planned.

Things weren’t going exactly the way as I had worked for them to go.

They were going a way that I had nothing to do with, just as they had when I was born or when I hurt myself playing volleyball.  And, just as they had back then, they were going in a way that made me so much luckier than most.

I gave myself a pep talk, told myself to buck up, cowgirl, and decided to do something about it. That something is coming up on February 22, and I hope you’re able to attend.

And, I hope you’ll skip a cup of coffee or two this week and give to this round of Make Room For Kids (click the “Donate” button under the thermometer). The kids who will benefit from these efforts had nothing to do with what’s happening to them. They didn’t skip out on studying for a test or lie to their parents. They weren’t mean to their little sisters or tattled on their big brothers. They’re just kids who didn’t get that lucky this time. Children’s Hospital is giving them the care to make sure they’re luckier from here on out, and Make Room For Kids is giving them something to make the suck suck a little bit less.

And then maybe they’ll be lucky like me.

laura2