Category Archives: Make Room for Kids
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!
Your move, Lukey.
Your move too, readers.
For sick kids.
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.
“Hi. I’m Laura, and I’m a perfectionist.”
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.
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.
Transplant kids. Cancer kids. “Frequent Fliers.” The pediatric unit at AGH. And the entirety of The Children’s Home.
That’s how many sick children the Mario Lemieux Foundation’s Make Room for Kids program in partnership with regional Microsoft employees, has brought gaming and diversions to over the last four years.
Today we’re launching a new campaign in the hopes of raising the funds needed to bring distractions to three additional units within Children’s Hospital of Pittsburgh.
(You can click here if you are unfamiliar with the origins of Make Room for Kids and to learn about how it eventually came to live at the Mario Lemieux Foundation. Hiya, Mario. I love you. Will you marry me?)
1. The Trauma/Ortho Unit
- This 24-bed unit houses children of all ages who have experienced trauma related to car accidents, bike accidents, sledding accidents and more. Oftentimes, children who are in car accidents are treated in this unit at Children’s while their parents are treated at another hospital. That can be very frightening for a child.
- Kids with liver or spleen lacerations are required to lie flat for days at a time.
- The Ortho aspect of this unit is heartbreaking. Here’s where you’ll find the Spina Bifida kids and the scoliosis kids, many of whom have undergone spinal fusions. THEY MAY BE IN THE HOSPITAL FOR THIRTY DAYS OR MORE. They are immobile for five to seven days post-op and cannot get to the common play areas.
- Kids in this unit often have catheters which also prohibit their movement out of their rooms.
- Kids that have an external drain following surgeries cannot move for ten days. TEN DAYS they must be immobile. Have you ever tried keeping a five-year-old still for ten MINUTES? Try entertaining them for ten DAYS while keeping them perfectly still. Did I just break your heart? They are allowed to game though, provided they remain still on their backs.
- This unit currently has no in-room gaming other than a shared Wii that is wheeled from room to room.
- That won’t do.
2. The Cardiac Intensive Care Unit (CICU)
- This ICU is a 12-bed unit housing those children undergoing or awaiting heart surgeries and heart transplants.
- This is also where you’ll find those children being treated with artificial hearts. Artificial hearts. Artificial. Hearts. Your child. With an artificial heart. Go ahead. Process that in your brain. You can’t.
- The average stay in this unit? ONE HUNDRED DAYS. Can you imagine how antsy you’d be in the hospital after three days? Six days? ONE HUNDRED DAYS? Sick kids are the strongest.
- Patients in this unit are often confined to their rooms because it is an ICU. This CICU unit is always surgery ready, meaning surgeries can happen right in the patient’s rooms if need be.
- These children share two wheeled Wii stations. That’s it.
- That won’t do.
(This is David. He is a patient of the CICU. He would love some gaming.)
3. BONUS UNIT: Cardiac Acute Care unit. (CAC)
- All CICU patients are transferred to this unit before discharge. This is also where you’ll find children waiting for heart transplants. When we were touring the unit, we were told there were currently three children in the unit waiting for heart transplants. Your kid. Waiting for a new heart. I’ll sit here for ten thousand years while you try to process it. You can’t.
- When undergoing cardiac cath labs (pretend I’m a doctor who knows what that means. It was in my notes.) patients in this unit must lay flat and not move for six hours. SIX HOURS. Lay still, kiddo full of zoom and defiant life. Good luck.
- There is no gaming available to this unit at this time. We would like to raise the funds to outfit it as well so that patients in the CICU aren’t going from having gaming and distractions to not having those important things when they’re transferred to this unit.
This is ambitious.
We’ve got Microsoft on board once again as our partner. Their local employees have generously donated, and Microsoft corporate has matched, enough funds that we’re pretty set on XBOXs for all three units, as they have done in each of the years past. If things go according to plan, this year will see the install of the 150th donated XBOX via Make Room for Kids.
But we need lots more money to cover a great deal of other items not limited to:
– Dozens and dozens and DOZENS of XBOX games and DVD movies.
– Peripherals such as security cables, XBOX mounts, cords, and more. These really add up. Trust me.
– Controllers and extra controllers so that children can play against family members as well, and to replace controllers that invariably get lost or broken.
– Additional requested distractions such as Cricut scrapbooking machines with all the fixings including paper, photo printers, cameras and more. (One thing we’ve learned over the last few years is how therapeutic scrapbooking is to sick children. It’s more than a distraction. It’s something that helps them process the emotions of their illness. We want to support that. When we tell the Child Life Specialists that scrapbooking equipment is one of the things we can provide, their faces light up. None of these units has any scrapbooking equipment at this time. Say it with me … that won’t do.
– XBOX Live points to install a ton of games on any machines we place in common areas
– Surface tablets or other Microsoft equipment as requested by each unit
– Leapster handheld gaming devices and lots and lots of games, for the smaller patients.
– Bunches of USB drives so kids in the CICU can take their saved games with them up to the CAC unit. It would suck to be winning at Madden only to be told you couldn’t finish the game and had to move to a unit where you would have zero gaming. That won’t do.
– LOTS MORE…
Each of these three units has provided the Mario Lemieux Foundation with a “Wish List” of things they’d love to have or that their kids have requested now that they know gaming is coming. Our goal is to fulfill those wish lists completely.
I’m seeking $10,000 to add to the MR4K coffers over at the Mario Lemieux Foundation because in addition to all of the above, we don’t want to forget about the cancer kids and the transplant kids and the frequent fliers and the kids at AGH and the kids and families at the Children’s Home.
We want to replace lost or broken controllers when needed. We want to give them the latest games, the newest Madden, NHL 14, new Disney games, the latest movies. We want to replace broken XBOXs when needed. That takes a nice pool of funds too. Make Room for Kids was never meant to be, “Here you go. Have fun and have a nice life. Hope nothing breaks and you don’t ever want a new game.”
It is meant to be, “Here you go. Have fun. LET US KNOW IF YOU NEED ANYTHING AT ALL. We’ll be here, kiddos.” So we’ve asked those units to let us know what they need from us this year. We’d like to fulfill their Wish Lists too.
We need $10,000, which is only about 1/3 of what this phase of Make Room for Kids is going to cost. Our partners at Microsoft and other donors are covering the rest.
Can you please help? Spread the word. Get your friends to donate. Every little bit helps. I don’t need to remind you of how poor I was in 2010 and 2011 that I could only donate $5 to causes, and even that hurt sometimes. I get it. I really really really REALLY do. There is no judgment. Ever.
There’s the thermometer up there. Click it or when you’re ready, just click RIGHT HERE, and you’ll be donating DIRECTLY into the Mario Lemieux Foundation Make Room for Kids 2014 PayPal account.
Let’s get this done for our local sick kids so that come April, I can share with you their smiles and love as they see all the amazing things you’ve donated to make sure their time at Children’s Hospital provided them with options for relief from fear and worry.
Pittsburgh, this is half not a real post/half a real post.
This first part is a post to ask you that if you get paid in the next few weeks, could you go to the ATM, get $5 or $10 bucks out, stick it in a baggie in your freezer, and then when I ask you for it in early February when I try to raise $10,000 for Make Room for Kids, you’ll give it to me and the Mario Lemieux Foundation? (Hiya, Mario. I love you. Will you marry me?)
Hell, send me a picture of your $5 in the freezer. I’ll post every single damn one of them. We’re being crazy ambitious this year and we’re going to need every single cent. I promise these kids need it. Group hug.
So last night was the Pittsburgh Magazine Pittsburgher(s) of the Year party, honoring the Pirates.
It was held at the Casino, included real actual outdoor and indoor fireworks (Pittsburgh, YEAH!) and was very fancy. Wine, shrimp, crab legs, grape leaves, stinky cheeses. Someone make a chart that shows the relationship of cheese stinkiness to cheese fanciness.
Wait. I’ll do it.
There you go. I just gave myself an A-plus for that.
And a gold star.
And a no-homework pass.
I’m very self-congratulatory.
It was a great event. I got to chat with Rick Sebak about getting drunk on margaritas.
I got to be the sole attendee drinking IC Light from the bottle.
I got to meet some readers, one of whom is a nun and I was like, “Tsk. Does God know you’re reading my potty language?”
And she was like, “Shut up. I love you.”
Nuns are cool.
Neal Huntington, Bob Nutting, and Frank Coonelly all showed up to accept the award and then stick around and chat with attendees. I just happened to be standing near Neal Huntington when he found himself alone and THAT WOULDN’T LAST because it’s a bird; it’s a plane; it’s …
SUPER AWKWARD BLOGGER GIRL! [awkward kung fu moves]
Remember how embarrassing I was when I met Mario Lemieux? Why fix what ain’t broke?
Me: “I LOVE YOU. I do. I love the Pirates. I am their biggest fan and supporter and I love you and can I touch your arm and your silky hair will you marry me you are the best [sports butt slap] you have better hair then Jeff Jimerson I can’t believe I just said that don’t tell Jeff how do you feel about pigeons can I hug you I love the Pirates will you marry me I am a really really big fan can I get a picture with you can it be a selfie okay great will you marry me?”
Neal: [scared smile]
[swishes cape and runs off in dramatic fashion]
1. The other night, while listening to my son read his book-report book aloud (if I don’t make him read it aloud, he’ll skip chunks of pages at a time on account of laziness), he got to a part where one kid calls another kid a jackass. The look of pure joy on his face as he, without getting yelled at, uttered the word jackass three times … well, that’s the true meaning of Christmas.
I’m kidding, Dad. I know what the true meaning of Christmas is.
PRESENTS! DIAMONDS! CASH DOLLAH BILLZ! [makes it rain on the strippers]
And my phone will be ringing in three, two–
2. The winner of the Yinzer Gift Guide giveaway was notified and has accepted the prize. Shop the guide here!
3. It drives me insane — PURPLE MINION INSANE — when people refer to the Roberto Clemente Bridge as the Sixth Street Bridge, so I wrote about it for Pittsburgh Magazine, hoping to convince these lazy butts to stop being such jerkfaces:
This is not Snoop Lion Doggy Dogg Hedgehog Owl changing his name every time he moves his bowels. This is not the year of our Lord changing its name every 365 days. This is an iconic bridge whose name was changed once more than a decade ago. At this point, if you’re still calling it the Sixth Street Bridge, you’re just stubbornly refusing to put forth the same effort you do when writing the correct year on a check in early January.
4. Barebones Productions has to be having a hell of a time advertising this play in the local media:
“Things are starting to look up for recovering alcoholic Jackie and his girlfriend Veronica…until Jackie spots another man’s hat in their apartment and embarks on a sublimely incompetent quest for vengeance.”
I’m a big Patrick Jordan fan.
Can’t wait to see it. Tickets here.
I kinda love ‘em. Gonna do a giveaway of them soon.
(Not a paid ad.)
6. Interactive map of Pittsburgh’s lost inclines! Historygasm.
7. Community Human Services Holiday Gift Card drive is underway. It’s so easy to just buy a few gift cards for those in our city who need them the most. Check it out here.
I’m going to try to get my butt to the Hough’s party again this year.
8. Just me, putting a bug in your ear that in early February I’ll be begging you for some of your dollars to donate to the next phase of Make Room for Kids with the Mario Lemieux Foundation and local Microsoft folks. We are going to be outfitting two units at CHP with gaming and other tech distractions … the Cardiac Intensive Care Unit (CICU) and the Trauma Unit. More soon on that. Just do me a favor and set a few bucks aside for it. LOVE YOU!
9. Shut up! Fallingwater has a satellite holiday gift store downtown for the holiday shopping season!
I’m so there.
I like this one too:
11. Let’s check in with Jeff Reed on Twitter:
12. Has anyone heard from Shaun Suisham lately? Did he get the trash I left for him on his lawn?
Not at all.