Category Archives: Awesome Burghers
“This makes it feel like you don’t even have anything wrong with you.” — Taylor, 19, undergoing an infusion treatment at Children’s while playing on the new XBOX just installed in her station.
Taylor has been coming to Children’s for eight years for treatment, and each one lasts hours and hours. Before yesterday, she did not have gaming to occupy herself while sitting in a treatment chair in the Infusion/Dialysis unit. But this beautiful, soccer-playing young woman saw we had soccer games like FIFA in the box, and her eyes lit up and she got busy playing.
Now, Taylor’s words to KDKA, “This makes it feel like you don’t even have anything wrong with you,” is basically the entire idea behind Make Room for Kids and is the very foundation of why we continue to raise funds and operate … our belief, our strong belief that gaming takes young patients’ minds off of scary times and sometimes painful or long treatments.
To hear a patient voice that exact thing, completely unprompted and unscripted, well, it was something. I’ll never forget that ever. She validated with one statement everything we’ve been doing for the past six years with Make Room for Kids. You can watch the video of Taylor speaking to KDKA’s Heather Abraham and make note of how Heather’s face completely changes when Taylor utters that sentence. It’s powerful.
Now, let me walk you through the day so you can see where your donations went!
Arrival. 8:55 on the dot, two SUVs slowly pull up to the main entrance loaded with secret service –
Kidding. With boxes and boxes and boxes. And already there and waiting are lots of blue-shirted Microsoft employees, Mario Lemieux Foundation staff and hospital staff.
Here’s the mastermind of logistics, Microsoft’s Luke Sossi, who has basically run the “HOW THE HELL ARE WE GOING TO MAKE THIS HAPPEN” part of Make Room for Kids since the first year.
Assembled, time for a quick team picture!
And then Luke says, “Go to your places!” This year, the team split into two units because we had our biggest undertaking yet. Installing a new unit, maintenance on all units previously installed, and then pulling out and refurbishing/upgrading every XBOX in the transplant unit.
I head with Luke and crew to the fourth floor where the Infusion/Dialysis unit is and there they install the first XBOX in Taylor’s station.
She sweetly says thank you as if that’s the end, and I’m all, “Well, how about a game? Do you play?”
She mentions she plays Playstation with her brother, so she can pick up gaming pretty quickly. I grab the box of games and movies we designated for that unit. She saw soccer, eyes lit up, and that was that.
Across from Taylor, we have 15-year-old Haley. Who wants to do boring homework now that the XBOX is there? Not Haley.
She was playing some sort of racing game, I think. She was there with her “favorite uncle” who brought her in and sat with her during her treatment. Big Penguins fans, her family.
After installing all the XBOXs in that unit and leaving them with their games, controllers, and more, we headed up to the seventh floor where the staging area had been set up, and here’s how that room looked.
What is all this madness, you ask? This is the Microsoft team cleaning, refurbishing, and upgrading every original XBOX that was installed in the Transplant Unit five years ago, our first year of Make Room for Kids. A few XBOXs went on to replace broken or missing units and the rest were put in storage at the hospital so Child Life staff has backups should any unit break or need serviced. No kids in our units are going without gaming for long now that we have this backup refurbished stash.
They then installed brand new XBOXs in every transplant room, therefore, we did two COMPLETE units yesterday. Infusion/Dialysis and Transfusion. We also put XBOXs in the Cardiac Step Down unit which was relocated last year after our heart unit install.
Drew and Karen from the Mario Lemieux Foundation. Keeping an eye on that organized chaos.
In the transplant unit, we met Case, who isn’t quite two yet. While his XBOX was being replaced, Case wasn’t much feeling up to having visitors and certainly not having a camera on him. Until I asked him if he maybe wanted a game, and he was a changed child IMMEDIATELY. I ran to grab a few games he might like, thinking to give him one, and he grabbed all three in quick succession, squealing as he looked at each new title.
And then I said, “I don’t suppose you like Paw Patrol,” because he’s at the exact age for that. And he nearly exploded. Nancy Angus, executive director of the Mario Lemieux Foundation ran to get the DVD from the box and he was basically on Cloud 9.
His sweet mother was attempting to help him get his new stuff organized and he was all, “PAW PATROL PAW PATROL PUT ON PAW PATROL MOMMMMM.”
Further down the hall, this sweet girl who asked for a racing game and was thrilled we had a new Sonic the Hedgehog game in the box.
Here the Microsoft employee is showing her how to switch the TV over to the XBOX.
A little further down the hall, this adorable kiddo, watching the Microsoft employees install the new XBOX.
Smiles for days.
Back in the staging room, they’re still working furiously to upgrade so many old XBOXs, while Nancy Angus and I work on distributing the new games and movies to all the other units we’ve already outfitted.
Hospital staff chatting with Nancy Angus as we get closer to completion.
Back in the patient rooms, another happy kid, Noah!
Here’s Luke with hospital employee Frank. Frank works for months and months, often coming in extra early, to prepare rooms for installations. He’s the man. The man.
Finally, all XBOXs are installed, old are upgraded and refurbished, games, movies, cameras, music CDs and other requested goodies are distributed, all units received an extra stash of XBOX controllers, the Infusion unit received four Surface tablets, and we are done and ready to let the kids play … and forget for a bit.
It was a fantastic day that saw us reaching many areas of the building and that meant getting to see many many smiles.
Here’s the Lemieux Foundation’s photo gallery.
And here’s a hug from me to you for donating.
Group hug, guys.
I would say that every day is a gift, but I don’t actually agree with that. I will say that every day is a chance to love, and my best guess is that love is what it’s all about.
I can honestly say that there is no story or person I’ve written about in my ten years of blogging that has stuck with me more than Amy’s.
I think about her at least once … every single day. Maybe while driving. Or as I pray. Or as I lay in bed at night with my thoughts. Brushing my teeth. Almost always as I tuck my children in or watch them climb onto their school buses. She flits across my brain and leaves a ripple of emotion in her wake that will reverberate until the next time.
Perhaps it’s because I’m a mom too. Perhaps because she’s around my age. Like me, she has a son and daughter (yes, HAS. Losing children doesn’t ever stop you from HAVING those children. You will always HAVE them.). Perhaps because I’ve met her, dined with her, hugged her.
Sometimes I have to stop my brain. If I imagine what happened to her happening to me, the hypothetical pain cuts my air off. Suffocates me. My heart tightens. A sense of panic tries to settle in and I have to literally shake my head and move away from those thoughts.
I’ve learned about love, loss, and strength from Amy’s story.
It has been a long time since she’s written — more than a year, but nearing the 6th anniversary of her children’s sudden deaths, it makes sense that she’s found need of an outlet for some of her emotions. Her latest post is a lesson in perspective, and such an important one.
It’s a lesson in understanding that the burdens we bear are only as heavy as the weight we’ve assigned to them. So if you’re feeling overwhelmed, as we all are at times, with a big pile of the little stuff … Little problems. Inconveniences. First-world problems. Relationship struggles. Job issues. Family dynamics. Drama. Whatever burdens you bear can be greatly lessened with a little bit of perspective. A little step back and look at the grand scheme. The big picture. What’s REALLY important.
And I think that’s the most important thing Amy’s story has taught me. Perspective. When things start to add up and get heavy, I remember Amy, and my burden is lightened.
I love that.
I hate that.
I hate that she experienced something that allowed me to learn it. I hate that I’ve gained something from her because there are one billion other ways I’d rather learn that lesson, than from a beautiful woman who lost her children.
Pittsburghers support Pittsburghers, so please have a read and leave her a small comment of support and love, especially as we near April 6.
So my mother says to me she says, “You better write something on your blog soon or your readers are going to forget you exist.”
And I says to her I says, “I’m good enough, I’m smart enough, and gosh darn it, I DO EXIST!”
Part of being this person called “PittGirl” is getting invited to stuff. Lots of stuff. Fun stuff. Boring stuff. Fancy stuff. Casual stuff. Shows, talks, press conferences.
Part of being an introvert is saying no, graciously and kindly, to most of the stuff I get invited to.
I’m just not good at people. I’m good at faking being good at people, especially with a few glasses of liquid courage in me.
But when the Heinz History Center invited me to the unveiling of the new Mister Rogers permanent exhibit, in which the actual sets from Mister Rogers’ Neighborhood would be on display on the 4th floor of the center, I didn’t say yes, I literally emailed them back and I wrote, “Um? HELL YES.”
Because I’m fun like that and I figure PR people always get boring emails back all, “Yes, sirs, I wouldst be delightest to attend your function presently, forsooth.”
Then there’s my email, “HELL YEAH!”
I digress. Naturally.
But me? Mister Rogers? Like ——><——- that.
I’ve written about it before, about my love for Fred Rogers. As a child, Mister Rogers’ Neighborhood was my show. If I recall correctly, it came on after Sesame Street. As an adult, I’ve read books and watched documentaries about his life, about his “deep and simple is better than shallow and complex” philosophy. About his “BE PRESENT IN THE MOMENT” philosophy, which is one I really struggle with, as an introvert. It’s hard to be present when you just want to run away from all the people. I’m working on it.
So yesterday, I walked into that exhibit, and man, the feelings. The feelings the feelings the FEELINGS.
And it was emotional and I didn’t know why until the drive home when it was like, EPIPHANY.
Why Fred Rogers was my homeboy.
Because as a child with a severe hearing disability, before closed captioning was on every TV, before I was old enough to even read closed captioning, I didn’t watch much TV. I can’t read cartoon characters’ lips when all they’re doing is opening and closing and not forming any shape that resembles a phonetic sound. Sesame Street puppets? No lips to read. I associated the characters with sounds. Cookie Monster: OMNOMNOMNOM. I’d laugh. Snuffleupagus? WUHWUHWUH. Big Bird? [nasally nasals]. The Count? MWAH-HAHAHAHA! Super Grover? AHHHHHHHHHHHHHH!
Sesame Street was a frenetic mishmash of sounds that my brain used to create a story that probably didn’t really go with the story I was actually being told. But when you can’t understand the words, you create your own story. To this day, I still do it if I’m watching a show or movie without captioning. I use the pictures to write my own story. It’s fun and it takes some frustration out of not being able to understand what is being said.
But then there came Mister Rogers. Quietly, with no background din for me to try to listen through. Speaking so so so slowly and deliberately that a little girl with hearing loss could understand exactly what he was saying to her while teaching her important things about batteries, music, art, dancing, life, and crayons.
Sure, I had to make up the stories when the puppets came on, and I honestly don’t want to know what things that demon Lady Elaine was saying, but I understood every word Mister Rogers said to me, and that’s why I gravitated toward him, his show, his life lessons, his work, his everything. And I never realized it until yesterday, at the age of 40.
So, thank you, Fred Rogers, for letting us mostly-deaf kids have something to listen to without getting frustrated because we had no clue what that green guy in the garbage can is so damn grouchy about this time.
As for you, Burghers, go to the History Center and check out these iconic REAL sets from the show. Go feel the feels you’ll feel.
And buy one of these awesome sweater-changing mugs while you’re there!
While I have you here, some stuff I wrote:
So you says to your friend the other day, you says, “That bitch never writes anymore.”
Oh, I write. I promise you. Every day I write.
Like I says to my husband the other day, I says, “If I didn’t write, I’d shrivel up and die.”
I just haven’t had time to write much HERE. In this space. But such is the evolution of my life as a writer, mother, wife, restaurant owner, forty-year-old.
I’ve written so much. I compiled my Burghy gift guide and forgot to share it here. I LITERALLY ACTUALLY FACTUALLY HISTORICALLY solved the mystery of why we buy milk, bread, and toilet paper before snowstorms … and forgot to share it here.
I even wrote a gift to you.
To all of Pittsburgh.
I spent about seven hours working on this gift to you. Reliving 2014 for you. Going back through the year, all the news stories, the viral stories, so that I could remind you that Pittsburgh, your city, had a very good year. So you don’t forget, or grow complacent, or become blasé about a city that refuses to slow down, give in, give up, regress.
You can read that gift here in my annual Ten Reasons Why Pittsburgh Owned 2014.
Take a guess what just three of them might be, let alone ten, and then go read all of them. You too will be surprised about how much you’ve forgotten about 2014. Pittsburgh doesn’t need the giant rubber duck or the yarn bridge to still make a lasting, noticeable mark on the world … and 2014 proved that.
We have a great home, guys. Give it a hug any way you can find to do so. Even if it’s just standing at the Point and taking a long deep appreciative breath.
Group hug, Merry Christmas and Happy Holidays.
Each year right about this time is when real true havoc hits America.
It’s not bad enough that we feel pressure to make every holiday season the BEST. EVER. with turkey, trimmings, lights, cards, gifts, parties, etc., but now we’ve got Pinterest and I don’t know if you’ve plugged “Christmas Cookies” into the Pinterest search box lately, but please do so that you can also see what these overachieving batshit Martha Stewarts are calling Christmas Cookies these days. (Click the pictures to be taken to their respective recipes, if you’re so inclined, you sicko.)
GTFOOH. Yeah, let me attempt to make teeny tiny birdies kissing in a tree in a manner that doesn’t look like I made a sad purple octagon. Let me try to ice that little crooked reindeer grin in a way that doesn’t look like Rudolph took too much meth before lining his lips with eyeliner. Let me learn how to feed a bunny rabbit a diet of sugar water and corn syrup so that he will poop out teeny tiny little marshmallows for my little cocoa cookies.
My point is, it’s so easy to get wrapped up in material inadequacies this time of year. The neighbor’s house is going to be better decorated than yours. Your frenemy’s turkey moister (dirrrrrty). Their gifts better. Their children cleaner. Their trees more majestic. Their bunnies pooping out perfect little tiny marshmallows and their army of caterpillars spinning perfect silk to use for wrapping ribbon. The threads of Christmas start creeping out and intertwining with Thanksgiving and your turkey decorations have candy canes on them and the Joneses are winning so you start sprinting to keep up with them and before you know it, you’re literally up to your eyeballs in Amazon Prime boxes that you are only 75% sure of the contents therein.
Did I just rant? Sorry.
Guys, it’s fine to get wrapped up in all of that, if that’s what presses your JOY button and flicks on your MEANINGFUL switch. But a little perspective helps us to further appreciate what we have OUTSIDE of our Pinterest-perfect lives.
Stories like that of Michael, a child who spent 200 days in Children’s Hospital fighting an incredibly painful and rare medical syndrome. 200. Days. I almost throat-punched an orderly to escape the hospital 18 hours after the birth of my second child.
Michael was granted a wish and he wished a selfless wish. He’s got a Pittsburgh heart in his small chest.
At about 130 days into his stay at Children’s, a family friend with impressive connections* played the part of Bill Gates and asked Michael, “Can I give you something? What do you want? Toys? Games? Do you want to meet a Steeler? Penguin? Pirate? What do you want most? Anything!” I guarantee if Michael had said, “What I want is Mario Lemieux to walk in here carrying Troy Polamalu, who is carrying a basket of toys as big as Clint Hurdle,” the friend would have said, “Done.”
Because that’s what you do for kids who have suffered more than any adult could or should. In his soft voice, Michael said, “I just want someone to tell Pittsburgh about a nice thing someone did for me.” So I was contacted.
Go read! Next week, I’ll have an update on Michael for you, after I visit with him again.
But for now, read, absorb, and realize that your cornflake Christmas wreath “cookies” turning out to look like Grinch poops littering Mount Crumpit doesn’t really mean one single important thing.
Life’s just so much bigger than that.
Michael taught me that. Let him teach you too.
*That well connected friend is Saul Markowitz of Markowitz Communications. He’s got a Pittsburgh heart too.