Category Archives: Awesome Burghers
Growing up in a religious household (don’t stop reading, you jags; I’m going somewhere with this!) with a minister father meant lots of bible instruction, and one thing me and my four sisters learned quite often was about the number seven.
Seven is the number of completion.
DO YOU HEAR THAT BEN ROETHLISBERGER?! COMPLETION. NOT INTERCEPTION.
Anyway. Every time I see the number seven I think …
Year. Seven. For Make Room for Kids.
Do you remember how this started? This whole thing where you and I work to raise money to put XBOXs in patient rooms at Children’s Hospital of Pittsburgh via the Make Room for Kids program at Mario Lemieux Foundation?
(This little dude was the happiest you’ve ever seen a little dude … and he was in the transplant unit at the time.)
Let me refresh your memory. It started right here with this post.
If I fail in my efforts on behalf of Children’s Hospital of Pittsburgh to win this prize, guess what? You’re not off the hook because then I’m going to hold a fundraiser to raise the $10,000 and guess who I’m coming to begging for three dollars? That’s right, YOU. And now that I’m not anonymous I can actually show up at your door with my hand out, my eyes in their best sad-puppy look, and I will weep and beg and gnash my teeth until you fork over your three hard-earned bucks.
We failed because the voting site failed, and we succeeded because you forked over your three dollars so I didn’t show up at your house with the fire of the sun in my eyes and the doom of a thousand demons in my scream. (I think I just wrote a heavy metal song. Gimme a pigeon and I’ll bite its head off.)
200 XBOXs later.
$125,000 later. Here we are. Here’s all the kids we helped:
- Year one: Transplant Unit
- Year two: Adolescent Medicine Unit
- Year three: Cancer Unit
- Year four: The Children’s Home and Lemieux Family Center
- Year five: Cardiac Unit, cardiac step-down unit, and Cardiac Intensive Care Unit
- Year six: Infusion/dialysis unit
That’s a lot of rooms, a lot of beds, a lot of smiles on sick kids’ faces.
(That’s Haley. We follow each other on Twitter now because I am a hip young cool person.)
Year seven. Can there possibly be sick children left who we haven’t taken care of?
Yes. There are.
What about the kids with Cystic Fibrosis, a disease that will allow them to live to see 40 if they’re lucky?
Cystic fibrosis is a life-threatening, genetic disease that causes persistent lung infections and progressively limits the ability to breathe.
What about the kids suffering from Crohn’s and colitis, diseases they’ll fight their entire lives?
Crohn’s disease is a chronic inflammatory condition of the gastrointestinal tract.
That’s our unit this year. It’s called the GI unit and these are children who are regularly readmitted to the hospital for treatment and maintenance. Chronic. They will live with their conditions their whole lives. They know the hospital like the backs of their tiny hands, they’ve been there so much.
Children of all ages are cared for in this unit, but many are teens. Kidney and liver transplant children are also housed in this unit at times. The children in this unit stay for a week at a time, or months at a time, and they have to keep coming back due to their conditions when flare-ups happen.
Transplant kids can wait in this unit indefinitely until an organ becomes available. The kidney transplant children go from this unit down to dialysis and back.
This unit has three sleep-study beds. Children have a very hard time sitting still as all the wires and machines are hooked up to their bodies. Hospital staff has let us know that having in-room gaming would go a long way to helping the children stay still and occupied while being set up for their sleep studies.
Many of the children in this unit cannot move about freely to visit the general playroom area because it is vital they are near their restrooms due to their chronic GI conditions. For this reason, they would be ecstatic with in-room gaming.
Right now, this unit is sharing three XBOXs between 23 beds.
That. Won’t. Do.
Now, you’ll notice the thermometer is only set for $5,200. That’s much less than our usual goal of $10,000. Why?
Because Pittsburgh is awesome.
- Regional Microsoft employees have donated a huge chunk of cash as they do every year, which was matched by the Microsoft corporation.
- The Holiday Park Volunteer Fire Department donated over $4,200 to Make Room for Kids via their bingo night proceeds.
- The ScareHouse Shake at Burgatory provides an influx of maintenance dollars.
- And this year, Genre’s Kids with Cancer Fund will be covering our cost of maintenance of machines already installed in the oncology unit, and will also cover the cost of outfitting a planned expansion that will add more beds. We can’t let some of the cancer kids not have in-room gaming. They must all have this diversion from their awful disease.
That leaves you and I to make up the remainder needed. $5,200.
Here’s where your money is going:
- Maintenance on all previous units installed. XBOXs break, controllers get lost, games get broken or lost, new games are released, new movies as well, and the children make new requests. We ask Child Life in each unit to let us know what they need, what the kids are begging for, and we get take their lists and we use your donations and we get those things for them.
- This year we will be doing maintenance on the pediatric unit at Allegheny General Hospital as well, as you recall we did a little side project to outfit that unit one year. Time to give them new games and movies and to replace any broken equipment.
- We will be putting an XBOX One with a Kinect in the play area of the GI unit, and we would like to upgrade their current small TV to a much much larger one so that the Cystic Fibrosis kids, who need activity to stay on top of their disease, can get some FUN exercise with plenty of room to move and a big TV to do it on. We will get them lots and lots of Kinect games for every age. We will make them thrilled to move their little bodies in defense of Cystic Fibrosis.
- This unit has requested lots of scrapbooking equipment, as the children like to pass the time that way as well. As for units in the past, we will be providing a Cricut machine, cameras, photo printers, and all the fun fixings needed for scrapbooking.
- Mounts and locks for the XBOXs are important
- Games and movies GALORE for the GI unit, as well as extra controllers.
- Portable DVD players. We will be getting half a dozen along with headphones. This is helpful for the children on the spectrum who need visuals to be up close.
- Virtual reality goggles. These are particularly for children on the spectrum as well. This will be the first year we’ve supplied such a product for an install and I’m excited to see what we can find out there for the kids.
- Every bed will have an XBOX installed and we will be providing Surface units for handheld fun and Skype-ing with friends and families, to keep the kids feeling connected to their outside life while hospitalized.
- We will be installing all new XBOXs in the cardiac step down unit. This unit was relocated after our install a few years ago, so last year we refurbished the transplant XBOXs, gave the transplant unit all new XBOXs, and put the refurbished ones in the relocated cardiac step down. Now, we will replace every XBOX in the cardiac step down unit with a brand new machine.So basically, we are not only doing maintenance on every unit we’ve installed so far, we are installing new XBOXs in TWO ENTIRE UNITS.
It’s a lot. And thank goodness we have the partners we do at Microsoft, Genres Kids with Cancer Fund, Holiday Park VFD, and ScareHouse/Burgatory!
And you. Could you spare a few bucks for these sick kids? These Cystic Fibrosis kids? Crohn’s, colitis, transplant, heart, dialysis? Your dollars will touch six units in Children’s Hospital this year, and one at Allegheny General Hospital.
All donations go directly to the Mario Lemieux Foundation’s PayPal account. I don’t touch a penny of your money. It all goes to the sick kids.
It only takes a minute of your time, if even that, to provide these wonderful children with a distraction from their very real, very scary diseases.
We install on April 21. The goal is $5,200. And if I know Pittsburgh, we will get there. Just click the button under the thermometer up there, and give anything you can. Every single dollar helps.
I love you all! Group hug.
“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.