A doctor utters the word dialysis to an adult, and the trepidation sets in.
Hours upon hours sitting in a chair getting treatment for a life-threatening illness. Four hours or more at a time. Up to three days a week.
Oh, you have a life you need to live? That’s too bad. This is your new life for a while.
Say the word dialysis to a child, and they don’t know.
But soon, they’ll know, just like cancer kids learn to say the name of their 24-letter cancer type.
Sit still in this chair for HOURS ON END. With a NEEDLE IN YOUR BODY.
Want to see what it’s like? I found this video. Try not to cry at this bubbly little girl who very matter-of-factly tells you what it’s like …
How would you like to tell your little child they have to experience that? For weeks, months, or maybe years?
I can’t fathom it. I had trouble informing my son there was a chance he would need a scoliosis back brace (he didn’t). I had trouble informing my little girl she might need to wear hearing aids one day (probably not).
Telling them they would undergo dialysis treatments? Nope. Then actually watching them go THROUGH IT? Nope nope nope.
Well, Burghers, this year with Make Room for Kids, we are going to show the dialysis patients at Children’s Hospital of Pittsburgh some love. And like the billboard on Route 30 says, we are going to use love to turn them from patients, back into children.
We are going to give them lots of entertainment options to take their minds off of treatment while they are sitting in the dialysis chairs at CHP. We’re going to give them gaming, movies, and more. They will not be bored or focusing on their treatment. They will be distracted, smiling, forgetting.
We’re also going to be taking care of the nearby infusion unit, where, again, children must remain still while undergoing HOURS-LONG TREATMENTS. They need tablets, games, and more.
And we aren’t going to stop there. We are going to do some needed maintenance on other units we’ve already outfitted. Replace some broken XBOXs. Give them new games and controllers. We’ll be paying special attention to the epilepsy unit and we will be outfitting four additional patient rooms in the cancer unit.
Our goal is also to take care of those we’ve already taken care of. Keep their games and movies fresh.
And I need your help. Microsoft’s regional employees, along with a corporate match, are doing their part to donate a good chunk of funds, but you and I? We have to take care of the other chunk.
A $10,000 chunk. Every penny will go directly to the Mario Lemieux Foundation and we’ll use it to buy what we need for our April installation at the hospital.
But I’m going to reward you. You don’t need to see a dorky picture of me; you’ve seen me at my worst.
But perhaps you might want to win …
– The Penguins Charity Gift bag I bought WITH MY OWN COLD HARD CASH. It should be arriving any day and I’ll let you know all the good stuff I get in it. It will all be yours.
– I’m begging the Pirates for a gift bag as well. I will have news on that shortly.
– The grand prize. One lucky winner will get TWO TICKETS TO THE PIRATES HOME OPENER WUT. I’m serious. The Home Opener. SQUEEEEEE.
Do you have to donate to win? No. Because that would run afoul of lottery laws. You can simply comment on this post to win, but if you have one single extra dollar to donate in love to these sick children, please use the donate button up there on the left under the thermometer. All donors to the drive are automatically entered into the drawing for the three prizes, and their email addresses will be combined with those who simply comment below to win, into one big prize-eligible pool.
I will award the prizes the MOMENT we hit $10,000.
Please help me help these kids and come April, you’re going to be so happy you did.
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.
It was revealed on Wednesday evening that the 2015 Pittsburgh budget called for not only an increase in some parking rates, despite the fact that parking costs are already a bowl full of ridiculous with a side of bizonkers, but also extended meter enforcement hours until 10:00 p.m.
Currently, the meters are enforced in downtown until 6:00 p.m., and that’s great news for restaurant owners and business owners like me and my husband. Park at a meter at 5:30 or so, feed a few quarters, and once that puppy realizes it’s six o’clock, it’s all, “Yeah. Whatever. Bye.”
I was angry when this same policy was put in place a few years back, only to eventually be repealed. Had I more time and inclination, I would hunt down my posts about it, but, yeah. Whatever. No.
I was angry yesterday, when I heard they were trying it again. So I did what I do … I ranted on Twitter.
Read from the bottom up. If I had the time to flip these around, I would, but, yeah. Whatever. No.
I didn’t crop out my Apple Store tweet because, seriously, that happened. I think they’re wizards and I don’t mean computer wizards; I mean wizard wizards. Magic wand wizards. Eye of newt wizards. Of Oz wizards. Either that or Jedis.
Where was I? Right. Suck it, all you who have whined at me and complained that I was going to be super easy on Bill Peduto, because I’m a fan. No, I was pissed and I said it and he saw it and bloop-blip-bleep goes my phone telling me that I’ve got some direct messages on Twitter from the Mayor.
I’m about to get yelled at by the mayor, aren’t I?
Have a look, and you can read these from top to bottom. Lucky you.
First, do you know that when you park at the Cleveland airport, you don’t drive around the garage looking for a spot while shouting at your children that YOU’LL TURN THIS CAR AROUND AND WE WON’T GO TO DISNEY IF YOU DON’T ALL STOP INTENTIONALLY BREATHING ON ONE ANOThER? It is all automated. Electronic signs at each row tell you how many regular spaces, if any, are open, and how many handicapped are open in that particular row. Every space in the garage has a red or green indicator light, so when you turn into a row with an empty space or spaces, you just look down the row for the green light and there’s your open spot. IT IS SUPER AWESOME and it taught me that Pittsburgh was in the dark ages, parking technology wise. I mean. Cleveland. Come on.
Second, when I heard that Bill Peduto was proposing this change after he was against this very thing back when Lukey did it, I imagined he was sitting in a conference room being told there was a budget shortfall and he simply said, “Eh, whatever. Raise the parking rates and enforce those suckers until 10:00 at night. Boom. [drops mic and walks out].” That made me angry. I don’t want the people to pay more just because the politicians couldn’t be bothered to address waste or put any real thought into the budget or into actually making things better.
Having read what the Mayor is saying, I’m intrigued. Data-driven. Technology. Dynamic pricing. I want to see what happens with this. I think Pittsburgh needs this type of technology, and if we really do get it, it could completely change the efficiency, usefulness, and general “I WILL PUNCH A PUPPY IF I DON’T FIND A SPACE SOON” frustration of downtown parking.
All of this is in the ordinance, which you can read here. (p.s. This took me 15 minutes to find which is 12 minutes longer than it takes me to find just about anything on the web on account of I am a web-sleuthing genius. Fix that, City.)
The Mayor mentioned in a later direct Twitter message that they would be better explaining what they mean by “dynamic pricing” at some point next week. However, reading the ordinance, it appears dynamic pricing will only be implemented in certain areas.
In addition to dynamic pricing, there’s something called dynamic HOURS. It looks like everywhere in the city will end meter enforcement at 6:00 p.m., except the North Shore, Downtown, and the South Side who will have dynamic hours from 6 to 10 p.m., meaning within that timeframe hours of enforcement will be adjusted according to supply and demand.
I’m curious to see how that will work and what kind of pricing we will see. (p.s. There is a typo that says 10 a.m. instead of 10 p.m. Fix that, City.)
Sundays will still be free.
So for now, as it seems we’re going to get something in return for paying more, I’m going to quash my anger, even as a downtown business owner, and I’m going to see where this takes us. I hope it takes us into the future ahead of other cities, rather than us doing what Pittsburgh always used to do: do, acquire, adopt, accept, realize, and become things five to ten years after everyone else.
This might catch us up with other cities who are incorporating technology into their parking systems, and maybe even catapult us ahead of them.
However, if these promises don’t come to fruition and in 2016 we’re all being taxed to death, driving around town thinking of punching puppies as we hunt down a meter that will only let us park for an hour for ten dollars so we don’t have to pull into a $30 garage, so help me Nutella, I will become a bowl full of LIVID with a side of LOOK HOW MANY SWEAR WORDS I CAN INCORPORATE INTO ONE BLOG POST.
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.