We attended a birthday party at a park for one of Pip’s friends yesterday. It couldn’t have been a more laid-back affair – mostly just kids playing at a park and having a snack – my kinda party. At one point, early on, the birthday boy burst into hysterical tears. You know the kind of open-mouthed sobbing which elicits streams of drool and sometimes silence before another breath is taken and another wail is issued forth? Every parent in attendance just looked at him calmly and smiled cause, you know, we’ve all had at least one five-year-old.
There were two other break-downs and some inability to share party favors. Typical stuff.
It’s hard to be the center of attention. It’s hard when all eyes and expectations are on you. Not just for kids – it’s hard for adults. When I was a child, I once asked my mom why brides and grooms so often smeared cake on one another. My mom sighed and said, “They can’t handle being the center of attention. They don’t know what to do with themselves. Fortunately, you come from a line of theater people. You won’t freak out when the spotlight hits you…and you won’t allow anyone to mess up your make-up and costume.”
If you read this blog, you know I have a “miracle kid.” He was chosen, recently, to be a “Kid of the Day” for a Children’s Miracle Network fundraising campaign for Lurie Children’s Hospital. The commitment involved half a day at the hospital: an informational meeting, a photo shoot, a recorded interview for radio, and a video interview for the website.
Because I am, admittedly, an idiot, I chose to get some more of our business done and I made an appointment to get his blood drawn that morning as well. That was the day they wanted…we’d be at the hospital anyway…no-brainer, right? Sigh….. I’m an idiot, ya’ll.
So, up at 7, in the car by 7:45, stuck in some traffic, arrive by 8:50, waiting room by 9am. There was a long wait for the phlebotomist. My kids were angels – they sweetly colored pictures at a table. Blood draw and Pip barely flinched as per usual. We got to the meeting and my kids played a friendly game of Candyland with some other children. So lovely. They went to a photo shoot and Pip was cooperative and Bunny was helpful.
Back in the conference room to wait for our interview, Pip began to run in circles. It was joyful. It was spirited. It was our first indication that things were beginning to unravel.
We were called in to do our radio interview and I told pieces of Pip’s story. He’s bigger now so he knows this is all about him. He knows he’s the star. He was asked to say a few words and he couldn’t. He just ceased to function in that way. If there had been a bride present, he would’ve smeared cake on her face. He wasn’t throwing any kind of fit. He was perfectly good-natured. But he was ornery. He was unwilling to do what was asked of him, for sure. It was irritating – not that the professionals at Children’s would ever let on – but it was TOTALLY irritating. There were deadlines to make and planes to catch and Pip couldn’t have cared less.
After that, we went almost immediately into another room for a video interview. The idea was for me to tell his story while the children sat next to me looking healthy and happy. Or played happily in a corner. Or gazed out the window at the magnificent view. Whatever. That should be easy. But there was a video camera rolling and it had been 3 hours of stuff at the hospital and Pip was not willing to sit next to his sister and look healthy and happy. He wanted to crawl on me and stick his rear toward the camera and make bodily-function sounds with his mouth. He wanted to tickle his sister so she’d leap from the chair or lay on her so she couldn’t breathe or push her out of her seat. He wanted to yell “AHHHHHHHHHHH!” every time I started talking so that I would have to stop.
And everything he did was magnified X45 in my mind because I was just so desperate for him to cooperate and just so completely unable to get him to do so.
There are a couple little girls – miracle girls – who blow my mind. They are poised and friendly and sweet and chatty. They almost seem unreal. They never throw fits, they can speak eloquently about a life of medical hardships, they can speak to adults as easily as they can speak to kids, they are never shy or morose. I watch them at various hospital functions and I drool. Pip is so cute and can be so charming – why can’t he act like them when it counts?!
By the time we got to that video filming, I was on the verge of tears. I was watching him display all this behavior that was affecting the work of people we were trying to help and they were masters of keeping their cool but it was SO frustrating. I felt like a terrible parent and I felt like I was wasting everyone’s time and I was furious with Pip but I didn’t want to show that I was furious and I was furious with me for not being better able to control him. And how do you discipline a child who is only there because it’s a miracle he’s alive? “Hey, miracle kid! I got a miracle for ya. It’ll be a miracle if I don’t start screaming at you in the middle of this crowded hospital. Now SIT before I MAKE you sit!”
Nope. Can’t do that. What could I do? We had a few little private conversations…a couple whispered threats were issued….a couple whispered bribes were offered. But he was past that stuff – it was meaningless. This was a situation beyond my limited parenting skills and experience.
ARRRRRGH!!!! He was acting like such a five-year-old!!!
Oh…wait. He was acting like a five-year-old. A perfectly healthy, normal, precocious, sometimes difficult, sometimes ornery, extremely active, potty humor-loving, five-year-old – which is exactly what I dreamt of as I sat next to him in the PICU 4 and a half years ago and watched his monitors and wished for him to open his eyes. He is the picture of success.
So here’s our page and video (which totally outs Pip’s identity but I’m gonna pretend not to notice) filmed mere minutes after Pip and Bunny were escorted from the room. I was so frazzled and exhausted. Watch me stutter and roll my eyes up to try to get words to form in my brain and exit my mouth. Enjoy the cuts that occurred after I, on two separate occasions, suddenly turned and stared silently out the window mid-sentence. Note that it had been at least 24 hours since I had brushed my hair.
A normal five-year-old boy can absolutely melt your brain sometimes, you guys. And, at minute 3:12 in the video, I think I realized that I wouldn’t have it any other way.
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