As you may know, I’ve been in the hospital all week with my youngest, Luka (pictured here, intently painting a wooden snake that one of the art volunteers brought in yesterday. Luka has a seizure disorder, and we’re in here getting some multi-day testing done so his neuro doc can determine which meds to put him on and what the medical plan for school will be.

So, as you also may recall, earlier this summer I wrote a piece about Constance Mark’s marvelous documentary, Being Elmo, which is actually about how a little boy with a dream to make puppets grew up to become Kevin Clash, voice of Elmo and one of the most famous Muppeteers ever. While that film shows Kevin’s journey into becoming Elmo, even more than that you really get a glimpse into who Kevin is as a person, and if you haven’t seen this film, let me tell you, it’s pretty darn special.

Shortly after we saw Being Elmo at SIFF and got our picture taken with Elmo and Kevin, Luka went into the hospital for his first stay. Some folks associated with the film saw my blog post about that, and since they knew who I was since I’d previously written about the film, it came to Kevin’s attention that Luka was dealing with some medical crap and I heard from Connie that Kevin wanted to do something to help. But I also knew they’d been touring a lot in support of the film, so I figured, whatever. If he’s able to do something he will, and if not, cool.

Then we had to go in for this longer stay, which has mostly been boring until this morning, when Luka had to undergo a fairly traumatic medical procedure that exhausted both of us, and involved me yelling at a bitchy, unhelpful nurse to get the hell out, and at the poor food delivery person who kept trying to deliver our lunch right as my kiddo was writhing on the bed and screaming that the EEG tech was killing him. The nurse really ticked me off. We’d made it through the first couple electrodes, and Luka was crying and asking if we’re almost done and she says (I kid you not), “Done? We’ve just barely even gotten started here.” This earned her the Look of Death from me, and I took her aside and hissed, “You are NOT being helpful. Leave now.” Jesus. If you don’t know how to deal with little kids and be sensitive to their hurts and their fears, you bloody well shouldn’t be working in pediatrics. Or perhaps not in nursing, period.

Now the EEG tech is actually great, he’s taken time to hang with Luka and bond, and Luka pretty much trusts him. And he’d shown me on my own body exactly what he had to do, which involved squirting conductive gel down into several of the electrodes superglued to Luka’s head that were no longer conducting or recording, so I knew that while it was uncomfortable, especially given his sensory sensitivity issues, it was not actually killing him. It had to be done, but Luka was hyperventilating and hysterical, and I had to just stay calm but firm and help him get through it, and between the great EEG guy and me (minus Nurse Not-So-Helpful), we pulled it off somehow and got it done.

And then I had to slip into the bathroom for a moment where Luka couldn’t see me, and just have an outburst of bursting into tears over having to physically hold him down while this was done, while he was screaming that we were killing him. Thank goodness our EEG guy is patient and sweet because if he hadn’t been I might have punched him in my own distress. I know parents of kids with terminal illnesses deal with this and so much more, and you get through it somehow, but gosh almighty, it’s a devastating thing to deal with.

So in other words, shite morning, and by the end of it Luka and I were just exhausted and upset. And then …

… and then my cell phone rang with a call I was expecting from an voice mail earlier this morning. Elmo was calling to talk to Luka. I put Luka on that phone, and immediately, he burst out into an ear-to-ear grin. “Mom, Elmo’s on the phone, the real actual Elmo!” he whispered excitedly. Luka and Elmo had a nice little chat, Luka told Elmo all about being in the hospital, and Elmo said some Elmo-ish reassuring things, and Luka listened seriously, occasionally saying, “Yeah, okay Elmo. I will.” Elmo told Luka that Elmo is sending Luka a special surprise to our house and that Elmo hopes Luka feels better and that Elmo loves Luka very much.

Then Elmo said goodbye, Luka handed the phone over to me, and Kevin and I chatted a bit about Luka and I thanked him profusely for calling. And Luka, now, is calm and happy and smiling again. It was just a couple minutes out of Kevin Clash’s time, to do this thing for my son, but for Luka it was huger than huge that Elmo called him on his mom’s VERY OWN CELL PHONE! and talked to him and cared that he’d had a crap day. Those minutes that Kevin took out of very busy schedule to do this meant everything to a little boy who’s been brave and tough through this whole week, but who is still just a little boy who doesn’t want to be stuck in a hospital having needle-like syringes poked repeatedly into his already tender scalp.

I called Constance and asked her if it was okay to share this story here, because I know Kevin is modest and kind of shy guy and that he was doing this not for any publicity, but out of the goodness of his very big heart. I’m sharing this story here because so many of you have very sweetly emailed and called to ask how we’re doing, but more importantly, because I want people to know: This folks, is Kevin Clash. He is the real deal, a person with a heart as big as Big Bird. If the Grinch’s heart was two sizes too small, Kevin’s must be 100 times too big. And the love that is inside him, which comes out so eloquently through that little red puppet, filled my boy with love and warmth today, erased his tears, and put his beautiful smile right back on his face.

So thank you to Kevin, and to his assistant Kimi and Being Elmo director Constance Marks, for caring enough about Luka to facilitate this. Luka and I thank you, most sincerely, from the bottom of our hearts.

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