We recently spent a day with a great camera crew trying to capture Talia’s story and the goal of CureCMT4J. When the cameras left, Jocelyn and I were exhausted. We were both a little quiet, too. Introspective. Both of us haunted, I think, in a way that I couldn’t quite identify until days later. The video shoot was a wonderful opportunity to share our story with a broader audience, but the stakes were daunting: two and ½ minutes of video to try and save your child’s life.
Did we say the right thing? Were we compelling enough? If she had parents who were more dramatic or articulate would they have been able make their case in 2 and ½ minutes?
On the one hand, you don’t want to be melodramatic or exploit the situation. On the other hand, shouldn’t we do everything we possibly could to tell her story? What if the words left unsaid could have made the difference? Two years from now will I wish I’d done more?
Neither of us slept well that night.
One of the questions that I don’t feel I answered well should have been one of the easiest.
Everyone says Talia has a great personality and is funny. Can you tell us about that?
She is a funny kid and she has a great sense of humor. She makes me laugh all the time, but it’s also hard to explain. Switching gears from talking about your daughter’s fatal illness to how funny she is — it’s a tough transition and I stammered through a lame answer.
So, because I didn’t do it justice then, with the cameras rolling, here are a few of the things that Talia does that make me laugh:
Ever since she was really young — before she was saying full sentences — she realized through observation that I had trouble leaving the house. As she sat at the kitchen table eating her breakfast, I would scramble around the house getting ready for work, would kiss her goodbye, and dash out the door. Moments later I’d dash back in, grab something else and run back out again. Repeat.
As amusing as she found this, she eventually took pity on me and she began shouting things out before I left the door. It took me a couple of days before I even realized that she was talking to me.
“Keys!”
”Coffee!”
”Lunch!”
”Glasses!”
”Bookcase!” (Briefcase doesn’t make any sense to her. What’s a brief? Hence, “bookcase”).
She’s kept that up every morning even after moving to a new house and a new door to dash out. Even if she’s stuck in bed in another room, she’ll start shouting out things as I prepare to leave.
“Dad!..keys…coffee…lunch…”
This makes me laugh, still. Here was this young kid, even before she was articulate, shouting out items that she thought I might forget, trying to help me start my day on the right foot.
Another Taliaism: whenever I come home from a workout or come in from a run (admittedly, a rarity these days), she breaks into a chorus of, “Are you sweaty, daddy? Dad-oh, Dad-oh, Dad-ohhhh?” at the top of her lungs. Where does the Dad-oh, dad-oh, dad-oh come from? I have no idea. She’s like my own little scatman cheering section.
If I don’t answer, and even when I do, she’ll repeat ad nauseum until she tuckers herself out. This takes a remarkably long time. One of the easiest ways to cut it short is to go over and give her a big sweaty hug. Which she pretends to hate. Or perhaps she really does hate this.
She gets me back though with another morning routine. When it’s time to kiss her goodbye she strategically takes a bite of her cereal or yogurt and when I zoom in for a peck on her cheek she turns at the last minute and plants a wet kiss full of breakfast on my lips. The best part of this? She was doing it for weeks before I realized it was on purpose. I finally caught on one morning when I realized she’d load up right before our goodbye. And she was definitely watching post-kiss to see if I wiped off her wet one with the back of my hand. Once she realized I was on to her, she started letting out a triumphant “Gotcha!” whenever she got me with a good one.
The greatest thing about Talia’s humor? It’s never mean. Ever. In these days of burns and slams and digs, it is refreshing to be with someone who can just make you laugh without resorting to sarcasm or biting humor. Sure, she’ll tease — she loves to bust my chops — but it is so gentle and sweet at its heart. It’s clear she just wants to connect and engage.
A final one. Whenever we’re working on getting dressed and braced up she gets bored and starts asking for my phone, which I decline. So she starts to argue, cajole, bargain, and charm. She is particularly gifted at the latter while some of her arguments, albeit effective, rely on nothing resembling reason. Her final go-to move, however, is one of her best and I have to confess to falling for it more than once. It goes something like this:
Can I have your phone?
No.
Please, dad?
No.
Please, dad, just for a minute?
No.
Please, dad, can I have your phone?
No.
Puhleeze
No.
I’ll give you a magic quarter.
No. Wait, a what?
I’ll give you a magic quarter!
A magic quarter? Okay. For a magic quarter.
She reaches forward a hand and hands me…nothing.
Now, maybe it’s because I’m old or impure of heart or just because I’m too cynical, but I swear there is no magic quarter. I can’t see it and I can’t feel it and I really don’t think there is anything there. But a deal is a deal, so I give her my phone.
These are some of the ways my daughter is funny. If you meet her sometime, maybe you’ll agree. But you kind of have to pay attention. And listen. And you might not get it at first. You have to kinda spend some time with her and she’s gotta have time to figure you out. But then she can be pretty funny. Trust me.
Meanwhile, I’m still waiting for my magic quarter.
A special thanks to Randy Hackett, Matt Gelineau, and Michael Gilday, a great crew to work with on making a video.
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