A letter to my daughter
...on her eighth birthday
Dear Em,
Today is your eighth birthday. I know you already know that because I heard that you talked about it throughout your speech therapy appointment the other day.
As I wrote to you last year, you had some surgeries coming up. Well, you handled them all like the incredibly tough girl you’ve always been. The two-part Deep Brain Stimulation (DBS) surgery was the one your mom and I were cautiously optimistic about. We were also quite nervous about it, although your awesome team at Stanford kept assuring us that the risks were low.
Isn’t Dr. O’Malley the best?
And can you believe that Dr. Buch, Dr. Mahaney, and their team were all wearing headphones to listen to your brain during the surgery? Isn’t that so cool?!
It has been almost six months since those back-to-back surgeries, and less than five months since we turned on your DBS device.
You have been sleeping way, way better, and you haven’t had a dystonic twisting episode for the past five days. I know we need to be mentally prepared that it still might take a while to get your DBS settings completely dialed in. But it’s also good to celebrate these small wins!
It also seems like you’re getting a little more comfortable in your body now. Just yesterday, you pedaled yourself in your trike at school. A few weeks ago, at your occupational therapy appointment, you picked up that spiky toy from my hand and then gently gave it back to me. That was a big deal! My favorite thing, though, has been hearing more of your cute giggles when you find something funny.
It wasn’t easy making the decision to put you through two more surgeries. Yet it’s a relief to already know that we made the right decision.
You’re continuing to do great learning to use your PODD book and figuring out how to express yourself in different ways, even though you’re nonverbal. I love hearing stories about all the sweet and funny things you say to your friends and the school staff at BOOST. You’re not afraid to say, “I don’t like this → Boring,” or express your needs and say, “I want → A hug.” Or like the time you tried to get clever when mom said you were “Chat words → All done” with your video and you said, “Let’s go → In the car,” because you know that sometimes you get to watch a video when we drive in our van. That was pretty “I like this → Clever/Smart” of you!
By the way, by this time next year, you might have a cool new device that will help you learn to communicate all on your own!
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As another year has gone by and I’m sitting on our same couch to write this letter while I can see you on the video monitor again, I’m feeling closer to being fully optimistic now than I ever have since the day you were born.
You’ve worked hard to recover from setbacks like getting pneumonia early last year, double hip surgery, and the DBS surgery. I’m excited to see you flourishing more than you’ve ever been able to lately. I would tell you to be optimistic about your future, too, but I think you’ve already got that covered.
Love you,
Your proud dad
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Happy happy birthday Em! You're such a special girl. And you know this, but you have THE BEST parents!!
Wow Lyle. So important to celebrate the big/small wins. Feeling the enormity of these shifts and milestones for you and your family. Hooray.