A letter to my daughter

...on her seventh birthday

Dear Em,

You turn seven today. Seven! I can hardly believe it.

Each year, when I sit down to reflect and write you this letter, you surprise me by adding whole new layers to who you are.

This year, I am proud of how you’ve been learning to communicate with us. Even though you don’t speak with your voice, you’ve been showing us so much of your personality through your PODD book. You’ve surprised me with how quickly you’ve learned the system of words and symbols in the big flipbook. It’s been amazing seeing you get more adept at sharing what you’re thinking and feeling.

When we’re scanning your book together, we go word by word, watching closely as you tell us what you want to say. When it’s not the right one, you move your head “side, side, no.” If it’s the one you want, you move your head “up, down, yes.” Once you choose a word, we check to make sure it’s what you meant by asking, “Oops, mistake?” If you say no, we ask if you have “another word” to say. If that’s a yes, we start scanning again. And if it’s a no, we say, “That’s all you have to say about that.”

And Em, what you have to say is amazing.

Sure, a lot of the time you say, I want → video, which means you want to watch one of two different Raffi concerts from the 80s, or one of roughly six Sesame Street episodes you like. But there have been many funny and heartwarming moments with your communication, too.

One of my favorites was when Grandma Rita was reading a book to you, and you said: I like this → good job → another word → I want → music. In other words, you were saying, “Good job reading, Grandma, but I’m done with it and I want my music now.” That moment still makes me smile—not just because it was funny, but because it was so you. Clear. Honest. And Kind. You knew what you wanted to say, and you said it.

Of course, this year wasn’t all great. Just as the new year began, we were back in the hospital. You caught RSV, which turned into pneumonia, and you needed oxygen support to help your body recover. You and I spent New Year’s Eve riding down to San Francisco in an ambulance. Over the next few days, your mom and I traded off overnight shifts, holding your hand, keeping an eye on your blood oxygen levels, suctioning stuff out of your mouth and nose to help you breathe, doing our best to keep you comfortable and calm. It was tough in the hospital, and even when we got home. It felt like we lost most of January. But you made it through, like you always do, with strength most people can’t begin to muster.

Later this year, there will be some surgeries ahead. We’re still working out the details, but I want you to know that we’re cautiously optimistic. We’ve been talking with your amazing doctors, asking questions, and gathering information. While there are no guarantees, we’re hopeful that the procedures might reduce, or even take away, the dystonic twisting that must be so painful and frustrating for you. I can’t promise anything, but I can promise this: we’ll be by your side every step of the way.

You are so full of light, Em. So funny, so curious, so attuned to the world around you. Watching you grow, learn, and share more of yourself with us this year has been a gift. I’m excited to watch your vocabulary, opinions, questions, and feelings grow over the coming years.

And that’s all I have to say about that.

Love you,

Your proud dad

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