Discover more from Just Enough to Get Me in Trouble
A letter to my daughter
...on her fourth birthday
Last year, I wrote a letter to my daughter Em on her third birthday, although it technically wasn’t published exactly on her birthday. Today, I’m continuing the tradition, but this year it is on her exact birthday.
A bit of context for newer subscribers. Em has severe cerebral palsy (CP), which is a muscle movement disorder. In her case, it means she’s unable to walk, talk, and even crawl. She also gets most of her calories via a feeding tube attached to her belly.
Okay, here goes.
Today is your fourth birthday.
As you grow up, you’ll get more and more excited about this day. If you’re anything like your big sister, you’ll anticipate and plan for its arrival months ahead of time. As you get older, you’ll get less excited about yet another year passing. But you’ll learn to appreciate birthdays as an annual reminder to reflect on your life.
I’m proud of how far you’ve come since last year.
You’re eating more food by mouth than I thought you would be able to at your age. You’re more expressive and engaged with the world around you. And you’re even branching out and listening to new songs—although you still have your favorites, of course.
This year hasn’t been without its challenges, though.
There was an unexpected rare sleep-related seizure diagnosis, which has meant more regular hospital stays. I’m still amazed at how you don’t cry when the nurses place your IV or when the tech puts the EEG leads on your head. The diagnosis has brought new medications and new dosages along with it. I hope they help your brain heal and bring you some relief.
We pulled you out of preschool as COVID cases started to spike. It was just too dangerous for you considering your history of respiratory issues. Thankfully, we’ve somehow managed to avoid COVID thus far. We’re hopeful that we will be able to get you a vaccine soon and you can go back to your school in the Fall. It’s important to us that you’re able to learn and make friends just like a typical kid would.
Recently, I read a piece from Kris Burbank who writes a newsletter called Another Normal. She’s a disability advocate and parent to an adult son who has CP like you do. In the piece, she shared a link to a documentary short that was featured in a digital edition of The New York Times.
It’s the story of a young man named Sam Habib. The film was co-produced by Sam and his father Dan Habib. It was deeply moving, but also difficult to watch. Sam is a smart, curious, and motivated person. Yet he can get frustrated with his limitations, uncontrollable body movements, and how he’s perceived by other people.
It was a glimpse into what our future might look like.
I cringed watching Sam’s awkward interaction with a woman at the airport who kept talking to him like a child, despite him being a 20-year-old man and his father pleading with her not to. I got choked up listening to Sam struggle to dictate a question to his dad so it could be loaded into a speech device for an upcoming interview. I felt encouraged hearing Sam talk about how his deep brain stimulation surgery—which we’ve talked about with your neurologist—has helped him feel more comfortable in his body.
But mostly, the film made me realize how difficult our life can be. I watched the film a week ago and I still think about it daily. For several days, I felt off—not depressed, really, just off. I realize now that it was my grief coming back to the surface—my grief about how your traumatic birth sent our lives down a different path than I envisioned when you were in your mom’s belly.
At four years old, I don’t expect you to understand the film. Maybe we’ll watch it together eventually someday. I’d like that, but I won’t make you watch it. I’ll share it here in case you want to, if and when you’re ready.
For my subscribers, I highly recommend watching (and sharing) the video.
Like last year, as I write this letter, I can see you sleeping soundly on the video monitor across the room. Yes, the new monitor mama had to buy because I dropped the old one.
Soon, I’ll gather up your meds, quietly sneak into your room, and attempt to give them to you without waking you up. I’ll stop for a moment to look down and notice how peaceful you are when you’re asleep. And I’ll feel a strange mix of pride and hope and sadness all at once—a feeling all parents are familiar with as they watch their children grow up too quickly.
Happy birthday, Em. Keep working hard and making me smile each day.
Your proud dad
If you liked this piece, could you please let me know by clicking the heart button below?