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A letter to my daughter
...on her fifth birthday
Some context for newer subscribers. Em has severe cerebral palsy (CP), a muscle movement disorder. CP manifests along a broad spectrum of disability. In her case, it means she is unable to walk, talk, crawl, or eat by mouth.
Tomorrow is your fifth birthday.
I’m not sure if you realize this quite yet, but your smile can do some serious damage.
It can open doors for you.
It can get you the things you want.
But it can also help you to be understood.
You’re at the beginning of a long, arduous journey of learning how to communicate with the people in your life, without the ability to form words. Sure there are devices you’re learning to use, but those require other complex muscle movements. And they don’t always work like they’re supposed to.
Yet you’re figuring out that your infectious smile can work just as well. For the time being, at least. As you grow up, your wants and needs will become more complex. It will be challenging and you’ll need to work hard to be heard in the way you want to be heard. I want you to know that I will work just as hard to understand you too.
Your mom took the picture above while we were visiting her Uncle Mark’s cabin last month. It might be my favorite pic of you yet. It not only shows your beautiful smile in front of the incredible backdrop of the Mendocino County hills, but it also shows you with zero head support—something I couldn’t fathom happening last year. I’ve been impressed with your progress and strength as we’ve tapered down some of your meds. I’m sure it can get painful—and frustrating—at times when your muscles get tight and don’t cooperate like you want them to. I’m proud of how hard you’ve worked on it.
Speaking of school, you just graduated from preschool the other day! Don’t worry, you’ll be going back for a summer school session soon here. I know how much you love your school. I can only imagine how boring staying at home must be sometimes in comparison. We can’t compete with all the fun songs and games, and, of course, all your friends. Not to mention your amazing teacher, aides, and therapists. They’ve pushed you to do things we never thought possible at your age. But I also want to recognize that you’re the one doing those things. Things like trying to communicate your needs, using the bathroom like a big girl, holding your head up on your own in your chair, and improving in your walker.
In the Fall, you’ll be attending a new school. It’s one that your mom and I are excited about. We know you’ll love your new teacher and you’ll even have your very own personal aide.
You’ll also get to ride in a fancy van from our house each morning, instead of driving with me or Mom. I think the van might look similar to the brand-new one we bought last week. I’m so glad you’ve been enjoying our new ride with the cool ramp. It’s been fun to drive you to school in it this past week. I’m sure we’re going to put a lot of miles on it in the coming years.
I’ll be honest, though, I’m going to miss our morning drives.
I love peeking up at the rearview mirror and watching you laugh at the parts of the drive you recognize, like when we pass the tall walls and when we turn onto the street to get to your school.
I love that you (sometimes) let me listen to one of my podcasts about golf or writing or some other topic you probably find boring.
I love when you listen to me tell you a story.
I love that it’s time for just you and me.
Just like last year and the year before, as I write this letter I can glance to my right and see you sleeping soundly on the video monitor. I call it watching Em TV.
In a little while, I’ll close my laptop, gather up your nighttime meds, and sneak into your room to give them to you through your feeding tube while you (hopefully) stay asleep. In a week, I’ll be giving you one less medication at this time of night. It’s something I’ll do for you for as long as you need the meds to help you be more comfortable and sleep through the night.
Because I’ll always be here and I’ll do anything for you.
I can’t wait to see how much more progress you make this year.
Happy birthday, Em.
Your proud dad
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