A letter to my daughter

...on her sixth birthday

This is a continuation of an annual tradition since my daughter, Em’s, third birthday. If you’re curious, you can read the past ones here: third, fourth, and fifth.

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 cannot walk, talk, crawl, or eat by mouth.

I hope you enjoy reading it.

Dear Em,

Today is your sixth birthday.

You’ve had one of the biggest years of your life so far.

You’re almost done with your first year at BOOST, your awesome school that you’ll be attending for many years (don’t worry, you’ll be back for the Summer session soon). We bought a new fancy wheelchair accessible van you love riding in, which has a sweet ramp with cool LED lights lining the edges of it. You played in your first Miracle League baseball game. And you had bilateral hip surgery at the end of April.

The picture of you above might be the one I remember the most from this year. You had just spent about seven hours in surgery, yet you still smiled when Mama took your picture.

Of course, that picture only captured a moment in time. There were many other painful and trying moments during that hospital stay and later on at home.

You’ve gotten to know pain unlike any I’ve ever experienced.

I’ve been in awe of your strength and toughness since the day you were born. But even more so from this surgery that has left you with some metal hardware in your hips.

Mom and I try our best to explain what’s happening to you when it comes to medical situations, or really most of anything we’re doing. Remember the other day when that lady at the grocery store told me that I was really good with you? That’s because I was telling you all about the different foods we were buying and what part of the store where we would find them.

It’s tough to know how much you understand since you can’t form words and respond or ask questions. With medical stuff, I imagine it has to be confusing for you on some level too. I want you to know that we’re making these decisions, along with the help of your amazing medical team, to help you and make your life more comfortable in the long run. And we don’t make the decisions lightly.

I wish I could say this was the last procedure you’ll ever need, but I can’t, because it’s probably not—the doctor did say that those metal brackets will likely need to be removed in a year.

No matter what, I promise that mom and I will always advocate for you and ensure we’re only doing what’s necessary and helpful for you.

*

The other day, I was practicing golf at the driving range and there was a little boy probably around your age a few stalls to my left with his dad. He was asking question after question after question. I glanced over and caught the dad’s eye at one point, and he gave me a look that could only be interpreted as exasperation from having to answer his son’s questions over and over and over again.

I gave him a polite smile of acknowledgment, but it wasn’t genuine because I couldn’t really relate to him. All I could think about was how grateful he should be that his son could express himself in that way.

I know I’ve written about how you’re nonverbal many times before. I want you to know that it comes from a place of caring and love, not from a place of shame.

Your speech therapist at school recently shared a video of you attempting to say “more” and it made me feel choked up as I watched it. I felt so proud of you and grateful for your school and how they push you to improve a little bit each day.

You clearly have something to say. It’s okay if it takes you longer to learn how to do so. It’s okay if you get frustrated by the process. It’s okay that communication will look different for you than it does for most people.

The important thing is that you keep trying to get better. I know you will.

Maybe in the future, you’ll say, “Dad, will you please stop publishing these birthday letters?” I will stop right then and there, no questions asked.

But I’ll have lots of other questions for you. And I can’t wait to hear your answers.

*

Just as in all the previous years I’ve written this letter, I can peak over my laptop screen and see you peacefully sleeping on the video monitor.

This year, I’m worried that our three rambunctious foster kittens—Mozart, Beethoven, and Bach—will wake you up as they play fight with each other, so I keep glancing at the screen to see if you’re moving.

In an hour or so, I’ll grab fewer meds than I did this time last year, and give them to you through your feeding tube while you sleep. It’s something you can count on me doing for you no matter what.

I’m grateful that you’re such an incredible kid. You have every right and reason to be angry and sad about the cards life has dealt you, yet you’re happy and mellow most of the time.

You’re inspiring and I’m really proud of you.

Happy birthday, Em.

Love you,

Your dad

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