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To My Daughter With Ehlers-Danlos Syndrome, as You Grow Up

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Oh, dear daughter of mine. You were only 3 when I wrote my last letter to you, and now you’re 7 already. It’s hard for me to believe how old you are already. I swear I turned my back for one second and you magically grew up. So much has changed since my last letter, and all so much for the better. You’ve come so far! Farther than any of us had ever expected.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

You’ve always been a strong little one. Maybe not always physically strong, but from day one, Daddy and I knew you’d never let anything or anyone stand in your way. You’ve always been so determined and always found a way to do something when someone told you that you would never be able do it. It still amazes me how many doctors and specialists you have proven wrong. You’re doing so many things we were told you most likely never would.

We weren’t sure what a childhood with Ehlers Danlos syndrome would look like for you. At 3, we knew it was a pretty miserable one at the time. But yet you persisted like the amazing little girl you are. You spent years in occupational, speech and physical therapy. You went through years of wearing leg braces and retraining your leg muscles how to work and how to hold your little body together. You did almost a year straight of physical therapy three times a week and you kicked butt at it! That’s more than a lot of adults could handle.

You’re 7 now and that still amazes me on its own. You’re doing everything we were told you probably wouldn’t. You’re walking, running and jumping, all without any braces at all! You haven’t touched your wheelchair in probably over a year either. You even learned to ride your bike with no training wheels! Going from the little girl who couldn’t even sit up on her own, to the one who now can ride her bike without training wheels, or even hands for that matter is just simply amazing to me.

You still have your bad days, of course. You still tire pretty easily when you overdo it, but that’s always to be expected with Ehlers Danlos Syndrome. You don’t dislocate your joints as often anymore, and when you do, you’ve either learned to relocate them yourself or tell someone how to do it for you. You’re learning your limits and when to take rests as needed.

It’s been close to a year since you graduated from all your therapies. It’s been an amazing year just getting to see you finally be a kid. At one point you had five appointments a week. While most kids were having fun playing with friends or at school, you were learning how to get through every day.

You’ve changed so much the last year and it’s been fun to watch. You still love pink, and kitties; I’m not sure if that’ll ever change. But you’ve started to love drawing, playing Pokemon cards with Daddy and playing video games with your brother. I’ve loved watching you find your passions and just enjoy being a kid.

We as parents often take so much for granted. At some point, we get caught up and stuck in the busy rush of life. Thank you for being my daily reminder to slow down and enjoy the little things, and for always being my little miracle. You have an incredible love for life, and your giggle is still beyond contagious.

Remember, baby, no matter where life may take you, you will always have us. Daddy who’s your biggest fan, your big brother who will always be your protector and your mama, your biggest supporter will always be there for you. I know you, baby. You haven’t and won’t let Ehlers Danlos syndrome win.

Originally published: September 21, 2020
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