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To My Daughter With Ehlers-Danlos Syndrome

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On the day you were born, your feet were all twisted and turning in and your toes were touching your shins. You screamed when the doctors examined you, stretching out your feet and examining your legs. They reassured us you were fine and that your feet would straighten out as you grew and started to crawl. We knew different. 

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

You see, your mama has Ehlers-Danlos syndrome (EDS), and we thought from day one that you did, too. We argued with countless doctors and specialists about it, but when you were about 1 and a half, we finally found a doctor who agreed that you were more than just a very bendy baby. You have Ehlers-Danlos syndrome, too.

I remember when you were only 1 and starting to crawl that you did an army crawl because you couldn’t get your feet under you to push forward. One day you were playing with your brother who accidentally shut your fingers in the dresser drawer. You tried pulling your little fingers out and dislocated two of them. That was your first dislocation. Then there was the shoulder when someone picked you up incorrectly. Then the other shoulder when you rolled off the couch falling all of six inches onto a thick soft pillow. Then your wrist, a couple more fingers, a shoulder again, your knees and so on. 

You’re now 3 and know a life of chronic pain, dislocations, tiredness, countless doctor appointments, ER trips and many, many tears. But again, you’re only 3 and have no idea just how sick you are. Having to wear braces is just your normal. You love that you get to go play with Mrs. Maria once a week, but you have no idea that she’s an occupational therapist or what that title even means. You’re on a first-name basis with your doctors and specialists. You love your orthotist and the silly games he plays with you and the animals on the wall in his room.

It breaks my heart knowing that someday Ehlers-Danlos syndrome will try to limit you. That there’s a good chance you’ll develop other conditions like postural orthostatic tachycardia syndrome (POTS) or gastroparesis that are common with EDS. That you won’t be able to play like your friends do, or worse yet, that people sometimes just suck and will make fun of you for being different.

Over time you may require hospital stays and surgeries, countless braces, years of physical and occupational therapy and even a wheelchair at some point. 

But for now, I remind myself that you’re only 3 (or 3 and a half as you like to remind me so often.) You have no idea just how sick you are, and you have absolutely no fear. I love your laugh while you dance on the edge at the top of the rock wall that you just climbed, even if it makes my heart skip a beat in fear. Your little smirk as you turn and take off running, and I count how far you get before falling this time. Your “Mommy, I did it!” After you do something you couldn’t do before you had your leg braces. You have an incredible love for life, and your giggle is beyond contagious. 

As you grow older and these challenges become more difficult, just remember, baby, you will always have us. Your daddy may not be able to stomach our joint dislocations, but he’s your biggest fan. Your big brother has been so protective of you from the day we brought you home from the hospital. And your mama — your biggest supporter — will always be there for you. I know you. You won’t let Ehlers-Danlos syndrome win. 


Originally published: October 24, 2016
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