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The 'What Ifs' I Worry About for My Daughter With EDS

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When we found out we were pregnant with our daughter, I told my husband I was looking forward to picking out clothes, and headbands and all the fun little girl things with her. I never thought that instead, it’d be picking out patterns for her AFO’s, figuring out what leggings fit best under her knee braces, or fabric for her wheelchair blanket. Safe to say, our world was turned a bit upside down when she was born. She was born presumably healthy, despite her toes touching her shins and being a very “floppy” baby. We knew different, Ehlers-Danlos syndrome runs in the family.

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

She was diagnosed with Ehlers-Danlos when she was about 1, after she started dislocating joints. She’s 5 now and is an energetic, spunky little girl who lets nothing ever stop her. As I was packing up her emergency bag tonight to take with to a play date tomorrow, it got me thinking… her biggest concern about her health right now? Can her medical equipment come in pink? And let me tell you, she was one upset little girl when she found out her walker only comes in orange or black. Her wheelchair is pink, her adaptive stroller is pink, her knee and wrist splints are all pink. Her AFO’s? Kitty print, with pink straps of course.

But it’s different for her dad and I. For us, it’s always, what’s next? And what if? And how bad this time? When I’m out doing errands in the morning and I hear my husband’s ringer on my phone, my heart skips a beat, I freeze right in my tracks and scramble to answer my phone as fast as possible. Because what if? It’s usually him just asking where something is, or if I can pick something up. But my mind always goes to, what if she dislocated her knee again? What if she has another migraine and can’t walk? What if she’s fainted again? Did she get hurt and need stitches again? Or worse. I know it’s the same for my husband when I call him on his way to work to ask where something is. I can hear the sigh of relief from him when my first words are, “She’s fine.”

It wasn’t always like this, it got a lot worse once the chronic migraines started. This past May my son woke me up, “Mommy sissy puked in her sleep and won’t wake up.” Absolutely the most terrifying thing ever for me to wake up to. When she finally did wake up, she couldn’t walk and could hardly talk and had to be rushed to the ER. A month or so later, after 13 days of complaining of head pain, random vomiting, fainting, on and off being unable to walk, and not talking very well, she was diagnosed with chronic migraines.

So now it’s always, when’s the next severe migraine? Her daddy and I both panic whenever she tells us, “I’m tired, can I just lay in your bed?” or “My belly hurts, can I have my belly medicine?” Those are usually the first red flags that another migraine is on it’s way. So it’s always, how bad is it going to be this time? Does she just need to sleep it off and be fine in the morning? Or are we going to end up back in the ER again with her unable to walk and fainting because it’s so bad.

Her poor brother too, he’s only a year older and has picked up on everything. Every time we go to a park it’s, “I’ll keep an eye on sissy and yell for you if she falls.” Or sometimes she’ll be climbing on something a bit higher than normal and we’ll hear, “Sissy, be careful! Don’t want stitches again!” Whenever they go to bed and he knows she doesn’t feel good, “I’ll wake you up if sissy gets sick mommy.” May not seem like it, but that’s a lot of responsibility for a 6-year-old to put on himself!

Despite everything that goes on though, she doesn’t let it stop her. It may slow her down, but it never stops her. One of her favorite things to do when we’re out doing errands is to spin in her wheelchair, or chase her brother and try to run him down. We take and deal with the bad days as they come, cherish the good days and be thankful for every day we are given, because we never know… what if?

Originally published: October 10, 2018
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