Additional Needs

Same Old Story

Posted by Jennifer Arnold on 30th July 2020 Additional Needs, Advice & Support, Disabilities

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My daughter Lilly had an appointment with her new pediatrician the other day, and what would typically be a 10-minute appointment took twice as long because I had to explain what exactly her diagnosis was.

I should say “our diagnosis” because both of us, as well as my youngest son, have a very rare genetic condition called Oto Palatal Digital Syndrome. It affects less than 1 out of every 100,000 people.

Because of this, I usually need to tell the same lengthy story to every new doctor or clinician we see, because we are always the first (and most likely the only) people they will see with this condition in their career.

Most of the time, I don’t mind. I love educating people, and what mom doesn’t like talking about her kids?

There are some times, however, when I start to feel like a broken record, such as during panel appointments, where we see a revolving door of clinicians and have to tell the same old story multiple times, to numerous people, for hours. When you have to give a detailed medical history for the 6^th time, after waiting in a small exam room with two kids who are just over it and want to go home, it gets a little weary.

Sometimes I’m not in the mood to educate people, such as the many times I’ve had to bring one of the kids to the emergency room for one reason or another. It’s pretty much guaranteed that whatever doctor we see will have never heard of OPD.

After a couple of late-night  E.R visits (because of course, that’s when most of our emergencies happen), and trying to give a crash course in “OPD 101” while sleep-deprived, frazzled and worried,  I started printing off information about our condition and handing it to whatever doctor we were assigned to.  That way, they could get accurate information, and I could focus on my kid.

As the kids get older, their stories get longer and more complicated. As a parent of children with multiple medical issues and diagnosis, it’s hard when you feel like you have to be on “educate mode” all the time, especially if you’re feeling like a hot mess at the moment. Still, I will always do the best I can to advocate for my kids and enlighten others no matter where I happen to be.