The rare disease club

Even though we just got Ava’s diagnosis last month, as early as last July I found myself thinking of Ava as having special needs that were different from most babies. That’s when I realized that the name “special needs child” really was pretty apt. It’s not that I started putting a label on her. It just was. Ava was a child with special needs, even if, at the time, it seemed to be mainly her food allergies and feeding problems. 
I also remember the night in early September when I came home from a mommy group and just cried because I knew something was wrong with Ava. While I am very grateful for my mom friends who have healthy kids, and I keep one foot in that circle because of Elijah, it was then I began finding my usual mommy blogs and conversations less relevant and started listening for people walking roads more like our own.
One of the first parents I began following at that time was a brave single mom whose Eva was just three weeks older than my Ava and was walking through a tough diagnosis of CHARGE syndrome. I remember her celebrating Eva holding her head up without crying and it was around the same time Ava finally did the same thing. Only a parent who’s familiar with low muscle tone (and there are actually a lot of you out there, I’ve now learned) can probably appreciate how great that little milestone feels. 
When we got Ava’s diagnosis, this mom’s words to me were some of the most helpful I received…because from halfway around the world, she understood. 
On Tuesday Eva passed away suddenly. I am so sad about this little girl who I’ve never met. I kind of felt our little ones were peers in a way and I was anticipating them growing through their struggles at the same time. I am brokenhearted for her mum who’s fought so hard and loved this little girl so fully in her 10 months of life. Thank you, Tessa, for sharing your struggles and victories with the rest of us. I’ve learned from you and found courage in your ability to celebrate the little things. This gets to be just one part—and I believe there will be many parts—of Eva’s legacy that lives on. 
Like Angelman Syndrome, CHARGE was a diagnosis I’d not heard of until this past year. I do feel as though I’ve joined a club in which no one really desired membership…and yet so many people step up to help one another. Rare Disease Day 2015 (yes, this is a thing) is this Saturday, February 28th, and stands to support families who deal with a long list of unique syndromes and disorders. 
If you’re interested, you can also check out these T-shirts made by a mom community we’re a part of to support the CHARGE Foundation in Eva’s honor. Thanks to all of you who rally around special needs parents, whether you can fully understand the struggles or not. 

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