Being a medical mom is like being in a special club of parents that you love, but wish you weren’t a part of. Since our medical journey began when my little Charlotte was just two years old and started complaining of back pain, I have gone back and forth about whether to share her story from my point of view or whether to stay radio silent and only tell our close friends and family when the need was there. I have chosen, as her mom and the person who will always advocate on her behalf, that I would be doing her an injustice to stay silent and I hope one day she will understand why.
My 7 year old daughter has a condition called Ehlers-Danlos Syndrome. It is a rare genetic condition (but actually not that rare…. we have met so many people who also live with EDS) that has many many mannnny different symptoms and presentations. So many, in fact, that the adults with this condition refer to the group as “zebras” because no two people are alike when it comes to EDS. Ehlers-Danlos Syndrome is a malfunction of the collagen in your muscles. You need collagen to hold everything together — so that your fingers bend, but don’t bend so much that you can’t hold a pencil. You need collagen in your joints to provide stability. You need collagen in your digestive tract, heart, lungs and every other organ to ensure that your body can withstand the stress of high blood pressure and constipation. You need collagen in your skin so that when you take off a band-aid, you have resistance and your skin doesn’t tear apart. Collagen is important and its also not able to be synthetically produced, in spite of what Planet Organic tells you.
But see, if you look at my baby girl playing in the school yard you would never know how much she struggles. You would never know how much energy it takes to hold her little ribs together to breathe. Or how hard it is to sit in a conventional chair all day and hold your head up. You would never know that she is so tired by the end of the week that we often spend both Saturday and Sunday resting so that she can come back to school on Monday. You would never know by looking at her play that she needs a wheelchair as a supportive chair in the classroom, because if she doesn’t have the customized support she can’t absorb or learn anything after 11am.
So why do I share her story? Its not to get attention. Actually, quite the opposite. I would love to melt into society and never have another person ask me why she is so small, why she has a wheelchair when she can walk, or why she wears braces on her hands. I would love that more than you will ever know. I don’t share our story to promote a goFundMe account — we are thankfully in a position to be able to support her through our public healthcare system and my husband’s generous benefit plan. We don’t need anything— truly— we are blessed with so much. What I do ask when we share our story is to consider the mom on the street who you don’t know and have never met — maybe she is having a really hard day. Maybe she has been told by the 150th doctor in 3 years that her child is struggling for unknown reasons and there is nothing they can do to help. Maybe when you see the sweet and witty 7 year old who looks like she is 4 or maybe 5, it is not the right time to comment on her size or stature. Most of all, I hope that by sharing my story, it starts a conversation with your own kids that everyone has strengths and challenges and just because you don’t understand something, doesn’t mean its not real.
Ehlers- Danlos Syndrome— look it up. Learn about rare illnesses that your children’s friends live with. Consider, if you are wondering what is the “appropriate” amount of information to share on social media about your family’s life, that other people share with mindfulness too.
That’s all for tonight. February 28th is Rare Disease Day. I am a mom of a child with a rare disease and I will never stop fighting for more support for her.
