The other day I was walking through the parking lot at Target screaming at my 2-year-old daughter to put on her sunglasses and her hat. She’s usually good about it… But for some reason, on this day, she was throwing a fit and kept tossing them off.
“AUDREY!!! Put your Minnie glasses on your face NOW! If you throw your hat off your head one more time you’re in big trouble!!”
As I’m doing this, two women are passing us in the parking lot. I overhear one say to the other, “Look at that woman forcing that poor little girl to wear those glasses. Appalling.”
I’m sure they thought I was some overbearing mother who thought her daughter looked cute in her little Minnie Mouse glasses and floppy hat.
Little do they know, Audrey has to wear those things. It’s medically necessary.
She has a very rare genetic condition called aniridia.
It affects her eyes. She has no iris so her eyes are always dilated. Hence the need for sunglasses and a hat whenever she’s outside.
So I wasn’t being a mean mommy forcing her daughter to wear her glasses and hat cause they’re cute… I was being a protective mommy doing it for her own good.
Aniridia also means Audrey is at greater risk of developing nearly every eye condition conceivable. And yes, it affects her vision.
And yes, it is very rare.
Only one out of every 70,000 babies is born with it.
That’s why today is so important to me… And to Audrey… And to everyone in our family.
February 28th is Rare Disease Day.
There are hundreds, if not thousands of rare diseases and conditions out there. Many of which we will never hear of in our lifetimes.
Believe me, I’d never heard of aniridia before Audrey’s 2 week doctor’s appointment. Now it’s something we deal with every day.
Even many doctors I go to have never heard of it.
There was one day I had to take Audrey to an urgent care for a massive ear infection. Audrey had a high fever and was feeling awful. The nurse asked about her medical history, so of course I mentioned her aniridia.
Before the doctor even saw us for the ear infection… I had another doctor come into our room and ask if I minded if he looked at Audrey’s eyes because he’d never seen aniridia before.
Mama Bear roared.
I said OF COURSE I “flipping” minded!! My daughter is massively sick and you want to study her for something completely unrelated?!?!
(P.S. – I didn’t say “flipping”!)
I guess we’re lucky in the whole scheme of things. When I first learned of Audrey’s diagnosis I thought the world was coming to an end. But now she’s your typical wild child toddler who just happens to have special eyes!
Her rare condition… Is our new normal.
And this is the case for so many families out there. It’s funny, you don’t realize how many people are dealing with a rare condition or a rare illness until you are dealing with it yourself.
Take a look around your facebook page… Or your twitter feed today…
Chances are you will see several people changing their profile picture to honor someone rare in their life.
I know I did!
There are 3 things I hope you take away from this post today:
#1 – Today is Rare Disease day… Spread the word.
#2 – Never judge another mommy. You never know what she’s dealing with and what the method is behind her madness. For example, that day at Target. The woman thought I was nuts… But I was only doing what I had to, in order to protect my baby.
#3 – Ask questions. Most families who are dealing with a rare condition WANT to talk about it. We want to raise awareness.
And chances are… The more we talk about these rare conditions… The less rare they’ll seem.
Remember… Alone we are rare – Together we are strong!