I took MaryGrace to a follow up appointment last month at Children’s Hospital Colorado and I posted this photo on Instagram as we waited to be called back.
When I posted this picture we were playing, snacking, and waiting…
When we were called back we were again able to meet with one of our nations finest pediatric neurologists.
He was/is wonderful.
He is someone who is truly living out his calling and it is a beautiful thing to witness.
I really wish I didn’t get to witness it, but I do and it is.
This man is gentle, caring, loving, concerned, and compassionate.
He is exactly the man that you want sitting across from you when someone has to tell you your baby is less than perfect.
We concluded that we should stay the course, continue with the current dosage, keep an eye on her speech development, and continue with the physical therapy.
Then I started asking him questions about what the future looked like for my sweet girl.
I almost wish I wouldn’t have…
To summarize the conversation I asked a bunch of questions about the future steps, the meds, and the what ifs…
Remember how I told you that 2 out of 3 kids out grow epilepsy…?
Well, for us not so number friendly folks… that apparently means means that 1/3 of people don’t outgrow epilepsy.
They never get better.
They live with epilepsy for-ever.
I was heartbroken and dumbfounded all at once.
The information was given to me at our first appointment and I never saw it.
Maybe I am/was naive, maybe I am too optimistic, or maybe I was overwhelmed by too much information to even wrap my brain around the fact that 1/3 OF KIDS DON’T GET BETTER.
Did you digest what those words mean? 1 in 3 three kids with epilepsy never outgrow it, they have it forever.
This fact hit me like a ton of bricks.
What if my daughter is the 1 in 3 that don’t outgrow it, instead of one of the 2 in 3 that do outgrow it?
What if my daughter has epilepsy forever?
What if she has seizures in front of her friends?
Will she be embarrassed?
Will they befriend her anyway?
What if she can never drive a car?
Play a sport?
Or hold a “normal” job?
What if she is always different?
Then I started asking the impossible questions…
What did I do wrong?
What did she ever do to deserve a life full of meds and setbacks?
I left that appointment with a lot less optimism than I had arrived with…
Somehow 2 out of 3 seemed so much brighter than 1 out of 3.
(I realize that sounds ridiculous…)
So once again, I beg of you… will you please pray for my girl?
I want her to have a healthy, happy future full of endless options and opportunities.
Please, please pray.
If the odds for your child were 2 out of 3… how many people would you ask to pray on your child’s behalf?
How many times would ask the creator of the universe to heal your child?
Will you do that for me?
If you share this post, will you please hashtag it with #PrayersForMaryGrace? Someday I want to show her how very special she is and how many people are/were praying for her.
From the bottom of my heart,
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