MaryGrace Update — I Want My Baby Back

Round 2 Month 2

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…

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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 rehashed the last episode of seizures and the discussed the latest side effects of the meds.

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.

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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.
(Who Knew?)

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.

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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…
Why her?
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.

Please share.

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?
For MaryGrace?

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,
Thank you.

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7 thoughts on “MaryGrace Update — I Want My Baby Back

  1. Always have little MG in our prayers here at the House of Hayden! Those “What If” thoughts can be devastating, try to keep your head clear of the what ifs. I know you know God’s plan is not always to be understood but it’s not always easy to accept. Here’s praying that she’s one of the two of three kids that outgrow this.

  2. Hello! I’m in the former Aspen Grove MOPS, and go to Mission Hills (I’ve cared for MG in the Barn – love her! 🙂 ) – and just want you to know I feel you sister. My daughter has brain issues she will have forever, we have a neurosurgeon at CHC who I deeply love an am thankful for, but at the same time wish I didn’t know, and I have my own list of “What If’s” I try really hard not to obsess over and always have to put back in God’s hands. One thing I hold tight to is God doesn’t do anything by accident and never waste’s a tears, there are no “What If’s” in the Bible, and he loves our baby girls more than we do – we gotta trust him. Praying for you guys!

    • Thank you Amy. It is comforting to know I’m not alone in my struggles. I know God has it all under control, I just wish I could ask him a few questions, ya know? Thank you also for loving on her in the barn. ☺️

  3. Hang in there Christen. MaryGrace is in the hands of an amazing and powerful God who thankfully isn’t bound by the medical worlds’ facts and statistics. He defies them. He defies them EVERY day, and in every way. He will hold her, carry her and see her through…and He’ll absolutely do the same with you. Just as MaryGrace is His little girl, don’t forget that YOU are His little girl too.

    You are in my daily conversations with the great I AM.
    t

  4. Your baby never left because her soul is very much intact and that is why we are on the earth. The unknown of her future is understandably scarey for parents, but she is going to amaze us in ways we can’t even imagine! Peace be with you all as you travel a path you didn’t plan for, but travel together in faith. Hugs.