I am happy to report that MaryGrace is still seizure free!
[If you are not quite sure what I am referring to… here is the original post.]
This is month 3 on the medicine and she is in about the same state as she was last month.
Still a little crabby/sleepy and not walking.
She is trying really hard to stand alone and will attempt it a few times a day…
Most of the time she prefers to hold on to something.
Or be held…
Great-Grandma even got to help her practice a bit while we were in California.
We have a physical therapist working with her a few times a month. I have seen great improvement. One of the therapists suggestions was to get a shopping cart. (I think she is wearing a track in the floors around the house.) She loves it and doesn’t even realize she is practicing.
Alright… Here is the deal… I am 6 pictures in to this update and I feel like I am sugar coating everything.
(I feel like I am FaKebooking my post… if that is possible?)
The truth is… having a child with special needs is really hard.
It is hard on her, it’s hard on me, and it’s hard on our family.
It is super frustrating when she is screaming, crying, and clawing at your face for no reason and completely out of no where.
It is difficult to reassure the new child care worker that even though she has epilepsy she will be fine for the hour while I am in the next room… they tend to look at you like you are handing over baby Frankenstein.
It’s not contagious, she will not explode, just hold her/love her, and if you need to… just come get me.
It’s nerve-racking to live in fear that every shiver or twitch could actually be something more.
It’s scary to think about the what ifs…
So I surrender… daily.
When I am unable to pacify her… I surrender.
When I start to worry… I surrender.
When the explanation leaves the childcare worker in a blank stare… I surrender.
This journey is one that God chose for her and our family and we will certainly persevere but only after surrendering.
This sweet, (usually) joyful, (always) spunky little girl… has a purpose and I have no doubt that God has big plans for her.
So… to Him I surrender all.
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