MaryGrace Update

Month 3

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…

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Most of the time she prefers to hold on to something.

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Or be held…

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Great-Grandma even got to help her practice a bit while we were in California.

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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.

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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.

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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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Please note: I reserve the right to delete comments that are offensive or off-topic.

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5 thoughts on “MaryGrace Update

  1. Stay strong my dear and when you have to, cry it out. You can have moments of dispair but like the saying goes, just don’t set up camp there. I have no doubt in your ability to conquer all that comes across your path. You will not let yourself, your little girl or your family down…I believe in you!!!

  2. Keep it up! U guys are doing great with a difficult situation. Working with children like this after 4 years and even doing the child care taker at home for a short while disappoints me to see that they r scared to take care of her.. Especially with u just in the next room! Wish I was close to help.
    Love u guys

  3. Christen, i came across your post today at FMF. i was diagnosed as epileptic at age 20 while in nurses’ training. i was in a routine of a seizure every 7-10 years (on meds) until menopause. then everything went a little crazy for four years. they finally figured out the problem and i’m now
    back to the old routine.

    my younger sister had absence seizures (formerly called pettit mal) during childhood that she outgrew in adolescence. none of our children developed epilepsy, nor have the grandchildren.

    we both went on to complete nursing programs and work as nurses..But when a seizure comes, everything else has to stop. my plans go down the drain!

    the thing about epilepsy is that it is unpredictable on so many levels. praying for you and your family as you adjust to this new limitation. i will pray for all of you.

    i was touched to read of the positive effect this has had on your sons as they are more sensitive to her and her needs. you are so right! this difficulty will bring with it blessings for sure!

    and whether she grows out of it or not, Jesus will be holding your hand and hers. blessings as you all trust him for grace together

    • Thank you so much for sharing your story with me. It’s such an encouragement to hear and thank you even more for your prayers.