TSC Global awareness Day
Today is TSC awareness day.
It is also a day we celebrate being 6 months out from Emmaus' surgery and the incredible progress she has made.
Six months ago today dan and I trusted our most prized treasure into the hands of very capable Dr's and Nurses. In hopes that removing one of her dozens of brain tubors may give her a greater future.
It amazes me that it seems to be a general rule of life that in order to grow, heal, or be made new we must first be broken.
When we finally got to see her she was indeed bruised and fragile- wires coming from everywhere it seemed.
In the next couple days came swelling, sleepless nights and more, once leading to a scare of hydrocephalus.
But along with the swelling and scary things, came support from good friends and family.
And the sweetest little blessing .
A sliver of hope in a stressful time.
The news our family of three would become four.
When the dressing came off, I think my mama heart was in shock. How would that gigantic wound ever be hidden, or would it be a constant battle scar for our little love.
Would kids tease her about it? Would people make comments in the grocery store? Or point?
But soon after going home the healing began.
The daily seizures stopped after the morning of November 15.
Emmaus' brain started to have time to develop- time that before was spent seizing or recovering.
By Christmas she was army crawling.
And Feeding herself.
(A task that had been long awaited)
She began showing her love for those around her.
Giving the sweetest hugs and kisses.
Hands and Knees crawling by february-
Crawling brought freedom to explore everything
(Or get into everything- We finally decided we should baby proof when we saw her try to stick her tongue in a light socket)
Standing and trying to climb came in the spring in one fowl swoop.
Climbing stairs shortly followed, And now this kid stands- ALL THE TIME.
(And is a complete cheese ball)
The daily seizures have been replaced with daily parenting, trials of patience for us and our sweet girl, and learning- LOTS OF LEARNING.
Today we celebrate Emmaus- We celebrate progress. And we hope that you will read this and share our story today.
A story about a little girl with Tuberous Sclerosis. Who fights every day.
A story not of sickness or of a scary disease- but a story of HOPE.
And the goodness and faithfulness of Jesus.
It is such a blessing having your family and our lives and we couldn't be happier for all the progress the last 6 months has brought amazing Emmaus. Thank you so much for blogging about your journey and allowing us to take this journey with you. Our lives are so much better with you guys in it :)
ReplyDeletebeautifully written La. what an awesome time table of Jesus' faithfulness and the hope that he brings. you tell it, share it and show it so well.
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