I ran acrossed a DVD of our home movies from around 2 years ago when Sophie was first diagnosed. I should have known better than to watch them. There was my precious little girl sitting in her high chair eating her gf/cf pancakes with peanut butter and Mcdonald’s french fries. Okay I didn’t have this diet quite down yet, (Mcdonald’s fries have gluten). I was still learning, I still am now.
I watched the videos of her lining up toys and humming which she no longer does, at least not the lining, she still hums sometimes. What struck me today was her language, she was repeating so much. We get so excited about every little thing she says now. I realized she was still regressing during this time, even after I had started the gf/cf diet.
This is so exhausting. There are new wounds all the time. New milestones she hasn’t met, new chances to make friends that she still can’t make, watching her go through pain that I don’t know where it is coming from and I have to guess and hope I get it right and help her. What a horrible, vicious disease autism is.
I have no choice but to go on, and neither does she.
There is such pain when I see the videos of a healthy beautiful baby who looks straight into my eyes and smiles and points and waves. She could count to 20 and count to 10 in Spanish. She was learning the alphabet and singing twinkle, twinkle. Oh how precious and grieved those days are.
Some parents choose to accept autism and just live in this place, maybe their child doesn’t have the pain that mine does, I don’t know, isn’t that just apart of this disorder? I don’t understand how you could just accept it, with the pain that is involved. I guess it just doesn’t matter, because that isn’t a choice for me. I have to keep going.
I don’t believe that God gave us this disease, but I know that God has made a way out for me. With my patience and faith he will guide me through it. She will be cured someday, made completely whole. I will not give up faith until I see the glory of the Lord in the land of the living. He has loved me as His daughter and He will never abandon me or my Sophie. Though the sorrow may last for a night the joy comes in the morning.
I will one day dance at her wedding.
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oh, my heart weeps for you…i can promise you that the dark days only make the bright days seem all the brighter…
sending my prayers and hope to you and sophie!
Comment by heather on June 9th, 2008 @ 9:46 pm