Wednesday, September 24, 2008


Abby Update

We finally were able to deliver the gifts our dear friends brought to Abby's birthday party to the Children's Hospital at Scottish Rite. She received a little certificate of "Thanks" and was so happy to pull the wagon full of presents for sick children.
It is a struggle sometimes to remain optimistic about Abby's illness. Mitochondrial Disease is an ugly disease and we often have reminders that is it just ever so slightly beneath the surface... just ready to spin out of control on any given day.
It is a daily offering as we give her to the Lord and a daily battle not to grab her back.
Although she is doing well, overall, developmentally she is not moving along very well. Don and I met with her teachers yesterday and came to the difficult decision that she needs to be pulled from her mainstream class. It is so heart breaking to knowingly take a step in the opposite direction of where we long for her to be. But Abby is quickly becoming overwhelmed as 1st grade curriculum moves forward in rapid fashion and she still struggles with letter sounds and many foundational concepts.
She has also become more aware of her differences this year. She came to me with her "Dick and Jane" book a couple days ago and said, "Mommy, will you read this to me? My classmates are reading from word readers and I want to read this." My heart just crumbled. She also explained to me the other day, with sadness, that her classmates were playing the scissors game and she wanted to play too. Rock, paper, scissors. Such a sweet little game but one that my precious little one can not even begin to grasp.
So with this knowledge is coming a sadness, a frustration for learning, and loss of desire to even try. As much as we want her to progress developmentally and in her education... protecting her heart and spirit is just as important. She has always been a strong fighter and I want to preserve that in her.
So Don and I will go and visit self-contained classes (special education) next week and try to find a good fit for her. In that setting, she can be worked with where she is and not lost in the shuffle. Hopefully, her environment will be one with many more occasions to succeed and much less opportunities to "fail".
She also has had a couple seizures in the past three and a half weeks and so it looks like we will be increasing her Keppra dosage. Hopefully, that will help.
Your prayers, as always, are coveted. Please pray we will find a class that will be a good fit for Abby... educationally and socially. Please pray she will not be heart broken to leave her school and her classmates. It will be very hard, so hard for us all. They love her so much there... students and faculty. And we love them too. Please pray God will open and close doors and direct our thoughts, our conversations and our actions.
And it is my prayer, each night, that God will touch her mind with the tip of His finger and allow her to learn... that He will let us keep her and let her remain a living testimony to His audacious power, His abundant mercy, His endless love, and His miraculous power!

4 comments:

  1. Robby and I will definitely pray for Abby tonight. We will also pray for strength and wisdom for you and Don as you fight for her health and her heart.

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  2. Juliet2:01 AM

    Hi, I just read your account of Abby and I feel for you...this disease is indeed harsh. My little one, Ryan, has the same thing and he is only 4 years old. I am praying for you, as I hope you will pray for us as well. Take care, and take comfort in knowing that Abby is here for a reason. :)

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  3. Oh Dawn,
    My heart breaks thinking about our babies (2nd cousins) and when I think of how blessed we are with Alei and then I read blogs like this I am so saddened by the whole situation. I love you guys and I will pray for God's will to be one of hope and happiness.

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  4. Juliet, I hope you see this response and know we will pray for Ryan. Thank you for your kind words. Abby has already been used by God in MANY ways and we wait with joy to see how He will continue to use her for HIS glory.

    Thank you Joanna and Candi- your prayers and friendship are treasured so much!

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Thanks for sharing your thoughts!