I still have trouble seeing other people's kids, especially those the age of Peter and younger. It is hard for me to not think, "this is what Peter should be doing" or "they have surpassed Peter already." I am still trying to accept the fact that yes, he is handicapped, and no, he will probably never catch up and be normal. Whatever normal is.
I still feel like if we had adopted a child, knowing up front that they were disabled, it would be easier, but that somehow, having expected normalcy, I haven't accepted the disability part yet.
It helps to remember Jesus, the gospel. That He took my sins for me, tasted death for me, drank the wrath of God, clothed me in His righteousness! How can I not do whatever He asks? And if He says, "Raise and love this child for Me", shall I not do it? Have I not said, "I would go wherever You send, do any job for You"? And He says, "I give you this child. He is a gift. Love him, care for him. This is what I want you to do." (and of course, love your other children and your husband, and care for them as well).
O Lord, help me. To fix my eyes on Jesus.
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2 comments:
Im reading your bolg as we are awaiting the GLUT1 DS test results, at present, our 4th child, 4 month old daughter's diagnosis is opsoclonus myoclonus syndrome. She is on ACTH- though low glucose in her spinal fluid signals her diagnosis may be otherwise (GLUT1 ds).
In any event, thank you for sharing your story and faith. Our children are a gift and He has given us this special job. You are not alone, I will pray for you, your family and of course sweet Peter.
Hi! Nice to hear from you. Have you found the Glut1 yahoo group? It is called Glut1DS. I wish we had never done ACTH for our son, but that's what they recommended for infantile spasms before knowing about Glut-1. He was 7 months old (maybe 3 months developmentally) when he went on it, was on it 2.5 months, and during that time reverted to newborn state. It has taken a long time to regain even the development he used to have. But since his spinal fluid glucose was not low, we did not know about glut-1 till 10 months old. Anyway, I wish you well and hope you can get some answers soon. Feel free to email me at lrwhite42@yahoo.com.
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