How is it that one moment can rock your world and change the course of life? Yet at the same time, it brings understanding to past moments of questioning and uncertainty. As I sat on my daughter’s counselor’s couch, I wanted to scream at her. The diagnosis she laid before me, shattered my reality, and at the same time brought clarity to every question I ever had about my daughter. It brought me face to face with my deepest fear as a mother.
    No mother ever wants to hear their child is not normal (I’d really like to ring the person’s neck who created the word normal). No mother wants to her their child will struggle. Sure all of our children will struggle in life as they grow up; but to know your child will struggle even harder than the rest is beyond heartbreaking. 
    While I’m still grieving the dreams I had for my daughter and even facing my own demons of ‘what will other people think‘ (once again, thank you mom for this wonderful Shaw trait), a dear friend wrote the sweetest of words to me as I poured my heart out to her. She told me God already knew all of this, He already planned it. Life isn’t about what we make it, but how each struggle, and each life brings glory to Him. Am I willing to abandon it all for Him?
     Whether or not this diagnosis is truth (we are getting a 3rd opinion in July from a specialist), my mind was flooded continuously with words from a worship song. Over and over I heard ever so softly to abandon everything I had dreamed; to stand with my arms held high. He stood before creation with my baby in mind, He knew exactly what He was doing when He gave her to me. Nothing is ever as it seems.
     For now, I will grieve what I had planned and lay to rest what normal is. As the tears subside, I will be able to look towards the future and God. I’ll keep my eyes on Him and ask, “Alright, so this is Your plan, You created her perfectly in Your image. Help me to walk along side her to the life You called her. Help me to see Your beauty in all of this. For heaven’s sake, take the word normal out of dictionary!” 

2 thoughts on “No Mother Ever Wants to Hear Her Child is Not Normal”

  1. My daughter had a very serious parastic brain infection many years ago, and I can relate to your feelings so intimately. The medicines made her gain so much weight in a few weeks, no one recognized her and the stares and comments were unnerving.

    One thing I can say is, life does go on, God is real, and you will be changed, hopefully more sensitive and compassionate, appreciating the wonderful gifts God has given us in our children, knowing there is always someone suffering with something worse.

    Today my daughter is a healthy 20-year-old and hasn't had a seizure in over ten years. I thank the Lord for His Healing. If I had not adopted her from Nepal, she would have died.

  2. My daughter and her husband just had their second child who was born with Down Syndrome and Hirshsprung's Disease. I cannot describe the crushed joy and the desperate disbelief, but they are trusting God and expecting His strength to uphold them. We all get a different life – it's an adventure – and rarely do our plans match God's. Keep trusting Him.
    Debbie from Edge of Escape

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