Psalm 139:13-16

"For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place, when I was woven together in the depths of the earth. Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be."

Friday, December 2, 2011

Run Away

Sometimes I want to run away.  From Grace's diagnoses.  From her daily therapy.  From the delays.  From the questions.  From my fear.  From the constant reminders that my perfect baby is not "normal"...that she has special needs.

I thought that once Grace had surgery to remove her encephalocele that I would never have to see or hear that ugly word again.  But the truth is it will follow her the rest of her life.  It's part of her identity.  But so is the fact that she is a miracle, the love of my life, a mix of sweet and feisty, beautiful, and 100% perfect.

God was not surprised by her diagnoses.  He is her Creator.  She is fearfully and wonderfully made.  All of the days ordained for her were written in His book before one of them came to be.  He is not surprised by what she is and will go through, or what we are and will go through as her parents.  His peace passes understanding.  He is near to us when we struggle.  And sometimes He has to carry us.

This song has given me hope and peace when I struggle.  I often struggle with the fact that since God is all powerful, why couldn't He have completely healed Grace so that she and we would not have to struggle with this.  But for whatever reason, only He knows, this was part of His plan for her and us.  Only in Heaven will we experience perfection. 

So, my hope is in You, Lord, all the day long...


  1. I could have written this post- every word expresses exactly how I feel about having a child with special needs. Hugs :)

  2. I think all mothers can be overwhelmed and have questions just like you.♥♫

  3. Hello, being a mom of a child with " special needs", born with an occipital encephalocele to be exact, I understand completely. Daniel is now 13 years old, I have never heard him laugh, he rarely smiles, no words, and doesnt walk. We also have a 17 years old typical child that we have experienced all those things with. Somedays are harder than others. My suggestion is to find others who have children with special needs. I work with an organization called Family Conection of SC. We are a parent to parent support network all made up of families that have children with special needs. We support each other because we understand what it's like. We know the ups and downs, sorrows, joys, and blessings that come with our children. If you would like to talk, please email me. Michelle Johnson

  4. Thanks for the beautiful song Karen - that is uplifting. I certainly can understand the feelings behind your words. Sending hugs your way!