Tuesday, April 2, 2013

Autisim Awareness Day

Our Riley was diagnosed with Phelan-McDermid Syndrome when she was nearly 3. After months of doctor appointments and hospital visits, we finally had answers to why she never spoke, walked so late, and all the other struggles she dealt with. It was a hard truth. Phelan-McDermid is a deletion of the q portion of her 22nd chromosome. It is an extremely rare condition that only 300 people worldwide have been diagnosed with. Since it is so rare, there is very little research available.  It leaves her severely mentally impaired, unable to speak, and autistic. Since it is chromosomal, there is no "cure". Her diagnosis brought a level of despair I had never experienced before. I always joked that I was God's favorite child, because He had always blessed me so richly and given me every desire of my heart. Her condition rocked me and my faith to the very core. I cried for the ordinary dreams and the big dreams I had for her, the vision that "I" had for her life.  She would never play video games, beg for a cell phone, argue with me over makeup, go to the prom, learn to drive a car, go on dates, football games, play sports like our other children. She would never get married, or give us grandchildren. She would never live independently and require care for the rest of her life. Dreams lost.

After months of raging at God, crying everyday and feeling sorry for myself, I confronted my own sin. I had to readjust my own expectations and look at Riley as He sees her. She is His child. Her soul was crafted by Him, her very life brought forth for His glory. She is not perfect? Says who? She has an innocence and an unawareness of sin that I am envious of. She shrieks with happiness at the mundane. Her brothers chasing her, Daddy walking in the door,  eating her beloved gummy snacks, playing with balls, and riding in the car. The simple, the everyday joys that are overlooked by most. 

I had to find new joys, new dreams, new expectations. She will never be addicted to Minecraft (I'm looking at you Justin), no cell phone bills, no silly teenage fights or, drama (I'm looking at you twins!) no crashing my car (I'm looking at you Taylor) no stomping away in frustration over a lost ball game (looking at you Sam) LOL!!  She is the daughter we will never have to "give away" in marriage, she will forever be our babygirl. Most importantly, and without a doubt, her eternity is held and secured by our Savior. I don't have to go to Him in prayer daily over her salvation. She is His. 




It is still so very hard some days. When I see how independent and beautiful her big sisters are, I get a stab of pain. When I see other 11 year-old girls giggling over Justin Bieber, and clothes, I get that familiar ache. In those times, I know I am being "Me-centered" not "God-centered", I am having a short-term view of life and not an eternal vision. 

THIS life, in THIS body, on THIS earth is but a vapor.  She is impaired HERE. She will be whole and complete in heaven. She cannot speak HERE, she will sing praises and shout His name forever in heaven. Her body is broken HERE. She will have a new and perfect body in heaven. She has taught me to have an eternal vision. To trust in the Lord for my own salvation, that I may one day join her in sky, to hear her speak, to know her thoughts, to be found worthy of her love. 

6 comments:

  1. ah, thanks for sharing your story. She is beautiful! You are strong :)

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    1. Thanks so much for taking the time to comment. Have a blessed day!

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  2. Nikki, this is absolutely beautiful! Made my eyes water. Your words are up-lifting. You are truly an inspiration and im glad to call you a friend.
    <3 ~d

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    1. Thanks so much girlie. Love you my friend!

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  3. She is a beauty and from reading this it sounds like she has an amazing mama!! Hugs from Conroe, Texas

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  4. I nearly cried at work! Nikki this is a beautiful post. Thanks for sharing! xoxo

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