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Stories of Lost Children
Hanging onto Hope
by April Worley, Whitwell, TN, U.S.A. Abigail Hope was born June 13th 2010. She was the 4th baby. She has 2 older sisters and 1 sibling who I miscarried. She was a miracle from conception. I was not supposed to be able to have any children without help from medications. They were wrong. She is the only pregnancy I had that went full term and had no complications. She was healthy when born...or so we thought. On her fourth month of life, she had a fever and we took her to the ER where they ran tests on her and found a heart condition that needed to be looked at. We then saw a cardiologist who said she had SVAS, and thought we may need to see a geneticist about having her tested for Williams Syndrome; a rare genetic disorder that has congenital heart defects. These children are small they have mental difficulties and usually live with their parents their whole life. They are uninhibited and love everyone. They are pure joy to be around. After having her tested the results came back that she did have this disorder. We jumped straight into all the state had to offer on physical therapies, speech therapies, etc. She was doing wonderful. Then on her 2nd heart check up they told us it had gotten to the sever stage and she would need open heart surgery to repair this. i was shocked because she was doing so well. she was standing and saying dada and making babble noises, which was for her miraculous, most infants her age with Williams Syndrome ( 10 months) were not doing those things yet. She was always so happy. Everyone she met fell in love with her. She was always so full of life! I couldn't believe she was this sick and I couldn't tell? The surgeons assured me everything was ok. They would do the Cath Procedure here locally and then send her to Vanderbuilt UNV. To have her open heart surgery done, he said she would be fine he hasn't lost a child in 20 plus years. 15 20 minutes and you'll see her again. He was wrong. I remember the feeling hitting me before they came into the room. I told everyone something bad was wrong. I was right. Long story short because I cant really type about this anymore. They lost her in that procedure. I was devastated and shocked. HOW? WHY? My family was devastated by this loss. We are trying to pick up the pieces and keep going. Moving on sounds so cliché' and stupid. I have not moved past that day. That day follows me everywhere I go. But I have not let it stop me from living. It almost did. Now I have learned how to hold on to her...and keep the faith that it was not goodbye, but see you later. That I can hold on to the hope of seeing her again. I hold on to my hope, with both hands. My Abigail Hope, I do NOT have to let her go. I don’t have to move on. I can hold on to my hope, and help share my story with those who need to know someone else like them is there, and understands. This April 28th will be 1 year since I have held my precious little girl in my arms; 1 year since I saw her beautiful smile. 1 year since they told me she was gone from this world. It still hurts like it happened yesterday. as much as it hurts I can't not talk about her. She is still a part of my life, my heart, my hope. I love you Abigail Hope. Always & Forever,
Your Mommy, April
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