Amanda's life

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My husband and I were married in Nov. 2001 and knew that we wanted a family right away. We just knew we would have a girl and had named her Amanda Grace before we were even married. After 5 months we learned we were expecting! We were so excited!

At 24 weeks, we were referred to a specialist and told there was a problem with Amanda’s measurements. We are both short, so we weren’t too concerned. We were devastated when the specialist (after an extensive sonogram) told us that Amanda had Thantaphoric Dysplasia (a fatal form of dwarfism). Over the next few months we experienced every emotion possible. We tried to believe that God would heal our daughter. I struggled with embracing this child who was given no chance of survival.

As our due date approached, I began a new struggle. As much as I wanted to meet this little one growing inside me, I wanted her to stay inside. At least she was safe and alive there. I was induced on Jan. 2, 2003 but ended up needing a cesarean. It was immediately obvious that the doctors had been right. Amanda was rushed to the NICU and placed on a respirator. That was the deepest sadness I had ever felt.

We spent the next day loving on Amanda with all our hearts. Our family and friends were all able to see her and spend time with her. After much prayer, we decided that the next morning Amanda would be taken off the respirator. We were amazed at how well she did. We were even able to take her to my room for a while. Later in the evening, Amanda had an “episode”. (That’s what the nurse called it.) She was still breathing, but was completely unresponsive. We held her and told her we loved her and then told her it was time to go to Jesus. With Him, she would be made whole.

Amanda lived only 52 hours, but her life changed us and impacted countless others. We are so grateful that God entrusted us with this special child. God was and is so faithful daily! We are also grateful that He placed supportive, loving people in our lives to walk through this experience with us.

We continue to love and miss Amanda every day. It does not get easier. Holidays and birthdays are very hard. Even though God has blessed us with 3 more beautiful children, we feel like one is missing. I am able to manage my emotions better. God continues to use Amanda to change me and draw me closer to Him.