"I can't do this without going into some detail, so I hope that is okay. If you need anything more, let me know. In short, this crucible lasted for almost 19 years, the life of Hanna, but we still use this experience to help others.
Our lives were forever changed when our daughter, Hanna, was born 10 weeks prematurely on Nov. 21, 1983. Little did we know what we would go through. We had hopes at first that all would be well with her and we kind of wore blinders for the first little while. She was the 6th of our children, and the first to have any problems surrounding her birth. She spent 7 weeks in the NBICU at LDS Hospital in Salt Lake City, UT and had several set-backs, but after getting a book on premature infants, we realized she didn't suffer some of the ill effects of prematurity.
As time went on, we ended up in the hospital several times for various health problems, including failure to thrive. We found she needed help at this point and got her started in early intervention because she wasn't progressing and was labeled as developmentally delayed. She continues to make some progress in some areas, but socially, she was not doing well. We had her diagnosed as Autistic when she was about 10yrs. old.
Her whole life was a trial for our entire family, because of her Autism and other health issues. We worked together, relied on our faith and just went day to day. She finally graduated from high school and was so proud and you could see it in her face.
Years before, one of her health problems was found in an ultrasound when she was 8 yrs old. She had surgery at the time to drain a syrenx in her spinal cord and then later she had to have her neck fused. In July, she had an MRI as a follow-up, and the Dr was concerned the syrenx had returned, so he wanted to get another MRI in October. ON Oct. 9, 2002, I took her in to Primary Children's Medical Center and because they had to put her under for the MRI, we had done as they requested, not letting her eat or drink for so many hours. Well, while she was under, she vomited and aspirated. They worked on her for 30 min. but because of her weak lungs and heart, she died. We were rocked when we were told of what happened.
My husband was out of town, at his parents in Santa Monica, CA and I had to call him and tell him what had happened. I wasn't able to speak, and so the doctor told him. He told me he would be home as quickly as he could. He was on the road in 20 minutes, and says he doesn't really remember much of the drive. We immediately gathered our children around us and other family members to pray together and support each other. Neighbors came to offer what ever assistance they could and our Ward of the Church rallied around us. We felt great comfort in knowing how loved she was in the community and among her friends from school and church. Since that time, we have gotten involved in various causes to help heal our hearts. We have done a tree in her honor for the Festival of Trees here in Salt Lake. We have participated in online groups to help others dealing with a child's loss, especially ones with congenital heart issues. One thing I found very helpful has been to just talk to others about Hanna and our experiences we had in her life. The hurt is still there, but we are strong in our conviction that we will see her again, and that her body is whole now, with none of the problems she endured in life. We have many "Hanna" moments between my husband and I and with our children. She is not forgotten. Our Grandchildren hear us speak of her, and know we miss her. Life goes on, but we are all changed for having her in our lives."