I am reading a wonderful book called The One Year Book of Hope by Nancy Guthrie (www.nancyguthrie.com). Nancy has an older son and lost two children to Zellweger Syndrome, a rare genetic disease in which the children live about 6 months. After her daughter, Hope, passed away, Nancy’s husband underwent a vasectomy because they knew they had a 25% chance of having another child with Zellweger Syndrome. A year and a half after Hope’s death, Nancy discovered that she was pregnant. This baby also had Zellweger Syndrome. Gabriel was born and lived 183 days. Rather than feeling incredibly sorry for themselves, the Guthries chose to view their children as gifts and blessings. From my own experience, this is a choice. I can choose to groan and moan about my horrible luck (and this is very, very tempting at times). I mean, how unlikely that we would adopt a seemingly healthy child from Guatemala who later would be diagnosed with an ultra-rare fatal genetic disease? I can choose to view Carmen as an incredible gift. I have to give her back much too soon but right now I can enjoy my very precious little girl.
This week Carmen has three doctors’ appointments. Physical medicine specialist, orthotics to measure for ankle braces, and appointment to schedule G-tube surgery. I clogged up Carmen’s NG-tube again with Prevacid- eek! Today I soaked the Prevacid tablet in Coke so hopefully no more clogs!
