Putting Things Into Perspective

It's been an interesting week to say the least. After what appeared to be a normal C-Section we were shocked to learn that there is a high percentage that Lily has Down Syndrome as well as a congenital heart defect. A pediatric cardiologist with the Cleveland Clinic spoke with us regarding her heart condition and the treatment. The good news is that her heart defect is fairly common and fixable. She will require surgery at 3-6 months to fix her heart and should not have any other issues after that and everyone knows that The Cleveland Clinic is the number one cardiac center in the world.

The Down Syndrome needs to be verified with chromosome study. I've been doing a lot of reading on it lately and it's basically an extra chromosome that is introduced at conception and it's a more common occurrence with older mothers but can happen to any mother regardless of race, nationality or socio-economic status. This genetic abnormality is in no way preventable and 90% of pregnancies that test positive for Down Syndrome are aborted. Kim and I refused all the prenatal screens figuring that we would keep our child no matter what. The doctors who have seen her at Fairview are fairly certain that she has Down Syndrome but we need the test to be certain and I never realized just how high the odds are for women as they grow older. Lily will also have to see an audiologist and possibly have tubes placed in her ears to drain fluid. The congenital heart defect, hearing, etc. are all physical symptoms of Down Syndrome.

Our life will definitely be challenging but Kim has experience working with the mentally challenged and we've both adopted a positive attitude towards this. Lance Armstong said that cancer was the greatest thing that ever happened to him and we are both looking at it from that perspective. There are some amazing things being done with children who require "special needs" right now and we do not consider this necessarily a "bad" thing. It may seem "politically correct" but when I told this to my Dad (who is in a nursing home with MS) he said that we will have an "exceptional" child. After reading several stories about kids like Lily, I now truly believe that.

This has all really put things into perspective for us and I hope everyone understands if I cannot immediately deal with work issues at least for the next few days. Kim and Lily will be discharged tomorrow but it will be a long road ahead with doctor's visits, therapy, etc. When Lily was taken down to the NICU for heart observation and before we had any information, we feared the worst. Now we are just happy to have a little one no matter what her issues are.