The Flight of the Moody's: October 2010

When I found out that Connor had a chromosome deletion we had many ups and downs. We were told more than once that he had a brain disorder and he would possibly not live a full life. We were told he would have heart problems and several other disorders that were so overwhelming to think about at the time (and to be honest still are). Connor saw so many specialists (still does) that first year it was almost hard to keep track of our appointments.
After several months of tests we found out he does not have a brain disorder (thank God) but does have an underdeveloped brain and missing gray matter that to all of his doctors does look exactly the same as some very serious diseases. I cant tell you how lucky I feel to know that Connor is somewhat a miracle. He has so much going on but all in all it could be worse. I personally know a few people who's children do have this particular disease and I know they would trade places with me in a heart beat. I don't care if my child's brain is missing vital information and I don't care that my son has "special needs". I HAVE my son. Who can ask for more. It pains me to think of all the parents that lose their children. They are supposed to watch us pass. It should not be the other way around. I do more research then needed and have become sort of an advocate for children with Chromosome Deletions. I wish it was more widely understood.
As rare as Connor's condition is and as confusing as it is too his doctors and to us, there are other children and parents out there even more confused.
I do notice as Connor gets older that it is affecting him more and he has many more challenges than he did a year ago which just prepares us for more doctors and more therapies. His life is our life lesson. He has taught me patience, strength and structure.
He is by far my soul mate and my hero. Not to mention our little miracle.
When we were told that he had a chromosome deletion and began all testing and brain scans, Eric and I were very confused. I became picture crazy because I didn't know at the time weather or not it was a fatal condition, a normal condition, rare or what have you. I started documenting everything and to this day still do. Each day is a different day and the most special day with Connor.
I took a photo of Connor in a bubble bath starting at the age of four months when I took him out of his bath sling. Connor was not able to sit up properly on his own (for more than a few minutes) until over a year so laying in the tub was normal for us and the happiest times for Connor. He still prefers to lay in the tub to this day. At around 23ish months he became very afraid of bubble baths so I had to stop shooting my "bubble boy" shots at the age of two.
I am now in the process of editing them to black and white, finding proper frames, blowing them up and displaying my beautiful son in my apartment.
I have so many shots of Connor that it is hard to believe that I still have a workable index finger. I cant believe it hasn't fallen off yet. But, until they find other kids with the exact deletion as him and until I can go somewhere and say Connor has blah blah blah and someone is able to respond oh, my cousin has that too, I will treat each day like it is a special day.

4 months