So even as I am writing this right now I feel nervous about doing it. I'm a pretty private person and I have a deep need to shelter anyone that is really close to me, so since this is about my own child I feel that my whole system is shouting "Warning" at me. But I have thought about this for months now and at first was determined to keep it to myself, but I hope that by talking about it someone else who may be going through something similar will feel like they are not alone.
As all of you know when Connor was first born he went through a myriad of tests. He was also given a genetic test that came back normal. One of the main reasons I haven't really talked about this is because I didn't want people analyzing my child for things that looked different. Anyway, as time went on and he still wasn't progressing we knew something was up. Since Reno has NO geneticist, we had to wait for a doctor who only comes to Reno twice a year, lucky for us she happened to be coming a month after we met with a pediatric specialist. For anyone who has gone through this process knows it is pretty crazy! They ask every possible question and take every possible measurement of Connor possible. The blood work takes forever so we finally met with the geneticist again at the beginning of November and we were finally given an answer. Connor was diagnosed with 5p Duplication Syndrome. If you're thinking "Huh?" welcome to the club. Basically it is a really rare syndrome that can only recently be diagnosed as the technology is only about 3 years old. Unfortunately since the technology is so new the only information she was able to give us was based on 5 people who are worst case scenarios. Some of the affects of this syndrome is hypotonia (extremely low muscle tone - Connor's is pretty severe), sleep abnormalities (which is why he STILL doesn't sleep through the night), and varying degrees of mental retardation. Every parent wants their child to be perfect and I guess to be as "normal" as possible, so the initial shock of realizing your child will struggle is hard. On a more positive note the future is still so vague for what awaits Connor. Since they were able to diagnose so early he will be one of the first to get early intervention, which we know can only help. I still feel confused about alot but here is what I know for sure:
-It could be sooo much worse. I have so much respect for parents with children who are severely disabled.
-Going to the physical therapist, occupational therapist, nutrionist, pediatric specialist, and pediatrician on a regular basis WILL pay off (he is crawling now and starting to pull him self up!!!) :)
-Connor is special. There is something about him that sets him apart.
-Everything happens for a reason and I know it is by no accident he was sent to our family.
-It is good to talk about what you are going through because you never know who it might help or who might be able to help you in return.
I have developed a deeper understanding of the love our Heavenly Father has for us, and it is for that reason that I have faith that everything will work out the way it's suppose to.
Besides...who couldn't love a baby in a basket?