DNA and veiled faith

My oldest child was born nearly 1 month early and considered premature. He was a teeny 5lbs 4ozs. The nurses at the hospital got a kick out of putting him next to 10lb babies cause he was so small yet so strong. He had 6 fingers on his left hand. In fact when my husband first shared that info with family they thought he was kidding. His pinky and additional finger share a knuckle. Other than being put under a warmer for a bit he needed little else in his early moments. I nursed him and went on like any other new mom does. A short time later we were told his hips were dislocated, not uncommon for breech babies and would have to wear a brace along with double diapers for some time.
As naive new parents I took doctors words at face value. Information overload began to happen and being flexible, capable if you will, didn't let this deter me from enjoying my most precious gift. We went home and started the long, sometimes daunting process of hip dysplasia. To shorten the story, he ended up having 2 surgeries at 9 mos just a few days apart in a body cast (from waist to ankles open only in the diaper area). This lasted 8 weeks and then just days after his 1st bday he had an additional surgery to put a plate in his left femur. By this time he was diagnosed with low muscle tone, and physical developmental delays as he couldn't hold his now larger than most head up (also given a name of macrocelephly pr something I can't seem to spell right:)until just past 5 mos. He did not sit up independently until over a year, nor walk until past age 2. He had several other surgeries, developed pneumonia after one diagnosing him with preasthma.
It wasn't until the day I held my daughter #2 that I truly grasped what he lacked. Her newborn body was firm and strong in its delicacy. He never had that, he was limp and mush always. Other people's babies don't compare. She opened my eyes to the denial of how real his struggle had been. Funny how you can be so deep in something that you don't really see. That was the day I started to fight fiercely for his every needs with every specialist, every school, every teacher instead of being led by their expertise alone.
#1 had his first seizure at 3 1/2 during his sister's 1st bday party in fact adding a neurologist to the regular visited doctor's. This story goes on and on with the same result. Trial after trial, carnitine deficiency, nasal drainage undeterred by meds and on. More surgeries totaling 7 before he was 7. All the way his mind never gave up, his ability to persevere and endure was relentless and noted by every therapist, doctor, teacher and friend.
I could keep going with this list but to save time I will remind you that now he is a thriving boy. His head is still noticeably bigger to the world of unkind thoughtless peers. He is not the tallest kid by any means but is finding peace in that too. He is academically avg or above average, on the honor roll with straight A's this last quarter. For practical purposes he appears to be just another adolescent boy. People close know he cannot run as fast, or as well as kids his age. However, he is creative and thoughtful (when focused, LOL). He has so much to offer the world that these imperfections do not matter.
I as his mother still grieve for his struggle to keep up physically. What parent doesn't want their child to be at least avg to the pack. As my mother says he is uniquely created for a divine purpose. All these imperfections and struggles along with the success and ability to overcome make him the person he needs to be. Yet I can't help but push for the why? What is it that caused his body to not be what it should have been? I used to pray that there was something to give, increase or do to "fix" the problems. Now I am at peace that he is who he is and there is Grace for him to have the desires of his heart no matter what his body seems to be capable or incapable to do. However in the deepest parts of me I long for an answer. I want to pinpoint what it is that is wrong, or different. It feels like gaining the knowledge that ____ is mutated etc will bring closure. Knowledge is power I repeat. I carry no blame that I somehow did something wrong. I just would like to know, why is it? When I discuss with schools, instructors etc having a name/explanation would make it all so much simpler.
Among a slew of specialist #1 has been followed by a geneticist. It is believed that his various issues are unrelated. 2 1/2 years ago she told me to wait 2 years not one to return for another follow up. She felt there was something that medical science hinted at but did not have a way to test...YET. The time had come, and nothing would stop us from this visit. I managed to be involved in a low speed accident in the traffic on the way, arriving 30 minutes late but had favor and get him to be seen. A new test was available and would take a month to get the results. I was reminded of no guarantees now nor ever of anything being found. Yes, yes..head nod I know I know. We spent most of the morning completing tests. A week went by, another and another until now I had rarely even thought about this floating out in the unknown.
Today, this glorious day I answered the phone to a kind voice from Children's Hospital. Ding ding ding. The bell rang in my head, wait for it...wait for it..preparing to be disappointed. Alas, the have found something. #1 has a duplicate Chromosome 17. When you google that you will find every condition he has ever had and all the labels he has already been given! I even found a support group for people with such. As I read through the people who have posted about their children I am even more aware that we are blessed. Many of these kids have extreme physical disabilities compared to him.
Let me add many of these kids were diagnosed at birth which tells me that we could have known sooner. Knowledge is still power, but I am thankful for being innocent until this time. If I had read about these kids back then I would never have trusted God to renew and restore #1. I would have questioned having more children, I may very well have allowed fear to zap my faith. Instead I sit here encouraged. All things are possible with Christ who strengthens us. How much more can he provide? Stay tuned folks...I am betting great things to come!