OK I'll see how far I get today. Sonnyboy is awake and watching NOGGIN.
So Sonnyboy has Klinefelters Syndrome(extra X) and parts missing (VATER Syndrome) and brain damage with seizures. He is very small and fragile and they send us home with no help and no referrals for anything except about three doctors appointments per week for the next few months. I started making phone calls and got him into an infant program with our local UCP.(united cerebral palsy association runs infant programs for all at risk infants). We were unsatisfied with the amount of therapy they were able to provide so we also used our insurance and had him in private OT,PT,Speech and computer. By his first birthday he still did not even have newborn skills and was sick and in the hospital almost every month. During the next few years we found out he had terrible allergies to foods and substances. He had multiple medical treatments and additional surgery. They told us he probably would never sit by himself let alone walk.
It was very discouraging. The older boys were 10 and 2 1/2 when he was born. Thankfully I had very supportive parents and some wonderful friends. Sonnyboy's care was consuming. Husband #2 read somewhere that 95% of marriages with a seriously ill child break up. We worked very hard to take care of all 3 boys. We worked very hard on our marriage. We worked very hard not to down the drain financially. We worked...
and it seemed as though all our hard work was paying off. Sonnyboy came off seizure medicine. Started holding his bottle at three years, started walking at four years, stopped getting sick once we had him allergy tested. The older boys were doing well in school and socially. Our marriage was fragile but intact. We lost some "team" members, most notably my Dad. We were paying our bills. We went to contract on a house and then...
They dropped 8000 pounds, yes, 4 tons of concrete on Husband #2. We were devastated. Physically. Emotionally. Financially. I don't know how we did it but we made it through. Husband #2 read somewhere that 99% of marriages where a spouse has a head injury break up. He figured we had a 99.95% chance of breaking up and just gave up. At the time I was really angry, but, if that marriage had not ended I would never have met Hubby.
If anyone is extraordinary it's Hubby. He is the smartest person I have ever known. He took over helping me raise my boys as if they were his own. He never raised his hand or his voice even when provoked by #1 son (otherwise known as the world's snottiest teenager). He helped me pay my bills and keep my home together. He proposed the day I signed my divorce papers. He helped me hospice my mother at home right til the end. He took care of me and took time off from his job to take care of Sonnyboy while I battled cancer , going through chemo and radiation. Hubby is the best. Of course we still had not encountered our largest hurdle...
but this is all I can manage today.