Thursday, June 9, 2011
A Long Time Coming
I have been joking about writing a book for years. Our life is, well, different than what I know about others. Most people don't have an explosive child who they are occasionally scared of. Most people wouldn't understand the number of doctors and specialists who have been in our daughter's life since well before her birth. Most people wouldn't understand the number of medications we have tried on our daughter, hoping we would finally find the one that helped her. Her issues are numerous, Epilepsy, Cerebral Palsy, BiPolar, legally blind, deaf in the high frequencies, colonic neuropathy, reflux, sleep disorders including sleep apnea, intermittent explosive disorder, ADD, OCD, ODD & probably something else I am missing or that hasn't been labeled yet. Her learning is very slow, not just academic learning but everyday learning. She is considered severely developmentally delayed. Part of me hopes educating people teaches tolerance for families like mine, part of me wants to document our life for the future. Already I " have forgotten" half the challenges we have been through. There were literally months of our life with Teale that she didn't sleep more than a few hours a day. Even to me, who lived through those days questions whether I am over exaggerating those months. She has had two hospitalizations for long term seizure monitoring. Each time was about 14 days long. Mark or I had to be with her at the hospital, 24/7, making life at home a huge challenge also. One of us slept at the hospital, the other one entertained Teale all day long. Teale was attached to about 15 feet of wire and we were stuck in the hospital room at all times on video monitoring. I liken it to being on real TV without the pay check. It was very difficult to keep our daughter happy, but the support we got was incredible. Teachers from her school came to visit, friends, our church family and of course our relatives. We would color, watch TV, play with sensory things like play doh or shaving cream. There were visits from hospital staff, Sponge Bob, a clown, dog therapists and music therapists. Mark brought his sax, nieces brought their violins, we would dance and sing and make the most of a tough time. The seizure disorder NEVER veered it's ugly head while she was attached to those wires, so we never got the information we were hoping to get. It was incredibly frustrating, but like so much in our life, we had no control. Then there were the two weeks Teale spent in the pediatric psychiatric center at the hospital. Talk about letting go of control. I felt beyond helpless after months of Teale not sleeping, I had never felt so close to suicidal myself. It was unimaginable to people on the outside, Teale would sleep the first two to three hours of a night and then be up the rest of the night. If you saw her during the day you would swear we must be delusional or lying, because she functioned fine. We tried many sleep medications, things that would knock out the average adult and yet she would wake after about two hours every night! Teale was only in first grade when this manic behavior took place. By the time her psychiatrist and pediatrician decided we needed to hospitalized her, Mark and I were almost at a total breaking point. We were exhausted beyond words and her doctors wanted her hospitalized not only to help her, but to give us some respite. The night Mark took my baby daughter to the psych ward was one of the toughest nights of my life. I had seen "One Flew Over the Cuckoo's Nest" and Teale was only six years old. Mark came home that night and we slept for the first time in months, but certainly not restlessly. Teale proved to the staff that Mark and I were not crazy, she did not sleep at all, tops three hours a night. Honestly, I remember feeling such validation that I wasn't crazy when she continued to not sleep at the hospital. They diagnosed her BiPolar and put her on Lithium, after two weeks we brought her home, still not sleeping but with the hope the Lithium was building in her system and would soon kick in. Some of my most proud moments in my life have been how Mark and I have handled these hospital stays. We have put much thought and energy into keeping her safe and happy. We have mostly been in agreement on Teale's care. From the first ultrasound that reveled she had an open stomach and doctors offered us a late term abortion, we have agreed to fight for Teale. She has proven us right by winning fight after fight also. She was born unresponsive, 7 minutes without a pulse and her intestine and colon hanging out of her 4 pound 6 ounce body. After an intensive full resuscitation, she had less than three hours to recover before her first surgery. The risk of infection was too great and so the surgery to put her intestine back into her tiny body was completed before she was hardly even stable from her traumatic birth. Most people wouldn't understand life as we know it, but I believe we all have compassion for what others live. So, if someday that book that has been a long time coming becomes real, I hope it doesn't just tell a story, but teaches love.