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Monday, August 1, 2011

Happy Anniversary

August 12, 1999
It was going to be our tenth Wedding Anniversary and as was our tradition, we were taking a vacation. We had decided to get a house in Cape Cod, a splurge from our usual vacations of camping. But it was our tenth and it had been a rough year. Our second child, Teale had been born in December, premature and having a severe stroke at birth, the last nine months had been an emotional roller coaster. She had been diagnosed with cerebral palsy, we were told she was deaf in the high frequencies and blind in the right side of each eye. Her brain damage was extensive, but only Mark and I knew how extensive, as we chose not to share this with anyone. Our thoughts had been, if family and people who worked with her knew how little of her brain was not damaged, they would expect much less from her. So far our theory seemed to be working, as she far exceeded all her specialists expectations. We were learning sign language to communicate with her and her team of therapists came into our home daily. She already had a teacher of the deaf, a physical therapist, a speech therapist, an occupational therapist, a vision therapist and lastly an orientation and mobility therapist. Teale didn't use her right arm at all, so crawling was not going to be happening, but she scooted fast on her behind! She pulled herself forward with her left arm while in a sitting position, but because she was so fast and her vision was considered legally blind, she often "ran" straight into things. The orientation and mobility therapist had been brought in by our vision therapist to help us and Teale learn strategies, so Teale would not get hurt. We had found out that her iron was dangerously low just a few months ago and had had another specialist thrown into the pot of many specialist. Teale was now seeing a hematologist to try and figure out her issues with low iron in her blood and check for any other problems. We pretty much knew why she had low iron though, as she was refusing any baby food, preferring to nurse often. I was having a tough time keeping us with her demand. I was exhausted from the stresses of all the therapists coming into our home and the many, many doctor appointments. At that time in Teale's life we saw neurology, because she had had seizures at birth, but presently was not on any seizure medicines. She had many gastric issues because of the gastroschisis at birth, so we regularly saw a gastroenterologist. She had an orthopedist for her cerebral palsy in her hand and leg. She wore a hand brace to keep the muscle's stretched in her right hand. This brace drew much attention from strangers, once I was even asked if she was a bowler. Teale already wore hearing aids on her tiny bald head, seeing an audiologist for this. Her pediatrician saw her more than average to monitor everything carefully, but she had a special pediatrician also. A developmental pediatrician and a team of experts at the Kirsch Center in our local hospital would make sure Teale was getting all she needed and deserved. Teale's right eye was "lazy" and the left one was being patched to strengthen the right eye. Often Teale was a sight to see, a brace on her right arm, a patch on her right eye and huge hearing aids on her tiny ears. People would ask questions or just stare and make me wonder what they were thinking. From the beginning I was open about Teale's special needs, feeling much better talking about it all, as opposed to hiding. The "team" of people who helped us with our daughter was incredible. I couldn't believe a nine month old could have so many people in her life. We needed the break from the everyday chaos though and our Anniversary seemed like the perfect excuse. I found a house to rent in our local paper, we packed up our mini van with all but the kitchen sink and headed to the Cape for some much needed "four family" time. Our son was turning four years old on August 15th and we had decided to celebrate his Birthday before the trip. We had a huge party in our backyard, trying hard to make sure he never felt "lost in the shuffle" of everyday life with his "special needs" sister. I remember getting Teale's ears pierced, figuring between being very bald still at nine months and wearing huge hearing aids, it would be something pretty on her. My Mom had not let us get our ears pierced until we were thirteen, so maybe it was also me rebelling a bit, knowing she didn't get to control my daughter. I had her ears pierced just hours before Beau's Birthday party, all our family would be there and it seemed easier to just take the abuse all at once. My Mom would be sure to comment, but actually it is my Mother in law's comment I remember best after all these years. "She looks like a Jezebel!" she said. I remember being hurt at the time, now it just makes me smile, what a ridiculous statement. With Beau's Birthday party behind us, we were on our way to celebrate our family and our marriage. I was proud of all Mark and I had made it through, a tough pregnancy and very challenging year being the most notable. We had married relatively young and quickly, dating only nine months before our wedding. Many times I felt the pressure of people who thought we would never "make it." But we had and still with much love and respect for each other, we would celebrate ten years of marriage in our own quiet way, by regrouping as a family. The house at the Cape was perfect, clean, spacious, close to beaches, our time there was great fun, until it happened. Teale was sitting in her bouncy seat, I was probably trying to shove the baby food she hated so much into her mouth. We had her on iron drops, but ideally her eating iron was best. She would have no part of this though, turning her head and spitting it out, my daughter was nothing if not "strong willed!" That is when it happened, her head turned to her left quickly and then mechanically, slowly, with a bouncing rhythm, came back to center. She did this several times, alarming both Mark and I. We had run in home daycare for ten years together, we knew this was not a normal thing for a baby to do. So from Cape Cod we called our beloved pediatrician. Our suspicions were confirmed, it sounded to him like something neurological. He would set up an EGG with neurology for as soon as we were back. ~to be continued~

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