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What a challenge to find out you are going to be a Mom again at 39 years of age with a 15 year old child saying "No Way!". Oh how I laughed from happiness until tears came rolling down my cheeks. The excitement of preparing a nursery and our home for a new baby.
Then the miracle of birth but with complications and not being told what was really going on until a pediatrician comes to your room to say your baby must be rushed to another hospital that has an intensive care neonatal unit becuase the baby is having seizures. By that time pictures of my baby had been taken by the nurses in the nursery and I was told a priest would be called. I had bonded with my baby while she was hooked up to various equipment and I told her we would fight and come out of this together. Then came the time for our separation of 90 miles and the waiting for the telephone to ring and the receiving hospital to give positive or the dreaded negative results. There was the empty nursery at home, and the daily trips to the hospital to visit and finally hold and feed my baby. There was the joy of bringing her home after her 9 day stay in the hospital, and the guilt I felt because our child's stay was short compared to many of the other parents' children.
Once home we quickly settled into our new routine which consisted of frequent doctor vsits. All seemed fine for the first three years. Then one morning our child was unresponsive and no one knew what was wrong until she started convulsing while we were awaiting an ambulance. She was put on an anticonvulsant (Tegretol) to control her seizures and we then had more doctor visits and lab work to check her seizure threshold levels. We had a pediatrician who would not address our concerns and would not refer our child to a neurologist, so we decided to switch doctors.
We enrolled our daughter in a nursery school making sure that her seizure history was well known and accepted by the staff. About six months into her nursery schooling she had her second episode of status epilepticus and the nursery school made it very clear that our relationship was to be terminated immediately. In response to my child's questions of why she was not allowed back to school, I told her that we would be fine.
Our daughter was enrolled in elementary school the following year. We provided the school with all of the medical history and the teachers were cooperative; her classmates were read a story about children with epilepsy and a plan was developed for procedures to be taken if our child were to have a seizure while in school. We did encounter some serious problems and interference on medical issues with some of the school staff when our girl was in the first grade. Our child had a difficult time keeping up with the class that year until a tutor was provided.
Her second grade went much better and at that point more extensive testing was done by neurologists, phsycologists, and special ed teachers. She was then diagnosed as mentally retarded. During this period of time she experienced an episode of status epilepticus every two years. This is a frightening experience for the child and the family. Again I told my child that we would be fine. It was during this period of time that I started a local support group for people who have or who are concerned with epilepsy, and our daughter was an active participant.
Our child is a loving person who is very kind and considerate of others. She enjoys sports such as skating, basket ball, roller skating, and soccer. She is in a challenged Tae Kwon Do class and her family and friends are so proud of her accomplishments.
This year my daughter is in the sixth. She is in a learning collaborative program and she is having a great year and is in what we feel a wonderful program for her.
The past twelve years have been so challenging due to what we have faced as a family and the obstacles that we have overcome. We take each day as it comes. I know the future will have many more ups and downs but we will prevail and be fine because of our family's love and support. I think that the hardest part to being a parent is when your child is sick and with high temperatures, which greatly increases the probablity of a serious seizure.
In closing, I want to say that although I often worry and sometimes am sad when I see my child being pushed to the side by others, I say to myself and I say to my family, "we will be fine."