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This is the February interview continued. Questions 1-6 are in the previous April post.
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This past school year my niece invited my daughter and I to her High School literature class. My niece was given the assignment to interview someone using twenty questions she had prepared in advance. She asked me if I would come and speak about what it was like to have an adult child that requires total care. I was excited to have others share in what I have experienced the last 23 years. I also wanted God to use my daughter any way He wanted by allowing this class of teenagers to observe someone that was very different than themselves. My daughter sat in her wheelchair beside me while we sat in front of the class. My niece sat beside us asking the following questions. I thought they were great questions and I enjoyed speaking about my daughter.
7. Did having Sarah change you as a person and your focus in life?
My answer to a class of teenagers was quick. Yes, having Sarah has changed me as a person. She is a blessing to our family. We all have grown in many ways and have enjoyed all that she has brought to our family. How do you tell someone so young something that changes you so deep?
It is hard to fully explain all that God has done through the experience of raising a child such as Sarah. God used her to change me to be all that He wanted me to be and I am still changing as I care for Sarah.
When we knew the truth about Sarah our focus in life had to change. We began to feel shock waves of adjustment quickly. A whole new mind set was required in order to cope with what our family was now.
Shock wave #1: The child we thought we had never was. Sarah was never a healthy baby. She appeared to be normal until her first seizure at four months. God allowed her to come to us with special needs. We did not have two healthy daughters. Futhermore, we had no knowledge or experience to know what our new baby would be like.
Shock wave #2: It can happen at any time. In McDonalds, at church, at midnight, on vacation, at school or as you are going out the door. It could be short or very long. The second shock wave was the presence of seizures. Life stops when a seizure occurs, we get her on her side, we watch, we wait, we think, "Are we going to the emergency room? Are we going to loose her? How can we help her breathe?". When it is over we are shaken emotionally. We calm down. We try to go on with whatever we were doing. This can be repeated several times a day.
Shock wave #3: We had no idea how long we would have Sarah on this earth. "Is this the seizure that will end her life?" There was no internet to find information. All the neurologist had to give us was two peices of paper from a textbook that had a few sentences about Lissencephaly. That information stated that children with Lissencephaly usually die before they turn one year of age.
These were some of the first adjustments that began to shape the new way we would live.
8. How did you feel about having another baby after Sarah?
We were very excited! When Sarah was 10 months old we decided to have another baby. We knew that the doctor said there was a 25 % chance of reoccurance but we believed God was in control and we already had a healthy 6 year old. If He wanted us to have another child with a disability then we would do that. God knew what He was doing when he gave us a healthy baby boy.
9. What were Sarah's experiences in the public school system?
I know without a doubt that Sarah would not be what she is today without all the teachers, paraprofessional, principals, superintendents, therapist and students in the schools that Sarah went to from 3-21 years of age. Sarah needed stimulation from many people on many levels. People make Sarah excited.
I want to add more to what I said to the class. We did not have enough hands, energy or knowledge to match what the school could do for Sarah. I do believe that my education degree plus working in a school previously gave me the assertiveness that is sometimes needed to pave a way that has never been paved. I did have to advocate for what was best for Sarah on many occasions. As with any child, Sarah did well because she had parents who were very involved with her. Sarah was always the most severe that a school had worked with. I helped the school to do well with Sarah by providing equipment, food, information, etc. I communicated with the therapist and gave input when needed. I was very involved with the I.E.P. I believed God was guiding us to care for Sarah in the best possible way at home and at school. God gave Sarah to us to teach and raise, the school was helping us. The school helped make Sarah what she is today but I don't believe the outcome would have been the same if she did not have two very involved parents. The school can never be parents. Still, I am so thankful to the public school system as it is now as opposed to a few generations ago. Today they help and accept children with disabilities.
