" It is natural to want to know the life expectancy of the child after the prenatal testing or diagnosis after birth? I think this is interesting, because in all honesty we never know anyone's real life expectancy. Ok yes, there is the standard life expectancy for any person born that is issued by scientist/ physicians. But in reality, it has come to mean very little in my opinion. I say this because when I watch the news I hear of young children, teens, and young adults that die everyday from things other than medical issues. Yes, the disorder would be a factor in how long the child may live, but in this day and time there are so many other factors, that can and cannot be controlled, that affect life expectancy, that I feel the life expectancy based on a disorder doesn't mean much at all." (Crawford, 2014)
The discussion and the events following, really made me think! Is it necessary for me to ask, do I really want to know? My response in the class was that although Kerstin does not have a chromosomal disorder, she is diagnosed with Cerebral Palsy as well as Epilepsy (often reported in chromosomal disorders but it is not one alone). I have never asked doctors about "life expectancy", none of the parents that I've come into contact with along this journey has ever talked about it. They may have asked their child's doctor but it is not a common topic.
The talk of "life expectancy" never came up, even during the many surgeries Kerstin has undergone. Her last surgery was intense, she would need more anesthesia, and would be under for well over 4 hours, which meant it was 9 hours before I saw her. That was scary yet, survival and expectancy never crossed my mind.
During this discussion, I also stated that I am always so thrilled when I seen teenagers, adults and seniors with Cerebral Palsy and other abilities. I see hope! I see fight! I see encouragement! We can listen to doctors and other scientists and we can take test after test...no one truly knows their "life expectancy". Looking at genetics, my grandmother was in her 90's when she passed away a few years ago, one can only hope to reach that. Like my instructor stated, people unexpectedly die everyday. One statement I'll never forget from my Partners in Policymaking course; having a disability can happen to anyone and at anytime, people aren't always born with a different ability...sometimes it happens.
So, just yesterday, I was feeling really bad with a stomach virus. I could barely hold my head up after staying in the bathroom most of the night and morning. I had texted my sister and told her that I was not feeling well and needed to get some Ginger Ale and Powerade, she told me that she was going to get the items for me and that she would get Kerstin and keep her for the day for me. I was so thankful for that. Watching my daughter leave with my sister bought tears to my eyes! My stomach was hurting so much, I was so sleepy and needed that help at that moment. I couldn't help but think about "life expectancy" once again.
With no guarantees and no certainty of how long...I could easily leave this earth before my daughter! What then? That scene I just saw leaving our home, is what I deeply believe would happen. I truly believe that my sister would step right in for my daughter! That's what I want! This is really hard to write because I am the only parent involved in Kerstin's life. So life expectancy is not something I am going to dwell on. I want to live, enjoy life and be all that I'm able to be for Kerstin!
|L O V E|
Crawford, Adrianne, 2014. Life Expectancy.