eSpecially Parents: Karen's Story

My name is Karen. Vanessa and I were freshman college roommates.  Although we do not see each other as often as we would like, we are able to catch up with phone calls.  It was in fact when Vanessa called to tell me that she was pregnant with Ben, that I shared with her that I was also pregnant with my first child.   We discovered our due dates were about one month apart; oddly enough this occurred two more times.  

I am a married stay at home mom of Matthew (5) and Jacob(7).  I also had a third baby (Michael) that died at 8 days old after emergency heart surgery complications.  I include Michael in all of this because I think the loss of him, has influenced our decision making process.

Jacob and Matthew have a brain disorder called Lissencephaly Pachygyria (Smooth Brain).  Basically instead of having all the lumps and bumps that the brain normally has their brains are relatively smooth.  We have had all types of genetic tests done, but they have been unable to diagnosis what has caused this disorder.  When I looked this diagnosis up on the internet 4 years ago, the indications were that if your child had this disorder the child would be comatose, vegetative, die before the age of 3.  My children are extremely active and although the diagnosis does describe their brain it does not describe what is going on with them.  Jacob is more severe than Matthew.  Jacob has autistic tendencies, while Matthew is more ADHD.  They do everything much slower than other children.  

I am doing this to share the story of my children in the hopes that it will offer other people hope and courage as they face a scary diagnosis of their own.  I also hope to share that although there are hardships to raising special needs children, there are also many benefits!


Read more about the eSpecially Parents Series here.