Wednesday, March 24, 2010
We have received some exciting news in the last month. My sister is having her first baby and her boyfriend just got a job in California and will be moving down her in a couple weeks. While they are looking for a house they will be staying with us. In this exciting time in there lives I feel sadness. As I prepare my spare room for their arrival I come across the guest closet. It is never used and remains closed. Concealed behind the doors lies broken dreams, wishes, hopes, and a life of normalcy (something we do not often pay thanks for and is so often overlooked by others).
We were given no inclination that Kennedy was sick while I was pregnant. I went through my whole pregnancy being told by the "professionals" that everything was "normal". I had a typical baby shower - okay it was a big baby shower, but she was our first! I received tons of toys, clothes, baby essentials, jumper, walker, highchair, playpen, table/chairs etc....When it became apparent that Kennedy was far from "normal" we were forced to part with our dreams and aspirations we had created for our daughter. We painfully stored away all the gifts that were unusable to her (which was almost everything we received). The symbolism behind those doors is heartbreaking. The irrational side of me wanted to get rid of it all. I wanted no reminder of what I had lost and what I will never have with Kennedy. The logical commonsensical side thought towards the future and the what if's and someday' s . As usual the more rational side won out. It will always be hard to go through that stuff! But we continue to move forward and search-out the positives. I am determined that this disease will not beat us as a family. It has become an annoyance we live with daily but it will not come out on top.
We are still anxiously awaiting our follow-up appointment with Dr. Haas. Do I think we will get the results - the positive optimistic side says yes. I believe we will finally be rewarded with an answer after 20 long months of patiently wading through diagnosis after diagnosis. I know the results will tell me that Kennedy has a disease, either Leigh's Syndrome or Molybdenum Cofactor Deficiency and that it is NOT maternally inherited. On the other hand, the pessimistic cynical side (the feelings I think that most of us as a society would like to dismiss from our minds) feels there is a small possibility that the news bestowed upon our ears on April 20th will change our existence forever. Kennedy will have a maternally inherited disease and every child I ever have will be bequeathed with this heinous disorder. Only God knows but we will face April 20th with courage and strength. It is very comforting that no matter what we hear I will be supported by my husband, my mom, an amazing family, and awesome friends.
(Christmas 2009 - The Bonomo's)
