As we get closer and closer to Halloween I am having more and more feelings creep up inside of me. Last year on Halloween, when Kenai was 5 days old we were given his diagnosis. An extremely rare genetic makeup, a deletion of genes on his 7th Chromosome, so rare there is no name for it and very little information as well.
As I sat in the NICU after having been told a very brief description of what Kenai had I immediately started to google search. I found a family with a little girl with a similar but different gene deletion and wrote her mom right away. We sent messages back & forth and on about our 4th or 5th exchange I found out her daughter had passed away right around her 2nd birthday. This crushed my spirit like I cannot explain.
When the geneticist called to give me a more detailed read out of what this deletion could mean there was a lot of not so great information. Also every single thing I could find online was worst case scenario & was quite hard for me to swallow. I had already been told when he was not even a day old that there was something very wrong and the combination of all of the surprise information, just having a baby and having to leave him everyday in the NICU to be a mother to 3 other kids at home was something I pray I never have to walk through again.
I was quite upset for sometime over receiving his diagnosis so soon after birth, I felt robbed of the newborn life. I would sit with him for hours and let the “what ifs” rule my mind. I would wonder if he would be responsive, if he would know who I was, love his siblings, smile, laugh, have a favorite toy, be able to use his body, the list really goes on and on. As I look at my beautiful boy today I see things much differently. First, I know the “what ifs” and some possible predictions were way wrong, Kenai is nothing like what I wondered he might be. I wish I knew then, but I think it has made me appreciate all that he IS that much more. Second, I am now incredibly grateful for the swift action of our doctors in the NICU and them finding his unique chromosome make up so soon. In the end it has made me not worried when he doesn’t hit a milestone on time but it makes my heart leap for joy each time he achieves a new step. It is funny what happens when you allow yourself to breathe, step back and take a different look at your situation. You can see things under a new light, if you are willing to do so. Even the darkest times have the biggest lessons. Each one is there for a purpose. I am so thankful for our life. It is ours for a reason & I will choose to see happiness as much as I possibly can. Sitting in the dark does no good for growth, for you or anyone in your circle.