A Father's Perspective
Jess has done a great job telling the story of her pregnancy, Noah's birth, diagnosis and NICU stay, but I also wanted to add my own perspective as a father during that time. This is one of the harder things for me to write about, but I'm thankful for the time to take in all of who Noah is (writing this as he's 15 months old).
While Jess was pregnant there were a few appointments that indicated a possibility of Down syndrome, but being the overly optimistic person I am I figured things would be fine. There were no definitive markers and thus it was just likely that since Jess was short our growing baby boy was just taking after mom with his slower femur growth ;) However, reality hit as the doctors were looking him over in the hospital and then it really sunk in after the blood results came in. My biggest fear in life had come true...I had a child with a disability.
It was an interesting first two weeks for me. Jess was busy with her nose in all the research she could find while I was busy reorienting my view on life. I was actually surprised that I wasn't more sad or broken up. Part of that might have been because he was just a little baby and in those first few days he was so tiny that anything we could do to make sure he survived was paramount. However, once we were out of the hospital (10 days after birth), it was time to really deal with his diagnosis.
Surprisingly, I wasn't too upset or completely disappointed with the results. I say surprisingly as again, having a child with a disability was one of the things I feared most in life. To reflect upon it now I don’t know where this fear came from. I had no bad experiences with children with disabilities, but maybe rooted in this lack of knowledge and experience was where the fear originated from. I, like many people, used this ignorance as justification to keep myself away from the special needs community as I grew up. Ultimately this unknown, subconscious fear manifested itself in both a selfish desire and a fear of the unknown. I can now clearly identify these as my desire for an easy life and my complete lack of knowledge about what to do. Once identified, I realized that these were personal issues I had to overcome immediately.
My desire for an easy life: I am not trying to be selfish with this, but who doesn't want the best that could come at all moments in life? No one grows up and wishes they had more hardship, that their life was filled with more challenges, or that they were Job from the Bible. We all see the results of coming through hard situations, but to seek out difficulty is ridiculous. Having Noah quickly let me know that things were going to be different than I had expected and I began preparing myself for the "new normal".
My lack of knowledge: I think this is one of the biggest changes and challenges that Noah will have to face. As his dad I, like most people, fear the unknown. It's not that I fear Noah, but not knowing what Noah can/can't do, what his life will look like in the future (what will his dreams be, what will happiness be for him, what will Jess and my life look like when he's 30?). However, this was also a pretty easy adjustment, in hindsight, because knowledge is power. Knowledge demystifies the unknown and enables you to move forward with purpose. While cliché, I believe it is this key that is also positively affecting our family and friends. Knowing Noah means not judging him by what you think you know, but letting him teach you and realign what you thought you knew about Down syndrome and disability in general. And it will be this hurdle that NONE of us will face to the extent that he will, but it's through our help that others come over this hurdle faster and more gracefully.
As I sit here typing today I'm back to my overly optimistic self. Noah's life has brought challenge (for sure) but it's also brought perspective, growth, learning and understanding. He's only 15 months and already there is so much I am grateful for. Which isn't to say that there are still moments I grieve for the boy he could have been without his extra chromosome, but those times will soon be a thing of the past as I fully accept and love him for who he is, not who I thought he'd be. As his personality emerges more and more I'm only falling more in love with him (as if that was possible). I can't wait to continue to learn from him and see all the wonders that not only God has for me to share with him, but the blessings he has for me.