So Owen is almost two! Can I just say how crazy that sounds to me. There are many days that it feels like yesterday and many that feel like we have Owen in our family for forever.
The older Owen gets the further the developmental chasm is between him and his peers around the same age. Most of the time because of how little Owen is and the fact that he is non verbal I see him as younger than he is. Developmentally he is around 12 months old and guess what? I love it. I get to have this beautiful kid melt into me every morning with a sweet smile on his face. I get to stay in that "baby" stage a little longer with him. He still seems like a baby sometimes but then there are days when he seems like an almost two year old. He pushes his brother and sister over when they take his toy. He smirks when I tell him to stop while he is bolting for the dog dish. He knows he is adorable and plays it up like any other almost two year old. He has started stranger anxiety when we leave him in nursery or with a baby sitter. He is amazing.
So here is the dilemma. I recently read a statistic that 100% of people with Down syndrome have some degree of Alzheimer's by the time they are 50. I don't know the validity of this statistic and I am not claiming to have read any studies in reference to it. There was my disclaimer. :) However I have thought about it. I have thought about the fact that I would hate to lose Owens mind to this disease. It is a sad illness and hard on the person with it as well as friends and family of them.
This is for my non DS friends and family, a little info for you. There are supplements specifically formulated for people with Down syndrome. They are made to combat certain ailments that go with Down syndrome. One of the examples is Alzheimer's. Some help with speech, some help with certain stimulation seeking behavior. There is a plethora of info out there. I have done some reading and research on this. I also, referencing back to my last paragraph, know people with Down syndrome who are over 50 who have not been diagnosed with Alzheimer's.
But here are my thoughts. I know this is going to seem very foreign to a lot of people, including those in the DS community. I am ok with that, actually if it was not me saying it I might think it's a little out in left field to some degree. This is coming from a place of my belief system that God wrote each and every day of each of our lives down before we were even born. We all have free will but we also have a predetermined time. Again, I get that this concept and belief sounds ridiculous to some. It does not to me. So when Owen was formed in me God already knew exactly how he was knit together and what he would do in his life. There is this amazing verse in the Bible found in John 9:3. There is a blind man whom Jesus eventually healed but before he did his disciples asked Jesus...who sinned, him or his parents? Clearly there were under the belief that there must be someone to blame. This man had been blind from birth. And this, this is how my God answers!
"Neither this man nor his parents sinned," said Jesus, "but this happened so that the works of God might be displayed in him."
I love this! God always works good for those who love him. How awesome is that?!
Back to ailments and development and delays. How far do we go? How long do we push Owen to be as close in development to his peers as he can be? Where do we draw that line? What if God knows what that he will get Alzheimer's at 52? What is the typical kid next to him also has a genetic predisposition to also have it? How proactive will his parents be with no guarantee that anything will change that?
These thoughts are swirling in my head, over and over. Our family has been through a lot in the past 9 months. Most people have no idea what all we have been dealing with and honestly I am not comfortable sharing with the world. What I do know is that we are stronger than we thought. I know that you can think you are prepared for almost anything and then the floor drops out beneath you. I know my kid will never be at the same level as his peers across the board. And you know what? I love that part of him too. I love that he touches people in the depths of who they are because of how God created him different from lots of other kids. I don't know what his, what any of our, future hold but I know without a doubt that we are not alone on this journey. I don't know when or if we will start those supplements, we will make sure to keep Owen, and Paige and Blake as healthy as we can. The rest is in God's hands.
