Williams Syndrome Wednesday: Some things about having a baby with a rare genentic syndrome…
…that you maybe haven’t given much thought about. This past week we had the 1 year anniversary of Obi’s homecoming after 25 days in the NICU.
We had no idea the journey that lay ahead. Realizing that Obi was not coming along like a typical baby, identifying possible causes and bringing them to her doc’s attention, wading through genetic testing, learning her diagnosis and diving into the steep learning that comes with a complex syndrome like Williams – what a year! I was inspired by this post today on Cheering on Charlie to share some of the thoughts and experiences that have stood out for me so far.
1. It is unbelievably isolating. Charlie’s mom mentioned the same about her micro-preemie experience. In my case, not only are the other cases few and far between, but because it’s a spectrum syndrome, no two cases manifest in exactly the same way. While there are many people who want to help and want to listen, at the end of the day, it’s a journey one undertakes alone. No one else can really know what it’s like. Even my DH and I are experiencing it differently.
2. There is a vague understanding about what her life will be like, but there is no one road map that you can look at and say, I understand how this will go. While this is true for all kids, there is a widely accepted norm for typical kids that is simply absent. Of course no one knows what the future will bring, but I really, really don’t know. It makes living in the moment incredibly important and horribly difficult.
3. There is worry and fear unlike anything I experienced with my typical baby. There is worry about every meal, every sound, every movement. As each and every baby we know flies past her in development, those that are the same age, those that are 6 months younger, the impact of her condition becomes more tangible. What will this mean as the months turn into years? There is fear of tomorrow, next week, the week after that and every week from today until the end of my time, and then there’s the worry for the time after that. It is ever present and unrelenting.
4. Knowing she will always be ‘different’ is a hard pill to swallow. As someone who has always been a little odd, one would think I would have an easier time embracing this. And yes, I have hoped for my kids to be the ones who march to the beat of their own drums. But knowing she will have no choice in the matter, that children may point, that adults may stare or worse, that people will avert their eyes and look past her, and that she will have no ability to fade into the masses if that is her only wish, makes me sad. I have read that lots of individuals with Williams Syndrome are wonderful, bright and loving and people are drawn to them but not being able to picture just what her version of Williams Syndrome will be at 8 and 16 and 23 and 40 – I fear that she will feel her difference and experience isolation and loneliness because of it. I hope I am so very wrong about that.
5. There are moments of mind blowing clarity when I look at my little critter who seemed to defy the odds at every turn. She fought her way into existence. and continues to fight to conquer even the tiniest milestones, ones so small you don’t even notice when a typical baby just sails though them. She proves every day that while, she may be a mystery, she is no mistake. She, just in being, makes me want to be better. If I could have half the fight and determination she’s already shown? Well, I should be so lucky.