It’s been one year (and a few days) since Clare was diagnosed with Williams Syndrome. And it’s almost been one year since we started this blog. In the beginning, I did not know how long it would last. I just liked the idea of journaling my thoughts and sharing them with family and friends. I didn’t know if blogging would be a phase. If we would get too caught up in every day life to maintain it. If I would run out of things to talk about. Apparently none of that happened! Because we’re still here. (And hopefully it’s a good thing that we’re still here!)
What a roller coaster year it has been. Ups and downs. The biggest downs by far have been Clare’s open heart surgery and those rocky days in the Cardiac ICU as well as learning of the recent deaths of two children with Williams Syndrome (one right in the next town over from us). Those are the moments that hit us hard. It brings it back to the forefront (with a slap in the face) how serious Clare’s condition can be. In those moments, I do allow myself to be scared and worried. I cry and hold Clare tight and pray to God that He never takes my precious girl from us. And Clare will usually look at me like I’m crazy lady and touch my face with one little finger. Then I’ll remember why this is all worth it, and that the ups far outweigh the downs. I could start to list them, but the list would be endless. Like this beautiful face!
Clare had her follow-up with her geneticist today. It was nice (in its own way) to have an appointment with a doctor where we waited almost 10 times longer for the doctor to arrive than the amount of time spent with the doctor himself. Nice, except for the restless baby! We are on track with Clare as far as medical care goes and what we should be watching out for, so the geneticist is giving us an entire year before we follow-up with him again. An entire year! Wow!
When Clare was first diagnosed, there were many dark days. I remember other parents of children with WS telling me, "The beginning days (and months) after the diagnosis are bad, but it does get better." That's hard to believe and wrap your mind around when you are still staggering from an incredible blow. When all your plans, hopes, and dreams for your new sweet baby seem destroyed. But you know what? It does get better. It HAS gotten better. I finally feel that Clare having Williams Syndrome is not the end of the world for her - or for us. It's just the beginning of the possibilities that are out there. Maybe that's because we are now open and accepting to the idea that we don't always get to make the plans of how our life is going to go. We can dream and hope and pray, but in the end, it's up to someone else, God. And I am glad He's in our corner!