Exactly one year ago, On April 29th, 2010, I got the phone call telling me that Dallin had been diagnosed with Williams Syndrome. He has changed so much since then, it's hard to remember what it was like; not knowing why he wasn't growing, or crawling, or walking or talking.
I do remember that day very well. We were in St. Louis along with most of the rest of the Crapo family. My sister Sarah was getting married on May 1st, so we had driven to St. Louis to be there for the celebration. It had been a busy day of driving around town with my mom and sister running wedding errands, like finding goldfish and buying pond plants... you know, the usual wedding stuff. We were all home for the evening and after eating dinner, we were all (about 20+ people) watching The Office on TV.
My cell phone rang, so being at parent's house, I went outside onto the deck. Their house is a black hole with no cell phone reception and your best bet of hearing a call is outside. On the phone was Dallin's pediatrician. He said he had been away from the office for a few days and was wondering if I had heard that Dallin's test results for Williams Syndrome came back. I had not heard so he told me the results: Dallin had tested positive for Williams Syndrome. I don't really remember much else of what he said. I was just trying not to cry and to really wrap my mind around what he just said. I'm sure he was giving me a few facts about WS, things he had just looked up in the 30 seconds prior to the phone call, things I already knew and read about months before. He said that we could meet with him as soon as we got back into town and he could give us some more information (which turned out to be one tiny paragraph copied from a medical textbook, very informative!) and refer us to a Geneticist who would be able to tell us more. I hung up with him and went back inside the house.
I was wasn't quite sure how to react now. Everyone was still watching TV, laughing, totally oblivious to what was going on. I brought Mckay to our room so I could tell him the news. When I told him, I couldn't keep from crying. It's not that I was really that sad. I was actually very happy to have a diagnosis and finally have some understanding of what had been going on with him. But I was worried and nervous about the future. Along with the diagnosis came a slew of other possible complications common with WS: Thyroid problems, kidney problems, eye and ear problems, mental disability, behavior and social problems. Dallin might have more than just a heart condition and trouble gaining weight. There were a lot of emotions to process all at once and the only way to do that was crying. Mckay and I talked about a few things and decided that we should wait until after the wedding to tell people about the diagnosis. We didn't want anything to take away from Sarah and Nate's beautiful day. And it helped to give us a few days to research it more and wrap our heads around it better before telling others about it.
The wedding was wonderful, and it was a great time to reflect on the importance of family and how lucky we were to be chosen as Dallin's parents.
At the wedding reception I saw many old friends and acquaintances. As I told them about our life and how we'd been, it seemed weird not telling them about Dallin having WS. At that moment, it seemed like such a huge part of him and part of our life. Thinking back on it, I realize that it didn't really matter that we hadn't told people. WS didn't change that Dallin was our son. Knowing about it didn't make his heart condition any better or worse. Having a diagnosis didn't suddenly make him start gaining weight. He was still the same amazing little boy with the same struggles, but now we had a name for his struggles.
Over the next few days after the wedding, we started telling our family members about Dallin's diagnosis. By this time we were able to think about it very positively. Now that we knew why Dallin was having those medical problems, we could help him better. We told them that Dallin would continue to have many struggle later in life. We also told them about the wonderful parts of WS. Dallin's very pleasant personality and infectious smile were a direct result of his WS.
It's been a whole year and we've come so far. Dallin is doing so much better now through the help of therapists, doctors, and through the patience (and prayers) of his parents. He is crawling, almost walking, starting to eat food, saying a few words, signing more words, and his cognitive abilities are growing. He is doing very well with his heart and kidneys, and while there will always be new surprises popping up to deal with, his doctors are happy with how he is doing. We have been able to connect with other parents of children who have WS and it has really helped in understanding what Dallin's future will hold. Last year, just weeks after his diagnosis, we were able to participate in a Walk for Williams Syndrome. We are very excited to participate in Indiana's Walk for WS this year in 2 more weeks and we're excited to meet more people. We have the wonderful opportunity to be interviewed by the local news channel next week, and hopefully there will be a story on the news about Dallin (and another local girl with WS) in an effort to promote awareness of WS.
Dallin continues to make us smile every day. I'm constantly amazed by the things he is learning and how much he is growing up.