When I found out about Ali’s pretty substantial bite issues, I was very sad and very discouraged and to be honest, I cried pretty much all the way home from the appointment (2 hours). I had to work very hard not to cry when I was talking to Ali’s aide at school about her bite and about the fact that she may be swallowing whole, what I thought she was learning to chew. When discussing it with her Speech Language Pathologist, I had to repeat to myself, “Don’t cry, don’t cry!” over and over again. Sometimes it’s hard to absorb this new information without feeling totally and completely discouraged.
But now that I’ve had a few days to think about it, I realize that it’s only her bite. It’s really unfortunate that after working for five years on feeding, it feels like we’ve taken a step back. But, it’s only a step back and in the grand scheme of things, Ali never learning to chew wouldn’t be that big of deal. Ali has Costello Syndrome. I am in contact every day with parents who have children just like Ali who are struggling, not just to chew but to survive. I communicate by private message with parents with children that are fighting cancer, I have followed blogs and communicated by email with parents as their children have lost their fights. I watch on Facebook as babies fight to survive heart failure and the entire Costello Syndrome family rallies around them and prays for their survival. Daily, I hear of stories of other children with Costello Syndrome undergoing biopsies, having invasive surgeries or getting very serious diagnoses. It’s not like I haven’t been there. I too have watched my child fight for her life. I sat and kept watch over Ali and wondered if it was the end. We almost lost her before she had a chance to start living. She survived but unfortunately, the reality is that a lot of children with Costello Syndrome don’t live to be 5 like Ali. So yes, I am sad that Ali’s bite is such an issue. I am sad that speech is going to be more difficult for her and that in the future we may need to make some difficult decisions in regards to her bite and that’s okay. But it could be worse.
Ali is a happy, healthy little girl and regardless of our daily struggles, she’s here. I am so thankful that she’s healthy right now and that she’s thriving. I may complain about the strict schedule we keep because of her hypoglycemia and I may seem really discouraged because she’s not growing. I worry all the time that she may get sick. I make no secret of the fact that I get frustrated with her visual motor issues and her neurological flare ups. I might even cry in the shower because my vision of Ali eating and talking just like all the other kids was just smashed to tiny little pieces but I know in my heart that I’m one of the lucky ones. I need to always remember that.