This girl!

This girl!

Friday, April 28, 2017

The need to fit in.

Why do we seek to fit in somewhere, anywhere? Maybe it's human nature to want to identify ourselves with someone, share the same interests and even the same struggles with a group of people so we don't feel so alone. This is especially true when you have a special needs kid, suddenly the number of people that share something with you gets smaller and harder to find making you feel even more alone.
My beautiful Sophia is really special and not only because everyone is special in their own way but also because genetically there's no other person like her (read here). When she was born we were given some literature about chromosomal disorders similar to hers which gave us little to no sense of what to expect because the range of characteristics were so wide. At that time I was not thinking about finding support, I guess, because everything was so new and I was focusing on getting through all the surgeries she had during those first years. But then time passed and I started feeling alone as I was struggling to find others whom I could identify with, even with the number of support groups that can be found on Facebook and other social media I was feeling alone. I found epilepsy groups, feeding disorders groups and speech groups where I could find answers to specific questions (which I'm grateful for) but still once my question was answered all the other things about Sophia, the beautiful and the also the difficult things about her condition would separate us from everyone else. I recently found a general special needs moms' group and I see posts from parents of kids from all kinds of different backgrounds, different diagnosis and different challenges but then I realized we all have something in common, we all want our kids to reach their potential, to be happy and we all fight really hard to make sure they are getting their needs met. I realized that although it's important to find and meet people to share the same experiences with, we should not let the different diagnosis or different struggles divide us but bring us closer together because we all do have one big thing in common: we are all parents of very special kids.
Maybe someday we cross paths with someone with the same condition as Sophia but in the meantime I am going to do my best to not let that feeling of loneliness stop me from enjoying the uniqueness of my beautiful daughter.

1 comment:

  1. Yes, you are taking the right path in thinking we do have a common bond. We rarely meet other kiddos with Angelman Syndrome but I know other special needs parents "get" my life when others do not.