It's strange how some things, and or days hit you. People will ask about Kiera, its usually "How is she doing?" I know they really don't want to know, they are just being polite. There are days that I give a simple answer as well like, "She is doing fine" now I say "She is doing well today" the topic usually ends there. People that ask really don't want to know the details, is a matter of fact, more times than not my friends don't even know when she is in the hospital any more. The friends I used to have when my children were young are not around or at least not much anymore. Don't get me wrong, I am not by any means blaming this on Kiera, it's this life I was dealt and people just don't know what to say or do. The friends that I have made after my children were born are mostly because of Kiera, but most I have not met face to face. The contact list in my phone has more Doctors names than the average person I am sure. My medical vocabulary is boring to most maybe because people don't know what the heck I'm talking about. Of course Kiera has a few constant cheerleaders that in return are my support as well, I cant thank them enough.
My son sat in the living room about a year ago and asked me why I am not upset that he is not more involved in Kiera's life, I can't understand why he would ask this, I don't expect anyone to be involved in her life but my husband and me. It's been 24 years and as the years go by our life gets more and more isolated and I suppose it might be because Kiera's life is getting increasingly complicated that I am more absorbed with all that goes on, so that in itself is very isolating. I am not writing this so people will feel sad or bad about this life I live, but I know the ones that do live this life will and can relate. As sad as this is going to sound I am happy that we have found more families that are effected by CDKL-5 even though there are not many, but together we support each other and do really know what it's like day to day. There are good days and there are not so good days and I know those families are always going to be there.
Many people call these families their CDKL-5 family, I understand that so well.