I try my best everyday to be positive, to focus on all the good and look to the future with no limits. But, in an instant that focus can be lost. In an instant the pain of my reality breaks through the barrier I have in place to keep it at bay. If for only a brief few moments I have to allow it to flow through me so I am able to find the strength for tomorrow.
This evening a fellow CDC mom and my friend posted a wonderful video of her beautiful little girl taking steps. As I watched, the excitement started to build in me as I called my husband to come enjoy this magnificent moment with me. Although, not “my” child, from a distance it is also my triumph. It’s a journey we share together!
I became so emotional the tears started pouring out of me, I can just feel how proud her parents must be. She has come a long way in such a short time. It really is amazing to watch. This amazing child is the same age as my child with CDC, sharing our children’s accomplishments is a crucial part of the coping process many of us special parents have.
As I watched intently with what seemed like a never ending flowing river of happy tears this magnificent child takes an object and puts it in a bag as asked.
It only took an instant and it all changed. Suddenly I was crying with pain. There was that huge dark knot in the pit of my stomach, the one you get when you feel like it’s too much for you to bear. Although extremely elated for this family, my pain flourished.
I know I should never compare my child to any other because she is unique. The reality is that I am desperately awaiting the day my child learns to use her hands. It’s been so hard because to this day she still has to be reminded she has to use her hands. I do my best to only focus on what she CAN do but, it’s hard.
Chronologically my child is 28 months old, but developmentally she is between 8-11 months. So I have to consistently remind myself to breath and take one day at a time.
I am so happy to have the opportunity share the wonderful moments with my special families even from a distance. I imagine it’s a normal reaction to wonder when will it be my child learning to walk or to use her hands. The truth is, it won’t happen until “she” is ready; so I let myself feel sad and I cry and cry and once it’s out of my system, I’m good. It’s important to cleanse the soul every so often. Otherwise, I would have lost my sanity a long time ago.
I’m so happy…but so sad and these moments are always so bittersweet!