Being a special needs Mom (Dad, sibling, family ) is just hard. Not in the way some people think. Our life now has come second nature. Just like every thing else you do for awhile, it just is what it is.
The hard part is how different it is from what it used to be. I miss those times. We can't just jump in the car and just go. We have to think about if where we are going, is it going to be handicap accessible? Loading and unloading a heavy wheelchair and transferring Noah in and out of said wheelchair. In the past on many occasion we had to make the decision not to go somewhere and disappoint two little girls. Is too hot?, is too cold?, is it too wet? Or, sorry girls Noah is sick we won't be able to go today.
I have my good days and I have my bad days. Most of the time I can deal with everything in stride. Some days I let everything get to me and I sometimes feel I can't do it for one more day. I spend a lot of time alone taking care of Noah on a daily basis, while everyone else is at school or work. There isn't a lot of me time or even adult conversation. A few months back I went to my 30th high school reunion. It happened to be one of those times when I was feeling pretty down and was really needing some me time and adult conversation. I sat and listened to my former classmates go on about what seemed to me their perfect little lives. I walked home that night feeling more isolated and upset than I have ever been. While my former classmates were going on with their lives, I have spent my life trying to keep my son alive. Going to the countless doctors and therapy appointments over the years. My life is so much different....... It took a few days but, I bounced back and I came to realize that I'm very blessed to have family and friends that love and support me just the way I am.