You know when you have kids, you think to the future and have an idea of what you think it will look like. As the kids get older you think of the new freedom when they can stay home alone and you can go out to dinner without so worry. Well obviously that doesn't happen for those of us who have children with Duchenne and it is a hard pill to swallow. Lately I have had a rough time swallowing that pill and I have friends who are too which honestly doesn't make it easier because it is one jagged little pill.
As Wyatt gets older it gets harder and harder to leave him for longer periods of time. A few months ago we gave him a little bit more freedom by getting him an apple watch.
It allows him to feel better about being alone and it lets him call me if he needs me. The other day while sitting at our neighbor's house having a cocktail and watching the football game my phone rang. "Mom, I made it to the bathroom but I can't get up and I need your help. Can you please come back? I'm so sorry I wish I could do it myself." As I walked over to help him, I felt upset and aggravated that we are in this boat and then I felt upset with myself for feeling that way. I walked in with a smile and while helping him I took a deep breath and let go of my frustrations and accepted this next step in our life. I love this boy so much so why do I feel aggravated at times, why do I wish for life to be something else. I know I am the mom who was picked for him and there's no one else who could do it better but as he gets older the needs get more and get harder.
Once I get him situated I look into those bright blue eyes and he says "thanks Mom for helping me. I'm sorry I needed you." I give him a hug give him a kiss with tears in my eyes. He says, "go have fun with your friends." I smile and hug him again and then beat myself up on the walk back to see my friends.
This life is hard and getting harder. I have friends, family, and a counselor who can help me through it but sometimes it just gets to be too much but I know I was made to be his mom and there's no person I would rather be.
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