Every once in a while I will see a mom and her kids. Usually it's a boy older then Robbie and he's running or lugging groceries for Mom, or even carrying a younger sibling. I stop and I realize that I will likely never have that w/ my son. I know I shouldn't wish for another's problems yet I can't help but wish that was my life. My boy that gets to grower stronger instead of weaker.
What if he was just 6? What if there wasn't a mutation in his genes? What if I didn't have to worry about his gym class being too much for him? What if I could watch him race his sisters and win? What if he could walk flat footed, climb stairs, and run? How I wish he could run. Robbie would love running.
Of course I know what a dangerous path those thoughts lead me down. I know to be grateful for what I do have that somewhere someone is wishing for my life. I cant help but envy those that will never walk this path.
I miss peace. At least I think I do. Life has been hell for us. I see Robbie's disease progressing and I mean it's too soon. It scares me. I just am not sure that I am strong enough to lose my baby. I mean every single damn day I pray for a cure, a treatment,anything. Every night I go to sleep knowing today wasn't that day. I just fear the day it's too late. The day I pretend wont come but I know will come if something doesn't change. I fear goodbye.
I am not doing great. Shelby is not doing great. We are living our own personal hell. It never stops. Life just won't give us an inch. Not a moment of peace. We couldn't even have a nice normal Disney trip. I feel like everything we touch gets broken.
I love my kids so much. I need to find my inner strength. I need to fight through this cloud hanging over us. I need to find a way to embrace what is. I need to be able to love today even w/ tomorrow hanging over me. I just wish I knew how.
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