I've found in the last year or so it gets harder and harder to share the thing I'm feeling. Maybe it's not even how I'm feeling i think I have pretty much well documented that. I think it's more like Robbie isn't five years old anymore. He's eight and duchenne is a louder and more disturbing presence in our life.
I guess it could be denial a little. Not that denial has ever done anyone a lick of good. You know I see his calve muscles getting bigger, I hear his stutter, I filled out the handicap parking pass form, but actually putting into word that duchenne is now visible in my son? That makes it real. that makes me terrified.
Three years ago I could think "we have time." or "We have 7 years until a wheel chair." but now? It's four years away if we are lucky and I'm panicked. There is so much I still want to do. What if I am not as strong as those other blogging moms? Simple honest truth I don't want to do this. Am I allowed to say that? I mean who wants to do this?
I say I don't want to do this not in an I quit way. I will do this and be as strong as that little boy needs me to be but I'm human. Today we got new ABO's (leg braces) They are big and obvious and there is this wedge and he is going to hate wearing them to school. What the hell am I supposed to tell him? How do I make him feel okay about it? Oh and he has to ease into wearing them while he stimultaneously eases into the new night onesI'm not sure how many hours other people have in their days but how I am going to ease him into a total of 4-8 hours between the two during the 5 hours he has after school? No more playing outside? That seems unfair.
I think when your dealing with something like this you have moments where you feel good and happy. I mean we have pretty happy and fulfilling life but then your getting xrays and braces and you wonder just for a second why can't he be okay? I just hate to see life be so hard for him. the nights he's scared and feeling lonely and I hold him in my arms and I feel so damn useless because I am so powerless.
Mom's fix things.I turn a pound of chicken breast into chicken Parmesan. give band aides and kisses. I give my tween advice and listen to whatever is bothering her, I listen to my kindergartner read annoying books about Taco the dog and help her when she is stuck on a word, I make their life easier. How do i make his life easier when it feels like we are running some terrible race with new impossible obstacles all the time?
2 am posts are usually the best for crazy grammar and typos so sorry for that. They tend be the most honest and raw too so special apology to my mom who will hopefully reads this after work.
