I have spent a considerable amount of time in the past this last week. Untangling the knots in my family tree. Obsessed in a way. Part of it is that I have always been a history geek. Give be a 1000 page Marilyn Monroe (We share a birthday.) biography and I won't come up for air until it's finished. I suspect the obsession this week was simply that what happened 100 years was easier then the present.
Be fore warned this is not a pretty finding inspiration and fighting on post. I am grateful yet angry and sad at the same time. More equipment entered our life this week. It's almost like the week of diagnosis again. Leg braces. I don't have the technical words down yet so bear with me.
I am so grateful to have this equipment to make Robbie's life easier. I am pissed we need to make his life easier. I am sad that in my head I worry it's happening to soon. That we are moving closer to the dreaded "end stage". I want to scream and rail at something, someone, God, the Physical therapist, the neurologist. I can't because this time my feelings have to go 2nd.
When we got the diagnosis we kept it from Robbie at first. We took time to really get our selves together before we started talking to him. He is fully aware of muscular dystrophy now. Honestly he isn't above using a "I have a muscular dystrophy question" stall before bed. He is nervous and apprehensive about the braces. So I have to fake it for him. I have to find a bright side, act like the blue camo and green came look good, I have to be okay so he can be okay.
Not that I am doing a bang up job of the whole thing. When we took them off tonight, he had the left the family room, I got up to put them away. Kelsey and I were watching some reality thing and she looked me right in the eye. She saw my brief moment of reflection as I looked at them in my hands. She just gave me a sad smile patted me on the hand and went back to watching T.V.
She doesn't know that was probably the most comforting thing she could do right then. I feel like on top of keeping it together for Robbie, I have spent a lot of time comforting other people. Sometime I want to scream. "I'm not a damn expert, just his mom!" I get it, lots of people love him. We all want him to be the kid that's I don't know the best at Duchenne's? At the same time I feel like sometimes I need to say I know you love him but I need time.
Honestly why did I just think of that? I get angry occasionally and it's not justifiable at all. I can't ask everyone to just know what I need from them. I think I really just need to be honest and selfish at times. There are days that being strong for him takes everything I have. I forget that I can say, no, I need time. These people that love him love me, I'm sure they would understand.
Okay this is starting to feel like a slow motion train wreck. So hopefully I got enough off my chest that I can get some sleep.
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