Mine and my families life is extraordinary. It's not at all the ordinary life Shelby and I mapped out, it's not a gothic tragedy, it's not all rainbows but not all clouds either. We are living life under an extraordinary burden. I think sometimes it feels like we are spinning our tires stuck in the mud trying to make extraordinary fit in an ordinary box.
It's hard to be different, it's hard to explain how different our life is even to the people we are closest too. Sometimes it's easy to articulate other times we are sad or angry because we don't know what to say or do to explain what is going on. Being extraordinary can be isolating. Being isolated is draining.
We have reached the point in this disease where Shelby and I have to start making hard decisions. We are making housing and medical decisions that I won't bore you with but they are certainly not the decisions we envisioned making at this stage in our life but again extraordinary lives mean extraordinary decisions.
There is so much the rest of the world doesn't understand about living with Duchenne. The toll it takes on a child and their family. The guilt a mother feels, the frustration a father feels, the responsibility siblings feel, the anger and fear Robbie feels. It can feel like an extraordinary weight at times. It's easy to get caught up in that and truthfully we do have those times.
It's hard sometimes to admit the pressures illness can put on a family, on parents. The times my girls want to do something but know they can't because they can't do it with Robbie. The way Shelby and I have been cast in this role of like case manager. We are always fighting or discussing, or explaining, and it can make us feel so incredibly frustrated. I know it's not the fault of other people that they don't understand the unique intricacies of this rare disease. I just wish people.myself included, could muster just a smidgen more empathy.
I didn't intend to make this super sad although that seems to be where most of these posts go. Our life is also extraordinarily beautiful. Every day Shelby, Kelsey, Madi, and I get to witness strength and courage in the flesh. We tell each other "I Love you" all the time. We laugh as much as possible every single day. We fight an extraordinary fight everyday. It can be exhausting,frustrating, beautiful,sad,happy, and always extraordinary
It's hard sometimes to admit the pressures illness can put on a family, on parents. The times my girls want to do something but know they can't because they can't do it with Robbie. The way Shelby and I have been cast in this role of like case manager. We are always fighting or discussing, or explaining, and it can make us feel so incredibly frustrated. I know it's not the fault of other people that they don't understand the unique intricacies of this rare disease. I just wish people.myself included, could muster just a smidgen more empathy.
I didn't intend to make this super sad although that seems to be where most of these posts go. Our life is also extraordinarily beautiful. Every day Shelby, Kelsey, Madi, and I get to witness strength and courage in the flesh. We tell each other "I Love you" all the time. We laugh as much as possible every single day. We fight an extraordinary fight everyday. It can be exhausting,frustrating, beautiful,sad,happy, and always extraordinary
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