Illness Is Uncomfortable

My life makes you uncomfortable. My life is difficult to look at. It is hard to see and it is impossible to imagine.

I think most moms with a child who have a rare disease go through a period of ‘normalcy’ where we remain innocent. We all carry expectations for our children’s future. We expect tantrums and school plays. We expect first dates and broken hearts. We expect proms and dances. Maybe our child would be a little rebellious, like we were. Really, what is the worst that could happen?

I considered myself a pretty decent hypochondriac when it came to my pregnancies. I was an old mom, so aside from the things I would allow myself to imagine could go wrong, I had the things that actually could go wrong. And yet, I failed to imagine this.

It is a beautiful, warm summer night and the streets are filled with teenagers laughing and flirting. There is a hockey game going on in the circle. Earlier, the grills were fired up and the smell drifted through the neighborhood. In the nice weather, my neighborhood comes alive and my eyes are open to the life on this street. I am acutely aware of the sound of my daughters life-long, best-friend who lives two doors down. I used to hear her voice in our house, often. Our house was a pretty cool place to hang out. Our house was usually filled with the voices of this neighborhood, but illness is uncomfortable. Anything outside of our expectations becomes uncomfortable. We don’t expect, that suddenly our best friend can no longer come out on an amazing summer night and play Manhunt. We don’t expect that one day a fellow student will just fail to show up at school and that the school will not address this because “rare’ is so far off the grid of sympathy.

If this sounds like a tale of woe, that’s because it is. Just a few short years ago, my daughters would have been among the chatter and the laughter on this beautiful, summer night. There were no wheelchairs. No surgeries. No medications. There was every single possibility that life would always be ‘common.’

So, we have many more warm nights left, many more experiences that are forever behind us. What is a rare mom to do? Sometimes I cry and sometimes I rage, but most times I just enjoy the wonderful moments we have every single day and I battle on beside my girls.