Wednesday, August 6, 2014

It doesn't get easier...

I used to dream of a day that it got easier. Easier to be the one that walked, with the [mostly] working lungs, that could talk and move and dance. I used to think that being the one that "wasn't affected" was easier. I used to think a lot of things.

I think part of my "thinking" was always in things I was trying to convince myself. Granted I'll never know what it is like to be affected by MTM, I can only observe Javad's seemingly unwaivering chillness with 99% of everything. Today I am not okay.

I've said before, and will probably say again, I make a point not to get connected. I can't help but be attached to Javad, he is my brother after all, but I've been selfish and tried to prevent myself from getting attached to other people in the MTM/CNM community as well. I didn't want it to hurt. I didn't want to feel it if something happened. Well something happened today.

Just over a year ago at the conference I met the most amazing family. For one of the first times I did just feel like my expertise of being a sibling was needed but that I was needed. I spent most of the conference with this amazing family, bonding with the sweetest boy in a way I haven't bonded with another kid since my own brother.

We joked that Louie was my boyfriend. He'd flirt and smile at me, I'd hold his hand every chance I got. We cuddled and I talked while he looked on. He's a tiny, only a couple years old, but I felt tied to him in a way I can't explain.

This morning I got back to my desk after a meeting to one of the worst texts I've ever gotten. Louis had gained his wings in his sleep. A part of me broke. A part of me is broken. This part of my heart that I have protected for so long poured open like a flood gate and for the rest of today I have cried and struggled to hold myself together because this little boy that could barely hold my hand held a huge part of my heart.

I use to say that each death didn't get easier but it didn't get harder either. I lied. Not just a white lie, but a bold faced lie. The longer I am in this community the more invested in their lives, in our lives together, I get and the harder it gets. In the 10 years since Javad's diagnosis I have never been hit like this and I don't know if it will ever get better. I don't know how people get better from things like this.

Marie, Louie and Me

I think it was love at first sight from both sides

Louie and I at the conference

Louie and I at Where There's a Will There's a Cure Golf Tourny

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