You know in the movies when a child is diagnosed with something horrible and there is this big moment when the mother breaks down in hysterics as her husband holds her? The music in the background is dramatic and everybody is impressed that the actors look amazing even when they are crying? Yeah, real life is nothing like that. Real life is holding it together while simultaneously shattering into a million pieces on the inside repeatedly not just on diagnosis day. Real life is forcing those tears to wait until your child is soundly sleeping before crying quietly and privately. Real life is mascara stained cheeks in rumpled flannel, and there is no such things as crying prettily.
Nope. This is nothing like the movies.
In the movies I would have time to have a breakdown and to lick my own wounds. However, in this house there are dishes to be done and laundry to be folded. If this were the movies, a magical investor would come along to find some mystery cure to this. Alas, hard-working families, friends, and communities are the ones who fight for A-T research. If this were the movies, I would be wearing some sort of power suit several sizes smaller than what I wear, lobbying for better insurance coverages, more research grants, and more assistance for families with special needs children. Again, it’s just me in my jeans advocating for my child daily here on the front lines. There is no fancy press conferences, just grass-roots efforts.
Definitely nothing like the movies.
If this were the movies there would be these explosive moments where my husband and I are besieged with grief and end up making magical love to heal the hurt. Instead there is a powerful camaraderie and complex understanding of just how deep pain can run. There is hand squeezing and strong arms for long embraces. In the real world, nothing short of a cure could truly heal.
No, this is certainly no movie.
Yet, I still long for a happy ending.