Having a brother with special needs is a burden.
I know no one will like to read that. I know mothers of children with special needs and children who are more typical will particularly hate that I wrote that. I know that parents without special needs children and adults without children and grandmothers and uncles and maybe even our neighborhood mailman will hate that I wrote that. You probably hate that I wrote that.
I hate that I wrote it.
But it is absolutely my truth and if nothing else, I promised myself that when I wrote here, I'd be truthful.
I had a brother with special needs.
It is not that my brother himself was a burden; but his circumstances created burdens in my life. Burdens--those heavy, difficult, unwieldy, slippery clingers--are plunked down on all of us. Being a sister to a man who possessed a myriad of developmental disabilities is a burden that I still carry; even though my brother has been dead for almost 4 years.
I hold onto the burden because to let go of it would be to let go of the blessings that come with having a brother with needs. And if I drop the burden, I'll drop the blessings. Since my brother is gone, it is particularly critical that I hold on tightly to it all, because without the burden and the blessing I am left with nothing but dust.
When I was a kid, the burden was explaining him, waiting for him, defending him and then, being left to figure out my life on my own, while my parents cared for him. I still feel guilty even needing one second of their attention--and in turn, when my mother now tries to give me attention, I am not even sure what to do with it. As an adult, the burden was explaining him, waiting for him, defending him and then, being left to figure out his death on my own.
It is a burden to feel forced to explain what a burden it is to have a special needs brother. I don't even have him anymore and still, I am saddled with these heavy weights--the expectations that I would love my brother completely and perfectly or that I would be traditionally successful because he could not be or that I would smile and be brave and strong and sacrifice my own life for his.
And in the end, it was my brother who died. It was 4 years ago today that he choked and so began 8 days of living in-between life and death in the ICU.
Carrying these burdens exhausts me, but I hold on tight to them because they are so mixed up in blessings, too. There is the blessing of knowing firsthand how deeply God loves everyone--even those among us who never learn to read or write or speak. There is the blessing of learning to see beyond disability and always being able to see the potential. There is the blessing of learning that speaking does not happen with words and one can have a conversation with their brother and never actually say anything, because the sibling connection runs that deep.
There are blessings and burdens worth holding onto because it means I still get to hold onto pieces of my brother.