Knowing

I don't know what its like to have a childhood under the shadow of terminal illness.  I will never what it's like to ask my mom if people die from this thing happening in my body. I don't know what it's like to take steroids and have them make my life miserable while they work to prolong it. I don't know what it's like to watch steroids ravage my brother's body changing his appearance and his moods. I know my kids have a bond few get with their siblings, I know my girls have shown grace where they could rightfully be jealous and I know my son has a strength few adults possess.

I know what it's like to be given only hope in a hopeless situation. I know what it's like to hold a marriage together when a diagnosis breaks you in places you didn't know could be broken. I know how hard it is to hold your spouse while they are racked with sobs and have no words of comfort and I know what it feels like to be the spouse racked with sobs.  I know what it's like to sit in a meeting knowing all these people talking about helping your son will need to be reminded at least once a month about what you agree on.  i know what it's like when you are suddenly cast in the role advocate with no warning and no training.

I know what it costs this family every time we have to explain steroids to people that don't live this life every day. I know to respond with a hug when the world says "spank that child." I know what it's like to hold my tongue when someone tells me now is not the time to think of Duchenne, the future, the deep dark abyss of sadness, steroids, because it is not reality for them.

I know I can be annoying and loud. Selfish and unbending in my desire to be honest but I know it's Robbie's only chance. I don't share my families pain because I enjoy the world seeing my ugly parts. I share our pain because it is real. It's not an inspirational story of finding strength. It's 5 people connected my marriage and love not rising from the ashes but existing in the ashes.