From my sister, on Tanner’s 13th birthday, which is today:

Tanner is 13 today and with each passing year it gets closer… yes, birthdays are a happy occasion but for some of us, there is a clock that shadows it. He has been sick this past week, a simple cold most children get over in a matter of days, but for Tanner it has hung on… his weak lungs not able to expel and fight… so we wait… he has improved this time, slowly… after countless nights of pounding his chest and back… willing his lungs to work… but what happens next time? And when? When? The question has haunted me this week…

Even my closest friends haven’t seen the darkness that haunts me, because I don’t talk about it… and I try not to stay there, because life is about hope and faith and laughter and joy. He is here now,  so for now I put on a happy face and soldier on. A mom whom I have never met had the courage to share her journey with her dying child….the good, the bad, the ugly… the things that most people don’t speak of, that most people are uncomfortable hearing… unless they know. Looking at your child and knowing. When Tanner was first diagnosed, he was still walking, he was still ‘normal’ and we didn’t have to really face it. It was there but it was not tangible yet… it didnt seem real. So it was easy to talk about hope and faith. It’s not so easy now. It is real. The disease has weakened his muscles past the point of return.  Now we don’t talk about hope and faith – we talk about time, acceptance, strength, courage.

Today, I don’t feel so courageous… I cried, really cried.

People use the term ‘life limiting’ disease these days and more than a handful of professionals have said it to me this past year….Tanner doesn’t have a life limiting disease, there is no such thing. There are no limits in life and he has been blessed with  people, opportunities, and experiences that sometimes make up for everything else. Sometimes. For brief moments of time we have been able to forget the clock and cherish every single moment, but it still ticks… it is still there. And there is no politically correct term for a dying child, as I finally pointed out to the last person who said ‘life limiting’ to me. Tanner has a disease and it is terminal. Terminal. There is no stopping that. There is no way to sugarcoat it or put a positive spin with different words. And it doesn’t make me feel better.  In time research may find a cure or a treatment for DMD but there is not enough time for Tanner, he doesn’t qualify for new therapies given his condition now and his particular gene deletion. I know, we know.

Mary Tyler Mom shared her journey and her words. She is right about the things we hope for, that they change. And some days there feels like none, I can’t run or paddle away from it. It is what it is. I hope that I will survive, today I had to dig deep too… and fight back tears.

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I can’t fight mine. That is all.