(UPDATE BELOW) Tomorrow, Tanner will undergo a surgery that will, hopefully, prolong his life. But it’s a dangerous surgery, and he and his mom, my sister, have had to travel far from home and family for this surgery, and she’s scared, we’re all scared, and it’s hard. The struggle around the bullying before the holidays seems – for better or for worse – far away and insignificant; what matters now is that he get through this, that my sister gets through this, and that getting through this serves its purpose, that it yields more time with him, and good time with him.

Chrissie is scared, as I said, but she’s also resigned. In a good way, I think, which is to say, in a healthy way. It feels wrong to speak of resignation in the face of one’s child’s death as a good or healthy thing, but there it is. The better word, I guess, is acceptance. And acceptance is necessary, because Tanner’s fate will not change.

Still, still. It is so hard.

From Chrissie:

This is a test, a test of my strength and my family’s. Not of Tanner’s strength, he is the most courageuos person I know. He has not run marathons, nor done five Bikram classes in one day, and he can barely eat on his own now… but he is my HERO. I have done all of that in his name because I know the courage it takes for him and other children, who may not have DMD but who nonetheless face challenges, every day. Even on my worst day, I look at this gorgeous happy little man and I am in awe. Of the courage and strength and grace with which he faces each day. Mr Magoo, I love you.

Family is so important. I posted a picture today of mine, and out of the blue someone reminded me of how amazing my family was and is, the memories, of what molded me to be who I am… My parents, my sister, and all the of times we shared and laughed. My Mom and Dad gave my sister and I the world. They made us who we are. Thank you. Dad, you are always with us, with me. Mom, I can’t imagine a day where I cant talk to you… I strive to be that for my children. And to the friends in my life and the people I have met, I am blessed to have a list too long to name without making this note a few pages, but you know who you are.

And to Tanner, Booger, I love you. I know how hard it is every day for you. I know the courage it takes for you. To have lost your independance, slowly each day, to watch other children run and be free… I would lay my life down for you. So many people know you and love you..and others, well they will never understand the beauty and power of love. You have touched me and so many people… thank you, my baby. You were a cherub when you were born and you have blessed my life. xo

 

There are no words to add to that.

Please wish her love and strength.

UPDATE (from my mom):

Hi Cath

just talked to your sister – Tanner is out of surgery – he is in ICU but he appears to be okay.  He still has the breathing tube, but surgeon thinks it won’t be in too long. Tanner freaked out just before he went under – so his first words to Chrissi, after surgery, were “did I ask you if I was dead”.  In retrospect his freakout was probably good, because now the relief he feels about waking up is a big happy.

Love Mom