Leg cramps

Leg cramps.  Arm cramps.  My almost 8 year old sitting on a chair alone in the kitchen.  “I’m just taking a little break, my leg is really tight.”  When all the other kids are out running and jumping and keeping up.  I put him on my back and run around so he can finish the water gun fight, so he can keep up, so he gets a taste of the fast thrill of childhood he seeks.  He is slowing down. Too soon, I tell myself, too soon, I’m not ready for this.  There is no ready for this. I wonder when I’ll accept this condition of my son’s life.   I wonder when these moments won’t send me into a tailspin of sadness and loss.  I want to savor them, the giggles as we get soaked, the delight in his body, his voice, his smell, I want him to know childhood without this black cloud, I want to forget and pump our lives full of joy and laughter and delight, but I had to leave the party, the tears threatening to spill onto everyone’s good time.  

The car ride home is silent between my husband and I.  Intense feelings for a couple to navigate.  Hank in the back seat is over his momentary disappointment of leaving (we’d been there a long time anyway, and the kid was tired).  Silver lining Hank, “Wasn’t that a fun day, yeah that was a fun day! What were your two favorite parts?  Mine was the boat ride and the water gun fight!”  His sparkle and enthusiasm soften my mood.  But still, his leg is so cramped up he can’t walk into the house, or up the stairs to bed.  

How does your story start?

We do this thing at preschool sometimes when we grab a kids journal and we say, how does your story start?  And we write, we write exactly what the kids say.  Every time I am blown away at the poetry, the humor, the words, the imagination, the style of these kids.  Today I read their stories out loud and they loved it, we even read some of them over and over again.  Then tonight  I read this: "Write words and read them out loud. When you begin to hear yourself you will be so blown away by its beauty and ferocity."  -Marybeth Bonfiglio (You just got to read the whole thing! Here!)  

The kids loved hearing themselves, they were delighted, proud, blown AWAY, so was I!  Me?  I'm terrified to write like this, off the cuff, anything goes, intuitive....the courage of those kids, the DELIGHT in them.  This:  (from Marybeth again)  "Stop putting things off until you think you know what you are doing and you know what you are saying. How about just say exactly what wants to roll off of your tongue? Like honey. Like bullets. Like stars that shoot across the sky like cannons."

My boy is losing his muscle strength and we need a house that we can live in.  I can't carry him up the stairs very much longer.  

There's a way.

A very complicated way, one I'm not sure how to explain.  I'm putting it off.  Putting it off so I can do the laundry and the dishes and go to work and play with my kids and do regular mom stuff.  

Today at the playground he got so tired.  Today when his younger brother wanted to play baseball he couldn't keep up.  We had to carry him up the stairs to bed. 

Tick tick tick.  

"Because the onset of physical symptoms may be hard to recognize, it can be difficult for parents to accept or believe a diagnosis of Duchenne. At times a boy may appear to be improving, even as his muscles are actually deteriorating." 

"The most common fatal genetic disorder diagnosed in childhood."

"Because for too long they have been on pause, silenced, hidden. Scared to be seen in the doubts and the wonderings. Scared to be seen in constant flux. Our stories and the stories of all our grandmothers, mothers and daughters have been stuffed inside us for too long. They long to flow and be fluid. To rip through the valleys and crack open the canyons."

 Marybeth! Thank you, thank you for your encouragement, my voice needed it. 

{This is my story.}