18 June 2012

This was how I started writing today.  Pretty ugly and very, very sad.  Julia and I came back from bike camp, meditated/napped, and then played with her ipad until her first therapist came.  The day got a whole lot better after the nap -- even though it was at 9:30 a.m.
Gotta’ be gentle with us.  The beginning of July is coming up and I need to plan for miserable.  With misery, at least for me, comes frustration, self-pity, and judgment.  None of that works well for Julia and I.  Gotta’ be gentle with us.
Yesterday, I wrote in pencil the thought that was running through my head: today is one of those days that I need to chose not to be miserable.  The temptation of the slippery slope into doom and despair looms large and I know that there is a long, steep slope staring me in the face.  Chose not to be managed by the pain but to sit with it.  Sit still without losing ground.  I feel the coming.  July looms.
Julia is being particularly hard right now.  She is not listening!  Not listening!  How many times can I ask, say, request, beg, yell!!! before she responds.  I feel like I am yelling all the time.  I plan for more time to do things, to get places, but there is no way of planning enough time.  I feel like my predominate tone of voice is raised and angry.
So much for frustration.
Bike camp.  Julia is moderately excited about starting.  She willingly gets on the bike and begins to peddle.  Right now, after 20 minutes, she is having a hard time peddling quickly enough to keep it going.  She keeps stopping.  She does not look where she is going, She looks down and behind.  She looks where she has been.  She misses turns and bumps into cones.  She rode, albeit very slowly, into the wall.  She has more core strength than ever before, but I wonder if it is enough to keep a bike going.  She also keeps chattering about the dinosaur exhibit that she saw in the exhibit hall last winter.  She chatters in part because she is nervous.  Most of the other kids are going quickly enough to cause their volunteer to jog along side or behind them.  Julia’s volunteer strolls and needs to prompt Julia to begin peddling again.  80% of kids are riding a two wheeler by the end of the week.  Today, I am feeling Julia may be in the remaining 20%.  There is a girl who is attending the camp for the third time.  She is doing well right now, but I hear the transition to a real bike is what is hard for her.
Reading through, I think that I did not avoid the slope.  It is my resilience that goes first -- no plan for Julia not listening, seeing only the possibility of Julia ending up in the 20%, and I am feeling sorry for myself.  David was in that 20% of transplant patients who do not survive the first year.  Damn  20%.  
This is more about me than Julia.  If I can, I will take a step back, take a bit more are of myself.  If Julia needs another year of bike camp, then she can have it.  Time after time, I want her on some preset schedule, and she is definitely on her own.  

1 comment:

Traci said...

Sitting and enjoying you as I enjoy my morning cup of joe. I'm so sorry that it's so hard.

I love you.