Friday, October 18, 2013

how we're going

Well, the chronic pain team at the hospital has graduated Ben from their program. I feel in equal parts abandoned and relieved.

Abandoned, because Ben still has a chronic pain condition, and we're on our own now. (We're not, of course. But that's how it feels.)

Relieved, because they obviously think we're on the right track, and we no longer have to do three hour round trips through heavy traffic.
And yes, Ben is making steady progress:
  • our family is going out soon to celebrate that he was at school for at least a couple of hours nearly every day last term, headache and all
  • we were expecting his energy levels to deteriorate by the end of term, but he was actually getting a little better, which suggests this approach is working
  • he recently enjoyed a full day's party with four friends; three months ago he could barely manage two hours with one friend
  • he also did an intense bushwalk; three months ago he could only do 30 minute's flat walk.
On the other hand, Ben only managed two full days last term, and they didn't go brilliantly. We're aiming for two full days a week this term, but we haven't made it yet. Meanwhile, there are lots of school drop-offs and pick-ups and interrupted days. It's never easy to take a child to school when he's in pain.

So it's over to us. Perseverance, daily exercise, perseverance, getting enough sleep, perseverance ... we - or, rather, Ben - have to keep working away at this thing until he is well.

Which he will be. In time. Humanly speaking, and God willing. For most children with this condition, the journey out is as long as the journey in (and that was several years).

If I forget how far we've come, I only have to think back to the bewilderment and desperation of four months ago. These days, I don't burst into tears when I'm in a safe environment and people ask me how I am (though I'm not promising anything). I'm no longer battling high levels of anxiety and panic.

Ben's pain no longer feels like "my issue", something I'm suffering as much as him. This is good for both of us. It means he doesn't bear the burden of my sorrow as well as his own. It means I can see things clearly and support him well. It means he learns, as he must, to manage his health independently.
And what has this all done for Ben? Only God knows. But I've watched him grow in resilience and patience. I've seen his self-awareness and wisdom increase. I've helped him dig deep into the Bible's teaching on suffering, and take from it God's comfort and strength.

He's as tall as me now, thirteen years old, and his voice is as deep as his father's. The outer, visible changes mirror the ones within.


Brad Hansen said...

Hi, Jean! It's always good to get your "dispatches fromt he front." We've seen some hopeful signs in our son, too. One intersting wrinkle is that both his counselor and his psychiatrist came to the conclusion, independently, that he would do better with medication normally associated with ADD (straterra). Kirk has seemed to respond to this and has been making his college classes more. But it always seems like such small steps. "Normal" seems so far away. Fortunately, God is not yet finished -with any of us. Tell Ben he has someone praying for him way over in the U.S. Blessings!

Catherine said...

Oh Jean, you've been through so much! Ben is a brave lad - it will be amazing when you look back on all the fruit from these difficult times - actually there will probably be lots that you will never see, this side of heaven. It's great to see the progress that he's made - good on you for hanging in there. xx