Looking beyond the scars

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There is something almost meditative about giving your severely disabled, fragile child a gentle bed bath. Brendan Bjorn loves water. Even more so, he loves having his hair washed. The feeling of warm water running through his hair never fails to bring a look of enjoyment to his handsome face. Today, as I struggled to give him his bed bath because I’ve been sick all week and my hands were trembling, I went especially slow. But in that slowness, I paid particular attention to all of his scars.

And as I looked at all of his scars, I also looked beyond the scars. 

His most recent scars are the first I saw while washing his hair. These are 2 scars on the right side of his neck from having 2 different central lines placed last Autumn while he was in hospital recovering from a spinal fusion. His intestinal system stopped accepting formula PEG feeds. It was the fourth time this has happened. This time, however, was the longest and hardest to recover from and he ended up on TPN for many weeks while we (his medical team and I) worked to slowly reintroduce his PEG feeds.

Washing the scars on his neck made me reflect upon those exhausting 2 1/2 months in hospital, sleeping on a bench, away from my other son, and at times wondering if Brendan Bjorn would even survive.

The next scar to wash was the longest one he has – that from his spinal fusion. Carefully holding his body in place while I washed and dried his back, that tremendous scar reminds me what a warrior my son truly is to have come through such an arduous operation despite his various complex medical conditions.

And I thanked him once again for teaching me how to stay strong.

Not far from his spine, down either thigh, are scars from 2 derotational osteotomies years ago. As I looked at his legs, now once again betraying what should be, sadness came upon me. This is what causes him pain. This is what limits much of his ability to be in different positions. One femur now pointing too far outward, bone on bone in the hip socket. The other, partially uncovered and increasingly pointing too far midline. Both cause increasing concerns.

He won’t be having any more hip surgery, I’ve decided, unless the pain becomes too great. 

Rolling him over, I see the scars from 3 different pressure sores at his left IT point area just below the left buttox. One is concave because that pressure sore was once a grade 3 sore. There is a dark redness once again on one of the scar areas and I can’t help but wonder, if it’s red again now, what will happen when he finally gets his new wheelchair seat and can once again sit upright?

I can only hold out hope that the skin stays intact. If it doesn’t, we are back to being housebound while he would be bedridden. I can’t let my mind go there for too long.

I also bear a scar for Brendan Bjorn. A scar I will be proud to have as long as I live. The scar from the cesarean section which brought him into this world and into my life. The scar which reminds me of the moment my doctor told me, you have a boy! The scar which also holds bittersweet memories of the first few days and weeks after his birth when they all had no idea of the brain damage just waiting to be uncovered; waiting to be seen like the scars he now has all over his frail teenage body.

These scars are a roadmap of our journey together so far. And as I reflect on this often challenging, but always love-filled journey, the scars take on a deeper meaning to me.

 

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