April 1, 2017

Many people have been asking how I am doing with Heston's new g-tube. I have to admit that the few days leading up to the surgery were difficult for me. I had known for some time that it was the plan, and I felt confident that we were making the right decision to go ahead with the procedure, and yet I felt sad. It was as if we have a certain number of boxes, representing stages that Heston has left in his life, and we were checking off a big one. Normally I love checking things off lists, especially "to do" lists. But not this time. This was a deliberate reminder that we were one step closer to losing him.
Heston's surgery went smoothly, without any complications and his recovery has been amazing. At first the whole process of feeding him with the g-tube was overwhelming. There seemed to be so many steps and I was frustrated to add yet another tedious, time consuming role to my care of him. But now that I have it figured out, and the steps are becoming automatic, I am finding it the exact opposite. I didn't realize how much time I was spending cutting up his specific food, cleaning up the mess he would create, and even the stress I felt, always listening to make sure he wasn't choking, being always on the ready for when he did.
I am finding this new stage in Heston's
care actually easier instead of harder, which I am trying desperately to enjoy and not feel guilty about. It is a funny thing trying to balance emotions of relief and guilt and I have yet to get it right.
All seemed to be going smoothly this past week and then we went to Costco for our usual groceries last night. I was astonished at how many things that we would usually buy were specifically for Heston , and were no longer needed. I would go to grab something for the cart only to realize we didn't need to buy it anymore. I felt lost in the store, with no idea what I should and shouldn't buy. It was such a surreal experience as I pushed my sweet boy in his wheelchair, and yet mourned as if he was gone. I wanted to start bawling right there in the store, to grieve that another part of him had died. It made me scared. Scared about how lost I will feel when he is gone.
And so, here I am, walking the line of "don't have to" and "don't need to" and I find myself struggling in the process as I work through the relief and the guilt. But there is no time to dwell on it. This week we will be incorporating this new feeding process for Heston at school and I have decisions to make and plans to implement. Another day in the role of manager of the mini corporation called "Heston". Oh how I love him.

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