((((((HUGS)))))) To ALL
Sometimes looking at old photos and watching home movies is painful, because they remind me of what once was and is no more. While I'm grateful for what we had, I grieve for what we've lost.
Jon walked. With an awkward gait and knocked knees, he could still haul buns. Then came the walker, then the wheelchair. He scooted on the floor at home to get around. In bed, he used to be able to bend his knees and pull them up to his chin.
Now, he's in bed, his legs are contracted, and his hips are crumbling, along with the rest of his bones.
I often gave him "chores" around the house, like helping me fold laundry or standing beside me in the kitchen, snapping green beans. Michael stirred cold sauces and cake batter.
We went so many places together ~ concerts, picnics, visiting family and friends, fairs, amusement parks, traveling on short vacations.
I can't remember the last year we took Jon out in the van. Perhaps it was 2007. He wants to do that desperately and periodically mentions "van" and "map" to us.
From the moment Jon was born, he had a huge appetite. Food and juice are his most favorite things in the world. He and Michael loved lasagna and pancakes. They both fed themselves for many years (Jon longer than Michael), and eventually, we turned to pureeing their meals.
Then came the Gtubes, and oral feeding stopped. I'm grateful for the feeding tubes, and I know that they benefited both of my boys by preventing malnutrition. But, those tubes carried a sadness too, as it was their last normal thing. Eating. Enjoying the taste and texture of food.
Of course, they both accepted their Gtubes, as they did with every other change in their lives. I feel certain that they understand the reasons for the tubes, and why they couldn't eat orally any longer, because of aspiration. Yes, I honestly believe that my boys understand that. Eating made them sick ~ that's the essence of it.
After Jon's bath the other evening, as Jim was connecting Jon's Gtube to the feeding pump line, Jon looked up at Jim and blurted out, "Hamburger!"
Jim looked at me, and we both welled with tears. Jon repeated it, strongly, "Hamburger!"
Jim began explaining to Jon why he can't eat food orally, and how badly we feel about it.
Jon shouted, "Pizza!"
By now, I was shredded. We'd been watching home movies all day, and Jon was remembering what he'd lost.
Jim continued to explain to Jon what Jon already knew, and I wrapped my arms around Jon and held him close to me.
Yesterday, while I was flushing Jon's Gtube, Jon gazed at me sweetly. "Mommy, I love you."
Before I could answer "I love you too," Jon said, "Hamburger."
After I scooped my broken heart up off of the floor, I launched into the explanation of why he can't have hamburgers again, as I hugged him.
As always, he accepted his plight.
And I strive to follow his lead.
Love & Light,