I am taking my son home today. I am taking him away from the wires, the needle pricks, and the constant pain he lives in. I am taking him home to the place he lived in and was loved in. Where Kara and I told our families we were expecting on Easter Day last year. I stood in front of the fireplace and told them, we gave each one a framed picture of his sonogram with a verse from Jeremiah printed on it "Before you were formed in the womb I knew you, before you were born I set you apart." And so it was.
Where James learned to crawl across the kitchen, always aiming for the dog bowls, eager to give their food a try. The entryway where his pack and play displaced completely our console table, becoming a new, more fashionable piece of furniture. The walls he tossed sweet potatoes onto while he still struggled with whether or not he liked solid foods. The chair in the corner I spent hours rocking him in, positioned just so you had good angle at the remote. I only ever used my fingers to change the channel- use the whole arm and James wakes up.
I am taking him home to his room, with its stencil/stickers ordered from Etsy, which apparently means Malaysia. It took us a good hour to figure out the directions. The T-shirt knit rug Kara and I bought at Buy Buy Baby, neutral so we could use it in his brothers and sisters rooms too. The rocker, also cream. We doubled up on coupons for that. The crib James sleeps in upside down, so he's never under the mobile- though that's the part of the crib where his piano sits, mounted on the side. He loves his piano. He always wanted to be moving, and before he could crawl he could flail, and he cackled when his feet made contact. The little boy's rocking chair that belonged to me and to my father before James, a frequent photo shoot accessory.
Home to thousands of memories, even in the short eight months he's called it that. James colonized the place within a week, and now it belongs more completely to him than it ever did Kara and I. His toys, his dogs- a constant source of play fighting entertainment, even his table, where he lords over us in his high chair. We call him Master Jamesie, for he is master of all that he surveys.
Above all I am taking him home to be with the people who love him. Kara and I have often asked how we could have been so lucky to call him our son. I have often felt he was more of a gift than I deserved. This is our chance to show him precisely how much we love him, to envelop him completely in that love and to repay the gift of his easy smile to us for so many months to him.
If I thought any chance whatsoever existed for my son, I would ask him to fight. He is a brave boy, and he has endured all that he was asked to bear with no complaint and a sublimity that defies reason and speaks to God's grace in him. If we asked him to, I believe he would fight. He would struggle, do battle against his tumor and all that was requested of him. But I will not put him through that struggle simply to watch him strive valiantly and ultimately to have us, medicine, and his body fail him. To watch him whither away in pain before he is taken from us. In the words of our neuro-oncologist today, this cannot be cured. Her voice is not alone. Tumors like James' do not have survivors, only sufferers. I do not want my boy to suffer more. I want him to know the perfect love that surrounds him.
And so I am taking him home to know that. As our oncologist speculates, the time left to James is measured in days and weeks, not months. We have come this far, and James has carried us. We will have to carry him the rest of the way.
Please respect our decision and support us. We are entering a new phase of our journey, and we will need still more support. Pray for us and James in the weeks to come, that we find peace, and do not know pain.