I have held on to my children like the treasures they are, reluctant to give them up to be molded by strangers. But, especially John John. Hope was easy, I wanted a life for just her outside of cancer land. She was smart, and such a sweet spirit. I knew she could spread her wings and fly. And, she did. She ended up with A honor roll for her first grade year.
John John is another story. First off, Hope’s former school could not accommodate an Independent Education Plan (IEP) for John. This is significant. I won’t get into the technicalities of that. Many of you out there already know what that is all about.
John John going to school is hard for me, because I have always been the eyes and ears on the ground for symptoms of his cancer returning. Even though the last 8 months, the scans have been stable….I was always the one to watch every movement of every limb. I knew when it was time for more physical therapy. I knew when he needed adjustments in his schedule. I know how to handle his meltdowns. I know what frontal lobe brain
Damage means. I know what a PSI is. (perception scale index). I know he has prefrontal cortex damage. I am the keeper of John John. I know his weight 16.9 kg 37% on the growth curve. I know every drug they use for a mri. Pentabarbatol, versed, phentynal, glyco if he cries, ketamine if his frontal lobe damage causes problems when putting in the iv, which causes secretions that they have to suction and he has to be scanned on his side.
I know, all technical boring nonsense to most of you out there. But, I know for a fact you know what losing control feels like. We skipped kindergarten not knowing what his cancer was going to do. We never expected to have to face the prospect of school, at least i did not. I was not prepared for the internal struggle of letting go. It is a place I don’t know how to function in. Can’t I just sit through every day and not watch him, making sure he is happy and ok? I wish. I have been asked to sit through the last hour of every day for a month. I find myself a distraction, but I can monitor his work load and make adjustments to where he might need more help. It is so complicated. And, I could write about that. But, what I really want to talk about is the letting go.
I have had hours and hours of meetings with teachers and dean’s of education about my son. They are a gracious bunch ready to meet his every need. I can not say my faithless prayers went to the wrong place this summer. I prayed hard, not knowing how God would find a way to put my son in this private school where i knew he would be loved.
I find comfort in that. He is loved. I watched yesterday as a child became teary (not my son) and the teacher sat him on her lap and read the kids a chapter out of Junie B. Jones. The boy stopped crying. I almost burst into tears. I knew my son would be safe there. The compassion available in that classroom has brought me to tears.
In the morning, after I drop the kids off, I wander the house. I look at what their lives are composed of. Cancer has been pushed to the back burner for now. I find some relief in that. I think about, if my son lives a full life, what is out there for him.
I already told him, when he is ready to drive, i will buy him a car that doesn’t use foot pedals. His right leg is braced and he couldnt drive a car unless it was modified. That maybe he can be a fireman, but he could also be a fire inspector.
To think ahead in my mind is both winsome and dangerous. I want to let my mind go and let him dream. I don’t want him to know I think about limitations, but I see them clearly. I will never take his drive away through words or actions. He is a beautifully made human being, made to have passion and dreams……
Now, what shall I do with myself? I can’t answer that question right now. I am still in the worry phase. When I enter the wondering phase, maybe ill bounce off of you. So, I have successfully talked about everything but letting go. I know that. But, it will happen in steps. I know this. I must grieve the loss of control first. The physical loss of control. I have educated the teacher, dean, and nurse on all that they need to know.
One thing I keep telling myself is God turned 3-9 months into 2 years and 3 months thus far.
And, this is his first week. The teacher recognized that he did the best he was capable of.
Enough of my rambling, Faith