Today was the girls’ first day back to school after winter break. GB started her new class in her new school. They take different buses, but leave and arrive within a couple of minutes of each other. After they were safely on the bus, I began to worry- serious worry that consumed my mind and left no room for everything else.
It is hard to send any child into a new school situation in the middle of the year. It is even harder when that child has disabilities that make communication difficult for them. My primary goal is that she feel competent at school and finds joy on occasion. I still want her to learn as much as she is capable of learning. I do not want to put limits on the future of a child who hasn’t turned 10 yet.
GB came home with a smile, one page of homework, and lots of things to share. Day 1 went well. Hope came of the bus whining and complaining and pure attitude. She struggled through homework and when it was bath time, she lost it. She didn’t come back. The bottom line on Hope is that she still is not safe. Her psychiatrist is suppose to come back this month.The medication she is on does not cut it. We meet with her new therapist Friday. I am hoping she will lead us in a new direction.
My moment of the day: laying in bed with GB, working on a word search puzzle. She is a very visual kid and is good at them. We enjoy them together and it doesn’t hurt her vocabulary or spelling skills.
Wednesday and Fridays are my days to sit with Kenny while he has dialysis. On Wednesday, I put GB on the bus and drove the 20 minutes to the hospital. Kenny was awake but in pain. I asked him how bad. The pain was a 9. I went to get the nurse and she gave him Oxycontin by mouth and dilaudid through his PIC. He wouldn’t eat or drink. He asked if I was staying for the whole treatment today. I was. They came to wheel his bed to dialysis, one floor up. Hooking him up was uneventful. I sat next to him, watching. He was cold. I found an extra blanket. He was still cold. I found another one. Five blankets later, he was comfortable. An hour into the treatment the pain hit. They gave him Morphine. The pain got worse. They gave him more dilaudid. It didn’t help. Kenny asked to stop the dialysis. That got the nurses attention. They paged his doctor, who ordered more Morphine. It did not help. Kenny told me he was done. He couldn’t do this any more. I thought he meant done for the day and went to have the nurse unhook him. He stopped me. He said he was done. He was tired and couldn’t fight any more. He asked me if it was Ok. I said yes and asked him what he wanted me to do. He wanted his people so he could say good bye. I called his brother and told him what Kenny had said. His family came to the hospital. I kissed Kenny and told him I loved him. He asked where I was going. I said you have everybody here, I am going home. He said, “That would not be good”. I asked if he wanted me to stay. He did. I recounted the morning for his family. His brother tried to talk him out of it. Kenny kept repeating he was done. I repeated what happened to anyone who asked.
Back in his room, I sat on the arm of the chair. I played with his hair and drew curlicues on his arm. People came and went. I made sure they didn’t touch anything but his head and arms. Everything else hurt him. The doctor put him on a constant IV drip of Morphine. It took awhile to find the dose that got rid of the pain, but the nurses kept with it. Kenny had been in the hospital since Thanksgiving. The nurses struggled with his dying as if they were family.
Kenny died at 1:40 this morning.
Kenny Bryant 1962-2012
“I have fought the good fight, I have finished the race. I have kept the faith.”
Raising any child involves the process of letting go. With a special needs child that process becomes a lot trickier. We are considering sleep away camp for GB. Since the Cons are easier, I will start with them.
GB has never slept anywhere without me except a few single nights at my sisters.
Hope would be home and she wouldn’t.
It is expensive- $10,000 for six weeks, $2200 for the one week I would agree to.
A lot of new experiences, packed into one week. (Not GB’s strong point)
Would have to trust someone else with GB’s medication. (Not my strong point)
She is only eight!
Now for the harder to articulate Pros
It is a special needs camp, with a counselor to camper ratio that varies from 1:3 to 1:1
It is only 25 miles away.
GB is social- she loves friends!
It would give her a chance to stretch her wings and see how capable she really is.
The camp offers her kind of activities- swimming, campfires, horseback riding, arts and crafts, singing and dancing, drum playing and putting on plays.
Her disabilities would be approximately in the middle.
I have to start letting go sometime.
GB and I are hoping to go visit the camp this weekend, weather permitting. She will get to see the campus and the director will get to see her. After that I can speak with him again about how good a fit this camp would be for her.