I have four whole hours of respite today! Hope has had a tough week and I am sooooo ready. I made it all week with my Therapeutic panties, but I am so happy that for four hours today I WON”T NEED THEM! I don’t know exactly what I will do with my break, but I’m sure I can think of something 😉
Yesterday was therapy. The therapist said Hope was accomplishing a lot in therapy, but was unable to tolerate therapy for more than a short time. On the way home, Hope raged until she fell asleep. I said nothing to her, because anything I say makes it worse. Instead, I concentrated on driving and imagined the earth opening up and swallowing the Texas parents. Not Christian, not productive, not even particularly fair. It got me home. Sometimes I don’t like myself when I am dealing with Hope.
Long morning. The kitchen was a wreck. The kids wanted to face paint. I let them while I was cleaning. Hope looks great! GB is covered from the top of her head to her shoulders in 1/4 inch thick green face paint. I know what I am going to be doing for the next couple of hours. And it won’t be finishing the kitchen 😦
Goals are illusive things, especially when talking about a special needs child. They change over time. They change as you grow and redefine what is important. They change as your child’s abilities and deficits become more apparent.
I read an interesting post over at Fighting Monsters with Rubber Swords this past weekend. The author talks about his assumption that the best goal for his daughter would be to succeed in the NT world. His daughter is now eleven and it occurred to him that maybe he was setting her up for failure.
With my oldest two, from the beginning, my mindset was they could do anything they put their minds to. I assumed they would graduate with a regular diploma. I assumed they would compete in the NT world. Both J and MK did. They earned regular high school diplomas and went out to tackle the working world. It was a success as far as them meeting my goals. Ultimately, though, for J and MK as people, the cost may have been too high. J doesn’t remember the thrill of succeeding- he remembers the years of being the stupid kid, the feeling of not being able to connect with NT kids. MK needs support, but is not eligible for services because I insisted she compete with everyone else and succeed. They came so close, but maybe I, like Schuyler’s Dad fears, just set them up for failure. It never even crossed my mind at the time.
When we first started on our journey with GB, my goal was for her to attend kindergarten in our neighborhood school. She did that. As far as the world was concerned, it was a rousing success. From GB’s viewpoint, not so much. She remembers being very unhappy and dreading school. In the last two years, I have done a lot of reevaluating. Part of it was looking at my oldest two and what they need to succeed and be happy. Part of it was getting accurate information on what GB’s deficits are and what she can realistically can handle. Most of it is realizing that God has a purpose for GB and my job is to help her fulfill God’s purpose for her life, not mine.
When I look back on how I made decisions for my children, with the best of intentions, I cringe at my arrogance. What was done, was done. However, I still have the opportunity to support GB in fulfilling God’s plan for her and will do my best. She is not NT and never will be.
I don’t have to continue making the same mistakes.
It has now been a week since my Reiki treatment. The first few nights after the treatment, my legs weren’t jumping and I slept well. They are back to jumping again. I saw no difference in the trembling, my balance, or my strength. It was only one one-hour treatment, so I really wasn’t expecting much. Considering I had three good nights in a row after it, which almost never happens, I am inclined to believe it did something. I am going to commit to it for three weeks and reevaluate its effect.
We are leaving for NY in an hour. Please keep all of us in your prayers.
We have been away from home for much too long. It isn’t by choice. While we were in the North Carolina mountains, my parents house sold. Bittersweet news. Good that the house sold. Good that it is time to move on. However, time is dragging me along, even though I don’t feel ready.
We were suppose to be on our way yesterday. We weren’t. The Dad bought MK a plane ticket home. She is afraid of flying. She spent the night telling me how horrible I am. It got old quick. I lost count of the number of times Hope raged. When she wasn’t raging she was poking. Chinese water torture. GB did OK- until bedtime. It took her over an hour to cry herself to sleep. Nothing I said or did made a difference.
Today is a new day. We still aren’t going home. Maybe the day will be better anyway.