For the Love of Dear Son…

I saw Dear Son sitting in the wheelchair. The school bus had just arrived at our house and the bus driver and his new aide were searching for my number in their cell phones. Normally, I am always there when Dear Son gets home from school, but today, the bus had arrived a half hour early and I was just pulling up behind it. The aide saw me and turned Dear Son’s wheelchair in my direction and I saw his face. He had a startled look on it, his eyes searching desperately for me, but he couldn’t locate his Mom. He kept looking around for me, not recognizing my car which was only twenty five feet away, behind the school bus. The bus driver caught a glimpse of me however it took a minute for him to raise the ramp with his remote control and then a few minutes or so before he could pull the bus forward enough so I could pull up into the driveway. Dear Son was still looking frantically around, his face startled as if to say, “Where is my Mom? Where is my Mom?” My heart broke as I saw his face. If it were a movie, they would replay the words over and over again, as I did in my head, imagining what was going on in Dear Son’s mind. I called out to him as I passed the wheelchair and told him I’d be right with him in a minute, as soon as I parked the car.

Dear Son processes things he hears better than things he sees, especially when he’s nervous. As soon as I saw him, I kissed him and put my hand on his shoulder and told him it was going to be fine. I said that I would never leave him alone and that I would be there when he gets off the school bus. I don’t think he felt very comforted as we walked into the house. I pushed the wheelchair in the living room, turned on the t.v. for him and told him I needed to get the groceries out of the car. After they were put away, I kneeled down and talked to him in the wheelchair. I looked him in the eye and told him that I was not going to leave him anywhere. I kissed him some more on the head and he leaned over and licked my hand. That’s his way of giving a kiss as he has little oral motor control. It’s also his way of thanking me for explaining it to him.

I have had this conversation with him many times before, especially when he’s in the hospital. I tell him that “where he goes, I go.” That’s our policy. If you get Dear Son, you get his mother. He likes it when I tell him that. I am like his protector, and more importantly the voice he doesn’t have.

The words felt different though since I knew that in twenty four hours, I’d be dropping him off at a facility that will care for him for the next two weeks, while I recover from back surgery. It’s been many years since I have trusted anyone to care for him for a twenty four hour period. My rule of thumb is that I will use a Respite sitter only during the daytime, after breakfast and before dinner is the window I use since I don’t like anyone else giving his meds. Too many mistakes. When I have a sitter, I prepare his lunch time meds in advance so there are no errors. He only has one medication at lunch, as opposed to the other times of the day where he has more. He’s on six seizure meds and two GI meds and the timing for him is important. Some have a half life and he has a Vagus Nerve Stimulator but the reality is that if you are too late with the meds, he can run into trouble. I am pretty punctual about his meds and never go over a one hour window. I give them four times a day but due to a recent change, I now give them five times a day. That’s a lot for someone else to administer, even medical professionals, and a lot of room for errors.

I talked to Dear Son several times over the last two weeks, talking about my surgery. I try to keep it fairly simple. I told him that I need to have some surgery on my back and have to go in the hospital so I have to have someone else take care of him for a while until I can lift him again. I tell him that he has to help me and then once it’s better he can come back home again. I tell him I need the surgery so I can keep taking care of him.

Deep down, it’s been difficult. I’ve have back issues since the third grade and I’ve needed surgery for many years to fix my issues. I also have three large disc herniations in addition to my existing issues. For the first time, my back issues were so bad, that I wondered how I can continue to lift him. I have been in severe pain for four months now. In the beginning, it felt like a bomb blew up in my back and I just wanted to scream at the top of my lungs the entire day. It improved somewhat after the anti-imflammatory medication but it’s been worse the last ten days since they had me discontinue it prior to the surgery. I do have a Hoyer lift but still, there are a lot of times when a Hoyer lift just won’t do the trick and you have to use your muscles. I worry about the “what ifs” and if I am going to be able to take care of him when this is over. The good news is that it’s minimally invasive with no hospital stay but I don’t know what that means in terms of really being able to lift him. I have him there two weeks.

I decided a long time ago that I would always take care of him and that I would do whatever it took to do that. Along the way, people will ask me about putting him in a home and in the last few years, I have said I “may” think about that when he’s an adult, but that’s as far as I will go. I believe that kids should live at home. I wouldn’t want to have to live somewhere else and I don’t want that for my Dear Son. When your child has mental and physical disabilities, they need you “more” not less. You are their protector. Mistakes happen and that’s why you need to care for them. I’ve done numerous hospitalizations with him over the years and I’ve seen many medication errors or medication that is late, etc. I know that being there is the best thing you can do for your child.

So tonight, I’ll have to take a leap of faith. I’ll drop Dear Son off after his dinner and I’ll have to let someone else give him his midnight meds, morning meds, get him off to school and essentially take care of him until I am able to get there to see him. He’s only three blocks from my house, but I am not supposed to drive for ten days. I plan on breaking that rule as soon as I am able since I can’t go without seeing him for more than a day.

I think about him often, especially when he’s at his Dad’s for the weekend. I love being able to sleep but the house is really empty when he’s not here. When he comes home, we have this little ritual. That night, when he comes home, as I tuck him into bed, I tell him that I hope he had a good time at his Dad’s but that I am really glad he is home. I tell him that it’s not the same without him here and that I can’t sleep very well because it’s true. He smiles when I tell him that and he’ll lick (kiss) my hand. So tonight, I’ll drop him off and tomorrow I’ll have the surgery. But I doubt I’ll sleep very well, until I see him and reassure him that he’ll be coming home soon.

In the meantime, I have some pretty nice nurses who will care for him. I think he’ll love the place, it sits on three acres and has a nice big rocking chair for him, along with a wheelchair swing for him to swing on (It’s a ramp that you roll the wheelchair on and then you lock the wheelchair and the ramp swings back and forth.). I think he’ll love the other kids too and there will be a lot of activity and a lot to do. I’ll miss him a lot. It’s a gift to be able to take care of your children and a gift to have someone to take care of. So today after school, I’ll sit him down and tell him again, how much I love him and that I need him to help me until I can come over to see him. I’ll kiss him goodbye tonight knowing he’ll be comforting himself with his Bedtime Barney as he goes to sleep. In the meantime, I’ll say a prayer or two, and thank my lucky stars that I have people who will take good care of him until I am on my feet.

Note: Dear Son's Dad and I dropped him off last night at the Respite House and it went well. Both the nurse and the Director of Nursing, whom I know fairly well, stayed late so they could admit Dear Son and so that it would go well for me. They had a nice big rocking chair in his room which he was thrilled about! He started laughing and wanted to go in it right away! He rocked while they admitted him and I signed the papers. I brought in a notebook of his morning, afternoon and evening routines to make it easier for them and I sent all of his food and changing supplies to school in advance so I don't have to worry that he won't have his food to eat. All in all, a nice drop off. Dear Son wouldn't give me a kiss before I left though! He was happily nuzzling his Bedtime Barney and laughing when I left so I felt good.

This morning, I go in for back surgery. It may be a few days before I can post again.