There’s No Place Like Home

I was sitting in Dear Son’s hospital room as he lie sleeping in bed. It was approximately 11:20 a.m. and I was just getting ready to go down to the restaurant, which was located on the second floor of the adult hospital, to get a salad, when I heard the little boy go by. The little boy appeared to be about eight years old, was black, with a cute face and big brown eyes. He was sitting fully dressed on one of the hospital beds and was being wheeled down the hall by two uniformed men. His plastic bag, with the children’s hospital name on it, was at the end of the bed and contained all of his belongings. “You need to call my Momma,” he said. “Please, just call my Momma and she will come and get me.” “Where are you taking me?” “I want to go home.” His eyes were filling with tears and he could sense something was terribly wrong, but his Momma would fix it if they would just call her. His cries became more urgent and quicker and the two men pulled the bed down the hallway even faster, so as not to disturb the other patients, or children as they were, in the hospital rooms. “Please, just call my Momma!" he cried, “She will come and get me.” The little boy pleaded and pleaded with the men but they refused to look at him and said nothing.

It was quite disturbing to witness and I couldn’t get him off of my mind. A minute later, one of the sitters came in to relieve me, so I could go down to get my lunch. She sat with Dear Son on many hospitalizations, as was required, for the 24 hour video EEG monitoring, when I needed to get something to eat or to run home to do a load of laundry. I asked her what she knew about the little boy that just went by.

She told me his mother had signed papers this morning and he was being taken to a group home of some kind. I don’t remember her exact words because I was so shocked by the situation. It appears that he was mildly disabled and his mother couldn’t care for him. Apparently, there were both physical and mental disabilities, neither of which were apparent to me, as they wheeled him by. He was definitely not going home today, or tomorrow, or ever. Then she said something, that I will never forget. She said, “his mother didn’t tell him”. As hard as I could, I could not forgive her for this. I would like to believe that he was going to a better place but somehow, when your mother doesn’t want you and she breaks your heart, I don’t think that any place will ever do, no matter how nice it is. And not telling him, well it just doesn’t get any worse than that. I knew deep down, that this boy would re-play this scene over and over again in his mind, for the rest of his life, wondering, what he could have possibly done wrong, for his Momma to give him away.

So it happened again yesterday, at the grocery store. I was shopping with Dear Son as I occasionally do, pushing his wheelchair with my left hand and pulling the shopping cart with my right hand. When I was checking out, the cashier, who has seen me before, asks me again, “What are you going to do with him when he gets older?” It’s a question that is asked often when I am out in public and more frequently when they view me lifting him in/our of the car and into the wheelchair. They notice that not only can’t he walk, but that he can’t help me at all.

I am never quite sure what the quick answer to the question should be. In fact, I am not even sure I know the answer to the question. The fact is, I don’t know how I will manage him as he gets bigger but I do want to care for him for the rest of his life. I also pray a lot at night. I pray for the mental strength to handle whatever comes my way and the physical strength to lift him. I pray for a lot of other things but those two are usually at the top of my list.

I also know that these are well meaning people that are more curious than critical. If I were speaking with them one on one, I would ask them if they could give up their child. Most people could not do that. But it’s ironic how often we ask mother’s or parents of disabled children, this very question. It’s ironic how often the first thing to come into people’s minds, is to give these children away, or put them somewhere, as if they are disposable. They are not disposable because they have handicaps. They are not disposable because their parents are poor. They should not be given up because it’s hard. But the reality is that it is very hard to care for them. And exhausting.

What we should do, is work on making things easier for disabled children and the people who care for them. This benefits everyone. Here’s what we can do:

• We need to have daycare facilities that take all children, regardless of their disabilities. While legally, they can not discriminate, they often won’t take them. They don’t make money on kids like that, even if they had employees trained to care for them. Daycare for disabled children, is practically non-existant. We need to do this so these parents can work and take good care of their children and themselves.
• We need more Respite care so when their parents are tired, they get a break.
• We need to require hospitals or medical centers that have specialty physicians who care for these children, have suitable rest rooms so we can change them on a bed instead of on the bathroom floors.
• We need to have assistants located in the parking lots of our medical centers, so they can help us lift the children in/out of the car, making it easier, instead of paying people to say hello to us when we come for an outpatient visit.
• We need to allow parents to save tax free in a 401(k) for their disabled children’s retirement, in addition to their own retirement, so the children/adults will be less dependent on Medicaid, Medicare and other government programs. We also need to provide for medical withdrawals, based on need, for these 401(k) plans, in case of catastrophic medical bills. We could do this very easily, by using our current Social Security definitions of a disability, as a requirement for the new 401(k).

There are lots of other things that we can do, but if we start with these, then maybe, just maybe, the kids can go home, and sleep in their own beds tonight.