A Good Place

I got the call last night from a nursing friend of mine, that a woman at the Respite House had lost her disabled daughter. The daughter, now forty, died after the family put a DNR in place, refusing to vent her for a second time, after a serious bout with pneumonia. The daughter had been hospitalized since Thanksgiving. She told me of the agonizing decision this woman had to make, and how she wanted her entire family with her for support, because she didn’t feel like she could make the “right decision.” She kept saying that “she just wanted to be a mother”; she didn’t want to have to make this choice. I don’t know the woman personally, but only know of her, since she ran the Respite House prior to Dear Son staying there last year. I couldn’t help but feel great sadness for the woman, almost as if losing my own Dear Son, since I know full well, what the mother had been through.

The problem with severely disabled kids, is that you love them too much. You love them first for their beauty, next you love them because you are compassionate and the hand they were dealt doesn’t seem fair, and then you slowly begin to put yourself in their shoes. Once you do that, it’s all over because you will forever put yourself in their shoes in every situation. As a mother, you then try to make their life easier and pretty soon, you are joined at the hip. You know they can’t get through their day without you and you can’t get through your day without helping them. You essentially, put all of your eggs in one basket. You know that’s not smart, but you do it because as a mother, you can’t do it any other way.

With Dear Son, I see him struggle every day. I help him through all of his daily tasks, from rolling over at night, changing his diapers, giving him his meds four times a day to pushing the button every two minutes on our little Christmas House so he can hear the music. It’s one of the few things he enjoys so I can’t help but do it. I work part time so I can care for him, thus giving up a full time corporate job, all the money and the lifestyle that comes with it. But that is my choice.

You never mind though, because you know they are taken care of. You see what happens when they miss their medicine, so you make certain it doesn’t happen. Your biggest fear is what will happen when you die. Who will take care of them? How will they survive? Heck, you can’t find daycare when you are living how can you expect to find a place to care for them when you are not around?

And then, at some point, some of them die. You lose the one person you love the most. The up side is that you don’t have to worry about dying before them. The down side is that you can’t live without them. And therein lies the story. You never win. You never win with a disabled child because the up side and the down sides are the same. There is no up and there is no down side. It’s all just a continuum and at any given time you are at one spot or another. And that’s what makes it so hard. You spend your whole life trying to get to a good place. You want them to talk, you want them to walk. Those days don’t always come like you imagine. You want to wake up one day and have them walk. Instead, maybe they can stand in a walker one day. And then, a few months later, they can take two steps. And then, months go by and they can walk in the walker. At some point, maybe they can walk holding your hand for support. What was the day that they could walk? It all gets kind of muddied.

Then, as time goes on, they can’t walk anymore. First, they might be recovering from a hospital visit and they are weak. Then weeks turn into months and pretty soon, they diagnose them as having a progressive disease. Then there are the hospitalizations, the pneumonias, the ventilators and then the DNRs. Every time you turn around, you are trying to get to a “good place.”

I was thinking the other day, about Nancy Reagan and how difficult it must have been to watch her husband fade away. I thought about my own Dear Son and how different is it now, when I look at his pictures from a few years back and see all of the excitement, the emotion and how he could walk on his knees. That seems like a good place. I thought about now, how he can’t even stand up for a second so I can put him into the car or how he needs me to help him roll over at night. Maybe Dear Son having a progressive illness is God’s way to make it easier for me. If he takes Dear Son now, maybe I’ll flip out from loving him too much whereas if he takes him away slowly, I’ll know when the time comes, that he is where he should be, that he’s in a “good place.” Somehow, I doubt though, that it will feel very good. It’s like spending your whole life flying in a snowstorm and having to land the plane. Your choices are to land in a vast forest, a ravine or a swamp filled with quicksand. In the end, you are still looking for a good place. And maybe that’s why she said she “just wants to be a mother”; she’s tired of flying the plane and just needs a good place to land. In the end, the plane lands and you have a gaping whole in your heart, where you loved too much.