When Life Changes Bite

This last month has been really, really hard. First, somebody tried to make a right turn from the left turn lane and took part of the front of my car with her. I hadn’t had any other car accidents in over 20 years, but about 3 weeks later, I totalled my car. It doesn’t take much to total a 10-year old car, and my back doesn’t take much to flare up nastily. It flared with the first accident and has remained nasty ever since. My car was not replaced before my mother totalled her car. Before that was over, my younger son and I reached a decision to place him in an ALF–assisted living facility. We had to move fast to find a car for me, find a car for my mother, and find a place for my son that was appropriate for a young man 26 years old. Geriatrics aren’t a good fit for youth in ALFs. But there seems to be only one in our area–and this is Miami, FL, not a small place.

Crush, rush, tension, pressure, worry, and overwhelming sadness that my son’s life had come to this point. Hit by a car in July when his walking had already deteriorated to where he should have been using a walker, he has not recovered his previous walking ability, and the constant head-shaking is worse than ever. Now his hands have begun to shake, too. Neurologists don’t know what his diagnosis might be nor what his prognosis might be. All I know is that it keeps getting worse, not better. And now the sweet young man who was once thought gifted in first grade is unable to read regular print, has difficulty with memory, can hardly walk or keep his balance, and has ulcer symptoms due to life’s stress. It’s impossible for me to care for him and do a job, and it has come to this.

Institutionalization has its place, but it is not a joyous decision. This decision came amid extreme pressures, but it would hardly have been easier without those factors. Sometimes we just have to do something we don’t like and live with it. My son can’t like being the one “placed” there…and that gives me perspective on how petty my feelings about it seem in contrast. It would be easy for both of us to be depressed, yet we don’t seem to be. We are both looking at how to find the good in it. He gets to make new friends, discover a new neighborhood, find new foods he likes to eat, and learn new games to play with residents. I still get to drive a lot, but it knocked 10 minutes of the trip each way–YAY! And the best part–he lived alone and couldn’t take care of himself before–and now he has company and help.

Nobody knows what their future brings, but we do know one thing. Happiness is a choice. We can choose to find the good in our lives and be prepared to look for it pretty hard, making sure we haven’t overlooked something somewhere. There’s no value in picking at a sore so it doesn’t heal, and there’s no value in feeling sorry for oneself. So we’re picking ourselves up, dusting ourselves off (ah-choo!) and looking for where the sunshine goes. Healthy minds help make healthy bodies, and help sick bodies get well or at least not get worse. It becomes our daily routine to find joy, find delight, find happiness. We never fail to find something.

That is the challenge to parents of children with disabilities. Life deals us a few kicks in the teeth, and boot on the butt, a whack in the head. We have to keep standing and keep things moving to care for our families. There are days (weeks, months, years!) when it may seem like we can’t do it, yet there always comes tomorrow and we are still here. Even if we gave up on ourselves, we are still here. If we are still here, we can try again. We have courage, strength, and determination if we start again (once or often, it’s all the same. Just start again. Never stay “down”!)  If others are watching us, we may be inspiration for them.  No matter what happens, we are still here.

It is one of the great secrets of life that even those who gave up are still here. It’s up to us to develop the internal fortitude and grit to say, “So it’s time to begin again. Or continue. Only don’t stay like this!”

To all you parents whose challenges are so fierce that you feel like giving up but find yourselves still in the battle every day, no matter what, you have my undying respect and best wishes. We’re always fighting for something–it’s never calmly boring, this living with disabilities. Even that is a blessing!

There. I’ve started it. Recovery from life’s bites and blows begins with a first step toward re-discovering one’s happiness. It’s your turn. Where is your happiness and what delights can you gather to make this day better than it was?

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