Saturday, April 30, 2011

on prom (or 'not winning')

Well, today is the day. "The" day, if you are a junior or senior in our town. Today is Prom. Our 16 year old has been prepping and stressing and planning and worrying about this day for a few months now. Things were much simpler if you attended Prom in the 80s...buy a poofy dress, get some dyed shoes, make your hair really big, put your wrist corsage on...and go! Now, there are designer dresses, alterations, a hair stylist, flip-flops on your feet, and wires that wrap around your arm and hold flowers. Quite a different experience.

As we have spent all this time preparing for Prom, it has been a challenge working around Mas for the festivities. Here are some of the mantras repeated the past week: "Keep Mas away from the dress", "Keep Mas out of the shoes", "What are we going to do with Mas while we're taking pictures?", "What are we going to do with Mas while we are at Grand March?", "What if he drools on someone's dress?" And the list goes on...and on, and on, and on....

It's funny that while we are doing what any "normal" red-blooded American family would do during Prom week, we are also saddled with immense work and worry over a young man who never asked to be a part of Prom. He just wants things to be like normal. Or, should I say, "normal". As his school break also happens to be this past week, things have been amped up and running at 100 mph for quite some time now.

I have to admit, while I don't think a little drool or a little noise at Grand March are anything to freak out about, I DO wonder what it would be like to, say, clean the house and have it stay clean for more than 20 minutes. Or, do the fun, girly-Prom-prep things without worrying about a babysitter. Or, what it would be like to stay up late tonight to see the kids off to the after-Prom party without shortening my night's slumber. (Because Mas will wake up at the same time tomorrow, regardless...after all, he didn't go to Prom!)

Things are getting tougher and tougher here at the ol' hacienda as far as maneuvering around the needs and demands of 13 year old special needs boy. Between the onslaught of diapers, the screaming fits for a plethura of unknown reasons, the spitting, the messes, etc., I now realize that the thing that will decide his fate is....me. His caregiver. I see now that I am going to tire long before I want to.

It's odd to think that people were just celebrating God and Easter and all things holy, when I was wondering what type of deity would give a child to a family, knowing that family would not be able to care for him. It seems like the cruelest of cosmic jokes. I used to try, very hard, to find God in all of this, and yet, it gets harder and harder by the day. I know there are things we are thankful for, and even more things we should be thankful for, but it is hard to gloss over the fact that we are stuck in a no-win situation here. As a person, I have given all to raise this child. As a family, we have given more. As a child stuck in a small teenager-y body, he deserves it all, but as far as what should be expected from people on a daily basis, we are maxed-out.

I keep hoping we will see a sign that we are actually doing things right or that things will start to look up. Or that we are supposed to be keeping him at home and trying to get through this. I don't know if we are right or we are wrong. I just don't know. I do know, though, that we are all weary, both in body and in spirit. If there is a Master in charge of all this, I hope he sees fit to give us some sort of sign that we are doing what we are supposed to do.

Wednesday, April 6, 2011

july?!

Okay, I see haven't posted since July. It seems hard to post when things are going in such a way that there's not much to say.

I think I am slowly departing the pieces of my midlife (who am I? what am I doing? where am I going? i went to college for this?!) crisis and starting to realize that *this* is my life. As John Lennon said so poignantly, 'life is what happens while we're busy making other plans.' And, that seems to be the case.

At 24 years old, I gave birth to my daughter, and started the road of motherhood. Three years later, I gave birth to my son, and started the road of 'special' motherhood. At 41 years old, I am still changing diapers, feeding, worried about safety issues, cleaning up after a child, etc. I surely never thought this would be my life. I thought my son would be playing football, rockin' the trombone, and enjoying his life at this point. I never thought I would be in a perpetual state of apology for his actions while in public, or giving him baths or wiping up his drool or cleaning him up after having a bowel movement that spread stool down to his knees or up his back. I also didn't think I'd be constantly worrying about his future, in a way that will sink you to your knees as a parent and make you want to hurl. I never thought I would have to watch girls point and giggle at him or have adults tsk-tsk us while we are out in public.

It is surely something my son didn't ask for, and also something for which we never could have been prepared. Here I thought I was just giving my daughter a sibling, not changing the course of her life forever starting at age 3 1/2.

Our daughter's life, 'pre-Mas', consisted of reading books, eating healthy meals, going for walks, taking regular naps, visiting family and friends, playing games, laughing, and spending lots of quality time with her mom. Her life, 'post-Mas', was a much different ordeal; full of her brothers' appointments, worry, sickness, medicines, etc. Certainly an unexpected fork in the road.

Our life, as parents, was forever changed upon his arrival. Surely we have much joy as he develops and surprises us, but we are also wracked with concern, worry, guilt over are we doing enough/too much, and just a lot of hard work in the form of caregiving.

If you know a caregiver, you may have some personal insight as to the type of journey this is. It is not for the faint of heart or the weak of back. (Or the ones with a poor sense of humor!) It is truly a lonely path and one without much reward at all; sometimes none whatsoever.

I often wonder how our lives would be if we hadn't wanted our daughter to have a brother. I wonder how a trip in the car would be without toys being hurled inches from our daughter's face or without things being banged against the window or without drool being spewed everywhere. I wonder about our home life, and how it would feel to clean the house and have it stay clean for longer than a half hour. How it would be to walk in public and not have the stares; pitiful or otherwise. How it would be to sleep in one morning, eat breakfast in peace, and not have to change urine-soaked sheets or try to keep the house quiet so he can sleep.

I am sure that we are blessed to have our son, and I am sure that we are grateful for all he has taught us and all he can do. But, there is a lot of work that got him here and even more work to keep him here. I love the kid, but don't love the work, I guess.

It certainly alters our perspective as a family, as a couple, as parents, and also as individuals. I hope we are able to keep up with all that is expected of us as we move forward. The easy answer, of course, is to put him in residential care. The only problem with that is, that we love him and he is our son. Having someone else do his care does not take away our worry; just eases our burden in certain areas. Respite care, while nice-sounding in theory, is a tricky road, as well. It does not find us the person to do his care; it only provides the money with which to do so. Not exactly an answer to our prayers.

It would be amazing if our society learned how to properly care for the elderly and the special needs individuals. I don't think I will see it in my lifetime, though. I guess we will just keep plugging along and hoping that our hard work is paying off in some respect. Oh, what a journey this has been and continues to be.

I hope there is rest for the weary, and a place of calm for the worried soul.