Wednesday, April 6, 2011


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.


Anonymous said...

Once again, I must tell you how much admiration I have for you, your husband and particularly your daughter. She seems to handle having a special needs brother with patience and grace. You are indeed special people. I also need to tell you how much I personally love your son. He seems to take most everything in stride and finds joy in the coolest things....for instance that photo of Skipper!! Love to you all.

Singing Pilgrim said...

I pray you find the perfect person for the respite care. I can't say I know what it's like, but I've watched dear friends struggle through a similar situation. Hang in there and thank you for sharing your struggles so honestly.

TrippingWithTomatoes2 said...

"I love the kid but don't love the work"...truer words were never spoken. I ran across your blog randomly today and just want to send you a (((hug))).
Just another Mom...