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Thursday, April 8, 2010


Nobody in their right mind would do this. That is what I say to myself every time I am trying to maneuver Hillary from her bed to the bath tub. The process involves first getting her into the sling, then lifting her with the motor unit, pushing her along the track suspended from the ceiling to the doorway. Then I climb the step stool, open the door that adjoins the bathroom, reach in and grab the next strap and hook to attach it to the handle, lower her until the bathroom side strap is taut, unhook the main strap and hook it onto the bathroom strap loop, raise her up until the extra strap is slack and unclip it, then climb down from the step stool. Next thing is to get around the end of the swing away shower curtain rod, position her over the bath seat in the tub, hold her legs so that she won't get them caught between the seat and the edges of the tub and lower her into the bath seat and unhook the sling from the motor. Once I have the motor (still suspended) secured out of the way, I can turn on the hand held shower and commence washing my 17 year old daughter. She doesn't like it and doesn't keep still. Shampoo and soap get in her eyes, occasionally she gets a mouthful of water, and she tries to pull away from me when I want to wash under her arms. Telling her to be still and relax is pointless but I do it any way hoping that one day she will understand and take my advice. Once she is clean and soap free, the whole thing starts in reverse with a towel around her so she won't get chilled, and a quick stop to put her tangled hair into a ponytail so it won't get tangled even worse during the drying off and getting dressed process. Once she is dressed and finally in the wheelchair, I begin the task of detangling her hair. Rub in some anti frizz and start combing with a wide tooth comb. She hates this, but it must be done. She cries and keeps moving her head but I just keep going. When all the tangles are out, here comes the hair dryer. This she tolerates a bit better, but still isn't thrilled with it. Finally her hair is dry and I can once again comb it and put it in a pony tail which then gets braided. After and hour and a half Hillary is clean and ready for breakfast. Like I said, nobody in their right mind would do this.

But I am lucky. Hillary is mostly easy going and once the physical things are done she's happy, it doesn't send her into hours of screaming. Not every parent is so lucky, and I thank God that I have a child who can easily be soothed. Choices are few when you become the parent of a child who has special needs. You can keep them with you and do your best to care for and protect them, give them as happy a life as it is in you power to provide, or you can give them up, let someone else do it. I don't sit in judgement of anyone, we all do the best we can within the parameters of who we are and what our situation is. Sometimes it is hard to think that, not to judge others, or ourselves. If anyone is judging me, it is ME. Couldn't I give her more time, better care, a happier life.......etc. But when I take a moment to just sit down and consider all the options and how happy Hillary is, I realize that I am simply doing the best that I can and while perhaps someone else could do it better, I'm doing a darn good job--even if I'm not in my right mind.

1 comment:

Lisa said...

YOU are a WONDERFUL mother and don't ever forget it! My descriptions of our days would vary somewhat, but truth be told, we could never imagine someone else taking care of our kids instead of us. They are a treasure that we want to embrace while we can. As tough a job as simply the custodial care is, we can't imagine not being the ones to offer our children this care. Having someone else do it is not an option and we would not be happy. Our kids, Hillary and Erik would not be happy either.