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A hug is duct tape for the soul.

 
This post is by Mary Burgess-Smith, who has a Ph.D. in Clinical Psychology from the Center for Humanistic Studies and is the mother of a child with a traumatic brain injury. She is the author of T and Me: Road Without a Map. Mary resides with her husband and daughter in Birmingham, Michigan. We welcome her to Jack's TBI Blog, and hope she'll be a frequent contributor.

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My journey through the maze of my daughter’s head injury is a continuing process. In reflecting back through the years, we found the greatest lack to be in rehabilitation centers. The people who had the most interaction with my daughter Tania often were the ones expressing the least love and concern. All too often it was only a job for them. These aides often work for minimum wage and the turnover is tremendous. There is very little incentive to learn more about brain injury; nor are workshops usually offered.

On the other hand, these same rehabilitation centers bill the insurance companies a great deal of money. Obviously, the money goes to the top for people who have little interaction with their brain-injured clients. We found clients sitting around, with no interaction coming from anyone. The staff was chatting and selecting which television show they wanted to watch.

I saw a positive change with a recent physical therapy admission for Tania recently. This could be due to my request for her own staff.

I am thinking how my perception has changed over the long years. This has a great deal to do with my expectations. When she finally woke from her coma, it was long after the medical profession offered any hope for her. My thought was “just take good care of her”. This quickly changed to “she woke up; anything is possible.” For me there were now endless possibilities. Of course, this proved unrealistic. My elation about her waking from the coma caused me to think this way.

Sometimes there appears to be lacking a bit of common sense in the medical profession. Tania seems to need a lot of sleep. Her psychiatrist keeps “tweaking“ her medications trying to find a balance between Tania going to sleep at night and not being too sleepy during the day. When I let her sleep until she wakes up, I find she needs about twelve hours of sleep. Also, in my research I found that Vitamin D helps with chronic fatigue in the brain injured. I have added this supplement. In realizing what her body has gone through and continues to go through, this need for extra sleep is not surprising. When I see how much effort it takes for her to walk, it looks exhausting.

My thinking about Tania and spirituality has also changed. She attends a class called “Gems” on Sunday mornings. This is a special needs church class run by our friends who have a Downs Syndrome daughter. Their daughter Becca has become close with Tania, and they “hang out” at least once a month. Seeing Tania in Gems class is truly amazing. She looks up and seems transfixed. Her face is full of light and peace.

When I read to her from a novel of an Amish family, fear of death came up and Tania shook her head no. I remember that she had a near death experience following her accident. I also puzzle about her nine months in a coma, and I wonder what was going on within her.

I have recently been reminded of the changing nature of brain injury. Tania had a seizure, the only one she has had. Her motor skills are not as good as before, and her swallowing necessitates the use of thickening for liquids like the Diet Pepsi she so loves. I am wondering what the future holds in store for us. She is such a “trouper”. She retains her pleasant disposition in spite of her many limitations.

A constant for me having a brain-injured child is stress. It is part of the continuum and always there. It bombards the family who has a brain-injured child. I am sure I can speak for other mothers in this situation: we are usually more overwhelmed than are other family members. Stress is a fact of life for everyone, but our families are totally immersed in it and can’t get away from it. Anything we can do to manage stress is important. I have found simplifying, organizing, time-savers, and especially support networks are the most helpful.

Mary Burgess-Smith, PhD

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