Sunday, April 28, 2013

Sunday Stroke Survival~ What Your Children Can Teach You

Last week, I touched on some of the problems my youngest daughter and I share. You see she is a traumatic brain injury (TBI) survivor and I am a stroke survivor. The learning and relearning processes are very similar. Children learn from their parents, but little thought is given to what we as parents learn from our children.

Yes, we learn about life but so much more. I often say I use my children and grandchildren in my stroke recovery and it's true. I am now using all the learning strategies I taught with her with for me.

On the 20th of this month Stroke Tattler ran an article which I didn't post first here on my blog. You can read it HERE. The gist was dealing with the school system with a child I knew in my gut had a problem. Although it took seven years to find out the real answer to the question,"What's wrong with my child?" We found out and did our best to teach her how to cope with the traumatic brain injury which caused her problems.

A lot of damage went unaddressed in that seven years which had to be dealt with.
  • Feeling stupid
  • Low self worth
  • Under achievement
  • Depression
  • Inappropriate reactions
These are hard to handle as an adult, but when you are ten years old it's a mountain of issues. We had to educate ourselves, go through trial and errors to fix them, and be encouraging at the same time. It wasn't easy, but we did it. It was another seven years spent remolding her image of herself from brain damaged to a person anybody would want to be.

We reinforced the negative (slow, retarded, stupid) with positives (unique like God made you, ability to think outside the box, fresh take on an old concept). How she could take pride in being unique instead of being singled out from the crowd labeled different. The kids even copied her hairstyles. Thinking it was cool. All of this led to something we coined as "Jennifer Logic." It was strictly hers. It was logical although she went around curved lines instead of just straight A to B. The irony was she was right when she explained her reasoning.
Jenn at Christmas toy drive 2001

It was just a fresh take. It also had it's own brand of humor. Like this picture from high school. She had just ate lunch and was stuffed and she was an animal. So she got in the box. When someone said stuffed animals had hair and were furry. She let down her hair and fluffed it out. It was down to her hips and she looked like Cousin It still standing in the box marked "Stuffed Animals." "Any more comments," she asked.

But by feeling unique, it empowered her. Although she never wanted to be part of the popular crowd, she was. She was also the voice for every kid that had problems and befriended them with open arms because she was one of them also. She knew what it was to be different than anyone else and take ownership of it. She took what we taught her and put the Jennifer twist on it making it her own.

Jenn in college 2010
When in college in 2010, she was diagnosed with a serious problem. She had graduated from high school and a specialty school already. Her Hemochromotosis dumped large amounts of iron forming tumors in her brain. It compiled into  huge chunks of iron attaching itself to the scars of her brain because of her brain injury. Because of the proximity to her brain stem, surgery wasn't an option. She would die in the attempt to remove them, or very likely be a vegetable for the rest of her life.

Everyone was brokenhearted about about losing her. She had this uncanny way of making everyone love her. The neurologist gave her the "any time now" speech and she'd best get her affairs in order. I held my child as she suffered and cried, "but I'm only 23. I haven't begun to live yet." Still she continued in college while we started looking for alternatives.

What she learned from me, never give up until you are dead and follow your dreams. What I learned from her, my words in action. While I had encountered several bad twists of fate in my life and beat the odds to achieve what I wanted, I have never faced death so bravely. She fought and fought hard in her own unique way.

Jenn and her stepfather 2011
Job offers started rolling in from all over the globe upon her graduation. But she hesitated. She was still under an experimental treatment protocols. Others in the programs had died or become too incapacitated to continue, but she rallied. The treatments called for injections into the brain stem via the back of the neck. She exhibited Parkinson like body movements and a worsening aphasia problems but still she continued every two weeks. My future son in law went to one of these treatment sessions to hold her hand during it. He passed out. He just couldn't believe that she was letting them do this to her. But it was keeping her alive.

Jenn and James 2011
Then she became pregnant. The treatments had to stop. She refused to abort the baby. "Don't worry Mom. I'm in God's hands now," was all she said to me. A month later we were in the neurologist's office with the latest set of CT scans. "Tumors? What tumors?" They were gone. She had a lot of complications with her pregnancy, but she presented me with a beautiful grandson in 2011. The doctor's words of "Any time now" was true, but not today. It's true for all of us.

I taught my children a lot over the years by leading by example, but they have taught me the same way. The coping techniques I taught her so many years ago have a voice in our daughter now as she encourages me not to give up and to keep trying. Could I do any less?

Nothing is impossible with determination.

2 comments:

Hilary Melton-Butcher said...

Hi Jo .. this is an amazing piece of writing ... the brain does heal - and that always staggers me ..

To read your words of encouragement, to appreciate Jenn's journey through her school days and that strength that she garnered by being who she was .. and accepting it, while dealing with it ... becoming a leader because of adversity. I know of a youngster here who lost her father very young ... and she is a confident, determined woman ..

You should publish this .. and it definitely should be read by others ...

Wonderful words .. thanks so much for letting us know and giving us an understanding and insight into the wonders of the body and its healing process.

Enjoy James - great to have a grandson ... so pleased for you all ... cheers and lots of them - Hilary

J.L. Murphey said...

A dozen years ago this daughter blasted her biological father for doing this to her. (That's another story). But then she thanked him. She is the woman she is because of his actions.

Neurologists have just realized in the past decade that the isn't cut and dry that it does relearn.

As far as publishing this story...I did...here. And it is also a prt of a nonfiction I wrote called "Wild Child: Coping With TBI." I am currently trying to get the rights back to republish.