Being a Child makes all the difference when it comes to having a traumatic brain injury. There are so many factors I think that aide positive recovery, besides the support of loved ones and community. Being a child made a significant difference in my case for several reasons. I never realized until long after I could get up, move, and do for myself a little more; what or how the long term affect of my head injury and being a victim of a violent crime, would be. My only job was to rest and recovery in the hospital and then afterward as well. I never knew that doctors had little hope that I would recover fully, like a friend of whose daughter was in a car accident a couple years ago and has a TBI, said you are constantly, “hearing doom and gloom…” That is what my family heard too. The answers from doctors and specialists were, “She may never walk again.” “I f she does walk we can’t say that she will ever talk.” “If she lives we don’t know what her prognosis will be.” This is not like going in and having a hip replaced or a surgery, where many times the outcome is always better than not having the procedure done.
The brain is so complex different parts do different things in your body, swallowing, movement, continence, speech, executive decision-making, personality, facial expressions, mood, sight, hearing, smell, taste, and a whole host of things I can’t even think of. So in a nutshell all depending on million factors anything is possibly or not. This is one of the scariest things that anyone you love can have.
Getting back to what I was saying, being a child is helpful in that I didn’t have to know all these scary and possibly negative outcomes. I only knew I had to get back to where I used to be and that was always my over riding thought in everything I did. But, like anyone with a head injury no matter how small, it is frustrating to try things you used to do with ease and now you can’t do or struggle to do. Also being a child you have a tendency to be very resilient and more willing to try to work at it. You are less aware of the future and you focus on what is now.
You are less willing to think you can’t do something and actually out of all the negative effects of a TBI one weird thing is that, you don’t have the awareness that you can’t do the things you used to do. In fact it’s like denial without actually being psychological, it is purely neurological. One is not aware of what their limitations are. This can also have great negative effects because people try to do things that they can’t or haven’t been able to yet and the hurt themselves worse. Like I tried to ride a bike before I had good balance and ended up with 14 stitches on my chin. This is a very small example. I was recently reading a book about a doctor who was hit on her bicycle by a car and she had her partner come pick her up at the scene and for several months could not take care of herself, not actually being aware that she had received a TBI, because she walked away from the accident.
Also being a child lends the possibility and usually the inevitability that your brain while it is still growing until you are about 16, can make new connections and re-route things from one place to another. It can also heal more easily than someone who is older. Older brains heal but it is harder to make new connections and get similar results; looking closer to what the person used to be able to accomplish. The brain is quite fascinating and all that we know about it, we still don’t know enough.
Some of the things that my family did to help me build coordination without me even realizing they were trying to help me heal, were things like putting a pool in the back yard. We had a 4 foot deep above ground pool and I went swimming most days in the summer after my head injury. I was never a coordinated swimmer but I swam under water a lot, this was very good for strength and lungpower. I now joke that it was odd that we had a pool because I had seizures but if I had one, at least we weren’t in the ocean and someone would see me on the bottom. I know morbid, right. I also signed up and played on the first girls little league team. I was a Maroon we didn’t have names we had colors. I joke that I played left field and what little 9-11 year old was going to ever hit a softball to me? However; I never joke about this, I was part of a team bringing in a new era where girls played in a little league. One other thing; my cousins Kim and Terri Taylor danced at Miss Flossie’s Dance Studio in Lewes and I was encouraged to watch and see what I thought. Well being the Tom Boy that I was I chose Tap and I refused to wear a tutu. We did have a recital and I was the oldest kid in the class so I wore Top Hat and Tails with leotards; they were the only thing I would be wearing that even resembled a girl. I did a solo of the song “Sing” and did a little solo number before being joined by the group. Not many dry eyes in that recital that night.
President Obama signed legislation last year, making The Year of the Brain where millions of Dollars of money will go to research on TBI and other Neurological disorders, making 2013 forward the biggest initiative that we have ever had on studying the brain and its abilities and diseases. This one initiative that will span a number of years and could find cures to so many Neurological problems may be cured or mysteries solved. Maybe one day the uncertainties of someone having TBI will be less riddled with fear, disappointment, and disability and more linked to the real journey of promise and feeling of hope and success.
There are so many different factors that make someone having a TBI have a successful recovery and that word successful is very relative when it comes to brain injury so there is not one injury that is like another and not one recovery or rehabilitation like the other. I would like to think of us as Snow Flakes, because we are all so incredibly different, you will never see the same results twice.
Amy, Thank you for your writing! I remember the first season of the Lewes Little League softball. I remember pitching to you and thought you were amazing. I don’t know if you knew but my son Chris was born with a brain tumor. When he was little he didn’t know that he was struggling with something that others found easy. Even his Dad and I didn’t realize the difference until his sister came along and could see how she could track task and school work with more ease. We noticed that his focus was short. As he got older, some didn’t understand why it was hard for him to do simple math and other things. But at 22 he is attending DTCC taking 2 courses a semester. God Bless all with TBI and perseverance.
I had no idea that you had a son with a brain tumor. You all are very strong he is like all of us with TBI, he is a Snow Flake. All unique and different from every other one. I am so happy he is overcoming and moving on with his life wonderful for him
Thank you Missie for writing and I hope these posts help you. Anything I can do please just ask
Amy thank you for your story. I am a Lewes girl and have a son who also had a TBI at the age of 16. Like your parents after brain surgery we were told almost the exact same words… loss of speech, won’t walk , loss of swallow function, taste, smell, blind in one eye and much more. Thank my son god did not listen to his team at AI Dupont and was determined proved them wrong. After graduating from high school he earned a BS in Anthropology from UD. At 28 he choose to go back to school and is now a Certified Respiratory Therapist. The brain is amazing and can reroute around the damaged area in youth. God bless you Amy. Chris Hocker Allen
Chris, I am so glad that your son well and moving in his own path. It is always amazing to hear other’s stories, I will be honest the statistics are always against the brain injured person. I want that to change. My mom was told to take me to the Charlton School in Dover. That school is for children with Developmental Disabilities, which in fact your son and I could have received state Funding for. I never did Thankfully I went to school It is another blog soon. I recall myself sitting with children in wheelchairs and they were putting pegs in a board. I sat and helped them while we visited. We soon left and my amazing mom asked me what I thought. I said, “It’s ok, the kids were nice.” We never went back. And not that the Charlton School has anything wrong with it, it was not the place for me. It may fit other people’s needs just not mine.
I am so happy that I am able to do what I do and in fact I work for the State in the Developmental Disabilities Services. I am considered a bit a of a Rabble Rouser. I think people can strive and I have seen them do it, so my feeling is let’s think outside the box. Thank you for writing and Than God your son is an amazing guy and didn’t listen to the doctors. Thank you for being an amazing mom who let him do what he felt was best for him, even though I am sure you had great anxieties over all that he tried to do and later accomplished. I hope you keep following. Thank you.
Great writing, Amy. It is good to read this and I’m sure healthy for you to write it. Youth was on your side here. Hugs.
Thank you my friend you are now living this twice. I love to write and I thank you for your awesome support. Love you Amy.