I'd like to introduce you to someone. This is my step-brother, Johnathan. He just celebrated his 20th birthday, which is absolutely crazy -- I met him over 10 years ago, and I was sure he would stay little forever. We have such a special bond - I am his Moose, and he is my Monkey.
Johnny enjoys life more than anyone I know. He is constantly happy and smiling and his laugh will never fail to make me laugh too. He loves going to school, baseball games, and bowling. He loves to watch game shows, play with musical toys, and mimic everything he hears. One of my proudest moments is teaching him to say "Talk, talk, talk, talk, talk." (Sorry not sorry, Ruth!) His favorite food is steak and mashed potatoes, which he of course had last week for his birthday. Within seconds of being around him, he can put a smile on your face.
You might notice his wheelchair...
When Jonathan was only four months old, he was shaken by his babysitter. He spent many weeks in the hospital as a result and over the years has had multiple surgeries and too many hospitals stays to count. He takes medication twice a day, and a simple change in the dosage or time it's administered can make him sick. He is susceptible to seizures, sensitive to loud noises, is developmentally delayed, and is wheel-chair dependent. As a direct result from being shaken he has Cerebral Palsy, which is a Aquired Brain Injury or ABI. His ABI has caused him hearing and vision problems, speech problems, gastrointestinal problems, all on top of the cognitive and muscular problems.
An acquired brain injury is an injury to the brain that is not hereditary, congenital, degenerative, or induced by birth trauma. Essentially, this type of brain injury is one that has occurred after birth. The injury results in a change to the brain's neuronal activity, which affects the physical integrity, metabolic activity, or functional ability of nerve cells in the brain.
There are two types of acquired brain injury: traumatic and non-traumatic.
A traumatic brain injury (TBI) is defined as an alteration in brain function, or other evidence of brain pathology, caused by an external force. Traumatic impact injuries can be defined as closed (or non-penetrating) or open (penetrating).
A non-traumatic brain injury is an alteration in brain function or pathology caused by an internal force.
Johnny's injury is a TBI. And it really is just that: traumatic. Talking about Shaken Baby Syndrome isn't easy, but it's something that's a part of many people's lives, including mine. I will spare you the horrific details, but feel free to reach out to me privately if you have any questions and I will answer them to the best of my ability.
Thankfully, the Brain Injury Association of America recognizes March as Brain Injury Awareness Month and conducts a campaign focused on awareness. The BIAA has chosen March 13th as Brain Injury Awareness Day on Capitol Hill. There will be an awareness fair, congressional briefing and a reception. There are also action items you can do from home. For more information, please visit their site here: https://www.biausa.org/events/brain-injury-awareness-day-2019. This year's theme is #ChangeYourMind and as part of a fundraiser, they are supplies t-shirts here. Donations are also accepted on the BIAA website.
If you care to help my cause directly, please see the link below for an ongoing GoFundMe set up to help raise funds for a wheelchair accessible van for Johnathan. At the age of 20, he is nearing 200 pounds, is so tall, and would really benefit from being more mobile thanks to a custom van to accommodate his large wheelchair.
GoFundMe: https://www.gofundme.com/JonathanClark
Below is a collage of my favorite pictures of us from over the years. Enjoy! Share! Donate!
