Nashville Lifestyle Photographer | Robyn Michelle
Every so often I like to share personal stories that give you all a little peek as to who I am. Today I’m sharing a bit of my sister’s story as she’s played a huge part in my life & how I’ve chosen the various paths that I have!
The Early Details
Robyn Michelle was born in March of 1983 a healthy & happy baby, as far as my parents knew that is. However, at four and a half months of age she had her first seizure; in fact, she had two seizures that day only a couple hours apart. After that? Not another seizure again for two years, isn’t the body a crazy thing? By August of 1985 she had her first EEG which showed normal results. In addition to the unknown cause of seizure activity, she was having difficulty meeting typical developmental milestones such as talking and walking.
Two months went by, and her third episode of seizure activity occurred, sending my parents back to the hospital. From there, they were referred to a neurologist at Scottish Rite where Robyn had her second EEG, also showing normal results. This was where she started taking medication, which would be adjusted over the course of the years.
In 1991 , she had an MRI done which finally gave some answers! The test showed migrational abnormality, which suggested a diagnoses of Polymicrogyria. This condition basically means that there was abnormal development of her brain before birth; the brain develops too many folds, and the folds are unusually small (U.S. National Library of Medicine).
Learning more of the details as I’ve gotten older, it is crazy for me to think that the Doctor’s weren’t able to give her a true diagnoses until she was 8 years old! My mom recalls Doctor’s thinking she would outgrow having seizures, however to this day she still battles epilepsy. Often Intellectual Disability (back then known as Mental Retardation) goes hand-in-hand with Polymicrogyria.
In her late teens, Robyn had a Vagus Nerve Stimulator (VNS) put in. This is a pacemaker-like device in the body to stimulate the vagus nerve from your brain to your torso. This nerve serves many organs include: the larynx, lungs, heart, & digestive tract (WebMD). This device is similar in size to a silver dollar & is put under the skin towards the upper part of your chest (typically on the left side above your heart). There is a connecting wire under your skin from the stimulator to an electrode attached to the vagus nerve, which is accessed through a small cut in your neck.
The way the device works: The stimulator is programmed to generate pulses of electricity at regular intervals (to be determined by your doctor). A magnet is to be kept near you so that when you need it (such as during a seizure) you can hold the magnet up to the stimulator to create an immediate current of electricity. All of this said to explain that this device can help stop or reduce the severity of a seizure! (One of those moments technology can seem pretty awesome huh?!).
Around my Sophomore year of High School, Robyn moved into a Host Home about thirty minutes from our house. She lives there with a caregiver employed by the state and one other girl with special needs. The thing I have always thought was so neat about her Host Home, is that it is truly a HOME- a typical house, in a typical neighborhood. She has her own room, with her own things from childhood, decorated how she wants- how cool is that?
Robyn has been lucky enough to be with the same Host Home ever since she moved out. It’s been incredible to watch how much she has matured and become independent from this transition. I used to say that this was Robyn’s form of “going to college”- because she moved out, grew more independent from the experience, yet still came home for holidays and birthdays. She even has gone on vacations to the beach,
Memories from My Perspective:
Growing up with an older sister with special needs is a bit different, but some things are exactly the same. I remember playing with barbies, riding bikes through the neighborhood and having typical sister fights. Whenever we went to play throughout the neighborhood, I had to be prepared and know how to act if she were to have a seizure-therefore always thinking of myself as the little big sister. I also remember keeping a scheduling was a big deal for her as change would throw her mood off at times.
Whenever I hear Shania Twain's, "Man! I Feel Like a Woman!" or Alan Jackson's, "Chattahoochie", it will always make me smile and take me back to when we were kids riding with our Mom in the car, windows down, & singing at the top of our lungs. Robyn and I also liked to play Super Nintendo together, and believe me, she was good! I would actually learn some of the secrets from her! Basketball--now that has always been her jam. She has always been good at and enjoyed it!
There are many things that that I admire about Robyn. The first one is that I can assure you, that she will be herself 100% of the time; good mood, bad mood, she doesn’t care what anyone thinks. My sister definitely knows what she does and doesn’t like and one way or another- she’ll find a way to show that!
Second, she is so accepting of everyone exactly for who they are. As much as we fought, and still might be hard on each other, she will always go around telling people about me and how proud of me she is. She might even share a few too many details such as how old I am and where I live, but hey- it’s all in good spirit ;)
Last, is that Robyn will talk to people out and about and before that conversation is over, she’ll have told them that she will pray for them. Don’t you think we could use this kindness from more people in the world?
Robyn still lives in a Host Home (the same one she has since the beginning) and goes to work each day. She goes on special visits with my parents weekly for lunch, pedicures, dinner, going to the bookstore, or to see the dogs at home.
Despite the challenges Robyn has faced, she continues to prove she is able. She is one of the biggest reasons that hearing the word "retarded" used to imply things such as stupid, ridiculous, or uncool is really hard for me. Keep in mind those that your hurting with your choice of words and consider choosing to end the use of the "R Word".