My Mother gave me bracelet when I was 7 years old and I’m not sure I ever treasured a gift so much in my life. Inscribed on it was: Aries – Loving, kind and optimistic. I had to ask what optimistic meant and that word seemed very important, big and complicated. I was born on Good Friday in April and my Mother made me feel extra special for that. Now that I’m 51, I realize that in giving me that gift she convinced me that I was those things. I was loving, kind and optimistic. There’s nothing more powerful in the world than telling a child they possess wonderful characteristics. It was a prophecy for me to fulfill. I would say I’ve lived my entire life proud of my ability to truly be OPTIMISTIC. To see the glass half full, to turn lemons into lemonade and to always carpe diem my day regardless of how it’s handed to me. There’s my brag in all its glory. Happy to share all my faults and shortcomings at a later date.
When my son was diagnosed with autism in 2005 at 3 years old, I knew in my heart that I could handle this! I would do everything I could for him until there was no life in me and even then I would help prepare the world for him before I left. Our autism journey has been a challenging one, but thats okay. You know why? I am strong enough and I’m loving, kind and optimistic. My rose-colored glasses are firmly in place and we shall persevere. I’d like to think that despite our challenges, that I have always risen to the occasion and handled it all with the love and kindness that my son deserves and I believe in my heart that I have. I have to add that I’m pretty sure my son is the sweetest soul the earth has ever known.
In 2013 my son had a strange episode while eating his breakfast. He kept nodding off and it was followed by strange behavior and then vomiting. I rushed him to the hospital and they told me he was fine. In retrospect, I’m certain that was a seizure. Then a grand mal seizure followed a month later. I can handle this. We will be aggressive and we will make sure this doesn’t happen again. He started a modified-atkins/ketogenic diet as well as some brain exercises and he didn’t have another seizure for a year. See!!! I can handle anything. Life: you sure about that? They came back with a vengeance. After doing some research and seeing a neurologist, I felt certain that the next step would be CBD which wasn’t legal in Virginia but some good people were working on that. I found an organic grower and had it shipped to us. He went 8 weeks without a seizure, but I was told that the strain might need to be changed periodically to maintain efficacy and doing that was more difficult than I realized. The next few years, the word titration would be way too dominant of a word in our lives. The entire time that this epilepsy was taking over my every thought, my mother and brother would both pass away. It has been a long 7 years trying 6 different medications, 7 different doctors and trips to both Boston for Tufts, Florida for a specialist, UVA and VCU and although he possesses none of the true epileptic traits, nobody can make them stop. NO medication will stop these seizures and they’re awful. We watched and experienced behaviors from my son that defied who he is inside. Aggression and anger that’s not him, but instigated by medications that weren’t even working. We’ve titrated and changed, we titrated and increased, we titrated up and down and all over the place, but nothing was working. EEG’s at home, EEG’s in the hospital with extended stays, every therapy under the sun and nothing has worked. I won’t stop trying because I can’t. SOMETHING is setting them off and although I’ve been told that maybe I should just “accept” them, I just can’t.
The last couple of years I’ve had these episodes that I’ve been told are very similar if not PTSD. Whatcha talking about? I’m not a war veteran. I’m a mom, how the hell could I have something like that? When I hear a loud sound or even a sudden one, my entire body reacts. I feel adrenaline coursing through my body, crippling fear and this is usually followed by intense fatigue. Sometimes this happens three or four times a day. You see, my son is 18 now and almost 6 feet tall and when he falls, he falls like a tree with no awareness to protect himself. We’ve had seizures in the bathroom, living room, bedrooms, schools, busses, cars, jeeps, movie theatres, relatives homes, streets, parks, pools and grocery stores. He is watched constantly, and we are able to cushion most of his falls, but I live in fear that we’ll miss one. That the seizures will cause damage or worse.
I thought I could handle anything. I thought I could see the positive in anything, but this one is the challenge of my life. It feels like it’s changed me in ways I can’t even explain. My memory is an absolute trainwreck because of the constant high levels of cortisol in my system from the panic/anxiety episodes. Not normal aging bad memory, some crazy next level stuff and well my whole health took a huge nosedive. So I decided that 2020 is the year of self-care for me. I am working hard to get healthy and manage the emotional and physical manifestation of epilepsy. I even hate the word. The main reason I wanted to write about this, is first and foremost, for myself. I have a lot of wonderful in my life, so this isn’t a pity piece. I have an amazing husband, a gorgeous daughter with her own strong will tackling life and making her way and friends who make me smile every day. Two restaurants filled with people who are kind, funny and make work a good time. My life is great in so many ways. And please don’t think for a second that Aidan isn’t living his best life. Whatever circumstances exist, we spend time doing the things he loves to do and he is an overall happy young man. Like most huge obstacles in life, it does NOT ruin or rob us of happiness.
Nine years ago, I joined an organization called “TACA” The Autism Community In Action. We are autism families helping autism families and it’s brought me my tribe. Support and understanding are a huge piece to getting through all this with your sanity. If one mother reads this and feels understood, can relate and doesn’t feel alone, then I would be truly grateful.
Here’s to bracelets that teach us how to see ourselves. Mothers who see the light in us. Children who make us better people. The lessons that life brings us. The understanding and love in shared experiences and the peace of mind in exposing our hardships and heartaches.
Ps. Maybe this could also help the people in my life cut me some slack for not remembering a single solitary thing ever. Please and thank you.
Pss. I would also appreciate some credit for not using all the profanity that comes so naturally when talking about seizures.