I often wonder if I am too much, too in your face, or posting too often on my social media platforms.
Sometimes, I get a comment, a “like,” a text that compliments my bravery, my words, my strength. I find myself apologizing; sometimes questioning if it was o.k. to put out into the universe. A feeling of anxiousness may then plague me- was it too much information? Did I expose my internal thoughts too strongly? Did I offend someone?
I start to question my own advocacy. I think that has been a trend my entire life; making sure others validated my decisions.
But no more.
I have spent too much time in my life worrying about what others think- but I would be lying If I sat here and told this ludicrous story that I no longer care and will never care again. That is just part of the human spirit. In so many aspects of my life, I care how I am perceived. But the fact of the matter is, despite me caring or not, I will not apologize for who I am or how much and how often I share information.
The truth is- I am unapologetic.
I have spent too long hovering my cursor over the “publish” button- deciding if I should post certain content or not. I have spent too much time thinking about what I posted on my Instagram- Is it inappropriate? Will it send the right message? What I am putting out into this totally weird space, “social media,” is just the truth and my vulnerable, real, unapologetic, me. This, I can swear by.
The irony is not lost on me. Here I am, not apologizing, but perhaps justifying? Either way, our journey is not over yet. So look out world, I have more content coming your way.
Thank you for posting this article, i truly appreciate hearing your story. If we all could connect in a positive way i just think how more enriched of a society we would become. Writing with thoughts and prayers is not enough and I won’t tell you how brave you are because i can imagine you already know this. When someone tells you a story a story in return should be expected.
If you looked into my eyes today you’d see nothing is wrong with me but in 1989 at the age of 14 after a head injury you like like my mother was may have been very worried about my future. All it takes is an instant and life as we know it can change and it was scary. But like everything in life it’s also temporary.
I struggled with tonic/clonic grand mall seizures for 7 years till I found a medication to control my seizures. I struggled through high school with short-term memory problems but I choose not to give up. I was deemed with a disability and as I grew older it worried me that I wouldn’t be able to hold down a job or get an education. Then around the age of 22, it turned out instead of this fear becoming my weakness I choose to use it as my strength. The fear of losing my life and my future to a disability scared me so much I choose to deny it and work with what I got.
My short-term memory may have been damaged but it turned out my long term memory wasn’t. One word was enough to give me hope and that was Neuroplasticity. It doesn’t happen over night for sure but over time it was my miracle. Trying to figure out how to remember something long enough to store it into my long term memory was a struggle for a long time. I put myself through college twice and earned two associates degrees so my fear of not getting an education was over in 2004 and 2014. It wasn’t easy but collage was the neuroplasticity I needed and it helped change or rewire my brain. I hope that sharing this with you helps you look forward to your future and Haileys future. Because both of your stories is far from over. You will find many small victories always wanting a bigger ones like we all do. Celebrate those small victories because down the road they lead to bigger ones.
Wow, thank you for sharing your story. I had tears in my eyes, but so much gratitude towards you for sharing your story as well. This is seriously why I share our story, because it is has been so helpful in hearing from others, like yourself, about the amazing people out there who have not had it easy. “Celebrate small victories because down the road they lead to bigger ones…” When I read that last line that you wrote, I had so so many emotions. It is true, the small victories that we see every day, will one day lead to something bigger for our girl. I am so happy that you shared your story and you are such a strong and inspirational individual.
I read a story you wrote on the Epilepsy Foundation website. I donate on occasion. For some reason, looking at your daughter’s face made me read the story. It brought me back to when my daughter was within her first 3-4 months of life, prior to things going downhill quickly. And how one can get that gut-wrenching feeling when something is wrong with their child. My daughter is now 24, wonderful and beautiful and my favorite person on the planet. She still has seizures (GMs about every 7-9 days; sometimes just one, other times multiple grand mals in a day). So for what it’s worth to know, I keep fighting; we keep fighting. We keep trying to make her life the best it can be. (she has a rare disease–a novel gene mutation in SNAP 25). I’m not sure why I needed to reach out, but I just wanted to say “thanks” for sharing your story. And the best to you and your beautiful daughter.
I want to thank you for reading my story, first and foremost. Secondly, I appreciate you sharing yours…this is what it is all about. Advocacy, connections with other families, and hearing the great successes of others who fight every single day for their children. You reaching out is so special because it not only shows me that I am not alone, but it also shows that somewhere, somehow, maybe me sharing my story too, will help others. Thank you for reaching out and it sounds like your beautiful daughter is so lucky to have such an amazing parent. The best to you as well!