My mother-in-law recently asked my husband and me what we have planned for our son’s future. What she initially meant was what our plans were for him in the near future, such as what hobbies we wanted him to inherit, what skills we wanted him to develop, and so on and so forth. I wasn’t sure how to answer her question. What I do know is that I want him to learn how to swim, by the very least understand Russian, which is one of the two languages my husband and I speak other than English at home, and just like I stated in my previous post, I want him to learn seizure aid. By knowing seizure aid and CPR, he could save someone’s life. Not just mine, but a complete stranger’s too. Just as I was writing this, I stumbled upon a video on Instagram of a woman sharing her story of how she suffered a cardiac arrest on the streets of New York when she was 24 years old, and the only reason she survived was that two men took a quick action and performed CPR on her. She is now a motivational speaker and encourages everyone to learn CPR.
That’s what I want for my son. I want to use my own illness and experiences with it to pass on the knowledge I have about it to him. Epilepsy is no joke, and I want him to understand that. I want to pass on the knowledge I have to my son on how he can save a life. He doesn’t have to be a police office, a firefighter, a dispatcher, a nurse, or a doctor to do that. There’s so much that I could show him through my own life. My life was never ordinary. I went through some sh*t. Not too many people who have the life I have can say that they have it all. But I do. I want to show my son just how fortunate we are as a family. I want him to learn about disability not just through me, but through other measures too. I’m not talking about books per say as most books about disability are written by doctors who retired in 1975. I read one about cerebral palsy when someone attempted to prove a point to my husband that I wasn’t good enough for him and failed to do so because it was absolutely not applicable.
Instead of learning through books, I want him to learn through life experiences. Being streets smart is much more important than being book smart. That’s how I feel based on the world we live in now. Even when I was growing up in the 90’s and 200’s, it was starting to feel that way despite the fact that it was a completely different world than it is now, and it will be even more different when my son gets older. I’ve written about in previous blog posts on my experiences of going to a camp for people with disabilities, specifically cerebral palsy, every summer for four years during my teenage phase. I didn’t like my experience there because I felt like an outsider. I was the most independent one out of all the girls there and took on the leadership role because of it. At some point, the girls took notice and started hating me for it. I had positive experiences at camp, though, as well despite the teenage competitive drama. I learned so much and did so much that I wouldn’t have otherwise such as horseback riding, arts and crafts, and kayaking.
My mother-in-law’s question about my son’s future made me think long and hard on what I want for my son in the not-anywhere-near future. I want to show him the world through my eyes. I want him to have experiences that will make him a better human. I want him to be an empath. I think the best way for him to become an empath is to expose him to my world and the world I’d been a part of. I want him to understand that I’m a highly functioning disabled person, and there’s a whole other world outside of his house where disabled people like me aren’t actually like me. The best way to do it is, in my opinion, for him to work as a counsellor at the camp I used to go to for four summers in a row as a teenager.
For our Valentine’s Day celebration, my husband and I had a sushi dinner and a movie. Our movie pick was Netflix’s ‘Your Place Or Mine’, which stars Ashton Kutcher and Reese Witherspoon. It really wasn’t a bad movie. At least it wasn’t as bad as people made it out to be. Yes, there was absolutely no chemistry whatsoever between the two main stars, but the movie was cute, and realistic, nonetheless. Watching the movie reminded me of a recent interview that he did with his twin brother, who has cerebral palsy. In the interview, he talked about how he came to the realization that it was important to treat his brother as an equal despite his disability. That’s exactly what I want for my son.
I can only speak of my own experience, but throughout my time at camp, the counsellors treated all campers as friends. They weren’t that much older than us, so they could’ve been our friends in a world outside of camp. They never treated us as our caretakers even though they technically were. For the two weeks we were there, we were their responsibility. They were responsible to keep us safe, fed, uninjured, and healthy. For some of us, the experience of being a camper marked the first time that we were away from our parents for a longer period of time, and that was a very big deal. The counsellors were like our surrogate mothers for the two weeks that we were there. No matter what difficulties they went through with us, and there were a lot of them, they never treated us anything less than, and I very much appreciate that experience.
I want my son to give that same experience to others like me, and in addition to that, I want him to learn from those who are like me. Just as I said before, the best way to learn isn’t through books or lectures, but rather through real-life experiences and exposure. It’s hard to explain to someone what life cerebral palsy is like. That’s why I don’t even start explaining it to anyone. But I will have to teach my son about it eventually, and that’s what I feel will be the best way to learn. Sometimes words are just not enough.
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