Jayd was born with Friedreich’s Ataxia (FA), but was only diagnosed at about 14. A few years after she was wheelchair bound. Friedreich’s Ataxia is a fatal neuromuscular disease. The disease in basic terms causes difficulties walking, loss of feeling in the arms and legs, and impaired speech. It damages parts of your brain and spinal cord, and can also affect your heart.
I take a great amount of credit for meeting her when I did, high-spirited, short bright red hair and a killer smile. She rolled into my life, and quickly became a very solid part of me. I can still picture it now, me pushing her chair, her turning her head to laugh at something, and people staring as if we knew something special that they couldn’t figure out.
I’m not in any kind of denial about the human life cycle, how people die, new generations are born. I’m just kind of pissed actually. She’s almost 22 years old. She should probably be the most bitter, selfish and resentful person at her age.
She’s not; sometimes I think I hold all of the above qualities but she just has all the good ones. She is playful, and kind, and assertive. The one thing Jayd is not, is a victim of her circumstance. The real victims here are the people she has in her life. We all feel sorry for ourselves; we don’t want to lose someone who embodies such an otherworldly magnificence.
The hardest thing is to watch her complete a simple task and wince in pain. I see the embarrassment on her face, she cringes when she asks for help. I hate that she feels like a burden.
She told me that after reading “The Fault in our Stars” that she, like Hazel, felt like a grenade.
She is more like a firecracker to me, explosive, daring and beautiful when she flies.
I haven’t met someone as motivated to live as hard as Jayd. If anyone can make us feel guilty about how much we waste our time on insignificant drama, and waiting for opportunities to happen to us instead of chasing them, its her.
She is anything but perfect; we still annoy each other to no end. But she is my hero.
My hero is withering away before me; she’s losing muscle, but gaining emotional strength. She can no longer hold herself up the way she used to, but she’s holding her own. Her arms and hands shake, but she takes your hand anyway. Her heart isn’t what it used to be, it’s starting to pain in her chest, but it’s the biggest heart I’ve ever come across. She cries a lot easier these days, but it’s so beautiful, you just cry long too.
To Jayds mother, Carrol Dell, you are an inspiration to every single mother out there. You do everything and anything in your power to make your daughter smile. She is your creation, you raised her as a fearless and striking and powerful woman. Thank you for everything you do. I look up to you.
To Jayd, I have no words to express the amount of laughter and tears you have brought into my life. I love you for both. I can’t imagine a world without you in it.
Read up more about the disease here.
Jayds blog: Face the Sun
Jayds Facebook page: Jayd with a Y
“So the truth is we are all dying and we all will, but are you living? Are you seizing the day? If so how, what is it that you are doing that’s so different? People may live their whole lives and still not know what they actually did to live; they could have never taken a chance to be remarkable or to be an individual. So start with something new and different, now. One of my favourite sayings goes like this ‘The best time to plant a tree was 25 years ago, the second best time is now’. – Chinese Proverb”- Jayd Dell