I’ve tried to write a post for a while now. One about a flare up as a mom. One about appointments as a mom. One about existence as a mom. One about…anything as a mom. And I haven’t been able to. As a mom, I’ve been too tired.
But, now as I sit in yet another waiting room I have the time and the emotion regulation enough to do so. (Especially since I’ve been in this waiting room for hours before). This is the waiting room of the neuro-ophthalmologist.
Anyway…
Before having a kid I lived in the mindset of ‘I will take each ms, and health, challenge as it comes.’ And then I hit a wall; in august my vision went wonky. And I say wonky because I have no other way to describe it. It took time for my eyes to adjust to light and dark, I thought I was having some blind spots that were new, I was having trouble focusing, etc, but no one thing to pin point when doctors asked me to explain what was happening. Because I couldn’t be seen by a specialist, I got an emergent MRI and received a three day dose of IV steroids.
Fast forward to now, 3.5 months later and I am finally being seen, well waiting to be seen. Waiting to learn the extent, if any, of the new damage to my eyes. I am, at minimum, having a typical eye exam, and a color vision exam, followed by a field of vision test and a scan of my optic nerves. All testing that I have not done since I originally lost my vision in 2008.
My mind immediately goes back to that fear of the unknown; the fear of not yet being diagnosed and having zero idea of what my future would even hold.
This time I am fearful but, for so many other reasons.
For fifteen years I have remained fairly stable in my disease progression and have always said, I can handle losing most abilities, but should I lose my sight I would not manage that well. And while I can still see, the fear of one day not being able to see my children clearly is crippling. And while I often write of the positive moments, and lessons learned from my MS, when it comes to this I have no wisdom, no insights and no cliche motivational quotes to preach.
I have only this…
It sucks. Even when it’s good, it sucks. Even when I’m hopeful and inspired and at my optimum performance, it sucks.
It sucks living with an unpredictable, often debilitating disease. It sucks raising a child when having this disease. It sucks navigating an able bodied world in a body that could very well become disabled at any moment.
The fear never, ever leaves. The constant reminders of how quickly anything could change are always present.
Today, in a presentation someone asked what filled my cup, and I wrote down my son; but, that answer means so much more to me. The full answer is-seeing my son, watching him smile and laugh and truly seeing the world through his eyes.
I hope I can always see his world.
These Are The Things I Have To Think About 