As I gaze at baby pictures on Facebook or funny baby moments on Snapchat, I realized that those cute babies and I have a lot in common. We both need help using the potty, we both need help getting dressed. Babies need to avoid sharp, crunchy foods and so do I. Nurses are constantly keeping track of our weight and bowel movements. Babies ride in car seats with many seat belts, I also get strapped up to go anywhere in my wheelchair. Babies are constantly monitored to make sure they don't hurt themselves. I now can't go more than an hour by myself, which even that hour scares the shit out of Michelle. Babies wake their parents every night for milk or a poopy diaper. I wake Michelle every night for body movements or bodily itches.
The major difference in this comparison is that day by day babies rely less and less on others, striving for more and more independence. I rely more and more on others and lose abilities slowly each day, while desperately grasping for scraps of independence. There aren't thousands of ALS pinning pages on Pinterest for Michelle or I to find life hacks for managing ALS. There aren't thousands of books, workshops and podcasts that provide numerous possibilities to navigate this devastating and deteriorating disease, the few resources out there are still missing their final chapter; What to Do Now There's a Cure. No matter what angle we look at ALS we're going to find the same conclusion. You can't get rid of it, it will get worse, we need to find a cure.
That's a dismal way of starting every day. Babies wake to loving parents, breakfast and if they're lucky Yo Gabba Gabba. However, I'll be damned if I'm going to wake up to a depression, taking stock of the shit I can no longer do. I'm going to take anxiety meds when I want, pain meds when I want and eat pot whenever I got it. I'm going to communicate with friends and family as much as possible while I can with my eye-gaze. Most importantly I'm going to focus on the Grace moments that still litter my life and encourage others to find the Grace in their lives.