Benjamin Button

     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.    

Hermit No More

     The last few weeks I've felt like a hermit. Besides a trip to Target or the grocery store my life had basically fell into a very predictable routine. Not only was I physically doing the same things over and over, I was letting my anxieties take hold of my emotions and I stopped trusting in those that I should while doubts guided my thinking. I was in a state that I didn't belong, where I was very uncomfortable. I severely slacked off in my relationship with God. I was falling back into a pissed off relationship with Him, one where I fell away from His word. I was expecting an OnDemand God, where He would see me struggling and snap His fingers to get me out of my rut. I thought we had these guidelines in place now. The guidelines being I will continue to praise your name in the face of ALS, with God providing me with lavish  rewards along my journey to keep my faith strong. Seems reasonable right? Maybe if I were selling smoothies, shoes, or something material and I was making a deal with my boss, then yes. However, we're talking about the creator of the universe, God who sent his son to die for all of our sins. Perhaps, even with having ALS, I over stepped my bounds in expecting a God who would make deals with me.
     Our Heavenly Father doesn't work like Instagram or Snap Chat. You won't get that immediate satisfaction and response most of the time. This isn't because He's busy helping others or ignoring you, He's always there next to you to provide comfort and support.  What He's offering you at that very instant may not be what you're looking for at that second, or that day, week, or even month but what we have to remember is that we aren't the ones calling the shots. I didn't have anything to do with creating my own existence, I didn't create the fabric of our glorious Earth. I didn't pave the path that lead me crashing into the love of my life, or the path that lead me to my career, or the paths to my best friend's hearts. I also didn't have any control over the darker paths I've walked. Loved ones dying, my ALS diagnosis, anxiety fits, failures and heartbreak. You may not recognize all the incredible work God has done in your life, the love He's poured over you, the paths He's mapped out for your life, an extensive amount of work goes into YOU. God loves you. Once you recognize all you have is because of Him, you'll realize He's all you need going forward.  

 Much love goes out to Michelle for helping me pivot my focus and get back on the writing horse. Cheers readers!