Saturday, August 29, 2015


      The 2015-2016 school year has officially started. It's the start of my 7th year of teaching special education and this morning has been the first time in two weeks that I've been able to hit pause and reflect. I caught up on Internet articles I saved, and cranked up the tunes in my Beats headphones. Specifically Hillsong United because they help slow down time. They're like a Swedish massage for the brain. I'm getting off track. The start of this school year has been different than any other I've had in my career. I may have been diagnosed with ALS last summer but I hadn't accepted it yet. This school year started and there was no denying that I have ALS. In my mind I struggled with the idea that maybe I'm biting off more than I can chew? What if my arms officially crap out on me like my legs did? What if my voice goes? My ability to swallow? After all I'm living with a terminal disease, am I going to be reliable enough to support these kids?
      I read an interview that was recently posted with Tim Shaw. Tim is a former NFL player, he's 31 years old and he has ALS. Tim is an inspiration for me. He openly talks about his faith and is truly living even though he's dying. In the interview Tim said, "I believe God makes us for a purpose. Sometimes God specifically says, This is what I made you for." Tim goes on to say that he knows God didn't plan for him to have ALS, but he prepared him for the tough road ahead. Tim spends his days using his famous reputation to help the needy in Brazil, coach football and traveling the world spreading God's love and fighting for others with ALS.
      God's purpose for me showed brightly yesterday afternoon. Any doubt I had about whether or not I should be in the classroom with ALS was blown out of the water when the Gronk's Grace squad united for the biggest Ice Bucket Challenge in IL history. 480+ kids and some 25 teachers soaked themselves to support the ALS community and to rally behind me. Sometimes God shows his Grace softly and cryptically and other times his Grace kicks you in the face. This time around it was a kick in the face. With the tremendous love and support I received from my Whitman Post family I don't have time to dwell on the What If's? I will fight like hell to keep advocating for those in need and use this inspiration to share God's love and grace. My purpose is clear. 


Here's a link to the epic #ALSIceBucketChallenge from WPES:(ignore the name butchering)

Sunday, August 9, 2015


      I would hope that you've all seen an Ice Bucket Challenge by now with the 2015 campaign kicking off on August 1st. Many of you watched me dump ice over my head and then reach for a Guinness. The torch has already been passed to some of you. I know that the IBC may feel monotonous, worn out, a trend. Some may even feel like it's a money grab after you've already been incredibly gracious and have donated to one of the many ALS organizations or the Go Fund Me Account that was created for my family. I wanted to hit pause amongst all the social media noise about the Ice Bucket Challenge and explain why it's so important to me.
      I woke up this morning not because my alarm woke me up but because my left ankle was completely numb and needed to move to regain some circulation. I however can't move my leg on my own and would usually wake Michelle to do it for me but many mornings I don't wake her because she looks so pretty and has earned her rest, so I just lay there disgruntled and read the news on my phone. I can't get out of bed without her help. I can't get off my wheelchair and onto the toilet without her. There are days where I can't even wipe my own ass without her assistance. This morning I'm craving eggs and bacon for breakfast but I can't crack and stir the eggs. I can't grill the bacon because I've burned myself numerous times trying. My days of cooking are behind me (hobby #46 I can no longer do). I settle for a Clif Bar but those are in the cabinet so I have to get my portable arm reacher and awkwardly open the cabinet, knock over the Wheat Thins and graciously drop the bar into my lap. 
      Wrigley, my 8 month old pup is begging to play tug of war. He lays his toy in my lap prompting me to grab on and give a good tug. He might as well have been asking a 106 lady to do the same as I barely entertain him for 7 seconds. It's an iced coffee morning so I struggle mightily to get the ice from the fridge before I give up so that I don't fall out of my wheelchair. Yet another can't. 
      Off to church we go in the wheelchair accessible van that I can't drive but pull right into the shotgun spot and get my fix of sunflower seeds for the morning. I have to use my left hand to fill my mouth because when I use my weaker arm I get seeds everywhere. Once at church we post up in the back row, where the handicap accessible seating is, behind everyone and hope that if anyone sits in front of us they're the shorties of the congregation.
      I could continue on about the many things I struggle with on a daily basis that I had always taken for granted. Maybe I'll share in the next blog. As it goes, this is why the Ice Bucket Challenge is so important to me. My doctors and researchers we've spoken to have no answers for Michelle and I. There isn't a lot of hope out there besides staying steadfast in my faith. But with the sharing and fun there is to be had with the IBC we are building a larger and larger community support system for those who are afflicted with this terrible disease. Our Hope Tank fills when we see our friends, family and celebrities spread awareness to possibly someone who hasn't heard of ALS and that person may help provide the means to finding a cure. It might not get done in time to save me, but I'm confident the Ice Bucket Challenge will save ALS patients in the near future. 
I can find Grace in that.