Community

     I turned to the dictionary for a definition for community to tie my whimsical ideas of a community together into something concrete, but only found dull and simplistic definitions. What Michelle and I experienced this weekend wasn't dull or simplistic, it was powerful, uplifting, comforting, and loving.
    Dozens of friends and family converged on our backyard to give it a total makeover. We had 400ft. Of fence that needed to come down. Flower beds overflowing with weeds, dead trees that needed to come down, numerous other jobs to be done. This was a monstrous task to take on, one that Michelle and I would never be able to handle on our own. However our community rallied behind us and uplifted our yard and our home to a level we only dreamed of. Not only did people close to us shower us with grace and love but complete strangers joined the army to make a tremendous impact. Rock Valley Fencing sent a 6 man team on a Saturday morning they normally wouldn't work to build my fence with free labor. Dudes I'd never met working their ass off for what they said was a family in their community and communities lift each other up.
     Watching fellow teachers, neighbors, family members, friends, even friends of friends and children rally behind us to make such an impact while also enjoying one another was such an incredible thing to experience. ALS not only physically attacks you but also wages war on your emotions. Worry and fear have a way of blindsiding me when I'm most vulnerable, like in the middle of the night when I have nothing to distract me. Last night I woke up in the middle of the night, only I wasn't filled with worry, I was filled with peace and love.
    Many would say I've been dealt an awful hand and should be filled with grief and resentment towards God, but after this latest example of Grace in my life I can say with certainty that my life has a purpose, support and love is plentiful and my community is far from dull and generic, it's exceptional.

Retirement

    If you were to tell me after I graduated that I'd be retiring at 29 I would have figured my lucky loto ticket hit the Powerball. I would start hooking up my family members with bank accounts to give them financial security, buy Kamm that new Camero he deserves and get a piece of land on the west side of Washington Island to build a perfect getaway.
    Unfortunately I didn't hit the Powerball. ALS came crashing into my life throwing haymakers that slowly stripped me of my independence. I started this school year with strong and capable arms, and now I can't feed myself, zip my fly, or navigate a smartphone. It's as if I have spatulas for hands.  Imagine trying to use a spatula to use your phone without lifting your arms.
    If you know me well you know I'm a stubborn son of a bitch, so as my arms became weaker and I lost small motor skills, I compensated in other ways. I taught myself to be a lefty, used dictation on my phone and ate food from a bowl like a dog. I had to compensate at work as well. Being a teacher and not being able to use your arms is tricky. I can't pass out papers, type on the keyboard, point out directions for my students, my can'ts outweigh my cans. Even with all the things I can't do I can still connect with my students and advocate for them. I can "stand" in their corner when no one else does.
    Making the decision to retire from teaching was by far the hardest call I've had to make. For the past 15 years working with kids with special needs has been my passion. I've met some of the coolest kids, made lifelong friendships, and made a significant difference in multiple school districts and kid's lives.
Most folks tear up when I tell them I won't be teaching full-time next year, but this blog exists to shed light on the Grace that surrounds us even in the worst of times.
      For starters, I can find grace in the fact that ALS can't keep me from tutoring kids, loving kids, and making kids laugh. I can find Grace in knowing that this break from teaching will allow me to advocate like hell for others living with ALS with backing from my Gronk's Grace Army. Finally, I can take the time to pour love into my relationships with the people I hold so close to my heart.

    This blog was brought to you courtesy of my amazing eye-gaze technology called a Tobii dynavox . I set up my music playlist, opened my blogging app, and typed every word without lifting a spatula.

Gronks

He is Risen

   This is the day that the Lord has made, let us rejoice and be glad in it. I've been naive to how important Easter truly is or what those words mean. Jesus experienced one of the most painful deaths imaginable and did so to save us, we who truly do not deserve it. Then he went on to perform the greatest miracle of all time in the resurrection. Conquering Death.

    Jesus' resurrection built a bridge between our sinful and torn day-to-day lives and tied us to the hope and love that God can bring in our life now and in heaven with Him. I know that these are powerful words, words that come straight from the Bible and from a pastor's mouth, and those words can be hard to relate to on a daily basis. I struggle day in and day out, I wrestle with doubt, and at times even hatred towards God for allowing me to have ALS, for taking friends too early, for my dad dying, and for the strife that has been in my life and the lives of those that I love. However, when this fear and anger takes over and this darkness falls upon me, Christ and his hope and his love find a way to push into that darkness and make me realize that even the death that may soon be upon me cannot consume me or leave me scared. My pain has a purpose. I have to take glory in my suffering because that suffering will produce perseverance; perseverance; character and character; hope. That hope that I carry with me every day erases the fear of death that I have, it lets me see and embrace the grace I have around me and it makes me confident that my Lord and Savior Jesus will be standing on the other side of death when my time comes. He will take me to paradise away from this life of pain, tears, and anxiety. He is here for us all now and forever. 

    God bless all of my readers, and I hope that you have a wonderful Easter with your family and friends. With love, Gronks

Twilight Zone

     I just left work and I'm screaming out of the parking lot in my car. Music is blaring and it's a beautiful day. I'm ready to go to the gym. Once I get to the gym I'll run a couple laps, lift some weights, and get some good stretching in before I head home. Once I'm at home I'll take a nice long shower, Michelle likes to sit in the bathroom and talk to me about our days when I take a shower so that will be nice. After that I will cook some garlic parmesan encrusted chicken with some spinach for a nice home-cooked meal. Then, we sit down to eat I'll do the dishes and maybe chase Wrigley around the backyard. Finally I'll crack an ice cold beer and cuddle up next to Michelle for some mindless television with the warmth of her hugs and the sweet smell of her hair pressed against my chest.

     Oh, wait… No I won't, I won't do any of these things, as much as I would love to, and as much as I dream about doing that every day, it doesn't happen with ALS. Rather, I will sit and wait at work until my ride can leave and can take me home because I can no longer drive. Once I get home, mind you I had to skip the gym altogether because that ain't an option with ALS, I will have to watch Michelle make dinner. Even though I would love to help her. When we are ready to eat she will have to feed me. I won't be able to help her with the dishes, and I won't be able to chase Wrigley around the backyard. I will be able to watch mindless television, but I will have to sit in my wheelchair next to the couch with an armrest in between. Michelle and I missing the embrace we once were able to have. I can't use the bathroom on my own. I can't go to bed when I want.  It all has to be with someone else's assistance! And when I'm stressed and want to blog about it I can't even use my hands anymore! There isn't any way to sugarcoat this, it just flat out fucking sucks. 

     But, I refuse to wallow in my sorrows, let ALS rip everything I love from my grip, I refuse to lose sight of the grace in my life. I still have great friends that get me to and from work. I can still take that relaxing shower, though it might be sitting down and someone else lathering me up with soap. I can still drink that ice cold beer (through a neon straw.) I can still enjoy that home-cooked meal with my wife. And though Michelle and I don't cuddle the same we have found ways around it. Let's be honest, I can't keep myself away from her. Grace is still all around me, I just have to remind myself to pause and look around and find it.

IronHorse Courage Award Speech

The night was incredible! Thanks to everyone who came out last night and supported us. I can't wait to do it again!

First and foremost I'd like to thank the Chicago chapter for their tremendous support of my family and dedication to making my life better. 

I am conflicted up here on the stage. I am very honored to receive this award but at the same time I really wish I  wasn't because then I would not have ALS. What I do wish is that my legs still worked, my arms still worked, then I could be out there on the dance floor juking with my beautiful wife. But, due to ALS that is no longer possible. Instead, I'm confined to this wheelchair, someone has to hold my speech out in front of me, and later when I got to take a piss thanks all these beers someone will have to unzip my fly and help me pee. ALS can kiss my ass.

I've been an advocate for others ever since I was a little kid. My little sister Eliza has Down syndrome and when we were younger I was the only one who could understand her. I would translate her delayed speech to my parents, friends. 

This advocacy for kids with special needs translated into a career as a special education teacher where I continue to advocate to this day for individuals with special needs. I've always fought for the underdog. You can make the case that I'm the underdog now. 

ALS robs you of your strength, your hobbies, independence, the list goes on. It's hard to face the diagnosis and keep fighting when it feels like everything is being stripped away from you. 

I've found courage in this fight against ALS in my beautiful wife Michelle. Don't let her small stature fool you, her faith in God, perseverance, and advocacy for me and others with this disease are tremendous. 

My Gronk's Grace army that gathers its forces at a moments notice for anything, whether it's a beer and an ear after a brutal day or a commanding turnout at the Walk this fall, their courage, love and dedication is infectious. 

The prayers that have showered me from thousands of people, some I know well, others I don't know at all have lifted me to keep fighting. Knowing that my pain has a purpose. A purpose I don't fully understand but can fight for. 

What I know for sure is the courage This underdog has is not self-created. Michelle's pure love for me, the overwhelming advocacy from my friends and family and the support from God have given me the courage to use this disease to make a difference. This underdog still has a lot of fight left in him. A fight that I'm going to use to keep advocating for people with ALS. ALS can't win, because I've already won.

Thank you, God bless.

Cheers Fam!

Band of Brothers

    On this snowy Valentines Day, this day of love, Chelle has her flowers, we're getting take out and enjoying a nice fire, but I'm not thinking of romance, I'm thinking about brotherly love.

    This war that I'm fighting against ALS is a grueling one. I'm in the trenches every moment of every day. In the trenches with me are some brothers that need recognition. Brendan, Kamm, Tim and Adam are decorated soldiers in this fight. 

     Brendan is my right hand man. My driver, beer orderer, bathroom attendant, the man has seen things I'm sure he wishes he hasn't but stands strong right next to me in the most embarrassing of times. 

    Kamm, a man of few words, but not when he's with me. Kamm is my trusted adviser. "Does this hat look tight?" "What beer should we get?" "Can you make the playlist for the party?" "How do I tell my family I have a terminal disease?" He always knows what to say, how to guide my actions so that I come out looking good and when I need a pick me up. He has been here from day one.

    Tim, a man of extensive knowledge, though 5 years my junior the man provides research and support constantly. In house dentist visits, up-to-date ALS research, even shoulder rubs, the guy is my medic in the trenches. He's always there for a good laugh and keeps my spirits high.

    Adam, a brick shit house, towering over me at 6'5", is my muscle. He fixes the numerous things I can't, creates accommodations on the fly and can lift and toss me anywhere I might need to go that my wheelchair won't go. Not to mention he brings an intimidation factor to my entourage.

    This band of brothers is a crew that shows up time and time again. They don't need to show up but they do anyway. I love them for that and I truly appreciate them. Cheers brothers.

Happy Birthday

   Beep, beep, beep, it's 4:58 in the morning. Time to wake up the dog, feed him and let him out. Make Kris his breakfast and remember to make the pieces of the muffin small enough that he can eat them without his hands and that his straw is bent so that he can reach it without help. You have 17 minutes before Kris needs to be up so enjoy your sanity on the exercise bike. Scroll Facebook, check Timehop and start a podcast. 

     Shake Kris awake from his coma, cross his arms and legs so you can roll him on his side. Then lay his netting behind him, roll him back onto the net and pull the auto-bed lift into place. Strap him in, all eight straps and press the lift button. Make sure not to crush his junk, he hates that. Lower him into his chair and then unhook all eight of his straps. Grab his Old Spice, lift one arm at a time and rub it in. After he changes his mind multiple times, help him put on his shirt. 

Feel for Chelle yet? We ain't even at the bathroom yet! 

     Put toothpaste on his brush, brush his teeth, he'll complain you're being too rough, then scrub his face. He might complain then too. Once he's in place, pick him up and put him on the toilet. While he's taking a number 2 go take a shower. Brush your teeth, dry your hair, start your makeup and then go help him clean up and get off the toilet. Sounds fun right? Help Kris put his pants on, making sure his fly is lined up so he can independently pee later. Put on his shoes. Continue getting ready for work, Kris will eat his breakfast. We forgot his coffee, he's an asshole without it so quickly go make it.  

     Help Kris put his coat on, give him his lunch you made last night, and start the car for him. Fill Wrigley's Kong with peanut butter before you join Kris in the car. 

     This is 5 days every week, no matter what. Michelle does this graceously, tirelessly, for me. This amazing woman saves me day in and day out. She loves me unconditionally, kisses and hugs me and looks smoking hot everyday. The Grace I see and receive from her is never ending. I love you Michelle.