I last saw you exactly 365 days ago. October 23, 2011 is etched in my memory, and I wonder if it always will be. It was a chilly, Minnesota fall day filled with leaves and football. Winter was looming.
I walked down to your room and found you, as I did each Sunday morning, in bed. You smiled and scratched your tummy and exclaimed, excitedly, that you were ready to get up. I cradled your arms and legs as I lifted all eighty pounds of you from your bed into your wheelchair.
I laid you on your mat in the bathroom and brought in three shirt choices from your closet. You picked the maroon Abercrombie shirt that was one of my favorites. We diligently picked out a pair of underwear. I pulled them way up and flatted the band and you checked to make sure they were well over your belly button. You drummed on your tummy with your fingers. I picked out a pair of pants but you didn’t like them so I picked another pair. I sat you up, brushed your teeth, and loaded you back into your chair. Finally, you were dressed. Step one in “a morning with Duchenne Muscular Dystrophy” was complete.
We spent most of that day at the Mall of America. You had somehow come upon yet another Best Buy gift card and it was burning a hole in your pocket. The gift card was worth $35 and it was awful difficult to find the perfect video game for that amount of money; you were of the belief that a game isn’t up to snuff if it isn’t at least $39.99. After three hours, you decided you could not leave without the LEGO Pirates of the Caribbean for Xbox. I covered the extra and berated myself once again for failing to teach you money management skills.
The Packers played in Minnesota that day. The Vikings lost and you were pretty upset about it. So mad, in fact, that you ranted and raved to at least fifty people in the mall which left me embarrassed and frustrated. I decided it was time to go home and a battle ensued over control of your wheelchair. You nearly ran me over in your four hundred pound chair. I was aggravated.
We rode home, silently at first, then humming Journey songs on your new favorite radio station. (I was so happy when you decided to like Classic Rock.) You apologized sweetly for your outburst and my heart swelled. I was never able to stay mad at you for long. You wanted to go to the Spirit Store to add to your impressive Halloween loot but I said no. How I wish I had said yes.
That night, we repeated the morning routine in reverse as we got you ready for bed. I brushed your teeth, put on your pajamas, and we struggled through your testosterone shot. Even a simple wrinkle in your pants drove you mad so shots were a big deal and you were a trooper. I flipped on your CPAP ventilator. I lifted you in to bed and after fifteen minutes of adjusting your body so you were in the perfect position, we said goodnight. A few minutes after I left your room, I could hear you still yelling to me and I walked back into your room for a few more rounds of the goodnight game. The next evening, October 24th, 2011, you passed away.
It is surprising sometimes how much I miss you. Tears come at the most unforeseen times. Sometimes they are angry tears; little boys absolutely should not have to spend years of their childhood in hospitals and wheelchairs. They certainly shouldn’t have to die at twenty-two. Other times, they are grateful tears; you filled my life with so many things that I never knew I was missing, particularly perspective and patience.
Today, I will listen to Journey and think of every wonderful thing about you.