Road Trip

The three of us watch the sun set over Interstate Highway 35 as we eat dinner, sitting on the tailgate of our truck. We all have chicken strips with fries and gravy.  My seven-year-old son, Colin, who  hasn't eaten anything substantial since breakfast, tears into a gigantic piece of breaded chicken and asks me to sit by him. I hoist myself up and give him a squeeze around the shoulders.

To anyone passing by, I imagine we appear to be a content family of three on a road trip--perhaps on vacation, or just using the extra hour garnered from the end of Daylight Saving Time to take a whimsical drive to the infamous Buc-ees mega gas station in New Braunfels, Texas. A gigantic, lighted, smiling beaver looms over us, the red and yellow of the logo casting an odd shade as we eat our deep-fried goodness.

They would never guess that we were missing one, a family member who was tragically torn from our fold just four days before.  It was Halloween when we had to day goodbye to the littlest, the least able, our two-year-old son, Dylan.  He had been in the hospital the better part of October--including on his birthday--struggling to breathe, continually stabilizing and then crashing, then finally showing us in the least uncertain of terms that he was dying of respiratory failure due to his Spinal Muscular Atrophy. 

That day I had gone from the hospital to home and back, as my husband and I had done for several days that month, switching between meeting Dylan's and Colin's needs.  This time, I left to go Trick-or-Treating with Colin so that this day would mean something to him other than Dylan's going to Heaven. We knew it was going to happen that night. Colin knew as well. But still, he was eager to go, and he wanted me to take him.  He dutifully and happily filled his tub with candy within the space of an hour, with me under a cloud of agony and worry that I wouldn't make it back in time. 

My husband stayed to caress and whisper to Dylan, and texted me when he became concerned about the time.  But I made it--left the one to go be with the other, one last time.  I caressed Dylan and whispered how much I loved him, and that we'd miss him, and that he was getting a new, perfect body.  After he died, they asked if I wanted to bathe him, which I did. They asked us if we knew which funeral home to send him to, which we didn't.  Our doctor and nurse practitioner joined us to comfort us.  And then, after staying forever in the room, we had to leave him that night, for the last time--the only time.  

That day, that split between the tragedy that was happening and the normalcy that we wanted to cling to, was the culmination of two years of navigating feverishly between the needs of well child and sick child, able one and never-would-be-able one.  This was the last time we had to divide and conquer, the last time we had to secure a nurse or a grandmother to care for Dylan if we wanted to take Colin somewhere, or split up to get ourselves and Colin to church, or stop reading with Colin to start Dylan's evening feed. We could just get up and go now. 

And we did.  We tried to take solace in this newfound ease of doing.  We tried to take heart that Dylan was watching us on the road from Heaven, healed. 

But the ache of his absence followed us up the highway and into the darkness of evening, and cast a shadow more disturbing than the light of the Buc-ee sign.