I left the room shortly after, and Noah didn’t visit him again until the next day, at this point Grampy was unable to talk other then respond with a nod, a moan, or perhaps a yes or no. While I spent a large part of the day and evening in with Grampy, Noah stayed in Nanny’s bedroom watching TV and taking full advantage of my distraction by loading up on pure crap food that he rarely gets at home: 4 cokes, ice cream, chips; you name it, I found the remains of this feast when I checked in on him at 10pm. The rest of my family found it a riot, counting how many trips he made back and forth from the kitchen to the bedroom with a new load of treats. No one bothered to tell me, they called it comic relief. I can’t say I would have done a damn thing about it if they’d told me what he was doing. I didn’t care. I was too consumed with Grampy. After 5 years of intense biomed, the days of gluten fog and sugar craziness were long gone, all that resulted now from this sort of feast would be a belly ache. Noah would have to suffer the consequences and hopefully learn from his mistakes.

We didn’t expect Grampy to make it through the night so Noah and I, rather than stay at my Aunt’s like the night before, stayed the long night with my cousins and our mothers, waiting and praying for grampy to be at peace.  My mom and Aunt were exhausted from the night before and slept as best they could while my cousins and I sat around the kitchen table all night, occasionally checking in on Grampy and Nanny, who slept holding her childhood sweetheart’s hand for one last night.

Noah slept in Grampy’s reclining chair from about midnight until 4:30 am, when he awoke just as I was hoping to take a short catnap. Noah suffers from sleep issues typical with ASD’s, and could not go back to sleep as tired as he was. His fan that he needs to sleep was actually put in Grampy’s room the night before to drown any noise from the rest of his house.  I tried to encourage Noah to try to listen to his fan in the other room, but all we could hear was Grampy’s heavy breathing, staggered by rhythmic, short cycles of shallow, almost non-existent breathes. This was the one moment, in those deafeningly quiet hours, where I second guessed my decision to have Noah here with me.

What if I fell asleep and Noah was the only one awake to hear Grampy’s breathing stop? That fear gripped me, so I coaxed my 90 lb boy onto my lap in a chair and together the two of us fell asleep despite the sounds of Grampy’s breathing. I woke at about 6:30am to the silence of what I thought was the end. Everyone in the house jumped up and ran to Grampy’s bedside, startling Nanny awake yet finding Grampy still alive, with a changed breathing pattern of only the slow shallow breathes.  Noah went into Nanny’s bedroom to go back to sleep. We all sat with Grampy for another hour or so, when I went to lay down for a short nap on the couch. Within a few minutes my family was calling me that grampy had died and I bolted into the room, exhausted and relieved that he could now be at peace, but devastated that I had lost my dear Grampy Jim.

Within a few minutes Noah woke up and came into Grampy’s room where we all sat around him on the bed. I told him that Grampy had died and he instinctively reached out and patted Grampy’s hand, just like he did on his other visits. He later stood in the doorway of Grampy’s room, put his hands together, bowed his head into them, and prayed like I’ve never seen. His eyes were squeezed so tight, trying to make whatever he prayed for come true. You have to understand that I have not attended church in 20 years; the only exposure he has ever gotten to prayer is the dozen or so times a year we meet with a Christian homeschool co-op that we are active in.

Perhaps he knows something I don’t. Sharing this sad experience with him is something I will hold onto forever. I am consistently amazed by how our children, no matter how impaired or able, can feel and grieve, empathize and relate….. sometimes in ways that seem so deeply spiritual, and other times in ways seemingly uncaring. We should never underestimate the beautiful hearts and souls of our children.

Photo credit Caitlin Abrams Photography.

Becky Grant Widen is an NAA board member with 13 years experience in public health non-profits, with a history in tobacco control and community health program development. She currently works a public health consultant, focused on grantwriting for local and national autism organizations. As the parent of two boys, one of whom is on the autism spectrum, Becky is committed to using her experience to benefit children with autism. In her home state of Maine, Becky has organized local autism events, testified before the state legislature to eliminate the use of mercury in vaccines, and helps guide parents just starting out on the autism journey.