This is the continuation of ‘The Thirteen Days of Arthur,’ a series of writings by Melissa Mouzin-Bennett, mom to Arthur Hancock.
What in the world would possess the father of a one week old terminally ill baby with a bilateral cleft and severe feeding problems to place a curly fry in said child’s fist? I can only come up with one possible explanation…he wanted to live in the moment because it may never happen again.
Here’s the setup: Marena needed some dressy clothes to wear to a band concert, have our family pictures taken in, and it was understood although never said out loud that she would need something appropriate to wear to a funeral. On Roy’s day off, Marena and I decided to take off, just the two of us, and shop for some clothes. Roy and Arthur were left home alone to fend for themselves. I figured everything would be fine, we wouldn’t be gone for that long and there was plenty of breast milk in the fridge. It would give the boys some man time together as well as let me focus some one on one time on my daughter who had been an only child for the past 12 years. We probably did take longer than we thought, after we found some clothes, we also decided to grab a few groceries. Roy called while we were in line at the grocery store and asked if I could just pick up some fast food on the way home because he didn’t want to take any alone time away from Arthur to cook anything. The closest and most convenient drive through was Arby’s, I picked up some sandwiches and curly fries for us all. When I got home, I sent Marena to her room to put her new clothes on hangers and I handed the Arby’s bag to Roy to set the food out on the dining table. Meanwhile, I was putting away groceries. When I finally walked around the corner into the dining room, I saw Roy eating a curly fry and Arthur was in his other arm squeezing a curly fry of his own in his tiny little fist. When Arthur spotted me, he raised his fry in the air and started swinging it like a cowboy getting ready to rope a calf. I was absolutely horrified. I snatched the limp fry out of Arthur’s fist and pried his little fingers apart to remove the rest of the greasy potato from his hand. I started to admonish Roy for his lapse in judgment when it hit me that he actually showed very wise judgment. Roy gave Arthur a curly fry to swing around that night because he didn’t know if he would ever have Arthur and a curly fry in the same room ever again. Now that I think about it, Roy’s argument that Arthur would have never been able to get the fry into his mouth was valid. Arthur’s motor skills were rapidly declining and he absolutely would not have had the coordination to stuff that fry in his face. Roy just wanted Arthur to experience everything that the rest of us were experiencing.
It was really a luxury to have an infant who we knew we had limited time with. Arthur got to go everywhere, not sure if during the cold, flu, and RSV season we would have taken him out and about so much had we not set out to fill his short life with high quality experiences. Arthur got to go to two of his sisters’ musical performances in crowded school auditoriums. He got to Christmas shop at the mall. He got to go to some of our favorite restaurants and experience the strong flavors that made it to my breastmilk. He was held and touched by family, friends, and strangers. He got to snuggle with the kitties and went outside once to touch the dog (neither of them seemed too impressed, so we didn’t try that one again). Most importantly, Arthur got to hold a curly fry. Four hours after I successfully removed the curly fry from his clutches, Arthur had a seizure, then another, then another. Arthur’s seizures became stronger and progressively worse throughout the night, he hadn’t been on any seizure medication until that point. By the time his hospice nurse arrived at the house with his prescription, I had been up with him all night and he was purple. I was sure I was losing him, but after his first dose of phenylbarb, the seizures ceased. The evening that Arthur grasped his first curly fry preceded the night that Arthur’s seizures reduced his motor skills significantly. That curly fry was the last thing I ever had to pry out of his hand, because by the following morning, he had lost his ability to grasp things.