This is the continuation of ‘The Thirteen Days of Arthur,’ a series of writings by Melissa Mouzin-Bennett, mom to Arthur Hancock…
As I promised, the thirteen days of Arthur are about important virtues he taught us. Today’s virtue is to always look your best. I know you’re probably thinking that is not necessarily important to living a virtuous life and if you know me at all, you’re shocked at these superficial words, but bear with me. I didn’t really understand the concept of looking nice while Arthur was alive, but Roy grasped it fully and used Arthur as a catalyst to teach me about dressing to impress. I have also noticed this to be very common around the HPE community. If you want to see the cutest, most fashionable children’s clothes, you only need to look for pictures of a kiddo with HPE, they’re all dressed as if they’re on their way back from their latest modeling gig. So I started pondering the question, why do we do it? When our special needs children need so many other things, why do we feel the need to dress them like a magazine cover?
A few years ago, before Arthur was even a sparkle in my eye, I went to a conference on poverty for work. One of the things that I learned about the psychology of poverty is that impoverished people live for the moment. When they have the money now, they spend it because they don’t know if they’ll ever get any more. They also like to wear flashy designer clothes because if you look successful, you’re more likely to become a success. In the grand scheme of things, looking good and wearing nice clothes makes you feel good about yourself and people in extreme poverty don’t have the opportunity to feel good about themselves very often. Could that be why the parents of special needs children with grave illness tend to dress their children so well? Is it because we feel that we have to live in the moment, dress our kids in that cute outfit today because we have no idea if they’ll live to wear a different outfit tomorrow? Do we feel like we simply don’t have the luxury of wasting a day at home in our pajamas? Or is it because we feel like if we feel good about ourselves and the way our kids look, we won’t feel so bad about what’s going on inside our kids’ bodies? After all, it doesn’t matter how many figures our bank balance involves, parents of terminally ill children all live with an impoverished mindset. We know that very soon we will lose our most valuable assets, our priceless children.
When Arthur was with us, he was no exception to the rule that children with HPE need to always look like runway models. Roy felt it was very important for Arthur to always look his best, and Arthur didn’t complain one bit. Arthur loved being pampered and Roy was more than happy to oblige. I liked to snuggle with Arthur in his jammies during the day when Roy was at work, but I always made it a point to start the process of cleaning Arthur up and dressing him by noon so he would be fresh and cute for when his dad got home. It was a daily ritual for Arthur and I to sit on my bed and drag out a stack of clothes. I would read whatever the outfit said aloud (have you ever noticed that baby clothes all have wonderful positive affirmations printed on them? I think the world would be a much better place if adult clothes had slogans like “cute and cuddly” or “little helper” printed on them, they would make us feel much better about ourselves). I would then put his hand on the fabric to touch it, and together we would decide what we wanted daddy to see him in when he came home. So as not to disappoint all of our hard work, Roy would come through the door and compliment Arthur on how wonderful he looked. The most fun we had pampering Arthur, however, was when we would get ready to go out as a family on Roy’s days off. Roy would whisk Arthur off to the kitchen to bathe him in the sink while giving me a chance to take a real “grown up” shower in which I could take all the time I wanted. I will always remember the way Arthur would smell of lavender baby shampoo and have a very smug look on his face when Roy would bring him back to me wrapped up in a bathrobe like a junior Hugh Hefner. Then, as a family, we would pick out his outfit and dress him, all the while telling him what a handsome little man he had become.
The last memory I have of Arthur is seeing him all dressed for the day of Christmas shopping that we enjoyed together as a family, he passed away in the car on the way home. After he had passed, Roy bathed and dressed our son one last time, Arthur was now ready to go home.