As I wait for the next step in my son’s feeding program to begin, I find myself in the middle of a bright room filled with a diverse group of people; doctors eating quickly, parents chasing kids, children running from parents, workers folding boxes and others preparing coffee or tea. The machine is whirling and the smell of food and coffee is all around. It’s a moment to people watch and it’s also a moment that should be fairly easy, after all we’re just waiting here for our next session, but I’ve challenged myself to write more honestly and so that’s just what I’m doing today.
I’m writing this with little intention of publishing, so if you’re reading this, I was real brave.
The truth is, this program is meant for my son Carter to learn to eat more foods. It’s not that he can’t eat. He can chew, swallow and decide what he wants to eat. But what he really needs to learn is tolerance. Can he tolerate more than what he’s currently choosing to eat and how far can he truly go? Most of us can tolerate almost any food of our choosing, of course we don’t prefer all foods, but for the most part we are willing to try. This is where we need to do some work. Carter prefers about 5-6 different foods (total) and as I’m sure you know this is not ideal for optimal nutrition.
As I sit here, I realize that I too need to do some work. I know that I will learn from this program, just like Carter will. I know that my approach to this eating change needs to be calm, confident, and positive. So that’s what I’m working on here, as I write. Writing calms me. It reminds me of what I’m capable of. It helps me gain the confidence and strength I need to be his support system.
I don’t feel like I struggle with this most days, but today we are focused on something we’ve looked over for several years. A challenge I thought was permanent until now. The thought of even asking Carter to eat something other than what he prefers is daunting to me. He cries. He kindly yells, ‘No, I’m using my manners!’ This makes all those ‘feelings’ come out. That feeling when I’m asking him to do something he doesn’t want to do. He’s charming and excels at convincing most people of just about anything 99% percent of his life. So when he asks me, ‘Just, just, just give me some yogurt and my banana,’ that truly is just what I want to do. But we’ve been doing this too long. Standing still. Pretending it’s okay when it’s not. Eating the same thing day-in and day-out, does not provide him with a well-balanced diet, even if it sounds ‘bananas’ to him.
He’s my heart. My pal. We’ve been on this Williams Syndrome extraordinary gifts and unique challenges route for over 10 years now. From understanding it, accepting it and halfway through raising this remarkable kid, there are times you want to feel ‘done’ with certain parts. Like the feeding therapy he participated in from 2-6 years of age that honestly did not work, that’s behind us now. I was glad that was behind us. Who wouldn’t be? It was stressful. Intrusive conversations that (for most families) are kept within the 4 walls of your home. This is a privilege most parents are afforded. These conversations, at times can hone in on my own parental identity. But, that’s when I remember this isn’t about me. It’s about my little boy and his need to develop his own best self as we together create our own best life.
So as we go down this journey, I will write and if you choose to follow along, I hope you too learn something along the way, even if it’s just a little awareness about the unique life challenges of others.
Tomorrow: Treatment Begins (Read about this here.)