Thursday, February 10th
It can be a challenge when family members or friends do not understand why you or your child needs a feeding tube. However, many family members do a great job of supporting their loved one. Encourage your family to learn about tube feeding, lend their support, and share their story. It can be isolating and challenging to do this alone. Tell people about why their support matters.
This year I’d like to take a different approach to this topic, one that’s more reflective of me and my journey. I continue to love what I wrote in past years, and will weave some of those stories and thoughts here, yet I’m drawn to musing on my own shifts this time.
This how I started in past years…
“Whether it be a kind word, a hug, an offer to help or a smile… having your support means so much to us. When Henry was little, it was actions – help by picking up groceries, make dinner, ensure Shawn and I were eating and sleeping so we could take care of Henry. Listen as I cried. There was nothing anyone else could “do” to help Henry. There was nothing anyone else could “say” to help Henry. But they could help ensure we were taking care of ourselves.”
When I reread this now, I have so much compassion for this person. She was so scared, so overwhelmed, so certain that she wasn’t enough; wasn’t doing enough; couldn’t be enough regardless of how hard she tried (and cried). It was only when she reached her proverbial limit did she cry in front of anyone else. All other displays of perceived “weakness” were hidden far out of sight. It didn’t matter how kind anyone was, her inner dialogue said “if only they knew… if they really saw me they wouldn’t say those nice things”. I pushed away so many offers of connection and care, because I thought they were sign my weakness and my inherent “not good enough-ness”. I HAD to be good enough. I felt like Henry’s life, and my life by extension, meant I ALWAYS had to be fine. These mistaken beliefs started long before Henry, but boy was my experience with him really good evidence for what felt like their truth. I didn’t understand that I could be good enough AND feel overwhelmed / desperate / lost / need help. It was okay to ask for things, as long as I was “in control”. Any waiver from that [illusion] felt like I was loosing my grip on everything.
“It was the seemingly little things that matters so much. I still remember the first playgroup we went to through the Infant Development Program – the lady there seemed like an angel. For the first time in months we felt like we weren’t alone. There were other families who could relate, there were people to help. Yes… there was still something “wrong” with Henry, but suddenly our bubble got a little bigger and we weren’t so alone.”
Ah… connection. So many times I felt alone while standing in a room full of people. I did the best I could. I can say that now… and it’s been a hard fought journey to be able to say that honestly. I’m still reckoning with some of the things that happened in Henry’s early years… and I likely will be for years to come. It was sheer force of will and fierce tenacity that got us through some of those days. Now I am more able to experience the feeling of support and connection – real, honest, vulnerable, messy connection. I still struggle to show up honestly and vulnerably in my hardest times. A part of me still believes people will go running from the room in horror. But a larger, stronger part of me knows different. That it is in my hardest times that I learn and offer the most valuable of gifts. And I thank so many people for their support along my way.
“I still remember going to the first parent meeting at preschool; so scared because we had to introduce our children. I was so scared to talk about Henry’s feeding tube. Scared what other parents would think. I was sweaty, clammy and could barely talk. And it was fine. People were fine. I just about cried.”
Ha! I cried like a frickin’ baby afterwards! I’m still amazed I contained as well as I did and I’m honestly curious if I looked as much a mess as I felt!
It’s almost 12 years on now and I’m still scared about a lot of things. For all my talk of faith, the fear is still there in a lot of ways I’m sure many parents can relate to. I’m scared kids will be cruel. I’m scared he’ll get laughed at or someone will see him eating through his tube and say its gross. Scared he will get picked on or that some well meaning (or not so well meaning) adult is going to be rude. I still want to bundle him up, go back inside our bubble (ha! and to think I first wrote this line long before covid), and keep him safe. But I know that’s not practical, realistic or helpful.
My list of things that I appreciate has expanded a bit over the years…
– When my Mom comes into town and feeds both the boys dinner… it matters.
– When people serve ice cream with whipping cream on top, so Henry feels he can participate in the meal… it matters.
– when Henry “serves” people appetizers (when they want them or not!), and people recognize this is him participating in the meal… it matters.
– when a stranger at the next table is curiously kind, and stares but not rudely… it matters.
– when our sitter and Henry’s support person learn how to help him eat… it matters.
– when people make note of the empowering language we use (for example, we don’t feed Henry, we help him eat)… it matters.
– when people refrain from asking him if he’s eating… going to eat… has eaten recently… or any other such questions… it matters. Henry eats at every meal, the same as I do. If your curious about him eating by mouth specifically, then ask me privately. But seriously, don’t ask him. It’s not helpful. (okay, I can feel my blood pressure going up… clearly this still triggers me).
It all matters. The kind and the not-so-kind. It shapes who we are as people, all of us.
I love that we have so many people around us who care. I love that I can truly feel that care now, in a way I never could before. I love that I now actually have friends that when I messy cry (like reeeeally messy cry), they cry too. Then they make me laugh. I love that, even though our experience may be different than some, we are not alone.
Hugs, Shelley
Henry's Homemade Formula 
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