Warning.. This post is a rant. If you don’t want to read the rant of a special needs mom, stop here.
There are certain comments I hear all the time. “There’s a monkey on his binky!” “He’s sure cute, but looks like a handful.” “But he looks so healthy!” “Are you going to tell him he’s adopted?”
But there is one comment that just rubs me the wrong way every time I hear it. People observe me running after Patrick trying to keep him from pulling his tubes and will say, “Gee, that’s a clever leash.” Youch!
I’ve had a rather nasty cold this week and Patrick’s patience for staying around the house was wearing thin. So, since we had to refill one of his medications at the hospital pharmacy anyway, I decided we’d make a quick stop at the zoo. Lots of open air and room to run. Or so I thought.
Turned out, it was a school field trip day and the zoo was packed with elementary school kids and their parent volunteers. (In what seemed to be a 3 to 1 ratio.) This dramatic change in Patrick’s zoo-going environment threw him. He no longer cared about the animals. He wanted to watch the kids and spent the entire visit weaving in and out of the crowd. I, for my part, was left then with the responsibility of keeping a very close tail on Patrick because even with 3:1 kid to adult ratio, all of the kids were running wild and the odds of one of them snagging Patrick’s tubes as they ran past was very high.
Still, Patrick was more than content to practice climbing stairs and chase strollers and otherwise mingle. Then he spotted a group sitting on the lawn to eat lunch. Better yet, some were seated on a group of rocks that he’d never before considered a place to sit down. And so, away he went to join the group. He settled himself on a rock and motioned for me to do the same.
I’d just gotten situated, practically sitting on the ground, and untangled the tubes from around Patrick’s feet when I heard it..
“That’s a very convenient leash.” One of the adult field trip volunteers was beaming at me.
Now normally, I take the “Gorilla grin” approach to well-meaning-but-ignorant statements like this. (A gorilla appears to be smiling right before it attacks. So I muster all my frustration into a friendly smile, then exit the situation as soon as occasion permits.)
However, this time, Patrick seemed intent on staying on his rock. And my brain was all foggy with cold medicine. And so I thought that perhaps this was a good moment to help teach a little sensitivity.
“It’s not a leash. These are IV’s. He needs…” But I was cut off in my reply.
“Oh, I know. I used to be a nurse,” The happy woman told me. “What I mean was that it’s a convenient way to keep him from running away.”
My foggy little brain struggled for an answer. “I’m sorry,” I said. “We just don’t see them that way.”
Well, now the woman was starting to realize that I wasn’t as pleased with her observations as she hoped I would be and she launched into what sounded like a resume, listing all of the places she had worked as a nurse, including our children’s hospital.
Her dossier was interrupted, though, when Patrick took an interest in this woman I was talking to, which she interpreted as a request for food. “Oh, you want some of my lunch?” And she dipped a cracker into her half-eaten tuna salad and reached to offer it to Patrick.
“I’m sorry, he can’t eat that.” I said, and then shuffled him quickly on his way before he spotted the peanut butter another in the group was munching on.
But in hindsight, I so wish I’d had the clear-headedness and patience to say more.
Most of the time, I can shrug off the clever-leash comments by just telling myself that the person just didn’t know what they were looking at. But this woman had made it absolutely clear that she understood clearly what Patrick’s tubes were, and likely why he needed them.
And so I wish I’d had more courage. Courage to tell her that there is nothing convenient at all about intravenous feeding tubes. They are no more a handy way to keep my toddler from running away than another child’s wheelchair might be. In fact, the task of keeping Patrick from running to the end of his tubes is a full-time job that consumes a portion of my every waking moment. You see, if I let my guard down at just the wrong moment, his line could break costing him freedom, health, and potentially his life.
There is nothing convenient about that.
There is nothing convenient about telling a 3-year-old boy that he has to stay within 10 feet of an IV pump. That he has to rely on his slow, old mommy to keep up with his imagination. That when we play at the park, he can only go where I can go and as fast as I can run. That there are places he just can’t go because the tubes can’t go there either – like slides, and pools, and any playground that you access by crawling through a tunnel. And that I had just spent my whole morning trying to keep his tubes safe.
Worse yet, there seems to be something so wrong in implying to a child that his mother might willfully choose to connect him to a feeding tube to help to keep him in check. What message does that send to him?
Patrick’s tubes are a blessing because they keep him alive. We aren’t ashamed of them. They are just a part of who he is right now. And because we love him, we love them. We respect them. We take care of them. We need them. But they are limiting. And implying that I might enjoy seeing my son limited just, well, hurts.
And so, dear, friendly, former-nurse, room-mom.. I apologize. I am sorry for being too chicken to take the time to help you see Patrick’s tubes the way that I see them. I am sorry that I didn’t take the time to patiently teach you more sensitivity so that you could help your patients to learn to be proud of who they are, no matter what limitations they may have. I’m sorry for running away.
And I hope this rant helps answer questions for anyone else out there who might need help understanding the mysterious curly tube tied to a backpack.