I wrote a post by the same name – so long ago now, it seems – when we were first introduced to g-tubes and buttons, syringes and pumps, bolus feeding and commercial formula. Somehow Henry “eating” was no longer in the picture. It was my attempt to claw my way back into his life. To reclaim my role as mom, in a world that seemed completely foreign. Now sadly, the same kinds of thoughts are swirling through my mind… but for a very different reason.
It is actually a very exciting time around our home… Henry will be starting preschool this fall. I haven’t wrote about it yet, as I wanted to get comfortable with the idea myself first, but there will be lots more to come.
But with all this excitement comes a few challenges, and it is one of these that has ruffled my feathers a bit. You see, while at preschool Henry will participate at snack time both by exploring the same foods the other kids are eating, and by eating a small snack through his tube. The preschool teachers will learn how to feeding him… something that is both exciting and scary for me. To be able to do this Nursing Support Services – part of the public health service – is involved with the training, writing of a “care plan” and follow up inspections to ensure that Henry is cared for safely. It’s a wonderful service designed to make sure schools and day cares are as inclusive as possible. And I am very thankful for it.
However, it was part of this care plan… one little step… that has my mind racing…
“put on gloves”.
It’s somewhere around step #10, after washing hands, warming up Henry’s food, and filling the syringe with water… but before putting on his extension tube.
“put on gloves”.
There is nothing that screams “NOT NORMAL”… “DIFFERENT”… “HAZARDOUS”… than the need to put on latex rubber gloves. We are used to gloves in the hospital – everyone wears them. Along with masks, gowns and sometimes face shields… it is the usual hospital uniform.
But do you need to wear rubber gloves to feed your child? For most of us… the answer is no.
I get that eating through a food button isn’t exactly “normal” for most people, whatever “normal” may be. I get that. I’m not hoping for “normal”, but I am hoping for “normalization”… that lovely feeling that being different is just fine. And all my interactions with the preschool teachers so far have left me with nothing but confidence. They talked about putting a food button on one of the dolls in the playhouse…using circular band aides to give all the kids food buttons… having all the kids lick their fishy crackers before eating them… or put teeth marks in their banana. All things that make Henry’s food button a “normal” part of the preschool program.
So when I read those three little words… “put on gloves”… my dreams shattered. Melodramatic perhaps… but that’s me.
The problem is, when I asked about the need for gloves, I was told a perfectly logical response. Anytime a care giver may come in contact with bodily fluids they are trained to wear gloves. When using a food button, it is common that a small amount of gastric fluid, or stomach juice, leaks out. It’s not a lot, but it does leak. For us, that’s just a part of life. But I get that someone else may not want my kid’s stomach juices on her hands. I get that.
And that’s my problem… I get it. I don’t like it. But I get it.
When I asked if they “had” to wear gloves, I was told that it has to be their choice. Some caregivers choose not to, but they cannot be pressured. So basically… I can’t grovel, beg, plead or in any way make them feel guilty. No problem.
But what do I do if they choose to wear gloves? I really do not want Henry to eat with someone wearing latex rubber gloves. That is not “normal”. My first instinct is to say I “will not” have Henry eating with someone who wears gloves. But so far I haven’t come up with any better options.
I want him to eat. I want him to sit at the snack tables with all the other boys and girls. I want him to explore foods with his mouth. And I want him to eat through his tube. And I want it all to be okay. And I’m sure in the end it will be. But right now… my mind is racing and I’m just not sure how to turn it off.
So… I spill out my thoughts in hopes that just writing them down makes things better. So often it does. And I’m crossing my fingers that this time it does again.