The other night my husband treated us to dinner out, something we don’t get to do often as a family with special needs money is often tighter than we would like. And let’s face it – it was 105 that day outside and I just was NOT in the mood to stand over a hot stove, oven or grill. The heat was unbearable! So I was grateful for a night out with my family, totally stress free. Well we got a later start than we anticipated so we ended up getting to the restaurant around 9pm. I took Superman’s meds and also his food. Feeding Superman in public has never been a point of contention for me. NG tube, G-tube, bottle, breast. I have never worried about how he was eating and never worried about who cared. Typically I am too busy trying to get him to eat or set up his meal time to even notice if people are looking.
Well, right now we have an NG tube, and while I hate that he has it because we have made such strides with oral feeding, sometimes he just needs a break medically for one reason or another, and this time it is congestion. The allergies are out of control and he is so congested he can barely breathe much less suck, swallow, breathe at the same time. Let’s face it – it makes giving him meds MUCH easier. No spitting it out – worrying if he swallowed all of the Topamax sprinkles. It does have its upsides. Silver lining, people, silver lining.
As soon as we took our seats, I started pulling out his meds. It’s a rare occasion that I can get his dinner and meds down before our food comes so I was actually looking forward to the slow pace of a restaurant on a Friday night and the fact that all of it should be done by the time our food comes. We would all get to eat together, at the same time, and HOT! Any mom can usually relate to the fact of utter and pure excitement at eating HOT FOOD, am I right?
The waitress came and took our drink orders and when she returned with the drink order, she mentioned that she thought we were lucky to have such an easy way to give him his meds. I was taken aback at first until she explained she has a child, who is now grown, who lives with Epilepsy so he had to take multiple medications over his lifetime and it wasn’t always easy. I thought it was a very kind statement and it was nice to have someone appreciate a bit of what we go through with our special needs child.
After meds, I switched to his formula. If you have never seen an NG tube, it is the tube down his nose into his stomach and food is syringed in through the port at the nose and passed into the stomach. Easy peasy, right? Yup. However, it can be a long process if you are gravity feeding, which means you hold the syringe up and allow gravity to push the food through the tube. That is what we try to do most of the time so that he can fill up as naturally as possible and not be ‘forced’ to eat. Sometimes its necessary to push it through, but we really try to gravity feed as much as possible.
I understand this is not typical, and its strange. and weird, and for some disturbing. And that’s ok. I understand that people stare. They can’t help it. It’s different and people are curious by nature. Honestly, I am usually too busy to even notice. However, my family isn’t. My husband witnessed a couple at the table near us leaning over making disgusting faces and whispering and pointing (not as discreetly as I think they thought they were). I understand that people have their own opinions about what others should or should not be doing. Hence the whole breastfeeding in public thing. But my son needs to eat, needs a certain amount of fluids to live. Needs his medications to stay alive. Life or death, I don’t really care what people think.
However, if my husband saw what transpired with the people at the table close by, then I KNOW my daughter noticed. Diva is FIVE. By definition she is curious, nosey and VERY astute for her age. And having a brother like hers makes her wise beyond her years. She witnessed someone looking disgusted and pointing at her brother whispering like he was doing something wrong. To her this is life. This is his life, but this is her life, too. She loves him unconditionally and witnessed someone humiliating him.
Here is the flip side to that. Right now my son is oblivious to the rest of the world unless you make direct contact with him.
But what if he wasn’t? How would actions like that make him feel?
Like he was wrong? As if he were disgusting?
I have heard stories from other moms with tubes of all kinds, feeding in public and the stories are typically the same. Dirty looks, comments, I believe someone was even asked to leave. And honestly its not fair. We didn’t ask for this, our children didn’t ask for this. They live with these conditions that require tubes, and quite frankly they do it heroicly. (Spell check is telling me that isn’t a word but I will be using it anyway)
So Special needs moms – stand proud for our little heroes, and ignore the dirty looks as best you can or kill em with kindness – a smile never hurt but it could change their whole outlook!
And those of you who read this and you don’t have tubies, please, instead of whispering or drawing attention, give the parents a nod and a smile, it might just make their day. And if you have questions ASK! Most parents don’t mind telling you why and what is going on and they much prefer that to looks that make their children feel uncomfortable.
Can you imagine people pointing and making snide remarks because you have blonde hair, or blue eyes or two arms and two legs? Something you have no control over?