May 07 , 2020
If you were to look at my kids, you’d notice the oxygen tubes and Charlotte’s feeding tube — you’d realize right away that they are “different.” I am used to the tubes, so to me, they are just a part of who they are.
While the tubes are basically “invisible” to me, I know they are not invisible to other people. Most days when I see people looking at my children I think they are admiring how super cute my kids are! Then the look turns into a stare, perhaps a little gawking, and maybe a twinge of disgust.
Here’s the thing, when I see that stranger eyeballing my kids, turning around to whisper to their friends about them; or the woman in the restaurant who literally repositions her seat so she could get a better view… it pisses me off. You make me feel how truly different our lives are. You make me have to be the bigger person and smile and say hi, so that I can teach my children the right way to deal with the ignorance that they will have to deal with for the unforeseeable future.
While I sometimes get so angry that I could start yelling or flip you off, I have to remind myself that it’s not your fault. It’s human nature. You don’t know any better.
So here we go, this is how to act when you see a child with disabilities and medical needs:
If you make eye contact, smile and say hi.
Just like you would to anyone else. It really is just that simple.
The “how not to act” list is a bit longer:
1. Don’t whisper about my child.
Unless you are whispering about how smart or beautiful they are, loud enough for me (and them) to hear. Like I said above, some days I forget my kids are sick because I have to in order to survive myself. Make no mistakes, it is always right there bubbling at the surface.
Among my ignorantly blissful days, I also have days where I am acutely aware of others’ perceptions of our little unit. Don’t ruin our outing by being that person. Yes, that is all it takes some days to send this momma into a downward spiral or angry tirade.
2. Don’t come up to me, especially in front of my children, and ask what is “wrong” with them.
I feel like this doesn’t need an explanation, but yet, here we are. When you ask what is “wrong” with my kids, that makes them think there is indeed something wrong with them. This is not OK. We do our best to build our kids self-esteem, we don’t need anyone undoing that.
Yes, I realize people say things before thinking. If you are going to approach us, think to yourself, is this insulting? How would I feel if someone used those words referring to my kids?
3. Don’t approach us.
Now, this may be a little misleading and sound a little bitchy. You can approach us like you would any other random family, if the situation fits.
What I mean is, don’t approach us to talk about our kids’ medical condition. While I am a huge advocate for Children’s Interstitial Lung Disease, it is not appropriate to interrupt our day at the grocery store, museum, aquarium or where ever else we may be because you have to know why our kids have oxygen. I appreciate your interest, I really do. However, we are just trying to get through the store or enjoy our day. If we are sitting on a park bench discussing the weather or how great a local restaurant is, then by all means, ask why my kids are on oxygen. In that setting, it is not uncomfortable. We have already established a relationship and there is no subject that I am more knowledgeable on then my kids’ medical conditions.
4. Please, don’t tell me how healthy my kids look.
I know that this is coming from a good place, and it seems silly that this upsets me. To me…well, I don’t really know how to explain it. You see healthy, I see a child that couldn’t get through a sentence that morning without stopping to catch their breath. A child who vomited and then continued to play. I see a child who has been through more than most adults will ever go through. I have seen things behind closed doors in hospital rooms that I can never erase from my memory. I see a child that is so far from healthy — you see what we let you see.
5. Do not share your home remedies with me.
I know you mean well, but come on! I can assure you that I have researched and studied and thought of everything humanly possible to help my children. We have sought out some of the best doctors in the country that specialize in this disease. There is no soup recipe in the world that is going to cure my children. Yup, someone tried to give me a soup recipe.
6. Please, please, please, don’t ask if they are going to get better.
This isn’t a question that I can answer for my kids, so how can I answer it for a complete stranger. Even if I knew they would never get better, or in fact, would get worse. Would that be an OK topic to discuss in front of my child? No.
Better yet, how do you answer it gracefully, without making everyone uncomfortable? You want to hear yes, but I just can’t tell you what you want to hear.
7. Don’t pity me or my children.
Without these kids, I wouldn’t be the person I am today. I am proud of who I am.
You can feel bad for what the kids have to go through, but know that they are happy, loved and some of the strongest little beings I know.
So this about sums up how to behave when you see a child with disabilities or medical needs. It may sound a bit snarky, it’s not meant to. It is meant to educate people. I wish I had someone who pointed these things out to me, before I had to learn firsthand.
When you think about it, it applies to when you meet anyone. It doesn’t matter if that person is different, elderly or a sick child. Treat people with kindness. Think before you speak and treat people how you would like to be treated.