I thought about titling this article “things not to day to a parent of a child with a feeding tube”, but I honestly don’t really know any other parents of children with a tube to compare notes with. So, this is an article about what not to say to ME.

Recently I attended a “Mommy” workout class at a local community center. It worked well for me.  I could bring Lyra and get a great work out (omg I am so sore right now). However, my child does spawn many questions and comments.  First off, everyone notices her because she constantly talks….. The apple did not fall far…. Upon looking at the source of all that noise, people see a brilliant smile (hers, not mine) and a big piece of heart shaped tape holding a tube in her nose. I know that people mean well, they really do, but that doesn’t mean that their comments are any less hurtful/rude. Not all of the following were said to me during this class, but they have all be said to me at some point:

1. “Why don’t you just wait until she is hungry?” – This one makes me the most angry, so I am putting it first. I have cried over my baby begging her to just eat a little bit more. I watched her deteriorate from dehydration in an ER while doctors and nurses over looked the fact that she needed an IV. Also, don’t you think the doctors would have skipped the whole feeding tube thing if it was that easy? So please, don’t tell me to “just wait until she is hungry”.
2. “Do you breastfeed?” – This is normally asked by a breastfeeding mother. As if I don’t feel guilty enough after being preached to continuously while I was pregnant about how I should only breastfeed. No, I do not breastfeed. Hello, the kid barely eats. I tried. Trust me, I tried. Breastfeeding meant Lyra screaming her head off and both of us ending up in tears. Also, since we have to carefully measure everything she takes it, I was told by multiple doctors NOT to breastfeed. I did spend countless hours her first two months of life pumping so that she could have breastmilk, but she grew better once we put her on formula. So please, get off your high horse and don’t try to guilt trip me.
3. “She is so tiny” -The comment by itself doesn’t bother me too much. It’s more the look on the their face, and their tone of voice, when they say it. It’s as though I have been totally negligent. Yes, my daughter is very small. At almost 4 months old, she is just now starting to grow out of her 0-3 month clothing. She basically didn’t grow for the first month of her life.
4. “How early was she?” – Please, don’t assume that because someones baby was in the hospital (or they are really small) they were really early. Lyra was born on her due date. She is a full term baby.
5. “Why doesn’t she eat?” – If we knew why, we might have more of a solution.
6. “She doesn’t look funny.” – Your kid does, is there something wrong with them? This comment ticks me off because it assumes that if someone doesn’t look “normal” there must be something wrong with them. Plus, there are a lot of really ugly babies out there who are totally fine. As they say, looks aren’t everything. Also, what if she did look really different? Would you say, “Oh, so that is why she looks funny”? I would hope not.

So, I do understand what people are getting at when they ask me these questions. Also, I am very open about her diagnosis and what is going on. So, here are some better ways to ask most of those questions:

1. There is no better way to ask the first question. As stated before, if it were that easy, she wouldn’t have a tube.
2. “What does she eat?” – Know, for those of you who feel superior because you were able to breastfeed for the fist five years of your kids life (I know I am exaggerating), this question is not as satisfying. However, it is much more polite. It also gets your question answered without ticking me off.
3. You can comment on her size, but try to make it sound like it’s something cute. She is is pretty darn cute, so it shouldn’t be hard.
4. “Was she a premie?” – Once again, this answers your question, but does it in a nicer way.
5. “Do they know why she doesn’t eat?” – As with #2 and #4, this is just a nicer way to state it.
6. “She is so cute!” or nothing at all – She is really stinking cute, so say that. Also, if you think she does look “funny”, or you come across another kid who does look a little different, keep that to yourself. Don’t you remember the old statement, “if you can’t say something nice, don’t say anything at all”?

Other questions that are totally fine to ask:

1. “What is the tube for?” – The tube is right there out in the open. There is no hiding it, and pretending it’s not there is just silly. I know people are curious, so just ask. Most of the time I just say something about it anyways.
2. “Will she ever eat normally?” – This is a logical question. The answer is that we don’t know, but it makes sense that you would ask.
3. “Does she take a bottle at all?”
4. “What is the prognosis?”

This is far from an exclusive list, but you get the idea. As I stated above, I am totally open about Lyra’s diagnosis. So please, ask about it. I freely tell people that she has two genetic disorders. It’s nothing to be ashamed of, and education is everything. Also, if I talk about it, maybe I will find someone with the same (or similar) diagnosis. Anyways, that is my rant. Now, enjoy the cuteness that is Lyra:

Look at me sitting like a big girl!

Hello Mr. Lion. How are you today?

Swimmer girl bath time

I have officially found my thumb