Friday, August 29, 2008

Dealing With Insensitive Comments, part 5 (weeklong series)

So now you're home. Hopefully you've settled into a bit of a routine. Maybe you've "graduated" from some of your original equipment. After a few months at home, many babies will be weaned off of supplemental oxygen, some will be able to have trachs removed, others will begin to feed by bottle or breast. Follow-up appointments will continue but, theoretically, things should be getting easier and more routine by now. It is also likely that your child will still bear the mark of his or her prematurity through some type of outside help. Many former micropreemies move from a naso-gastric (NG) tube to a G-tube which feeds directly into the baby's stomach. It is also common for preemies to have vision or hearing problems thus creating the need for glasses or hearing aids. Each child is different, of course, and there are many more examples I could give. These are just some of the more common ones.

The longer you're home, the more accustomed to things you become. And, it seemed to me, the longer I was home, the less frequently I would hear blatantly insensitive comments. That's a good thing... but it also means that you tend to be less prepared. My former micropreemie is now 2 1/2. By all accounts, she faired very well. She was completely off of oxygen after a month at home and began eating by bottle just over two months after her homecoming. She is extremely near-sighted (thanks in part to genetics and in part to a severe case of ROP- I'll write more about Retinopathy of Prematurity in another post sometime), and as a result, she wears glasses. She is also small for her age, tipping the scales at 25 pounds, fully dressed with shoes.

Here are some remarks that I heard long after we first arrived home:

"Do they think she's all there, you know, mentally?"

Yet again, I actually think the people who ask this are just really curious how well C. is doing. Maybe the fact that she receives some speech and occupational therapy makes them question her intellect. I'm really not sure. But, as in a couple of previous cases, the best reply to this is simply, "We have no reason not to think so." And I recommend that response even if your child has a known condition that may cause significant delays. The question is insensitive and doesn't merit going into detail.

"Why does your toddler have a bottle? Don't you know that's bad for her teeth?"

This was a very tough one for me. Because I really WANTED to get my daughter off the bottle. And she was happy to ditch it. But, the fact was, she didn't drink enough milk at a time from a cup and so the Developmental Pediatrics team insisted we go back to the bottle and stay with it until she would drink at least six ounces at a time from a cup. As a result, she was past her second birthday by the time we were finally able to get rid of the bottle for good. In response, I would simply say, "It is what her doctor recommends" and then I'd try not to get defensive.

"With everything they can do these days, you'd think they could at least fix her eyes!"

Truth? It really doesn't bother us that C. wears glasses. We consider ourselves very blessed that that is all we really deal with. And I tell people that. I also tell them this: "I honestly think the medical researchers have more important things to figure out than how to get rid of my daughter's glasses."

"Who does she think she is, leaving this little sibling at summer camp?"

This one made me laugh, because I overheard it. It wasn't actually said to my face. (As a result, I did not need to come up with a response.) You may hear things like this from time-to-time because former micropreemies tend to be on the small side. My daughter weighs the same amount as her 10-month old cousin. She weighs what my son weighed at six months! Because of this, there are plenty of 1- to 1 1/2 year olds running around who seem bigger than she is. Even though she met the age requirement to participate in the summer program, there were parents who thought we received special treatment. You can easily ignore these comments. Just have a little chuckle to yourself.

"So... you're all done having kids then, right? Since you can't carry them well?"

Ouch. I will never understand why people feel they have the right to weigh-in on so many private issues. It starts as soon as you announce your pregnancy, continues when you bring the baby home, and overlaps into private choices like the above. If you ARE all done and you feel comfortable sharing that, go ahead. If you're not sure or you DO plan to have more, I suggest saying, "That has yet to be determined" or "I don't remember saying that." Try not to defend your body and biology. I bite my lip to keep from pointing out, "I carried an eight-pounder full-term, people!!!" That information is nobody's business.

So there you have it. I wish I could tell you that the insenstive comments stop. But I'm not sure that they do. I can say that they usually diminish. You can also take comfort in the fact that all parents face insensitive comments in some shape or form at some point. The best thing we all can do is have a little consideration before we speak. Pause for a second. Run it through your head before you let it leave your lips. Life is tough enough without us making it harder on each other.

This concludes this weeklong series on insensitive comments! If you missed any of the earlier segments, you can find them here:
If you have a moment, please let me know in the comments:

  • Did you enjoy the series format or would you prefer one long post?
  • Would you rather see a series stretched out, e.g. one segment each Wednesday?
  • What kinds of topics would you like to see addressed in a series?
Thanks again for being here!


amyoutlaw said...

Just stumbled upon your blog. Thanks for the tips. I'm the aunt of a 23 week 4 day preemie. He's 6 weeks old now and still hanging in there for us!

Ryann said...

Since Addy gets her nutrition exclusively from the G-tube, we constantly hear "When will she be able to start eating?" I'd love to say "Hmmm... well, let me just shake the magic 8 ball here and see what it says!" The fact of the matter is we don't know if or when Addy will ever take food by mouth like the average (note I did not say normal) person. And that is usually what I respond with.

I do enjoy the format of your posts. I think you are doing an outstanding job with insight, sensitivity, and courage. I hope you have lots of ideas lined up because I am always anxious to see what you'll post about next.

One thing you may want to add is a "links" section to other webpages that have medical info or forums about preemies. Perhaps a "glossary" of commonly used preemie terms for those visitors who haven't been directly involved with a preemie or are just learning the ropes of being a preemie parent. I know you are trying to make this not about the preemie, but parenting the preemie, but as a parent, you want to be as informed as possible about the day to day terms and medical knowledge that you can so you can best make decisions for your preemie. I think adding the links and glossary would be helpful.

Keep up the awesome work. I continue to be amazed at your courage.

JessieLeigh said...

Amy- Welcome. Congrats on your nephew- he sounds like a tough little guy!

Ryann- Thanks for the feedback. I've thought it would be helpful to have some basic information... I'll have to get some help from my more tech-savvy hubby on that one!

Ryann said...

I have some links I could share with you when you get ready to set that portion up. I'll be sure to email them to you.

The Allens said...

Thanks for this infomration! I really appreciated the posts! I had my labor stopped at 24 weeks, so when I stumbled on your blog I was interested to read your journey. Definitely brought tears to my eyes as we were in some of the same scary moments at first.

Also, my son has an eye condition and is near sighted in one eye and far sighted in the other. Consequently, he has had glasses since he was very young. I was shocked at how many comments I would get about his glasses in the store! I had one couple accuse me of putting him in glasses for fashion purposes! Was not ready for that one! I also had several comments about how people doubted that anyone could know or be sure about whether or not he needed glasses!