Friday, June 25, 2010


On Tuesday, we were in the play area at the mall after Harlie's appointment in Norfolk.  A little girl near us asked her mom "Why does she look like that?"  I pretended to not hear the conversation.  But, I heard the mom say, "That's they way God made her." And then she said, "God made her very special." And that's when I had to choke the tears back.  Yes.  God made her very special, indeed.  It didn't help that the little girl looked so darn concerned.  Something about that got to me.

On Monday, at The Little Gym a little boy just pointed at her and said "her face."  And then he said something like "her face different."  I think his mom said something like "we all look different."

Today was the kicker.  We went to a birthday party at a movie theater (saw Toy Story 3 - more about that later).  Afterwards we went next door for the celebration.  I had to take Harlie to the restroom after the movie, so we got next door last.  I sat her in the next empty seat, next to a little boy.  He looked at her and exclaimed, "Ewww! I don't want to sit next to her!"  I think I would have lost it if it weren't for the birthday boy's mom.  Just knowing that she knew what I was feeling made me feel better.  And she said something to him and moved him away from her.

The only thing that gets me through this kind of stuff is the fact that she doesn't seem to notice.  Yet.

And sitting here writing about it I can't help but wonder why in the world I react the way I do.  I freeze.  I completely freeze.  I get so incredibly uncomfortable.  And I know believe that the parents have to be so uncomfortable, too.  It is such an awkward, hurtful situation and I just want it to stop and get away.

I get that the parents are unprepared.  Heck, I can't imagine that they see kids like Harlie often.  I went my whole life and never saw a child with a trach.  Or a child with Harlie's facial differences.  How can you prepare for seeing something you don't even know exists?  So, I get that.

What I don't get is why I am constantly caught off-guard.  And why don't I get all Mama Bear and say something?!

Like today.  Why didn't I tell that little boy (that's old enough to understand) that saying "Ewww!" about someone is very rude?  Or "you act that way toward my little girl again and I'll squash you like a bug?"

A few weeks ago, Harlie and I were in an elevator with a mom and her three kids.  The four of them just openly stared at Harlie like she was a freak show.  That elevator had to have been the slowest damn elevator in all the world.  Talk about uncomfortable!!!

I am going to have to figure out another way to handle this situation.  Saying nothing or doing nothing will not work when she figures out that people are reacting negatively to her.

And really, doing nothing isn't working for me now.  I hate the way I'm feeling right now. I want to rewind the clock and handle the situation totally different.

Even when kids are in our house - our safe haven - I'm caught off-guard by their questions and comments.  She's "weird", she's "mean."  Ugh.

So, I made a postcard with her picture on it, and some facts about why she looks the way she does and why she breathes through a trach, and how much she's been through in her life.  I thought I would get them printed and carry them with me.  So, when I overhear a child ask their parents about her I can hand them the card and tell them that it might help them answer their child's questions about her.  That will force me to address the situation, and give the parent and I a chance to talk, which will maybe make the situation not so uncomfortable.   And hopefully the parent can talk to their child more about it later.

I don't know.  I can't stop it from happening.  And I can't help that it hurts when it does.  And it is going to hurt so much worse when Harlie understands and looks at me with tears in her eyes.

How do you prepare yourself to hear hurtful things about the way your child looks?  And how do you prepare your child?  She is so joyful and so very, very loved.  And I don't want the things she hears about herself to change the way she lives her life.  Right now she smiles at herself in the mirror.  I don't want that to ever end.



Beverley said...

I, too, hate that feeling ... freezing. Not really addressing the issue ... just letting it pass. Not acceptable.

Right now the biggest thing is that Leyda has a cannula and O2 tank (they are so ugly) I have begun to say that it is her medicine for breathing. But her stroke is causing spasticity in her right leg and she is precarious as she s l o w l y walks and has her arm at a funny angle. I don't want to go into a full medical history, but I know I am going to have to address it soon enough.

Looking forward to following the response that you get.

Just Diane said...

Aw, I also hope she never, ever stops loving the girl she sees in the mirror.

Janis @ Sneak Peek At Me said...

Christy, Not sure if you read my post about teaching kids about differences. If not, the comments are really worth a read. Susan left a really great comment. All I can say is ((HUGS)) I so know what you are going through.

Please Teach Your Children About Differences

Donna said...

I can completely understand where you are coming from Christy and I know how bad it hurts. I have done the handing out card thing when people stare rudely at Alex or kids make comments - and in some small way, I really get satisfaction from it. If nothing else, you're also spreading awareness. Harlie is a FIGHTER and so very LOVED, at the end of the day, that's what matters.

Christy said...

Holy cow, Janis! 49 comments?! My blog would explode if I got that many comments! I read a bunch, will have to finish later. We really need to talk one day. Hugs to you and Austin!

Tanya said...

Maybe Harlie won't notice for a long time. Meaghan is almost 10. We are at our first CCA retreat. I said 'won't it be nice to be where people don't stare at you?'. She gave me one of those preteen looks. 'People don't stare at me!'. Well they most certainly DO (although less than before her jaw reconstruction), and whisper, and sometimes ruder. She's usually a very keen observer but she doesn't see this. Maybe because she grew up with it being normal? We had a heck of a time teach her not to stare! Same wonder there.... Maybe she thinks it's normal! The out loud comments stopped as she got older. I worry most now about the most subtle effects on socialization.

I think it's a blessing that Harlie doesn't notice. Now to get a handle on how you react. We found most kids wanted info - she was born like this, no accident or illness, it doesn't hurt, she likes some of the same things, does most of the same stuff. I had to tamp down my urge to go all mean mommy bear growling and thinking dark thoughts. I got to the point where when someone was staring I would tell Meaghan to wave or say hi. Surely the child just wants to be friendly. It's what I'd have my son do! And it worked for us. We usually got a smile or wave in return. At this worst the staring stopped which was what we wanted!

Kristen said...


Ok, warning: This is going to be a long comment, I have so much to say!

First of all, that little guy in example number three should be squashed a like a bug! (Or perhaps more so his parents!) I say that while hoping an praying that Ryan will never be so insensitive! (While knowing he could be despite my best efforts!) But I can guarantee you, that if he ever is, I will personally squash him like a bug ;) Or, more importantly, teach him a valuable lesson that will *hopefully* make it so he is never so insensitive again.

With that said, as you know, it is a child's nature to be questioning and curious. So, the questions of the children in the first two examples are completely normal, and I think their parents' responses were right on target. But who cares what I think. What do you think? How did what they said make you feel? (Sorry, it's my Social Worker tendency to ask that!)

As for your lack of response, I think the tendency to "Freeze" is completely normal! No parent is ever taught how to handle such situations. We have little life experience with such a situation ourselves! I think your idea about handing out cards is a great one! I think when you hand them out, if the parent had a great response (like in example 1 or 2) you should say so! I.e.: "I appreciate the kind way in which you addressed your little one's questions. Here's a card that might help you explain it even better."

Lastly, I am going to ask you (and any other parents of kids with differences, or special medical equipment, etc) to go out on a limb and teach us other parents something. If, heaven forbid, one of our children ever says something as insenstive as the little guy in example number three, how would you ideally like us, as his parent to handle it?

I hope my reaction would be to look my little guy in the eye and say, "Ryan, it is NEVER nice to say things like that to people. Now please say you're sorry to this little girl." I would then pull him aside and have a brief conversation about differences. And as his parent I would apologize to you.

But who knows, maybe you would want me to just pick his little body up and walk away as fast as possible. I'd love to know what you think!

Thanks so much for sharing so openly Christy!

B-Mama said...

Christy, my heart aches for you in handling this. Parents like me would love greater insight on how best to handle questions, so your feedback is really valuable! I love the card idea and think you should also include some similarities on it like "Harlie loves applesauce, riding her trike, and playing with baby dolls" to show kids that she is very similar despite her differences.

Susan said...

Oh boy do I ever understand, and I know you know I do. It is heartbreaking to think of how our children may feel when they start to understand. I too let it go sometimes because I'm hoping she doesn't really understand but I think now is the time to start taking new approaches to talking with strangers in public because I don't want to assume she doesn't understand and be wrong one day.

I think many times we can be stunned and think of the appropriate responses later. I found that thinking about it before hand and having a standard set of responses helps. Like to the brat who didn't want to sit next to Harlie you might say "Saying things like that is very hurtful!" It's the truth and he needs to know it so he can learn to be a nicer person. If the parent hears you they can hardly disagree that what he said was hurtful. I'm not saying this is what you "should have said" but just showing how having a strategy can help so that afterward you aren't left thinking "I should have said x,y,z."

For some reason people seem to feel free to ask me questions. Maybe because when we are one-on-one I'm generally fairly confident and friendly (in regard to Ainsley's differences). But a long time ago I did print out business card sized blog cards to hand out. They simply say "I AM AINSLEY" and have a picture of her giant smile and her blog address. In those situations I tell them that I'd prefer not to talk about it in front of her, or it's too complicated to get into but the info's there if they really want to know. At times when I feel like talking, I do.

But as for kids staring and making comments, that's really hard. I do understand most of the time it's natural curiousity. But it still hurts. When it's one on one it's usually okay. It's more likely to be a problem for me when we are in a crowd and you can't really have (and don't want to) have a personal exhange with each starer. I really wish parents paid more attention to their children and when they see them staring would smile and remind them "It's not polite to stare." There are so many types of difference in the world that all children/people need to learn this. Even though I think my other kids get it because of Ainsley I still talk to them about it in regard to others.

People who simply say "Kids will stare." infuriate me! Kids will pick their noses, take each others toys, hit each other and do all kinds of other things that we do not tolerate. It's one of the most basic social rules and I don't really understand why so many people seem to have forgotten it.

May they always look in the mirror and smile!

Grandma said...

I just don't know what to say to you...Harlie is such a special little girl, lovely and kind and sweet. I hope she continues to grow with that wonderful spirit with her...She will always know that she is loved, she will always have support from her family and friends, she will always have God watching over her and protecting her...yes, she is going to face many challenges along her way but God will be there to guide her and He is guiding you to make those decisions right now for her. If handing out cards is the way to go..then do that. If telling an unkind person that was not nice and you don't appreciate it..then do that..I think I would look at that person or child and say "she was made special by God and I love her the way she is". My prayers are always with you and Harlie and I hope the answers will come your way.

Janis @ Sneak Peek At Me said...

LOL, trust me my blog almost DID explode. It is my most popular post EVER! And I am so glad because most of those comments are from parents who do not have "different" kids. I'm so glad that the discussion has been started.