A Little Sad and a Lot of Happy

Just want to start with a video that sums up my mood lately.

Yes, happy sad happy happy sad happy. Pretty much we can’t be sad long because happiness is brimming under the surface waiting to pounce! :)

As far as being sad…  Nothing major has happened. No battles or medical issues (lately). No natural disasters. Okay we did have a flood, but that happens every time it rains in San Diego. :)  And driving a VW Bug through a lake that used to be a road is not a good idea. :) But all in all we kept  Laelia’s casts dry and had fun listening to the rain.

The only sadness lately has come from thoughtless comments, both  anonymous  and in person.

Anonymous comments (usually through YouTube or occasionally through my blog) are easy enough to deal with. I just feel bad and then delete them. Done deal. But in person it’s harder. And since the holidays bring a lot more people out for shopping, and these people are generally stressed out, I’ve had to deal with some random comments from thoughtless strangers. We (Laelia and I)  heard so many negative things while going to Target for toothpaste one day that I came home in tears. Then add to that all the  recent  trips to the aquarium, the grocery store, the post office… well we heard a lot of comments.  Here are a  few of the  things people  have  said  in the last two weeks  and  my response to each.

Stranger: “What is wrong with her?”   My response: “What is wrong with that sentence?”

I’ve heard this question the most and it’s the most offensive. When making my response I try to do it  without sarcasm and while smiling. That  works way  better than my typical response of, “Nothing!! What’s wrong with your face?!” Okay just kidding. :) But asking what’s wrong with the sentence  does get  people to evaluate what they’re saying, or at least let them know that I’m holding them accountable.

Stranger: “When will she be able to run around again?” Me: “Well, casts come off on  January 7th!”

This comment is fine to ask, but just hard to answer. What I want to say is, “If God thought running around was so great, he would have made sure his favorite kid could do it!” :) A stranger’s question that involves a complicated answer (like going into your daughter’s  incurable condition)  is best avoided. I mean, doctors told me she’d never walk, but I’ve learned that maybe in a quick conversation with someone I’ll never see again,  it’s probably not the best time to bring that up. One nice lady we met at the aquarium asked Laelia, “Are you ready to run in two weeks?” And Laelia got all excited and yells, “Yeah!”    I  pulled Lali aside later  and explain how we hope she’s able to run very soon, in her own way.  And that might even be in a fast power chair! (Her response was the same: “Yeah!” Love my kid!)

Stranger: “What happened?!” Me: “Skiing or bungee jumping  accident. I don’t remember, I was  pretty high  at the time.” :-D

Nothing happened! This is a normal part of our life! I didn’t injure her! Once again this question is kind of a punch in the gut even when it’s not intended that way. I walked around Target the other day and so many people said this to me in a not-so-nice tone, or worse–asked  each other this question out loud so we could overhear  them as  they  walked past us. Or even worse!  They  said it amongst themselves followed by saying, “Poor little kid,” as they walked by,  but in a tone that carried all the judgement of the world, and directed  straight at  me.  Sometimes people assume that if your kid is in casts then you’ve hurt her. Some people are assumers (and I say that with all the force of a cuss word). Responding in a joking voice, “rock climbing” to that question always gets a more reasonable dialog going after that, and gives me a chance to explain, “There was no injury. She was born with her legs in one position so they recently fixed that surgically.”

Stranger: “May I ask what happened?” Happy me: “Of course!”

I don’t mind answering  questions! In fact we visited a church last Sunday and ended up spending a lot of time talking about arthrogryposis  and not once did someone say something offensive! It can be done! I don’t mind if people want to know about my kid (my favorite subject)–I don’t mind questions, I don’t mind other kids’ curiosity–that’s all fine. Just don’t say anything that could be interpreted, “Why is your child a mutant?” and we’ll be fine. :)

Oh and while I’m on this rant about being tactful, drivers need the same lesson. I can’t get Lali’s wheelchair down a curb; up is fine, but down is hard. I need the handicapped parking space near the little ramp. I have a placard for just that reason, but  during that same tearful Target trip mentioned above,  there was a guy parked  backwards in the  blue lined  space blocking the ramp. So after a while waiting in the rain with a shabby cover over those plaster casts we’re not suppose to get wet, I went into the store to ask the employee to  send out a page over the  loud speaker  asking  them to move. She responded, “But he’s just trying to make a return.”

The assumption being that my child just broke her leg (which was probably due to bad parenting) and now  the crazy mother (me)  feels  entitled about where  to park.

So how do I respond? Like a rock star that’s how! By choking back a sob and standing there wide-eyed. :)  Well,  I also repeated  my request in my serious voice followed by silently  pretending to take pictures of the illegally parked vehicle with my phone that can’t actually take pictures. Eventually  the guy moved. :) Yep.  That’s how the cool people do it. :)

But seriously I was completely vilified  in this situation. Not cool.  The “poor” guy just trying to make a return could have parked ten feet away in a legal spot. And it’s so dumb that stuff like this makes me  never want to  leave the house. Looks and stares and off hand comments would not bother me if they happened rarely, but it’s all the time now. The host guy at the Olive Garden open-mouth stared at her chair for so long I almost said, “Hey buddy! Eyes up here!” But I thought better of it. Bleh, there’s no help for it, people just stare. Especially  now that Laelia is bigger and expected to move around more.  I remember when  strangers would just say how cute she was. She got her first casts at three weeks of age and I could hide them under her swaddling blanket. Those were the days.

So those are my little unhappinesses. But if you haven’t yet read the below posts, I’ll just say that obviously we’ve been completely blessed and had a ton of joy this season too. Just look at that video at the top of this blog post again and tell me it doesn’t make you grin your head off. :) And we’ve been supported by so many friends that say so many positive things! In fact because of that alone our  happiness scales are completely unbalanced in a positive way.

So I will chose to be happy despite the looks and comments. Thanks for helping me do that!

4 Responses to “A Little Sad and a Lot of Happy”

  1. tam says:

    I get it. how bout this one, every single time we go to a school event the handicapped doors are LOCKED! so I have to struggle to hold a door and push a stroller through it at the same time and not get any hands or legs stuck between the two. Or in airports that dont HAVE AUTOMATIC DOORS AT ALL! and people will stand and stare while I struggle to get the stroller filled with two casted kids into a bathroom while holding the door. do you think anyone could grab a door? offer a hand? nope. is it a crime to hold a door for someone these days? and the handicapped stalls are not big enough for the stroller and to transfer the kids and the assisted care bathrooms either dont exist or are not in a convenient place(although I find Philly has a lot of them!) one bathroom we found sort of within another bathroom and it was big and plenty of room for us to move around and transfer and still have the door closed except we couldnt get in!!!! the door jam was too small!!! most the time no one says too much. but last time we came home we met a guy with spina bifida and he used a chair and knew about the surgery they had and what we had to look forward to with sophie. nice guy. sophie usually charms the socks off of people before they can notice she is casted or that her hands are different.

  2. Tracey says:

    My biggest pet peeve right now going through these surgeries, that sorta relates to this is that when we see people who are family friends or family they’ll ask my Mom “how is she doing” or “is she done with surgeries” when I am sitting RIGHT there. They know I’m not intellectually delayed and they know I’m not 12 (I get mistaken for 12 a lot) so I have no clue why they can’t “how are you doing” to me! A lot of the time the disability itself is the easy part its dealing with other people that is the hard part.

  3. Anna says:

    You hang in there, gal! A friend of mine gave me some great advice about “those” folks last year–some people just don’t have a file for “that”–”that” being kid in a wheelchair, internationally adopted kid, anything that deviates from your “Real Simple” magazine featured family. I look at people now and think of how hard their little computer must be working, churning, even, to find a file in which to place my handsome boy (I want to laughingly say, “handsome little Chinese cripple,” because that’s how he’s described by one family member!), and they just don’t have a file for that. So teach on, rock star! You are one tough cookie!

  4. Laura says:

    Sooooo in case you couldn’t tell, people are idiots. You just have to realize that it doesn’t matter what they think. And it really doesn’t! I’ve gotten my fair share of stares and of people assuming I’m not all there and talking to every single person in the vicinity EXCEPT me. Including doctors and people that should know better. People don’t get better, but you can. Don’t let it get you down. :) And rants are always good too. I love to rant every once in a while. When people get you down, just remember that your baby girl is gonna blow the socks off people when she grows up. And she’s already started blowing people’s socks off, including my own. :)

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