Monday, December 30, 2013

The Right Time

With her first real school year looming in the not-so-distant future, I've been thinking more and more about Amelia and her size. Specifically, the differences in physical ability between her and other typical-size kids.  When she starts school, there are going to be things that have to be addressed. She will need something under her feet at her desk--maybe even something to sit on.  Going through the lunch line is going to be hard, if not impossible, for her to do independently. Going up and down stairs while keeping up with a line of students is going to be tough. Every time I try to talk to anyone about my concerns, they're quick to shush me, to say that it'll be fine. I get it; I know people want me to think that Amelia is just another kid and that it'll all work out. And it will. But that's not what I'm asking for when I bring these thoughts up in conversation. I'm really just wanting someone to listen, to problem-solve with me.

It was with these things on my mind that a little incident occurred over winter break. I hesitate to call it an incident even, because it was not a big deal in the grand scheme of things. Just another thing for me to think about, as we edge closer to going to school. However, it did happen, and it did add to all kinds of thoughts that have just been jumbled up in my head over the last few weeks.

It was Christmas Day night (haha...I like saying that).  I had an errand to run, and I took Amelia with me. Marty simultaneously took Anderson for his third trip to see the fire station Christmas lights--the boy can't get enough. After we had completed our task, I was feeling all Christmas sentimental, so I asked Amelia if she'd like to go see a big house with lots and lots of Christmas lights. My girl prefers her lights on actual houses, so she was game. I drove her by this house, which is locally notorious for going above and beyond when it comes to holiday decorating. I haven't seen the house myself in several years, and I thought she would love it. We headed to that side of town. When we got there, lots of people were parking and getting out to look, and so of course Amelia immediately asked if she could get out, too. So, we parked and walked up the drive.

At the top of the driveway, there was a family looking at the lights, taking pictures of themselves with the decorations. We were walking up the drive past them, and the mother turned, saw Amelia and I walking, and squealed, "Oh my GOSSSSSHHHH! Look at HERRRR!"  I totally cringed; I knew exactly what she would say next. And I was right. " She is so TINY!!!!! How old is she?" When Amelia was younger, I could avoid answering the question. However, now that she hears and internalizes these comments, I can't avoid them or even (gasp) lie. So, I drew a deep breath (because again, I knew what would come when I answered--and again, I was right) and said, "Actually, she's almost five years old." Pause. And happened.

I'm not proud of this. In fact, I'm downright embarrassed that I was so unprepared and reacted so...stupidly.  The woman said, and I remember the exact moment just like it was yesterday, "Oh, does she have..." And before she could finish that sentence, I started shaking my head. Vehemently. Then she finished, "Does she have dwarfism?"  I responded with my standard "Yes, she has an unidentified form of dwarfism..."  Then the lady, a bit befuddled because of the head-shaking and my clearly agitated expression, went on to say, "Well I think that's so cool!"  Fortunately, her teenage daughters were fawning over Amelia, and Amelia loves attention from older girls, so she kind of missed the whole exchange.

I was so ashamed of shaking my head. Like I was trying to DENY that she was different or embarrassed to admit it. But that's not it at all. You all know from reading my blog that I'm more than outspoken about both of my kids and their issues--nothing about my darlings is embarrassing. I just hate that it LOOKED like I was embarrassed. But the reason behind the head-shaking is more complicated.  I didn't want this woman to ask, because Amelia doesn't know. Amelia doesn't know the word "dwarfism" yet, and she hasn't comprehended that she's significantly smaller than her peers.  See, she's gone to the same daycare/preschool since she was two.  She's grown up with the same group of kids, who are totally used to her. I think they KNOW that she's smaller but they don't question it, because she's always been there and been small. It's just never naturally come up.

Thus...the dilemma. Do I wait until someone asks her why she's so small, and then she in turn asks me? Or do I head it off at the pass, talk to her about it ahead of time so that she is prepared with the best answers?  It's hard, because I know what I would want, but she is not me. She's definitely her own independent person, and I'm not sure which is best for HER. The biggest part of me wants to sit her down and talk to her soon, answer her questions and give her words to say to those who ask, words that she is comfortable with, that make her feel good about her answer.  I think this comes from the same part of me that cringes when I see her on a playground, trying to play with kids who are most definitely her age, but who immediately disregard her because they think she's a baby. It's the same part that aches inwardly when she continuously talks about "getting big" someday.  And it's from the part of me who literally wants to cry at the thought of someone asking her why she's so little and her getting upset. I like to be prepared, and I want her to be, too.

So...thoughts?  Tell her now? Wait until she asks? What do you think?

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