Fall 2012

Fall 2012
[learning to live a perfectly imperfect life]

boldly blogging and protective thoughts

Blogging boldly. It's something that many in the "blogosphere" are talking about, and a few blogs I follow have begun to blog that way. Boldly. Sharing much more than the "best" of your life. Writing about true, deep feelings, even if you may not be completely proud of them. (And maybe posting a picture of yourself without make-up every now and then.)

I will be honest. I have been selective in what I have blogged about. Now, obviously, anyone who blogs needs to be selective. I always think about my family first -- not only about our safety and security, but about our own privacy. No one needs to know everything about your life. I mean, Jeremy doesn't necessarily want me to tell you about the day he.... well, nevermind. And I think about the kids, years from now, reading my blog... I don't ever want them to feel as though I shared too much. (So, you know, the picture I have of Carter walking around naked wearing his cowboy hat -- it's hilarious and adorable, but I'll just keep that photo to myself. Okay, maybe the fact that I even told you I have picture like that was sharing too much... sorry Carter.)

Moving on.

Ever since we had Rylee, I have felt a sense of responsibility to share the good things about having a child with Down syndrome. And there are tons of good things, so sharing them hasn't been difficult by any means. However, when there are struggles, I feel hesitant to share. I guess it's because I feel as though most people will associate the struggles with the Down syndrome -- and sometimes the struggles are associated with the Down syndrome, but many times they are associated with simply having a child.

I have been thinking a lot lately about what I'd like people to take away from reading my blog, and one of the things I'd like is for people to relate. When I share a funny story about the kids, I want someone to think, "Oh geesh! How cute! That reminds me of the time MY son stuck play-dough up his nose!" (No lie... I actually have a story about that, which involves Carter crying on my lap, and me with a tweezers in my hands... but for now I'll stick to the topic at hand.) However, getting people to relate means getting them to relate to the funny times and the trying times... I want someone who may be struggling with feeling a certain way to read my blog and think, "I'm so relieved... I'm not the only one."

So here's to blogging boldly. Here's to sharing it all... well, most of it, except for the time that Jeremy.....

* * * * *

We were heading to the store for groceries. I could hear Carter in the backseat, playing with his Buzz Lightyear. I didn't catch everything he was saying, but I did hear that Buzz was "coming to the rescue." (Not sure who he was rescuing, but lucky them.)

Anyway, we have to drive by Rylee's school (where she attends Kindergarten) on the way to the store. I glanced down at the clock on my vehicle's dashboard... 9:45 am. Recess time. My curiosity got the best of me, and since Carter and Buzz were content in the backseat rescuing someone, I decided to pull into the school and take a peek at the kids (ok... Rylee) on the playground.

I pulled into a parking spot -- a spot that disguises our vehicle behind another, yet allows me to get a partial view of the playground. Surprised to see that Rylee is not on the swings, I looked around to find our little girl in a bright pink coat and cute pink crocheted hat, given to her by one of her teachers.

Bright pink is not hard to spot. Beside the school building, close to the Kindergarten/1st Grade entrance door, was a mound of snow. And, perched right on top of the mound was a bright pink little being. She had her back to me, but I could tell that she was digging in the snow with her mittened hand.

I wish I could've just thought, "Oh fun! Playing in the snow!" and driven off to resume our trip to the store. But I couldn't.

Rylee was alone. And my head began to race.

Is she alone because she wants to be? Is she enjoying her time digging in the snow by herself? (She doesn't seem to like the snow very much at home.) How long has she been digging in the snow? Is she doing this because what she really wants to do she's not able to do because she doesn't know how to ask her friends that she'd like to join them in doing what she wants to do with them? Have I taught her how to ask her friends to join them in play? (I know I've worked on this with her, but maybe I haven't spent enough time on it.) Where is the teacher on the playground? Should I ask them if she is always alone on the playground? Should I ask that an Aide come to recess with her and help her with social skills if she needs help? (But then again what child wants an adult to follow them around on the playground.) Is she....?

Seriously. All of this in a matter of seconds.

Now, Rylee has an amazing, magnetic personality. She has friends at school. Her teacher says wonderful things about the kids in her class, and often tells me who Rylee plays with or what she and her friends did on a particular day together. After school, she is dropped off by school transportation and she has several classmates who ride with her. When the door opens, laughter and friendship ooze out of the Suburban. So, really, there is no justification to my thoughts.

But I still think them.

Just then, the bell rang. Kids began racing toward their class line, laughing with their friends and stomping snow off their boots.

Rylee continued to play in the snow.

More thoughts....

Did she hear the bell? (Maybe we need to get her ears checked again.) Does she know what she needs to do? (Yes, of course she does. But then maybe she forgot.) Will the teacher on duty ask her to get in line? Will she listen? What if the teacher on duty doesn't care that Rylee's not listening? (I want the same expectations held of Rylee as are held of the other kids.) What if she doesn't remember which line she needs to get in? (Maybe I could ask that a mark be made on the cement where she needs to line up.) What if she is trying to get up out of the snow but it's difficult for her muscles? What if...?

My eyes are still fixed on the bright pink coat. Then I saw a girl, a few inches taller than Rylee, go over to her and extend her hand. Rylee reached up and took the girl's hand. With a little help, the girl pulled Rylee to her feet and ran off to one of the 1st grade lines.

My eyes got a little teary.

Rylee patted her snow-covered mittens together, and snow sprinkled the cement below her. She glanced up, her eyes peering out from under her now-crooked crocheted hat. As her classmates began their trek inside, she joined them at the end of the line. Within about 10 steps, she was inside, and the doors shut behind her.

The overwhelming feelings of protection. Of wanting to be right there, every second of the day, helping to teach her and keep her safe and happy and loved and.... wow. It was almost too much to think about.

Was I feeling these things because I am a parent? A mom? Would I feel these things if Rylee didn't have Down syndrome? Would I feel them as strongly? Will I feel this way about Carter?

The former teacher in me often has talks with the mom in me. For a second, sitting there in the parking lot, the teacher reminded the mom of a few things.

I wouldn't be doing my job if I was with her every second of the day. My job is to teach her how to be as independent as possible, and how to ask for help from others when she needs it. My job is to teach her how to handle situations that may not go as planned. My job is to give her the skills and self-confidence to interact with others; to make and keep friends. My job is to make her feel loved, and teach her to love herself.

Carter asked if we were at the store yet, and I was suddenly reminded that he was patiently waiting in the backseat for me. (Apparently Buzz was done with his rescuing for the day.)

But before I put the car in drive, I realized that my job was the same for all of our kids. Down syndrome or not, our kids need me to teach them so, at some point, they don't need me.


I know that's what my job is. But some days, the mom in me wants to tell the rational teacher in me to keep her opinions to herself... and follow Rylee to school.

(Photo courtesy of David Lauritzen.)


Monica Crumley said...

Great post, Carin. I can relate to not wanting to "put it all out there" for the same reasons you've been holding back up until now. I want to portray the positive side of having a child w/ Ds because I think our blogs get looked at by many people with a critical eye, waiting to say, "see, that's what I was talking about..." I hope I'm wrong, but something tells me I'm not. I loved your post and I,too, would have the same thoughts running through my head. I admire the fact that you stayed back, out of sight, just observing... and then realizing that Rylee's fine. She has her little protectors at school and you need to trust that they have her best interests in mind. Of course it doesn't hurt to check now and then for your peace of mind, either. BTW, don't we all have totally embarrassing photos of our kids? Hahaha. If they only knew.

tali said...

Well said Carin. And I love the photos by David L - they are great pics of the both of you!

Jane said...

OMG, I am sitting here weeping after reading your post. My name is Jane and I have been following your blog for about a month now. I too have a litte girl with Down syndrome, Lily 3 1/2, and she is my life. She attends a Nursery School program 3 mornings a week. Every day when I go and pick her up she is always just sitting alone outside. Never playing with anyone - actually digging in the snow just as you described. I asked her the one day, why she didn't play with her friends and she said "mom". She believes that the only reason why she is outside, is to wait for me. I found this kind of cute, however, it makes me wonder. Your post was great! thank you so much for being "bold". If you would like to check out my blog, you can e-mail me at janebaker7@hotmail.com and I will give you access. Thanks for writing your blog! I enjoy it every day!

Sharon said...

Carin - Thank you for your honesty. The heartache of being a parent can be almost unbearable at times. I have felt the pain for my typical children when they've been excluded or made fun of. Have you ever watched the documentary "Praying with Lior?" Lior has Down syndrome and in the movie, there is a scene on the playground where Lior asks to play football with some of the kids and they won't let him play and tell him he "stinks at football." Heartbreaking. Then at the end of the movie, Lior goes to a new school with a class of kids that all have Ds and I felt so happy for him. I know the benefits of inclusion and how hard people have fought to give our kids the best academic opportunities - but something felt really safe and really good about him being with peers with Ds. My Brennan is only 2 years old - so I still have a year until he enters school and of course I hope that he'll be happy and be accepted - but my mind certainly wonders what to do if he's not?!?