Friday, July 6, 2012

The Question

"Awwww... what a cute baby!"

"How old is she?"

I freeze.

Far longer than what is deemed socially acceptable to a seemingly "new" mother.

I consider my options..

Do I answer.....
Truthfully? - "Almost 18 months." Knowing the awkward silence and stares that will commence if I choose this road.
Truthfully with lots of added excuses? - "Almost 18 months, but she's had a lot of health problems."
Close to truthfully? - "17 months." (What?? She's not technically 18 months yet. And sometimes that extra month makes all the difference..)
Flat out lie? - "9 months." Just so we can all smile and move on with our day without addressing any of her "delays."

As many mothers of small children do, I get asked this question a lot while out in public. Most times I mumble her age, smile politely and agree that yes, she is indeed petite, and skedattle on out of there as fast as I can. As much as I want to be open and honest about everything, sometimes I just don't feel like talking about it to complete strangers. Sometimes I just want to finish my grocery shopping without thinking about my daughter being "different" or "delayed." Sometimes I just want people to mind their own business.

But for some reason today was different.

I was just beginning to check out at the store and the lady smiled and asked the loaded question,

"How old is she?" 

I paused, then slowly stammered the truth. "Uhhh... 18.. months," I cautiously replied.

Lady #1: "Oh wow.. she's so little! She MUST have been a preemie."

Lady #2: "Yeah.. how big was she when she was born?"

Me: "Well.... She was 6 lbs 4 oz."

Lady #1: "Oh.... Well...."

Lady #2: "That's.. kinda.. little....."

*awkward silence

And then for some reason I jumped in with

"She has a rare genetic condition called Cornelia De Lange Syndrome."

Lady #1: "What? What's it called?"

Me: "Cornelia. De Lange. Syndrome. It affects her growth and development."

Lady #2: "Ohhhh... Is she walking yet?"

Me: "No." (trying to grab my bags and ease towards the door)

Lady #1: "Oh..."

Lady #2: "Well, you'll have your baby for a long time then, won't you."

Me: "Yup, I sure will." Smiling and finally oh so close to getting out of there.

Then, Lady #2 again: "How old are your boys?" Probably curious if they're actually freak-show teenagers walking around in preschooler bodies.

"Umm.. They're 4 and 6."

"Oh."

And FINALLY exit the store. Whew! I did it.

I don't know why today of all days I decided to open up in public about Ella. Maybe it was because the lady was nowhere near done checking out my items and I knew it would be an agonizing 3 minutes of silence if I didn't explain her age and size. Maybe it was because there was 2 of them and I thought they might gang up and corner me, calling CPS to report me for neglect and malnourishment (although Ella's quadruple-thighs would probably support my case a little). Maybe it was because Ella's getting older so her delays are becoming more obvious to myself and others. Maybe it was because my boys were with me and I wanted to show them that it's always the right thing to tell the truth. Maybe because I wanted to teach them that Ella's condition is not something to hide behind or be embarrassed about talking about. Maybe it's because I'm finally realizing that this is a part of our life now, and it's not something to be ashamed of. Maybe it's because I'm seeing that while I love all our kids equally, perhaps one of the things I love MOST about Ella is her uniqueness and rare beauty and the ways she has helped me grow as a person.

Whatever it was, and however awkward it was I'm glad I took that first step. (And I'm glad I got out of that store with custody of my kids in tact.) Ella doesn't have many of the more obvious features that can go along with CdLS such as limb malformations for example, that distinguish her as "different." I don't get odd looks or stares from people, so it's easy to pretend that everything is "normal." I really don't have much experience explaining her syndrome to strangers.

Sometimes I wonder why I should have to?

When people ask how old Nolan is I don't say, "He's six, but he's only in the 10th percentile for height."

When an old acquaintance ask how Charlie is I don't say, "He's four, but he still doesn't stay dry at night."

When the lady at the checkout counter asks how I'm doing I don't say, "Well, I'm having a hard time losing the last 10 (or 20) pounds of baby weight, I haven't showered in 3 days, I'm already anxious about school starting again soon, and sometimes I struggle with being content..."

No, I don't feel the need to explain the rest of our lives away to complete strangers. So why should I need to explain Ella away?

Why do I have to air out all her dirty laundry for the world to see while I can easily conceal the rest of ours? (Except on my blog.....)

Sometimes it doesn't seem fair. 

BUT.. I am learning that informing people about her condition, making people aware that everyone is made different, can actually make the world a better place for her to live and grow up in. If people can see how happy and sweet and gosh-darn adorable she is, maybe they will start to see all differently-abled people in a new light. To see first hand that yes, my daughter is facing developmental delays and may never lead a "normal" life in society's eyes like many of you do, yet she faces all the same needs and fears and joys as we "normal" people do.

She craves attention and praise just like any other typical kid. When she doesn't feel well, she needs to cuddle and be held. She loves to be clapped for, and when we're in an auditorium she truly believes everyone is finally realizing her awesomeness and applauding her. She can be naughty, throwing her lunch on the floor when she doesn't want to eat or throwing a fit when someone takes a toy away from her. She really is more "alike" than "different."

If I can lessen some of the 'fear of the unknown' from the world that I know I faced when Ella was diagnosed.. If I can enlighten someone's "knowledge" with a real experience.. If I can challenge society's view of "beauty".. If I can step out of my comfort zone and show the world that "different" kids are really not so different after all.. Maybe just maybe, my Ella-girl and so many others can grow up in a kinder, more accepting world.

One grocery checkout lady at a time...

22 comments:

  1. You have a way with words. As usual, very nice.

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  2. Beautiful post Maria! I have a similar inner conflict with myself when people ask if I have kids, then ask how long I have been married, and then say something about it being about time for kids...Do I explain to complete strangers, or smile politely? You are such a brave momma, and yes you are making the world a better place for Ella and ALL kids to grow up in. We still need to get together soon!

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    1. Oh I'm sure that's hard too Jess.... I've felt bad a few times when I've said something to someone along those lines, then found out they had been unsuccessfully trying to get pregnant and felt SO bad.. I've started to really try not to even ask, just in case... and YES we do need to get together!

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  3. Great post! I can't imagine what it's like for you but I think you handled it perfectly. As long as you are all happy then who cares what everyone else thinks, right?

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    1. thanks. It's just hard since most people aren't asking because they think something is "wrong." so I feel like by bringing it up, I'm just blindsiding them with information they didn't want to hear in the first place! I don't mind talking about it.. it's just hard to know what to say, when and who wants to hear it..

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  4. Beautiful. It is a struggle. People look at me odd when I proudly proclaim my daughter weighs 12 lbs and she 7 months old. At this point they are usually polite and ask if me what she weighted at birth (7 lbs 11 oz) assuming she was a preemie too. But I celebrate every little ounce as the accomplishment it is. They usually just smile and go on, probably thinking a i"m a little weird. That's okay, I probably am. :-). Celebrate your daughter, she's beautiful. I'm thankful you share her with us.

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    1. thank you! some people just don't understand how much those ounces mean!! aren't we lucky to be able to celebrate the small joys?? :)

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  5. Beautiful, Maria! Sweet Ella is so lucky to have such a wonderful and thoughtful mommy. I think it's so wonderful that you are so brave to educate people on her condition. I also think its unbelievable how rude and nosy people are. Doing your part to teach the world acceptance is such a wonderful approach, but I also think it depends on the person asking, it is is perfectly acceptable for you to smile cheerfully and say, "yep, she's my tiny angel" and leave it at that. Some people are just so nosy and all that matters is that she's your perfect girl. You are so amazing with words. I love being blog friends!

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    1. Oh I know.. it's such a balancing act, trying to figure out who would be content with a nice smile and who really wants to hear more information. You really have to be in sync with their facial expressions!! And thanks so much for your kind words. :)

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  6. Beautifully written and I wish I could convey how much I admire you and JJ and the effortless way you seem to handle everything (see, on the outside no one would know that you are internalizing such stress...parenting, you're doing it right!). Love you all as part of my extended family even though technically, I can't figure out an appropriate title...would adopted great aunt be OK? Keep writing; I spent a couple of days catching up on all of your blog posts and I couldn't wait to read the next chapter. You are a talented writer - I get pulled into your stories and lose myself in them; I'm sure there's a book in here, a VERY good and compelling book. Hugs to all of you but if the boys are as muddy as some of the pictures, a long distance hug is acceptable! And kisses for Miss Ella - even with M&M and cheese puff cheeks!

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    1. Thank you so much!! Your kind words really mean a lot to me and keep me going on days I don't know if I can... I appreciate it so much! and I think adopted great aunt would be a good title. :)

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  7. Maria,
    Please keep blogging. I was so moved reading your latest post... You are such a gifted writer, such a WONDERFUL mom and such an inspiration. Keep up the great work!

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    1. THANK YOU Sarah!! That really means so much to me. :)

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  8. What a beautiful post--and what a beautiful tribute to your sweet Ella! You are an inspiration to all--especially to your children!
    JATM

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    1. Thank you so much! Your comments mean so much to me.

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  9. You have a beautiful family! My daughter is petite and we always get asked that question. It took her two months to get back to her birth weight after she was born. She eats like a pig but is always in the 2 - 5 percentile. She is perfect and healthy and I giggle on the inside when people ask me because my mother in law is my toughest critic. At just over 4 months, she told John that I must be doing something wrong because Maggie should have doubled her weight by 2 months....ummmm....we just had a checkup and the doctor said she's perfect. It took me some time to realize that my MIL didn't know what she was talking about, but once I realized that, I no longer cared what people said.

    Following you from Mom Blog Monday - Mommy of One and Counting http://www.housesbyshannon.blogspot.com

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    1. Thank you! And yes.. it's hard to not care what people think sometimes, but we just have to remember that we know best for our children and love them in all their glorious unique beauty. And thanks for the visit!

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  10. This was really beautiful! Sounds like you're both very lucky to have each other.

    Following you back from Musings of an Imperfect mom.

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  11. Hi. I'm new to your blog but I'm so glad I found it. I have a 4 1/2 year old with CdLS, Hope. I've sooooooooo been where you've been with the random woman at the grocery store -- pausing between answers when people ask how old she is, contemplating lying. My standard response if someone is really curious these days is to tell folks her age and say, "She has a genetic condition that affects her growth." That usually shuts people up and we can go on our way but sometimes it doesn't and that's OK. Earlier this month, I had a woman say, "I think I saw a program on TV about it" (people sometimes think Hope has primordial dwarfism, the condition that TLC has done a bunch of shows on). I was just like, "Uh no."

    Anyhow, just know you're not alone. I think all CdLS parents struggle with this and it is what it is. Sometimes it feels harder as Hope gets older -- she's almost five and we just hit the 23 pound mark. Woo hoo!

    Thanks for sharing! Your kids are just adorable.

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    1. Hi! It's so nice to "meet" you and know that I'm not alone in these struggles! I really don't mind talking about it if people look curious.. It's just hard to know how much to say. The other day our librarian asked me how old she was and I told her. She just politely smiled and nodded and I KNOW she was probably wondering, but she didn't ask any questions or look at me funny, so I didn't say anything. It just didn't seem like I needed to. But at the same time, she SHOULD be one to know since we see her every week. So I'm still trying to figure out how I should have handled that situation better... I'm so glad you found the blog. :)

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