"How old is she?"
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....."
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."
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...