Wednesday, September 28, 2011

Humilty and alone-ness

I got caught lying today.

It was 10:15 this morning and Emma and I and some other customers were standing outside a store that should have opened at 10:00. An employee without a key was there making some phone calls and we had hope the store would be opening soon, so we stood around waiting for a bit.

Emma was holding my hand and walking around and making friends, as she tends to do.

A man in his 50s and a woman in her 70s were (separately) doing what I call "the question dance"

"Oh, she's so cute!" (subtext: declaring one's own kind intentions)

"How old is she?"

"Oh, she's a peanut! When did she start walking?"

"Does she talk?"

Given the situation, I was feeling just fine about answering questions, particularly since we weren't going anywhere anytime soon, so I decided to end the awkward "circling around the issue" by just coming out and saying that Emma has Cornelia de Lange Syndrome.

The older woman had been asking more questions than the man, so when she asked, "What's that?" I decided to go with my shortest and most easily accessible answer:

"Oh, it's just like Down Syndrome."

She, like many women her demographic, responded with a not-unkind tsk and sigh and told me that Emma was adorable.

Now, for some reason when I find myself at this point of this all-too-familiar conversation, I find myself needing to ... I don't know ... comfort people. Like, I need to make sure to end the conversation on a happy note or something to make them feel better about the encounter so that I will be a good ambassador to the special needs community ... or something.

So I told her about how Emma really is doing great, much better than the doctors predicted, and about how we weren't sure she'd even survive and, well, now look at her! I usually say something about how she's my "little miracle" or "gift from God" ... you know, some attempt to let them know that it really is OKAY.

The gentleman had been quiet for a bit, and then asked me how her communication skills are. I answered, and then he confessed to having a higher level degree in child development and working for many years with kiddos with autism and autistic tendencies. So he knew what Cornelia de Lange Syndrome is.

I said with a smile, "Oh, so you see the fallacy in my description."

He smiled. Aside from the fact that both are congenital syndromes with developmental delays associated with them, CdLS is not "just like Down Syndrome." That's an over-simplification I use when I don't think the person I'm talking to is going to be able to relate if I go into any more detail than that.

The woman asked what I meant and I told her that CdLS is hard to sum up in one sentence.

I chatted with the man a bit about Emma's specific skills and he agreed that she was doing very well, and Emma ended up playing with the woman's jewelry a bit so all was well there, but I left feeling like I had been guilty of something.

I think I feel like maybe I'm guilty of a weird form of arrogance.

I could just say that I'm used to assuming no one knows what CdLS is because there are medical professionals that I have to explain it to, for crying out loud. And that could kind of get me off the hook for the possibly disrespectful over-simplification I used.

But I kind of feel like I'm supposed to ponder something deeper than that. I think I need to remember that there's a danger to getting used to being the only person in the room with certain, specialized information.

Yes, I have a hard-earned PhD in "Emma-ology." I (and my husband) know more about that child than anyone in really simultaneously empowering and isolating way.

It's empowering to know more than the nurses in the ER and to be able to explain medical information to them.

But it's lonely to not really be able to sum up the answer to the question "How are you?" to a socially-appropriate length sometimes. It feels isolating to know that sometimes well-meaning people just will NOT understand without a lengthy explanation and sometimes a lengthy explanation is not what they want and sometimes it's not what I want to give.

But that doesn't mean that I'm allowed to have "I know more than you know" type of PRIDE.

It doesn't mean that I'm allowed to talk to people as if my certain, unique, specialized struggle is somehow above their ability to relate to.

God has been convicting me lately about the rare form of pride that comes with struggles and I was reminded about it again this morning.

I imagine that it's like a person who's spouse is dying of cancer having trouble being sympathetic with me if I complain if Charlie has strep throat

Or a person who's house was robbed and has lost everything having trouble being patient with me if I'm pulling my hair out because I've lost my car keys.

We all have struggles.

We all have knowledge that others don't have.

We all have a path that God has given us to walk, and He has given us each a story to tell for His glory.

Do you know what I mean? Do you get so caught up in your own story that you forget to listen to others?

Or are you a better listener than I am but therefore you forget to tell your own story?

Here's what I'm praying today: I'm praying that even while I feel called to tell the story God has given me, I'm praying that He will not only give me the right words to say, but also the right ears to hear other stories.

Because He's WAY too big for just one person's story.

Thursday, September 22, 2011


I was being a good mom and took my kids to the zoo this morning.

We almost had the place to ourselves, so Charlie was running around Discovery Bay and Emma and I were walking at an Emma-pace behind him.

Charlie leaned over in the shallow anenome-petting pool and wanted to show me a star fish.

He fell in. Like, totally soaked from head to toe.

A compassionate zoo volunteer got him a towel (which they had on-hand, so I'm assuming he is not the first child to do this). She helped get his sweatshirt to a place where they could dry it and I got Charlie to a place where he could wash his hands.

She looked at me after a bit and said, "You must have a couple of older kids, too, in school now or something?"

"No. Why?" I asked.

"Well, because by now most moms are freaking out a bit more ..."

I just smiled and thanked her, not really sure how to tell her that once you've seen your baby's MicKey button on the floor, a plunge in a zoo exhibit is nothin' :)

Wednesday, September 21, 2011

That question wasn't covered in the Mommy handbook

Emma has "discovered" her feeding-tube button.

You know how most kids "discover" their toes? She will occasionally stop what she's doing, lift up her shirt to make sure it's still there, and then smooth her shirt back down ... so no one can steal it, maybe? I'm not sure.

It's pretty cute.

She's also quite concerned at the rest of her families' LACK of a button. She will come up to us and lift up our shirts, looking for our feeding tubes.

Charlie finds this particularly hilarious and actually kind of encourages Emma to look for his button. He finds that this is most easy to do when he's wearing a bright-colored shirt, like his Transformers shirt.

So yesterday, they were playing in the living room and I hear him laugh because she's searching for his button.

"Ha ha! Emma, I don't have a button, YOU have a button! I don't have CdLS! YOU have CdLS, you silly girl!"

(now, I know that may sound weird, but please keep in mind that he doesn't understand that CdLS might not be an enviable condition. He has brown eyes, she has green eyes. He eats, she has a tube. This is not something that he holds over her. He doesn't understand that some in the world are going to someday assign more value to him as a human being than her simply because he can do things she can't. Please see this through a child's eye. He doesn't see something to be pitied or fixed or explained away. This is his sister's condition, and it's something that not only makes her different from him, it makes her special. Not "special," but said in a happy voice special. To him, this is as innocently funny as a little boy looking for a little girl's ... um ... well, you get the idea ...)

And then he said to me, "Mom, I think she looks for my button more when I'm wearing my Transformers shirt because maybe she thinks the TRANSFORMERS have CdLS!"

I'm fairly certain that laughter was really my only option at that point, right? :)

Oh, the conversations you never thought you'd have ...

Friday, September 16, 2011

An interview worth watching

It's okay with me if you want to disagree with this pastor on some issues :)

But I'm sharing this link hoping that the truths spoken in this discussion will bless someone

Have a wonderful weekend!

Monday, September 12, 2011

Charlie's turn

This boy. He is so sweet. And we had a pretty good summer
Feeding his little cousin

Building forts in the living room

Building creations

Writing in the sand

And today, he went back to school.

He was so cute, he was actually a little nervous, but tried his best not to admit it.

We really love the preschool where he goes. He learns so much and has such a great time with his friends

And this afternoon, he was beat :)

Thursday, September 8, 2011

First day

Yesterday was Emma's first day of school for the year. We really love her preschool program - she did so well with it last year.

At first she wasn't sure she wanted to stay and play. She's thinking she'll just hang with "Mama" in this picture (which is what she's signing)

But then she remembered that she'd done this last year and that this really is a good place to be.

Checkin out the "school bus"

(check out my super-fashionable boot! hopefully when i go in next week the doc will tell me that things are starting to look better...)

Emma eventually got to walking around like she owned the place, like the amazing little diva she is :)

She's off! She's ready! She's going to take the world by storm :)