Monday, February 28, 2011

Literacy, pudding and hope

"Wow! Polly is really smart!" I beamed as my daughter sat up to the table like a big girl. Using her pointer finger, she slowly mimicked every word her literacy helper read. I thought about when she was born. Oh, how I worried. She'll never talk. She may not even communicate. Will she ever learn to read?

Gigi's Playhouse is a wonderful Down syndrome Awareness Center right near us here in Chicago. They offer play time and networking, and stuff for older kids and siblings, and parents. And they have this great literacy program. When you sign up, you are then matched with a volunteer to work with your child a few times a month. There are booklets for various subjects like family and home, food, the zoo. Through repetition, a kid starts recognizing and matching pictures and soon that turns into recognizing and matching words and sentences.

Polly and I walked to her first session today. She talked the whole way there. I showed her the blue sky. "The moon is yellow at night." She answered. "Yes, you're right!" We got there a few minutes early so we waited for the session before us to wrap up. Polly sang Twinkle Twinkle on stage. "Your turn, mom." She said. I quickly changed the game.

During the session I couldn't help but tear up. Before I knew it, Polly's whole story was leaping from my mouth. "Polly's had such a big couple of years. She had a stroke and suffered temporary paralysis, was diagnosed with Moyamoya syndrome and underwent two brain surgeries." "Wow, she is doing so well. She's a superstar, really," the helper oozed.

And I glowed.

You see, I really wanted a superstar. When we were told Polly had Down syndrome, I grieved the loss of the child I expected. And then I decided she would be high functioning. I would do everything in my power to make her the best. She'd be the next Corky!

Enter Evangeline. I believe God gave Evie to me just like he gave me Polly. She was meant to be mine. Evie is four and a half. She has no words. She used to sign more but has stopped recently. Her eye contact is sporadic. She still really isn't playing with toys properly. It takes a while for her to trust you. Cognitively, she averages around a nine month old.

But she is progressing. She smiles more now and she seems to really like her family. Sometimes, though, I catch my heart aching because I want to see her do more. She'll never talk. She may not even communicate. Will she ever learn to read?

I am quite thick skulled.

After the literacy session, I zipped Polly up into her pink winter coat. She insisted on pushing the umbrella stroller home. We meandered down the street, often times running the flabby ten dollar stroller into buildings and weaving around runners and walkers trying to politely pass.

Polly continued her monologue directed at me. And I found myself thinking sadly about Evie. Will she talk? Will she read? Will she ever be ready to be matched with a literacy volunteer at Gigi's?

I want to communicate with Evie. I want to see her progress cognitively. And I really want to be past the baby stage. I mean, it's been like ten years now.

When we got home, Sergei was just getting in with the rest of the girls from school. Polly had left a half eaten cup of pudding and her spoon on the table before we left. While the rest of us were taking off coats and boots, Evangeline, who is sneaky and quick, made a bee line for that pudding.

By the time I got to her, she was sitting up at the table spooning it into her mouth. She glanced over at me as if to say, "So? What are you looking at?" I was so excited to see her self feeding. She hasn't initiated it once since she's been home.

And you know what? I had that same feeling of accomplishment I had at Gigi's playhouse with Polly. Evie wasn't learning pre-reading skills. But she was learning to feed herself. It was progress. I was thrilled.

When you parent kids with special needs, it's not about the accomplishment. OK, well, sometimes it is. At least for me it's a struggle. But it is more about the effort. Every time I see one of my kids do something new, or progress a bit in an area of development, my hope for them is rekindled. And it feels fantastic.

All my kids are superstars because, simply put, they are mine.

I hope some day I can lick comparing other kids with special needs to mine. I hope some day I can stop wanting Polly and Evie to be equal developmentally. Comparing is such a waste of time.

But, sigh...

I am thick skulled.


  1. Gillian,
    All of your girls are beautiful...Dave and I consider it a joy every time we get to hang out with you guys and get to know your girls a bit better. Each of them have such wonderful personalities.
    ~ Kirsten

  2. Oh Gillian, I have the same struggles and me two aren't special needs. I wonder when I will stop comparing them to other children or each other, too. I think it is a universal mother struggle. And I too am thick-skulled. When you find the answer, let us all know!

  3. Our kids are a wonder - all of them!

  4. What proud moments for you. Praying for many more. God is there in the little things, isn't He? :)


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