Leading the way

When Polly was born and we learned of her diagnosis of Down syndrome, I grieved the child I expected. I didn't know much about Down syndrome. My mind quickly flipped to un-flattering images of a child sitting alone at recess,or a mother in her golden years walking slowly through the aisles of Wal-Mart so that her adult daughter, still a child, could keep up. Sadly, it took me a while to let my guard down and fall in love with Polly.

Polly's older sisters led the way. From the moment they met her, they dripped with love for her. They loved everything about her: "Oh, look at her pudgy little hands! Look at her wispy brown hair. Isn't she just the cutest little thing ever?" When we later explained to them that Polly had Down syndrome, and that she would need a little extra help doing things, they didn't bat an eye. "I guess it's good that God gave her older sisters then, huh, mom?" Elaina said.

Indeed.

Two years ago, when Evangeline joined our family, Elaina and Zoya took the lead once again. Elaina stayed with me for seven weeks in Ukraine until the adoption was finalized. She spent long, Kiev days tickling Evie and helping me take her outside for walks as we waited for the paperwork for the adoption to go through. Once again, I struggled, and my kids led the way.

Snapshot from today:

A toy came home in Polly's backpack today from Kindergarten. It's one of those birthday favors. You blow on it and it flings out in front of you. What fun! Polly figured it out right away, and I was thrilled that it wasn't one with sound.

A little while later while I was finishing up an email on the computer, I saw Polly bring her new toy into the kitchen. Evie was sitting up on top of the table (one of her new favorite perches in the house), kicking her feet off the edge.

"Look, Evie," Polly said, moving carefully, climbing up on the bench and then sitting down next to her on the table. "Look, Evie, it blows out," she said, and then promptly gave a demonstration. I fought the urge to intervene. Evangeline is easily spooked and she is not Polly's biggest fan. Most people love a happy, in your face five-year-old but Evangeline could do without. But I took a breath and waited to see what happened.

"You see that, Evie. It's red. It's pretty. It's fun." Polly blew on her toy again. "You like that, Evie. Do you?"

And the most amazing thing happened. Instead of reaching out and grabbing the toy. Instead of crying. Instead of getting the heck out of dodge (read: getting down off the table and away from Polly a.s.a.p.) Evie laughed.

She laughed.

Polly blew her toy again. Evie kept laughing. And for about five minutes they seemed like they were, I don't know what's the word?, playing together.

It was magical.

When Polly was born, I worried that she would feel alone but I learned quickly that her sisters would never let that happen. When Evangeline joined our family, I worried, I still worry, that we won't be able to reach her. Some days she is very far into her own world. And then today, Polly initiated a game with Evie and Evie, just a little, for a few moments, let her in. Polly had Elaina and Zoya to prod her along in her development, and now she is starting to lead the way for Evie.

The magic is now gone. Polly broke her toy because she kept twisting the blow out part. Evie stole all of Polly's pretzels out of her favorite ice-cream bowl. Polly is running circles around the house yelling, "hey, Evie, leave my snack alone" and Evangeline has climbed off the table. As I type she is eating pretzel bits off my, um, super clean kitchen floor. 

But I don't care. I'll take the five magical moments when I saw Polly work her sister mojo on Evie.

Sisters are the best therapists in the world.

Perseverance

I had a nice little exchange with Zoya today after school.

"Hey Zo, did you have a good day at school today?" I asked, as my middle daughter crawled up into my lap, a challenging task in and of itself when a kid is nine years old.

"Yeah, it was a good day."

"Did you think about your dear, old mom at all today while you were at school?" I cuffed her under her chin, teasingly.

Zoya sat for a moment, started to shake her head no and then her eyes lit up and she changed the direction of her head movement.

"Actually, yes, Mom, I did think about you today. My teacher read us another part of the book we are listening to every day and afterwards she was talking about the main character and how he perseveres through his trials in life. And then our teacher asked us if we knew anyone who has persevered in life... and I thought of you."

"You thought of me?"

Zoya's words surprised me. Sometimes I worry that I am too open with my girls. They know too much. They know when I am struggling with my depression, or worried about Polly or Evie, or preoccupied with writing and getting my memoir published.

"Well, because you persevere, Mom. You persevered through Polly's stroke and brain surgeries and with trying to help Evie learn to talk. You persevere when you are sad and try to feel better, and you are persevering with your writing. I thought of you, Mom, because you persevere."

I grabbed Zoya to my chest and squeezed her as tight as possible. Even though it was a rainy day outside, for a second I could feel the sun on my face.

Now, I don't know if I entirely believe her. One could always do better in the area of perseverance. But hearing those words from one of my kids: she sees my struggles but she also sees my attempts to get through them and make things better. What a gift.

This nice little exchange with Zoya will keep my love tank filled for miles.

Answer my questions about special needs

In an effort to build a platform for the book I am writing and to encourage an open dialogue for moms about special needs, this fall I will start speaking at MOPS (Mothers of Preschoolers) groups in three States: Illinois, Indiana and Michigan.

I am in the process of preparing talks that revolve around special needs.

1) Unexpected Beauty (our family's story based on my book)

2) Loss and Grief in Motherhood (focusing on having a child with a disability and miscarriage)

3) Us and Them: How to help our kids be good friends to individuals with special needs by being good friends ourselves.

Do me a favor, answer my questions:

1. Do you have a child with a disability? How do your friends with typically developing kids encourage you in your parenting?

2. How do mothers in your circle of interaction hurt you by their insensitivity to your parenting challenges?

3. How do you teach your kids to be a good friend?

4. If you grieved the loss of a child through miscarriage, how long was your grief process?

Busy-ness and trees

It's a crazy time at our house. Everyone in the family is moving into a new bedroom. The set up will allow Elaina and Zoya each their own rooms (desperately needed... the shared room just wasn't working; Elaina is a light sleeper and Zoya has been getting into trouble with her for horribles things in the middle of the night, like, for instance, ...coughing.) Polly and Evie will still share, but are moving into Elaina and Zoya's old room. Zoya gets the guest room, Elaina gets our old room complete with a big closet (the clincher for her) and Serg and I will move into the largest of the four rooms in order to provide a bigger writing space for me at home.

I cleaned out the basement. We have nine Rubbermaids full of clothes that will be sold (hopefully) at the end of May at a garage sale in Michigan. And I'm slightly obsessed with Craigslist. I've sold the guest bed and the bunk beds and a dresser and bought Elaina's bed, Zoya's loft bed and a dresser, all in a week. My poor husband has acquired a second job as a furniture delivery man. Two rooms are being painted, and I've purchased new bedding. At some point, this all should be finished and we may get back to some semblance of normal around here. Maybe.

We are busy in other ways too. Polly and Evie each have yearly checkups in May and June: Ophthalmology, audiology, spinal scans, neurology, pediatrician general check ups, ENT, what else?, I am probably supposed to be somewhere right now... crap, where did I put the family calendar? I am thinking about schooling for Evie and Polly next year and their upcoming IEPs, forms for the older girls' summer camps (Elaina, theatre camp, Zoya, day camp) and carving out hours to finish the second draft of my book.

I'm not showered, but I did brush my teeth. There are two loads of clean, folded laundry on the dinning room table. Evie is playing with a push toy (big progress!), Zoya is home from school with the flu, Sergei's at the church and Elaina is at a friend's house mommy helping.

To be sure, it's too much. As I write Polly sits beside me, working on her lines and circles. Pre-writing skills are coming slowly. She is poking me gently on the cheek with her pencil. "Mom, write with me?" she asks over and over.

And somehow, I am thinking today about trees. In Ukraine, after Polly's birth, there was a tall, lifeless tree outside my window at the hospital. It was the beginning of April. There were no leaves, no green, hardly any sunshine. A bird sat at the tip of the tree every day, all day, for twenty days, while I waited for my daughter to gain strength and be well enough to go home. The bird became my friend. My world had been picked up and shaken like a snow globe with Polly's diagnosis of Down syndrome. He was still and peaceful. His presence soothed me.

While I've been running up and down the stairs of our two story house, flowers have bloomed outside. The trees are full of luscious, green leaves. Dandelions are growing on the front lawn.

I am drawn to the trees. I position my writing desk to look out the window. The tall limbs help me to breathe. I watch for birds and think and write. I love to look at an oak tree against a bright blue sky.

We are busy. And most days I am stressed, and worried, and unsure of parenting and writing and the new pair of jeans I bought at Target and if I am giving my best to God. But we are in a good spot, a time of peace and joy. A time of sunshine and tree leaves and for that, I am truly thankful.

I have a secret, though, something I didn't know before Polly came along. Something I wouldn't have learned had my life gone exactly as planned.

It's this:

The barren tree has purpose. How else could I appreciate spring blossoms without experiencing seasons of of emptiness? I've grown , my family has grown, and when I see a beautiful green tree I can give thanks. I realize more barren trees are in my future. That's just life. I hope I remember my secret about purpose and growth. The busy-ness of Spring will come back around for us in God's time.

And there is untapped beauty in empty trees.