Gifts, available for preorder

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Kathryn Lynard Soper is the creator and editor of a collection of personal writing by 63 mothers of children with Down syndrome that was published for a short time through Booksurge, a division of Amazon.com.

Woodbine House has since acquired the book, titled, Gifts:Mothers Reflect on How Children with Down Syndrome Enrich Their Lives. In addition to the 63 stories and photos in the first edition, there is a new foreword by attachment parenting expert Martha Sears, who is mother to a son with Down syndrome.

Becoming Avery’s mom was a defining moment in my life, and yet I didn’t have the vocabulary to talk about it. I kept finding myself at a loss for words. In my essay for Gifts, called “First Words,” I write about the power and importance of what we say, and how we say it.

The book’s release date is in July, but you can preorder a copy here.

On belly buttons and belonging

My first son Carter was born in a small rural community on the flat, sage-covered plains of eastern Montana, in the local hospital during a blizzard. The birth was all the things most first births are: terrifying and exhilarating and overwhelming and deeply humbling.

Almost instantly I realized that I didn’t know as much as I thought I did about anything, and I tried to begin paying better attention to women who were already mothers. One of them, a nurse, told me that when my baby lost the stump of his umbilical cord, I should save it. In the spring, I should plant it in the earth, so that my son would feel grounded, and always be able to find his way home.

Well, I didn’t. We moved, returning to the mountains in the western part of the state, and I was relieved I hadn’t planted my son’s future in a place we’d left. Instead, I kept the cord folded in a white kleenex tucked in my sock drawer.

Three years passed, and I forgot about the whole idea until the twins were born. They came seven weeks early and stayed in the NICU, which was where their umbilical cords came off–one day they were there; the next, gone. This worried me tremendously; everything was so different than my first birth, and now I’d lost the belly buttons.

I held the babies and cried a little, rocking and singing and thinking about all the things I was missing, and the sadness seemed almost unbearable. I asked a nurse if they might be found. She looked at me as if I’d lost my mind.

When I got home from the hospital, there was a message on the answering machine. It was from the nurse in the NICU. She’d retrieved the cords, and would leave them at the front desk for me. I picked them up the next day, each labeled and stored safely in a clean, plastic urine-sample cup.

Three more years passed. I still have the cords; two in cups and one wrapped in white kleenex. We’ve lived in this same house the whole time; it’s the only home Carter remembers, it’s the only home the twins have ever known. Tom has written two books here, I’ve written one and almost another. This land, this place has been good to us. If this isn’t home, what is?

I could plant the cords in the garden when the spring thaw loosens the soil, or I could scrape away the pine needles beneath the big tree the boys love to climb, or I could dig a little hole beneath the mock cherry that shades their room. All these choices, and yet, I hesitate.

I don’t want our sons to belong to a place, or even to me. I want them to belong to themselves. I think when they are big enough to understand, I will return the cords. I will give each boy to himself, and let him make of it what he will.

NDSS sent this email:

Dear Affiliates,

We are thrilled to announce that 500 Barnes & Noble stores across the country will hold special “Storytime” events for children ages six to eight in February to raise awareness about Down syndrome.

The events will also incorporate readings from Melissa Riggio’s article “I Have Down Syndrome,” which was recently published in National Geographic Kids. Melissa is the 18-year-old daughter of Steve Riggio, CEO of Barnes & Noble, Inc. and a member of the National Down Syndrome Society’s Board of Directors.

Melissa wrote in her article, “It’s true that I don’t learn some things as fast as other people. But that won’t stop me from trying. I just know that if I work really hard and be myself, I can do almost anything.”

We encourage you to contact the Community Relations Manager at your local Barnes & Noble store(s) to get involved in these exciting events! You can participate by:

Encouraging your members to attend the events through your web site, e-mail distribution, and/or newsletter;

Assisting your B&N Community Relations Manager with local media outreach;

Providing brochures, flyers or other materials about your local group’s programs to be available at the events (Note: A limited number of copies of the “About Down Syndrome” brochure from NDSS will be available at each event);

Following up with schools/educators in your community after the event with information about Everyone Counts: Teaching Acceptance & Inclusion, the NDSS disability awareness curriculum for grades K-6.

Please click here to see the list of Barnes & Noble stores participating in the Down syndrome awareness events and their respective Community Relations Managers. (If there is not a Community Relations Manager at your local store, you can contact the main number listed.)

If you have any questions, please contact Erin Geller at egeller@ndss.org or 212-763-4379

Carter writes about Avery,

for a second-grade reading assignment, in answer to the question, “Do you know anyone in your life who can not walk?”

“My brother Avery is learning to walk. He can not talk much but he can talk in sign language. Sometimes Avery laughs and sometimes he tips over. He likes to ride in a wagon. He is a cuddly one. I call him Little Junior. I love him very much.”

Potty time

Bennett, for some while now, has been struggling with toilet learning. We have days when he “gets” it, then days when he is weepy and barely able to control himself, let alone his toileting.

The other morning, Avery toddled over as I pulled on Bennett’s big-boy underpants. He pointed at the diaper he was wearing, then at the underpants Bennett was wearing. “No,” I said. “You’re not ready.”

Avery continued to point and fuss, using all his sounds, and all his signs, to convince me that he needed to wear big-boy pants, too. So I gave in and let him wear a pair of Buzz Lightyear’s, size three.

The afternoon passed. Next time I noticed, Avery had scooted over to the potty chair, removed the Buzz Lightyear’s, and was happily using the chair for its intended purpose.

Mama note to self: please don’t tell Avery what he can and can’t do ever again.

Sesame Noodles

Tom makes this recipe when he is feeling in the mood to be in the kitchen. I love the way these noodles taste, and I love that he cooks them for me.

1/2 lb. linguine
1-inch piece fresh ginger root, peeled and cut into small pieces
I clove garlic, peeled
1/2 cup creamy peanut butter
1 tablespoon dark brown sugar
1 tablespoon red-wine vinegar
1/4 cup soy sauce
3 tablespoons strongly brewed hot tea
2 tablespoons dark sesame oil
2 tablespoons Chinese hot-chile oil

Begin cooking the pasta. In a small food processor, pulse the ginger until finely chopped. Add garlic, pulse. Add peanut butter and pulse until thick paste forms. With the machine running, add remaining ingredients. Yields about 3/4 cup, enough to cover the linguine. Drain noodles, toss with sauce. Add sliced scallions, seeded and diced cucumbers, shredded carrots, and bean sprouts, if you like.

Break

When my oldest son Carter was three years old, he broke his leg. Until that moment, my mothering experience had existed well within the confines of the baby books…sleep deprivation, diaper rash, the occassional cold. The broken leg brought me to a new place in my parenting–what do you do when, despite your very best efforts, things do not go as planned?

The essay, called “Break”, is up at Literary Mama, here.

Barnes & Noble Booksellers

has a new initiative this year focusing on Down syndrome. Each store is being asked to hold an in-store event connected with Down syndrome during the month of February.

The purpose of the event is to bring awareness, particularly of the many talents and strengths of school children with Down syndrome. The focus will not be on obstacles, but on celebrating achievements.

(This information was found here, and Tom and I were contacted by the Missoula B&N to participate in an event there on February 10.)

Hurt

Three of my friends are hurting: each woman, for different reasons, is feeling the tug of family, motherhood, and life pulling her in too many directions. Another dear friend’s father is ill. Still another lost her sweet puppy to an accident in the road. The pain of the people I care about makes my heart heavy. I feel small, and mostly useless.

Avery has always been really good at knowing who needs a hug. He hugs with his whole body, and holds on so tight, that when I am hugging him, there is nothing else, no other thought, no room for anything but the embrace.

This: the child I once worried would be a burden, lifting my burden.