What I Wish I’d Known
by Michelle Odland
October is Down Syndrome Awareness Month. An awareness month I didn’t know existed until my own precious girl was born seven years ago. I still didn’t know when I was handed that bundle wrapped in a pink blanket with dark (long!) brown hair and blue eyes that peeked at me in between sleeps.
The morning after my Nyssa was born I first heard the phrase “Down Syndrome” and shortly after that “congenital heart defect.” I was devastated, scared, and overwhelmed with the thought of having a daughter with special needs. I spent hours crying with the sweet nurse that was with me when I heard of the diagnosis until my husband came back after a much-needed nap at home.
My beautiful girl taught me.
Your smile with the dimples, blue eyes crinkling with a full-faced grin and crooked teeth instantly raises my spirits. No matter how I am feeling, what I am doing, even if I am crying, that smile cures all. I cannot resist smiling back. It’s cause and effect—just like playing peek-a-boo with you these years. In that smile I feel your absolute joy of life and am humbled that an eyebrow raise or a silly noise can instantly bring you to giggles. And me in turn.
I carry you at seven. Because it’s easier when the rain is falling, there are cars on the street, or you’ve just had your blood drawn again. Your fifty-pound body can wrap around my hip as easily a toddler’s, except that you get so excited you wrap your arms around my neck and practically choke me. And I don’t get mad. Truthfully, I love the hug and I breathe in the moment. I know some day you may grow too big to want that.
I should have bought stock in diapers. Seriously. I never expected to be potty training (and failing at it) seven years later. But I also know that you do every thing on your own pace. Right now isn’t your time to use the toilet. Some day you will walk to it, sit down and do it. Without me asking. Until then we can continue our orchestrated routine of pull-ups and diaper wipes and don’t forget our jokes. You tuck your feet behind your head (yes, your head), and I threaten to tickle them.
I keep most toys out of your room. Because you’re loud at night. I love that you soothe yourself, but I don’t appreciate the thump of your Cabbage Patch Doll hitting my bedroom wall over and over. Even with the hysterical giggles that come with it. I know that throwing is your release. That’s why you have stuffed balls in your room. Throw the pillow at the wall. No, the other wall. I want to sleep.
Trying to find you a comfort item results in a comfort pile. Instead of rotating your pink crib blanket with the flowers as I’d planned, you choose to have all three of them at once. And your stuffed puppy, Violet. And your rainbow striped fuzzy blanket. And Lotso.
Lotso. Who knew this talking bear which smells like strawberries that your dad and I bought you on a whim would become your best friend? You have conversations with him. And we were terrified we’d lose him somewhere so we bought a second one. So now you have Lotso 1 and Lotso 2. You know the difference, but love them both. When we went to Disney World we saw an entire kiosk of Lotso bears. And so we met Lotso 3. And they’re all unconditionally loved. You don’t treat them differently; they’re just “your bear.” I love that about you.
After heart surgery, adenoid removal, RSV, and countless hospital stays I’m a bit neurotic when your asthma flares or you have a respiratory infection. Once I know you are, in fact, breathing okay without oxygen I can relax. And appreciate the fact that my big girl snuggles up on my lap at these moments. I can rock you to sleep like we’ve spent countless sick days doing. And I know you’ll be well soon and refuse to sit on my lap, so I am going to enjoy this brief illness.
You’ve made me a better person, Nyssa. I can stop and see the beauty in a bird chirping, a silly “mongee” scratching his arms at the zoo, or bubbles. You’ve helped me realize that life can’t be planned with you and that’s okay. The beauty is the adventure along the way.
About the Author
Michelle Odland has a degree in English from UW Oshkosh in English. She lives in Wisconsin with her husband and their three children. Michelle learned what she needed to know about Down Syndrome with the birth of her second child, Nyssa. It is a work in progress. She spends her free time volunteering with Special Olympics and JDRF and learning about life from her children. You can learn more from her at http://www.mylifewiththree.wordpress.com.