By Dawn Duesler
People often tell me I see the glass half-full; I am the forever optimist. I guess this was always true, especially when the doctor put our squirmy, red-faced little girl in my arms for the first time. I remember this moment vividly, nodding at the doctor’s apprehensive words, as if he were at a distance, family and hospital staff carefully watching me. Even as the doctor was telling me that he had “some concerns,” and “are you familiar with Down syndrome?” the focus was my beautiful daughter. Her hearty cries filled the silent room, but all I could do was smile and stare at the cause of my newfound and growing love.
Joanna, or “Joey” as we fondly call her, came into this world willful and determined to be her own person. Even though I knew I would face challenges with her, I couldn’t be prepared for the combination of those challenges intertwined with the daily struggles of just being a new parent. My first bit of advice was firmly delivered from our pediatrician: “Just go home and enjoy your baby.” Such a simple lesson in a turbulent time, yet so easy to do. And so the celebrations continued.
I’ve always counted my blessings, but Joey showed me how to celebrate them as well. I am blessed to have supportive family and friends surrounding me who have accepted and loved Joey from the start. Though I exchange day-to-day motherhood stories with old friends, I realize I have something they will never have. Yes, a child with special needs, but also, a deeper appreciation for things many take for granted.
Sure, there are those milestones parents celebrate: first smiles, first words, first steps. But when my speech-delayed daughter ordered her own food, saying “thank you so much” to a smiling restaurant server; when she instinctively and gently hugged a crying friend; when she belted out songs from the radio, remembering the names of the artists who sang them, nobody celebrated like I did.
Sometimes they were joyous celebrations shared with family and friends. Sometimes they were quiet inner celebrations--little dances in my head, my fists triumphantly pumping in my mind. Each day, as Joey learns new things, she continues to thrill us with her accomplishments, big and small.
Along the way, I have met amazing people who also have children with special needs. There is a special kind of bond with them I couldn’t have with anyone else. Comparing health issues, therapists, and behavior mysteries leaves me with a feeling of camaraderie on this journey. Although I have certainly kept my dear old friends, I’ve made some that have enriched my life beyond words.
On a daily basis, I continue to struggle up that hill of parental challenges as all parents do. Issues at school, with friends, lack of motivation at home; all the things that leave me scratching my head. Parenting in general didn’t come with a manual, not to mention parenting a child with special needs. So although some days are cloudy, Joey is my silver lining. She has a gift of knowing when I need a hug on a not-so-great day. Overcoming a behavior issue at school deserves a dinner at Red Lobster. Finally using the toilet--independently--was cause for a party in our house. Solely her smile and her triumphant “I did it!” makes all the sunless days worthwhile.
Joey has a way of making me see the simple pleasures in the world. Seeing things through her eyes is like seeing an ocean sunset in person, rather than just viewing a photograph. Her excitement is contagious. People in her life are treated like celebrities while she runs, beaming, to greet them. Simple praise for accomplishing the simplest of tasks radiates in her smile. Her giggles make you feel giddy inside. Her nurturing heart lets her little brother know she’s looking out for him. These are the blessings I get to live with every day as her parent.
I often think about how lucky I am to be her mom in this day and age, with so many resources at my fingertips. Sadly, I’ve read about conditions our special children in the past had to endure as soon as they took their first breath. Heartless institutions, lack of meaningful relationships, no job opportunities, no feelings of pride. So many missed chances of being raised as happy citizens as their developments went underestimated. Now I see teachers, among others, who adore my daughter because she’s happy and she spreads that happiness. Her endless curiosity keeps them forever on their toes. They work hard to give her all the opportunities she deserves, yet guide her with a strong and unforeseen patience.
It warms my heart to see people who see my daughter as Joey, not just as a little girl with Down syndrome. For some, it may have taken longer to really know her, but nonetheless, however long their journey, they got there. Such is the way of my special little girl. I watch her with pride, as she develops in her own time. She is that late blossom that emerges just when the garden seems full. The blossom is a different color and stands out from the others, yet its brilliant beauty adds a special touch.
I wish I could stop and smell the roses as Joey does, oblivious to the thorns that come her way. She enjoys life in the now--unafraid, certain, confident, leisurely. To hurry is to miss the good stuff. Such a simple lesson. In my daughter’s eyes, there are countless reasons to stop and celebrate, so how could I not?