Sometimes I forget how old I am. I think I should still be in my twenties, a newlywed who just added to her family.
As I lifted my 15-year-old daughter out of the car recently, I was reminded of my actual age. With snow covering the parking lot, Jaycee was afraid to step out of the vehicle. When coaxing didn’t work, I chose to take matters into my own hands and gently placed her on a spot on the pavement that had a small clearing. That’s when my body notified my mind that we are both older than I think we should be. Jaycee used to be lighter, and I used to be much stronger.
I recall lifting her from her blue car seat years ago. That seat was one of our first baby purchases. Our intuition told us we would have a boy, so the blue color coupled with the sale price made sense. The car seat seemed to swallow up my baby daughter with Down syndrome. She looked small and fragile in it. Before lifting her from the seat, I carefully unbuckled Jaycee, made sure her oxygen line was free of obstacles, and gathered the pulse oximeter cord running from her foot. Moving her was difficult back then too, but for different reasons.
There are still things to maneuver now. Disconnecting and connecting tubes and hoses have been part of life for what seems like an eternity. During the day, a nebulizer, airway clearance, and cough-assist machine are used as part of regular routine. At night, the bi-pap is needed to support her breathing. She gives a thumbs up or down to indicate how her bi-pap feels before I leave her bedroom.
In her bed, Jaycee has meticulously chosen companions over the years. Barney, Princess Belle, Anna, Elsa, Beast, a deer, and other animals have rotated in and out of her bedtime routine. Currently, she sleeps with three baby dolls, who are named after three of her cousins, and Hulk. Each night, she carefully places her babies in just the right spot on their side of her bed before covering them.
I remember kissing her good-night as a baby, right after saying an earnest prayer for her health and long life. Back then, I had great difficultly envisioning her future, when her life had been threatened by two different heart conditions and a few different lung problems, which took three hospitals and years to diagnose and treat properly.
Photo credit: WorldDownSyndromeDay.org
It also took years to detect and process my own feelings.
In my twenties, Down syndrome was an overwhelming and looming diagnosis. I read everything I could, and most of it did not comfort me. Doctors, professionals, and books tried to paint a picture of Jaycee’s life for me early on. I wanted answers to questions only time could tell. I was scared of so many things ahead of us.
In my thirties, I achieved a much healthier balance in life with Down syndrome fading more in the background. The older my daughter got, the less I read about Down syndrome. I knew her well by this point, and understood there are some answers not found in books.
At forty, I have much knowledge about my daughter that I wanted so long ago. I still can’t look too far in the future with great certainty, but I know we’ll be fine together. It is amazing what love can do!
On World Down Syndrome Day, I appreciate all the time I have spent raising my child with Down syndrome. All life is God-given and is to be celebrated. There was a time long ago that I lost sight of this perspective. God patiently waited for me to look past words of a diagnosis to see my daughter for who she was created to be.
Sometimes I feel my age and have no trouble remembering how old I am. I am thankful for the wisdom, acceptance, and peace that has come through time.
Evana is a wife and mother of two children. Since becoming a parent, Evana has spent many hours driving to specialty appointments, praying beside a hospital bed, and learning about her children’s diagnoses. Evana is also a pediatric speech-language pathologist and serves children with autism, feeding disorders, and other developmental delays. You can connect with Evana on Twitter, Facebook, and her blog, A Special Purposed Life. You can also read more about her family’s story in her book, Badges of Motherhood: One Mother’s Story about Family, Down syndrome, Hospitals, and Faith.
