Ordinary Joy

Like any self-respecting mom of a child with special needs, I know all about Holland. I’ve read the poem, and I know there are supposed to be tulips and windmills. I can’t often find them, but I know I’m supposed to discover them somewhere among the syringes, IEP notices and medical binders that litter my child’s room. I know those tulips and Rembrandts are supposed to remind me that, even if my trip to Italy isn’t going to happen, there is still joy to be found…but where?

When my daughter, Jillian, was born in 2001 defying the doctor’s predictions that she wouldn’t survive outside the womb, joy filled that small hospital room. Any tears we had were overshadowed by the amazing fact of her being alive, crying and kicking and feeding as newborn babies do.

Within weeks, though, Jillian had a long list of frightening diagnoses, and we were faced with the reality of her life-long disabilities. I simply couldn’t imagine how I would ever know true joy again. Doctor’s offices, hospital rooms, and the PICU certainly didn’t seem like places where joy could live. Therapies that involved tears–hers and mine–didn’t seem like the path to happiness, though I knew they were good for her. Even her much-awaited kidney transplant, while reason for celebration, was still fraught with more fear than joy, knowing it was only one of the many medical challenges she faced. It seemed this never-ending journey of living with disabilities and complex health conditions couldn’t possibly hold anything other than fear and worry.

I craved joy and happiness the way I craved sleep. (And we all know the intensity with which we crave sleep when our children’s needs know no boundaries). Slowly, I realized that I couldn’t sit around and wait for joy to tap me on the shoulder and announce itself. I had to actively seek it out, look for it, and know that our lives should not be lived without it. More importantly, I began to understand that joy was critical to our experience of parenting Jillian. I wanted her to live a life filled with as much laughter, hope and love as she could find, and I wanted to show my older children that our lives hadn’t dimmed with Jillian’s birth.

For me, joy has been found in the ordinary moments, in the everyday errands and trips to the mall that are part of living a life with three children. Sitting at Starbucks, I watch as Jillian drinks her favorite vanilla milk while my teenage children chatter about frappacinos and lattes. Driving home after a challenging outing that resulted in an exhausting tantrum, I crank up the radio in the car while we all belt out the lyrics to a silly Broadway show tune, and I grin like a fool when I hear Jillian, along with her brother and sister, singing “Popular” from the Wicked soundtrack in harmony. Sitting around a campfire on a quiet evening, surrounded by friends and family, I sigh in contentment as Jillian cuddles in warm blankets and eats gooey marshmallows and melted chocolate. Listening in to the sound of her brother’s voice, I hear the way he describes each scene for her, giving her the words when she can’t have the pictures, as he reads to her from his beloved Harry Potter books. Peeking in her room while on the phone with the medical supply company, I smile as her sister patiently shows Jillian how to put on strawberry lip gloss while getting ready for ballet class.

It isn’t only that these are experiences that, in darker moments, I wondered if she’d ever be able to have. It’s the wonder in discovering that her accomplishments, while always cause for excitement, are not the only focus in our lives. It’s the amazing truth that life is lived in precious moments, and that even the smallest of those holds the capacity for true happiness. Those moments aren’t about Jillian’s special needs or chronic illness. These moments, these ordinary joys, are the ones I store carefully and neatly in my memory because they are so simple, so much part of the life I almost didn’t dare to dream we could have.

It would be easy to see only the darkness on this path–the worry, pain, anxiety and fear that are our constant companions. But seeing the joy in ordinary moments helps me to step out of the shadows and remember that joy, laughter, kindness and compassion can also be found along the way.

Brenda Allair is the mother of three wonderful children, including Jillian (13), who is blind and has complex health care needs as a result of an undiagnosed syndrome.  Brenda works as a teacher of students with Visual Impairments.  She is an advocate of patient and family-centered medical care and works with several organizations as a parent advisor.  You can follow her experiences on her blog, Musings at Midnight.