Just a few weeks before my Downs syndrome daughter passed away, something beautiful happened. That January night, I was sitting on the couch in our family room watching the nightly news. As I listened to the weather forecast, “another four inches of snow”, Sarah drew near and snuggled in next to me.
While Sarah’s sisters were now grown up, the two of them away at college, Sarah had remained at home with me. Even though she was 23 years old, she was still, in so many ways, just a sweet little girl. Wearing a pink flannel nightgown, trimmed with ruffles and lace, her hazel green eyes shimmered like two little stars.
For a moment, we just smiled at each other. A year earlier, the doctors had diagnosed her with acute pulmonary Hyper- tension. “The pressures in her lungs cannot sustain life much longer…her time is limited” we were told.
I knew Sarah was slowing down. Yet, that night, as she sat next to me, I felt completely at peace. “Remember this moment” an inner voice prompted.
I began memorizing way Sarah looked, the happy glow of her freckled face, the radiance of her dimpled grin, the way her long chestnut- brown hair caught the light of a nearby lamp. God’s presence seemed to flicker between us, like a candle that could never be snuffed out.
She wrapped her small hand around mine, holding it tightly. “You’ve bbeen a rrreally good mom…..” She stuttered.
My thoughts drifted back in time. In my minds eye, I saw myself at 26 years of age, lying in a hospital bed, recovering from the birth of my first child. Right next to my bed, newborn Sarah slept peacefully in an incubator.
Just a few hours earlier, the doctors had delivered their dreadful report: “Your baby has an extra chromosome… we’ve noticed some symptoms…our preliminary findings indicate that she has Downs’s syndrome….”
I turned my glance toward my new baby. It was hard to believe that her handicap was completely non-negotiable. She looked so fresh from heaven, her tiny face aglow with life, her little body wrapped in pink hospital blankets.
Questions, all of them unanswerable, filled my thoughts. Why my baby? Why our family? What does the future hold?
I wondered why God had allowed her disability. I felt scared, doubtful, ill-equipped to face the years ahead. How could a be a good mother to a child with so many limitations?
But now, over two decades later, I had come to understand that Sarah’s limitations, once so fearful, had become the tools that God had used to mold me into the mother I was intended to be.
Her special needs had slowed me down long enough to notice, to savor God’s presence at work in my life. Because of Sarah, I now understood that walking, talking and speaking are small miracles, worthy of praise. Throughout the years, as she had learned to dance, sing, paint, read and write, I had learned that prayer changes things and that faith can and does move mountains. “Mom…God llives in yyour heart” Sarah often told me.
I brushed my hand over Sarah’s hair. I didn’t want to miss the opportunity to tell her how much her life had meant to me. “You’ve been a really good daughter…” I said. She grinned, as if she already knew.
It’s been a little over a year since Sarah died and I miss her terribly. Yet, I will always treasure the words that the two of us shared on that January night in our family room. I’m humbled to think that, despite all my initial doubts and insecurities about raising a handicapped child, it was Sarah who had transformed the life of this one very imperfect mother.
As I write this, I’m thinking of a passage in Romans that reads: “All things work for good for those who love God, who are called according to his purpose…” Romans 8:28. This is one of my favorite verses because it reminds me that God is capable of turning our greatest challenges into the most beautiful blessings we will ever know.
“All things work for good….” For me, these hopeful words have taken shape and form in the lessons my Downs syndrome daughter taught me while she was on earth. How do these words speak to you? Perhaps a recent job loss has called you to trust, more deeply in God’s promise to provide. Maybe the illness of a family member has strengthened your prayer life and prompted you to seek the power of his presence, his strength, his healing touch. Even the unexpected death of a loved one may have instilled in you, a desire to live your life more fully and a longing to follow the dreams in your heart.
My name is Nancy Jo Sullivan. Over the coming months, I will be writing a weekly column for CatholicMom.com. I have titled my column, simply, “All Things Good” I am looking forward to sharing more stories about Sarah and the lessons she imparted during her short stay on this earth. I hope these humble reflections will inspire you to look for God’s goodness in your own life. You’re sure to find it in all things.
Copyright 2009 Nancy Jo Sullivan; All Rights Reserved