Count It All Joy
Life's Lessons from a Child with Special Needs
by
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My grace is sufficient for you, for power is made perfect in weakness.
—2 Corinthians 12:9
Preface
When our son, Christian, was born in 2001, there was scant literature about the daily life experiences of a child with Down syndrome. I was, however, provided with books containing definitions of Trisomy 21 (the medical term for Down syndrome), medical facts and statistics, and expected negative outcomes for such a child’s physical, educational, and behavioral characteristics. I read those books diligently and began formulating a laundry list of everything I could expect to go wrong with Christian as he grew.
Within a year of his birth, Christian had open heart surgery to repair a serious birth defect, and within four years, our suspicions that he had autism, in addition to Down syndrome, were confirmed. Transitioning from a place of anxiety and despair to a place of joy and peace, embracing challenges with a positive attitude, and providing unconditional love for Christian were conscious decisions revisited frequently.
This book is my testimony, my personal account of the beauty and uniqueness of a child with special needs and an account of how raising this child has blessed me. My testimony is that Christian has taught life lessons to me that I may not have learned had it not been for what many consider his disabilities.
Let me confess that I started with neither an open heart nor an open mind to embrace the miracle and blessing of Christian from the very first moment of his life. This was mostly because the prospect wasn’t presented to me as an option. Over the years, I have realized that I wasted precious moments in negativity and wish fervently that I had been told of the amazing future that I could have with Christian. But Christian taught me those lessons on a daily basis.
Parents of a child with special needs struggle, just as they would with a typical child; that’s what parenting is all about. We are all aware that no child is given a struggle-free life card along with his/her birth certificate, and there is no choice in this matter. However, each of us has a choice as to how we think and feel about the experiences we will have with our child. The following anecdotes are testimony of my transformation from hopelessness and negativity to beauty, hope, and joy.
Here am I, the servant of the Lord; let it be with me according to your word.
—Luke 1:38
Lesson 1
Today
Today is the day I decided to write about life with Christian, our now thirteen-year-old son with Down syndrome and autism.
What makes an eighteen-foot Slip-N-Slide the center of the universe to Christian? He intently watches glistening water droplets bounce off the sea-blue landing strip, with neck craned, arms extended, face gleaming upward, and eyes squinted, reveling in the streams of water splashing against his remarkably long tongue. There are many ways to be fully immersed in this simple activity, and Christian found all of them.
My limited mind never imagined any but the usual ways to use this simple toy, but Christian jumped on the slide and created playful melodies of water, streaming like a symphony. Such joy to watch him, belly down, back arched, arms extended across the slide and racing back to the start for endless encores. Then there were Christian’s precision bounces, with just the right pressure to squirt water rivulets in rhythmic succession from the openings in the supply tubing. Forward, backward, sideways across the slide into the reservoir. Pure joy! From a distance, I can feel his joy. I feel it enter my soul and warm me from the inside, and I feel a gentle smile pull the corners of my lips upward toward the heavens. And I feel joy in the moment, along with him.
I didn’t feel this joy when I began my journey with Christian. I wish I had. I was always told by the experts and caring friends, who, with a pacifying voice, said, “It’s going to be okay,” after Christian was born. These well-meaning people might make the same remark to a friend after the death of a loved one. But now, I am telling my stories of discovery for parents of a child with special needs, and I say, “It’s not going to be okay; it’s going to be better than okay—much, much better!”
Don’t settle for anything less. Find the beauty in your child. Live in the fullness of your child and create beauty for your future today.
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About the Book
Life’s lessons are often learned in the most unexpected circumstances. Count It All Joy chronicles Kathleen Murray’s candid account of her inner struggles after learning about her son’s diagnoses of Down syndrome, autism, and a congenital heart defect. Through heart-wrenching honesty and humorous self-inspection, Kathleen presents the option to choose joy in the face of challenging circumstances in order to live a life of contentment and hope.
Kathleen goes from having difficulty looking into the eyes of her newborn child to endless moments of true inner peace in cherishing and appreciating the beauty and wonderment of her son with special needs.
Count It All Joy is a powerful memoir of revelation and transformation, brimming with insight and learning opportunities to galvanize caregivers to find joy amidst difficulties. It is a life-altering meditation about the journey of a special family that will make you laugh, cry, and deeply touch your heart—a journey toward unity, happiness, humility, and most of all, unconditional love.
About the Author
Kathleen Murray is the mother of a child with Down syndrome and autism. She holds a doctorate in communication sciences and disorders from Northwestern University and has published several journal articles in her field of study. Dr. Murray enjoys working part-time as a speech-language pathologist, and she lives in Naperville, Illinois, with her husband, her three children, and her dog.