A stooped and white haired doctor touched my shoulder and gently asked “Has anyone spoken to you about your son’s development?”
In that moment, in a hospital emergency room long ago, I turned from being a new mother into a lifelong caregiver. My baby was only three months old and was seriously dehydrated. I assumed that Nicholas’ myriad of symptoms including endless crying and an inability to properly suck and swallow were due to his premature birth. That day, I remember hoping the word ‘development’ meant my baby’s length and weight. At the time, I couldn’t bear to grasp the true meaning of the doctor’s question: whether anyone had told us that our son had cerebral palsy and possibly a cognitive disability as well.
Throughout the years of our son’s life, the identity of caregiver has pulled and pushed me like tides ebbing and flowing.
Although I denied knowing what ‘development’ meant to the ER doctor, I did know. I just didn’t want to admit it to him, or to myself. But later at home, a sense of dread infused my days and nights. So a month later, when another doctor confirmed Nick’s diagnosis of severe cerebral palsy, I felt relieved.
Naming our shared enemy put my baby and me on the same team. Now, I was a caregiver on the warpath. Nicholas was my first child and I had the natural optimism of a fairly well educated girl who always worked hard to be on the honor roll.
In those early days, I believed that the power of my love, my reason and my will could cure my son.
Nicholas was quickly assessed at our local children’s treatment center and we began a rigorous regime of physical, occupational and speech therapies. I discovered ‘Conductive Education’ and we added that to our program too. We had a visiting infant stimulation expert at home and swimming and music lessons for babies with disabilities at a local community center. After a couple of years, I collapsed. One day, I was describing our daily routine to a friend. I suddenly asked myself, “What am I doing? Nicholas is a child and I am his mother! He is not my project, he’s my baby!” Tears welled in my eyes and I turned away from my friend, hugging Nick tighter. I vowed to change our family life and our therapy goals. To do that, I would need to be more of a mother and less of a caregiver.
My roles as caregiver and mother became less at odds and more integrated as I advocated for Nick’s needs over the years. I learned to put those different hats on when required, and sometimes, both hats at the same time. When I advocated to local authorities for help at home, I used my expertise in caregiving as a counter-balance to a declaration of love for my son. Presenting in too clinical or too emotional a manner wouldn’t have yielded the results we needed and it wouldn’t have reflected the truth about our lives.
Nicholas is 25 years old now.
Although he’s largely bed-ridden due to chronic pain, he is a blogger, sports journalist, and self-described ‘sports media analyst’. Nick lives in a care home near us and we visit him often. Skype technology has allowed my husband and I to take month long holidays without too much homesickness on anyone’s part.
I never abandoned my role as Nick’s caregiver and I never will. I just put it in perspective. Although Nick never overcame the effects of his disability, I am always his Mom first and he will always be my treasure.