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.
All the bureaucracy and agencies in between who think they know what’s best for my child/adult and then make learning how to manage and access the needed support they gloat about so generously providing, a huge mountain to climb to get services!
A parent loves and teaches a child how to become an adult a caregiver steps in when the person cannot do for themselves.
What wise words, Eric. In the case of our family, it’s absolutely true that the roles of caregiver and mother were most at odds when our son Nicholas was small and very ill. Life in our home was fraught with crises, made more difficult by extreme sleep deprivation. I realised that I was looking at Nicholas’ arms and legs much, much more often than his face and that epiphany shocked me. I didn’t want my role as mother to suffer – I was unequivocal on that. If a role had to suffer, I decided that it would be the caregiver role. That you so much for your sensitive comments.
Well put Donna. I would like to add a thought though and that is that the ability to find a balance naturally comes with time if at all, since many parents are told they will not have much time with their child and opt either for full ‘Parent’ mode, or for full ‘Caregiver’ mode. Also the extent to which the pendulum swings in one particular direction has a great deal to do with the severity of a child’s condition. When hospitalizations are routine, medical crises a weekly or even daily occurrence and chronic sleep deprivation due to being a single parent as well as no nursing help define the experience, one role will suffer significantly and it is a hard decision, if a decision at all.