Yesterday I was listening to CBCs The Current where a panel of three individuals was discussing how the word “disability” is used, and not used, in current discourse. One of the participants was Ian Brown, author of The Boy in the Moon: A Father’s Search for his Disabled Son. For those who don’t know, Mr. Brown’s son, Walker, as described in his book, lives with severe disabilities and is medically fragile and technologically dependent. As an aside, I loved Mr. Brown’s book. For me, it was the first book that adequately described the chaos of my life without sugar coating the story with some mandatory happy ending. He let the story stand in all its chaos while still conveying his profound love for his son. That is a caregiving story that resonates for me.
During the course of the program Mr. Brown suggested that when caring for his son the bulk of one’s energy is devoted to managing chaos. I think the phrase he used was something like preventing fires, but I would have to re-listen to the podcast to be sure! However, what caught my attention was when Mr. Brown suggested that it was when his son, now 19, moved a to a group home he was able to more fully develop a relationship with his son because he could hand off caregiving responsibilities.
As someone who is only beginning to entertain Matthew’s residence in a home other than our own this idea is fairly new to me, but makes a great deal of sense. For the past 17 years my “mothering” role has included being an advocate, a nurse, a diagnostician, an ethicist, a human resources manager, and a case manager in ways that are generally not required of the typical parent. In many ways I see myself as a caregiver first, and a mother second. If I think about that for any length of time it will make me sad.
It also seems that in recent years our caregivers and nurses are the ones who tend take Matthew to the movies and his various evening activities while I manage the ongoing demands of Matthew’s daily life and care. In other words, staff often get to do the fun stuff with Matthew while I wash the laundry, manage his funds, advocate for services, meet with health professionals, and organize his staffing needs. I am the one who is with him constantly during illness and hospital admissions. These days the bulk of my time with Matthew is providing care, or managing that care when not provided by me. There are many times I wish it were different but I am only human and I can only accomplish so much in a 24 hour period. There seems to be little energy left for fun.
Like Mr. Brown has pointed out, it is beginning to dawn on me that once Matthew lives elsewhere and others take on those management and caring roles I will have the time and energy, perhaps for the first time in his life, to be Matthew’s mother first and foremost. To be sure, parenting any child involves elements of the responsibilities I noted above, but for extreme parental caregivers these roles reach the point where they can essentially replace all other parenting experiences. While Matthew lives at home and is primarily in my care my mothering experiences cannot be separated from these other overwhelming responsibilities.
As someone beginning to contemplate long-term care for Matthew I find I am increasingly attracted to the idea that others will be the one’s changing his diapers and managing his staffing schedule while I am the one who might take him to his evening activities and the movies. It will be my turn to have fun with him!