Extreme caregiving has demanded that I look beyond myself and my own skill set to find others who can accompany and support me. It hasn’t been a choice. Not for a moment. My controlling, independent streak was utterly challenged as Matthew’s mother. I learned in short order that caring for Matthew is more than one person can accomplish, even his devoted mother. I needed experts, additional caregivers, and a supportive collection of family and friends, both live and virtual, to be able to live this life with any kind of grace. I had to share my life, my home, and my family with the greater world to be able to care for Matthew adequately. I will add that I am one of the lucky ones. My life is filled with amazing people who journey this crazy difficult life with me. Over the years, while I may have felt alone, I never have been.
Those who know me know that I resist the tendency to romanticize this journey of caregiving. This is one of the very few moments where I will do so.
Several years ago, as part of my studies in theology, I was required to write a paper about salvation. You know, that concept that is a central aspect of the Christian faith. Here is an excerpt of what I wrote. Community features prominently.
Once a month I have coffee and muffins with four women. All of these women are raising a child who is considered profoundly disabled and medically complex. These women understand the extreme stress, exhaustion, and uncertainty of raising a complex child. When we meet we collectively celebrate the uniqueness of our children, our resilience, and the resilience of our families and marriages. We celebrate the hard won victories and support one another during the inevitable moments of sadness, anger, and frustration. Sometimes we just drink coffee. These women are my personal salvation. ….They “get it” in a way that someone who has not walked a similar journey cannot. But more importantly, they show up and walk the journey with me. Always. For me, this group mirrors how Jesus provided and provides salvation. He “gets it” because he chose to journey with humanity as one of us. He lived in solidarity with humanity with whom he shared joys and suffering. I find God in the actions of my community. I find salvation in solidarity; it is in the “walking with”.
So there you have it. The person who openly and actively resists the quest narrative of spiritual transformation as the overarching narrative of caregiving writes a quest narrative of caregiving. But just this once. For me, community has been the gift found on this extreme journey. I think the catch, for me, is that community doesn’t necessarily make the journey easier. Caregiving is still pretty darn difficult and I don’t want that part of the narrative lost, as it inevitably is when we veer into a quest narrative. It is just that company along the way makes any path, particularly the difficult one, bearable.