What Is There to Learn About Modern Motherhood?

The heat was blazing as Emily Bloom helped set up a tent where a friend would display her paintings in a Michigan art fair to begin the next day. Hot and still, the weather brought temporary discomfort yet a sense of assurance that the fair would not be disrupted by storms. 

Then, in the night, clouds burst. The wind grew forceful, destroying tents and hurling displays into the street. “The meteorologists,” Bloom writes, “had reported only a 30 percent chance of rain.” 

Bloom tells this story in her memoir, I Cannot Control Everything Forever. It serves as a metaphor — a lens, perhaps, is better — for her reckoning with motherhood and disability in the lives of those she loves most. Bloom’s older brother, Alex, is intellectually disabled. Her husband, Evan, and daughter, Willie, have congenital deafness. At 13 months old, Willie was diagnosed with type 1 diabetes. 

What are the odds of all of this occurring? What is the value of a weather report — or genetic testing — if the skies may open up regardless of prediction? Where does the maternal instinct to predict, protect, and prevent derive from, and why does it often carry so much guilt with it? 

These are the types of questions that Bloom wrestles with throughout her memoir. Drawing upon science and art, and with keen insights into the history of disability, she sheds light on the challenges and delights of parenting an exceptional child. Bloom spoke with Common Good about the relationship between information and control, the economic struggles of disability, judgmentalism in motherhood, and the glimmering joy of living in community with disabled people. 

Your exploration of the relationship between information and control is a profound one. I, too, am the mother of a child with a disability and I regularly wonder if it is my duty to dig up all of the science I can, spend my days immersed in the present moments of my son as he is, or strive for that elusive in-between. How have your thoughts continued to evolve on the relationship between information and control when it comes to parenting a child with multiple disabilities?

I love your description of the “elusive in-between.” That’s definitely what I’m striving for too (rarely succeeding, I’m afraid). One thing that I’m slowly learning to do is to approach science as descriptive rather than prescriptive. Learning more about a diagnosis or pursuing testing can describe things or give a new language to explain something about your child and sometimes point towards treatments, but it’s not a blueprint for the future. When we, as parents, start treating science like a crystal ball is when I think we get ourselves in trouble. 

The memoir’s title, and many of the themes throughout the book, come from works of art. How has visual art been a companion to you in your motherhood journey? 

For the first year of my daughter’s life, I would tuck her into a baby carrier and walk through museums with her. It was something I could do during the day when everyone else was at work. She loved the feeling of walking around and would fall asleep in the carrier, so it was a great combination of time with her and time with my thoughts. When I started writing the book, those images from the museums I visited were really vivid to me. I was writing during the pandemic and feeling shut-in and cut-off and so I think there’s an element of nostalgia for a moment when I could be a mom and be in the world at the same time. 

I Cannot Control Everything Forever situates your family’s story in a historical and scientific context that considers art, philosophy, and issues of justice. One such issue that arises several times is the economic intensity of disability — the need for good health insurance, the ever-fluctuating costs of medication, and the lack of access many people have to financial support, for example. If someone is just beginning to think about how parents of children with disabilities face budgetary strain, what would you want them to understand? 

When my daughter was diagnosed with diabetes just after her first birthday, I quit my job to care for her. Every day after that decision, I woke up thinking about what I would have done if I was a single parent. I couldn’t care for my daughter and keep a job. No daycare would take her; she needed insulin injections five times a day, and daycare workers, at least in New York, cannot legally do that. Even with two incomes, we couldn’t afford a full-time nanny with a nursing degree or one who felt comfortable monitoring a diabetic baby. I had a spouse who could support us on his income (though not indefinitely), but what if I didn’t? 

It made me think more about my mother’s experience — she was a single mother with an intellectually disabled son. Her saving grace was a neighbor, an older woman, who watched my brother for free. But there are so many parents who don’t have a spouse or a devoted neighbor or can’t make it on one income. The financial costs of disability and illness in our country right now are staggering. These include the high costs of medication like insulin, the costs of full-time aide workers like those my brother requires (who are themselves grossly underpaid), and the costs of ever-advancing biotechnologies that are creating a bigger division between those who can and cannot afford them. These problems are only getting worse and require real political willpower to begin to address. 

When describing your desire to write something personal while your parents watched Willie, you recall thinking: “To do so now, when someone needed me so completely, seemed like the most selfish thing I could possibly do.” How did you reframe that desire (or did you?) in order to create this memoir? 

Other women writers have described feeling a conflict between parenting and writing, especially in those early years. Pearl S. Buck describes her daughter, who was intellectually disabled, stuffing her typewriter with clay. Adrienne Rich says that as soon as her attention slightly shifted away from her children and towards her writing, they would immediately pick up on the shift and start acting out. In those baby and toddler years, everything feels like a zero-sum game. Taking a shower can feel like a betrayal. 

But as my daughter got older, I came to see that immersing myself in something creative made me feel like more of a whole person and, I think, made me a better mother. But I don’t want to sugarcoat the fact that this balance was not easy to achieve and that it only came as my daughter grew and we found a better sense of equilibrium. 

I found myself nodding along when you described a scene with an audiologist in which you had to restrain yourself from explaining what kind of mother you are. It prompted me to recall a time that an occupational therapist who was working with my son asked if I ever left toys around on the floor. I was mortified, assuming she was going to call me out for leaving tripping hazards around when I was the mother of a child who had impaired gross motor skills. Instead, she told me about a family she worked with whose similarly-abled child was growing by leaps and bounds because the house was always a mess and he had to be nimble. 

Your story and mine both led me to think about the ways that, as mothers, it seems as though we are continually judged, so much so that it can become the lens through which we see ourselves. How do you challenge those critical voices?

The judgment thing is so pernicious! We don’t want our kids to fail, of course, but I think the problem is that we’re so quick to think that we might fail them. One thing that I wanted to do in my book was to give some historical grounding to that feeling of being judged all time and judging ourselves all the time. I really don’t believe that either you or I are inventing this feeling of observation and judgment. 

If you look back to the early 20th century in the U.S. and Europe, you see a perfect storm of factors that are making mothers the seat of all judgment when it comes to their children. You have the rise of Freudian psychoanalysis (moms cause all manner of problems there), ideas of scientific motherhood develop out of eugenic theory that put the betterment of the human species on the shoulders of mothers of “good stock” raising “better babies.” And you have research on childhood development in the social sciences, positive and beneficial as this was in so many ways, focused primarily on the maternal role (making moms the forever default parent). It’s not that moms weren’t important before the 20th-century, but we didn’t have a landscape where their decisions bore the kinds of consequences that we attribute to them today. 

Your relationship with your brother, Alex, powerfully shapes the way you describe your thoughts on disability and how you conceive of parenting a child with disabilities. As you reflect on his and Willie’s roles in your life, you describe the difficulty of trying to explain that two things are true: You do not identify as disabled and “disability ripple[s] through your life … this adjacency ha[s] shaped every contour of my personality and my sense of the world.” How might the world be a better place if more people more intentionally built relationships with people with disabilities?

I wanted to write a multigenerational story about disability because it is something that I hadn’t read before. In a lot of parent memoirs about disability, the story begins with the shock of diagnosis and then the parent learns to see the world through the lens of disability, to find joy in difference, and to participate in disability communities. As a sibling, this wasn’t my experience. Alex was always Alex — he was entirely his own person and his personhood predated mine by about a decade. I grew up going to potlucks and therapeutic horseback riding and bowling for children and adults with intellectual disabilities. 

I highly recommend this childhood — it was a lot of fun being a part of that world. Many of my earliest memories are of being around Alex and I formed a lot of my sense of identity through the joys and challenges of being his sister. What came as a surprise to me later on was that this knowledge didn’t necessarily prepare me to be the mother of a child with disabilities. There is a different kind of pressure and judgment that parents face that was not part of my experience as a sibling. Recognizing this difference was another reason that I wanted to write about being a sister and being a mother in the same narrative. 

And in answer to your last question, the world would be a much better place if more people were involved in disability communities. I work with a group of students right now who volunteer at an adult day care working with seniors with disabilities, and it not only teaches them about creating accommodations and treating others with empathy, but they genuinely leave every day happier. They learn new ways of experiencing joy and it is a beautiful thing to witness.   

Many of Common Good’s readers are leaders or volunteers in faith, educational, and community organizations. What would you like to tell them about how they can support families for whom disability is part of everyday life? 

This is such a good question. My friends and family who have read my book have sometimes told me that they felt like they should have done more to support me. But I didn’t feel that way at the time, and I still don’t feel that way. I had a lot of support and here’s what it looked like: checking in with me after a tough diagnosis; cooking meals after a hospital stay; watching the baby while I showered or worked or shopped (and long after a diagnosis or period of urgent need); helping me reorganize my drawers and closets to accommodate new medical supplies; taking me out for drinks or meals and reminding me that I had an adult life with adult friends; and learning new skills (like American Sign Language or how to give an insulin shot) so that my husband and I had a bigger village to support our child. 

And now for my favorite question: What do you want to tell me?

When I started writing this book, I didn’t realize that I was writing a memoir. Early drafts were written in third person (very grateful to the friend who talked me out of that). But once I realized that I was writing a memoir, it made me reflect more on the importance of memoirs about parenting and memoirs about disability. Reading shouldn’t necessarily supplant listening to real people in our lives and asking questions, but it’s a wonderfully efficient way to build empathy and understanding. 

One of the hardest things about navigating disability, either as a family member or for ourselves, is the fear of the unknown. Reading and recommending stories by people who have been there can build familiarity and recognition. Many films and novels tend to sensationalize disability — using it as a tragic plot point — but memoirs are more likely to show people having good and bad days, coping, moving forward (and sometimes back), and learning to thrive under challenging circumstances. So, I feel really grateful, in the end, that I came to write this as a memoir and I hope that it might encourage other people to tell their stories. 

 

This interview has been edited for clarity. I Cannot Control Everything Forever was made available on April 16, 2024, from St. Martin’s Press (Macmillan Publishers).