by Jo Kaur, Founder and Chair, Riaan Research Initiative
This past weekend, I sat on a panel on motherhood, where we examined the themes of mothering, how we felt when we first laid eyes on our child(ren), what it means to “mother,” moments that transformed us in our parenting experience, and the kind of support that we are seeking from others, among other topics. The Valentine’s Day weekend panel included diverse perspectives from women with typically developing children, a woman who had adopted a medically complex son with a disability, and me, a woman with a son with many disabilities who is also dying of a rare disease. The conversation was rich, compassionate, and thoughtful. I found this mix remarkable because we - all mothers with various experiences - could benefit from talking to each other. Too often, in the patient and caregiver advocacy community, we are siloed into our own groups: the rare disease group, the childhood cancer group, and then subgroups depending on a particular disease area. There is certainly a benefit to having deeper conversations with parents in similar situations but it is also important to be in conversation with parents of typically developing children. Just because we’re rare doesn’t mean we shouldn’t be part of a general panel on mothering.
As we began to talk about meeting our children for the first time, with the discussion flowing around concepts of a fierce love we had never known before, an innate desire to protect our children from harm, or even taking our time to fall in love with our children, we all acknowledged and reinforced that our journeys, reluctant or chosen, were all important and deserved to be shared. Still, despite this understanding among the panelists which I was grateful for, I felt a bit isolated, as I often do when talking to other parents. I don’t think this feeling will ever go away.
I compare being a rare disease parent and advocate to being an astronaut, traveling alone through the stars, with only a small but motivated crew, limited resources, and constant emergencies that we have to learn how to navigate and overcome. It’s an exhilarating journey because the love we have for our child(ren), colored by the limited time we may have together, makes for the most intense experience of one’s life but it’s also the loneliest, scariest, and most challenging. But for love, we keep pushing deeper into the unknown, in the hopes that we’ll find treatments.
I spoke about the fierce protective urge that came over me when I met Riaan, the profound, unconditional love I have for him that later transformed me into a fierce warrior, post-diagnosis, willing to work harder than I have in my entire life to get treatments developed for Cockayne Syndrome. I talked about how mothers of children with rare diseases or other illnesses/complex medical conditions can feel left out of the mainstream conversation on motherhood, which often centers the experiences of mothers of typically developing children. We have work-life balance issues too. Indeed, many of us transform from two parent working households to one parent working households to take care of our medically complex children. We don’t just lack a work-life balance, we lose entire careers and a source of income.
We also wonder how we can do it all. While juggling our rare child’s many therapies, doctor’s appointments, medical issues that rise up, we are also dealing with a wealth of other issues and complexities with our relationships, marriages, families, finances, raising other children, jobs, and of course the trauma of dealing with the anticipatory grief connected to our child’s terminal diagnosis. The bills don’t stop coming. The boss doesn’t stop calling. Some of us have to do it all completely alone, raising children alone, while trying to keep the family afloat. I think of mothers with even more layers of challenge and difficulty, such as those raising children with a rare disease in war zones, in extreme poverty, or while unhoused or detained.
Then there are all the feelings and emotions that come with our child’s diagnosis. I spoke of how guilty I used to feel after Riaan was born, when he was small and not growing as quickly, when he developed his cataracts. I felt like I had done something wrong, and that it was my fault he was not well. I talked about how one particularly transformative moment was when after Riaan’s diagnosis, I stopped comparing him to other children and let go of some (unfortunately not all, it will take time) of this guilt. I unsubscribed from the BabyCenter emails that gave weekly updates on what my child is supposed to be doing at a particular age. I stopped feeling like I was going to break down every time I saw a picture of a typically developing child shared by a friend or acquaintance. It took some time to get to this point but when I did, it was a relief.
Of course human beings as annoying as we are, I had a brief period where I then began to compare Riaan to other children with his disease, particularly children who were less severe than him, and had more skills and abilities. Not because I needed Riaan to do any of these things but to get a better understanding of the severity of his condition. Fortunately, I was able to stop this depressing dive down into the rabbit hole pretty quickly. While informative, it’s not helpful. Now I’ve shifted to focusing on what Riaan can do, and to try and make him feel as happy and loved as possible. It’s all and only about his happiness, his quality of life, and of course getting treatments developed in time.
I also spoke candidly about how I felt like my desired motherhood journey was being stolen from me. I love being a mother, more than anything in the world, and yet my only child is dying. Unless we get treatments developed in time, I will not get to see him grow up, or even go to elementary school, help him with his homework, go to movies with him, watch him play with his friends, go to middle school, graduate from high school, attend the prom, go to college, get his first job, and get married. Or even if he did none of these things, whatever his path or journey could be, I won’t get to see it. And I feel robbed, and it’s very painful. Birthdays, holidays, and everything in between can bring up complicated feelings, because they’re a reminder, as one rare disease mom so poignantly shared with us recently, of how we may not have this time next year with our children. I reflected on how scared I was at the thought of Riaan suffering, the endless hospital visits that may await us, how I don’t want to see him hooked up to wires, experiencing tremendous pain, leaving this world in a fluorescent clinical setting, surrounded by strangers in lab coats who will forget him as soon as he passes.
These kind of topics can be very challenging for people not going through this situation to hear but I was grateful that everyone on this panel was willing to embrace the awkwardness, the discomfort, listen to me talk about death and mortality, of pain and suffering, of the possible loss of my child. I also spoke about the type of support we need from the larger community: assistance with raising awareness about our children and their diseases, providing allyship and supporting our work to accelerate the development of treatments, keeping in mind that research often only moves forward in the rare and ultra-rare disease space based on the resources of patient groups.
In a way, I have become very overprotective of other mothers of children in similar situations. I know how hard it is to be a rare disease or special needs mother, and I want to send my love to all of you. To all mothers, but also to you.
Because we too are mothers. In every sense of the world. Our stories belong front and center, as part of the mainstream narrative. We are very much an integral part of the story of human mothering. Our stories belong in the same parenting magazines, and news articles. We’re not outliers. Mothers who are losing or have lost their children - we deserve a seat at the table. Don’t look away. Listen, love, and show us tenderness. Let us share our story, as often as possible. Spread the word with us. Be awkward with us.
I was very grateful to this panel of incredible women and mothers, and audience, who were willing to go there. Because when we come together, all of us mothers, with our fierce warrior power and our deep, profound love, we can truly transform the world, protect all of our children, and give them the lives they deserve, all the obstacles be damned. Happy Valentine’s Day!