“I wouldn’t change you for the world, but I’ll change the world for you.” - Unknown
by Jo Kaur, Founder, Riaan Research Initiative
Before I became a mother, I always thought of Mother’s Day as the greeting card companies teach us: a day of flowers, a nice handmade card or song from younger children, a massage gift certificate or a spa day, chore coupons, maybe a nice, happy lunch or dinner out for mom, and of course self-care. So much self-care. In my mind, there would be endless mother’s days, each one full of gifts and trips, and fun, happy-go-lucky, carefree memories. Little did I know that when I did become a mom, not only would my Mother’s Days with my child potentially be dramatically limited (only 6 or 7 if the doctors are right and no treatments are developed), but that no greeting card company would even envision what I wanted or needed. What I really want for Mother’s Day - a treatment developed to save my son’s life - well there really isn’t a card for that, is there? No rare disease mom section at Walgreens or CVS: “Don’t worry, Mom, I’m strong and I’ll hang on as long as I can, until the brilliant scientists develop a cure. Happy Mother’s Day.” Or “Good news, Mom! A treatment is on its way. Happy Mother’s Day!”
Does Riaan, who is non-verbal and developmentally delayed, know it’s Mother’s Day? Will he ever? Probably not. For that reason, Mother’s Day is not as significant to me as it could be. If it’s nothing special to Riaan, then what difference does it make to me? I know some rare parents choose not to partake in this holiday for a number of reasons, the pressure of parenting on us is immense, and it can feel like it’s not really intended for families like ours.
Still, I think it’s important that this holiday not exclusively center and focus on the mother-child relationship between mothers of typically developing children, and/or mothers of children with more common or known disabilities (note even among these groups, there are so many mothers whose stories remain untold, lower income mothers, mothers separated from their children, incarcerated moms, mothers in war zones, etc). The mothers of dying or deceased children who have rare genetic disorders or childhood cancers are rarely added to this equation. Yet our stories need to be told. They’re critical. The love we have for our children, deeply profound. The things we do on a daily basis are nothing short of herculean - managing their day-to-day care to advocating for our child’s wellbeing at the doctor’s office, to becoming rare disease crusaders, to pushing a research ecosystem we are completely unfamiliar with to develop treatments for a disease that impacts only a few hundred children or even less, that few even care about. Well these are no easy tasks. To riding out trauma after trauma, surgery after surgery, emergency after emergency, and trying to keep our child(ren) as happy, healthy, and safe as we possibly can, despite all the processes we cannot control, both external and internal.
In addition to treatments and our children’s prolonged health and wellbeing, I think for the actual day, what most of us rare moms want - probably not too different from every other mom - is acknowledgment and appreciation of what we uniquely face and rest. To know that our children are safe and taken care of for a short while so that we can rest. But what is rest to us? Is it sleep? Is it lounging on the couch watching Netflix? Is it a massage? I don’t think I’ve felt a moment of actual rest since Riaan was born, the days are all-consuming with him, and have become even more so since the diagnosis. I’ve never worked harder in my life. Maybe it’s writing in a journal, maybe it’s taking photographs, maybe it’s taking a walk on the beach. Whatever it could be, maybe it’s important we get the time to engage a few minutes (or go super big, an hour) to ourselves.
But I know that’s easier said than done for most rare moms, especially ones who are single-parenting. There’s no time or opportunity to look away. I don’t know about you, but for me, the most exhausting part is not taking care of Riaan (as hard as that is, it’s truly a blessing, every moment), it’s everything that comes with his diagnosis. The system is not designed to make anything easy for rare families. Between the doctor’s offices, the many specialists, dealing with insurance companies, and early intervention or school programs, it’s hard to survive and thrive even if you’re a super advocate.
Imagine if we could all have access to a FREE super advocate who could help navigate and manage these complexities for us. Imagine if we only had to go to one place to obtain treatment for our children instead of many different places (for instance, in the UK, thanks to the work of the organization Amy & Friends, they have a Cockayne Syndrome clinic where children can meet all the specialists they need to see in a day for regular check-ups). Wouldn’t that be a gift?
But I digress. Rare moms are often called super heroes, and yes I believe that is accurate. But do super heroes get to rest? On Mother’s Day, many moms rightfully talk about the importance of self-care, as I had mentioned earlier. Yet I have never met a rare mom, unless she has significant resources and even then, who is truly able to engage in self-care. The responsibilities of our role are too immense (some of us are taking care of children who cannot talk, sit, stand, walk, feed themselves, and will never become potty-trained), there is no time for ourselves, even though it’s important we make this time. It’s necessary for our health, and for us to be stronger parents and advocates for our children. It’s something I struggle with - I haven’t enjoyed self-care in years. Any time off is used for sleep, and I don’t consider that self-care per se, that’s just a daily necessity. Maybe this Mother’s Day, I’ll try to find some time to make some dramatic changes, and incorporate some rejuvenating relaxation and contemplative healing into my life. At least I’ll think about it. Maybe you will too? Maybe you already do?
Anyhow, as I set to exit this post, I think of sea otter moms who often keep their newborn pups dry and warm by carrying them on their bellies for long periods of time. There are so many incredible stories across the planet of animal mothers doing everything they can to protect and ensure the wellbeing of their young, even when it seems impossible, even when the dangers are rampant and extraordinary. It turns out we’re not the only super heroes moms around. In the larger sense, we can feel a little less alone.
Whatever this day does for you, whether you observe it or not, hopefully you experience many moments of peace and hope. And that the love you have for your child or children fills you with the strength and fuel of a thousand suns, to keep going, to keep fighting, no matter the circumstances.
Happy Mother’s Day, Rare Mamas! You are the absolute best and greatest, but you already knew that. Still, I want you to hear it again and again.