On Grief, Support, and Suicide

Trigger Warning: This post discusses suicide

by Jo Kaur, Founder of Riaan Research Initiative

I was heartbroken to learn that a wonderful mother of a child with Cockayne Syndrome recently killed herself. I can’t stop thinking about it. I don’t know her and I don’t know the exact reasons why she took her life but her child, a beautiful boy - only a few years older than Riaan - died late last year. The grief we parents face is beyond measure and many of us lack support systems to deal with the trauma.

I never interacted with her but I knew of her through the private Facebook groups we are on for Cockayne Syndrome, which are organized by the support groups for this disease. Her little boy was absolutely beautiful, with a smile that could soften the hardest soul. Without disclosing any confidential information about her or her family, I could tell from her posts that her little boy was her world, that she loved him more than anything, and worried about him incessantly (as we all tend to do about our children). Oh the smile on her face in pictures of her hugging her baby, it stretched from ear to ear, her eyes glowing with an infinite love that only a parent can understand. With almost every new symptom that her son faced due to the progression of his disease, she graciously sought advice from other parents in the group, perhaps searching for comfort, information, and even hope. She spoke of not imagining life without her little boy, especially as the end came near.

I didn’t know her but I knew her. I knew her grief. I knew her pain. I knew her anxieties. I knew the thoughts she had, the fears, the helplessness, as she watched her son suffer, and then tried to imagine a world without him as he grew sicker and sicker. And then she experienced the greatest sorrow in all of human existence: actually losing her little boy. This too, is my greatest fear, and likely that of other rare disease parents (or any parent). I cannot imagine living without my Riaan either. The thought shatters my soul, the essence of my being, it paralyzes me with a cold fear so primal I am frozen with trauma and pain by the mere thought of it. So in that sense I know her, I knew her. I understand her.

I also want her to know that she mattered. May the winds of the universe and the great beyond bring this message of love to her.

I want her to know that she was not just another CS mom, lost to the waves of grief that consume us all, her promises and dreams for her son and their life together stolen by a cruel disease that impacts only a few hundred people in the world, so ultra-rare that you rely on a handful of strangers from around the globe for support because no one else quite understands what you’re going through. She was a person - a human being - and a mother, who loved her son so deeply, and felt a pain so cruel, so terrible, a pain that no one should have to endure. I want her to know that there are souls, maybe thousands of miles away, who see her, who see her son, and who care, about their story, their legacy, and who want to do everything in their power to end the suffering of other families in this situation: whether it’s providing support or helping to build treatments so that no one else has to go through this. She mattered, this mom. Her son too, he mattered.

I wish we all could have done more for her. It’s hard not to feel like we - the community - let her down. If we don’t look out for each other, who will? But what is support, and how do we best give it to grieving parents in our situation?

I think support looks different for everyone, and it has to, because we all have vastly different needs and lives. For me, I’ve found some solace in personally getting to know some other CS families outside of the Facebook groups, especially parents who share some of my views on how to approach handling our children’s diagnosis. For some families, practicing a lifestyle of endless optimism and making the most of their time with their children is the way to go. For others, like myself, it’s a balance. I think we can acknowledge we must enjoy every minute with our child but also recognize that it’s hard to do because we live with this anticipatory grief of them potentially suffering and passing sooner than we’d like, and well it sucks. The thought of our child suffering and dying sucks (the understatement of the century). Can we just admit it sucks? It’s more than any person can bear. No one is built for this kind of life.

Even in terms of formal support, especially in the rare disease community, we attempt a one size fits all solution and it doesn’t always work. On top of the grief of anticipating or actually losing our children, we have to remember that CS and other rare disease families may suffer from a number of other issues: economic, housing, and medical challenges; marital issues; domestic violence or other safety concerns; lack of support from family, friends, or broader networks, to name a few. There are so many stressors in life that do not suddenly disappear with a CS diagnosis. On top of that, all of us come from different cultural and religious backgrounds. From North America to Asia to Europe to South America to Africa to Australia, from Christianity to Islam to Hinduism to Judaism to Sikhi to atheism and more. We all have differing views on grief, death, and the afterlife, from heaven and hell to reincarnation, to oblivion, and more. Some of us may completely retreat after experiencing grief and loss; others may actively seek out people and begin to heal from the condolences offered by others in the community. Acknowledging and embracing these differences among individuals and families is critical to providing constructive support and promoting healing, in my opinion. Pretending people with differing beliefs do not exist, especially in the case of grieving parents, simply adds to the pain, loneliness, and isolation parents may feel. These are complicated, deeply personal topics, and yet support groups often focus exclusively on a Christian-centered view of grief and the afterlife, which does not always feel like an inclusive (or supportive) environment for those who don’t share these beliefs.

Then there’s the matter of finding help for people when they are actively grieving. The most effective professional solution I have seen proffered is a grief therapist; however, it can be challenging to find one you can connect with on your own. Grief can make the process of finding a therapist cumbersome, especially by yourself, and not everyone can afford one. (By way of example, I still have been unable to find a grief therapist for myself). Even though our families are scattered all over the world, I think it would be incredible if our support communities could offer immediate grief counseling services - with proper linguistic, cultural, and religious competency - at two different points: at the moment of diagnosis, and if/when a child passes. Even if only for a few weeks. What a difference I think that could make at these two critical traumatizing points in our lives. We seem to offer each other a lot of support while our children are alive, even if primarily through social media, but some of this feels like it disappears as soon as our child passes. Another idea is a potential community mentorship program so that everyone has at least one person they can connect with at their lowest points of grief, someone who can check up on them, especially if they do not feel comfortable sharing their angst on social media.

There are some organizations in the United States that offer counseling and bereavement services as well although the list is not long and isn’t enough to meet all of the needs in our communities. Still, I strongly encourage my fellow grieving and bereaved parents to seek help, as needed. Here’s a (non-exhaustive) list of some of these organizations:

Courageous Parents Network

Just Enduring

The Compassionate Friends

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I don’t have any easy answers but I do know that many of us carry an open wound, gushing with pain, and some of us need a lot more help to stop the bleeding. I worry that what we’re doing is not enough. It’s also difficult to share our trauma and pain with the people in our lives, who are not part of the rare disease community, and that also adds to the burden we feel. To the people in our lives who may not know, but who care and want to help, be patient, ask us what we may need, and try to help us get there (whether it’s help finding a grief therapist, some rest, babysitting assistance, a friend to talk to, hearing stories about our children, or even a nice warm home-cooked meal).

As we continue on this journey to build treatments for Cockayne Syndrome, I know I’ll always carry this mother and her son’s story with me. They deserved better. And I hope that, wherever they may be, mom and son have reunited and are wrapped in the glory of the eternal love of the divine.