KIF1A parent Anouk shares her reflections on loss, resiliency and friendship after meeting other KIF1A parents for the first time at the KAND Conference in New York City.
Part 1 – Emma and Rickard
By Anouk Lanouette Turgeon
“What I have learned with you now allows me to live without you.”
Richard Cummings (Michael, mon fils)
Saturday evening I had dinner with three beautiful people: Luke, Emma and Rickard. Three superheroes whom I knew only through Facebook and had never met in person before August 16th—at the first ever Family and Scientific Engagement Conference on KIF1A.
Luke invited us to dinner in a Mexican restaurant. Real Mexican food, not fake American-Mexican food, you know. We spoke about different things, books, favorite places in New York, Trump, immigration to Canada, politics in Québec, food in Montréal, adoption and in vitro fertilization in Sweden. Whitening stripes. Whatever.
Then we also spoke again about our kids. Susannah, Eleonora, Lhassa.
The Conference was intense, instructive and enriching from a human and scientific point of view, stimulating, rewarding. And exhausting. Especially for Rickard and Emma, as you may easily imagine.
So Emma and Rickard were tired and overwhelmed, yes. But I think they both needed to be there. With us. Their tribe. Family. They lost their child, nothing will replace Eleonora, but feeling they are not alone in their journey is probably most vital. They needed not only to share their story, but also to give and receive support, empathy, love. And to do something tangible in the name of Eleonora.
Emma said that it was a relief to be with people, outside of her day-to-day life, and immersed into action. Otherwise Eleonora is on her mind 24-7. Actually Eleonora is still with her all the time—I don’t doubt it—but I think what she meant is that she gets more air to breathe when she is outside of her “normal” environment. The void is—of course—immense; life feels empty without Eleonora. At the same time Emma is grateful for the time she had with her little girl. She has beautiful memories.
What helped her build those memories is that she focused and stayed in the moment, here and now, when Eleonora was alive. Hence now her memories are vibrant, vivid, perfect. We see it in her eyes when she talks about these moments. She is somewhere over the rainbow with Eleonora. She talks with a steady and low-key voice, sometimes a little shaky. Pain is never out of the way, true. But my feeling is she is making it. Surviving this inhuman tragedy.
This reminded me: in general life supersedes or transcends death. Life takes over. No matter what happens, more often than not human beings tend to choose life over death. Action over paralysis.
Our community is a great example of that—and it will become even greater.
Rickard spoke about the fact that he needs to keep on doing things for Eleonora; he still needs to be a father for her. These words struck me because I so know in every cell of my mind and body that it will be the same for me when Lhassa is not here anymore. So Rickard was here in the name of Eleonora. He was willing to come to New York to share their story, and now he not only accepts to keep on playing an active role in the KIF1A.ORG Foundation, but he wants to do even more.
This made me realize this other thing: as obvious as it may seem and as weird as it may sound, when your child dies, you don’t stop being the mother or the father of that child. You still are. You always will be. I could feel Rickard’s strength, willpower, energy. He has a lot of that. A part of him died with Eleonora. But a part of his angel girl will always live through him. Is still alive through him. And from what I can see, even if Rickard is forever broken and his life will never be the same, he is somehow also making it.
Emma and Rickard are both very strong. Still able to appreciate the beauties of life. To laugh. To open their hearts to new friendships, to express solidarity towards other families, and so importantly to take care of one another. I sense this is a key element in their resilience: their love for one another. It is palpable, deep, beautiful. It is their light and their strength.
This reminded me that fragility is sometimes the opposite of weakness. Their vulnerability is what will keep them going. It will open doors to new opportunities. It will continue to change their lives. Somehow this vulnerability keeps the channel open for some sort of communication with Eleonora. “Because we are also what we have lost”. This reflection is from filmmaker Alejandro González Iñárritu and it has been an inspiration for me for years since it may alleviate pain by stressing that we are not completely separated from those whom we have lost. We are still connected to them and they may inspire and feed us and continue transforming and enriching our lives.
This is where I tell you my secret number one: since Eleonora passed, I was worried that Emma and Rickard might not overcome their loss. The death of a child is the worst event a parent—a human being—may go through during a lifetime. We all agree on that. To see your child deteriorate and be able to do nothing about it. And at some point to have to let her go because you don’t want her to suffer anymore. I can’t imagine anything more selflessly painful. This is also the story of my life and sometimes I wonder if I will make it.
So before New York I was reading—like many of you I guess—Rickard’s posts about going to the grave every day. I think it’s perfectly OK. He may go on doing this ritual every day for the rest of his life and I would still think it’s OK. But I was worried this grave might become their whole world.
It led me to ask myself what is it that we call healing or recovery? When do we consider ourselves “OK” or coping or just barely surviving? I don’t think it’s possible to completely recover or heal when it is a child’s death we are talking about. I still think this is true. But now I am confident that Emma and Rick are making it. They are fragile. Emotional. In pain, devastated. And talking to Eleonora and remembering. The wound is deep, impossible to fix. They are accepting the pain and the void, not trying to deny it. They are able to talk about their loss and how they are dealing with their search for meaning now. They are also able to dream and take action for a cure for KIF1A. There are a few keys maybe. Let it out. Dream. Love. Do something meaningful. Go on.
Meeting with Rickard and Emma was incredibly powerful. The connection between us was instantaneously so deep and natural it gave me the impression that we have known each other for ages. Their resilience somehow gives me a glimpse of hope that I might be able to cope when Lhassa passes. Even if I will never completely overcome. I want to thank them again from the bottom of my heart for having traveled this far.
And I also want to say this: let’s be there for them, OK? Keep an eye on them, ask them once in a while if they are OK. Let’s do that with every parent whose child passes. They still need us. As much as we need them.
The story continues. Read part 2 here.