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.
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 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 spoke again about our kids. Susannah, Eleonora, Lhassa.
Have you read Part 1 yet? Read it here.
Part 2 – Luke
By Anouk Lanouette Turgeon
“Let yourself be in the emotion, go through it, give in to it, experience it. You begin to go toward the emotion, rather than just experiencing the emotion coming toward you. A relationship, a dance, begins to develop. Then the most powerful energies become absolutely workable rather than taking you over, because there is nothing to take over if you are not putting up any resistance.”
At some point—during the first michelada I think, the order of nachos had just arrived—Luke told us that seeing older kids with KIF1A at the conference meant a lot to him. It was both encouraging and difficult for him because it triggered several questions in regard to Susannah’s future. Will she be able to do this or that at whatever-age, will she keep these skills until then? What will her condition be in her teens? Will she be in a wheelchair at Ellie’s age? Will she live until that age?
When he formulated that last question understandably he became emotional, his voice sounded strangled for half a second. And something crushed inside of me.
I wanted to hug him and say it will be OK. Like one would do to reassure a child who hurt himself or who is not feeling well—you’re gonna be fine, I’m here, nothing can happen to you, I am stronger than the monsters in your nightmares, I will chase them away, I would never let anyone hurt you.
Although I would have wanted more than anything to be able to say that, of course I couldn’t. Because it would have been a lie. And I wouldn’t lie to this guy about the most important thing in his life, of course.
I don’t know what lies ahead for Susannah. Or for the other KIF1A kids. I don’t know if Sus will grow up to become an adult, I don’t know how fast this dreadful disease will destroy her brain or if it will be stopped at some point. But there is one thing I know for sure so I looked at Luke and almost chided him saying: Listen, dear, you ARE changing Susannah’s future. Every day of your life—may I remind you that?
I don’t remember exactly what he answered then. Maybe it was at that point that I saw tears in his eyes. And he gazed away. Absentmindedly looking at his hands. His plate. His drink.
Actually I think he mumbled “I know… but.”
Then silence again.
“But” meaning maybe we’ll run out of time before we get a cure. Maybe it will be too late for Susannah.
Right there I wanted to scream. And cry with him and liquefy myself forever in that Mexican restaurant.
But I stayed in mute control—I do that better than most people—and had another sip of that spicy Mexican drink. Very tasteful and refreshing. The thick curtains demarcating our section of the restaurant muffled the tableware noises and bursts of voices we could hear from the other side. It was only the four of us in there.
Then someone—it was Emma I believe but I think we all became one soul, one will and one mind at that point in time for a short moment—said that it is indeed so hard to think about the future. We wish we would be able to stay in the moment. Here and now. It is not always possible.
You also say that to yourself quite often, you reading this, don’t you? That mysterious and fleeting here and now. Where is it gone again? Why does it keep escaping us?
Luke said he was bad at that. Being in the here and now. Very bad.
I know. We all are, aren’t we? Human beings are lousy at focusing on the “here and now.” I don’t know how many decades of yoga or mindfulness meditation it would take to become an expert in staying in the moment, but basically it’s not the way our minds work. It is at best a constant struggle, necessitating daily training. I force myself back in the moment everyday, several times a day. Otherwise I would have gone mad long ago. But I also fail daily.
So let me say this again here so you shall never forget, Luke: you are changing Susannah’s future. Hers and many other children’s future. Science has its constraints and limits, yes: hope and love don’t, they are boundless. And when passionate scientists meet knowledgeable and restless parents like you, anything becomes possible. Nothing is written or bound to happen or predetermined, if you ask me. The future is being re-created every day depending on our decisions, our actions, our intentions. So with the ongoing research efforts and already encouraging therapeutic results, what used to be a darkened sky is gradually turning into a new dawn.
And you know what, my dear friend? I can’t promise and I won’t. But I dare to imagine Susannah is going to be OK—that is what my gut feeling tells me. Because her father is—her parents are—the strongest. And they are making the impossible happen. Because Sus herself is one tenacious and mighty girl. And she is empowered by your love, as you are fueled by hers. I don’t know how bad it will get before a treatment is developed to stop the beast. Again I can’t promise, I won’t. But I sense Susannah will live. Live long enough for you to become old and slow down a little. Live long enough for you to dance with her at her wedding. Yes—and by the way dancing in a wheelchair is not a problem. Would you believe that? Please do. Dare to. You deserve it. And realistically I think you ought to.
And do something else for your own sake will you? Throw the worst-case scenarios away. I know it is difficult, I know your life sucks, I feel you 100%, I know that watching your strikingly beautiful little warrior lose her cognitive and motor skills is scaring you to death and destroying your peace of mind everyday. Every hour of every day. Every minute of every hour. So cry all you want, whenever you have to, I know you need to. (Or hit a punching bag or pound on a djembe or scream at the top of your lungs or smash a baseball bat across a tree or go run 10 miles at full speed or finish that whisky bottle or take that plane to the end of the world, whatever.) But don’t abandon your mind to nightmarish scenarios anymore. It is time for you to stop being scared all the time. It is. Really.
Work is not over yet, we have to stay focused and relentless. But be confident that you—we—will make it. In a few years from now you could be looking back on your warrior’s path and be able to say you did save your girl. You. Yes. I mean you and Sally. And all of us together, but you anyway.
And you know something else? I need to apologize to you—to both you and Sally. This is where I tell you my secret number 2.
When I joined the support group in 2017 at first I was tempted to think that you were a bunch of incurable dreamers living in the illusion of a cure for this disease. I thought the treatment might come someday, in a few decades maybe, but that it was unrealistic to hope that it would actually save any of our kids. And I didn’t believe it was possible to draw the interest of any research team to this condition touching only a handful of children in the world.
I also realized Lhassa was much more seriously affected than most kids with the mutation—I felt isolated in this community where very few families share our reality and concerns and maybe I didn’t feel compelled by the mission towards a cure since I knew my little girl wouldn’t live very long anyway. So I wanted to focus on her wellbeing, not pour more medicine into her and make her a guinea pig. That is still true, you won’t change that, I mean it will be too late for Lhassa when we find a cure. She is too fragile, she doesn’t have much time ahead of her. But for most of the KIF1A kids there is still time. And the therapeutic solutions are just around the corner. The science exists. The next steps will be crucial.
Hence now I know you are one of those dreamers that actually do change the world. The kind of guy that is driven by love so strongly that he accomplishes miracles. (Says the atheist.) You are not alone, of course, I hear you answering that. But you were the ignition point and still are the fuel of this initiative. Your love for that sublime little girl of yours is what gets you going, I know. You would move mountains for her. And YOU DO.
So let me send you all my admiration and gratitude for having showed and convinced me that anything is possible.
I will move that mountain with you. I will do it with or without Lhassa. With and without her.
— — —
So that was the day my hero became my friend.
Or maybe it was also the day my friend became a hero. De novo.
He put a knee on the ground for one sec, took a deep breath, swallowed back his tears, stood back up, aimed at the sun falling on the horizon and headed forward.
With all of us beside him.
Looking for something to read next? Check out this powerful piece by Luke on the KIF1A.ORG blog.