Raising a Child with Cockayne Syndrome
CS mom Lena Mai shares her truth
Rare Disease Awareness Month
Recently, on a Cockayne syndrome community Facebook group, parents were asked: “What does Cockayne syndrome mean to you?” Lena Mai, mom of Kian, had planned to write a short answer but instead drafted an essay, which resonated with many. In light of Rare Disease Awareness Month, Lena has decided to publicly share her personal reflections through Riaan Research Initiative.
Guest Post by Lena Mai
What does Cockayne syndrome mean to me?
My soon to be 5 year-old son Kian has a severe form of Cockayne syndrome.
When I first became pregnant with Kian, I wanted to be the mother of a little girl and imagined how life would be. Two close friends of mine have little girls and I imagined that all of our children would play together and become best friends. When I learned that Kian was a boy, I was a bit sad, but nevertheless full of excitement and looked forward to being a boy mom. I read books about parenting and raising children, informed myself about stages of development and how to support a child as they acquired skills.
When Kian was born, I knew he would be different but I thought we could handle everything. We started a lot of therapies, early intervention and special needs programs. But when I learned about his Cockayne syndrome diagnosis, my world was torn apart. Actually I decided to quit all of his interventions except for physical therapy and our daily life became much calmer and quieter.
I would be lying if I didn’t admit that there is a lot of sadness, pain, fear and desperation in our lives. And loneliness. But there is also so much joy and happiness. Kian teaches me important things like being patient, how to experience honest joy over the smallest things, flexibility, creativity and what is really important in life: being warm, well-fed, healthy, and feeling saved and loved. Kian has the most beautiful soul. He is always kind, has a pure heart, and is full of love.
Sometimes I see the little girls of my friends and I experience two feelings simultaneously. On the one hand, I feel sadness and wonder how life would be if Kian was a “normal/regular“ child and could play with them. On the other hand, I feel sorry for them in terms of all the restrictions society will inevitably impose upon them. They have to go to kindergarten or school and there is so much pressure to always perform and to behave properly. Then they go to music classes and sports classes and there again they have to be successful and compare themselves with others. The life of children in our society is so stressful, as are the struggles of growing up, and there are so few moments where they are allowed to just be the way they want to be. And then there are all the dangers in the world their parents worry about.
While I wish of course for Kian to be healthy and have the ability to make choices of his own, that is not our situation. And thankfully, much of Kian's day consists of cuddling, playing, laughing: in other words, doing things he wants to do, not things he has to do. There is no pressure on him, he can just be, unlike most other children. There is some relief in that. He loves massages, warm water, funny noises and bright lights. He can go to kindergarten but he doesn't have to. He can learn new things but there is no pressure. And I can fulfill all of his wishes without worrying that he will become a spoiled child who will have a hard time later. There is no future I have to worry about. He will not have to make his own decisions and take care of himself. It’s hard to write these words.
While raising Kian, I have lost friends and the relationships with some of my relatives have become worse. But I have met many great people and made new friends and I know who from my family really stands by me and who does not.
I have had to give up professional dreams and adapt my everyday life to his care. But I have found new perspectives and am now no longer so hard on myself.
I am very afraid to see him suffer and die and I don't know yet how I can live without him. I can’t even plan this summer’s activities because I do not know if he will be healthy enough. Then I worry he may not make it to the summer, and the thought paralyzes me to a point that I no longer want to plan for the future.
In the end though, I know we have people around us who will help him. And there are people who will help me. We are not alone. I am incredibly grateful for that. I am also grateful for every moment that I was allowed to have with Kian and will have until his time may come.
I also believe being able to feel honest gratitude is key to helping cope with life afterwards.
So what is Cockayne syndrome for me?
Unfairness, Sadness, Fear, Tiredness, Pain, Loneliness, Desperation, Devastation, Uncertainty, Stress.
Pure Love, Happiness, Gratitude, Acceptance, Strength, Personal Growth.
And a reminder that everything is fugacious.
Lena and Kian live in Germany.
To donate to Riaan Research Initiative and support our efforts to build treatments for children with Cockayne syndrome, please visit riaanresearch.org/support.
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