Christian is married and lives in Berlin. He's a young father who has ALS. His four inquisitive children ask difficult, but meaningful, questions that deserve, and get, honest answers. Christian's open, relevant responses are a gift to all of us.
"The last leaves of the maple tree in front of our balcony are falling. Life in slow motion. Winter is coming, it has no other choice.
What arises will pass away."
Echoes in my head. Yesterday, Wolf, my eight year old son, asked me calmly: "Do you believe it will be a long time until you die?" We have always been honest with the children about ALS, without unnecessarily scaring them, emphasizing that they are always wrapped in the warm and safe blanket of a big and strong family.
"So? I really don’t know, I hope for a long long time..."
"Would you rather have a brain tumor, papa?"
I have to laugh, children are so beautiful in their innocent directness. So? Honesty again: "Depends on the type of brain tumor…"
"Like the one Colin has?" (Colin is my younger brother who has a brain tumor and has beaten all prognostic odds given to him so far and counting – rock on little brother! )
I want to be with you as long as possible.
I take a walk with Silke through shining autumn colors. we talk about everything.
We eat kebobs at a Turkish bistro. The TV is running. I can’t avoid staring at the pointless flickering array of unquestioned youthfulness. I have avoided thinking about death for too long.
And something in me is tipping over.
And I cry. I sob. I cannot stop. Silke holds me. I don’t want to die.
"This is life."
Read more insightful blog posts by Christian at "Love and Work"https://workandloveblog.wordpress.com/2017/11/07/23/
Please listen to the following ALS Worldwide Podcast for further suggestions on talking with children about ALS/MND.