A Letter from Mum to Little Eleonorka

My little sweetheart,

I spent a long time wondering whether I should share the letter I wrote to you as part of telling our story.

In the end, I decided to go ahead with it, because this letter is also part of what I am creating for you. In this letter, I wanted to express how I am coping with everything myself. To explain the feelings I experience knowing that you are ill, even though you don’t look ill at all.

When I was told your diagnosis, I couldn’t bear it, and I couldn’t believe it. I thought they had made a mistake. Surely, it wasn’t possible that you could be ill. And on top of that, with an illness that cannot be cured. Every single day, I ask myself WHY? Why must you, such an amazing and tiny little girl, carry such a heavy burden? Why must you be THE person through whom we discovered that there are carriers of this disease in our family, and THE person who will put an end to this disease being passed down through our families? And in doing so, “save” all the other babies who will be born into our families in the future.

I am so deeply saddened by all of this. I feel helpless because I wish I could take this illness away from you. I am angry because I cannot change any of it, even though I wish with all my heart that I could.

I am absolutely terrified for you. I am afraid of the day you start nursery, then school. I am afraid of the day you begin to navigate this big, unfair world on your own—a world that doesn’t ask anyone for permission or stop to consider anyone’s feelings. I never want anyone to hurt you. I will do my best to raise awareness so that, in the future, other children will accept you the way I hope they will. So that they will understand that even with this illness, you are just a normal little girl. But what does normal actually mean? Is there some universal definition of what is normal?

You are still so tiny, yet you have already had to go through so much. And yet, you are still smiling, strong, and so determined.

While we were staying in the hospital, someone visited me whose words I will never forget. He came to see me and thanked me for taking your life firmly into my own hands and, in doing so, saving you. Then, he added:

“We need to realise that the illness Eleonorka has has been a part of her from the very beginning. Just as her curly little hair is part of her, so is this illness. Don’t be afraid that she will ever feel different or strange. She sees herself as completely normal. For you to stop suffering, you must also learn to see her illness as a part of who she is. Once you accept it that way, you will feel a sense of relief.”

And I am working hard to get there. It takes time. I am trying to see this illness as a part of you. Instead of putting my energy into fighting against the illness, I want to devote all my time and strength to YOU.

I LOVE YOU.

Mum