My Beloved Child

Norwegian original

”Isn’t she lovely. Isn’t she wonderful. Isn’t she precious …” *

My wishes for you are skinned knees and getting sunburnt. Exam stress and a broken heart. Not because I wish you harm, but because I with all my heart wish for you to live through every part of the life kids should live. I wish for a big fight over when you should be home at night after a party. Banging doors. I wish you to gradually tear away from me and find your own path in life. Friends, education, someone to love, travel. I want you to experience and live life in this world. I do not want you to rely on help and nursing, earplugs, closed curtains and painkillers. I do not want to be grateful that, at least, you are not yet dependent on a wheelchair.

I hate ME.

Klimt mor og barnBut you – I love you more than anything from here to eternity. It hurts to see you exhausted on the sofa after taking a shower. The huge task of the day, which you chose over going to Grandma’s for dinner. Maybe we can have dinner at Grandma’s tomorrow? While you still feel clean after today’s huge task.

ME is taking away your teenage years. Eighth grade. First love. Nineth grade. First home alone party. Tenth grade. The first kiss. Senior high…

ME is taking away life experience, school, a social life. Instead of being a young teenager in your best and most healthy years, you have the life of an average 80 year old. I hardly recognize my energetic and silly girl. The girl who learned how to swim at the age of four, played with the dog, enjoyed school and made friends with everybody.

Save energy to be able to take a shower. Then rest.
Save more energy to be able to wash your hair as well. Then rest.
Save energy to be able to sit at the dinner table. Then rest.
Save energy to be able to see friends and family. Then rest.
Save energy to be able to have thirty minutes of home schooling. Then rest.

Most of the time one if these activities is enough for one day. Some days you can manage more. See friends. Go to the movies. Stay an entire hour at school. Afterwards you have to rest. For a long time. And if you overdo it, you get sicker.

We never know what the day will be like until it is over.
All we know is: Rest first. Rest after.
Quiet. Calm. Live life slowly.


A big Thank you to @MEisnotCFS for proofreading the English Version.

* The Norwegian original has a quote from a Norwegian lullaby, which goes “My beloved child, how sweet you are, the best I have on Earth”.

The original was first published as part of a letter to the editor in one of the lagest women’s magazines in Norway, Tara.

Please share.

Dette innlegget ble publisert i Personal from parents of children with ME, Personlig fra pårørende og merket med , , , . Bokmerk permalenken.

4 svar til My Beloved Child

  1. hayley-eszti sier:

    This has brought me to tears. It must be so hard for a parent to see their child live with such an unforgiving illness. Thank you so much for sharing this.

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