En Anden Virkelighed

Om livet for os som familie, der pludselig står overfor en usikker fremtid, da vores datter, 4 dage før sin 4 års fødselsdag i 2012, diagnosticeres med en tumor i hjernen. Adskillige tilbagefald følger. Dette er vores Anden Virkelighed.

Med andre ord…

Jeg faldt over Traci McClead’s helt utrolig fint skrevne liste tilbage i foråret – little did I know, at den igen ville være så relevant. Den er på originalsproget – men jeg er sikker på, at I nok skal forstå den – ellers er Google Translate din ven – omend det ofte bliver lidt bøvlet oversat…

8 things you should know about parents of children fighting cancer

1. You do not know what I am feeling.
This isn’t a bad thing; I hope you NEVER know what I am feeling. I would never wish upon even my most hated enemy the cards, we have been dealt. I sat in a hospital room and listened to a doctor I had met 5 minutes before tell me that my daughter had the second most dangerous tumor he had ever seen. Those words will never sink in. Never. Unless you have been told, that your child is now going to be in a life threatening battle, where you will be making life altering decisions then no, you do not know what is inside my head and how my heart feels. And that is ok.

2. Please do not attack me.
It is hard enough to accept this fate without you waging a war on what my child eats, drinks, wears, what I use to clean, or how much they exercise. I promise that they aren’t eating McDonald’s every day or shoveling sugar by the spoonful’s into their mouth. I am not pouring roundup in their sandbox and we don’t sit under tanning bed lamps for fun. I may allow a treat once in a while because, let’s face it, she has given up enough, and I pick my battles on the account, that I have bigger decisions to make. That is my right, and you don’t get a say. Right now, I need a friend and I need support, not a critic. If you want to critique or judge how I raise my child with cancer, then you may do so in silence or politely excuse yourself as my friend.

3. Yes, I have heard your miracle cure.
You name, it I have heard it. From mystery berries to magic urine, it all has been presented to me in one way or another. As a mom of course I have researched every treatment possible. You can’t hear the words “Brain tumor” and not turn to the internet, medical experts, or nonconventional options. So when you see a mom standing in line at the grocery store with her beautiful bald child say to yourself, “This is not the time to repeat an article I read on the web during my morning internet browsing session.”
Just look at the child, smile, and then tell the mom how precious her baby is and if you really want to help, ask if they have a somewhere you can follow progress and post support.

4. Never ask “What is the prognosis?”
I answer this the same way every time. “I don’t know.”
Do you know yours? Why is this so important? Would you feel worse for me to know that my child might die in nine months as opposed to possibly early adulthood? The fact is that childhood cancer shortens your life span. By how much, it will vary depending on type of cancer, treatment plans, genetics, and well just downright luck of the draw. Treatment options buy time and can send the cancer into remission, but that does not mean the child has been cured. Many of these treatment options have side effects that will be lifelong and some can even cause secondary cancers years later. As a mom I now have to face this fact. I now have to wake up every morning knowing that I will most likely out live my baby. 

5. I am not as strong as you think.
Just because I keep my composure when most can’t does not mean, I have this super human power. Many times I have cried alone in the dark or in my car. I hide my pain in front of my children because I subscribe to theory and practice, that my daughter will draw her strength from somewhere and it should be from the person, who loves her more than anyone. She has seen me cry and we have cried together. Most of the time I can stay strong for her, but then there are times, she needs to see me sad, she needs to know how much I hurt for her. Just as I am strong for her, she is equally, if not more so, for me. The strength you see in me is my love for her shining through. Because of her love I am able to get through every day and no bad news is too much for us to handle together. We are a team.

6. Please do not feel sorry for me.
Yes, I my daughter has cancer. Yes, she has suffered a lot because of her cancer. But my daughter is AMAZING and she is a fighter. We are beyond blessed to wake up to her sweet smile and kind disposition every single day. Our house is full of joy and laughter. We spend our time looking for ways to celebrate life in any way we can. We do not need pity, we only want you to join us in spreading happiness to everyone you meet. If anything, you should feel anger towards the lack of funding for this disease and then help by bringing awareness to this monster.

7. We are not privileged.
In the years that my daughter has been fighting, she has been fortunate enough to be on the receiving end of some amazing experiences and gifts. As a family, we have been able to go to Disney World. She has been given expensive gifts, the latest toys, and more stuffed animals than one ever needs. We have been beyond blessed in so many ways but I would trade every trip, every gift just for her to have never been through this. In my mind she deserves way more. If you knew even half of what she has been through, you would feel the same way.

I have had people tell me how lucky we are, that we get to go on these trips and I think to myself, “I am not sure lucky is the right word.” If you were given the choice between a healthy child that can see and isn’t cognitively delayed or a trip to Disney world, what would you pick? That’s not to say we aren’t extremely grateful, because we are beyond appreciative of the opportunities we have had, but seeing Mickey Mouse is a small consolation prize in comparison. So when you meet a family that has a child fighting this disease remember not to be jealous of where their Make A Wish was spent, because I am sure they would happily send you to Hawaii as long as you take their kid’s cancer with you.

8. We are still human.
This is probably the most important thing for you to know about a parent of a child fighting cancer. I cannot say I am the same person. Over the years I would hear a lot of parents say “I’m still the same person as before. Just because my child has been diagnosed with cancer doesn’t mean I have changed.” Lies. You will forever be changed, but it doesn’t mean your friends have to part ways. I cannot stress enough, no matter how much we have changed, we still want to laugh, we still need a shoulder, and we still want to be there in return. We just want our friends to accept us as we now are.


7 replies

  1. Er uden ord, det kunne være skrevet af dig. Vil bare sige, at jeg elsker jer så usigeligt meget. Kram svimse.

    Sendt fra min iPad

    > Den 7. dec. 2016 kl. 09.59 skrev En Anden Virkelighed : > > >

  2. Det er rigtig fint skrevet og en god hjælp til os der ikke ved hvad f.. vi skal sige eller gøre – ja jeg har spurgt om prognose – kan jeg godt se. Håber bare du ved at selvom vi/jeg ikke altid ved hvad vi/jeg skal sige, er vi/jeg her altid for dig. 😘

    • Personligt er jeg ok med at blive spurgt om prognosen, jeg kan bare ikke svare andet end, at jeg ikke ved om min pige får lov til at blive voksen… 💛

      • Det SKAL hun bare Siff.
        Jeg håber I har familie og venner der bakker Jer op. Jeg står disponibel dag og nat det ved du. 😘

    • Nu har jeg lige kigget ind her – efter jeg var hos Jer i dag.
      Jeg har ikke ord for, hvad jeg føler – andet end jeg føler noget vrede … (Ord er ikke nok her).
      Men vrede over at I skal rammes så hårdt – og at Noelle (og I andre som familie) skal igennem alt dette her.

      • Ja, det er simpelthen så unfair! Det er meningsløst og mit hjerte bløder for min lille Musling, der igen skal kæmpe ikke bare for sin førlighed, men for sit liv! Hun har allerede været igennem mere end langt de fleste voksne mennesker når i hele deres liv… 💔

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