21 – Dream Away…

April 24, 2012

Yesterday was my Port- Surgery. Usually that’s nothing complicated, but my lungs are swollen so there war a risk to harm the lungs and to cause a pneumothorax.
But everything went well, it just needed a little longer than usually, but I am fine now.
I slept after the surgery, and the rest of the day i was distracting myself with Dr. House DVDs. He always cures everybody.
Today I had lots of treatments and therapies. The rest of the day I was drawing. It has become a real hobby and passion for me.
During the days before my surgery I was drawing a pic for my sister:

And one for my mum:

My pain is as strong as before, but I can deal better with it and I slowly learn, to live with them.
My lungs are still not good but I use my nebulizer very often and I try everything i can to make it better…

Tomorrow the Cf- specialist will come here and talk to me to tell me what they are planning to do about the transplant, the infection of the bone marrow, and if they van operate my broken vertebras.
I still have to stay in bed. We don’t know for how long. Im about 10 days they will do another test to see if there is any improvement. I am not allowed to move until this test is done and shows, that my back is getting better.
I have spent such a long time in this little bed. Maybe it’s strange but I am still positive.
I watch movies and draw. While watching movies I can distract my thoughts forget the hospital for a little while. While drawing, I can think about everything.
I think a lot, about living and dying, about being sick and about being happy. I think, your happiness only depends on you, not on other circumstances. Only you are responsible for your own happiness.
I still love my life, even when it’s not the best right now. Children in Africa, that suffer of hunger and barely have toys are often happier than the children here. They are full of love and they appreciate the little things… This are the abilities and features that many people here don’t have…
I know that Cf can’t be cured. I also know, how quick my lungs got worse. My doctors not only talk to me about surviving with Cf. They also talk to me about dying of CF.
I am not blind or dumb, just because I am happy, even with this prognosis. I decided for myself to enjoy life and to honor every little moment. I decided to live NOW.
Sometimes it’s all too much for me too. Then I just dream away. On Twitter I asked for pictures of nice places all over the world. I received sooo many. During the last weeks I have been to Spain, Netherlands, Belgium, Italy, England, France, Russia, Australia, USA, Canada, Puerto Rico, Dom.Rep., Colombia, Argentina, Peru, Chile, Afghanistan, Japan, Egypt and many more.
Thank you for that!
You show me every day what i am fighting for and for what I want to live. I want to see the world and all the beautiful places you showed me.
I know p, that i will die of cystic fibrosis. But i am not ready yet. Not now. Not here. I will always keep fighting.
Thanks to everybody who sent me a picture.
“if you aren’t brave enough to dream, you aren’t strong enough to fight.”
And thanks to Luis and Arno, to my beautiful family and my great friends. I love you.
Daniela @Kruemelfrost


6 Responses to “21 – Dream Away…”

  1. Paul Almonte Says:

    Thats what im talking about! Motivation baby! You are not alone and we all want this CF shit to end ! I love you Mama! ❤

  2. Carson Rodke Says:

    You’re a great artist Dani!

  3. Michael Says:

    Dear Dani,
    Our 9 year old daughter Sophia Rose has Cystic Fibrosis. We are thankful that she is doing as well as possible at her age. After reading you’re blog we appreciate & certainly understand what u r going through. It is awesome that people have shared with u the beauty of this Earth. We just wanted to be certain that u also knew of the glory that awaited you in Heaven. You may think we’re crazy – but it simply is not true! There is truly a loving God awaiting your arrival when u leave this sickly world! Please do not despair! God is faithful & so r those who love Him! Are prayers r always with you!

  4. ziaboga Says:

    hola Daniela: me alegra mucho verte de nuevo en el blog y decirte que tienes mejor aspecto que el día 22 , lo cual es bueno para tí.
    también veo que la cirujía ha salido bien y que estás dibujando de nuevo.El otro día estabas muy baja de moral y te costaba mucho respirar.Hoy pareces otra persona y más animada.
    Hoy en España es el día de la CF y desde aquí quiero mandarte mucha fuerza y un fuerte abrazo.estaremos en contacto.saludos
    jesus ureña

  5. Dani your strength alone is an inspiration. I honestly have never met such amazing people like CF sufferers. Your will and determination to go on and live in the now is encouraging for myself and my girl who also suffers from this nasty disease. On another note your drawings are beautiful! I’m sure your sister and mom will treasure them forever. Stay strong! Love you bunches 🙂

  6. Sam Says:

    What are you positive. I hope it’s quickly going a little bit better.

    A hug from the Netherlands

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