The surgery

It has been awhile.

Coming back to Hamburg again after holidays was really hard on me. Not because of the “I am foreigner ” thing but because I knew we had some major events waiting for us.

One of them was Gabi’s PEG surgery.

I know it is just a surgery, that it is simple procedure but, for me, it is everything but simple.

I know this is the one more thing that this stupid Batten disease took away from my daughter.

It is one more lost battle and getting closer to lose a war.

On days like that, I just can’t stay positive. Nothing makes sense anymore and I just want to disappear. Then I usually disappear. Emotionally. I just shut down, from friends, from family, from social networks, etc. I need period of my time to touch the bottom and rise up again. Every time, every loss, every function and counting.

Well she had a surgery. Firstly everything went well but the second we started with feeding, she had enormous pain. She was vomiting and even stopped breathing from the pain. It  was the hardest thing for me. I just can’t stand seeing her in pain. She didn’t deserve any of this.

We somehow managed through that first and second day, even though I had little break down on the second day evening because she was without liquids for whole day because of the mistake one nurse made and I was trying to explain that to the other stuff there on English and they didn’t understand me so I was freaking out. It is so damn hard when you are in hospital and you don’t know the language.

My beautiful child held my hand and cuddle me while I was crying because of her. Don’t even know what to think about that.


I was starting to write this post and then stopped. She had another surgery last week and now we are in recovery phase. She is not the same. Every single thing has effect on her. So we shall see what future brigns


Author: sarabajlo

Balkanska mama koja obitava trenutno na Zapadu. Mama djevojčice oboljele od rijetke bolesti, dječaka oboljelog od dječjih mušica u glavi i buduća mama jedne male Mare koja još ne zna što ju sve čeka.

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