‘Justice League will be on screen in your Movie Theatre for the last time. Make sure you haven’t missed it!’

Wow, this was my lucky shot!

I thought I missed it already, because it was in theatre when I was testing the medicine. Ramon had to go away to Germany for two days for work, so who better to call than dear old dad to join me? I knew this was going to cost me a lot, so to build in a safety precaution, I thought it would be wise to stay at my parents’ house after the movies. It still would be energy draining, but less if I would  go home after the movies, and besides, I knew I would make not only my father extremely happy, but my mother as well. After this shitty time we’ve gone through, and the rough prospect of life I have laid before me, I knew she would love to have me all to herself for a moment, as her little girl back home.

But what a smack in the face!



The ride home with Kuzco and Malha with me on the mobility scooter, was extremely exhausting. Far, far more than I thought it would be. So after a ‘hello, I love you’- hug, I was send to bed. And I couldn’t even argue, even though it frustrated the hell out of me. I wanted to sit down with my mother, and drink some tea while we would chitchat before I would go to the movies with my dad. But there was no way I could see the movie if I didn’t rest for a while. And I really, really wanted to see the movie. In fact, I needed to see the movie. I needed some Super Hero Inspiration, just to keep my head lifted as it felt so hard to keep it high.



We saw the movie, and we had a great time together. And ohhh, how I cried. This was my church time. I even started to cry at the beginning of the movie. Superman was interviewed by some kids, and was asked what his favourite thing was on earth. And it was answered  with a superhero gaze into the sky…. Which you knew he thought of Lois Lane…. And I immediately thought of Ramon. Straight followed by a scene with a bum and his dog, sitting on the sidewalk holding a cardboard written; ‘I’ve tried.’ I can’t even hold back my tears writing these words…

So yeah, I enjoyed the movie very much, and enjoyed the one on one time with my dad, and mom the next morning.  But the whole ordeal cost me far more than I wished. While I wouldn’t have want to trade it for the world, because this mother/father/daughter time was important as well, I had to sacrifice the next two days. I couldn’t do anything else than sleep to keep my body from shaking, and my seizures get passed safely on to the cushions around me.

I used this time away from civilisation, as an excuse to not box my Hanukkah decorations already. But now I know the real reason why.



The moment I removed the pins from the garland this morning, a big lump was stuck in my throat, and I started to cry.

‘What should I do with it? Shall I throw it away, as I most likely will not get to use it next year? Ramon sawed all the letters for me once, and I painted them a festive  print and colours that would fit in our interior, but he did so especially for me. He knew how much it meant to me, but he has no feelings what so ever on any kind of religion. So it has no use to keep. Better to throw it away then….

Good riddance goodbye.’

But while the last words got stuck in my head, with my hands pushed firmly into my side, they slowly lost their strength, and hang loosely beside me, with my head following that same movement.





I am not throwing it away already. It doesn’t take any space in the attic, and maybe it can hang on my bedpost next year, when my body still hasn’t given up and I am stuck to the dialysis all day. Or whatever…. I will not focus on the end, even though it is a reality we are facing. I will focus on today, and today is not the day to cry, and certainly not to throw away stuff that still holds any meaning to me. I will focus on Malha’s birthday next Saturday. A happy joyful day, with a birthday cake to bake, and lots, and lóts of cookies. Something to smile about.