Tue the 9th of Mar – Isn’t it Ironic?

The good news is that Mar’s up to 53kg. The bad news is that 4 of those are due to water retention and she’s bloated. Isn’t it ironic? From wanting her to gain weight, we’re hoping she’ll lose some…The Universe works in mysterious ways and I guess we should’ve been more specific in asking for how she’d gain those precious extra kilos! Anyway, Mara’s back in the hospital and the catheter’s back in her chest. I have more than one word to describe the general feeling and none of them are very ladylike. Rest assured, I’m far from cussed out but I won’t bother you with it (yet). Just know that I’m constantly yelling the words in my head and often they escape through my mouth. Mar’s mad, frustrated, depressed and looks according to herself like an overweight wrinkly old chipmunk. Her antibodies are attacking the red blood cells in her kidneys. It’s some kind of syndrome which I made sure to erase from my brain as soon as the Google results came up. They’re just too scary and I’d rather not know. The doctors say it’s not very common but it is an expected complication and it is treatable. It may pass in a week or a few weeks or months or it may not pass at all. The therapy is a bit of a trial and error one. They started last Friday with a daily plasmapheresis and blood transfusions. Depending on how her body responds, they’ll adjust the treatment accordingly. So now we wait…

Up to last Thursday, things were looking up. Mar was steadily gaining weight and feeling relatively well. Professor Martelli even gave us his blessing to leave. In his words, it was time to cut the umbilical cord with the hospital. We were planning Mar’s return to the Netherlands in mid March and I had already left a month earlier. One day I’m socially butterflying around catching up with my friends, the next I’m back in the hospital room holding my sister’s hand. Don’t get me wrong. There is NO other place I’d rather be then by her side yet I can’t help wonder why this is happening. Why to her? What has she ever done to deserve this? What could anyone possibly do to ever deserve this?

It feels harder this time too. Not just for Mara but for all of us. After the last time, she vowed never to be back in a hospital room. Not like this.

Perhaps after enduring this much, we’ve grown weaker in our defense and each new obstacle is blown out of proportion, becoming mentally harder to deal with. I know we’ll pull through this. I know Mara will stay strong and get past this hurdle. But I see how she tries to protect us and reassure us that she’s fine and I’m afraid to ask how much more she can take. The thought terrifies me.

Many of you asked why I stopped blogging. For me, it became a much needed outlet for my grief. I found unexpected solace in pouring my heart out, also in sharing with you and receiving so much comfort from you in return. The words seemed to flow easily through me as times became more dire. Then when the skies started to clear and a bright light shone through with all the promise of Mar’s recovery, my need slowly ebbed away. The inspiration that had previously compelled me to write simply disappeared. As I update my blog tonight, I can’t help but hope that any renewed “inspiration” will be very short lived.