And suddenly the world stopped turning…

This day a year ago, I first heard the word tumor and my son‘s name in one sentence. Where are we now? Well, the tumor was completely removed. Chemo was finished. The treatment ended officially beginning of last June. Are we back to normal? Is my son healthy? He‘s doing great. A toddler through and through. Discovering his own will, learning each day, conquering the world. Our world.

We need to be in the hospital every three months for check ups, x-rays/ultrasound alternating with CT/MRI. For the latter sedation is needed. Lyong still for 30 minutes is not feasible for a 2 year old, 1 minute can be a challenge already. For us, it‘s our normal. Did I think of this as normal when I imagined family life? Hell, no! But damn we are so lucky to have that.

On our way we met several other families with different destinies. One of them, L, 6 months older than my son, died last September. After having health issues for a few weeks or months, the doctors found a brain tumor around the same time, my son got his diagnose. His treatment included daily radiation treatments, which meant daily anaesthesia. He wasn‘t the only child, three siblings were most likely sitting at home and not understanding why the world can be so cruel. L was a little sunshine, a brave warrior, blond hair, bright blue eyes. He lost the battle when the tumor came back like a fog over his brain. Every day I think of him, and his family. I am so happy my son is still here.

I started working again back in September. It‘s good to be back, have a purpose other than being a mum. This is what I tell myself, what others are telling me. Am I ok? I don‘t think so. It‘s not only my child‘s illness, also all the other 💩 that happened around, I changed. I am doing my job, because the system we live in, gives me no other opportunity. Partiarch societies do not tend to give mothers a chance to find themselves, without letting them hang dry later on. We got 16 weeks of care leave for our child, because he was diagnosed with a deadly desease. 16 weeks! It was enough for undergoing the treatment, but far away from being enough for healing. My son wasn‘t allowed to go back to childcare until September. You can do the math: mid February to September… little more than 16 weeks. By the way, that law was only introduced half a year before my son fell ill. The social worker said, when I asked her how other families organised themselves, one usually quits his/her job. It needs to be mentioned as well that our treatment plan was extremely short. Other tumors need to be treated over years, side effects or late effects after treatment not even counted in. How can this be in a country as rich as Switzerland?

I cannot wrap my head around this. My brother-in-law smilingly said once: but money is the least of your problems now. It certainly is, still financial worries come on top of all other worries. People don‘t get it. They don‘t understand what it‘s like to accompany your child through chemo. Especially not those people who go on family beach holidays during the time when a family member undergoes life saving surgery.

But from the start. There‘s empathy and then there is egoism, probably narcisissm. Most of our social environment was shocked when they got the news. Co-workers of my husband supported in every way they could. Picked up our dog for trainings, divided his shifts, his boss even proposed to go on sick leave so he could be with us. All of them were checking in on us. So did all our friends. When it came to family, well, different story.

The day we got the diagnose, my brother would jump on a train and travel 7 hours to my mum‘s. In case I called for help, he would be taking care of her dog, so she could come. Which she eventually did and stayed with us for, I think, 6 weeks. Forever grateful isn‘t even expressing half of what I really feel. Even now, when thinking about it, I have tears in my eyes. Also, when the final appointment with the surgeons was fixed, my brother flew in to firstly visit us and then extended his stay to take care of our dog. It was mid summer then, the first heat wave striking and we had to go to another city for the final surgical check-up. THIS is family!

The rest? I don‘t know. Checking in from now and then, giving advice like „ge‘ll forget everything“ and that was their commitment. What I don‘t get over are a few comments:

• Didn‘t you feel it? the tumor was meant here. I can still hear the words in my head. No! I couldn‘t or better, if I felt something, how the hell should I have known that this is a tumor? I am NOT a doctor, neither is the person who asked this question
• He‘ll forget everything! No! Children do not forget, children as young as our son was/is remembers really well. Why should he forget anything concerning the treatment but not forget who his grandma is? There was a time he started crying only seeing the anesthesia mask. The pyschologists who we met during the treatment described it: he will not forget, but he won‘t have words for it. You need to explain to him then.
• This is not from our side! A sentence that was said when rumour had it the tumor in my son‘s body is hereditary.

I once met BIL when walking the dog, two weeks into treatment. He was out for a walk by himself. He needed some time off from the kids, he explained to the woman who‘s one year old started chemo few days ago.

They kept their distance, to protect our son. Very comfortable for them to go on with their lifes as if nothing happened. For us, our world has changed forever! I have changed, forever! I know that life went on for the whole world, but I expected a bit more empathy. Is that too much to ask?