Broken Pieces

A couple of weeks ago I found myself at our local hospital. Not a particularly unusual occurrence given Hugo's situation. However this time I wasn't there for Hugo, I was there for me. I'd been to the doctors that morning having felt ill for nearly a week. He was concerned by some of my symptoms and sent me to A&E. A blood test, some prodding and poking and 6 hours later I was released with nothing obvious wrong. I remained ill for about 10 days with a variety of symptoms, but am now, almost, back to full health.

I have often spoken of how emotionally draining Hugo's illness can be. How tired I often feel and that the constant worry can fill my head at the expense of everything else. It's impossible to quantify the effect his illness has on us all. How tired is too tired, how stressed is too stressed? What is because of his leukaemia and what is just life?

I've been told on a couple of occasions that I take on and do too much. I'm not sure I agree, but being ill has made me question the possibility that maybe it is too much for someone who has been looking after a child with cancer for nearly 3 years. It felt like my body had had enough, that it had reached a point where it had no option but to shut down and force me to rest. Perhaps the worries and stresses have been building without me noticing as I tried so determinedly to provide a normal life for my family. To feel thankful and to make a difference. To not let cancer win.

I'm tired, we're all tired. This journey has been long and the end is now so close. The moment we have been waiting for is within our grasp, but with that comes a different kind of worry. What happens next? 

I stopped working just over a year ago and at times I have struggled to justify my new unpaid existence. I have felt guilty for how little I have achieved on my to do list, how messy the house is and how snappy and irritable I still am much of the time. I have searched for a purpose, a path that I could follow into the next phase of our life. I want to take the broken pieces and make something beautiful and strong from it all. To give some meaning to all that has happened.

But these last couple of weeks have shown me that maybe I am putting too much pressure on myself. Maybe being where I need to be, doing nothing more than being there for my children is enough. Putting one foot in front of the other and managing one day at a time is enough. That taking care and being kind to myself is the best thing for Hugo. He needs me to be strong for when he isn't. To carry him through these last few months of treatment, because there is nothing more important than that. It just doesn't work if I'm broken. Maybe just getting through this experience is beauty enough for now, the rest can follow. Perhaps there is meaning in a million different ways that we can't possibly see or comprehend yet. There is no rush.

So I will try to slow down, to help us all to slow down. To take it one day at a time and not stress the small stuff. Maybe the last couple of weeks were a wake up call, a reminder of what is important right here and now. Or maybe it was just a virus!

My Other Child

A few months ago I posted a photo of Henry on Facebook. We were on a day out, just me and him. A treat day to spoil him a little, because it's tough when you're the sibling of a child with cancer.

1000 Days

Sunday marked 1000 days of treatment. 1000 days since Hugo was diagnosed. 1000 days of living a variety of new normals.

So what does life look like after 1000 days?

All About Hugo!

For those who have never met him, here are 10 things about the superstar that is Hugo....

* He is one of only 4% of babies who are born on their due date. It was a speedy labour lasting only 3 hours from waters breaking to him being born, and only 10 minutes after we arrived at the hospital. He arrived with his hand above his head, in a superman pose. I should have known then that he had superhero abilities.

The Long Version

Over the last few weeks we have had a couple of little blips. Small bumps along the road of our new normal. 

We have these every so often. I don't tend to write about them, because everything turns out to be ok. There's nothing to worry about and it just doesn't seem newsworthy in the bigger picture, once the moment has passed. But I should. Because these bumps are so much a part of our cancer journey. They are the reason why our life is so far from normal, they are the story behind the chemotherapy and the more familiar aspects of a cancer experience.

Bring it on 2018!

So, we have reached 2018, the year Hugo will finish treatment. It feels significant. The countdown can well and truly begin.

I remember, just after Hugo was diagnosed, reading that treatment for his type of leukaemia would last just over 3 years. I thought it must be a mistake, a bizarre typo. How could life continue with any semblance of normality for that period of time. How could anyone manage 3 years of chemotherapy, let alone a child, my child.

One Day Cancer, You Will Be a Dot

Today it has been 2 years, 4 months and 5 days since Hugo was diagnosed with acute lymphoblastic leukaemia.  

The significance of this day?

He was 2 years, 4 months and 5 days old at the time of diagnosis.