Hughes Travels


Travelling was always a major part of mine and Ian’s lives. We prioritised seeing new places, meeting new people and experiencing new cultures over other parts of our lives. When Seb was four and Oscar was two, Ian and I gave up our stable careers and travelled around the world for five months before settling for a while in Denmark and it is a trip I will never forget. The extraordinary memories and experiences with Ian and the boys have got me through so many tough times – knowing that we did so much together, had so much fun and took so many chances on life makes me feel like we have all lived full lives, however long or short they actually are.

When Oscar died in May 2014 we decided that a holiday was just what we needed. It had been a hellish year for us all with so much time spent in hospitals, travelling to appointments, emergency ambulance rides and all the upheaval that comes when one of your children is diagnosed with a brain tumour. It was the obvious choice that we would go on holiday and try and start the adjustments to our new life as a family of four.

But we had the most surreal experience on this holiday: we hated it. What was meant to be a healing trip ended up with all of us feeling lonely even though we were together and we did not know how to break out of that feeling. It was only weeks after Oscar’s funeral and we went to Mexico for two weeks. It was the longest two weeks I have ever had and not for the right reasons. But we recognised what was happening straight away, talked about it together and promptly facetimed friends to invite them on our summer holiday to Italy that year (this was a pre-planned holiday which Oscar had chosen as his end of treatment holiday).

What we learned was that friends and family are your lifeline in the toughest of times. It’s those that are closest to you that make you feel normal and help coax the fun out of you again, rather than an expensive holiday. Oscar’s death changed us all. We had to learn to live in the wreckage of our worst nightmare forever and for the sake of Seb and Lucas we had to learn to somehow do that well. Our people around us let us go through all the motions with patience and a non-judgemental attitude which defied logic, as both of us took turns in acting out some different sides of our personalities. It was trying times for our friends and firmly reinforced how lucky we really are. And I am so grateful to have people in my life who make me feel so good and make me feel that I am meant to be here exactly as I am. My wish for the boys is that they find the same with their friends – and they are well on their way.

Holidays after Mexico and Italy became easier, but it was definitely the small holidays which were the easiest – the ones with family to Bornholm (a beautiful little Danish island) or to France where we also have family, or weekends away in Wales climbing mountains with friends, would give us back the much-needed energy to face daily life. So after Milo was born, and with a renewed belief that we could do a big holiday again, Ian and I started planning for it. But then we found out that he too had a brain tumour.  We naively thought we could still go but instead his last holiday was a beautiful week in Spain with family and not a trip around the world with the boys.

There seems to be this pattern in our lives that every time something starts to go well and we are back on track, we just get pushed off a cliff again. I have a constant fear of great things happening because I think if I allow myself to start to dream of the next great thing, then something bad will happen. It is sometimes daily that I have to tell myself that we are allowed to have a good life and that horror won’t necessarily follow. And I make sure I tell others, because saying it out loud makes it more real and believable, but secretly in my head there is a whole other conversation going in which some of my brain power tries to convince the rest not to relax and be ready as bad will be coming – it’s a constant battle in my head that I smile through to the world around me. There is a name for this. It’s cherophobia, which is an irrational aversion to being happy. But mine isn’t irrational, it’s totally rational and based on what’s happened in our lives for the last 9 years since Oscar was first diagnosed.

When Ian died I had to force myself to start working out how to overcome my fear of good things happening, and ensure that travelling to new and different places would play a part in our lives. I guess I had already faced bigger challenges ( I know it sounds stupid as single parents do this kind of stuff all the time) but for me travelling around and experiencing new cultures is a big part of my happy times and I wanted our future trips to be memorable and special for the boys. A driving holiday to Italy is definitely out of the question until Seb turns 21 (at which stage he probably wants to go with friends) because you will not find me zooming in and out of lanes between speedy Italian drivers. And we’d already spent a lot of time in Europe, so the boys had all experienced the best parts of Sweden, France, Denmark, Norway, Scotland and Spain. So was I really going to be such a wuss and not take the boys on the big dream trips we had talked so much about? The answer is of course no (except I’m definitely never driving in Italy).

So I started planning for a big trip but I didn’t get far before Milo got his brain tumour diagnosis and I had to shelve the plans for a while. And suddenly this big trip became a goal for me – this trip would happen no matter what and we would love it. I was taking my three boys away travelling and giving them a taste of what Ian and I had always shared so happily. But then Milo got worse and when he died our lives were unravelling fast and I had other big decisions to take.

And I have to tell you, making big decisions on your own isn’t all it’s cracked up to be. Don’t get me wrong, there are some advantages; I decide what’s for dinner, I choose what to do on the weekend, I decide what to spend money on and it’s up to me how I socialise. Yes I know it’s controversial because it sounds like I am glad I am alone – I am not, but I am appreciating those positive things that does come with being alone. But the big decisions, the ones concerning the boys and their welfare, my finances, moving country and so forth – they can be a bit daunting. You just have to trust that you are doing the absolutely best you can at any point in your life.

My mum always says to me “Marie, you have to make the decision. Even if in hindsight you may have been a little wrong, or you have to change course, or you may tweak a few things, you still make that decision and you move forward”.  As anyone who knows my mum will testify, she is rarely wrong so I make the decisions and I keep going, sometimes knowing it will work and other times crossing my fingers, closing my eyes and hoping for the best. It can never be worse that where we have been, right?! On a sidenote that really is the oddest, beautiful thing to come out of all this trauma and death – my belief that not much can make me fall because I have stood through this hell already. I don’t do drama and I don’t care for things I cannot control.

Last summer the decision was made and I told the boys we were going away travelling together for a month. We talked about what we could do, where would they like to go, what would they like to see that they never had before. The world is so big and there are so many places but you have to start somewhere and we landed on the USA and we ended up doing it in style. That wasn’t the plan. The plan was to travel around on a budget fit for a single mum. But my amazing friends, their families, their friends and even people I’ve never met decided that we were going to do it differently, and they all raised money for us to have an amazing holiday.

I can’t describe how hard it was to say yes to that money. I have no problem asking people to donate towards research into children’s brain tumours, because I know this is needed and it can only get better with the right focus and funding. So I will unashamedly send out requests for donations so that we can irradicate the disease that has killed two of my children and my husband. It’s a different story when it’s money for yourself, and it took a lot of kind persuasion and explaining to me that this was for Seb and Lucas, too and that people wanted to help and support us and this was a tangible way that they could. Many times after I saw the fundraising had started I asked them if we could stop now because surely no more was needed but I was met with the argument that people knew what they were giving to and to put my pride away and just accept this, well to be frank, “monetary” show of affection for us.

I can’t explain how grateful I am. It isn’t really the money (although being able to take the boys in a helicopter ride over Hoover Dam and have lunch in the Grand Canyon was amazing) it is that people thought of us so much that they wanted to help take some pain away – if not for always then for a little time. We made memories that we will always look back on, but mostly I am grateful for the push to overcome the fear that I could not make a holiday happy for the boys and I alone again. It’s another step towards our new normal. And it feels like we’ve come a long way from that surreal and lonely trip to Mexico after Oscar died.


Hughes Travels


I am sitting in peace and quiet for the first time in a very long time. This past weekend was full of wonderful people and lots of noise on Ben Nevis for our fourth Family Challenge weekend. Well, I did steal some quiet solitary moments, but not many. Today I need to just sit still, not just because my legs are aching but also because I need to take time to just think about Oscar.

It hit me this morning that not only is today eight years since Oscar died, it is also the third time I am sitting here on the anniversary of his death without Ian. Last year doesn’t really count, though, because I was lying in bed next to Milo who was slowly dying at the time. Death isn’t instant when it comes to brain tumours – it is slow and painful on so many levels for all involved. And loving my boys and Ian will forever be wonderful and painful. I laugh one minute at the memories and the next I cry – over the same memories. And I sit here and think about all the memories we didn’t get to create. Oscar, no doubt, would have achieved so much already.  He really was the glue that bound he and his brothers together and without him we are all perhaps so very differently bonded together than we would have otherwise been, both good and bad.

I wonder how much a body can take and how much a mind can take and how truly interlinked the two are. Walking up the mountain and at the tough points with Oscar’s “give it all you’ve got cause you've really got a lot, give it heart, give it mind, give it soul, don’t stop!” on repeat in my mind, I came a little closer to his determination and ability to conquer anything thrown at him. His mindset was all winning and all determining in how he got through the last year of his life and also in how he died at the end. The last few days before Oscar died I remember as a relentless passing of gruelling seconds and minutes I just wanted to put on pause knowing if time kept passing it would come to a stop much too early for Oscar. 

He had so much more to give this world, and his brothers and I try to keep that going for him. We have him with us in everything we do and emotionally that is both wonderful but may also sometimes be a burden, for his brothers at least. The expectations from me are perhaps not always fair. As an example, Lucas was so excited to walk up Ben Nevis – until we actually got high on the mountain and things got tough. At that point when you just need a moment to gather yourself and complain that your legs are hurting, hearing your mum tell you that hurting legs mean you are alive so keep walking may not at all be appropriate. You’d think I would know better.  But we did need to keep walking, and pain does mean at least you are still alive and also, I am not a perfect mother and I was tired, too. Of course Lucas kept walking and found his beautiful smile  again, but no doubt in some years to come there may be some repercussions from my ‘get on with it’ approach to life that creeps in. 

The truth is, it’s the only way I know how to continue. My body and mind are intertwined to a point where I sometimes don’t know when pain starts or stops – it feels rather irrelevant though as it doesn’t change anything. What I cannot control I must leave behind or live with. But what I can control, I guess I feel I must. Like making sure I do what I can for the memories of Oscar, Milo and Ian, making sure we do what we can for other children and families, making sure Seb and Lucas are living a good life, making sure we’re all working hard, staying true to how I feel and what I want – now these are things I can maybe not fully control but certainly things I can give my best try and have a shot at. 

Today I can’t walk for the pain, but tomorrow I will go for a run. No point telling my boys to keep going if I don’t show them that that’s what we do. And I will put on one of Oscar’s favourite songs Ian always played to him in the car on the way to his matches – Thunderstruck. Now that should get me going!