Hugo’s Story

Happy and Sad Tears

Tomorrow Hugo will take part in his school sports day. It’s his second one, but his first since finishing treatment. This upcoming event has brought to head a mix of emotions that I have been feeling for a while. 
Firstly I feel grateful. So incredibly thankful that he is here, that he gets to take part in these everyday childhood rites of passage and the wonderful normality they bring to our lives. That his legs have strengthened and his confidence has grown since last year’s sports day and that he continues to make improvements in leaps and bounds. I feel proud, so very proud, of all he has overcome and how he has dealt with the difficulties he still faces. He is doing so well at school, he has a group of lovely friends and I know he has been practising his races. I am excited and nervous for him. He has finished treatment, we are moving steadily away from the struggles of the last few years and our nice new normal life is going so very well.

Hugo has found his own trampolining style!
Marching along with Henry
But I am also a little sad. Despite the vast improvement in his walking, he is still behind his peers. I see him, even when others may not notice. I see him walking, his ankles, feet and knees turning inwards, the muscles still not strong enough to fully support him. I know the effort it takes him to walk or run alongside his big brother or friends, how much harder he has to work and how often he still needs his wheelchair. My heart breaks a little when he tells me he can’t do some of the things his friends can, or that he again came last in the monthly cross country run at school. I feel frustration at the marks cancer has left and the unfairness that his fight with it is still not over.
He is a happy child. He isn’t worried about winning or losing. He’s kind, thoughtful and just enjoys being with his friends. But he is also sensitive and he’s becoming more aware of the things that make him different. I imagine this is the same for all children of his age, an awakening of self awareness, of finding who they are and where they fit. I am sad that Hugo is having to face some tough realities and I hope, I so hope, that he doesn’t let them break his spirit.
Then I feel guilty. Because he is here and so many other children who have walked his path are not.  So many parents who would do anything to see their child take part in a sports day, to get to live the life we do. To spend even a moment feeling sad or in any way disappointed seems so ungrateful. 
We are so very lucky, but at the same time there remains an unfairness. Trying to balance the two is hard. We all know that whatever our situation, however bad things might be, there is always someone worse off, but that doesn’t mean our difficulties are not valid. To be constantly positive, to put on a brave face and pretend everything is perfect, or even just fine, can be exhausting. And why should anyone have to?
I’m not really sure what the point of this post is, but I know I can’t be alone with these feelings. Life is a constant balancing act, in so many different ways. There are days when it is easy to be positive, to see nothing but the bright side and then there are other days, when the scales are tipped firmly towards sadness or frustration, when the difficulties can seem overwhelming.
So I will go to Hugo’s sports day and I will cheer on my little man and tell him he’s amazing. I will probably cry (again!) both happy and sad tears, and I guess that will be okay.

8 Comments

  • Sonja Nielsen

    Some times writing down our thoughts is the best way to deal with life. It doesn't have to make sense to other then yourself and i believe, you need to clear your mind with all you, Hugo and rest of the family has been going through. Wishing you all the best hugs ��

  • Lori LaRue

    What a wonderful update on Hugo. It's great to see him just being a KID. As a parent it's difficult to imagine having to see your child battling this disease. This is one of the reasons I joined MPC. My mothers sister had leukemia in the early 50's when they didn't know how to treat it. I pray one day all blood cancers will be eradicated! Your feelings are heartfelt and I see Hugo growing up to be a compassionate and caring adult. Sending lots of love and prayers to you and Hugo.

  • Unknown

    I have really enjoyed reading your blog. My 12 year old daughter was diagnosed with leukaemia in February. She has just started delayed intensification. We are so pleased to be at this stage and cannot wait to move into maintenance. I hope Hugo is keeping well. Like Hugo, my daughter's smiles and strength often hide the true battle wounds and pain but we just keep on pushing forward. Life will never be the same again, that's for sure!

  • Lisa Griffiths

    Thank you. I'm so grateful he gets to be a kid. It's heartbreaking to think how many children died before they knew how to treat leukaemia, but also comforting to know how much progress has now been made as it gives us hope that even more can be made in the future. Thank you for your comment and for all you are doing with MPC, we are so grateful to you guys xx

  • Lisa Griffiths

    Thank you so much, I'm always so sad when I read of others in our situation, but also pleased that I am able to help in some small way. I hope your daughter is doing as well as can be expected. DI can be tough going, but knowing maintenance is in sight helps. Hugo is doing well thank you. Children are so resilient and much tougher than they look. Sending you best wishes and strength for the rest of your journey and beyond. Please get in touch if you have any questions or I can help with anything xx

  • Unknown

    I will read all our your journey I'm Already agreeing with the side effects and feelings emotions of what our 16 son is going through.

  • Lisa Griffiths

    Thank you. I really hope reading our experience is helpful. I hope your son is doing as well as can be expected. Please feel free to get in touch if I can help at all. Wishing you all the best xx