A Constant Supply of Gingerbread Men
Since this journey began, I’ve found myself on occasions drifting into a kind of glazed daydream, pining for all the things we are missing out on since Hugo was diagnosed.
I don’t want to feel sorry for myself, but sometimes it’s difficult not to feel sad for the life that is passing us by. I long to plan family holidays and weekends away. I stare wistfully into restaurant windows as we drive to hospital appointments, wondering when, or even if, Richard and I will get the chance to do those normal couple things again. I want to get on with the plans we had for decorating our house. I dream of girlie days at the spa and shopping trips. I think of all the places I wanted to take the boys that now have to put to one side. I suppose it’s understandable to feel a sense of loss for the lives we once had, the future we had looked forward to and the plans we had made. To miss the little luxuries we had previously taken for granted.
Sometimes the thought that our life will be in a leukaemia related limbo for another 3 years is overwhelming. The time stretching out before us feels almost too huge to imagine. I feel scared, angry and sad for the huge impact this awful disease is having on our lives, on our ability to be normal. I want to be normal, I miss normal. Sometimes I want to stamp my foot and shout in a petulant voice that it’s not fair. Because it’s not fair, not on me, or my husband, but most of all not on my children. Their lives are only just starting, there shouldn’t be any compromises, not for them. They shouldn’t have to experience anything other than normal.
However, in the middle of all this, amongst the fear, anger and sadness, I can see that there is still so much to be grateful for. Hugo and I have just spent 8 nights in hospital, away from our home, away from the other half of our family. This interruption in our new normal has highlighted just what we do have, how much there is to miss and has made the most mundane of things suddenly feel so very wonderful.
It sounds like a cliche, but when things like this happen, it really does put things into perspective. Our new life is hard, but in amongst the struggles, there are bright spots.
A takeaway with my husband accompanied by a cheeky glass of wine. Spending the night in my own bed, using my own shower. Waking up and starting the day with all four of us together. Being able to take Henry to school, then having a cup of tea with a friend. Watching the boys play together, to see them enjoying the simplicity of just being together after days apart. To see them happy, laughing, arguing even. These are the new luxuries in my life, these are the things I now find myself thankful for.
We have fantastic family and friends and a warm, cosy house. Despite everything, the boys still have that beautiful childlike wonder with the world and all the good in it. They have an ability to feel excitement about the smallest of things. They don’t have an understanding of what they are missing out on or that their lives are any different. They are loved and we are together. Hugo is still here, he’s fighting and that is more than enough, that is the biggest and most wonderful luxury possible. He doesn’t need fancy holidays or big plans, he needs us to be by his side fighting with him. He needs dancing round the kitchen, playing with his big brother, cuddles and, at the moment, a constant supply of gingerbread men. He has everything he needs, we have everything we need, right here. When it comes down to it, that is all I want, that is all that is important, the rest is just window dressing.
Our new normal life may not be the one we had planned, but it is still pretty great. One day we will be out the other side and I can’t wait to experience just how amazing boring old normal will feel then.
