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14 months ago we were a normal family, living an ordinary life. Then in July last year, our 2 year old son, Hugo, was diagnosed with acute lymphoblastic leukaemia. An unwelcome, uninvited guest that burst in with no warning and turned our ordinary life completely upside down.
When something this serious happens it feels like the world should stop, that life outside the door shouldn’t be carrying on, just as it did before. How can it when ours changed so drastically? But it does, life goes on. There was a temptation to wrap Hugo in cottonwool, to shut ourselves away in an attempt to protect him, but that wouldn’t be fair. He needed some kind of normality, we all did.
Each phase of treatment has been different and we have adjusted to the twists and turns as we go, trying to hold onto some semblance of normal family life. Earlier this year, Hugo started the fifth and final phase of treatment, one that will last until September 2018, and with it came the hope of a more normal, predictable life.
Every month is now the same. Hugo’s hospital appointments and nurse visits have become part of everyday life, sitting on the family calendar alongside parent’s evenings and birthday parties.
In many ways we resemble the normal family we were before this all began. Hugo no longer looks ill. His hair has grown back and he has put weight on. He has gone back to nursery and I have returned to work. We have even, bravely, booked a family holiday. All very normal.
Except it’s not, not really. It’s a strange life, a kind of limbo, in-between life, wavering between serious illness and normality, ready to switch in an instant. The shock we felt at diagnosis may have dimmed, but it is still very much there, along with the constant fear and worry of what might be. There is no break from it and it can be exhausting.
It’s a life with boxes of medication and a sharps’ bin, in addition to the usual toys and books. Where an overnight bag is always packed, in case a dash to hospital is needed. There is daily medication and their side effects for Hugo to endure. We have learnt to be vigilant, to not take any chances when it comes to Hugo’s health. To expect the unexpected.
A life in which big brother Henry has come to realise that on many occasions he is the ‘other child’ as the focus so often falls on Hugo. Where there are tough conversations about cancer, chemotherapy and the reality that children can die too. Conversations that no 7 year old should need to have.
This new normal brings with it dark and scary days, when the enormity of what we are dealing with seems too much. When I feel overcome with anger at the unfairness of it all. How dare this illness come into our lives with such ease and cause so much sadness. How dare it mess with my child, with my family. There is frustration at the restrictions it has placed on our lives. Leukaemia fills my head leaving little room for anything else and trying to be normal is a huge effort, often just beyond my reach.
It can be a sad and lonely life, as people struggle to fully understand what we are going through, despite their best efforts to try. A life filled with guilt, that even though I know there is nothing I could have done, I have in someway failed to protect my children.
But despite all this, there are bright spots too in this strange new existence of ours.
It has shown us all we have to be grateful for. That we can find joy in the little things we previously took for granted. The time we spend together, creating happy memories, is all the more cherished. This life is filled, not just with sad tears, but with happy ones too. Watching the boys play together, seeing Hugo laughing and behaving just like any other healthy 3 year old, a moment of total normality that makes my heart soar.
This life is full of love, support and generosity as our friends and family reach out to us. It has been heartwarming to see how much goodness there is in the world at a time when it seems to be dealing you the worst it has to offer.
Our new normal has taught as that we are stronger than we thought, that as long as we are together, then nothing else really matters.
Then there is Hugo who has been simply amazing. Who has shown a strength and courage far beyond his years. Who manages to keep a smile on his face and still see the wonder in everything. It hasn’t dimmed his spark, not at all. My heart breaks for all he is going through, but at the same time, I couldn’t be prouder. He is our strength.
So, we keep going. Taking it one day at a time, adjusting as we go, trying to make sure the good days outweigh the bad. We do our best not to let this unwelcome guest take anymore from us than it already has. We pull together as a family and try to find a way of living this strange new normal life.