A Bumpy Road

A few months ago I wrote about a bump in the road. Hugo had broken his leg and there were questions over his bone density and muscle weakness. My head was spinning with all the ‘what ifs’ as we waited for answers.

Hugo has been unable to walk since the break. There has been an inconclusive bone density scan, a painful nerve conduction test, a pause from medication, X-rays and most recently an MRI scan to rule out neurological or spinal issues. He has had physio, hydrotherapy and daily exercises. We have had more frequent visits to Great Ormond Street Hospital as they try to understand what is going on and help him get back on his feet.  It has been over six months since the plaster cast came off. There are still questions, uncertainty and worry and I am still wondering just how big this bump in the road is.

During this time we have had to adjust to yet another new normal, that of life with a disabled child. There is now a wheelchair and a walking frame. It’s hard. Physically and emotionally. Watching Hugo struggle painfully to put one foot in front of the other, realising that there are now even more things he is missing out on, a childhood that is slipping by unexplored. He continues to smile, to be brave and yet again I am thankful that he is too young to fully understand the extent of the situation and what lies ahead. The worries swirl in my mind – how will he manage his first school sports day? Will he alway be behind his peers, continually trying to catch up to the impossible? How long will this fight with leukaemia continue to affect his life? The realisation that the end of treatment will not mean the end.

A few weeks ago we hit another bump when Hugo was admitted to hospital for what turned out to be acute liver failure. We spent a week in hospital for treatment while again, they tried to figure out what was causing it. More questions, more uncertainty and more worry.

I’ve often said that this experience has taught us to expect the unexpected, but in reality this lesson means little. When a bump hits you can never be fully prepared. The problems can never be predicted, the answers are rarely straightforward. They are not black and white, they are a murky shade of grey covered in ‘what ifs’. Remaining positive becomes all the more difficult when the battle you face is unknown. It’s emotionally draining, it’s heartbreaking and it’s unfair.

But life goes on and so do we. The team looking after Hugo is expanding week by week as new possibilities are explored and the help he needs is provided. We remain grateful, acutely aware that things could always be worse. We may never have the answers to so many of the questions and we are slowly learning to accept this.  

Hugo continues to amaze us with his resilience and ability to deal with whatever is thrown at him. He is a whizz in his wheelchair and has mastered kicking a football while using his walking frame. He has made friends at school, all of whom accept him and his wheelchair without a second thought. He is happy and he is living his life without a care for these bumps in the road.

This maintenance phase is proving slightly more challenging that we had imagined. The bumps more frequent and unusual than expected. It’s taking more effort to stay positive, to look on the bright side, but as usual Hugo is showing us the way. He is giving us the strength we need, because if he can stay happy, if he can be strong, then so can we.