“We gain strength, and courage, and confidence by each experience in which we really stop to look fear in the face…we must do that which we think we cannot” Eleanor Roosevelt
It was raining when we walked up Southampton Row. I glanced to my right and saw the work “Casino” in big blue letters. I thought of hitting the roulette table instead of late breakfast – after all between two of us we have three children with CCMS – a syndrome so rare less than a hundred cases have been recorded in the world. What is the odds of that? If the universe had dealt us the highest of odds could we not replicate these in a casino?
Yesterday I met two extraordinary people – Jessica, a little girl with CCMS and her mother, Brianne. Brianne shared her family’s extraordinary story over some coffee and breakfast, while Jessica played with little colourful giraffes in silence. A beautiful, smart little girl, full of life, facing battles bigger than many of us ever will. On my way home I started thinking about strength, and how Freya, and the people I have met through her, have redefined to me what being strong really means.
When your child gets diagnosed with a life-threatening illness it feels like your whole entire life collapses. At first it feels like everything slows down; I can still remember every excruciating step we took from the consultant’s office to the parents’ accommodation after we got told of Freya’s prognosis. I remember how the information slowly seeped into my mind over the following weeks, how fear and feeling of impending dread made a home in my heart. And I remember the anger I felt when I looked around and saw the life in London in middle of a beautiful summer; people living and laughing – how could they, when my life was crumbling around me? I felt totally and utterly alone, like no one could ever understand what was going on in my head.
A few weeks later my partner and I sat in a waiting room of her maxillofacial surgeon with our little princess on my lap, nervously checking the meter on the oxygen cylinder. A woman approached us with her teenage daughter and told us their story – the midnight ambulance rides to resus rooms, the consultants telling them devastating news over, and how their daughter beat all the odds. She shared funny stories about trying to get medical formula out of the country to take with them on holiday when all countries in Europe had such banned products from the UK during the mad cows’ disease outbreak. She told us stories of operations, hospitals, experts proven wrong. She looked at us and with a knowing smile told she still did not knew how any of them got through the first couple of years, but that they did. I have thought of this conversation so many times and cherish it – it gave me hope at a time when our lives were the hardest they have ever been.
And I started to realise that life continues, and not just around us, but for us as well. Yes, we were stuck at hospitals for weeks, months even. There were more instances of one step forward and twelve back that I care to remember. But slowly, slowly, our lives started finding the new normal. Soon enough we met others; little people gravely ill and the families of these mini medical warriors. People who shared our path and touched our hearts, whether we sat with them by our children’s bedsides for hours, or connected through online groups or sites. And that was when my real lessons in strength started.
We think strength comes with power, with money, with well-made connections men wearing smart suits make in their clubs. We mistake bullying as being strong, we erroneously consider unkindness and opportunism as signs of strength of character, when all it truly reflects the opposite. Trying to push over those you consider weak does not make you strong. It makes you a c*nt.
So what do I think is true strength? It is a child who laughs and plays even when they are in pain. It is the parents who push through, day in day out, to provide their kids the best chances to live, even when hope is scarce. It’s when we learn some pretty scary medical procedures that we need to administer just to take our kids home. It is when we live, laugh, love and enjoy our lives, even when the challenges we face seem unsurmountable. It is when we stand our ground and say NO to injustice and unkindness. It lives in sacrifices we make; the careers abandoned, friendships lost, the bank balances depleted. It is the decisions families take to provide the best fighting chance to their children and when they allow their precious children to go when the battle gets too hard and when peace must be found.
Not everything that doesn’t kill you makes you stronger. We carry the stress, the pain, the trauma with us, slowly shaping us into the new people altogether. It can make or break you. And like Brianne said to me over breakfast, it is sink or swim. Except that when you are fighting for your child sinking is not an option. She reminded me that you can float for a bit, catch your breath, but the only option afterwards is to swim. And that, I think, embodies strength.
So I choose to swim. Every single day of my life.
P.s. Brianne also blogs about their life with CCMS – have a look at http://motherof3specialchildren.blogspot.co.uk/