Freedom. A vacated beach, the wind rustling my hair, the gentle lullaby of the waves crashing on the shore, the salty spray gently kissing my face as I run towards the waves, my arms outstretched, my eyes closed, I don’t have a care in the world. This is what I picture when I think of the word freedom, but in reality, I couldn’t be farther from that picture. In fact, freedom is the last word I would use to describe my life right now! However, as with many aspects of life, my perspective on freedom has changed over the past few months.
Early last August, we were given the devastating news that our youngest daughter, who had just turned two, had cancer. She was diagnosed with stage IV neuroblastoma, a cancerous tumour in her adrenal gland, and in one foul blow, our world was shattered and changed forever. Life as we had known it was suddenly thrown out the window, and we were thrust into a whirlwind of hospital admissions, chemotherapy, medical jargon, clinic visits and a roller coaster ride of ups and downs that we had no choice but to hold on for dear life. Seven months on, nine admissions, six chemotherapy cycles, surgery, high dose chemo and a bone marrow transplant later, Evie has responded well, but we still have about 7 months of treatment left. We have just been through the high dose chemo and a bone marrow transplant, in which she was in hospital for five weeks straight, in strict isolation. Although we are home, and she is doing really well, she is still considered immunosuppressant, and needs to be in isolation, as well as being hooked up to feeds overnight and on four different medications every day and night. It’s full on! We can’t really take her anywhere, especially where there are lots of people and she can’t be in contact with anyone who has a cold or the flu. The next stage of her treatment is radiation, which will happen in a few weeks. A very different picture to running carefree on the beach…..
When I was asked to contribute for the Freedom Chasers series, I agreed, thrilled and honoured to be part of something so exciting, but the very next day, I questioned whether I was the best person to be writing about freedom! Physically, I feel far from free. In fact most of the time I feel trapped and isolated. It made me think about freedom. Was I free? Did I have any authority to talk about freedom and running free? Although my actual physical situation doesn’t lean itself to running free, I believe that freedom and running free is about more than your physical surroundings and situation. For me, freedom has been about my attitude and my character throughout my challenging journey. When we were first faced with the devastating news, I went through an array of emotions in such a short time frame. I questioned, ‘Why? Why did this happen? Why did Evie have to go through this?’ I felt anger, despair, hope, faith, doubt, agony and weirdly also felt incredibly blessed for the people who I had around me. I could have very easily settled on the angry and bitter emotions. However, I decided early on that asking ‘why’ was futile, and it wouldn’t change the fact that our daughter had a battle ahead of her to fight the awful disease that had invaded her body. It would only make a horrible situation even harder. I decided that as her Mum, I couldn’t afford to be bitter, angry, or depressed. I had to be strong, positive, supportive and full of faith, to fight on her behalf. I did not have any control over my circumstances, or what was to come, but one thing I could control was how I would face it. I have tried to stay focused on the positive aspects of this journey. To be grateful for the little things, and hold onto the precious moments that I may have taken for granted. Don’t get me wrong, there are days when I break down and it all gets too much. There are days when the enormity of what we are facing, what our girl is facing, hits me and I struggle to catch a breath. There are days where everything seems too hard, and I long for a ‘normal’ life that so many people seem to have. But I have learnt that it is ok to have days where I break down. To be real and honest with myself others, and to be able to admit when I am not coping is part of being free. To look at my situation and battle head on and say, ‘I will not be defeated by this!’ I may struggle, but I will continue to keep getting up and choosing freedom. I won’t pretend that it is easy, and I have it all together, but I will see the beauty that can be found in the ordinary things and moments. There is a freedom in admitting you are not perfect, and allowing other people to help you get through tough times.
So, although I may not be running carefree on the beach anytime soon, I will continue to chase freedom where I can. It’s a journey, and a continual fight for freedom, and some days I fall short, but I will continue to fight for my freedom, for the freedom of my family. And one day in the near future, I will be running on that beach with my husband and my girls, celebrating that we made it through what we are currently facing!
Love Sarah Weir xxx