Life can change in a heartbeat
Last Reviewed 12/06/2019
I remember ‘that day’ like it was yesterday: my fresh, beautiful newborn baby was just three weeks old. I had made it through the pregnancy and the birth, and now my family was complete.
It was the first day back to work for my husband who had been on paternity leave for three weeks. We had been joking around as I was feeling a bit jealous – he was returning to work and I was at home with my toddler and newborn. I was jealous he would get to enjoy a hot cup of tea! He left for work that day, but returned home to a different way of normal for our family.
That morning there was a knock at my front door – it was early and I wasn’t expecting anyone. I couldn’t find my front door key, so I searched the house with my beautiful newborn Eve in my arms. My eldest daughter followed me around, under my feet as usual, but innocently believing she was being helpful trying to find my keys. I peeped through the front blinds and saw Eve’s health visitor standing on the doorstep.
I kept searching and searching for the key. I instantly had a feeling that something was wrong. The first thing that came into my mind was did someone else call her, as I hadn’t? The second thought was the heel prick results – they have found something through the genetic tests. In the UK, babies have a genetic test at about five days old where a small prick of blood is taken from the foot to test for rare conditions. I felt rather calm,almost like I could say ‘I know what you’re here for’. I tried to play it cool for her as I knew she had bad news – her body language, her words: ‘is your husband home? Do you want to call him?’ I cradled my precious, fresh, perfect, tiny newborn baby tighter in my arms.
On reflection maybe I could have made her job easier and said ‘my baby is not healthy is she?’ But I couldn’t bear to say it and I guess I had already played along, pretending I knew nothing. I think I held my nerve if anything. In fact, I just didn’t want to know because I knew the pain would be so hard.
‘Your baby has cystic fibrosis’, she said. I hardly knew what it was at the time. Since then, I have learnt so much about the condition.
From that point on there has been no return to the life I once knew. I have decided, for now, not to return to work from my maternity leave. I work in the social care sector and I think it would be extremely challenging for me to continue in this demanding role.
Having our own personal issues and responsibilities comes with life – and boy, life can change in a heartbeat. I used to fight for children and families for a living. I relish a challenge, but for now I have my own corner to fight. I suppose am fighting for my own family. I’m fighting for my daughter to have access to services that will help her live a longer life. I’m fighting to be strong, to be happy. I’m challenging new systems, campaigning and learning new ways to live my new, nearly ‘normal’ life.
There’s no return ticket to the life I lived before my baby’s diagnosis, so I’ve just got to ride this journey as well as I can– who knows what the next stop will be! Sometimes life just has to be completely shaken up, changed and rearranged to take us to the place we need to be.
It’s now nearly a year since Eve’s diagnosis. Reflecting back on this year, it’s not been easy at all. Eve is fabulous and thriving, but we did hit some bumps in the road – countless colds, bronchiolitis and a hospital admission. Every parent living with a child with cystic fibrosis (CF) will appreciate the fear and anxiety that coughs and colds can bring. It’s not easy at first, but I suppose you do become better at dealing with dreaded coughs and colds. As awful an experience as Eve being in hospital was, it does make you more resilient as a parent and it really makes you understand just how strong and super resilient our babies are.
For everything that CF has taken from me this year, it’s given me so much more. It has taken a part of me that I don’t think I will ever get back, but I am getting used to my new normal. I still battle with CF daily – my head is still fighting it but my heart is trying to guide me in the right direction. I have met some incredible people – individuals with CF and parents. I have seen and felt strength and sadness on a different level. I now truly understand the meaning of hope. Eve has given me a gift, she has helped me learn to live for and be in the moment, something I’ve always been useless at doing. I now appreciate how important it is to just breathe and live for the now!
I have found great strength and hope in supporting a current campaign foraccess to medicines for CF. Eve and I joined the Cystic Fibrosis Trust in delivering 65 roses to 10 Downing Street in the fight for these medicines to be available on the NHS. You can find out more about the campaign we have been supporting here.
I have also set up a Facebook support page for families of babies newly diagnosed with CF. It’s a relatively new, friendly group with members ranging from early pregnancy CF diagnosis to people with CF. Group members offer advice on their own experiences, as well as helping to support parents. You can find out more about the group here.