Sophie and I want to give you an insight into our life when we take a step back and look upon our family living with Cystic Fibrosis from our own points of view as parents – So here goes with my view on events…
As you will already know, on the 22nd July, our second little boy Stanley-Ray arrived and life began as a family of four. I originally planned to have two weeks off work on paternity leave and then return to work while Sophie could get into a full routine with the boys, but as Sophie had a cesarean I asked for a further week off in order to help around the house and with the boys so she had that little bit of extra time in order to recover. Looking back now, everything happens for a reason, and it was in that extra week off that we found out about Stanley..
When Sophie received the phone call from the respiratory nurse to say that the hospital wanted to see us, she pretty much knew what was coming but I tried to not think about that and thought it would be something to do with our eldest son Alfie and the medical issues he has. I tried to reassure Sophie that that’s all it would be, but even in my head doubt set in. Later on that day we arrived at the hospital, the usually busy clinic area was empty and for me there was an eerie feel to it – the calm before the storm maybe? We were seated in a room at the end of the corridor, we had half an hour to wait and as every minute passed I became that little bit more fidgety and felt my heart beat that little bit harder.. The door then opened and in came the cavalry, a whole medical team walked in, the first thing that I noticed was the pharmacy bag full of medicines being carried in and it was at that point that I knew Sophie had been right (I’ve got to admit her instinct has never been wrong with our boys). A few questions from the team followed and then the train hit, we were told our youngest boy had Cystic Fibrosis – for me time stopped and my heart broke, in that split second inside I cried a hundred times over but something kicked in, I couldn’t get upset and felt that I had to get Sophie together and Stanley sorted. What then followed with having everything explained to us.. the medicines, physio, it was all thrown at us at once.. it all seemed very surreal, it couldn’t be happening – but it was. our lives changed in that one sentence, in that one moment that you think will never happen to you.
In the car journey home I couldn’t speak, if I did I knew I’d break. We went to my parents on the way home to let them know, my mum had already text to see how we got on but I couldn’t let her know her grandson had Cystic Fibrosis over text. We got to my parents’ house and my Dad asked what had happened I replied ‘Stanley has Cystic…’ and there it was I broke, I couldn’t say it and words failed me, it was harder saying it out loud than I thought. Maybe saying it out loud made it seem all the more real?
In The following days I think Sophie and I went into autopilot, having the Cystic Fibrosis Team in and out of the house,whilst trying to keep some sort of normality for Alfie and at the same time starting to get to grips with the fact that we now have to live with Cystic Fibrosis.
As a Dad, during those following days, I felt I had to show my boys that whatever cards we are dealt with, we have to fight and stand up not only to be counted but to make a difference to the cause. so since then, I have made the decision to raise money for the CF Trust and wanted to do something big – so I’ve decided to take part in the London to Paris bike ride in May 2017 , family members have stepped up also to join me on this small journey and we aim to raise as much as we can – stay tuned on this one! ..
We are now 5 weeks after diagnosis and some kind of normality is starting to show its face again –Alfie’s back at school, I’m back into the swing of work, Stanley is in his routine of medicine and physio while blabbering away without a care in the world and Sophie is being the super mum we love her for and doing the things that us boys think fairies do! We are 5 weeks into what will be a long journey, a journey of life and a journey living with Cystic Fibrosis and I personally couldn’t ask for anyone else to be on this journey with, my childhood sweetheart and my two boys Alf and Stan.
A few years ago , without knowing what was to come, I had a tattoo that reads ‘Learn from yesterday, Live for today, Hope for tomorrow’ and now that saying has never been more true. As parents we learn from yesterday – learn new ways to deal with Cystic Fibrosis. As a family we live for today with no worries and cherish what we have – and for tomorrow, we as parents, hope for a cure, that one breakthrough that will change everything. But above anything else our boys future..they will live with the world at their feet to explore – one we know they will conquer.