My first blogs have talked about the initial shock of realising your son has a CHD (Congenital Heart Defect) and the despair of knowing someone is going to open up his little chest and try to mend his broken heart so that he can live. I explained how this inspired my wife and me to raise money and awareness for CHUF (Children’s Heart Unit Fund at the Freeman Hospital) and support the place that saved our son Sebastian’s life.
The vast majority of these fundraising efforts take a sporting route, a result of my background as an athlete; it seemed the easiest option for me. Since we started on our Seb4CHUF journey I’ve completed Half Marathons, Marathons, skied in a Mankini, run 5 back-to-back Marathons across the Country, then the following year cycled one way across the Country before running back. Throughout all of these (apart from the Mankini skiing) I’ve been joined by some of the most loyal and slightly insane friends you could possibly hope to meet. We’ve shared some pretty painful experiences along the way and raised a load of money to boot. When I’ve talked about these challenges it’s normally related to sweat, blood and physical pain; rarely in terms of emotions. Yet the thing that drives me more than achieving the physical aspect is an emotional desire generated from deep within.
The one thing I’ve never expressed (to anyone) is what drives me; why I get up when everyone is still asleep to train for my next challenge and why I will never stop! As I sit here tapping on my keyboard I’m not quite sure how to articulate such emotions, as they go to the core of me as a Father; essentially they express my innermost fears and vulnerabilities. So please stay with me and I’ll try my best?
I can’t mend Seb’s heart. Like any CHD parent I wish I could take away all of his pain, suffering and frailties and allow him to continue his life without the fear of facing further invasive heart surgery. As a parent of a child with a CHD I don’t have a feeling of guilt, rather a feeling of utter helplessness. A feeling that every night when you go into his room and kiss his perfect little head, it may be the last time you see him alive. When I run I think of this, I think how amazing it feels when I see his smiling face every morning, how special it is for him to say the words “I love you Daddy” and how I will never take for granted the most simple of gestures.
My current training regime requires me to put in hours of training each day, often including very early starts. This just seems so mad because for over 20 years as a competitive athlete, the thing I hated most was the early morning runs; I simply despised getting out of bed any earlier than I absolutely had to. Yet I currently find myself setting my alarm before 6am and happily training for 2 hours prior to work. As I head out of our peaceful house for my morning 10 mile run, I remember Seb in Intensive Care and remind myself why this matters. It is not uncommon for me to shed a tear or two whilst running, as the effort gets harder and I need to take myself back to the hours when he was in theatre and the fear Nadine and I faced.
So when people ask me why I train so hard or how I am going to complete my 100mile24hour run at Easter, the answer seems so simple. I give myself no option! This is about me doing my little bit to try and help Seb and all of the other vulnerable CHD children out there. When the pain increases to new levels during the 100 mile run, I will take myself back to that day on 5th May 2009 and will remember, I’ll remind myself why I am doing this, I will look at the scar on Seb’s chest and I will feel the abnormal heart beat that illustrates the faults he still has with his heart and I will carry on. Because if I don’t do that I will feel even more helpless than I already do!
There will be many people reading this that have children with a CHD or other serious condition who know what I mean; there will also be people who will be saying the words “there but for the Grace of God go I”. The weirdest thing with Seb’s particular condition is that he doesn’t need daily medication; he only needs to go to the Freeman Hospital every 6 months and we have been told that on a day to day basis we don’t have to worry about his health. If you met him, you would think he is just like any other normal 3 year old boy. We feel like we are the lucky ones, as we have friends whose children require intensive treatment, constant monitoring and are unable to live ‘normal’ lives. The cloud that sits on the horizon for us is his next surgery and what that will bring. You have this hope that when you leave Paediatric Intensive Care you will never go back, but we know that there will come a day in the next few years when we will be sat at Seb’s bedside watching the machines beep and alarms sound and feel completely helpless again. But for the time being we can get on and live life normally and enjoy every single second.