“There is only one thing more precious than time and that’s who we spend it on” Leo Christopher
I’ve been quiet on the blog front lately, not for any other reason that just because I have been busy. Freya caught an infection and we spent a couple of days in PICU. We had a wonderful Christmas at home with our friends and I spent a lot of time googling how to make Finnish Christmas food (I swear you need a PHD in chemistry to get perunalaatikko right). Any then I lost the charger to my laptop. But as 2016 draws to an end I wanted to write this entry. It’s about the concept of time – another word Freya has redefined for me.
Freya has introduced me to long waits. 140 hours of contractions. 22 hours from her being pulled out of my stomach to me holding her. Month and a half until we could finally bring her home. 318 days in hospital during her first year of life. Longest wait in resus until we got retrieved? 12 hours. Longest we have ever had her home – in one go – without hospital admission? 67 days. Sometimes, the time stops and every second feels like an eternity. When the monitors are beeping and the values flashing are critical. Will her oxygen levels pick up, or will this be it? The anxious hours of waiting during operations (even during the last one when we were just so exhausted that we fell asleep in the park). This little lady likes to make us wait.
Time will heal most things, if you let it. The world is full of people who have defied the odds and gone on to live full lives after illness, war, losing those they love. Whereas pain and loss is something that becomes intrinsically part of us, it won’t necessarily be the stuff that defines us. The resilience of human spirit is truly inspiring and lives inside all of us. First months after Freya’s prognosis were the hardest of my life. The only thing that kept me going was that there was this little person who needed mum and dad and that we needed to be there for her. But with time it got easier. It’s not Freya’s fault she was born with little jaw and wonky ribs – as any other baby she deserved parents who love her and surround her with laughter and joy. And as time passed that love, laughter and joy grew and started pushing out the fear and bitterness. I’m not saying it’s all honky dory now, but what I’m saying is that it generally easier than it was before. So, however much something hurts now, the odds are that next year it will hurt less. Or in 10 years. Still not convinced? However bad it is, in 100 years’ time you won’t be around to worry about it!
Time is precious and limited. I think it is easy to forget this. We get busy with our lives and chores and forget to appreciate what is in front of us. Stuck at a job you don’t like? Get another one. Think you are too fat / thin / flabby? Get a regime in place. Negative people around you bringing you down? Ditch them. Change isn’t easy and can take a lot of work, but ultimately it is you who holds the reigns on this one. Will you succeed every time? Hell no, but at least you tried. Whenever you can fill your days with doing things you love and people who make you smile. If you can’t find goodness and joy in your day-to-day life you are destined for a lifetime of grumpiness and feeling inadequate. Saying that though I do not mean that you need to get through every obstacle in life by grinning and bearing it. We all need help sometimes and if you do feel that you are stuck in a rut and nothing is getting better then seeking help is the most important first step you can take.
Freya’s taught me about the importance of today. Quite frankly I, like a lot of parents of chronically sick children, do not have the luxury of dwelling in yesterday. Yes, there are experiences – good, bad and ugly – that will always be with me, but dwelling in them rarely achieves anything else than anxiety and heartache. I could think about how our lives could be so different had we chosen different roads when we faced junctions in the past, but, again, that won’t get me anywhere.
Similarly, I rarely allow myself to think about tomorrow. Yes, things could become easier – in her short life Freya has already proven so many people wrong and keeps surprising us all with her resilience every day. Even in the tiny little cerebrocostomandibular syndrome community there are many who fight and keep beating odds stacked against them and this inspires me greatly. Medicine advances every day. How our bodies adapt and grow around the anomalies nature has thrown our way is simply astounding and well beyond human comprehension. So, I hold onto hope, and keep my mind and heart open for miracles. But l also know that the road in front of us will, at times, be hard and there will be no guarantees one way or another.
Let me tell you a secret – those guarantees do not exist for anyone else either. None of us escape loss and pain in our lives. Some just have it higher on the richter scale. What Freya has taught me that today is the day look after and celebrate those you love. Today is the day to laugh and to find joy in our lives. The biggest tragedy we face in our lives is not sickness, not even losing people we love. It is stopping living our lives because we are scared or disappointed with the cards life has dealt us. So, as new year approaches celebrate your life and the stars you have in it. May 2017 be the year you reach for your dreams!
P.s. One more reason why I haven’t blogged for a while is because I was busy writing another article for the Complex child magazine. It comes out on 2 January – check it out at: http://complexchild.org/
Posted in: Living with a chronically ill child