Picture – A sunrise from my window reminding me there is a new day.
It is coming up to my twin girls 9th birthday. Fossicking through magazines for party ideas and long conversations about potential games to play warns me of what I am in for when weddings finally arrive on my doorstep. I should start some preemptive counseling sessions now to get ahead of the game! Oh God, if you are truly real – save me now…
Even amongst the fun, it is in moments like these I am reminded that celebrations are still done with a lump in my throat. I think I am just so used to it now the lump has become a permanent anatomical feature. Occasionally I am reminded how close I still live to the edge by life’s nonchalant but brazen honesty. It is such an intense collision of emotion and feels as though I have my own electron positron collider in my gut with a personal ‘God Particle’ living inside.
I wrote a blog a while back called ‘Special Dads’ and recently someone posted a comment highlighting to me again how people’s honest reflections can award us the gift of realness. This person’s child had been diagnosed with a rare genetic disease and was lamenting as they watched other healthy families enjoy life so effortlessly. They have been confronted with a very real pulse check as they contemplate their ability to cope and bothered by their internal conflict – if given the opportunity would they choose a different path.
So why is this kind of self-check awarded to people who are already in pain? It feels unfair that the gift of realness also means that pain has an edge that others may not fully appreciate. If I were on the human design team, I would have created a circuit breaker that permanently disables the ability to feel pain after a certain threshold is met. Oh… I would also insist that these people no longer have to pay for movies or chocolate.
I am 9 years down the track now with my daughter Sunshine who has Cerebral Palsy. Yes, of course I think about birthdays, weddings and love. As my daughter Jazmine reaches each milestone I celebrate like any other parent. But then in an instant what was a beautiful moment becomes an unbearable comparison and full of lament. This can all happen in the time I fill my lungs up with fresh air.
Even still, 9 years down the track I have changed. No longer do I hold my shield up to deflect the pointy arrows meant for my heart, these days I am more likely to allow them to penetrate deeply feeling the pain and fully embracing what life has to offer (Don’t be too fooled by my resolve, I still act like a maniac sometimes).
Some people in chronic situations reflect on their life frustrated that in their world nothing has changed, but that is not true. The situation may not have changed but they have – it can’t be helped. It is like observing a glass of water coming to the boil. The glass may not change but the water does. You have changed because you observe things differently, you value things differently and you love differently.
I used to reject the comment that time heals all things – actually I still don’t believe that, but what time does do is gives us the space to come to terms with our ‘new normal’. Strangely for me the pursuit to numb the pain has subsided and now rather than wishing a different path, I simply cannot imagine it any different. To exchange my path with a easier one would also mean I would have to hand over my life’s lessons and more importantly the memories that are now so ingrained and unbelievably important to me. Like watching the sheer delight when Sunshine’s cochlear implant was turned on and she heard for the first time. I cannot remember a time were I have felt so alive. For this to happen and hold any substance, pain had to be a core ingredient.
My new friend who posted on my blog has just started their journey. Like many of us, pain sits in the corner of our heart like an unfriendly traveling companion. Time allows us to get to know this companion and even learn to appreciate them. As we do life together, I pray and trust that your journey will be real and honest, allowing the good times to be contextualised and made more significant through the brave choice to live with a lump in your throat.