August 27, 2016
7 years ago yesterday.
Yesterday was the Anniversary of the day that my baby girl was diagnosed with Cystic Fibrosis.
It gets easier…. For us… it does. We feel less afraid – or do we? Maybe we have just grown used to the fear?
Something that I have never shared with anyone is a broken camera that I keep… Right after Rowan was born; Brian gave me a beautiful little camera to capture our lives. It took the most amazing pictures and we sat in our hospital room the afternoon she was born and snapped pictures and played with all of the features. Brian has always been the most thoughtful gift giver – he seems to know what I want or need when I don`t even know it and this gift is no exception.
I don’t think about this particular memory often but for some reason the memory of my broken camera is so prevalent today. On diagnosis day, I wrecked our new camera…. Immediately upon arriving at the Children`s Hospital for the very first time, to basically receive a formal diagnosis (something that we already know in our hearts of hearts) I spill a bottle of Gripe Water all over the bottom of the diaper bag…for some reason I put the camera in the diaper bag before I left the house. Weird Right? The camera was destroyed. Even more weird? 7 years later and I still have that broken camera in the junk drawer. Not to torture myself (although maybe at first that’s what it might have been) – now it has become a touchstone for BEFORE Cystic Fibrosis vs. AFTER Cystic Fibrosis – I don’t want to lose the normalcy of remembering what it felt like before. I don’t want to forget the Contentment I felt right after she was born. I don’t want Rowan to carry the burden of our broken hearts. So being able to keep one foot on the side of “Before” keeps me cognisant of how I want HER to feel about Cystic Fibrosis. That’s the ONLY thing that sets her apart from other little girls; she still loves Shopkins, and puppies and drawing. She has dreams of being a “Reiki Healer and Yoga Teacher” (okay maybe that’s not so typical but a kid wanting to be like her Mom sure is) she hopes to one day be a Mommy and talks to me about if she’ll have girls or boys and what their names will be (I must confess that this one makes my heart ache a little as I wonder if she’ll have fertility issues)…
I still cry today; but I love the fact that I cry more about the past and less about the future. The future is phenomenal as we make greater advancements in the search for a Cure or Effective Control. This isn’t just the HOPE of a Mother’s Heart talking; the science is mind-blowing and given Rowan’s remarkable health so far… I feel a great deal of peace about the future. I become ever more aware that her health and the future is more about HER and less about my experience of learning to live with a Child that has Cystic Fibrosis.
Also? I KNOW we’re lucky. There are kids that are sick. Very sick. Rowan is healthier than most kids WITHOUT CF (thank you “Mountain Man” Immunity) However, we have watched other kids we love go from her state of health to weeks in hospital. It’s this strange little dance of cautious optimism and based in reality pessimism; you don’t know what to protect – your head or your heart.
Here’s what I know for sure. If this is how it had to be to have Rowan – I would not give any of this back. Do you know what it is like to be inspired by your child’s gentle strength everyday of your life? It’s humbling. It keeps me in check. I know for sure I would not be the Woman that I am… I would not know the strength of the bond between my husband and I and I would not know the commitment that our family and friends have to us.
If you know anything about me… I’m going to bring this all back to Yoga… because, you know, that’s what I do. Yoga is the ultimate test in Acceptance, Mindfulness and Grace…. And had Yoga not come into my life in such a significant way I’m pretty sure that I would be typing a much different blog today.
The irony that Cystic Fibrosis is a chronic lung disease and Yoga is all about Breath is not lost on me; I believe with every fibre of my being that there is a connection here… and I’m excited to see how Rowan’s interest in Yoga deepens and how much this connection will keep her healthy – physically and emotionally.
The other thing Yoga has taught me? To be gentle with myself on these days; to ACCEPT how I’m feeling without judgment and only compassion… the world would be a much better place if we all leaned into Grace a little more when we’re hurting. Leaning into this Grace helps me move forward… to pause and reflect and let go of what no longer serves me; past hurts can be tricky and burrow deep in the depths… sometimes you have to breathe and meditate that garbage out.
I found this poem a couple of years ago and it always reminds me to let go so I can be present.
Remove the old garment which no longer suits you
and step bravely into the new one –
weaved from an awareness
gained after years of struggle and pain.
Do not lose sight of who you are
in that quiet space – where only reality exists.
You’ve paid a high price to get here –
no sense in giving it all back.Your life is here and now
Be present for it.
Live it wisely.
Nirmala Devi – 11/07/05