This last week has endlessly thrown up some digital memories of this time a year ago on our phones and social media. Literally a year ago today, July 20th, we were discharged from hospital, 4 days after Elodie underwent open heart surgery.
I cannot believe it’s a year. I cannot believe that one minute she was in a hospital theatre with a machine acting as her heart while her own one had been stopped, or that she was in intensive care hooked up to machines and wires to the next minute being home eating muffins.
Since her ordeal that she overcame so wonderfully and quicker than anyone could’ve imagined, I have spoken to many ‘heart parents’ particularly on Instagram. Those haunted by the fear of upcoming surgeries on their small people. I get that all consuming terror, truly I do. I’ve written a lot about that just here. So when they ask me for advice or tips it is so hard to know what to say for the best, especially as all CHDs (congenital heart defects) are so unique with some being so much more complex, complicated than others. I tend to respond with two things though; 1) don’t over plan what you are going to do with your time during the surgery and 2) have you written some positive affirmations down?
To expand on the first point, and only speaking from my personal experience and perhaps my own innate ways of coping, I assumed that when she was in surgery that I might want to get some fresh air outside of the hospital, take a short walk. But I couldn’t have been more wrong when the time came. John and I sort of staggered away from our girl who had been in my arms until she went all floppy from the anaesthetic (something I don’t think I will ever be able to forget) and was laid down by the medical team and arranged on the hospital bed. We headed for the family room in the hospital. I don’t think I can accurately describe those first moments. Leaving her. Just, leaving her. Having no control. My whole body just aching to be next to her, to stroke away her hair from her soft little forehead. Trying to bat away invading visions of her going ‘under the knife’.
We sat down in the family room and we were pretty quiet. Going about dealing with it in our different ways. And this leads me to point 2 above; positive affirmations.
In the days leading up to her surgery, I had decided to jot down some positive affirmations to flick through as and when I needed something. And boy did I underestimate just how many times I would use them. I must’ve looked like a crazy person just endlessly rotating them in hands, muttering them quietly under my breath. Every time I wobbled I grabbed them again and would shuffle through again and again and again. And then some more.
I used affirmations through our infertility challenges, and again during IVF and again during labour. So, I already had a belief that they would help me. My mind can be a total scattergun of dizzying thoughts at times, but there’s something about reading calming, encouraging words and statements that somehow ground me, make me present and set me straight.
So I thought I would share the ones I used in case they could be helpful to you too. Or someone you know. I used Elodie’s name in mine but have replaced that with ‘my baby’ below.
I hope they help.
Vx
If you are facing the trauma of your child having to go through heart surgery, please do get in touch with the small but mighty charity, Tiny Tickers.