Living with Cerebral Palsy 🍋🍋

Wednesday, 9 October 2019

Blissfully captured.

For mental health awareness day tomorrow, a little story of how sometimes you have to face what scares you, until it doesn't anymore (but only when you are ready)
These photographs sat in a drawer in the spare room for ten years. This was my first cuddle with Elin without tubes and wires, when she was still in ICU following her birth, but had finally come off the ventilator. I was 26 years old and petrified. She was still very, very poorly. Paul took them because he noticed the July sunlight was shining through her cot-side window and the amateur photographer in him realised it would make a nice shot. It was a proper camera with a film and we had to wait for these to be developed. That seems crazy now. But, I'm glad they weren't taken on an iPhone. I really treasure that memory, of the photo's being taken on that big camera with the flash. It felt, for the most fleeting of seconds, like we were a normal family.
However, for the longest time, I could not display these newborn pictures. I just could not look at them without remembering the utter horror and trauma of the moments before they were taken and the moments that followed, and continued to follow for months (years). I loved the photo's, but I hated them too. They represent such a juxtaposition of hope and despair, of elation and devastation, of love and fear, of grief and gratitude.
Then Elin turned ten and something in me changed. Ten years is a milestone. It's a long time to be hanging on to trauma, denying a happy memory for fear of unearthing a million unhappy ones. For a while now, things had been feeling so much better. Elin has been doing amazingly well. Horrendous memories were definitely fading. I began to volunteer on the Special Care Baby Unit where Elin had been born, through the neonatal charity "Bliss". I had been Chairperson of the charity attached to the unit, Cherish, for many years by now, but that rarely involved visiting the unit itself and almost only ever involved conversing with parents who had long since left the unit with a recovering baby. This volunteering was different, it was to consist of going to the unit weekly and speaking with parents who were once in my position, right at the start of their journey as parents, some with very sick babies. It's providing an understanding ear to them in a harrowing time and hopefully helping them through, just by being someone there who knows exactly how they feel and has come out the other side. When I did my training with Bliss, I wondered if I would be able to carry out the role effectively, without re-visiting my own terrible memories of the first few weeks of Elin's life and letting them consume me again. I wondered if being there, immersed in the stories of others might set my mental health recovery from what happened to Elin (and I am always still in recovery) back a little. But somehow deep down in my gut I knew I was ready and that it was the right time to take on something like this. I had an urge to support other parents by doing something I think I would have benefitted from at the time we were on the unit all those years ago (though it has to be said the support from the amazing nursing team at this time was incredible. I never got over how wise them seemed, how easily they could comfort me. Nurses by trade, unpaid counsellors on the side)
The result has been one of the most rewarding things I have done. I've been volunteering for almost twelve months now and I have loved it. I think I was worried I may be transported back to one of the most difficult periods of my life -a period where we realised life would never be the same again, a period that was the start of 11 years of trying to come to terms with her ultimate diagnosis- in trying to help other parents. In fact, I couldn't have been more wrong. It's been so fantastically positive an experience. It's hard to explain, but it has normalised our time on the unit for me. I have seen incredible, amazing parents go through unthinkable things in the past few months. They have never failed to astound me with their strength, not a single one. I have been utterly inspired by them. These things happen and they happen again and again. It's life and it's how we deal with it that counts, because what else is there? It isn't, and was never, just me. We are not alone. The feelings I had, which I had been so scared to re-visit in keeping the photo's in the drawer, have been echoed back to me scores of times over the past twelve months in my role. It brought me a clarity and sense of peace I never considered when I thought about volunteering.
After I had been visiting the unit for a while, and ten years after Elin's birth,  I came across these photo's when searching for something else. Suddenly, I was really cross with myself for hiding them away. I made a snap decision to frame them and put them on Elin's bedroom wall. Now I look at them every day, we look at them together. Not once have I felt my heart pounding, or my stomach sickening, or my palms getting sweaty. I just feel joy. It's blissful to feel freed of the negativity that I once attached to these photographs so lovingly captured by Elin's Daddy. It took a long time, but I understand now that I had to be ready. It turns out that facing my fears, actively putting myself back into the environment that initially held such difficult memories for me and hopefully providing a little support to those trying to heal themselves, has helped heal me a little too.
"Nothing in life is to be feared. It is only to be understood"
Marie Curie.

Mental Health Awareness Day October 10th 2019.

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