Love, happiness, loss, grief and Esperanza March to August 2016

2016 started off as the happiest of my life.  I was  pregnant, we were expecting a  gitl. Finally after 4 years of heart ache,  worry,  stress, and sadness our dreams of having a family were finally becoming real. Then, one day at the end of March, at 34 weeks, our final ultrasound became the door to hell that opened and what would follow would easily the most difficult experience I have ever had in my life. They found stains on her little heart. Then countless visits to Vall d’Hebrón hospital with various experts,  and tortuous waits in waiting rooms with happy mums to be revealed that she had a rare disease called Tuberous Sclerosis that had spread to her brain. This would mean a life in and out of hospitals and a wide spectrum of symptoms such as autism, behavioural issues, learning disabilities, organ failures, epilepsy...not a life at all by any standards. We took our time and weighed our options with great care and compassion. Our hearts and minds were at war. We had waited so long for this little miracle, and right when it was within our grasp, it was being ripped away from us by a cruel twist of the universe. How could we bring a life into a world of suffering and heart ache.

In the early hours of April 13th our hope was born at 36 weeks just 4 weeks shy of full term, but she had already left this world as we decided to say goodbye to her on our terms. She was beautiful and heavy and perfect. We spread her ashes in a beautiful clearing up in the Pyrenees in Font Romeu and held our grief in each other's arms. Letting go of our little Esperanza. Rodri, the most amazing man in the universe, by my side every step of the way.

After a magical trip to India, based in Goa and Mumbai, we came back and started healing. Our families came to say their goodbyes, each with their own personal ritual. It was simultaneously heartbreaking and heartwarming, and so special.

We feel strong and capable as we work through our grief, each in our own way, and together, united more than ever. Now, with a new and exciting role change in my job and both of us back at work, we are finally starting to find our footing, working on our bodies and our minds.

2016, you will not defeat me. I'm not done with you yet.