Jo’s Story

In June of 2018, our lives were changed forever.

On Friday 25th May, we were gently told that our beautiful boy, Ed was tiring and that he was heartbreakingly reaching the end of his life. Although deep in our hearts we knew that Ed was becoming more unwell and tired, these words spread through us physically and filled us with a heart-breaking ache and silent cry that will always remain.

For 26 days, the team at The Donna Louise Hospice – nurses, carers, doctors – gave us the most precious gift any life could receive. Intuitively, they took over all of Ed’s medical care and made it their aim to allow him to be pain-free and to be comfortable. This allowed us as Ed’s Mum and Dad to connect with him, purely as his parents. To connect through love day in, day out. Myself, Mark, Rory, Becca and Issy, grandparents and cousins, aunts, uncles, and very dear friends were able to spend days and nights sharing our time in love and peace with Ed.

Ed’s beautiful room at The Donna Louise became more and more like home, and we were blessed to have back all of our time with Ed as his Mum and Dad; time to love and hold each other. Two beds were put together to create a family bed. We lay together, we laughed, we cried. Sometimes we listened to music, and we watched the stars move over his ceiling like the northern lights. We kissed, we held hands and we spent amazing hours together peacefully soaking up our beautiful boy, breathing in everything about him.

The day your child is born is life changing. It is frozen in time, locked in your heart the capacity to love opened up like no other experience. We now know the day you say goodbye to your child is as precious as that moment of birth. To hold your child’s face, to breathe them in and to hold on to their smell are exactly the same moments you never let go of. In the moment that we had to say goodbye to our precious beautiful son this is exactly what we did. 

Only because we had this time at The Donna Louise were we able to have this precious connection. For the seven days that followed our son passing away, we were able to stay with him as a family in the Garden Room . Holding him, kissing him, talking to him and whispering to him. To have been guided to this point, carefully embraced by the loving care of The Donna Louise staff, will be the most powerful experience of our life as a family.

They gave us the most precious end of life experience we could ever have wished for. Had we had to say goodbye to our son in hospital or alone, our heartbreak would never have had the incredible comfort we now know. The words break through my heart but they are true – there is a good way to die; surrounded by the connection of love, allowing beauty, grace and thanks. To touch the skin, the heart and the lips of those you love.

Our last moments with our boy were as complete and connected as they could have ever been, and I shall hold on to them forever.

Birth changes us. But having to physically let go of your child changes the shapes of us forever, yet end of life is planned for, protected in love and beauty at The Donna Louise. It should be here for all families like mine, forever.