'The sacred, devastating honour of being at your child’s first and last moments'

I can hear you calling me as clear as a bell in my head, as if you are in my arms. I can feel the comforting weight of you on my knees. I take such comfort in the echoes of you that fill the space you once did. 

But how I miss you, my son."

To stand in the aftermath of the death of your child is to witness the end of the world and still find yourself breathing; the gloriously precious, painful and utterly unfair gift of life still yours, but not theirs anymore.

Our lives changed forever in January 2018 when our beautiful, bright three and a half-year-old son Oscar was diagnosed with a devastating brain tumour called DIPG. 

It is a cancer that cannot be cured and while we could halt its growth temporarily with treatment, we knew from the moment of diagnosis that Oscar could not survive. 

What followed was the most terrible, beautiful and meaningful time of our lives.

For nineteen months, the three of us woke up and knew the weight and value of every single day for the precious gift it was. 

No nameless moment of joy was overlooked. 

We did all the big trips, days out, family holidays, Christmas Day every month. We basked in the extraordinary ordinary of everyday things, of lazy days in bed watching movies, playing with toys, cuddles and bath time. We had all the riches of the world while we had each other and chose to focus on that while the walls around us silently closed in.

Few and yet too many know the sacred, devastating honour of being at their child’s first and last moments and the black hole of grief that swallows you afterwards. 

Grief isn’t simple. It’s a complicated, shape-shifting beast. One minute soft and the other snarling. It is a boiling, bubbling mix of everything good and ugly inside of you, of every emotion. And sometimes none at all. 

It can leave you as cold as stone, frozen in disbelief and sorrow. Or overcome you. 

We quickly discovered that to survive grief wasn’t to conquer it, or move past it but to learn to live alongside it. To nurture it, to accept its place in our family and to honour it as best we could. Some days you can wake up and take grief along with you, it can inspire goodness and kindness, giving and empathy.

 It can make you see all the fleeting beauty and wonder of the world and truly take in and appreciate the brief opportunity to exist. Other days it can drown you in anxiety, make you tired and overwhelmed, bitter and broken. 

With the death of Oscar part of us died too, never to return. And it took us quite a while to realise that the death of our old selves was something we had to accept and mourn also. That we would never be able to fit into the shoes of the old us, and our old lives.

Grief doesn’t shrink, but you slowly grow the muscles you need to carry it. 

You learn to navigate the hard days with kindness and care and to leap into the days you feel the fire in your belly for getting out in the world. That’s why Oscar’s Kids exists. To channel our grief, to make it work for its place in our lives. 

Oscar beat cancer every single day by choosing joy, and that’s exactly the gift we hope to pass onto other families. To show them they still have the power to create some of their best memories. That there is still a life to be lived to the fullest. We are there for all the fun stuff, the trips, the big days out, toys, celebrity videos, the lot. We cover bills, fuel costs, hotels needed for stints up in Dublin for treatment. 

We are there for calls and tearful chats whenever a family needs to vent or ask questions. And we are there at the end. To create magic at home in the final days. To cover funeral costs, to check in, to talk, to remember siblings, to mark anniversaries and birthdays. 

To remind parents their child will always matter and have a place in our club. Oscar’s charity is a labour of love and our beautiful boy’s legacy. His testament to the power of his life and how that can echo through all the days ahead.

The longevity of a persons life does not dictate their worth. 

Life is a lottery. To be here at all, for even the briefest moment, when darkness blooms into consciousness, is an incredible feat beyond measure. 

To stand in this place and look upon it. To love and be loved. To find joy. To spread kindness. Everyone, especially those taken so soon, should be defined by how they lived. Not how they died. 

Oscar lived a big, brave, beautiful life filled with love. That’s all any of us can hope and strive for.

You can follow Yavanna and Lar's journey here.