I am a mother of two children: my toddler, Jasper, and his big sister Lily, forever ten months and 15 days old. Lily was born with a terminal brain disease and she died after a struggle with intractable seizures, on July 22 2017.
My first year as a new mother was incredibly hard. As a first-time mum I had to grapple with becoming a special needs parent, a parent of a terminally ill child, and finally a baby loss mother.
How I longed to be raising a healthy child that I could watch grow up. But it was not meant to be.
Watch: A tribute to the babies we've lost. Post continues below.
When Lily was alive, I lived each day in survival mode. There were terrifying nights and medical emergencies. But I tried my hardest to cherish every moment.
Lily loved being at home with us. My husband and I set a goal that we would try to avoid hospital so long as it was supported by her medical team and we could cope.
We are proud (though heartbroken) that she was able to die peacefully in our arms at home.