“We are referring you to a children’s hospice…”
These are not the words that you would associate with your beautiful newborn baby.
After two months in the NICU we were expecting to take our baby home like every other family, but we were told that we would be referred to Keech Hospice Care and its children’s service.
All I remember is the numbness.
I couldn’t process it all. We weren’t told why or what they do. We were just told that our eight-week-old daughter was being referred to a hospice.
As the weeks went by we ignored the calls and letters. Seeing our daughter’s name on a letter that said she was accepted for palliative care at Keech made us feel sick.
It wasn’t until we were back in hospital after having Amelia home for a week that we knew we needed them.
Keech Hospice Care and its children’s service came into our lives and picked us up and told us that we would be ok. They are real-life walking angels.
From that moment on they have been there for us whenever we need them.
The first time we went to the hospice it was nerve-racking. I was scared and so was my husband. It felt odd to take our new nine-week-old baby to a hospice instead of a sensory or music class.
As soon as we were welcomed in I immediately felt safe. I felt like I belonged. There were no stares, looks or whispers…just lots of parents who knew what we were going through.
Finally, I felt normal.
I felt like I was accepted and that I could do this. I could be the mother that Amelia needed me to be.
As the weeks, months and years went on, our Hospice showed us time and time again how amazing they are. Covid really hit families like ours hard but Keech never stopped caring! We were able to make memories during a worldwide pandemic with our children.
There have been Zoom classes full of music and activities, play sessions, outdoor events and so on. They have been there for us through everything.
Not only do they provide the most incredible care for Amelia with daycare and sleepovers, they also help my eldest daughter, by making sure she is included and creating memories with her sister.
Being parents to a child with a life-limiting condition is very tough and navigating the new world around you is scary but our hospice is always there to guide us, help us and be there for the hard times.
We are now able to go back for music classes with our families which is incredible. Being around other children and parents is so special and having people just get it really means so much to us.
Our hospice is our lifeline.
I honestly do not know where we would be without them.
They are the shining light that helps families like mine enjoy the time they have together. A hospice isn’t just about end of life care…it’s full of joy, laughter and love.
Our hospice is an extension of our family and I will forever be indebted to the wonderful nurses, play specialists and doctors who have enriched our lives with Amelia.