My journey alongside my daughter under paediatric palliative care was only five months, but I was in that space for several years with Cosette having a rare and complex life-limiting condition. Cosette was just five when she passed away and spent over half her life in the Royal Children’s Hospital, Melbourne.
After receiving the heartbreaking diagnosis of Cosette’s irreversible condition, we met with two palliative care doctors. I will always remember being asked, ‘Do you think Cosette is dying’? It is the hardest question anyone has ever asked me.
I appreciated the conversations I had with the palliative care team, it was a space I could cry, share my fears and talk about whether I would bring Cosette home or have her stay in the hospital.
Nothing is off the cards, one of the doctors said to me early on in the journey
The palliative team helped organise two Make-A-Wish birthday parties in the hospital during covid restrictions in just under a week. I am so glad we did as Cosette sadly passed away just one month later. There was a Princess Party and the Pierce Brothers performed at her second party. We were granted special permission for our whole family to be there. Each celebration was only an hour, but they were the last times we were all together with our precious Cosette. We have beautiful photos from Heartfelt Photography, and we can have conversations about the celebrations for years to come. Memories I will treasure forever.
I have a voice recording of Cosette wanting a real haircut (it got so knotty in the straps of the full-face oxygen mask). Unfortunately, this could not be granted due to covid restrictions. I feel sad listening to her wish knowing it didn’t happen. The requests of those who are dying may seem small, but there should always be ways of supporting the palliative care team to make these experiences happen – even in a pandemic.
A palliative doctor gave me a bracelet at the end of Cosette’s farewell, with her name and fingerprint on it that I wear always. It is not just the treasured gift that is special, it is the story behind it that the palliative care doctor and nurse shared with me. The bracelet was meant to be a Mother’s Day present. They supported Cosette in making it happen and asked Cosette to keep it a secret from me (which she certainly did!). They described how Cosette needed to look through every item in the catalogue before choosing mine. They couldn’t believe that Cosette had kept this a secret from me, I loved hearing how Cosette came to choose it herself.
We were planning the next adventure with Cosette in the TLC ambulance to the aquarium, but sadly her health declined so we couldn’t go. I was always looking at possibilities to bring joy to my little girl’s world.
The most important thing is that I have beautiful memories and brought her some special experiences in her last months
I chose to be in the hospital as Cosette’s Mum, not in my longstanding carer role, whilst being well supported by the nurses and medical teams.
Because of Cosette, I will be forever changed.
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