Jalene’s story: “Part of my soul left with Jalene when she flew away”

Jalene loved the Tinkerbell films and so to prepare her for what would soon come, we explained that all children eventually grow up and leave home to live their lives away from their parents, and that when the time came, she too would leave home. But we wouldn’t be able to go with her.

She was going to live with Tinkerbell and all of her friends in Pixie Hollow, the homeland of all fairies. We chatted about how much fun she was going to have, how she would be able to run and skip and dance. How she would even be able to fly.

Beating the odds

Jalene was adopted. We used to tell Jalene that she was loved so much by the storks that she wasn’t delivered to us until she was two years old.

Jalene came to us to die. We were well aware of her diagnosis and all of the care that she would need. But Jalene defied the medical profession so many times. She was expected to live only six weeks, but in fact she lived seven more years.

Just like any other little girl, Jalene loved to dress up, and her cerebral palsy diagnosis didn’t stop this. She loved sequins and makeup and jewellery. I bought her lots of princess and fairy outfits and she went for a makeover twice which she loved. She adored the attention.

Jalene required complex, 24 hour care. She could never be left alone. She had hospital at home care, which including feeding equipment, oxygen, suction machines and a ventilator. We had support through the night and they would wake us if Jalene required resuscitation because she had had a seizure and stopped breathing.

Fun times

Throughout Jalene’s short life we would visit Tŷ Hafan Hospice once or twice a year for a respite break. At first Jalene would go alone so that I could spend the week resting and reviving at home, but she missed me too much, and so before long we did the visits together.

We spent many happy weeks at the hospice. She would dress up, have fun in the sensory room, do crafts and listen to beautiful music. I could enjoy our time together because the amazing staff were taking care of Jalene’s every need. We were so happy there.

When everything changed

In March 2020 everything changed. Jalene was in hospital when the PM announced the first Covid lockdown. It was terrifying. I watched from her bedside as the intensive care staff prepared for what looked like war. I could see them donning their PPE, ready for the fight. I was alone and it was a very scary time. Nobody could visit and I couldn’t leave. I stayed by her bedside every moment of every day until she was discharged a month later. We knew that time was short, and I didn’t want Jalene to die in hospital without the rest of her family. I had to get her home in time to say goodbye. The medical team thought she might die on the way home. But she didn’t. Odds defied again.

The final months

When we got home, life was very hard. I stopped any carers coming into the home because of the risk of Covid which meant that my partner, Jalene’s sister Sara and I provided all of the care. We did everything, day and night.

We knew that Jalene was dying and her body was starting to fail her. She looked so bruised, but the weather was lovely and so we went into the garden so she could listen to the birds and hear her wind chimes. We still played to make things as good for her as we could, but we all knew she was fading.

By the end of May 2020 we agreed for one carer to come back in for the nights so that we could have a little sleep.

Helping others

When I read in Together for Families that Together for Short Lives were looking for parent volunteers to help host the Facebook Virtual Cuppas I put my name forward. I did it from my bed, in my PJs. I had been a member of the group for a long time, but I had never had enough time to participate before.

During the Virtual Cuppas I spoke to other parents about all kinds of things, and enjoyed their company. It was nice meeting and chatting to other families online.

Life now

Now I am a bereaved parent and the pain is unimaginable. My own physical health has suffered and some days, it’s hard to get out of bed.

Jalene always came first. I had cancer eight years ago which required an operation. I spent my recovery at Jalene’s hospital bedside when she developed sepsis. A few years later I was recovering from a follow-up surgery when Jalene was again taken to hospital. Once again, I recovered on her hospital ward. I sat next to her and held her hand for five months. I didn’t go home once.

My daughter was an amazing little girl who confounded the medical profession with her tenacity for life. She loved life. She sparkled wherever she went.

Now she lives at Pixie Hollow with all of her fairy friends. Her middle name means ‘starlight’ and with this special power she can transform into a mermaid and swim with the dolphins. Something that she didn’t get to do when she was alive.

There are no limits to what Tŷ Hafan Hospice will do for families like Jalene’s.

More and more families like Jalene’s need the help of children’s hospices, and the hospices need to be supported to continue.

Will you push yourself to your limits and fundraise, so children’s hospices aren’t pushed to theirs?