“Jalene was our baby. My partner, Dave, and I decided to adopt her together. We fostered her initially. The placing authority got in contact with us and asked for us because of my nursing background, I was a scrubs nurse in Morriston Hospital in Swansea until I had to give up work through ill health.
“With five grown up children of our own, we took on Jalene when she was two. She had already spent a lot of time in hospital in the two years of her life. It was in hospital that we initially meet her and it was from hospital that we took her home for the first time on May 7, 2011.
“Jalene was at the severe end of cerebral palsy. She was quadraplegic. She could not sit up, could not eat, she was entirely tube fed and non-verbal. But she could point with her eyes. We would hold up her clothes so she could choose what she wanted to wear and we had a computer for her which she could use with her eyes.
“She was just such an amazing little girl. She stole my heart very quickly.
“Jalene was nine when she passed away in July 2020 – it's coming up to the first anniversary of her death. She lived a long time, considering she was only given six weeks to live.
“We had a lot of support from Tŷ Hafan during the seven years we had her. We would come down and have two weeks at the hospice every year. Sometimes Jalene’s big sister, Sara, used to come with us. We’d have a girly week away.
“Jalene used to sparkle, she would love the fuss. It was amazing. Life would have been extremely difficult without Tŷ Hafan.
“The nurses would just all carry on – doing all of Jalene’s care which meant that I could spend nice time, quality time with her.
“She especially loved the singing and all of the action stuff. She loved participating in her sparkly dressing up clothes.
“Jalene also loved the sensory room with lots of lights. She was partially sighted so that really worked for her.
“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.
“I miss my little girl endlessly. Part of my soul is now in Pixie Hollow too.
“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.
“Jalene required complex, 24-hour care. She could never be left alone. Her Consultant said that she needed 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.
“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. While in Tŷ Hafan she received 2:1 care. We were so happy there.
“In March 2020 everything changed. Jalene was in the intensive care unit in Cardiff 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.
“Jalene was life-limited but she had had so many close calls that a part of me thought that this was just another one of those and that she would bounce back again.
“But I knew that I didn’t want Jalene to die in hospital without the rest of her family around her. 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.
“When we got home to Carmarthen, life was very hard. I stopped any carers coming into the home because of the risk of Covid which meant that my partner, Dave, Sara and I provided all of the care. We did everything, day and night, taking it in turns in shifts. It was exhausting.
“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.
“Jalene died at the end of July 2020 at home. We held her close and whispered into her ear. She had her fairy lights on and we listened to her favourite classical music.
“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.
“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.
“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.
“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.
“I miss her. We all do. My heart has been ripped in two. For the rest of my life I will be missing a part of myself. The part that will forever be where my precious daughter is now.
“Tŷ Hafan is an amazing place. It is filled with so much love, light and laughter. The people are so happy, and they give so much to the children.
“Life would have been very, very difficult without Tŷ Hafan. As well as our times in the hospice, the outreach we had at home was amazing with play specialists coming to the house. Jalene absolutely adored Gemma. Then she had music therapy with Heather then complementary therapy with Beccy. You just could see her melting, it was so wonderful.
“There was also great support for me as a person – Tracy Hill was our designated worker. She was absolutely amazing and she still is now. Beccy is still supportive too. But it is still all so hard because of Covid.
“Tŷ Hafan definitely needs much more financial help. Lots more families need the help they provide. And it would be great to have a Tŷ Hafan hospice out west but there is not the money, is there?”