“Losing your child, has to be the worst thing in your imagination as a parent. When it happens, to be at Naomi House is the best thing you can do for yourself, for your little one and for your family. It is massive, and they know how to handle all of it.”
Amelia was born prematurely at 28 weeks after her mum, Debra, went into early labour. As a result of difficulties with the birth, baby Amelia had severe brain damage, cerebral palsy, four limb quadriplegia, blindness and very severe epilepsy. This is her story, told bravely by her mum, Debra.
Debra said:
“We spent the first two years of Amelia’s life in and out of hospital, it was such a difficult time for us. Then there was a little chink of light that was Naomi House.”
“All of the time you're facing the future, you see other children in their wheelchairs and you're thinking this is what it is going to be like; it was really upsetting. But talking to the nurse at the Naomi House admission meeting, she really understood. They knew how bad it could be.
“Amelia loved Naomi House. I always used to sing songs to her and make up songs about Naomi House. When we were going there in the car, even though she didn’t like journeys, when she knew she was coming to Naomi House, she was alright. I would always stay with her, even though I knew you can go away, but actually, I liked staying there. It was a break for me and someone cooked your dinner!
“I used to dress her beautifully and she always had lovely dresses and tights and everything matched. Every time we got there, all the nurses used to come in and say ‘let’s see you unpack and see what you’ve brought today.’ That was so nice.
“Amelia loved music and swimming because the pool was nice and hot. I couldn’t take her to public pools because they were too cold. Being an indoor pool was lovely for her and I used to go in with her. It was so funny. The staff used to laugh their heads off because she used to be screaming, laughing and kicking her legs!
“When Amelia was really ill at the end, we went from the hospital to Naomi House. When we arrived, they gave us a big double bed.
"The staff were wonderful and Sid and Daisy came and kissed her and said their goodbyes. I told Amelia all of her life story and sang all her favourite songs for her. She died at about 2 o'clock in the morning.
"Amelia was in the Butterfly room, and it was absolutely beautiful. They let me stay for a week after she had passed; a week where we were there together.
"It is a week that nobody else can give you. It gives you time to cling on together and talk a bit more until you can just about breathe in order to be able to let them go."
"I have blanked a lot of things out, but I remember one nurse saying ‘come on Debbie, I’ve run your bath for you’ and I went and just had a lovely bath. Just little things... but they're actually massive."
On Mother's Day, Debra wrote the most beautiful letter to Amelia in Heaven, which she has shared with us.
When you were born in Cyprus at 28 weeks old, I didn’t think you would live at all, then I prayed every day and stood outside your room, and you survived those first months.
Left with severe cerebral palsy, blindness and epilepsy, they said you wouldn’t live long.
Those first years we were in and out of the hospital, fighting for a decent school, getting physio and OT organised, I was all the time trying to give you a lovely life, but feeling a bit lost and helpless.
Then one day, I managed to get you a referral to Naomi House. It sounded a bit scary, the word hospice, but from the first time we went in, it felt lovely. All of the staff were so welcoming and accepting. You and I would go seven times a year for brilliant weekends. The staff liked unpacking your bag; seeing what beautiful outfits mummy had packed for you, they laughed at the tapes, made for you with me singing (very badly) and telling you stories in my funny Yorkshire accent.
We had brilliant weekends there - you loved the pool; splashing and being thrown up in the air, kicking your legs and squealing in delight. The music therapy was amazing, I used to stand outside the music room and listen and watch through the window, to you making beautiful cooing noises and using your hand to play the instruments. The big blue swing was a great source of fun, we would sit out there with the staff for hours in the summer.
When your sister came along in 2005, we all went together, and even more fun and laughter was had.
We then had a few years of you being so well that we didn’t need to go, that was when we all went to America for dolphin therapy and you looked like you would be strong forever.
Sadly, in October 2013, you became very immobile when your spine collapsed and you had that huge spinal operation. After that, you never seemed to recover. In April 2014 you started having all those dystonic attacks and couldn’t eat anymore. Things got worse, but the only thing that really helped was that we were granted time again at Naomi House, and in September 2014, we spent a few days there. It was like going home, even though you were so poorly you managed a swim with Daisy and me and the nurses, even managing a laugh and a kick.
Then, on Saturday 19th October, after your 16th birthday, it became apparent things were very bad. We dashed to hospital and they organised an ambulance to Jacksplace. When we arrived, you got all comfy on a big double bed and the lovely doctor talked to me and daddy. Daddy and Daisy had lovely cuddles with you then said goodbye and went home. That night the wonderful nurse helped us to get comfy on the double bed together and let me snuggle down with you. Do you remember, Amelia? I told you all your life story and sang your favourite songs, and in the early hours of Sunday, you slipped away to heaven. The nurses were amazing and they put you beautifully into the Butterfly room, everyone said you looked just like a sleeping beauty.
We stayed there together for six days. We had extra time together, where I could still see you and talk to you. Six days where all of the team; Andy the vicar, cleaner, cooks, volunteers, made the worse time ever possible to bear. And afterwards, the caring, supportive counsellor, Sally, helped me through some of the worst time, and the care team was there for your sister, Daisy.
So Amelia, you keep safe in Heaven and keep an eye on your lovely sister and we’ll do our best to keep raising money for that amazing place.
