Here, Lyla and Jensen's mum Michaela explains what hospice care does for her family.

Michaela and Martin Rich are from Sleaford. Their children, Lyla and Jensen, have a genetic illness called nonketonic hyperglycemia (NKH). It means the body is unable to break down or process some of the building blocks of protein.

Lyla, 5, and Jensen, 3, have attended the hospice from birth for respite. Jensen also has type one diabetes.

"Before Lyla was born, all of her scans and tests were normal," said Michaela. "She was born normally - in fact, she was eight days late. It was two days after her birth that she became very quiet and stopped feeding, and was taken to Intensive Care.

"By day five, she was in a comma and we were told that she wasn’t going to make it. That was just before Christmas. We had an emergency christening on December 28th but then she began to pick up.

"During the christening, as the reverend was reading, Lyla started gagging on her tube and began to wake up. She was pulling at the tube, trying to get it out of her mouth. That’s what Lyla is like. She takes us to the brink.

"A hospice representative visited us on the ward. We were still very worried at that point, as we’d been told she wasn’t going to make it beyond a month. I was setting my alarm every six hours to do medication and feed. I felt more like a nurse at the beginning, rather than a mum. It wasn’t until she was about 16 months old until I felt that motherly bond; it was then that I truly felt like a mum.

"Here we had a child who was our responsibility and, at that time, I did not want to pass her to anyone else to be looked after, just because she had an illness. She was supposed to be with me, her mother. When the hospice came, they reassured us that it was ok. If we wanted to stay with her at the hospice, then that was fine.

"They just wanted to make sure we were ok, and that was one of the biggest things for me. Our situation means we are always running around – I also have two stepsons – and I can’t remember the last time I had a cup of coffee which was hot at home. But I always get one at the hospice because it gives us time for ourselves, and that’s so nice.

"Lyla and Jensen enjoy ‘messy play’ activities at Andy’s, like hand and footprint painting, because I don’t normally have the time to do that at home. With four children, there’s enough washing up to do already! So when they take part in ‘messy play’, there’s beads and rice and all sorts, and it’s just great.

"They also have hand and leg massages, and Lyla has had Reiki and reflexology too. There’s lots of different things for them that I cannot access or wouldn’t know how to, were it not for Andy’s.

"The hospice is a safety net. Even when I phone, they always ask how I am, and Martin, even the pets. They know the whole family, and what we like and don’t like.

"I had no concept that the hospice was there before I had my children, to be honest. My level of understanding about disabilities was zilch, as was my understanding of new-borns. Hospices, to me, were about palliative care for adults… people with cancer or other illnesses which were going to end their lives. I knew that there were disabled and life-limited children out there but I would not have known where to have gone for help. That help had to be handed to us and we needed to be guided, and thank goodness we got it.

"I’m a very well put together person. A lot of it is thinking logically about the situation but also about being able to be myself. I make a lot of jokes because I think it’s better to be cheerful about things and approach them positively rather than being down.

"I have got a lot to moan and whinge about. Both Lyla and Jensen are life-limited. They won’t hit double digits. Lyla has already tried to pass away four times; I had to resuscitate her in the back of my van last year to keep her here. I have lots to complain about but what is it going to fix? It’s better to say my children are quirky and I love them. I constantly give all four of our youngsters cuddles, kisses and love. It’s definitely my sense of humour that gets me through.

"I cope by starting the day with a kiss and a cuddle, and saying ‘I love you’, and finishing the day in the same way. That’s really important because I have faced situations where I thought I would never be able to do so again. The day when Lyla’s heart stopped last year began normally and like any other. By lunchtime she was gasping and her heart stopped beating. If she had not come through, I wouldn’t have been able to have told her I loved her, so it’s so important that you let them know you’re there for them. Whenever I’m near my children, I kiss them or rub their hands or feet… anything to let them know I’m always there. That way, I can never have any regrets if they leave me.

"There are so many things about the hospice that people should be proud of. It enables me to let go. When we arrive, the older kids run off and play on the snooker table. I feel a sense of relief when I’m there… you can’t really put it into words. It takes 90 minutes to get there, and at one point, Lyla had terrible body spasms. She cried for the entire journey to Andy’s, and as soon as we walked through the front doors, she fell fast asleep. I can’t sum it up in any other way. It de-stresses me, and it’s like a family to me. It’s that sense of caring and support. I feel so much more upbeat after I’ve had contact with Andy’s. There’s always laughter and never any negativity; it’s a vibrant place, and has so much energy because there’s so much going on all of the time.

"I cannot praise the staff and volunteers enough, just for being there never mind anything else. They are very positive, happy and exuberant. It’s not just about the patient; I flourish when I’m there. I love going there… and the coffee is alright as well!"

The Make A Wish Foundation donated a hot tub to the family to ease Lyla’s spasms, but they only use it infrequently because they need a hoist and an enclosure to use it safely. The family are currently raising funds to purchase the equipment.

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