For the past 2 and a half years, Lyanda was in a wheelchair. She was left this way after an unsuccesful operation, nearly 8 years of doctors not correctly diagnosing her since the start. It started as numbness in her left hand, it was diagnosed as carpel tunnel syndrome. Soon after, the numbness was up to her elbow. Then it spread to her shoulder. It was then decided that she had a trapped nerve in her shoulder that was causing it all. The numbness through her arm stayed like it for years.

A few months after the little one was born in 2015, she started getting numbness in her left foot. She went to the doctor again, but apparently this was due to the pregnancy and not related to her arm. Very quickly, the numbness spread from her foot all the way up her leg. She went back to the doctor who then decided she needed to see a specialist in the hospital, so a referral was made. As the weather was getting colder in the Autumn, she was getting worse. Now the entire left side of her body was numb. Although still able to walk at a slower than normal pace, we had to buy a wheelchair just to get her out and about on the bad days. Then an opportunity came to see a locombe doctor. After seeing 7 different doctors across 3 different addresses, options were running out.

Lyanda sat in the surgery, in her wheelchair, explained everything that had happened from the start and cried. She was desperate for a doctor to listen and take her seriously. He arranged an initial MRI scan of her head and shoulders to see if there was anything. When the results came back around Easter 2016, she was instantly referred to a neurosurgeon. We thought this was strange but went to the booked appointment. There was a serious problem with her spine.

At the appointment, he explained that (from memory) c4/5 and c6/7 vertebrae/discs had crumbled and had actually started to sever the spinal cord. As the spinal cord was not repairable, an operation was required to rectify this. The operation was purely to prevent paralysis from the neck down, as any fall or knock could cause this to happen. He was however hopeful the operation would stop the numbness and things should improve. The operation was in 6 weeks, in October 2016.

Reluctantly she agreed to the operation. It was a success in the respect the paralysis prevention worked. Unfortunately, it left her in a worse state than before. Prior to the operation she could walk unaided, albeit slower than normal and slightly hesitantly. After the operation she lost complete use of the left side of her body. From this point on she was wheelchair bound. The pain was unbearable, and she struggled to deal with it. Over the next few months she would be prescribed 7 different medications to try and combat the pain. The same medication, some in larger doses, that she continued to take until she sadly passed away.

We struggled on as a family. The kids really suffered, and we felt terrible. They weren’t able to do what the other kids were doing, we couldn’t go places they wanted to go. We had no car, a toddler in a pram, 3 children, Lyanda now in a wheelchair and me. Overnight i had to become everything to everyone.

The only thing we agreed on was this. As her needs grew and i was helping her more, we both spoke of how we didn’t want our relationship to become a carer type relationship. Above all else she wanted me to be her husband and i wanted her to be my wife. This, however did not end up being the case. My role as a carer slowly grew to a point it overtook my role as a husband. This began to affect our relationship. I would have done anything for my wife, and i did do – anything and everything. But she needed me, not what i was doing, just me. I felt like i was failing everyone, everywhere.

Lyanda continued to get worse in the early months of 2017. In March 2017, she reluctantly applied for Personal Independence Payment. She hadn’t claimed prior to this as she always said there are people worse off than us that deserve it more and she didn’t want to take away from those that need it more. Her claim was granted in July 2017. This enabled us to get a mobility car. We chose a car, we all voted on the colour and the car was ordered. We picked the car up at the end of October, it was a breath of fresh air. We could go places. We took the kids out, we went out, it was great. No longer did we have to struggle on the bus to attend her appointments, she could go in comfort and stress free.

Christmas came and went, as did New Years. Then the problems became more intense. She was admitted to hospital in January for a week, no diagnosis given for her illness. Then admitted again in March for an overnight stay, she was told she now had asthma and was discharged the next day with an asthma pump. As she was getting worse, i had no choice but to leave my job to become a full time carer. Nearly 3 years of approx 3 hours sleep per night, looking after and caring for Lyanda, raising 4 children and working until 4:00/5:00am then getting up at 7:00 to get the kids to school on time had taken it’s toll on me. Something had to give, before i did.

We all celebrated Mothers Day, Lyanda’s birthday in April and Easter together, while she lay in bed, pretty much unable to move. She joined in the best that she could but tiredness, illness and chronic pain always won the battle. She would eventually fall asleep from exhaustion. This unfortunately was a daily way of life for us since January.

At the end of March however, she decided to put up with the pain and was willing to suffer for one reason. To make the kids happy, to take them on holiday. We went away to Butlins for a midweek break. We had booked it in August 2017 but didn’t tell the kids. We wanted it to be a surprise. As things progressed the way they did, we weren’t sure if we would be able to go. But she sacrificed her health for a week to have a family holiday. It was nice to get away, to see the smiles on their faces and the enjoyment they had doing everything they could. Lyanda’s needs were still there, i was still the same person. Lyanda missed out on most of it unfortunately. She was with us at all times, but the extreme pain combined with her medication meant she was always exhausted. She slept nearly the whole week in her wheelchair. But we were on holiday. Our first holiday in 7 years. And it was to be our last as a family with Lyanda.

She spent about a month recovering from the holiday. In May 2018 we celebrated our youngest’s 3rd birthday, Lyanda in her bed, asleep. I couldn’t wake her up. She would wake, talk but fall asleep again. This happened over and over again. There is no way she would miss our son’s birthday, she had never missed anyone’s birthday before. But she did. We had to celebrate his birthday without her and that was tough to do. Mid afternoon, i had to ring the ambulance. She was rushed into hospital immediately. I managed to speak to a nurse that evening, she was stable but unresponsive. She was admitted for a week in quarantine while they waited for the results to come back. It turned out she had an extremely severe case of pneumonia. Which is, i believe, the cause of the illness that caused her hospital admission in January. The pneumonia was so severe, we were told it would take 5-6 months to recover from it properly. According to the scan results, her right lung was completely scarred and only half the lung worked. She was discharged at the end of May.

The first couple of weeks in June were extremely tough while the initial recovery took place. Lyanda couldn’t eat anything and barely drank. She still slept constantly, and the chronic pain didn’t seem to be easing at all. Then, the third week, things changed. There was an improvement. She was no longer pale and withdrawn, she had some colour back in her skin and a sparkle in her eyes. Lyanda was drinking water and juice as she was always thirsty. She began to get her appetite back and was able to hold down food again. Things were looking good, there were smiles all around. The kids were enjoying time with her and she was again able to enjoy their company. I started to try and have some time with her too, just to chat and reconnect. It had been a few months since we were able to do this properly.

On the Saturday, Sunday and Monday, Lyanda was the best i had seen in months. Still in her bed, she was laughing and joking with us all. She spent time with them individually playing games, colouring pictures, painting nails, whatever they wanted to do. We sat and discussed our future together. We planned what we could do when the little one started school full time after Easter next year. We were going to go places, do things together as a couple and find things that she would be able to do. We also discussed that i could go mountain biking again, provided she was taken care of while i was gone. Our life ahead together was looking brilliant and extremely positive. I finally had my Wife back and she had her husband back.

Then, on the Tuesday she wasn’t feeling too good. All she wanted to do was sleep. Nothing unusual, we were unfortunately used to it. And we knew the next 5-6 months could be rocky while she was recovering from pneumonia. She went to sleep around lunchtime. She woke up around 5:00pm wanting a drink. We chatted for about 20 mins and she drifted back off to sleep. That evening, i started the kids bedtime routine as i had done for the past couple of years. After the kids had gone to sleep and i had done the dishwasher, sorted the washing etc it was nearing midnight. Our 3 year old woke up shortly after at 12:30am, that Wednesday morning. I looked in on Lyanda before going upstairs, and she was sleeping normally, softly snoring away. I went upstairs to him but he wouldn’t settle so i came back down with him. I sat on the sofa with him hoping he would go back to sleep. He did, eventually. So did i, on the sofa.

I woke up late at 7:30am, went upstairs and got the kids out of bed. We all came downstairs, woke our youngest up and then got them all some breakfast. As they were eating breakfast, i got their clothes ready as normal. I needed a hairbrush to brush our daughters hair. I went in to the front room/our bedroom to get one. I walked past Lyanda and smiled at her, then did a double take and walked very slowly towards her.

I found Lyanda at 8:00am that Wednesday morning, having slept peacefully for the last time. I just froze. After a minute of silence and complete shock, my initial thoughts were I have to get the kids to school, they don’t need to be here to see everything that is going to happen. They don’t need to witness the paramedics, police or the coroner attending to Lyanda or listen to anything i needed to tell them. Somehow I managed to keep them out of the room, get them dressed and to school. I then came home and settled the little one in front of the tv with a drink and some snacks before I came into the kitchen and completely broke down.

I rang the ambulance. I sat on the kitchen floor crying. When the ambulance turned up, i stopped crying. I went and sat on the stairs outside the room. I thought to myself, she will be fine now, the ambulance is here. The paramedic walked in to the room and i thought, she’s in good hands now, everything will be fine. Then he came back out of the room and shut the door behind him. All i heard him say to me was, i am so sorry, before i howled. I honestly can’t remember anything past that, i was numb. Completely numb. The paramedic offered to ring anyone for me. Through the tears i scrolled through my phone. He rang 2 friends to have the little one, my Dad and Lyanda’s Dad. He explained what had happened to all of them. I physically couldn’t speak.

Then, that afternoon came the awful task. The hardest thing I would ever have to do. I would have to tell the kids. Somehow I managed this. Lots of tears, howling, hugs and not understanding. I explained to our 9 and 5 year old that mummy is now a star in the sky. That evening they all waited until it was dark so they could see mummy. They wanted to see her and to say goodnight to her.

We all stayed outside until 1:30 in the morning. Then came what i can only describe as the perfect ending to worst and most difficult day I had ever encountered. Our 5 year old daughter then looked up and saw an extremely bright star. Then she simply said “look daddy, there’s mummy. The brightest star in the sky”

Since then, every night we all go outside to see mummy. It seems to be our way of coping together. But each day is long. Each day is lonely. I have the kids, which is a help. But it’s not the same.