I remember reading these stories after we received Finlay's diagnosis, desperately wanting to find out 1) what was likely to happen, 2) how on earth we might cope and 3) that I might find some sign that Finlay would have a peaceful and manageable death and that it would in some sense 'be ok'. Although every case is different, somehow we did cope (and continue to cope) and thankfully Finlay really did have a peaceful, intimate and beautiful death.

Finny (our first child) was born on 6th February 2015. I had done a hypnobirthing course and the birth was progressing nicely. There was meconium in the water so my planned water birth went out the window but Finlay arrived just before 4am. Sadly he was very poorly at birth. He had inhaled a great deal of meconium and we had to be ambulanced to a more specialist hospital. We were told it was unlikely he would make it. It was torturous. Our little legend proved everyone wrong though and after two weeks in intensive care we came home following brain scans which suggested that Finny was fine and may come out of this 'unscathed'. We were absolutely delighted and beyond proud of our little fighter.

Finny's movements were pretty limited but we and the health professionals thought he was just taking time to recover from his traumatic start. Then following some blood tests on May 15th 2015 we were given the diagnosis. It was the worst day of my life. I've never been more shocked or devastated. I felt like someone had shot me. If you are reading this, maybe you are a parent or grandparent who has had this happen too. As you will know, nothing can prepare you for something like this.

My first question was about life expectancy and my second about whether or not Finlay would suffer. Finlay lived until he was nearly 8 months and I can honestly say that I don't think he suffered. He was perhaps a bit uncomfortable (and tired) towards the end but we became so good at meeting his needs and we could use medication when needed to keep him comfortable. I think he just felt loved and safe and like he was exactly where he should be.

In terms of his care, at the time of diagnosis he was pretty well. He was exclusively breast fed and still putting on weight etc. He was a smiley little dream boat :) he loved bath-time, snuggles, music, listening to mummy play piano and daddy play guitar, being outside in the garden, and getting visits from his grandparents and friends. He even met his great-grandma.  He would laugh and chat away and he gave us joy and love like we had never known before. The memories of these times are part of us now forevermore, etched deeply in our hearts, minds and souls.

Finny was still doing well but when he was 5 months he started struggling to put weight on. He was feeding a lot bless him but it was hard work for him. He burnt a lot of calories feeding and breathing and couldn't get the sustenance he needed. Had he taken a bottle we may have managed without tube feeding a while longer but he just wasn't interested unless it was mummy's nipple :). We had the nasogastric tube inserted and started feeding him high energy formula and this really helped. He was putting on more weight. It had the added bonus that we could put medicine down it. He struggled swallowing his meds so this was a real relief. One of my main fears was that Finny would want to breast feed but might choke and I would no longer be able to let him on. Thankfully this didn't happen. Finny breast fed alongside being tube fed up until the day before he died. Sometimes I think he just went on for a little snuggle, and wouldn't get much milk but it was heavenly and such a relief that it still worked well.

Finlay gradually became more poorly. Because we saw him every day we didn't notice at the time, it was just Finny and he was glorious. His breathing became more laboured though and he was just sleeping more and more. We started suctioning any secretions from his cheeks but he didn't seem to mind this really. We became so used to his care. We would give him tummy time (only in our arms) and pat his little back gently to provide some chest physio to help with secretions etc.

When he was 7 months at the start of September he definitely was a bit different. He still smiled and had fun but he was obviously tired. Thankfully it was only really the last week of his life that was a bit tougher and I'm so glad he declined rapidly so that his quality of life remained on the whole extremely high. A week before Finlay died we took him to hospital as he was just not himself. They gave him some oxygen and he picked up for that last week. We came home again where we wanted to be. Some people understandably feel safer in a hospice or hospital but for us it was really important to be at home.

The hospice staff were amazing though and on the last couple of days came to our house to see Finlay and agreed with us that it was time for some morphine to make our boy as calm and comfortable as possible. We honestly weren't sure until this point whether or not Finny was just poorly for some other reason (reflux etc.) but I think deep down we knew it was his condition.

For those last couple of days Finny only felt safe and comfortable in our arms so me and daddy took it in turns to hold him whilst the other one attempted some rest. We had support from our parents too and our community nurses were just amazing. My peer support worker was also such a great support (and continues to be).  

It sounds crazy, but right at the end it was nothing like I anticipated. We were calm and it was so intimate and beautiful. We sang to our baby, told him we loved him and promised him we wouldn't give up and that we would try to make our lives as beautiful as possible in his honour. His breathing started to slow down and eventually he took his last breath.

It's the saddest thing ever to lose the most precious thing in your life. But we tried so hard to focus on Finlay’s experience rather than our own. He had a short but amazing life. He only ever knew love and safety. We felt so looked after by our local hospice for the period after Finny died until the funeral.

When Finny was alive, I honestly didn't think I could survive his death, I didn't think my body would carry on working without him. I felt like my heart might stop beating when his did. I can't believe it but we are coping. I anticipated that it would be awful, all the time. It's really not. The grief comes in waves. Although I wish more than anything that Finlay was still with us, I am so grateful for those 8 months we had with him. I'm so grateful for all that he taught us. We will remember him as the happiest most joyful baby. We feel utterly privileged to be his parents.