Chilli Noodles

Today, for the first time since Leah died, I cooked one of my favourite dishes – chilli noodles. I’ve cooked for others many times since Leah died but NEVER specifically for myself.

The day that Leah went on the ventilator was the day that food ceased to hold any pleasure for me and became merely a means of survival.

At times since then I have struggled to even swallow. Bowls of cereal, or bread and cheese, became my staple diet for many months.

I knew from what the ICU doctors told me, and from my own research, that once Leah became ill enough to require ventilation, that only divine intervention would guarantee her survival.

The consultant looking after Leah that day upset me further by the tactless manner in which he spoke to me. One of the nurses told me at the time that he’s usually very nice, but that he had been very uptight because he was worried that Leah was going to die – was that supposed to make me feel better?

Lung complications post transplant can be very difficult to treat, over a six day period Leah’s lungs had not responded to any of the treatments that had been tried – her condition just kept getting worse and we just kept praying and holding onto hope. I wrote about the day that Leah went on the ventilator here.

I noticed that once I returned to work in September I found eating a little easier – a bit of distraction probably and having another focus. Around October time I eventually stopped losing weight.

Yesterday in Cosmo which is a buffet style “eat all you want” kind of place, I noticed as I sampled the various Chinese and Indian foods, that my taste buds seemed to “wake up”. I started to recall what it felt like to actually enjoy eating.

On the way home from Belfast I pondered the fact that it was now almost 12 months since I had cooked the very spicy, chilli vegetable dishes that I once loved. Thankfully I still have chilli’s in the freezer, leftover from the time before Leah died, when I consumed an average of a chilli per day.

It must be reassuring for my kids to see me doing some of the things that were once “normal” for me. My eldest and my youngest have inherited some of my food preferences so they each tucked into a bowl of spicy noodles today too.

Strange the many and different ways in which trauma and grief can affect us.

Today one of Leah’s friends sent me a link to a beautiful song called ‘I Believe’ by Chris August. I had never heard it before and the words are lovely.

R.I.P. Caiden Tang

In the mid eighties I worked as a nurse in England. Part of that time was spent doing agency work and I worked in several different hospitals.

Everywhere I worked I met Irish nurses, so I could be forgiven for assuming that all English hospitals have a fair complement of Irish nurses.

What a disappointment when Leah and I got to Bristol Children’s Hospital and discovered NO Irish nurses. I asked a nurse on the Transplant Unit where all the Irish nurses were and he told me that he had worked in the hospital for 15 years and had met only one Irish nurse in all that time. I was gutted.

Leah and I were so far from home and family. I longed to hear a familiar accent and meet someone who understood our culture. Then I discovered that there was another child from N. Ireland on the unit – Caiden Tang. His mum Kathy and I instantly became friends – partners in crime more like!

Kathy and I were each in lockdown in isolation cubicles with our very sick children so we relied on snatched moments at the linen cupboard or in the changing rooms to have a quick conversation – and even a giggle. We both knew that a sense of humour was essential in helping us retain our sanity.

Caiden was five years old and was very unwell after his transplant. He was so weak that he had to learn to walk again. When I was entering or leaving the BMT Unit I used to wave into Caiden. His bed was full of teddy bears, his cubicle walls adorned with his absolutely favourite band – One Direction.

Caiden was first diagnosed at the age of five months so Kathy had been on this road way longer than me. Kathy’s tenacity, courage and dogged determination to make sure that her child always got the best possible medical and nursing care inspired me greatly. Her sense of humour through it all was like a tonic.

Occasionally, if Leah’s boyfriend Nic was visiting her and Caiden’s dad Raymond was with him, Kathy and I got an entire evening together – now that was a treat! We spoke the same language – Norn Irish English and we had a similar sense of humour – a little bit crazy!

Children weren’t allowed in to visit on the Transplant Unit but Caiden had been stuck in a tiny isolation room for months and was desperately missing his older sister Ellie. Ellie was also desperate to see Caiden.

Kathy understood the importance of Caiden’s emotional wellbeing and the impact this could have on his recovery. So one quiet Sunday in August, Ellie was surreptitiously smuggled into Caiden’s room and the joy on their faces was very evident in the photographs.

Kathy and Caiden left Bristol the week before us. They had to fly back to Belfast by air ambulance as Caiden was still very unwell.

Back home Kathy and I kept in regular contact but were unable to meet up at that stage due to caring for our children and the fact that we don’t live near each other.

When Leah was critically ill in ICU in Belfast City Hospital Kathy sent me heartfelt text messages of support – the kind that only another “oncology mum” can write.

Kathy also posted a beautifully worded prayer request for Leah on Caiden’s Facebook page. This post received over 1,000 ‘likes’ and it encouraged my heart so much to know that so many people were praying for us and wishing us well.

I was so pleased in May 2014 when Caiden started to look so much better and was even managing to attend school. His progress was amazing.

Then in September came the news that I didn’t want to hear – Caiden had developed pneumonitis. This was the post transplant lung complication that had taken my daughter’s life. I definitely didn’t want Kathy to experience the pain of grief and loss that I live with on a daily basis.

Caiden had been diagnosed with lymphoma at 5 months old. He had come through so much. He was such a wee fighter and constantly amazed the doctors with his ability to recover against the odds – surely this couldn’t be the end?

Just because pneumonitis took Leah’s life didn’t mean it had to take Caiden’s too – every child’s medical situation is different. I prayed for Caiden to be healed, as did so many others. As the scene in ICU in the Royal unfolded, I cried many tears for Kathy and her family.

Along with Kathy I clung to each tiny bit of hope, while at the same time realising with great sadness that her journey bore so many similarities to the 2.5 weeks that I had spent in ICU with my own daughter. I prayed for healing for Caiden, for strength and wisdom for Kathy and the family circle.

Then this morning, on my youngest daughter’s 11th birthday, came the news that shattered my already broken heart.