Parenthood ~ a poem by Katie Dalgoutte

On the 20th December 2013 I shared another of katie Dalgoutte’s very moving poems on my Facebook page. Katie lives in the UK and her handsome son Henry was diagnosed with a grade 3 ependymoma ( brain tumour) at the age of 13 months old in January 2013. Henry is currently doing very well.

Katie speaks for so many of us “oncology mums” with her poetry. I previously published her very powerful poem Imagine on this blog.

Katie’s poem ‘Parenthood’ describes exactly how I was feeling when I posted it on my Facebook wall that day in December 2013. Sadly eight days later, Leah was critically ill in Intensive Care.

Parenthood

Being a parent is such a privilege and joy,

Such years of fun and love to enjoy.

But sometimes with joy comes worry and strike,

A fear that threatens your beautiful child’s life.

We hold on to the reigns, but we lose control,

We are forced to take on so many roles.

Today I’m a counsellor, I’ll comfort my child,

I’ll provide cuddles when they’re going wild,

I am a physio, helping move on,

Support them in learning skills that have just gone.

I am a researcher, searching for answers,

Praying for cures for these horrible cancers

I am a nurse handing out drugs,

When all I once knew was dealing in hugs.

I am a doctor using medical words,

Vocabulary not long ago I’d never heard

I am a dietician praying that he’ll eat,

Avoiding sickness and nausea becomes a treat.

I am a therapist encouraging speech,

Loving and nurturing, trying to teach.

I am a psychologist, doing my best,

When inside myself I’m feeling distressed.

I am an actress pretending to be

A strong happy parent, with no cracks to see.

I am a clown creating laughter,

I’ll strive to make memories today and hereafter.

But most of all I’m still just a mother

Living each day at a time.

All I want in life is for him to be here

My child, my world, my life, my all.

By Katie, Henry’s mummy. 16th October 2013 ©

 

Katie Dalgoutte is an amazing person, as are so many parents of very ill children. Katie has set up a charity called Henry’s Holiday Help. It is a small charity that provides local children (Bury St. Edmunds area) diagnosed with cancer from 2013 onwards, with some money towards a holiday to enjoy during or after treatment.

During this season of goodwill perhaps you would like to make a donation; their gofundme page can be found here. Alternatively, you can contact Katie at henrysholidayhelp@gmail.com or go to the facebook page https://www.facebook.com/HenryTheHandsomesJourney/.

 

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.