22nd December 2004 was the day my life changed beyond measure. The day that Daisy Rose arrived into the world, blue and angry and determined to show everyone who was boss.
It’s a bittersweet day in so many ways, loaded with meaning and memories and significance. I’d been so ill in the weeks before Daisy’s arrival, mainly in hospital, pumped full of steroids, with regular procedures to try and reduce the significant amount of amniotic fluid which was threatening to trigger a dangerous, premature birth. I’d only been allowed home for very short periods, to wrap the children’s Christmas presents and get ready for what was going to inevitably be a premature baby.
It was clear that things were not right with Daisy, it was decided that her entry to the world would be carefully managed via a c-section. And so I found myself first on the list on 22nd December 2004, as my obstetrician sliced me open and Daisy was lifted into the world and very quickly whisked away to be stabilised and transferred to the neonatal intensive care unit.
And so our story began, and the life I once knew was replaced by a very different life.
She wasn’t just a young person with Costello Syndnrome – which meant complete intestinal failure, requiring 24/7 TPN and IV infusions – she also had a learning disability with autistic traits, uncontrollable multi-focal epilepsy, cardiomyopathy, neuropathic bladder, orthopaedic issues, visual impairment ….the list was endless. But most importantly of all, despite all of the medical issues, she was a young person with her own opinions and wants and needs who also needed to be cared for by a medical team who knew her and understood her.
We were told that Daisy might not see her first birthday. But she did. Every year she defied the odds and we celebrated her arrival in the world, treasuring every moment and marking every year she was with us. Her eleventh birthday was a week after her daddy died but we still made sure she had the best time celebrating.
22nd December 2016, Daisy’s twelfth birthday. She was clearly deteriorating, not just physically but the seizures were also taking their toll on her cognitive abilities and her ability to tolerate crowded places and noise was diminishing. I had bought her tickets to see Frozen on Ice in London. We dressed her in her favourite Princess Anna dress and took the tube to Greenwich but the excitement, noise and crowds were overwhelming. She was so happy and loved hearing her favourite songs and spending her pocket money in the shop but it was clearly all a bit too much for her.
On the train home I remember saying that it was probably the last trip out we would take with Daisy and those words were prophetic as it was to be Daisy’s last birthday. It was almost as though she was hanging on for her birthday and then Christmas, her absolute favourite time of the year. By January it was clear that the window was closing, she was able to do less and less and her health took a rapid and dramatic downward spiral. Although she’d had episodes like this before it was clear that she just didn’t have the reserves left to fight and the toll and grief of losing her daddy the year before clearly played a part.
Daisy died in Great Ormond Street hospital’s intensive care ward on the 31st January, just one month after her twelfth birthday. There is some comfort in knowing that in many ways she chose her time, one last birthday, one last Christmas, and then only a few weeks into 2017 she decided it was time to go.
I take a card to the chapel at Great Ormond Street Hospital as I always do, I feel close to Daisy there, it was a place of quiet contemplation during so many stressful and anxious hospital stays. It always seems to be the place I’m most drawn to on her birthday and her anniversary.
Another year has passed where I haven’t held Daisy, ruffled her fuzzy hair or heard her call out for me. It’s so hard, not a single day goes by when I don’t think of her. I miss her so much, it’s a scar that I will carry with me to my grave. She gave us twelve wonderful, precious years that changed our lives. She was unique and exceptional and her short life had value.
Steph Nimmo is a writer, speaker and campaigner and draws on her personal experience to help make life better for parents caring for a life-limited child. Her third book ‘Anything For My Child’ was published in November. It shares stories from families and clinicians giving insight into the realities of life on both sides of the hospital bed. You can order a copy here Anything for My Child | Jessica Kingsley Publishers – UK (jkp.com)
This Christmas please join us in making a profound difference to the lives of children worldwide who live with life-limiting and life-threatening conditions. The International Children’s Palliative Care Network (ICPCN) is the only global organisation working to improve access to palliative care for the more than 21 million children worldwide who need it. Your generosity, whether through PayPal or GlobalGiving, will go towards helping a global network of healthcare professionals, caegivers, and families be equipped with specialised training to deliver compassionate and high-quality care to millions of children in need. Your donations will also help in our work of advocating for improving palliative care for the world’s children. With your kind support, we can help more families like Steph’s during their most challenging time. Please donate what you can today by visiting our website: icpcn.org/donate or email firstname.lastname@example.org to request a bank transfer. We’d be delighted to hear from you. Thank you!