She said: “Since then I have been just crippled with sadness. Time passing doesn’t change things but you learn to carry it with you and it becomes woven into who you are. I have to carry on for Molly. It was just utter shock.
“We’re surrounded by photos of Neive and various toys and characters that she enjoyed. I think it's just keeping her in the present with me because she should be here with us. She was only six.
“Time passing is the hardest thing I feel because we feel further and further away every day from her.”
Today, and with the support of her mum and close family and friends, Sarah continues to ‘show up’ every day for Molly, while also working towards her goal of raising better awareness around childhood cancers through Neive’s Arc, a platform to advocate for others and to share experiences and views.
She said: “Neive was all about helping people, she was always compassionate with everyone, people and animals, and I like to think I see the world through her eyes now - to be more Neive. If I didn't have Neive’s Arc, I'm not sure I'd get through every day. It really gives me a focus to do some good in her name and help others. And at the same time, I'm honouring her and still parenting her in a way, and carrying legacy with me.
“Through this we have also been gifted the ability to fundraise and enable vital research projects into Rhabdomyosarcoma to go ahead and hopefully one day find a cure. It’s too late for Neive but I’ll continue to fight for other children, in Neive’s honour.”
While the hard work of learning how to navigate her own grief is ongoing, Sarah says the best advice she has for other parents facing a dark prognosis, is to make the most of every moment.
She said: “Throughout her journey Neive fought valiantly, courageously and never complained nor seemed phased by all she had to endure. Cancer destroyed everything in our lives and we quickly had to adapt to a new way of living. Fear became a familiar emotion.
“Watching your child go through such a monstrous disease is agony and as a parent you become hopeless because you can't do anything to make it better but we cherished every hour with Neive, every moment we had. We just soaked her up and always held on to the positives.
“We chose not to tell Neive the true extent of her disease. She didn't know that she was going to pass away. She just knew that some people got better and some people didn't. I like to think we carried all the fear and worry and she just carried nothing but our love.
“Don't lose hope, always hold on to it because it's the only thing that you have left in that situation that you're in control of. Take, not even one day at a time, but one hour at a time. Don't think too far ahead and just try and focus on the here and now.”
Neive was passionate about music and last weekend A Night For Neive at St Patrick’s Irish Club in Leamington, raised £1,500 for Neive’s Arc, bringing together local bands performing in her honour.
“Neive has sung, danced and laughed her way through treatment but most of all she continued to love life despite its hardships. She carried us all through the darkest of times, she kept us going, she gave us hope and we will honour her courageous quest for the rest of our lives. We’ll never falter in our quest against childhood cancer, in memory of her.”
She concluded: “Grief is all the love that you have in your heart for your children and I'm content to allow it reside forever, because the grief represents my love for Neive. That's my mantra every day. Although it hurts, that's the price you pay for having such a deep-rooted love. And I'll always try and do some good in Neive’s name regardless of how much the pain consumes me.
“We will love you, talk about you, celebrate you and miss you every second for the rest of our lives.”
WHAT CATHERINE SAYS: “Last December, a couple of fellow Soroptimists and I were setting up a Christmas tree in the Parish church for the Leam Tree Fest. As I was busy titivating, they became entranced by a beautiful tree opposite, decorated in memory of Neive for Neive’s Arc. We resolved, as a group of women committed as Soroptimist’s to uplifting the lives of women and girls, that we would fundraise for Sarah and in memory of Neive. Sarah became a Soroptimist shortly afterwards.
“My Gobsmacked! podcast became a platform to spread the word, and while Sarah was somewhat daunted by the process of recording, she was so calm and eloquent as she rose to the challenge. This gentlewoman has, as they say, been to hell in a handcart, but despite everything, she has fundraised and surmounted each new hurdle in honour of her beloved Neive with grace and courage.”
To read more about Neive’s Arc or make a donation visit:
https://www.alicesarc.org/arc/neive-warwick/
You can follow Catherine Williamson’s Gobsmacked podcast at
https://gobsmacked.me/ The book accompanying her podcast is available to purchase
LIVE24-SEVEN.COM 95
ENTERTAINMENT CATHERINE WI L L IAMSON
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