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Lennon’s story: We just needed a bit of time

We had ten happy years with Lennon. A short lifetime packed with precious memories.

Right from the start we knew Lennon was very unwell. Lennon was born 12 weeks early and spent his first six months on a neonatal intensive care unit, supported by a ventilator and feeding tubes. It was nine months before he would make the journey home with us, and when he did, we began to understand quite how different our lives would be.

Looking after Lennon’s complex needs was a full-time job

Lennon needed medical intervention hourly during the day, and every two hours throughout the night. As a result Ian and I both gave up our careers to care for him. I honestly felt like I was solely responsible for keeping my son alive, and that’s a huge responsibility. I couldn’t just ‘clock off’ because I felt like I wasn’t coping.

Making the most of every moment

Whilst providing 24/7 care was a struggle, it’s important to acknowledge how much joy Lennon got from life. In my opinion, life is for living, and I made it my mission for Lennon to be able to experience as much of life as he possibly could. He loved skiing (yes you read that correct!), bike rides, swimming and anything to do with water, ice skating, horse riding, roller skating, long walks and the seaside.

Lennon had a very close relationship with his sisters Isla and Florence, and he loved to watch them play together. They would climb into his bed in the morning and at bedtime and he would giggle with happiness. I have so many treasured memories! Disneyland Florida is my most treasured. I will never forget Lennon’s beaming smile whilst on the rides. Lennon was a real thrill seeker and up until that point he had only ever sat and watched others on fairground rides. One of the girls most treasured moments with their brother was when they used to make a disco in his bedroom. They would turn the lights off, put on all his sensory lights, blast music and dance around. Lennon would laugh and scream with delight!

We had to work out how to live without Lennon

In 2017, Lennon died, leaving a hole in our family. We had to say goodbye to our darling boy and work out how to live without him. Nothing about life now is the same as it was when Lennon was alive, everything changed the day he died.

At the same time, we’d given up work to care for Lennon and now there was no money coming in. Our benefits were stopped and we found ourselves borrowing money and accumulating debts. Currently there is no state support for bereaved parents – there is not even a word for you when your child dies. When we needed time together to process our loss, instead we were scrabbling around looking for work, paying off debts, borrowing money to try to make ends meet. Our bills mounted, and we were terrified of losing our home now we no longer needed its adaptations. The thought of returning to work was daunting, and all I really wanted was hide myself away.

The Butterfly Fund would have given us time to grieve

If I could have asked for anything to help in the weeks following Lennon’s death, it would have been for some time. We needed time together, so we could support each other without the financial pressure to return to work. The Butterfly Fund would have given us that.

If we had access to such a fund after Lennon had died we wouldn’t have had so much worry on top of our grief – worry to pay the bills, worry about how we were going to pay for a car after our mobility car had been taken away and worry that our other children were missing out on things we could no longer afford.

When a child dies life feels unbearable and having to worry about money at the same time is unthinkable.

If I could have asked for anything to help in the weeks following Lennon’s death, it would have been for some time. We needed time together, so we could support each other without the financial pressure to return to work. The Butterfly Fund would have given us that.

Nikki, Lennon's Mum

Having access to The Butterfly Fund would have taken away some of that distress. I don’t want to see other bereaved families suffering like we did.

No family should have to grieve through the loss of their child alone. The Butterfly Fund is a grant available for families, mourning a child, to spend however they choose. 

Your gift today can give a family like Lennon’s the chance to remember and celebrate the life of the child they loved.  

Will you donate to the Butterfly Fund today?

 

Family stories