"Arlo’s short life had taught me so many lessons" - Sarah's story

It takes three seconds in the morning. In the first, everything is okay and it’s just another day. The second is when the mind shifts back and forth, unable to settle in its usual way. It stumbles and falters, back and forth; out of rhythm, out of time. Something is off... my eyes spring open, and I begin the rest of my life without my son.

I didn’t think I could put one foot in front of the other. I didn’t think I could breathe in and out without him. Aching arms was more than a phrase, my arms physically hurt for Arlo, I desperately wanted to hold and mother him. Although the neonatal staff were brilliant and supported me in being his mum, every fiber of my body wanted to snatch him away and run as far away as I could so he could be mine, just mine. I felt so helpless knowing that my mother’s instinct wasn’t enough to keep him alive. All I could do was mother him through the glass and it wasn’t enough. I’d desperately wanted to hold him without his wires for a proper cuddle, skin to skin, mother to son.

The devastating irony was that I was able to hold him, without his wires; but only his physical body. The day before the Arlo from inside, the one that had fought so hard, had floated away like a feather in the autumn breeze.

Arlo lived for six weeks and one precious day. He was a fighter even before he was born when he struggled for 8 weeks inside me without any water due to my waters breaking early in pregnancy – PPROM (preterm premature rupture of the membranes). He battled infections, underdeveloped lungs, an inflammatory skin condition and malfunctioning bone-marrow that was attacking itself - Hemophagocytic Lymphohistiocytosis (HLH).

We’d been given ‘The Talk’ more times than I care to remember, but Arlo had proved doctors wrong at every turn. He left doctors scratching their heads and completely baffled, I became complacent with medical opinions which ended with, ‘...but you know, it’s Arlo, so anything could happen.’ Or ‘... but this little guy seems to be ripping up the rule-book.’ Our soldier fought with every mechanical breath, until he could no more. A tired, battered comrade, who had given his all to get home with our loving family, but the battle had proved too much.

Arlo’s short life had taught me so many lessons, and because of that I was determined that his legacy would live on. I had started a blog while Arlo was alive in neonatal, and I continued with this after he had died. It was my way of processing what had happened and it evoked my love of writing. I could relive those moments with him through my words, I was scared that the memories would fade and blur as they do with the passing of time. However, with the black words on the white page, I only needed to reread them to relive his short little life and the impact he had made.

Within two months of his death, I had written ‘Arlo’s Adventure’ for Arlo’s big brother, Alfie. (And it now gets read to Arlo’s little sister, Ava, too.) The story starts with the excitement of a new sibling waiting to be born. The impatience of the little bear cubs who want to meet their new baby. Something goes wrong and their baby doesn’t come home with them, but even if their sibling was no longer with them physically, they would always be a much-loved part of their family.

The book was illustrated by an amazing young artist who was just 11 years old at the time. I am the luckiest person in the world to see my book through the eyes of the most incredibly talented young lady. Proceeds from the book go back into the production of the book and to our Isle of Man based charity; Arlo’s Adventure.

Writing this book and starting this charity means Arlo’s name is spoken. I hear his name so often and it brings me so much joy to hear that beautiful sound be used over and over again meaning he will never be forgotten. I may not have been able to mother him in the traditional way. I’ve had to find a new way, because I always knew inside my heart that I’d have three children, and I do. Three in my heart, but only two I can cuddle.

The last verse of ‘Arlo’s Adventure’ reads, ‘Although in the stars he seemed far away, safe in their hearts forever he’d stay.’ And how true that is.