The Greatest

The fresh Manx wind that rocked the boat all the way back, hit my face and filled my lungs. I was home. A broken, defeated soldier returning from war. The familiar sights and smells of the Isle of Man wrapped around my shoulders; Manannan’s cloak surrounding me, comforting me, protecting me. Those same bumps and hollows in the roads paved my way home as though feeling my way in the dark. The orange halos from the streetlights lead me right to my blue front door. I fell into my own bed for the first time in over 9 weeks, Day and I took refuge under the covers and sunk deeper and deeper, crying till there was nothing left. We’d left Arlo alone. I knew he’d be safe, but I just wanted him with me. Nothing soothed that heart-wrenching ache, no tears emptied the reservoir, even the memories of holding our sweet boy didn’t fill my vacant arms.

The next day we went to collect Alfie from my parent’s house. As we walked up the path a felt like an army official coming to tell the family that their loved one would not be returning from battle. Only I was not like the stoic officials, my shredded heart ruled and I couldn’t hold back the flood. I was so relieved to be back to see Alfie, to be his mum again. I needed him, I needed to be his mum. But unfortunately that involved telling him that his brother wouldn’t be coming home. We wanted to be the ones to tell Alfie in person, as heartbreaking as it was we didn’t want either set of grandparents to tell him. It should come from us. We also had our reasons for waiting a couple of days, it had been Alfie’s birthday and we wanted him to have his day. There was no hurry to tell him, especially when we could keep him free of the crippling pain for as long as possible.

Alfie simply just crumbled into our arms, and we cried along with him. There were no more words to be spoken, unfortunately we didn’t have anything else for him, we had no answers for him, thankfully at that point he didn’t ask many questions. For now he just accepted that Arlo was too sick. We told him that Arlo was with Great-Granda Arthur (his middle name sake and my Granda) who was famous locally in his youth for being an incredible footballer, so he would teach him to play football. And and after lots of fun on the football pitch Great-Nanny Pam (Day’s Nan) would make him one of her famous Sunday roasts. Arlo would be very well looked after. We chose not to use words like heaven, we spoke about him being in the sky, and let Alfie take the lead. Alfie chose to say Arlo was in heaven, so we went along with that. As we aren’t strongly religious, we felt it was important for Alfie to make his own decision and we could build around his beliefs.

Friends and family called round, and rallied round. They asked if there was anything they could do. At that moment all I asked for was for them to make us some food. I couldn’t cope with the decision making of what to cook, the complexity of putting a meal together too much for my jumbled brain. So just having something I could stick in the oven was just what we needed. Food for fuel.

It’s the small things that make you smile even at the darkest of times, I remember us sitting down to enjoy a lasagne one night, made by Claire. Day couldn’t believe how much it tasted like mine. I immediately text Claire with a smile on my face, asking her her if she had help from ‘Mama and Papa Dolmio’ when making her lasagne! She told me she did. I knew she did.

My auntie put some money in an envelope and put it through our letterbox, the note read, ‘Here’s some money for a takeaway, I don’t want to poison you with my cooking!’ Those are the little things that tickle a small smile at the corners of your mouth. Some friends left food outside and text us to tell us it was there, some came to visit us, some sent messages, but we knew we were being thought of.

The amount of cards we were sent was unbelievable. We were so touched to know so many people were thinking about us, to know that in turn, Arlo had captured so many people’s hearts in his short life. After a few days and with heavy hearts Day announced Arlo’s death on social media. It brought me back to that moment 7 weeks earlier when I had fought with myself about announcing Arlo’s birth. I didn’t want to announce in case Arlo died, but if I didn’t announce it was like he never lived. And he had lived, he had existed, he would always be our son, no matter how short his little life. After all we made that decision to put the photo of Alfie in his superhero costume on Facebook, proudly displaying Arlo’s scan picture. All our friends knew we were expecting, and Alfie, our superhero, did have his sidekick. His sidekick had been born 13 weeks premature, but he’d been born. He was a tiny little person, his birth needed to be known. And now so did his death. To be honest I was grateful to have Arlo’s death ‘out there,’ I didn’t want to have that conversation over and over again. I was grateful that we had announced his arrival and documented his life. We were as proud as we could be of both our children and always would be.

The flowers, oh the flowers! We were sent bouquet after bouquet, it was a lovely gesture, but after quickly running out of vases and windowsills, I ended up giving a few bunches to friends and family that visited. I simply didn’t have any space left and I didn’t want them to go to waste. I wanted them to spread their beauty and love elsewhere, where they could be seen. The amount of cards, flowers and messages were truly overwhelming. Arlo had touched so many lives.

We kept Alfie off school for a couple of days, just to spend time some time with him. I felt I’d missed out on so much while I was away with Arlo, that Alfie just needed some time to process things with both his parents around him. I can’t even tell you what we did, we just existed. We were just being a family, trying to adjust to our new normal. However, I felt I was marking time till Arlo was home. My mind flitting between what I was doing with Alfie, to where Arlo would be at that moment. I knew his transfer to Alder Hey would be on Monday morning and once there he would have his post-mortem. I just felt I was in a treadmill, simply surviving and getting through each day while waiting for Arlo. Waiting to see my baby boy one last time.

Alfie went back to school, he needed some normality, and Day decided we would not sit around the house the whole time. We went out for walks with Sam, who was ecstatic to have us back, although he was subdued (for a springer-spaniel, subdued is just like being an average dog!). He knew something was wrong. One bright, yet windy day, we went for a walk up Snaefell, also known as ‘The Mountain’ as we have lots of hills on the Isle of Man, but only one of them is tall enough to constitute being a mountain. We climbed to the very top! We made it, but for me it was a physical struggle, an uphill battle. I felt like every step I took was plunging into dry sand that swallowed me; I sunk further down and barely had the strength to pull myself up. A perfect metaphor for how I felt inside my heart. For sixteen weeks I had been on bedrest or glued to Arlo’s fish-tank bed. I’d done nothing like my normal level of activity, and on top of that I’d had an emergency c section. I felt nowhere near fit enough to do it, but even though I wasn’t ready, I needed to do it. Arlo wasn’t ready, but he’d been thrust into this life and faced a battle to live which he’d fought with all his might. I’d seen what Arlo had gone through, and this simply didn’t hurt. The physical pain was nothing compared to the crippling emptiness inside my heart.

Earlier than expected, I got the phone call I had been pacing for. Arlo was on his way home, just 6 short days after us. Marie from the Honeysuckle Team phoned me to tell me. They had spoken with the undertakers who would be there to meet Arlo from the plane. For the first time, Arlo would be home on our island, yet as he came off the plane he would never feel that fresh Manx wind on his cheeks, or have it fill his lungs. He would never run in the plantations, ride his bike or kick a football. He’d never dip his toes in the foaming, freezing sea that encompasses the Isle of Man, he’d never see a TT bike race around the famous mountain course, let along climb our one and only mountain, but our little wandering scouser would soon return to his Manx roots. I couldn’t wait to have my boy home. The day of his arrival I clock-watched and checked the flight updates so I knew when he’d landed.

With his return came some important decisions. We wanted to give Arlo the best send off possible, it felt like the last thing we would do for him as parents, so we wanted to make it special, every bit as special as Arlo himself. The funeral director, and family friend, came round to the house. I remember Day telling me he was coming and I started to panic. I wasn’t ready for this. The last week had ticked by so slowly and now we were being thrust into this decision making. I hadn’t thought. I simply hadn’t thought about the types of decisions we had been asked to make, I was too aware of what Arlo would be doing, when he would be home and being a mum to Alfie that I was completely and utterly unprepared for making funeral arrangements. I didn’t know where to begin.

Thankfully the funeral director was able to guide us and help us with the decisions that needed to be made and as we ticked the jobs off we got it done and I actually felt quite strongly about the decisions we were making as we went along. Day and I knew what we wanted to do for our boy.

We had decided early on that he would be cremated. I had watched the raw pain of a loving mother burying her courageous, fun-filled child who always had a cheeky dimpled smile on his face. He had battled cancer so bravely. Her pain haunted me and I just knew I couldn’t do it. I didn’t know or think our way would be any easier, but I tried to convince myself it would be. We wanted to bring Arlo home, so it was to be cremation. I also knew that I couldn’t let those curtains close at the crematorium. The first time I experienced it I was 15 and it was my Great-Uncle’s funeral and the first one I’d been to. It just seemed so... so final and it had traumatised me. Day and I would go up and then the curtains would close behind us, everyone would exit and we would leave in our own time. I felt a little better knowing we could do this. Day came up with the idea of asking one of my nieces, Jorja, to sing, but we didn’t know if this was possible. (All 3 of my nieces are incredible singers, but Bethanie was at university and we felt Millie, my youngest niece was too young to come- she was just 12.) Thankfully all 3 would be no problem. Those were 3 of my big things. Everything else would just fall into place.

Everyone was so accommodating, it was lovely and made everything so much easier. The photographer from Remember My Baby had sent us the photo of Day and I making the shape of a heart around Arlo’s white booted feet. We decided we could have that photo and one of Arlo on it. We just wanted it to look beautiful and baby friendly for Arlo, but we didn’t really have any more specifics. The person who made them for us saw that we were having Jorja sing, ‘The Circle of Life’ from the Lion King so he decided to make this a theme and sent it to me for approval. It was truly beautiful and I was so touched. From this we decided that his flowers would be along this theme too, we chose red, orange and yellow roses. We didn’t want to overwhelm his tiny coffin, so we decided there would be close family flowers only, in the form of a rose each. These would be laid on the coffin after the service. Everything was falling into place, just as we had hoped.

Only one thing didn’t, the funeral director had spoken to Day’s mum and told her that Arlo wasn’t in the best condition after his post mortem. We were told we could see him if we wanted, but it may be better if we remembered him as he was. I felt a little conflicted by this, I had been pinning my hopes on seeing him again, but I had also struggled with not seeing him full of life, and his condition already deteriorating. Day and I both decided that we wouldn’t see him again. When we left him on Honeysuckle Lane he looked so peaceful, the air of calm washed over him and we decided he was telling us he had had enough. He wanted to be at peace now, so we chose to respect his wishes and cherish the memories we already had.

We chose for Alfie not to come to the funeral service, we felt he was too young to fully understand what was going on. Instead we told him we were having a ‘party’ for Arlo after and that he could bring his friends.

To be honest, we simply didn’t know what to do for the best. When you’re young and thinking about all the things you’ll do with your children when you grow up and all the decisions you will have to make, deciding whether your child will attend their sibling’s funeral certainly isn’t one of them. We just didn’t think it was fair on him to sit (quietly) in a room of weeping adults, we just felt it was too much. We wanted him to say his goodbyes to Arlo in a child-friendly way, so we chose for him and his friends to let some balloons off and have some fun with his friends. (I now know the error of my ways in regards to balloon releases.)

Arlo’s funeral loomed. They days before it hung over me like a shadow; lurking, waiting. Every time I thought about it, my breath was snatched from me. I couldn’t breathe thinking about it. I didn’t want to say goodbye. I didn’t see how I possibly could say goodbye to my baby. The only time you should say that to them should be if you kiss their chubby cheeks and wave goodbye for a couple of hours. Not forever. It should never be forever. I had to write a poem about Arlo because I had it written in the order of service. R.J. was coming over from the UK and would be reading it out for us. I desperately struggled to find the words. There was so much I wanted to stay, I could have rambled incoherently for pages, but I wanted the message to be clear, concise; to the point. I’m not a lovey person, I never have been, although I feel things deeply, I don’t gush about things. We loved Arlo so much and it was clear to see, but even in this moment I didn’t want the only message to be how much we loved and missed him, that was clear to see. I wanted to shout about how incredible he was, about how far he had come and how he would always be in our hearts. I read it out loud to Day and broke down, he went to take it from me to save me the pain of voicing my feelings, but I refused, I needed to say those word out loud, I needed to voice my feelings.

We needed to decide on the music too. I’d mentioned this to Day a few times because I get it was something we should do together, but I felt he was putting it off. It was starting to stress me out, eventually I realised it was just he needed time by himself to do it. I wrote down the songs I’d been listening to and asked him to choose one too. He did this one afternoon while I walked the dog. I think he needed time in private to do it, maybe because he needed a good cry. That’s exactly what I had done when listening to those songs. I learned that pushing him would get nowhere, instead I chose to give him time and let him have some time by himself to do this. Music can be incredibly emotive, and he is brilliant at choosing tracks to suit a situation or video. At the moment he was spending most of his time supporting me, that maybe he needed to fall apart.

Waking up on the morning is his funeral I felt sick to my stomach. I desperately regretted the decision that we had opened up his funeral to all our friends and family. I’m never one to open up or to show emotion freely in front of people, and today I knew I would have no choice, because we had invited them to the most painful moment of our entire lives. I just wasn’t sure I could do it, at all. With them there or without them there, I didn’t know if it would make a difference. I just didn’t want to say goodbye. Alfie went to school and we told him our friends would pick him up when collecting their children to bring them to Arlo’s ‘party.’ I went to have my hair done, I just wanted it straightened, and Day’s cousin, Lauren has offered to do it for me. I needed something to pass the time, but didn’t have the strength, patience or energy to fight with the frizz that is my hair. So instead, the lovely Lauren did it for me, I wanted to look nice for Arlo. One of my beautiful friends, Sophie, had already done my nails for me, and when I tried to pay she wouldn’t take a penny. Everyone’s extraordinary kindness warmed my heart.

All too soon our parents arrived at our house ready to be collected by the funeral cars. It was decided that Arlo wouldn’t be brought to the house, it was less than a mile from our house to the crematorium. He would travel there with another driver and Day’s grandma to keep him company as she lived opposite the funeral home. I felt comforted that Arlo was with her on the way to meet us. Unorthodox, but it worked for us.

The stretched black vehicle collected us from the house, the air was relaxed as vague chatter between the parents filled the silence. I was glad of this. As we approached the start/finish line of the world famous TT course, the chatter ceased. Everyone in the car became completely overwhelmed with the enormity of what was to come. You always know when there’s a ‘big’ funeral at the crematorium, usually that of a young person or someone well known because of all the cars parked along the road. But I don’t think I’d ever seen so many cars! Day was the first to recognise they were for us when he saw some he recognised and it knocked him for six. Towering gravestones lined our route to the crematorium. The silence in the car was deafening as we all tried to take it in.

The car crawled to a halt. The boot of the hearse in front of us opened and so did the floodgates. I will never forget my eyes finding him, finding his tiny white coffin. It was like I’d been hit by a train, any energy I had had been zapped from my body. I clung to Day. I don’t think I’ve ever cried so hard in my entire life. Sobs wracked my body as the shook Day’s; synchronised. Before I knew it I was walking. I was being lead forward into the church. I wanted to drop to the floor and howl. I couldn’t do this. I was not strong enough for this. I was not ready. I hung from Day’s arm with my head down and let myself be lead. I couldn’t look up and face everyone, I couldn’t look up and face reality. People touched my arm as I walked down the aisle, showing their unwavering support. I knew the song that was playing, Daughtry- Gone Too Soon, I knew it was playing because we chose it, but I couldn’t pick out the words, I felt I was in a tunnel, there was too much going on so I had to block some of it out. The words of the song I’d listened to so frequently were so fitting, we would never know who Arlo would grow up to be, he had gone too soon. The tears continued to roll down my cheeks as I glanced up at his tiny coffin on the arms of our family friend, another wave of emotion blindsided me and I didn’t think I could stand, luckily I’d reached my seat so I didn’t have to hold myself upright any longer. I say that Day was my rock with no exaggeration, without him I physically couldn’t have walked in. He truly held me up; carrying me when I couldn’t bear my own weight. The Vicar spoke and we sung ‘All Things Bright and Beautiful’ we chose this song because we’d asked everyone to wear bright clothes, nothing black. Arlo has only known colour.

R.J. read out my poem, and Jorja sang. It was perfect. I couldn’t believe their courage, standing up there. You could have heard a pin drop when Jorja sang. She did us, and Arlo, so proud. She channelled all of the emotion she was feeling and poured it into her song.

The service finished and we walked forward to go say our final goodbyes. Ben Howard- Keep Your Head Up, played softly in the background. We’d chosen this song because we felt we needed reminding to keep our heads up and our hearts strong, but also because he sings, ‘I’m happy to have you home, with me...’ and we were so glad Arlo was home to rest with us.

The man operating the curtain asked me to give him the nod when we wanted them to shut. It didn’t quite work as planned, as people started to empty out at the same time, all our friends and family came up to comfort us. Just as I would go to give him the nod someone else would come up, we just ended up smiling and he just simply waited till almost everyone emptied out and then we had our private time with Arlo. Day’s parents and brother came too; my mum and dad got swept away in the crowd. We stood for a few moments and gathered ourselves. Day’s dad took a photo of Arlo’s coffin, I hadn’t even thought to bring my phone up with me, so I’m glad he did. His tiny was displayed beautifully with just our few simple roses on it. Everyone else emptied out, leaving Day and I alone again. For the second time I had to say goodbye. This time it was forever. I kissed my hand and placed it on his coffin. We had to go, we had to leave, but walking out that door was the hardest thing I’ve ever done in my life and I will never forget it.

On the way outside I saw the bucket we had put there to collect money for Liverpool Women’s and Honeysuckle Bereavement (we had asked for this instead of flowers) I couldn’t believe how much money was in there already. That made me feel stronger, a little boost. The pounds in there would go to support another family in Arlo’s memory. We opened the door on an usually bright November day and we were greeted by our friends and family, I think I hugged every single person that was there. We were truly supported by every single one of them and the outpouring of love from them made it so much more bearable for us. And in that moment I looked around at the full courtyard at the crematorium and I couldn’t have been more grateful that we opened Arlo’s funeral up. It gave us chance to truly celebrate his little life. I felt like I could breathe again. I felt a small sense of relief that we’d made it through, unscathed- no, but we’d made it with the love and support of all these incredible people around us.

Alfie was brought to us at the wake, or Arlo’s ‘party’ as he called it. It was at a local rugby club. Some of our friends left and picked their children up from school and brought them along. We’d brought lots of toys and footballs down for them to enjoy and a friend went to his house and brought down a bouncy castle. All the children had a brilliant time, which was just what we hoped. And the weather held too which was amazing for a Manx November day.

As the water-washed dirty blue sky made way for dusk, we all gathered outside. It was Alfie’s turn now. We had written the names of Arlo and his friends on some tags and attached them to the helium balloons. Each child took a balloon, and we counted down to zero before letting the helium balloons go. They floated towards the sky drifting between day and night, between life and death, between earth and the sky. I’d been okay. I’d held it together for the afternoon, but the sight of the balloons made me well-up once again.

Day and I stood there with tears in our eyes, Alfie found us for a brief, a quick hug. As we watched the balloons float upwards, everyone else blurred into the background; blobs of colour framing our tableaux. It was just us.

“Mum... can I go over there and play?” Alfie snapped me out of my trance...

And I didn’t want it to be any other way. I was so glad we’d shared such a poignant moment, but I was glad the balance was there. Alfie had said his goodbye in his own special way and then was off to play with his friends.

The greatest day for the greatest boy.

Goodbye Arlo...

Fly, fly little wing, fly beyond imagining.

The Greatest

Some people wait a lifetime to make a mark on this earth,

Others they can do it in the 6 weeks after birth.

We couldn't be more proud of the battle that you fought,

The pride that bursts within our chests is by others sought.

Arlo you've truly made your mark, forever in our hearts,

A mark that grows in strength and size, now that we're apart.

You've changed our lives forever, though your life it was short,

You'll live on in our hearts and the lessons that you've taught.

Strength, determination and a will to prove them wrong,

None of them thought you'd stay with us for so long.

But you had a little message, something to teach us all,

The greatest power in the world can come from something small...

The greatest charm, the greatest love, the greatest boy by far,

Now brightly shining in the sky, you are the greatest star.

Sarah Ward