Home

It became very easy to be wrapped up in the hospital life on the neonatal unit. The days flew by in a flurry; I didn’t once ever think I was bored, in fact I felt I barely had time for anything.

In my blogs I have talked a lot about Arlo and everything that goes along with a prolonged neonatal stay, but one thing I haven’t talked about much is home. Life back home was going on without me and that was hard, very hard. The summer-green leaves had turned a golden-brown with shades of red, orange and yellow. In the flicker of an eye they began to carpet the ground below. It was the time of year for autumn dog walks, blackberry picking, rustic slow-cooker meals and blackberry and apple pies smothered in custard. It was the time of year for homemade Hop-tu-Naa (Halloween) costumes and traditions. It’s time for carving a turnip for tradition and a pumpkin for creativity. (Much to the disgust of some family members who don’t allow a pumpkin in their house. It’s a turnip or nothing.) It was the time of year to knock on doors and sing the Hop-tu-Naa song and cross your fingers they gave you some sweets.

Hop-tu-Naa

My mother's gone away

And she won't be back until the morning

Jinnie the Witch flew over the house

To fetch the stick to lather the mouse

Hop-tu-Naa

My mother's gone away

And she won't be back until the morning

Hop-tu-Naa, Hop-tu- Naa

I may be a complete hypocrite by carving a pumpkin along with the traditional moot, but I do not do ‘trick or treat’ it’s the Hop-tu-Naa song or no sweets. All the while I continued on the neonatal treadmill as if it was ground-hog day. I know every day is different and Arlo did amazing things each day, defying the odds. But it was still waking up in the same flat, in a densely populated area, no fields, forests, or rural landscapes. I was used to seeing the sea, and countryside. This was all strange to begin with, but it quickly became the norm, because I was there for a very important reason.

I didn’t much think of the changing seasons until I noticed the leaves of the sporadically placed trees placed in an attempt to clean the heavy, grey air of a city, floating around in the chill-to-the bone autumn winds.

Autumn is my favourite time of year and I felt it was passing me by. I still spoke to Alfie in the morning before going to sit with Arlo and at night when I returned to the flat to get my tea, express milk for Arlo, set my alarm to do this again at 3 am and go to bed. I would sometimes read Alfie his bedtime story still, but he didn’t always want me to, in comparison to being at home when he would beg for me to read him a story every night. Daddy just wasn’t the same, although he was better during this period because he was there, sat snuggled next to him and not reading to him through a cold, reflective iPhone screen! A cold reflective iPhone screen that frustratingly kept freezing due to the patchy internet coverage; it just wasn’t the same and it broke my heart that I wasn’t there in real life to put him to bed every night. I was so lucky that Day was doing such an incredible job of looking after Alfie that I didn’t have to worry. Okay, so it may not have been done my way, he may not have read every single night before bed, homework may not have been done as creatively as usual, but he was fed, clean, loved and happy. When dealing with things that are completely out of your control you learn to loosen the reigns a little and realise that things still tick over and there is no need to be a control freak all the time. And when Day wasn’t able to be there for Alfie, either because he was at work or with Arlo and I, we are incredibly fortunate to have not one, but two sets of grandparents that step in to look after him (Alfie, not Day!). You see I think I had subliminally prepared them for my going away by embarking on a school trip to France for 4 nights earlier that year. Day had documented ‘Daddy and Alfie’s week alone’ on social media, including one post of Alfie, still in his school uniform, washing the dishes in the bath! Multitasking at its finest! I received this post while in France on the sketchy Wi-Fi as we grabbed a few precious moments once all 30 children were settled in bed. It did make me laugh out loud! I did think back to that time when I knew ‘Daddy and Alfie’s undefined amount of time alone’ was happening, but this time under different circumstances, but I knew they were okay and probably having more fun running riot!

It brought it all home just how much I was missing out on when my mum and dad sent me pictures of them with Alfie at the school’s Harvest activity day. Don’t get me wrong, I’m so glad Alfie had someone turn up for him and that he wasn’t sat alone without anyone visiting him this special event, even the thought of any child, especially Alfie, sat alone while all other children have a visitor truly pulls at my heart-strings, but I was upset and slightly jealous. It should have been me. In life there is so much you take for granted, that you will be there next week to see your child in their concert, that you will have smooth pregnancy, give birth full-term and take home a healthy baby. Maybe by experiencing an unexpected illness or injury and you miss something important because of it you may have some idea. You may promise your child or family or friends you will be there next time, but with a prolonged illness or unexpected turn of events you cannot make those promises. You see this wasn’t our plan, we had taken for granted when we announced Arlo’s expected eviction date of the 21st of December 2016, that we would be taking a full-term healthy baby home. I expected to be waddling Alfie to school, football, parties, school events chatting excitedly as I counted down the weeks, not sat in an unfamiliar neonatal unit a plane/boat journey away from my partner and our eldest son, while caring for our premature, extremely poorly son, youngest son. There is so much you take for granted, you never think anything like that will happen to you, because that’s the type of thing that happens to other people. I’m sure a friend of mine thought that recently when she was diagnosed with cancer aged 29. You never know what is round the corner. She had so many plans for her future that are now uncertain, and many that will defer from the original plan. It’s a difficult one because if we didn’t plan for the future, we would just curl up and stop. We need those future plans to be made, we need to dream and look to the future, but savour those moments while you have them. I don’t want to tell her she is being brave, because I feel words are insignificant and meaningless and although our situations were very different there are many similarities and one of them was the uncertainty of the future.

Alfie would constantly ask when I would be home and the only answer I could give was, ‘When Arlo is better,” because I had absolutely no timescale to be able to offer him any reassurance.

When Day and Alfie came over to visit we made sure that we all spent some time with Arlo as a family,  but then we would make sure we went into Liverpool City Centre to do something for Alfie to do like go to the cinema or crazy golf. After all the neonatal unit of a hospital is no place for a 5 year old, for them it is incredibly boring, Alfie would be so excited to see Arlo, but after 10 minutes of sitting still and watching the baby lie in the goldfish bowl beeping at him he was done. In some ways it was comforting that he was no-longer awestruck and terrified by the sheer amount of machines surrounding his little brother.

And I can’t blame him, just like me, this child was an outdoor creature. Not used to the confines of a built-up urban area, never mind the confines of a small clinically disinfected room inside of a hospital. He needed to get out, stretch his legs and run riot as all 5 year olds should. I realised how lucky we were on the Isle of Man to have so much opportunity to explore the outdoors, something we had previously taken for granted. Just as Alfie missed the outdoors, I missed home. And for now this was life and we had to make the best of a bad situation. We weren’t brave or courageous, we were torn; we were like a glass vase always teetering on the edge, with the constant threat something may break us.