It is hard to believe that this time 12 months ago, we were preparing for Archie to take his last breath. A moment deep down, we knew was inevitable, but in our hearts wished it would never happen.

Archie had a rough start to his short little life, a life we shared with our family and friends right from the beginning. The good moments and the bad, the ups and the downs. It was a story we hoped would have had a happy ending.

There are no words that can truly describe that moment, or your feelings when your baby takes their last breath.

Knowing that moment was coming didn’t make the feelings any easier, like I thought it might have… it didn’t help with understanding why this was happening to our brave superhero. It was like someone just ripped out my heart and I couldn’t breathe, I’m not sure I wanted to breathe, at that moment. Everything we had hoped for our son was taken away… what his future might have been like, how he would have grown up with his twin brother, Henry. What mischief they would have gotten up to together. All of these things we would never ever find out.

We felt so lost and so alone. We held Archie for quite sometime after he passed away and I didn’t want that moment to end. I never wanted to let him go. Then, we would look over at Henry, who still needed to be fed, looked after, who was hitting his milestones and demanded our full attention, as any baby would.

I have never experienced grief quite like this. It was the most intense feelings all at once and not knowing how to deal with them. We had to think about Archie’s cot, car seat, bassinet and all of the twin clothes we had hanging up in the wardrobe that the boys would never wear together.

There’s a time that I remember when I never felt so lost

When I felt all of the hatred was too powerful to stop

Now my heart feel like an ember and it’s lighting up the dark

I’ll carry these torches for ya that you know I’ll never drop

***Maroon 5, Memories***

We had a huge amount of support and generosity from our family and friends, which we will forever be grateful for. People we hadn’t heard from or spoken to in over 10 years were there for us. People we had never met before would reach out to us and send their well wishes.

You don’t ever think these sorts of things would ever happen to you or someone you know. So when it does, a lot of people don’t know how to act, or what to say. It’s not their fault, it’s just not something most people are equipped to deal with.

People would say to us, “At least you have Henry, he is doing so well”. I know they meant well and quite often people do not know what to say in these situations, but anything that starts with “At least” is not something a grieving parent wants to hear.

The firsts without Archie…

Our first trip away after Archie had died was hard… wishing we were sharing this moment with him and wishing Henry had his brother to play with. I felt guilty that we were having a ‘holiday’ after we had just lost our son. But the truth was, we needed to get away, just the three of us to spend some time together.

Then, of course, came Henry’s first birthday. This was a day for joy and celebration, but also came sadness and grief at the same time.

First Christmas without Archie

I am probably the most festive person I know and Christmas is my favourite time of the year. But 2019 was a year I wished we didn’t have to do the whole Christmas thing. It was the first without Archie, and I just didn’t want to deal with it. We kept it low key, didn’t even put a tree up. Henry was, unfortunately, sick the week of Christmas, but he was happy being cuddled, which is actually exactly what we needed.

Archie’s respiratory Doctor, Dr Suresh, called me on Christmas Eve just to check in on how we were feeling in the lead up to Christmas, one without Archie, the first without Archie. Dr Suresh is one of the kindest, most gentle people we have ever come across. He said that there are patients that come and go but some stay with him forever.. and that is Archie. It was a call out of the blue, but one I will cherish.

We lit a candle in honour of Archie and each had a drink of Archie Rose whisky and had a cheers to our boy who was celebrating his first heavenly Christmas.

One year on…

You know the saying, time heals all wounds? Well, it doesn’t. The thing I have learnt throughout this journey is that time doesn’t heal all wounds, you just learn to live with the pain.

There is this ongoing battle to balance the pain and guilt of outliving your child, something no parent should ever have to do. But at the same time, we try to live in a way that honours Archie, and his short 5.5 months earth-side.

My Nanna was blessed with twin boys as well. And like me, Nanna lost one of her boys, although quite a bit older. I have no doubt that the pain she felt is just like that of what we are feeling.

I have found it is a constant balance of managing grief in one hand and having a happy life in the other. One minute everything might appear to be happy, cheerful and we are having a great time, and the next the guilt kicks in and we miss Archie and wish he was here.

Walking down the street and I see a double pram, I find myself fighting back the tears thinking that should have been me. Walking down the path at the Botanical Gardens where we walked with Archie, I have to fight back tears. Looking at photos or videos, again, I have to fight back tears.

I have found it so important to surround myself with people who truly understand the journey we have been on. There is a wonderful group of mums I met in the NICU who also had a really hard start to their parenthood journey. These women, their husbands and their children are strong beyond belief. These parents and are always there for each other, no matter what. And then there are the nurses who would do anything for you. These people truly understand the journey that is NICU.

The week leading up to Archie’s anniversary

The week leading up to Archie’s anniversary was one filled with joyous memories and incredible grief. We experienced all of those feelings that we felt just one year ago.

We found ourselves saying, this time last year, Dr Suresh called us in to talk about Palliative Care and signing all of the relevant paperwork.

Then it was, this time last year we had professional family photos taken at the hospital with two amazing photographers, Kim Freiberg and Karen Newsham.

When it came to the day where it was a year since Archie’s Great Adventure, this was hard. It was a year since we got to bring Archie home and to the Botanic Gardens. We got beautiful family photos taken at home by Kristy Lee. This was a huge milestone for us and as happy and exciting as it was, it did mean Archie’s time hearthside was coming to an end.

I would have to say that the hardest day for us has been 17 January 2020, a year since we went to Hummingbird House for Archie’s end of life care. Although Archie passed away on 18 January, we arrived on the 17th. We didn’t sleep and we stayed together outside. The 17th was the day our family said their goodbyes, it was the day we removed Archie’s high flow support. So, for us, the 17th holds so many of our memories.

Always say his name

We will never forget Archie – the loss is always going to be right there, sitting under the surface of all of the other emotions – including happiness. I would rather start crying because you mentioned Archie’s name than you never say his name again.

Some days are harder than others. I don’t think that will ever change. We are watching Henry grow up into a cheeky toddler and always wonder what it would have been like with Archie at home and what sort of little boy he would have become.

I read in an article recently, that although one of our twins is not still with us, we were still destined to be twin parents. But it does mean, when you see one child running around, we see two. When you see one child hitting milestones, we see two. It is something that never goes away.

Thank you, Archie

Thank you, Archie, for teaching us to be strong

Thank you, Archie, for teaching us to love unconditionally

Thank you, Archie, for shining light on everyone that met you, and even those who didn’t

Thank you, Archie, for encouraging those around you to always try harder

Thank you, Archie, for teaching us generosity

Thank you, Archie, for being the best little brother to Henry

Thank you, Archie, for never giving up and always loving us.

And finally… Thank you, Archie, for being you.

“When a child dies, part of a parent dies. That is a fact. From that point forward, parents live in a state of “partial life” due to having what is now called “broken heart syndrome.” We are just beginning to learn all of the facts concerning grief, the effects of grief, and the reality of how grief changes the very physical and emotional make-up of parents. Those who say to parents of child loss that they should have closure and move on simply do not understand the facts of what happens to a parent physically and emotionally when a child dies. There are very real changes that take place. The pain of loss is real. Yes, parents will eventually learn how to ” live within the pain of loss”, but there will always and forever be a part of a parent that is missing. Parents of child loss are courageous beyond words! They are living with part of their heart and soul missing, and there is nothing ~ absolutely nothing ~ to compare to this kind of pain. God bless every parent of child loss this day with the continued courage and strength needed to go on” ~ Author Clara Hinton (2016)