DAY 26 – 17 November:

Michelle: I drive to the hospital with shaking legs, but take small comfort in the fact that I never got a phone call. That means everything is ticking over. The hour passes too quickly as always. The surgeon has inserted a subclavian line and he seems ok. There is some blood pooling in his chest but they don’t seem to concerned about it. I leave when the 60 minutes have ticked past and wait anxiously to go back for the afternoon visit.

That afternoon I am given bad news. Conor has picked up a super bug. The nurse leaves me with Conor and the dam wall of my emotions break. I cry all over him. I can’t keep it in any longer. I remember saying over and over again: “it’s too much, it’s just too much.” I mean how is such a little body meant to fight off so much?! I tell him over and over again how much I love him, how proud I am of him, how strong he is to have fought so long and so hard. I tell him its ok, he can let go, I will love him forever. But if he chooses to stay and fight I will be right there with him, doing as much as I can to help him.

I don’t want to leave him. I know. I just know this is the end. I just want to hold him. But I have overstayed my welcome by 10 minutes and have to leave. I tear myself away and drive home sobbing uncontrollably.

When I got home, I take a tranquiliser that I have been prescribed but have avoided taking until now, but I am totally melting down. I spend some time with Rachel but I can’t focus on her or anything else except the grinding anxiety in my stomach over Conor. I go outside for some air and Rachel just wants to cuddle. As I held her close and cried, I experienced a tremendously intense feeling that Conor was gone. The phone rang 15 minutes later.

The nurse said I have to get to the hospital now. My heart sank. I knew that what I was trying to pass off as random negative thoughts were actually reality. My parents arrived shortly after the call and because I was so upset my Dad drove me to the hospital while my Mom stayed with Rachel.

I pressed the buzzer and waited to be let into the CTICU. Seconds felt like hours. My heart was hammering in my chest, I could barely breathe. The surgeon who had hooked Conor up to the ECMO walked down the passage towards me while I was waiting to be let in the door. I asked him: “Is my boy dead?” He dodged the question and asked me where my husband was. I knew. A weakness rushed over me but I gathered all I had to remain standing.

He led me inside and as I walked past Conor’s isolation room, room 13, I saw him lying there, but he wasn’t hooked up to any machines or medicine lines. I knew. Sitting in the office, the surgeon explained that Conor had somehow pulled loose from the ECMO. They were about to hook him back up to the machine, but he looked at how much time had passed and decided to rather call it. He made the right choice. Our boy was now free of pain and suffering and didn’t have to fight anymore. My heart and soul shattered.

I walked outside and told my Dad who was waiting in the passage. We cried and hugged and cried some more. I had to call my darling husband, who was miles away, and tell him our baby boy had become an angel. That was the hardest phone call I have ever had to make.

I finally got to hold him, just not the way I imagined it would be. At all. Ever. I wrapped him up with his lovey, kissed him goodbye and had to force myself to put him down and walk away. Empty.

And this is where Conor’s story ends. Just 26 days on this earth.

Writing Conor's story, our story of Conor, has been an interesting experience for me. I haven’t written about it in such detail before now as I felt that I had no words to describe our journey with him. The fact is, I still don’t. Because no matter the adjectives, there are no words that can accurately capture the true depth of emotion we felt. There are no words that can encapsulate the love, joy and wonder we felt about our beautiful new bundle of joy; or that can truly reflect the terror, fear, horror, anxiety, grief and complete devastation I felt during most his short life. In reading what I have written, the words sound hollow. But they are the best ones I have for now.

Michael: Of course, the lights come on just as I close my eyes after the fourth movie. We land and customs and immigration go quickly; I have hardly any luggage. The day’s work passes fast, I am unable to sit still and I rush through the work. It was in these few hours of working, of doing stuff that I am familiar with, that I feel everything will be ok. My approach to doing things in routine is my shelter, my controlled space. Once done I phone Michelle before leaving for the airport, he seems fine. That is good news. Is she protecting me? Or is it the morning visit (6hrs time difference between Malaysia and Home) when the doctors inform us of his status? As there is so little known about myocarditis in neonates, and google offering very limited information to worried parents, we hold onto those informative words from the medical professionals. There is nothing else.

On the hour and a half drive to the airport I feel uneasy. I can’t explain it. I put it down to being awake for 36hrs.

I get to airport and check in. I grab dinner and switch on Wi-fi. First message from Michelle: “Can you call?”

He passed away 30min ago. I slump to the floor in the one of the busiest airport terminals in the world and cry. People just walk around me, diverging, like water flowing around a stone in a river. I am alone, surrounded by close to 5000 people in a 100m radius. Alone.

Michelle outlines what happened. I feel so guilty for not being there with her. What a strong woman, dealing with this. Luckily she has a good support system and someone will be with her until I return.

Twelve hours, the length of this international flight. That is all that is between me and my wife and daughter now. Twelve hours too long

Funnily enough as we lift off I start feeling calmer. Is it because I am closer to him up here at 36000ft? For the first time in my life I sleep more than four hours on a flight.

What will tomorrow bring? There is no word for this. When a child loses its parent, it is an orphan. When a person loses his/her partner, he/she is a widower/widow. There is no word for when a parent loses a child. It is just f****** not supposed to happen! It is not.

Grief is nothing but Love with no place to go.

Thank you for celebrating Conor's short life with us over the past 26 days. Hopefully we can continue to find meaning and some modicum of peace in carrying out the mandate of The Conor James Foundation, his legacy, in his memory, with all our love.

Conor's Mom and Dad xxx