I finally have a minute to sit down and truly reflect on these days of last year, the early hours of the 18th and our life together sweet baby. I think life has positioned itself well since August 9th to help us (me) be distracted away from thoughts surrounding your final days here. I so desperately wanted to pour over each day in my mind…the last days I was able to hold and touch you. (Interestingly, the images I have of you are not on your sickest days…you’d think they’d be engrained in my head…they are there but it’s your beautiful face and sweet smile I see when I think of you. As it should be.)
I’m sitting in our quiet house (that’s only because it’s the middle of the night…it’s louder than a train station in here normally!) listening to the songs that played over and over again so many times for you in the hospital through the monitor in Cole’s room (the room you were supposed to share with him) the same ones we listened to non-stop in your final days. In so many ways I wish I was back there with you now but I know that is the selfish me talking because I miss the feel of you in my arms. If I had known how badly my arms would ache to hold you to me, I would have stayed so much longer. I would have been asked to give you up, been told that it was time. I guess now I know the time didn’t matter, it was never going to be enough. (It never is with our kids, is it?) In the excruciating pain of your death, we were actually given a gift we had not had in a long time…the ability to hold you, free of tubes. To cuddle you without fear of pulling a line. It felt so good, which increased the heartache even more but you were also at peace.
I remember leaving the PICU and getting to the car, thinking I’d forgotten my phone. I ran back up to check the room…but that was not it. I think it was the piece of me that thought, no…no…please, it can’t be real, he’s supposed to go with me…I’m supposed to protect him and help him through this…me and my little buddy. The final walk through the halls that had become a second home to us was so lonely…my arms were empty, you were gone.
As we left the hospital, heart broken and well, just broken. I will never forget the torrential downpour outside. It was terrible. I mean here we are grief stricken and we kind of looked at each other like, really? Really, you’re going to throw this on us too? So many times I’ve thought of that night and I think the rain was not rain at all but the tears of the children who went before Declan, crying for the loss of yet another young life; coupled with the collective tears shed by the Mommy’s, Daddy’s, brothers, sisters and family members left behind.
Those last days were torturous. You almost slipped away so many times and it was horrific to watch your breathing slow and heart rate drop wondering if this was it, the moment we would lose you. And then you would fight back…there was so much fight in you. I found myself wanting it to be over for you but knowing I wouldn’t be able to bear it…on my God, maybe I shouldn’t be sitting still thinking about you and how much I miss you. Watching you die was crushing. The most helpless feeling in the world, knowing you were leaving us…that the cancer had won and was taking you from us.
I think on some level Cole is sensing it too…he keeps crying out in his sleep and he rarely, if ever, does this for any sustained period of time. He was inconsolable enough that he’s now sleeping next to me, lying on the last blanket we held you in…the one I now sleep with every night. Maybe his little heart is remembering and crying out for his loss, the loss of his twin.
But then his cry is the reminder for me, the reminder of today. Yes, now is it the 18th…coming up on the time you took your last heartbreaking breath. I actually don’t mean reminder of the 18th but our mantra for this whole nightmare…we only have today. Stan and I were talking about last year the other night before I left for my trip. We were talking about the day we found out Declan would die, and Stan said he’d rather spend his time thinking of all the happy times…the day of his birth, the smiles, the joy he brought us. And he’s right. It’s easy to get caught up in missing him and he crushing pain in our hearts every day but in the end, what purpose does it serve? By keeping ourselves in the present with our boys and remembering the joys, not the trials of the past, is how we want to try to live.
The time just crossed over 2:20am, your official time of death. Damn. I am numb at the thought. Sweet Declan, please know we will try hard to keep your spirit alive….fight to save others from the place we find ourselves in. You are missed beyond measure. Thank you for all you’ve given me. I have been blessed by your presence in my life.



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