Learning how to live, half alive

Ronan. My heart is still heavy. My mind is still a mess. I didn’t cry today though. I have no doubt that my pillow will be soaked tonight when all is quiet and the memories of you trickle in. Night time is hard. I fall asleep and wish for you to wake me up with one of your famous, “Good morning, Mom!” You were always so excited for our days. Back when you were healthy I would pretend I was still asleep just so I could listen to you run to my room after you had woken up to give me a kiss and tell me good morning. It was one of my favorite things in the world. You would never want to get in bed with me and cuddle; instead you would demand that I get up to make your breakfast and wake up your brothers for school. I was always happy to do this for you. Everyday with you was the best day of my life. I can’t believe I will never have that again. I would give anything for you, Ronan. I remember how when I would take you out, how many people would stop me to tell me you were the most beautiful boy they had ever seen. I used to joke with Tricia that I felt like I was with a celebrity when I was with you. We called you our mini Brad Pitt baby. You had an impact on everyone even before you were sick just because of the beauty that people saw from the outside. They didn’t even know the beauty you possessed on the inside. I still can’t believe you aren’t mine anymore. I still don’t understand why you had to leave. I asked Dr. Maze if he thought that you heard me as I was talking to you before you went… those last few minutes when I told you it was time to go. When I told you to come with me, because we were getting out of this place. He says he thinks you did, as many people say a persons hearing is the last thing to go. I wish I would have said more to you. I wish I could have told you everything I was feeling in my heart but that would have been impossible. I know you know how much I love you. I will never get over the fact that I alone couldn’t save you. I’ll always think that I let you down because I couldn’t fix you. I know there was nothing I could do as your disease was so uncontrollable but that guilt will never go away. I am so, so, sorry Ronan. I would have traded my life a million times over for yours. I think about this every single day.

I’m not sure what just happened…. except for while I am writing to you I am of course listing to Pandora. I have it on the Coldplay playlist. Right when the tears where pouring down my cheeks, this random song came on. One I have never heard before but here are the lyrics…….

Come thou fount of every blessing
Tune my heart to sing thy grace
Streams of mercy never ceasing
Call for songs of loudest praise
Teach me some melodious sonnet
Sung by flaming tongues above
Praise the mount I’m fixed upon it
Mount of thy redeeming love

Here I raise my Ebenezer
Hither by thy help I’m come
And I hope by thy good pleasure
Safely to arrive at home
Jesus sought me when a stranger
Wondering from the fold of God
He, to rescue me from danger
Interposed His precious blood

O to grace how how great a debtor daily I’m constrained to be!
Let thy goodness like a fetter, bind my wandering heart to thee
Prone to wander Lord I feel it, prone to leave the God I love
Here’s my heart, O take and seal it, seal it for thy courts above

Whatever. I’m still too mad to think this is anything. But I will say that the piano playing this song was pretty. I miss you so much. I know I tell you this all of the time, but I will miss you for the rest of my life. I worry so much about you. I still cannot believe you are safe and happy without us. How could that be possible? I know I took better care of you then anyone. You deserve to be with me still. Your daddy watches me and the way I sit and am still with my thoughts. He knows I am tortured. I actually said to him that we made a mistake with your treatment. We should have done this, we should have done that, we should have been more aggressive. I know I am wrong about this. Nobody knew what was to come. Your daddy talked to all the best doctors and they all agreed with what we were doing. I told your daddy we should have had you scanned after every round of chemo. Nobody would have done this for us. But this is the only way we would have known that everything was spreading so rapidly. The day of your last scans, at Sloan…. Dr. Kushner’s face will haunt me for the rest of my life. He knew you were going to die. He couldn’t even look at me, Ro. Walking out of Sloan, they all knew you were going to die. But I wish they could have told me, instead of avoiding me and my tears. I don’t think badly of Dr. Kushner at all. If I saw him today, I would give him a great big hug and thank him for all he is doing to try to figure out this disease. I guess I’m just having a hard time because I feel like I didn’t get closure with him. I feel like he owed you more than the send off he gave us. But I also get that he is a man. A brilliant man and an amazing doctor. And I am sure he feels like he failed us and that is a hard pill to swallow. I get all that. But I also get that you deserved more, little man. Because you are going to change the world of this disease and I know someday he will be telling you thank you, Ronan. I will make sure of this. You will not be forgotten by him. And someday, I hope to replace a new image of him in my head from the awful one I am left with. I don’t want to carry that around with me forever.

I drew your name in the sand tonight while I was on my run. I went for a run on the beach in the dark. It is the only way I like to run now. In the dark, alone, where I don’t have to look at anyone in the eyes and I don’t have to see all the happiness surrounding me. All of that stings so badly. I don’t know if that pain will ever go away. We used to be that family. The perfect family that had it all. We had it all because of you. Now we are all so wounded, so empty. Although I did hear your brothers laughing today. I played with them all morning. I tried to stay focused on them, but my mind kept wandering back to how different everything would be about our day if you had been with us. Nothing about our day would have been the same; you changed everything.

G’nite my little man. Everyone is asleep now. Quinn is right next to me, all cuddled up with your blanket, GiGi. I’m going to cuddle up to him now. See you in my dreams, baby doll. I love you.

xoxo