I was never going to be ready for today.

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Ronan. I was not prepared for today. I was not ready for today. But today happened anyway. It started off pretty normal. A normal check up at Dr. Schwartz’s office. I didn’t even have to see her, I just had to sit in a chair for a good 45 minutes so Poppy’s heartbeat and movements could be monitored. Just routine stuff that I’m having to do, twice a week now. It’s always quiet in this room and it’s easy for me to relax and get lost in my thoughts. Today, I thought alright. Of course about you. I was sitting there listening to your sister’s heart beat and she seemed to be moving non stop the entire time. I know she doesn’t have much room and there, but she doesn’t seem to care. Her movements are strong and never seem to stop. I had a flashback to that time I was at Sloan with you. We were back in a room and they had you hooked up to a machine  where we had to listen and track your heart for a couple of hours. I remember being up on the bed with you, holding you and trying to keep you entertained. You soon fell asleep in my arms. The next thing I knew, I was laying there with you but I was silently crying. I remember I was so overcome with emotion over sitting there listening to your little heartbeat. It was the most beautiful sound I had ever heard and I knew how lucky I was that it was still beating. We didn’t know at this time that your cancer was spreading, but I was just so grateful for your little beating heart. I hated that you were strapped up to a monitor when you should have been just out and about playing like a normal, healthy 3-year-old but I found the beauty in our day, anyway. I’ll never forget that day with you. It sticks out in my mind all the time. Today, listening to your Poppy sister I was taken right back to that day and the tears seemed endless.

I got out of my doctor’s appointment after a couple of hours. They were way behind today and I came home for a sight that I was not ready for. Your daddy and I have talked for a couple of weeks about taking the furniture out of your room to have it refinished to the color that will match Poppy’s crib. I came home to your daddy who had informed me that the people refinishing your things, would be at our house to pick everything up in a few hours. This meant drawers had to be emptied, toys dumped out, clothes moved, stuffed animals pulled out from the storage area under you bed, etc…Your daddy asked if I could empty out your dresser. I started crying and simply just told him, “No.” He did it. He did most of it. By the time the people got to our house your little room had been completely torn apart and I could do nothing but sit on the couch and cry. The lady working with us could not have been sweeter as your daddy had explained our situation to her on the phone so she understood what was going on. She told me how she had some bad luck, too as she lost one of her sons at 17 and also one as an infant. I could hardly get two words out as I was trying my hardest to somewhat control my sobbing. Your daddy was the one who told her he was sorry and did the rest of the talking as I just sat there in a cry fest trance. Your little room that I’m pretty sure I had made up in my mind, would never be touched, has totally been taken apart. I know we are going to put your things back but it still does not make any of this easier.

I sat in your room for a long time today. On one of your mattresses. I sat on the phone and cried to the couple of people I talked to. Thanks, Meg and Stace. I told them both how I was staring at your side of the empty room where your bed once was but now the only thing left there were a few of your Star Wars guys that had clearly fallen off of your bed because you would always insist of sleeping with 50 of them. I texted with Fernanda a bit. She is going to come over tomorrow to help me figure out how we are going to put your room back together while making it Poppy friendly, too. I am lucky to have such good friends who are truly there for me at all times. I am so lucky in that regard and so thankful.

The past couple of days, my emotions have been building up. It was your Sparky’s birthday. I remember his birthday from a couple of years ago when we were in New York. You made me take an extra special picture of you to send to him just for his day. It’s one of my favorite pictures of you, even though your body was all marked up with a Sharpie Pen from your radiation and your little arm was hurting so badly that they tried to make you wear it in a sling which you of course refused to do. The smile on your face was priceless and your eyes were so bright and beautiful as I was taking this picture. They were shining like diamonds. You were so excited to take this picture and send it to him. We called to tell him, “Happy Birthday!!” and I remember you saying this in your squeaky little voice that was full of so much love and happiness. As always, I did my best to try not to be sad on his birthday but I wished more than anything that it was you sitting by my side as I watched your Sparkly open up our gift and two cards. One card from me and one from the both of us. I of course signed your name on the card I picked out from you, to him. You would have liked it and called the card, “cute.” I sat and watched your Sparkly read our words and open our gift. I watched as he chuckled at something while the corners of his eyes got wet. It’s a sight I’m so used to seeing with him. That bittersweet happiness that I know all too well.  I did my best on his day, for you but it was still hard to hold it together without you by my side. I know your Poppy sister will help with things like this when she makes her little entrance into the world. Maybe days like this will become easier and help with the sadness because the happiness I know she is going to make others feel is going to be infectious. Next year it will be nice to have her by my side on days like your Sparkly’s birthday.

I spent much of the day and evening crying. Today was a hard day to get through. I literally went to bed telling myself, “You made it through today and you didn’t die. The pain didn’t kill you.” I’m always so amazed that it doesn’t. The sick joke is I know what I’m waking up to tomorrow and how none of this ever goes away. I don’t get to escape this. I still have to wake up to your totally disassembled bedroom that I said I would never touch. I was never going to be ready for today. You can never be ready for something like this.

I’m tired but restless. Of course, I’m not sleeping well. It’s because of my not sleeping well at night that I’ve noticed that we have this fucking bird outside of our bedroom that seriously sings all day and all night long. I don’t understand this as it’s only something that has started a couple of months ago. What kind of bird, sings all night long? It’s annoying to me and I don’t feel like hearing it’s song. Tweety bird, tweety bird please shut up. Between that and your empty room I’m surprised I’m not outside stalking this bird with my BB gun. That is totally a very Maya Danger thing that would have happened last year when I was in my Danger Baby phase. I’ve been stalking this bird to try to find out where it is hiding but I’ve only been stalking from it from the inside of our house. My body is too tired to truly investigate. Stupid bird.

Time to go, little man. It’s late and I need to try to get a little sleep before I have to start today all over again, tomorrow.

I miss you. I love you. I hope you are safe.

xoxo

P.S. Thank you, Taylor for what you did tonight. You are such a light that keeps me going even on my hardest of days. I know Ronan is so proud of you for all you are doing. So am I. I love you.

 

Your Happy Birthday Sparkly smile. I love you.
Your Happy Birthday Sparkly smile. I love you.

Oh, Hey Cancer! Fuck you! Seems like an appropriate title tonight.

Ronan. Your daddy left for Vegas. This means I get to hold down the fort while he is away. Normally this wouldn’t be a problem in the pre Ronan is not dead days. Now, doing things like keeping your brothers entertained on their fall break, solo, is hard fucking work. Don’t get me wrong, they are easy boys. And if you were here, I have no doubt we would be off doing things like going to the Pumpkin Patch, shopping for Halloween costumes, and having lots of adventures. You know what is right around the corner. Your most favorite holiday. Halloween. It used to be my favorite holiday, too. Now it just makes me extremely sad. Last year, I dressed up like a dead zombie because that is how I felt. This year, I’m not feeling like doing anything except burying myself in a big hole in our backyard. I have not carved pumpkins with your brothers yet, or gotten their Halloween costumes. We have been talking about what they want to be. Of course I always wonder what you would have been. In my mind, you would have been a different Star Wars character every year for the rest of your life. I don’t think you would have grown out of your Star Wars phase just quite yet.

Today, Liam and Quinn’s fall break consisted of therapy. It was Liam’s day to be with Dr. Rachel. It’s been a while since he has seen her. I went in and talked to her before hand. I told her that I have been having to talk about your last days a lot, with everything that I have been doing. I told her I was worried because we had not really talked about it in depth with your brothers. We agreed that she would dig deep today, without pushing Liam too much. I waited in the waiting room with Quinn. My mind was racing and of course my heart was breaking thinking of the conversation that was taking place in the next room. What a great way to spend fall break, huh. Liam came out after an hour, his little eyes all red. I got up and left him out in the waiting room with Quinn while I went to talk to Dr. Rachel about how the session went. I listened to her tell me how Liam talked very openly about the sadness he feels over losing you. How during the time when you were dying he told himself to be a good brother, to be brave, to be strong, and how he wanted to be somewhere else. He told Dr. Rachel he told you the same things. He cried a lot when talking about all of those things. She told me he has a higher emotional intelligence than most kids his age. How well he was able to verbalize everything that he was feeling. I wiped away my tears while listening to this. I felt like punching the wall and screaming, “WHY THE FUCK DID THIS HAVE TO HAPPEN?!! TO THE BEST BIG BROTHERS IN THE WORLD?!!!” I got up and told Dr. Rachel thank you. We decided that it was best for now to let Liam talk about these things in his safe space with Dr. Rachel. I asked Liam in the car if he wanted to talk about anything. He told me he did not, so I left it at that. I am just thankful that he is opening up to someone.

I picked up a friend of your brothers so we could have a play date. I took them over to The Village to play basketball, football and swim. I was sitting outside, under the shade of course with my dark sunglasses on because I have developed an allergy to the sun called, “I fucking hate you.” I was watching your brothers and their friend swim. I was trying not to get too sad that there were 3 boys in the pool and one of them wasn’t you. Just as I was sitting there, a little hummingbird came flying right up to my face. It stayed there for a few seconds. I smiled. I thought of you of course because little hummingbirds don’t happen often in my life, but when they do it is always when something really important or sad has happened and I need a little sign that you are around. 3 minutes later, my Twitter alert went off. Somebody had tweeted me that our friend, Super Ty had passed away. My stomach dropped to the floor. I sat there for a few minutes. I didn’t cry right away. I thought about the hummingbird and how that was your way of telling me you were going to take care of Ty now. Hot tears rolled down my cheeks as I watched your brothers laugh, splash and play. I sent your Sparkly a text about Ty because he knows how he was our roommate at Sloan. I told him that he had passed away and how cruel life was. I told him about the hummingbird too and how I knew it was a sign from you and how you would now watch over Ty forever. He told me that he knew that you would, too. My tears didn’t stop for a few minutes. I’m so sorry to Ty’s mama, daddy, little brother and to all who knew and loved him. I’m so sorry to Ty. Will this cruel world ever get better, Ronan? How many kids is it going to take, before people start paying attention to the point where everyone finally says, enough is enough? When is this sick cycle of kids dying over and over and over from cancer going to end? When are people going to stop looking away because it can’t happen to their child, right? I know I am making a lot of headway with everything we are doing, but some days I feel like how long is this going to fucking take? And what is it going to take for everyone to wake up and join in this fight with me? Am I going to have to organize a freaking protest or something? When will our government really step up to the plate and what can I do to make this happen? Somebody get me on the phone with Obama. Seriously. Too many parents are losing kids. Too many kids that are still here, will suffer for the rest of their lives. They deserve to stop being overlooked. They deserve better treatments and options. I don’t want another mom to have to sit down with their other children and let them look at the ashes of their dead brothers body. I am beyond heartbroken and if things continue to stay this way, I just don’t know what I will do. Really, how hard do I have to fight? I feel as though it is all I am doing, 24 hours a day. Will things ever get better? If my post seems hopeless tonight, it’s just because I am so very sad over Ty, Ronan. I hope you two are both playing together in your super hero capes. Take good care of him sweet boy. It shouldn’t be this way.

I’m going to end this here. Your brothers had a good day. I tried my best but as always I carry so much sadness around in everything I do. I miss you so much. G’nite Ro baby. Sweet dreams. I love you to the moon and back. I hope you are safe.

xoxo

P.S. Hey Cancer. Fuck you.