Jar of hearts


Tonight, I honestly sat here and could not remember what month it was. It literally took me opening up my calendar on my computer to figure it out. That is how fried my brain is. What even happened today?? I’ll have to sit back and reflect so that I can tell you. We were all tired from a rough night, so slept until around 10:30 East Coast time…. 7:30 your time. Seemed so late but it really wasn’t as we have not adjusted to the time change yet. Once Ronan was up, we spent the morning playing and I snuck out around 1 to go back to the Ronald McDonald House to shower and change clothes. I called Fernanda and had a hard time talking to her due to just having a hard couple of days. I hung up with her and ended up being hysterical so I called Auntie Karen as I really needed to hear her voice. I just could not stop crying this afternoon, no matter who I talked to. After I hung up with her, I decided that I needed to go on a run. I laced up my shoes, and headed to Central Park. I cried most of the way… WTF?? I cannot seem to hold it together when I am away from Ronan. I do well with him, but when I’m by myself, I seem to have a hard time. My run was alright, gorgeous day, but I only ran about 5 miles due to my pounding headache and lack of energy. I came back to the RMH, took the hottest shower possible, and somehow managed to throw a bag together to head back to Sloan. I ran to Starbucks before heading back to the hospital and caught a glimpse of myself in a window as I passed by it. I had to laugh out loud at the outfit I had dressed myself in. To say I looked like a cute hobo is pushing it…. I was a mess from head to toe and topped it off with my favorite bright green North Face fleece hat on top of my head. Seeing myself gave me a good chuckle which is something that I really needed at the time. I sat in Starbucks and waited for my coffee and called Tricia to check in…the conversation started by me telling her that this cannot all possibly be real, that I still don’t believe it, because no matter how wild of an imagination I have, even I couldn’t make up the crap we have been through the past few days. I ended up bawling while on the phone with her in front of a coffee shop full of people. I don’t even care anymore…. I don’t care how ridiculous I looked, the stares, the wondering on people’s faces. I love that in this city, full of so many people, that I can completely break down and it doesn’t phase me in the least. I’m not going to hide my tears here; I’m tired of hiding them back home due to being so worried about my twins seeing me or because I am so caught up in our everyday life that it numbs me. Here, I am not numb, and as painful as it is, it is therapeutic in a way as well.

I returned back to the hospital to a very happy baby boy who was sweet as pie. He was so happy to see me. Woody was in bed with him and they had been playing Star Wars. It was so adorable to come back to. Ronan was due to get his second round of radiation at 6 p.m. so I told Woody to go shower as I didn’t want to be alone for it again. He left and soon after Ronan got sick to his stomach due to the chemo. They are giving him round the clock anti-nausea meds, but that isn’t enough. I had them give him another dose of something else before we headed down to the second floor for his “pictures.” Woody arrived just in time and we headed down to get started. Once again, Ronan was a champ. I set him up on the table, and watched as they raised him up high to start his treatment. Woody and I both kissed him and said we would see him in a few minutes and we left the room. We watched him on the monitors and talked to him the entire time. I cried once again. It’s really hard for me to watch him do this. The whole thing took was super fast today and took only a few minutes. So glad for that and so thankful he is not needing sleepy meds to do this. It makes it so much easier.

After radiation, we came back to the room and Woody ran out to get pizza from Ro’s favorite place and soup for me. Ronan didn’t eat much due to still being a little sick to his stomach but I did get him to eat a few noodles. We had a little bit of a scare while we were sitting in our room. Ronan was on my lap, shooting his pistol gun, and I looked down and he had completely stopped what he was doing and he was out like a light. I tried for about 30 seconds to wake him up, but he was out cold. I flipped out, told Woody he had passed out and to call the nurse which he did. I got him to wake up and within seconds we had a few doctors and nurses in our room checking his blood pressure and heart rate; all which were fine. I’m not sure what happened.. I don’t think he passed out as in fainted, but passed out as in from exhaustion. I think it was a combo of not napping today, chemo, radiation, morphine and anti-nausea meds that hit him all at once. It scared me to say the least. He ended up being fine and woke up and played for the next hour. I asked the doctor to reduce the amount of morphine they are giving him as I think it is making him a little loopy. They decreased it and he seems to be sleeping peacefully.

Woody is out like a light as well. He is beyond beat and is having a hard time too. It’s hard for me to see him this way, as I am so used to him playing the strong, lawyer, perfect husband and daddy role. Tonight he told me he is scared, which I of course already knew, but hearing him say those words is really hard on me. I’m trying my best to keep my ass kicking attitude going here, but it is hard when I know Ronan is in so much pain. This radiation just has to work on his arm so he can go back to the kid with cancer, who doesn’t feel a thing. I want my “healthy” boy back so badly.

I talked to Quinn and Liam tonight to tell them goodnight. I miss them every second of the day. We all do. I talked to them in my strongest voice and told them how much I love them and missed them. They sounded happy which gives me peace. Thank you Mimi and Papa for taking such good care of them. Thank you Lindsey for the text you just sent me with a picture of the full moon tonight saying you love me to the moon and back. After you sent me that text, I got up out of bed just so I could go and look out the window at the same moon as you. I love you to the moon and back too.

Time to get some rest here. Kisses and love to you all. Hope you are having a beautiful weekend. Thanks for checking in on us.

xoxo

Us right after radiation. That’s my boy:)

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6 thoughts on “Jar of hearts

  1. Nico

    I cannot tell a lie. My eyes well up with tears when I read this and I feel angry. I a mother of a 6-year-old boy and friends of the Weber family. I consider myself your friend too. I practice Buddhism and I have your son’s name on my altar. Every time I chant I send him healing prayers and today I envisioned surrounding him with love, health and protection. I am grateful for your honesty, courage, strength and willingness to share your life with us. I am so saddened your baby is experiencing this. I fucking hate cancer and so I LOVE Ronan and I thank him for enduring such pain to fight this disease. I have decided he has already won and that his body will catch up in health. I have determined this will be a story of his past . . . his story to tell. And he is the bravest boy in the world. I hope my words help. Words are so limiting to the expression of the vastness of compassion that I feel on behalf of your family. I am glad you cried in Starbucks, well done. Being honest, real, and expressing true emotion frees the human race from an emotional cancer that has dictated hiding for far too long . . . you are all heroes and crusaders in your family. I send you hugs, compassion, love and wish I could eradicate this disease.

    Love,

    Nico

  2. Willits family

    Love hearing from you and you do sound strong. I know it is not easy and it is good to break down when needed too. Loved to hear you laugh. I am still laughing;))). Hope you sleep peaceful and quietly:0 Xoxo

    Gay

  3. Gina F

    Maya,

    My son Elijah and I pray for Ronan and your family every night. I hope you find some peace in New York. Even with all you and Ronan are going through, you look beautiful and he is one of the most gorgeous babies I have ever seen. Take care and be strong Momma.

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