Soho and a Circus

Ro and I started off our morning the way we usually do. Cuddly and quiet. We sat and played in his bed and enjoyed our quiet time together. My mom came to the hospital with Tricia around 11. So happy to see my bestie. Ronan was not a happy camper at first, but he soon warmed up to Trish. It’s his whole I know my mommy is leaving thing that gets him into his little moods. I told him I was going home to shower and he agreed to let me. Thanks Sarg, as my New York Miss Macy likes to call him. I headed out the doors of Sloan with Trish and we went back to the RMH so I could shower and get ready for our few hours out. We figured out which Subway we needed to get on to get to SoHo… Woody  would have been SO proud. I am determined to master that thing by the time I leave here. We spent a few hours in Soho roaming the streets and had a bite to eat. It was so nice to catch up with my TT and to actually get to hear about things that are going on in her life. She is so concerned with mine that the phone conversations we have usually consist of what is going on with me and Ronan. I hate that. I hate that I feel like I am missing out on the little things that are going on with her, even if it is knowing what she is doing for lunch. I used to be so spoiled in that regard and would know what her entire day/night consisted of. I miss that so much. The simple things, the little things, the nothing is new because we talk 5 times a day about anything and everything and nothing. There is no more nothingness now as everything is wrapped up in this cancer cloud. The innocence has been lost forever in my life and I will never get it back. Neither will my best friend. But we keep holding on, telling each other that we will be stronger after all of this. Totally see a trip to Vietnam in our near future, TT 😉

After our Soho day out, we rushed back to RMH and I threw together my overnight bag so I could return to Sloan. My friend, Ed, emailed me a couple of weeks ago in regards to seeing a Broadway show. I told him about my mom and Trish coming into town and the next thing I knew we had tickets to “Billy Elliot.” Somebody he knows (a very kind person indeed) treated us to the show. THANK YOU, Ed’s friend:) I wasn’t able to go, due to Ro being in the hospital so I sent my mama, Trish, a woman, Barbra who runs this amazing organization called The Candlelighters in NYC, and a mom and daughter(who is 7 with cancer) to the show. They had an amazing time. It meant so much to me. This is my mom’s first trip to NYC and one of my wishes was for her to go to a show on Broadway. It should be something that everybody checks off their bucket list. It felt so great knowing that my mom was getting to do something that is so special to me; she deserves it so much. Thank you, Ed for organizing this. Thank you, Barbra, for taking such good care of my mom and Trish. They loved you and I cannot wait to spend more time with you. What you do for other cancer families is simply amazing.

I spent the night here with Ronan doing our usual thing. We made slime with the Childlife guys, played more Star Wars and I fed him dinner. We had a very special visit with my dear friend, Niki. It was comical and sad all at the same time. Niki, who is here with both of her young children put them in a cab and came to Sloan with cupcakes and dinner for us. I told Ronan that they were coming by and asked if I could go out to the elevators on our floor to say hi and grab our food. He said yes but was upset they couldn’t come in our room to see us. I left him in his bed and ran out to see Niki and the kids. I was greeted by the best giggles, smiles, hugs, and tears in the world. It was so nice to have my friend wrap her arms around me and hug me the way she does. She gives great hugs. I chatted with them for a few minutes then decided to go back and see if Ronan would come out to say hello. He agreed so I picked him up, and wheeled his “asspole,” out to the floor of our room. As I was wheeling it down the hall I was suddenly hit with a moment of panic wondering how Laely and Wesley would react to Ronan’s pole and the tubes coming out of his little body. My panic almost stopped me in my tracks but I then remembered feeling the same way over Laely seeing Ronan’s bald head for the first time and the conversation I had with Niki about it and how Laely didn’t even notice. To her, she was just seeing her friend, Ronan. She doesn’t get that he has cancer (they are the same age) she’s not scared of him… to her, he is the same little boy as always. The world is exactly as it should be in her eyes. Seeing those 3 kids tonight was the best medicine in the world. This is how our world works now, and we have to make the best of it. So tonight, Ronan got to see his friends through the glass doors of our floor as they could not come in and we could not go out. I held Ronan and watched as Laely and Wesley smushed their faces up to the doors and I got down on the ground and kissed them through the glass. We laughed, played, and loved. It was the best 10 minutes Ronan’s had in a very long time. Made both of our nights and we all parted way smiling.

Ronan and I then came back to our room to prepare for our nightly walk. Tonight though, he insisted we take all 4 of his guns with him and the very special balloons that were delivered to him from Dr. Maze today. I tried to talk him out of him out of taking the balloons with us, but he went into complete meltdown mode. (Thank you, Aubrey… you would have loved the smile those balloons got you:))) Ronan wins. I tied the bundle of the biggest, cutest, animal balloons in the world, onto his pole and I somehow managed to walk the halls with him for 30 minutes without breaking my neck. I couldn’t see a thing and everybody kept saying we looked like a circus. We got a lot of laughs tonight and went on a very special mission to try to find our nurse, Jen, who was hiding from us on the floor. She would jump out at random places and Ronan would blast her with 2 of the 4 guns that he made me carry. Very entertaining night around here. I swear, I’ll do anything to hear Ronan laugh these days.

After our walk, Ro was worn out so we came back to his room and snuggled in his bed. He kept telling me how much he loved me and we sang our nightly “Twinkle Twinkle Little Star,” together and he soon drifted off to sleep. I am listening to his little breaths as I sit beside him and write this. It’s my favorite part of the night, watching him sleep. We’ve been in the hospital for 3 weeks now, 21 days, 504 hours…. this is complete insanity and unfairness. I would give anything for this to all go away. I would give anything to be at home with my family, where I belong, taking care of my Liam who had to stay home from school today because he is sick with the flu. I would give anything to be the normal mom again. Except this time, I wouldn’t whine about my child throwing up all day due to the flu. I would be SO VERY THANKFUL. I cannot wait for the day that Ronan is well and this happens to me. One of my kids gets sick with only an ear infection, a cold, or the flu. It will be one of the best days of my life.

While I was sitting here writing tonight, I got an email from my friend, Jon who is cousins with the little girl, Phoebe I talk about sometimes on here. She was Ronan’s last roommate at Sloan and I just had lunch with her mom the other day. Jon came to visit us a couple of weeks ago before he took the train to visit Phoebe and her family. Love him.  I’ve been feeling pretty strong these past few days but a paragraph into Jon’s email and I was bawling like a baby. Not because I was sad, but because the things he wrote to me hit such a nerve. His words were filled with such truth and light and it was as if a little light bulb went off in my head. “DINGDINGDINGDING!!!!” I am doing this. Woody is doing this. Ronan is doing this. Phoebe is doing this.  We are all doing this and we are all going to get through this. We are too strong not to, Ronan is not going to let this cancer crap win and neither am I. Jonathon, somebody who did not know us at all, knew this after only spending a few days with us; just like the way I knew it about Phoebe within a few minutest of meeting her. She had this look in her eyes and I just knew she was going to come out the other side of this only more beautiful than ever. The same look that I see every time I look into those baby blues of Ronan’s. Fuck the statistics and fuck the odds. I refuse to listen to them because they have nothing to do with Ronan.

I’m ending my writing tonight with  Jonathon’s email (with his blessing) because his words are raw and real and give me strength. I love you and your beautiful family so much. Thank you for this gift tonight, my friend.

Goodnight to you all, my lovely souls. Thank you for all of your kind words, thoughts, prayers, support and love. But most of all, thank you for BELIEVING.

xoxo