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

Maya,

This is a quick note, not meritorious of a response. I’m writing tell you that you are a fucking badass. I’ve attempted to think of other ways to write this, less vulgar, more poetic, but fuck that.
I met a lot of folks at Sloan, visiting Phoebe for 6 months, or 8 months, or 10 months, or whatever the hell it was. And I worry about her every day, still. But the point of this note is to tell you that I knew you and Ro for only 4 days, and I saw that you were tired, and pushed against a wall, and still, more than anyone else I’d met, I knew in your eyes that you’d already won.
This was easy to see. I saw your resilience.
I don’t know anything about life. You called me out as a young fool, and you’re right, I know jack shit.
But I saw you, and Ro, your chests held high, and your smiles wide, and I felt your presence. Through those hideous turquoise plastic-felt curtains they threw between us, I felt your laughter, and your brilliant fuck-all attitude regarding the drivel we go through.
So this is one STRONG vote, from a kid in Chicago, saying laugh at their shit. Laugh at the crappy cots, and laugh at the exuberant candy-stripers, and laugh at the folks with FAKE smiles, because, let’s be frank, this is some bullshit. But that’s okay. Bullshit is bullshit is bullshit, and when I saw you, and Ro, and Woody, I saw the people I’d stake my livelihood on. I saw people I’d lay down in front of a train for.
Thanks for making me proud. Next time you feel that it’s too much, don’t worry. Just know that you’re already the most badass person I’ve ever met. You can do anything.
With love,

Jon

Truest intentions, purest of hearts

I need to get my shit together today. My house looks like a bomb went off in it, I can’t stop crying, and I think I just picked my nightgown up off the floor and beat the crap out of my bedroom wall with it. Don’t worry. Ronan didn’t see this… he was playing in the other room. He did hold me though, while I cried in his lap. He patted my head and held me. I needed to let some things go today, and I did. Everyday is so different from the next. I never know waking up what the day will consist of, how I will feel, or how Ronan is going to act. The inconsistency in my life makes me nervous and anxious. Today, I have had a pit in my stomach the entire day and I can’t seem to get rid of it. The reality that surrounds us is overwhelming at times. Thank god for good friends who I can call on. My friend, Gay, called me right when I needed her most. My friend, Pamela White (who has been a GODSEND) let me vent and gave me advice…. Little Jack’s mom, Laurie, always puts me at ease. Just hearing her voice and the updates on Jackers helps me get though the days. To people who are walking to the end of the earth and back for us, to the people who refuse to let go of my hand, to the people bringing dinners and helping with Liam and Quinn, to the people who know just how to make me smile…. Please know how thankful I am for you. The fact that you are walking though this with us and supporting us so much, means the world to our family. We are so lucky and thankful for all of you. It speaks volumes about the kind of people you are in the way you choose to live your life and I will FOREVER be thankful, humbled, and amazed<3 You all have changed my life and the way I view the beauty of family, friends, and strangers. You have taught me to question everything and accept nothing but the best for me and my family.

Last night I went out for dinner with 3 of my dearest friends. I was able to let go a little bit and live in the moment surrounded by strength and love. I went to the best restaurant in town, Tarbell’s, with my friends, Niki, Jen, and Lindsey. The place was packed, food was amazing as always, and the service was above and beyond. And it has nothing to do with the fact that I was with the bosses wife;) I sat with my 3 darlings, for 3 hours. We shut the place down and I left there feeling extremely blessed to have spent the evening surrounded by those 3 incredible women. They are more than friends to me; they are my sisters. I would trust them with my life and the life of my children. They are the type of friends who would never let me down or let me fall without picking me back up. I need them more than ever at this time in my life. I get that I am asking a lot from my friends right now…. but my true friends, are the one’s I have to ask nothing of; they just give and do because  they have the inner strength to see me through this. Their intentions are true and pure… there is no bullshit or superficialness. I worship them and if the tables were turned, I would be there for them in a heartbeat. They know this of me… they get the bigger picture of all of this.

Once Liam and Quinn got home I put everything that has been going on inside my head, on hold. I made them a snack, took them for shaved ice, and we went outside and played in the backyard for 2 hours. We took every ball in our house and put it in our big, grassy yard and played soccer and dodgeball. Ronan had a BLAST. He ran, kicked and threw his balls for an hour straight. The strength and power that boy has when it comes to anything physical is insane. He is so coordinated and fast. We took a bunch of glow sticks when it got dark and shaped them into frisbees and threw them up in the air and at each other. It was an evening full of laughing and playing. Woody came home, scarfed down some dinner (thanks Jules) and took Liam and Quinn over to The Village for basketball practice. My poor, tired, husband. He worked so hard today.. and I can tell he is exhausted. But he will never let us down or complain about anything. He came home with a smile on his face and a big kiss for me and off to practice they went. Love that man.

I feel like a kept woman with Ronan. Seriously. The little man decides my every move. I’ve got to get some control back with him. My sweet Sarah, whom Ronan LOVES… came over to peel me off my floor today. Ronan threw a fit about having her here. I can’t win. I need help, want help, ask for help…. but Ronan is so territorial of “his house.” He wants nothing to do with visitors and ends up slamming doors and screaming in his room the entire time someone is here. And Sarah is like family to us. He let her stay for a little bit after I bribed him with a toy and we played Star Wars with him. Sarah took over with the playing and I was able to get a few things done around here. Then we “locked” Sarah in the laundry room (that was the only way he would let her stay) so she could fold my laundry. Sarah the Saint. She has been so helpful to me and I know she would do whatever I needed her to, if Ronan would just relax a little. I have a list a mile long of things I need to get done before we check into the hospital for Round 4 of chemo on Monday. Tomorrow, we go to the clinic and I am hoping to help in Liam and Quinn’s classroom for their Halloween party. That leaves me Friday to get everything done. The weekends are usually pretty busy around here and I don’t want to spend my time getting caught up when I could be spending it with my boys.

So tired tonight… but one last thought….All of his kisses mean that much more. Every smile, laugh, hug, I love you, that come from Ronan, wash away all of the sadness and anger that I feel… for a few moments. It doesn’t last long, but it is oh so sweet.

“I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” -Dr Seuss (Thanks Dana)

Stupid bloody nose

Stupid bloody nose. Those were the words I heard all day long. Ronan had a handful of bloody noses over the weekend, but nothing that we couldn’t control. Last night, he wanted to sleep in his own bed so I let him. I slept in his room with him, but in the other bed. I fell asleep around midnight and woke up to noises that were coming from the livingroom. Ronan was sitting on the couch, upset over his nose that was bleeding. I don’t know if he was upset because he didn’t know where I was or because of the bloody nose. All I know is he was pissed and wanted nothing to do with me. It took me a good hour and a half to calm him down and get him back to sleep. He was slamming doors, screaming, and crying. I think it was a combination of him not feeling well and me not being in his bed with him that upset him so much. We had an appointment for the clinic at 10:45 this morning, but I called and got us in early. From about 9-4, Ronan had a pretty consistent nose bleed. His platelets were really low so they transfused him twice. He also received some blood. My body physically aches from all we went though today. It seemed like all the pinching in the world could not get the blood to stop. We were covered in his blood by the time we went home and his little nose is so sore and raw. He was so upset by the whole thing that we had our nurse, “A,” give him a sedative, twice. Mimi Kay stayed the entire time with me, thank god. She helped to get me new Kleenexs, and wiped me down with baby wipes when I was covered in blood. Now that’s a good mother-in-law right there;) Finally, around 4:00, it subsided but we waited until 5 to go home. Once we got home, Ronan was off and running full force; despite me trying to keep him relaxed and calm. He threw a bit tantrum about wanting to go and get shaved ice, so I took him to the little place right by our house. I figured after his day, he deserved it. Since we’ve been home, he has been fine. But one more nosebleed and we will have to be admitted into the E.R. Praying that this does not happen.

Sitting in the clinic today was hard. You know what’s sadder than a 3-year-old with cancer? A teenager with cancer. I have decided that after spending the afternoon, surrounded by older kids with cancer. As I watched them, I felt like my heart was breaking into a million pieces all over again. At least Ronan doesn’t understand what is happening to him. He just finds it more annoying then anything. He is so fiercely independent, and I know a big part of his anger is not being able to be independent anymore. But he doesn’t get the jist of it.. the bigger picture of all of this. These older kids, understand everything. They understand mortality and what they are up against. I can’t imagine what they must be going through or feeling. Thinking back to when I was a teenager, I was so clueless. I had no idea that I was so blessed to be a healthy kid… I will never look at teenagers the same again. Especially one’s with cancer. Add them to my list of heroes.

Okay… I am so tired my eyes are blurry. Hope I even make sense tonight. Going to try to get some sleep. Thanks for all of you who were thinking of our precious Ronan Baby today. Big huge virtual hug to you ALL!

Sweet dreams, my angels.

xoxo