RoTay Magic Everywhere

Ronan. These past few days have been a whirlwind in the most amazing way. I took the red-eye on Saturday with Melissa to New York. We arrived at about 4 a.m. east coast time and a car from The Katie Show was waiting to pick us up. We got to our studio pad, a.k.a. the only place that I find peaceful, and crashed out in the bed that feels like you are laying on one giant marshmallow. It truly is something out of this world. After sleeping for a few hours, we got up and prepared for the day. Melissa ran downtown to meet a friend and I met our little, Rachel, at Bloomingdale’s for some lunch and of course, fro yo. After that, I parted ways with Rach and headed back to the upper east side, where I was staying. Melissa returned soon and we met up with your Fairy RoMo and her husband at the MET. We spent the day in the most glorious way, with not real plan. We enjoyed art, friends, laughter, and a ton of good food while we waited for the other girls to arrive. Later that night, Stacy and Fernanda arrived. We had made plans to meet up with our Fairy RoMo for dinner and I was dying for some good chinese food. Stacy, Fernanda, Melissa and I hopped on the subway and made our way to China town. We met up with our friends and I was so excited to introduce everyone. The introductions were way overdue and we had such a great night enjoying each other and the most unbelievable chinese food that I’ve ever had in my life! Poppy was very pleased to say the least. It was late by the time we got home and I crashed out in our bed with Fernanda. We were so tired, but we were determined to stay up until midnight to download Taylor’s new album from iTunes. We kept falling asleep. Fernanda would shoot up out of bed, “10 more minutes!” and fall back asleep. I dozed off and woke up right around midnight. “It’s time! We can download it now!” I felt like teenagers who were having a slumber party, waiting to get the new album of our most favorite artist. We both downloaded “Red,” with one eye open and quickly fell back asleep. We had to be up really early in the morning to be at the Katie Couric show.

Monday morning quickly came. We got up really early, got showered, dressed and ready. We met all the other girls, at the studio. Stacy, Melissa, Becca, Carolyn, Rachel, and Fairy RoMo. Everyone looked beautiful and the producers put us all in the green room where we snapped pictures and enjoyed the moment that we were in. Soon, we were swept off to take our seats in the studio audience. We had great seats and were treated like gold. Every single person on Katie’s staff is an absolute delight. We watched the studio fill up with the audience. There was such a buzz in the air. The Swifties were there, in full force and so adorable. I sat on the edge of one of the rows and felt more nervous for the show I was going to sit and watch, then the one I had taped just a week earlier. I wasn’t sure why. Maybe it was because I wasn’t sure what to expect. Maybe it was because for the first time, I was going to see Taylor and I had no idea how I was going to hold it together. Carolyn had asked the producers, if I could say hello to her and they said they would try to make it happen, but they were not sure as the day was packed. As far as I was concerned, I was just happy to be there, watching the show with my beautiful board members.
Katie Couric soon stepped out on the stage. Everyone went crazy. She is so darling and so good at what she does. She made some remark about how she knew who the audience was really excited to see, that being Taylor. She did a great little introduction and soon out walked Taylor herself, in the most adorable little goldish/yellow dress and sweater. She looks like Bambi. So tall, graceful, and young with a little bit of awkwardness about herself as if she truly does not know how beautiful she is. That only makes me love her more. The interview started and we were soon transported into Taylor world which is this world of all things sweet and salty. As in, the best combination of something ever. We saw the sweet Taylor who said things like, “I never want to be the girl who walks out on stage and says, Here I am! For me it’s always, Here they are.” Meaning her wonderful fans. I was floored when she said this. The self-awareness and the humbleness this sweet soul has, truly is remarkable. The salty/sassy side of Taylor played out as well. During a commercial break, Taylor yawned and Katie goes, “Did you just yawn?” Taylor quickly bounced back with, “No.” She has this totally adorable dry and spicy sense of humor that is so refreshing. It cracked us all up. My entire board was blown away by this girl who is so full of obvious brains, beauty and wit. She is one of the rare commodities of the world who truly deserves everything that has happened to her and who will never let it go to her head. In the world she lives in, that is so rare.
During one of the commercial breaks, I heard Katie Couric say to someone, “Where’s Maya?” They didn’t know where I was, but luckily Katie spotted me and I gave her a quick wave and smile. Katie whispered something to Taylor and they went on to the next segment. As soon as that segment ended, Taylor jumped out of her chair and came running up the stairs to me. I got up and gave her the biggest hug where I pushed back my tears with everything that I had. I just looked at her and said, “Thank you, so much.” We stood for a few minutes and talked softy about some things. She rubbed my belly and knew all about the baby girl that is growing in my tummy. She hugged me again told me she loved me and was so proud of me. I told her I felt the same way, that I was so grateful for what she had done. She asked how all the media was going and how I was handling it. We talked for a few more minutes about some other things. She knew about one of my secret plans that I have in the works that I have only told my inner circle about. It didn’t dawn on me, “how in the world did Taylor know this?!” until I sat down and had time to process our conversation. She said she was going to come back for some pictures. When I sat down, I noticed everyone looking my way and pretty soon everyone was whispering, “That’s Ronan’s mom!” They were waving and making hearts with their hands the way they always do for Taylor. It was such a sweet moment that I will never forget. Taylor did another segment with Katie and as soon as she was finished with that, she ran back up to me to take some pictures. We talked a little more. I asked her how she knew about my secret plan. She smiled and told me who had told her. She said, “You HAVE to do it.” I told her I knew and that I would. I love that she knew my secret plan and was on board with it. We talked about Poppy and she goes, “You totally have to name her Poppy. You’ve called her that since the beginning.” That made me smile, too. That Poppy name makes happy. I have definitely fallen in love with it. I told Taylor to tell her mom hello for me. She goes, “She is floating around her somewhere. I know she would love to see you.” I told her I would love that so much. She went back to the stage to get ready for the song she was performing. Everyone in the audience was so excited to hear her. She came back out and sang, her hit, “We are never ever getting back together.” It was absolutely adorable. Soon, the show ended and the girls and I sat in our seats, waiting to be told what to do next. Somebody from the show came over to me and said that Andrea Swift was wanting to see me. I was ushered off backstage where I waited for Taylor’s mom. As soon as I we saw each other, we embraced for the biggest hug. I couldn’t hold back the tears, seeing that woman. I thanked her for raising such an amazing daughter. We talked back and forth about everything. It was so strange as I felt such a strong connection to this woman who I just met, but felt like I had known forever. At one point, after she was thanking me for everything, she goes, “If I were in your shoes, I would be doing the exact same thing. We are all so proud of you.” Right then and there, it clicked. I understood why I loved this woman that I don’t even know. It’s because I know, she would die for her kids, the way I would have died for you. It’s because she has spent her entire life, after her children were born putting them first. It’s because she has fought for Taylor and her dreams, with everything she has. She loves her children with the same undying love, that I love you and your brothers and this Poppy. I could see all of that, just by looking into her eyes. That moved me in a way, that I will never forget. I will never forget the look in Taylor’s mom’s eyes and the kind words that came from her lips from one mom to another. At the end of the day, Andrea Swift, if in my shoes, would be doing the exact same thing that I am doing. Fighting with everything that she has for the rest of her life because there in NOTHING more important in your life than your children, dead or alive. I hugged her one last time and thank her again. I will never be able to thank that family enough for what they have done for us, Ronan, which is ultimately helping me to keep you alive. I will forever be eternally grateful for them and that amazing daughter of theirs that is wise beyond her years. One of the last things that Andrea Swift told me was that she thinks Taylor and I make a great team. I couldn’t agree more. I think many more beautiful things are to come.
After the show, Fernanda and I had a little adventure to tend to. We ran off while the other girls went and grabbed lunch. We were out for a few hours, having our eyes opened to an amazing world and we were so thankful to be a part of it. We returned back to the apartment, absolutely beat. It had been an emotionally exhausting day and we were both wanting to take a nap before the dinner that our Fairy RoMo had organized for the night. We laid down. Our plan was for a nap, but it took a very different turn. We ended up having about an hour sob fest over everything that has gone on, everything that we have went through. All of the love, pain, hope, suffering, and devastation of this entire fucked up journey of childhood cancer. She talked about how she she still can’t believe you are not here. How she thought even during your last hour, that you were doing to pull through. We talked about our day with Dr. Kushner and our pain and regrets with that. The why didn’t he tell us, you were dying? Why did he send us away with such a sense of blind hope when he knew, that you were going to die? She apologized over and over for not being there for the past year, but said she has been trying to process your death as well as my pain. She said she knows she has let me down. I tried to tell her, how she is one of the few people who has never let me down. How thankful I will always be for all she has done and how that I know when we are apart or when we don’t talk for a while, she is constantly thinking of us. I know this and I have always known this. Never in my life, have I had a moment of feeling let down or disappointed in that woman. She gave up everything to walk through hell with us and not once has she ever let go of my hand. I am so grateful for the time she had with you and the bond you two formed. I will always look at that as such a gift. We composed ourself, got up, washed our faces as our makeup was everywhere and got ready for the evening ahead of us.
We met up with Fairy RoMo, our board members, our “little ninja” Rachel, and Scott Kennedy from Solving Kids’ Cancer. It was a 3 hour dinner where my board got the chance to fall in love with Scott, the same way I have. He is the kindest, gentlest soul with the saddest eyes I’ve ever seen, besides my own and a few other parents I know, who have gone through this as well. I sat at the other end of the table from Scott and placed him near Fernanda and a few of the other girls as I wanted them to get to know him. It was only at the end of the night that we played musical chairs and I went down to sit by Scott to catch up with him. Our conversations are always intimate, sad, and deep. At one point, I had fought back my tears way too long and it was no longer working. I sat, listening to Scott while I wiped away tear after tear after tear. I never feel vulnerable crying around him. He gets the reason for my tears, more than most people. That breaks my heart so much. I wish none of us knew this pain. I wish that none of us knew this pain but I cannot change that. All I can do is sit here and form my army, to try to change this for all these other kids who are going through this or will go through this. I am so glad to have Scott as a part of my army. He is invaluable to me. We all left dinner and the girls were going on and on about Scott and how wonderful he is. I smiled and said I knew it from the very time I met up with him in that little NYC coffee shop. I’ve got a great intuition about people. Some might say it’s a gift;) I certainly think it is.
I’m back in Phoenix now, where everything seems to be moving full speed ahead. It was a great trip in so many ways. As a board, we got to bond in a way that we never have before. It was nice to get out of the business side of this and enjoy each other and all Ronan beauty that is everywhere. Everyone is so proud of one another, which makes me so very proud. You are doing such beautiful things, Ro. Thank you. I’ve got some secret side stuff to take care of right now. Blowing kisses to you, fingers crossed because once again, I am just following my heart to where I think it is, you are taking me. I miss you. I love you. I hope you are safe.
xoxo
P.S. If you have not bought Taylor’s new Album, RED, you need to. It is breathtakingly beautiful, as is everything she does. I have not stopped listening to it, since I bought it. I have informed Liam and Quinn, that is Taylor month at our house and that is all we are listening to;) Team Taylor FOREVER!
P.P.S. Taylor- Thank you. For everything.For letting him live on through you and all the beauty that you are surround with. For being such a wise free spirt who is truly grateful for every single minute of this thing we call life. For letting the boy with the most beautiful blue eyes, touch you to the core. You have helped this mama’s heart to heal. I love you so much.

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This just keeps getting more and more amazing. Thank you, Taylor for fighting the good fight with us.

Magic Medicine… Day 2 Round 6

I so needed to take a little break from the hospital today. Ronan is still refusing to get out of bed so we spent the morning playing; I tried my best to entertain him. Our favorite nurse, Sharon, came to do Ronan’s dressing change. He did pretty well with it but at one point I heard him yell out to her as she was taking the tape off, “I’m not a brave boy, I’m NOT A BRAVE BOY!” Neither of us had said anything about him being brave, but in his little 3-year-old memory, he hears us telling him all the time how brave he is and as he was hurting from the pain, he decided to let us know that he was not brave. We both told him he was, that he was the bravest boy in the world. UGH. I could cry right now just by telling this story. A 3-year-old should not what it is to be brave and to have people tell him he is brave all the time. Cancer is robbing Ronan of his childhood and I am fucking beyond pissed about it. His childhood, his innocence, his toddler years are being ruined. This will never be alright with me and I swear to god, I will do something about it. For all the Ronan’s, Jacks, Mia’s, Phoebe’s, Coleman’s, Victoria’s, Leo’s, Noah’s, Tripp’s, Ashley’s, Layla’s, and everyone else out there that is suffering and dying from this disease. I will not stop until people start paying attention to childhood cancer

Auntie Karen came around noon and I snuck out to go home. I wish I could say I was productive at home but I just tried to catch up on some sleep since I only slept a few hours last night. I tossed and turned during my nap today; even though I was exhausted I can’t escape being restless. I got up, showered and ran off to my hair appointment. It felt so nice to do something normal and to be out of the hospital. Sarah (the baby whisper) came and relieved Auntie Karen and sat with Ronan for about 5 hours. Thank you both today so much; I don’t know what I would do without you.

Ronan is tolerating Round 6 really well so far. I know the effects won’t hit him until late next week but for now, besides the fact that his spirits are down, he is doing well. He hasn’t had any nausea yet which is great. I can’t wait to bust him out of here hopefully on Saturday evening. We then get a few weeks off from the hospital before we start the Stem Cell Transplant. We will have more scans done in the next couple of weeks to give us an exact answer on where exactly Ronan still has cancer left in his little body. I will update you when I know exactly what the date is going to be. Ro is peacefully sleeping now; he looks so beautiful. I swear I could sit and stare at him all night which is really what I end up doing most of the nights that we are here. My eyes will never be able to soak up enough of his beauty.

I received some exciting news tonight via FB! My friend, Jessica, posted on my wall that she saw my comment in US Weekly re: Sloan Kettering and Jake Gyllenhaal’s visit. I called up New York Macy to see if she had the issue. She didn’t and sounded half asleep but still said she would drag her butt out of bed and into the freezing cold at 11:00 at night to buy the issue. I was laughing at the thought of that and told her no way, that I would call up Trish or Sarah. I ended up calling Sarah and she ran out to grab a copy so she could tell me what is said. Thank you, SARAH!! You are such an amazing friend:) Not only did US Weekly put Ronan’s website in the latest issue, but they gave me a whole little side blurb. I am practically jumping up and down on the hospital couch I am SO EXCITED! After hearing this news, I can’t stop smiling and it feels so good. It’s been a couple of days since my smile has come out to visit:) This so raises the bar for us in getting the word out about Ronan and changing the way the world views childhood cancer. A huge thank you to Jennifer at US Weekly for keeping her word and having something so sweet come out of this. Now, if I can just get Jake to become the voice for childhood cancer. We don’t really have a voice and as I said before, I feel like he could really be a good advocate for us. I’m going to try my hardest to make this happen; people have to start listening and paying attention to this issue. There are too many babies, kids, teenagers, suffering from cancer for it not to get more attention.

Woody and I were having a conversation the other day about unconditional love and what it means. We are at a point in our life where we have so many amazing people doing things for us. You know who you are, all of you who are helping us all while asking of nothing in return. Please know that not a day goes by that I don’t think of all of you. Trust me, it kills me to not be able to sit down and thank each and everyone of you individually. You are all amazing, even the people that we do not know and who are starting to call themselves “Ronan’s Fans.” I try my best to keep up on all the comments on here and I hope you all know how much it inspires me, that I am inspiring you. Ronan is so full of beauty that he has flooded our lives with it by touching so many of your hearts. I will forever be eternally thankful for each and every one of you.

Transplant is going to be hard and some of you have asked what you can do as far as sending things for Ro to play with; for us to please make a wish list of things that you can send to the hospital to keep our little guy entertained. Keeping him on lockdown for 20-60 days is going to tough. I’m trying to get creative and think of the best ways to keep him happy. Of course you know his love for Star Wars so I was thinking of putting up a bunch of Star Wars posters in his room and making it very Star Wars themed. I went on Amazon the other night and they have a couple of different Star Wars tents that I am thinking he would love. As far as toys go…. I know everything has to be new or very sanitized to go into his room. It has to be insanely sterile. iTunes gift cards are always great. Ronan has totally taken over my iPad and loves to download movies, books, games, etc… My iPad has been my saving grace over these past few months; it keeps him entertained for hours. He has watched Season 3 of Mickey Mouse Clubhouse for about 3 days straight now and loves that he can choose the episode himself. I love to watch him do this; I can tell it gives him a feeling of independence and pride.

I can’t believe this is the last round of Ronan’s Magic Medicine. Look how far our little guy has come! After all he has endured and all the pain he has suffered, his beauty never fades. I can’t wait until this round is done and I can do my “Ronan’s done with chemo happy dance!” The light at the end of the tunnel is getting closer!!!

G’nite, sweet dreams, to all of you angels out there.

xoxo