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.

20 months is not a kissing day

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Ronan. Today I woke up knowing it was the 9th. 20 months without you. I hate today so much. Your daddy woke up in the best mood ever. I know this is not true, but in my psychotic mind, it was. He was singing in the shower, Ronan. Singing?!?! Can you believe that one? I was beyond grumpy, hormonal and upset so of course I snapped at your daddy, “Can you please stop singing?! This is not a happy day!” He then made me feel like the biggest jackass ever by saying something really nice like he was just trying to wake himself up and he knows that today is an awful day. He tried to grab me for a kiss before work but I refused to give him one. I told him that today was not a kissing day. Remember the way you used to tell me that? In your grumpy little voice. “It’s not a kissing day, mama!” I always loved all my days with you, kissing or not, so very much.

I had a phone call this morning. I’ve had a lot of phone calls this week with different publishing houses. My agent, Nina, has done an amazing job of getting my proposal into the very best hands. Harper Collins! Random House! Simon & Shuster! St. Martin’s Press! Or as my Fairy Ro Mo said to me, “Nice little Indie Publishing Houses they are. Not! Wow!” I laughed out loud at her when I got that text message. I did not know if I was going to be able to pull it together for this phone call this morning as I was on the verge of tears. Luckily, it could not have went better. I think I cried at the beginning, listening to the woman on the other end of the phone tell me how sorry she was about you, but how moved she was with our story. I loved that she really seemed to get it and connect to you in a way that felt so right. She could not have been more complimentary which is always nice. I did what I always do in these phone calls which is let you guide me while I speak from the heart. I felt really good about it when it ended.

I didn’t have anything super crazy or dangerous to do today, on the 9th fuckwad of a fucking day so I did my best just to get through it. I miss my danger days where I used to take the 9th and do something totally dangerous and fun. Last year at this time, I was jumping out of an airplane. I mainly did it thinking I was going to die and I didn’t care. Once I hit the ground, I realized I didn’t really want to die, but instead I wanted to live my life to the fullest and forever do things that you will never get to do. Skydiving included. That was kind of my wake up call in life. I remember hitting the ground and thinking to myself, “If I can jump out of an airplane, I can do ANYTHING.” I still think this is true. I am so thankful for that experience at that time which totally woke my ass up. And I would do it again in a heartbeat, but something tells me that being almost 7 months pregnant, and skydiving do not go hand in hand.

So for today on my “danger day,” I totally did some rad mom danger things. I had to rent a Mini-Van due to being in a little fender bender a few weeks ago. Totally not my fault by the way. Shout out to the VP of your foundation, Ro, for running into me! I have to LOL at that one. It was a very minor accident and he felt so bad. But I have had the BEST time giving him shit about it. And now I get to rock a very dangerous mini van for the next couple of weeks which will be so very awesome! I also went to buy some new pants today because mine are no longer fitting me. I tried them on in the store and they were such a perfect fit that I of course had to wear them out. I spent all morning walking around with the tags on my butt and back thigh. Everyone in all of Scottsdale/Phoenix is now aware that I am a size 30 in jeans. Holla! If you ask me, that was a very dangerous day indeed.

I am wrapping up this post tonight with a raging headache and a wave of exhaustion hitting me that I have not felt in a while. I think the holidays, traveling, Teddy, you, grief, pregnancy, and going, going, going, non-stop is catching up with me. I might need an early bedtime tonight.

I miss you. I love you. I hope you are safe. Sweet dreams, baby doll. I love you to the moon and back.

xoxo

Blessings to you all! Best Ro-Lovies EVER!

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Happiest tears ever! You all just helped me meet my fundraising goal in about 15 minutes. I don’t even have words! Thank you so much! You all inspire me and give me so much strength. The next thing we fund will be for Dr. Giselle Sholler. I am so excited to give her this news as we are hoping to do something for her very soon. Please keep the donations coming in as there is no cap to what can be raised. $1000.00 dollars was the minimum.

Thank you all so much!

xoxo

http://www.firstgiving.com/fundraiser/rockandro/rockstar-run

I know what I want to name her…

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Ronan. Ireland Ronan Poppy Thompson is what I want to name your sister. I know I told you I’ve been having a hard time getting super attached to this pregnancy and I know the only reason for that is because of the fear that comes along with it. Not because I love her any less than I love you and your brothers. It’s the fear of death that now comes along with this pregnancy. I’ve never had this fear before, until losing you. Now I worry about it all the time. If I don’t feel your sister kick for a while, I’ll think to myself, “Oh my god, she died.” Good thing I didn’t get too attached, right? Wrong. I am not fooling anyone with this whole trying to protect myself thing. I have been attached since I found out at 5 weeks that she was the size of a Poppy seed. I already have a plan for when I am having her, and I will be induced before 40 weeks because I of course have to get her out before she dies of stillbirth, right? I was induced with Liam and Quinn at 36 1/2 weeks. I had you at 37 1/2 weeks. I know Dr. Schwartz is alright with the plans I am scheming up in my head.

Now that I am feeling your sister kick all of the time and I can feel how strong she is, I am starting to come around. It’s taken me a while, but I can finally decide on a name. Your daddy and I have had the name Ireland picked out since before Liam and Quinn were born. I have always loved it. I think it is so strong, unique, and beautiful. I have to have Poppy in there as well. I cannot give that name up for anything. It has come to mean too much to me and just saying it out loud, makes me smile. We will call her, “Poppy,” even though her first name is Ireland. And eventually, when she is old enough to decide, she can take it upon herself to figure out what she wants to be called in life, but to me, she will always be Poppy. That name will forever remind me that something could make me smile, through my darkest hours, even before your sweet little sister, set foot on this earth. That name will forever remind me of the happiness I can feel again, just by saying the name out loud. What I love even more is hearing other people referring to her, as Poppy.

“How is Poppy today?”

“Is Poppy kicking?”

“Who do you think Poppy will look like?”

Everybody is calling her by this name and I love it so very much. It makes me smile and feel a bit of happiness again. I am so very thankful for your little sister already. I know she is going to help us all so very much. She will bring us back some of the sunshine in our lives that we are all missing so very badly.

Today, we hopped in Papa Jim’s truck and headed up to the Mount St. Helens area to go sledding and play in the snow. This state never fails to leave me breathless. I still think it is one of the most beautiful places on the planet. We found a ton of snow and I watched and snapped pictures as your daddy, your brothers, and Papa Jim spent a couple of hours hiking up a hill to fly back down it on their sleds. I listened to their laughs and soaked up their happiness as much as I could. You would have loved today. If you would have been with us, it would have been absolutely perfect in every way. I took it easy due to my ever growing belly. No sledding for me today although I’m sure I would have been fine but better safe than sorry, right? This whole better safe than sorry thing is slowly killing me. How am I supposed to burn off my grief/anger by having to be so freaking safe all of the time? I hate that I cannot go for my long runs/hikes/ or all of those other things I used to do to help me get through this. I cannot wait for this Poppy girl to be born so I can get back to all of my night runs, etc… I am already planning on running the NYC Marathon in November if I can get in. No training required once again;)

Alright little man. I’m sleepy tonight. I sleep really well here and it’s a nice change from the insomnia I usually deal with back at home. I’m going to take advantage of my sleeping well while I can. I miss you. I love you. I hope you are safe. Sweet dreams, baby doll.

xoxo

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Yesterday, I put on some red lipstick and signed a contract.

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Ronan. I am feeling better than I was a few days ago. Today, I’m actually having a day where I don’t feel like dying. I have slept pretty well the past couple of nights so I am thinking that might be helping me out a little. Yesterday, I mostly just rested. As much as I hate the days where I have to take it easy… I know I don’t have a choice with this Poppy baby growing in my belly. My little hospital stint was enough to make me take it easy for a couple of days. It’s not just myself I have to worry about and take care of. I have this little life inside of me as well that I have to keep safe. So for her, I will slow down and listen to my body when I need to.

Guess what?! I can finally talk about one of the many things that I have been working on. I have kept this pretty hush hush mainly because I didn’t want to jinx myself, but now that things are getting started, I am excited to talk about my news. A few months ago, I got a little email that caught my eye. It was from someone named Alex and he wanted to know if I had been approached by anyone about writing a book. He is an author himself, and said he had read my blog and was so very moved by our story. He asked me to reach out to him if this was an idea I was willing to explore. I have been talking about this idea with a few people for a good 8 months. Mainly our Fairy RoMo. We had a long conversation about the whole book thing way back when we hijacked that mystery train to nowhere last winter when I was in NYC. It has been something that has been in the back of my mind for a very long time… but you know me and how I am about reaching out to ask things from people. I fucking hate it. I didn’t want to have to pitch our sell or story to anyone. I felt like the story of you and our love is too precious for me to go around selling. So I didn’t. The funny thing is, I had been working on a proposal to send our Fairy RoMo about 3 days before I was contacted by Alex. I sat and tried to write about us, and why this story deserves to be heard. I got about 2 paragraphs done. It wasn’t coming naturally to me so I just stopped because it wasn’t working. Then, the magical email from Alex appeared. The timing of his email was something that I felt was a little gift from you. There was no other way to explain it. I sent it to our Fairy RoMo. We googled him. He turned out to be really legit in the literary world. I traded emails back and fourth with Alex. We had a phone conversation. I told him I wanted to come out to New York to meet him, just to make sure I liked him if we were going to be working together. I grabbed Stacy to come with me on the trip because I knew I would need an outsiders opinion. We set up a dinner with Alex so we could meet him and get a feel for him. Dinner consisted of me, your Fairy RoMo, Stacy and Alex. We talked about this book and what it could look like. I knew within minutes of meeting Alex, that I really liked him. Stacy and Fairy RoMo felt the same way. We left the dinner excited about what was to come. The next month or so Alex and I worked on putting together a proposal for this book. After a few go’s, it finally got to the point where we felt it was good for others to have a look at. It is really hard to get a literary agent, but because Alex is already established in this world, he put me in contact with the people he knows. They talked to Alex and listened to our story and agreed to take me on as a client.

After going back and forth with them over the contract, finally, I signed it yesterday and I am the newest client of Dupree Miller & Associates. My agent’s name is Nena and from what I can tell, she is just the little spitfire we need on our side. She is very passionate about her job and our story and I know she is going to do a kick ass job at pitching our book. So yesterday, I had a moment of letting myself be proud. I am so hard on myself normally that I don’t allow the proud moments to come very often. Yesterday, I did. This is something I am so excited for and so very proud of. I know this book is going to be so very beautiful and it will only help in raising even more awareness. Now, if we can just get the millions and millions of dollars to create this Neuroblastoma center. I keep telling myself to be patient. But it is so very hard when all these kids are not getting the very best care that they deserve. It is so very hard when I am just having to sit back and watch them die, over and over again. Neuroblastoma is the deadliest of all the childhood cancers. I am not going to sit back and twiddle my thumbs and do nothing about that. I know this can change, if it just got the attention and funds that it so lacks.

What did your Sparkly say to me the other day? I think it went a little something like this.

“I think when you started Ronan’s Foundation, you thought it was something you were only going to do for a short amount of time. You do realize now, that this is the only thing you are going to do for the rest of your life, right? That this is what you were put here to do and you are going to do this until the day you die, right?”

I just looked at him and paused for a minute. “You might be right. I think I maybe had a moment very early on that I thought I would only do this for a short amount of time. I now realize that this is the only thing I am passionate about in life. I wouldn’t still be here pouring all of my blood, sweat and tears into this if I just thought it was going to be a moment in time. This is my entire life now, for the rest of my life. I’m not stopping until I’m dead. Or until cancer is dead, whichever comes first.”

So, back to the book. My hopes are to have it come out in September 2013, just in time for childhood cancer awareness month. But all that depends on a lot of things. I am just so very excited to have this opportunity, even though it is a story I wish I didn’t have to tell. I would give anything to just have you here and not to have a fucking book written about you because you died. But I know this book is going to help a lot of people and it is going to do a lot of good in the world. I promise to tell your story the way it deserves to be told. I promise to make you proud. Thank you, Ro baby, for believing in me and making me continue to write. You fuel my fire for everything I do, say and feel. Thank you for giving me the strength and the courage to be honest about everything I am going through and to not be ashamed of any of it no matter what others may say. Without this blog, none of the amazing things that have come my way, would be happening. I am proud of myself for not being afraid to tell it like it is. That all comes from you because I know the way you lived your life; so very wild and free. You are my inspiration for everything. I love you.

Today, I took Quinn to breakfast. He opened up the little box that I keep in my purse with some of your ashes in it. He asked why we weren’t there when they “burned you.”I answered his question as best I could while vowing to fix all of this. No sibling in the world should have to sit with their mom, before breakfast, touching their baby brothers ashes. Fuck you cancer. You fucked with the wrong mama.

I miss you. I love you. I hope you are safe. I love you to the moon and back.

xoxo

The Death of a Domestic Goddess

tumblr_medw43k3Ar1qzdeblo1_500Ronan. I don’t sleep well. I know this is not healthy, not good for me or Poppy, but every single night this is how it goes. I fall asleep easily enough for a few hours. Then like clockwork, I am wide awake and cannot fall back asleep. How do you sleep peacefully when you have a dead child? Does anyone? Your daddy seems to. Maybe it’s because I’m your mama, that I don’t. Because my primal maternal instinct just takes over. I feel like a caged animal, searching for you. I wonder if this is how animals at a zoo feel that have been separated from their young. I’ll bet it is pretty similar.

Today, I did a lot of normal things that I don’t really enjoy anymore. Much of them consisted of being domestic. I have a hard time with that in this new life of mine. I did the whole Costco trip which I never do anymore because it give me so much anxiety. Today, I did it with a friend, so it wasn’t so bad. I came home, unloaded groceries, got dinner ready for tonight and finished up all the laundry that needed to be done. The laundry that I used to love to do, but now I loath, due to not getting to wash all of your clothes, too. I picked up your brothers from school. We came home, I made them a snack, we did their homework, etc… I was feeling pretty beat down/tired like I seem to be feeling a lot these days. Grief and pregnancy are not my cup of tea. I had a hard time being pregnant back in my life before knowing what it was like to have a dead child as well as being pregnant, too. Being pregnant with this Poppy girl just seems to make my pain for missing you, much more intense. I am officially a little over halfway in this pregnancy. I wish I could say I felt great, but I don’t. I feel miserable. Tonight, as I was taking a bath I thought to myself, “I wonder if I’ll survive being pregnant. I think I might die, from hurting so much.” I had a flash of death, like I often do. But then I thought of your brothers of course and that always seems to put me back on track. I know one thing, for sure. I cannot do this again. I cannot have another child, after this. It has all been too painful, and too much. I just need these next 4 months to fly by fast, please. I know I will be alright once Poppy is here, safe and sound. I cannot wait to have a little insomnia buddy to hang out with me;)

I think a lot of my problem is my mind is constantly wound up. I have such a huge to do list in front of me, that my mind is constantly thinking of things to do or that need to be done. The Neuroblastoma Center being at the top of it. Barb from NPR asked me if I thought this center was a reality. I told her without a doubt, it is. She asked me how I was going to get it done. My reply to her was, “I’m not exactly sure. All I know is I have someone very powerful behind me on this, that being Ronan, and I’m just going to follow his lead.” As long as I trust in you, I know this dream will become a reality. Do you know how much I believe in your foundation and what we are doing, Ronan? So much so, that when I was working through the details of where the money was going to go from the song Taylor wrote for you, I made the choice to have everything that came our way from iTunes, go to your foundation. I know I could have used it for our family, for your brothers’ college savings account or Poppy’s new room… but I didn’t. Because I believe that helping to save these kids’ lives, by giving them the best chance possible, is the most important thing in the world. Everything else can wait. These kids cannot and I will not stop trying to fix this world, until it gets drastically better. I know this center will do this. I know what needs to be done, to make these lives a little better for these kids so they don’t feel like they are just another number, the way we often did. I know this is going to take time. I am trying to be as patient as I can. I realize I am dealing with a lot, on top of trying to get this center figured out. Sometimes, I’m not sure how I am doing everything I am doing. But then I remember, I am living without you every single day. There is nothing harder than that.

We are going to see your Nana and Papa for Christmas. That cannot come soon enough. It has been unseasonably hot here and it’s starting to make me really hostile. I need a break from the sun. I need to get to Washington, where I feel like I can actually breathe for a change. I need the rain, the gloom, and the fresh air. I need the safe house I grew up in, with the best parents ever. I need to watch the way your brothers are so happy in the presence of your Nana and Papa and vise versa. I need the love that fills that house and where I feel the most loved. I am counting down the days, already. I know we all are.

I am going to try to go back to sleep now. I have much to do tomorrow and not getting enough sleep is not going to help me to be productive. I miss you. I love you. I hope you are safe. Sweet dreams, baby doll.

xoxo

The election is over! Now, we can focus on turning the White House Gold for September and save some kids!

Ronan. I am having a hard time breathing. I can’t tell if it’s grief that is trying to suffocate me or Poppy. Either way it is making this life without you, harder than normal. I didn’t know that was possible. I spent the weekend at home, doing normal things with your daddy and brothers. The kinds of things we would have been doing, if you were still here. The things I have the hardest time doing now in life. Those simple easy things in life that I used to love so much but now I feel as doing them is harder than running a marathon. Without training. Liam was still a little under the weather. I tended to him and we went to bed pretty early on Saturday. It’s all I can do to make it to 9:00 p.m. without passing out. This growing a baby business is a lot of work. One that I am not a huge fan of. I never have been. The outcome is of course so worth it, but I have never been one of those women who enjoys pregnancy. It feels like a prison. I am trying to stay positive, but it’s hard to all of a sudden feel like you are just stuck in quicksand and there is nothing you can do to get out of it. Before I was pregnant, I had so many physical outlets that kept me sane. I could blow off steam so well with an easy breezy 8 mile run. Now I am panting at climbing a flight of stairs. So mentally and physically I am having a hard time getting out all of my grief in the ways in which I would before which may be another reason for my feeling of constant suffocation. I’ve been throwing myself into working on things for your foundation. That is saving my sanity a little bit I suppose. It is saving the shred of sanity that I have left.

Last night we had tickets to see my boyfriend, Eddie Vedder in concert. One of our little lovies, somehow got 6 front row seats where I got to sit about 10 feet away from Eddie as he gazed into my eyes and sang to me the entire night. That might be exaggerating a little bit but an over active imagination is healthy. He played our favorites. I was not the only one with tears streaming down my face as he sang our song, “Just Breathe.” I think everyone that was there with us, had them streaming down their cheeks too. I tried to fight it, but eventually the lump in my throat became too big and the tears came next. Buckets of them. I wiped them away and pictured you running up on the stage as Eddie sang his song, only the way he can. One that makes you get completely lost in another world. I, as always, was lost in the little world of yours. It’s my favorite place to be. I know Eddie had some Ronan ESP going on as next to last song was the one and only Neil Young’s, “Keep on Rocking in the Free World.” You’re telling me that was a coincidence? I know it was not. It was you working your magic in the ways that you always do. My entire body ached for you and I had flashbacks to the way you used to dance to that song. Thanks, Eddie V for playing it just for Ro last night. I know you did that for him. I could not have thought of a better way to end the night, then with that.

Today, I woke up bright and early. For going to bed so late last night, I woke up before the sun came up. I tossed and turned for about an hour before finally getting up. I had nothing of real importance to do today, but I was restless anyway. I ran some errands and went to the office. I worked through much of the afternoon on some foundation things and had about a half an hour phone interview. This one was hard for some reason. I forget what question it was exactly that I was trying to answer, but I know I had to stop myself and apologize for the sobbing that was taking place on my end of the phone. I think I remember telling the lady on the other end of the phone something about my last words to you and how I told you how sorry I was over and over again. She asked me what I was sorry about. I told her how I promised you I would save you and get you better and the fact that I didn’t or couldn’t will make me sorry for  the rest of my life. She asked if I thought you knew that you were dying. I think about that question a lot. I told her that I did not think that you did. How some of your last words to me were, “I don’t want anymore sleepy medicine.” I told her how you had to be put under anesthesia a lot and how I think you thought you were just going to sleep, but you would wake up again. I think about this so much in my head, all the time. I wonder if I should have told you that you were going to sleep forever. I didn’t. I don’t know if I should have or not. I’m so sorry you are sleeping forever and won’t ever wake up. I will forever have post traumatic stress over this. No mama should have to kiss her babies lips one last time and to be expected to live a life without kissing them again. Being a parent to a dead child is the hardest job in the world. Much harder than being the parent to kids who are alive and well. Being the parent to a dead child is the hardest kind of parent to be. I don’t think anybody in the outside world realizes this. It’s a truth I never thought I would know. It’s a truth that I will forever wish I didn’t know.

I had a board meeting last night at our new office. All of the girls were so excited. It was so nice to be able to have a space to go, that was not our own house. Our board meeting was long. A good 4 hours last night but we got a lot done as we always do. I woke up this morning with a big to do list. I got a lot of it done but by noon I knew I had reached my limit for the day. The little sleep I got last night combined with a raging headache led me to driving home and crawling in bed for a few hours. I took about a half an hour power nap but then had to get up to get some things done. Your daddy picked up your brothers from school and we all went out to grab a bite to eat as the cooking was just not happening tonight. I find myself sitting back and listening to your daddy a lot and the way he talks to your brothers and explains so much about the world to them. Once again, that bittersweet word will be used again because it is so bittersweet to hear the things they are learning and knowing you should be here, learning them, too. Tonight at dinner your daddy talked about everything from Shakespeare to the election. I watched them soak it all up like little sponges. They are so lucky to have a daddy like yours. Tonight, sitting at one of our favorite restaurants, I felt pretty lucky. Not every child grows up with a daddy like yours. So I felt lucky for that. Your brothers are amazing little boys and I know a big part of this is due to the strong male figure they have in their life. They are happy, loved, and have been through the worst, only to watch as we have survived it all. I feel like a bit of their self-confidence and security is coming back. I know this could have shaped them either direction. I am thankful that our situation has only seemed to make them stronger and have a love for our family  that is so strong because they understand how precious it is. Such hard lessons for young boys but I know this will make them stronger men. Of course you know I would rather have you here and not have to have them “learn,” any of this. I am just doing my best to be grateful for the things I have that are tangible to me, like your brothers brave little hearts.

I gotta go little man. Lots to do, always for you. I miss you. I love you. I hope you are safe. Sweet dreams.

xoxo

P.S. I am not going to get into politics on here but I am so glad the election is over. I took Poppy to vote yesterday and we as a family had such fun last night watching the polls. It was a good night. I am so glad we can now focus on turning that White House Gold for September. I have faith that our President will do the right thing and make this happen. There are too many babes dying. A change has to come. I am thankful for President Obama and the Creating Hope Act. It’s time to take this to the next level and with all of you on our side, I know this can happen! Love you all, so much!

Katie Couric Tomorrow!

 

 

I hope you all can watch. The show that Woody and I taped, will air tomorrow. Also, be sure to tune in on Friday as well for the amazingness of Taylor! Thank you!

xxoo

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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“From what I can see here, it looks like you are having a baby…”

Ronan. Today, was not a day I expected at all. I had an early appointment at The Fetal&Women’s Center of Arizona. I had to take your brothers because the appointment was so early. Mandy Bee offered to come and sit with them while I went back for my appointment. As we were sitting there waiting, Mandy goes, “You know you can find out the sex of the baby here, right?” I told her I wasn’t aware of that as I thought I had to wait until I saw my OBGYN in a couple more weeks. She told me how she found out at 12 weeks here with both of her boys. I am further along than that, but not much. As soon as my name was called, I got up and asked if it was o.k. if everybody came back in the room with me. The sweet lady told me it was. Your brothers sat playing on their iPads and I was on the table, getting my little belly lubed up. Pretty soon, Poppy was on the big screen. My heart started pounding. So loudly I was sure that everyone in the room was going to hear it. The lady started measuring some things. Mandy chirped up, “Can you tell the sex of the baby today?” The technician told her she indeed could. She asked me if I would like to know. I said, “Sure!” Of course you know I am so impatient when it comes to all things being pregnant. She put the little wand over my belly. I felt myself panic. Oh god. Ronan really wanted a girl. Please. I really wanted a girl. For as much as I can say all I care about is a healthy baby, the truth is, a little girl would mean so much mainly for the fact that you wanted a baby sister. The picture came on the screen. I heard her say it was a boy, before she said anything at all. “From what I can see here, it looks like you are having a baby girl.” “Really? Are you sure?” The technician told me she was about 90% sure. I could not believe my ears. I started bawling, tears falling everywhere. Mandy came over and grabbed my head and kissed the top of it. I buried my head in her shoulder trying to control myself. It was no use. Mascara and snot everywhere. I don’t think I have stopped crying, the entire day. Quinn was over the moon. Liam chirped up that there was a 10% chance that is was not a girl. So typical. So funny. I tried to call your daddy. He didn’t answer. I had Quinn call your Nana. She thought we were all lying to her. No way could it really be a girl.

I finally got your daddy on the phone. As much as I hated to tell him this on the phone because he is in Vegas, there was NO way I couldn’t tell him. “Guess what?” I said, tears still falling everywhere. Your daddy never knows what he’s going to get with me. It could have been everything from “I’m leaving for Tibet to I bought a dog.” I think he was really relieved when he heard me say, “We’re having a baby girl.” He was so happy. He said he knew it. I think deep down, I knew it too, but the confirmation was nice today. I spent the rest of the morning calling and texting our closest peeps. Fernanda. Stacy. Becca. Macy. Liz. Dr. Jo. Melissa. Gay. Tricia. Danielle. Marisa. Carolyn. Charisma. Kass. Rach. Robyn. Rissy Girl. Katie. Meg. Our Fairy RoMo. It is her birthday today. Can you believe that shit?! I found out on her birthday, which was not planned at all! This appointment just happened to fall on her birthday! Talk about another huge sign! There was one person I had not told yet. Your Sparkly. He is the last person I told today. This was not something I was going to tell him over the phone. I had to tell him I was pregnant with this baby, over the phone. I NEVER get to make him smile with happy news, because all the news I sit and share with him is usually so fucking sad or me venting. I sent him a text. “Where are you?” He responded with “In a meeting. Are you o.k.?” I said I was o.k. That I needed to see him today. “I’ll see you in 20 minutes. Come to my office.” I met him there. I was in the middle of sending an email when he came down to get me. I didn’t see him walk up, I only heard him barking some smart ass remark to me, like he always does. He sat down. I told him to hang on, that if I didn’t send this email, I would forget to do it.” He sat. I kind of crawled over to him and gave him a big hug. He laughed at that. “What’s going on? You look pretty today. You know what the baby is, don’t you.” I smiled. “Yup. It’s a baby girl.” I watched his eyes light up in a way that his often do, when he is truly happy. I was so glad I got to tell him my news in person. “I knew you were having a baby girl. I told you that. Ahhhh! You with a baby girl. Finally, someone you can do all those girly things with that you love doing. You two are going to be something else.” I laughed and talked about you a little bit. How much you wanted a baby sister. I am still trying to absorb this all. I cannot believe all the little blessings you are putting in our lives. I left your Sparkly and as I got in the car, I sent him a quick text. “You are going to make the best grand poppy ever. She is so lucky to have you.” He responded back with a simple, “I will.” I said, “I know. Thank you.”

The rest of my day, played out in a way that I don’t think I can take much more. I got a text from Carolyn saying to call her that she had some news. I, of course went to, “Oh fuck. It’s got to be something bad, because too many good things are happening lately.” I texted her back, “Is it good news or bad news?” I was expecting the bad from my friend and foundation president. She responded with, “It might just be the BEST news ever.” I called her. I did not think anything else could happen today, that would leave me speechless. I was wrong. Tears all over. As of now, I can’t talk about our news. All I can say is I cannot believe all of this. I am overwhelmed. I am floored. I cannot believe how truly hard you are working, Ronan. I have never believed in something more in my life, then you. You are making so many amazing things happen. I ended the day with Stacy at Fernanda’s house. I told her the Carolyn news. She could not believe it. A baby girl and now this?! She looked at me and said, “How are you not so overwhelmed?! Aye! Maya! You know this is all Ronan. You know that you could have been in bed for the past year, and we would have all been o.k. with that. Because that would have been totally acceptable! But you chose not to do that, and look at everything is happening.!” I started to cry. I said I knew. I knew but I also knew from day one, that I couldn’t do that. I have to make you proud, Ronan. Lying in bed for the past year, would not have made you proud. But I appreciated Fernanda saying that. I know she meant it because she is such a true friend like that. All of my friends are. I am so lucky to have them all. They stuck by me during my darkest of days. Even on my darkest of days, when nobody knew what to do with me, they stood by me. They didn’t judge me. They may have gently slapped me here and there, but they didn’t talk ill or abandon me or whisper behind my back. This is why they are still in my life. Because they never gave up on the you and me part of this. They just let me be, trusting in me to come around when I needed to come around. For that, I will forever be so thankful. For that, they will forever be my sisters. This baby girl, is going to have so many beautiful aunties. With you watching over her, with a daddy like yours, and your big brothers, too. This baby girl is going to be the most loved little baby girl in the world. Thank you, Ronan. I so badly wish you were here. More than anything. She will be a part of you and I cannot wait to meet her. Please make her extra extra spicy.

Today, was a really happy day full of never-ending tears. Tears of both happiness and sadness. Today, my tears were more happy. I’m soaking that up, because it doesn’t happen often. I miss you so much. I love you so much. I hope you are safe. Please keep this baby girl safe for me, Ronan. I know you will.

xoxo

Happiest Birthday ever to our Fairy RoMo. You are pure magic and are totally going to make the best fucking godmother ever. Poppy is so lucky. We all are. I love you.

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