This book on the brain…

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Just wanted to check in. I’ve been writing, just not on this blog. I’ll update soon but between foundation things, Poppy things, the twins being home for summer, traveling, and working on this book, things have been a little crazy.

I miss you all. Missing my Ro most of all, always. I’m working hard to make my little man proud. Here are some new pics of Poppy. She is still the sweetest little thing and we are enjoying her so much. Hope you all are having a great summer! Love you much!

xx

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A Happy Birthday to your most amazing brothers.

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Ronan. Our little, Rachel went back to NYC this morning and I hated to see her go. We had the best time with her here and she is another one of those big reasons that I am so thankful for this blog. Without it, I may have never known this amazing soul who I’m sure was my little sister in a past life or something. Somehow or somewhere, we have crossed paths before. There is just no other way to explain the bond and connection we have. Never in my life have I met a more centered and beautiful 21-year-old in my life. Rachel is everything I hope Poppy grows up to be. She is brilliant beyond measures, mature, wise, compassionate, polite, sassy, hard working, loving, funny, strong, independent, adventurous, and truly knows how to stand her ground in this crazy world. I can’t wait to watch all she does in this life as I know she is going to change the world.

After I got home from taking her to the airport this morning I walked into your brothers room to find your daddy, Liam, Quinn, and Poppy. Your daddy goes, “Did you get Rachel off o.k?” I told him I did. He then goes, “That’s sad.” I said, “What’s sad?” He said, “I know you’re sad that she had to go. I wish she could have stayed longer, too. She was a great house guest.” I just smiled and said that it was o.k. Although in my mind I was wishing she could move in and stay with us forever. Your bed looked so much more happy with her in it. I’ll never forget the first time I met Rachel and I don’t really even remember how it came about except for she had been reading my blog and knew I was coming to New York City, alone to take a little time for myself. Somehow it turned into, “Want to meet up?” And of course I said yes because I just had a feeling about this girl. I am so glad I took a leap of faith and a chance and opened up my heart when it was so broken. My little, has helped me in ways she will never know. It’s people like Rachel that make living this life a little easier because she brings such beauty to it. Even though she may have tried to hide Poppy in her purse and take her to New York with her;) Don’t worry, little. We’ll come visit you soon. We are missing you so much already.

The 9th came and went. It was an o.k. day. We didn’t do anything dangerous. Instead Rach helped me get organized around the house. We cleaned out drawers, organized closets and dressers, we loved on Poppy and your brothers. We met up with Fernanda and Stacy for dinner where I got to sit and talk with my friends while Poppy slept away in their arms. It was a good way to spend the 9th. For once, I didn’t have the desire to jump out of an airplane without a parachute. Your brothers birthday was the next day. 10 years old, Ronan. I don’t even know how that happened. I woke up and made them a big breakfast before basketball camp. We opened up gifts and they were so excited, happy, and thankful. After camp we spent the rest of the day playing with Fernanda and her kids for the majority of the day. I broke down about halfway through the day as I had done all I could do. I tried my best to be the strong and happy mom for most of the day but there came a point when I couldn’t stomach the fact that you were not here with us to celebrate and the tears just started pouring. There was no controlling them so I just let them fall. I was back in Fernanda’s bedroom with one of her boys who is so in love with Poppy that he just wanted to hold her all day long. I was sitting quietly with him and we were whispering back and forth to each other about Poppy. There was something about seeing him holding her and the way he was looking at her that reminded me so much of you. I think it was the look in his eyes as they were filled with so much love, happiness, and peace. It’s the way I know you would have stared at her, too. Brando kills me anyway as I totally have such a soft spot for that kid. He is only a couple of years older than you. Right after you died, I remember being at Fernanda’s house and I was back in the boys’ room. Brando just looked at me and said, “I’m sorry about Ronan.” I was speechless as I think he was only about 6 when this happened and I remember thinking to myself, “I don’t care how little this boy is, he gets it.” I’ll never forget that moment with him and how much it meant to me. I’m a sucker for all of her kids, but Brando always seems to tug at my heart just a little more. While I was crying on the bed with Brando and Poppy, Brando looked at me and said, “Are you o.k.?” I just nodded my head that I was, even though I really was not. I tried to stop the tears, but it didn’t work and Rach and Fernanda came into the room to find me silently sobbing. My tears lasted a majority of the day. I just wanted  you with us, running about the way you should have been with your big brothers on their 10th birthday.

We ended the night with messy, messy, ice cream cake, singing Happy Birthday and lighting off fireworks that we acted like weren’t supposed to be lit off. As we were jumping and dancing about I heard our little Rachel yell to Quinn, “Rules were meant to be broken, Quinny!” I laughed out loud. Indeed they are, little which is another reason I love you so much. Ronan, you would have loved the boys’ birthday so much. I hope you were there watching us and cracking up at the things we did and you could see even through my tears, I can smile and laugh, too. The night ended by tucking our little in as I sat with her and talked about life, love, loss, and the people we choose to surround ourselves with. I told her how I’ve learned some lessons along the way about the people that have floated in and out of my life. How you, Ronan, are the root of all things good, beautiful, and pure and as long as I remember that I think I will be able to continue to do things that will make you proud. I’m not here to deal with drama. I’m not here to deal with BS. I’m going to live this life the way I want to live it, not the way other people think I should. At one point I was talking to Rach about Stacy and I was telling her how we met, how long we’ve known each other, how we lost touch after our husbands graduated law school together and how we had made plans to meet up after a few years had passed and how we were supposed to go to dinner on the night you were diagnosed. I tole Rach from that moment on, how Stace swooped in and her and Fernanda took charge of everything. How we may have had our bumps along the way, but at the end of the day I always know Stacy never forgets why it is she is here, doing what she is doing. She never forgets this is all for you and because of you. Screw me. I’ll say screw me all day long as I’m not the one who matters in all of this. It’s you. I get told a lot how strong I am, how inspirational, etc… You know what I say to all of that? I’m not any of those things, but you are Ronan. I am just simply here, trying to make you proud by doing the things I know you would want done. You were the strong one. You were the brave one. I was just simply lucky enough to be your mom.

After my pow wow with Rachel, I went to kiss your brothers good night. Quinn wanted to snuggle Poppy so we got into bed with him. We all said our goodnights. I told your brothers how lucky I am to have them and how I hope they know how much I love them and am proud of them. This is what Quinn said. “Goodnight mom, Goodnight Liam, Goodnight Poppy, Goodnight Ro. I love you. I wish you were here.”

Always, Ronan. We always wish you were here.

I love you, baby doll. I miss you. I love you. I hope you are safe.

xoxo

P.S. Thank you to all of you who reached out to me about the cable for The Ronald McDonald House. We’ve got some amazing people helping us out and I am crossing my fingers that something can be done. I know it may seem like such a silly thing to some because we are lucky enough to have the basic things in this world like clean water, food, etc… But trust me, when your child is neutropenic and cannot do a thing except watch Mickey Mouse Club House and the parents are so beat down from all they are going through, a little thing like that can really help one get through the day. Again, thank you all. You truly are angels on this earth.

 

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I love your Poppy sister to the moon and back.

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Ronan. Sometimes I just sit here at this computer screen, wondering what to write because the only words I can think of are… I just miss you so much. That’s it. I just miss you so much plays over and over in my head like a broken record that I will never turn off. Tonight, I guess I have a little story for you that is mostly about your sister. I’m not going to lie, Ronan. I was a little unsure of how things would be once she got her. All of my usual doubts filled my head. The thousands of questions. Will I be able to love her enough? Will she love me as much as Ronan did? Can I still be a good mom? Am I worthy of loving another child? What if we don’t connect, bond, etc… What if I am still so numb, that I feel nothing? Am I betraying Ronan? Would he be mad or sad or jealous? Am I hurting his feelings by having another baby and loving it? The things I worried about in my head seemed to be never-ending and oh so dramatic, but they were my real life thoughts about all of this.

Then that day came that your sister was placed in my arms. I can honestly tell you that I was so overcome with so many different feelings, that it was hard for me to feel a thing. So I just stared at her while she stared at me. The first thing I whispered in her ear was something like, “Ronan loves you.” Then my mommy mode adrenaline rush of I can do it all kicked in. So it was a constant stream of auto pilot everything. Feed baby. Change baby. Sleep baby. Tend to mama just pushed out a baby war wounds. Eat mama. Sleep mama. Drink mama. Shower mama. While taking care of other kids, laundry, people wanting to meet her, phone calls, emails, a few blog posts, foundation things, don’t forget to grieve mama, the questions of “how are you really doing from my friends and family seemed constant. But with all that adrenaline rushing, I was able to keep a safe distance away from really feeling that deep connection with your Poppy sister. Oh, I knew I loved her, but I had been keeping myself so busy as if to not let myself fall in over my head. My guard was still up I guess you could say. My mind was still trying to go to that place of don’t get too attached, in case something happens. So, I guess you could say at first, I was dating Poppy in a way. Testing her out to see how things were going to go.

I’ve spent the past few weeks, slowing everything down. I’ve spent the past few weeks, letting myself and my relationship with Poppy unfold a little more. We spend much of our days, sitting quietly. Her constant need to be fed has helped us to bond. We do everything together. I can’t even put her down in her crib to sleep, so she has been sleeping in our bed. For as slowly as I’ve watch things unfold, I can’t stand the thought of being separated from her. I talk to her a lot, even when she is sleeping. My favorite part of the day is when I lay her down to be changed and she just stares at the big picture we have of you in her room and while she is staring, she smiles at it from ear to ear. She’s been doing this from really early on, when babies aren’t supposed to smile at all. She started this at about 2 weeks when babies are supposed to be blind as a bat. I watch her and say things like, “Is Ronan telling you secrets again?” I scoop her back up, rock her and then sometimes look down at her and think to myself, “Are you really Ronan? Because if you are not, I had no idea I would be able to feel this way again. This close and this strongly connected to a new baby after losing my everything. Either you are Ronan or Ronan sent you because he could not take how sad I was anymore. He sent you to try to help fix my heart and soul. He could not have picked a more perfect baby girl to heal my heart.”

The past few days, I’ve felt nothing but this euphoric happiness. Happiness that has only come because of your sister. I see it through everybody, but it’s through myself that I can actually feel it. I am not dating Poppy anymore. We are full on in a crazy, love affair, forever will be married, marriage that I am over the moon about. I without a doubt know, none of us could have really survived this life and lived this life in the way we should be living it, if it were not for your sister being born. Everything has shifted in such a good way. The energy in our house has changed. I’m getting more of those beautiful moments in life that I often talk about from the simplest things. Beautiful moments seem to be everywhere I look, Ronan. I am no longer fighting them or scared of them. I feel so lucky and blessed and this is all due to this gift you have given us which is her.

Dr. Sholler has been in town and you know I am always crazy happy when she is here. Your daddy, Poppy and I picked her up from the airport on Sunday. Before she got in our car, she sent me a text. “Can we hike?!” I laughed out loud. I said to your daddy, “Giselle wants me to take her inferno hiking. She is such a badass.” I told her of course we could. Your daddy said to me, “Are you sure about that? Did you tell her how you almost killed your intern, inferno hiking?” I told him to hush, that she didn’t need to know that. I did warn Dr. Sholler that it was going to be hot, but she was totally game. I was feeding Poppy in the backseat of the car when she arrived. Your daddy parked and went to walk to get her. As soon as she got in the front seat, she scooped up your sister into her arms so she could hold and love on her. I was blown away. Watching the two of them meet was something that will stay in my mind forever. They sat and stared at each other for a long time and Dr. Sholler was such a natural with your sister in her arms. That’s what makes her so different from other doctors, Ronan. She doesn’t have that compassionate chip missing, for being such a bloody freaking genius that a lot of people do. She doesn’t have a fucking ego or agenda. She cares so much not only about her patients, but the family’s as well. Even the one’s with the dead kids. That is so beyond rare. She is such an anomaly in this world. She is my hero and I am so proud to be a part of the things she is doing and will be doing in the future for these kids fighting Neuroblastoma. I will forever be sorry that we didn’t find her sooner.

I took Dr. Sholler hiking. We talked a lot about cancer things, but other things as well. I asked her the million dollar question which was, “What do I need to do to make sure Poppy doesn’t have cancer?” I said, “Do I do nothing and just trust in the Universe that completely screwed me over? Do I start having her urine tested? Do I get her blood tested? Scanned? Please, just tell me.” We talked about how a urine test after 2 would be a non invasive way to just make sure everything is o.k., but ultimately Dr. Sholler wants me to just trust in you. She told me that your sister is fine and is going to be fine. I tried my best to listen and trust in that, but it’s really hard to do so when your entire world has been shattered. Fast forward to today to prove my point on that.

I fed Poppy this morning. I burped her after. I set her in her bouncy so I could pack Liam and Quinn’s lunches. I heard Poppy coughing a bit so I picked her up. Bright yellow vomit/spit up goes flying all over my shirt, not once, not twice, but three times. I go into show your daddy. I see Poppy looking a little pale. In my mind I’m freaking out and everything in me is screaming, “SHE HAS CANCER!” Your daddy makes light of it. I do not. I text our pediatrician. She texts me right back and says it’s probably curdled milk, but if I want she will check her out and feel her tummy. I of course, ask her to make me an appointment to bring her in. So, I sit and wait at home for our appointment. My mind goes to all of those awful places while the tears pour down my cheeks. This is my life now. This will always be my life now. I’ll never escape this world where a little thing is just a little thing. A little thing to me, will always mean cancer. I know I have to learn to let some things go, but today, this lesson was lost on me. Today, it was all I could do not to run down to the hospital demanding to have her scanned. Dr. Campbell calmed me down and told me everything it could be, none of it being cancer. She pushed down on her tummy and told me it was soft. She told me your sister is fine. Your sister is fine, Ronan but I will never be fine again. Not when it comes to normal things like yellow spit up, tummy aches, aching muscles, headaches… I will always think the worst. I thanked Dr. Campbell and she told me she would do tummy checks on Poppy everyday if I wanted her to. That she would come by our house even and to text her whenever I was feeling uneasy about something. I smiled and thanked her again. Once again, I am so lucky to have such an amazing doctor who truly cares, taking care of our family.

We are home. I am exhausted from not sleeping well last night. I guess I was also a bit wired from the amazing night I had with Dr. Sholler and some great peeps from T-Gen. I took Poppy with me. She goes everywhere with me and didn’t make a peep. Best baby ever. So many wonderful things are in the works and I am so honored to be able to be surrounded by such amazing people, who share the same dreams and visions as I do. Together, we are going to do extraordinary things.

I miss you. I love you. I hope you are safe.

xoxo

A death day and an almost birthday

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Ronan. We made it through your death day the best we could. I didn’t sleep much the night before and I even had my alarm set to go off during the time that you passed away, just so I could be awake. I didn’t need the alarm because your Poppy sister woke me up almost exactly at the time you left this earth; because she wanted to eat. Of course she did, right Ro? Poppy knows what’s up. I did a lot of my crying the day before you passed away, a lot of it the night before, and still a lot of it on the awful day itself. I picked up the phone on your death day for the one person that promised to call and the one person that I would pick up for. Your Sparkly. I started crying as soon as I saw his name pop up on my screen. I let him do what he does best which is say a few things to help me get through the day. I didn’t say much, just quietly cried instead and told him I loved him. Not many words were needed by either of us.

We spent a quiet day in Sedona together by the river and in the woods. We had a little lunch and an early dinner. At one point, your Daddy and Liam ran into the store while Quinn, Poppy and I waited in the car. Quinn was changing the music in my car and a mixed C.D. that I had made, came on. The first song being, “Ronan.” He seemed so excited about it. “Oh! I haven’t heard this song in forever!” I just smiled at him and told myself to let it play while I sat in the back seat next to Poppy. It only took about 5 seconds of listening to that sweet voice and those oh so powerful lyrics before I lost it completely. Full on could not breathe, sobbing, as I wiped tear after tear away. I am still amazed at how Taylor did the most beautiful job at capturing my grief in such a way that it leaves me breathless every time I listen to your song. I love it so much, but it is so hard for me to get through. Quinn just watched as I cried, bent his head down, and held my hand. I don’t know if I’ll ever be able to get through that song without crying. I could see every single word play out in my head like a real life movie except it’s not a movie, it’s my life and it never gets any easier.

Once we were back to our hotel and the sun was setting, we all headed down to the creek with our 6 purple balloons and a Sharpie pen. We all took turns writing on our balloons. I’m sure it was quite the sight the 5 of us, all huddled together, writing our thoughts to you. At first Quinn only wrote a couple of things. It went a little something like this:

“I miss you, Ronan. I love you to the moon and back.”

But then he said, “Wait! I need to write more!” It ended up being a novel for as much of a novel that would fit on one purple balloon. He said some other things that I tried to read out loud, but I started choking on my tears as I read his words.

“I wish you were here. I was really looking forward to watching you grow up and play baseball and basketball. I miss you.”

Liam’s words went a little something like this:

“Ro Ro. I miss you. I am so proud of you. You are so strong. I love you.”

Your daddy wrote his words, I wrote mine, and Poppy wrote hers;). We went down to where there was a clearing in the sky from the trees and let our balloons go. Only Liam’s made it out of the trees. The rest of ours got caught up in the branches above. Liam was jumping up and down in excitement as if it were a competition. It made us all laugh through our tears. I’m sure you giggled, too.

We had to come back from Sedona on Friday because your brothers had a basketball tournament to play in on Saturday. It was the playoffs for the YMCA team that your Daddy has been coaching them on. If they ended up winning, they would play again that night for a chance to go to the finals and play next week at the Phoenix Suns arena. They won the first game. After it was over, we ended up taking your brothers and 3 of their friends/teammates out for pizza. It’s these happy moments that I see through your brothers eyes that keep me going. We all sat there together at a table full of boys and we gave them a pep talk about their upcoming game. There were a lot of laughs and the talking was non stop. I am blown away at your brothers and so thankful for what respectful boys they are. Not only them, Ronan but the little group of friends they have made as well. The table was full of please’s, thank you’s, Yes, Mr. Thompson, No, Mrs. Thompson, all coming from a group of 9 year olds. At one point your daddy looked at me and said, “How much would Ronan have loved all the boys’ friends?” So much, Ronan. They are the nicest boys, the hardest little workers, and just so respectful. I know you would have been in the middle of them, causing your little mischief and they would have eaten it up with a spoon.

Your brothers won both games today, Ronan. I looked at them before their last game and said, “Do this for Ro,” as I gave them both knuckles. They both smiled at me and said that they would. I sat back tonight and watched as your brothers played their hearts out and I know it was all for you. Liam had 19 of our 22 points. They were both on fire and so determined to play in the finals. I love watching them play this game so much. I love watching your Daddy coach them. He is amazing at he and is the reason they have become such good little players. He works so hard with them to make them the best players that they can be. It makes me so proud of all 3 of them. I remember how when you were so little and so freakishly coordinated at such a young age how your daddy would talk about how he couldn’t wait to coach your teams. You would have been such an amazing athlete. Our mini Pat Tillman as we used to say. I’m sorry buddy. So very sorry.

It’s late. As soon as your brothers game ended we headed home to get our things so we could head to Tucson. We didn’t want to spend your birthday tomorrow sitting around our house being sad. So, we are taking your brothers to a resort that has one of the biggest water slides in all of Arizona. We will let them run around and be crazy for you tomorrow. Tomorrow we will all do our best to celebrate you by doing something you would have loved. Your brothers are very excited about doing this for you. I will do my best to put on my bravest smile to get through the day. I have a feeling your little sister will help me out. She seems to have a knack for this already. She is already helping me so much just by being here and making me feel like I have a tiny piece of you back. Thank you so much for her, Ro.

Happy almost 6th birthday my spicy little monkey. I love you so much. I miss you. I hope you are safe. Sweet dreams.

xoxo

P.S. Happy Mother’s Day to all of you mum’s out there. I hope you have a beautiful day tomorrow and I know you all know how lucky you are. Please don’t ever forget that.

To all of my mom’s out there who are in my shoes…I know tomorrow will be rough and for that, I am so sorry. I wish you a day full of gentleness to just get through the day. Just getting through the day is something to be proud of. Here is a little lesson I have learned after going through something like this. Days like tomorrow will never get any easier. Ever. So on a day like Mother’s Day when it is supposed to be all about us, take this one day and stop trying to please other people. Take this one day and acknowledge your grief, don’t apologize for it, and do what it is that would make you the most happy on this day. For me, tomorrow isn’t about me and that makes me happy. I would much rather just spend the day celebrating my Ronan through the eyes of Liam, Quinn, and Poppy with my amazing husband. And you know what?? If tomorrow comes and I decide that I can’t get out of bed and do a thing, I know I am surrounded by the people who love me most in the world and they will be o.k. with that. I have learned that surrounding yourself with people who have no expectations of you, is the best way to get through these holidays that are so bloody hard now.

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2 years makes me want to rip my hair out while screaming for you like the wild animal that I am

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Ronan. I’ve started to write a few times, but I’ve erased everything over and over again. I don’t know how to put into words what this day feels like; almost 2 years without you. Your Poppy sister has been a great distraction. So much so that I find myself missing my grief and my pain. So much so that I feel like I am betraying you by not feeling the intensity of my grief as much as I used to because your Poppy sister makes me feel that peaceful. I knew the 9th was coming, but it’s like I’ve had my head buried in the sand because I’ve been trying my best to hide from it. There is no hiding from this day. It will come no matter how much I beg and I plead for it not to. Everybody that knows us, knows what this day brings and those who have forgotten, well what can I say?? Life goes on for them, right? Of course it does. Or as the French say, “C’est la via. Those closest to our hearts are here with us on the day of hell in one way or another. Those closet to our hearts, know how hard this day is for us and are kind enough to acknowledge it. It means so much to me that they do. And those beautiful strangers, Ro. Wow. Oh so beautiful indeed. You would not believe the outpouring amounts of cards, emails, tweets, texts, Facebook messages, etc… that I am receiving. With each and every single one, the tears fall down my face. Love and tears, love and tears, so much love and tears, Ronan. So many beautiful souls are being guided and changed, all for the better. All because of you, the most beautiful little boy to ever walk the planet. Bittersweet beauty I call it. So very bittersweet which you know is the theme of this life I’m now left behind in.

Yesterday was when it really hit me that your 2 year death day was approaching. I went to see your Sparkly before we left town. We sat and I think I looked like a deer in headlights for much of our time together. So much so that at one point I had forgotten for a split second that it was the month of May as I refered to something that was supposed to be happening, to happening in April.

“Sweetheart, it’s May. If that was supposed to happen in April, you need to check up on that,” he said to me while my eyes filled with tears.

Even though I knew it was May, for a split second it slipped my mind because that’s how much I did not want this month, to happen. Seems silly right? I mean, no matter what month it is, you are dead. Nothing can change that or bring you back, even if we could fast forward through this month entirely.

I just looked at the floor. I then looked back up at him.

“2 years, 2 years, 2 years. How can that be already?”

He gave me some smart ass answer to try to make me laugh. I kicked his foot in protest and when he saw that his little wise crack was not going to work, he went into something more serious. Something about my pain and how my pain is never going to go away, but look at all the good I am choosing to do with this pain. How I could have done nothing or even worse, I could have let this pain ruin my life, but I chose the opposite. It was the best pep talk he could give me 2 days before your Deathiversary. We sat a little longer and stared at your sister while catching up on other life things. Right before I left he looked at me and said, “He is o.k. I promise you that.”
I said to him, “How do you know?” “You just have to trust me. I know,” he said. I did what I always do which is made him promise me again. He did. I know he believes this. I believe him, but it still does not take away any of my worry over you. I will forever worry about you, Ronan. I worry about you so much and I don’t think that will ever go away. I am your mother. I will worry about you for the rest of my life even though you are not here on this earth. It’s part of what makes me forever your mom.

We left town. Had to leave town as being in Phoenix tomorrow on the day you died is not anywhere I ever want to be on this horrific day. My idea of putting us all on a plane to Ireland didn’t happen due to not wanting to compromise your Poppy’s sisters non-existent immune system. We drove up to Sedona instead. We spent some time with Dr. JoRo. She bought you a “We miss Ronan,” cake. Please tell me what other therapist in the world would have done something as thoughtful as that, Ronan? I’ll bet you a big fat NO OTHER THERAPIST IN THE WORLD. She is truly amazing and I will forever tell you thank you for her. The world needs 10,000 more of her on the planet. We will spend tomorrow together as a family missing you so much. I will try my best not to reenact the end scene from, “Thelma and Louise,” where they drive off a cliff together. I think your Poppy sister is too young to be my sidekick for that adventure. We will go and throw some rocks over a cliff instead or do something a little more safe but totally dangerous too in a PG-13 kind of way. Please just help me get through the day, o.k.?

This is all I can write tonight. Did I even make sense? I haven’t slept much so sorry if my thoughts are not flowing very well. This was the best I could do tonight through a heavy heart and blood-shot eyes. I miss you so much.

G’nite baby doll. 3:25 a.m. when you took your last breaths will be here soon enough. I’ll be up of course, screaming and crying for you as silently as possible as not to wake up your daddy, brothers or sister. I miss you. I love you. I hope you are safe.

xoxo

P.S. I’ve also decided that tomorrow is National F U Cancer Day. It will never be the day you flew off to go be an angel or went home to where you belong. Fuck that shit. You belong here with me and anybody that says otherwise is a douchebag idiot. Tomorrow is an asshole of a day, thanks to that bigger asshole named cancer so there it is, May 9th National F U Cancer Day. Thanks for killing the love of my life and so many other innocent victims. I will be giving you my best middle finger tomorrow painted extra purple and sparkly just for you, Ro.

As your Mr. Sparky Eyes would say, FUC. I couldn’t agree more.

 

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“This is how dreams die.” -Woody Thompson

 

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I’m not going to go into why I titled this post this way tonight because not everything can be shared. Let’s just say Woody came home and said this to me tonight for a very good reason. All I am allowed to say is screw anybody that sets out to get rich off of kids with cancer. Fucking unreal.

 

Ronan. I cannot believe your baby sister has been here for 3 weeks today. It has went by so quickly. We still have been lying pretty low and I swear it feels like I have been doing nothing but nesting and breastfeeding her since she arrived. The quiet has been good for me. Or at least that is what I am telling myself for the time being. I do miss my crazy insane I’m losing my mind days. Those days got me through a lot of the darkness. I’m sure those days are not over yet… but for now I am just trying to soak in the peacefulness that you sister has brought into our lives. We’ve had a couple of out-of-town visitors. Your Nana came to help out with things and to meet Poppy. It was of course wonderful to have her here as it gave me a chance to do nothing but focus on your sister and let myself become somewhat human again. I was exhausted not from the lack of sleep I’ve been getting, but from the physical part of your sisters birth and the toll it took on my body. Now I am starting to feel somewhat normal again and I know a big part of it is due to the rest I was able to get with your Nana in town. She took a lot of the slack off and for one full week I didn’t have to touch the laundry or cook a thing. It was heaven and so very helpful.

Your Fairy RoMo popped into town just for a day to come and see her new god-daughter. That was a magical day indeed and so special that I can hardly put it into words what it was like to see the two of them finally meet. It was like for once, something in this world without you made sense for  a split second. If I can’t have you here to meet your Fairy RoMo, having Poppy here is the next best thing. We took Poppy all over with us for the day. We had a impromptu Poppy party that was thrown together by Stacy where we sat around at a cute little restaurant and had a nice lunch. It was pretty much her first time out in the world. After that, we took Poppy to your favorite restaurant, Chelsea’s Kitchen. We sat on the patio and went gagaga goo goo crazy eyes over your sister. As I was sitting there, I was taken back to the night of your funeral/celebration of life/one of the worst nights of my life. I was holding your sister and I remembered being there after we had your services. I thought to myself, how in the world could I have come here with a bunch of people the night of Ronan’s funeral? In my white dress looking like a zombie I’m sure. I hardly remember the night except I remember that somebody went and snapped my picture with Quinn on my lap and I remember smiling into the camera. How I even was able to form a smile is beyond me. I know I did it because Quinn was right there and I was trying to act somewhat normal like this is a fucking normal thing to do. Eating Tuna Tacos with a bunch of people after my child had just died and I sat in the front row listening to people talk about about you, holding your brothers hands, without tears streaming down my cheeks because I was too numb to feel anything. And now, here I am, sitting right back at that very same restaurant while holding your sister and kissing her sweet cheeks. How is this my reality again? I wanted to vomit right there on the spot but I just sat there quietly instead doing everything I could do in my power not to cry and hide underneath the table. I let the scene of that awful night play out in my head instead.

Every time I think about you and what has happened lately it’s like my mind is back to not being able to process it. My mind automatically goes to screaming, “FUUUUUUCCCCCKKKKK!!!!” in my head and that’s about it. Sometimes I cry. Sometimes I don’t. I always feel like I’ve been punched in the gut. I took your brothers back to their therapist last week just to check in with them. Quinn did not understand why he had to go because as he told your Nana, “If I needed to talk about something, I would just talk to my mom.” That was sweet to hear and made me feel good, but I still wanted Quinn to check in with Dr. Rachel. I went to talk to her after she met with Quinn. She said that he is doing really well. That the worry brain he used to have, seems to totally be gone. He also told her that he hasn’t seen me this happy in a long time. That stung a little bit. Happy? How can that be? It almost felt like a betrayal to you, Ronan. Don’t get me wrong, I do want your brothers to see  me this way. This is the way they deserve their mom to be… but it still felt weird to hear that. I just wasn’t ready for that word quite yet. It was like swallowing a really big horse pill and doing everything I could, not to choke on it. Dr. Rachel told me she feels like she does not need to see Quinn anymore, even though she would love to because she thinks he is such an amazing little guy, it’s not necessary at this point. Liam on the other hand, still needs some time with her. He is still pretty emotional about all of this. He tends to keep things to himself more so than Quinn does. We talked about making sure she gets some time with him before the shit storm of May 9th and all the lovely dates after, follow.

Your brothers are of course so in love with your sister. It is so strange to watch them with her, thinking they were doing the exact same thing with you after you were born and how you are just gone now. They both fight over who gets to hold her, kiss on her, and love on her. They both say the funniest things about her. The other day I had an outfit on her that was too big because she is so tiny that much of the stuff I have for her is big. The little tank top she had on kept sliding down and Quinn goes, “Mom, why isn’t she wearing a bra? People are going to see her privates.” I almost peed my pants over that one. The innocence at 9 years old melts my heart like crazy. They both can’t get over the fact that she doesn’t have teeth and Liam sits there with her and tries to teach her to talk. He’ll go over and over, “My name is Liam. L-I-A-M. You’re name is Poppy. P-O-P-P-Y.” It is the cutest thing ever. I’m sure if you were here you would be doing things like coloring on her with markers while I had my back turned or taking her hair and putting tooth paste in it or cutting it with scissors. You were always causing trouble in the best way possible.

Your daddy has been doing things with Poppy like playing her guitar. The other night I was sitting in bed with your sister listening to your daddy play to her. I said, “You need to learn a Taylor song for her.” He asked me which one and said, “Not Ronan. I love it, but I don’t think I can get through that one just quite yet.” I agreed with him and immediately went to one of my absolute favorite song of hers. That one from The Hunger Games soundtrack, “Safe and Sound.” Fast forward a week later and your daddy has that song down to a tee. I remember where I was the first time I heard it on the radio. We were in Maine for the 1 year anniversary of your death. Your daddy and brothers ran into a restaurant to pick up pizza and I was sitting in the car alone. That song came on and I started bawling like a baby. I thought it was so beautiful and could not understand how I had not heard it before. I sat there thinking how much I would have loved to sing this song to you as the words resonated with me so much. Now here we are and your baby sister will grow up with your daddy singing this song to her. Once again, the next best thing to actually having you physically here with us.

Our visitors have still been far and few. Your Sparkly came by last week for a bit just to check in. I showed him your room and how different it is now. I think it was hard for him to see, but he said it looked beautiful. It was hard for me to show him. After that, we mainly just sat on our couch and stared at your sister while catching up on some things. Sometimes a lot of words are not necessary. As we were sitting on our couch he asked where your Nana was. She had gone out to run some errands for me so she was not home and I told him how she has a hard time sitting still. He goes, “Now I know where you get it from.” I just smiled at that. He then goes, “Where is your mom sleeping? In Ronan’s room?” I paused for a minute and told him yes. You see this Ronan? This is why Sparkly gets it when not many other people do. Those 3 words, “in Ronan’s room,” meant so much to me. Sometimes the littlest things mean the most and that is a prime example. Sparkly quietly said how he can’t believe how much she looks like you. Cue tears here. End scene with them sloppily falling everywhere as I said I knew. That dimple. I still cannot get over it.

That’s my update for today. I’ve started hiking/running again. I know I’m supposed to wait 6 weeks postpartum, but they don’t call me a rebel for nothing, right little man? The exercise feels good. Today has been a little tough for a couple of different reasons, but mostly just because I seem to be missing you more than ever. Throw May on top of all of that and it’s a wonder I can even leave the house and function like a normal person at this point. I’m going to go for a run to blow off some of this never ending pain. I miss you. I love you. I hope you are safe. F U Cancer.

xoxo

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2 years ago today, I went to Hell

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Ronan. 2 years ago today, April 23rd, I went to Hell. I’ve been to Hell a few times in my life and it’s not the place that people think you go after you die and you have lived a life of sin. Hell to me is right here on earth. Hell to me are the things I have experienced while living; half alive. April 23, 2011, I went to Hell. It was your last scan day at Sloan Kettering. Fernanda was with me. I remember every detail about that day as if it had just happened yesterday. The waiting in the waiting room for Dr. Kusher to come out and read us your results. Watching my friend, Doriet, howl like an animal in that same waiting room as she had just been given the news that there was nothing left to do for her daughter, Esther. Grabbing Doriet as she walked by and squeezing her so tightly as I whispered in her ear that we would find something or someone to help. Looking at Fernanda and saying to her, “They have to walk out of here having just being given the news that there is nothing left to do for their daughter. How are they going to leave here? How can that just be it?” I had no clue that 20 minutes later I would be in the exact same situation.

Fernanda and I sat and waited. Dr. Kushner came bursting through the doors, breezing right past us. Fernanda whispered to me, “There he is! Ask him!” I watched his body movements, the way he avoided eye contact with me and rushed right past me as if he didn’t see me waiting there. I knew he did. My stomach dropped to the floor. My name was called to come back and get you as you were waking up from your anesthesia. I couldn’t wait to scoop you back up into my arms, safe and sound. You were groggy, but so happy to see me. You were upset about the bone aspirations in both of your little hip bones asking me why I let them do that to you. I rocked you out back out in the waiting room to try to calm you down. Then the sign of all signs that everything was about to come crashing down. That damn necklace. My “lucky,” necklace that I had worn religiously on every single scan day, broke in two and went falling on the floor. I watched the necklace fall to the floor in slow motion. I swear time stopped. “Dr. Kushner will see you now!” we were told. I grabbed you, Fernanda followed me, and off we went. I felt like I was walking the plank of a pirate ship with a big sword in my back, waiting to be dumped into a sea of blood hungry sharks.

Dr. Kushner was waiting to see us alright, but not in the way that I wanted. He paced back and forth like a caged animal. He couldn’t or wouldn’t look me in the eyes. “The treatment. The treatment didn’t work.” I sat there, shaking, as you played on the floor with some cars or something. I don’t remember much after this except saying to him, “O.k. well, I know you have a plan, because you said you wouldn’t give up on my child, so I’m going to go back to Phoenix, until you figure out what is next.” He called your daddy too at some point. I don’t remember what was said. I remember feeling like my legs were cement and I couldn’t get up off of the chair. Somehow I managed. I also managed to give that Dr. Kusher a hug and say “Thank you. You are a good man.” I said this to a man who was too much of a coward to give me the decency of looking me in the eyes and just simply telling me he was sorry. I picked you up and off we went, somehow managing to make it back to the Ronald McDonald House to pack up our entire life that we had created in a matter of hours to hop on the soonest fight out of there. I did none of this. I threw Coconut Water at the wall and watched it explode everywhere and I told you we were having a Pop throwing party as I sat on the floor with you and Fernanda and we let all kinds of soda and water explode everywhere as we threw it against the wall and all over the floor. You thought this was funny. I did too as I lost a piece of my mind that day, never to get it back again and I honestly don’t miss it at all.

I sat a the basement somewhere while Fernanda stayed with you and let you chase her about. I screamed and cried into the phone to our Mr. Sparkly Eyes. He could barely talk as he know nothing was going to calm me down. I remember him just begging me to get it together, so I could get you home and he promised me we would go from there. I think I said the words, “No,no,no,no,no,no,” over and over again as I could not even form a sentence at this point. Valium somehow came into play I think. The next thing I knew our 10 suitcases that came out of thin air were packed and we somehow managed to get a late night flight out of New York home to Phoenix. Again, not me. That would be the magic of Fernanda. Only she could somehow manage to orchestrate something of that magnitude in the middle of the biggest shit storm of both of our lives. Somehow we survived scan day from Hell to be plopped back to Phoenix. I remember nothing after this. I don’t remember the reunion with your daddy and how the fuck that conversation went. I don’t remember getting home to our house and explaining to your brothers what was happening. It’s as if my memory of the next few days has been erased. I guess that happens when you suffer from something as traumatic as what had just happened in New York. Part of the PTSD I suppose.

Fast forward and here I am 2 years later having survived one of my many trips to Hell and back. Here I am having spent all day today, thinking about you and what I was doing 2 years ago as I was still fighting with everything I had, to save you. Today, I spent much of the day like I have been since your sister was born. Rocking her. Snuggling her. Feeding her. Taking care of her. Listening to my head as it screams for you, but the screaming is a little less now that she is here. Wondering if your sister is you, reincarnated. Is that a real thing? I don’t know, but it crosses my mind. What if it were. How would I feel about that, if it were? Would it make this pain, any less? I don’t know. It’s because of that dimple of hers that I can’t stop thinking of this. That secret dimple that you had on the right side of your face down by your chin. The tiny little dimple that only showed up when you smiled. I think that she has it too and it is freaking me out and making my mind think insane things like, “What if this is Ronan’s way of coming back to me because he saw how much pain I was in and he couldn’t take it anymore so he came back as a baby girl…” You know me and my imagination… wild and crazy. Then there is the other little voice in my head saying, “Don’t be crazy. This is Poppy not Ronan, but she is here to save you too, but in her very own way. Her magical, special, Poppy way.” Whatever the real answer is, Ronan, I’ll take it. Because either way is a gift from you. I know this.

Your Nana is here and it has been wonderful. She is so helpful to me and I love watching her bond with your sister. She is such a good Nana. It is all bittersweet, but I know you would want it this way. You would want us to be happy as much as we are able to, without you here. Tomorrow, your Fairy RoMo is popping into town, just to take a peek at your sister and meet her god-daughter. I am so beyond excited to see her and introduce the two of them. I know it will be love at first sight. I only wished she could have met you as well. Tomorrow, I feel like she will be meeting a piece of you and it is going to be such a beautiful thing to see. Your little sister is one lucky girl to have a Godmother like her as she truly is one in a million.

Alright little man. I’m sorry I haven’t been writing, but things have been busy, yet calm. We are all truly just soaking in this little window of time with your sister as I know how fast the newborn stage goes by. She is a dream and is such a good baby. We are all amazed at how she doesn’t cry. Ever. She is the most peaceful little thing. I guess somebody must have told her how badly we were all needing a little peace in our lives. Thanks, baby doll. I miss you. I love you. I hope you are safe. Sweet dreams

xoxo

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That Poppy girl has saved my life

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Ronan. I forget to write about 23 months without you. I was in the hospital with your Poppy sister. It was the day after I had her. I told your Mr. Sparkly Eyes how I thought that you and your sister had planned that I went into labor on the 8th, so that when the 9th came around, I wouldn’t be so sad because I would be holding your baby sister safe and sound in my arms. I do think this is true. It was the first time that the 9th wasn’t completely gut wrenching for me. How could it be with your sweet sister snuggled up to me? She helped me get through the day. You know what comes next though. Next month. 2 years without you and I’m sitting here scratching my head saying how can that be? How can it already be 2 years since you left this earth? It doesn’t seem possible. And guess what else this year is. Your birthday is the same day as Mother’s Day. How am I supposed to get through that one? Mother’s Day is hard enough now, but the fact that it falls on what should have been your 6th birthday is just beyond anything I am capable of handling. I am trying not to panic about it all, but I said to your daddy tonight, “We need to come up with a last minute May plan, because I can’t be here.” He promised me he would, so I am trying to relax a bit about it but it has still been keeping me awake at night. I hate the month of May.

May-

Your death day

Your birthday which also happens to be the day you were cremated

Mother’s Day without you

Your funeral Day

I won’t ever love the month of May again.

I will get through it the best I can, just like I did last year. It’s all I can do just to survive it.
Everything around here is really calm and peaceful. I feel calmer and more peaceful than I have in a very long time. It’s because of Poppy. She makes me be still and quiet in a way that is not forced. In a way that I haven’t been able to do since you died. She has given me such a gift already and she is only a week old. It’s amazing the way she seems to be working her little magic on all of us. I have been doing nothing but spending my days with her, being quiet and still. Having your Poppy sister has saved me. I know to make a statement like that is a bold thing to say, but I can say without a doubt, she has saved my life. We talk about you a lot. All day long when I am rocking her in your bedroom and she is looking all around. I tell her stories about you, I tell her how much you love her and are watching over her, I tell her how lucky she is to have you as a big brother and Liam and Quinn as well. Having her in your room was a good decision on our part. Your room no longer seems so sad, empty and cold. I was rocking her yesterday and your daddy came in to check on us. He asked if it was hard for me to be in there with her. I nodded my head that it was, because it is; but there is also something comforting about it too. We still haven’t seen too many people as we are still just trying to take our time and get used to this new little life. Quinn made a comment about how weird it felt to have another person living in our house again with us. To me that just screamed how much your little life is missed by us all. How much your absence is always felt. I still get mad a lot but I find that I am not as reactive with my anger. I find myself sitting and trying to process all of this on a deeper level but I mostly just sit in disbelief that this world has to be without you. How dull and empty I know this world is without you presence. This makes me mad and sad and I want to scream from the rooftops how unfair this all is because I know you would have grown up to do such amazing things in this world. I wonder how come the whole wide world doesn’t feel this way, too. About you and all of these other kids who are dying left and right from childhood cancer.I am so thankful for the people who are now paying attention and fighting the good fight, but I just don’t understand why the whole world isn’t in an uproar over this. I guess if it doesn’t touch your life personally, it is easier just to look the other way and go about your business. That makes me sad. Nobody deserves to get cancer, but especially not children. And if they do get cancer, there should really be better treatments and options. You deserved better, Ronan and I will forever be so sorry that after everything that we tried and did for you that it death was still the final outcome. I will never stop apologizing for this.

I’ve been spending most of my days in your room. Your daddy hung a big beautiful picture of you over your bed last night. I swear I stare at it all day long. Sometimes it makes me cry, sometimes it makes me smile, it always makes me miss you with everything that I am. That will never change.

Alright little man. This is all for now. Not a lot has been going on so I don’t have a ton to write about. Please keep your Poppy sister safe. I worry about her so much already. I miss you. I love you. I hope you are safe.

xoxo

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The day we pretended like you were alive

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Ronan. Today, I got a phone call from your brothers’ school in the middle of the day. A phone call like that is never good. I picked up and listened as the school nurse informed me that Liam got hurt at recess and I needed to come and pick him up because he needed stitches. She was a little panicky which led me to hauling ass to the school as quickly as possible. Once I was there, I checked out the damage done and it didn’t seem too bad. She cleaned out his elbow and he actually did have a pretty deep football war wound. She told me she was pretty sure he was going to need stitches. I put Liam in the car and calmed him down. He was pretty freaked out about the stitches part, but was trying to act so brave as he hid his tears. I told him stitches may not be necessary and told him if they were, the doctors have some great numbing medicine that they would put on it so he wouldn’t feel a thing. I called our doctor’s office and I was informed that they wouldn’t do stitches on the elbow, so we should head down to PCH. Down to PCH we went for our little adventure of the day.

We got a room pretty quickly and the nurse in charge came in to check out Liam’s elbow. He started asking all sorts of questions like how did this happen, are you in pain, etc… All the basic questions that are necessary. I stayed out of the question answering part of this as I am aware that your brothers are big enough to speak for themselves but being the mother hen that I am, I always want to swoop in and answer for them anyway. I let Liam do the talking. After all the formal questions were out-of-the-way, next came the fun ones. “How old are you? What grade are you in? What’s your favorite football team?” Liam answered them all without skipping a beat. The next question came. “Do you have any sisters or brothers?” Oh god, I thought to myself. How is he going to answer this? “Yes. I have 2 brothers and a baby sister on the way.” I let out a sigh of relief. The next question came. “How old are your brothers?” Liam answered, “My twin brother is 9 like me and my little brother is 4.” I looked up at Liam as I wasn’t expecting him to answer like that. So nonchalantly, as if this were absolutely true and we were just another normal family where you didn’t die from cancer. “Wow! 3 big brothers! Your little sister is one lucky girl!” said the nurse with a big grin on his face. Liam then goes, “I know, ” as he shot me a big grin from across the room. I had been watching his face this entire time and gave him a big smile and a wink. He winked right back at me. Winking was something you used to do to me all the time. I remember how you mastered it while we were in New York and you were so proud to show it off whenever you could. This winking moment with Liam totally made my day. It reminded me so much of you. You were the best little winker. I swear we have been smiling ever since. I don’t know if this is right or wrong. All I know is it felt like a really beautiful moment that I wasn’t going to let pass me by. Today, I did not feel like swooping in and explaining our real truth while my voice quivered and tears ran down my cheeks. Today, I felt like smiling right back at your sweet brother and going along with our perfect little happy family story that at one time, was really ours.

Liam ended up not needing stitches. They were able to clean it out, gauze it up, and bandaged it up really well. It looks like a really good war wound. He was most concerned that he was going to have to sit out at his first baseball game that night. I told him we would see how he was feeling, but it might be a good idea to rest his arm. That’s what ended up happening. Your brothers had their first baseball game last night. I went and sat and watched. Our dear Kassie came with me. Your brothers were so excited that she was coming to watch. It was a great game and they ended up winning. I always find myself missing you during these times so much. I know your brothers do, too.

I had a Poppy check up yesterday. Everything looks good with her or according to Dr. Schwartz, “She looks perfect!” I said I knew, that all of my kids always looked perfect. It’s the after part does my new baby have cancer I’m worried about. We talked a bit about newborn screening. We talked a bit about the date which I would prefer for Poppy to make her entrance into the world. She knows how nervous I am and has been so good with me about doing whatever it is I need done to calm me down. She asked me if I would ever do this again… the have another baby part. I told her I didn’t think so, that mentally it has been really hard for me. Let’s just get Poppy here safe and sound. I can hardly wrap my brain around any of this, let alone thinking about another baby. Yikes. That seems like a lot. Dr. Schwartz told me she is measuring a week ahead of schedule in her height, but not in her weight which is a good thing. I’m sure she is going to be so tall and have those long legs of your daddy’s. We are slowly getting things ready around here. All of this still doesn’t really feel real to me. I know it’s going to take her actually having her here, for me to fully grasp all of this.

Alright little man. I need to run. I miss you. I love you. I hope you are safe.

xoxo