Tag: raw

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

A Phoebe Update

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http://www.caringbridge.org/visit/phoebe26/journal

“Do this for Ro.”

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Ronan. I survived your 22 months. It was actually an o.k. day. It didn’t start out that way. I woke up, upset, crying, worrying about you like I always do. I swear I worry about you more now than I did when you were here and alive. Your brothers had basketball playoffs. They were the only team undefeated in their league. Your daddy spent all week practicing with them, coaching them, playing with them and their hard work has really paid off. On Saturday, they had an early morning game and if they won that, they would head into the final championship round. Your daddy and I spent the morning giving our usual pep talks and telling your brothers how proud we are of them. Off to the game we went and you could feel how excited they were to be playing in the playoffs. Before the game started, I walked on to the court, gave them both fist bumps and said, “Do this for Ro.” They both smiled and said, “O.k. mom.”

I sat back and watched your brothers as they had the time of their lives as they played their little hearts out. Both of them played the best games of their lives and the first game was won. We took them for lunch after as we had a couple of hours before their next game started. We talked in the car about how great they did, how great their whole team did, and how proud we knew you were. I tried not to get too sad as we talked about you and did my best to keep a smile plastered on my face. It wasn’t hard but talking about you and not having you around, still hurts for me and still takes me breath away. I would so much just rather have you here but beggars can’t be choosers, as they say. Your brothers went into the final game wanting to win it all so badly. That is exactly what they did. I watched them fight for something that they really wanted. I watched the fire and passion pour out of them as they played. I know much of this was fueled by you. It made my heart skip a beat, watching them on the court. Basketball has become their passion and outlet. I truly feel as though it has saved them in a way. The smiles on their faces after the game and the days to follow have been smiles that I will never forget. I know I say this all the time, but I am so proud of them. I am so lucky to have them. They truly are the best little boys.

Things here have been busy, but I’ve been trying to keep things as calm and peaceful as possible. I’ve started seeing Dr. Schwartz every week. Today, we sat in her office and talked. I asked her when she would be able to strip my membranes, to get this baby girl out. She asked if I was miserable. I told her no, that I just had a lot of anxiety. I told her about the support group I went to last week and how pretty much everybody in the room had a baby that had died of still birth. She said she could not believe I went to that. She sat down with me and told me she was sorry. That if I was that anxious we would of course figure out a plan. We picked out a date. I felt a little better after leaving there. She told me not to go to any more support groups as of now. I told her I would not, that I would just continue to see Dr. Jo, one on one. That seems to work best for me anyway. Those support groups have never worked well for me. It’s great to connect with other parents, but having to listen to everyone tell their stories is beyond heart wrenching and I’m not really in a strong enough place where I am o.k. with it. I wonder if I ever will be.

I had a little phone call today. I don’t want to talk about it too much as of now, but we’ve got some crazy big things in the works. I feel very blessed and excited to have such big power houses involved with your foundation. Not only powerhouses but powerhouses with the BIGGEST hearts of all. That makes such a difference to me. After my phone call, I ran to the post office to mail out some bracelets. I’ve become pretty friendly with my post office lady due to being there all the time. Today, she asked me what I was so busy mailing off. I told her the rubber bracelets I wear around my wrists which are for my son who died. She looked at me and bluntly goes, “How are you doing with that?” I just told her, “I’m not.” She told me that it will never get easier and confided in me that she had lost 2 sons. I told her I was so sorry. I thought to myself, another mom who knows this, gets this, and is not scared to tell me it doesn’t get easier. Then to my surprise she told me a sorry wasn’t necessary. That her boys where exactly where they should be, with god. My stomach dropped. A year ago, I would have lost my shit on my blog and ranted about what in the world is wrong with all of these delusional people, that think this way. If somebody tells me this, who does not know what it is like to lose a child, I might still punch them. But when it comes from somebody else who has lost a child, I am not going to judge that or tell them their way is wrong and mine is right. If that is what she truly believes and that is what gives her peace, more power to her. I quietly told her that I didn’t like that saying. That there is no better place for my son to be, but with me. I can agree to disagree with her on that one. I walked out of the post office thinking about her words. Not mad, not sad, just accepting. Obviously this woman has a stronger faith than I do and I am glad that she does. What works for her is not for everyone. What works for me, is not for everyone. At the end of the day, both of us are still here and we are surviving this extreme loss, day after day after day. That makes us both fighters in our own way. We both know how this pain feels. We both know this pain will never go away. We should all be proud of ourselves for finding our own light at the end of the tunnel that gets us through this; no matter how differently it may be.

I ran and saw your Sparkly for a bit today, aka, my peace. He is the only person that I feel complete and utter peacefulness around, Ronan. It’s been this way since the very first time that we met him, just the two of us. I’ll never forget the wave of calmness that washed over me while I was holding you in my arms and he came bursting around that corner. I knew that instant, that he was going to take care of us, no matter what happened and he has. I will forever be grateful for the bond between the two of you and now, to have him be the godfather of your baby sister… that is truly such a gift. He knew I had a hard week last week and was relieved to see that I was doing a little better this week. We talked about you and your Poppy sister much of the time. He kept telling me how excited he is for her arrival. I am so excited to meet her as well, but I might be even more excited to watch him hold her for the very first time. He has been with me in death and now this new life. I know a lot of people have, but he really has seen me through everything. The worst of the worst and now the best of the best. He laughed at the way I was touching my belly and made sure to throw in some smartass remark about how big it has gotten. I know he only did this to see me laugh, which I did. Your Sparkly always has a million tricks up his sleeve to make me smile. I love that about him. I told him how I couldn’t wait to have a little one to take care of again. I know it is going to be so good for my heart. I know she is going to be so good for everybody’s hearts. Thinking of this always makes me smile. The sweetest part of this for me will be seeing the way she brings a light into so many of our worlds. Especially your Daddy and your brothers. I know she truly is a gift from you and I will find comfort in that. I left your Sparkly with a smile on my face. Just the way he likes to see me. I am glad I was feeling alright enough today, to do so. I don’t like the days that I have to leave him any other way.

Alright my spicy little monkey boy. I have to get some things done around here. I miss you. I love you. I hope you are safe.

xoxo

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I love you

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I watched this video a lot yesterday. It only added to my breakdown. I miss your squeaky little voice, so much. I love you, Ronan. I’m so sorry.

http://www.youtube.com/watch?v=T3HsDsrBwb8&list=UUDEakKuXcCmFO8KnT4FdmBQ&index=17

I’m sad, I’m sad, I’m sad.

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Ronan. I’m in route back to Phoenix on your 21 months since you left this earth. I’ve been having flashbacks of the end of your days, off and on today. Mostly it is still so painful that I find myself trying to block out the memories of that horrific time from flooding my mind. I’ve been telling myself all day things like your death, isn’t really real. I’ve been telling myself all day this is somebody’s else’s life and not my own. Sometimes I pretend like I am watching a movie or reading a book of a stranger who is living the life that I am living. Avoiding my reality once in a while helps me get through the days that I just can’t take living this life without you anymore. Eventually, reality always comes back and smacks me in the face though. Tonight a big dose of reality is waiting for me as I step off this plane. I know what I am coming home to. Your daddy and brothers will be waiting for me so excited at the airport. I know the tears that will fill my eyes that I will have to fight back. Of course I am happy to see them but it’s you I want to see the most and you are never there, waiting for me with the 3 of them like you should be. I will always look for you though.

New York was a good trip. A productive trip. I met with quite a few people and will have some decisions to make. I met with one editor from a certain publishing house, more than once. Once in a formal setting and once again, outside of her office. I felt a connection with her that I often don’t feel after just meeting someone for the first time. I know what part of our connection is. She has a Ronan. Plain and simple. She has a son that she is absolutely insanely in love with and she completely gets the bond that I have with you. We sat outside of her office and I told her some things that I don’t share with just anyone. We talked a lot about you, about her son and all the things you are making happen in this world. She knows that you are the force behind everything that comes my way. She talked about my natural talent as I writer. How some people try so hard to become a writer and they just don’t have the natural ability that I have. She told me that she knows that this is a gift from you. It’s one of the things are you driving me to do in this life. She told me I could have chosen to do anything after losing you, but this chose me and it’s what I will do for the rest of my life. “You are a writer, plain and simple. This is what you were meant to do and will do for the rest of your life.” Coming from her, I was beyond flattered. She’s a pretty big deal in the literary world and is a writer herself. Hearing those words from her meant a lot to me. I took everything she said to heart and appreciated her willingness to be so open and honest with me. She has given me a lot to think about. I love people like that. The one’s in life that make you think about things from every different angle and don’t want you just to take the easy way out.
With the little free time that I had in New York, I spent it with Rachel. Our Rachel that feels like a younger sister to me. We walked all over the city. So much so that at one point I told her I felt like my vagina was going to fall out due to the heaviness of carrying Poppy. Sorry if that was TMI, but if you’ve ever carried a baby, you know what I am talking about. I took her to your favorite pizza spot, Deliza’s, which is right by the Ronald McDonald House. I knew I wanted to go there during this trip but I imagined going all alone and crying into my favorite soup. Instead, I grabbed Rachel and took her with me. I was so glad I didn’t have to sit there alone. I ate your favorite pizza and soup. I wish I could tell you it tasted as amazing as I remembered it with you, but of course it didn’t. Nothing in the world will ever taste as good, smell as good, or feel as good as it did when you were here with me.
I’m not going to lie. I’ve noticed myself starting to have a really hard lately. As in really hard. Really hard in the way that I felt not long after losing you. I remember the 6 month mark being a really hard time for me. I feel like I am back there again. I feel disconnected from everything and everyone. I feel myself slipping into my alone place, not wanting to connect with anyone. I’ve noticed my heart racing a lot like I am having panic attacks again. I cannot wrap my head around the fact that you are dead and the world is just going on when mine seems to be standing still. The world seems so noisy and not in a good way. It seems to be filled with all the wrong things, the wrong people hurting others, the wrong everything. Everything seems to be suffocating me. I’m sure my feeling this way is due to a combination of things. I am about to have this baby girl and also your 2 years since you died is right around the corner. I find myself obsessing about you and why you are not here. I find myself obsessing about your safety, your happiness, your sadness and who is taking care of you when it should be clearly be me. I am angry and sad in a way that I haven’t been in a while and there is nothing that can make this pain go away or better. I day dream of leaving this fucking life behind because sometimes my sadness is just too heavy and too much. I am trying to get excited about Poppy, but all I can focus on is not having you physically here to be a part of her life. I know you will be a part of her, Ronan, but not in the way I want or you want. It’s not the same as having you here.
I sat today and tried to be productive. Mostly my day was filled with my tears that seemed never-ending. I went to see your Sparkly for a bit. I hate seeing him on days like today where I am so sad that I can tell it hurts him.
“I don’t know what’s going on. I’m so sad and I can’t stop crying. I just miss him so much.”
  I could see the way his eyes were starting to form tears as he said to me, “You just spent the past week talking all about Ronan in New York. Thinking all about Ronan in New York, not that you’re not always thinking about him but I know everything in New York was very intense for you. You aren’t sleeping at all. You have a baby on the way. You have to be mentally and physically exhausted, sweetheart. I don’t know why you continue to do things like this. The going to New York thing all alone. It’s too much, especially at this point in your life.”
Me: “But I always do these things alone. That’s how I like it.”
Him: “I know you insist on doing all these things alone, but it’s not the way it should be. You are back now so please just take these next few days to just stop. Slow down. You’re doing too much.”
I just let my eyes fall to the floor. I wanted to say I don’t know how to stop. How stopping will make me want to run up my mountain 8 months pregnant and not come back down. But I just promised him I would try instead.
We sat for a while longer and caught up. As I was walking off your Mr. Sparkly Eyes said, “Hey, please just give me a smile. Even if you don’t mean it or don’t feel like it. Come on, just try for me.”
Not even him begging for a smile could make one appear today. I was not about to put on a pretend one for him either. So I just turned around, walked back and wrapped my arms around him instead. I stood that way for a minute, while the tears fell down my face. I wiped my tears away and let him tell me it was going to be alright. I nodded my head and walked off repeating the words over and over again, “It’s going to be alright, it’s going to be alright.”
I don’t know if things will ever be alright, Ronan. All I know is this is the way it is.
I miss you so much. I love you so much. I will forever be sorry, sad, and brokenhearted. I hope you are safe. G’nite baby doll.
xoxo

There’s also this…

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Thank you to whomever nominated me for this. Best lovely little blog readers, ever. You can vote once a day. Are you all sick of voting for things for me yet?! I’m sorry! It makes me feel bad, but it’s amazing all the great things that have come from it! You all are powerhouses!

https://www.facebook.com/parentsmagazine/app_124605674371692?ref=ts

I’m not dead, I’m just in New York.

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Turmoil. A state of great disturbance, confusion, or uncertainty.

Ronan. I’ve decided that I live in a constant stream of turmoil. I have known this for a while. I am trying my best to learn to live with this as there is no outrunning it or getting rid of it. It’s not going away anytime soon. It will always be a part of my life, so I’d better learn to just accept it.

I’m in New York. I’ve been here for a few days. I took the Red-Eye out late Monday night. I can tell you I was honestly sad to leave your daddy and brothers. I hate that because of this new life, our family often has to be apart. It wouldn’t be this way, if you were still here. All I ever wanted in this life was our family, healthy, and together. I’m still pissed off that some fuckwad decided that was not o.k. The Red-Eye was a little miserable. I normally love it, but try being almost 8 months pregnant and getting comfortable on a flight while trying to get some shut-eye. Poppy was not happy. I kept thinking I was going to squish her, sitting down for that many hours and not really being able to stretch out. Of course I kept picturing the umbilical cord wrapped around her neck and the cause of her death being the Red-Eye to New York. Insanity often fills my mind and as always, I don’t fight it, I just talk my way through it. I arrived to New York with Poppy still alive and going crazy in my stomach. She seems to always be moving about. I was beyond exhausted and fell asleep as soon as I arrived in the city and my head hit the pillow. Thankfully, I didn’t have any meetings scheduled for Tuesday so I just rested the entire day. I met up with our little, Rachel for a quick dinner and we went to Bloomingdale’s to eat your favorite Fr-Yo, but that was my extent of going out.

The rest of my time here has been full of meetings. Lots of good meetings, interesting meetings, emotional meetings. For the most part, I’ve held it together quite well. I was a little emotional today during a meeting I had at one of the publishing houses. Somedays I can talk about you until I am blue in the face without breaking down. Today was not one of those days. It wasn’t too bad. It’s not like I threw my head down on the table and sobbed into my arms like I often do. Today just proved to me that I felt comfortable enough with the people in the room to let my guard down a little bit. I think it was actually a very beautiful thing. I love when I see in other people’s eyes the way they believe in you, in us, in our never-ending, crazy, intense love story. I saw that today and it is always such a powerful force to be reckoned with. I am always thankful for it.

After my last meeting, I popped over to Solving Kids’ Cancer to see my two favorites, Scott Kennedy and Catherine London. My two sidekicks in all of this because they get this in a way that most people do not. In a way that I wish they did not, but they do and now they will forever be a part of my soul and my life in this fucked up journey. I see myself when I look at them and it is always heartbreaking, but they are also two of the most beautiful people I’ve ever come across in my life. Our visit was short, but I was just glad I was able to see them at all. Even though my time here has been packed, seeing them is always a must.

This is all for my little update. I know it’s short, but I just mostly wanted to check in with you all to tell you I’m alright. I’ve been getting quite a few emails with people worrying about me because I haven’t posted in a while. You all are the sweetest. I am o.k. Just busy and I always try my hardest to unplug a little while in New York. It’s my own little time out to breathe for a bit. Thanks for checking on me, worrying about me, and loving me. You crazy peeps, you;) You all make me smile.

I love you, Ronan. I have a lot to think about. I am trying my best to really take my time with any decisions that will be made in regards to this book. I just want to make you proud. Sweet dreams, little man. I miss you. I love you. I hope you are safe.

xoxo

I have been watching this for days. And crying about this for days. This is why new, innovative research is so important. It’s time to think outside of the box.

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I am so proud that the first thing you all helped us fund, went to CHOP. They are doing such groundbreaking, amazing things for the right reasons over there. Thank you all, for helping us support them.

xoxo

http://vimeo.com/54668275

2012 in review. Wow. These stats are AMAZING! Thank you for reading!!! xoxo

The WordPress.com stats helper monkeys prepared a 2012 annual report for this blog.

Here’s an excerpt:

About 55,000 tourists visit Liechtenstein every year. This blog was viewed about 8,600,000 times in 2012. If it were Liechtenstein, it would take about 156 years for that many people to see it. Your blog had more visits than a small country in Europe!

Click here to see the complete report.

A Gold White House!!! We are SO Close!!! Thank you ALL!

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Ronan. I don’t ever watch things on YouTube about you because it is just too difficult for me. There are so many beautiful things on there and for that I am forever grateful, but I leave them for other people to enjoy. Today was different. Today, something came across my way that I could not ignore. I sat and watched it all, sobbing while doing so. I always cry due to missing you, Ronan, but today I also cried because I was so moved by this darling girl and the way she took it upon herself to a voice for you and all kids who are dealing with cancer.

Talk about inspiring. Talk about touching. Talk about watching the world change right before my very eyes and knowing it is all because of you. The youth of today will be different as well as so many others because of you. I don’t know how the White House can possibly say no to our petition. We are almost to 25k signatures and for that I am beyond thrilled! You all really didn’t think we would stop at 25k, did you?! No way. We are going to keep this thing going and get as many signatures as we can until February 6th. Let’s blow this out of the water and give the White House absolutely no reason, to say no. The more signatures the better.

Thank you, Chloe for your amazing YouTube video of Ronan. Thank you for understanding at such a young age, the right things to fight for. I know Ronan is so proud of you, as am I.

Thank you all for rocking this petition. I could not have done it without you. Thank you, Woodddawg, for doubting me. You know the best way to make me get things done is by saying telling me I can’t do it. I love you for that.

xoxo

http://www.youtube.com/watch?v=_v0N5y4AW2A

Keep signing and sharing. YAY!! Almost there!!

https://petitions.whitehouse.gov/petition/light-white-house-gold-month-september-honor-pediatric-cancer-fighters-and-bring-light-cause/syV6M6wX