All posts tagged true love

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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by rockstarronan on April 23, 2013  •  Permalink
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Posted by rockstarronan on April 23, 2013

http://rockstarronan.com/2013/04/23/2-years-ago-today-i-went-to-hell/

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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by rockstarronan on April 17, 2013  •  Permalink
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Posted by rockstarronan on April 17, 2013

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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.

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by rockstarronan on March 23, 2013  •  Permalink
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Posted by rockstarronan on March 23, 2013

http://rockstarronan.com/2013/03/23/i-was-never-going-to-be-ready-for-today/

A SPLENDID Event!

 

 

 

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How SPLENDID is this! Get this event on your calendars for 4/11/13! A discount at one of our most favorite retailers AND they are committing a minimum donation of $1000. 3 cheers for SPLENDID!

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by rockstarronan on March 20, 2013  •  Permalink
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Posted by rockstarronan on March 20, 2013

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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

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by rockstarronan on March 20, 2013  •  Permalink
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Posted by rockstarronan on March 20, 2013

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The pink lint in the dryer made me cry

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Ronan. A few weeks ago I said to your daddy, “I think I can be o.k. if we put Poppy’s crib in Ronan’s room.” He looked at me startled, and told me hearing those words out of my mouth gave him a lot of anxiety. I said those words a few weeks ago and nothing had been done, until today. My thinking behind this really came down to two things. 1) If you were still here, you would be sharing a room with Poppy anyway and 2) I am so tired and sad of walking past your empty room, day after day and night after night. Your room is big enough that there is enough space to leave your side pretty much the same, we will just change the other side where the extra bed is. We are leaving your bed and will put Poppy’s crib on the other side of the room. There are things we will do to your room, to make it Poppy friendly, too. Originally we had planned to add on another room, but that is not a project I could mentally take on at this point. Living in a construction zone with a new baby was not anything I felt up for and I’m still dealing with the whole I don’t want to do too much, until Poppy is actually here. Poppy is almost here. I have about 3 weeks to go and it’s kind of down to crunch time. I tackled some parts of your room today. All I have to say is fucking fuck fuck fuck. I hated today.

I worked doing what I could do. Cleaning out toys you never played with, clothes you never wore, books you never read, I worked fast and hard sobbing with everything I touched. Your daddy helped and kept telling me that enough was enough for today. I told him no it was not, I still had a lot to do. Liam found me carrying some books out of your room, and sobbing so hard that I was shaking. He wrapped his arms around me but I couldn’t even uncover my face with my hands to fully embrace him. He ran off and got your daddy to tell him I was crying. At this point, I was back in your closest running my hands over your little worn out Uggs that you wore everywhere and pretty much destroyed in New York because you lived in them. I watched as your daddy tried to play the strong role, but he really looked like a deer in headlights as he stared at me with a look of disbelief in his eyes that I have not seen in a long time. I saw his heart break again today, right along with mine. Over and over again our hearts that sometimes seem to be alright, get shattered once again. The pain on your daddy’s face only made everything worse. I hate so much that he hurts just as much as I do. Your daddy never deserved this kind of pain. None of us did. None of us do. Nobody does.

I started to wash the clothes I have for Poppy. I sobbed with every sock of hers that I folded and every blanket that I washed. I hung up some of her things with your things in your closet. I live in a world of sadness and happiness. A world where your little hats and sweaters now collided with Poppy pink headbands and socks. I took out the dryer lint after drying some of Poppy’s things today. It was pink. WTF is going on? Never in my life have I had pink dryer lint because I lived in a world where having 3 boys is all I’ve ever known. How can this be? How can you not be here, really sharing a room with her? I picture it all the time. How much you would have loved having her in your room. I imagined you doing things like sneaking over to her in the middle of the night, to check on her or to try to wake her up because you would have loved her so much that you would have wanted to play with her 24 hours a day. I think of this and it only makes me sad. The only thing that helps with this is knowing that you have 2 older brothers here that will love her extra hard for you. I know your brothers are happy Poppy is going into your room. It will be nice for us all to have some life back in there again. Since your daddy won’t let me pack everything up to move out of the country, or even out of this house, I will make the best of this situation and compromise for everyone. Your daddy still can’t imagine leaving our house which is so full of the memories of you. I still struggle with being here because it only makes me miss you that much more.

I dropped your daddy and brothers off at a St. Paddy’s day party tonight. I didn’t feel like going. I still have a hard time functioning in the normal world and still have not learned how to put on a plastic fake smile where I pretend that everything is alright. I don’t go out very often anymore and I am honestly o.k. with that. Maybe someday things like big groups of people will be o.k. but for now, it still is not. To me it still feels like a world that is foreign to me and I am not ready to learn a new language quite yet. I still prefer my dark, underground world that I have made up in my head because I live in a place where sunshine and sweet singing birds surround me 24/7. I wanted to shoot those birds and blow up the sunshine today. Can’t somebody turn down this brightness just a bit? It is too much to ask for the weather to just cooporate with my mood on a daily basis? It is when you live in AZ. A world where I swear you can overdose on all the sunshine and happiness. Well, at least if you are a bereaved parent you can. I’m know the normals of the world, love it. I think I used to be one of them. I’m not anymore. Nor will I ever be again.

Alright my little spicy monkey. I’m sad, mad, angry and tired. I had a hard day. I am going to finish up a few more things in your room. I will forever be sorry it is this way. I love you. G’nite Ro baby.

xoxo

46 Comments
by rockstarronan on March 16, 2013  •  Permalink
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Posted by rockstarronan on March 16, 2013

http://rockstarronan.com/2013/03/16/the-pink-lint-in-the-dryer-made-me-cry/

That hair, that hair, that hair…

 

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Phoebe is on the left in this picture. Is her hair to die for or what? Big thank you to my little Rachel for making her day yesterday. Love you, Rach. You are the sweetest soul. Thank you all who have left such sweet comments on Phoebe’s page. Truly made my day.

Next up for Phoebe is a bone marrow transplant. Please keep her in your thoughts.


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

 

l.IFeyzAxBtsLmsyJc

6 Comments
by rockstarronan on March 16, 2013  •  Permalink
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Posted by rockstarronan on March 16, 2013

http://rockstarronan.com/2013/03/16/that-hair-that-hair-that-hair/

If you know anyone dealing with Neuroblastoma….

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Please pass this along to them. I found this about 2 months after Ronan was diagnosed and it became my bible. A group of parents put this together. I hope you all are well. We are alright here. Just trying to prepare for this Poppy baby a bit.

Love you all.

xoxo

http://www.cncfhope.org/cms_images/file_72.pdf

14 Comments
by rockstarronan on March 14, 2013  •  Permalink
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Posted by rockstarronan on March 14, 2013

http://rockstarronan.com/2013/03/14/if-you-know-anyone-dealing-with-neuroblastoma/

“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

photo

25 Comments
by rockstarronan on March 12, 2013  •  Permalink
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Posted by rockstarronan on March 12, 2013

http://rockstarronan.com/2013/03/12/do-it-for-ro/

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.



24 Comments
by rockstarronan on March 8, 2013  •  Permalink
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Posted by rockstarronan on March 8, 2013

http://rockstarronan.com/2013/03/08/i-love-you-3/

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