All posts tagged tears

2 years ago today, I went to Hell

tumblr_mkp5g3WD9P1rz6yk9o1_500

 

 

 

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

This slideshow requires JavaScript.

62 Comments
by rockstarronan on April 23, 2013  •  Permalink
Posted in Uncategorized
Tagged , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , ,

Posted by rockstarronan on April 23, 2013

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

I thought I was ready, but I’m not ready.

tumblr_mkkx5ofDeg1rnofw4o1_500

Ronan. It’s normal to sit partly naked on a table at your OBGYN’s office and cry, cry, cry while waiting for her to come in a check your cervix, right? I was really trying to avoid this today. I had my nose busily buried in a book that I was reading on my iPad, but somehow it was as if my hands were not my own anymore and the next thing I knew I was swiping my fingers across all of my pictures on my iPhoto only to be staring at you and your big blue eyes while I waited for Dr. Schwartz to see me. I can usually do this and be o.k. I mean, I look at your pictures all the time, but today looking at them left me with tears streaming down my face and wet spots all over my iPad. There you were in every picture, smiling your beautiful smile at me while I traced your mouth with my little pinky as if I were actually touching you. I listened to the voices screaming in my head that it couldn’t really be this way, that my darling, sweet boy, didn’t really die of cancer. The flashbacks began. The ones that forever haunt my mind. The way I watched cancer eat away at your little body, mind and soul. The pain that set in during your last week or so that I could not rub or kiss away no matter how hard I tried. Your sunken eyes, bloated belly, cold lips and stiff little legs. The pain that I now feel every single day and the sadness that never goes away. Now the harsh stares, un welcomed judgment about the grief that I carry around with me. The grief that nobody will ever truly understand but they sure can pretend as if they do while voicing their opinions about it while judging away. The baby sister that is now almost here that will supposedly heal my broken heart according to the world around me. It’s like the outside world thinks she is the magic pill that I’ve so been searching for but will never actually swallow no matter how hard they try to shove it down my throat. Those who know me well, understand my truth. Those who know me well, know that no amount of time, love or even a new human being will ever take away my pain of having to live my life without you and they don’t judge me because of that. It only seems to make them love me more. Those are the people I surround myself with. The handful of people that are not afraid to be a silent witness to this pain and only fill us with unconditional love. They lift us up not bring us down with their words of kind compassion, non-judgemental stares, and they are just so proud of us for still being here and being a loving family to one another. There are no expectations, no whispers of he’s in a better place, or she is doing everything wrong. I hear the whispers and I am very aware of who is doing the whispering. It’s like I have a sixth sense for those things and I have learned that the whispers will always be there, but I have a choice of whether or not I hear them. I mostly choose to tune them out because I know at the end of the day the proof is in the pudding and the pudding being your daddy, your brothers, and the amazing friends that have become family. Not to mention your Nana and Papa Jim. I always say I swear I could murder someone and your Nana would still say, “I am so proud of my daughter.” I know what it is like to be unconditionally loved, thanks to her. She has taught me a very valuable lesson through all of this. One that I could never repay her for or say thank you enough for. That’s the great thing about your Nana, too. After everything Ronan, after all of her love, support, strength, sadness, help… she would never look at me and say, “You owe me for this for all I have done for you. Or you hurt my feelings because you don’t pick up the phone. Or you are being selfish, rude and need to get over this.” She would never make this about her in any way shape or form. She is absolutely the most selfless person on the planet and I only hope that I too, am silently following in her humble footsteps. I know how much she misses you and misses me. I hope one day that I can start picking up the phone more like I used to when you were here. I am thankful that she does not take any of this personally because she knows that I am just doing the best that I can and to her, that is more than enough.

I cleaned myself up before Dr. Schwartz came into the room. I know I looked like a bloody mess as my entire face was blotchy and red. I was quiet when she came in to see me today and asked me her usual questions and went on with her exam. I told her how I have been getting sick again. Mostly during the middle of the night the throwing up starts. I won’t ever know if it’s your sister or my body’s way of reacting to my grief. I have a feeling it’s a little of both. She checked my cervix and measured my belly which is still measuring a week ahead of time. “O.k. it’s not going to be much longer now. You’ve dilated quite a bit. Let’s put you back in a room to see what’s she’s doing and watch your contractions.” I headed back out into the waiting room to wait for a room to open up. There was a girl out there, waiting with her little boy. I tried my best to avoid eye contact, but she smiled so I of course said hello. I was a wreck and listening to the little boy call out, “Mama!” was enough to make my eyes well up with tears as that is what you always called me. He was so cute but I refused to look his way as I knew what was going to happen if I did. I was doing a pretty good job of reading my book until his little car came flying at my feet because he had thrown it across the room at me. This made me laugh as I bent down to pick it up as it is so something you would have done. I returned the car to his mama and she shyly looked at me and said, “You’re Maya, right?” I smiled and said that I was. The girl told me how she has been reading my blog forever and how she actually saw me a couple of weeks ago out and about but didn’t want to come up and bother me. We sat and chatted for a bit while I tried not to get lost in the blue eyes of her little boy. She could not have been sweeter and told me how meeting me had made her day. I gave here a ziplock bag full of your bracelets that I just happened to put in my purse this morning. I knew there was a reason that I packed them. I don’t always leave the house with a bag full of your bracelets, but today I felt like I might need them. I’m so glad I was right:)

I finally got back to the room where my contractions were monitored and your Poppy sister was, too. Dr. Schwartz came in and read the results and told me due to my contractions, she wouldn’t be surprised if she saw me before Friday which means I could have your Poppy sister at any time. I thought I was ready for this but I think I’ve changed my mind. I’m not ready and I’m bloody scared as hell. The only part of me that is ready for this is my body. My tired body is more than ready to have this baby girl. My heart and my mind aren’t so sure. Can I do this doubts fill my head. Your Sparkly promised me that I indeed, can do this. I know he is right, but it doesn’t seem to be making things any less scary or sad. My excitement for your sister seems to have been put on hold due to the anticipation and emotional roller coaster of tears that will not seem to stop. I can’t seem to stop thinking about the fact that you won’t be here to hold her, love her, kiss on her the way I know you would be doing if you were here. I try to calm myself about this by letting my heart remind me that although you are not here, you will forever be watching over her, guiding her and protecting her in ways that only you can do. I would give anything for you to actually be here, teaching her all sorts of naughty things and causing all sorts of trouble but as I’ve learned the hard way, beggars can’t be choosers.

I’ve got to run, Ronan. Your Bri Bri aka, my little sissy is in town for orientation at ASU. Can you believe that? I don’t know where the time went as it seems like just yesterday I was bouncing her on my hip, watching her grow up and bounce Liam and Quinn around and then, you. Now she is all grown up and is finally going away to college to ASU. I’ve listened to her talk about ASU since she was 8 years old and how she would go to school there someday. That someday is almost here and I am so excited to have a little piece of our family in Arizona with us. Your brothers are thrilled. I know she is nervous but we are going to take such good care of her. I so wish you were here to be a part of this with all of us. You loved your Bri Bri so much. You two and your big blue eyes were quite the pair. I can’t wait for Bri to meet this Poppy girl. I know she is going to be so helpful with her the same way she is with your brothers. Best little sissy ever;)

I miss you. I love you. I hope you are safe. Sweet dreams, little one.

xoxo

P.S. I just wanted to say a thank you to all of you lovely souls who have been sending the sweetest little gifts, cards, and even a few Poppy things. I even got a little Poppy headband and matching socks all the way from Ireland a couple of days ago. You all are the most thoughtful creatures on the planet. Thank you for loving my little boy and our family so much. Thank you for letting Ronan make you the most beautiful people. It makes my very broken heart, skip a beat. I love you.

97 Comments
by rockstarronan on April 2, 2013  •  Permalink
Posted in Uncategorized
Tagged , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , ,

Posted by rockstarronan on April 2, 2013

http://rockstarronan.com/2013/04/02/i-thought-i-was-ready-but-im-not-ready/

Promises made, promises broken

tumblr_mjqcx6mwjc1qljfm7o1_500

Ronan. Yesterday was St. Patrick’s Day. One of my favorite holidays. We didn’t do much. Your brothers had baseball and basketball practice and we kind of just went along like it was just another day. Holidays are still weird for us and celebrating feels funny to me. I make sure to always stay off of things like Facebook during many of the holidays. Seeing everyone normal and happy still stings for me. Not that I would want it any other way for others, but it just makes me sad that things are not this way for us anymore. We all wore green. We went out and had a family dinner where we laughed a lot at the things your silly brothers said. There were some heavy talks too, mostly in the car ride to where we were going.

It was Quinn who was inquiring about things, like always. I know Liam wonders these things, too but I think he keeps his questions more to himself. We started talking about Poppy  a bit about what will happen when she is born. Quinn’s next question was, “Didn’t Dr. Jo’s baby die when she had her? Can’t that happen to Poppy?” Questions like this always make my stomach drop and my heart sad. Your big brothers should not have to know things like this at 9 years old. Your big brothers should not have to worry about things like this at 9 years old. I know that they do due to everything we went through and the world we live in now which is a world full of other kids with cancer and often times babies and kids die. As much as I try to shelter them from this world, it will forever be a part of them and shape them into the boys they are becoming. As far as I can tell, it hasn’t harmed them at all. They only seem to be becoming wiser, sweeter, and more compassionate human beings. If that were even possible as I swear to you they have been this way since the day they were born. I explained to Quinn what happened to Dr. Jo happened a long time ago. I did not tell him it still happens all the time in this day in age. Your daddy went on and on about Dr. Schwartz and how amazing she is and how she won’t let anything happen to me or Poppy. My mind quickly went to, I remember when we had a similar conversation with Quinn at 7 years old. “Is Ronan going to die?” he asked with his big beautiful eyes. “No way, Quinn. We have the best doctors taking care of Ronan. We are not going to let anything happen to him. We promise you, buddy.” Promises that we couldn’t keep, promises that were broken, but promises we fully believed in at the time. Your daddy really did swoop in and save the day by turning the conversation into fully being about what a great doctor  Dr. Schwartz is and what it is, that makes her such a great doctor. Both of your brothers seemed intrigued listening to what your daddy had to say. I exhaled a little and let myself get lost in his story, too.

I also got to see Teddy’s mom on Sunday. She flew into Phoenix to see Dr. Jo. She came over and we went out and had a very somber yet sweet lunch. Our entire conversation revolved around you and Teddy. About the choices we made with your treatments, about how we are still in utter shock and disbelief that our sweet boys, fucking died. Clarence was making the drive up to Sedona for a few days to have some time with Dr. Jo. I am so glad for that. I’ve been nudging her to come and see Dr. Jo for a while. She texted me today to tell me thank you because Dr. Jo is absolutely amazing. I just responded with, “I know. She’s unlike anyone on this earth.” I am so glad Clarence is here and taking some time for herself to talk about all of this. I am so glad Dr. Jo is the one helping her. After Clarence left Quinn came up to me. This next part makes me want to cry. I sometimes cannot believe I am having a conversation with a 9-year-old. “Mom. Is Teddy’s mom alright?”

I just looked at him and gave him a little smile and said, “I think so, baby. I think she is just a little sad.” He goes, “Teddy just died, right? I hope she is alright. Teddy always seemed so happy whenever I was around him.” (mind you Quinn met Teddy once but all he remembers is how happy Teddy was.) I told him that she will probably always be a little sad, the way we all are when we are missing you. How we will never stop missing you, but that doesn’t mean we can’t be happy, too. He looked at me and goes, “Are you o.k., mom?” Somehow I kept myself together and wrapped my arms around him and told him that I was o.k.  and thanked him for asking. Liam was sitting in this room listening to this conversation as well. I know he hears everything but he seems to let Quinn do most of the asking the questions. It’s like they have this secret pact. Liam wonders, Quinn asks, then they both know. It really is very sweet and special the little twin bond thing they have going on. I don’t know what they would do without one another.

Today your Aunties, Stacy and Fernanda came over with mission Poppy on their minds. They made me show them everything I have for your sister. We went over everything I don’t have, but need. We sat in your room for a long time. I sat on your bed, Stacy sat on the opposite bed, and Fernanda was sprawled out on your floor. I pushed back my tears a lot as we talked about you, your sister, your bedroom and I listened to Fernanda as she told me how far along I have come. She told me she knows it’s hard for me to see because I am the one walking this walk, but to them on the outside looking in, I have come such a long way. I can agree with her in a way but I also know that I don’t really have any other options. I won’t give up on you, therefore, I won’t give up on myself or this life that I am here trying to live the best I can. I know I could have chosen to self destruct. I know I could have ruined our entire family because I was so blinded by my endless amount of pain but that little voice in my head always went back to if you do x, y, and z, you will let Ronan down and you cannot let Ronan down. I always think about all the lessons you taught me in your short little life and I refuse to just throw them all away. I am here to use those lessons and do as much as I can with them. I will not waste your little gifts on my sadness that often weighs me down but somehow I always seem to find a way, to push it off of me and continue on. You were such a little fighter, how could I possibly not be as well? I promise I will always fight for you, my sweet boy.

Alright baby doll. This is all I can write tonight. Please continue to keep Poppy safe. We are all so excited to meet her. I miss you. I  love you. I hope you are safe.

xoxo

This slideshow requires JavaScript.

26 Comments
by rockstarronan on March 18, 2013  •  Permalink
Posted in Uncategorized
Tagged , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , ,

Posted by rockstarronan on March 18, 2013

http://rockstarronan.com/2013/03/18/promises-made-promises-broken/

If you know anyone dealing with Neuroblastoma….

tumblr_mizxjlHqAP1rt9hgro1_500

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
Posted in Uncategorized
Tagged , , , , , , , , , , , , , , , , , , , , , , , , , , , , , ,

Posted by rockstarronan on March 14, 2013

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

I think I’m supposed to be nesting. I’m not nesting.

tumblr_mgjeygukYk1s2wbydo1_500

 

Ronan. I miss you so much but isn’t that always the case? I think I am supposed to be nesting now. That is the term used for when you get everything ready for the baby that is coming. I think I am avoiding nesting still as I cannot seem to get a single thing done. For instance, I need to wash all of Poppy’s clothes but instead they have been sitting on your bed for weeks. I keep telling myself today is the day that I am going to get it done, but then it doesn’t happen. Your daddy is so excited for your Poppy sister that it is almost making me mad at myself because I don’t seem to be feeling the level of excitement that he is. What’s wrong with me? He even has songs picked out that he has been practicing on his guitar and singing to and he’s calling them all Poppy’s songs. He’s been asking me if there are any other songs that I want him to learn, to sing to her. I think I responded with, “Can I tell you the answer to that, after she gets here?” I am just so sad that you are not here to listen to Poppy’s songs, too.

We were in bed the other night and out of the blue I said, “Do you think Poppy is going to die?” Your daddy just gave me his normal answer which is, “Why would you say that? She is not going to die.” I think I said something like, “Well Ronan was not supposed to get cancer and die and he did.” That is automatically where my brain goes. It’s not a fun place. It fucking sucks. In my previous life, morbid thoughts like this would have never happened. I know what part of my problem is. A certain part of my brain is trying to protect myself from becoming too excited/attached to Poppy still in case something happens. I wish it wasn’t this way, but there is nothing I can do to change this or control it. I wish I could just push these thoughts out of my brain but even I know I have to just give in and allow myself to think and feel these things. I would not be being true to myself if I pretended to be feeling any other way.

I’ve been keeping myself as busy as my tired body is allowing. Foundation things have been happening. I just had a meeting today that went great but I can’t say much about it as of now. We have some very exciting things in the works and I am so grateful for all of the people who want to help us change things in such a big way. We have not heard anything back from the White House but I promise to announce it when we do. We have the date set for our 2nd Annual Gold Party. It will be September 28th, 2013 so I hope you all will save the date for us. We are just getting started on the details and the planning of everything. I love all of the planning that comes with this. Brainstorming ideas is one of my favorite things. I was so proud of how it turned out last year and this year can only be bigger and better:)

I am trying to be patient with my last month of pregnancy but it’s no secret that I am so ready for your sister to be here. I am beyond full of anxiety and going stir crazy. I can’t take much more of having to be quiet and taking things easy. I just want her here and safe that way I can get back to kicking ass like I’m used to doing but this time with a baby on my hip. That sounds like bliss. I miss having a little sidekick in the worst way possible. I can do anything with a baby on my hip. I don’t do so well with the whole pregnancy thing…it’s never been my cup of tea. I do much better in the world of no sleep because you are taking care of a baby 24/7. That for me is a piece of cake and where I thrive. It’s one of my most favorite things in life.

I’m off and running now. Somehow I got talked into going on a little golfing excursion today which should be a riot seeing how I can hardly stand up straight due to carrying what I feel like is now a bowling ball in my stomach. It will be good to be outside getting some fresh air though.

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

xoxo

11 Comments
by rockstarronan on March 6, 2013  •  Permalink
Posted in Uncategorized
Tagged , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , ,

Posted by rockstarronan on March 6, 2013

http://rockstarronan.com/2013/03/06/i-think-im-supposed-to-be-nesting-im-not-nesting/

I have a chronic illness and it’s called sadness

tumblr_mipiftJDuk1r0i5hmo1_500

 

 

 

I had big plans today. HUGE plans. I had decided on them last night while I was in my bed, crying. I thought to myself, “Tomorrow I’m going to do nothing but stay in bed all day long.” I got up this morning, hopped in the shower and just as I was getting dressed for my “big day,” I got a text message from Stacy. It simply said, “Can you meet for breakfast?” I didn’t even hesitate as I texted her back, “Yes,” and plans were made. A year ago, I would have told Stacy in no way shape or form, could I possibly meet her for breakfast. That was the state of mind I was in last year. Things are different now.

I met up with Stacy and as soon as she sat down she said, “Fernanda is meeting us, too.” “Great!” I said. Even though she just had surgery, she still was popping in for our little breakfast which I was surprised by, but shouldn’t have been since her nickname should be freaking Superwoman. I sat and caught up with my friends and our breakfast ended up turning into a two-hour meal/discussion/sob fest. I listened as Stacy and Fernanda talked to me about some things they know I am struggling with. Mostly about the last week or so of your life. They told me they know how I am regretting not having you die in our home and I listened as they both explained to me why it was that we were encouraged to take you to the Ryan House. I hadn’t really ever heard this from them before. They talked about how scared they were that you were going to die this awful, painful death by basically drowning on your own blood. How for many kids that die of Neuroblastoma, this is what happens. It is usually a very painful and awful death. They talked about how they didn’t want your blood, all over our house. I listened to them, understood and now I feel like I can let this little piece of my guilt go. I do not blame anybody for pushing us to take you there. I know my friends only had our best intentions at heart as they always do. We all sat and cried talking about this. I said something about I only have the guilt because you begged me to go home and I feel like I didn’t answer your one little dying wish. Nobody knew you were going to die so peacefully the way you did. Nobody knew you were just going to fall asleep. I looked up at the girls and one of them, I can’t remember who goes, “But Maya, don’t you think Ronan’s home was wherever you were?” I nodded my head in response. We talked about some more things as we continued to sit and cry at the table.

I told them about the chapter for this book that I am supposed to be working on. I told them about what it is I was thinking about writing about. I watched as the color drained from Stacy’s face. “You can’t write about that right now. You are going to give birth soon. You cannot write about that.” Fernanda’s eyes welled up with tears. “You need to listen to your gut, Maya, but do you really want to write about that, now?” I told them I was having a hard time working up the courage writing about this part of my life, but it was the only thing my mind kept going back to. I listened to them both and their advice. I left our breakfast still unsure about taking on this chapter but I could not think of anything else that I could connect with to write about. I ran a couple of errands after breakfast and cried almost the entire time in the car. I came home and made a decision to head up our mountain to go hiking today. I can’t take another day of not doing a thing, exercise wise. I put on my clothes, threw on your little backpack and off I went.

I didn’t wear my headphones or blast my music while I hiked. I listened to my head instead. I listened to you. I took it slow up the mountain to keep your Poppy sister safe. I felt my head become less foggy. It was as I was coming down the mountain that I decided what I am writing my chapter about. It suddenly came to me so clearly just the way things always do when I am outside, exercising, and listening to myself and you. It felt so good to be free and clear with my thoughts flowing non-stop. I’ve said this from day one; nothing good will ever come from me hiding in my bed. I cannot change the world this way and for sad as I am and for as much as I want to hide, I can’t. Because if I hide then I die and I really don’t want to die anymore.

I said something to your Sparkly yesterday that has been bugging me to pieces. I told him I was working on being less sad. Saying that left a bad taste in my mouth and I have been mad at myself ever since. I texted him today as I was going up the mountain and told him that I had decided that me saying I was trying to be less sad, was bullshit. That my sadness is like a chronic illness. It’s something I’ll always have and it will always be a part of me. I have to accept it, stop trying to change it, and learn to live with it. I will never be able to get rid of my sadness but I can learn to manage it. Managing it for me will come in many different forms and I am slowly figuring out the “medication” I need to treat my sadness. No, not real medication. My medication. The things that work for me and help me through this life. Things like exercising, nature, writing, helping others, surrounding myself with the kind of people who build me up, not beat me down, and trying to live a life you would be proud of. That’s my prescription. It may not be prescribed by a real doctor, it may not work for everybody, but it works for me and that’s what I’m sticking to.

I’m tired from today and the hiking wore me out, but it made me feel good as well. I’ve missed our little mountain so much. I see Dr. Schwartz tomorrow so she can check up on this baby sister of yours. Please keep her safe and sound for me, Ronan. I miss you. I love you. I hope you are safe. Sweet dreams my spicy little monkey.

xoxo

 

27 Comments
by rockstarronan on February 26, 2013  •  Permalink
Posted in Uncategorized
Tagged , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , ,

Posted by rockstarronan on February 26, 2013

http://rockstarronan.com/2013/02/26/i-have-a-chronic-illness-and-its-called-sadness/

This explains why I will never support the American Cancer Society. They do nothing for our kids except use them. Making money off of our kids for your huge salaries!?!? NOT COOL!

tumblr_milhchTAGl1r34ep1o1_500

http://www.huffingtonpost.com/jonathan-agin/friends-dont-let-friends-_2_b_2759403.html

7 Comments
by rockstarronan on February 26, 2013  •  Permalink
Posted in Uncategorized
Tagged , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , ,

Posted by rockstarronan on February 26, 2013

http://rockstarronan.com/2013/02/26/this-explains-why-i-will-never-support-the-american-cancer-society-they-do-nothing-for-our-kids-except-use-them-making-money-off-of-our-kids-for-your-huge-salaries-not-cool/

I miss you and normal still hurts.

tumblr_mgba04Ybll1qbqtjbo1_500Ronan. Things around here have been quiet. The quiet that is so hard for me. A normal quiet that still makes my skin crawl. You know the normal things that we used to do when you were here. Big breakfasts, family dinners, going to movies, playing sports, watching T.V. as a family. Things like that. I thought they would have gotten easier for me by now. I guess they have because I know I used to not be able to engage of in any of those things and now I find myself being able to do so. It still stings though. I still picture you missing in every single thing that we do. Your brothers had a play date this weekend. I happily sent them up to road to play at a friend’s house. I caught myself thinking, “I wonder if Ronan would be going with his brothers, walking up the road to play.” I pictured the image in my head and it broke my heart all over again that you are not here to do so. Some days I think my heart will heal, but it’s things like that where in an instant, my heart is shattered all over again.

Your brothers seem so happy. This will always be the way I can tell that I am an alright job in life. It will always be reflected in the ways that they are. They are happy, well-behaved, and so connected with us. I am amazed at the way our family has been able to stay so intact and connected. I sometimes wonder if it’s weird that your brothers, for the most part, are always with us. They go to play dates here and there, but for the most part they are with me and your daddy pretty much all the time. We spend a lot of time together, doing things as a family. We both have worked so hard to make sure your brothers know they are safe and loved. I think for a long time they both worried about if they were safe or not. I watched as their innocence was shattered and taken away. I feel like we have slowly put it back together for them. Last night Quinn fell asleep in bed with me. We were watching the Oscars and I was rubbing his back. He fell asleep soon after that and I kept him in my bed with me and held his hand as I fell asleep. Just like I used to do with you. I found your daddy in Liam’s room all snuggled up in bed with him. They were both asleep on their backs and Liam was sleeping on your daddy’s arm, just they way you used to always do with your daddy. The sight of this was so bittersweet. It was so beautiful but so sad as well. I then went back to my bed while passing by your little cold, empty room. A year ago I would have taken 5 Ambien after seeing this sight. That thought didn’t even cross my mind last night so is that a clue that I am doing better? I guess so.

I went to see your Sparkly today. The first thing he said to me was, “What’s going on with Dr. Jo?” I gave him a funny look and asked him why he asked me that. He said, “Because I’m worried. I haven’t heard you talk about her in a long time and you normally won’t shut up about her.”

He knows I have been slacking on my therapy. I gave him a little smile and told him he would be happy to know that I have been seeing more of her and I started telling him about some of the things we have been working on and doing. I told him about the little project Dr. Jo is having some of my close girlfriends work on for me. I was in her office a couple of weeks ago and I was telling her how I am so traumatized by everything that I am having a hard time remembering any of the good things about your life here, Ronan. All I can think about is your diagnoses, how awful everything was, and your death. She asked me if it would be alright to reach out to a couple of my friends and ask them to do a little project that she thinks might help me. I told her she could get in touch with Fernanda and Stacy as they knew you and know everyone around us who knew and loved you. Dr. Jo said she was going to have them ask our family and friends to write down little memories of you to keep in a box at our house that way we can go through them and read them whenever we want. It’s such a simple and sweet idea. I don’t know if it will help or hurt but I’m willing to give it a try. Dr. Jo is also trying to get me to write you a letter. I know I write to you all the time, but she wants a real letter written to you. A deep letter, a heartfelt letter, baring my soul. She’s been asking me to do this for I swear a year now. I tell her I think about it a lot, but I’m not ready to do it. She knows why. She thinks in this letter I will find that you have forgiven me for everything. Even though nobody thinks I did anything wrong, not even you. I still feel like I did something wrong because you died and I am not ready to forgive myself. I still like living in that place of deep torture and pain because I feel as if I deserve to feel this way. Someday I might be able to let this go, but I’m not ready yet. It’s like if I let that go, I’m letting a little piece of you go and I don’t want to let any of you go. Ever. Including my self torturous pain that I like to feel because at least it means I am feeling something. I’ll take feeling something any day over being numb or even worse, happy. How do I ever have the right to be happy again when you are dead? I’ll take my moments of happiness in life but I don’t imagine ever being able to go back to a life where happiness filled me 24 hours a day like it did when you were still here and our family was still all together. I can be happy with my moments of happiness because when I feel them, I am fully aware of them and I appreciate them so much more than I used to.

Your Sparkly asked if your Poppy sister is ever going to get here. I pulled out her latest ultrasound pictures to show him and I watched him as his eyes lit up and he let out that great chuckle of his. In one picture, Poppy has her leg pulled up all the way to the top of her forehead. Limber little thing. He said he knows she is going to be the most beautiful little girl. I just want her healthy. Forever Ronan. Nothing else matters. I told him all about her hiccups and how it was the sweetest thing to feel. Not much longer now. I think I start seeing Dr. Schwartz every week starting Wednesday. I cannot wait to have this little one here. We all need this little piece of life to place in our family again. We all need this little gift from you. I know you know how much. I promise she will grow up knowing all about you. How you are her big brother. Nothing will change that.

This is all for today little man. Time to get dinner ready for your brothers as they will be home soon. I miss you. I love you. I hope you are safe.

xoxo

 

A RoLovie sent this to me. Poppy and you, side by side. I love you. I love my RoLovies, too.

A RoLovie sent this to me. Poppy and you, side by side. I love you. I love my RoLovies, too.

 

21 Comments
by rockstarronan on February 25, 2013  •  Permalink
Posted in Uncategorized
Tagged , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , ,

Posted by rockstarronan on February 25, 2013

http://rockstarronan.com/2013/02/25/i-miss-you-and-normal-still-hurts/

Voting doesn’t end until February 24th and you can vote once a day! Thank you! xoxo

166765_381724965259691_1830074330_n

 

 

 

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

7 Comments
by rockstarronan on February 20, 2013  •  Permalink
Posted in Uncategorized
Tagged , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , ,

Posted by rockstarronan on February 20, 2013

http://rockstarronan.com/2013/02/20/voting-doesnt-end-until-february-24th-and-you-can-vote-once-a-day-thank-you-xoxo/

A Rock and Ro Marathon and The Day Dr. Sholler Almost Died

tumblr_mh1ne1Wrod1rp9mt7o1_500

 

 

Ronan. This was another whirlwind of a weekend. So much so that my body/mind hit a wall today and I almost passed out at the dentist’s office where I had to take Quinn to get his first filling. I have never been through a pregnancy where I have been this busy. I have never felt the level of exhaustion that I am feeling. We made it through Quinn’s dentist appointment and I got us home and went straight to bed for the rest of the day. As much as I didn’t want to do this… I also do not want to go into labor anytime soon so I made myself listen to my body and your Poppy sister. My body is acting like it is pissed off at me and screaming at me to slow down. Ugh. I do not do well with slowing down.

I spent the weekend gearing up for all things marathon. Dr. Sholler was in town so much of the weekend was spent with her which you know I loved. I had the chance to introduce her to Dr. Jo. One of the highlights of my life! Getting to spend time with the two of them, together was really amazing. They both deserve the noble peace prize as they are two woman who are doing extraordinary things in the world. We had a nice dinner at Chelsea’s Kitchen, your favorite restaurant. You had the best taste for a 3-year-old. I miss taking you there, so much. After our dinner we had to run over to California Pizza Kitchen as they hosted our “Carb Load,” night before the race. So awesome of them to do. I had the chance to meet many of the people who came in from out-of-town to run for you. It was so amazing to hear where everyone was from. I met people from all over and could not get over how many out-of-town runners we had. You are inspiring so many people, Ronan and it really is amazing to see.

The next morning, I got up super early to head down to the race. We had a booth set up at the end of the race and I wanted to be there to tell our runners thank you despite how tired I felt. I am so glad I went and spent the day and was able to meet some of your RoLovies who ran for you. I had a family who decided to skip their trip to Disneyland this year so the dad could come and run the full marathon for you, Ronan. Can you believe that?! They had 3 kids, and they skipped Disneyland this year because running for you meant so much to them. I don’t even have words for that, only tears. I had one girl who ran with your pictures on her back. Oh.My.God. I really tried my hardest not to cry about this, but it was no use. I was bawling. She was bawling. Becca was bawling. Stacy was bawling. Melissa, too. Our rad junior board, was also in a hot mess of tears. (Hi! Yes, we have a junior board now. It’s not official or anything yet, but they are LEGIT. Thank you girls for all your help) Dr. Trent from TGen ran for you, Ronan. I adore that man. I was so excited for him to be doing something so wonderful for you. Dr. Sholler had a great time running for you. I know I say this over and over and over, but I cannot even explain how amazing she is. I wish so much that she would have known you. I’m trying not to play that little game in my head that I often do called, “Ronan would still be here if…” If Dr. Sholler had taken care of you. I don’t know if this is true. I hate the fact that I will never know. What I can do is work with her, support her, tell everyone I know about her, so that I can help her do the only thing she wants to do which is save kids lives who are here now. As Dr. Trent put it on the night we all had dinner together, “Many people talk the talk, but do not walk the walk. Giselle walks the walk like I’ve never seen anyone before. And she gets beaten up for it sometimes. She is a pioneer.” She is indeed a badass pioneer who will change the face of this ugly disease. And she will do it in a way where you know she is not just another mad scientist playing God. She truly cares about the patients she is taking care of, as much as her work if not more.

We might be the first foundation to have almost killed our dream doctor, by the way. I was not a part of this, but between my two board members, Stacy, Melissa, and Dr. Sholler, they had quite a story for me. After the race, Dr. Sholler needed to get back to her hotel. I could not take her as I didn’t have a car and was still needing to stay at the event to tell some people thank you. I put the precious life of Dr. Sholler in the hands of my two very responsible friends and board members. The walk back to the car was long and one of those rickshaw bicycle guys was peddling around. The 3 of them decided to hop in so they wouldn’t have to walk so far to the car. Rickshaw bike ride gone bad! From the story I got a traffic light turned red in a major intersection and the bike guy decided not to stop, but to speed up! I know all 3 of them saw their lives flash in front of their eyes and Dr. Sholler was almost thrown from the bike. I about died when I heard this story. I cannot imagine if something would have actually happened. Stacy has decided we need a reality camera to follow us around at all times due to stuff like this always happening. It is so true. Even at our most serious times, funny things seem to always be surrounding us. I tell myself a lot that it is your way of reminding us not to forget to laugh once in a while even though what we are doing is for a very sad reason. You know we need a lot of laughter to help us through this, otherwise it would be a constant stream of tears. I am very thankful that we can look back and laugh at the little Rickshaw bike ride and nobody ended up being roadkill. Geez. Thank you, Ro!

I had a dream about you the other night. You were sick but instead of cancer, you had some gashing wound on your head. I didn’t care. I was just walking about the hospital, talking to your Mr. Sparkly Eyes all calmly like nothing was the matter. I, of course knew you were dying, but I was just thankful to have you in my arms. As soon as I woke up from that one, I fell back asleep and dreamed of your Poppy sister. Your Sparkly was in this one too. It seems to be a pattern whenever my dreams involve you, he is always there. In my Poppy dream, she was about 3 or 4 and looked so much like you. Your Mr. Sparkly Eyes was chasing her about and they were both laughing. Her little face looked so much like you. I woke up from that dream, smiling. I can’t wait to see this in real life. Your Sparkly is just as excited for your baby sister as I am. A lady passed us the other day, carrying a infant carrier and he just looked at me and said, “I can’t wait for that to be you.” I know why. He knows how much I need your sister. He knows I need to smile more and he knows she is going to help so much with this. He is right. As always.

Alright little man. I’m going to end this before your brothers get home. I miss you. I love you. I hope you are safe.

xoxo

P.S. Dear Rock and Ro Marathon Runners, Donators, and Helpers,

Thank you. Truly. What an amazing thing it is to see the way Ronan has impacted your lives. So much so that you are letting him make you the most beautiful, selfless souls that exist. Thank you for believing in him so much that you have allowed your lives to be changed, for the better. It is one of the most beautiful gifts that he has left. I am so thankful and honored for all of you. I can’t wait to see you all next year and run the race with you.

Magic Meg. You forking rock. This was all you. Thank you for taking over and making this marathon such a huge success. This would not have happened without all of your badass hard work. Ronan thanks you, too. I love you.

P.P.S. We are accepting donations until January 31st so feel free to keep them rolling in! Thank you all.

xoxo

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

9 Comments
by rockstarronan on January 22, 2013  •  Permalink
Posted in Uncategorized
Tagged , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , ,

Posted by rockstarronan on January 22, 2013

http://rockstarronan.com/2013/01/22/a-rock-and-ro-marathon-and-the-day-dr-sholler-almost-died/

« Older Posts
Follow

Get every new post delivered to your Inbox.

Join 21,199 other followers

%d bloggers like this: