I feel, therefore I am

 

Ronan. This is just how things work now. When things come to me, they just come. For almost a month now, I’ve been hiking my butt off. Worrying about your birthday and what it is I wanted to do. Pressuring myself to figure things out. Some days, ideas came. Other days nothing came at all. I tried not to get too frustrated with myself. Nothing felt good enough. Nothing felt right. Nothing could hold a candle to making this day as beautiful as it should be. As beautiful as you are. I stopped thinking so much. I felt instead. The Phoenix Children’s Hospital plan came together slowly. But I knew there had to be something else. I knew your birthday had to be something that everyone could share. Your love can do so much good. Your love will do so much good. Your love will change this broken world. I know this.

I sat at Dr. JoRo’s office for most of the day. She was not there but let me use her office so I could work without having to be at home. I cannot work from home. It is too painfully quiet. I sat in her office and worked away. It felt cozy and safe. I turned on my computer screen and my hands starting writing away. The words for your Ronan’s Day of Love flyer flew of nowhere. I texted your little LoRo. I asked her if I gave her the verbiage, if she could put together something for me to help spread the word about the day I was wanting to create. She said of course. She was so happy to do it. I was so thankful to have her to ask. It was done within minutes. It is darling. It is sweet. It is pure and came from my heart. It came of a place of feelings not thoughts. I didn’t have to think when I wrote out my words. I often don’t. I don’t usually think when I write on here. I feel. Your day of love came the exact same way. By feeling and that’s it. I felt alright. I felt so much that I spent much of the day sobbing on the floor of Dr. JoRo’s office. I spent much of the day, sobbing over emails, text messages, and writing in my journal. I sobbed over thinking about how wrong everything is, but how right so many things are becoming. It seems everyday I am flooded by words from people about how you have changed them for the better. It seems as if everyday, someone is out in the world, doing good because of you. It is bittersweet to see all the wonderful ways you are still here. I only want you here but as we said before, that simply cannot happen. I will take you in the only way I can now. By feeling you when I do. By watching you change things for the better. By trying harder at everything I do when I really don’t want to do anything at all. By trying very hard, to fix myself because I know that is what you would want. I know you want me to be happy. I know you don’t want me to hurt this badly. I remember your last words to me. You yelled at me. I was crying. You said, “Don’t be sad!!!!!!” I hear your squeaky little voice telling me this. It is so hard, not to be sad, without you. Do you know, every time I laugh, I feel you. Every time I smile, I feel you. My laughs and my smiles are not my own anymore. They belong to you. They will always belong to you.

I’m tired tonight. But I wanted to stay up until midnight because it is someone’s birthday. This someone’s birthday that has been one of the most unexpected gifts to come out of all of this. This someone that I often sit back and think to myself, “If Ronan had not gotten sick, I may have never met this person. I cannot imagine my life without her. I am so lucky.” I call myself lucky when thinking of her. I call myself lucky because I know it was you, that put her in my life just at a time when I thought I was drowning the most. You threw me a life raft and it was her. She likes to be undercover. She likes to be behind the scenes. So all I am saying is a big HAPPY FUCKING BIRTHDAY, to you know who you are. Margaritas to come later over mucho chips and salsa. I heart you. And your little dragon too.

G’nite. Sweet dreams. I miss you so very much. I love you. I hope you are safe.

xoxo

 

 

Ronan’s Day of LOVE

Ronan. I drive home. Alone. In the silence. With your blanket on my lap and your ashes around my neck. Blinded by my tears. I know what I am coming home to. An empty house. I pull into our driveway. Your bedroom window is the first thing I see. Your blinds are open. Everything is just the way you left it. Your room has not been touched. Your clothes are still in your drawers, your closet is filled with all the things you never even got to wear. The hand me downs from your brothers, in bins in your closet. You should be playing in your room. You are not. I hold my breath. Wishing for time to be reversed. I remember everything about this time last year. Everything from the text messages I sent, the phone conversations I had on the patio, to way you told me you loved me to the moon and back, how even though we were at the Ryan House, I did not think you were going to die. Nobody would be so cruel, to make us be apart, right? Who would do such a thing?

Somebody. Somebody did and now May is here. As of today, I only had 9 days left with you. Just 9 days. What would I have done differently, if I had known I only had 9 days to spend with you? I would have not slept. I would have told you over and over, how much I love you. I would have told you over and over, how proud I was to have you as my son. I would have told you over and over, how lucky I was to have you for the almost 4 years that I did. I would have told you how sorry I was. I would have kissed your lips, your fingers, your toes, a hundred thousand times. I would tell you how hard I will work for the rest of my life, to help others because that is one of the few things that is going to get me through this. My soul does not belong to myself anymore. I gave it up the second you left me. You took it with you. I don’t want it back. I know you are keeping it safe for me. I wish I would have had some poison to drink with me. The second you took your last breaths, I could have taken the poison and drank it too, so I could have died with you. So you wouldn’t have to be alone, without me. Like Romeo and Juliet. Only we loved each other so much more than they did. I’m sorry I cannot be with you. It is so wrong, Ronan. So very wrong.

I need you. I cannot do May. I said those words tonight. I know you heard them. I know you saw me. I’m sorry if you saw the pain in my eyes, the hot tears that ran down my cheeks, the way I said, “No, no, no,” over and over again as I clung to the one thing that makes me feel closest to you. Please make May go away. Please bring him back. Please. I cannot do May.

But May is here. There is no stopping it. I would have sent out your birthday party invitations now. We would have had an awesome party. Anything you wanted. I’m sure it would have been Star Wars related. I wonder sometimes if you would have ever outgrown your Star Wars phase. Now, I’ll never get to know because to me, you’ll love Star Wars forever. May 12, you would have been 5. That seems so big. You would have been such an amazing little 5-year-old. I’m still going to plan your party, even though you are not here. I’m calling May 12, 2012 Ronan’s Day of Love. We are doing something very special down at Phoenix Children’s Hospital to make some very sick sweet kids, smile. It’s exactly the way you would have wanted it to be. It’s going to be a very special day down there all because of you. I cannot be there. Not this year. It’s too much. I’ve got our lovely little board members handling it all as well as my intern Rissy and your Liz. They will do a great job.

So, Ronan’s Day of Love. I’ve come up with a few ideas. I think we should all wear purple for Ronan’s Birthday. It’s such a great color. I really loved all of the balloons for his birthday last year. Purple was his favorite color so if you all want to buy purple balloons and let them go, that would be so sweet. Any color would be fine, but purple was his favorite. I loved seeing all the pictures from it too, so if you want to snap the pics and email them to me, that would be nice to see. Any donations to his foundation are always welcome, of course. We are getting pretty close to getting Dr. Mosse’s trial funded. This Marathon of Madness has brought in some good money and we are so thankful for all the support. I’m not done planning Ronan’s party but I’m getting tired. One more thing that I can think of that I would like you to do is grab your child, children, sister, brother, friend, aunt, uncle,…. whomever you are closet to and say these words over and over to them…,”I am so lucky to have you.” I used to say those words over and over to Ronan all the time. And now I’m not so lucky, because he is not here for me to hold and tell him how lucky I was. I always knew. Everyday with that child was such a gift. A gift that I will never understand why it had to be taken away. I will never accept all that he went through and his death. I will carry that anger and pain with me for the rest of my life. It’s mine to carry. It’s a part of Ronan. I’m not letting that go.

But I have to go now. It’s been 2 weeks without Ambien. After tonight, I had to take one. Sometimes the screaming in my head and the tears just won’t stop. Somethings I have to say enough. I’ll be surprised if this post even made sense. I do some weeeeiiiirrddd shit on Ambien. Thank god I have no desire to go and drive a car. Tent City, here I come! Bucket list Rita!!!

G’nite Ro baby. I love you to the moon and back. You are my best friend. You were the best thing that has ever been mine. I miss you. I love you. I hope you are safe.

xoxo

A painfully gracefully clumsily beautiful existence

Ronan. I had a rough sleep last night. I think there was a lot of tossing/turning/punching pillows involved. It was 1:45 a.m. when I pretty much said FUCKTHISSHIT and popped an Ambien. Hate it. But sometimes the silence of nothingness is needed. More so than not lately. Nights have been more brutal than they normally are lately. Nights are when the cries from you to me and me to you, scream the loudest. Nights are never quiet.

I got up today, running on the little sleep I had gotten, but I had a lot to do. Too much to do so I went into tunnel vision to get everything done. Foundation things. I had a meeting at Phoenix Children’s Hospital that I needed to prep for too. Prepping came with basically giving myself a pep talk and telling myself how I would be brave today and talk about you, without sobbing like a baby. Prepping for today came with a lot of,”You can do this. For him. He would love this.” Rita met me down at PCH. I was waiting in the lobby for her, busying myself with doing things like cleaning out my purse. Busying myself with a lot of things to distract myself from crying. I don’t have a problem with being at PCH. I’m down there a lot still. I had a problem with the reason I was down there today. I didn’t want to be there, without you, asking for permission to do something for your birthday, and you are not even here to celebrate it. I wanted to be down there, with you holding my hand, doing something for your birthday and celebrating the fact that you were here and we together, wanting to do something nice at PCH because we were so lucky to still have you. I fought back my tears today and bravely did this without you. I sat in a conference room with Rita and clumsily/gracefully talked about your upcoming birthday and what it is, we would like to do, to honor you. I am used to hearing the word no a lot now. I am used to getting met by skeptical glances and it usually involves a… “Well if you want to do this, you have to check off this box and this box and this box, to have it done.” I am used to having to work/fight for everything in life. Today, none of that existed. I was met with a big fat, “We love this idea! We love everything about it. We will do whatever it is, you like. How can we help/what can we do/how would you like to see this idea, happen all the time in Ronan’s honor!” I was quite simply shocked. I think Rita almost fell over in her chair. This was not what either of us, was expecting. We left there stunned but smiling. We went for tacos afterwords and talked where we talked about your birthday and how we are going to execute the ideas that we have. We are going to make it a very special day for a lot of kids. I know it would make you smile and so happy.

After I left Rita, I drove to your brothers baseball game. I was feeling alright. I arrived to the game and just as I was sitting there, thinking about an email I was supposed to send today, in regards to an event I am trying to pull off for you in September, a little text message popped up on my phone. A little text message from the person I was going to email, but did not. I read it, sat with it, and the tears started pouring. I don’t want to go into details about what the text message said as it’s not important. I’ll sum it up with a little Taylor Swift lyric instead…one of my favorites. “Don’t you worry your pretty little mind, people throw rocks at things that shine.” I was crying for about 10 different reasons during that moment. 1) Because baseball games are hard in general. 2) Because I miss you. 3) Because this little text messaging person, blows my mind 4) Because I am so thankful that truly good people in the world, like her, exist 5) Because the stars are aligning, right before my very eyes 6) Because just when I start to doubt myself, this person always seems to know it and reminds me that she believes in me and you 7) Because I am so about letting things just come about/not push them and this was a huge reminder/sign to me to continue to do things, this way. There are a few more reasons for my tears, but I don’t want to go into them. Mostly it was just a huge fat thank you, Ronan. For reminding me that you are still here, working away during the times when I feel the most defeated. Or tired. I told your Sparkly eyes that I was just freaking tired of everything. I was quickly met with a, “So what? That’s bullshit. You’re tired? That means nothing.” He is one of the few people who I allow to slap me in the face and I don’t become defensive or feel offended. I am able to step back, assess the situation and say, “You are right. I am acting like an asshole and I need to knock this shit off.” I am learning to let myself take little breaks here and there, but I will never give up on you. I will work as hard as I can, to make some things in this mad world, right.

You know what else you are doing for me? Or should I say, this grief is doing for me? It’s making my heart bigger than ever. I did not know that was even possible, but it is. There are things now that I just cannot look away from. I want to save/help everybody. It’s helping others, that is saving me. Dr. JoRo told me this after a few times of seeing her. She talked about how my heart, would eventually start to turn outward again. I remember being in a fog, listening to her words, but not really understanding what she was saying. My heart would turn outward and grow bigger? Not possible. It is black, broken and shattered into a million pieces. I am starting to understand what she has told me, from the beginning. I’ve always believed her, but I think until now, I wasn’t truly ready to hear what it is, she was telling me. She is so freaking humble. I talked to her today. She is still on her trip and just found out she is getting some huge/really big deal award for being what I think should be called, “The Most Amazing Woman Alive on the Planet Award.” I listened to her talk about it like it was not really a big deal, even though it is. She would never come out and say that because that is just how she rolls. I tried to tell her it was a big deal, that she deserves this for everything she is doing. I was met with a, “Maya. That’s the thing. I’m not really doing anything except just being with you. Just holding your hand as you do this. All I am doing is sitting with you while you feel this, while you go through this, while you find your way.” I wiped the tears off of my cheeks. I told her that what she was doing, was walking through this with me in a way that nobody had done before. By truly listening. By speaking for me when I cannot, even if it’s not saying anything at all. By NEVER judging. By NEVER pushing. By NEVER expecting. By NEVER telling me I am doing this wrong. By NEVER lessening my pain. By never trying to numb my pain by shoving 10 different pills down my throat. By never saying, “Oh, I lost a child too, so I TOTALLY get it. By never telling me it’s time to get over this/move on. By never comparing her pain to mine. By NEVER using the words, “Well at least you have these things/people to get you through this. By never using the words, “You should be grateful for the things you do have.” By never telling me this gets easier. By never giving me false hope. By being brutally honest about how fucking awful this all is and she cannot fix it. She cannot fix it, but she will forever be here to watch me as I do, as I am the only one that can. And finally, by believing and me and trusting me, even when I do not believe or trust in myself. She always does. I know she always will too. She is one of my biggest reasons for continuing to fight as hard as I do. When I grow up, I want to be just like her;) She is beyond inspiring, Ronan. She reminds me a lot of you. She reminds me a lot of me, too. So much some days that I can see my pain, in her eyes. But the thing with her is it never hurts to look at her eyes, full of all of my pain. When I look into her eyes, I see a quiet strength that makes me feel the most at ease. It’s like I can breathe for a bit.

Guess what I did tonight? I did not get to hike today due to my busy day of getting shit done. I was quietly panicking in my head about it. I took Liam out tonight to grab a bag of ice for your daddy. It was dark. It was late. I drove the two of us, to our mountain. “Liam. I didn’t get to hike today, buddy. You want to go with me really fast?” I was met with an, “Ok mom. But I don’t have shoes.” I quickly told him no problem, that we could just go barefoot. He was so excited. “Good thing I have tough feet, mom.” Tears sprung to my eyes. “Yeah buddy. Good thing. I do too, so we will be alright.” We hiked, barefoot, in the dark together. He talked the entire time. We didn’t go to the top but that was not the point. We went as far as we could with bare feet/no flashlight like we didn’t have a care in the world. We bonded. We laughed. We missed you. It was a very sweet hike with a very sweet boy. I bawled like a baby over it and the fact that we were simply doing that crazy thing, because you are dead. If you were here, I would have never been on a mountain, holding Liam’s hand with bare feet and a broken heart. But I was. And I am. And I will continue to be for the rest of my life. This is just the way it is now. This is just the way it will always be. This grief/pain will never leave. I can’t have you anymore so this is what I am left with. A beautifully, painful life. I am noticing that the amount of beauty that I see in the world is endless but so is the amount of pain. They both seem to go hand in hand, everywhere I look. They are never without each other. It is as if they are best friends/worst enemies. You cannot have one, without the other. I wonder if other people notice this or if it is just a bereaved parent thing. I think my friend Rita sees it all the time, as well. Maybe this is one of the reasons I like her so much. That and she is funny as a mo fo. I cannot contain laugher/her snarky ways when I am around her, kill me. Like in an I almost pee my pants kind of way. Laughter truly is the best medicine. I need a lot of it. She is good at providing it. Plus, sometimes she makes me feel like I am being funny and making her laugh, too. So sometimes I feel like it’s just not a one way street;) YAY ME! I can still be kind of funny, when it comes out naturally. I only do this with the people I feel most comfortable around. It’s a weird introvert characteristic of mine.

Alright babydoll. Turing in for the night. Ambien I hate you but I have to sleep is here. G’nite baby doll. G’nite sweet friends. I miss you, Ro. I hope you are safe. I love you.

xoxo

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There’s Beauty in the Breakdown

Ronan. Did I say that I was in solitude last post? I think I remember something like that. Grrrr…not happening. Turns out, if I really want to go into deep hiding, I’m going to have to abort cancer fighting mission. And that’s not happening. I think I wrote to you last on Monday. Your 11 months fucking shitty asshole day. The week has flown by and I’m not even sure what I’ve done. I’ve hiked every single day, since I started my Inferno Hiking Challenge. It’s kind of sort of, AWESOME. I guess that’s where I’ve done all of my quiet time/solitude. Turns out, I really may need to go to India to a Buddhist Meditation retreat to get some serious solitude time. I don’t have time for that though, so the mountain will have to do. I’ve been thinking about your birthday, a lot. More so then your death day. I have a few ideas about what we will do. I think I remember thinking on Tuesday, as I was flying down the mountain, that Tuesday was an o.k. day. It was the first day in a long time that my head didn’t feel foggy or weighed down. It was the first day in a long time that I thought to myself, alright… this is easy. You can totally do all of this. This meaning the 1 billion ideas I have roaming around my head in regards to you/childhood cancer/bigger picture/cancer is an asshole plan. The hiking and being outside with nature seems to really work for me. That and Dr. JoRo go hand in hand with saving my life. I’ve been doing alright without her here. The best that I can do. I repeat a lot of her words in my head and try to make myself be mindful of every single thing that I am feeling. She’s been checking in on me a lot and I actually went down to the MISS office on Tuesday where I sat in her office to get some shit done. Thanks, Yasaman and Kathy for letting me crash the place for a bit. I was able to be productive for a few hours and it felt nice to get some things checked off of my never-ending list.

I’ve been spending a lot of time with your brothers. They had a friend over this week to play. It was nice for all of us. I miss doing things like that with them. I miss the days when play dates ruled our world and cancer did not exist. I took them swimming and I allowed myself to get lost in a book for a bit. I never read anymore. I’m starting to do it a little more of it. I have to try for my mental well-being… I’ve been a reader since before I could freaking read. It’s always been a part of me. For as hard as it is for me now because my concentration is shot, I really want it back in my life. Your daddy asked me a couple of weeks ago if I ever thought I would start to read again. He said to me, “Remember when you used to read a book, in a day?” Yeah, I remember. I remember a lot of the things I used to love to do that I just don’t do anymore. The self-torture is never-ending around here. I don’t like to do things that make me feel good. It does not feel good to me to feel good anymore. It just comes with a ton of guilt/demons/you should not feel happy about anything because you are gone. Even the one thing that makes me feel o.k. like exercising, comes with a heavy price tag. Don’t think I’m not beating myself up on that mountain to make myself physically feel the pain because I am. I am constantly telling myself if it doesn’t hurt or I’m not puking, I’m not trying hard enough. That nothing is good enough. I couldn’t save you, so why the fuck should I save myself? I know why. UGH. For as much as I don’t want to, I do know why. I see the shreds of happiness you leave around. I feel like I am holding on to them as tightly as I can. I’m trying my hardest not to let go, Ro. I am trying.

I had a board meeting last night. It lasted almost 5 hours. It was beautiful. It was painful. They always are. Nothing beautiful in this world, comes without pain. It’s just they way life is. But once again, sitting in that room with the loveliest little souls alive, I felt blessed. And thankful. They all love you so deeply and so much, that it sometimes leaves me speechless. We talked about a lot of foundation things. We talked about your birthday and death day. At one point, I had no choice but to put my head down on the table and sob. I was trying my best to be strong, but when it comes to talking about your one year shit, there is no being strong. There is no need to be. Especially in a room full of them. I cried. I told them all how nothing seems good enough. I told them all how I have been racking my brain, just waiting for something to come to me, to honor you. But it’s not happening. This is what I have for May, Ronan. The day you died. Your birthday. Mother’s Day. The day we had your funeral. Your Daddy’s Birthday. I mean, really world. Could you throw one more thing in there for me to deal with. May is awful. May is horrific. I wish I could bypass that month all together. I know I have to get a plain in place, otherwise I’m going to be fucked. If I don’t have a plan, May will spiral out of control. Nobody can save me from May. It’s coming and there is nothing I can do about it except try to take the days that I know are going to be the hardest, and try to deal with them, head on. What choice do I have? I can’t bury myself or slit my wrists. I just won’t. I promised two very important people this. I’m not breaking my promise to either one of them. I love them too much.

Babydoll. This is all I can do tonight. It’s late. I’m tired. I have a busy day tomorrow. I have a busy day, but I’ll still get my ass up on that mountain, to have some time with you. I love you. I miss you. I hope you are safe. Sweet dreams.

xoxo

RoSweetness.RoMagic.RoLove.RoMazing.

Ronan. Can you even believe the sweet pictures, below? Some little girl, whom we don’t know had her 7th Birthday party today. She wanted to share the RoLove so she did her whole birthday party with you, everywhere. Thank you, sweet dolly Kate and her mommy, Nicole. I feel like I’ve been kissed on my lips by my Robaby himself.

People’s kinds hearts are amazing. And these little girls will grow up to be even more amazing, because of our love baby doll. I am so thankful for the parent’s who are grateful for the lessons they are learning. I am so grateful for parents like this, who understand how lucky they are to have their babes to tuck in and kiss goodnight. I am so thankful for the beauty that WILL come out of this. Your death will not be in vain, Ronan. I will keep spreading our love, everywhere. I am thankful for the beautiful people who are listening. Thank you so much. To ALL of you.

xoxo

Happy Fucking Mother Fucking Birthday

Ronan. I think I thought last year was a hard birthday for me to celebrate. I’m pretty sure I bitched and complained about it. I wish I would have known then, what I know now. That last year, was the best birthday of my life. I know we were in the hospital. I know we spent the day, in your bed, cuddling and playing Star Wars. I would have given anything, for that day today.

My birthday is almost over. Thankfully. I expected it to be hard. It was a day full of ups and downs. You would not believe all the beautiful things people did for me and said to me. It was a day where I had so many people try to make me smile. I smiled over a few things. It was a day full of lap dances, Miranda dances, Purple, Skulls, kisses, hugs, tears, phone calls, text messages, FB messages….. and so many beautiful people. Want to know some of my favorite things that I got told? I have a few that I can remember. Someone told me how it was just another day, right? And 2011 was officially the worst year ever. I exhaled when I read that. YES. THANK YOU. I’m being serious too, Miss J. I so appreciated your honesty. Somebody told me, “Happy Fucky Birthday!!” I laughed over that one. Thanks Sarah. Somebody wrote to me, “Happy RObirthday!” I loved that one. I got a lot of “Happy Fucking Birthdays!” I of course, loved those too. The card above is from one of the sweetest souls I’ve never met but I hope to someday. Her card made me smile from ear to ear. Thanks, K.

I spent the day trying to be kind to myself. Something that is hard for me to do now. I spent the day, just trying to get through the day, without you. I couldn’t believe I had to spend my birthday, without my best friend. I worried about you a lot today. I missed you so much. I cried a lot. I just wanted to today to be over. I told your daddy that I was so mad that I was having another birthday, and you were not. Dr. JoRo texted me to see how I was doing today. I responded back to her, “Bloody fucking fucking mother fucking awful. Shaking a lot. Going to try to run some of this off.” She said her birthday was always hell for her too. She said she was going to do some sort of kindness act for you tonight. That made me smile. I went for a run. It didn’t stop the shaking of my hands. Nothing does.

The whole not celebrating my birthday did not work either. It turns out…. the lovies in our lives were not having it. So the day and night was filled with more I love you’s, than ever. Your daddy picked up your brothers from school for me. My mind was in one of those moods today where it played tricks on me. I had myself convinced that you were going to come running through our front door yelling, “Happy Birthday, mama!” I sat and watched out the window for your daddy’s car to appear with you and your brothers in it. I imagined how you would all tell me that this was indeed a sick joke and you were alive and well. I imagined your daddy telling me he had brought you back to life, for my birthday. I know you know how this turned out. None of this happened. Not any of this, came true. Your daddy and brothers took me to AZ88, one of my favorite restaurants for dinner. I blew out my birthday candle. I made one wish. The same one that I make 50 times a day. I hoped, wished, and begged that you were safe. I put on my best face and thanked your brothers and daddy for such a nice birthday. We came home and we all snuggled in our bed and watched part of a movie. Quinn asked if the two of us could sleep in your bed again tonight. I told him o.k. We snuggled up, I kissed him goodnight, we said goodnight to you, and he soon fell asleep. I’ll sleep with him in your bed again tonight. It makes me sad that your bedroom is so empty now. I feel so guilty that it is so sad and lonely. I have been sleeping in your room just to mess up your little bed and to cuddle with all of your Master Yoda‘s and monkey friends.

I ended tonight with a phone call from one our favorites, New York Miss Macy. Fucking fuck I miss her. The phone call started off with me crying so hard, that I couldn’t even talk. It ended with us both in fits of giggles. Her ability to bring the laughter and sunshine out in me is a gift that nobody else has the capability of doing. She asked me what I was going to do in NYC. She asked me if I was going to visit Sloan Kettering. I told her I didn’t think so, unless I wanted to end up in jail. I told her I was pretty sure they had me on a watch list, after the letter I sent to Dr. Kushner. We cracked up at the thought of me wearing disquises, in order to get into the hospital. She said she knows I could pull off some awesome mustaches. We cracked up at the thought of this. She misses you so much too.

I’m going to end this tonight now, Ro. I miss you so much. I’m so sorry. I hope you are safe. G’nite, sweet dreams, I love you.

xoxo

Dear Loveliest of Lovelies,

Thank you all. For being so kind, sweet and thoughtful. Thank you for taking the time out of your day, to wish me a Happy Birthday, Unbirthday, Fucking Fucked Birthday, not a birthday, a Wild and Free Birthday, a RoBirthday, and all the other creative things you came up with. You made me smile through my tears. You made me feel loved. You made me actually feel which is hard for me to do though all the numbness. You all are the best RoFriends a girl could ever ask for. I know Ronan is so thankful for all of you. So am I.

I love you all.

xoxo

Survival of Christmas, an Anniversary, and an UnBirthday= A SPARTAN DEATH RACE

Ronan. I feel dead. For real. Like I’m living here but I’m not alive. I’m numb. Again. It must be the holidays that are right around the corner. The ones that I cannot wait to be over. But then you know what’s next….. an anniversary. Our 10 year anniversary.  Impressive right? We were supposed to be in Peru, hiking Machu Picchu. We were supposed to be doing something extra special to celebrate the life that we had been so blessed with, the life we worked so hard for. To celebrate our happy life of still being each others best friends with the most perfect little family we could not have dreamed up because it was that perfect. It was simple. It revolved around pure and true love. With the most 3 beautiful boys, ruling our house which was always overflowing with love, fights, silliness, chaos, naughtiness, sweetness, laughter, dancing, sports, calmness, peacefulness, and security. What more could we ask for? Nothing. We didn’t ask for anything as we knew that we were beyond blessed. But then you got sick. And then you died. And now we are here. With a 10 year anniversary coming up to celebrate. No thanks. I would not like to sit in a fancy restaurant this year. I’ve never really liked to sit in a fancy restaurant, any year. I would really like to dig that hole in my backyard and Woody can throw me down food to eat. Kind of romantic, right? I can see how many marshmallows I can catch in my mouth. No fancy restaurants. No fancy anything. And next up….. My birthday! HOLLA!!!!! That one is sure to be bloody horrific. I remember where I was last year. We were at PCH cuddled up in your bed. We got woken up by one of our favorite lovelies with, “Good morning, young lady!” It was the best way to start my very unbirthday. But you told me happy birthday and smothered me with kisses. So many kisses. I was so happy to be there with you. My girlfriends tried to get me out but I think I denied their request. I am pretty sure I stayed with you on my Unbirthday. Playroom Kathy brought me a little cake. You fed it to me. So sweet. It was the best birthday I’ve ever had because we were together. More together than we had ever been in life before. Life and Death partners. One mommy who was healthy and one baby who was sick. Very, very sick. But we didn’t let that stop our parties in your bed. Right, Ro. We partied like it was 1999 with your chemo, and asspole as our guests. We didn’t care. They couldn’t cramp our style. You were getting better. Obviously. That’s what everybody was saying. You really weren’t. At this point, I think this is when everything started to spiral out of control, we just had no way of truly knowing it. Scans were next! After this last round 6 of your chemo. For not having much of a memory anymore, I remember much of this. I can even remember the hospital room we were in and which side of the room we were on. Not a window side, which we always hated when we had to share a room at PCH with other people. We loved our view and a window view room was always such a treat.

So, Ro. A birthday is coming up. But I think I stopped having birthdays when you were diagnosed. This will be my second annual Very Unbirthday Day to me! Does this mean I get to subtract 2 from my actual age? I think that is a fabulous idea. I will not be 34 this year. I get to be 32. I’ll just start getting younger as I think I deserve this after having to go through this life and losing you. Although, I actually feel like I am 74 after everything that has happened. So, what does one do on her second annual Very Unbirthday Day? Go skydiving, of course. I told you I was making plans, Ro. Lots of plans to try to make myself feel alive, otherwise I don’t have a chance at staying on this earth. I think skydiving is a MUST. You know what else is coming up?? After my trip to NYC…. The Spartan Death Race.  Check it out here: http://www.spartanrace.com/      It’s in February at Rawhide. All I heard were the words, 9 miles, mud, fire, tight spaces, obstacle courses, and you may die and I couldn’t sign up fast enough. There was also some huge liability waiver I had to initial as well. It said something about them not being held responsible for your death. I skimmed over it. I signed it in blood. Bring it on. You had me at, “you may die.” I’m not scared to die Ro. Your Sparkly made me look him eyes and promise him no more death hikes at night. And I promised. Had to. So, no more night death hikes means I must find something else to help this insanity. I also told him, “Ronan died of cancer. That makes me invincible.” Because if I am still here, surviving this pain, surly I can survive a 9 mile little race, right? Absolutely. And I know you know the reason behind all of this madness. These things are the only things that make me feel a different kind of pain and it takes my dead body and makes it feel alive for a short period of time. On normal days, I am a walking zombie. I wish I had a cool Bill Murray Zombie friend to hang out with. Or you. I wish you were here and would be my zombie friend. We were the best team. We were the best everything.

I miss you. I love you. I hope you are safe. I worry about you so much. All day long. All night long. The worrying never goes away. I love you my spicy monkey boy. I love you to the moon and back. Sweet dreams.

Quinny misses you so much. This pic rips my heart out, Ro. For so many reasons. But I’m trying so hard to keep them happy.

Happy freaking birthday, Daddy Woo

Ronan. Tomorrow is your daddy’s birthday. Fuck. May is so busy, full of so many things to celebrate, except for not really anymore. I mean, really, did you have to leave us in May? Before your birthday, your daddy’s, and Liam and Quinn’s is coming up too. I’m going to try to be extra happy for your daddy tomorrow, but all this may consist of is getting my ass out of bed to make sure I tell him how much I love him. And how freaking sorry I am that we have nothing to celebrate. Because we don’t, and it would be weird to pretend like we do. We will make it the best day that we can though. Liam and Quinn have their last day of school tomorrow. I am so relieved about that. I am ready for a summer break and some quiet time to escape here for a bit. I need some time with your brothers with some fresh air and nothing but the love that we are holding on to. Our love just has to get us through this. We all need to reconnect so school could not have ended at a more perfect time. We are all ready for a little down time. Time to slowly repair all the little things we can by being together and finding a new normal I guess. As much as I hate saying that, a new normal is what we have to try to get used to. I don’t want a fucking new normal though. I want our fucking old normal back. Back when I was such a busy little housewife that I thought it was a chore to take my wild 3 year old to the grocery store with me. But we would go and have the best time. We would then come home, take our sweet naps, wake up, clean up the house, start dinner, clean up with that, baths, showers, homework….. Everything was so important and so exhausting. Ummmmm… no. It wasn’t. It was the most beautiful life with 3 healthy boys. Who cares that you took a pen and stabbed holes in our ottoman. Who cares that you took toothpaste and squirted it all over the bathroom floor and covered the mirrors with it. Who cares that you took a Sharpie and drew all over the walls. I was that mom; the mom that cared. Although I did find most of your little shenanigans funny….. you got into trouble for all three of those things. So stupid. So nothing. So something a 3-year-old should be doing and not getting yelled at for. Although, I’m not a big yeller. You know I’m more of the fun mom who just kind of embraced every creative thing you used to do. It was all part of  your growing up, learning right from wrong, and encouraging you in any way possible. I’m so sorry for the last 8 months of your life and the real growing up you had to do. You learned such hard lessons and none of it was fair or right. You had to grow up way too fast and I will never get over that.

Ronan. I’m still here. Where are you? I’ve looked for you everywhere and cannot find you. I’ve looked for you in the reflection of my window. I’ve looked for you at the restaurant that we ate at today for your daddy’s birthday. I’ve looked for you on the side of the road. You are nowhere to be found. I want to be nowhere too. I want to be nowhere with you. But I can’t. Despite my wishing for the world to stop; it hasn’t and therefore, neither can I. So, I’ve been doing all the things I’m “supposed,” to be doing. I’ve been getting out of bed. I’ve been running errands. I’ve been taking care of your brothers. But I’ve been hiding too. Hiding from the people I love the most. Sometimes, I crawl back into bed in the middle of the day and hide there for a couple of hours. I never sleep. I pretty much lay there and just cry. And than I think about you and how mad you would be if you knew what it was, that I was doing. That forces me to get up and moving again. I never liked to make you mad. You had such a temper. I miss that. The days are still really blurry and I still have no concept of time. I do know that the pain from you being gone is now getting worse. The numbness is wearing off and the pain is almost intolerable. My stomach sinks a lot to the floor. I’m still dealing with the whole breathing thing too. I catch myself a hundred times a day not taking enough breaths. I have to tell myself that I have to breathe. I feel like I should be wearing an oxygen mask around 24/7. I wonder if this would help. I doubt it. I don’t think anything would help at this point.

Today is your daddy’s birthday. I’m so sad that you are not here for it. All day I have thought about how we would have celebrated him together, as a family. The way he deserves to be celebrated everyday. You know what I did for him on his special day? I let him drive me to my therapist appointment. He always asks if he can drive me and I always so rudely tell him no; that I don’t need to be driven. Today, on his freaking birthday; I asked him if he wanted to drive with me. Just so we could be together. It is your daddy’s day, yet he ended up doing something special for me. Par for the course. I promise to make this up to him someday. But honestly, this was the best I could do today. This is as good as it gets this year. I’m sorry, Woo. I do love you. My birthday wish for your Daddy tonight, Ro, is for you to visit him in his dreams. Please. He needs you.
I’ve had a hard time feeling you around me these past few days. I think it is because I am physically so consumed by my pain that my body is not letting me feel anything else. I saw Mr. Sparkly Eyes yesterday. He told me how you came to visit him in his dream. He told me how he saw your big blue eyes and how you told him you were o.k. I am so thankful for that. I love that you are finding a way to get to me, even when I am having the hardest time finding you. I love how you will do whatever it takes to let me know you are o.k. because I really, really, need to know that. I have no sense of peace, Ro and why should I? I don’t understand how any mother who has lost a child can ever really have peace. I think people say a lot of shit to make themselves feel better about losing a child. And I know I am new to this club, but I can already tell you everything I am hearing is bullshit and things like, you will come to peace with this, are only said by people to get through the day. Once you lose a child, it’s as if you have to retrain your mind and the way it works just to go on.  I’m still in the, fuck everything phase and nothing is ever going to get any easier. I suppose the pain may lesson after time goes on, but only because your brain is filled with new memories and somehow the memories of your child seem fade. It must be because you learn to reset your brain and you learn a new way of living so that it doesn’t feel like dying. But what do I know? I don’t think any one person deals with this the exact same way. This is just my observation and as I have learned…. I know nothing except for what I am feeling. And sometimes I do not even know that. This whole thing is a fucking learning experience that I never wanted to be a part of. One of my favorite quotes in the world has always been from the movie, “Shawshank Redemption.” I was reminded of this the other day when I was laying in bed, hiding, and your daddy came in and said, “Get busy living, or get busying dying.” I just gave him my normal, piss off look. But I know he is right; like always. I told you that daddy of yours was a smart man.
Everything we do now is so. freaking. boring. I said this out loud to your brothers tonight. I actually said to them, “How boring is life without Ronan?” They both agreed and Liam talked about how much he misses you. We then took turns saying if you were with us right now, what you would be doing. There was so much laugher when you were around. That is one thing I will never forget. You filled up any empty space with your giggles and craziness. I never knew how dull life was until you showed us what we were missing. Oh, Ro. I really don’t know what we are going to do without you. Everything is so empty.
I’m having a hard time. I know you know this. I’m haunted by a lot of things. I told my therapist, Sarah, today how right now, I cannot stop thinking about your eyes how they looked the last couple of days before you died. They turned from a crystal blue, to a deep blue like the ocean. I keep wondering if it was because your little soul was getting ready to leave this earth. I think about  this all of the time and I cannot get the image of you and the way the color of your eyes changed out of my head. Someday, I hope to replace this sad memory of you, with all of the happy ones I experienced. Someday, my sweet boy. I will pray for this.
I love you to the moon and back. Just me and you, forever and ever. G’nite my baby doll. I’ll love you forever.
xoxo

Happy 4th Birthday Ronan Sean Thompson

Ronan. Happy 4th Birthday baby boy. It was the fastest 4 years of my life. It flew by in the blink of any eye; but now that you are gone, the days and nights drag on forever. Time seems to be standing still. I woke up at 6 a.m. and hiked Camelback by myself. I have decided to make this a tradition and do this on your birthday every year. I put about 20 of your purple F U Cancer bracelets in my backpack and when I got to the top of the mountain, I decorated one of the trees with all of your bracelets. I hope a bunch of new people are wearing your little purple bracelets around and I hope they know your story now. I’m so motivated on spreading the word that I will do whatever it takes. I looked for you at the top of the mountain today, but I didn’t see you. I miss your beautiful face so very much.

After my hike, I came home and got ready for your day. It was a hard day and all I really wanted to do was hide in my bed. I didn’t but I honestly don’t know how I survived. I had to write out your obituary today. On your birthday of all days. Your daddy wanted it done. It really only took a few minutes and I am surprised how quickly all of the words came to me. I guess you were helping me along because it was very effortless. Who would have thought that I would be writing out the words to be printed in the paper about your death, on the day you were born. It really is the cruelest joke ever. And nobody is laughing.

Your dad, Nana, and I took Liam and Quinn to Chelsea’s Kitchen for lunch; your favorite spot. Quinn ordered a Shirley Temple and they brought him his drink with lots of extra cherries and I didn’t even have to ask. It was just the way you would have liked it, Ro. I ate the Ahi Tuna Tacos just for you because I have not eaten in about 3 days. I was not hungry, but I forced myself to eat for the sake of your birthday. After lunch, we took Liam and Quinn to Target to pick out a gift from you to them for your birthday. Liam got the new Lego Pirates of the Caribbean PS3 game. Quinny got a new Lego Wii Controller. It was hard to walk through Target without you as that used to be our special thing to do. It felt very eerie and sad.

We came back home and tried to fill the rest of the day with as much happiness as possible. It was exhausting and we all had a hard day, trying to make something so sad, somewhat happy. We didn’t pretend not to be sad though. We talked about it instead. I told Quinn how he and Liam may need to go talk to someone about all of this. He just responded, “Why mom? I can just talk to you.” I told him of course he could, but sometimes it was good to talk to someone on the outside because I am hurting so badly as well. I told him I would go with him and tried to explain to him how this was the worst thing that could happen to a family and how important it is to embrace all of our feelings and not keep them bottled up inside. He seemed to understand what I was saying for the most part but I know at 8 years old he cannot grasp the magnitude of what has happened. At 33, I have yet to grasp it myself. Shock and numbness are still all I feel.

Later in the evening, our house started to fill up with some of the girls whom shall remain nameless. You know who they all are; the one’s who have held me up this whole time.  The one’s that love you so much, that they seem almost just as sad as me. The one’s whom I would not be standing here if it were not for them. They all wanted to celebrate you, Ro. They swooped me off for a few hours and we celebrated you in the most beautiful way possible. 11 of us got tattoos in your honor. Almost all purple stars, some tiny, some big. There were a lot of tears tonight with the girls, but the amount of love was something like I have never experienced before in a room full of all women. At one point, I looked at Fernanda and said, “I feel like there is so much love here, that it is going to bring him back.” I am serious when I say that. I felt like the heavens above would open up and drop you back down into my arms where you belong. That is the only place you belong and I will never stop believing that it is going to happen someday. But Ronan, if it doesn’t happen, I will try my hardest to be o.k. I have the best man taking care of me, the best twin boys, and friends that are so unbelievably beautiful that they seem almost not real. I don’t know how I got so lucky to have all of them; but I know that I am so ridiculously thankful that it makes my head spin.

Once we finished up our little tribute to you, we went outside with a bunch of purple balloons. I held a purple star one for you. All of us gathered around in the parking lot and sang “Happy Birthday,” to you baby. We then let the balloons go. We all cried, held on to each other and watched the balloons float into the dark air. It was beautiful for being so sad. We all came back to our house and broke out your birthday cake. Quinn and Liam were dying to have some. Gathered with a bunch of our friends, I lit 4 candles for you and we all sang “Happy Birthday,” again. My eyes stayed totally locked on your daddy’s eyes because I knew if I looked elsewhere, I was going to lose it. I had to stay strong in front of Liam and Quinn. I put on my best mama boots and sucked it up. I wished for you baby. Just like I’ll do everyday for the rest of my painfully long life. Being without you is like being a trapped wild animal. I will never escape this cage and I wonder if this feeling of restlessness will last forever. It  makes me want to crawl out of my skin, this feeling of being without you. How long before I completely crack?? I can slowly feel the numbness wearing off and I am so scared of what is to come. Just the tiniest taste of knowing what life is really like without you is so physically painful that I am almost positive that I won’t survive this. If the pain of a broken heart could really kill someone, I would be dead by now.

I’m sorry, Ro. For being so sad tonight. I hope it makes you feel better to see how we ended your day. I know you saw us outside, playing basketball in the dark with your brothers. I could almost hear your whispers in the cool air of the night. I know you know how much we all love you and miss you so much. So many people let balloons go today for your birthday. People we don’t even know, Ro. You are the most loved little boy up in the sky. I love you to the moon and back. It was the best worst birthday ever and we will never stop celebrating your life. G’nite sweet baby boy. I love you so much.

xoxo

Living is easy with your eyes closed

I have no idea what day it is even…. Wednesday I think? The days and nights are so blurry here and it is so easy to lose track of the time, days, and nights as they all seem to blend together. I do know that today is my dear birthday bunny, Jen’s birthday. Happy Birthday my sweet friend. Thank you for being a rock for me these past 5 months. I love you dearly<3 I hope you had a beautiful day.

My morning started off great with my friend Melissa bringing by coffee and her gorgeous smile for me. Ronan wasn’t up for visitors, kicked her out of the room, so we went into the hallway and caught up for a bit. Ronan would scream for me every so often so I would come and and tell him I was looking for Dr. Wood. He seemed satisfied with that answer so I was able to go back into the hallway and finish my conversation with Melissa. After she left, I was able to get out of the hospital today for most of the day. It was much needed and Mimi Kay and Papa Charlie came and sat with Ronan for me. So thankful. I can feel myself going a little stir crazy. It was nice to be out and about today. I returned around 5 to a happy Ronan and our 3-year-old roommate, Angel, who had been left alone almost the entire day. He sat and told me that his parents were never coming back. These are the same parents who left him alone last night for about an hour and when I went to ask Angel where they went he replied, “They went to smoke.” OMG. I spent the next 2 hours tonight tending to him and sharing Ronan’s popsicles and toys. I felt bad for the little boy. A 3 year old should not be left alone, EVER! He started throwing things at Ronan which in turn, made Ronan upset and the two of them were screaming back and forth at each other. Ronan ended up in tears because the roommate said to him, “You’re a bad boy!” Ronan looked at me and said, “I not a bad boy, mama!” I told him of course he was not but that didn’t stop the little tears from sliding down his cheeks. He is so tough but really got his feelings hurt tonight. There was not a nurse in sight up on 3 to handle this, so I did best I could. That floor 3 is a little coo-coo. Dr. Eshun gave us the green light to move to the 2nd floor tonight, thank god! We moved down here after the Angel incident and his parents had still not returned. We are just happy to be out of that room and down to our fun floor with the BEST nurses in the world. They were all so excited to see Ronan and he was just as happy to see them. The 2nd floor is like our second home now… it was weird to be here, but not with our “family.”  Somebody even wrote, “Rockstar Ronan,” on the whiteboard where all the nurses/patients info goes…. so cute that they know his nickname:) We are happy campers to be back down here and Ro baby is sound asleep. His ANC was still at 0 as of this morning. UGH. Please let it come up tomorrow. We are itching to get out of here and be back home.

Somebody sent some goodies tonight and I have no idea they  came from, as there was not a card. It was a bag full of some Star Wars toys, some fun books, Coffees for me…. Any takers??!?! Please let me know who you are… I would like to give you a proper thank you. It made our night! Ronan has been having a blast with his coloring books and little light saber racing car. THANK YOU!!!!!

I’m getting anxious and homesick tonight. Hoping I can unwind with a movie or something. I could seriously use some yoga in my life right about now. I feel like I have a lot to say, but my mind/body/soul is shutting down. Hospital exhaustion is kicking in. I am so thankful for my thoughtful husband and the Bose Headphones he bought me for Christmas. Music is saving my life through all of this…. thanks Wooddawg for being so thoughtful all of the time. You are the best gift giver in the entire world. Hope you all have a beautiful, blessed night. Sweetest dreams!

Extra special dreams tonight to my dear Charisma. I told you all the stars would end up aligning for you. More good things to come your way my dear. I can feel it!!

xoxo