The Eye of the Storm

 

 

 

Ronan. I am in the eye of the storm. The month of hell. You are working really, really hard, to make sure I survive this. You have been working so hard, that I can hardly keep up with all of the amazing things that have been going on. This week has been a blur. Between finishing my 30 day hiking challenge, working on some things for your foundation, preparing for our trip, a couple of amazing dinners about some ideas that I would like to see happen, getting ready for your birthday at PCH… I don’t even know what day it is. That is probably a good thing for today. I would not have made it through the week if I had been sitting around, thinking about where we were, last year at this time. I know where we were. I had 5 days left with you. Just 5 days. And tomorrow it will be four. I still don’t know how this can be, but it is. This is just the way it is and there is nothing I can do, to change it.

I had one of the best nights I’ve had in a really, really, long time the other night. You just happened to make sure your Fairy RoMo, got dropped in my lap at the beginning of the month of hell. How in the world did you pull that one off? I don’t know, but the stars aligned and the next thing I knew, your Fairy RoMo just landed in my lap. It just happened to be on the night of Rita’s birthday, too. The two of us met up with your Fairy RoMo at some Hotel that seemed to not have a name because it was as if we were somewhere completely else, not 10 minutes away from our house. We sat outside, under the stars and got lost in the night. We talked, laughed, cried, and worked on our evil little plans to take over the world, while curing childhood cancer and traveling to Iceland. I watched them, watch me. I watched the way they looked so so sad, yet both of their eyes sparkled in the night whenever we talked about you. I listened to the most beautiful story about a purple balloon that was let go in Central Park for you. I started to cry during this story. Not only out of sadness but also out of love. The sadness and love of the story that was told was one of the most beautiful things I have heard since losing you. I watched my friends as they looked at me and said, “You have to stay here. You promised.” I told them I knew. I remind myself of the promise I made 50 times a day to keep me going. After a very late night of lots of Roplans I came home exhausted but I felt peaceful. Being in the presence of those two very special souls heals little pieces of my heart. They leave me feeling inspired and my soul awakened. I know they are both gifts from you. It was because of them, that I made it through that May day.

Now it is a new May Day. May 6th. 3 more days. 3 more days is all I had left of you, at this time, last year. I had to get out of Phoenix. We left today. Left to go far, far away but it will never be far enough. This is not a vacation. This is a get me the fuck out of Phoenix for the day that he died/his birthday. Vacations will never exist in my world again. We made it to our destination and I hate the reason that we are here. But all I can continue to do is to continue to fight upstream in this never-ending battle of a current that wants me to drown. It is a constant never ending battle and on days like today, I get really tired. Days like today that consist of long airplane rides with a little 5-year-old stranger that sits right across from you in the aisle of the airplane. I wanted to say to his mom, “Hey! I have a 5-year-old too! He is right next to me. Maybe our two little boys could play together on this very long, very boring, flight to hell. Wait? You are not going to hell? I am. Because my 5-year-old is dead. So I don’t get to have him here anymore. But so nice meeting you! Have a great vacation!”

I didn’t get to say any of those things. I sat on the airplane with Quinn instead and did not even cry. I felt numb. Yeah. I scooped out some of your ashes this morning before we left. And guess what. I didn’t even cry doing this. How is that possible? Because I am that strong? No. It has nothing to do with strength. It has everything to do with this being so unreal to me, that it is not real. I often leave my body when I have to do things like this. I leave my own body a lot and I swear I float above, watching the girl below scoop out her child’s ashes of his urn while not crying. Sometimes it’s the only way to get through this. I don’t know how I’m going to survive these next days coming up but what choice do I have? Your brothers are happy. Your brothers are excited. I am trying my hardest to act happy and excited too, Ronan. But everything is screaming that this is all so wrong. Everything is screaming to get me as far away from this fucked up world as possible because there is nothing right about any of this.

This is all for tonight, baby doll. This is all I can do. I’m so sorry. I love you. I miss you. I hope you are safe.

xoxo

Diamonds Are Not a Girl’s Best Friend

Ronan. Does it sometimes feel like I want to rain on everybody’s happy parade? Because I don’t. I am happy there are happy people out there. I am happy that most people out there do not know what it feels like to lose a child….. well, I may be taking the happy word a little too far, because you know I don’t know what happy feels like anymore. So let’s tell it like it is…. happy is not the right word. I am glad. Glad that most people won’t know this pain. But I really hope from reading this story, they get how lucky they are and they choose to live life a little differently. Just by knowing how it really is the small things in life, that matter the most. The sweet whispers of a child, the helping of a stranger, the butterfly kisses of the world, a child’s hand, laughter, a solid marriage, strong friendships, true friendships, loving yourself, soul mates, being kind to others, sparky eyes, and helping when you are in a position to do so. These are the things that matter in life. Nothing else.

I have some bereaved mommy confessions to make. I have a lot of them, but in order to confess them all, I would need to write a book. And maybe a good attorney to keep me out of jail. Let’s just start with a couple tonight. The one that makes me feel like such a jerk. Let’s call this one, “Confessions of a bereaved mommy who now hates to wear jewelry.” This didn’t happen until after I lost you. Until I started wearing your ashes around my neck. Until one day, I looked down at my diamond ring and got really mad. It made no sense. I did everything right. I married the right man. We loved each other. We had formed a house full of respect, love, compassion, strength and honesty. But now our baby boy, was dead. But I had the pretty jewelry. The jewelry was there, but you were not. I didn’t want the jewelry. I only wanted you. I slowly started to put all of my pretties away. Christmas and my birthday came and went. Guess what was given to me? A new pretty ring and matching earrings. Tears were cried over the gifts that I did not want. Your daddy only wanted to make me smile. But I cried instead. Take it away. I don’t want it. It’s too pretty for me to wear. And I am so ugly. Can’t you see how ugly and sad I am?? I don’t deserve to wear this pretty jewelry. I have Ronan, around my neck… I don’t need anything else. None of this stuff really matters and because life is not fair, the jewelry gets to stay and Ronan gets to die? I want the jewelry to die, instead. Your daddy insisted I keep it all. I did. I tried. I’ve worn the pretty ring and earrings once and it didn’t make me happy; it just makes me sad to look at. I put it away with the rest of my things. It came up tonight, again. I begged your daddy to take it all back. “I won’t wear it!” I told that daddy of yours. “But you are so thoughtful. Thank you. It really is the thought that counts, Daddy Woo….. but the only thing I need to wear…..is Ronan.” I’ll mix it up a bit, Ro. I’ll wear some inexpensive skull bracelets around my arms, your bracelets, or some cheap Forever 21 jewelry that is bright, but diamonds, gems, stones….. I can’t do it. I used to think diamonds were a girls best friend. I thought that, until I had my best friend taken away from me. A diamond cannot replace you. A diamond cannot bring you back. A diamond cannot make me smile. A diamond only makes me sad. I fight with this a lot. Because I know anything and everything your daddy does, comes from such a good place. So why can’t I just suck it up, smile, and wear the pretty things? I mean, really…. it could be so easy to do. If I were a fake. But that’s just one thing I’m not. I cannot suck it up and fake it with the stupid jewelry. This makes me feel like a big, fat jerk but I cannot look away from the lesson I’ve learned from all of this. Pretty jewelry, and I don’t care how much you have….. will never truly make a person happy. When everything else is stripped away, when the most important thing you’ve ever had in your life, is taken away and all you are left with is pretty jewelry….it will not mend a broken heart. It really just DOES NOT matter. It is not what is really important in life. It won’t stop the tears, sadness, emptiness, or loneliness one feels. It won’t bring back my smile or you. It is only a reflection of broken promises, hopes and dreams. It’s a facade. It is overcompensation for what was supposed to be, but never will be again.

I tried today. So freaking hard to have the HAPPIEST ROENTINE’S DAY EVER! I had some productive things to take care of. I had a meeting. I put on my game face. I did a lot of nice things, for others. I brought cupcakes to your Sharon at PCH. I had coffee with your other lovie and gave him our card. The smile it brought to his face, made my entire day. But his smile did not come with false words like most peoples do. His smile came with watery eyes and words like, “I know you are in excruciating pain…..” I know he knows, which makes my pain worse. I don’t like that other people hurt because of this. I never wanted to hurt anyone, Ro. Especially the one’s we love the most. It makes me sad.

Our new friend, Margarita, dropped off dinner because I have seem to have lost my cooking skills/desire. (Total inside joke for my Saline Bean…. (“I seemed to have lost my keeeeysssss”) I sat at our table, in your spot and opened the cards from your Daddy, then Quinn, then Liam, and finally, you. Your card sang. I could hardly listen to it because the tears just started pouring. I smiled through my tears, kissed your daddy and brothers and told them thank you.

I drew a hot bath. Your brother, Quinn is still sick and Ronan…. confession number 2 of the night…. I cannot take care of him. It’s all I’ve been doing since Saturday and I am about to crack. I think I’ve become a bad mom. I would have never had these feelings before losing you. I feel like a big weight is on my chest. I feel like I can’t breathe. I feel like I don’t want to be a wife or a mom anymore. Do normal people feel this way? Or is it just me? Have I gone mad? I think so. I must be mad. Insane. And sad. So very sad.

I tried to make it a very special day, Ro….. but all I did was think about you and Ben. Ben with the Bald Head. Ben who likes to eat sushi and listen to The Beatles. Ben who has a very sad mommy for the worst reason possible. I’ll attach Ben’s caring bridge tonight because I need everyone to send them their extra thoughts, love, prayers and whatever else you might do. I’m only sending them you, Ro. Only you.

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

Please think about Ro and Ben all you people out there, reading this. Please don’t just make this your bedtime story while you sit reading it, dripping in your diamonds or ice cream. Please do something to help us change this… for your kids, your grandkids, your neighbors, your friends, for anyone you love. Please help us change this, because as of now…. our pain is not yours. But bubbles can burst at anytime. Never trust a bubble.

Ro baby. It’s Ambien coma out tonight. I have not taken anything in a week. I have been sleeping like a baby, in your bed, without Ambien. I’ve been sleeping in my dead babies bed. I can’t believe this is true, but it is. Today was too much. Tonight is too much. I need a break. I just need a break from all the screaming, crying, laughing, T.V., conversations, vivid dreams of everyone but you. Where are you? Why won’t you visit me, in my dreams? I miss you so much. I’m so sorry, Ronan. I hope you are safe. I love you, baby doll.

xoxo

Ro Baby Steps

Ronan. The past couple of days, have wiped me out. Mentally and physically. I cannot believe tomorrow is Friday. Where did this week go? I blinked and it was gone. I tried to tell Tricia today, what I have been up to. I couldn’t even remember. Still waiting to find that memory of mine that seems to have disappeared. Good thing I write to you at night. Could you imagine if I did not have this blog, to keep track of everything that we have been through/done? I would not be able to remember a thing. I was trying to give Dr. Joanne, an idea of the timeline of some things that we went though. I could not remember the months that we did your treatments and traveled with you to save my life. That is one of my homework assignments this week. To create a timeline of events for her. I also get to write that letter to Dr. Kushner that I have written, a million times in my head to him and bring it to her. Should be an interesting session the next time I see her.

I woke up today, tired. I took your brothers to school and came back home. I crawled in bed. Fernanda came by and I told her I was hiding. She told me it wasn’t allowed but crawled into bed with me anyway. We snuggled in bed together and talked about a lot of things. We talked about you a lot. We held each other and she just sobbed, really hard. I held her and let her. I cried too, but not like she did today. I’ve been crying so much I guess my body just took a little break and let her do some of the crying for me. I told her that I am going back and fourth between two things. I am either thinking that you were never real, you were never mine. Or I am thinking none of this is real and you are still here. My mind has been furiously playing tricks on me for weeks now. I cannot remember what is reality or what is not. I guess it’s in protection mode again. Maybe that’s why I have not been getting any little signs from you. It’s been awhile since you changed my radio station.

Fernanda left our house with a couple of chores to do for me. We are on a mission to change the face of Childhood Cancer. We have recruited 2 of our lovelies. Tricia and Stacy. We are putting together a game plan as far as where we want to start. We are meeting in a couple of weeks to go over our ideas and to make sure we are all on the same page. We all seem so scattered right now. We need to come back together so we can work with each other on what it is we want to do. Baby steps are beginning. Ro baby steps.

I left the house soon after Fernanda. I ran some errands. I came back home and decided to skip my Inferno Hike today. I threw on my Purple Running Shoes, just for you, and decided to go on an Inferno Run instead. This is a new one. This is how you know, I’m truly in HELL. I hate running in the heat. I used to complain about it so much. I was determined to do it today. It was awful, but in the best way possible. I only made it about 5 miles. I could hardly breathe due to my throat being so dry, the entire run from the heat. Oh well. At least I am lucky enough to be alive, right?? Yeah right. So lucky. It’s just where I want to be. I have to get my butt back into running though if I’m going to do our half marathon in January. I’m going to do that thing and make it my fastest time ever, just for you.

After my Inferno Run…. which I did not die on, but I wished I would have… I came home and showered. I had to meet your Daddy at Dr. Rachel’s office for our therapy together. I don’t know why, but I always feel so peaceful sitting in that room with your Daddy. I tend to be a little more quiet, calm, but always sad. I listened to your Daddy explain your treatment path to her and why he knows we did everything we could do. Why we made the decisions we made and if we had chosen differently, he still thinks the outcome would have been the same. He’s in a good place with the things we decided for you. I am not. But that is not a reflection on your Daddy. It is a refection on me and the way I am beating myself up now. I could have 10 of the best doctors in the world, standing in front of me, telling me we made all the right choices, and I still would not believe them. I’m convinced if we would have made the right choices, you would still be here. So in my mind; I failed you. I killed you. This is my fault because I am your Mama and I should have been able to protect you. I should have known that you were dying right in front of my very eyes those past couple of months. You were my child, my soul-mate, my other half. How could I not have known, that you were dying? That makes me the worst Mama, ever. This is where I am now and I don’t need anyone to tell me differently. I don’t need your Daddy to convince me that this is not true, because it is not going to work. I have to come to a place of acceptance, by myself.

I like Dr. Rachel. She is good for the both of us, but she is really good for your Daddy. He needs to be talking to someone, other than me. He went to see her without me yesterday. I am thankful he is being open to that as I know it is not easy for him. He is good at not dealing with his things and pouring all of his energy into taking care of other people which is just not healthy. He needs to deal with the sadness that has come from everything we have been though. Otherwise, it is going to eat him alive later on in life. We cannot have that. Your Daddy is such a strong man, Ro. But he needs to realize that he doesn’t always have to be. This is why Dr. Rachel is good for him. She is good about letting him know this. I’m thankful for her.

We came home to the boys’ and my dear friend, Melissa who had picked them up from school for me. They got to have a play date with her 2 kids which they always love. Your Daddy took the boys to play basketball and I stayed home and “cooked,” dinner. Does taking food and throwing it on the grill count as cooking??? It does to me. I have not cooked in so long. I miss it, but the thought of cooking food, makes me sick to my stomach. Cooking food, sitting down to dinner, with your spot empty kills me. I did it tonight and it was just sad and lonely. I hated every second of it. I hate every second of everything right now.

I love you. I miss you. I have a wicked headache and it has nothing to do with the 100 degree heat I ran in today. Nothing at all, I’m sure. I love you. I hate this. I hope you are safe, my sweetest blue eyed boy. G’nite Ro baby. Love you forever.

xoxo

No sugar coating necessary

Ro baby. Today has been a very long day, with no end in sight. Here it is, 1 a.m. and I’ve almost been awake for a full 24 hours. I don’t really know what is going on, but this week has been really, really, hard. I do know what is going on…. you are not here which makes everything feel wrong. Your Daddy is right next to me, out like a light. I envy his sleep. I hope you are bringing him good dreams tonight as he has had awful dreams about you. That makes me sad.

I didn’t sleep well last night at all. I remember trying to fall asleep and my pillow was soon soaked with tears. Silent tears which are the worst. The tears that I am so good at hiding, as I don’t need anyone trying to comfort me because I am o.k. Right, Ro? Nobody needs to worry, because I am going to be alright. Everybody seems to know this, except me. I’m starting to think that everyone is crazy. And here, all along, I thought I was the crazy one. I am learning that I am in fact not. Everyone else is for thinking that I can survive this. Because as of now, I really, really, don’t want to. I just want to be with you and I’m not shy about saying so. I tried last night, to fall asleep in bed with your Daddy like the good wife that I am supposed to be. I couldn’t do it. I kept thinking to myself, how can I possibly sleep, without kissing you goodnight. I wanted more than anything to sneak into your room and find you sleeping in your bed. I got up, went out to the living room and had a flash back of finding you on the couch late one night. I found you, crying softly as you tried to stop the bloody nose that you had. I swear I saw you last night, sitting there again. You are haunting me but not in a good way. In a way that makes me feel so guilty and scared. I replay the images of you at your worst over and over in my head again. It’s like a movie I am watching, where you know the ending is going to be bad, but you just have to keep watching anyway. There is no shutting it off.

Little one. I passed out after starting that last night. Passed out cold. I crawled into the bottom bunk bed where Quinn sleeps, except he was up top with Liam. I curled up in Quinn’s bed, with your GiGi and fell into a deep, dreamless, sleep. I’m sure I had dreams, but I cannot remember. I woke up groggy today and really, really, sad. I put on my best smile, got showered, dressed, and put on my best mommy face for your brothers as I took them to school. After drop off, I came home and now here I sit. In bed. I’m wearing the “Fuck God,” shirt that I had made. Yup. I did. “Fuck God,” on the front and “Fuck Cancer, too,” on the back. Deal with it. If you are up there, Ro…. playing on your white, fluffy cloud, while chasing around Master Yoda, and hanging out with “God,” can you ask him a few things for me?? I have some questions that he needs to answer. I really don’t think “he,” exists, but humor me because everyone else seems to believe in him. Can you ask him, if he is really the one in charge of this world, then why he would have allowed this to happen?? What makes him think that he loves you more than I love you?? Because that is not fucking possible. Then can you please give him a swift kick in the balls for me for taking you away to be with him. What a selfish PRICK. Can you please ask him, if he is real, than what makes him think that you were supposed to be the “chosen one.” I highly doubt you wanted to be the lucky one, to leave this earth, so you could go and do something better with your time. I know all you want is to be here with me. With your Daddy and brothers, playing football or Rockband. Causing trouble every where you went, all while melting everyone who came into contact with you, with your big blue eyes and beautiful, perfect face. Can you ask God, what mother deserves to go thought this?? And how he decides this?? How in the world can he justify the Hell he is putting me through? If he gives you some bullshit answer, such as heaven needed anther angel, can you please kick him in the balls for me again. You are indeed an angel, baby. But not the kind that needed to go to heaven. You were my angel and were meant to be here on this earth, for a very long time. I am really pissed at “God,” and his fucking plan for you. I am your mom, I am the one who was supposed to make a plan for you. My plan, never in a million years, would have involved you getting cancer and dying from it. If God gives you some justifiable answers…. which is bullshit because there are not any…. than I guess you can give him a hug for me. You can also tell him, the only way that I will forgive him is if this life is not truly the life we were meant to live together. That after this Hell of a life that is now mine, the next life I live will be spent with you and we will be together for a thousand years. I will survive this Hell of a life, holding on to that little sliver of hope that you are waiting for me on the other side and we will get to come back to live happily ever after, the next time around. God has a lot of fucking making up to do. Fucking Asshole.

The tears are endless today and I’m not leaving bed until I have to get your brothers from school. I’m hiding today as I deserve to. It’s been a while since I’ve done this and I am feeling really beat down from all the constant going, going, going…..that I have done. Yesterday, I met with Dr. Joanne. I was crying before I even got to the elevator to go up to her office. She had me do some homework that I finished and brought to our session. It involved sitting with the words I had written, 2 days after your diagnoses. I took those words, and wrote myself a letter from you. I read it out loud to her and cried while doing so. We talked a lot about my letter from you. I told her how you always called me, Mama… never Mommy or Mom. I loved hearing the way you called me Mama, so much. It was one of my favorite things about this life. We talked a lot about you, me, and my grief, Inferno Fuckwad Bob. The work I do with her is always hard, but it is worth it as I leave there feeling as if I am making progress. I am surprised how easily is has been for me to just let the floodgates open with her. I know a big part of this is because when Dr. Joanne works with me, she does not push me… she pulls me. There is a big difference and we both know I don’t do well with people who push me. I will instantly throw up a big block wall and you will never get in. It’s my defense mechanism. I like to be pulled; I am o.k. with that. I can handle that.

We sat and talked about how everything I am feeling is normal. She told me that she has worked with a lot of people in her time, but not many choose to face the darkness head on like I am. I appreciated that. Darkness is inevitable in all of this. I don’t want to be afraid of it which is why I am choosing to embrace it, be open and honest about it. I often feel like I am a 10-year-old little girl again, who is lost in a big, black, dark forest. I know I have to keep walking and I cannot stop. I know there will come a time, when the thickness of the trees will clear, a bit of sunlight will peak through, and what awaits me is a huge, open field of flowers with you running through them to get to me. I’m not giving up on that picture, Ro. But I have a lot of walking to do, before I am going to get there. I am not afraid of the dark as long as I have you by my side, in any way shape or form. I know you loved me too much to have left me alone in this world without you. Our love will survive the darkness that surrounds me. You are my little light that will guide me through.

Last night, I went to a concert. Foster the People. FTP. Or as my lovie, who shall remain nameless, called them, “FTP….. yeah, it stands for Fuck the Police.” Dying laughing right now. Her words were in response to some guy that was hitting on her and he asked her if she knew what FTP meant. That was her smartass, genius response. I had a beautiful night, surrounded by amazing music and girls. You would love this band, Ronan. They are freaking amazeballs. If I were 18, I would totally abandon whatever I was doing and follow them around the country. Mark my words, they are going to be HUGE. We saw them play in a really small venue last night which is always the best. I’ll bet the next time that band tours, they will be playing in huge Arenas as I know they are going to blow up. Everybody needs this C.D. in their life. Oh, Foster. How I love you so. Monica…. thank you for swinging that extra ticket my way last night. It was just what the doctor ordered. You are a doll. As for you, FTP….. do you live inside my head? Your C.D., is the soundtrack for this hellish life that I live. Thank you for understanding, thank you for being Rockstars…. I hope you always stay true to your preppy, nerdy, smart, and passionate ways. You will forever own a piece of my heart because your music is such an escape for me. Thank you for being awesome. A band that Ronan would have LOVED. He had the best taste in music.

Alright little man. I’m going to cuddle up to your brothers now. I am tired after my day of crying and being angry at the world. It gets to be exhausting, feeling so many deep emotions that I have no control over. Please visit me tonight. Please let me know you are o.k. I miss you so much. I love you to the moon and back, baby doll. I hope you are safe. Sweet dreams.

xoxo

Ronan. This picture haunts me. Those eyes say it all. Did you know? Did you know you were going to leave me all along? Did you know that Mama wasn’t going to be able to save you, even after I promised you I would. I broke my promise to you. I failed you. I let you down. I’m sorry I couldn’t fix you. I sorry I couldn’t keep you safe. I’m sorry for everything. I know you forgive me. But I will never forgive myself. Your eyes say it all, Ronan. You knew.

Fake it till you Make it

Ronan. Hi baby doll. So, last night…. not so much fun. I fell asleep from 11-1. Was up from 1-4:00. Slept from 4-6:00. Rise and shine, adrenaline pumping. I could not sleep last night to save my life. I wandered around the house, looking for you. I went into your room and wrote. I sat and cried. I took more Melatonin. It didn’t really work. I know why. It’s because today is Esther’s 4 months since she passed away. I was worried about Doriet. I called her this morning, after I took your brothers to school and had some time before I went to see Dr. Joanne. I needed to hear her voice and to let her know I was thinking of her. It felt good to talk to her and tell her I love her. I do. I told her I would come and see her. I really want to. I really need to. I will.

I saw Dr. Joanne today. I took your “GiGi,” blanket with me and wore my locket full of your ashes. We went over the worksheet today that she had me do. I started to cry as soon as we started going over it. She said I was really feeling it today. I was. We talked a lot about you. We talked a lot about me. I told her about the strong desire I have to still take care of you. How taking care of you, now comes in the form of taking care of me. I told her that I feel like I have to hit rock bottom, how I have to walk through Hell and back, to get through this. I told her how you are worth every amount of blood, sweat and tears that I have in my body. We talked a lot about expectations. She is glad that I am strong enough to stick up for myself and go through this the way I need to. Not the way anybody else thinks I should. I love her. She is such a powerful soul. She told me today that she can tell I feel like I have one foot in the world of the living, and one foot in the world of the dead. She gets it. She was exactly right. Nobody can understand the true pain of losing a child, unless you are a bereaved mother yourself. This journey is mine and mine alone. Nobody else’s. I am o.k. with that. I prefer it like that. The session was good.

We were about to end on a pretty good note, but then I had to pull out the journal that I found while cleaning out my desk a few days ago. I guess deep down, I’ve always been a writer. I’ve written for as long as I can remember. Never anything I was serious about, but I’ve always loved it. My words have always been hauntingly honest and insightful, but I never bothered to share them with anyone but myself. I never thought I was any good at it. Never had a reason to be. I found some really disturbing words written down, 2 days after your diagnoses. Call them my insightful ways. UGH. She sat with my words for a while and seemed taken aback. She was going to give me some homework, but decided we are going to take my words, and have me sit with them and to talk to you about the things I had written. To listen to what I would hear you say, back to me. I can do this. I can do anything for you.

I came home from Dr. Joanne and changed my clothes. I went and checked some things off of my “Shit List.” I went Inferno Hiking. I had a conversation in my head with the pretend paramedic who I was going to need to save me from that Pink Rattlesnake I’ve been dreaming about. I told the pretend paramedic that I was not afraid to die from the poisonous venom of a rattlesnake. That if my time was up, than my time was up. I told him how I had you waiting for me and if we were meant to be reunited, my life, would be ending in exactly the way that it was supposed to. I told him how you must miss me so much, that you are ready to have me back taking care of you again. I told him how I was not scared at all and I said all of this with a smile on my face. I have conversations in my head all day long with people I don’t even know. I have conversations with you a lot. “Landslide,” played on my iPod. I looked behind me when Stevie Nicks sang,

“I took my love, I took it down
Climbed a mountain and I turned around
And I saw my reflection in the snow covered hills
Till the landslide brought me down.”

I turned around and looked for you. I couldn’t see you. I cried as I ran as fast as I could up the mountain today. I screamed for you. I whispered for you. I listened for you. I pretended to see you, running up the hill behind me. I wished for death. It didn’t happen. I ran as fast as I could back down the mountain, hoping to fall and break my arm. Anything to feel a break from this pain of living without you. I made it to the bottom, soaking wet, but safe and sound. Guess today was not my day to walk with you again. To hold you sweet, soft hand and kiss your perfectly plump lips. It’s days like today, that I almost cannot take being without you. I tried to eat lunch. That went over really well. I threw it all up.

I picked up your brothers. They were so happy and excited to tell me all about their day. The good grades they got on their spelling tests, math test, AR Reading points…… They are happy. They are coming to terms with the fact that you are gone and are not coming back. They are so full of hope that the fact that it is not infectious to me makes me think that I am seriously disturbed. NOTHING MAKES ME HAPPY. NOTHING. Try swallowing the guilt that comes from that. I hope someday that I will be happy again. But I am not going to walk around and pretend that I am. Fake it till you make it. As Dr. Joanne said, I sure do put on a good game face. The best I told her.

I took your brothers to Sauce for an after school snack. I sat and watched as they gobbled up pizza and engaged with them, smiled for them, laughed with them. It was fucking exhausting. Also, I’m sure the fact that I had almost no sleep last night, didn’t help. We came home, emptied out their backpacks and lunch boxes and went over their homework. I told them they could have a break, some down time. I crawled under the covers. Your Daddy came home soon after that. I fell asleep for about a half an hour. I woke up to your Daddy, telling me he was going to take your brothers to play basketball. He asked if I wanted to go. I quietly told him, “No,” as the tears slid down my cheek. I felt like I had been run over by a bus. Soon the house was quiet and empty. I got up, unloaded the dishwasher and did all the good mommy/wife things that I am supposed to be doing. I called your Nana, whom I never talk to anymore. I felt guilty as she picked up and I could hear the excitement in her voice. We talked for a few minutes. She told me she is worried about me not eating. She told me she doesn’t want me to end up in the hospital. I told her, “Who cares.” She tried to gently scold me, all while telling me she wasn’t judging me. I told her I knew that. I know she does not. She is a good mom. I promise to call her more often.

I’m going to go now baby doll. I miss you so much. I love you to the moon and back. I hope you are safe.

xoxo

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I’ll follow you into the dark

Ronan. Hi baby. I miss you so much. This morning I woke up late and so did your brothers. I didn’t fall asleep until about 3 a.m., so we slept in until around 9. I don’t know what exactly happened this morning. Actually, I do. A couple of things. Your daddy called. He was upset. He said he had awful nightmares about you all night long and did not sleep well. His dreams of you are always the same. He dreams of the two of you playing together, and you are so happy. But then you die. Hearing your dad’s voice today shook me to the core. He was so upset, which in turn, upsets me.  I then got on the internet and I was obsessing over Neuroblastoma stories, treatments, doctors, etc…. It was like I was in a black hole and could not come out. Even though you are gone, and your little life could not be saved, I sit and obsess about what we could have done differently. It’s pure torture, but I also find the need to educate myself as much as possible. I cannot get this Dr. Sholler out of my head either. After an hour of reading, I was in a bad place. I came out of my room to make your brothers breakfast and the fighting between them started up. I lost it. I mean, completely lost it. I started bawling in front of them, telling them how I could not handle their fighting today. I told them how it was not fair that you just died, and how they need to be so thankful that they have each other and LIFE, as you didn’t have a choice to live life anymore. I told them, as I was hysterically crying, that I was so sad about losing you that I don’t even know what to do anymore. Uhhhh… maybe a little too heavy for 7 year olds, but today, I couldn’t calm myself down. I think I scared them and I know it upset them to see me so upset. They both ended up crying and wrapping their arms around me and telling me they were sorry. We sat for a while and cried together and talked about how much we miss you and how much we are all hurting. I told them how it is good for them to cry, how I understand that they are boys and they are going to fight, but today, I needed them to cut me some slack. Today, I just could not emotionally handle the fighting that I know is a natural part of being brothers. But today, I just needed a break. They gave it to me and after we cried and I got them settled down, I had them sit at the table and do some writing and workbooks. I mainly did this so I could get in my phone call with my therapist, Sarah. I closed my bedroom door and as soon as Sarah picked up, I was a blubbering mess. I don’t remember much about the beginning of the conversation, but I ended up calming down. I think she even got me to laugh about a tee-shirt we were joking I was going to have made. In fact, I know she made me laugh which is why I love her so much. She has that same dark sense of humor that I do. I eat that stuff up. It works for me. We talked a lot about you, of course. She told me how it’s like I’m living in a paradox world. I couldn’t agree more. That is so how I feel. We talked about your old soul, as we are both convinced that you are one. She thinks I am one as well and we both think that I have known you in a past life. I have no doubt that we have been together many times before you were born, Ronan. It is why our bond is so strong. After my talk with Sarah, I felt better. She pulled me out of the hole that I was ready to bury myself in today. I got off the phone with her and got Liam and Quinn ready to head out to the Padres baseball game with your Papa Charlie, Uncle Larry, and all of your cousins. They needed a day out and the baseball game was the perfect place for them.

Your Mimi Kay asked if I wanted to head over to Fashion Valley with her. I said, of course and we spent the day together. We had lunch and shopped a bit. We had a good talk about you. She told me how Papa dreams about you all the time and how you always have your hair. Mimi says when she dreams of you, you are still bald. I told her how I don’t dream about you. She said she is sure that I do, that I just don’t remember it. I hope she is right. Not dreaming about you is really hard on me. I would give anything to see you, even if it is only in my dreams. That is the best it is going to get for the rest of my life. I don’t even know how to comprehend this. How can you really be gone. How can only being able to dream about you ever be enough? It won’t be, but it’s all I have now, Ro. So please, come and see me and let me see you. I’m not scared and I miss your face so much.

After my day out with Mimi, we returned back to Coronado. Your brothers were on the lawn playing baseball with your cousins. I put on my running clothes and ran a fast 6 miles. After my run, I went and played baseball with everyone. It was sweet and fun but it also hurt. All I could do was picture you playing with us. You are always missing from everything we do and it is so hard to go on with everyday things like playing a baseball game. You would have been proud of the ball I caught in the air that got Liam out. You would have been proud of the way that I thought of you when I caught that ball. I think of you in everything I do. After the baseball game, we borrowed your cousin, Layne, for the night for a sleepover. I told you the quietness of having you gone is eerie. Having someone around to play with your brothers is good for us. The louder the better. It makes them happy and seems to help them. It helps me too. The quiet scares me and is something that I am not comfortable with.

If I could have any wish in the world, Ronan, it would be for you to come back to me. Please. I’m begging you. I don’t know what to do without you. I feel dead. I don’t think I’ll ever feel alive again. I know I have your brothers and I know how lucky I am to have them, but that still does not make the pain any better. How can I live without you? Is this whole thing even real? I said today to Sarah, I feel like I’m on that show “Lost.” Is this what Purgatory is like? I feel like I am trapped between heaven and hell and there is no escaping. All I want is to be with you. I cannot believe you are not here for me to kiss, to hold, to watch you grow up and play sports, to take care of when you are sick. I can’t believe just 30 days ago, I gave you a bath after you died and then had to leave you behind in a room as your body was carried out. I cannot believe the last words  you really said to me were to “Stop being sad, Mom!” That’s it. That’s all I get? It’s not good enough, Ronan and I don’t know what to do. I need you to guide me and to tell me that I can get through this because as of now, I don’t even want to. Everything hurts too much.

I’m sorry for unloading on you, little man. I talked to Doriet tonight and she is in the same place as I am. I hurt for her so much too. Esther passed away May 6th. You, May 9th. Two of the most special old souls that have ever existed. You two have brought us together and I know it is because you and Esther are together now, watching over us. You two will take care of each other just the way Doriet and I will take care of one another. By talking about you, loving each other, and going on because of the love we have for the both of you. Somehow, baby. Somehow I will get through this.

I love you Ronan. I love you to the moon and back baby boy. Sweet dreams.

xoxo

Hospital Reality sucks

We moved out of the POU (Pedatric Oncology Unit) today and into a different area of the 9th floor. I wish we could have stayed in the POU, but moving to this room is a step up as far as getting us out of here. The POU only has 3 rooms and they are so private that you never see what is going on with the other patients there. The room we are in now, is just like the 2nd floor at PCH. Except worse in a way, because the kids seem so much sicker. I cannot even tell you what I have seen on this floor today, but it is something a mother should never have to see or experience. Let’s just say, it left me in tears most of the day. One room in particular is covered in signs about heaven and God and through the window I saw a mommy feeding her baby ice chips, scooping them into her mouth. The doors here are covered in posters that say things like, “Be strong, Be positive, Be brave.” I have had that empty pit in my stomach the entire day again and it is once again thoughts are filling my head like I can’t believe my baby is in the cancer club now. I have been so positive and upbeat lately… this has kind of thrown me for a loop. On top of it all, Woody left today and I guess I need him around more than my independent self thinks. I was so spoiled by having him here with me the entire time. He gives me so much strength and we are such a great team. We have a roommate too. I think the little girl is about 11 and has bone cancer. That’s what I’ve picked up on so far. There hasn’t been a lot of time for chit chat. Ronan spent the day walking around some more. Still trying to do everything himself. He is so sweet. Everything is always, “Please help me.” or “Please hold my hand.” or “Please get me a drink.” He says please before asking me to do anything in his squeaky little voice. He is hurting so badly but is too proud to tell me.

I met a new friend today named Ed. He is somebody that my friend, Niki, reached out to after hearing his story about his son, Jack, and his battle with Neuroblastoma. Jack fought long and hard, but passed away at age 5. It was hard meeting Ed today, the pain in his eyes was undeniable. From the second I saw him though, I felt as if I had known him forever. He sat with me for about 2 hours and we talked about everything. It was comforting to me and hard at the same time. He said it was therapeutic for him which I was surprised to hear him say, but it says a lot about the type of man he is. He left me with a big bear hug and I had tears in my eyes. Today was a very special day and I feel privileged to have learned about his journey. He has been through hell and back and is still standing; with a smile and a laugh that will melt your heart.

Tonight, is the first night that I am really homesick. I guess it’s true…. my home is wherever Woody is, because I know that is why I am feeling this way. Also, I really miss the twins. My heart ached when I talked to them on the phone tonight. I hate being away from them. We are almost done with New York though… I am going to make the most of these next couple of weeks. So glad Tricia gets here tomorrow. That is going to make me a lot less homesick.

Ronan is doing well and Dr. Angel (La Quaglia) came to visit. Ronan gave him a big smile the entire time he was here. It’s like the two of them share a secret now… they have a special bond. My friend Pam’s husband, Larry, told me that Dr. La Quaglia walks on water to them. I couldn’t agree more.

My Xanex, that I NEVER take, is starting to kick in. Thank god. I was feeling like I was going to jump out of my own skin all day today. I need a night of sleep without nightmares. My dreams are so vivid anymore. The night before Ronan’s surgery, I had a dream all about it. Everything turned out perfectly, Ronan was fine, and then Woody had to share the news with me that he had an inoperable brain tumor. WTF is that all about?? My baby was saved, but my husband was now dying. I remember everything about that dream so vividly, down to every single person that was in it. I woke up thinking it was real. I’ve never had dreams like this in my life. They are so real, it is scary. Sleep is hard now because I wake up so often, because of a nightmare or because of worrying. Hopefully there will come a time when it will once again be peaceful for me again. WIth that said, head hitting the pillow, asap. G’nite, sleep tight, love to you all.

xoxo

Baby’s incision 🙁