Excuse the rambling novel tonight… it’s just the screaming voices in my head

Ronan. Today was real. I think. I honestly don’t know what is real and what is fake anymore, but here is how my “real day,” played out. Woke up after another restless night of sleep. Went through all the motions of the morning, eg: getting out of bed, showered, dressed, boys up, showered, breakfast made, water bottles filled, lunches packed, drove them to school, sent them off with the usual, “I love you so much. I’m so proud of you both, try your hardest, be kind, help others, have a wonderful day, see you at 3:15…. YES, I will be here to pick you up, please don’t worry.” FUCK. I’m exhausted already. I got into my car, to headed to my appointment with Sarah. Stopped at Starbucks drive thru to grab my breakfast of champions…. Non-Fat, Vanilla Latte, please. Pulled up to the window to pay for my order. The girl goes, “The car behind you has taken care of it.” I looked up; in disbelief. “What??” I replied. “No, no, um…. o.k….. but really??” Starbucks girl smiled, “Yup, it’s taken care of.” I was in awe. “Please tell her I said thank you.” I tried to see who it was, this sweet stranger of mine… but I didn’t want to be all creepy and stalker like. So, I drove off, and waved to the White Range Rover lady behind me. I don’t know if she knew who I was…. or if it was just somebody who felt like being nice today. Either way, it doesn’t really matter. It made me smile and think of you and just the kindness of people in general. It was a great start to my new normal of a day. Thank you Starbucks stranger for making me smile.

I went to my therapy appointment with Sarah. It was good today, as always. I love that I feel like she knows you so well. It brings me comfort that in your last few days, she took the time to come to The Ryan House to sit with me and I let her peek in at you. Or the little shell that was left of you. She loves you. And me. The fact, that she knows you really did exist, and I didn’t just make you up in my head; makes me feel less crazy. Many days, a lot of days; I think you weren’t real. I always knew you were too good to be true. I always knew you weren’t mine to keep forever. My mind still tries to trick me into thinking you did not exist; as protection mostly.

I left Sarah’s and went straight to Dr. Joanne’s office. FUCK. Her session was hard today. Hard as in she tries to guide me to places I don’t want to go to; ever. The retelling in detail about you and your sickness. The way I felt when I finally knew you were going to die. She digs deep, but she does it in a way that it makes me feel safe, yet vulnerable. She has a gift and I know it is going to help me. I cannot deny my pain, anger, jealously, sadness, emptiness, loneliness, and worthlessness now that you are gone. She knows all too well what that feels like which is why I am tying really hard not to hold back with her. It is a lot of work though and I left there today, feeling like I had just relived losing you all over again.

They say scars fade over time…. I don’t think so. I honestly think they just become deeper, but you learn how to live with them and transform them into just being a part of you. Some people choose to hide them, cover them up, and some people may even pretend they disappear. I know this is not true. If I could, I would take a Sharpie Pen and color in all of my scars in black. I would make them say things like, “Fuck you, my child died.” “Cancer sucks.” “Please stop smoking, it really offends me.” I would fill in my scars with all of my angry words, but I would also have them say beautiful things too like, “He was the best thing to have ever been mine.” “Please be kind.” “Please help others.” “Please know how lucky you are, to have healthy kids.” “Please never take a second or your life with them for granted.” I could go on and on with the things I would write all over my body. I would leave them there for the rest of my life so then I could be a walking reminder to people to stop being so fucking ignorant and making up problems. To stop getting caught up in the petty bullshit, gossip, caring what other people think. If you are lucky enough to get to tuck all your babies in bed at night, then life should be beautiful every SECOND of the day. Enough of the wasting energy on things that do not really matter. Learn to be free. Learn to appreciate. Learn to truly be who you are.

I now have to figure out how to live my life this way, without my Ro baby. To me, that is the saddest thing that could ever happen to a person. I now have to make something “good,” come out of Ronan’s death. It is so trite, but as I have said before; I don’t have a fucking choice. I have to learn to live again, the way he would have wanted me to. Which is with fearlessness, feistiness, happiness, honesty, love, laughter, as the free spirit that I have always been; all while breaking a lot of rules and refusing to give in when I really just want to curl up and die. I have to find a new purpose, meaning, and higher power to my life. I have an idea of what it is…. I just have to heal myself a little more before I can fully commit. Go Big or Go Home, right Ro Baby. I know you know.

I’m leaving you tonight in the realist way I know how. With my honesty. You may not like it; but I know deep down, you all appreciate it. Thank you, my lovelies. Thank you for not being scared of the insanity of my brain after having lost a child. Thank you for being brave enough to let go of your world for a little while, to be immersed in mine. Love you all.

Warning: These are real life conversations I’ve had with people in the past few days. I’m only using first name initials, to protect the innocence of those who I hold dearest to my heart. If you’re going to be offended, worried, judgmental….. stop reading. If you choose to continue to read; don’t say I didn’t warn you. This is my life. My honest hell of a life and living inside of my head is worse than any mental institution could ever be. Here goes…….

Conversation via text message 1) I am the green. S is the white.

Gotta love a girl for trying. That S of mine. She is an angel on this earth. Although her words brought me little comfort, I love what she believes in her heart. But I am still telling God to fuck off.

Conversation 2) vía real life: (N) “What are you doing?” (Me) “Thinking about all the ways I can kill myself.” (N) A lot of yelling on her end…. I can’t remember the words she said, so I just started crying. (Me) “Fuck. You asked what I was doing. That is what I’m doing. Do you want me to start lying to you? You know I’m not really going to kill myself, N, because I’m on mommy duty, so guess what…. I’m going to pick my kids up at school, love them, take them for a play date, do their homework with them, laugh with them, feed them, read with them, and do all the normal mommy things that normal mommies get to do, without knowing what it’s like to have lost a child.”

Conversation 3) vía real life: (W) “What can I do to help you sleep?” (Me) “Blow my brains out.” (W) “You know I would if I thought that was best for you. But you have Liam and Quinn to take care of, and you know that would ruin their lives. (Me) “I know.”

I was told by someone, whom I’m not naming, that watching me is like watching a bird who has just had one of its wings clipped. I am like the little bird, whom is trying so hard, with its one wing to fly…. but it just doesn’t know if it can or not. It just doesn’t know if it wants to, again. This person thinks I am stuck in between those two places. Not knowing if I want to fly again, or if I just want to give up and stop trying. It was one of the most painfully, beautiful things I’ve ever had said to me in my life; because it is so spot on. Thank you, my dear friend. Thank you for never sugar coating and for being such a hard ass with me, but in the most gentle way possible.

Ronan, my baby. I’m so tired, that I cannot even see straight. I have to try to get some sleep. Please visit me tonight, but in a nice, peaceful way. PLEASE. I am desperate for you and one of your smiles and winks. I miss your squeaky voice, so, so much. I love you to the moon and back, baby. I hope you are safe.

xoxo

One last thing::::::: The MISS Foundation. I cannot say enough amazing things about it. If you are looking to donate to something, other than Ronan’s Foundation, please donate to them. I can honestly say I was in a deep, black hole before I started seeing Dr. Joanne. I’m still there, but I swear I can see a little glimmer of sunshine peeking through. If you know someone who has lost a child…. when the time is right, please help them get help. It is one of the many things saving my life. It is going to take a team of people; I KNOW this. Dr. Joanne is absolutely inspiring in every way. I am finally starting to come to a place where I can see that I cannot do this alone. Nobody can. As strong as I think I am, I am self-aware enough to know that I need help. Thanks peeps. Sweet dreams. Kiss your babies. As in, get out of your beds, off of your computers, and go into their rooms, and kiss them now. RIGHT NOW. I know you all know how lucky you are. But I also know how easy it is to forget that it is a privilege, NOT a right, to be a parent to beautiful, healthy kids.

http://www.missfoundation.org/bios/jcacciatore.html

xoxo

Ambien insomnia

Ronan. Hello sleep for a few hours, only to wake up with the insomnia that kicks in. Pop another Ambien, please. I’m not sure if I’m supposed to be doing this, but I do it anyway. I cannot believe I now have to take pills to make myself sleep. Seems so trite, but it truly is the only way I sleep now. You know how we used to love our naps?? How we would snuggle up together in the middle of the day and fall asleep so easily? I cannot even do that anymore. Quinn was tired today, so I told him to come and lay down on my bed and I would take a nap with him. I was so tired so I thought we could both cuddle up together and rest. He was out in 5 minutes. Me? Nope. Nothing. I just sat and stared at him, trying to force my body and mind to relax but it wasn’t listening. I had to get up and busy myself instead. The peace that is lacking in my life now is causing me such distress that it is disrupting everything I do.

Your daddy and I met with Dr. Beth today and had a 2 hour meeting with her as she is the one who will be seeing your brothers. She is the one that will be talking to them about everything. We sat with her and did the initial routine, tell me about Liam, Quinn, and Ronan. Before she heard about Liam and Quinn, she wanted to know about you. She then wanted to know the background on your treatments, and the last week of your life. Fuck. Your daddy tried to do the talking. We sat on the couch next to each other, and I was laying my head on his lap as he tried to repeat the story about you, but he couldn’t do it. I looked over and he was choking on the words. I didn’t even know what to do to comfort him, so I just grabbed his hand, squeezed it and took over and continued on where he left off. I managed to tell her everything about you, without crying. It was another freaking out of body experience. I don’t know where my strength came from today, but your daddy was not feeling it so I had no choice but to take over. To stand up strong and take over for him as he is so strong for us, all the time. I told her all about you, your last week of life, how we struggled with deciding what we should do with Liam and Quinn and how we ended up keeping them with you at The Ryan House. She seemed very pleased with our decision, how we kept everything so open and honest. She said she thinks that will only help with the healing process of your brothers. I hope so.

We had to tell her all about your brothers. I realized they were different before all of this but geez, after today, they really are like night and day. One of the first things I said about them was how Liam was basically a carbon copy of your daddy and Quinn was basically a carbon copy of me. Your daddy agreed. Liam is rules, structure, and hard working. Quinn is more of a likes to stop and smell the roses kind of boy. I love how different they both are. It keeps me on my toes.

We talked about Quinn and how we are more concerned about him at this point. He seems to be the one showing the actual signs of being hit really hard by all of this. The separation anxiety issues, his impulsiveness, his insecurities. Some of these issues were already in play before, but now they are magnified by 1000. He is so worried whenever I leave, that I am not coming back. There is no amount of reassuring him that helps. It breaks my heart. Before all of this, you boys had such a secure, consistent life. I hate that Quinn now thinks nothing is true or real, and he knows the truth about things in life. That sometimes, people do not come back. He had the person that he loved the most in this world, taken away from him, and he knows that you are not coming back. Of course he is going to think I am next. Why wouldn’t he. He has such an imagination too so I can only imagine the things he is conjuring up in his little head. I think this talking to Dr. Beth can only help him. We are also going to be doing some things as a family. Therapy wise. Time to dive right into all of this now.

Dr. Beth said that she wanted to let us know, that with everything we had been though, that your brothers grades didn’t suffer at all and there was no disciplinary issues in school, was a huge plus. I told her we had an amazing teacher and amazing in-laws who took care of your brothers while we were away. I told her all about the amount of love and support they had and how they could not have been in better hands. I told her that we kept everything as consistent as possible, but how I basically didn’t get to be a mom to them for a solid 8 months. I told her that I worry that your brothers will think that I loved you more because of all of our precious time together. How I don’t want that to be the case, but it is one of my fears. I want them to know and believe that I love them just as much as you, because I do. But you know, our love is very different then the love I have for your brothers. You know the bond and secrets we share. That bond will never die out. If anything, I think it will become stronger. I’m trying to make up for lost time with your brothers and get our bonds and strengths back. It’s going to take time and I’m not forcing anything. I am just so thankful, everyday, that I have them. If I didn’t, you and I both know I would not be here. They are the reason I am alive. With some help from your daddy too.

So, that I am able to step it up and talk about you while holding it together is so strange to me. I find strength in very random, weird places and the opposite happens when I am out doing normal things, like getting my car washed. I could not believe I went there today and you were not with me. I don’t think I’ve ever felt so lonely in my life. I was sobbing so hard that snot was dripping out of my nose and people were staring. Fuckers. Stare all you want, I don’t care. I’m not embarrassed and if you only knew why I was so blinded by tears that I could hardly see to drive my car out of there when they were finished. That’s when I decided, that’s it…. my life is now going to be lived being blinded by tears. The same thing happened at the grocery store when I had to go again today. Tears all over the store. I’m surprised someone didn’t slip and break their neck on them. I’m surprised I didn’t with the wedge shoes I decided to wear today. Ahhhh… the fashion suffering we do as girls. Totally worth it because those shoes are to die for.

Snot dripping down my nose, I hurried out of the grocery store, right passed a little old lady, who was obviously going through cancer treatments. I started crying harder. I have no idea how I even managed to get myself home as the drive was a complete blur. Was it raining out? Oh no, those were just my tears. Buckets of them as there was nothing I could do to stop them. I got home, unpacked everything, and tried to act normal as Woody, Liam and Quinn followed behind me.

Ro baby. Think I started that post yesterday…. can’t really remember though. I’m sitting here, alone in the dark. My place of preference now. Alone. Your daddy is asleep. Liam, Quinn, Luke and Lily are as well. We had your cousins stay the night tonight. Today seems so long ago. Time is still moving so slowly. What happened today? I’ll try to remember…. but it seems like so much. Started the day off like normal. Woke up, breakfast for your brothers, I showered….. my cell phone rang. Unknown number. I picked it up anyway.

“Hello.”

“Yes, this is Nate, from the Apothecary shop. We are calling about a prescription for Ronan Thompson.”

“O.K.”

“Does the prescription need to be refilled? Because it has not been in about six months so we are calling to see if you want to refill it.”

Silence for a 5 second pause. “No.”

“Alright then. Did Ronan finish his treatment?”

“No actually. He passed away.”

“Oh. Ummmm…. I am so sorry.”

Insert sobbing here. “Thank you.”

“O.k. well, have a good day and once again, my condolences.”

Fuck. Really Apothecary man? Way to start my day. I guess I should get used to things like this but once again, I was not ready on how to handle a phone call like that. I did my best to stop my tears as I head the pitter patter of one of your brothers coming in to tell me something. I wiped them away just before Liam got into my bathroom, where I had just hung up the phone. I don’t remember what he came in to tell me as I had to hurry him out to do something else so I could take a few minutes to pull it together.

Pull it together I did. Finished getting ready. Got your brothers ready and out the door for a play date with your cousins, as they have been dying to see them since we parted ways in San Diego a month ago. I dropped them off for a couple of hours and ran some errands. I picked them up and headed over to their school for meet the teacher day. It went well and they are both excited about starting school on Monday. Me…. not so much. I am going to be a wreck, I just know it. You are supposed to be here with us, I’m supposed to be doing my usual hectic morning thing which was always getting your brothers ready while tending to your every need. Then I would throw you into the car, sometimes in your p.j.’s and we would rush the boys off to school. We would drop them, return home, spend our morning doing things around the house and enjoy our busy afternoons together, just the two of us. What am I going to do without you? I don’t even want to think about it because I know the answer. I’m not going to be o.k. This is never going to be o.k.

I made it through the day though. I made it through the meet the teacher day. Both of your brothers teachers are so sweet. I cannot believe school is starting already. I swear, it just ended. Quinn’s teacher asked how we were all doing. Your daddy gave the usual, generic answer. I couldn’t even make eye contact with her because after I saw the tears well up in her eyes, and then heard her say how she couldn’t even speak about it because it was so sad….. she started to cry, so I had to look away because all I wanted to do was crumble up on the floor and die. I gathered up your brothers instead and told her how excited we were and we would see her on Monday. I don’t know how in the world I keep managing to fight through this world without you. Everywhere I go, everyone I see, whether they know us or not, is so sad or so uncomfortable, or both, that they don’t know what to do, say, or how to act. I know there is no formula for this, but all I want to say is just do, say, or act however you feel. If that is looking the other way, then I’m o.k. with that. I know that not everyone is equipped to deal with a situation like ours and no judgement there. I totally get it. You know what else I do get though, and what I so appreciate?? Are the people who don’t know what to say, so they just nervously say whatever they can spit out. But they do it with such honesty, such realness, and as they are stumbling over their words, inside, I am smiling. Because I know they are being true and honest and it is such a beautiful thing to see. The rawness that many people have shown to me is like a little flickering of a light. It reminds me so much of you, Ro. It always makes me think of you and while they are talking I am usually so focused on witnessing a person using their real, authentic heart to speak to me, and I swear you are standing right there next to me, shining your little light on to them. The people in this world, who choose to stand up, stumble, say stupid shit, because they don’t know what else to say, are some of the most beautiful people I’ve ever met in my life. And when I am told 5 times a day, how I’ve made someone a better mom, a better wife, to appreciate everything they have…… the little devil on my shoulder wants me to punch them in the face because I want to just say, “Well, so glad I had to be the one to lose my son for you to figure all this shit out.” But then the little angel who sits on the other side of my shoulder says, “Look at all this beauty, look how you are making people better people and this world a happier place. You are doing good things with the worst situation possible.” My little sweet angel wins and the little devil goes away. The angel is right. Losing Ronan has happened and he is not coming back the way I want him to. So if that means because of that, mama’s are better mama’s…. people are better people….. then I am really good with that. I feel honored to be able to help as my passion for being a good parent is what my life has always been about once I had my babies.

Being a mama is my favorite thing in life. I am trying to get back there again, but after losing you, Ro… you know I am still in shutdown mode. Unable to feel anything remotely close to love right now. How can I? I cannot even feel myself. I’m taking baby steps and doing everything I am supposed to be doing, but it does not come naturally anymore. It is still forced and I am still a walking Zombie. I do worry now about everything. My mom and dad both called me today but I missed there phone calls but had messages from both of them. I was convinced my brother had died or something. Why else would they both call me on the same day?? I panicked and called them both back. Everything was fine. Quinn has been having headaches and now I’m convinced he has a brain tumor so I want him to get a CT scan asap. Liam seems to be having hearing problems, so I convinced he is going to go deaf. I’m taking all of these *crossing my fingers* minor problems and blowing them up into something so awful, just because of everything we have just been though. I worry so much, all day long, and still all about you, Ro. I don’t like that I truly don’t know where the fuck you are. That is the most fucked up thing in the world. If this world has not figured out where kids go after they die….. with real proof…. scientific evidence….. then they should not be allowed to die. Plain and simple, right?? Not so much. Instead, children die, and their parents have to wander around here on this earth wondering where they are, what they are doing, who they are with, 24/7. I am consumed by this. I am not at peace with anything. And I don’t believe for a second, that if you are a parent, who has lost a child and you have all the faith in the world in God and Heaven and all that jazz…… that you don’t worry about your kids too. Or wonder. Or get scared or sad that they are not with you anymore because they are in a better place. You know the better place would have always been with you. Bottom line. That’s what makes me so angry. Ronan’s life or afterlife will never be better now that he is apart from us. He had the BEST life in the world. Wherever he is now, is not better then here because we don’t get to love on him, touch him, wrestle him, feel him, laugh with him. We were his everything. I’ve never seen a little boy who loved so deeply and he was so loved by everyone much deeper than anything I had ever seen before. I know how this cruel world works. Kids just die. It happens. But it shouldn’t be happening as often as it is. Especially with these cancer kids. Medicine and Science should not be so far behind with all of this. They are failing us and it is unacceptable. GODFUCKINGDAMNIT.

Ro. I’d better stop there because I could start a big swear word party and it could get ugly. Too tired tonight. I know you know who I saw today. One of your favorite lovies. I brought him our coffee, we sat and chatted. I was quiet today, which is not like me to be with him, usually I don’t shut up. I sat back and listened to him talk and threw in my  sassy pants remarks back his way once or twice. I had to have a little fun, as I was so sad today. I felt like I was walking around, just carrying my heart around, outside my body, in my hand. I wish I would have been. I would have said “Heart for Sale!’ ‘It’s healthy, beautiful, but badly broken. Maybe unrepairable.” “Great price, for a good, healthy home.” I would have given my whole heart away today to someone who could really use it. I am wasting mine, it is only causing me extreme pain, like heart attack pain. You don’t have your heart anymore, Ro, so why should I have mine? I don’t want it. I think I will sell it on the black market or something. I only want my heart if you have yours. Your is currently in a ziplock filled bag of ashes in your urn. FUCKING FUCKED UP……… I cannot even believe this. You were here, not so long ago…. and then you were just gone. Gone. Heart stopped beating, lips turned blue, feet cold as ice, body so stiff, your eyes… those insanely bright blue eyes, now a dark shade of blue. Your soul left way before your body did. I watched it happen. I’ll never get over that. How big, strong, and beautiful you looked. I must have kissed your cold lips a dozen times. I’m so sorry Ronan. I’m sorry to your Daddy, your brothers, I was supposed to fix you. Our love was supposed to get you all better. How did it not?

Ok. I’m blinded by my tears again. Have to get to sleep. I love you, Ro to the moon and back. Sweet dreams my “not Spicy” monkey boy. I love you so much. I hope you are safe.

xoxo

Just say no to death do us part…….. time to update wedding vows people. What if your child died? Did you ever think about that while saying them???

Ro

Ronan. Hi my love. I hope you had a good day. That sounds so weird to say, because how could any day possibly be good when we are apart?? I miss your giggles so much. The world is so empty without them. I know I say this all the time, but I would give anything to have you back. I tell you all the time to please take me with you. I know you can’t, as you wouldn’t do that to your daddy or brothers but I miss you so much.

Today was a long day. The kind of days that I seem to have pretty often now that you are gone. I managed to keep Quinn busy though. We hung out at our place and then I took him and Olivia for lunch. We came back to the condo after and hung out. Olivia helped me clean everything as we needed to get ready for Liam and Papa Jim’s arrival. She is such a big help to me. Quinn looks up to her like a sister and she is a really good playmate for him. He gets lonely when she is gone as he loves having her around. I do too.

After we cleaned, we got ready and met up with Liz. The 4 of us walked and had sushi. It was a nice dinner but it always feels weird to be doing things without you. Between, Quinn, Olivia, and Liz, I was able to keep it together as they all provided much laughter. We walked around the island a bit and started making our way back to The Shores. As we were crossing the street, I looked up at locked eyes with a mama who was pushing her little boy in a stroller. I was dying inside because of her little boys amazing, curly, red hair. I smiled at her and she looked at me and goes, “Maya!” She approached me and introduced herself and gave me a warm hug. She follows this blog as does her sister whom I had the pleasure of meeting as well. We have mutual friends and the friends we are all friends with are GEMS….. so I know these two women must be as well:) We chatted for a few minutes and I managed to only get choked up once. It was so sweet, so rewarding, and it just felt good to hear them say that they think about you everyday. How I will never be without you because you live in each and every one of them. How you’ve inspired them to do something more with their lives. Nothing will ever be worth losing you for, Ro. But in losing you, people are finding what it truly means to live a life you are grateful for. Do I hate that it has to be you and me teaching this lesson? Absolutely. But we cannot control our fate, our destiny, what is being set out in front of us. It is not up to us so we have to just give in and trust that this is what our purpose in life is supposed to be. To help others see their way, to help them be more grateful and kind, to let them help us by raising awareness for you and Neuroblastoma or childhood cancer in general.

As I was talking to those two beautiful ladies today, I honestly felt you there by my side. It was weird. At one point, I looked down at my feet to see if you were there. That is how much I felt your presence. I then looked over at Liz and gave her a teary smile. Liz is my home, my heart, part of my soul. She gets it. She knew you were there today too….. I could tell just by looking at her. I was honored to meet both of you today and just wanted to tell you thank you again for loving and supporting strangers whom you didn’t even know, until today. I can’t wait to see you again.

After our “meeting random strangers,” whom I don’t know but they pretty much know everything about me…. which is weird but I’m oddly comfortable with it….. we went back to our condo. It as time to get ready to pick up Liam and Papa Jim at the airport. It’s been nice having some one on one time with Quinn. He’s really opened up to me and we had some pretty intense conversations. He is like a little sponge and never forgets anything I do or say. I got to watch him open back up to me again and he told me how hard it was on him to not have me around to take care of him when Ronan was sick. I told him I knew, and that it was hard on everybody. But we didn’t have a choice. We had to take care of Ronan the best we could and I’m sorry that I had to be away from him for so long. I hope he will forgive me. I would have done the same thing for him and I tell him this all the time. I just hope he really believes it. An 8 year olds mind is such a fragile thing when dealing with a tragedy. I don’t have all the answers and this is when the therapy will come into play when we get back. I recognize that we all will be needing it pretty intensely.

I was thinking about this the other night on one of my runs. For some reason I started thinking about wedding vows. The whole, “Until death do us part.” I couldn’t stop thinking about it and I thought to myself, I’ll bet when people say those vows, they don’t take into consideration if the child would be the one to die….. would death do them part?? I think people say that vow just thinking of one another, as man and wife; never a child because that is just too horrific and does not happen. WRONG. BIG FAT LIE. It happens. And I am so freaking glad Woody and I did not say those vows to each other. Not that they are awful…. but we are just different. We had E.J. Kotalik marry us because it was important to us to make them a part of our family. I never knew how much we would truly need them. We now need them more than ever. We didn’t read the traditional vows. We read a poem by E.E. Cummings, instead. One of my favorites:::::

i carry your heart with me (i carry it in
my heart) i am never without it (anywhere
i go you go, my dear; and whatever is done
by only me is your doing, my darling)
i fear
no fate (for you are my fate, my sweet) i want
no world (for beautiful you are my world, my true)
and it’s you are whatever a moon has always meant
and whatever a sun will always sing is you

here is the deepest secret nobody knows
(here is the root of the root and the bud of the bud
and the sky of the sky of a tree called life; which grows
higher than the soul can hope or mind can hide)
and this is the wonder that’s keeping the stars apart

i carry your heart (i carry it in my heart)

It was perfect for us and still is. And whomever is telling my mom the statistics for people who divorce after the death of a child….. Seriously needs to stop. This is not something a grandmother who has just lost her grandson and who is worried sick about her daughter, needs to hear. I know the statistics, Woody knows them. We know who we are. We know that throughout all of this, we’ve stayed on the same page with pretty much everything. We know we are each others best friends. He has my heart and I have his. Forever. End of story. We don’t do drama, we don’t do hurt, we don’t do fighting (unless you count the time I threw a slurpie at his head) We do love. We love our twins. We love each other. We are not going to let cancer ruin anything else for us. MOTHERFUCKERCANCER. You’re not taking anything else away from me. You took the most precious thing that has ever been mine and I will fight you until you die and exist no more. YOU FUCKWAD.

Oye! Ronan! I’d better be signing off now. Before I get too bloody out of control! I love you my not spicy favorite monkey. I hope you are safe. I hope someone is taking good care of you. I just want you back here with me. Please. This life is too hard without you. I LOVE YOU TO THE MOON AND BACK RO.

xoxox

Losing you is like somebody just turned all the lights off

Ronan. I had a bad day. A day where I didn’t get out of bed until 1 or so this afternoon. I am in a funk and I can’t seem to shake it. I cannot shake being in this condo, which as I told you before, is exactly like the one we stayed in when you were so little. Everywhere I turn, I expect you to come running into the room. I think about you 24 hours a day. Today, everywhere we went, I was reminded of you. I hope someday this makes me happy, but as of now, it only brings me to tears. We had a family day out today. Once I was able to get myself out of bed that is. I tried so hard to enjoy life today, but the screaming in my head kept me from doing so. I can put on a good enough show to fool your brothers though. Thank god I’m such an amazing actress.

We took your brothers for pizza and wound up at the movies and saw, “Kung Foo Panda 2,” together. Seeing a movie used to be one of my favorite things to do. Now, it is so hard for me to sit still and focus on a thing and I was so grateful when your daddy asked for a refill for our soda,  so I could be the one to get up and get it. Before all of this, it was always your daddy’s job to refill our pop for us. Just something silly that I would always insist on him doing. Now, I happily was the one to do this for him tonight. I was crawling out of my skin during that movie. At one point, I started to cry. I was sitting between your daddy and Quinn. Quinn was holding my hand and saw the tears. He just took my hand and kissed it. I kissed the top of his head and told him I loved him. The movie was actually really cute. I know you would have loved it. It was all about finding your inner peace to be the best you can be in life. What I wouldn’t give for that. I used to have total inner peace. It is so hard to finally achieve that in life and then to have it ripped away over circumstances that you have no control over. You were the creator of my inner peace. You completed it all. Will I now forever be tortured, destroyed, and half of a person?? Walking around so numb and in so much pain that I am just thankful to make it though another day without you just so I can go to sleep in hopes of seeing you. Because that is what my life is now. I am trying my best to find the joy in the beautiful things that surround me, but the world seems so ugly without you. It’s as if the blue sky has disappeared, the birds have stopped singing, and the sun has stopped shining. I am thinking I am becoming severely depressed as I’m so tired of this life without you.

We are not going to Washington this summer to see Nana and Papa. It’s the first time that I haven’t been home during the summer in 18 years. Washington summers, especially after I had you boys, has always been one of my favorite places in the world. And to think last year, when we were there, your little body was so invaded with cancer. And we had no idea. We had the BEST time, just soaking up nature and enjoying the simplicity that comes with being there. It has always been such a peaceful place for me but this year, the thought of going there is much too painful for me to process. I’m so sad about missing the time with your Nana and Papa Jim as having you boys there for the summer makes their entire year. I feel like I’ve let your brothers down as they have been asking to go. I told them maybe for Fall Break. I tried to explain why I can’t take them there, but I don’t think they truly understand. I suppose anywhere we go, is going to be painful. But for some reason the thought of going to Washington without you is something I am not ready for. To be in my old bedroom, from when I was a teenager, where we spent every year, for the past 3 years together, snuggled up in my old bed…… I just can’t do it as of now. I don’t have the strength and that whole inner peace thing that I am now lacking would eat me alive if I were there. I’m sad about it and you know how much I am going to miss the time with Nana and Papa Jim. It is the first summer of missing so many things. Most of all, you.

So, I started reading this book called, “Growing up in Heaven.” I’m about 60 pages into it and I am really trying to keep an open mind about it as well as the author, as he claims to be a Medium whom can bring to light the journey of children who have passed from earth to heaven. You know I am all for that Medium stuff and I was hoping this book would give me some peace of mind. The first chapter or so, I was really getting into it. I then made the mistake of Googling this James Van Praagh guy as I was convinced that I needed to seek him out, asap, so he could help me get to you. Bad idea. As soon as I got to this guys website, I was instantly turned off. There was NOTHING authentic about it. It’s all glitz and glamour…. and it felt fake and phony. But guess what? For the small price of 4 grand, I can take a cruise with this dude and he will do a reading for me! I think I said it best when I sent a text today and it said how I was reading this book and how I was about to call BULLSHIT on James Van Praagh and his exceptional gift for communicating with the dead. So, I’m guilty. I’m totally judging a book by it’s cover. I’m a skeptic. Not because I don’t believe in things like this, because I truly do think that there are many people who are blessed with extra spiritual gifts in this world. But this man is talking about how the child’s spirit just comes to him and he is able to see them plain as day. I wish I could say thank you to this man because according to him, you are up in heaven, where everything is white and colorful, riding a fucking Shetland pony, all while getting an education AND helping others. If he would have left shit like that out, I may have bought what this guy is selling. Some of what he says, seems to be spot on with what I believe in about a person’s soul…. but the other stuff just seems like smoke and mirrors to me. He sure does have the part down about the grieving parent role though. Although, it is not rocket science. No shit that I feel like I have lost my identity, that I am in a robotic state, that I am numb. And no shit that physical fitness is a wonderful way to deal with stages of grief because I HAD NO IDEA that exercise releases endorphins into the bloodstream! This guy  is a genius!!! Oh Ro….. I have no idea where this feistiness from me has come from tonight…. you must be hanging around, channeling it into me. I loved it when I would call you feisty and you would scream back to me, “I NOT SPICY!” Still makes me laugh on the inside all of the time. I miss your little voice and how you would call me, “Mama.” Never mommy or Mom. Always mama. I miss it so much.

Anyway, back to the book baby. I’m being awful about it. But I’m going to finish it and I hope that I do end up believing in this guy because I would love nothing more, besides the obvious like you coming back, than to think that you are up in heaven, playing with your pony, helping others, and that you are so happy and free. I would love for that to be the truth because if you cannot be here with me, that is exactly where I would want you to be. Except the pony thing is a little weird. I’d rather have you playing with Master Yoda and Captain Rex instead.

I’m tired tonight my sweet boy. I’m going to take my Ambien and go to sleep with your brother, Quinn, who is right next to me. I love you so much. To the moon and back, forever and ever. Just you and me. Sweet dreams my monkey. I hope you are safe. You are forever loved.

xoxo

I wish Neuroblastoma was an April Fools’ Joke

Last night, I left Sloan beyond beat due to our traumatic day. Woody came and met me and we swapped places so I could sleep at the RMH and spend a little time with Quinn. As soon as Quinn and I stepped outside, we were hit by all the rain. I wasn’t prepared at all… ballet flats on, no coat, no umbrella, etc….so the two of us held hands and we ran as fast as we could back “home.” We splashed in every puddle along the way, laughing the entire time. It was some much-needed simple fun. As soon as we arrived back to the RMH, we ran into my new friend who lives there, Doriet and her little girl, Ester. Doriet got a big kick out of how soaked we were and hurried us up to our room to get warm. I am just starting to get to know her and LOVE her. When I told her a few days ago that Ronan’s bone marrow was positive again she looked at me and goes, “So what. That doesn’t mean anything.” She is full of tough love which works for me. Seems that I respond well to her kick ass attitude and she is the pillar of strength. An amazing woman, mama, and wife to say the least.

Quinn and I warmed up and snuggled in bed together and slept peacefully all night as we listened to the rain outside. I didn’t wake up until my phone went off at 10 a.m. EST with a text from my Mr. Sparkly Eyes telling me he hoped today was a better day. I thought to myself… It HAS to be. I don’t think I could handle two yesterdays in a row. On our way to Sloan, we stopped at Delizia’s so Quinny could get a slice of pizza. He must have told me he loved me and thanked me a half a dozen times while we were there. Such a little love bug. I’m going to have a hard time when he leaves on Sunday. Once we arrived at the hospital, I found a sleepy Ronan and Daddy cuddled in bed together. I quietly woke Woody up to let him know he could leave, but he ended up staying for a few hours and working from the hospital. Quinn stayed in the playroom on 9 by himself and then met us on 2 so he could see Ronan at Radiation. It was the highlight of my day; watching my two boys laugh and play for the 20 minutes that we were waiting. Lots of laughs and giggles from them both. After RT, Woody and Quinn left and I stayed at Sloan. Ronan’s mood is so much better today. We have been playing a ton and he even let me hogtie him up while we played Cowboys and Indians. He is now quietly laying down and watching a movie. I think I wore him out! We are waiting for Woody and Quinn to get here and I asked the nurse if she could block off the playroom for us so Quinn could play with Ronan for a bit and we could have dinner as a family. She agreed to do so. Very nice of her as it’s the only way Quinn can be on the floor with Ronan for an hour or so. Better than nothing.

This weekend will be spent here, inpatient. Dr. Kushner came to see us today and said Ronan’s counts probably won’t come up until Monday or Tuesday. Yowzer. I am trying to make best of this and luckily, this hospital is really good about keeping the kids entertained. Lots of arts and crafts, funny clowns, the Candy Cart, etc….. I am just thankful that Ronan looks a million times better and he finally has his giggle back. It’s really hard to go a day without it. He is happy for the most part, although he asks me all the time when he can go back to Phoenix and says it’s not fair and he misses his home. This kills me. I just keep telling him that we will go home as soon as we get him better and that we have to be strong, keep fighting, and never give up.

Today, I was showing him his little lunch box with his name embroidered on it and I was spelling out the letters of his name for him. He looked at me and goes, ” I like it, but why doesn’t it say Rockstar Ronan on it?? I burst out laughing. Cutest thing ever. He spent the majority of the day playing April Fools jokes on me. He would tell me things like he had to go to the bathroom, and I would get him up to go and then we would yell out, “April Fools!” He must have done this a dozen times today. So glad my little prankster is up to his old tricks.

Ronan and I just got back to our room from our Friday Night Pizza Party. Woody and Quinn brought us pizza and we sat in the playroom and ate together as a family. Ronan was in a very playful mood and he is now tucked into bed watching the new “Clone Wars.” I’m going to cuddle up to him as he is getting sleepy. I am planning on slipping out soon and Woody will stay the night again. So thankful for that… I sleep horribly at the hospital and I really want to spend as much time as I can with Quinn before he leaves. I hope you all have a lovely weekend. Thanks for checking in!

xoxo