Tag: soul mates

A date where no pants are required

 

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Ronan. Another week done. Another week closer to your baby sisters arrival. A lot happened this week for nothing happening at all. I’ve spent most of the week doing I don’t even know what. Taking care of your brothers has kept me pretty busy. I feel like I’ve poured everything I have into them just so they know how very loved they are. There is a new baby coming. I am trying to be fully aware of everything they may be feeling with this. How does a 9-year-old process the death of their little brother and soon after that, the birth of their little sister? I have no freaking idea. So all I am doing is talking with them as openly as I can while pouring every single ounce of love and affection I have to give, into them. Liam finally got his new glasses and has been wearing them around the house and when he is out and about with us. He looks so handsome in them. He won’t wear them to school yet and I’m not pushing that on him. I’m just trying to let him get used to them first. I wish you were here to see him in them and how proud he looked when he put them on and looked in the mirror at himself. The first time he put them on in the car he goes, “Wow! I can see perfectly!” It made me laugh and broke my heart all at the same time. My sweet gentle giant. He slept with your daddy last night and I curled up in Quinn’s bed with him. Quinn must have told me 10 times how much he loves me. I snuggled up with him as we fell asleep. I always picture how it would be if you were here. I know you wouldn’t be sleeping in your bed but you would be snuggling up with your brothers instead. You loved being with them so much.

I saw Dr. Jo today for some therapy which included the chocolate cake she had waiting for me when I arrived. BEST.THERAPIST.EVER. We hashed out the weeks events. We talked about this Poppy girl and her birth. I told her I didn’t think I could make a specific birth plan for her because as with everything I do, winging it seems to be the best and works for me. I know she will be there and that is good enough for me. We have talked about having your Urn in the room with me. My only hesitation with that is that somebody might break your urn and ashes will go flying everywhere. But I think having your urn in the room with me as something to focus on might be good for me. We will see. I feel like I have been crying a lot. Crying when I’ve been hiking. Crying in bed. Crying when I’m driving. Crying over every song that comes on the freaking radio. My tears seem endless lately. It is just because I miss you so much. I just miss my best friend. I just miss my spicy monkey. I just want you back in the worst way possible. Dr. Jo asked me today when I thought I would be ready to forgive myself. I told her I didn’t know. That maybe Poppy would tell me when it is time in a secret way and only I will know what it means. Maybe you will let her know when it is o.k. for me to forgive myself for all the things I hate myself for that I know are truly not my fault. I think your sister is going to bring so much light into our world that I so very badly need. I think she will be able to hold my hand through this darkness in a way that nobody else can. I cannot believe she is almost here. I am so glad because I truly do not think I can wait much longer for her. I know I will be able to breathe much easier once she arrives. Both literally and figuratively.

It’s kind of been breakdown city over here this past week. It’s been one of those weeks where I feel like I have the weight of the world on my shoulders. I walk around every single second of every single day knowing that you, the love of my life, died. I never for a second forget that. I constantly feel like I am just here, doing my best, but blindly stumbling through this life without you. I never forget that I don’t have your hand to hold, your little lips to kiss, your messes to clean up, your hair to wash, you to dress or tuck in at night. Some days, I don’t know how I live without being able to do all of those things with you or for you. What I wouldn’t give to be cleaning up your messes or wiping up your puke from the flu. Even when you were here, doing those things, it was never an annoyance to me. I never got mad or upset or complained about the lack of sleep or things I was “missing out” on because I was just so thankful to have you. Even before you were sick, I knew what a gift you were. I don’t understand how you are now sitting on top of my dresser in a fucking urn. I still don’t understand how this all happened. I promise I am doing my best, Ronan but it feels so hard at times. I still know you miss me as much as I miss you. I still know we were never meant to be apart. I will forever think that this is so wrong and so beyond fucked up.

Today, Dr. Jo asked me if Inferno Fuckwad Bob was still around. Meaning my nickname for my grief. I told her yes, but I didn’t hate him as much as I used to. She told me she knew that would happen as it’s part of this shift. How her grief has become one of her best friends. I nodded my head and told her that made sense as our grief is never going anywhere. She goes “That’s right. So we may as well invite him in for a cup of tea.” I understand now. I can’t spend my whole life angry and fighting with my grief. I live with my grief 24 hours a day, so I’d better learn how to make the best of it. Your daddy went to the Suns game tonight. Your brothers are at a birthday party. If you were here, we’d be off doing something fun. Instead I sit in our house and cry for you, alone, the way I like it. Sometimes I have to take a break from the outside world. It’s still hard for me to be among the normal, happy people of the world. I’d rather sit here with my best friend, Inferno Fuckwad Bob instead. At least I don’t have to wear pants for our date.

I miss you. I love you. I hope you are safe. Sweet dreams, baby doll.

xoxo

 

Wake up, throw up, go back to bed.

 

 

 

 

Ronan. I am not used to living a life where I am physically chained to my bed. That’s how it’s been this past week. I cannot seem to function. This extreme fatigue and nausea, are mentally beating me down. I’m used to being the energizer bunny. Go, go, go. Get this done. On to the next. No sleep needed. No eating required. Crazy workouts. Although my routine seemed crazy to most, I felt like I thrived in it. Now, since this vampire baby seems to be sucking the life out of me, I can hardly get my head up off of my pillow in the mornings to take your brothers to school. Then I usually come back home, do a few things, but fall back into a coma like sleep for a few hours. I wake up exhausted. Throw up. Get a few more things done. Lay down again. It’s fucking depressing, to say the least. Your daddy keeps telling me that I’m wiped out due to growing a home for your baby brother or sister. I am trying to relish in all the beauty of this but it is secretly making me hostile. I don’t do well with things that slow me down. I miss my workouts. I miss being on the go 24/7. But most of all, I miss you. I got up to do a few things yesterday. I went to see Dr. JoRo. We talked about a lot of stuff. How I am trying to manage everything like my stress level and this pregnancy. I told her the awful dream I had about you and how my memory of you was completely gone. I could hardly get that story out without choking on my tears. I left her office, feeling tired and sad.

I came home and fell into a deep sleep. I’m telling you, it’s all I can seem to do lately. I sent your Mr. Sparkly Eyes a text. “Is this normal? I don’t think this is normal. Do you think I’m dying? I think I’m dying.” He promised me that I was indeed not dying and to stop overdoing everything. He called me a control freak and told me to settle down and to start listening to my body instead of fighting everything. He made me promise that I would rest and put my feet up. I told him I would, but only because he told me to do so. I listened to him like I always do. He always knows best. I spent the rest of the day, resting and trying not to be resentful for it. But truthfully, this slow paced living is pissing me off. Especially when I have to be at home, in this fucking quiet house, without you. I’ve spent about the past year, avoiding our house during the day, because I hate it so much without you here. Now I feel like I am in prison. Trapped inside my own personal hell with your little bedroom down the hall, untouched like you are still here. I wander in it during the day, looking at the last drawing you did on your easel with a permanent marker on the chalkboard when I told you to use chalk so you wouldn’t ruin it. You have no idea how glad I am you didn’t listen to me on that one. It’s one of my only drawings I have of yours. My days feel so sad and lonely without you here, and with me, being stuck at home because I am literally too tired to function. I don’t remember it being this way with you and your brothers, but your daddy says he does. I am blaming it on my old age;) 34 feels a lot different from being pregnant at 25 and 29. 34 and being pregnant can suck it. I know this is what you would want. But it still feels a little like a betrayal to you. Your daddy keeps reminding me how much you wanted a brother or sister. And I keep reminding your daddy that yes, that is right, but it is also because you thought you were going to be here to help take care of him or her and be the best big brother ever. I don’t think you ever knew you were going to die, Ronan. I truly think you thought you were just going to go to sleep and wake up once again, after we got you all better. It destroys me everyday that we now have to physically be apart and I can’t take care of you, look after you, or keep you safe. There is no better place, then here with me. NOWHERE. I will never be o.k. with you being somewhere else. You were supposed to be with me, for the rest of MY life. Not the other way around. I am so sorry that you had to be taken away. That you had to be robbed of our beautiful time together. You should have been the one, watching me die from old age. I should to have been the one watching you die at only almost 4 years old. My heart will forever be broken in a way that is just not repairable. I will fight on, not because I am strong but because I won’t fail you or let you down. No mother is strong enough to survive something like this. A mother doesn’t survive something like this. I didn’t survive this. I died when you died. I just made a choice to get back up and live the only way I know how to live now… by fighting for you and all you were robbed of. I continue on because I know that you want me to make this better for others. It’s not my choice, it’s yours. I choose to live to honor you and everything you stood for which was strength, courage, and fearlessness. I live on, for you because I love you so much. Everything I do is for you.

I came home yesterday to the sweetest thing on our porch. It was a balloon with a card and a little baggie attached to it. I opened the card and it was from some girls that live in our neighborhood. They had spent the last 4 days, selling cake pops and had made about $73 dollars. They said they wanted to help find a cure for cancer and know I would put it to good use. I felt a wave of goodness wash over me. What amazing little girls. I know this lesson they are learning in life and about your story will shape them in a way that they will go on to do amazing things. I feel that way about everyone who hears about you. If that wasn’t enough to make me cry, the next thing was. I opened a letter from someone saying how they had heard your story, wanted to help, but they only had 1 dollar. They taped the dollar to the letter and said they were giving it to me. Then the next letter, from a mom, who’s husband is working 3 jobs, they have nothing, but she cleaned out her change drawer. My cheeks were soaked with tears after being hit with those 3 things. Thank you, sweet strangers. I hope you know I am thankful for you taking the time to learn about Ronan and for every single penny that comes our way. I am going to build something amazing with it. Something unlike anything that has ever been done before. Something these families and kids so deserve when going through something like this. This will be your legacy, Ronan. This will be how you live on and help others. This is my purpose.

Your daddy went out last night. I fell asleep early while your brothers played some zombie fighting video game in the living room. They kept coming in to check on me. I was out cold. It was around 10, that I heard them both crawl into bed with me. “Goodnight, mommy. Goodnight, Liam, Goodnight, Ronan.” Quinn said. Liam chimed in, too. “Goodnight boys, Goodnight, Ro.” I managed to say. I woke up around midnight, your daddy still gone. I looked for me 3 boys in my bed, but I only saw two. I punched a pillow and went back to sleep. I am awake now. It’s early in the day… around 5 a.m. I am up due to feeling sick to my stomach from this Poppy that grows in my belly. I hope today I can manage to be a little productive. Liam and Quinn have a basketball game. You would be so proud of the way they are killing it on the court. Quinn had 18 points last weekend. I know this would be your sport too, if you were still here.

I miss you. I love you. I hope you are safe. I love you to the moon and back, baby doll.

xoxo

 

Cancer is a whore. My friend, Robyn, told me so.

 

Ronan. I am tired. Living this life without you is exhausting. I hardly remember the days when I used to think you wore me out due to your never-ending energy. I used to think taking care of you was a lot of work. Well, let me assure you, taking care of a dead child is 100 times more exhausting. It is 100 times more exhausting than the temper tantrums, throwing up, crying, teaching, arguing, potty training, bathing, feeding, reading, singing, playing, snotty noses, laughing, loving, and all the other beautiful things that come with raising a child. Taking care of a dead child is 24 hours of pure and non-stop torture that on days like today, leaves me feeling more exhausted than running a fucking marathon.

We are still in Washington. I do well here. It’s no secret. My heart is not in AZ. I won’t live there forever. There will come a day when I will leave. Your daddy knows this. He is on board with this. He will go wherever we decide to go, as a family. I’ve already thrown out a few places as options. It’s a decision we have both made. My heart does not belong in that state. It never has. I have only a couple of things keeping me there, as of now. But those couple of things mean too much to me to leave. As long as they are there, I will stay there. I’m not saying what or who they are, but I know you know. Because you’ve always known. Right now, we are there because it is where we need to be. Because right now it is what is best for Liam and Quinn. I can put myself aside for the sake of the two of them for the time being. I can sacrifice myself for those boys’ no questions asked. But Phoenix leaves me feeling restless and chaotic. The only peace I get is when I am hiking up a mountain in 110 degree weather. That tells me right there, that there is a problem. I know what my main problem is… that being not having you anymore. But Phoenix only seems to add fuel to the fire. I can make due for now. I can be thankful that we have your Nana’s house to come to so that I can have a little peace and quiet. I can be thankful for things like rainy summer days, scratches from sticker bushes, muddy feet from exploring the never-ending rivers/streams/ponds that surround us… I can be thankful that your brothers have this place to come to, to experience childhood the way it should be. Simple, calm, and beautiful. You don’t get much more beautiful than this state. I have always thought so. It makes the 8 months of rain, totally worth it. But I am also a big fan of the rain so I may be biased. I am an even bigger fan now because I feel like my body and soul are in a constant state of rain due to all of my tears. It’s nice to not wake up to the blinding freaking sun every single day. The mornings here are damp and foggy. The air is clean. The sun comes out just in time to kiss my lips for a few hours and then it goes back to sleep. My heaven.

I’ve been doing a lot of playing with your brothers. So much playing that we are all 3 falling into bed and we hardly have the energy to say goodnight to one another and you, before it’s lights out. That never happens in AZ. It’s been a constant stream of baseball, board games, swinging, basketball, and Papa time. That Papa time is my favorite time of all. Your papa and I took Liam and Quinn to Mount St. Helen’s yesterday. The world that I watch Liam and Quinn slip into around him is magical. It’s one of my favorite places to be. The laugher and adventures are endless. He is the youngest 72-year-old that I have ever known. It’s like I’m watching 3 kids play whenever I am with him. He was one of your best friends and vise versa. He misses you so much. Yesterday, when we stopped to explore a little bit, we were throwing some rocks into the water. There were a ton of sticks and wood pieces floating around. The kind that you used to make your papa load the back of his truck up with. “More papa, more!” you used to yell to him. We would always bring home 10-20 pieces of wood and sticks for you. Your papa found a really good one yesterday and said, “I’d better get this one, for Ronie.” “Ronie, Ronie, Macaroni!” he would often sing to you. I just looked at him and said thank you. What I really meant was thank you for being the best step-dad ever. For being the best papa ever. For being the best friend to my 3 boys. For never forgetting you, Ronie, and for never being afraid to talk about you, sometimes like you are still here. I know how hard this has been for him. He loves you so much. He would have traded places with you, in a heartbeat. I know he is constantly asking himself why you and not him. We all are baby boy; we all are.

I think about you all the time. I told your Sparkly that I swore I think about you, 24 hours a day. He said he knew. I know he knows this because he thinks of you everyday too. He misses you. I have been thinking about a lot of things lately, trying to give myself some peace of mind which won’t ever happen, but I need just a sliver of it, to get me through this. For me to say that I 100% know where you are, who you are with, and what you are doing is something I am not willing to eat up on a plate of bullshit. Hello! Am I the only crazy one out there, who will admit this?!! NOBODY REALLY KNOWS where you are, Ro baby. WTF! I can fully respect what people believe… but I am so tired of hearing, “Oh, hello… I am 100% sure of where Ronan is. He is safe and happy and he is where he should be. ” Fuck off people. That is not the right way to approach me. Why don’t you just be honest and say, “Oh, hello… I don’t 100% know where Ronan is, but this is what I believe.” Thank you. I can deal with the “I believe part.” I don’t have a problem with the “I believe part.” I won’t even tell you to fuck off. I will politely smile and tell you thank you, instead. I just want some freaking honesty. Is that too much to ask? I don’t think so. Unless you are officially hanging out in heaven, with Ronan, dancing on clouds and then you get to come back here and tell me about it, and put it on a DVD for me to watch…. I am not going to 100% be sure of anything. That’s honest. That’s real. It fucking sucks but I am not willing to sugar coat the life and death of my child just because it makes other people comfortable.

I know what I think I believe. I know what I think I don’t believe. I know that I am still learning and growing, but no matter how angry I get, I still have a shred of faith that I hold on to. It’s dear to me no matter how different or how out of the norm it is. I don’t like normal. I grew up with a dad who used to mediate on top of compost piles. Is that weird? Maybe to some. It wasn’t weird to me. It was his way of teaching me to love nature and the world around us, but mostly to connect to ourselves, our hearts and our spirituality. I know that my beliefs are ever-changing and ever-growing. What I believe today, may not be the same, tomorrow. I find that fascinating and it makes me proud that I have the strength to question everything out there when I could easily just believe in it all, instead. If I want to question if the sky is blue and the grass is green, that is my business. Nobody has the right to try to take that away from me. Not even God himself.

I found a picture of you today, Ronie. I don’t know if I’ve ever called you, Ronie, on here, P.S. Which is weird… because I used to call you that all of the time. Anyway, it was your preschool picture. The one where I can vividly recall the day so well which is unusual for me due to not having much of a memory anymore. You are so beautiful. I put you in one of your favorite orange shirts. Your hair almost matched it in the picture as the color of your hair was so unusual. A copper color almost. Blonder in the summer, but copper was the true color of that mop of hair of yours. I stared at that picture for a long time, before tears sprang to my eyes. I sent a couple of text messages to Dr. JoRo and to my new friend, Robyn. I haven’t really talked about Robyn yet because it just hasn’t been the right time. It’s only been within the last few weeks that we have started to get to know each other. Even though we have more in common than I would like. We both have dead babies thanks to that fuckwad, Neuroblastoma. We met at the NB conference in Austin, Texas. We went out afterwords as a group and I quietly sat back and watched this girl who continued to crack up the entire table with her witty comebacks, smart mouth and silent gun shooting laughter (because she says no sound comes out when she laughs so she shoots guns with her hands instead) Ummmm… who is this girl and can I please be her friend? I got to know her story a bit. I later learned that she not only has one dead child, but two as she had twins after her son, Ezra, and one of them, Price, died due to complications from a very early delivery. It took me a while to wrap my head around this. Wait, two dead babies? Her? Not possible. Not this drop dead gorgeous, funny, young thing sitting right in front of me. Not this gorgeous creature who looks like she is about 19, but has the pain in her eyes of someone who is 3 times her age. But she looks happy. And she can laugh and be carefree and funny! All of the voices in my head were saying, “Whoa. What’s wrong with you? This girl is alright. This girl can function in the normal world. And she has 2 dead babies! Why can’t you?” I left Texas being totally intrigued by this Little Miss Robyn thing. Our friendship has now developed over a series of Instagram/Twitter/Facebook/Texting love. I told her that it had to be the two of you, you and Ezra, who are the one’s making our friendship blossom. Because you know we can help each other, through this. I truly think this is the case. Now that I’ve gotten to know Robyn a little better, I can see that she still hurts so badly from losing her babies. That I know she thinks about them as much as I do you. That will never change. Things will never be alright or better. They are just different. And somedays, different can be o.k. and you can still smile and laugh, but the pain never fades away. As she puts it, it moves from your skin to your bones. It never goes away. I sent Robyn that text below tonight. She called cancer, a whore! I told you we were meant to be friends!

I think we are going to make a good team, me, you, your daddy, Robyn, Ezra and her husband, Kyle. I kind of think that Neuroblastoma, doesn’t really stand a chance. I am sorry that any of us have to know this life. I wish it wasn’t this way. Robyn says to tell you, “Hey,” though. Thank both you and Ezra, for helping us find each other. Please be sure to get into some trouble together. I’ll bet you are the best of friends.

I’m ending this novel here tonight, Ro baby. Much to say still but my eyes are red, blurry and sleepy. I miss you. I love you. I hope you are safe. I am always so sorry. Sweet dreams, baby boy. And of course it is now pouring down rain with a side of extra angry, thunder and lightening. Thank you. I hate being apart from you, just as much as you do.

xoxo

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The it’s a given promise

Ro baby. Has it really been almost a week since I’ve written to you? How is that possible? I guess that explains all the anxiety that I have had. Well that, along with the 10 other things that are causing it with the number one reason being your death. I have no freaking clue what I’ve been doing. I’ll try to remember, but the events mentioned may be out-of-order. Pretty sure you won’t mind though.

I’ve been busy. So freaking busy. Between taking care of your brothers and running your foundation, I am left at the end of the day with my head spinning. I feel like I have so many balls juggling in the air. I’m trying to prioritize them. Your brothers come first of course, but it doesn’t take much to keep them happy. They have a good life and they know it. I’ve been giving them anything and everything that I have left which is all I can do. I get out of bed every single day. I tend to what they need. I love them. It’s simple really. They thrive off of love and security. They have that even with the death of you. It’s wrong but it’s so right. It’s the way it has to be and it’s what they deserve. They deserve the happiness that they feel. It’s all I want for them. I wish I could say it helps with my pain, but it does not. I think I’m realizing, nothing will ever help with this pain, Ronan. It will always just be this way. I will forever feel like I am sinking in quicksand and I will constantly feel like I am fighting against it for my survival. Nobody should have to be this fucking strong. Nobody.

I’ve been writing a lot, but writing to others. Trying to get shit done, yo! I’ve been helping my friend, Tanya, redo your foundation website. It looks amazing and she has worked so hard on it. You know how picky I am so we are in the process of going over everything with a fine tooth comb. Tanya has taken my vision and ideas and made them a reality. Everything about your new website is so beautiful. She knows how important it is to me to keep the “Ro,” in all of this. She’s let me come to her with these ideas and she’s made them happen. She has put so many hours into this project and she has done it all out of the kindness of her heart. I am so thankful for her. Just another one of those beautiful things to come out of all of this sadness. Beautiful people exist more than ever. I know you are putting them everywhere in my life to help me survive this. It’s your way of taking care of me. Thanks, babydoll.

I’ve been crying a lot I think. Crying at the most random times. I’ve been sleeping at night still without the help of Ambien. Sleeping and dreaming of everyone, but you. It’s not fair. I miss your face so much. I always think of you at night, before I go to sleep. You would think this would help me dream about you. It does not. I wake up sad, searching for you in my dreams since seeing you in real life, is not a reality. Seeing you in my dreams is what I beg for now. I can’t believe it is so difficult due to the fact that you are all I seem to think about.

I’ve been running a lot and not eating again. My appetite is back to nothing. I pick at all of my food. It all tastes blah and if I do eat anything, it comes back up. Your daddy took me for a nice dinner the other night. We rode our bikes to the restaurant. On our way home the little voices inside of my head, took over. They whispered things in my ear like,”What in the fuck are you doing, riding a bike? Your baby is dead. You are not allowed to go outside, with your husband, and ride a bike. You are a bad mom. You are betraying Ronan. You are not allowed to ride a bike which in turn, makes your feel somewhat normal. You are not normal anymore. Ronan would be so mad at you if he knew what you were doing.” I had to work really, really hard to get the voices to shut up. I wish I could tell you that I didn’t believe anything that they said. But I believed everything. I threw up when I got home. I threw up and passed out cold and slept for a solid 5 hours, woke up at the same time I do, every night. 3:27 a.m. Right around the time you passed away. I wonder what this means. I wonder if this is your way of screaming and crying for me and there is nothing I can do, to get to you. I think it is your way of trying to communicate with me, but I don’t know what it is you are trying to say. I’m so sorry. I wish I knew.

I saw Dr. JoRo yesterday. It was a pretty long session as I guess I have a lot going on. At one point I looked at her and said, “And is my fucking memory ever going to come back?! Seriously, Jo. It’s fucking with my life! I cannot even remember what I do during the day!” She told me it may never be the same again. She explained why, but now I cannot remember to tell you. It has to do with the trauma and loss of you. It’s beyond frustrating to me and leaves me feeling so vulnerable and lost. I feel like a little girl who is lost in the middle of the forest and will never find her way home again. I’ll just be lost forever I guess. I am hoping you can throw me a map every now and again. If I don’t get to live at home anymore, can’t I at least go and visit once in a while? That would be nice.

I had dinner with our Mr. Sparkly Eyes. I forced myself to eat as it had been a couple of days. I picked at the food in front of me, but managed to get some of it down my throat. He said he was glad for that. During our dinner where he actually didn’t eat, but watched me eat instead; I looked up at him with the question I’ve been sitting with for a while now.

“I need you to promise me something,” I said in my strongest I’m not going to cry while I ask you this voice.

“Alright. What is it?” he asked.

“I need you to promise me that if you get to wherever it is that you go to, after here, before I do… that you will take care of him. That you will watch over him and keep him safe. I need you to promise me that.”

“Of course I will take care of him. I’ll always take care of him for you. I’ll take care of him and look after him while we wait for you to join us. You didn’t even have to ask that. I would be honored.” he said with that look in his eyes that makes me know if that time comes, and if it is before me, or your daddy can get to you… you will finally be safe.

“Promise me again,” I said.

And he did. I know I didn’t even have to ask this question as it is a given due to how much he loves you, but I still needed to hear the answer out loud. It gives me a feeling of peace that I so desperately need and never get to feel. I even managed to keep my food down after dinner. Good job me. Thank you, Ro, for him.

I think I’m all over the place tonight, blabbing away. I have too many things to say and tell you. This is what happens when I go too long without writing to you and I don’t like it at all. All of my thoughts are all jumbled about. I need to sleep now. It’s late and your Gary is laying right next to me, looking cuddly and warm. Oh, how I wish it were you instead. I still think this is all a very sick, very cruel joke. I’m still waiting to wake up from this never-ending freaking nightmare.

I miss you. I love you. I hope you are safe. Sweet dreams babydoll. I’m so sorry we have to be apart. It shouldn’t be this way. I’ll keep fighting for you though. I promise. We can do this; together. We can do anything, Ro. I believe in us. I believe in you.

xoxo

A Birthday, Smiles, and Sparkles

Ronan. I smiled today. A couple of things made me smile and it felt o.k. I started this morning by running with Samya. I’m having a hard time, finding my love for this running thing again. I am still trying to get over that mental block that I seem to be having. I asked Samya if we could not run on the Canal this morning. She sweetly agreed to trust me and I picked out a different route for us. We ran up some hills, through some neighborhoods, and past Camelback Mountain. It was much better than the dirty, dusty, canal. After our run I came home and did the usual routine. The house was so quiet as everyone was still asleep. I hopped in the shower and went through the list of things I needed to get done today. After the shower, I was thankful for the quietness, as I had something important to do. It is Fernanda’s birthday today. I bought her the same locket necklace that Macy got for me in San Diego. I’ve had it for a while and knew what I was going to do with it. I got out the glue and spread a think layer on the inside of the locket. I took your ashes into the dining room and sat you on the table. I opened up your Urn, dipped my hand into you, kissed you and told you to please take care of Fernanda, for the rest of her life. I cried and smiled at the same time, knowing that you wouldn’t let me down. I let the locket dry, wrote her a little card and sealed it with a kiss. I felt as though you were watching me today, helping me with this decision as I know it might seem strange. But it felt right. And I have been thinking about this for a long time. She was with you, right before you passed away. I knew this would be the most beautiful, special gift to her. And it was just as special to me; to be able to give her such a thing. You know I would give her the moon and the stars above if I could. The gift of you is better than anything in this world. I couldn’t think of a more perfect way today, to let my friend know how much she means to me.

I dropped L and Q off at school with the usual goodbyes, I love you’s, see you at 3:15, please try your hardest today. They make me proud everyday. I watched them in the rear view mirror, as they walked into school. I looked back at your empty seat in the car, expecting to hear you yell goodbye to them. It kills me everyday to look back there and not see your sweet little face. I drove to Taylor’s where I told Fernanda I would meet her for breakfast. I sat and ordered a coffee and talked to the waitress about her amazing Amber colored eyes. This darling girl waits on me a lot when I’m there. Her eyes, are stunning and I always tell her so. You know what a sucker I am for pretty eyes. Fernanda soon arrived and I gave her a Happy Birthday hug. We sat and caught up before we ordered our food. I told her to close her eyes as I stood up to give her our birthday gift. I took out the purple jar of glitter that I had in my purse and started sprinkling it all over her head and told her it was from you. She was laughing, and crying, and was covered in all things Purple and Sparkly. I laughed while doing this today as I thought of you and knew how much you would have loved to be a part of something like this. I then gave her the locket of you. I cannot remember what Fernanda said, but there were a lot of tears involved and a lot of words flying out of her mouth. I get easily distracted by her beautiful Spanish accent and her words just kind of flew over my head. I know she told me that it was the most special gift she has ever received, how much it meant to her and some other things. I heard her words, but most of all, I just felt. I felt something else than pain. It may have been a feeling of happiness. Just a tiny bit. The tiny bit of happiness that I now cling to like I am holding on to for dear life. Because I am. I am holding on for dear life, that happiness will once again, be a part of me.

After I left Fernanda covered in glitter and my lipgloss all over her cheek, I ran home to take care of a few things. Lots of things. Lots of important but not really important things that fill my days. There are so many of those things now. All the things that come with the responsibility that I cannot just abandon because I just don’t care anymore. As much as I don’t care, I still have a responsibility to take care of things around here. Our house is so freaking clean and organized that I don’t even have laundry to do, Ro. Pathetic. I only wish that I were going crazy because of the millions of messes that I was cleaning up after you. You drawing on the walls, you spitting your food out across the table because you knew it drove me crazy, you climbing up the refrigerator and shoving food into your mouth, you taking a bath a pouring water all over the sides or splashing so much that I would have been drenched from head to toe. I wished for those days back, so badly.

I drove out to see Dr. Rachel today. The therapist your Daddy and I see. He couldn’t make it, so I went and saw her alone. It was good. It gave me a chance to fill her in on the life before I married your Daddy. A little bit of background. She wants to know why I’m so hard on myself. Where that stems from. She wanted to talk about the guilt that I seem to be consumed with. She wanted to talk about a lot of things but also said she didn’t want to undo any of my other individual therapy that I am doing. She respected my boundaries which I very much appreciated. I have a little bit of a guard up with her and I’m not sure why. I guess it could have to do with the fact that your Daddy and I both see her. It was glad to let her in a little bit. I would like to be able to let her in more, but I think it’s going to take some time.

Lots more to say tonight, but I’ve got an early morning run calling my name. Ro. Please help me out. I saw you on my run this morning; that little hummingbird that decided to show up, right when I wanted to stop. I didn’t stop. I hope you’ll be around tomorrow. I’ve got to get my running Mojo back if I’m going to kick this P.F. Changs Half-Marathons butt. Any extra push you can give me tomorrow would be great.

I love you to the moon and back. I miss you more than anything in the world. I am so lucky you were mine, for as long as I had you. You will change my life in ways that I’m not even aware of because I am stuck in this thick fog which you will help me out of, when I am ready. I know this. G’nite sweet boy. I hope you are safe. A million kisses to you. I’ll bet you miss my kisses so much you wouldn’t dare tell me, “IT’S NOT A KISSING DAY!!!!”

I love you, my not spicy, monkey boy.

xoxo

Crazy Cat Lady

Ronan. I’ve been quiet today. Which you know, are my most painful days. I didn’t sleep well last night. Woke up at 2:30, a.m….. watching the clock. Paced around the house. 3:30 a.m. was here before I knew it…. close to the time you passed away. I managed to go back to sleep, woke up around 5 a.m. ready to start the day, but did not get out the door for boot camp. Did some things around the house instead. I got ready for the day ahead of me, which was a total freaking blur. I don’t even know what went on. I’m like a crazy Cat Lady now. The crazy Cat Lady who lives alone, with 50 Kitty Cats in her house. Meow.

Except for the cats that surround me all day long, come in the form of notebooks, journals, books, pieces of paper, post it notes…. I take these things with me everywhere. I write, all day long. Lists, things to do, things to not forget, random words, names of songs, feelings, thoughts….. I write at stop lights, in the middle of the grocery store, while I’m waiting to pick the boys up from school…. I don’t even know what half of the shit is that I am writing. Maybe someday it will all come together, but for now, it is one big flood. I’m drowning in my words and the flood cannot be stopped. I hope it is healing, but only time will tell. Until that time comes, I am content to be the Crazy Cat Lady.

I remember thinking today, that I needed to get my passport picture retaken; as my passport has expired. I decided it was a great idea to go to Kinko’s to get it done. So random. Your Daddy called as I was in route. I told him what I was doing. I told him I was going to get my passport picture taken. He asked where I was going that I would need my passport. I wanted tell him, that I was going crazy. Instead, thoughts of Africa, Thailand, and Vietnam flashed across my mind; but I didn’t tell him that. I have been blabbing about going to Vietnam with Trish for about 6 months now. Mostly just to get a reaction out of your Daddy. I don’t have any concrete plans to go anywhere, as of now. That could all change, tomorrow. Why can’t I go to one of these places? I have decided that I hate the word, “Can’t.” I wrote this tonight to one of our lovies, who was saying that word. I called Bullshit on that word. Because it is. I think I said something along the lines of, “Life is too short. Stop saying you can’t. You can do anything you want, because you are alive. Ronan CANNOT, because he is DEAD. You are not.” It is true.

Sometimes I don’t know where my bluntness comes from, but then I remember you. You were so bold, blunt, and true to yourself. I am finding little parts of you, just live inside of me. I really do feel like your spirit went back into my body some days. I felt like that today, which is another reason my body/mind just seems to shut down and just let’s you take over. I just let you guide me as I kind of float through the days. I never know where you will take me, or what we will embark upon together. But I am ALWAYS up for the journey. It’s just you and me, baby. Just like we used to say, back in the day. Back in the day; that feels like so long ago. I feel like you have been gone, for 4 years, not almost 4 short months. What the hell is that all about? Is it because of how much I miss you? How much I long for you every second of the day? It has to be. I feel like I’ve been trapped in this world without you forever, when the truth is, you left this earth such a short time ago.

I am suddenly so tired now. The girls(Stacy,Trish, Fernanda) came over tonight because Daddy is working late. Stacy brought a bottle of Melatonin. I told her I’d try anything to get off of this Ristoral. I asked her really, how many I could take. 10?? 20?? The bottle says 1. We decided I could take 2. I doubt anyone has ever died a Melatonin overdose. I’ll have to Google that one. I think I’m o.k. with taking 2, except for it’s made me totally sleepy.  Yummy. I miss sleepiness.

I’m giving in tonight. I don’t think I can write about the rest of my day. Except to tell you that I missed you with every inch of my body. From my lips to my toes. Oh. And tonight, when I hugged Fernanda goodbye, I kissed the inside of her neck. For one second, I felt like I was kissing you, as that was always my favorite place to kiss you. I always kissed you there and told you I was getting some of your sugar. I got all teary eyed as wasn’t planning on kissing the nape of her neck…. but I did, and it reminded me so much of you. I love you baby boy. I love you to the moon and back, forever and ever. I hope you are safe. G’night my love. Sweet dreams.

xoxo

 

Dear overly concerned blog reader

I read your long comment today. I thought about it a lot. I just want to clear up a couple of things. First of all, a lot of the things I write, I write during the middle of the night, when I cannot sleep and my feelings come flooding out and rightfully so. I write without much thought, but with feeling instead. I understand how this may be misconstrued and sometimes I may be overly dramatic, but my feelings are always honest and true. The whole “no fear,” thing that has gotten a lot of people pretty concerned, is nothing to be worried about. I promise you all, I will not be jumping off the Coronado Bridge anytime soon. Am I less scared of things in life now that I have just lost my son? Absolutely. It would be one thing if I was shooting up heroin in the streets of a back alley, playing chicken with a train or even skydiving…. but come on peeps… I don’t even drink wine. I’m channeling my fear into doing things like surfing, which I’ve wanted to try my entire life, but was always too scared to. My running at night… what a stupid thing to be scared of before all of this. I’m always aware of my surroundings and it just happens to be at night when I am my most restless and taking my energy out on the pavement is my way of keeping myself in check. The living without fear thing anymore is coming more from a place of not being afraid to speak up, trying new things, and living a life that is worth living by putting fear aside and living with passion; as you never know when your time will be up. It is not about hurting myself, but more about pushing myself to be the best version of myself that I can be. To do that, a big part comes of letting go of fear. I am sorry if my posts sometimes get a little too dark, but darkness is a part of my life right now. I hope it won’t be forever, but it is here and as long as it is, I’m going to deal with it and not sweep it under the rug. I am hurt and I am sad. But I also have a conscious and a little chip programmed in the back of my head that tells me that I cannot get too crazy, because I have a family to live for. You know when you can all become officially concerned?? When I stop writing. When I stop speaking the truth. When I stop running and being active. When I stop being a mom. When I start doing every drug known to mankind and when I lock myself in my room and don’t come out for days. I just watched my son die and I did none of the things above. I’m pretty sure that I’ve hit the all time low that I’m going to hit and none of those things happened. So, overly concerned reader. You can relax. I am not going to let anything happen to Liam and Quinn’s mommy. This mommy was a mommy first to those to boys and I plan on staying that way.

I understand where you are coming from, but I can’t say I agree with much of it. There was a lot of judgement in your comment and you know I am not a huge fan of that. The fact of the matter is, you are just a reader. You don’t know me, my life, my family, and what goes on in our lives every second of the day. You are making judgements from an outsider looking in, by a blog that I am putting out there and that’s not fair. But it’s to be expected. It is my choice to write this blog, and I know judgements are everywhere and I’m o.k. with that. I am secure enough within myself to handle the daggers thrown my way. Are the things you said something that I would ever say to a stranger whom just lost their son? No way. Have you lost a child?? I am thinking not. You said you have lost loved one’s before, but I’m sensing not a child. That is like comparing apples to oranges and it has no relevance to a bereaved mother. Something in particular you said, was really out of line. You are putting words into my mouth and that is not o.k. with me. This was your lovely line: “you make it sound very clear that Ronan was your favorite child, and Liam and Quinn are being forced to live in his shadow. i dread the day they read your blog for themselves, because as much as you do love them – and it is clear you love them dearly – you state flat out that Ronan was your soulmate, your best friend, your partner in crime, your *everything*.”

So, lady….Wow. I’m not sure where to even start with this one. All I know is that I had no idea that I wasn’t allowed in my life to have all 3 of my children be my favorites, all three of them be my soul mates, all three of them, my everything. Because they are. If this had be Liam or Quinn, I would be feeling the same things I am feeling with the loss of Ronan. I love all three of my boys equally. Do I have different bonds with them? Of course. Was my bond with Ronan deeper? Yes, as of now, it is. But I think that is just a part of life, and bonds change due to time and circumstance. If you had just spent the last 8 months, fighting for your baby’s life, 24 hours a day, there is no doubt in my mind that the bond would be deeper and stronger than anything that has ever existed. To say that Ronan was my favorite is absolutely true. But so are Liam and Quinn. I love them just as much as I love Ronan and that will never change. I owe my life to Liam and Quinn because they have saved it. They are saving me every second of the day by reminding me of why I have to get out of the bed every morning, why I have to engage and interact with people when I really don’t want to. Those two little boys and my husband are the only things healing me right now. You really shouldn’t be afraid of the day that they read this blog; because they know in their hearts the truth. They will never doubt my love for them and if anything, I hope that this teaches them about the importance of living a life that is true and real. If you knew my twins, which you don’t, you would understand that they will not be scarred for life from this. You would understand that the things that they are learning from going through this are to always be proud of who they are, and they are both so different from Ronan. We embrace and encourage them to be who they are and always have which is why they are such amazing little guys. They will never live in Ronan’s shadow because to us, Ronan will never be a shadow. He will forever be a light that burns like the sun, he will forever be the most beautiful star in the sky. He will forever be the reason that Liam and Quinn hold their heads up high, love life, help others, and embrace all the beauty that they get to experience in a day, while learning never take things for granted. He will be the one helping as we push them to try harder and to become the best human beings that they are capable of. I, as there mother, will accept whatever this may be, whatever mistakes they make, by guiding them the as best I can and letting them learn by just loving them unconditionally.

I don’t re read what I write, but I don’t remember ever writing anything about telling the twins that they cannot express their fear. Am I missing something? If anything, I am pushing them to talk about their fear and whatever else they are feeling during the day. We spend a lot of the day talking about how they are feeling, what they are feeling, and I am teaching them that everything they are feeling, is normal and natural due to what we have just gone through. They cry when they are sad, laugh when they are happy, and are for the most part, are just trying to be little boys who are smothered with all the love in the world. Yesterday, when they were complaining about being cold in the ocean, not because they were scared, I made them suck it up and continue on. And I am so glad I did because you should have seen the waves they stared to ride and what a good time they ended up having. For just losing their brother, they are as happy as they can possibly be. They smile, laugh, fight, cry…. they do all the normal things that 8 years olds should be doing and Woody and I deal with it all by keeping our minds open and rules in place. We are taking this time at the beach to completely engulf ourself with each other. I feel like this is the best medicine. Not to shove therapy down their throats. What would you do? Keep them in Arizona all summer, throw them in a ton of therapy, all while they get to be reminded every second of the day that Ronan just died? No thanks, lady. I met with someone from New Hope in Phoenix who deals with grieving families for a living. She is very well-respected, educated, and this is what she does everyday and she has been doing it for a very long time. She loved the idea of us getting away together as a family, to take this time to heal, and to come back after the summer and start something together; as a family. She thought that was the best idea for us and I couldn’t agree more. This is our choice, not yours. This is working for us and as much as I may sound like I am not healing, I am. I have said before that I am broken into a million little pieces. But each day I can feel a piece being put back together and I believe a lot of it has to do with the fact that we are here, together.

As far as me calling you names for stating your opinions, that’s not going to happen. I don’t know you, so that would be totally unfair. I’ll just tell you to stick it where the sun don’t shine instead. Don’t even get me started on the not telling Liam and Quinn that Ronan is watching over them. What the hell is scary about that? If anything, while they are going through life, making mistakes and causing trouble.. if they choose to do so…. they will think of Ronan and know he would be laughing with them and right there by their sides. I am not going to turn this into a “OHHHH, you’d better not do anything wrong because Ronan “The Watcher,” will be there and he see’s everything you do.” Um, no. That is just creepy. I don’t think I’ve ever told them that Ro is up in heaven, looking down on them. It’s just been more of a Ronan is always with us, even though he’s not kind of a thing. He will forever be a part of our family and we intend to live with him in our hearts for the rest of our lives. They know he will be watching over them though. Guiding them, keeping them from harm, because now, he is their guardian angel.

So, overly concerned stranger. I probably should have just ignored your comment but I just wanted to set the record straight. We are doing the best we can and the choices we are making, are ours. All I’m asking is for a little respect and I have no doubt that mistakes will be made; but such is life. This is a learning process for all of us, but we are a very strong family. We are very strong individuals. We are going to be o.k. and we are going to heal, together. As much as I write things that are hard to read, it is my truth and I will not be denied of it. As much as I say I’m not going to survive this; I know I will because I refuse to let cancer have the final say.

The last little “proof,” that I am going to be o.k…. An email from my bestie today. She knows me better than anyone and she know what her role is right now. To love me and support me the way she always has and will always do. I love you, TT.

Just wanted to send you a note this morning to tell you how much I love you. I miss you. and how much I miss Ronan. Marisa and I got to have a little dinner together last night and we talked about him for a long time. I feel like I haven’t gotten to talk about him with people as much, they are scared to talk about it. But not me and Ris, it felt good and made us happy to remember. We talked about him as a baby, how he was a little devil, how he was the most beautiful baby we’ve ever seen and mostly how we still feel him around all the time. Marisa says she sees him in so many things that are beautiful, everyday. I told her about the hummingbird and how I don’t normally believe that but I couldn’t help it this time. I’m sending you a big hug and letting you know my heart is with you every second of the day. I’m thinking about you and Woody and the boys. I am with you in the no fear living…nothing will ever be the same. You are doing an amazing job, getting out of bed and being a strong mom for the boys. No one will ever question where Ronan got his fighting spirit. Continue to fight for each day , for him and the boys. I love you and miss you more than you know.

To everyone else who is concerned or worried. Thank you. Thank you for being worried and for good reason. But that you for doing it in such a way that you make me feel loved and not judged. Thank you for saying the right words, even when you say nothing at all and for respecting my space. I love you all so much. G’nite to you all. Sweet dreams. G’nite Ro baby. I missed you today. I missed you every second of today like I will do everyday for the rest of this long life without you. I hope you are safe.

xoxo

The knot

The knot in the pit of my stomach is back and stronger than ever. So bad, that I am convinced I have an ulcer. I spent most of the day trying to get things done, while begin doubled up in pain. I also had to hang up the phone with my mom because I couldn’t even finish our phone conversation due to having to throw up. You see, it’s not enough that my child has cancer. At least before now, he was acting like it was not affecting him at all. It is now. I watch him as he favors the left side of his body more than his right, as he winces as I pick him up and tells me not to hurt him, as he keeps his little right arm stiff by his side because it hurts to use it. It’s not an effect from the chemo…. it is pain related to the Neuroblastoma eating away at his body. The MIBG scan showed a lot of activity in his right shoulder still. I’m convinced this is why he is now in a lot of pain. He won’t tell me though. I’ve asked him 50 times today and he refuses to tell me he is hurting. That is how stubborn and strong he is. This is why he will beat this fucking disease. No matter how hard it’s going to be; he is not going to give into the pain.

Try watching your 3-year-old suffer this way while feeling helpless as FUCK. Try to go on while acting as normal as possible, like every second of your day is not filled with excruciating pain. I cannot even go into the details of tonight but I will just tell you as I was sitting on the bathroom floor with my husband I just wanted to crumble up and die. He is hurting as badly as I am, even though he is trying so hard to be strong. I’m tired of being strong and I’m tired of watching him try to be strong. Nobody is strong enough for this shit. Don’t get me wrong, we can both put on a good show but at the root of all of this is pain beyond belief. I don’t even know how I made it through today. I was a zombie and ended up at my Tricia Boo’s house pretty much broken beyond repair. I sat with my friend and she watched and listened as I tried to put my feelings into words and she tried to fix the things that I told her were wrong. Nobody can fix this. The truth of it is, the damage is beyond repair at this point. Unless somebody were to magically heal Ronan overnight, I will live with this pain for the rest of my life. I don’t know how much more I can take. Somebody throw me a freaking bone already and give us some good news. I cannot stand to watch Ronan hurt while knowing I can’t fix it. I am sick to my stomach thinking about all the active cancer cells in his body just eating away at him and causing him pain. How can something so evil be going on in his sweet little body? I will never understand this. It is so cruel horrific. This isn’t a freaking ear infection or a broken arm. Oh, what I wouldn’t give for that.

We got home late last night. I feel like I’ve been run over by a truck. Ronan is happy, in spite of his pain. Nothing makes him happier than being at home. We have to go back to New York sooner than expected. We have to be back by March 17th. I need more time. Time with my twins, time at home, time to wrap things up before we go away for god knows how long. We have to get Ronan back to New York asap to start the high dose chemo as well as the NK Cell trial.

I’ve got to get in the right mind frame for New York. I know once I get there, I will take it by storm. But it is going to be hard to leave here. Mostly leaving my twins behind. My heart is literally ripped into shreds. I know they are in the best hands in the world, but that does not make this any easier. But we have no choice. We have to get Ronan better and New York is are only chance. I cannot believe New York Miss Macy is not there anymore. I am beyond sad about that. Tricia told me I had to find a clone of her that lives there. I’ll be accepting applications via email. Yeah right. Impossible. There is only ONE New York Miss Macy in this entire world. My little ray of sunshine is gone and I wonder how I will survive.

Time for bed my peeps. Tomorrow will be better. Tomorrow Ronan will wake up and not be in pain. Please. Please. Please. I can deal with him having cancer as long as I don’t have to watch him act like he does. I can’t take the physical signs…. it is more than I can stand.

Sweet dreams, my lovelies.

xoxo

We’re not married…. we’re still dating;)

I wish I could tell you tonight that we have our answer. But I can’t. Woody and I both left the house on the same page this morning, thinking we knew which approach we were going to take. That all changed after meeting with Dr. Adams, the head of Stem Cell Transplant at PCH. I should have known the answer was not going to be so easy. Woody, Fernanda, and a I sat across from Dr. Adams and Woody did all of the talking. Fernanda sat and wrote notes and held my hand; I sat, listened, absorbed, and cried. At one point I looked up and told everyone I was just trying to do my best not to throw up everywhere. Dr. Adams looked at me and said she didn’t blame me, she was devistated that she had to be having this conversation with us. But, she said she still feels like Ronan can be cured…it’s just going to take a little more work than we would have liked. She said we have a ton of options available but unfortunately, nobody knows the right answer. The decision we are going to have to make is going to have to be based on all the data we collect and a gut feeling. Those were her words exactly. I told her I’d be gut feeling, and Woody could be the data:) Sounds like a perfect match to me. What Dr. Adams would like to see is us do 2 more rounds of a different type of  chemo here, than rescan Ronan and make a decision after that. She does not want us to jump head first into anything. Woody and I both agreed that this sounded like a good idea to us as long as it won’t close any doors as far as other options go. We are waiting to hear back from Dr. Kusher at Sloan to see if he is o.k. with this. We don’t see how this would hurt Ronan at all, if anything everyone seems to think we can get rid of some more of his disease this way.

There are not many people in the world that I would trust with the life of my baby, but Dr. Adams is one of them. I don’t have a super personal relationship with her for obvious reasons, but I don’t need one to know that she is a very special woman. She is brilliant beyond belief, compassionate, open minded, and has dedicated her entire life to this. She truly cares about each and everyone of her patients. She has this amazing aura around her and I feel it whenever I’m in her presence. After we left her office, Fernanda and I went out into the main waiting room to take care of some business. Fernanda looked at me and said, “I still have goosebumps after being in that room with that woman.” Fernanda felt it too. This woman is a gift to us and I want to keep her involved in Ronan’s care for as long as possible.  I fully trust her and respect her opinion so much. She wants to give Ronan the best shot possible is willing to do whatever she can. She was very hopeful because Ronan has responded so well and as I said before, she just thinks he needs a little something extra. Staying here and starting chemo would give us more time to figure out our exact plan. I hate just to jump right into anything if we can take baby steps instead to really make sure what we are doing is right. Fernanda had Dr. Eshun’s assistant get all of Ronan’s scans out to about 6 different doctors. We will take all of the opinions we can get right now. This is not the end of the road my friends, not even close. This is the beginning of a new path we are going to take to get Ronan well. I am embracing it with open arms and know it will be the right decision, when the decision is made. I trust in the higher power who is in charge of this…..whomever that may be as I believe there are many forces behind getting Ronan well.

Once again I am in awe of my husband. I sat today and watched him fire out questions to Dr. Adams that I think she was even surprised to hear him ask. He knew the names of all of the studies, the side effects, what things would open doors and what would shut doors. It is pretty amazing when you can watch someone like Dr. Adams be so impressed with a father and his wealth of knowledge. I wish I could have been of more help, but I cannot seem to detach myself from the emotional side of all of this. I don’t know what I would do without Woody. I said to Tricia yesterday, “Could you imagine if I were married to a moron and going through all of this?” There is no way I could get though it. I am so thankful I am married to such a brilliant man. I love you, Woo ❤

We still know Ronan is going to beat this but as I said before, he is going to do it his way. We will get this figured out but it is going to take a little bit of time. Nothing is set in stone and I loved it today when Fernanda said in her beautiful accent, “Honey, I love that you’re not married to one idea, your still dating!” I’ll never forget how her words made me feel today. I’ll never forget her sitting in the clinic with me and seeing her tears over something I had shown her that I carry with me everywhere I go…. her Christmas card picture with all of her 5 beautiful children on it. I feel like it brings me luck and it will help to guide me. It’s the little things that mean so much to me now. Whether it be the Claude necklace I always carry with me, my four leaf clover necklace that I never take off, Pam’s bracelet that she gave me that I also never take off, or Fernanda’s Christmas card. All of those things bring me peace and although they seem little and insignificant, they all mean the world to me.

Today was a long day to say the least. I have taken my sleepy medicine so I can actually sleep tonight. If I miss a dose, sleep does not happen. I’m o.k. with this. It won’t be forever, and I know how important it is for me to get some real sleep. My dreams are still intense and sometimes they are good, and sometimes they are bad. Working on tricking my mind into making my dreams as peaceful as possible.

Goodnight my sleepy friends. Goodnight Moon. Goodnight my sweet baby Ro, Liam, Quinn and Woo. Goodnight my Fernanda… I will meet you in my dreams for cocktails, on a beach, far away from all of this. I love you.

The dawn is breaking
A light shining through
You’re barely waking
And I’m tangled up in you
Yeah

I’m open, you’re closed
Where I follow, you’ll go
I worry I won’t see your face
Light up again

Even the best fall down sometimes
Even the wrong words seem to rhyme
Out of the doubt that fills my mind
I somehow find
You and I collide

I’m quiet you know
You make a frist impression
I’ve found I’m scared to know I’m always on your mind

Even the best fall down sometimes
Even the stars refuse to shine
Out of the back you fall in time
I somehow find
You and I collide

Even the best fall down sometimes
Even the wrong words seem to ryhme
Out of the doubt that fills your mind
You finally find
You and I collide

You finally find
You and I collide
You finally find
You and I collide


Because I’m still in love with you

Clarity. It’s what I’ve found tonight. It came in many different forms. A long talk with Mr. Sparkly eyes, an email from my Mrs. Darling(P.S., SB… that’s your new name) , an honest talk with my husband, and the music that blares on my headphones from a mixed C.D. that my New York Miss Macy made me. Clarity tonight is mine and I’m not letting it go. It’s as if my eyes have been blurred with a film of fog for months now, and the fog has finally been lifted. I have fought so many things, trying so hard to push away all the good and beautiful things I have in my life because I feel as if I don’t deserve them. Because I feel if Ronan is in so much pain, that I deserve to feel nothing but pain as well. I know that the pain that I feel most of the time is not going anywhere anytime soon… but I do deserve to have beautiful moments in my life such as tonight. I deserve these things because I am a good, true person who says what she feels and feels what she says. I am ready to feel again, something besides sadness and numbness. I am ready to feel these things because although sometimes I get caught up in the scariness and ugliness of our situation; I know what the outcome is going to be. Ronan is going to be fine. He is going to make it thought this and I have to remember to hold on to my grace and dignity. ( Thank you, CC for saving my life the other night;) Grace and dignity because after all of this is said and done; I don’t want to have any regrets. I want to look back at this journey and know that I would not have changed a thing about the way I handled all of this. Is my honesty a fault? I don’t think so, although others may say differently. This is me, this is my life, and you all get to watch the way it plays out in the way I handle things. I am not afraid to put all of this out there as I have nothing to hide. My truth is empowering to me and everyday I am learning something new about myself and the world around me.

My husband, has fought for months to get me back because he has watched the way I’ve pushed everything and everyone away. He hasn’t ever given up on me and tonight I was finally able to tell him everything I have been feeling and thinking. He knew all of it already and told me the story of how he never wanted to get married. He never thought he would marry because he didn’t think anyone was special enough to share his life with. That was until he met me. I was the one who changed his mind, I was and am the only one for him. He asked me tonight if I was sure if I still wanted to be with him. I told him I had never been more sure of anything in my life. I have been numb for months now, but ever since New York I have slowly been making my way back to Woody. I love that man with every bone in my body and I know I was meant to drift away from him so I could come back stronger than ever. So we could come back stronger together. I know this because I knew on our first date when I was just 21 years old, that I was going to marry Woody. I may have drifted, but I didn’t go far, and a lot has to do with the fact that he refused to give up on me. Not only has Woody been fighting for the life of our child, but he has been fighting for me as well. Until you go though something as devastating and hard as this, you have no idea how easy it is to just give up on everything. I can’t do this anymore. I can’t do this without my husband and I can’t do this by myself. I need him more than ever. He needs me just as much and I have to go back to being a wife to him. Yes, Ronan is my number one focus…. but the neglect that my husband has felt is not o.k. He deserves so much better. Being with Woody feels so good to me, but it also hurts so much. Looking into his eyes is like looking into a reflection of my own eyes which are filled with so much pain and sadness. But at least I have him to share this with and someone who knows what I am feeling and understands. He is the only one in my life who truly gets it and I cannot push him away any longer. It just makes everything so much more difficult. He is my best friend, he is the one who is going to fight this battle with me. We can do this together; we have no choice because I am tired of trying to be the strong one and do this on my own. Woody wants me to let him in again; and I am ready to let him in. I want my husband back; I have missed him so much.

I don’t often speak of the things that go on with Woody and I but tonight I am getting personal. Everybody should know what a toll this takes on a marriage. I am just thankful that our foundation and marriage was so strong before all of this which in turn will help us get though this. We are going to look back a year from now and know that we just survived Hell, and that we did it together. How many people can say that?? Not many. We have 3 gorgeous sons that need their parents and two parents who are crazy about each other. Yes, Woody… I will grow old with you and it will be the happiest day of my life. Thank you for fighting for me and for us. I am here and cancer can Fuck off because it is not going to destroy my marriage. We are way too strong for that.

I have met some of the most amazing people through out all of this. Tonight, I owe everything to Mr. Sparkly Eyes.. for never judging, always being honest, and for loving me and my family. Also, to Mrs. Darling, I too have the most insane intuition which is one of the reasons I feel such a strong connection to you…. having you tell me tonight about what you are feeling meant the world to me, because I feel the exact same way. I do not think you are a kook in any way. You are such a blessing to me. New York Miss Macy… for being my ears tonight and making me great music to help escape the dark hospital nights. Great music makes everything all better. And to my Wooddawg. For being the most amazing husband alive and for knowing that I am worth fighting for and for bringing me back to you. I’ve missed you so much.

Ronan’s ANC was at 80 today…. his little bone marrow is trying so hard to come back. We will find out tomorrow if they have come up even more. Hoping, but it does not look like we will be getting out of here anytime soon. Thank you to Sarah and Stacy for helping me today so I could get out of the hospital for most of the day and actually pick my twins up from school. They were so happy to see me:) You girls have no idea how much your help means to me. Thank you so much. Love you both.

Woody often tells me songs remind him of me. This says everything perfectly tonight. I love you, Wooddawg. I will love you forever too.

Coldplay : Green eyes

Honey you are a rock

Upon which I stand
And I come here to talk
I hope you understand

That green eyes, yeah the spotlight, shines upon you
And how could, anybody, deny you

I came here with a load
And it feels so much lighter, now I’ve met you
And honey you should know, that I could never go on without you

Green eyes

Honey you are the sea
Upon which I float
And I came here to talk
I think you should know

That green eyes, you’re the one that I wanted to find
And anyone who, tried to deny you must be out of their mind

Cause I came here with a load
And it feels so much lighter, since I met you
Honey you should know, that I could never go on without you

Green eyes
Green eyes

Ohohohohooooo
Ohohohohooooo

Ohohohohooooo
Ohohohohooooo

Honey you are a rock
Upon which I stand

P.S. After 12 years of being with Woody, he still to this day, ALWAYS, opens the door for me.

G’nite beautiful souls out there. Sweetest dreams. I hope you all have someone in your life that makes you feel just as special as Woody does me. Love and health are the two most important things in life. <3<3 If you have them both, you are the luckiest people alive.