Pain is my Peace

Ro baby. Hi my spicy boy. It’s time for my love letter to you tonight. I’ve missed a couple of days of writing. I always hate when I don’t get to write to you. I’m learning that this writing thing is like a beautiful, tragic, love story. One that I don’t know if I’ll ever be able to stop writing because I never want it to end. It’s my way of keeping you somewhat alive, I guess. It helps me, even though it may seem like nothing is helping. I think today is Monday….. I think. Crap. I’m wrong. It’s Tuesday. The days are still blurry and the things that go on in my days are all jumbled together. I remember yesterday…. somewhat. I didn’t wake up for boot camp. Sorry Tammy. My sleeping is still out of whack. I stopped taking my Ambien and started trying Ristoral. We shall see. The first night I took it, I still tossed and turned and had very vivid nightmares. So I went to basically not dreaming at all for the past few months to having such excruciating nightmares that I woke up 5 or 6 times during the night drenched in my sweat. I wandered around the house. Looked outside at the moon for a while. Sat in your room. I fell back asleep around 4 a.m. There was no way I could get my booty to boot camp. I dropped your brothers off at school after sleeping until 7, then I went hiking at 9 a.m. It was bloody hot. I was determined to sweat all of the demons out of my body from the night before. Sweat them out I did. It must have been about 104 by the time I got to the top. It felt good. I did the same thing today. Same time, same place, with nobody else in sight. I love how empty the mountain is. Once I get to the top, I sit there for about a half an hour and cook in the sun. I talk to you out loud a lot. I always cry. I tell you, hi. I tell you I miss you. I ask you where you are. I tell you I’m sorry. That I need your help to get me through this. I tell you I don’t know what to do without you and I always tell you I hope you are safe. It’s become therapeutic to me. As I was running down the mountain today…. full speed with Katy Perry blasting, it dawned on me. This exercising is the ONLY thing that gives me some sort of relief from all of this pain. It is during this time that I have to focus on not breaking my neck as I plow down the hill as fast as I can. I focus on my body and pushing myself so much that the physical pain hurts. I don’t stop no matter how tired or out of breath I get. I want to stop sometimes, but then I think of you. I like the physical pain as it gives my mind a break. It is my church, my meditation, and it is slowly becoming my peace.

Oh, Ro. You made me smile tonight. Just as I am writing to you, the thunder starts, the lighting, the buckets of rain. You know how I love the rain. I’ll never forget that one day with you. We had just moved into our beautiful house. It was your nap time and it was pouring rain. We made a bed on the floor in my room and sat and watched out the french doors in my bedroom as the rain flooded everything. We sat and watched and listened. We rolled around and laughed and I don’t think you ended up taking a nap. You little rule breaker, you. It was pure bliss. I remember that moment, and how happy I was. I felt like the luckiest mama in the world to be there with you, watching the rain. It was one of the sweetest, most simple moments of my life. I have Quinn here with me now. We made a bed on the floor in the same spot the two of us did. We are watching the rain, together. We are missing you, together.

Last night, we had Curriculum night at your brothers’ school. Holy anxiety attack. I about lost it. It was way too stuffy in the cafeteria, way too many people, and way too long to stand still. At one point I whispered to your daddy that I had to leave. He just grabbed me tight and told me it was o.k. That I could do this. I stuck it out. Melissa was there, close by. She knew I was about to flip out. She said she almost grabbed me and ripped me out of the cafeteria. I so wished she would have. But I survived. Don’t ask me how, but I did. We had to go to your brothers classrooms after the cafeteria. I went to Quinn’s, your Daddy went to Liam’s. I did o.k. there. I was strong and fought back the tears as a picture of you popped up on my phone, randomly. My mind started racing about how I would never be taking you to school again, how I would never get to meet your teachers, your new friends, etc….. I quickly wiped the tears away and tried to get back to focusing on the task I was there to do. I left the classroom quickly when the talking was over. I didn’t stay to sign up for things with the other mom’s. I couldn’t mentally do it. I went to find your Daddy but he was still in Liam’s classroom. Just as I was getting ready to sit down outside, Melissa came and found me. My sweet saving grace. She didn’t want me to sit alone, so she sat and waited with me for until your Daddy came out. Thank god. I had the chance to say hello to some moms that I really like though. That was nice. It is always nice to get a hug from some friendly faces. It’s funny though all of this, you really see who are genuinely, good-hearted people. I feel like I have a gift for this now. I had the chance to give somebody a big hug that I have wanted to do for a long time. One of my busy, little bees. It felt so nice to hug her and tell her thank you. I want to do that with everyone who helped and I am going to set something up, as soon as I get myself a little more organized and my head on straight. I am hoping that day will come sooner rather than later.

Today, I hiked again. Bloody hot but worth it. I don’t mind the heat the way I used to. As long as it involves an escape for me, I’m down with it. Bring it on, Mo Fo. I am getting my butt up for boot camp tomorrow though. I have my alarm set. I have to otherwise I know what happens if I don’t. I sit and obsess about it all day long. Add it to my list of things I’m fixated on now. Boot camp or Bust. Who’s going to start joining me???? Hello my friends…. I’ll take all the motivation I can get to get there. If I had you all, counting on me, I would be less likely to skip days. www.phxbootcamp.com. Get your butts there with me. Stop making excuses. I promise, it will change you life:)

So, Ro baby. I’m nervous to tell you this…. but I actually had an o.k. day. Just o.k. but it was a better day than I’ve had in a long time. I had lunch with one of my busy bees. It was lovely. We talked about The Brightest Star in the Sky event next year. I got to know her a bit and loved every second of it. Pure heart, smart, caring, and no hidden agendas and passionate about making a difference in this world. She had me at hello 🙂 I’m so thankful to have had so many people step up to the plate, to teach me that they care more about shopping, vacations, and wine drinking. Not that there is anything wrong with that, but adding a little something more to your life in such a meaningful way is good for everyone. It’s good for the soul. And a good soul can make all the difference in the world. After our lunch, your daddy picked me up so we could go to our therapist together. I was honestly dreading it. I feel so disconnected to everything now. Having to reconnect with your daddy, in front of a stranger, gave me a lot of anxiety. But once we got there, within 10 minutes, I knew this was going to be a good thing and something we desperately need. It was hard and we didn’t even get into the hard stuff yet. It was mostly an introduction and then she wanted a background on us and what we had just been through. There were a lot of tears, a lot of not being able to speak because having to re tell the story of you is so unbelievably painful. But we did it as best we could. And we did it together. I am proud of us. I liked this lady too. She knows stuff and I liked her honestly. We will go back together, I’m sure for a long time, as this is not something we can work through overnight. This is also something we cannot do without outside help. We both know this. Afterwords, we spent some time together and it ALMOST felt good to me. ALMOST. My pain is not capable of letting me feel good about anything now, but it is the closest I’ve come in a long time to feeling this way around your daddy. He is the most amazing man on the planet. I know this. As hard as all of this is, I think we will be o.k. I know there are no guarantees in life, but what we have is too amazing to throw away. He is my best friend, despite my brattiness that I often display to him. I don’t mean to, which is why I have to figure out how to deal with all of this pain, instead of taking it out on him. He is my easiest target and does not deserve any of it. You don’t get a better man/father than the Wooddawg.

Alright my little man. I’m tired. I’m going to try this Ristoral tonight We shall see. I love you to the moon and back, my blue eyed boy. I miss you so much and hope you are safe. Sweet dreams, my dear.

xoxo

                                                   I LOVE US….. FOREVER TOGETHER.

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

Just you and me

Ronan. Just another day without you. I wish I could tell you that I am o.k. But, I’m not. I’m just sad. I’m swimming in a sea of sadness and am barely staying afloat. This morning, I took your brothers to surf camp. I sat and watched them for the 3 hours and pushed them as they both complained about the ocean being too cold, etc….. I was the mean mommy that told them to suck it up. My tolerance for their complaining today was at an all time low. At one point, Quinn came in and didn’t want to go back into the ocean. He wanted to stop surfing for the day. I brought up you and how hard you fought for every second of your life. I talked to him about life and how important it is to not give up and to keep fighting. I told him how you would give anything to be living still and if you were having a hard time at something, that you would have never have given up. But life is not fair and now you don’t get to run around, never taking no for an answer, all while pushing every limit, every boundary that came your way. You were just born different from most people, Ronan. Your daddy and I say it all the time. You had a fire and such strength in your soul. That’s  why we were so convinced that you would beat your stupid fucking cancer. I’ve never met a boy stronger than you and I still can’t believe that everything ended so quickly.

After my “get your ass back into the water,” pep talk….. but in a much nicer way, Quinn finished up his class. I don’t know if I’m pushing too hard, but that’s just the way it goes. Your brothers need to learn a little something about fighting to become the best people they can be. To appreciate everything that they are able to do. To never take a second of life for granted. I have no tolerance for whining and complaining anymore. I know what it’s like to watch a little boy go through treatments for cancer and how you never once complained about anything. Except for missing your brothers and just wanting to be home. Complaining about things in our life now just won’t exist anymore, unless it has to do with missing you. That’s the only thing any of us should every complain about. Anything else can be fixed, problem solved, or worked through.

After the boys’ surf lesson, we hit up the hot tub and than came up for lunch. Liam crashed out for a nap, Quinn rested as well and I took my surfboard and headed out for a couple of hours. It was cold, but I welcomed the angry ocean with open arms today. It felt good to be out there and I got tossed around a bit. Coronado is a great place to learn how to surf and the quiet time out in the ocean, when I paddled past the waves to think about you, was nice. After I surfed, I came back up to the condo and hung out with your daddy and brothers. Later in the evening, we went out to our usual spot so your daddy could cook up our dinner. There were a bunch of dolphins out in the water this evening. We spotted about 5 or 6. They were so beautiful and I of  course thought of you. I was than overcome with anger and thought to myself that it was bullshit that a sign from you, had to come in the form of a dolphin. I don’t want any signs…. I just want you. Back with us, the way things should be. I tried to be happy about seeing those dolphins tonight, but it only made me sad and miss you more. You did leave me a lot of signs today, which I am thankful for. I don’t mean to sound ungrateful, Ro. I love all your little signs, but it doesn’t make me miss you any less. Sometimes it hurts more.

After dinner, we came back up to the condo and although it was late…. 9:30, I headed out for my run. (sorry Mr. Sparky Eyes) I promised him I wouldn’t run late at night anymore, due to an encounter I had with some creepy man a few nights ago; but I had to go tonight. It’s the restlessness in me that never goes away. I ran 7 miles…. all the way over to the Coronado Bridge and back. It felt good, it hurt, and I of course thought about you a lot. Sometimes, when I am thinking about you, it hurts so bad that I cannot even cry. I was thinking about being at The Ryan House with you and I felt like I was going to stop breathing as I still can’t come to the realization that you are gone. I think I have Post-traumatic stress disorder. For real.

Post-traumatic stress disorder

Post-traumatic stress disorder is a type of anxiety disorder. It can occur after you’ve seen or experienced a traumatic event that involved the threat of injury or death.

Causes, incidence, and risk factors

Post-traumatic stress disorder (PTSD) may occur soon after a major trauma, or it can be delayed for more than 6 months after the event. When it occurs soon after the trauma, it usually gets better after 3 months. However, some people have a longer-term form of PTSD, which can last for many years.

PTSD can occur at any age and can follow a natural disaster such as a flood or fire, or events such as war, a prison stay, assault, domestic abuse, or rape. The terrorist attacks of September 11, 2001, in the United States may have caused PTSD in some people who were involved, in people who saw the disaster, and in people who lost relatives and friends. These kinds of events can produce stress in anyone, but not everyone develops PTSD.

The cause of PTSD is unknown, but psychological, genetic, physical, and social factors are involved. PTSD changes the body’s response to stress. It affects the stress hormones and chemicals that carry information between the nerves (neurotransmitters). Having been exposed to trauma in the past may increase the risk of PTSD.

Having good social support helps to protect against PTSD. In studies of Vietnam veterans, those with strong support systems were less likely to get PTSD than those without social support.

People with PTSD re-experience the event again and again in at least one of several ways. They may have frightening dreams and memories of the event, feel as though they are going through the experience again (flashbacks), or become upset during anniversaries of the event.

Symptoms

People with PTSD re-experience the event again and again in at least one of several ways. They may have frightening dreams and memories of the event, feel as though they are going through the experience again (flashbacks), or become upset during anniversaries of the event.

Symptoms of PTSD fall into three main categories:

1. Repeated “reliving” of the event, which disturbs day-to-day activity

  • Flashback episodes, where the event seems to be happening again and again
  • Recurrent distressing memories of the event
  • Repeated dreams of the event
  • Physical reactions to situations that remind you of the traumatic event

2. Avoidance

  • Emotional “numbing,” or feeling as though you don’t care about anything
  • Feelings of detachment
  • Inability to remember important aspects of the trauma
  • Lack of interest in normal activities
  • Less expression of moods
  • Staying away from places, people, or objects that remind you of the event
  • Sense of having no future

3. Arousal

  • Difficulty concentrating
  • Exaggerated response to things that startle you
  • Excess awareness (hypervigilance)
  • Irritability or outbursts of anger
  • Sleeping difficulties

You also might feel a sense of guilt about the event (including “survivor guilt”), and the following symptoms, which are typical ofanxiety, stress, and tension:

  • Agitation, or excitability
  • Dizziness
  • Fainting
  • Feeling your heart beat in your chest (palpitations)
  • Fever
  • Headache
  • PalenessYup. That pretty much sums me up. Except for the paleness, but that is only due to the sunny Cali weather:)

I thought about the lecture I was going to get from Mr. Sparkly Eyes about running so late at night and thought about how I would tell him that I was sorry; but fear is a word that doesn’t exist in my vocabulary anymore. I have already lived through the thing I was most scared of in my life. So now what? What else do I have to fear? Nothing. Of course, I worry about your brothers and Daddy, but when it comes to me… I just don’t give a fuck. I’m not going to live my life being scared of anything anymore because I know whatever else is thrown my way, will be nothing compared to losing you. So , I will run my runs when I want, say the things I feel, swim in the ocean at night, and not be scared. It’s actually very freeing and liberating. To live a life of not being scared of things is how all people should live, otherwise what’s the point? Before all of this, I don’t know if I would have ever taken up surfing, because I was scared of sharks. And forget about running the dark. I used to make up things in my head to be scared of. Well, I’m done with that. At 33 years old, after losing you, I’m done with fear. I’m going to live my life the way you would have lived yours. Head on, embracing every adventure and pushing the limits for the most beautiful outcomes. I will live my life this way for you, because I know as an adult, this is the way you would have grown up to be. Life would have been scared of you.

I came home to your daddy and brothers watching a movie and soon Quinn was ready for bed. We came into our room and as soon as we turned on the T.V. guess what was on, Ro. “Zombieland.” One of our very favorite movies that we used to watch all the time. That’s where you got the saying, “Just you and me,” from. Another one of your little signs. That was one of our favorite things to do in the hospital was watch that movie on your iPad. Quinn watched it for the first time tonight and laughed a lot. It’s a little mature for him, but he has had so much of his innocence taken away that I let him watch it anyway. We cuddled up and watched it together. I held him extra tight for you.

We say goodnight to you every night. Do you hear us?? I hope you do. I’m going to say goodnight now baby. We have an early camp tomorrow again, hoping those brothers will pick up a little more passion and zest for the opportunities that they are given. I just want them to be thankful for being on this earth everyday, with 2 parents who are so broken, but are somehow managing to make this summer as good as it can possibly be. It’s a lot of work, but as a family, we have to do this. For all of us. I know it is what you would want.

I love you little man. I love you to the moon and back. As I was running tonight, I stopped and blew a kiss up to the moon and said, “I love you, Ronan.” I hope you heard me. Life is so precious and I know it doesn’t’ seem like it now, but I am not going to let it swallow me whole. I promise I will start living it again when I am ready. But ready is not now, and I don’t know when it will ever be. I need more time to pass between your death. I still cry all the time, but mostly over being with you that final night and saying goodbye to you. I still tell myself it just can’t be true. You were true and all I wanted was you. Forever. What am I supposed to do without you my little bug?? As of now, I don’t want to do anything except survive and not totally fuck up your brothers with the crazy shit that goes though my head. All I can do is be present for them and do the little things for them that I know mean so much. I will deal with them first, and myself later. I can wait. The damage done to them cannot be undone, which is why when we get back to AZ, therapy will become a big part of our lives. I have to be proactive about this and it is something we are going to have to do as a family, together.

I also forgot to tell you a funny story from last night. I took Quinn to dinner, on a date. We had finished up and we were walking out of the restaurant and there was a family of 5 sitting on the bench and standing up, smoking. I was holding on to Quinn’s had and I looked at them, straight in the eyes, and said, “Smoking causes cancer,” and kept walking. I thought Quinn was going to fall over. It’s like I have no censor anymore and he wanted to know if we were going to get into trouble for saying that. I said for what, “For speaking the truth? Ronan got cancer because he didn’t have a choice.” The fact that people in this day and age, take it upon themselves to smoke, knowing what the risks are, pisses me off. I’m sensitive to this, especially now. I wanted to say, “You should get cancer, not my 4-year-old child who didn’t do a thing wrong in this world.” You make the choice to suck on those freaking cancer sticks, then suffer the consequences. My child had to suffer for not a god damn reason at all except for bad luck. If anyone deserved to live, it was you baby. I will never stop thinking that. This whole things turned out so unbelievably wrong. For everyone involved. Everyone misses you Ronan. Even though you are gone, you are still changing lives. I promise you, a cure for this will be found before I die. I know I made you a lot of promises, but I promise to keep this one. I owe it to you and all the other little babies out there. Give me some time. Some time to mourn you, but when I feel ready….watch out cancer world. You’ve fucked with the wrong mommy and baby team. You are going to be sorry, but it will never be sorry enough for having to lose you over Ro. I will be sorry about that everyday for the rest of my life. Your fire now burns in my soul, you live with me, in my body. I know you may go away now and again, but when you want to come home, I know this is where your soul rests. I feel you all the time.

This is all for tonight my little monkey man. I love you to the moon and back a million times over. Just you and me, baby:) Sweet dreams. Go and visit some of your favorite people. Nighty Night baby boy.

xoxo

“Take away a man’s son. You’ve truly given him nothing left to lose.” Quote from Zombieland

I get by with a little help from my friends

There is no better way to start a Sunday morning than meeting up with my girlfriends at Taylor’s for breakfast. Tricia, Bethany, Fernanda, and Stacy all came prepared with everything we needed to talk about as far as getting things in the works for transplant. These women, I swear could rule the world. Smart, compassionate, funny, beautiful, and savvy are just a few things that come to mind when describing them. Fernanda came armed with a lot of printouts about questions we need to have answered about the isolation period and we put together a pretty good game plan. It was a little overwhelming but I know not to worry too much because these girls have it all under control. There is no way that they will not have everything and more covered. We started lists of everything from who will do laundry to the schedule for Liam and Quinn, to who will sneak me in coffee when I need it. There is nothing these girls will miss and I could not have more peace of mind with whom I am leaving things in charge of. Fernanda has read over 60 blogs of other Neuroblastoma moms and knows everything we need to do and ask.

As we were leaving Taylor’s I was getting into Tricia’s car and she looked over at me and called Fernanda a real life Superwoman. She hit the nail on the head with that one. Fernanda is a even better than Superwoman… she is my version of a Spanish Superwoman with sass, spice, brains, compassion, and just the right amount of  a fiery attitude to help me kick ass through this. Then there is Stacy. The most loyal person I have ever met who loves me like I am family. Who knows just how to calm me down by just giving me a look. If there is ever a time that I feel overwhelmed or panicked, all I have to do is look in Stacy’s eyes and I know everything is going to be alright. She is the type of person who will bend over backwards for you, without ever asking a thing in return. She gives with her entire heart, no questions asked, and fills me with the peace and calmness that I so need in my life right now. And Bethany. You look up the definition of Grace and Beauty in the dictionary, and you will find Bethany’s picture. She is somebody that I have known almost my entire life, just not well at all until now. She is guarded but wears her heart on her sleeve. I am honored that she has slowly let me into her life as it takes a lot to earn Bethany’s trust. She is the most amazing mommy, wife, friend and someone who I would trust with my life and the life of my children 110%. Last but not least, there is my Tricia Boo. My best friend for 6 years now and we have the kind of friendship that dreams are made of. It’s been a six year love story and now she has basically given up everything to help me through this. She is the Godmom to Ronan and my saving grace. There is no way I would be able to get through this without her. Sitting at breakfast this morning I felt so fortunate so be surrounded by these women. One of the biggest gifts I have received on this journey is finding out what people are really made of. The people that are in our lives, right now, at this moment, are pure gold. They are my hidden treasures whose hearts keep me filled with courage and strength. I am beyond blessed.

I think I just wrote a love letter to my sweet girlfriends above… I could seriously write a book on each and every one of them. You know how else I know I am beyond blessed?? Because I just took the time to write about those 4 girls above and I have a handful more amazing girlfriends who I could go on and on about as well. You all know who you are and I love you so much. I will never be able to thank you enough for all you are doing for me, for Ro, for our family. I will simply tell you everyday how much I love you and how thankful I am that people like you exist in the world and I treasure you all so much. Thank you for being the truest friends alive in the purest way possible.

After breakfast, Trish came over and we sat down with Woody to go over everything. We started an online calendar to get the ball rolling on what exactly needs to happen and to figure out which days/nights I will be in the hospital and which days/nights I will be at home. Seeing this on a calendar defiantly makes me feel better. Having something to look at helps to calm my nerves. I feel like we are starting to put a very good plan into place. The thing with cancer is everyday is different and you never know what to expect, but at least this gives me a little something to hold on to. I thrive in structure and with a good plan in place I feel like I will be able to fully focus on Ronan if I know who is doing what on this day and at this time.

Today, the boys’ played with their cousin Luke for most of the day. We also had Luke’s sister Lily over to play as well. She was such a little trooper, keeping up with a house full of 4 crazy boys. I took her up the street for some girly time and we got mani and pedicures. Lily is 8 and is just as sweet as her brother. I never get little girl time, so I was in heaven. She is darling and I loved spending time with her today. We both got glitter nail polish on our toes and Lily got pink on her nails with a little flower design. I would steal those kids every weekend if I could:) It is adorable to see this new relationship flourish between cousins.

After Luke and Lily went home, I could tell Liam wasn’t feeling well today. He took a big nap which he never does and woke up with a sight fever. I sat and held him for a bit but we had to call Mimi and Papa to pick him up so he could go and stay at their house for the night. We can’t take any chances around Ronan if Liam does have something. I hate that I can’t take care of my little guy who isn’t feeling well. I mean, that’s supposed to be my job… I’m his mom. We don’t have a choice though, we cannot have Ronan getting sick with anything before transplant. Off he went and Woody, Ro, Quinn and I walked down to Jay’s house to watch the Superbowl. We had a great time and Jay was the master of the BBQ making the best steaks ever. We hung out, watched football, ate, and played catch outside. Ronan got tired around half-time so I brought him home. Quinn and Ro are fast asleep now and Woody is having some boy time with Jay and Mark. He needs that so much. I am so happy that Woody’s best friend now lives right around the corner from us. It has been nothing but great for all of us.

Alright, xanex is kicking in. I must get a good night sleep tonight…. I have so much going on this week and if I am not sleeping, lord knows what I will forget to do or what I will mess up. I’ve got to try to start sleeping more at night…. otherwise my brain turns into mush and I cannot focus or remember a thing. Hope you all had a great weekend. It was one of the best weekends we have had in a very long time. Goodnight to all of you out there… sweetest dreams possible.

xo

Look at the stars,
Look how they shine for you,
And everything you do,
Yeah, they were all yellow.

I came along,
I wrote a song for you,
And all the things you do,
And it was called “Yellow.”

So then I took my turn,
Oh what a thing to’ve done,
And it was all yellow.

Your skin
Oh yeah, your skin and bones,
Turn into something beautiful,
And you know
You know I love you so,
You know I love you so.

I swam across,
I jumped across for you,
Oh what a thing to do.
Cuz you were all yellow,

I drew a line,
I drew a line for you,
Oh what a thing to do,
And it was all yellow.

Your skin,
Oh yeah your skin and bones,
Turn into something beautiful,
And you know,
For you I’d bleed myself dry,
For you I’d bleed myself dry.

It’s true, look how they shine for you,
Look how they shine for you,
Look how they shine for…
Look how they shine for you,
Look how they shine for you,
Look how they shine…

Look at the stars,
Look how they shine for you,
And all the things that you do.

What a day!

What a day! So glad it is O.V.E.R! Our usual Thursday morning started out by heading over to the clinic, with our Mimi Kay in tow. Ronan seemed like he was in a good mood, until we pulled up and I think that he remembered that it was Thursday, which means Broviac dressing changing day. Holy tantrum! I had to pry him out of the car and he proceeded to kick, scream, arch his back, and cry. He is so strong that I can barely contain him anymore. I was trying to hold him to carry him into the clinic and it took a good 10 minutes outside to even pick him up. He ripped my favorite good luck necklace off, my gold four leaf clover that Woody got me for my birthday last year. Ripped it right off my neck like he was the Incredible Hulk or something. I finally got him picked up and into the clinic but he was still screaming and trying to run away. I took him out into the common area, where the coffee lady is and held him in my lap at the table. He was still kicking and hitting me. I finally broke down and started crying and this is the only thing that ever gets his attention and makes him stop. I cried and did my usual whispering in his ear and he just watched me and soon snuggled up to my neck and settled down. Finally. It was a hard morning. Thank god I had Mimi there to help me carry my stuff and help with his dressing change. His blood levels and ANC counts are still good so he did not need a blood transfusion today which is always a plus. We were able to get out of there fairly quickly. I thought Ronan was getting used to all of this but it is days like today, that I know he is not. I never know what or who I am going to get with him. It is the worst pain in the world to see your baby suffer and hurt. It is beyond emotionally draining and physically exhausting. After we were finished there, Mimi, Papa, and Kathy took Ronan home for me and I went off to see my therapist.I needed it…. my nerves were shot after that visit. We had a good chat and I have started working on some breathing techniques to help calm myself down during the day when I am feeling anxiety. We also talked about things I can do at night to help my mind wander to sleep. I’ll try anything at this point… well, except sleeping medication. Just not going to go there.

After my appointment I met my sweet friends, Jen, Trish, Bethany, and Niki for a nice girls lunch. We had a little pow wow about some things that are in the works for Ronan’s Foundation and Pediatric Cancer in general. I’m telling you, these are the kind of girls you want on your side. Very genuine, smart, honest girls. I felt so lucky to be sitting in the middle of all of them<3 I am very excited about the things we have in store. We are going to turn this into something very beautiful and positive. I will never give up on my vision or hope for all of this. When Ronan is well, it is something I will devote my life to. Right now, I am just going to have to take baby steps to get to where I want this to go. I’m o.k. with that. Baby steps are steps in the right direction.

After lunch I ran a couple of errands and went to pick up Liam and Quinn from school. Such a treat for me. There is nothing I love more than seeing their faces light up when they see that I am there to pick them up from school. It has always been one of  my favorite things, but now it means so much more to me because I am often not able to do it. They were very happy and excited to tell me all about their day. I love that they are doing so well in school and seem to enjoy it so much. One less thing I have to worry about.

Mimi, Papa, and Kathy stayed all day and for part of the evening tonight so Wood and I could go grab dinner. We went to Chelsea’s for a quick bite. It was nice to be out alone with him. We talked a lot about New York and our plan and have the dates pretty much finalized. Woody will take me out there and when he is not there, Mimi Kay will stay with me. Karen, Tricia, and Sarah have all offered to come out during part of the time too and I just may take them up on that. I’ve got a couple of people out there that I know so hoping to connect with them as well. The more support we have, the better. It’s going to be quite a journey.. I am going to have to gather all of my strength to get him though this next chapter.

That’s all for tonight. Very tired, hoping for some peaceful sleep without nightmares. Goodnight, friends. <3

A long week ahead

Our weekend was a great one. Ronan is still refusing to act or look sick which makes this whole thing so much easier on us. I can tell his beautiful eyebrows are starting to go, but his full eyelashes are still hanging on. He looks so beautiful. On Friday we had family game night and just played at home. Ronan was of course thrilled to be spend the night with this big brothers. On Saturday Liam and Quinn had their basketball game. We were brave and let Ronan go. He was in heaven. His BFF Winston came to watch as well. It was their first mini reunion. They were both shy at first and wouldn’t even look at each other. Ronan stayed right on my lap. By the second half of the game, Ronan went to sit by his big brothers on the court and Winston soon followed. They sat by each other, talked, played, and laughed. I had to fight back the tears. It was hard to see but also beautiful to watch. Ronan took off his hat during the game and I could see other parents staring at him… also hard for me to see. I am fully aware of how sad our situation is but being out in public with him, seeing the look in other people’s eyes makes it so much more sad and real. I am so happy we took him out though, I think Woody is starting to realize that it is o.k. as long as we are making sure he washes his hands a lot and we don’t have him around people who are sick. We won’t be going to the grocery store or anything like that with him, but I think it is important for his well-being to get to do some of the same things he used to be able to do.

Saturday night we had Kay, Charlie, and Uncle Ron over to watch the ASU game. The Devils won, so it was a good night here. Liam and Quinn went home with Mimi and Papa because they had to get up early on Sunday to leave for the airport. They left for Colorado for the week for their Fall Break. Ronan was very upset about that, he was crying really hard as they got into the car. We finally got him settled down, but he is still talking about them and saying he wants them to come home. It’s better that they are gone and off doing something fun. Ronan and I have a very long week ahead of us. Last night Auntie Karen and Olivia came over to watch Ronan so Woody and I could go out for a bit. We were both tired but agreed we should take advantage of sneaking out for a bit. We didn’t do much… went for a drive and then stopped at Target. When we came home, Ronan was asleep so we hung out for a while and listened to Wood’s 45 record collection together. It was a very sweet date night. Simple but sweet.

Today, Ronan and I will head over to PCH around 1:00 to get checked in. We will be there for the entire week for Round 3 of his magic medicine. I am trying to have a positive attitude about it as far as staying the entire week in the hospital goes. It sucks that we can’t be at home… I know how much better Ronan does here. I will just have to keep his spirits up by bringing lots of things to read and we will have to go for a lot of walks. I don’t want his little legs to get weak again by sitting in a hospital bed all week.

Woody will be flying out to NYC on Thursday to meet with the doctors at Sloan Kettering. I am excited for him to get out there, talk to the doctors, and then I can be sure that the path we are choosing for Ronan, is the right path to take. New York is my absolute favorite city and I’m trying not to be sad about the reason Woody is going out there. It has always been our favorite place to visit together. Someday we will go back, as a family, and celebrate Ronan being healthy and cancer free.


Yesterday was the Susan G. Koman breast cancer walk in Phoenix. SO MUCH PINK! AMAZING! Pediatric Cancer awareness was last month. Did you see the sea of Yellow anywhere? Take a minute to think about that. Pediatric Cancer is the #1 killer of children of all childhood illnesses combined!