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

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