Tears on the Inside. Sparkly on the Outside.

Ro Baby. Did you see us last night? Me. Your Daddy. Your brothers. Your cousins. Your Mimi Kay. Your Nana. Your Cousins. Your Tricia,Marisa,Danielle,Gay,Gina,Fernanda,Stacy,Sarah,Lindsey,Niki,Uncle Jay, Liz and Dr. JoRo. All of our new friends, too. I know you felt the love. How could you have not. The venue last night, was filled with the most beautiful people, in the world. The only one missing, was you. What were you doing, last night? We’re you watching us dancing along with the music? Were you running around eating all the candy? Were you throwing things off the balcony?? I’ll bet that’s what you would have been doing. If you would have been there tonight, you would have rocked the runway like no other. Nobody could wear a Fedora, quite like you.

I wonder so many things now, Ronan. Everything that is happening seems so surreal. I never truly experienced that word, until losing you. Now I feel this way with everything that happens in my life. Whether it be from being surrounded by so much love last night at the Fashion Show, to running on the canal late tonight and I swear the whole time the path sparkled like glitter. I’m laying in your bed right now, unable to sleep. Even this seems surreal. Do you want to talk about last night? I think we should as it was a night to be remembered, for as much as I don’t want to because I just don’t want it to be true. I want it to not be real and I want to just wake up from the nightmare of having you gone. I just pinched myself and fucking felt it. So, we will talk about last night.

I don’t know why it didn’t hit me, until last night as I was smack in the middle of watching kids walk down the runway that OMG, this is so totally wrong. For as beautiful as it was, it was just as equally as fucked up. There I was, sitting with your Daddy, Dr. JoRo and your Nana, while pictures of you played on the slide show above me and I sat back and watched as all these adorable kids, came dancing down the runway. I kept looking for you. Surely, you had to be next, right?? I waited and waited and waited. You didn’t come. I saw everyone, but you. I kept looking at Dr. JoRo. I didn’t even have to say a word to her. Her eyes said it all. I know exactly what she was thinking because I was thinking it too. Thoughts floated in and out of my head. I think I left my body for most of the night. I would have given my soul, right then and there, to not have had to be there because you got cancer and died. I kept my composure most of the night and managed to smile, naturally. My smile came because of all of the beautiful people in the room. I fully believe that 99% of them there, were for the RIGHT reasons. The other 1%, can FUCK OFF. You know who you are. You see Ro…. I may be new to all of this, but I have a vision for what I want your Foundation to turn into. Something of substance. Something where people are FULLY invested for the right reasons. Just not because they want their picture in Arizona Foothills Magazine. Or because they want their child, in a fashion show. I don’t ever want this to turn into that. It’s so important to me that this message in all of this, does not get lost. It takes a certain kind of person to understand this message and to truly want to understand the real meaning behind it. These are the kinds of people, I want behind us. I’m not tolerating the other bullshit. I just won’t do it because of your fancy last name. I am not an ass kisser and do not plan on starting now.

But Ro. Let me tell you about all of the RIGHT people that I had the pleasure of meeting last night, all thanks to you. I didn’t do a lot of socializing, but when I did venture out into our new world that exists it was so sparkly and gorgeous, just like you. While I was in hiding, in the VIP area a girl came in because she thought she saw me. She was the most darling thing and was so nervous to talk to me. She kept saying things like she couldn’t believe she was meeting me, but I felt just as lucky to be meeting her. She told me I was her hero which made me laugh. She must like my use of the Fuck word. I hugged her and she kept trying not to cry, but she had everyone else in the room, crying because of the TRUE, VULNERABLE, emotion that she couldn’t hide. I took some pictures with her. I tried to make light of the heaviness in the room by telling her we could take a naughty picture too. We stood there and smiling, and posing, while we flipped off the camera. She laughed. I hugged her again and thanked her for coming. I saw a girl named Tiffani that I met at the Garage a couple of weeks ago. I remembered her and her name which was huge for me, as I have an awful memory these days. I said, “Hi, Tiffani!” She was so excited and cute. She asked if she could have her picture taken with me. I told her of course. I think we flipped off the camera as well. Whoops! I’ll bet this is the first charity event that has been held, where the middle finger was used in pretty much every picture taken. Classy, Maya. It makes me laugh because you know what?? Cancer is that fucked up that I think it should be mandatory that if you go to an event, in support of cancer, that everybody should flip off the fucking camera. Especially if it is because your child died from it. I got to meet another one of my blog readers, whom I’ve been wanting to meet FOREVER. Michelle. She has been reading forever. She is always supportive, even with my darkest posts. She has a lot of faith which I so respect. She never throws it in my face, which I LOVE. I RESPECT that. I was so happy to meet her, and to give her a big hug. I wish I would have gotten a chance to hang out with her more. I can tell she is an awesome lady.

There venue was filled last night with so many of my favorite people. Some I know well, others I do not, but they always make me smile when I run into them. Nate’s mom was there, Beth. Little Elizabeth’s mom, Heidi. Mia’s mom, Sandra. All mommies who’s babies are battling cancer right now. That meant the WORLD to me. Elizabeth was supposed to be in the fashion show, but she is stuck in the hospital due to a fever and low immune system. She did her own fashion show, from her hospital room. The pictures are PRICELESS. They melted my heart. I have no doubt, the two of you would have been such great friends. She has such a spirit and glow about her. I saw Jen, the mama of 3 boys who is battling Brain Cancer. All 3 of her sweet boys, were in the show. She is in the middle of treatment that she is doing, in California, and supporting you means so much to her that even though she just returned from Cali, she made it to the Fashion Show. Did I mention that she is battling Brain Cancer? Talk about an amazing mama. I know how excited her boys were to be in this. I met them the other day and I can tell you, never in my life have I met 3 sweeter boys. Well, excluding you and your brothers. And those Willets boys. The 9 of you, together, would have had the BEST time.

And Ro. Some sweet man bought that painting for us, that Dash did. The dad of a mommy I know. How sweet is that? It is so beautiful and it was so kind of him to do. People are amazing. That picture reminds me so much of you and will go perfectly in your untouched room. Your room that has your Star Wars figures dumped out all over the floor because I put them there, the other day, so you could play with them. I haven’t picked them up. Dr. JoRo tripped over them tonight and it made me laugh because that is exactly what would have happened if you had been here. I stepped on one with my bare foot tonight as I was coming to climb into your bed. I yelled out “FUCK!” because it hurt. Then I smiled because it made me think you were here. Then I cried because you were not. I’m laying in your bed now. It’s quiet and cool. Your stuffed animals say Hello and that they miss you. I’ll sleep with them tonight for you.

I know you saw the venue last night. It looked amazing. I have a list a mile long of people who I just want to reach out and hug to tell them Thank You. Miss Katie, first. For so many things. Do you know, how I met Miss Katie? I think I told you. I didn’t know her, before all of this. At some point, we became friends on FB, which I don’t even remember because I am now such a FB whore, that I accept every friend request that comes my way. I used to be so private. Guess that all flew out the window, once you got cancer because I decided that I had nothing to lose. I have no idea who half of my FB “Friends” are but some of the best of them, have come out of it, like Katie. I don’t get on there very often anymore, because I tend to get overwhelmed. But when I was checking it this summer, I noticed Katie from the Garage for Kids would often repost my blogs. I remember thinking how sweet that was, because her store was more of a “Kids,” clothing store and my blog is not very “Kid,” friendly. Once we returned from our summer away, I think I messaged Katie to tell her I wanted to come by her store, to tell her thank you in person. We set up a time for me to come by. As soon as I walked in, it was just kind of like, “Oh. Hello.I’ve known you my whole life.” It was actually really weird, but it wasn’t. It just felt like that’s the way it had always been. Then I started coming into her store more and more. Then the Fashion Show idea got thrown in there. Well, Ro. I can tell you something. There is NOBODY, I would have rather done this with. It is so important to me, when throwing your name out there, that it is associated with the right kind of person. Katie is without a doubt, that person and I am so thankful. I feel like we work really well together and we share a lot of the same visions. Everything about last night was so detailed and sweet. From the pearls that dripped off the Miss Piggy Spirit Hood to the wrap around candy bar. I know as this event goes on in the future, that is just going to get bigger and better. I am so excited for the future of this and what’s to come. And that’s saying a lot, because I know you know how hard it is for me to think about the future. I usually refuse to go there.

You know what else, Ro? I have this hive around me called The Busy Little Bees. I think I made this up, in one of my blog references and the name has stuck. I like it. It’s cute. It’s sweet. Maybe a little too sweet? Maybe I should rename them, The Fuckin’ Busy Little Bees;) Nah. I’ll keep it clean. And pure. Because that’s what these women’s hearts are. Full of love for you. And me. And our family. And their families. I’ve never in my life, seen anything like them. It’s amazing how they pulled this all off. It’s amazing how they all came together and totally got shit done. It’s because of these women, Katie, and all the generous donors and support of the community, that your event was such a huge success. I am humbled. I am thankful. I am honored to know such beauty in such ugliness. You are so loved.

I have a thousand more words to write, but it’s 4:30 a.m. I’ve got to try to get some sleep. We can talk about my dark run freak out Dr. JoRo left a wedding to pick my ass up tonight because I was hysterical….. later on. I love you so much. I miss you more. I hope you are safe. Sweet dreams, baby doll.

xoxo

Seriously. Thank you. To everyone who is reading this. Who came out last night. Who helped. Who smiled at me. Who hugged me. Who cries for me. Who was there, in spirit. Who donated. I don’t care if it’s a freaking quarter. It’s something. You are doing something, even if it’s just wearing his bracelet. Even if it’s just talking about him. You’re doing so much more, than you think. I love you for this. Thank you, from the bottom of our hearts. OH! And dear sweet Taylor Swift! I almost forgot! Did you wear that purple the other night on the award show, while you sang your song, just for RO??!! Everyone thinks you did!! I do too:) Thank you, baby girl. My Quinn has not stopped playing your music, since we left your concert. And last night, I honored you at Ro’s Fashion show. I had my friend, Dave write one of your lyrics down my arm. Do you know what it said?? Everyone has been asking, but I wanted to tell you first. It said…..

“And I don’t know why but with you I’d dance

In a storm in my best dress

FEARLESS”

I know why. You know why. He knows why.

Thank you. Love you.

xoxo

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Fiesta of Tears

Ronan. Hi little man. I missed you so much today. We had a lot of things going on that kept us busy at the beach. I packed the car full of your favorites; Quinny, Liam, Macy, and Nana. We ran a couple of errands and stopped at Costco on the way back home. It wasn’t very exciting, but it was nice to be out. We had to hurry back to get your brother, Liam, packed to go to Washington to see Papa Jim. It was kind of a last-minute decision, but he really wanted to go. I’m trying to look at this as a positive thing, but I am mostly just upset about it. I’m upset in the respect that if you would have been here, we would all be there together. I am upset in the respect that we have to be separated from Liam. It makes me most upset that our family is now broken, damaged, and so sad due to losing you. This is the first time in Liam and Quinn’s life that they have ever been away from each other on a vacation. It all feels weird and wrong. Thank GOD I still have Macy here as well as the Kotaliks. Quinn is getting a lot of time with the girls in and he is eating it up with a spoon. I talked to Liam and he arrived safely. He sounded so excited to be there. Papa Jim will bring him back Sunday night and the will stay a few days with us. That will be fun. I only wish you were here to play with all of us. For a split second, I thought that you would be and I imagined you playing outside with him. But then I remember. The fucking one thing I want not be true…………is.

I hate cancer. I texted that to Mr. Sparkly Eyes tonight. Blubbering about how this is the first time in 14 years that I have not been home during the summer, how it is the twins’ first time being separated during a Washington vacation. How I hated cancer and how I was having a pity party. He replied back he does too and I am allowed to have as many pity parties as I need. He was so sorry. Everybody is sorry and sad. I hate that too. I hate the sadness that people now feel for us. I don’t want people to be sad around us. I want happy back before all of this existed.

Ro. I have to cut this short tonight as my Ambien is really kicking in. Also, that I have Macy and Quinn asleep beside me and they both seem so snuggly. I am tired. I miss you so much, boo. I hope you are safe. I’ll talk to you tomorrow. Please give Esther a kiss for me. Her mommy needs her tomorrow as it has been 2 months since she passed away. Make sure she spends some time with her tomorrow, o.k. Ro. I love you to the moon and back my sweet baby. Time to go into my Ambien coma now. The numbness is the only way I can fall asleep.

xoxo

Ronan. Hi baby boy. I think I started this yesterday. Last night maybe. I can’t really remember. Everything is blurry. I’m not sure how the days have been filled, but somehow they have been. I think a majority of my time is being filled with keeping Quinn busy and happy. Macy is doing a great job of helping me while your daddy and Liam are away. She is here with me still. I am so glad; she makes everything better. Today, we woke up a little late to the blaring sun. We decided to take Quinn out to Carlsbad to go Strawberry picking. We go there every time we are in San Diego during the summer. We were on our way, almost there, but I had to stop for gas. I decided to get a car wash too so we just ran through a little drive through one. We were sitting there and I was telling Macy how you used to love to go to the cheap drive through car wash in Phoenix with me. I remember it like it was yesterday. I started to cry and so did she. Quinn just sat in the back quietly and watched us. Thank god we were distracted by a very minor “the car wash just ate the gas cap of my car emergency,” otherwise, I think we would have both sat there forever, crying. We took care of our situation and headed off to pick our Strawberries. It felt so wrong to be there without you today. I remember the last time we were there, with you. I snapped pictures of you and your brothers in the Strawberry fields together. Today, Quinn was an only child and I watched him as he wandered through the day without you and Liam. It made my heart heavy.

Quinny is stuck to me like glue. And not in a good way. Poor little guy. He cannot leave my side for 2 minutes. This has been going on pretty much since your funeral. It has gotten really bad over here though. I am doing my best to be patient with him as I know he is so scared. I am trying to talk to him about everything as much as possible, but I have mostly just been smothering him with love and attention that he seems to be craving so badly. He worries so much about everything… especially when I leave to go on my runs which is pretty much the only time that I am away from him. We have a lot of work to do when we return back home as far as getting us all into therapy. I am trying my best while we are here to work though things with him, but there is only so much I can do. Having Macy here for as long has she has been has been really helpful with everything. She is so good with me, the boys, with the Wooddawg. She is scared for us though. She told me last night about how hard it is for her to watch us all try to go on with our lives. How unfair this whole thing is and how she see’s the toll it is taking on our entire family. She is watching me struggle to breathe every second of the day. She is watching as I continue to push everyone away. She is watching as I continue to drown. I know what I look like. I know what it looks like from the outside because I often feel like I am watching myself from above my own body. I see myself, from above, all the time. I see myself under the water, trying to get to the surface for air, but I never do. I watch the bubbles reach the top, but never my body. I watch my eyes and I can tell you that I can see them crying the tears I cry, while I’m trying to get to the surface for air. It never happens. I see my eyes, and the bubbles and the dark, black ocean. I see Ronan. I think about this a lot during my runs when I am having a hard time breathing because I am running so fast. It makes me run faster. So does the thought of my “slayer,” attacking me. I daydream about that…. about the day that someone will come out and grab me on one of my runs and they will kill me, but not before I have the time to send Woody a text message saying how much I love him, Quinn and Liam, how they are all my soul mates but I have to go and be with my other soul mate now. Which is you, Ro. I daydream about the day I will be reunited with you all of the time and I go over all the different ways in which it could happen. I’m not scared of it. Even when I picture my eyes as I am drowning in a sea of black water…. my eyes are still vibrant green and they are happy; even though they are filled with tears. I’m not scared of death anymore. I watched you die right before my very eyes. I know when my time comes, it will be a beautiful thing and you will be waiting for me on the other side. I cannot wait for that day, until I see your little face again. To kiss your sweet lips and to hear your squeaky voice. I miss you so much.

After the Strawberry fields, we had nowhere special to be. We decided to drive down PCH and enjoy the scenery and sunshine. We opened the sunroof, blasted Pearl Jam, and watched the ocean come alive with surfers, people, birds, and sparkling sand. We stopped for lunch at a little Mexican food place as none of us had eaten today and Macy said she could not take being on the “Maya diet,” for one second longer. We sat and ate and started to talk about you. We talked about Dr. Kushner and have decided that the way he was with us, is just his personality. He cuts off all emotional ties when he knows the outcome is not going to be good. He has had to desensitize himself so he can do his job, the best way he knows how. Unfortunately, that means often making people feel more awful about their situation and leaving them feeling let down, helpless, and regretful. He is like a robot as I’m sure he decided a long time ago this is how he was going to be when he decided to become a Pediatric Oncologist. That still does not make it right and I will  have my sit down with him and he will look me in the eyes. I promised Ronan and myself. I will get this done. Sooner, rather than later. I want to go out there in the Fall. I’m not going to put this off.

I was telling Macy about your amazing hair color and how I was so sad she never knew you when you had hair. We started looking at pictures on my phone of you and the tears started again. At one point, I was so consumed by guilt for being in San Diego, at the beach, when there are so many sick kids with cancer right now. I felt like running right to the nearest hospital just so I could be in the presence of all of those amazing kids. I felt guilty that I wasn’t doing something for them, at that moment. A lot of the guilt came from knowing I was sitting there with Macy and Quinn, with the sunshine on our backs, the memories of you flooding in, and how many kids are trapped in hospitals and do not have the freedom that we do. I don’t like this freedom I have without you, Ronan. It gives me major anxiety and I will never be able to enjoy it again. I look at people around me, who have no clue, and they are just so happy. Happy at the beach, happy together as a family, happy because they all still live in their little bubble of a world. It makes me want to throw up. In fact, I did throw up tonight after we came home. Just driving through the town of Coronado is enough to do me in. I get so sick to my stomach that we are here and you just died almost 2 months ago. FUCK. July 9th is coming up soon. It will have been 2 months since you passed away. That is not going to be a fun day. Please watch over me on that day, Ronan. I know you do everyday, but especially on that day. I hope you were with Esther last night. I wish I would have dreamt of you two, together. My dreams are black and empty. Just like my heart.

After our fiesta of tears, we hopped back in the car and continued on our way. We ended up pulling over in Del Mar to enjoy the amazing beach. Quinn, Macy and I all held hands and ran to put our toes in the sand. It was such a gorgeous time of day and the beach was breathtaking. Quinn took off, alone, and went to find some rocks. He never does things alone and I could see the sadness on his face as he had to do all of this without you and Liam today. He soon came over and asked if I would help him. I said of course and off we went. We ended finding some really pretty rocks for his collection which he is so into right now. He was so proud of them. Macy and I could have eaten him up with a spoon today. He really is everything, kind, sweet, and full of nothing but love. As I was getting my purse out to pay for parking at the beach today, Quinn goes, “I have money in my wallet, mom. I can pay for it.” Cutest thing ever. He has saved up his money and has offered to pay for anything  and everything. I keep telling him no, to save his money, but I know how proud it would make him to buy a little something for me. I’ll let him leave the tip at a restaurant or buy me a coffee soon. What a gentleman. Some girl is going to be very lucky one of these days.

We finally got home around 7:30 and everyone seemed pretty tired. We put in “The Wedding Singer,” and watched it together. Now, Quinn is in the middle of Me and Mace. They are snuggled up together so sweetly. Macy is like the sister I never had; but I should have. I totally have that sisterly connection with her and it has always come so naturally to us. I swear I’ve know her in a past life as well. Maybe we were sisters then. There has to be something….. the way we met, and had an instant bond. The way Ronan loved her so much and we all know how picky he is about people. He took to Macy instantly too. He knew Macy in a past life too; I’m just sure of it. I feel like the new people I’ve really, truly, deeply connected to since all of this, are people that Ronan and I have both known before. I’ve got my list….. there are about 10 people on it. I will forever hold these people close to my heart as I consider them family now. It’s as if I have a whole new family, thanks to Ronan. Just another one of his little gifts he has left behind. You, my son, amaze me everyday.

Alright my little man. It’s late and Macy told me I needed to go to sleep early tonight. Early means 2 a.m. not 4 a.m. I’m going to snuggle up with them now. I wish you were here to snuggle with us. I miss you baby. I hope you are safe. Sweet dreams my favorite blue eyed boy. I love you, Ro.

xoxo

  

Little seal

 

Ronan. Your birthday. Daddy’s birthday. Liam and Quinn’s Birthday. Next up…. Father’s Day. Tomorrow. It’s hard enough having you gone, but having these “celebrations,” without you is unbearable. Tomorrow, I will somehow manage to get myself out of bed, somehow manage to go on about the day, somehow I will let your daddy know how much you love him. I will love him for you tomorrow. I can’t believe he has to be without you, so soon on fucking Father’s Day. No.No.No.No.No. This still can’t be true. I’ve managed to get through these days without you, but I do not want tomorrow to come. I wish we could all sleep right through it and wake up on Monday. Can’t we just skip over Father’s Day tomorrow?? I’m tired of these celebrations so soon after having you gone. Talk about ripping a band-aid off of an open wound. It’s all happening way too soon. I’m so sorry for your daddy. I’m so sorry that you can’t be with us tomorrow. I would give anything to change this, Ro. I know you know that.

We spent today at the pool and the beach with Laura, Kasey, Cameron, and Baby Chase. It was a gorgeous day out. I went surfing for a couple of hours. The Coronado beach was full of seaweed today. I was literally paddling my board out to get past the waves and my hands were full of seaweed after each stroke that I took. I didn’t mind though; it was so gross and unlike anything I have ever experienced before that it made me laugh. The waves were small today but it was good for me as I am still learning how to get the hang of this whole surfing thing. I stood up a lot which also made me smile. After I had been out for about an hour, I came back in to warm up. As I was laying on my towel, I heard some guys in the group of people next to me talking about how they were out boogie boarding and a little seal was out there with them. I, of course, thought of you. I wished I had seen this little seal today but just hearing them talk about it made me smile and cry all at the same time. You are my little seal. Your name always fit you so perfectly and you always reminded me of one with your playful ways. Even more so after you got cancer with your beautifully bald head and enormous seal eyes. Was that you today, watching over me without me even knowing you were so close by? I think it was. Thanks for keeping me safe. Next time, I’ll look for you.

After our beachy day, Laura and I ran some errands and your daddy and Kasey got the food ready to grill down by the pool. They cooked up a feast and we spent the evening eating and watching the kids run around and play. Liam and Quinn are so good with the little one’s. They were both so meant to be big brothers. I am so sad that they don’t have that anymore. They were always so good to you and loved you so much. My heart breaks for them almost more than it does mine. Watching them these past few days with Cameron and Chase has been beautiful and sad. They were meant to be big brothers in life. They were meant to be your big brothers. I’ll never understand this, Ro. Never. I’ll never understand why you had to be taken away from us. Such a cruel, cruel reality.

How am I going to get through tomorrow? How am I going to be strong enough to get your daddy through it? I’m about ready to start banning all holidays from now on except Halloween, which was your favorite. If I had my way from now on we’d only celebrate Halloween, and Birthdays. Everything else seems stupid and pointless. But so does everything without you. I’m sorry I’m being such a Debbie Downer tonight. My heart hurts and I don’t know what to do or how this is ever going to get better. I just miss you so very much. I’m going to go now, Ro. I’m too sad to write anymore tonight. I love you to the moon and back baby. Sweet dreams.

xoxo

Chase and Quinn. Look how happy Quinn looks. He loved being your big brother so much, Ro.

The start of many firsts without you. A.K.A. Fucking firsts. Thanks, S:)

Ronan. I’m tired tonight. I have not been sleeping well and I know it is because I am missing you so much. I don’t really know what it feels like to be depressed, but I think that’s what I’m feeling lately. I’m still going out, doing things, but my heart is so heavy that I sometimes feel like it is just gone. I don’t even feel like my heart lives inside of me anymore. It’s too heavy to carry around and I feel like when you left, you took my heart with you. I’m so sad. My tears are endless. My hurt is unbearable. I miss you every second of the day. Life is so strange without you here. We all feel it and we don’t know what to do with it.

Today, I took your little surfing brothers to camp. They both did really well but it was a cold day for them out there. I let them pack up a little early as they were excited to play with Laura and Kasey who came to see us today with Cameron and Chase. They arrived just in time to watch your brothers catch some waves. We spent the entire day and night with them. It is always so comforting to me to be with them as you know how much they mean to our family. It was a little hard today though too. Mainly because of all the time we spent with them with you. You and Cameron are so close and age and when the two of you were together, I used to dream of you growing up, being best friends, maybe dating :), but being together forever. Childhood friends for the rest of your life the way I grew up with Laura and pretty much Kasey too. I met Laura in the 8th grade. We became best friends. She met Kasey when she was 15 and they started dating. My two favorite high school sweethearts and our families blend so well together. Watching your daddy and Kasey together…. well, to me there is almost nothing better. Being with Laura, with all of you crazy kids, running about has always been one of my favorite things  about life.  To know that now that will never happen again with you, makes me so sad.

Tonight, Laura and I were sitting by the pool watching Cameron and Quinn play. Two summers ago, that was you…. “Baby Danger,” jumping off of the edge of the pool, scaring Laura to death all while I sat back and watched you and laughed. To sit tonight and watch Quinn swim quietly with Cameron, was so hard. I sat and cried and Laura just rubbed my back. I told her I just miss you and she asked if the days ever get easier. I told her no. So far, they have not. I told Mr. Sparky Eyes tonight that I don’t think time heals all wounds, if anything they just become deeper. I will be scarred for life after losing you. But I’ve got to figure out how to wear these scars with pride and dignity because that’s how you would have wanted it. I’m trying not to push myself too much as I need to let the dust settle because you left me such a short time ago. I want you back so badly, that I would trade having just one more day with you, for my life. Ronan. I miss you so much. I don’t know what else to write tonight as I am just too sad. I got a very sweet “Dear Ronan,” letter from Melissa that I am going to share with you. It is beautiful, just like she is. Thanks, M. You are so true and genuine which is why I love you so.

Dear Ronan,
I keep thinking back to Saturday, May 7th, two days before you died.  You were lying in bed, your legs were emaciated and your mamma kept rubbing them.  Ro, you were in so much pain. I thought your mamma’s hands would fall off, she never stopped rubbing your legs and little upper thighs. I laid for so long on that bed with your mamma and rubbed her back because I wanted to help her so much.  I offered to take over and rub your legs but you would only allow her to help you. She never stopped.  Your mamma went so long without eating or sleeping that last week you were alive that it was amazing she could function.  I kept buying her coconut water.  I think that was the extent of her nutrition.
I am 42,000 feet high in the sky tonight heading to Rhode Island.  
I am flying on ” A Big Jet Plane ”  Ronan, and I feel a little sad.  I am thinking about the amazing summer Dante and Alessia will experience and how you won’t live a life.  You had such a short time on earth. You were robbed of time.  As my Dante says, ” Ronan was dealt a shitty deck of cards, ” a little inappropriate for an eight year old to say but it is the truth. Your parents raced against the clock.  Time always wins Ronan, time is so unfair. Time has no respect for age, love, or hope. 
I do believe every one of us is on earth for a purpose.  I do believe your purpose is to be the beautiful poster child for awareness and funding for neuroblastoma. A horrific purpose for a family.
Do you want to talk about ignorance?  When your mamma told me you were diagnosed I had to go home and goggle it.  I placed a P where the B is located in that awful word. In August your mamma told me you had cancer, a perfect stranger at that time, and I decided I would be friends with Maya Thompson. Why not?
I brought her a coffee one day and realized immediately that I got so much more out of the visit then I ever thought possible and loved her personality and determination.  Remember how you would throw me out of your hospital room at times when I would visit?  You were so feisty!  I hated leaving your mamma but she did not mind because you were happy.
I was having horrific nightmares after you died.  It all started the day your mamma showed me your ashes while in your home one afternoon.  I told her they scared me and could not believe they were in the kitchen.  The worst nightmare was about your mamma and I in Frys Supermarket.  She was running around screaming, “where is Ronan ?” We looked and looked but we could not find you anywhere and there was a clock on the wall showing us we were out of time to find you.  I then ran all the way to the ocean and when I got to the shore I found a body floating dead in the water and it was Alessia.  I would then awake and my heart would be racing and pounding. 
The dream must have derived from your mamma’s horrific and tear jerking blog, “Where’s Ronan ?”  I read that blog too many times.  I couldn’t help it because I could not believe I watched you drink a coke on Saturday and demand those Star Wars guys be placed in good and bad categories on your bed, then visited Sunday night and then you were gone forever…………
Well, I no longer have that nightmare thank goodness.  I think it is because I finally realized where you are, right in your mammas heart and soul. 
I’m sorry the prayers did not work, I am sorry that time won and I am sorry that your parents had to go through hell to make others realize all the good in their lives.  So many people are better for knowing your sad story.
I am so lucky that Dante, Alessia, Liam and Quinn all go to school together.  We are all going to be friends forever.  We were at your house the day they left for California. I was so happy to see the boys excitement about the trip. I promised your mom she would never be “one of those moms.”   You know, the useless ones that talk a lot but never make a difference.  Mamma and I are going to keep drinking our extra hot vanilla lattes and do a whole bunch of good work.  Your mom has a team.  I have never seen one person have so many amazing friends.  I have always thought it was a blessing to have a few close friends…but not your mom…she has multiple teams of friends.  Maya Thompson reminds me of a tornado, a good one. 
I can’t wait to see what she does once she is a feeling a little bit better.
By the way, my phone still twerps like a bird.  I loved how it would make you giggle.  Your adorable giggle will remain in my heart forever.  
Thank you Ronan.  Thank you for all your life lessons and making me a better person. 
Love,
Melissa 
I’m going to end this post tonight now. I am going to try to get to sleep at a decent hour as I can feel my body shutting down due to the lack of sleep and overdoing things. Ronan. I love you to the moon and back baby. I hope you are safe. Please don’t go too far away from me. I still worry about you so much. G’nite my sweet boy.

Salt on an open wound

 

 

Ronan. Life goes on. One thing I am learning, is no matter what happens in life, it goes on. I hate this. I want everything and everyone around me to just stop. It’s apparent that this is not going to happen. I had no choice but to wake up today. It happens to me every morning, over and over again. Like groundhogs day. I woke up to the sunny sky and the ocean breeze. I told your daddy that we should go to The Hash House for breakfast. Do you remember when we went there a couple of summers ago? I think you had just turned 2. You were at that age where you would never sit still, but I somehow managed to keep you entertained as we enjoyed our breakfast. My friend, Kelly, took us with her husband and little girl, Gracie. Seems so long ago, Ro. But it wasn’t. I sat on a bench this morning, while we waited for a table. There was a mom sitting right next to me with her baby girl who was just 6 weeks old. I didn’t even know what to feel. Normally, I would have been all over this mom and sweet, new baby girl. Instead, I sat there quietly and tried to ignore her. Today, I felt a mix of jealousy, sadness, and emptiness. I thought about you when you were that little and what a gorgeous baby boy you were. I wished I could turn back time to have you all over again, as a baby, even if it still meant you ended up dying of cancer. I would do everything we just went though with you, all over again in a heartbeat. I don’t care how hard it was; at least you were still here. At least I still got to look into your big blue eyes and hear your little voice. I can never have those moments back now because some asshole named cancer has stolen them from me. I still can’t believe you are gone. I still cannot believe things like this happen in this day in age, especially to kids. Especially to you.

After the Hash House, we ran some errands. We then came back here and had a kind of lazy day. I took a nap with Quinn and your Daddy worked while Liam played on the iPad. It was a quiet day. The days I hate the most. We went over to Mimi and Papa’s condo for dinner. Liam is sleeping over there and Quinn is here with us. I can tell he is missing you so much. We watched some videos of you on my computer tonight from when you were about a year old. You made Quinn laugh like no other. He laughed so hard tonight as you  were up to your usual mischief and Quinn was your favorite target. He loved all the trouble you used to cause so much. I never thought I would complain about having boys that are so well behaved, but I am going to tonight. I miss your trouble making ways and the way you and Quinn would cause it together. Now, Quinny has nobody to cause mischief with as you know Liam is such a little rule follower and gentle soul. I cannot describe to you the absence you have left in all of our hearts Ronan. It’s like a whole new life. I life none of us ever dreamed of or wanted. A whole new, unwelcomed life where we have to struggle everyday to fill our days with something to make us smile. Today, we smiled over talking about you. Today, we cried about missing you too though. Those things seem to go hand and hand.

Tomorrow. Tomorrow, I actually have something to look forward to. Mimi and Papa are taking Liam and Quinn to Legoland which they are so excited about. Your daddy and I are going to drive to Laguna to meet up with Denise from Fore, Axel & Hudson. She is part of the amazing company who sent you all of your adorable hats and clothes. I have wanted to meet her for so long and we have been trying to coordinate meeting up. I can’t wait to give her the biggest hug for you. I need you to be with me tomorrow, baby. I cannot do this without you. As much as I am so excited to meet her and to tell her thank you in person, it is going to be hard not having you with me. I used to dream of the day that we could both meet her together, after we had gotten you all better. Your daddy is going with me so I will have him there to hold my hand. We will watch for your little signs all day tomorrow to know that you are with us. It will be the first time in a long time that your daddy and I have spent alone; just the two of us. I hope I’m not a wreck; it is hard for it to be just the two of us. Hard for me because I know your daddy is hurting just as badly as I am so it is like looking at myself, in a mirror, with my heart ripped out of my chest. The two of us together, alone, Ronan. It is just plain sad. The times that it is just the two of us, we basically just sit around, stare at each other and cry. I look in his eyes, and I see your eyes. Someday, I hope this will make me happy. But as of now, it’s like pouring salt on an open wound. Too much pain, everywhere.

I ended tonight by turning on the T.V. which I rarely to anymore. A movie, that I used to love, “Life as a House,” was on. Oye Vey. Bad idea to watch that movie. So good, but so sad. And of course it has to do with cancer. It was like a bad car accident though. I couldn’t stop watching or turn it off. I ended up bawling my eyes out. Cancer is just awful all around which is why things have to change. We are on to something though. That event for you, The Brightest Star in the Sky, that was put together in just a few weeks, raised 50k for you foundation, Ronan. 50K! I can you believe that?!?!?! I am still in shock and I am already hoping to turn this into an annual event. Think of all the awareness we are going to raise! My friend, Carolyn, said it was because of my words and your eyes that the event was such a success. I think she’s on to something. I’ve got a message to get out there and your beauty is going to help me do it. I was talking to Mr. Sparkly eyes today and you know how he is with his words. They always hit me hard. Today, he called me powerful. I laughed out loud at that, because I have never thought of myself this way. But after thinking about it, I feel like being powerful is something that I know I can be because I do have the passion and you on my side. I will use my power to make people aware of Neuroblastoma. Something most people have never even heard of. I am going to use my “power” in such a positive way and make such an impact. I have no choice. You will forever be my inspiration, my hero, my role model in life. You have changed me forever. Thank you, little man.

I’m going to snuggle up to your brother and your blanket, GiGi. Miss you so much, Ro. Sweet dreams. Come and cuddle with me tonight. I love you.

xoxo

You speak in every curling wave

 

 

 

Ronan. Today started off as good as it possibly could, without you here. We woke up and Liam, Quinn, and Layne spent the morning playing together. I put on my good mommy boots and made them all a huge breakfast. Waffles, fruit, eggs, bacon, sausage…… you name it, it was on the table. I thought of you the entire time as I was making the scrambled eggs, just as you would have liked them. You used to insist that I made the best scrambled eggs ever and would only eat them if I made them for you. I loved that so much. Soon, Layne went home to get ready for the day. Your daddy took Quinn and went off to Costco and to run some errands. I stayed here with Liam and we just kind of had a lazy day. I cleaned and did a lot of laundry. I had a few things trigger a lot of tears today and I did a lot of throwing up. Your dad came home to me, a wreck, just sitting on the bed, bawling. Quinn took one look at my face and sat down with me at told me he loved me and started rubbing my back. I forced the tears to stop and got up to help them unpack the things from Costco. Your daddy and Quinn came home with my very own surfboard for me. It almost cheered me up, but I mostly just couldn’t wait to get out into the water so I could get my ass kicked. I was on a mission. Mission accomplished.

I got your brothers all ready for the beach and we headed out to meet your cousins. They had their stuff in the sand, but they were all in the pool. We set our stuff next to theirs, Liam and Quinn headed out to the pool and I grabbed my board and paddled out into the ocean. The ocean seemed as angry today as I was. The waves were ridiculously big. I didn’t care. I paddled out as far as I could, which ended up being really far. Wave after wave threw me from my board and under the water. I continued out there, to try to get past them. I got up a few times, I asked for your help. At one point as I was paddling out, I looked up and a huge wave was getting ready to come crashing down on me. I think I said, “Oh shit,” out loud and ended up flying off my board and the fin ended up hitting the back of my arm really hard. I almost thought it was sliced open, that’s how badly it hurt. Turns out, it was not…. it turned into a big welt and bruise instead. No big deal, yo. As much as it’s hurting tonight, I am choosing to ignore it because all I can do is think about you and all the pain you felt, especially towards the end of your fight. This stupid welt on my arm has nothing on you, Ro. I surfed for a couple of hours and the current ended up pushing me really far away from my starting point. Tiffany was watching from the shore and when I finally got back over to her, she said she was a little concerned that I was going to end up in Mexico. I told her I didn’t realize how far away I had gone and that I was ALMOST a little scared for my life at one point. But not really because fear doesn’t really seem to exist anymore.

After my little surfing fiasco, I went to join your brothers and cousins at the pool. They are such little fish and didn’t stop swimming in the pool and the ocean until 9 tonight. We were down at the beach for 7 hours today. We met up with your Mimi and Papa, and Uncle Larry and Aunt Joan. Tiffany and her kids too, and we grilled up a big dinner by the pool while all the kids continued to swim. It was such a sweet summer night. Of course, the only thing missing was you. Quinn ended up cutting his little thumb on something in the hot tub so we had to doctor him up. I took him into the bathroom as he was very upset about his thumb. I changed him into his warm clothes, looked at his thumb that thanks to Tiffany and her first aid kit, we had it bandaged up pretty good. He was really upset about it and I just quietly explained to him that I was sorry he was hurt but he is going to get hurt in life; it’s just part of being a kid. I talked all about you and how after all the things that you went through, that were so painful, that you hardly ever cried. I don’t know if it is a good or a bad thing to make comparisons to you and how tough you were to Quinn. But tonight, it needed to be done and it felt right so I did it. I think more than anything, he was just tired and needed some mommy love. We packed up our stuff and Liam helped me carry everything to the condo while Quinn went on and on about his thumb. As soon as we got upstairs, I put him in my bed and 15 minutes later, he was out like a light. Worn out from his day at the beach and I know sad from missing you. Liam told me last night as he was crying that he was homesick. I asked what he exactly was homesick for. He told me his bed and you. I held him and told him we were all homesick for you, but now you lived in our hearts so you will always be with us. As much as I could tell you this seemed to bring him comfort, it didn’t. It didn’t help me either. I don’t want you in my heart; I want you back here with us, where your freaking belong.

After a long day, I ended it with talking to Stacy. What a perfect way to end my night then with a phone call from her. She had a lot to tell me about meeting with the busy little bees today in regards to the event that they put on at The Biltmore for you on Friday night. I sat, cried, and listened as she told me about meeting with the girls and how amazing they are and how much love they have in their hearts for you. I am still in awe of how quickly they put on this event and how many people came out to support it. We talked about how after the summer, I would like to sit down and pour all of my energy into making this an event something we do every year for you. For others, because as I’ve said before, we have to raise awareness. I cannot believe the army of people that we already have lined up to help us with this. I don’t even know how this happened. Actually, I do. It is all you, Ronan. You are changing lives everywhere. I cannot wait to personally meet all the people who helped with this event and give them all the biggest hug from you. The passion that you have created is astounding and once again, I am so proud to be your mama and your best friend. I miss you, Ronan. I know you are here though. Thanks for the little sign tonight that comes from my Pandora. Right now, as I’m writing this, your song came on. The song that we played for you every time you were left alone in the room for your radiation. The Killers, “Human.” You are such a special little soul. G’nite best friend. Thank you for visiting your daddy so much in his dreams lately. I know you will come to be when the time is right and I can get off of this damn Ambian. Love you to the moon and back, baby.

xoxo

 

Everything’s not lost, but really it is

Ronan. You were everywhere today. I had to stop and catch my breath a few times just so I wouldn’t throw up. I am reminded of you in everything and everywhere. In the whole avocado that Quinn had for lunch. In the Mickey Mouse beach bag that Stacy carried her kids’ beach stuff in. In the Star Wars swim trunks that Mac had on today. Even as I watched your cousin, Jake, eat some Mandarin Oranges at dinner. I had to fight back the tears over all of those things today. You loved all of them so much. It’s so strange to see these things that have such little meaning to everyone else, but they mean everything to me. I don’t know how to deal with all of those little things because every time I see things like this, I just want to curl up and die.

I am not living. I am surviving. And it sucks. I still don’t understand why you were taken away from us so quickly. I think about this all the time. It kills me that everything changed so suddenly and how rapidly your disease progressed. I swear it happened over night. Your daddy and I fought so hard for you. We talked to the best doctors, researched everything we possibly could and it still was not enough. It all happened way too quickly and I’m still trying to make sense of something, even though I know I will probably never get an answer. I deserve one though and I am angry at the way the doctors just seem to want to sweep you under the rug, like you never existed. I want to hear from them that they are sorry. I want to them to look me in the eyes and see their pain because  they couldn’t save you. I want some sort of acknowledgement that you were here and they are sorry that they couldn’t save you. I know this won’t make you come back, but I want them to hurt the way I am hurting so that maybe they will work harder to save the life of the next child who is going through something like this. I know that these doctors work hard, but not fucking hard enough because you are gone. I want someone to blame, even though I know nobody deserves to carry the burden of this. This is the cause and effect of our insanely mad world. It is the only way to explain how such a thing can happen to a child or a teenager. Complete unfairness and insanity. There is no other answer.

I ran on the beach tonight and was so not feeling it. I pushed through for you though. I sat and watched a daddy pulling his little girl on a boogie board and then I watched as the mom came and swooped her up and off they went holding hands, running down the beach. I wonder if that mommy knows how lucky she is. I would have given anything to have been that mommy today, running down the beach and holding your hand. Instead, I get to watch somebody else doing it. It was another one of those outer body experiences that I seem to have all the time now. After I watched the mommy and little girl, I laid down and the sand and looked up at the sky and just cried. I didn’t want to finish my run, but you forced me to get back up and pound out the last 2 miles. The waves chased me a lot today and at one point I couldn’t run fast enough away from them. My sneakers ended up getting soaking wet. I thought of you and pretended that the waves were your little feet trying to run after me. I have to hold on to things like this; this imaginary life I have made up in my head just to get through the days without you.

I heard from, “The Stranger,” again tonight. Except now, I know her name. I liked hearing from her and a bit of her story. It took a lot for her to write her first email to me but I am so glad she had the courage to do so. Her words helped me last night when I was really needing it. She talked about how she struggled for nights to write that email and then to actually send it. After my day yesterday, her email could not have come at a more perfect time. I know that was you, Ro. Your little way of getting to me. Thank you for that.

Quinn and Liam have their cousins, Jake and Carter over for a sleepover tonight. All is quiet except for your big brother, Quinn is in bed with me watching Sports Center. I knew he would end up in here with me and not out in the living room with all the other boys. It has been so nice having your brothers spend time with their cousins. They have formed such a bond over such a short period of time and all the laughter and just watching them all be boys has made my heart a little happy. It is helping me to see your brothers laugh and smile despite the sadness that I know weighs heavy in their hearts. I’m watching them heal a little more one day at a time and I know a big part of this is the family that surrounds us. I am so thankful for that.

I’m so sad tonight, Ro. Your daddy is not here and when I talked to him on the phone I could hear how sad he was being at home all alone. Without us and without you. I don’t know what to do or to say except for to tell him I love him. I’m having a hard time talking to him about you yet because everything is too painful. When we do sit and talk about you we both just end up crying. I don’t think the crying is ever going to stop. I don’t think there are two parents who ever loved a little boy so much. I like to think that it is because of the love that your daddy and I have for each other which is why you were given to us. We love each other so much and you were such a gift. I just don’t know why you had to be taken away. And I don’t know how we are just supposed to go on because it does not seem possible to live our life without you. I’m clinging on to anything I possibly can, but it will never be enough and I honestly don’t know how I am going to survive this. This life hurts and this life is cruel.

But I am going to continue to fight through this because I know it is what you want. It is what your brothers deserve and your daddy too. But there is not a day that goes by that I wish the world would just swallow me whole. Every inch of my body hurts and misses you. That will stay with me for the rest of my life. I’ve somehow got to find a way to learn to live this new life without you. I promise I will try as long as you keep guiding me and giving me strength.

That is all for tonight my love. I hurt too much to write anymore. I love you to the moon and back my most beautiful boy. Sweet dreams.

P.S. Every song on Pandora tonight has reminded me of you. Are you the one making this little playlist for me, my sweet boy? Your gifts are all around. Everyday with you was the best day of my life. I love you, Ro baby.

xoxo

Ro baby takes San Francisco

We are leaving this evening for San Francisco. Praying for a safe flight of course but most of all praying for a little bit of clarity. I hope by looking into Dr. Matthay’s eyes, that I will have a better feeling about everything. I am hoping she can give us some answers and guidance. I am hoping that Woody and I will walk away from this trip feeling a little more prepared for what we are up against. As of now, all we can do is gather all of the data possible and let our intuition guide us. I hope to get a feeling of what San Francisco can offer us.

Today, I met with my friend, Mr. Sparkly eyes. I put on my bravest face but he knew just by looking at me that I was a wreck. We sat for about 20 minutes and had it out. He asked me why I was second guessing myself… told me to knock it off and just to continue to do what we are doing. He is right, I have never been one to second guess my choices in life and I cannot start now. I listened as he pounded into my head once again, how strong I am, how strong Ronan is and how when the decision is made, it will be the right one. It was just the little pep talk I needed. I felt stronger after having left him and I know he is right in everything he is saying. I met Fernanda for a bite to eat at Chelsea’s but it was really just another little pow wow session that I needed to have. I am so lucky to be surround with such bright and beautiful people. I wish I could put Fernanda in my back pocket and take her with us. We sat and talked about everything from Ro’s path, which is uncertain as of now, to how we are going to get Oprah to listen to us and do a show on Childhood Cancer. Fernanda has been emailing Oprah every single day and has made it her personal mission to make Oprah listen. Could you imagine the good things that would come of this if she did?? The awareness that would be raised?? I don’t think it’s asking too much of her to change an episode of her show for something so important. I just pray that she hears all of the people asking this of her and chooses to do the right thing. She has the power to make this happen, if she would only listen. Her voice could change childhood cancer forever. Does she realize this?? I am not giving up on this Oprah thing, and if anyone can make it happen, it’s Fernanda. Thank you, F…. for lunch today and for the spirit of the person you embody. I swear to god you have wings. I have meaning to throw this quote in for a while. My friend, Melissa DiFilippo, who’s little girl is in Liam and Quinn’s first grade class sent me a message the other day on FB. It said, “When I grow up I want to be Fernanda.” It makes me laugh out loud and brings a smile to my face every time I think about it. I couldn’t agree more.

Alright world…. here we go. Off to San Fran and it’s time to take care of business. See you sooooooon New York Miss Macy!!!

xoxo