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

Ro

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

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

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

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

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

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

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

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

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

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

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

xoxox

New York Miss Macy and the Candy Store Girl

Ronan. Hi my baby. Nighttime is here. The stars are out. Everyone is asleep. Slumber party in my bed. I hate the time between now, and when I actually fall asleep. It’s too quiet, too calm, too still,  and too lonely without you. It’s the time when my heart feels the heaviest and my mind is so restless. Thoughts of you being gone fill my head and cannot be stopped. It’s as if my mind is screaming that you are gone, but my heart refuses to believe it. I cannot fully accept what is the truth, as true as it is. The magnitude of life without you is too much to take. This is a big part of why I write to you. I write until I can take no more, until I am so tired, that my mind and body finally give in and sleep comes to me. I have no idea how I am getting through this thing called life, especially with the lack of sleep that now consumes me. Somehow, I just keep on going, trying to do my best to ignore everything that is telling me to stop. I want so badly to stop being strong. I would give anything to have you back and to float through life, without knowing this pain. Who the fuck decided this was my lot in life? I want a refund.

All I can say is thank god for New York Miss Macy. I was this close to jumping off our balcony today. Ok…. not really, but she could not have come at a better time. Your brothers and I need a distraction and some laughs. She provided both of those things today. As soon as she arrived, there were hugs all around. We got her settled in and decided to walk to go and get some lunch. We took her to Burger Lounge, where and we all had lunch. Afterwords, we stopped at the candy store to get some treats. The same candy store that has toy pistols and rifles handing on the walls. All I wanted was for you to be with me so I could buy you one. I imagined you running down the street with us, shooting everyone. I stared at them for a minute and caught myself starting to get choked up. I am so glad for what happened next as it has kept me giggling all night. I watched this scene play out like a movie. Let’s call it: “New York Miss Macy and the Candy Store Girl.” Ready……scene….. ACTION!

– Maya goes to the register to pay for her candy and the grouchy teenaged girl working, gives her the total bill with a scowl on her face. Maya watches as New York Miss Macy is standing next to her and takes a couple of pieces of candy out of her bag, before paying, and starts to eat them. Maya watches as the Candy Store girls eyes glance over to New York Miss Macy and a look of annoyance comes over her face. Maya thinks to herself, “Is the Candy Store girl really getting mad because Macy is eating a few pieces of her bulk candy before she pays??” She decides it is only her imagination as isn’t it a given that you munch on a few pieces of candy before you pay when you go into a  bulk candy store?? Not 3 seconds later, the Candy Store girl looks at Macy and goes, “I’m going to actually need you to PAY for that candy, BEFORE you eat it.” Macy, whom is clueless as to what she was even doing because it is just second nature, looks up and goes, “Um…. what?? Yeah, o.k.” Maya is trying to hide her laugher. Macy pays and we scurried out of the store. As soon as we exited, we burst into laughter. Macy goes, “Wait, did I really just get reprimanded for eating a few pieces of my candy by a 15-year-old girl? What is she, the candy police???” This is so something that would only happen to Macy. It made for a lot of laughs tonight.

After our candy store incident, we continued on our walk back to our condo. As we were all 4 walking back, we were looking out at the ocean. Dolphins appeared. We stopped to watch and ended up climbing down some rocks to sit on the beach for a while. We watched the dolphins and played in the sand and water. We ended up having a sand and water fight because sometimes in life, it just makes sense to do silly things like that. It made perfect sense tonight. You would have loved every second of it. At one point, Liam and Quinn were in the distance, playing, just the two of them. It was surreal to watch and I felt as though I was having an out-of-body experience. I will never get used to it just being the two of them, without you injected in the middle. Nothing is right anymore and nothing makes sense. As we were walking back, I got a text from Danielle. It was if she had read my mind from a few minutes earlier as her wording was almost eerie. Something along the lines of how she wants you back so badly for me that it hurts. How you are the light, the finishing touch, the pistol that keeps me alive. She then ended it with, “Fuck. I hate life.” Danielle is one of those people in my life who just gets it. She gets everything. She has a lifeline to my soul and to yours. Her words brought me comfort, for as sad as they may be; they are always true and real. She takes the time to really sit and think about all of this that we are going through and when we do talk about it, I feel as if she is living inside my mind because she says everything that I am thinking. We have a very strong spiritual connection. Thanks, D. Miss you much.

Now that Macy is here, I was able to get in my run tonight. I was totally unmotivated and dreading it. I almost didn’t go. The little voice in the back of my head would not have shut up if I didn’t. I knew this so I headed out the door and ran a fast 6 miles. It actually ended up being a really good run. I’ve missed the pain and release of running these past few days. I broke my record on my NIKE iPhone app for my fastest 10k. Guess I was feeling it after all. I returned feeling better and hopped in the shower before we started movie night. The boys and I decided that we would introduce Macy to one of our favorite movies, Ro. “Zombieland.” She had never seen it and it had her laughing within seconds of turning it on. The more I watch that movie, the more I love it. Seriously, Top 10 favorite movies of all time for me. She loved it too. I knew that during all that laugher, one thing was going to get to her. That one line that will forever cut like a knife. “Take away a man’s son, and you’ve truly given him nothing left to lose.” I watched her wipe the tears from her eyes. I’ve decided that I would like to live in Zombieland because this normal life without you is for the birds. If I have to live without you, I would rather do it by being a badass and killing Zombies than living in this painful life that now exists. At least I would have a lot of things to take my anger out on, besides myself and the nobody who answers to me. The nobody that is to blame, the invisible being that took you away. Somebody should have to answer to me and to explain why. I hate that nobody can give me a reason for this because there should be a reason. If you had to be taken away, I want to know why. And I don’t want to spend the rest of my life trying to figure out why this happened to you, but I don’t know how I can ever come to peace with any of this unless I have somewhat of an answer. Gee, fuckwad. Thanks for the fucking journey that I now get to figure out in life. Thanks for taking my beautiful life and smashing it into a million pieces. I HATE YOU.

But I love you, Ro. I love you to the moon and back. I am still here, despite my pleas to you. I’ll stay here for as long as you want me to be. I know I have to help change the way of this disease for you. Everything I do in my life will be for you. Everything I have done in my life since the birth of you and your brothers, has always been done by putting you all first. I was so happy to do this. It brought me such happiness. Now, I have to go on and continue to do what I have been doing for so long, which is being a mom; without you. I will continue to do this but I will never stop feeling like I have a limb missing. As well as a big chunk of my heart. This is permanent. These scars are not going anywhere. I don’t know how people say they fade either. If anything, I think they just get worse. They are for me anyway. To each his own.

I love you baby. I love you so, so much. I miss you every second of the day. I hope you are safe.

xoxo

                             Family Forever

New York Miss Macy, Quinny, Mama Maya, and Li Li

A Sea of Sadness

 

 

Ronan. Hi baby. I’m waiting to board my flight back to San Diego. It’s late. I had to leave you tonight and somehow I made it to the gate of the plane. I had an o.k. day. I kept busy and luckily I had enough things around Phoenix to do to keep me that way. I ended my o.k. day with dinner at my favorite restaurant, Chelsea’s Kitchen, with my lovelies, Tricia, Danielle, Marisa, and Stacy. It was a good dinner and it felt good to be with my girlfriends. Tricia took me back home after dinner and she and Marisa helped me pack up my things to get back to San Diego. I didn’t have much to pack, but they helped me with little things too like making my bed and picking up little things here and there. I kissed your urn goodbye and told you I loved you. I had a hard time leaving the bedroom where you sit, all alone in the dark. I didn’t want to go. Marisa left me with a hug goodbye and an I love you. I miss her so much. As soon as I sat down in Tricia’s car so she could take me to the airport, I started to bawl. I stared at your bedroom window and all I could think about was how you were never going to play in there again. Tricia pulled out of our driveway and held my hand. I cried all the way to the airport and said things out loud to her that I don’t really say to other people, but I think in my head all the time. She asked where I thought you were. I told her I didn’t know and how hard that is for me. She told me that she thinks you are always with me. In my heart of hearts, I think that too, but it doesn’t ease the pain any less. When we got to the airport, she insisted on coming in with me instead of just dropping me off at the curb. I didn’t put up a fight.
She walked me to security where we both cried, hugged, and she told me how she would never let me go. How we will get through this. How much she misses me. I just held her tight and told her I knew. I hate so much, that you, her first godson, are gone. I will never forget the day I asked her to be your Godmom. It was such a special moment in my life.  I hate how badly she hurts. She was with your Daddy and I when you came into this world. She was the one holding my hand with your Daddy as I screamed for another epidural. She saw how perfect you were after you were born. And then she stood with me as you were diagnosed with cancer. She held my hand through everything and watched as you got sicker and sicker, but refused to believe the worst. She watched the worst come true. She watched you come into this world and she watched as you left. Along with feeling the pain of missing you, I feel the pain of everyone else around me too. How can one person be given so much to handle in life?? How am I expected to survive this when not only do I feel like dying because you are gone, but because everywhere I look, I see nothing but sadness and tears in everyone else’s eyes. I am swimming in a sea of sadness and all I want to do is drown. I don’t even want to use the word, unfair anymore because that is such a weak word. This is beyond unfair. It’s mother fucking fucked up.
 Today, as I made it though the day without crying, I sat in the waiting room of my therapists office and I was going through all of my new emails. I saw one that was from Dr. Mosse from Chop. She sent me a real, heartfelt email that said things such as she hoped it wasn’t  too disruptive or painful to hear from her. She simply wanted to reach out and say hello, to let me know that you are in her thoughts as she comes to work everyday and thinks of you as she works harder to find a cure for Neuroblastoma. For something so simple and so little, it meant the world to me.  I started crying as I read her words and sent her a quick email back to thank her for taking the time out of her very busy life to check in on us. I told her how I am struggling and a big part of this comes from the what if part of if we would have chosen her path, for your treatment. I told her that I will always second guess our decision. I told her how I was sorry because I didn’t listen to my heart after our first meeting with her. When we first met Dr. Mosse, I sent Fernanda a text that simply said, “It’s her. She’s going to be the one to save our baby.” Then we went out to New York and met with Dr. Kushner, whom I really liked. Whom I really believed too. So, I shoved my “gut,” feeling down as far as I possibility could and ignored what was in my heart. I will always wonder, what if. Your daddy and I have gone over and over this. He is sure if we would have went to CHOP, that your outcome would have been the same. The bottom line is, we will never know. We will never know and you are gone. Something has to be done about this. Someday, a cure has to be found for this disease and it has to be understood because no family should go through something as horrific as this.
Tonight, I feel weak, scared, and sad. Tonight, the feeling is back like I cannot breathe. I would like to go to sleep and never wake up just the way you did. Tonight, the pain of being on this airplane all alone, without you, is just too much. Where is my Bryson friend when I need him? There are no Bryson’s on this plane tonight. It is full of people. People who are busy. People who are happy. People who are unhappy. People who are unsatisfied. People who don’t care. People who have no idea how many children die of childhood cancer everyday. People who have no idea what it means to truly feel, to truly live, to truly be grateful for every little thing they have in their lives. At one point in my life, I used to be like these people. Unaware of how precious life TRULY is, because life just WAS. It was a given, not a gift. I never took the time to fully understand how precious life really is, how precious every moment in life, no matter how good or bad truly is because whatever it was…. I was alive and I had 3 healthy children and I never second guessed that things would be any different. Now I know. I know because you are gone and I am the closest to knowing what it feels like to being dead, while being alive. I don’t want this life without you, Ro. But I also respect that this life is not my choice and I cannot decide when it is my time to be with you again. I respect that I have to take care of your brothers, your daddy, our friends, and family. I have a lot of people who I cannot let down. I cannot let you down either.
So sorry for the pity part tonight, my love. I will push though this, pick my head back up, and stay focused on the job that you have given me to do. I refuse to fail you. I love you, Ronan. To the moon and back baby boy.
I wrote that last night, Ro. But was too tired to finish it. I had a hard day today. We spent the day moving out of the unit that we have been in for a month and into a new unit. It’s a different building, overlooking the bay, and it is pretty much the same layout of the unit that we stayed in over here when you were just a year old. This has opened a floodgate of memories for me and I have spent the majority of the day crying. As I was unpacking the car with your daddy, he noticed my tears. He picked me up off the ground and held me for a long time. I hate everything in our new life that we are doing without you. I hate that today, I unpacked the car without having to worry about you running around crazily in the parking garage, as I pictured myself having to chase after you to make sure you wouldn’t be hit by a car. Today, I had none of that worry and it is all I wanted.
Once we got settled in our new place, we went into town to eat. We ate at our favorite Burger place here, just the 4 of us. You would have loved the chocolate milkshake that I shared with Quinn. It had a ton of whipped cream on it and your brother laughed as I fed it to him. You used to LOVE your whipped cream. After we had our lunch, we ran into the grocery store to get a few things. As I was walking through the frozen food aisle, there it was. Your Fettucini. I felt like passing out on the spot. I stopped and stared at the Marie Callender’s Fettucini Alfredo that you lived off of while we were in the hospital at PCH. You always hated hospital food and I cannot count the times we would cook this in the microwave together and how happy it made me to watch you gobble it all up. It was the one thing I could always count on you eating. I loved feeding it to you because of all the calories it had in it. I’ll never be able to look at that Fettucini the same again. I’ll never be able to look at a lot of things the same again.
We came back to our unit and tried to get unpacked a little more. Mimi and Papa came over to take Liam and Quinn to see “Cars 2.” Your daddy tried to talk me into going out on a date with him, but I couldn’t muster up the energy to go anywhere. I was just feeling too sad today. I did get out for my nightly run though. I did my usual route; a fast 6 miles. Around mile five, I started to feel sick to my stomach. You know me and my notorious throwing up ways if I run too hard or too fast. Luckily I found some nice bushes out of sight from anyone and out came my one meal of the day…. lunch. I finished the last mile and now here I sit. I still feel sick to my stomach and I’m sure it’s from the combination of you being gone and pushing myself with my 8 minute mile tonight. I had a lot of anger to pound out on the pavement and it seemed as if my feet were on fire. Too bad my body decided that it was too much because it felt pretty good. I haven’t run in a few days which always makes me extra anxiety ridden, depressed, and leaves me with extra nervous energy that I don’t need. I had to get that out tonight otherwise I was going to end up doing something drastic; like eating a bag of donuts.
Alright my little man. This is all for tonight. I miss you so very much. Sweet dreams and I hope you are safe.
P.S. A very Happy Birthday to my dear Laura Leigh Chase. My friend since we were 14. My friend forever. I’ll never forget the day in our 8th grade P.E. class when we got “married.”  It was the most gorgeous, sunshiny day outside and we skipped off, holding hands, and went to pick the flowers on the side of the hill instead of participating with the activity that we were supposed to be doing. Instead, we decorated each other with flower hippie headbands and had some pretend to marry each other ceremony. 17 years later and here we are, mama. I am so proud to still be able to call you one of my best friends. I love you. And I am so happy you married Kasey in real life. Have a beautiful day my dear, sweet friend.
xoxo

I miss you. But I smiled though my tears for you.

 

 

Ronan. Hi baby. Missed you today. I woke up your brothers early. Well, early for us since we have been lazy beach bums sleeping in on most days. 8 a.m. was early for us today. I was tempted to let them sleep in as they looked so cozy and sleepy. They had to be at surf camp at 9 a.m. though, so waking them up was necessary. They so did not want to go. The both of them have been complaining that I signed them up for surf camp since I told them about it a month ago. Too bad, so sad, is what I basically told them. They kept insisting that they were not going to like it. I told them they wouldn’t know until they tried. It’s all week from 9-12. I got their cozy little buns out of bed, dressed and fed, and we headed down to the very cold beach this morning. They put on their little wetsuits and before I knew it they were off and running into the water. Most parents just dropped their kids off. I stayed and watched, took pictures, helped them and even got my sweats soaking wet as I was helping a little girl named Brooke, get out into the ocean. She was sooooo cute that I couldn’t resist. It was the best 3 hours I’ve had in a very long time. I was surprised how much I enjoyed just sitting and watching them and I was so impressed at how easily they picked up on it. Especially Liam. He really took to it and was really far out in the ocean with the instructor. He surfed up until the 3 hours were up. I am so proud of both of your brothers. They ended up loving it and can’t wait to go back tomorrow. I saw you while I was watching them. Those two little dolphins I saw the other day were out really close to Liam. I told Quinn it was you watching over Liam, to make sure he was safe in the ocean. He smiled and agreed with me. Thanks for that today, baby.

After the surf lesson was over, the boys were freezing so I took them over to the hot tub to warm up. Your daddy came down and brought down lunch to BBQ. We spent the next couple hours at the pool and the hot tub. After that, we headed back up to the condo. The boys were wiped out, but Quinn really wanted to rent one of those Surrey bikes that are in front of the Del. He has begged for weeks. Liam had no interest in going, and Woody had to work, so I headed off with Quinn to rent our bike. We rode all over the Island and ended up the school here. Quinn got a big kick out of my crazy driving and jumping the curb with our bike at the school. He was cracking up and I explained to him the importance of doing “boy,” things like that. I told him if you had been there, you would have made us do it over and over. In your honor, we took our Surry bike and jumped the curb 4 more times. We laughed the every time. It made me miss you so much, but it felt good to laugh with Quinn. I could tell the day meant a lot to him and it meant a lot to me as well. When we finished with our bike, we walked over to the Hotel Del to get him some ice cream. After our big day out, Quinn came back here and 20 minutes later, he was passed out cold. He slept for a few hours and woke up starving so I took him to get dinner. Liam, once again did not want to go. He is such a little homebody.

I have not had a day like today in a very long time. One where I almost enjoyed myself. Spending time with your brothers, watching them do something new, is the closest I’ve come to almost feeling happy since you left us. Happy, but I missed you a lot too. I know those two things will go hand and hand for the rest of my life now. I’ll always picture  you with us, in everything we do. I know today, you would have been out on that beach with me, with your boogie board, watching your brothers and mad that you couldn’t be out surfing with them. You were always trying to keep up with them and I was always amazed at how well you did. Your fire and zest for life was something I have never seen in anyone in my life. You took everyday by storm and that is something that I miss doing with you. Together, we were unstoppable. I miss having you everywhere with me so much. If you can’t tell, I have a  new little shadow now and his name is Quinn. He is stuck to me like glue and I am really trying to embrace him as much as possible. I can feel myself reconnecting to your brothers again, but Quinn is working extra hard to be by my side 24/7. Liam is so independent, that he is happy anywhere and has been spending a lot of time with your daddy. They are such similar creatures. I love watching the two of them together.

That is all for tonight my little monkey. I’ve got to try to get some sleep as we have another early day of surf camp tomorrow. I miss you more than words could ever say. I love you to the moon and back, baby. I hope you are safe. I still worry about you so much. I would give anything to be able to kiss those sweet little lips of your.  Sweet dreams, Ro.

I’ll follow you into the dark

Ronan. Hi baby. I miss you so much. This morning I woke up late and so did your brothers. I didn’t fall asleep until about 3 a.m., so we slept in until around 9. I don’t know what exactly happened this morning. Actually, I do. A couple of things. Your daddy called. He was upset. He said he had awful nightmares about you all night long and did not sleep well. His dreams of you are always the same. He dreams of the two of you playing together, and you are so happy. But then you die. Hearing your dad’s voice today shook me to the core. He was so upset, which in turn, upsets me.  I then got on the internet and I was obsessing over Neuroblastoma stories, treatments, doctors, etc…. It was like I was in a black hole and could not come out. Even though you are gone, and your little life could not be saved, I sit and obsess about what we could have done differently. It’s pure torture, but I also find the need to educate myself as much as possible. I cannot get this Dr. Sholler out of my head either. After an hour of reading, I was in a bad place. I came out of my room to make your brothers breakfast and the fighting between them started up. I lost it. I mean, completely lost it. I started bawling in front of them, telling them how I could not handle their fighting today. I told them how it was not fair that you just died, and how they need to be so thankful that they have each other and LIFE, as you didn’t have a choice to live life anymore. I told them, as I was hysterically crying, that I was so sad about losing you that I don’t even know what to do anymore. Uhhhh… maybe a little too heavy for 7 year olds, but today, I couldn’t calm myself down. I think I scared them and I know it upset them to see me so upset. They both ended up crying and wrapping their arms around me and telling me they were sorry. We sat for a while and cried together and talked about how much we miss you and how much we are all hurting. I told them how it is good for them to cry, how I understand that they are boys and they are going to fight, but today, I needed them to cut me some slack. Today, I just could not emotionally handle the fighting that I know is a natural part of being brothers. But today, I just needed a break. They gave it to me and after we cried and I got them settled down, I had them sit at the table and do some writing and workbooks. I mainly did this so I could get in my phone call with my therapist, Sarah. I closed my bedroom door and as soon as Sarah picked up, I was a blubbering mess. I don’t remember much about the beginning of the conversation, but I ended up calming down. I think she even got me to laugh about a tee-shirt we were joking I was going to have made. In fact, I know she made me laugh which is why I love her so much. She has that same dark sense of humor that I do. I eat that stuff up. It works for me. We talked a lot about you, of course. She told me how it’s like I’m living in a paradox world. I couldn’t agree more. That is so how I feel. We talked about your old soul, as we are both convinced that you are one. She thinks I am one as well and we both think that I have known you in a past life. I have no doubt that we have been together many times before you were born, Ronan. It is why our bond is so strong. After my talk with Sarah, I felt better. She pulled me out of the hole that I was ready to bury myself in today. I got off the phone with her and got Liam and Quinn ready to head out to the Padres baseball game with your Papa Charlie, Uncle Larry, and all of your cousins. They needed a day out and the baseball game was the perfect place for them.

Your Mimi Kay asked if I wanted to head over to Fashion Valley with her. I said, of course and we spent the day together. We had lunch and shopped a bit. We had a good talk about you. She told me how Papa dreams about you all the time and how you always have your hair. Mimi says when she dreams of you, you are still bald. I told her how I don’t dream about you. She said she is sure that I do, that I just don’t remember it. I hope she is right. Not dreaming about you is really hard on me. I would give anything to see you, even if it is only in my dreams. That is the best it is going to get for the rest of my life. I don’t even know how to comprehend this. How can you really be gone. How can only being able to dream about you ever be enough? It won’t be, but it’s all I have now, Ro. So please, come and see me and let me see you. I’m not scared and I miss your face so much.

After my day out with Mimi, we returned back to Coronado. Your brothers were on the lawn playing baseball with your cousins. I put on my running clothes and ran a fast 6 miles. After my run, I went and played baseball with everyone. It was sweet and fun but it also hurt. All I could do was picture you playing with us. You are always missing from everything we do and it is so hard to go on with everyday things like playing a baseball game. You would have been proud of the ball I caught in the air that got Liam out. You would have been proud of the way that I thought of you when I caught that ball. I think of you in everything I do. After the baseball game, we borrowed your cousin, Layne, for the night for a sleepover. I told you the quietness of having you gone is eerie. Having someone around to play with your brothers is good for us. The louder the better. It makes them happy and seems to help them. It helps me too. The quiet scares me and is something that I am not comfortable with.

If I could have any wish in the world, Ronan, it would be for you to come back to me. Please. I’m begging you. I don’t know what to do without you. I feel dead. I don’t think I’ll ever feel alive again. I know I have your brothers and I know how lucky I am to have them, but that still does not make the pain any better. How can I live without you? Is this whole thing even real? I said today to Sarah, I feel like I’m on that show “Lost.” Is this what Purgatory is like? I feel like I am trapped between heaven and hell and there is no escaping. All I want is to be with you. I cannot believe you are not here for me to kiss, to hold, to watch you grow up and play sports, to take care of when you are sick. I can’t believe just 30 days ago, I gave you a bath after you died and then had to leave you behind in a room as your body was carried out. I cannot believe the last words  you really said to me were to “Stop being sad, Mom!” That’s it. That’s all I get? It’s not good enough, Ronan and I don’t know what to do. I need you to guide me and to tell me that I can get through this because as of now, I don’t even want to. Everything hurts too much.

I’m sorry for unloading on you, little man. I talked to Doriet tonight and she is in the same place as I am. I hurt for her so much too. Esther passed away May 6th. You, May 9th. Two of the most special old souls that have ever existed. You two have brought us together and I know it is because you and Esther are together now, watching over us. You two will take care of each other just the way Doriet and I will take care of one another. By talking about you, loving each other, and going on because of the love we have for the both of you. Somehow, baby. Somehow I will get through this.

I love you Ronan. I love you to the moon and back baby boy. Sweet dreams.

xoxo

My little reading crasher

I awoke this morning from an email from my friend, Diane, who lost her little boy, Jack, to Neuroblastoma, a few years ago. She and her husband, Ed, held our hands through this entire process and are still continuing to do so. Something that I know cannot be easy for them. The four of us unfortunately, share a very special bond, but there is no one I would rather share it with then two of them as they are an amazing family. Diane’s email was from late last night, and she was wanting to know if I was up. I didn’t see it until this morning but as soon as I read it, I called her right away. Every year, Di visits a “Medium,” and she started doing this a year after Jack passed away. I totally am into this sort of thing and I know when the time is right, I absolutely plan on finding the right person to go to. Di went a couple of weeks ago, after Ronan had passed away and she told me that Ronan totally crashed her reading. Her medium went on and on about this little boy who is now with her son, Jack, and has a large crowd of peeps surrounding him. She also told Di that Ronan knows I write to him and it makes him happy and he knows it is helping me process things. While I was listening to Diane tell me these things, I was sobbing hysterically. There is not much I believe in anymore at this point in my life, but I totally believe that Ronan can hear me still. Maybe that is why I cannot seem to stop writing to him, because this entire time, although I didn’t even think of it this way, he can hear me and knows what I am writing to him. I don’t know where my writing comes from. It is something that just pours out of me at night from my heart and soul. It is something I cannot seem to stop doing and maybe this is my way of really communicating with Ronan. It is our way of staying connected. Whenever I sit and write, I feel so connected to him. I sometimes feel like he is the one putting all the thoughts in my head. He is the one who gives me the strength to continue doing so. This is one of his many gifts to me. All I know is I can’t seem to stop and I don’t want to. It is cathartic to me and Ronan knows this, so he continues to inspire me and push me. As long as I feel like I have things to say, I will continue on. What I write may not always be easy to read, and I so appreciate all of you for staying with me and not judging me. What I speak is the truth, raw, and real. It is the way Ronan would want me to continue on with his story. He never held back a thing; something I would like to think he got from me. He wouldn’t have my writing any other way. So Ronan, my very special soul. Thank you. Thank you for crashing Di’s reading and letting her know you are o.k. I know you are because of all the love that still surrounds you. I know I will see you again someday, little man. But now, I have to work my ass off on what we set out to do from day one of your diagnoses, which is raise awareness. I will not stop until things in pediatric cancer have drastically changed. I will fight harder for you than ever because I have to make you proud and I promised you we would tackle this together until people listened. Even though you are gone, I know you will be working just as hard with me right by my side. Together, we can do anything.

So, Ro. After I got off the phone with Di, I woke up your Daddy and Quinny so we could get going on our day. I got Quinn all ready for Legoland and Mimi, Papa, and Liam came to pick him up and off they went for their little adventure of the day. They had a great time. Your daddy and I got ready to head out to meet Denise from your favorite clothing line, Fore, Axel&Hudson. We decided to meet her in Laguna and I was so quiet on the car ride there. I was feeling such a mixture of emotions. I was anxious, excited, happy, but also really, really, sad. I have talked with Denise for months now and one of the thing I always said to her was how I couldn’t wait for the day to come when she could meet you and see in person and see how adorable you looked in her clothes and hats. Nobody could pull off a Fedora like you, Ro. Having to meet her today, was devastating to me without you. On our drive there, as we had just gotten to Laguna and we were driving in town, the tears were streaming down my face. I was begging you to give me a sign that you were with me. I was staring out the window and on my right was a store called, Esther. I almost couldn’t believe my eyes. I mean, how often do you hear that name and just when I was wanting a sign, there it was. 2 minutes later, I looked to the left and there was a store called To the moon. I couldn’t ask for a bigger sign than that Ronan. You and Esther together in Laguna. How random is that? It was almost so amazing that for a slit second I thought I made it up in my head. But I didn’t. I can’t wait to tell Doriet about this. I know this will make her as happy as it did me. I know the two of you are together.

When we got to Denise’s brothers place today, and I finally got to wrap my arms around her, everything just felt right. You would have loved her. She is one of the most real, pure, kind-hearted people I have ever met in my life. Everything she has done for you has been out of love for a little boy that she didn’t even know, but you captured her heart. Your daddy and I told her how happy all the clothes and hats she would send, made you. You were always so proud to wear them as you should have been because they are the so special and unique, just like you. We had a beautiful lunch and Denise wanted to know a bit about what we wanted to do with your foundation. We explained to her that research was our number one goal. I told her how I cannot get Gisele Sholler out of my head, even though I have never even met the woman, but she was the one who was going to help us in the end. I really want to meet her and I am really interested in the cutting edge things she is coming up with for Neuroblastoma. I also talked about Dr. Mosse at Chop. I believe in her and what she is doing as well. I believe in Dr. Kushner too, but my personal feelings are getting in the way of wanting to help him, although I know I should put these aside because he is a brilliant man. Like I said, when the time is right, we will know. I know you will help us make this decision. Funding research is our number one goal, but raising awareness is where my heart is truly at. Something has to be done to make people open their eyes. Baby steps, Ro. But we will get there, I promise my love. After talking to Denise about what we are considering, she had a proposal for us. She said she has talked with the two other owners of her company and they really want to get involved and make a difference. They have decided that they want to design a line of hats in your name and they want me to be involved in the design process. With a part of the proceeds going to your foundation. She had both your daddy and I all choked up at lunch over this. What an amazing thing to be a part of. We are so honored. The fact that one simple message from me, and this company jumped on the chance to help out by making you so happy with all the fancy clothes you used to love so much to wear, and they wanted nothing in return but your smiles. As of now, Neiman Marcus carries their line and The Garage in Scottsdale. They say certain people are put in your life for a reason, and it is clear that Denise is going to be a big part of our lives. I feel like I’ve known her forever and the connection that you have given us is such a blessing Ronan. We felt you all around us today as it was the most gorgeous day outside. I know it was you, smiling down at us. I know you were with us all day long. After a wonderful afternoon, it was time to get your daddy to the airport. He headed back to Phoenix today and it was hard to see him go especially after how emotional we both were today. I hate the fact that he is at our home, without us. But I know he is there with you and your ashes, so that makes me feel better. I hope they bring him comfort like they do me. I know you will take good care of him tonight and play with him in your dreams like you have been doing.

I came back to our condo and put on my running clothes for my nightly run. It was much needed after today. I only put in 4 miles again, and they were fast and easy. My running seems to come easily to me now because all I do is think of you. Time passes quickly that way. I didn’t do my nightly swim as I was wanting to get back to pick up your brothers from Mimi and Papa’s. They are both sound asleep, tired from their long day out. We all take turns sleeping with your blanket and Liam has it tonight. We treasure it so much.

Time to try to get some sleep, Ambian induced of course. I am convinced this is why I am not dreaming of you…. because it puts me into such a deep sleep. I am too scared to try to sleep without it now. Someday, but as of now, I’m not ready. I will know when I am ready to try to sleep like I used to. If I don’t take it, I stay awake all night and just sob about you. It’s too painful and I need the sleep to get me though the days. It takes a lot of energy to try to hold it together and being sleep deprived is something I don’t think I can mix into this madness now. I know you know this, but I miss you so much. I think about you every second of the day. You will always be a part of our family and we will never forget how you lived your life with such pride and dignity and you were never scared. Everyone could learn so much from you. You never felt sorry for yourself and you never stopped fighting; until I told you to. Thank you for listening to me for the first time in your life. As much as I wanted you to fight forever, I had to let you go to be free of your pain. Whispering those words to you was the hardest thing I’ve had to do in my life. But you loved me that much that you honored what I said to you. I am so thankful for that. I had to let you go and live your new life, the life you deserved to live here with us. I know you are free now and as sad as I am, I am happy for you. So go and play, baby. Go and cause all the trouble in the world and know that I will always be right by your side, loving you every second of my life. I will see you again, I promise you. I dream of that day, Ronan. I have a lot of work to do first and it starts with your daddy and brothers. I have to make sure they are going to be o.k. I worry for all of them and we have so much healing to do. Everyday that I see your brothers smile, it gives me hope. I am so lucky to have them and so were you. We all know this and treasure our time with you so much.

G’night my little man. Go spread your love around tonight and visit everyone who loves you so much. Twinkle Twinkle my baby star. I love you to the moon and back.

xoxo

Fuck you fucking world

Ronan. I’d guess I’d better get used to these days of not knowing how I’m going to feel and what to expect. I guess I’d better, because yesterday was so hard, that today had no choice but to be better. The Frakes came over this morning to tell us goodbye as they had to head back to Phoenix. We were all sad to see them go; we loved having them here with us. After they left, we walked into town and had some breakfast. It turned out to be a sunny and nice day over here at the beach. Liam and Quinn were so anxious to get down to the beach with your cousins. We spent about 4 hours down there today. They had so much fun boogie boarding, playing in the sand, and running back and forth from the beach to the pool. I spent most of the day in the ocean, trying to surf. The waves were small today and they were breaking really close to shore. It was still nice to be out in the ocean, alone, thinking about you. I felt peaceful out there, a feeling that I never get to feel anymore. I guess I feel closer to you when I am closer to doing things more associated with the earth and this big world. Being in the ocean makes me feel vulnerable which in turn allows for my guard to come down and I have no choice but to sit back, open up my mind, and try to push away the pain to allow myself to feel something for you other than hurt and sadness. I like this surfing thing so I think I’ll stick with it. After our afternoon at the beach, we came back up to our place and got ready to head into town for dinner. Quinn was so cute and wanted to wear his “fancy Ronan” clothes to dinner. Little Fedora hat and all. It reminded us all of you so much. You loved the way I would dress you up in with your matching hat and clothes. The entire time we were at the pizza place, all I could think about was how much you would have gobbled up all of the pizza and loved it. It was strange sitting there without you. Too quiet and Liam and Quinn are too well behaved. I was missing your mischief so much tonight. Some kid at the table next to us was screaming and crying. It was music to my ears.

After we came home from dinner, we met up with your cousin, Layne, who is just a little bit older than Liam and Quinn. We met him in the grass with his mom and sister and they all came up to drop Layne off for a sleep over. After I got them settled, I headed out for a late run. I only did 4 miles, but it was fast. I sat after my run for a long time and talked to you and looked up at the stars. I kept going back to the last couple of days before you passed away. You weren’t really talking to me anymore, but I must have asked you 50 times, where you were going. I knew you were going away, and I wanted so badly to know where you were going. Every time you I would ask you this, you would yell at me that you were going “NOWHERE!” That brings me comfort now. It makes me think you didn’t really leave me, that you are still here, right beside me. I so wondered what was happening to your little mind, what things you were seeing, and all that unknown stuff scares me so badly still. I still get sick to my stomach when I think about you having to die, to go through all of that and I couldn’t go with you. I still can’t get over that you are not mine to take care of anymore. I promised you that we were going to get you all better, I promised you so many things, and now I am left with empty promises that I didn’t get to keep to you. I know this was all out of my control, but it doesn’t stop the guilt from taking over. Your dad and I used to have the conversation all the time about how we didn’t know what we would do if anything ever happened to you or your brothers. We would go over all the crazy things that could happen, like a car accident, one of you getting hit on your bike, getting kidnapped. We NEVER thought about one of you getting cancer. It was never even on our radar because in our world, that just didn’t happen to kids. We didn’t even choose to really look the other way about it, because we were so uneducated, that it just didn’t exist. And now look, Ro. You, the most precious gift to everyone in our family, are gone. Just like that. Poof. How can this be? Were you really mine? While I was sitting at the pool today, watching the 3o kids all run around, I actually thought this to myself in my head. Were your really real? How could I have had 3 such blissful years with you and then in a heartbeat, it was all taken away? What did I do in my life to deserve this? Was it because I cried when I found out that you were not a girl, but you were a boy at our ultrasound? I think about this all the time. How fucking stupid was I? After you were born though, the whole wanting a girl thing flew out the window. People would always ask if I wanted to try for a girl and my response was that I was so happy to have my 3 boys that I couldn’t picture it any other way. You three boys were the best thing to happen to me. Having 3 boys was a dream come true. I’m so lost without you, Ro. The last few days, I remember asking you what in the world I was going to do without you. I don’t think I’ll ever figure that out. Life is broken beyond repair. But somehow, I have to hang on to the little that we have left, not for myself because I could care less about me….. but for your brothers and your Daddy. They are all that matter now. I can survive living like I’m buried alive. This is the burden I will carry with me for the rest of my life and I will do it for you. You will forever be burned into my soul and I hope someday that the sadness will fade away just a bit and I will learn how to smile without it being so fake. Because of now, every smile that comes from my face is so forced and not real. I have to smile to keep the tears from falling and there is nothing natural about my smile now. It hides all the pain that I am feeling. I can put on an o.k. show to get me through the days, but it is exhausting.

Ronan. You should be here. All 3 boys are out in the livingroom now, chatting away and watching a movie. I cannot tell you how much having your cousins around this summer is saving us. Your brothers are enjoying them so much. It’s times like these when you find out how much family truly means. We are so blessed to have them all surrounding us. It worked out perfectly that they just happened to be here at the same time we are. We are so lucky to be so loved.

Do you know what else we did tonight? After we walked home from dinner, we went past the Hotel Del where your Daddy and I got married. Quinn took a picture of us in the exact spot where we said our wedding vows. Almost 10 years ago, Ro. Who would have known our happily ever after would have ended up with us having to watch one of our children die. FUCK YOU FUCKING WORLD. Why was somebody so pissed that we did have the perfect life, because we did. And I’m not ashamed to admit it because we worked hard to make it that way, although the perfect life did come easily to us. It was all based on being a good family who loved each other so much. A mom and dad who were best friends, 3 healthy boys, no drama, no stupid nonsense like drinking, drugs, lying, cheating….. we were just so happy and content with all of our little blessings. We were so content and felt so blessed. You know your dad would tell me every other day how lucky we were. We knew this, we embraced it, and we didn’t take it for granted. I’m so angry at how you were taken away from us and now we are left with all this pain and sadness. Complete bullshit. I know you know this. You, most of all, did not deserve any of this, Ronan. I love you and I miss you and I’m scared of the person I’m going to become without you. What if I can’t do this? What if this is all too much and I just end up pushing everyone away? Because as of now, I don’t like the person that I am. I’m ignoring all of my friends…. my best friend, and your Godmom, Tricia, included. Who does this? I do. Because I hurt so much that I don’t want anyone else to have to see me suffer. I would rather do this alone but I know that is not going to get me through this. I know this, but you know how stubborn I am. You were the same way, little man. I think I just need time. Time to be alone and grieve for you by myself. You lived inside of me for 9 months and after that you really didn’t leave my side for almost 4 years. Having you just gone, I feel like I am dead too. I just need some time to slowly come back to life and my independent self knows it is going to have to be on my terms. Guess it’s the Capricorn in me. I will let you help me though. When you know I am ready, I will be waiting for you. I’ll wait for you for eternity, my love.

That is all for tonight, sweet baby boy. Please don’t leave me. Please stay by my side. I need to know you are here. I need you to help me get through this because no one else can. I love you to the moon and back, Ro. Sweet dreams.

xoxo

P.S. To all you lovelies who came out last night. Thank you so much. My post was a little angry tonight, but only because of my heart that is broken into a million pieces. I cannot even describe to you how much I miss Ronan and how shattered our world is without him. I am so thankful for you all and how many of you that love us; please know that. I am so inspired by the event last night that I really want to turn it into a yearly thing. Next year, I know we can make it even more amazing although I heard from so many people how wonderful everything was. Next year, I will be strong enough to be there and I hope you can feel in my heart how beautiful I think you all are. Thank you again, a million times over. Ronan’s story has to continue on, our love story cannot end just because he is gone. It is because of all of you, that I know we can do this. His love, his beauty and his life will continue on because of all of you and the way I know his soul will be there guiding not only me, but you as well. Ronan had so much love, fire, and fight in his heart that I cannot wait to see what becomes of him and his story. Thank you all again. I love you so very much; even the people whom I don’t even know, but cannot wait to meet. Sweet dreams my dear friends. May your dreams be peaceful and full of love.

Quinn and your shadow

 

 

Ronan. I really tried to have a good day for you, but everything seemed to hit me so hard today. Your brothers slept in late and so did I. I tried to dream about you, but instead I had mostly dreams of nothing of importance. I woke up sad from not being able to see you in my dreams. It is something I hope for every night. I tried to get the day off to a good start. I kept getting emails about the event that was being held at The Biltmore for your Foundation and each one continued to put a smile on my face. I thought today was going to be another o.k. day without you. It was not. It all started with opening my wallet and there was your little social security card. Ouch. I then looked inside my purse for something and found your little I.D. band from the hospital that you used to refuse to wear, so we would break the rules and I would attach it to your pole or onto my wrist instead. You used to throw such a fit about wearing it. The straw that broke the camels back was I was trying to get your brothers ready for the beach and Liam, as always, was giving me a hard time about letting me put on his sunscreen. I was chasing him around to get it on him and I finally just looked at him and said to him angrily, “You need to think about how you are acting, your brother would give anything to be wearing sunscreen right now.” He looked back at me and said, “Who, Quinn?” I then looked back at him and said, “No, Ronan.” I was filled with such anger and sadness that I just started crying right then and there. Right in front of your brothers, and I am supposed to be the mom who is holding all of us together. At that moment, I just couldn’t do it anymore. I broke down right in front of them and there was no stopping it. I sobbed and they both just sat and watched me. Quinn came over to hug me, and Liam just kind of went off into the other room. I quickly packed up our beach things and threw on my big sunglasses so they could not see that I was still a wreck. I took them down to the pool and to let them be distracted by their cousins whom they spent the next few hours with playing in the pool and at the beach. I went down to the beach with them and sat on my towel and just watched them play while I cried and cried and cried. I called your Nana because I have not spoken to her in weeks. I couldn’t really talk to her so instead I let her listen to me cry. She cried with me and we said as much as we both could, which ended up being not a lot. It was good just to have her be on the other end of the phone with me though. I just needed her to be there so I could cry to her. After I got off of the phone with your Nana, I joined the boys in the ocean. At one point, I was playing with Quinn in the sand. He was standing up and there was a little shadow next to him. He said it looked like it was a little mini version of you. We pretended it was you, and he reached down to hold your hand. I took some pictures of it, because it really did look like a little you. We sat and played with the little shadow for about 10 minutes. It was something so simple and sweet but it made us both smile and laugh. These days, we will take any little sign of you that we can get.

The rest of the day was kind of a blur. We spent the evening with Kenny and Stacy and their kids. We went to dinner and had a good time. They both make me so happy and I love them like family. We are so lucky to have them as friends. I then got a text message from our cousin, Tiffany who said to meet them at the beach as they wanted to do something special for you tonight. We met them down there at 8:30 and all of the kids ended up lighting off sparklers and running around for you. It was so beyond when sweet. Bittersweet. I sat back and watched all of your cousins running around so happy and carefree. I wanted you there so badly. I could have sworn I heard you laughing in the background.

All though the night I kept getting text messages about the event at The Biltmore. Everyone said it turned out so beautifully. I almost have don’t even have words for how many people came together for this in such a short amount of time. The love that surrounds us is almost as beautiful as you, Ronan. These people, most of them whom we don’t even know, have come together because of you. That is what an impact you have had on their lives and I know you will continue to do so. All while holding my hand while I let your little soul guide me. We will make a difference, together. Thank you again, to everyone who worked so hard to support my sweet baby boy tonight. Your love means everything to us. Someday, when I am feeling a little stronger, I will be able to be a bigger part of this and turn it into something huge. As I’ve said before, this is just the beginning. Childhood Cancer has know become my passion in life and I am going to work so hard to raise awareness and make a difference. Ronan deserves this as do all of the other children who are fighting this in the world. They need a voice and I have no doubt this is now my calling in life.

Off to try to sleep now as it’s been a very long day. I can’t wait to hear all about the event tomorrow. Thank you all again. Thank you for allowing Ronan to be your brightest star in the sky. I love you all.

Sweet dreams my little man. I love you to the moon and back. I miss you so much. G’night Ro.

xoxo