It takes a big person to tell me when I have maybe crossed a line. It takes an even bigger person, for me to listen to.

Ronan. If I had known I wasn’t going to have you forever, I would have taken a million pictures. I would have recorded your every word. Because the things that I have left of you, are not enough to quench my never ending thirst for you. You, my everything. You, my 3rd child. You, my baby. You, my best friend. You, my partner in crime who never left my side. Now, I only get you in the pictures I have left. The videos that hurt too much to watch. The beautiful things that I see throughout the day, that remind me of you. The memories that everyone that knew you, continue to share. Nothing will ever be good enough. Nothing will never lift this never-ending sadness of mine that seems to sink deeper and deeper into my bones every single day. I met a mom recently who lost her little boy to Neuroblastoma just a year and a half ago. She is young, beautiful, and funny, but carries around the same sort of sadness that I do. She told me, after being a year and a half into this, that the pain is no longer on the surface of her skin anymore. It is now in her bones. That is the best way I have heard the loss of you, described by another. I would agree with her. The pain is no longer on the surface; it is so much deeper than that. It may not be as sharp and raw as it was at the beginning. Now it is heavy as I think the loss of you has sunk in deeply. All the way to the bones in my body. I will continue to carry this heaviness for the rest of my life. I don’t expect it to ever get easier or lighter. I’ll bet it just gets heavier as time goes on, without you.

Your daddy is in Arizona. I am here, in Coronado with your brothers. This means mama mode, 24/7. It’s not easy. It’s hard to put my sadness on hold for your brothers 24 hours a day. I’ve been doing it as best as I can. I have been only breaking down to cry, when it’s night and they are tucked away, fast asleep. I am alright with crying myself to sleep, solo. It’s kind of what I do best these days. We have been filling our days with the normal things. Lots of beach time. Surfing. Swimming. Baseball. Laughing. Your brothers are happy. I notice that they get sad about you when things are quiet around here and we don’t have your craziness to fill the silence of the room. I can see it in their eyes, the way they miss you and your mischievous ways so much. They don’t have to say a word because I can read them both like a book. It’s tough for me to see. I don’t like to see your brothers hurt. They are such good boys. I’ve got them in bed with me and they both are sleeping so soundly. I know if you were here, this would not be the case. You would be snuggled up with me and your brothers would be sleeping together in their room. Or maybe by now, you would have wanted to be a big boy and sleep with your brothers in their room, without me. Either way sounds like heaven to me. It sounds so perfect compared to where you are now. Being separated from us is so very wrong. It will never be right, Ronan.

I panic about you a lot. I worry about you so much. Where are you? What are you doing? Who is taking care of you? Why is it not me anymore? These questions fill my head everyday, all day long. I don’t think I’ll ever have an answer which only makes my worry, worse. I asked your Mr. Sparkly Eyes a question today. Another one of the 500 questions I am constantly throwing his way. I said, “Do you think if I do enough good things in the world, that I will see Ronan again? He told me that he was absolutely sure that I would see you again. I told him I hoped he was right. That he is right about most things in life, so I would believe him. That may be one of the only things that will get me through this life without you. A life of constant do gooding, so I get you in the end, once again. The separation from you, is eating away at my soul. It’s almost too much at times. And Ronan, is May almost over? Because I hate it. It has been the longest, worst month, ever. May is some kind of sick joke and I feel like it has been 4 months, wrapped in one. I am so ready for it to be over. May can suck it.

I am thankful for the people in my life that care enough about me to shed some light on things that I may say, or write on here, that may not always come off as good. As I always say, I don’t re read what I write on here, and it’s been brought to my attention that I my last post… may have come off in a way that I did not mean for it to. I took a second to go back to my post and actually read it, again. I think it came off as I was bashing the Ryan House. I could see how my words, may have seemed like that. That was not my intent at all. Bear with me for a minute, while I try to take my words and put them a little more eloquently. I’m not always so good at this, so I will try, once again.

Just please put yourself in my shoes for a second. Imagine yourself, as me, going through the worst thing possible in life. Losing a child. To me, every single thing about going to the Ryan House, was scary. I wanted Ronan, to die at home. I did, for him. Because after going through 9 months of treatments, the only thing Ronan asked of me was to please go home. He always wanted to be at our home, with us, and nowhere else. Our house, always made him happy and it was always where he begged me to be. So, after 9 months of hospitals, clinics, strange cities, hotels rooms, and being separated from his brothers, it seemed as if the least I could do, was finally let him be at home to be happy and at peace. I had a lot of people surrounding me at this time. Everything was such a blur, but I vaguely remember going to the Ryan House, once we were told there was nothing else we could do for Ronan, to take a tour. I honestly don’t remember any of this, except for bits and pieces, here and there. I still remember thinking we were only going there to get his pain under control because the every 2 hours of morphine by mouth that I was giving him, was not working. At this point, going to the Ryan House was not my decision anymore. It was decided for me by my husband and close family and friends who I trusted enough to make this decision, for me. Once we got to the Ryan House, I was tucked into a room with Ronan and I don’t really remember leaving his bed much. The place was filled with family and friends and a safe environment was created for my twins which I am so thankful for. Ronan at this point, was still begging me to go home. I remember having to take a step back, and think about Liam and Quinn at this point. Letting them have the memory of Ro being at home, dying, did not seem right so I chose to listen to everyone else, and keep him there. As much as I am not thankful to the Ryan House, because as I said before, no parent should have to be thankful about taking their child to a place to die; I am thankful for the world it created for those around me.

It was at the Ryan House, that I watched death come in and transform my beautiful baby boy, into something that was almost unrecognizable. It turned his eyes hollow, his skin yellow, his body to bones, his lips white, and his flat belly, all boated and swollen. How could I have any good memories of this place? What mother would? Even typing out these words, trying to fix the way that I may have come off, is so difficult that I cannot do it without my hands shaking and tears streaming down my face. I live with these memories of my Ronan, every single day. The last moments of his life, haunt me. They destroy me. But I will be a big enough person to apologize to anybody whom I may have offended. Please know that was not my intent. I am just a mom. A bereaved mom to a child that should have never been taken to a place like the Ryan House because he should have never gotten sick with cancer in the first place. Looking back at everything I went though, I will stand by words and say that mistakes were made. This is my opinion and my opinion only, but to me, when a family goes through something like this, I think every resource possible should be available to them, not just one or two options. I don’t understand why rules, politics, and businesses have to exist, in a world where nothing makes sense. I see things from my perspective that I know, could have made things better. Maybe even a little less traumatic for a mom like me, who was in such shock from what was going on around her, but even then, I would have welcomed a stranger to come in, hold my hand, and gently explain to me what it was, that was happening to my little boy.

Ro baby. I have to end this now. I am not here to burn bridges, I am here to being open and helping to fix them. But I write. It’s what I do. I hope people can respect where I am coming from as I know it does not always seem fair or right. But these are my experiences and I would not be being true to myself if I started censoring my thoughts and feelings. I will be the first to apologize if my last post came off in a way of bashing anyone. As I said before, that was not my intent at all. I have a lot of pain, regrets, and sadness from what we have been through. I also see a lot of light and ways that they can be fixed for others families that will walk this path after me. All I want to do, is make this awful world, a little less awful for others.

I love you, Ronan. I miss you and hope you are safe.

xoxo

Breaking rules, changing Holidays

Ronan. Hi baby. Another day done. Looking back on todays events, although nothing major happened, it seems like forever ago. If I were to write a handbook on losing a child, because there seems to nothing out there about this subject, one of the things I would write about is how slowly time passes by. How the hours just drag on, and so do the days, months and I am assuming years as well. By the time I die, I’ll bet I’ll feel like I’ve lived hundreds of lives. As of now, I don’t really feel like this is a good thing. I’m just tired. And sad. I think I’m also starting to realize that I don’t think I will truly be happy again. I don’t think I will ever know pure bliss again like I knew before all of this cancer shit. Before the loss of you. My life, at best, will be filled with moments of happiness here and there, but the happy that once existed before all of this will never be again. Maybe this will change as time goes on, but I just don’t see how that is possible.

What did I do today?? No clue. Woke up. Didn’t want to. Texted Liz to see if she wanted to walk down to the Del to grab a coffee. She did. Quinn came with us. We got coffee and some yummy but very bad for you pastries and sat and ate them at a table outside. A girl named Katie came up to me with her little boy to introduce herself and to say how much she thinks of you. It was so sweet. They both were wearing their Rockstar Ronan bracelets. It made me smile and my heart melt all at the same time. Everybody loves you so much. Even strangers whom have never met you. It really is amazing all the love and support that has come of this. I will forever be grateful and humbled.

After our coffee, your daddy wanted me to grab him some bagels in town. Liz headed back and Quinn went with her. As much as I love being with your brother, the time to walk alone was nice. But then something weird happened. Something that I should probably get used to, but it still annoyed me. I was paying for our bagels and I felt like a hole was being burned in the back of my neck. I glanced to the side and there sat a family. A mom, dad, and three older daughters. They were staring with their sad eyes and talking in low voices. The girls had their backs to me, but were turned around in their seats while they all gawked. I don’t know if gawked is the right word here, but I’m using it anyway because that is what if felt like. At first, I thought is was my imagination so I just went on with my business and paid for our things. I could feel them all still staring, so as a natural reaction, I glanced their way to see if it was indeed true, and not just me making things up in my head. It was true. Once they saw me look back again, their eyes fell to the floor and they avoided anymore eye contact with me. I quickly rushed out of the bagel shop after that feeling very sad. I get it. Coronado is a very small place, a mini Phoenix. I know people know about you and just don’t know what to say. I know a lot of people just choose to say not say anything and that’s fine. But just a smile would have been nice. That way, maybe I wouldn’t have felt like a zoo animal on display. I hate the looks of pity. I understand the looks of sadness, but the pity looks only make everything even more painful. The looks of pity followed by awkward silence. I’m not a fan of that at all.

I walked back to the Shores trying not to get too sad about that I didn’t have you following behind me. I pictured you running on the boardwalk, doing something naughty like stepping on all the flowers. I pictured myself chasing after you, laughing, but trying to be stern about teaching you to respect nature. As tears started to form, I saw a woman walking in front of me, carrying a Paul Frank monkey bag. The tears stopped. I smiled instead. Then I got to thinking about life and how what if everything that happens is carefully orchestrated. That woman, that stranger, was put in front of me, in that single moment because I wasn’t supposed to be sad. She was put there to make me smile and think of you in regards to something that reminded me so much of you, in the form of happiness. My head starting spinning then and I took a deep breath and thanked you.

I came back upstairs and did my best to get on with the day. I failed. I sunk into bed and fell asleep for an hour. After kicking my own ass in my head, I got up and agreed to go to the beach with your brothers and daddy. It was warm out there today. We played beach darts, football, and I snapped a bunch of pictures. After a couple of hours, your daddy and brothers headed back up to the condo. I stayed down on the beach to finish my book. I now get to read books about sadness and grief. I am looking for answers that I am never going to find. What I wouldn’t give to have some trashy novel in my hands instead. What I wouldn’t give to be completely consumed in a summer beach read. I finished, “The Other Side of Sadness.” It was actually pretty good and interesting. It talked about surviving grief and how there is no step by step guide, which I am slowly figuring out. It talked a lot about different cultures and how death is perceived differently in each one. If anything, the book was informative in that way. I got a few good things out of it. A mother talked about losing her daughter after 9/11. She said one of the things she worried about most was forgetting the memories of her. After a few years passed by, the author asked her what bereavement felt like, years after losing her.She said, “It’s a bit like a fading light. It grows dim, but it never goes out, never, not completely anyway. I find that enormously ressuring. I used to worry that someday the light would disappear that I would forget, and then I would really have lost Claire. I know, now, that doesn’t happen. It can’t. There is always a little flicker there. It is a bit like the small glowing embares you see after you see a fire dies down. I carry that around with me, that little ember, and if I need to, if I want to have Claire next to me, I blow on it, ever so gently, and it glows bright again.”

I thought this was really beautiful. What a simple, non-complex way to bring peace to your heart. I know your little light will never flicker out, Ro. But it was nice to hear it from someone else, who has lost a child. Which I have also decided, is the worst thing that can ever happen in life. I’ve honestly thought about this for some time now, trying to throw in other losses that could even come close to comparing. There is nothing. Losing a child takes the cake. Losing you is like losing a million cakes all at once. I cried on the beach today at a lot of things said in this book. I took the time to sit, reflect, and watch the oceans waves all while being engulfed in the sound of two little girls building a sandcastle right beside me. Their dad apologized for their loudness. I wanted to say to him, it wasn’t loudness at all, but music to my ears. I watched them play for a while and then was determined to finish my book, which I did. Mr. Sparkly Eyes would have been proud that I actually finished it. I was proud of myself. For something so little, the fact that I am actually able to finish a book now is a big deal. Who cares that it takes me twice as long now. I did it, felt emotions from it, and now I can put it behind me. Check mark, please!

I came back upstairs, showered and got ready to go to dinner. We went to happy hour on the island and sat in the bar with Liam and Quinn. We had a really fun dinner. There seemed to be a lot of laugher, talking, and engaging. We have talked a lot about holidays and what are favorite and worst are and why. We have decided to make up a new holiday to celebrate on Easter. Woody says we should call it Feaster and make it all about food. I agreed as long as we could worship a giant chocolate Easter Bunny and not have to dress up in fancy clothes. Liam wants chocolate covered everything, including bacon and Quinn wants to play games. Sounds like we are on the right track to turning this into a lot of fun. I think I’ve said before that most holidays seem meaningless now. Easter is one of them for us. Down with Easter; Feaster is born. I would like to take it and put your spin on it of course, buddy. We’ll have to come up with some things that you would have wanted to have. I’m imagining huge glass bowls filled with your favorite, Candy Corn. I may have some funny shirts made up to and anyone wants to come is invited. Feaster is the new Easter at our house. We will not be giving thanks to Jesus Christ. Sorry folks. That’s not the way this holiday is going to be celebrated. If you are offended, sorry. If you are cool, come over:) We have decided after losing you, Ro…. that life is too short to do things you really don’t want to do. It’s time to start making up our own fun rules and traditions as a family. The Thompsons march to their own beat and we are going to embrace that now more than ever. You earned that right, you loved to break all the rules, so that is what we are going to do. Some rules really are meant to be broken in life, only to be put back together, much better than they had ever been before.

After dinner, we walked around and the boys got cupcakes for desert. I stayed away from those due to my stomach issues. All of my favorite things, sweets, cupcakes, frosting…. destroy me. It’s as if my body is rejecting them. Oh well. I’ll take rejecting them rather than scarfing them down. At least my pants will still fit:) We came back to the condo, I got dressed for a dreaded run. It was chilly out but I did it anyway. Just 4 miles up and down the beach. I sat down for a while and talked out loud to you. I like to talk out loud to you. I did a lot of talking and crying to you. It felt good to listen to my voice say those words to you tonight, alone on the beach. After our little pow wow, I got my sandy butt up and finished my run. I showered and Quinn had asked to watch, “The Cove,” on my computer. I thought about it and said it was o.k. Why not educate him and his  young mind on how corrupt this world really can be. He’s already had the worst thing possible happen to him, he loves to watch, “Whale Wars,” so let’s do it. I watched it with him and explained this is why I have a hard time going to Sea World and swimming with Dolphins. It is one of the saddest movies ever and those Japanese “Fishermen,” need to be stopped. Watch the movie if you haven’t seen it. You will be so appalled that you will want to help expose what is going on. They are slaughtering those beautiful creatures left and right. It is beyond sicking and maddening. Especially to me now, Ro. After all the time we’ve spent watching the dolphins here, it makes me even more upset. What is wrong with people in this world?? Are they that selfish and greedy?? The slaughter of these poor innocent mammels has got to stop. How am I supposed to take on Childhood Cancer and this Dolphin slaughtering together?? I feel like it is my second calling in life. I felt that way when I first saw this movie. I am totally passionate about it and I think it is a beautiful thing for my boys to learn about. They have already learned about death in a way they should have never known, but now they can take this and turn it into nd learn how we need to respect these beautiful mammals, and how if you are passionate enough about something, that you can change the outcome. Sign me up! I’ll kick cancers ass and the japanese fisherman’s as well!! Bring it on, yo!!!

It’s going to take shit like this to get my ass out of bed in the mornings. I am planning on jumping back into boot camp next week. I need to email Tammy to tell her if I don’t have a reason to get up, I’m just not going to. She needs to be my reason for a while. Until I find a new reason. Although, waking up for her boot camps were always my favorite reasons to get up and exercise in the mornings. I hope she’ll save a spot for me:) Phoenix Adventure Boot Camp is by far, the best one in AZ. Tammy rules!!!!

Do you all see what I’m doing here? I’m slowly planning little things so that I don’t barricade myself in Ronan’s room and never come out. Ro, I can not, not, live for you. God. You would be so mad at me for my sadness and anger these past couple of weeks. You would be so mad at me for laying in bed. I’ve got to get up and do things for you. I don’t have a choice. I’m not willing to go down so easily and just die. Then what? Then everybody loses. I’m going to stay in this fucking fucked up world without you, and try to change some things. You would want this. You would be proud. As much as I want to escape into a non reality world, which means hiding in bed, ignoring everyone, not taking care of your Daddy, your brothers, our house…… I just can’t. I can’t have your brothers remembering me as that mom. They’ve been through enough already. I can do this, Ro. Just promise you’ll always be right by my side. I feel like you are, I really do feel you during the day. Please don’t ever go away, Ro. I already miss you so much.

Alright little buddy. My favorite not spicy monkey boy. I love you to the moon and back. I hope you are safe. I hope it’s a kissing day because I miss your sweet little kisses so much. Sweet dreams.

xoxo

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.

Sunday, bloody Sunday

Ronan. Sunday has always been my least favorite day. Sundays to me are depressing, sad, and I’ve never liked them. Why should today be any different? Let’s start with the fact that I didn’t fall asleep until 6:30 a.m. I had an awful night last night of worrying about you, about life, and I couldn’t get myself to wind down. I ended up popping an Ambien at 5:30 a.m. I was being stubborn because all I wanted last night was to fall into a blissful, non medicated sleep, and dream of you. Instead, I fought off the demons that now live in my head until I could take no more. Ambien induced sleep soon came and as I was halfway between being awake and sleep, I was holding my phone looking at pictures of you. I remember falling asleep and I was touching the screen on my phone with a picture of you smiling. I swear the picture came alive and you were moving, laughing, and smiling at me. I played with your face on the screen of my phone until I finally went into my coma. I don’t remember dreaming of you at all, but I played with you before I drifted off for the next five hours. When I finally woke up, I told your daddy that we should get out and go grab a late breakfast somewhere. We headed off to some restaurant a lady on the airplane had told him about. I don’t even know where it was, except we had to leave the Island of Coronado to get there. It was a really cute restaurant, and I sat on the patio with your daddy and brothers. We all ordered breakfast and I was just sitting there, looking at home handsome your brother, Liam is. I stared at him for a few minutes and then the crying started. I couldn’t stop the tears from pouring, your daddy just looked at me and brushed them away, and I put back on my sunglasses. There was a table of people right next to us. I nicknamed them “The pretty people,” in my head. They must have been in their 30’s and they were celebrating a birthday. Their table was full of so much happiness, laugher and love. I used to know what it felt like to sit at a table like that. Not to have a care in the world and everything was so carefree and pure. Now, the table I sit at is full of tears and sadness with a reality that I never wanted, but will always be mine. I will wear these scars for the rest of my life and they will never fade, because you are missing. Because you didn’t get to be a breakfast with us today, nor will you ever be again. I pictured you with us though. You would have loved the gooey cinnamon roll Quinn and Liam had. You would have gotten the frosting everywhere and probably wiped it all over Quinn. You would have taken the pure sugar chunks they had sitting out to sweeten the tea with and chucked them across the table at one of your brothers. I would have done my best “Ronan Sean Thompson! Use your manners!” to you as I tried to scold you but I would have ended up in a fit of giggles. Your naughty ways were always my weakness. Your carefree spirit, freed my soul.

I was writing last night to Mr. Sparkly Eyes and my exact words to him were, “Ronan completed everything in my life. Everything. After I had him, I finally for the first time in my life felt complete, whole, and perfect. He tied our whole family together in a big, pretty bow.  Now what? What do you do after that is gone? Survive I guess. Float, so you don’t sink. Swim, so you don’t drown. Go on. Move forward. Continue to fight. Fight to stay alive, to get out of bed, for that glimmer of happiness that I sometimes get to feel during the day.” Those were my words last night and you know it’s my truth. I’m fighting baby. I’m fighting every second of the day to hold on to you, to me, to your brothers, to your daddy. I won’t let go no matter how much I want to give up. I won’t let you down.

After our breakfast of tears, we explored the streets a little. Walking down the sidewalk, did you see the 4 of us? I know you did. We were all walking down the sidewalk, holding hands. All of us, linked together. I turned around to find you, expecting you to be running behind us. When I realized you weren’t there, I had to let go of your daddy’s hand. I couldn’t  hold on without you. The tears burned my eyes, but the pain in my heart was worse. Everyday seems to be getting harder and harder. I did forget to tell you about something so silly that happened last night though. Something that made me happy. After the crazy ocean swimming night I had with your brothers, we all went to the hot tub. When we returned back to the condo, Quinn realized he had forgotten his flip-flops down by the pool. I took his hand and told him we could walk back to the pool to get them. We got to the pool, but it was after hours so my card that lets us in, wouldn’t work. Quinn was devastated but I tried to tell him we would come down in the morning to get them and it was no big deal. His eyes got all teary as you know what a little worry wart he is and he was upset that they would be gone in the morning. I told him there was nothing I could do, but the look on his face  told me I had no choice to somehow get into the pool and rescue his darn flip-flops. So you know what I did?? I looked around to see if there was any way I could scale the concrete wall that surrounds the pool. I told Quinn to hold my things and I somehow managed to hoist myself up and over the wall, and I landed on the other side where his flip-flops were waiting for me. You should have seen the smile on your brothers face. I smiled at that and the thought of you and how I knew you were watching me, “break the rules,” as we used to love to do. Quinn told me that I was the best mom ever and now he understands why I like to run all the time and why it’s important to me. He said it’s so I can do things like that and he bets no other mom would have done something “so cool.” It made me giggle. He’s been talking about it non-stop to me since it happened last night. Sweet boy. The smile on his face was priceless. It made my night.

I ended tonight with my late night run and a movie night on the couch with your daddy and brothers. I’m going to say goodnight now baby. My most favorite movie in the world is on, “Lost in Translation.” I’m going to try to unwind while watching it in hopes for some sleep. It’s a movie I will never get tired of, no matter how many times I see it. It’s a good way to end just another painfully hard day. I miss you so much. I hope to see you soon. Sweet dreams, my blue eyed boy. I love you.

xoxo

 

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.