The day you died, the day you were born and the day you died again because you were put in a urn. Happy should have been 7th birthday, my spicy Ro.

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Ronan.  I didn’t die from the fuckwad of May dates that I had to get through.  The day you died. Mother’s Day. Your birthday, which was also the day you were cremated. And the day we had your celebration of life aka a bullshit word I think I let everyone around me make up when it should have just been called “the most fucked up reason for a funeral” because that is how I really feel about it.  We went away for May.  It was as good of a trip as it could possibly be, despite the circumstances.  We went to New York and spent about a week out in the Hamptons with our dear friends who are pretty much the only reason I got through everything alright.  On the day you died, I didn’t sleep much.  I tossed and turned the night before and sent my same text that I send every single year around 3:20 in the morning to Mr. Sparkly Eyes because he was the first person I texted after you died and I’m weird with my rituals like that.  I said what I always say which is how I hope he never forgets how much you loved him.  How thankful I am for him and the role he played in your life and how I will never forget how above and beyond he went for you and continues to do so in this life now.  He called me a few hours later and I ran outside, barefoot so I could talk to him without waking up the entire house.

“Are you o.k.? That is a stupid question. I know you are not.”

I told him it was ok, that I was as o.k. as I could possibly be. I didn’t cry this year when he called for some reason.  I just let his words sink in and took his advice which was basically, “You don’t get to stay in bed today because that is not fair to Ronan or your other kids, so go out and do something.” I told him I would and I listened again as he told me how sorry he was.  I thanked him for calling and told him to please go and do something for you today, besides work.  He said that he would.

We spent the majority of the day, outside in the cooler temps by the ocean.  We played in the grass, rolled down hills, climbed to the top of a lighthouse, watched Poppy go to town picking flowers and ended the night by jumping in our freezing cold pool.  We were pretty much surrounded by friends the entire time we were in the Hamptons and it is because of this that our days and nights were actually filled with smiles and laughter.  Poppy kept everyone on their toes with her constant dancing to Pharrell Williams, “Happy.” A couple of years ago I know hearing this song would have thrown me right over the edge.  Now I am able to dance and sing to it and I know that is all because of her.  How can one not feel happy watching a one year old pump her little arms and rock back and forth on her chubby little legs to the beat of this song? Impossible even when you have an almost 4-year-old in an urn and kissing that goodnight is the closest you will ever get to kissing his little body again.

We spent your birthday in the city.  We started it off by grabbing pizza at your favorite place which is right by the Ronald McDonald House.  We then walked through the city a bit and went to see our good friend, Scott at Solving Kids’ Cancer.  Your daddy hadn’t met Scott before but they talk a lot on the phone.  I was beyond excited for the two of them to meet because 1)Scott is amazing and 2) They remind me a lot of each other. Of course they hit it off and seeing the two of them together made me smile on your beautiful day. I stepped out of our “meeting” and ran across the street to meet up with a favorite editor of mine in the literary world.  It was so good to hug her and catch her up on this book/life/fuck cancer/she couldn’t believe it was your 7th birthday.  She was so good about checking in with me to see that I was alright the entire time we were together. Our time together was so nice and I was so glad I got to introduce her to your daddy since he hears me talk about her so much.

After our impromptu meetings, we continued to do all your favorite things in the city.  Poppy took the streets by storm of course and I did my best to let her have a little freedom, while trying to keep her safe from getting run over by the crazy NYC taxis.  It was the first time in my life that I understood why those parents put their kids on leashes; because I totally wished I had one that day.  Instead, I chased your sister down the sidewalks as she took off without looking back at all and after a minute I would have to grab her from behind, pick her up to keep her out of harms way, all while she screamed bloody murder for me to put her down.  She seems to have turned a corner since turning one and I’m not sure there is any going back.  Miss Independent EXTRA spicy Poppy it is.  I, of course wouldn’t have it any other way.

We walked as much of the city as we could.  Stopped for a little pit stop in Central Park so Poppy could actually do some real running.  I plopped down in the grass, exhausted from a beyond mentally exhausting day.  Your brothers ran all about and your daddy took your sister to play on the playground while I stayed behind, laying in the grass and looking up at the sky.  After about 10 minutes, all the tears I had been holding back came pouring out and I just gave in and let them, not caring who would see.  My little, Rachel, came walking over soon after as she had been trying to find us in the park.  Just in time for me to bury my head in her lap while telling her, “I haven’t been very spicy today” as the snot dripped out of my nose and tears plopped out of my eyes and on to her jeans. She stroked my hair and said it was alright.  I cried for a few minutes more and then got up to decorate the most beautiful tree with a ton of your Ronan bracelets.  I had to do something spicy, so I climbed up the tree and sat there for a bit.  I can’t remember the last time I’ve climbed a tree and I wonder why.  It was lovely up there and so something you would have done.  At this time, it was getting dark so we parted ways with Rachel and ended up back at your favorite pizza place, one last time.  We had one last thing to do which was our random act of kindness so we bought a ton of gift cards at the pharmacy next door and I took your brothers and marched my little butt right back into that Ronald McDonald House where we spent so much time.  I told them I wanted to drop them off to give out to the family’s that were staying there.  I had a flashback of you in the lobby there, right when we arrived and you were wearing your cute little warm hat, standing on the luggage carrier giving me the biggest smile as if you trusted me with your life because you knew I was going to get you better and fix all of this.  I’ll never forget the look in your eyes as they sparkled so bright and were full of such hope, trust and love.  I’m so sorry that you will never get to be 7 and instead you will be always almost 4. I’m so fucking sorry.

Ending this now with some words I read a while ago and I like to read them again when everything seems to be lost in the world, but I know it’s not because once upon a time, you were mine and I was yours.  You always will be mine, even if you are not here but somewhere else where I know I will see you again.  I wish knowing that made things hurt less, Ronan.  Sometimes this pain is all too much.

I miss you.  I love you.  I hope you are safe.

On this day, you read something that moved you and made you realise there were no more fears to fear. No tears to cry. No head to hang in shame. That every time you thought you’d offended someone, it was all just in your head and really, they love you with all their heart and nothing will ever change that. That everyone and everything lives on inside you. That that doesn’t make any of it any less real.

That soft touches will change you and stay with you longer than hard ones.

That being alone means you’re free. That old lovers miss you and new lovers want you and the one you’re with is the one you’re meant to be with. That the tingles running down your arms are angel feathers and they whisper in your ear, constantly, if you choose to hear them. That everything you want to happen, will happen, if you decide you want it enough. That every time you think a sad thought, you can think a happy one instead.

That you control that completely.

That the people who make you laugh are more beautiful than beautiful people. That you laugh more than you cry. That crying is good for you. That the people you hate wish you would stop and you do too.

That your friends are reflections of the best parts of you. That you are more than the sum total of the things you know and how you react to them. That dancing is sometimes more important than listening to the music.

That the most embarrassing, awkward moments of your life are only remembered by you and no one else. That no one judges you when you walk into a room and all they really want to know, is if you’re judging them. That what you make and what you do with your time is more important than you’ll ever fathom and should be treated as such. That the difference between a job and art is passion. That neither defines who you are. That talking to strangers is how you make friends.

That bad days end but a smile can go around the world. That life contradicts itself, constantly. That’s why it’s worth living.

That the difference between pain and love is time. That love is only as real as you want it to be. That if you feel good, you look good but it doesn’t always work the other way around.

That the sun will rise each day and it’s up to you each day if you match it. That nothing matters up until this point. That what you decide now, in this moment, will change the future. Forever.

That rain is beautiful.

And so are you.

 

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What birthday?? Let’s run a marathon instead, fucker.

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Ronan.  Today didn’t start out extra hard, but that is how it has ended up.  So much has been going on.  Too much, I suppose.  I made it through my birthday as best I could.  It it any surprise that I didn’t feel like celebrating?  I just wanted the day and night to be over as quickly and painlessly as possible.  I didn’t even let your daddy buy me a birthday gift and he is still talking about it, today.  He’s begged me over and over to please let him buy me some pretty earrings.  He knows if he goes out does it himself, I’ll just return them.  Pretty earrings won’t bring you back and that is still all I want.  NEWSFLASH PEOPLE, I STILL WANT MY DEAD SON BACK AND TIME HAS NOT MADE THE YEARNING FOR HIM GO AWAY.  I still beg for him every single day.  So sorry to disappoint some of you who seem to think because of this thing called time, that my wanting my son back will just disappear.  That because Poppy is here, she magically makes all my pain and sadness something of the past.  She doesn’t.  Yes, she brings back such wholesome goodness into our lives, but my pain is still here and just as present as before.  I sat with your Sparkly for a while on my birthday because it’s a tradition of mine now, 4 years in the making.  I sat across from him as he said, “What did I say, to make you cry on your birthday?” as he watched me wipe my eyes from behind my glasses. I told him that it wasn’t anything that he had said, that I just missed you so much and my birthday seemed to make me miss you that much more. He said he knew and how sorry he was and did his usual, I wish he were here, too. I came home and threw myself into bed for a few hours in the middle of the day and woke up to a pillow soaked with tears that I don’t remember crying, but the black mascara was evidence enough that they had been there.  I survived my birthday but birthdays to me will never be the same again as they just make me very, very sad.

After my very unbirthday, I’m not celebrating a thing, I had to get ready for that bitch of a marathon that I said I was running.  I didn’t really train at all except if you count going for some runs here and there, training. In my mind, I train for a mother fucking marathon everyday by just doing life.  I talked our Bri Bri into doing it with me as well.  She didn’t train at all either but I told her at 19 years old, you can do anything in the world, including running 26.2.  We got up that morning in preparation for the day.  I made us a little food, and we whispered in the dark about how excited we were to run this thing.  I took out a Sharpie and did my usual writing of your name everywhere I could.  I told Bri I was going to do her arms and she could do mine for a little extra running motivation.  I wrote, “Ronan” down one arm and of course “F U CANCER” down the other.  I handed her the Sharpie and told her to do my arms next.  I looked down at my arms after she was done.

RONAN was written perfectly on my right arm and I looked down at my left arm to see the word, “FUCKER” written in huge, black letters on my left arm.

“BRI! You wrote “Fucker” on my arm!” My whispers were no longer whispers.

“I know!” she said.  “I thought that’s what you wrote on my arm!”

“No! I wrote F U CANCER!”

We both were doubled over, laughing hysterically for a good five minutes before we could compose ourselves.  There was nothing I could do about it as the sharpie was not coming off and the car that was picking us up to drop us off, had arrived.  I decided just to roll with the word FUCKER down my arm and to see what added fun it might bring to the day.  Besides, cancer is the biggest fucker anyway.

We got downtown to meet up with my dear childhood friend, Laura who came into to town to run the marathon as she actually trained.  I had a sweatshirt on but told her the fucker story anyway to stop her from crying.  It is an emotional thing to do a marathon for the first time, and on top of that add the reason that you are doing it is for your childhood besties, dead son… well, game over.  Laura was officially a wreck but the fucker story definitely made her laugh and I think she had an even better time, calling me fucker throughout the marathon.  So did the spectators on the street.  The entire marathon I heard, “GO FUCKER, GO!!!” or “F U CANCER” or “GO RONAN!” as that is what we had on on the back of our shirts.  I got asked who you were and I always said, “My son.” I didn’t say, “My son who died of cancer,” because to me that is not who you are and I won’t let that define you.  I was doing pretty well in the marathon until about mile 17 and that was pretty much it.  I hit that invisible wall that you hear people in the marathon world, talk about.  I started walking, grabbed a gatorade that a lady was handing out on the side of the wall and chugged that thing like it was the last drink I was ever going to have.  I waited for my friend, Katie to catch up to me where we walked/jogged/begged for the finish line.  Bri met back up with me at mile 21 and somehow, we crossed the marathon line together, holding hands.  I’ve never been more proud of my sissy in my life.  She is such a little badass in training and I am so honored to be showing her the ropes.

I wanted to also take a second on here to thank all of you who supported me in the marathon by donating, volunteering, cheering or running yourselves.  It wasn’t just Ronan I thought about while doing this, but you all as well.  You kept me going when all I wanted to do was take the short cut, call it a day, and run back to my house.  I love you all so much for never giving up on me and for pushing me to do really hard things, just so I can remind myself that I am capable of overcoming all of the odds even on the days were I still do just want to crumble up and die.  You remind me to get back up and fight harder than I ever have before.  So thank you, from the bottom of my heart for keeping me going as I try my hardest to change this for these other kids who deserve so much better than what they are getting tossed their way.

Oh, back to today and how it was a really, really, really fucking hard day.  So hard, that I am too tired to write about it now, Ro baby.  It was just one of those days where I really felt like I had the wind knocked out of me because I just miss you so very much.  I have to get back to this book writing now.  I’ll try to check in with you in a few days.

I miss you.  I love you.  I hope you are safe.  Sweet dreams, baby boy.

xoxo

Only Eddie Vedder could drink wine on a stage and make it look badass.

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Ronan.  Do I usually have this hard of a time, every year, right before the holidays? I think so, but to know so, I’d have to go back and read my blogs from the past years.  I’ve been doing enough reading of my blogs due to this book writing and I don’t feel like going back to read about the holiday seasons and how hard they have been for me every year since you left.  Every day is hard without you, but this time of the year there seems to be a shift about me that I cannot control.  Everything feels extra heavy, hard, sad, and the slightest things take up every ounce of energy I have just to get through the day.  I have been getting through the days alright really; I suppose.  That is actually a big fat lie.  I’ve been a fucking mess, but hiding it pretty well.  I’ve learned to become the ultimate pain hider.  I have learned to be present, to smile when all I want to do is cry, to be productive when all I want to do is curl up in my bed for a week, and to throw myself into things that take a lot of work, but the work leaves me distracted.  Oh, I’ve also been taking the best care ever of your Poppy sister 24/7.

I may have lost it last week which left me doing my normal screams and crying to your Mr. Sparkly Eyes.  “I think I’m having a mid-life crisis.” “Why the fuck did this happen?” “I talked to George Clooney last night and I’m going to run off with him.” (inside joke, but I really did freaking talk to George Clooney thanks to one Fairy Bad Ass RoMo) And my all time favorite, “Where is Ronan and who is taking care of him?”  I got sat down and talked to in the harshest but kindest way.  I was told I was in fact not having a mid life crisis, that everything I am feeling is just due to losing you which I of course already knew, but it was nice to hear it from a rational person.  “Listen, I cannot even fathom what you have gone through and will go through for the rest of your life.  I hurt badly from this and I only get to feel this on a small scale compared to you.  You have to carry this around with you forever, while the ones who cared about Ronan, your family, your friends, get to go on with their lives.  You don’t.  I cannot imagine what that must feel like for you.  But you are doing such amazing things and even if you can’t see it now, you are changing the world because of him and because of your pain.” I sat, listened, and fought back my tears the entire time that I was with him.  I let his words soak in and lick my wounds for a while.  “Tell me what I can do for you. Please.” I looked down at the floor and thought for a bit.  My list came in my mind later as I named off a few things, but really just thanked him for being such a dear friend.  He said some more things to me that I won’t repeat, but left me saying, “How do you know that?  How do you know everything?  Nobody knows that.  Does Ronan talk to you and tell you these things?”  I honestly think you do, Ronan.  There is no other way to explain how that man knows the darkest parts of my soul and heart, yet he is not afraid.  You only left me with the best and for that, I will always be thankful.  I sat quietly and watched as he bounced your baby sister on his lap and kissed her up and down.  She is so lucky to have him as her Godfather, to love and look after her.  I know he will keep her safe.

I’m full fledged in the middle of writing this book.  I told your daddy if I had a month, uninterrupted, I could finish it, easily.  The problem I’m facing is I may have too much material, and too much to say.  Go figure.  I’ve been writing about your treatment, which has been hard.  Reliving the things you went through, has not been fun and it’s not what I want this book to be about, so I’ve been trying to make this section, as short as possible.  This book writing has left me not sleeping or eating well and may be part of the reason why I feel like I’m no the verge of a breakdown.  I just keep telling myself, I’ve got to just get though this part, but it’s not like I have anything to look forward to next as I will just be writing about your death.  Fucking cancer.

As far as an update goes, things here for the most part have been normal.  Your brothers are playing a slew of sports 24/7.  Basketball, Baseball, and Flag Football.  I, of course, look for you on every field and on every team.  It still blows my mind that you are never there.  I know for a fact that you would be playing all the sports that your brothers are and dominating in every way.  You were always are mini Pat Tillman who was going to rule the world.  Poppy is developing such a little personality and at 7 months, is already trying to walk.  She has been keeping me on my toes and the determination that I see in her eyes reminds me so much of you.  My days are mostly spent taking care of her while continuing to fight for you and all that was stolen from us.  I’ve been hiking like crazy, with Poppy in tow of course.  She loves it and usually just falls asleep the entire time.  It’s our peaceful time to spend with you and the small time out of my day that I try to take for myself to be with my grief/plot how I’m going to take over this fucked up world.  I went to the Pearl Jam concert a few nights ago with your daddy, Uncle Jay, and Char.  Sometimes all you need in life is a little Eddie Vedder to remind you of who you really are.  I love that man and the concert was unreal.  By far one of the best ones I’ve been to.  Eddie Vedder will forever be one of my idols in life as I appreciate so much how he just lives his life the way he wants, with no apologies.  He just is who he is.  Not to mention the fact that he is deliciously handsome, insanely talented, and I could just stop and melt right here.  It was a great night, to say the least.  Pearl Jam ended the concert with “Keep On Rocking In The Free World,” and of course I sang along as loudly as I could while I thought of you the entire time.  I miss you so much, Ro.

Time to go, little man.  It’s raining like crazy here today.  I miss you.  I love you.  I hope you are safe.

xoxo

P.S. For those of you who have been trying to order some things on our Big Cartel site, I SO apologize.  We have been dealing with some *cough cough* technical difficulties.  It is being worked on and will be re launched soon as we also have a new foundation logo to unveil.  Our seal needed a little make-over and update.  I’ll keep you posted on when things are ready.  Thanks as always for your love and support.

I made a new friend and I know you are going to look after her.

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Ronan. Today is 28 months without you and it’s pouring down rain in AZ, naturally.  You always bring me the rain when I am the saddest. I was up on and off through the night.  Waiting for that 3:25 a.m. time when you left this world.  I felt like screaming and throwing fists everywhere until I looked over at your Poppy sister who was sound asleep beside me.  No screaming and crying fits allowed when a peaceful baby is sleeping beside you.  I sent an email to Sparkly instead and screamed and cried to him.  FUC.  I hate cancer.

Dr. Sholler is in town. I took her hiking up Camelback last night. Holy hell it was hard as I have not hiked Camelback since I was about 8 weeks pregnant with your sister. It felt good though and we ended up totally making it a danger day since it was dark as we were coming down. That Dr. Sholler is such a badass that she was fine with it.  We talked a lot about life, loss, this cancer world and how wrong it is.  I like spending time with her as not only a doctor, but on a personal level as well.  I’ve never met a doctor like her who just as passionate about her research, as she is the kids she is treating. She never forgets the faces behind this disease which is a big reason why I love her so much. She won’t ever forget your face and she never even got to treat you.  One of my biggest regrets in all of this is that, but as I am learning, regrets in life will get you nowhere.  It’s about moving forward and making the changes you can with the cards you are dealt. Even if it is the shittiest deck.

Our weekend was spent hanging around at home. Brianna and her girlfriend, Taylor who both just moved here to go to ASU, came over and stayed the night on Friday. Things like this that make me so happy, yet make me so sad, too. Your Brianna Boo, who loved you so much has finally moved here and we get to do such fun family things together, all while you are not here. I spent all Friday night and Saturday morning doing her laundry, your Daddy and I cooked her homemade meals, everyone went to your brothers basketball game, and I took the girls for mani/pedis, too. All while you are not anywhere to be found and I still have a hard time wrapping my head around this reality, our reality which I know is also the reality for so many others out there who are dealing with the loss of a child. It’s a reality that you never get to escape from or take a break from. It’s a reality that is a lot to carry around and the load never gets any lighter. But hey, thank you White House for saying NO to our little petition and thank you Empire State Building for also DENYING our application to light it up GOLD one day in September. So nice to know you will turn The Empire State Building Orange in honor of Nickelodeon on September 16th though. BARF.

Are you freaking kidding me?! This is an outrage and beyond insulting. Does anybody have any pull with the Empire State Building? Maybe if we all send in 5000 applications, they will listen. Here is the form if you so kindly, want to fill it out.

http://www.esbnyc.com/documents/ESB_LP_Questionnaire_FINAL.pdf

Today, I did my Skype interview for Emotional Mojo. I think it went well. I had a lot of fun doing it and one of the producers I’m working with, is awesome. I sent her a little email this morning, just to cover my bases. It went a little something like, “Hey CeCe! Can I cuss on air?” She replied back with something funny like “Noooooo! We are LIVE! If you cuss, you will be thrown into a black abyss and your message will not get out!” She told me to tape a sign to my computer that reminded me so cussing allowed so that is precisely what I did. Worked like a charm as no F bombs were dropped. They are going to check in with me every couple of weeks to see what it is that we are up to. I’m totally excited for this new little awareness outlet. I even rocked my red lipstick on air because we all know shit gets done when it’s a red lipstick kind of day. I’ll post a link when it goes up so you all can check it out. I hope I made you proud today, Ronan. I hope I make you proud everyday as making you proud is what I live to do.

It’s still pouring down here.  After a very productive pow wow lunch with your Poppy sister in tow, I’ve decided throughout this journey, adventure, or whatever you might call it, I am still learning some very hard lessons.  Lessons that are hard, lessons that are sad, lessons about how I need to be a little more protective of myself.  Lessons about how people at the end of the day, do not have my best interest at heart. I feel let down, but I realize I have to take the higher road with some things and just let them go. I have too much darkness in my life already, and I do not need to be dragged down more. As I was told today, “If people are taking away from this cause, and taking away from what you are doing, because of your DEAD child, those people do not need to be in your life. They have forgotten the true meaning behind this and are taking advantage of your situation. You have to just let all of this go, because at the end of the day, we are here because of your dead son and anybody that takes away from that, is not worthy of being a part of this story.” Wise words from a wise lovie whom I should have listened to a long time ago. I have enough weight to carry around with me and at the end of the day I have no more energy left to take on others issues.

It’s days like today that I am just so fucking over the petty once again, BULLSHIT. Your Sparkly called me a few months ago and left me a voicemail telling me about a little girl he had just met and said something like, “You are a hero, you helped to save her life.” I listened to him go on about how a little girl came into the hospital and as he was treating her, this little girl’s mother, got to talking to him. She mentioned my name and told your Sparkly thanks to me, her daughter may end up being o.k. Nela’s mom started reading my blog about two years ago. Nela’s story started off much like ours. It all started with an “off looking eye,” where the doctors told Nela’s mom it was just allergies and she was over reacting. Nela’s mom said thanks to us and our story, she pushed and trusted her mother’s intuition and insisted on an MRI. The MRI showed a mass behind Nela’s eye and it turned out, Nela did not just have allergies. She has been diagnosed with Rhabdomyosarcoma, but luckily, it has been caught early, at Stage 1. Nela’s mom and I have been cooresponding via email messages and just lately, through text messages. I’ve been trying to set aside some time to meet up with her and to meet Nela, but things around here have been beyond slammed. I was coming out of my friend Katie’s kids store the other day and loading Poppy into the car when I saw a mom from across the street, carrying a little girl and she didn’t have much hair. I, of course did a double take as I always do in these situations now. She looked at me and said, “Are you Maya?” I said that I was and she introduced herself and Nela to me. I was a little caught off guard, but in a happy way. I’ve been really wanting to meet this family for a while now. We chatted for a few minutes and I ended up saying, “What are you two up to now? Do you want to come over?” It was so spur of the moment but she had actually been trying to meet up with me on that day, anyway, so it worked out perfectly.

Our new friends came over for about 45 minutes. I watched as Nela ran all about our house. The little thing had so much energy and seemed so happy. I listened to her mom tell me their story as I held on to your Poppy sister. She kept telling me thank you over and over again, even though she said she knows how I don’t like to be told, thanks. I smiled and told her I was happy I could help and if they needed anything, to please let me know. I only teared up after I watched Nela’s mom plop a big, fat kiss on the top of her sweet baby girl’s head. It was at that moment, that my heart sunk a little bit. Moments like that are always bittersweet for me. I am so happy Nela is here and is going to be fine, but gosh, how I miss kissing that sweet little head of yours. And then my mind goes to where you are now, all ashes in an urn. No more bald head to kiss, no more blue eyes to look into, no more hands to hold because they are burnt to a crisp. Is that too morbid? It’s my reality, try living with that every single day. It’s a wonder I am still here.

After our friends left, it was breakdown city. I held your Poppy sister and cried and cried and cried. Your Sparkly ended up calling and I told him, as I was bawling, that I was having a sad day. “I’m sorry,” he said. I miss him, too. C’mon, you have survived sadder days, you are going to be o.k.” I told him I knew as I tried to pull myself together. It didn’t work. I let myself cry a lot for you the next couple of days. All while I continue to fight on and go non-stop because cancer doesn’t sleep so why should I?

Ronan. As you can see, I started this days ago. I am exhausted tonight and I finally had a great run with my friend, Katie, tonight to get some of this angry energy out. I am finally starting to feel like I can get back into a good running routine and I have missed it so much. Tomorrow, we shall inferno hike. Tonight, we sleep.

I miss you. I love you. I hope you are safe.

xoxo

 

Nela, you give me hope.

Nela, you give me hope.

A mushy messy update because too much has been going on.

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Ronan. At the moment, I am feeling defeated. And really lost, lonely, used, and sad. I look around in the world and all I see are these fake plastic smiles. People who pretend they care, but they don’t. People who say they do, but they don’t. And just when I am coming up to get some air, I get the most devastating news delivered to me, since your death. I don’t think this is my news to share as it hit a little too close to home. I don’t think I need permission to share what it is that is going on, but I’m not feeling right about sharing it on here at the moment. I need to talk to the people in my life that I am closest to about how to handle all of this since this is my very open and honest blog, and when I talk on here it is about what is impacting my life at this very moment. I’m just not quite sure how to handle this. At this point, I am beyond heartbroken, scared, and sad. My family has been through so much. We don’t need anymore pain, but we cannot seem to escape it. I’m just so tired of it all. I’m just so tired of being sad, mostly. I’m learning to rely on my old friends more and seem to be wanting to keep them as close as I possibly can. The ones who I can trust and the ones who won’t let me down. The ones who are my family.

Just when I think my days cannot get any worse as I am trying to absorb the news that I have been hit with, your baby sister looks at me and rolls over for the first time. She feels me with hope, happiness, and a light that nobody can destroy because no matter what happens, she is mine and I am hers. I look at her, take a deep breath, and watch her little eyes fill up with a love that I have not seen in such a very long time. Eyes full of innocence, light and love that know no pain. Her eyes remind me so much of yours. I spent the weekend in a fog but a productive fog like always. Basketball games, time with your brothers, family things. I was out and about with Poppy, running errands in the retched heat. A lady came up to me in a parking lot, telling me her sad story and asking if I would buy her food. She was telling me how hungry she was, how she had lost her house, her life, her everything. I loaded Poppy in the car, grabbed some cash out of my wallet and handed it to her, but I couldn’t even speak. She then said to me, “Bless you child, bless you.” I looked up at her, my eyes filled with tears and I wanted to scream, “But NOBODY is blessing me! My son is dead, and now I am dealing with x,y, and z!” I screamed those words over and over in my head instead of out loud while I drove away into the hot bursting sun that looked like it was going to explode.

This is the part where I say, I know I am blessed to have the things that I have Ronan such as your brothers and sister, of course. I never forget that. But, I think I am entitled on some days to scream that I am in fact not blessed at all because I’m still just so mad, sad, angry and hurt over your cancer, all you went through and that you ended up dying anyway. Some days I am not blessed because I am still too blinded by the never-ending torture cancer killed my baby and I just want you back. And just when I am feeling like all hope is lost, something amazing appears out of the blue, only to be sent by you.

So, I started this post a little over a week ago. I have decided not to go into much detail as to what is going on, as I want to be respectful to my family. Nobody is hurt as of now. My brother is struggling with some issues, but thanks to my mom and her never-ending dying love for her children, he is safe for now. It’s no secret that my brother and I have not had the closest relationship, but at the end of the day, I love him and his sweet soul. I am begging you, Ronan, to help him get through this. I spoke to my brother on the phone a couple of days ago. I begged my mom to make him talk to me. He was resisting. She held the phone up to his ear and I just simply said, “Hey. I love you. I am here for you no matter what.” He told me through is his tears that he knew this and he loved me, too. I then said, “I am proud of you and I know you can do this.” I hope he carries those words with him and all that is he about to go through. I hope most of all, Ronan, he carries you with him and remembers your big blue eyes and how strong and brave you always were. I hope he can channel a little of your strength so he can come out of this healed and ready to start his new life that I know he is so capable of. I am so thankful for my mom for so many reasons, but today I am thankful for her because she single handily has saved my brother’s life. It’s up to him now to do the rest and I just hope and pray that he comes out the other side of this, Ronan. I know you will help him through this the best you can.

So, after my pity party week of feeling super sad, lost and alone, of course something magical appears as it always does when I need it the most. Remember how I told you that amazing company SpiritHoods jumped on board when I asked them to make a Spicy Monkey Hood in honor of you? WOW. I had no idea what this was going to turn into, but Ronan, I think we just did something big. Something so very big that is going to help change this world of childhood cancer that everybody seems to just ignore. I got a very last-minute email from the founder of the company, Alexander. It said something like, “Hey, I’m in Vegas next week, can I come from there to meet you?” You know my rule about never saying no to things, right? I try not to anymore. Ever. So of course I said yes even with everything that I have going on. Plans were made, and as always, I was not sure what to expect, so I just hoped for the best.

Do you know those moments in life when for a spit second, everything just feels right? That’s what if felt like for me the second I finally got to wrap my arms around Alexander and his stunningly gorgeous wife, Shay. Alexander is the founder of SpirtHoods and Shay is his wife, side kick and partner in everything. The two of them, combined, are beyond magic. We spent some time getting to know one another, but honestly I knew from the second I met them, that I have somehow, somewhere, known them before. Or maybe you knew them, Ronan which is why I felt so close and so at ease with them. I’ve been holding some things back in regards to your death and saving them for just the right people, the right moment, and the right time to do something really amazing and powerful with. I have no doubt in my mind, Alexander and Shay are just the right people to share our everything with.

The Spicy Monkey SpiritHood that was only just a dream of mine, is coming true. With 100% of the proceeds, going back to your Foundation. I am so thankful and humbled to be partnered up with this amazing organization. But the SpirtHood is only the beginning. After we got to talking, an idea came about because Alexander believed we could really take this story, to the next level. So, we made a short film. And a long documentary, as well. One full of days and nights of real footage, B-roll footage, interviews from our dearest souls, not a lot of sleep, lots of tears, sadness, laughter, honesty, love, and what day is it today?! Ronan, it is going to be so powerful. I held NOTHING back with all the sadness, truth and pain that the world of childhood cancer is really about, but nobody wants to show.

Little man. I will finish this post and this story, but not tonight. I started this over a week ago but between all that has been going on, I have not had the time to finish. Book writing is #1 priority right now, after your sister and brothers, of course.

Poppy and I took the red-eye out to NYC a couple of days ago. We needed a break before September, so to the Hamptons we went to see our Fairy RoMo. I so needed this break. I so needed to clear my head. I so needed to spend some time with one of our favorites and your Poppy sister’s Godmama. It’s lovely here. Beyond words.

I need to get some sleep. Everything is fuzzy and hurts. I’ll finish the rest of this, tomorrow I hope. Just wanted to give you some sort of an update.

I miss you. I love you. I hope you are safe.

xoxo

 

Nothing like some hometown love to kick cancer’s ass

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Ronan. I don’t remember the last time I’ve written to you and I don’t like that. My days are so consumed with trying to be the best mama to your brothers and sister. This means no computer time, only a little time is spent posting the never ending cute little Poppy pics on Instagram as my way of trying to keep up with all of your lovies out there. They seem to be growing by the day and that makes me so proud. My nights have been spent writing and working on this book. My nights have been spent writing accompanied by hot flashes and puking over the toilet again due to living this fucked up “journey” over in my head again and writing it all out to tell our little story. Don’t get me wrong, I am grateful for the opportunity, but it’s still very difficult. I got through your diagnoses and I had no idea writing about that again would leave my head spinning in the way that it did. I can’t imagine what writing about your death will be like for me. This is the part where all you lovelies chime in on how brave I am. I don’t feel brave. I just feel like a mama who will do whatever it takes to continue fighting on for her child. Wouldn’t every mama walk to the end of the earth to make sure their child’s legacy lives on? To make sure good things continue to go on, because of their baby? I would like to think so. This is also just me, grabbing on to anything and everything I can, to still get to be your mama and parent you, Ronan. I don’t get to teach you all the things I dreamed of. I don’t get to scold you when you are being naughty… The only way I can get to you, is through these things that I am so desperately trying to do. Sometimes I feel like I’m grasping at thin air, sometimes I get tired and so very sad, but I have never in my life wanted to give up or quit. No matter how frustrated or sad I get because I know at the end of the day, you’re not coming back. And that is all I want more than anything in the world. But all the gratitude and good things will keep me going… I promise you that.

Today is an amazing example of good things that will keep me going. My little hometown showed some major RoLove today. I got asked to lead a 5k run that some girls I know wanted to throw together at our Lake Sacajawea. Of course I said yes and that is pretty much all I did. Everyone else buzzed about, working their butts off to make this “Run Like A Rockstar” 5k run, happened and it ran smoothly. All I did was try to get in a few runs before the big event so I could actually try to make it around the lake without having to be pushed in a wheel barrel. We had such an amazing turn out and I felt like I was floating in a sea of purple the entire day. I ran the lake as fast as I could with an injured knee from my previous running that I have been doing. I ended up walking a bit too but I was fine with that. One of my oldest friends, Laura was sweet enough to stay back with me so I didn’t have to walk alone. She talked about how she was so excited to run this but then pulling up to park and seeing your little face on the poster was just awful. How this was such an awful reason to have to run. I told her I knew. How surreal this all still seems to me. I know I used the word unfair through my tears. How could my baby be just fucking dead? How could my totally healthy, beautiful baby boy be so healthy, and then have fucking stage 4 cancer just like that? Through her tears she told me she was sorry, but how proud she was of all the things we are doing. I am proud, too Ronan. I know we are and will change this world in a very big way but FUCK. What I wouldn’t give to have just one more second with you. What I wouldn’t give to have my old life back. I can’t though. I know this but sometimes I like to close my eyes and just pretend.

I finished the lake and my knee actually felt o.k. My time sucked but today, I had nothing to prove at all. I was just happy to finish without injuring myself even more. You know who kicked ass in the race today, Ronan? Your brothers. I had no idea that I had little runners in our family! Liam has been going on some runs with me at night, but I had no idea he could run 3.6 miles in 30 minutes. Holy smokes I was blown away! Quinn came in just a few minutes after him. Liam ran pretty much the whole lake, by himself. This totally brings tears to my eyes because I know he did this for you, and how proud you are of him. I am so proud of them both not only today, but always. Such amazing little boys they are.

After the race I got a chance to meet some really lovely people who all love you so much. It was an emotional day but so rewarding as well. I am so grateful to everyone who came to support your foundation. Thank you to all of my rad hometown babes who worked so hard to get this all done. I know you are doing these things for the RIGHT reasons and nothing more than that. That is so important to me. Thank you for never forgetting my little guy who continues to inspire you daily. Thank you for keeping his mama going by showing me how much the power of love can move mountains. I am so proud to call you all my friends and I will never forget what you did for us not only today, but always. This is just the beginning. I cannot wait for next year and I am so proud to call this place, home.

Alright little man. I need to get in some hours working on this book. I talked to your Sparkly the other day. I miss him when we are away so much. He knows that I’ve been staying up late, working on this book and I listened to him as he said with urgency in his voice, that I need to get this done so I can “Fuck Cancer.” I know what the urgency meant. It meant that kids are dying, dying, dying and nobody is paying attention. I know he feels the same way that I do, that this book is not only our beautiful, tragic love story, but it is another way to spread awareness as well. I am doing the best I can, working as fast as I can, but I also know this cannot be rushed. All I can do is my best and I want to do this the right way, not the rushed way. I am just proud that I actually started it and I am making progress.

Alright little man. Back to the book. I miss you. I love you. I hope you are safe. G’nite, babydoll.

xoxo

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A Happy Birthday to your most amazing brothers.

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Ronan. Our little, Rachel went back to NYC this morning and I hated to see her go. We had the best time with her here and she is another one of those big reasons that I am so thankful for this blog. Without it, I may have never known this amazing soul who I’m sure was my little sister in a past life or something. Somehow or somewhere, we have crossed paths before. There is just no other way to explain the bond and connection we have. Never in my life have I met a more centered and beautiful 21-year-old in my life. Rachel is everything I hope Poppy grows up to be. She is brilliant beyond measures, mature, wise, compassionate, polite, sassy, hard working, loving, funny, strong, independent, adventurous, and truly knows how to stand her ground in this crazy world. I can’t wait to watch all she does in this life as I know she is going to change the world.

After I got home from taking her to the airport this morning I walked into your brothers room to find your daddy, Liam, Quinn, and Poppy. Your daddy goes, “Did you get Rachel off o.k?” I told him I did. He then goes, “That’s sad.” I said, “What’s sad?” He said, “I know you’re sad that she had to go. I wish she could have stayed longer, too. She was a great house guest.” I just smiled and said that it was o.k. Although in my mind I was wishing she could move in and stay with us forever. Your bed looked so much more happy with her in it. I’ll never forget the first time I met Rachel and I don’t really even remember how it came about except for she had been reading my blog and knew I was coming to New York City, alone to take a little time for myself. Somehow it turned into, “Want to meet up?” And of course I said yes because I just had a feeling about this girl. I am so glad I took a leap of faith and a chance and opened up my heart when it was so broken. My little, has helped me in ways she will never know. It’s people like Rachel that make living this life a little easier because she brings such beauty to it. Even though she may have tried to hide Poppy in her purse and take her to New York with her;) Don’t worry, little. We’ll come visit you soon. We are missing you so much already.

The 9th came and went. It was an o.k. day. We didn’t do anything dangerous. Instead Rach helped me get organized around the house. We cleaned out drawers, organized closets and dressers, we loved on Poppy and your brothers. We met up with Fernanda and Stacy for dinner where I got to sit and talk with my friends while Poppy slept away in their arms. It was a good way to spend the 9th. For once, I didn’t have the desire to jump out of an airplane without a parachute. Your brothers birthday was the next day. 10 years old, Ronan. I don’t even know how that happened. I woke up and made them a big breakfast before basketball camp. We opened up gifts and they were so excited, happy, and thankful. After camp we spent the rest of the day playing with Fernanda and her kids for the majority of the day. I broke down about halfway through the day as I had done all I could do. I tried my best to be the strong and happy mom for most of the day but there came a point when I couldn’t stomach the fact that you were not here with us to celebrate and the tears just started pouring. There was no controlling them so I just let them fall. I was back in Fernanda’s bedroom with one of her boys who is so in love with Poppy that he just wanted to hold her all day long. I was sitting quietly with him and we were whispering back and forth to each other about Poppy. There was something about seeing him holding her and the way he was looking at her that reminded me so much of you. I think it was the look in his eyes as they were filled with so much love, happiness, and peace. It’s the way I know you would have stared at her, too. Brando kills me anyway as I totally have such a soft spot for that kid. He is only a couple of years older than you. Right after you died, I remember being at Fernanda’s house and I was back in the boys’ room. Brando just looked at me and said, “I’m sorry about Ronan.” I was speechless as I think he was only about 6 when this happened and I remember thinking to myself, “I don’t care how little this boy is, he gets it.” I’ll never forget that moment with him and how much it meant to me. I’m a sucker for all of her kids, but Brando always seems to tug at my heart just a little more. While I was crying on the bed with Brando and Poppy, Brando looked at me and said, “Are you o.k.?” I just nodded my head that I was, even though I really was not. I tried to stop the tears, but it didn’t work and Rach and Fernanda came into the room to find me silently sobbing. My tears lasted a majority of the day. I just wanted  you with us, running about the way you should have been with your big brothers on their 10th birthday.

We ended the night with messy, messy, ice cream cake, singing Happy Birthday and lighting off fireworks that we acted like weren’t supposed to be lit off. As we were jumping and dancing about I heard our little Rachel yell to Quinn, “Rules were meant to be broken, Quinny!” I laughed out loud. Indeed they are, little which is another reason I love you so much. Ronan, you would have loved the boys’ birthday so much. I hope you were there watching us and cracking up at the things we did and you could see even through my tears, I can smile and laugh, too. The night ended by tucking our little in as I sat with her and talked about life, love, loss, and the people we choose to surround ourselves with. I told her how I’ve learned some lessons along the way about the people that have floated in and out of my life. How you, Ronan, are the root of all things good, beautiful, and pure and as long as I remember that I think I will be able to continue to do things that will make you proud. I’m not here to deal with drama. I’m not here to deal with BS. I’m going to live this life the way I want to live it, not the way other people think I should. At one point I was talking to Rach about Stacy and I was telling her how we met, how long we’ve known each other, how we lost touch after our husbands graduated law school together and how we had made plans to meet up after a few years had passed and how we were supposed to go to dinner on the night you were diagnosed. I tole Rach from that moment on, how Stace swooped in and her and Fernanda took charge of everything. How we may have had our bumps along the way, but at the end of the day I always know Stacy never forgets why it is she is here, doing what she is doing. She never forgets this is all for you and because of you. Screw me. I’ll say screw me all day long as I’m not the one who matters in all of this. It’s you. I get told a lot how strong I am, how inspirational, etc… You know what I say to all of that? I’m not any of those things, but you are Ronan. I am just simply here, trying to make you proud by doing the things I know you would want done. You were the strong one. You were the brave one. I was just simply lucky enough to be your mom.

After my pow wow with Rachel, I went to kiss your brothers good night. Quinn wanted to snuggle Poppy so we got into bed with him. We all said our goodnights. I told your brothers how lucky I am to have them and how I hope they know how much I love them and am proud of them. This is what Quinn said. “Goodnight mom, Goodnight Liam, Goodnight Poppy, Goodnight Ro. I love you. I wish you were here.”

Always, Ronan. We always wish you were here.

I love you, baby doll. I miss you. I love you. I hope you are safe.

xoxo

P.S. Thank you to all of you who reached out to me about the cable for The Ronald McDonald House. We’ve got some amazing people helping us out and I am crossing my fingers that something can be done. I know it may seem like such a silly thing to some because we are lucky enough to have the basic things in this world like clean water, food, etc… But trust me, when your child is neutropenic and cannot do a thing except watch Mickey Mouse Club House and the parents are so beat down from all they are going through, a little thing like that can really help one get through the day. Again, thank you all. You truly are angels on this earth.

 

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“This is how dreams die.” -Woody Thompson

 

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I’m not going to go into why I titled this post this way tonight because not everything can be shared. Let’s just say Woody came home and said this to me tonight for a very good reason. All I am allowed to say is screw anybody that sets out to get rich off of kids with cancer. Fucking unreal.

 

Ronan. I cannot believe your baby sister has been here for 3 weeks today. It has went by so quickly. We still have been lying pretty low and I swear it feels like I have been doing nothing but nesting and breastfeeding her since she arrived. The quiet has been good for me. Or at least that is what I am telling myself for the time being. I do miss my crazy insane I’m losing my mind days. Those days got me through a lot of the darkness. I’m sure those days are not over yet… but for now I am just trying to soak in the peacefulness that you sister has brought into our lives. We’ve had a couple of out-of-town visitors. Your Nana came to help out with things and to meet Poppy. It was of course wonderful to have her here as it gave me a chance to do nothing but focus on your sister and let myself become somewhat human again. I was exhausted not from the lack of sleep I’ve been getting, but from the physical part of your sisters birth and the toll it took on my body. Now I am starting to feel somewhat normal again and I know a big part of it is due to the rest I was able to get with your Nana in town. She took a lot of the slack off and for one full week I didn’t have to touch the laundry or cook a thing. It was heaven and so very helpful.

Your Fairy RoMo popped into town just for a day to come and see her new god-daughter. That was a magical day indeed and so special that I can hardly put it into words what it was like to see the two of them finally meet. It was like for once, something in this world without you made sense for  a split second. If I can’t have you here to meet your Fairy RoMo, having Poppy here is the next best thing. We took Poppy all over with us for the day. We had a impromptu Poppy party that was thrown together by Stacy where we sat around at a cute little restaurant and had a nice lunch. It was pretty much her first time out in the world. After that, we took Poppy to your favorite restaurant, Chelsea’s Kitchen. We sat on the patio and went gagaga goo goo crazy eyes over your sister. As I was sitting there, I was taken back to the night of your funeral/celebration of life/one of the worst nights of my life. I was holding your sister and I remembered being there after we had your services. I thought to myself, how in the world could I have come here with a bunch of people the night of Ronan’s funeral? In my white dress looking like a zombie I’m sure. I hardly remember the night except I remember that somebody went and snapped my picture with Quinn on my lap and I remember smiling into the camera. How I even was able to form a smile is beyond me. I know I did it because Quinn was right there and I was trying to act somewhat normal like this is a fucking normal thing to do. Eating Tuna Tacos with a bunch of people after my child had just died and I sat in the front row listening to people talk about about you, holding your brothers hands, without tears streaming down my cheeks because I was too numb to feel anything. And now, here I am, sitting right back at that very same restaurant while holding your sister and kissing her sweet cheeks. How is this my reality again? I wanted to vomit right there on the spot but I just sat there quietly instead doing everything I could do in my power not to cry and hide underneath the table. I let the scene of that awful night play out in my head instead.

Every time I think about you and what has happened lately it’s like my mind is back to not being able to process it. My mind automatically goes to screaming, “FUUUUUUCCCCCKKKKK!!!!” in my head and that’s about it. Sometimes I cry. Sometimes I don’t. I always feel like I’ve been punched in the gut. I took your brothers back to their therapist last week just to check in with them. Quinn did not understand why he had to go because as he told your Nana, “If I needed to talk about something, I would just talk to my mom.” That was sweet to hear and made me feel good, but I still wanted Quinn to check in with Dr. Rachel. I went to talk to her after she met with Quinn. She said that he is doing really well. That the worry brain he used to have, seems to totally be gone. He also told her that he hasn’t seen me this happy in a long time. That stung a little bit. Happy? How can that be? It almost felt like a betrayal to you, Ronan. Don’t get me wrong, I do want your brothers to see  me this way. This is the way they deserve their mom to be… but it still felt weird to hear that. I just wasn’t ready for that word quite yet. It was like swallowing a really big horse pill and doing everything I could, not to choke on it. Dr. Rachel told me she feels like she does not need to see Quinn anymore, even though she would love to because she thinks he is such an amazing little guy, it’s not necessary at this point. Liam on the other hand, still needs some time with her. He is still pretty emotional about all of this. He tends to keep things to himself more so than Quinn does. We talked about making sure she gets some time with him before the shit storm of May 9th and all the lovely dates after, follow.

Your brothers are of course so in love with your sister. It is so strange to watch them with her, thinking they were doing the exact same thing with you after you were born and how you are just gone now. They both fight over who gets to hold her, kiss on her, and love on her. They both say the funniest things about her. The other day I had an outfit on her that was too big because she is so tiny that much of the stuff I have for her is big. The little tank top she had on kept sliding down and Quinn goes, “Mom, why isn’t she wearing a bra? People are going to see her privates.” I almost peed my pants over that one. The innocence at 9 years old melts my heart like crazy. They both can’t get over the fact that she doesn’t have teeth and Liam sits there with her and tries to teach her to talk. He’ll go over and over, “My name is Liam. L-I-A-M. You’re name is Poppy. P-O-P-P-Y.” It is the cutest thing ever. I’m sure if you were here you would be doing things like coloring on her with markers while I had my back turned or taking her hair and putting tooth paste in it or cutting it with scissors. You were always causing trouble in the best way possible.

Your daddy has been doing things with Poppy like playing her guitar. The other night I was sitting in bed with your sister listening to your daddy play to her. I said, “You need to learn a Taylor song for her.” He asked me which one and said, “Not Ronan. I love it, but I don’t think I can get through that one just quite yet.” I agreed with him and immediately went to one of my absolute favorite song of hers. That one from The Hunger Games soundtrack, “Safe and Sound.” Fast forward a week later and your daddy has that song down to a tee. I remember where I was the first time I heard it on the radio. We were in Maine for the 1 year anniversary of your death. Your daddy and brothers ran into a restaurant to pick up pizza and I was sitting in the car alone. That song came on and I started bawling like a baby. I thought it was so beautiful and could not understand how I had not heard it before. I sat there thinking how much I would have loved to sing this song to you as the words resonated with me so much. Now here we are and your baby sister will grow up with your daddy singing this song to her. Once again, the next best thing to actually having you physically here with us.

Our visitors have still been far and few. Your Sparkly came by last week for a bit just to check in. I showed him your room and how different it is now. I think it was hard for him to see, but he said it looked beautiful. It was hard for me to show him. After that, we mainly just sat on our couch and stared at your sister while catching up on some things. Sometimes a lot of words are not necessary. As we were sitting on our couch he asked where your Nana was. She had gone out to run some errands for me so she was not home and I told him how she has a hard time sitting still. He goes, “Now I know where you get it from.” I just smiled at that. He then goes, “Where is your mom sleeping? In Ronan’s room?” I paused for a minute and told him yes. You see this Ronan? This is why Sparkly gets it when not many other people do. Those 3 words, “in Ronan’s room,” meant so much to me. Sometimes the littlest things mean the most and that is a prime example. Sparkly quietly said how he can’t believe how much she looks like you. Cue tears here. End scene with them sloppily falling everywhere as I said I knew. That dimple. I still cannot get over it.

That’s my update for today. I’ve started hiking/running again. I know I’m supposed to wait 6 weeks postpartum, but they don’t call me a rebel for nothing, right little man? The exercise feels good. Today has been a little tough for a couple of different reasons, but mostly just because I seem to be missing you more than ever. Throw May on top of all of that and it’s a wonder I can even leave the house and function like a normal person at this point. I’m going to go for a run to blow off some of this never ending pain. I miss you. I love you. I hope you are safe. F U Cancer.

xoxo

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2 years ago today, I went to Hell

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Ronan. 2 years ago today, April 23rd, I went to Hell. I’ve been to Hell a few times in my life and it’s not the place that people think you go after you die and you have lived a life of sin. Hell to me is right here on earth. Hell to me are the things I have experienced while living; half alive. April 23, 2011, I went to Hell. It was your last scan day at Sloan Kettering. Fernanda was with me. I remember every detail about that day as if it had just happened yesterday. The waiting in the waiting room for Dr. Kusher to come out and read us your results. Watching my friend, Doriet, howl like an animal in that same waiting room as she had just been given the news that there was nothing left to do for her daughter, Esther. Grabbing Doriet as she walked by and squeezing her so tightly as I whispered in her ear that we would find something or someone to help. Looking at Fernanda and saying to her, “They have to walk out of here having just being given the news that there is nothing left to do for their daughter. How are they going to leave here? How can that just be it?” I had no clue that 20 minutes later I would be in the exact same situation.

Fernanda and I sat and waited. Dr. Kushner came bursting through the doors, breezing right past us. Fernanda whispered to me, “There he is! Ask him!” I watched his body movements, the way he avoided eye contact with me and rushed right past me as if he didn’t see me waiting there. I knew he did. My stomach dropped to the floor. My name was called to come back and get you as you were waking up from your anesthesia. I couldn’t wait to scoop you back up into my arms, safe and sound. You were groggy, but so happy to see me. You were upset about the bone aspirations in both of your little hip bones asking me why I let them do that to you. I rocked you out back out in the waiting room to try to calm you down. Then the sign of all signs that everything was about to come crashing down. That damn necklace. My “lucky,” necklace that I had worn religiously on every single scan day, broke in two and went falling on the floor. I watched the necklace fall to the floor in slow motion. I swear time stopped. “Dr. Kushner will see you now!” we were told. I grabbed you, Fernanda followed me, and off we went. I felt like I was walking the plank of a pirate ship with a big sword in my back, waiting to be dumped into a sea of blood hungry sharks.

Dr. Kushner was waiting to see us alright, but not in the way that I wanted. He paced back and forth like a caged animal. He couldn’t or wouldn’t look me in the eyes. “The treatment. The treatment didn’t work.” I sat there, shaking, as you played on the floor with some cars or something. I don’t remember much after this except saying to him, “O.k. well, I know you have a plan, because you said you wouldn’t give up on my child, so I’m going to go back to Phoenix, until you figure out what is next.” He called your daddy too at some point. I don’t remember what was said. I remember feeling like my legs were cement and I couldn’t get up off of the chair. Somehow I managed. I also managed to give that Dr. Kusher a hug and say “Thank you. You are a good man.” I said this to a man who was too much of a coward to give me the decency of looking me in the eyes and just simply telling me he was sorry. I picked you up and off we went, somehow managing to make it back to the Ronald McDonald House to pack up our entire life that we had created in a matter of hours to hop on the soonest fight out of there. I did none of this. I threw Coconut Water at the wall and watched it explode everywhere and I told you we were having a Pop throwing party as I sat on the floor with you and Fernanda and we let all kinds of soda and water explode everywhere as we threw it against the wall and all over the floor. You thought this was funny. I did too as I lost a piece of my mind that day, never to get it back again and I honestly don’t miss it at all.

I sat a the basement somewhere while Fernanda stayed with you and let you chase her about. I screamed and cried into the phone to our Mr. Sparkly Eyes. He could barely talk as he know nothing was going to calm me down. I remember him just begging me to get it together, so I could get you home and he promised me we would go from there. I think I said the words, “No,no,no,no,no,no,” over and over again as I could not even form a sentence at this point. Valium somehow came into play I think. The next thing I knew our 10 suitcases that came out of thin air were packed and we somehow managed to get a late night flight out of New York home to Phoenix. Again, not me. That would be the magic of Fernanda. Only she could somehow manage to orchestrate something of that magnitude in the middle of the biggest shit storm of both of our lives. Somehow we survived scan day from Hell to be plopped back to Phoenix. I remember nothing after this. I don’t remember the reunion with your daddy and how the fuck that conversation went. I don’t remember getting home to our house and explaining to your brothers what was happening. It’s as if my memory of the next few days has been erased. I guess that happens when you suffer from something as traumatic as what had just happened in New York. Part of the PTSD I suppose.

Fast forward and here I am 2 years later having survived one of my many trips to Hell and back. Here I am having spent all day today, thinking about you and what I was doing 2 years ago as I was still fighting with everything I had, to save you. Today, I spent much of the day like I have been since your sister was born. Rocking her. Snuggling her. Feeding her. Taking care of her. Listening to my head as it screams for you, but the screaming is a little less now that she is here. Wondering if your sister is you, reincarnated. Is that a real thing? I don’t know, but it crosses my mind. What if it were. How would I feel about that, if it were? Would it make this pain, any less? I don’t know. It’s because of that dimple of hers that I can’t stop thinking of this. That secret dimple that you had on the right side of your face down by your chin. The tiny little dimple that only showed up when you smiled. I think that she has it too and it is freaking me out and making my mind think insane things like, “What if this is Ronan’s way of coming back to me because he saw how much pain I was in and he couldn’t take it anymore so he came back as a baby girl…” You know me and my imagination… wild and crazy. Then there is the other little voice in my head saying, “Don’t be crazy. This is Poppy not Ronan, but she is here to save you too, but in her very own way. Her magical, special, Poppy way.” Whatever the real answer is, Ronan, I’ll take it. Because either way is a gift from you. I know this.

Your Nana is here and it has been wonderful. She is so helpful to me and I love watching her bond with your sister. She is such a good Nana. It is all bittersweet, but I know you would want it this way. You would want us to be happy as much as we are able to, without you here. Tomorrow, your Fairy RoMo is popping into town, just to take a peek at your sister and meet her god-daughter. I am so beyond excited to see her and introduce the two of them. I know it will be love at first sight. I only wished she could have met you as well. Tomorrow, I feel like she will be meeting a piece of you and it is going to be such a beautiful thing to see. Your little sister is one lucky girl to have a Godmother like her as she truly is one in a million.

Alright little man. I’m sorry I haven’t been writing, but things have been busy, yet calm. We are all truly just soaking in this little window of time with your sister as I know how fast the newborn stage goes by. She is a dream and is such a good baby. We are all amazed at how she doesn’t cry. Ever. She is the most peaceful little thing. I guess somebody must have told her how badly we were all needing a little peace in our lives. Thanks, baby doll. I miss you. I love you. I hope you are safe. Sweet dreams

xoxo

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That beautiful day your sister was born

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Ronan. I know I’m supposed to sleep when your Poppy sister sleeps, but even early in these morning hours, I just can’t seem to do so. It doesn’t matter the lack of sleep I’m getting due to breast-feeding her, holding her, or obsessively watching her sleep because I’m scared she’s just going to up and stop breathing. I think at this point I’m just running off adrenalin and that’s o.k. Sleep stopped being my friend a long time ago.

So, do you want to hear the story about the day your sister was born? I know you already know it, but I’ll recap it for those who don’t. The last few weeks of my pregnancy I was miserable. Miserable in a way that I found myself begging day after day for your sister to finally get here. You know I’m not a good pregnant person at all and those last few weeks, I was beyond done both mentally and physically. Dr. Schwartz was well aware of this too which is why I got her to agree to strip my membranes to try to jump start my labor the same way she did with me for you. I went into her office on a Tuesday and she did this for me to try to get things rolling. It didn’t work. I went back to her on Thursday and once again she stripped away and I left her office hoping that your baby sister would make her entrance into the world soon; just like the way you did after I had this done. I ended up going to the hospital due to having some bleeding and pretty bad contractions had started up as well. I thought it was going to be go time, but as the night went on, the contractions stopped. I had to stay the night at the hospital so they could monitor me, but I was released the very next day. As you can imagine, I was out of my mind upset. I may be a patient person about most things in life, but the end of a pregnancy is not one of them. I also had myself convinced that Poppy was for sure going to be born dead or was never going to come out at all because clearly I had made her up in my deranged head. Once home I pretty much stayed in bed the entire weekend, not wanting to talk to or see anyone. If there was ever a time that I was “depressed,” in my life, you could say the last few week of pregnancy were it for me.

On Sunday night around 10 p.m. just as your daddy came to bed to go to sleep, I was huffing and puffing about how miserable I was and how I hated the world so I got up to do my late night laundry that I have become accustomed to. Just as I was cursing the pregnancy gods from above, I noticed a little drip, drip, drip running down my legs. I walked down the hallway and the puddle continued to slowly trickle out of me. I went in to our bedroom and said to your daddy, “I think my water just broke.” He jumped out of bed all panicked and told me to grab my stuff so we could rush to the hospital. I told him, “No way. I have to shower first. This could take forever and I’m not bringing Poppy into this world until I shower and shave my legs.” I calmly got showered, dressed, and off to the hospital we went. We were admitted right away and Dr. Schwartz was called. She ordered the hospital to start pitocin for me to get things to progress and little faster as I was still only about 4 cm dilated. By this time it was about midnight and I geared up for the night while your daddy quietly slept away on the couch. My contractions started to get pretty bad and the epidural could not have come soon enough. I could not get a hold of Dr. JoRo who was back up in Sedona as she had been with me in the hospital all of Thursday night but went home after I was released. My doula, your daddy, was just not cutting it as I screamed at him about the pain/having to feed myself ice chips because he was so tired that he could not stay up. Luckily, I had a really great nurse who helped me through everything while your daddy got his beauty sleep to prepare for the big day. Apparently labor is hard work when you are a dude ;) I was really proud of the self control I contained as it took everything I had not to throw ice chips at your Daddy’s head while he slept away and I sat there cursing away from the pain of the contractions that were getting stronger and closer together.

It was around 5:15 a.m. that I started to push your sister out. I had your blanket on my chest and did my best to remain calm as I said your name over and over in my head. 3 pushes was all it took and your baby sister was plopped in my arms immediately. I was overcome with so many emotions that is was almost as if I couldn’t feel a thing. I just remember staring at her and whispering, “Thank you, Ronan,” in her little ear. She looked up at me with her big wide eyes that I can tell are already full of so much wisdom. Your sister was born at 5:35 a.m., 6 lbs 11 oz, tons of dark hair and oh so perfect in every way. She had one little cry as she entered this world but that is pretty much the only peep she has made. I’ve never seen a more calm or peaceful baby in my life. I spent the next few hours staring at her and in disbelief of how much she looks like you. Your daddy and I cannot get over it. I think I went 48 hours without any sleep at all. My adrenaline was through the roof all I could seem to do was stare at your little sister as I slowly let myself fall in love with her. I needed some time to process everything and needed some time to bond with this new baby girl as you know how bittersweet this is for all of us.

Dr. JoRo arrived at the hospital around 10 a.m. and stayed for much of the day. She left once your brothers arrived to let us have some private time together as a family. It hurt to see your brothers walk through that door without you but it was also such a beautiful moment, too. They were so excited and proud to meet their new baby sister. I think they were also both relieved to see that she was finally here, safe and sound. We kept visitors to a minimum just the way I said we would. I needed everything to be calm and quiet not only for me, but for Poppy as well. As the day went on, I sat and watched out our window as an unexpected rain storm took over the entire valley. It was one that was not predicted but rather it came out of nowhere. I know you are always with me, Ro but this storm on the day your Poppy sister was born just proves it to me even more. It was such an amazing thing to witness like it was our own little secret. You are such a little spicy monkey boy and I spent much of the day smiling as I watched the rain pour down out of nowhere.

Our Mr. Sparkly Eyes came by both days that I was at the hospital. The first day he just popped in to take a peek at his new goddaughter and the second day he came for a little longer to sit with me and check in with me to see how I was doing/handling all of this. He told me how I was such a natural at being a mom. I smiled and told him I knew, that this was the easy part for me. I told him how proud you would be to have him as the godfather of your baby sister and how I knew that you would have picked him and only him for this as he is the only one special enough to do so. He will be the best at watching over your baby sister for me just like the way he helped to watch over you whenever he could do so. I know you would be so happy about this. I am so honored to have him play this role in your sister’s life. It makes all of this that much more special.

We were released from the hospital 24 hours later and it took us this long to decide on your sister’s name. We had originally planned on naming her Ireland Ronan, which I am still so in love with but for some reason, it just didn’t feel right anymore. Your daddy and I went back and fourth about her name, forever. I just could not part with Poppy. I didn’t want it to be a nickname or an afterthought. It had come to mean too much to me to just let it go. Your daddy threw in a few curveballs and suggested some names like Sophia and Alexandria, both of which I love, but this baby has been Poppy since she was 5 weeks in the womb. Nothing else felt right. Your daddy and I sealed the deal with Poppy Ronan with a kiss on the lips and a smile in our hearts. I know her name would be Ronan approved. I think you would have loved it so very much. It makes me smile and it makes me happy. Poppy Ronan Thompson sounds like the sweetest thing ever and it just seems to fit her little face.

We have been home now and are all doing just fine. I didn’t spiral into that postpartum depression like everybody was freaking out about and worrying that I would. I have been a little quiet and have not seen too many people but that is not due to depression. It’s just due to the four of us trying to enjoy our quiet time with your sister and soak this all in. I’ve been staying at home with her and just trying to let myself bond with her the way that I need to. I wondered how this was all going to feel… having a new little life around to take care of. I wondered if that hole in my heart would disappear due to your Poppy sister being born. I have come to find out this is not the case and will never be the case. I feel like my heart has grown and gotten bigger, but the hole there will always remain. Nobody can fill it as it’s not meant to be filled. It is there to remind me every single day of how much I love you, how much I will always love you, and how much this will forever hurt as your absence in this world is the most painful thing that I have ever felt. This hole in my heart will remain there for the rest of my life. The birth of your sister has proven this. If she can’t fix this, it was not meant to be fixed no matter how much love I feel in this life without you here. I will live with this hole in my heart for the rest of my life and I can be o.k. with this. I am learning to be o.k. living like this. It makes me stronger and makes me work harder at everything I do. I will let my pain do great things in this life to make you proud.

Alright my little man. I am going to go. Thank you from the bottom of my heart for your beautiful sister. Thank you for getting her here safe and sound. I promise to be the best mama in the world to her and teach her all about you. I can’t wait to learn from her the things I know you have already taught her. You are the best big brother in the world. We all love and miss you so much. I’m so sorry that you are not here with us. I miss you. I love you. I hope you are safe. Sweet dreams, baby doll.

xoxo

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  • Instagram is my BFF

    #Repost from @jentate with @repostapp
Oldies but goodies. Seeing these shirts on my RoLovies makes me sooooo happy. @palmercash #ronan #fucancer #rockstarronan #palmercash 💜 came home to thissss!!!! @palmercash #awesome #ronan #rolove now my hubs can rock the #rolove !!! This is the "I want to fucking kill myself selfie." Camelback Inferno hike today is extra hot. WTF was I thinking? Oh, I know. My son died from fucking cancer so I get to live my life being insane and doing crazy shit like this because sometimes it's the only thing that makes me feel alive. Thanks, cancer. You are an asshole. #ronan #fucancer #camelbackmountain #infernohiking #iwanttofuckingkillmyselfselfie #thatwasajoke #nobodyneedstofreakout Battle of the Blogs ends at 11:59PM MST TONIGHT! Those last few hours are invaluable, so please continue to vote as often as you can. 💜

Thank you for your love, your support, your kindness, and your belief in Maya & Ronan, and how they're changing the world. Link is on FB & Twitter!
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