Wait… Poppy is one? How did that happen already??

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Ronan. I don’t live in a normal world anymore. I live in a world that I often feel very alone in, but I tend to do alright in this world. This world without you is so hard for me to live in, but I have done my best to make it bearable by living each day as fully as I am capable of because I know how precious each day truly is. You might say this new perspective has given me a clarity I never had before and I myself as a human being generally feel pretty fulfilled; minus the always absence of you in my life. I keep you tucked away as close to me as possible and carry you with me in everything I do which seems to get me through the toughest of times.

I was at lunch the other day and ending up sitting next to a table full of mom’s who were doing PTO stuff for their kids’ school. I knew a few of them so of course I waved, but I really wanted to just curl up and cry. I glanced their way every so often and could hear them talking so excitedly about the money they had raised and the upcoming fundraiser they were putting together. What it must be like to be able to live that life of a normal, no cancer has ever touched their kids, PTO mom. My mind wandered back and forth between “I wonder if this is what my life would have been like if cancer had not killed my baby” to “Please let Nela beat this cancer once again, Ronan, as her mom just told me she has relapsed.” You see, even when I try to do normal not cancer mom things, it’s almost impossible for my mind to just let go of the swirling thoughts I have about you, you getting cancer, you dying, all the other kids that I know are being diagnosed, the ones who are not doing well, etc… I have come to accept the fact that I cannot do it all and I’m just no longer cut out to be the PTO mom because that life as I maybe would have known it, flew out the window a long time ago and I don’t see it coming back anytime soon.

I have a 23-year-old best friend. A 37-year-old best friend. And a 68-year-old best friend. The three of them all entered my life because of you. My relationships with them are each so different, so unique and so special. Not only do we have one common denominator in our lives, which is you; but we also have another one which is this fucked up world of childhood cancer. My 23-year-old best friend sleeps in your bed a lot. She pretty much should just move in with us at this point and if I did indeed have a guest house, I would totally let her live in it. We do a lot of silly things together which mostly consists of drinking too many Kale drinks in one day and having ridiculous dance parties to really bad rap music with Poppy. We also do a lot of quiet things together, too. We hike a lot while we ponder stupid things like, “If you could come back as a boy or a girl in your next life, what would you be?” We do a lot of intense things like cry on the phone and kick and scream and cuss about things that are so fucked up but are not my things to talk about on here. She sends me poetry in the middle of the night or things she is reading out of books and I do the same for her if something really strikes me as so painfully beautiful, that only she would understand. I am watching her in the world as she walks through it and I swear sometimes I see you holding her hand. She is all things magic and beauty and makes my heart sometimes skip a beat. I thank you for her every night in my head. She is my little renege side kick in life and I am so lucky to have found her, because of you.

I also have your New York Miss Macy who you actually did know and love to pieces. She is my sounding board for everything in life and the one I probably cry the most to. She is also the one I laugh with the most. Without Macy, I’m not sure where I would be in this life without you, but I’m pretty sure it wouldn’t be in the place I am now. She keeps me grounded and reminds me that it is o.k. to be sad with someone other then myself. She is flying in this weekend to celebrate your Poppy sister and also because I got us kick ass tickets to the Lana Del Rae concert who is my musical soul mate in life. I cannot wait to have her here and I know Poppy is so excited about seeing her other mom:)

Last but not least is your Sparkly who I can say without a doubt, saved my life. I could write a novel about him but I’ll just talk about yesterday instead. Yesterday was Poppy’s birthday. Her first birthday. Can you believe that, Ronan? I don’t know how she is one already. I wasn’t sure how I was going to be feeling yesterday, so I didn’t make any big plans. I woke up to the sweetest messages from so many people wishing her a Happy Birthday which was so nice, so thank you all. We had a quiet morning at the house just the two of us and ran down to see your Sparkly so he could see his god-daughter on her special day. We brought him a coffee, just like you used to always want to do for him. We sat and talked while your Poppy sister crawled around between the two of us while I opened up the little gift and card he got for her. I was trying my hardest not to cry and I know he could tell I was getting sad.

“Are you going to be o.k. today?” he asked me while I did my best to look him in the eyes as I answered his question.

“Yeah. I’ll be o.k. I just wish Ronan could be here.”

He responded with, “I know you do. I do, too. I’m sorry he’s not, but today is her day and I know he would want her to be celebrated the way she deserves to be, so please go and do that for her.”

Your Sparkly has such a way of being able to recognize my sadness, but can also put things into perspective for me in a way that doesn’t piss me off. He’s is pretty much the only one in my life that is capable of doing that.

I told him I would celebrate your sister and so of course I kept my word.  Of course Poppy should be celebrated, but I live in this world where the most beautiful things are also so very bittersweet.  I had to sing your sister Happy Birthday last night and you were not there to do something naughty like smash her cupcake all over the floor.  I just don’t think I’ll ever get used to that or I won’t ever be sad about that, but I could not let my sadness take away from her day at all.  That would not have been fair to her and I know it’s not what you would have wanted.

I ran and picked up Brianna from ASU. We took Poppy to Toys R Us to get her some gifts. I got home and wanted so badly to just throw in the towel and order a pizza instead of cooking the spaghetti dinner that Quinn had requested. I kept hearing your Sparkly’s words in my head. I cooked dinner and we spent the evening outside playing basketball and watching Poppy have a dance party because that is her favorite thing to do in life. Kassie and Brianna stayed the night and we gathered around to sing your sister while a purple star balloon floated behind her, just to remind us all that you are always here. Always. It was a very sweet and simple day as that is all I think any of us could handle.

Today is 35 months without you and today was not a good day at all. I cried a lot. Your daddy cried a lot. I felt extra lost without you today and I don’t know how next month is our hell month of May already and 3 years since you’ve been gone as well as your 7th birthday. God, what I would give to see you as the beautiful 7-year-old that I know you would be. We are going away for May because being in Arizona is never a place that I want to be on the day you died and your birthday. We all need a little time out together so we are going to the Hamptons for a bit where we will see some dear friends, but also be together as a family.

I have to say goodnight now, Ro baby. I’m tired and need to try to get some sleep as I am beyond ready for today to be over.

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

xoxo

 

 

Thank you for her.  She is such a gift to us all.  Happy 1st Birthday, Poppy Roo. We love you, Ronan.

Thank you for her. She is such a gift to us all. Happy 1st Birthday, Poppy Roo. We love you, Ronan.

 

 

Taylor, you will forever have my heart. Thank you for continuing to be such a voice for these kids. I love you.

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http://www.huffingtonpost.com/2014/03/24/taylor-swift-visits-cancer-patients_n_5021039.html

I wish I didn’t know what it was like to only be able to kiss your face through the pictures on my iPhone. I miss you. I hate this.

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Ronan. Every year since you left when Mr. Sparkly Eyes’ birthday rolls around, I always give him a card that I’ve made for him through my iPhoto with a picture of you on it. A few nights ago I was at my office working on my book, but I needed to take a little time out so I started to go through my pictures of you to make his card. It’s never an easy thing for me to do, but I feel like it would be important to you, so I carefully pick out a picture that reminds me of how happy you were while you were here on this earth. I usually just write really some simple words and I always sign it from the both of us. Ring, ring went my phone as I was doing this little project and I saw the word “Lover” popped up on my screen which is really Macy. Of course I picked up because I always do when she calls. She started chatting away about something and as I listened, I buried my head in my hands. I went to answer the question she had asked me, but she knew from the tone in my voice that something was wrong.

“Oh babe. What’s going on?”

“Nothing. Everything. I’m sitting here trying to make Mr. Sparkly Eyes’ birthday card and is it weird that I’m putting another picture of my dead kid on it like I do every year for him? I’m going through these pictures and I cannot believe he’s not here with me to give him this birthday card himself.” Insert more sobbing here.

I listened as Macy told me that it was not weird at all and we continued to chat for another half an hour or so until I stopped crying. She ended up making me laugh after she listened to my blabbing away and crying while she did her best to talk me through what it was that I was feeling at that moment. I didn’t finish the card that night, but ended up finishing it a few days ago instead. I have learned when something just isn’t feeling right, not to force it and I knew if I forced your card, it was going to be crap. I take my card making very seriously, especially when you are involved. I got the card in the mail the other day and of course, it is perfection and I know it will make him smile as I tell him the story behind that little picture of you and your happy face.

Things here are still really busy and there is not a lot of down time between Poppy and your brothers. I am trying my best to keep my head above water and have been making sure I get some form of exercise in almost everyday. Mostly it’s been consisting of hiking up Camelback Mountain a.k.a my church as they just opened back up the hard side (Echo Canyon) again. I have so much anger inside of me still and it seems the best place to take it out on is the mountain, otherwise I will just internalize it all and end up exploding one day. Sometimes I hike by myself, but I have also been going with Tricia again which has been really great. You know, going through what we went through with you was really hard on our friendship. I made some mistakes, had a lot of expectations, felt let down and at times, was really judgmental about some situations that I had no right to be judgmental about. I never meant to hurt her as everything I said was always just coming from a place of love, but I also know that place of love was a little harsh. She being your Godmother, had a really hard time with all of this and somehow we ended up getting off track a bit. Slowly we’ve started to fix some things and the beauty of this is we know that our friendship is always going to be here; even when it’s been a little quiet at times. We’ve had some really harsh talks, some really good talks, and we’ve both apologized as we know our friendship is worth saving. She is family and at the end of the day I know where her heart is and it has always been with you and it will always remain there. I didn’t go to her wedding which you know I am sad about, but it wasn’t for any reason other than it was in Mexico and I wasn’t willing to take Poppy with me and leaving her behind was not an option, either. I did give her something blue to tuck into her bouquet though which was a tiny piece of your blanket. It was hard for me to take the scissors and actually cut off a piece, but I needed something of you and us to be there with her. I wish it could have been the two of us there together and knowing the should have been’s of her special day will forever haunt me and make me sad; but the look of happiness on her face from the pictures I saw do take away some of that sting.

So, Poppy’s first birthday is right around the corner. April 8th to be exact. I don’t know how your baby sister is almost a year already as the time went by so fast. I’ve been trying to figure out what to do for her birthday, but the fact of the matter is I’m feeling overwhelmed about it. Do we just do something quiet at home or have a full on party? I keep going back to what would Poppy want us to do? In Poppy’s perfect world, I’ll bet she would want to just have a day with just a few people and about 100 dogs. She is dog OBSESSED! I told your daddy I’m starting a campaign called, “Poppy needs a puppy,” but he’s just not having it. Anytime she sees a dog, she starts barking and gets so excited that her little body just shakes and she usually ends up waving her arms so fast that she falls over. All day long she goes around our house, walking on her hands and feet, in a dog position and sticking out her tongue and panting like a dog. We don’t even own a dog so the fact that she is doing this from the memory of the dogs that she has seen, makes it even funnier. She is such a little character and loves to entertain us all of the time with her constant babbling, dancing to her favorite song which is “Get Lucky” by Daft Punk or any type of rap music. Shorty’s got game and seems to be developing quite the spicy little personality. I’ll get her birthday figured out soon, but something tells me it’s going to end up being very low key and sweet.

I’ve got to run little man. I’ll write more soon, but I have to get back to this book business. I miss you. I love you. I hope you are safe.

xoxo

If you don’t stop using my son’s pictures, I’m about to get all Jerry Springer on your ass

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As many of you are aware, there have been a few issues with boundaries being crossed in terms of Ronan’s image being used. For the most part, these were limited to young people making “edits”, copying Ronan into a photo of Poppy, things like that…and again for the most part, when we asked people to stop doing that, they did.

But there are a few people out there who are so disgusting, they want to use Ronan’s beautiful face to make money. Not money for cancer research or to help families in need. Money to line their own pockets.

Last month, we were informed a “foundation” was using Ronan’s photo on all of their pages. The photo of Ronan with his little eye battered and blackened was all over the social media pages of this entity, and with it was a plea for donations. To them, not our foundation.

They did not ask me.

They did not even TELL me.

They just stole my child and pasted his little face all over their social media sites.

We contacted them, of course. And we were given a bullshit excuse about it being the “mistake” of an intern.

So here we are not even one month later on March 7th, and whose face is at the forefront of ALL their pages yet again?

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My son.

MY son, who may be known to millions because of this blog …but who is not public property to be manipulated and used.

It turns out this “charity” is using multiple images without permission. Make no mistake, there is no “intern” making a goof or a “customer service team” correcting them. This is a person who is aware Ronan is well known and he thought he could get away with making people think we somehow endorse or support his “charity.”

Ronan is not a piece of meat. He’s not a commodity to trade in. He was a living, breathing child…whose absence is felt in a devastatingly harsh way, every single day. Seeing things like this, seeing people USE our child for personal gain…it makes me physically sick.

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I have been lied to.  I have had words put into my mouth that I have never said.  I have had people in my life try to ruin my friendships. I have dealt with over-sized egos and hidden agendas. I have had people try to use my son, his story, and all he stands for to gain something for themselves.  I have had way too many tweens claiming to be Ronan’s cousin, while crying through social media that they feel the physical pain of missing him when in fact they never even knew him.  I have had mothers straight lie to me, claiming to be a “cancer mom” just like me, when in fact they are not but that doesn’t stop them from begging me to do x,y, and z for them. I have had people claiming to be DYING from cancer which have turned out to be LIES. I have had cancer kids’ made up by other people, just hoping that I would take the bait, and a couple of times I have because who the fuck would make up something like that??? My words have been plagiarized, stolen, and used.  I have tried my best to deal with these situations quietly and to rise above them.

I AM DONE.

After the day I had today where I spent the majority of it crying my real fucking tears for the never-ending pain I feel from this life without my son, I AM MORE THAN FUCKING DONE.  All the other stuff I am capable of handling on my own.  This fucking “charity” has crossed the line.

So they want to use my baby’s image to ask for donations?

Fine. I’ll use their “baby”, too. To NOT ask for donations:

DO NOT SUPPORT THEM. WE DO NOT SUPPORT THEM AND ARE NO WAY AFFILIATED WITH THEM.

I am also asking once again, for THE CHILDREN’S HOSPITALS NATIONAL FOUNDATION to remove any pictures of Ronan, right fucking NOW.

Sincerely,

One very pissed off mother who actually works her ass off to raise real money to help real fucking kids, not to line her pockets.

Rock for Ronan. Look what a bunch of amazingly talented souls put together. Now available on iTunes.

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http://rockforronan.com

The treadmill made me do it.

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Ronan. So, this happened tonight. The usual running around like mad, Poppy is into everything, I’m trying to get something on the table for your brothers to eat before they come home. I have so much nervous energy today that I haven’t slowed down once.  I know as soon as your daddy and brothers walk through the door I will be handing over Poppy to them so I can go and work out because if I don’t, bad things will happen.  At least that is what I tell myself in my head.  I go to my little class where I find myself in a room full of people that I have no interest in talking to, half are doing weights/floor exercises and the other half are on the treadmills while we are getting instructed on what we need to be doing.  I am of course on the treadmill, happily running away while staring at myself in a mirror. My reflection looks sad but determined.

We take turns running at our base pace which for me is a 6.7 speed and 3 incline.  We are told to step it up for 90 second all outs so of course I push myself to the max.  5 incline, 8.0 speed.  I start to run as hard as I can and my heart feels like it’s going to explode out of my chest, but of course I don’t stop.  All of a sudden, I really can’t breathe or catch my breath for what feels like minutes.  Then it happens.

Is this how Ronan felt, right before he died? 

He couldn’t breathe, he ran out of air, oxygen, and probably felt just like this right before he died. 

How could you have let this happen? How could you not have saved him after you promised him that you would? You are the worst human being on the planet. You let your child die and now you just get to continue on with life while he does not? How is that at alright? You should be dead, not him. 

Fuck you. You don’t get to stop and sit here and think about how hard this is and how you want slow down and stop. You keep going because you are not the little boy who got cancer and died.  You get to be here and do this and you don’t get to stop. Ever. 

I stare up at the screen which is monitoring my heart rate and beg for it to come down because if it does not soon, I know I will pass out.  I continue with the torture of beating myself up on the treadmill while flashes of you dying and taking your last breaths fill my mind.  The person leading the class is now keeping a watchful eye on me as I think he has caught on to the fact that I might be over doing it just a tad.  An hour later and I am finished and I somehow make it to my car only to drive home to a house that doesn’t feel like home to me anymore. I head straight for the shower and try my hardest to scrub the images of you not being here out of my head, but it doesn’t work.  I then throw myself in my bed, where I cry the tears for you that I haven’t had for a few days.

Your daddy comes in, asking me what happened.  I ignore him and continue to cry into our mattress. When I finally come up for air, I snap at him that nothing has to happen, for something to be wrong. That I just want to be fucking sad for the one thing that I will be sad about for the rest of my life.  I don’t want to be hovered over.  I don’t want anyone to wipe away my tears. I just want to be left alone.

This is all I can say for tonight. I’ll let my friend, Tyler Knott say the rest.

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

Typewriter Series #690 by Tyler Knott Gregson

There will come a time, a day, a moment when words are not enough.
When the letters hooking to other letters and tying themselves
to each other, the trains of vowels and consonants chasing each other
out of my mouth just won’t do justice to the avalanche that you’re
struggling through.
If this is that day, if these are those moments I will not speak,
but I have no choice but to leave you with these attempts, as futile
as they might be, for words are all I have to offer
and the only currency I believe in:

This is not, and never will be, a goodbye. You should not, and never can
hold onto the should haves or could haves or why didn’t I’s.
The time will come, I promise you, for us all to stop wearing these bodies
atop these souls.  The time of taking one long, full and deep breath
in through these lungs only to exhale it out through brand new lips.
The last light we will ever see through these perfect and beautiful eyes
will be the first light, the exact same and blindingly gorgeous first
light that filters through new irises and shocks our tiny pupils
before we blink. What a gift every single day in between has always been.
What a hauntingly painful and sublimely joyous gift to live, truly live
every single day in between these firsts and yes, these lasts.
Do not carry the weight of all you did not say, the times you did not make
the time or the excuses you made, because there is a secret you must know:
Those that leave us, never do. They see us how we never could and how we
were always so scared to. When they go, bravely stepping into the first day
of their new lives, all they pack into the bags they choose to carry,
are the memories that soothe their longing and and settle their aching bones.
It is we, always we that carries the luggage of regret and burdens of doubt
Somewhere, right this very second, they are beginning their journey back
into love. Somewhere, right this very instant, the first wobbly steps in their
search has begun again.  Somewhere, the only person that truly makes sense to
them, the only person to ever exist and exist exactly for them, is waiting. 

You will hurt.  You will cry and you will be scared. You will miss and long
and ache and look for their fingerprints on the life you’re going to lead
without them.  You will swear you heard, if only for an instant, the sound
of their laughter or the timbre of their voice.  This is ok, and more than
that, this is beautiful.  Hold onto the sadness you feel like a trophy.
Hoist it high above your head and shout to the photo that is not being taken
of you that you loved them, you will always love them and you are proud
of the tears that roll down your face. They live inside the memories that give
shape to those tears and you must never apologize for your sorrow, nor your
joy when it too returns to your days. 

These are the words for those that remain; for all of us and all of you that
are left scrambling and shaking and weeping tears of compassion and joy and
confusion.  These are words when words are not enough.  I say them because I
must say them, because words are all I have to offer besides my shoulder and
my hands and my belief that this is not and never will be goodbye.
Today is and always has been such a perfect day to say goodbye,
and to once again, say Hello.

-Tyler Knott Gregson-

 

 

 

A quick little check in because I miss you oh so very much.

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Ronan. Oh, how I miss this little blog so very much.  It makes me so sad not to be writing on here like I used to.  This will always be my first home, my first comfort after a hard day, and where I found my love for writing.  It’s hard to be away from this space that I used to find so much solace in. I cannot seem to keep up with life let alone a blog these days, not to mention this book I’m working on.  And holy shitballs, I totally have forgotten how much work it is to have a new baby.  Things are so freaking busy around here that I feel like my head is going to fly off and just explode.  Oh, and my grief.  I miss being with my grief a.k.a Inferno Fuckwad Bob, so very much. It’s not good for me to not have the time to nurture and sit with my grief the way Dr. Jo has taught me to do.  I promise that I will make some time for it soon.

I can try to sum up what has been going on, but I have no way of remembering everything.  Macy came into town for about a week and it was of course the most beautiful happy/sad/ time.  She was in for work so she got to spend two weekends with us which is always so good for my soul.  We laughed a lot and cried a lot as well.  On one particularly hard Sunday, I found myself curled up in her arms on your bed where I just sobbed for you as the missing you part of all of this never gets easier.  It still sends me into a whirlwind of complete and utter devastation at the drop of a hat.  My time with Macy wasn’t all tears.  We had the BEST time playing with your Poppy Roo and making up ridiculous songs to her like, “My two moms” which was all about the fact that Poppy does indeed, have two moms because if I wasn’t married to your daddy, I would totally marry her;) She is the best wife ever and one of my other little soul mates floating around on this earth.

Poppy came down with a little fever while she was here and we wound up in the waiting room at our pediatricians office where we know we really did look like Poppy’s two mom’s as we were resting each others heads on one another’s while Macy sat and rubbed my arm.  I pretty much wanted to curl up and die when I saw Dr. Campbell exam Poppy and Macy’s eyes fill with tears as she did her routine exam which included the pressing down hard on her belly to make sure there was nothing out of the ordinary there.  Macy knew why she was doing that and there was no stopping her tears from falling.  I just gave her a weak smile as I watched her wipe them away.  We talked about it afterwards and how hard it often is for me to walk back into our pediatricians office without you. Well, it’s always really hard for me to walk back in anywhere we used to go, without you.  Macy watched as I had to fill out the new patient forms updating our family info such as kids’ names, ages, etc… I looked over at Mace and said, “I’m writing Ronan down, too. He is still my child.” Macy just looked at me and said, “Of course you should,” as she gave my hand a little squeeze.

My weeks have been filled with pretty much everything Poppy and just trying to keep up with her.  I truly had forgotten what it is like to have a baby and now a very active baby.  How 10 months already flew by, I do not know.  She is the happiest little thing and it is so beautiful to see.  She is my constant reminder that no matter how hard of a time I truly think I am having, because there still are times that those voices creep into my head and tell me that everything I am doing is wrong… Poppy is proof that I am actually doing alright.  I don’t think she would be such a happy girl if I really were doing as shitty as I sometimes think I am.  I know the weeks that are hardest for me seem to be the weeks that I am not sleeping well.  It’s when my insomnia kicks in that the screaming in my head seems to always be the loudest.  This past week has been alright and I am so thankful for that because if I would have checked in with you last week, I would have told you I had my bags packed to check into an insane asylum.

Your brothers and their never ending sports have been keeping me busy as well, although I give pretty much all of the credit to your daddy who is the one who really keeps them on track with all if it with his coaching of their baseball team, helping out with baseball, and flag football. He is the most amazing basketball coach and has your brothers team ranked #2 in all of Arizona for a fourth grade team.  I know you would be so proud of that and basketball truly seems to have been such a saving grace to your brothers.  It has kept them focused, on track, and it’s almost like a form of therapy for them.  I could not be more proud of their dedication, will and determination.

I’ve been hiking, running, and doing my little Orange Theory Workouts like crazy.  Exercise is still one of the main things that quiets the screaming in my head and gives me just enough of a break to stay sane.  My time at the top of Camelback is always my favorite as it really is the time I feel quietest and closest to you.  The other day while I was sitting on a rock, thinking about you, I had a little hummingbird fly right up to my face.  I grabbed my iPhone thinking there was no way it was going to stay right there long enough for me to get a picture, but it did and I was able to snap the most amazing photo.  It was a moment that I still have not been able to find the words for.  I absolutely know that it was a little sign from you telling me that you are always with me.  On Saturday morning I hiked Camelback with Tricia and Marisa- my two oldest besties from my previous life when you were still here, alive and well.  It has been so long since I have been with the two of them and I cannot tell you how nice it felt.  We had breakfast for Marisa’s birthday and then decided to brave it up Camelback Mountain in the middle of our little Arizona rainy day.  Once we were at the top and had been sitting for a while,   that little hummingbird flew right up to me again.  It gave me goosebumps and chills all at the same time.  I think it was your way of telling me that you were so happy to see me spending time again with my old friends, as you know they are so good for me.  It’s taken me a lot time to be able to get to a place again where I can truly connect with the ones who knew you, loved you, and hurt so badly from losing you.  For a long time the pain of being around them was just too much, but now I feel like I am at a place where I am ready and able to come back.  I am just so thankful that they have both just been standing by for my return.  I have missed them so much and Saturday ended up being the most perfect day.  As soon as we were finishing up our hike, it started pouring down rain.  Marisa said she knew that you made it rain at that perfect time because had it been raining like that as we were climbing down Camelback, one of us would have surly fallen and broken our necks as that mountain is beyond slippery and dangerous when it’s wet.

I am trying to make myself do things that I know make me feel somewhat good because I know the shit storm of May is fast approaching.  Things like buying tickets to upcoming concerts like Lorde and Lana Del Rae, both whom I am so freaking excited for.  Also things like spending time with the ones who I know are best for my soul like our dear Kassie who I spent all of Saturday with watching “Girls” episodes while eating Nutella straight out of the jar. Ummm… excuse me…. but where has this thing called Nutella been all of my life?! It’s like crack in a jar and I might have a problem especially during my nights of insomnia where I always find myself with a spoonful of it in my mouth. It’s the simple things that make me the happiest and I have learned that finding people who truly feed your soul is the best medicine around.  I am very blessed to have the friends that I do, I know this. Your Sparkly was inquiring about my weekend and I told him I had spent Saturday night, cuddled up with my 23-year-old best friend.  He said something like, “How come you love to spend so much time with people who are so much younger than you?” I just laughed and told him I like to hang out with people based on who they are as human beings and age is not a factor.  I like to spend my time with the people who make me think about things, who push me to do better and be better, and who actually somewhat get me – himself included.  I often feel like people get too caught up in this whole age thing in life.  You should just be with the people that make you happiest and Kassie truly makes my heart sing.  I wish so badly you could be here to know her, Ronan.  Sometimes when I’m watching her with your Poppy sister, I close my eyes and pretend it’s you that she is bonding with, kissing on, and loving.  I know that in a way it is and sometimes that even makes me smile.

Alright little man.  I promise to write more later.  So much more I need to tell you/fill you in on but this is all I have time for as of now.

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

xoxo

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Read. Listen. And never say these words to someone who has lost a child. I’ve heard them all way too many times.

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http://stillstandingmag.com/2014/01/6-things-never-say-bereaved-parent/

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

Your song for the night. Sorry it’s been so long since I’ve done one, Ro baby.

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Obsessed with this song.  It may make me bawl like a baby, but it is so beautiful. Plus, Poppy loves it.

http://www.youtube.com/watch?v=-2U0Ivkn2Ds

  • Instagram is my BFF

    Somebody get this kid an agent. #ronan #fucancer #omg #hes10 #basketball #littleballer #madskills Brother pick up time! #poppy#ronan #fucancer Working on my skin cancer. #ronan #fucancer #justkidding #coveredinsunscreen #camelbackmountain #hotasballsuphere #mommytimeout She had to stay up past her bedtime to wait for her sissy to get home. #poppy #ronan #fucancer #soulsisters @knjoy Watching that pretty Arizona sunset. #poppy #ronan #fucancer #poppyrooiloveyou Fuzzy besties. #poppy #ronan #poppyandmama #fucancer #love For the past two weeks all Poppy has been doing is carrying around Ronan's picture, kissing it, saying "Ro Ro" and trying to open the frame up because I think she thinks if she does, he will come out and play with her. It's heartbreaking and so very sweet. I'm amazed that one of her first words was Ro Ro and that she walks around saying it all day long as if he is her very best friend. #poppy #ronan #fucancer Sorry to wake you sister, but we have to get your brothers from school. #poppy #ronan #sleepysister #fucancer Hoopster. #ronan #fucancer #littleman #basketballballer #futurenbaplayer @quinnthompson24 Air. #ronan #fucancer #q-dub #littleman #basketballballer Truth. #ronan #fucancer #stopcomplainingaboutstupidshit #begrateful #insomnia Mother Nature, you are pretty rad. #ronan #fucancer #camelbackmountain #echocanyon #nosociopathsallowed
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