ROCKSTAR RONAN

Ronan. It’s been so long since I’ve written on here and I feel so much guilt for that. Not only that, but I miss writing on here to you so much. I’m hoping to wrap some things up soon which will free up some free time so I can start writing to you again on a regular basis. So much has been going on and it would take me hours to catch you up on things. I don’t have hours tonight as I have to get back to my other writing soon. For the most part, things are going well. The foundation is still massively busy and we have some great things coming up for the month of September. My hometown just put on our 3rd Annual 5k and it was such a beautiful success. So many beautiful faces came out to run for you and I am still in such awe of the way my little town pulls off such an amazing event. It just gets better and better every year.  Thank you to everyone for all of your hard work organizing this, all the amazing volunteers, everyone who donated items, and all the people who came out in support of my baby boy. I know how much work pulling off something like this is and I am forever grateful for your love and support in this fight. Thank you again so much.  Also, a huge thank you to Ashtown Brewery for an awesome event after the run. Best Brewery in all of Washington. Fo’ shizzle.

So, do you want to hear my VERY dramatic bedtime story tonight? I’ve got a good one as it just happened a few nights ago and I feel like I am still recovering from it. We are out in Washington for the summer like we always are. I am now feeling like every time we are here, I have a major freak out about something, but this one was the worst. That little Poppy sister of yours just turned 2 in April. She is the perfect mixture of a girly girl tomboy. She is my insanely smart, fiery little girl who has decided that TuTu’s are her favorite thing in life as long as she can be playing in the mud in one while being covered in bruises from her rough and tumble ways. She makes me laugh constantly with the way she speaks in full sentences and uses words that are way too big for a 2-year-old to be using. I am amazed by her and the way she lives her life so vibrantly and big, for being so tiny. Needless to say, she is the love of the my life just like the way you and your brothers are. I am so thankful everyday to you for her. She brings us all so much happiness and you know we need that around here. Anyway, back to my story… sorry I got off track, I’m that annoying mom that could blab about my baby girl all day long. I also am borderline obsessed with the age of 2. She is a lot like you at this age and it makes everything so bittersweet.

Let’s back up a bit. Your Poppy sister also has that light skin that bruises very easily. I guess I started worrying about her bruises about 4 months ago. It was like a little bird was sitting on my shoulder just pecking away at me and the voices started slowly creeping inside of my head. Bruises can be an early sign of Leukemia. I now know all the freaking early signs of every pediatric cancer out there and bruising easily is one of them. For the past 4 months I’ve pretty much ignored the voices as your sister has been nothing but healthy much like you which seems like a sick joke. I went on with life and got us all ready to drive us out here for the summer (solo road trip is a story for another time).We arrived safe and sound and ready to be in our favorite place on earth for the summer. My soul aches for the Pacific Northwest so badly as I miss it so much. Everything started out wonderfully, we had a great family vacation in Sunriver, Oregon, but then the, “My stomach hurts!!!!” started up from your Poppy sister. You know this is one of my triggers. My stomach hurts to me really means she probably has cancer as that is one of the first things you said to me a couple of months before we found a huge tumor in your abdomen. Poppy started saying it off and on, usually before bed when she wasn’t quite ready to go to sleep. I told your daddy. He told me it was nothing and kids get stomach aches. Yeah, but kids also get stomach aches and cancer and die, too. I know both worlds very, very well. I kept my eye on her carefully the following weeks where I watched her act like a totally healthy child.

I sing to Poppy a lot. We listen to music non-stop. We were in my old bedroom one day and as I was getting her down for her nap she looked up and me and goes, “I gonnnnnnaa hold yaaaaa, gonnnnnnaaa kiss armsss, Hey, Hey, Hey, Hey, big jet plane.” I started bawling. She just looked at me and started singing louder. “Gonna take you for a ride on big jet plane..Mama! Twinkle Twinkle Star!” It took me a minute and I had goosebumps all over my body. Big Jet Plane was one of your favorite songs and Twinkle Twinkle Little Star was the song I always sang to you, especially right before you died. She continued to beg me to sing to her, while she squeaked along with me, singing most of the words spot on. I fell asleep crying and holding her little body close to mine. She is doing so many of these little things that keep you so close to all of us, especially to her. I woke up from my out-of-body experience feeling a bit jet lagged to say the least, but so thankful that she keeps you so close to her heart even if she doesn’t even fully realize she is doing so. It means everything to me.

That evening, I was getting Poppy ready for her bath when I noticed 5 suspicious bruises going down her spine. They were perfectly round and in the shapes of small circles. I fucking flipped out. I felt my stomach drop. I immediately snapped a few pictures of them and sent them to our favorite lovie. (P.S. Names have been changed to protect the innocent). He told me the pattern of bruises were strange and wanted to know what we had done during the day or if she had fallen or had any kind of trauma. I told him no, that we just had a normal day and she was being her rough and tumble self. He told me not to worry which was completely lost on me. I was ready to throw Poppy in the car and either drive her to the hospital in Portland or all the way home so I could have her checked out there. After bath time, I took her upstairs to brush her teeth. She hates having her teeth brushed and fights me on it every night. Sometimes I just let her do it, but every couple of days I have to basically hold her down and scrub away. On this particular night, I don’t know if I scrubbed too hard or what, but her top gums started bleeding everywhere. Another sign of childhood leukemia. The sight of blood was enough to fly me over the coo coo’s next. I handed her to my mom and went completely mad. I started pacing back and forth. I called your Daddy and was crying hysterically. I listened to all of his rational reasoning but nothing was going to calm me down. I called our other little lovie, Rach, in New York. I seriously think this is how our conversation went:

Me: Rach! sobbing. I think Poppy has Leukemia. more sobbing. I told her all the reasons why.

Rach: O.k. I promise you she doesn’t, but let’s talk this out. Poppy cannot have Leukemia, this sounds more like an anemic  thing. If it will make you feel better, you can take her to get checked out. You can have her blood looked at. Do you want me to call the hospital in Portland right now? I’ll make sure they get you in and treat you like gold.

Me: Sobbing, still. I don’t know. Let me try to calm down, I’m not thinking clearly. I want to have her checked, but I’m not sure I can take her tonight.

The phone call went on for a bit longer. I also talked to your daddy again. Texted with Rach some more. All in all it took 4 different people, 3 of them being doctors, to calm me down. My mom was a wreck from watching me be a wreck and I don’t even want to tell you how upset I was that your brothers had to witness a bit of this as well.

After I was able to calm down, I tucked your brothers and sister into my bed where I watched them all sleep as I tossed and turned all night long. I woke up the next morning feeling like I had been hit by a truck. Poppy woke up, ready to take on the world as always. I usually want to take on the world with her, but I had decided that the world had to stop until I could confirm for sure that she did not have Leukemia. I texted our lovie the pictures again. He showed them to another doctor. He called me. “Sweetheart. What do you want to do? If you want to get her checked out, go and get her checked out, if nothing more for your peace of mind.” I asked him to fax in a doctor’s order to have her blood drawn at a local place in town. I got her ready, dropped your brothers at Nana’s cafe, and took Poppy to get a mother fucking pokie in her arm.

She was such a trooper. Oh, in no way did she corporate. She was straight pissed off once she knew what was happening. I had to hold her as she kicked, screamed and cried while I told her over and over how sorry I was. After the blood draw was over, the nurse tried to put a sparkly band-aid on her. She ripped it off and said, “I DON’T WANT A SPARKLY BAND-AID!” Little badass. I scooped her up in my arms, put her in her car seat, and called our lovie to tell him it was over as I cried and did what I do best which is beat myself up for being a fucking maniac. I know I’m not really a maniac. I’m just a mom who has been through the worst thing possible and because of that, my worry is constant. My worry never goes away. I don’t know how to fix that, but for the most part I manage it as well as I can.

“I feel horrible for putting her through that. This is not my finest moment in life, you know.” I continued to cry.

I got the whole, “Hey, don’t do that. Don’t beat yourself up over this. You did what you had to do. What you did is not an overreaction after all you’ve been through. You have every right to worry about this. Let’s just wait for the results and what ever happens, we will figure it out from there.”

I then put Poppy on the phone where he talked her while she smiled that gorgeous smile of hers at me. The pokie had already been forgotten by her, but not by me. I’ll never forget what I had to put her through to make sure that she was safe and the healthy child she deserves to be. I found out a couple of hours later that all of her blood work came back completely normal. I let out the sigh of relief that I have been holding in for months. I finally feel like I can breathe again and I know that won’t last forever, but for now it is enough.

Ronan, I must continue the rest of this later. It has gotten so late and my head is pounding. It just started to rain here and that seems like a little sign from you to shut things down and go to sleep. I miss you so much. So very much.

G’nite. I miss you. I love you. I hope you are safe.

xx

Ronan. It’s almost that time again. That dreaded time in May that I hate so much. Tomorrow around 3:15 a.m. you will have died in my arms, 4 years ago. I still don’t know the exact time because I never sent in for your death certificate. I keep telling myself I’m going to do it, but I just can’t seem to bring myself to fill out the paperwork just so I can have a certificate that says you are dead. That makes everything all too real and the tiniest piece of me is still holding out hope that this is all in fact just some sick twisted experiment about what happens to a mom after she watches her son die from cancer. I saw that movie “The Truman Show” many years ago, so why can’t that be what happens to me? If I tell you what happens almost 4 years later of you being dead, do you think somebody will drop you off at our doorstep so we can finally be reunited? I still look for you every time our doorbell rings. I don’t think that will ever change.

So, almost 4 years later and what can I tell you? I can tell you this:

Life sometimes feels really hard. As in bring me to my knees, I’m giving up hard. I still have days that I just want throw in the towel and run away from everything. I still have days where sometimes I can’t go to your brothers baseball games because I can’t get over the fact that you are not on that field, following in their amazing footsteps. I still have days where I am so angry at the stupidest things such as the sunshine, laughter from the Television, or even the new Star Wars movie that is coming out because it kills me that you will not be here to see it. I still have days where my tears are uncontrollable and my anger is directed at all the wrong people, but those days have become less and less. I have learned a lot in the 4 years of your death. I have learned a lot by also having my father die just 5 short months ago. Mostly that life is fucking fucked up and can be totally unfair, but it is up to me to make the most of what I have been handed, even if it is the most horrific thing a mother can endure.

I have learned to let go of a lot of my anger. I am learning to be less judgmental and more compassionate towards other people. I have learned that the human spirit is one of the most incredible things in the world. I have learned that the sorrow I feel every single day pushes me to do better, be better, do more, say less, say more when necessary, to love the people in my life harder than I ever knew I was capable of loving after losing you. I have learned that with a very broken heart, I am capable of feeling and giving love again. I never truly thought I would be able to feel things like love and happiness again, but I can and sometimes I am even able to let go of all of my hurt and get lost in it for just a bit. I am hopeful about the future and hope is a word that I hated for such a long time, but now it doesn’t seem to taste so bitter. I wake up everyday knowing even after losing you to cancer, I am still the luckiest mama. Your brothers are still the most incredible boys and that sister of yours… well, I can say without a doubt that she is the one who brought hope back into my life. She has saved me in a way and reminds me everyday how incredible it is to be alive, full of life, innocence, and feistiness. She reminds me of all the beauty in the world and that everyday we are here, life should be full of laugher, love, and adventure. I am so thankful to have a little person in our house again who calls me mama. Your brothers out grew the mama thing long ago. It is nice to hear the pitter-patter of feet running down the hallway again and the trouble that comes with it. Trouble once again consists of things such as coloring on the walls, covering our dog, Teddy with lipgloss or applying my blush she hijacked from my drawer all over her face. Just the kind of trouble I have missed and love so much. It is nice to have some innocent trouble back in our house again. It always reminds me so much of you.

Tonight, Poppy fell asleep so peacefully in my arms. 4 years ago tonight, you were doing the same thing but only to die soon after. My heart is so heavy, sad, and broken still. I am forever so sorry and would still trade places with you in an instant. I miss you so much, but especially on nights like tonight when every cell in my body can feel you leaving this world again. Tomorrow night on the anniversary of your death I have to stand on a stage and give a speech for an award I am being given. I am so humbled by the honor and so proud to share your story, but I quite simply don’t know how I am going to be able to function let alone give a speech in front of hundreds of people. I just keep hearing the words of one of the people I love most in the world telling me, “I promise you, Ronan will be with you tomorrow night. He is going to be watching you and right there with you. He won’t let you do this without him.”

Please let that be true. And please don’t let me get up on the stage and just crumble up in a ball because I am just too sad to speak. I need you to surround me and give me the strength to be strong on the day that you died so I can make you proud and so we can help other people. In the words of the ever so beautiful, Taylor Swift- “The stakes are high, the water’s rough, but this love is ours.” That song always makes me think of you. Our love story will never end, I promise you that. Our love story is doing amazing things and will continue to do so.

Thank you for being my greatest teacher. Thank you for keeping us all safe. Thank you for helping me to get back up on my hardest days. Thank you for teaching me that it is o.k. to embrace all the darkness that comes with this as long as I let in a little light every once in a while.

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

Home

Ronan. 2014 is over and that means another year without you is gone. In this life I live now I don’t have the luxury of saying things like, “I cannot wait to see what 2015 has in store! I just know it is going to be the best year yet!” How do you have the best year yet after the death of your child? I don’t think that you do. I guess I cannot speak for the other bereaved parents who walk beside me, but in my mind the best year yet just does not exist anymore. Don’t get me wrong, I am capable of having really, really, really good days. I have those days a lot, especially with all the happiness that Poppy and your brothers fill me with, but you will never not be missing from my blissful days of always almost perfect. What are my hopes for 2015? That we all stay healthy and don’t die. That I have more smiles than tears. That I get more little signs from you. That your brothers and sister continue to flourish, grow, and be happy. That I get to continue to help save the lives of kids with cancer by funding amazing clinical trials. That I continue to follow my heart in everything that I do because I know that my heart is still just following you. I don’t think you will ever lead me down the wrong path and if you do you know I will figure out what path I need to take to get back to you. I trust in where you are taking me.

Too much has gone on to catch you up. My dad dying has really thrown me for a loop. I still cannot seem to wrap my head around it. I wake up everyday and know it happened and losing my dad hasn’t paralyzed me like it did with you for so long. I am capable of going on with my days, but all of a sudden it will hit me and I just feel extreme sadness wash over me which is usually followed by hot, fast tears. I am trying not to have too many regrets or beat myself up over the things I didn’t get to say, but you know I am a glutton for punishment. I don’t know how to be any other way.

We have been at Nana and Papa’s for most of Christmas break and I have tried my best to keep up my appearance of “Hey kids, everything is o.k. because I am not about to ruin your Christmas!” I did a lot of running while I was here in that dark, gloomy weather where nobody can tell if I am crying because the tears I cry while running the lake just look like rain. I love the rain so much for so many reasons and this is one of them. I did lose my shit one night and put the entire house on such edge that I am surprised I wasn’t taken to an insane asylum.

Fun story goes like this:

I’m upstairs. Boys, your daddy, and Papa are outside. Nana is in the kitchen. Poppy is in the dining room. I hear crying so I come downstairs to find Poppy down on her knees, crying. Nana didn’t see what happened, but she thinks Poppy fell while running. I go to pick her up and look for signs of any bumps, bruises, red marks, etc… I see nothing. Poppy is now wincing in pain and will not let me put her down. I set her down for a second, but she falls because her right leg is hurting her and she won’t put any pressure on it at all. She can’t walk. I hold her for a bit, hoping that she will be up and running soon. 20 minutes pass and she is still crying in pain when I put her down. I feel all the blood in my body, drain to the floor and I am just sure if I look down I will see it all pooling at my feet. I carry her outside to your Daddy and inform him of the situation. Pretty soon, the entire house knows that Poppy can’t walk and we are all in the living room where I am holding her while staring daggers at your daddy. Your brother keeps yelling, “Put her down, see if she can walk now!” I do. She can’t. I pass her off to Nana while I go upstairs, pretending to be busy with laundry. Your daddy follows me.

“You need to calm down and stop thinking what you are thinking. If you react this way whenever something like this happens, you are going to kill yourself with worry.”

My eyes are too blurry with tears to see him clearly but I of course manage to freak out on him anyway.

“Why are you not more concerned about this?! We need to take her to the Portland hospital right now and have them do every scan on her to make sure she does not have cancer! This is what happened to Ronan in the end! He couldn’t walk because he was in so much pain! What if her little body is filled with cancer too and this is the beginning of the warning signs?”

“Maya. We are not taking her to the hospital to be put under anesthesia for scans. This is a totally normal thing. Kids get pain in their legs and she probably just hit it or fell really hard. You have the entire house in a panic.”
Granted, it was a quiet panic but the air was filled with so much tension that it was palpable.

I went downstairs to tend to Poppy and distract myself so I gave her a bath. Your Nana came in to find me crying as I bathed her. She quietly told me that Poppy was alright. I looked at her and said, “What if she has cancer?” She told me she understood my thought process, that she hated that I had to think that way at all, but this was probably not cancer.

By this time, Poppy was starting to put a little more pressure on her leg. By the time she got out of the bath, she was attempting to walk and as the night proceeded, she was walking again, but with a slight limp.

This was probably just my lovely Post Traumatic Stress Disorder kicking in and not Poppy has cancer.

When this all happened I was instantly taken back to the last few weeks with you where your little leg was hurting so badly, that you could hardly walk.

For weeks you said, “Mama, rub my leg. My legs hurting, mama. Rub it. Please just rub it, it hurtsssssss, MAMA!”

So for weeks that is all I did while feeding you Morphine non-stop.

I’ll never forget your little leg and I’ll never get over how heartbroken I am that I couldn’t fix it or you. I will forever be so sorry.

I have to go now, Ro. I have a headache from all of my tears tonight because I just fucking miss you so much. So much, little man. Always.

I miss you. I love you. I hope you are safe. Happy 2015. You keep me safe, I’ll keep you wild.

xoxo

 

 

 

 

Ronan. My father really was one of my greatest teachers in life. His lessons were not always lessons I wanted to learn as many of them were painful, but I know for a fact that they did shape me in a way that I will forever be grateful for. Our relationship was complicated to say the least, but I know he loved me with all the love he was capable of giving. He was the first person to teach me what it really meant to live of life of being as wild and free as I possibly could. I told him everything. I mean, EVERYTHING. We had no secrets from one another and I always knew I could go to him with whatever I needed to and I could always depend on him to give me the most thought-provoking, honest advice. Our relationship was so brutally honest that it often hurt, but it was a hurt that was always filled with depths of love. He was the only person in the world really that I ever fought with. I mean full on screaming fights on the phone that often ended up with him hanging up on me and me screaming to your daddy, “I’m never talking to him again!!!” Your daddy would look at me, tell me to be the bigger person and call him back which would take me a while, but I usually would do so. We would kiss and make-up, move on, but our very passionate fights would pick up the following month or so. It was always over the same things. The past he was upset about. The past that I told him he needed to get over. Me, being the parent when all I ever wanted was to be the child and have a normal father figure who did the normal things that fathers do. My father was far from the picture perfect role model of a father that I grew up longing for, but he fathered me in a way that I ended up loving, eventually accepted and admired. He was my biggest cheerleader, pushed me to pursue and chase my wildest dreams, taught me to think outside the box and to think about things with such depth that a world where things are just black and white never existed for me. He taught me this thing called “society” where everyone wants to place “rules” and “regulations” on you is pretty much bullshit and it was up to me to break free of the chains of the world that wanted to hold me down. My dad is the one who nurtured my inner rebel and taught me that it is o.k. to push boundaries, if you did so in a thoughtful way. He was so full of life, but also always embraced death and we would often have long, intellectual discussions about the after life and what he believed in. He promised me that I would get to see you again as I spent many hours on the phone screaming and crying about your life being cut way too short. My father thought about things in the world that most people don’t just due to the laziness that shoved down everyone’s throats and they happily swallow. He questioned everything about life and death and was open-minded to so many possibilities. I always loved that about him so much.

My father had been talking about his death for so long that I knew what he wanted. He had been preparing me for this day since I was a teenager. He left very specific instructions and left me in charge of everything. Even though I know I am capable of handling things, the weight of this still feels very heavy. I knew he would not want a normal funeral. I gently spoke to his wife about what I felt would he would have wanted. I told her since we were having him cremated, there was no rush to do anything. Another lesson I learned for you, Ronan. After your death, your services were so soon that I feel as if I really wasn’t as thoughtful as I could have been in regard to the beautiful life you lived. I was a walking zombie. I proposed to Carol and Uncle Shawn that instead of rushing and doing something, that we should wait until the summer and have a big party/celebration in honor of his life. I know this is what my father would have wanted as nobody loved a good party as much as he did. They both liked my idea and agreed with me so a date we will set a date soon for that.

After the funeral home ordeal, I wish I could say that I got to take a minute to break down and spend the next week that I was in Washington, properly grieving for my father the way I needed to, but that was not the case. So much had to be done. Attorneys, tying up loose ends, the strangers that I did not know who were living on his property in a freaking fifth wheel trailer. He had mentioned he had some “workers” living on his property, but I was pretty sure it was just another case of people taking advantage of my father and his big heart. I grabbed some dear friends, my brother, and we headed up to his house to secure whatever we could. Securing meaning renting a big ass U-haul to take some of his things to a storage unit, telling the “workers” they had 48 hours to vacate the property and having them tell me some story of how “someone” broke into my father’s house after hearing he had died. I went through my father’s house as quickly as possible and I saw flashbacks of my childhood all damaged, broken, and bruised. I tried to salvage as much as I could, my heart included. Some random lady followed me about as I went through my father’s house, telling me such and such belonged to some dude named “Rob.” I looked at her and freaked the fuck out. “Lady, I don’t know who the fuck you are, but as far as I’m concerned everything in this house belongs to my father. You’re lucky I don’t kick your ass out right now! If you think something belongs to “Rob” than Rob can come have a conversation with me about what is his. You all have been stealing and taking advantage of my father for years and enough is enough. It ends here! Get out of this house, get off of his property, and stop following me around!” I watched myself turn into the tough ass girl that deep down hides inside of me and doesn’t come out to play very often. I was so mad, sad, and angry for various reasons but mostly because of all the broken dreams I saw shattered around me. Dreams that my father never got to fulfill and now all that was left was a bunch of fucking crap items bought on sale that he was saving for a rainy fucking day. Thousands of books, boxes of things that had never been opened, projects unfinished, my beautiful childhood house was now full of clutter, old drawings, pictures, and scraps from my childhood that he had saved in hopes that things hadn’t turned out the way that they had.

I spent days going through as much of his things as I could. I had arranged with the funeral time a time that I could go down there and see my father. I left Poppy with your Nana and Papa to go and see him, one last time. Alone. I sat nervously in the waiting room and fidgeted with my coat. The man who was in charge of everything came to get me and told me to take as much time as I needed. I was led back to a big room that was filled with church pews and as I entered I saw my father in the front lying on a table, dressed in some hospital gown that I know he would have been pissed about. I couldn’t go to the front at first, so I took a seat in the back and while I stared at my dad.

I cried, uncontrollably.
I told him all the things I wanted to tell him, but mostly just how much I loved him. I wondered why I was sitting alone, but then I remembered that I am never alone because you are always by my side, even though I cannot see you.

I moved closer to the front and cried some more. I kept waiting for my dad to sit up because I just knew this was a sick joke that somebody was playing on me, once again.
He looked so strong. So peaceful. I begged for him to wake up. He never did.