I’m so excited to be a part of this amazing campaign!

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Oh, Hello! Don’t worry, Poppy doesn’t have cancer. It’s just my PTSD taking over my life.

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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

My Dad Died on a Monday, Part 2

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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 want 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.

My Dad Died on a Monday, Part 1

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Ronan. The only thing guaranteed in life is death. And once again death comes knocking on my door and I have no choice but to answer it.

My Monday morning started off beautifully. Most people hate Mondays, but I am obsessed with Mondays. It’s still the quiet Sundays that destroy me. The Sundays where too much family time exists which you know I love, but they are still so painful as the reminder of your absence always seems extra heavy on Sundays. Mondays to me are beautiful. I look forward to being productive, too busy, and getting started on all the tasks I need to complete for the week. Last Monday started out just like normal. I took your brothers to school, Poppy and I ran to the store to get groceries so I could have a hot meal on the table for your daddy and brothers that night. I came home, unpacked everything, fed your sister, listened to your Nana as she filled me on the tragedy of the day which happened to be my brother’s new puppy who jumped off his couch and broke her little leg. Your Nana was very upset about this situation because his sweet little puppy was in pain and was now needing to have an emergency surgery. I hung up with her and told her to keep me posted on what ended up happening. I went on about my day as if it were any other Monday. I put Poppy in my bed for her nap (yes, still co-sleeping/my daughter will die if she sleeps alone/i’m fucking paranoid) and my phone rang right as she was getting ready to fall asleep. It was Nana calling and normally I would have ignored this call (sorry, mom) but only because I don’t want to pick up and take the chance of waking Poppy. I picked up this time because she was so upset earlier in the day about the dog and I wanted to make sure everything was alright.

“Maya… it’s your Dad. He’s dead.”

I jumped out of bed. “What?! What are you talking about?! No he’s not!”

I heard my mom’s voice shaking on the other end. “Shawn found him dead at Carol’s house.”

I jumped out of bed, grabbed Poppy and ran her back to her room where Kassie was getting ready for work (Kassie is living with us, have I told you that yet? I’m so far behind on an update and I’m so sorry about that).

Kassie saw the look on my face as I’m sure I was as white as a ghost. I somehow managed not to drop Poppy on her head while handing her to Kass. “What’s wrong?!” she asked.

“My dad. It’s my dad. He’s dead!” I ran out of the room after I knew Poppy was safe with Kass and outside to try to get some more information out of my mom. I fell to the ground, clutching my phone.

“How? Who found him? Where? What time? He wasn’t sick! I don’t understand!”
My mom did her best to explain to me what she knew, but she didn’t know much. All she knew was he was found in bed at his wife’s house where he had lived for many years and after his wife found him, she flipped out and called my brother.

“I’ll call you back when I know more, honey. I’m so sorry.” Click went the phone and I couldn’t get up off the ground. I tried calling your daddy over and over again. No answer. I pressed the number right underneath your Daddy’s. Ring, ring, ring…

Mr. Sparkly Eyes picked up.

“Hello.”

“Hi. Ummm… I don’t understand…I don’t know what happened,” my voice was small, shaky and the sky was spinning. I felt like I was going to throw up.

“Darling, what’s wrong?” he said.

“It’s my dad. He’s dead. My dad is dead and I don’t know what happened.”

I heard his voice on the other end.

“Shit. What? What happened? Tell me what you know. Who do I need to call? Did you call Woody?”

“I called Woody, I can’t get a hold of him. My brother found him, I don’t know anything. My mom is going to call me back.”

“Do you want me to call your brother or your mom? Tell me who to call.”

I started crying. “I don’t know. Don’t call anyone yet. I need to talk to my mom again. Fuck!! This cannot be happening!”

I hung up with Sparkly after I heard him telling me how sorry he was and to call him back to let him know who he should call.

I was still sitting on the patio when Poppy, Kassie and Teddy (crap, did I tell you we got a dog?) came to find me.
I called and texted Woody frantically for the next 45 minutes, not aware of where my body physically was. One minute I was in our backyard, the next minute I was hiding on the side of our house, huddled in a corner where the tears splattered at my feet and I could hear Kassie taking care of Poppy while trying to get Teddy back in the house as he had run out into the front where he was trying to find me.

I went back into the backyard where I sat on my little brick garden area. A hummingbird flew right in front of my face, stopped, stared at me for a few seconds and flew away. I had one of those moments where I went, “Wait, did that really just happen?” It did. I haven’t seen a hummingbird in months and I almost never see them in our backyard. I know that was your way of telling me it was true, my dad was dead and now he is with you.

Finally, my phone rang and it was your daddy.

“Sorry, I was in court, what is going on?!”
I screamed into phone, “Why haven’t you been answering?! My dad is dead!”

The next thing I knew, your daddy walked through the kitchen door, asked Kassie to watch Poppy as thankfully she had called into work to let them know she would be late and led me back to our bedroom where I crawled into bed and tried to pull the covers up over my head while I made some sort of decision as what needed to be done. I had a plane reservation for Friday to fly out to Washington for Uncle Shawn’s girlfriends baby shower (did I tell you he is having a baby and it’s a girl?!) Your daddy called the airline and had my flight changed for that very next morning. I just wanted to get home asap. I left that morning with Poppy and somehow managed to get to Portland while taking care of your very, very, very extra spicy sister which I can usually handle well, but under these circumstances I am surprised I didn’t forget her at the security check point.

We landed in Portland and Papa Jim picked us up. Poppy screamed the entire last hour of the flight, “PAPA!! PAPA, PAPA, PAPA!” She is just a little obsessed with your Papa Jim. Papa was waiting for us at the airport and the car ride home was so heavily sad that I don’t remember much of it. We arrived at Nana’s, I think I unpacked our suitcase and got Poppy changed and ready for whatever was to come next. The next few hours were a blur as I was still trying to figure out the details of what had happened. I was having so much information thrown my way that processing what had actually happened wasn’t in the cards just yet. Decisions had to be made as far as what to do with my dad. I left Poppy in the care of Nana and Papa while I went to the funeral home to meet Uncle Shawn, his girlfriend, and Grandpa Steve’s wife, Carol. Uncle Shawn grabbed me as soon as he saw me and let me cry in his arms before we walked into the funeral home. I came prepared with my shaky notes.

I remembered the conversations I had earlier in the day. Dr. Jo’s voice was filling my head. “You need to see his body, Maya. Please. I can walk you through it if you need me to.”

“I can’t do that. I just can’t.” I told her as she listened to me cry.

She told me that I could.

I heard Mr. Sparkly Eyes’ words after I told him what Dr. Jo had said. “I agree with her. You need to see him.”

“But I’m scared,” I told him.

“I know you are, but trust me you need to do this…” I listened to the rest of what he had to say.

Soon, we were seated around a table with a man who worked there and there were no words of “I’m sorry for your loss,” it just turned into a straight business transaction. I felt myself becoming hot and flushed. My normally calm, cool and collected self starting burning with anger and disgust.

I had to protect my father, our family, and this guy was just making all sorts of decisions on our behalf without even asking us a thing.

“Wait, how do you know we are even going to use your services? We haven’t’ decided anything yet except we know we would like him cremated. What are our options? What are your prices? How do we know he’s in the best care with you?”

Fuck. All things I didn’t get to ask with you, Ronan came pouring out like a fucking flood of emotions that I was not capable of controlling.

“Wait, your price is what?! That is outrageous. I have a quote from another place for half of that amount and they will come and pick up my father at no extra cost.”

Thank God for Nana who had taken the time to research some other places.

I got up, left the room, and called the other place. The sweetest lady picked up and listened to me cry on the phone when I told her what the situation was and I told her I wanted to know what my options were with them.

My brother’s girlfriend came to find me and found me huddled on the floor on the phone. “We can’t keep him here! The guy didn’t even say sorry and now he wants to rip us off! I won’t stand for people who pray on people during the worst times in their lives! It’s like he’s trying to sell us a used car! This is my father, not some business transaction!

I’ve only met Uncle Shawn’s girlfriend once before and I’m sure she was like, “Holy fuck my probably future sister-in-law in insane.”

I listened to the lady on the other end as she spoke so kindly about their services with the depth and compassion that I so needed to hear at that time.

I just have one question, “I need to see him before he is cremated. Can I do that at your facility?”

I couldn’t. It wasn’t that kind of fancy place as they strictly are providing the cremation and that is it. I thanked the lady for her time and told her if we didn’t end up using them it was only because I had decided that I needed to see my dad, one last time.

I walked back into the round table of insanity and felt myself slip out of my body as the dude in charge told me he checked with his boss and they would price match the other place that I had gotten my quote from.

I looked up and there was nothing I could do, word vomit everywhere.

“Can I ask you something? How do you do this job? Seriously? How do you wake up and do this everyday? I’m really curious. I just don’t understand how you can just look at dead bodies all day…”

I’m pretty sure Uncle Shawn slumped down in his seat and put his hands in his head. I was no longer of control of the things that came out of my mouth due to the shock, disbelief, regret, sadness, and reminder of you, Ronan that hung in the air. All the things I didn’t do after your body was taken away, mostly because I didn’t know I had options. I could throw up knowing now that you were in a cold morgue for days before you were cremated without me. I should have been there with you. I should have been taking care of you until the very last second. I should have not let them cremate you on your fucking 4th birthday, but I had no idea I had a choice in any of this because nobody fucking informed me.

I was not about to make the same mistakes with my father.

Stay Gold…

 

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http://www.huffingtonpost.com/rainesford-alexandra/staying-gold-world-fights_b_6046890.html

Arizona Foothills Best of the Valley 2014! Get your vote on! Voting ends 11/1/14. Thank you for the nominations and for voting!

http://www.arizonafoothillsmagazine.com/best-of-our-valley-2015/voting/321.html

http://www.arizonafoothillsmagazine.com/best-of-our-valley-2015/voting/324.html

http://www.arizonafoothillsmagazine.com/best-of-our-valley-2015/voting/311.html

Maya and Poppy take NYC

Fashion Show final

Please come and join me for the awesome event that Bloomingdale’s in New York City is putting on for RTF and our friends at Solving Kids’ Cancer. It’s going to be such a fun and inspiring day! If you cannot come, please help us get the word out on this event.  We are pulling kids from the Ronald McDonald House in New York to be our little models! I feel so honored to be a part of this event!!

I love you, New York!

xx

Thank you to all of you

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for helping us be a part of amazing things such as this.  We could not fund these things without you. I am forever grateful for every penny that comes our way.

http://www.eurekalert.org/pub_releases/2014-10/skc-fod100614.php

 

Ronan. I promise I will write soon. So much to tell you. I miss you. I love you. I hope you are safe.

xx

Wow. Who are the bully’s now???

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http://www.myfoxny.com/story/26549430/esb-facebook-review-controversy#.VBjjA2kkM1c.twitter

Dear Empire State Building, Part 16

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Empire State Building,
We, as a community, are not asking you to light up for individual childhood cancers. All we are asking is that you light up Gold to teach to the millions of people that don’t know today that kids get cancer too. When you light up for world cancer day, most of the viewers don’t know that it includes children. People are unaware that children can get cancer as well and when they think world cancer day, they think of adults. By lighting up gold, you represent and show that kids get cancer too. Again, we are not asking for you to light up Gray for brain cancer, even though it is one of the deadliest forms of childhood cancer. We are not asking for orange for leukemia or pink for breast cancer. We are asking for Gold, the color to symbolize ALL CHILDHOOD CANCERS… that is all..

I lost my friend to cancer in 2012. She was 12 years old. I have a current friend now fighting for her life as well. She’s 14. These kids need our help to raise awareness. We have celebrities donating money and time to these kids. We have people working three jobs, taking time to help raise awareness. We have college, high school and elementary school students starting clubs and raising money. All we ask is that one of the most important and well known buildings in the world, light up gold for one of their available nights to show the people who don’t know, that kids get cancer too.

If it is the way we have applied that is what is causing our request to be denied, then please do us the honor of giving instructions on how to apply differently. If you are going to keep denying us the real reason of why you won’t light gold one night in September, than please do not light up for movie promotions and anniversaries of events. You say you won’t light up for those events as well, however you continue to do so. If you are unable to break rules for dying children, why do four teenage animated turtles, get awareness?
Children are fighting for their lives, receiving adult medications for a disease that is under researched because people are unaware. If you wouldn’t give your child an adult size portion of Tylenol, why are we giving them an adult size portion of a toxic, second cancer causing drug as well? We need awareness.
Thank you,
Jenny Formica

  • Instagram is my BFF

    Pearl's ride or die boy for life. #ronan #fucancer #pearlandtdawg #fsu #toddleranddogwithacause 
#nakedpaintingparty #inappropriatepearl #lookatallthefucksshegives #assholeteddy #thatsforeatingherswimsuit Future Graffiti Artist. #ronan #fucancer #thisis2 #nakedpaintingparty #myspiritanimal #fsu #littleartist #toddlerwithacause Childhood cancer getting only 4% of federal funding is something to scream about...so let's put those tantrums to good use! Share a picture of your toddler having their most epic meltdown with the hashtag #ToddlersWithACause to bring awareness to childhood cancer! We're reposting the best ones!
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