Who says you can’t buy love???

Apparently not America. But I do. Especially when kids die from cancer. And there is a Leukemia Drug shortage for our kids out there, who are fighting cancer. Please hold while I go kiss the Urn of my baby boy. Pretty sure some red roses and some diamonds won’t bring him back.

I’ll say it again. Valentine’s Day is for suckers, MOTHER FUCKERS!!!!!!!!! Way to take away from what is really important in this world. Like loving harder than ever before, every single day. How about using the money, spent on Valentine’s Day and finding a cure for childhood cancer instead? How about saving some kids? Sounds like a no brainer to me.

Valentine’s Day spending second only to Christmas

By Andra Bryan Stefanoninews@joplinglobe.com

Who says you can’t buy love?

For Valentine’s Day, Americans will spend an average of $126.03 per person on romance, up 8.5 percent from the 2011 average, according to the National Retail Federation. That’s the largest increase in 10 years. Valentine’s Day is second only to Christmas for consumer spending.

Area businesses, including florists and restaurants, are forecasting big spending this year. Sales are up at the Candy House, with locations in Joplin, Springfield and Redings Mill, and co-owner Pat Hicklin said she is “really hopeful that the recession is lifting.”

“Businesses like ours tend to be a real good gauge of the economy,” she said Monday.

On Monday, the Candy House shipped 600 dozen hand-dipped chocolate strawberries overnight to fill Internet orders. To keep up with demand, Hicklin said, employees began dipping strawberries at 3 a.m. Monday, and they will dip 400 dozen today for walk-in orders on Valentine’s Day.

“It’s wonderful,” said Hicklin, who with her husband, Terry, purchased the longtime candy shop and factory in 1999. “We don’t know what to attribute it to, whether the recession is getting better, or some people have told me they are tired of holding back. They are finally going to buy what they want to buy, hoping for better days.”

Valentine’s Day spending this year is expected to reach $17.6 billion, according to the National Retail Federation. Of that, $4.1 billion will be shelled out for jewelry, $3.5 billion on an evening out, $1.8 billion on flowers and $1.5 billion on candy. Romantic couples also are spending when it comes to Valentine’s Day dinner dates — an average of $146.52, according to restaurant ratings guide Zagat, compared with about $70 for a typical meal for two.

Jeremy Shuey, manager of the Red Onion Cafe in Joplin, said that holds true at his restaurant, which has been booked for reservations on Valentine’s Day for a month. It is one of the restaurant’s biggest nights of the year.

“It continues to be a night couples like to spend time together; it seems like they really want to treat themselves,” Shuey said Monday. “They tend to order fancier menu items, spend more per couple, order a bottle of wine, order high-end steaks.”

Cindy and Elie Riachi splurged on a special Valentine’s Day treat for their children, Daniel and Andrew, a few days early. They spent about $50 on Saturday — a splurge, Cindy Riachi said, as the family doesn’t eat out much.

“I like having the kids do special events with us, as that is why I had them, to spend time with them,” she said.

The National Retail Federation also found that consumers will spend an average of $25.25 on their children, parents or other family members. That’s right in line with what Riachi spent at Target on two Disney movies to give as Valentine’s Day gifts to her boys.

At Dillons Floral in Pittsburg, Kan., florist Carol Hornback reported that six drivers were on the roster Monday, and eight to 10 drivers were scheduled for today.

“Normally we have one or two,” she said during a short break between fielding requests from a line of customers. Florists at Dillons arrived at work an hour earlier than usual on Monday to keep up with demand, and they will arrive two hours early today.

The phones at some other floral shops went unanswered throughout the day Monday — an indication of how busy they were preparing for Valentine’s Day.

A dozen red roses usually cost about $60, according to the Society of American Florists, but on Valentine’s Day most people will pay about $80, the trade group said.

“Here, men are spending anywhere from $25 to $100, or sometimes more, and the majority of orders are roses,” Hornback said.

According to the National Retail Federation survey, men outspend women on the holiday by almost double, shelling out an average of about $169 versus about $86 for women. But they tend to do so at the last minute, making it hard for jeweler Chad Comeau, who owns stores in Pittsburg and Joplin, to gauge sales so far this year.

“We’ve had several buyers in today,” he said Monday. “But in this business, men are the buyers, and they tend to wait until the last minute. Guys are extremely last-minute shoppers.”

RoSweetness.RoMagic.RoLove.RoMazing.

Ronan. Can you even believe the sweet pictures, below? Some little girl, whom we don’t know had her 7th Birthday party today. She wanted to share the RoLove so she did her whole birthday party with you, everywhere. Thank you, sweet dolly Kate and her mommy, Nicole. I feel like I’ve been kissed on my lips by my Robaby himself.

People’s kinds hearts are amazing. And these little girls will grow up to be even more amazing, because of our love baby doll. I am so thankful for the parent’s who are grateful for the lessons they are learning. I am so grateful for parents like this, who understand how lucky they are to have their babes to tuck in and kiss goodnight. I am so thankful for the beauty that WILL come out of this. Your death will not be in vain, Ronan. I will keep spreading our love, everywhere. I am thankful for the beautiful people who are listening. Thank you so much. To ALL of you.

xoxo

Grief! It’s a tricky mo’ fo!

Ronan. Grief is a tricky thing. It’s one of the thousands of things in life that I will never understand because it is that out of my control. I never know when it is going to be an o.k. day., a really bad day, a paralyzing day, a “crazy,” day. I never know who I am waking up to in the mornings, who I am having breakfast with, who I am showering with, who I am folding laundry with, who I am sleeping with. For somebody that has lived with so much consistency in their life for so long, the living this new life of never knowing is exhausting. But I keep rolling with the punches.

Guess what I feel like today? The really bad mama/wife alter ego. Guess what, Ronan. Today, I don’t want to be a mom or wife at all. Try living with that guilt. I never felt like this before losing you. Now, I feel like this all the time. I want to run away and never look back. I want to be alone with my pain. I don’t want the comfort from your daddy or brothers and I don’t want to comfort them. Does that make me evil and a bad person? Because that’s the way it feels. All I want is to take my pain of losing/missing you and run away and keep it to myself. I want to live in the middle of some dark, dreary forest where it rains all of the time and live in a little house, all alone. Just with you and our memories. I don’t want to see our old friends. I want everyone to go away. But you know how this would end if I actually did this? I would end up killing myself. Sylvia Plath style. Her death was so dramatic, yet it was what she wanted and the way she wanted it. I respect that. I’ve always loved that woman.

I think about death all the time. It doesn’t scare me. It didn’t scare you which in turn means that it is something that I don’t get to be afraid of either. When it’s my time, it’s my time. I know that life is too short to sit around an worry about it. So I don’t. I think about it instead. You know what the 2 things that are guaranteed in life, Ronan? Death and this exact moment. Not 10 minutes from now, not 10 hours from now, 10 days from now, or even 10 years. I’m not going to worry about the fucking future when the future is a lie because it is not guaranteed. I am going to worry about this moment. I am going to put some ideas out there and if they happen, great. But if I die before they do, at least I’ll know I put some things out into this world. At least I’ll know, I tried. I’m going to say the things I fucking want to say, and regret NOTHING. As long as I stay true to you and me…… regrets are not going to happen. I’m DONE. Done worrying about what the others out there, think. The others of the world can fuck off. I don’t care who has a fucking problem with my GOD is an ASSHOLE SHIT. If you are going to judge me for that, then you can FUCK OFF too. There is no God out there…. the good and all mighty powerful God who would do this to parents. Who would do this, to you. So judge me all you want. Keep living in your little bubble and lock your doors, so I don’t turn your kids into Satan loving little devils. If you really think this about me, due to what you read, then you don’t know me at all. You are being judgmental and due to that alone, please stay away. You know the kinds of people that I appreciate so much in this life? The parents. The parents who read this, yet they still invite Liam and Quinn over for play dates and they still let their kids come over for play dates at our house. Even if they do not know me that well… they have taken the time to get to know my children and they see two of the kindest, most gentle souls so they know that no matter what I write….. everything is going to be o.k. They trust me; even though they do not really know me. They are the parents, who know I am in agonizing pain, but who let my children be a reflection of me. This means everything to me. Everything, Ronan. I am a good mom. I am a good person. This is my outlet where I can scream, cuss, and cry because I don’t always get to act this way in the real world. In the real world, I tend to remain calm, cool, and collected. In the real world, I keep it together and for the most part, I am able to act like the “normal,” mama under these hellish circumstances. Hell is real alright but all the devils are here. Tell me I am going to HELL and I will never see my child again. This is HELL. I am living in HELL, right now. I know in my heart, that I will see you again, Ro. I know this and this is the only thing I’m answering to in this life.

Today, I don’t even know what I really did. I think I stayed home which may actually become the death of me. I think I could die from the pain alone of being in our house, without hearing the little pitter patter of your feet and the sound of your squeaky voice, yelling for me…. your giggles. The best giggles in the world. I stayed home and played the domestic good little wife roll that is now like nails on chalkboard, but has to be done. I folded a fuckton of laundry. I licked a lot of envelopes. I got a little last minute text message from my newest/oldest yeah I feel like I’ve known you forever friend, but I’ve never actually spent any time with you that said, “Do you need some help with some things?” I said, “YEAH! Do you fold laundry?!” She said she totally did and within the hour she was in my house where we didn’t actually fold laundry, but we licked envelopes and wrote down lists of shit to get done ideas instead. It was a highly unorganized fly by the seat of your pants afternoon where you don’t know what do expect but that’s always how the BEST things, come about. We have lists of a lot of things that have been piling up in my head that I just don’t know what to do with. Things that I am passionate about, getting done. We came up with some new ideas too. We talked about the importance of keeping everything we do in regards to your foundation, true to you. Trust me, Ro. I know how pissed you would be about me throwing an event full of fancy evening gowns and diamonds. Kinda wasn’t your thing. We’ve got some much better ideas in store.

After our productive day of many lists, I picked up this new little friend of mine for dinner. I got to meet her little boy and it was love at first sight. I only got to stay and hang with him for a few minutes but I really wanted to stay and play with him, for hours. I wanted to get lost in his little world and let everything else, slip away. Maybe next time:) Margarita, took me to a really dangerous part of of the hood, for Mexican food. Well, not really but we pretended like it was. It was pretty dangerous having to watch the little blond boy, skip around our table while we were trying to eat. It was pretty dangerous of us to cry over our food and talk about all this “Ronan is in heaven, playing with puppy dogs bullshit.” I’ll say it again, like I always do. I don’t care if this really is the case. The fact of the matter is, you are not with me, like you should be. That in turn, makes everything so wrong. We took our danger crusade to the neighborhood Ross and browsed the aisles of the best infomercial products you could buy, dangerous chemical filled bubble bath, and some of the best ugly dresses I’ve ever seen. Of course we were walking down the aisle full of random nothingness and some little Star Wars action figures were just staring at me. They were all alone, among a bunch of household items. I grabbed them and told, Margarita, I had to buy them for Super Nate. She then goes, “Well they are kind of just sitting there, screaming at you to buy them.” Yes indeed they were. How could I ignore that??? I couldn’t so I took them home with me instead.

I came home to your brothers all curled up on the couch, watching a Pearl Jam documentary on T.V. I snuggled on the couch with Quinn who is still, stuck to me like glue. I mumbled to your daddy that the lead singer of Pearl Jam, Eddie Vedder, was my long lost soul mate in life. He likes to use the word “Fuck,” a lot too and is all about following his heart while breaking the rules. I’ve always been a huge Eddie fan. And the fact that he is such good friends with your favorite, Neil Young is the icing on the cake. I think I need to work on getting those two to do a Rockstar Ronan Rock Concert for you. It’s already on my list, baby boy. I’m going to make it happen. I can see the line up now…….

So, baby boy. Guess what? I have not been taking my Ambien to sleep at night. Guess what I have come to find out. That if I snuggle up in your bed at night, I can actually sleep for hours…. uninterrupted. Last night I dreamed about dolphins all night long. I was in the ocean, holding a baby dolphin and it was so peaceful. No doubt, the baby dolphin was meant to be you. I’ll never forget our summer and how the dolphins would just appear every single time I went out to the beach. I know that was you, letting me know you are around. So last night, I slept in your bed and dreamt of all things peaceful. I cannot remember the last time that has happened. Thank you for that. It’s early and I need to get moving this morning. I miss you. I love you. I hope you are safe.

xoxo

Dear Lovely Little Blog Readers,

I am putting this out into this big, beautiful world that I know exists. If anybody knows of any office space that may be available free of charge…. I so need it. I cannot continue to run this foundation out of my house, alone. It’s too quiet. It’s too sad. And his room, full of his toys is just down the hall from my dining room where I often sit, crying, trying to get things done. Yesterday, my friend came over to help me stuff envelopes and pointed out that me sitting at home, doing these things alone was not healthy. I knew this, but I never thought to ask for anything else because this is just the way it has to be. She quietly told me that I should look around to see if anyone has any empty office space they want to let me use. I would be a really good, quiet tenant. I am really super clean and I smell good, so I have those two things going for me. I don’t really run around screaming obscenities unless provoked so for the most part, I’m a calm collected girl. I have really good references if you need them;) If anybody knows of anything, can you email me at mayawoody@gmail.com. But I don’t want to pay rent. I don’t want any overhead. I would never feel right about taking money out of Ronan’s Foundation, to run things/advertise/etc….. I am not using his money, this way. So if anybody, just has some empty space they know about…. that is just sitting; I’m your girl. I would be SO thankful. I may not end up like Sylvia Plath; with my head in the oven.

Thanks lovies. Oh yeah. Space needs to be in AZ:) I mean Transylvania would be awesome… but the Phoenix area is more realistic.

Since I don’t drink…. do you think I can drink myself to death on Coconut Water? Preferably Vita Coco, pineapple flavor. Thx baby doll.

http://youtu.be/SoHV229_DQM

 

 

 

You is kind. You is smart. You is important.

Ro baby. I played musical beds last night as I fought off the Ambien sleep. I won. I fell asleep for about 10 minutes in our bed and then woke up, in a panic because I cannot remember the last time I have seen the stuffed animal, Gary, that I bought for you over Christmas. I said to your daddy, “Where is Gary?!” He was too deep in a sleep to wake up to help me so I just let him be. I didn’t find Gary and it’s driving me nuts. I keep pretending you hid him somewhere. Such a silly thing to be upset about but it is important to me. I ended up crawling into Liam’s top bunk bed, where both of your brothers were curled up together. I tried to lay there with them for a while and I was hoping to fall asleep. I didn’t. It was too crowded so I got up and went into your room. I grabbed the big, warm, cozy blanket that you died on (I cannot believe I even have to say those words) and draped it around my body and crawled into your extra cold bed with your Master Yoda’s and sock monkey friends. They kept me warm and I finally fell asleep around 3 a.m. I woke up today, sad like I do everyday but I forced myself to leave the house as I knew staying at home again, for the 3rd day in a row was not going to be good for me. I went to my Starbucks office instead and continued to address the thank you cards that I am working on getting sent out.

I got a pep talk today. One from your favorite lovie that always knows how to cheer me up. A pep talk that was very much needed as it’s always during these pep talks that I am reminded that I am going to be o.k. but sometimes I just need to hear it from your lovie, whom I trust more than anyone. The lovie that is connected to your soul which in turn, always makes me feel close to you. Words of our conversation float through my mind, all jumbled about.
Me: “I’m not going to be o.k. I found his hair. I miss him. I want him back. I’m bitter and the world is too bright.” Tears start to form.
Lovie: “Heyheyhey. Stop. Look at me. You are hurting. You are hurting in the worst way possible. Who told you, you are bitter? Don’t listen to those assholes. I know bitter. Bitter is not something you develop over something like this. Bitter is something a person always has. You don’t have a bitter bone in your body. You are the kindest, most gentle soul that I’ve ever known. Stop listening to other people. You are kind. You are beautiful. You are the beautiful little broken bird whose wings have been clipped and you are trying to fly again. You will fly again, I promise. He was the most amazing kid, wasn’t he? I’ve never met a kid like him before. I’ve never met a mom like you, either. You are such a handful. And fuck cancer.”
I felt like I was in the movie, “The Help,” as that scene kept playing in my head. The one where the woman tells the little girl, “You is good. You is kind. You is important.” Those are the words I kept hearing over and over. After my week of grief hell, those words were exactly what I needed to hear today. They got me through the day. They will get me though this life. They have carried me this far. I can’t even think of where I would be, without them.
My tears stopped. “He was amazing, wasn’t he.” I felt myself smile.

“There’s that smile. And not the bullshit one. You are going to be o.k. I promise.”

Picked up. Dug out of my hole. Again. I’m back standing on both feet for now.
I know you know one of the biggest gifts you have given to me. One of the biggest gifts that I do not think I would be here without. Actually, I’m quite sure I would not be here, if this person did not exist. The one person that can always hold me up, pick me up, drag me by my hair, up off of the ground no matter how heavy my grief may be. The only person I really listen to in this life, besides you. My other greatest teacher in life. I am thankful every second of my life for this gift you’ve left behind. Every second, Ronan.
Your Romom, Tricia, tracked me down. It’s been a long time coming. She begged me to go hiking with her. I told her no at first. I told her she was going to have to drag me out of the house. She didn’t have to drag me. I went the top of Camelback with her. It’s been a long time since we attended church together. I’ve missed it so much. I’ve missed her too. We did a lot of yelling at each other. We did a lot of crying on the way down the mountain. I’m pretty sure the people we were passing were thinking… “What are these girls so upset about? What stupid drama!” If only it had been just stupid girl drama. If only the reason for our sadness/hurt/tears wasn’t because we are both left in this world, without you and neither of us knows what to do or how to be; because everything hurts too much. Lots of things are broken now, Ronan. So many things are broken. But I can see they are slowly being fixed. The one’s who are meant to stay in our lives, will stay. The one’s who love us the most, won’t leave forever. They will always be here. Even when all I do is push away. They are the ones who know me. Who love me. Who believe in me. Who don’t judge me. Who don’t judge how we are “handling,” our situation as if there is even a right way to do this. I know they want to fix me, but also know they have to respect my time and my space. And they also trust me enough to know only I can fix myself. So they just stand back and silently love me. I always know this. It’s called true love. It’s called compassion. And I am so thankful for the gentleness.
At the end of the day, no matter what I write on here, no matter who I tell to fuck off…. all you have to do is look in my eyes to see the pain and love that fills my entire body. How can anyone look me in my eyes, and judge??? I am just a mom. A mom who loved a little boy, more then this entire world. A little boy who I spent 4 years with. A little boy who I spent 8 months with fighting cancer. A little boy who wasn’t supposed to die, but did and now I have to live with that guilt/shame/sadness for the rest of my life. Do you know what that feels like for a mom? No. You can’t possibly. You didn’t have him, the way I did. You didn’t love him, the way I did. Nobody can understand what that is like. Nobody can understand the bond I had with him. Nobody can understand the pain I feel from losing him. You cannot even come close to trying to understand this, no matter how much you love your kids. No matter what losses you have suffered. Why isn’t the fact that I am here, following my heart, and continuing to fight for you, Ro…. for me…. for your brothers…. for our family…. enough? Nobody hurts more then me. Even your daddy knows this. I am sure I have done a thousand things wrong, said the wrong things, made mistakes…. but these are my mistakes to make. I will make them for the rest of my life. At the end of the day, I have to look myself in the mirror and just know that I am doing all that I am capable of doing. I know that this is not the way that most people would choose to deal with this but as I’ve said before….. just because it is not their way…. why do others think they have the right to judge my way? Especially if they’ve never been through this kind of hell. Nobody knows how they would act or what they would do, until you are put into this situation. Judging me is just cruel. It’s so passive aggressive. It’s just plain cold hearted and mean. Please stop. If you don’t like what I’m saying, because it’s too sad…. just stop reading. Because I’m not going to stop writing. I am staying true to myself and if that seems selfish than so be it. All I can do is listen to the little Rovoice in my head and what my heart is telling me to do. I am nothing. I am nothing without Ronan. I am aware of this. I am not even a fucking human being anymore. I don’t know who I am or what I am doing and I am trying to figure this out, day by day. I am learning to live in the moment because the moment is the only thing guaranteed in this life. Nothing more. Nothing less. Hopefully someday, enough.
Things have been o.k. the past couple of days. I gave into the super sad sadness that I was needing to let out during the week. I’ve been doing just o.k. this weekend. Just o.k. is as good as it gets for now. And I’m o.k. with that. I’ve been sleeping better, without the Ambien. I’ve been sleeping in your bed which I have found, brings me comfort. Even though it makes me so sad, it makes me feel close to you too.

I love you so much. I miss you. I hope you are safe. G’nite sweet boy.

xoxo

Vegas on crack

;

Ronan. Is the picture above, sad? Because I wept just seeing it. It tells the story of everything that is wrong in this life, because you are gone. It tells the story of everything that should be, but is not. At least to me it does. Is everything sad? Because I can’t seem to stop crying. Is this because I spent much of my time in New York, not crying? I went days there, without crying. Now back here, I cannot seem to stop. I took my Ambien to go to sleep last night. Fucking Fuck. I just wanted to 6 solid hours of sleep without tossing and turning. Is that too much to ask? I woke up today, feeling rested. I thought it was going to be an o.k. day. I was wrong. I spent the morning being productive, trying to get some thank you cards addressed. It seems like I am drowning in them. I have to get them sent out. I hope there are not people out there, who think I am not thankful for all they have done, big and small. Nothing goes unnoticed. As I was addressing the envelopes, I thought to myself…. I really don’t recognize any of these names. Who are all of these selfless people, who love you so much that they wanted to help us in our darkest hours? Strangers? Long lost friends? Acquaintances? Is does not matter because they are all united by you so that makes me love them all, even if I may not know their faces. I feel like I know their hearts and they are beautiful.

I’m not sure what happened the rest of the day except I didn’t leave the house. I could easily become a hermit and I have decided I have developed Agoraphobia. Well, at least that is the way I felt today. I felt afraid of the world but hey…. that’s not right because I’m not supposed to be scared of anything. Today, I felt scared. Today, it seemed too bright outside to venture anywhere at all. So I didn’t. Do you know what the outside world looks like to me on most days? Las Vegas, on crack. Everything is so bright, that it hurts. Everything looks so fake and plastic. Everything feels like an illusion and a dream. Maybe I should move to Alaska where the sun doesn’t shine so much. I have a feeling my zombie self would do just fine there. I didn’t pick up the phone either, even though it kept ringing and my text messages, kept dinging. I was in the zone of cleaning out my jewelry drawer and I knew what I was going to find even though I wasn’t looking for it. The ziploc baggie that contains your hair. Your beautiful hair that I had saved when we shaved your head. I opened the baggie, felt your soft hair, and wept. In the middle of my crying, my doorbell rang. I threw on my big, chucky sweater and went to answer it. It was Mandy Bee and she was tired of me ignoring the phone and her. And she was worried. I let her in and let her hold me while I sobbed in her arms. I had the ziploc baggie of your hair in my hands. We sat on the couch and she tried to get me to leave with her. I told her I couldn’t go anywhere except for I had to meet your daddy at Dr. Rachels. I told her I needed to try to make myself look less like a zombie for that. She stayed with me as I somehow managed to throw on some mascara and take my hair out of it’s wet mop on top of my head. I totally had good intentions of leaving the house today, early on. I showered in the morning but I just couldn’t seem to manage much more than that.

Mandy Bee picked up your brothers at school for me. She brought them back to our house for a little playdate with her boys. She also insisted that she was taking me to dinner tonight. I told her no. I tried every excuse I could use, to get out of it. She wasn’t taking no for an answer. Your daddy took your brothers to play basketball. I headed out into the dark for a run. Mandy called me halfway through my run to tell me she was on her way to pick me up. That girl is so persistent. I finished my run just in time to hop in the shower before Mandy came to kidnap me. I answered the door and told Mandy I could not go anywhere that sweats/no makeup/ glasses on/wet hair up in a bun/chunky sweater/red eyes were not allowed. I also told her I could not eat because I had been throwing up all day. She totally pretended like she was agreeing to everything I was saying, but we ended up at True Foods anyway were I proceeded to eat a little something for her. I ate. I sat. We talked. I was glad I went out with her for the hour that I did. I needed the little shove that she gave me. I hope tomorrow is better. There has been a lot of screaming voices in my head again and they have not been saying very nice things. They are making me tired, restless, and exhausted. It’s obvious the grief grim reaper/inferno fuckwad Bob is back with a vengeance. I’ve been trying to let myself just be true to what I have felt the past couple of days. I have tried to be respectful of the way I am feeling by not forcing anything else. I am learning that grief comes in waves. It will never be a steady uphill process. I know I can get knocked back down, at anytime and it often feels like I am starting all over at square one. There is no rhyme or reason to this…. it’s just the way this grief thing works; for me at least. Everyone is different. All I can do it be patient and surrender to the way I am feeling, at this moment in time. One foot in front of the other as they say. Or two-steps backwards to go off the beaten path to an unknown destination. Nothing is guaranteed in life; especially not now. All I can do is keep trying to survive, one day at a time.

I love you. I miss you. I hope you are safe. Sweet dreams little man. I love you to the moon and back.

xoxo

Ava Holder

  • Dear Lovely Little Blog Readers,

    I’ve had the chance to meet Ava and her mom, Chrisie, a few times. I have looked this little girl in the eyes and I have seen the fire that exists. She has endured so much and continues to fight like a rockstar. Ava’s family needs help as they start a new treatment in Texas as they have been left with no other options. Please take the time to read the letter written by Ava’s Grandmother below. If there is anything you can do, no matter how big or small, it would help so much. Please keep this little girl in your thoughts, prayers, or whatever it is you choose to do. Please take the time, to remember how lucky you are to have your babies safe and healthy. Please stop and cherish every single second you have with them. I’ll be talking to Ro today and asking him to watch over Ava and help her in any way he can.

    I love you all so much. Thank you for your endless love and support. Thank you for being grateful. Thank you for being the best version of yourself, that Ronan would give anything to be.

    Dear Friends and Family,
    I am writing this letter on behalf of my granddaughter, Ava Holder, who as many of you know is battling cancer. This February marks the 3rd anniversary of Ava’s diagnosis of Stage 4 High-Risk Neuroblastoma. Over the last 1,095 days Ava has had huge obstacles to overcome. Ava has never had a break in her treatment – it has been a constant for our family. It is remarkable that Ava has survived this disease and her treatments to this point. We were not sure Ava would make it to her 2nd birthday. Ava has relapsed in her brain 3 times and in her body several times. Ava is currently in the fight of her life with an inoperable brain tumor and a tumor on her pelvis.

    Doctors have given Ava limited treatment options as she has had her maximum amount of radiation and 17 cycles of high dose chemo which has required 2 stem cell rescues, 5 tumors removed from her brain, and 1 major resection surgery in her abdomen. Despite all this Ava is a vibrant four and a half year old who loves to ride her bike, play dress up, and most of all loves her big brother Eli. Ava looks forward to the future and has dreams to one day become a doctor and help kids just like her.

    Ava has never given up her fight and neither has her family. This February Ava with her family will travel to Houston, Texas where they will embark on an experimental trial that involves chemotherapy and a vaccine treatment. The year long trial consists of traveling to Houston every 2 weeks for the vaccine. The expense incurred over the next year will include airline travel, lodging, ground transportation, meals, and various medical expenses and copays plus any unforeseen costs. Total monthly costs are expected to exceed $2,000. These costs will be incurred every month for a year. Many of you have asked what you can do to help. Having a child with cancer is stressful. It takes it’s daily toll on you physically, emotionally and financially. Chrisie and Nick are so strong and have always handled the situation with such grace and dignity. They would never complain or ask for help themselves which is why I’m reaching out for them and my granddaughter.

    The expenses of associated costs surrounding Ava’s treatments will add up quickly. We have seen our friends and family come together in the past to help Ava but continue to be asked what can be done to help now. So I ask you, our friends and family, to assist financially Ava’s family with current travel and medical expenses. Any contribution is welcomed, no amount is too small.

    Thank you for your continued support and love. Please share this letter with others who have the ability to support Ava. Family updates can be viewed at:
    www.caringbridge.org/visit/avaholder

    All checks can be made payable to Ava’s parents. Chrisie and Nick have set up a savings account dedicated to Ava’s medical/travel expenses.

    Nick and Chrisie Funari
    18036 N 93rd Street
    Scottsdale AZ 85255

    With Great Love and Hope,

    Bruce and Sharon Elliasen
    Cell#602-432-2962

  • www.caringbridge.org

    Through CaringBridge, you can be a part of Ava’s health journey by reading updates, viewing photos and leaving messages of love, hope and compassion in the guestbook. Your support will mean the world to Ava.

A Bed of Fire

Ronan. I swear time stood still today. I knew that reality was going to come crashing down hard after the New York fuckeverythingimabadass high came to a halt. Yeah it did and it hurts. I knew I was in for it when I wrestled with my sleep all last night. I fought the devil aka, Ambien last night and won, but my sleep suffered. I was really trying hard to unwind last night, but of course my mind was racing. I have such a hard time being in our bed where you and I spent so much time while you were sick. I often feel like I am laying in a bed of fire. Just as I was settling down, I realized that I had left your GiGi in my car. FUCK. It was late but all I could think to myself was you have to get up and go and get Ronan’s GiGi. You are such a bad mom if you don’t. He could never sleep without it and now you have to take care of it for him. I got up, threw on my most favorite big, chunky hospital sweater that I used to wear with you, and ran outside to get your blanket. I thought that would help me go to sleep. It didn’t. I came back to bed and tossed and turned. Your daddy woke up and tried to get me to settle down. I usually want to punch him for being able to fall asleep so easily and peacefully. I didn’t want to punch him last night. I was just really sad. I got up and went to check on Liam and Quinn. They were both snuggled up on Quinn’s bottom bunk bed together. I crawled up in the top bunk bed where Liam usually sleeps. It was about 3:30 a.m……. my witching hour around here because that is when you passed away. I fell into somewhat of a sleep and dreamed only dreams of myself, fighting with everyone I love. I woke up to hearing your brothers get up and into the shower. Quinn crawled up to give me a kiss good morning. I got up, felt groggy and knew due to my lack of sleep that it was going to be a really hard day. Hard day was an understatement. A hard day would have been welcomed. I’ll never know what a hard day in the normal world feels like again. Days like today are absolute hell. I tried to be productive. I made of list of random things that I needed to get done. I did most of them and checked them off. Checking things off on a list usually makes me feel better. Not today. But I suffered through this day, solo, ignoring everyone’s phone calls. Less and less people call now and that’s o.k. I wouldn’t pick up anyway. I went to pick up Liam and Quinn from school and as I was waiting, I was staring out the window with tears pouring down my cheeks. I decided to check the comment part of this blog which I try to keep up on, but sometimes I get overwhelmed by reading them. I appreciate them all, so please continue to write them. It’s on days like today, that they really do help. Somebody posted this and it was so beautifully written that I just had to post it on here tonight. Thanks Leslie.

Grief has dropped a bomb in your life. You are shattered, blasted, blown apart and all but nearly destroyed. Amongst the shards, amongst the debris, you live. You don’t know how. You can’t see. You can do nothing but feel the pain that is within you and around you. You don’t understand, you will never understand. You lay down amongst the rubble for you can do nothing else and you cry, like you have never cried in your life before and you think why me, why this, why RO?
And somehow without knowing how you uncurl yourself and brush yet more tears from your face and you walk. You begin to pick up a shard, a broken piece of your life here and a broken piece there. They don’t fit together anymore, they can’t. There is no going back to what once was. And as each tiny fragment begins to shape itself anew, so do you. Your shape is a stranger to you now and to everyone else. Your pieces have become you. They speak of your strength, of your courage and they speak of you, the vulnerable you, the broken you, the loving you and the wonderful you.

Love is never lost, always in your heart and soul, right where Ro is…

I cried harder when I read those words though. It makes me think that there are strangers out there, who kind of get this. Leslie got it today and I was thankful for that. Once I grabbed your brothers from school, we came home and did their homework. It was all I could do to muster up the energy to help them. I retreated to our bedroom and laid down with Quinny who fell asleep before basketball practice. I didn’t sleep with him, but I held him as he slept and I cried. Your daddy came and woke Quinn up as it was time for basketball practice. I stayed home as I swear I was paralyzed with grief today. After everyone got home from basketball practice, Liam was begging to go back out to the Village to play some more basketball so your daddy took him. Quinn stayed home with me. At one point, we were in the kitchen. He looked at me and asked me why my eyes were so red. I just said to him that I had been crying. He asked why. I said, “I just miss Ronan. Why else would I be crying?” He looked sad and told me he loved me. We went into the bedroom and I asked him if it was o.k. if we watched a movie. He said o.k. We put on, “The Help.” So, I’m not a good judge of much things anymore, because everything seems so sad to me and I cry over everything…..but was that movie, really, really, sad??? And also, insanely good??? I think I cried though almost all of it all while I explained to your 8-year-old brother, the cruel ways of the world. Especially the past. But I also explained to him the beauty that can come from fighting hard for something you believe in, no matter how wrong people tell you, you are. He watched the movie with wide eyes and asked questions the entire way though as he was really wanting to understand it. He didn’t understand what the KKK was or why anybody would want to hurt another person over the color of their skin. He soaked up everything about that movie tonight and told me he really liked it. He also told me he thinks Emma Stone is really pretty because she doesn’t look like everyone else and looking different, is pretty. Ummmm….. hello little Casanova. Some girl, is going to be really, really, lucky someday. He is such a wise little soul. Liam is too. So were you. I think it’s something you were all 3 born with…. this deep, soulful spirit. Thinking about this, made me smile through my tears tonight but it didn’t stop them from falling.

I’m just sad. And tired. And sorry. So very sorry. I miss you so much. I hope you are safe. I still can’t believe I couldn’t save you. I still think this is all my fault. I’ll spend the rest of my life trying to fix this but no matter what I do, this will never be better because you are gone and all I want is you back. I love you monkey boy. G’nite. Sweet dreams. I love you so much.

xoxo