May, May go away. Do not come again another day.

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Ronan.  May is officially here and I’m trying my best not to go into freak out mode.  You know what is coming up and it never gets easier.  May 9th will be 3 years without you and May 12th will be your 7th birthday.  Not to mention Mother’s Day, the day we had your funeral, the day you were cremated, which also happens to be on your birthday.  It’s all these fucked up dates that I wish didn’t exist, but they do and there is no escaping them.  I will come up with some sort of plan to get through the days like I always do and luckily I know we will be with some of my most favorite people, so hopefully that will help ease the pain just a bit, but every part of me remembers the pain of these dates.

I don’t even know what has happened since the last time I have written.  My days are filled with all things Poppy and that is about it.  I have really taken a step back from everything in life because for the past year, I just really needed to get lost in her and that is exactly what I have been doing.  She deserved that, Ronan and frankly, so did I.  I needed to just take this time and soak up all of her innocence, sweetness, and truly get to know my baby girl.  Poppy doesn’t have a lovie or a blanket that she is attached to when she sleeps like you did because you know what she uses instead? Me. I have not put her in her crib once to sleep, not even for a nap.  I rock her, lay her down in bed with me and listen to her as she hums and plays with the necklace that sweet Mrs. Martin gave to me when Poppy was born. It’s just the letter, “P” and she falls asleep every day and every night by holding on to me and my necklace.  That is how attached we have become and I wouldn’t have it any other way.  I cannot imagine doing this life without you AND without her.  I don’t know what I would have done had we had not had another baby.  She brings about me a calmness that has been missing for so long.

It did happen the other day though.  The thing I knew was going to happen sooner or later; I am just surprised it happened while she is so young.  It was about a week after her first birthday and I was laying her down to change her on your bed.  We have that huge picture of you hanging over your bed and as I was putting a new diaper on her she looked over at your picture, pointed and goes “Ro Ro.”

I almost fell over.  I truly thought I was hearing things so I said, “What did you say?” She looked at me, pointed to the picture and goes, “Ro Ro. Brotha. Brotha Ro Ro Ro.” She motioned for me to pick her up and take her over to your picture so I did and she planted a big fat kiss on your little lips.  The tears started pouring down my cheeks and I had such a mixed reaction of total euphoria and wanting to run kicking and screaming out of our house.  It took me a few minutes to decide what it is that I was going to do.  Was I going to run away or just take a deep breath and embrace this moment of pure fucking amazingness that can only be explained as Poppy knows things that are not from this world?  She can’t even say Liam or Quinn’s name yet and the fact that she not only said your name, but knows who you are from a picture makes my heart go a million miles a minute.  As soon as Quinn and Liam got home, I grabbed Poppy and took them into your room.  I said, “Watch this.  Poppy, who is that on the picture?” as I pointed to you.  She goes, “Ro Ro.” Quinn started giggling uncontrollably and Liam didn’t quite know what to do.  “She just said, Ro Ro! Mom! Did you hear that?!” Quinn was jumping around with such excitement.

It’s been non-stop since that started a few weeks ago.  All day long all I hear, besides her barking like a dog is “Ro Ro Ro Ro. Brotha Ro Ro.” She is usually walking around carrying a picture of you, kisses it, and goes back to playing with something else.  She also studies the picture frame you are in like crazy, trying her best to open it.  It’s like she’s saying, “I know if I get this open, I can get him out and he can come and play with me.” I truly think that is what she thinks.  Oh, how I wish this were true.  I’m torn between loving all of this so much to sometimes it makes me sick.  As I said to your Sparkly the other day, “I’m going to break Poppy’s heart one day when I have to explain to her where Ronan is and what happened to him.  I don’t want to break her heart. How am I going to look my daughter in the eyes and have that conversation with her?” The thought of it makes me want to vomit all over the floor.  Why the fuck can’t her first heartbreak be over some asshole guy she will date when she is 16? Not over her beautiful brother that would have loved her so much, taken such good care of her and beat up the fuckwad who broke her heart? I like that story much better than the one I’m going to have to tell her.

I think I have to go now, Ro. Much more to say as always but my eyes are burning and bed is calling my name.  I’m forever sorry it is this way.  I miss you.  I love you.  I hope you are safe.

xoxo

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Hellllooo June! Nice to see you!


It’s not the critic who counts

It’s not the critic who counts,
not the man who points out
how the strong man stumbles
or where the doer of deeds
could have done them better.

The credit belongs to the man
who is actually in the arena,
whose face is marred
by dust and sweat and blood,
who strives valiantly,
who errs and comes short
again and again because
there is no effort without
error and shortcomings,
who knows the great devotion,
who spends himself in a worthy cause,
who at best knows in the end the high achievement of triumph
and who at worst, if he fails while daring greatly,
knows his place shall never be with those timid and cold souls
who know neither victory nor defeat.

– Theodore Roosevelt, 26th US President

My marathon is Sunday. As in, this Sunday. I stuck by my words and did not train at all. I did a few runs, here and there. But in no way shape or form, did I train for this marathon. I saw an opportunity, and I ran with it. I wanted to raise enough money, to help fund Dr. Mosse’s trial at CHOP. I did not want to have to throw a normal fundraiser, to do this. I took this on as a personal challenge to myself, to see if I could actually get this done. I did it. We raised enough money, in just a few short weeks, to do this. It was a lot of money. I am over the moon about succeeding. None of this would not have happened, without all of you. All of you who believe in me, so much, that you donated what you could donate. Whether it was 1 dollar, or 5k…. the bottom line is, I have a world of support surrounding me that will continue to help me move these mountains. The impossible will be done because I have the most amazing group of people, supporting me at all times. This would not exist without this blog. This is what makes every backlash, every “you are doing the wrong things,” the “stop putting all of this out there,” SO WORTH IT. It is so beyond worth it. I always said Ronan’s Foundation is not here to be conventional and like every other foundation out there. There are some amazing ones out there, do not get me wrong…. but I know Ronan’s will be different. Ronan’s is his and mine and nobody is going to take this story away from us. May the bridges I burn, light the way to something else so extraordinary, that the normal human in the box thinker, cannot even see yet. I can see it. I’ve always been able to see it. My eyes are Ronan’s eyes. I see everything through my child’s eyes, and today, they are not blurry. Today, my soul is on fire. Today, I am so proud of who I am, who I am becoming, and who I hope to achieve to be. I am proud of all of my mistakes as they are my mistakes to make and I try my best to learn from them. To grow from them and they help me cut to the chase with a lot of bullshit in life that I am just not dealing with anymore. I am thankful to my parents for giving me the gift of an open mind and an open heart. I learned all of those things, from them. Now, all I have to do is run this marathon and finish this marathon. I am going to try my hardest and try my best. I will finish. It is going to be ugly, but I will finish. No matter how bad my time, sucks. All I care about is crossing that finish line and making you all proud. This is a also a personal test to myself. If I can do this, I can do anything I set my mind to. I am going to run the entire marathon thinking about Ronan. About our love and our loss. About how this is all for him and always will be. I have no doubt this marathon will be filled with so much pain, determination, courage, strength and fire… that it can and will be achieved. I do not doubt my heart at all. I will not only carry Ronan with me, but all of the other babes I now know and love. Ava will be heavy on my mind as well as a sweet little girl named Charlotte Rose Kelly, who passed away from Neuroblastoma as well. Her mom reached out to me and sent a very generous donation to help us fund Dr. Mosse’s trial. She says I give her strength with my words. Once again, this would not happen without this blog. I am so thankful for you, Patrice. That you are able to see my light in the darkness of all of this. I will run extra hard on Sunday, thinking of you and your sweet baby girl. I am so sorry that you know what this pain and my tears feel like. I wish it was not this way, for any of us.

I knew that the first thing that I was going to fund was going to go to Dr. Mosse. Your daddy asked if I was sure about this because there are a lot of people that need support and money for research. I looked your daddy in the eyes and said to him, “Without a doubt, 110% this is who this money is going to.” It is the least I can do for her. This is not about just the research for me. This goes much deeper than that. This is about a person, who had a very hard job to do, in telling 2 parents that there was nothing that could be done for you, Ronan. This is about a person, that had the courage, grace, compassion, and dignity to look us in the eyes and tell us how truly sorry she was. This to me, Ronan, is PRICELESS. I am doing this for her, because of what she did for us. Although, she never had the privilege of taking care of you, she took care of me in the only way she could have, instead. By giving me the gift of looking me in the eye. I will always be so thankful for that. So, Sunday is going to be here before I know it. I am not running in a new pair of shoes. I will wear the purple one’s that I always wore, with you. I will wear my NYC Yankees hat, because it is always what I wore, with you. Those 2 things have been with me though out your treatment and after. I will never throw them away although my purple pumped up kicks have seen better days. I am not running in anything else. I know you will be there with me, pushing me when my body is ready to give up and quit. I am going to need you, little one.

I just wanted to say thank you to everyone who donated and made this possible. This could not have happened, without you. Thank you for not giving up on me no matter how many times I have “offended,” you. Thank you for being able to see past that and finding it in your hearts to see beyond the things that may appear on the surface. Thank you for not forgetting that this is about a sick little boy, who never hurt a fly and did not deserve any of this. Who could be angry at a child and turn away from that due to words that I may write? Take my words away and if you can still picture Ronan’s face and are filled with anger or disappointment due to the things that I have said, then I freaking feel sorry for you. I don’t want your support anyway. Go give it to some other charity like “Save the Unicorns of the World.” Because that right there, will cure childhood cancer. This is about something so much bigger than my words. This is about a life of a child that deserved better. This is about the life of all of the other babies, kids, and teenagers who are diagnosed and will fight cancer while everybody else, tries to looks the other way. This is about awareness. I must be doing something right if I have almost 2.7 million hits on this blog. I have to think that most of you, are still here because you believe in good over evil. Because as I have often said before, there will be beauty that comes of this. No matter how ugly it may get. If you are still with me, I thank you so much for not looking the other way. I thank you for being brave enough to laugh with me, cry with me, scream with me, get mad at me; but you still find it in your hearts to never give up on this story and to never give up on Ronan. I love you all. See you on Sunday, 26.2!

P.S. That quote above was sent to me today, by one of my former lovies of the month, Kassie. I think I will print it out, and read it every freaking day. Thanks, Kass. Once again, I would not know this kind soul, without this blog. I will never regret any backlash because all of the beauty that has come from this, so outweighs it all.

xoxo

A death day and a birthday

 

 

 

Ronan. May 9th came and went. It was a gut wrenchingly hard day. I did my best. I did all I could do. I did not die. It was a rainy day, as it should have been. I got up, showered, dressed. I went and had lunch with your daddy and brothers on this awful, awful day. We had planned a day of hiking. Just as we finished lunch, your purple balloons arrived. 5 of them. Sent by the most thoughtful board members and little intern on the planet. The one’s who put so much thought and effort into sending us off, on this trip, that we have had gifts to open every single day that we have been gone. All things inspired by you. Things that have made us laugh, be silly, and wild and free. Things that have made us cry, like the 5 purple balloons. Who thinks to have purple balloons sent to our hotel, so we can let them go for you because they know we are in a small town, and wouldn’t be able to find them anywhere? My board members. My intern. My sisters. My family. This is why they are the one’s I trusted with your candy cart for Phoenix Children’s Hospital for your birthday. This is why they sit on your foundation board. Because they know this is not just business. This is about unconditional love, thoughtfulness, and helping when help is needed most. They know this without me having to say a word. This Ronan, is the truest form of unconditional love. This Ronan, is why after all of this, I still think I am lucky and blessed. So very blessed even without you. I know these little blessings are all gifts from you, to keep me going. Thank you so much. I don’t know what I would do without them.

After lunch, I grabbed the 5 purple balloons and hugged the front desk girl and told her thank you with tears streaming down my cheeks. One of my lovely little board members, filled her in on the reason for our “vacation.” She knew the reason for us being there. She looked at me and said, “You are welcome. Please, let me know if you need anything.” I told her I would. We headed out for our hike. We drove to somewhere that was recommended to us. I let your daddy navigate and take us to our destination. I sat, numb, and totally zoned out. I tried to let myself get lost in the beauty around us, but it was impossible to take me away from the world I live in, without you. Once we arrived, we scoped out the trails. We ran through the woods down towards the water. I carried your 5 balloons. We all stood together and each of us, took a purple balloon. Your daddy and I held yours, together. We let them go and watched them float away. We clung on to each other, and I buried my head into your daddy’s shoulders. We stayed that way for a while. Your brothers didn’t really know what to do as they seem to be pretty unfazed by everything that is going on around us. As 8 year olds should be. We went on a long hike through the woods. Every stick I saw, ever rocked I threw, every mud puddle I stepped in, was a slap in the face to me. It hurt, so much. It is so wrong that you are not here, running through that forest, with your brothers like you should have been. You would have loved every second of our family hike. It was the most exhausting hike of my life. It wasn’t physically hard. It was the mental part that I struggled with. Hiking on the day that you died, because you died, because nobody knew what else to do. Talk about a mind fuck of a day.

I heard about the storm in Phoenix on your death day, Ro. A spicy storm on May 9th that could have only been caused by you. I have no doubt about that. I loved hearing all about your storm. Nobody could believe it. The people that love you the most, could. You made it pour down on me, in Maine, and you proved your point with your spicy little storm in Phoenix as well. You are such a little badass.

I don’t remember the rest of the day or night. All I know is I went to sleep, exhausted. No Ambien needed. I have not taken that, since the first night we were on our trip. I have slept alright without it.

I have been so preoccupied with your death day, that it is as if your birthday has come up from nowhere and knocked me down so hard on my ass, that today, I did not know if I could get up. I did. I mustered up the energy to go out for a while to explore our new surroundings as we switched locations last night. A new destination was a good change of pace. We explored for a few hours and then headed back to our hotel. I had a raging headache probably due to all the crying I had done. I crawled in bed while your brothers played outside and your daddy worked. I needed to just shut down for a couple of hours, so I did. I got up when I got a text message from one of our lovies here. She was close by our little town and came by to see us. The two of us went out and grabbed a quick bite to eat. She knew I was having a hard day. She knows first hand, all too well about this life. We quietly talked about all things that two mom’s should never have to talk about. Kids getting cancer. Kids dying from cancer. The how’s, the why’s, the unfairness of it all. I spent the hour at dinner, looking across the table at my friend who has the same eyes as mine. One’s filled with so much pain, that it is palpable. But there is a fire there, too. I see her son, in her eyes, every time I look into them. It gives me strength. I left her still feeling pretty sad, but feeling better about your upcoming birthday. I left there, feeling like I could get through tomorrow, without you.

I came out of the restaurant and I had 16 text messages on my phone. FUCK. I had forgotten about the little insane text message party I had with Rita, before going to dinner. The one where I was laying in bed, sobbing, and she just happened to check in on me. The one where I said I wanted to die, and how many Ambien would it take to overdose? She responded right away with one could not overdose on Ambien, but instead they will lose all control of their bodily functions and shit themselves. Well, that sounded like a shitty plan. I would not like to do that. I then asked her the best way to commit suicide, and told her I was googling it. I was. But not because I wanted to really die; mostly out of curiosity. Rita told me she was not playing this bullshit game with me and gave me the sternest text messaging spanking I’ve ever gotten in my life. I threw my phone in my purse, forgot all about our conversation, and headed out the door to dinner. Once I saw my phone, on text message overload, I remembered what had gone down. I quickly responded that I was alright, so sorry, and I would call her in a few. I got home and called the two people I needed to check in with.

Your Fernanda was first. Ronan. Do you know what she did? It is unbelievable. I left for this trip, and I pretty much left my lovely little board members in charge of Ronan’s Day of Love at PCH. I knew I couldn’t be there, so I left the ones I trust most in this world, in charge of it. I knew they would not let us down. I know how hard this was for all of them to do; but they didn’t blink twice when I asked them. They were honored, to be honoring you in a way that meant so much to me. We have planned for a couple of months now. The candy cart, the balloons, the Star Wars characters to visit the kids. Who would be there, helping. A day of love at PCH, all inspired by you, to make others smile and happy and to forget about the fact that they are in a hospital, fighting this beast that no child should ever have to fight. I had an idea about what it is I wanted for your candy cart, but I gave Fernanda free rein to do whatever it is, she wanted. What she put together, ended up being a freaking masterpiece. I don’t know how she did it, but she did. She spent all day Friday, “Pimping your Wagon,” as she said. She had some great helpers, this I know. Thank you, all. So much. Ronan’s purple candy wagon, complete with an iPod and speakers, for the playlist I made, not to mention a secret hidden zombie underneath, is something you would have gone crazy over, Ronan. It was everything you. It was all you. I could not have done a better job myself. This is the reason, your Fernanda wears your ashes that I gave her, around her neck. Because she knows you inside and out. Because you are her Twinkle Twinkle Little Star. Forever and always.

I called her, I broke down and cried, I told her thank you over and over. I listened to her voice and let her put her little spell on me that she always does. The one where she calms me down and takes me away to a world where only you and I exist and she reminds me to remember this. That you are still here, with me. That you are mine and I am forever yours. Nobody else can do this for me, but her. I hung up with her feeling a little better. I had to call Rita, next. Our very long conversation can be summed up best by this.

Me: I am so fucking sorry. I should not have texted you that I want to kill myself crap. That was not o.k. I thought you knew I was kind of joking. You know me. You know I’m not going to do anything.

Her: You are a mother fucker. You are not allowed to do that to me, set the phone down, and not answer it. EVER! I did not know if you were serious or not. I thought you were really dead. I thought you were really dead, but you know what Fernanda told me? She told me this. “Listen, Rita. I believe Maya wants to die, everyday. But not by her own hands. Do you know how I know Maya will not actually do anything? Because she wears lipgloss. Because she gets manicures and pedicures. Because she puts on make-up and fixes her hair. Because this shows me that for all the pain she’s in, she has a shred of self-love left. She takes care of herself by doing these things. We can all be concerned if she stops showering and wearing lipgloss. Until then, she is alright.”

Rita and I were both in stitches. Only Fernanda could rationalize my madness by saying the key to me not taking my own life, is because I wear lipgloss. Only Fernanda, could make it make perfect sense because it absolutely does. I told Rita, I was sorry again. I truly was. I didn’t mean to make her worry. I was in a bad place and I was venting but it still was not right to do. I know I can be a jackass sometimes. I am thankful she loves me enough to forgive me. I fell asleep last night, cuddled up to your Liam. I was missing you extra much. He felt extra soft and snuggly to me. I soaked him in for the rest of the night, knowing what I had to wake up to. But it was another Ambien free night. I was a good girl, for you.

I woke up, feeling sick to my stomach. Ronan’s 5th Birthday day. I didn’t know what to do. I threw on my clothes with your daddy still sleeping and your brothers were just starting to stir. Out the door for a run I went. A little run that turned into a 2 hour run, partly due the detour I took, to sit in the middle of the forest to sob about you, and partly due to the fact that I got lost. Lost on your 5th birthday, without you. Seemed pretty fitting, actually. I ended up finding my way home, Ronan. I always do.

I made it through the day, thanks to the help of your daddy, brothers, and friends. The 4 of us had a low-key day/night. We all wore purple, from head to toe. I played Lacrosse out in the big, grassy lawn with your brothers. There spent the day laughing and giggling as they should have. I have yet to go on to Facebook but I swear it seems as people all over the world were out doing crazy, kind-hearted things for you. I am moved beyond words by just a fraction of the stories that I have heard. They fill me with a bittersweet hopefulness that I never wanted, but now it will always be mine. I will treat this as a gift. I have no choice. This life I live now, Ronan… is one filled with all things beauty and pain. They will always go hand in hand. I have to learn how to let them work together, while being respectful of one another. It’s a heavy-hearted job but it is my job to do. After today, there is the most amazing proof that I am not doing this alone. So many of my family, friends, ex friends, old friends, new friends, and strangers are in this for the long haul, too. Look at all you’ve done and it’s only been a year, sweet boy. Imagine what we will do, in this lifetime together. So many amazing things. I know this.

To everyone out there, who spent today, honoring my Ronan by being extra kind, spicy, loving, honest, brave, caring, wild and free. Thank you. So much. You are getting me through my darkest days. You are making a difference. You are making him, so very proud. I love you all. Without you, this would not be happening. It is because of your loyalty and love that this world is going to change. Thank you for believing this in your hearts and souls and for being grateful for what it is you have. No matter how much or how little because you all get what truly is important. LOVE and HEALTH. That’s it. Those are the only two things that matter in life. If you have those two things, you have everything.

One last little shout out tonight, Ronan. My lovely little board members, my intern Rissy, and sissy, Liz. I know today was so hard for all of you. Words cannot even touch how thankful I am. You took Ronan’s birthday and made the day of so many parents, kids, siblings, nurses, and staff at Phoenix Children’s Hospital. You made them smile. You gave them a good day full of warmth and love. That is priceless. You all are priceless. Thank you for all of your hard work, love and turning today into a day that was all about Ronan, without it having to be, “All about Ronan.” I am blown away at how perfect everything turned out, but not surprised. Just very, very humbled and grateful. I love you all, so much. I know he is so proud. Thank you, thank you, thank you.

Alright my Ronan. I need to end this now. Happy 5th Birthday. You would have been the most beautiful 5-year-old to walk this planet. This is beyond fucked up. This is beyond unfair. I am so sorry. I made one wish for you tonight. That I of course, hope you are safe. I love you to the moon and back. I will fix this. I will make this better. I won’t break my promise to you. I promise on my life, that I choose to live. Because this living thing is a choice and I am not going to waste it. I will live for you. Until you are ready for me to be with you, once again. I love you. Sweet dreams.

xoxo

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I don’t need words. I just miss you.

Ronan. Yesterday went a little something like this: May 8th, the eve before you passed away. We went into town. It was raining cats and dogs. We all decided it was a good idea to see a movie so into the dark theatre we went. I was fidgety. I was anxious. I kept squirming in my seat. I ate a little popcorn. I had a huge wave of guilt wash over me, sitting in that movie theater, watching “The Avengers,” which is a movie you would have loved. Your daddy looked at me and said, “You can go. Go get a pedicure or something.” He didn’t have to say it twice. I up and bolted before we were even 10 minutes into the movie. I could not have run out of that theatre, fast enough. Out into the pouring down rain of the streets of Portland, Maine, was where I needed to be. Alone. I didn’t have an umbrella. I didn’t care. I just started walking, not knowing where I was, or what I was doing. I walked for a good 15 minutes before I finally found some random salon where I could soak my troubles away. I ran in the doors. “Do you do mani/pedis?” asking like my life depended on it. “We do.” the glossy girl behind the counter said to me. I was so thankful that they had an appointment open.

As I was sitting and waiting, a nice girl was waiting next to me. The conversation started because she was dying over the rain boots I was wearing. You know the ones. Those badass Hunter Wedge heel Rain Boots/my obsession that I never get to wear. I wore them yesterday and whenever I do, I have women stopping to ask me about them. She wanted to know where I got them. I told her. I also told her how excited I was to wear them, because I never get to. She asked where I was from and I told her. Then came the next question. “What are you doing here?” My eyes fell to the floor and the tears starting welling up. “Ummmm…. I stumbled over my words. Somehow I found them, but not without sobbing and apologizing everywhere. I barely got the words out of my mouth and this stranger started bawling too. She got up to give me a hug and told me how sorry she was. We ended up going back to the pedicure area together where we talked all about you. The poor girl that was doing my pedi was quiet as she listened and when I looked down, she too had tears pouring down her cheeks. She didn’t say much for a while. I not only noticed her tears, but the pretty purple shirt she was wearing. Of course it was purple. She finally looked up at me and told me all about her best friend, who had bone cancer. How she watched her struggle through it and how she was leaving for San Diego tomorrow, to go and visit her. I started crying harder. What is it about pedi/mani places, that I always end up crying the hardest? I guess I really miss you when I am there. I really miss you and how I would take you to get your toes painted sparkly and you were always so exited to show everyone at PCH. Sparkly toes for the most sparkly boy.

After my pedi of tears, I met back up with your Daddy and brothers. We went to grab some dinner at this place the girls in the salon told me about called, “Silly’s.” And silly it was. In the best way possible. You would have gone crazy over it. Quinn went crazy over the purple kool-aid that they just happened to be serving that day. Liam went crazy over the deck of cards they had in the special lunchbox on the table. Your daddy went crazy over the chocolate milkshake. I went crazy over the fried pickles. Fried pickles, Ro. Can you believe that one? You would have went crazy over them, with me. Your daddy pointed to a table of two girls that looked to be in high school. They were sitting at a table together, playing cards, drinking cokes. Your daddy kept saying, “This is totally a place you and Salina would have come and hung out. You two are such Jacksons.” (his word for silly) I smiled. I watched the two girls at their table. They reminded me of my youth. With my childhood bestie, Salina, and the world of complete and utter silliness that we created and always lived in. The two girls didn’t look silly though. They looked serious. Like the two of them lived in a world, where they were fighting for everything they had; but they were doing it together. It made me ache for my youth when everything was so uncomplicated and easy. Well, compared to now. I know the world of teenaged drama all too well. I remember the “problems,” I had back then. I look back now and know that they actually weren’t problems at all. They were lessons learned and part of growing up. I am thankful for all of them. As we finished up our food, your daddy took Quinn across the street to get some snacks. The waitress brought out check. I told her I would like to pay for the girls’ sitting across from us, as well, so to please put whatever they had, on our tab. She looked at me, wide-eyed. “Do you know them?” I just quietly told her I did not. I told her to give them 2 of your F U Cancer bracelets for me as well. She smiled and said she was sure they would be grateful. What I really hope is that they will just remember this small act of kindness and do something else nice, for somebody else someday, just because.

We all came home, tired from the days events. I tried to lay down but it was early. I don’t remember what happened next. The time you passed away, was getting closer and closer. You want to know something, Ro. I don’t know the exact time you died. I’ve been too scared to look at your death certificate. That makes this all too real. I think it was around 3:25 a.m. I know what time it was, that I sent my one and only text message, after you left to your Mr. Sparkly Eyes. It was 3:32 a.m. It simply said two words. “He’s gone.” 2 words, but so earth shattering. Two words, but how could there have been more? 2 words were all I needed because any other words I had, would not touch the fact that you had left this world. You leaving this world was enough to dim every single star in the sky for that night. I know the sky was covered in a blanket of black.

Your daddy lit a candle for you last night. Everyone fell asleep. I did not. I watched the candle flicker. I went in and out of sleep. 1 a.m. 2:30 a.m. 3:00 a.m. and I was wide awake.  3:32 a.m. came. I sent my only text message, once again, to our Mr. Sparkly Eyes.

Except exactly one year later. This time it read:

Fuc. (fuck you cancer)

I love you.
He loves you.

Always.

I cried. I fell asleep for a couple of hours. I had the most vivid dream about being back at PCH. You were dead. Dr. Adams was there with me. She was dressed in all purple and looked so stunning. She held me like a child and I just told her over and over how I wished I had not taken you to Dr. K. The rest of my dream just consisted of the both of us sobbing and I remember her purple dress being so bright and pretty. I woke up to my phone chirping like a bird alerting me of a text message from your lovie at around 5 a.m. I read it, cried again and fell back asleep until my phone rang around 8 a.m. I threw on my Uggs, warm sweater and ran outside to pick up the phone for the only person I knew I would be talking to, today. Your Sparkly. I ran out into the cold, fog, and drizzly rain. Of course the weather is this way, today. Of course it is.

“Hi.” I was already crying

“I’m sorry. I’m so sorry.” the talking stopped and I just listened to your Sparkly cry.

I went quiet on my end and we sat there this way, on the phone for what felt like an eternity. Crying. Sobbing. What else could be said? No words were even necessary.

I babbled out a lot of “I don’t understand,” over and over. I babbled out a lot of why’s. Why him? “I’ll never understand this.”

I asked him, “How am I supposed to do, today?” in between my tears.

He said, “Don’t. Don’t do today. Spend the day in bed. Have a fuck it all day because this is fucking bullshit and there is no explanation.”

I told him I couldn’t. I couldn’t do that to Liam and Quinn.

“O.k. then. Go play in the sand. Do something that Ro would have loved to do. Who cares if it is raining. It should be raining. It should be raining, everywhere.”

“Alright. I will do my best.”

” I will check in on you later, o.k.?

“O.k.” I said.

“My heart is broken for you. I’m sorry.”

I crawled back into bed for a couple of hours. I knew I had a long day ahead of me and I had already felt like I had run a marathon.

I’m ending this right here, Ro. I’m tired. I don’t know if I can write much more about all the went on today. I will try, later.

I love you. I miss you. I hope you are safe. I am so sorry, baby doll.

xoxo

A city where the happy is too loud so let’s go away to the cold beach

Ronan. What is today? Sunday I think. The days are lost for me. The day you left me is almost here. May 9th. Your day of death. Not the day you “flew away to the heavens above,” not the day you “went to be with Jesus,” not the day you “went to a better place where you are an angel now,” not the day that you became “free,” not the day that “you went home.” I am not about to soften this blow with any of that bullshit. It’s fluff and fluff does not work for me. May 9th. Your day of death. The bloody hell worst day of my life. Period. I would actually like to take May 9th and make it a National holiday. I would like May 9th to be National F U Cancer day. I think that is appropriate since it is the day that cancer stole you. I am not taking your day and turning it into something fucking pretty, happy, light, and filled with angels from above. FUCK THAT SHIT. I am going to take the day that you left me and rename it and make it the name that it deserves. I think I will wear black all day long. I think I will try not to die from the pain of physically feeling, with every cell in my body, that you are not here. I remember our last moments together. They are a part of my soul now. They fill me with things like anger that I never knew existed. They fill me with things like a fire and a drive that I never knew I had. They make me want to take on the world because I know I can change this. I know we can change this. I know the power of our love can take the worst thing possible, and help others. But I am not doing this the nice way. I am not playing by the fluffy rules. There is nothing sweet and fluffy about having to dig your babies ashes out of his urn to place them in a plastic baggie, so you can take him on a trip with you. Anybody that says otherwise, can fuck off. Because it is simply not true. It’s bullshit and something no parent should ever have to experience. Especially not in this day and age when kids die from cancer, due to lack of funding alone. I don’t understand this. I will never understand this. I will never understand why this is acceptable. I will never understand why all of these kids are swept under the rug. I will never understand so I will spend the rest of my life, trying to fix this. This is what I am here to do, Ronan. I am not doing anything else.

I may have had a mini freak out last night in our hotel room. We landed in a big city. A big city is not where we need to be right now. I knew that planning this trip. I can do a city, all alone, and badass, any other month, but not this month. We went to dinner in this big city last night. It was all I could do to stay in the restaurant and not flip the fuck out. There were sooooo many happy people, everywhere. Happy and fancy. All dressed up. All happy and carefree. Nobody in that restaurant, had a dead almost 4-year-old. That I am sure of. “Their happy, is too loud.” I know what that feels like. I feel like that, all the time. It makes me sad and stings my eyes. Please bring him back. Please. I beg over and over in my head. I WILL DO ANYTHING. This never works, but I will continue to try for the rest of my life. I left the restaurant with Liam. We had a little foundation business to attend to. We had to get a picture of my fake training, for Palmer Cash, as they were my sponsor for the day. Thanks Palmer Cash. Everyone needs to check them out. They make the raddest tee shirts out there. Liam happily snapped my pics and laughed at my goofy posing/fake running. You see, I am not only doing this to make some money for your foundation, but I am also doing this to help us get through May. My life kind of depends on it. This was my idea as I knew we were going to need a way to get a laugh and some smiles on this trip. A light-hearted but heavy-hearted way to make some money to get Dr. Mosse’s trial funded, seemed like the way to go. So far, so good. I have had a blast and it is a healthy, good distraction.

We were all tired from our long day of traveling. We fell asleep pretty early. I ended up waking up, and having a mini freak out session/panic attack which caused me to slam two Ambien and send some insane text messages to your Mr. Sparkly Eyes. Well, not insane, but intense. I am always the most intense when I am the saddest/on the verge of jumping out of our 7 story hotel room. It was the Ambien that knocked me into a black coma of oblivion, not the soothing words of everything is going to be alright that I needed to hear. No words last night could have saved me. I know myself well enough to know when I am not capable of handling things on my own. Last night, when I woke up in that hotel room, only to find your daddy and brothers, and you were nowhere to be found.. well, what can I say? Nothing. What do you say to that? How can words comfort that? They can’t. They didn’t. I chose to escape instead. I am not perfect. You know how I hate our little frienemy. But on nights like last night, I don’t have a choice. The 7th floor jumping out of our hotel window, to splatter on the streets below, did not seem like a better option. Ambien won. Again, but not always. Not always is good enough for me, as of now.

I woke up this morning, all bright-eyed and bushy-tailed. No trace of black oblivion coma, existed. Up, showered, packed, Starbucks, hit the road, let’s get outta this big city. We met up with some friends. Good friends. Forever friends because of the unthinkable bond that we share. The one of a dead child, due to cancer. It was good to see them. So good. It actually felt good. It felt like home. I am so glad we are here. Getting out of Phoenix was the right thing to do. We watched their little boys’ Lacrosse game. God, you would have loved that game. It is so a sport you would have kicked ass at. Since you cannot be here, to kick ass at this sport, I now feel like I should do this for you. I am dreaming of a woman’s Lacrosse team as we speak. How awesome would that be? Your brothers want to play as well. The thought of that, put a smile on my face. I told them I would look into it once we returned home from our trip. They are both so excited. I am excited too. They are such good little boys. Almost too good. I need to rough them up a bit. I think Lacrosse is a good start.

After the Lacrosse game, we all went to lunch. I sat back with our friends and watched the way the 4 of our boys became fast friends, laughing and giggling together. 4 boys but there should have been 6. 6 would have been much better. 6 would have been absolutely perfect in this so-called imperfect world that does not exist if you have all of your kids, healthy and living. Healthy and living and there should be nothing to complain about, ever. Not the spilled milk, not the ” I don’t have enough time for myself because my kids keep me too busy,” not the messes made, not the arguments that are had, not the strong-willed child that throws a fit over everything, not the “I am too tired because my “sick,” child kept me up all night.” Please. I would give both of my arms for those problems. I would give my life for those problems. Those are not problems. Those are “you are so fucking lucky.” So shut up, suck it up, and be grateful. Stop making everything so much more complicated than it really is. Because at the end of the day, it’s not complicated at all. If it is, fix it. Are you laying with your child, as he takes his last breaths? If you are not and you are still complaining about this shit I would really like to punch you in the face. I cannot tolerate a life of complaining of nothingness. I don’t tolerate it. Which is why I may have such a big problem with being out in the real world now. Complainers are everywhere. I don’t do well with them.

If good days existed in my life anymore, today would have been one of them. We left our friends and headed off to our new destination. As we drove to our hotel, I spent the majority of the car ride, quite, with tears streaming down my face. Everything in our lives has changed. Even a 45 minute car ride. I hid my tears from everyone, as not to upset your brothers. I was so thankful to get out of the city. A cold, beachy destination seems to be much more fitting. A sleepy little town, where it seems as problems do not exist. I know this is not true. But due to the fucked up things that go on in my head, I have convinced myself that if we had live here, you would not have gotten cancer and died. Case in point, conversation with your daddy in the car.

Me: “I’ll bet nothing bad ever happens here.”

Your daddy: “That is not true. Bad things happen everywhere.”

Me: “Well, I’ll bet kids don’t get cancer and die here. I’ll bet if we would have lived here, Ronan would not have gotten cancer and died. It’s just too perfect.”

Your daddy a.k.a. the voice of reason and also the voice of you are clearly insane: “People get cancer everywhere, living here would not have changed Ronan getting cancer.”

I huffed and puffed. A small part of me thinks that if we had indeed lived in this small little sleepy town, that you would still be here. It’s my pretend world and I can live in it if I want to. I choose to live in it. Most of the time alone. Sometimes not. Either way, I don’t see myself leaving it anytime soon. It is the pieces of pretend that give me a break from our reality.

I chose to see you today. Running on the beach. Diving into the freezing ocean like I know you would have. Carrying your little red sand bucket. Giggling everywhere. Yelling, “Quinny! Mama! Quinn just threw sand at me!” Then throwing the sand back. I would have chased you like the wind today. I would have loved every second of cleaning you off. Throwing you into a warm bath where I would make sure you felt safe, clean, loved and warm. I would have put on your sweet little pajamas and tucked you into bed with me, where you belong. Nowhere else. Certainly not this nowhere that is here now. Certainly not this nowhere of crying myself to sleep because I am so sad I got to do none of those things with you today. I know you want to be here doing them, just as badly. I can feel it. I am sorry. Forever sorry.

I might have to end this now. I think it’s really long and I’m too sad, to continue on. Today was as good of a day, as it could have been. Your brothers happiness is proof of that. There happiness is how I judge good days now. I very rarely know happiness of my own. I’m o.k. with this. As long as I get to see it through them. I love you. I miss you. I hope you are safe. G’night baby doll.

xoxo

Taylor Swift loves Rockstar Ronan! And I don’t love Obnoxious Complainers! So shut up!

 

 

 

 

Ro baby. I am trying to breathe tonight. I am trying to focus on all the yummy goodness that has filled my days. Because of you, and the effect you are having on the world. I actually had a lady come up to me today and tell me that I didn’t only change her life, but I am creating a movement. A movement, Ro. I hugged her. I cried. But what is new….. I’m always crying. Those were powerful words that she said to me, as she looked me in the eyes as I watched her eyes, well up with tears. I told her it was all you. Not me. Never me. Always you.

So, I am trying to let some things off of my chest because there are people who just don’t get this, or who do get it and just choose to ignore this and are not worthy of your story. They just are not. And I have to accept that. I cannot change everybody. I cannot change the person who knows your story, knows who I am but does not care. So, she sits in front of me and bitches about all the stress in her life, like the remodel of the 1 of her several homes. Complains right in front of me Ronan! And I am so pissed at myself tonight. I sat back and pretended like I wasn’t standing right there, as if I was invisible because I know if I let myself get pissed about the all of the asshole people in the world, that I am going to wasting a lot of time and energy on negativity. I have enough Inferno Fuckwad Bob in my life to go around for everyone. Do I really need to add to it? Do I really need to let stupid shit, get under my skin? No. But it does because I am human. And I know what it means to have real things to worry about such as just trying to stay alive. Every day I pray for death because the love of my life, DIED, of Childhood Cancer. I’ve got to come up with a new plan. And it cannot consist of the berserk fantasy moment I had in my head where I ripped this ladies hair out and told her to shut the fuck up because she has all of her babies and that is all that matters. I am going to have to take a less violent approach so I don’t get my ass shipped off to tent city with Sheriff Joe. It will maybe just have to be something like, “Oh, do you know Ronan? (slip her one of your little cards) Oh you do?(because everyone that lives in our very big but very small little city does) I am so glad. He is amazing. You know he died from Childhood Cancer, right? But gosh, I am really sorry that you are so stressed out over your home remodel. I hope it turns out to be beautiful.” Kill em’ with kindness, right Ro? Either that, or just choose to look the other way. Fuck that. I’m not looking the other way anymore. People need to wake up and stop bitching about such nonsense. Your house remodel, is NOT a problem. Your nanny quitting, is NOT a problem. Your nail breaking, is NOT a problem. Kids dying, everyday IS a problem. The dad just diagnosed with Lung Cancer, who is not a smoker, IS a problem.  All of the kids around the world, who don’t have homes or families, IS a problem. Not getting to wipe your babies sweet tears anymore, because he is DEAD, is a FUCKING PROBLEM!!!

Enough with the complaining about make-believe problems. Go visit a Children’s Oncology floor and then see if you can leave there, still bitching about your problems. Actually, do not go and visit this floor. The fact that you sat and complained in front of me today, is your fucking problem, not mine. You are not worthy being surrounded by all the beauty that shines off a kids Oncology floor. You are not worthy of any of the beauty that is going to come from Ronan’s story. Do you know what I heard today, asshole lady? I met the most beautiful family. Little Elizabeth Blair who has Stage IV Non-Hodgkins Lymphoblastic Lymphoma. She was talking about her bald head and how she doesn’t have blond hair, like her mommy anymore. Her mom just looked at her and said, “But where does beauty come from, Elizabeth?” Elizabeth answered right away. She said, “It comes from here,” and pointed at her HEART. Her heart ladies and gentleman. This 5-year-old knows more than most adults. This 5-year-old knows what is truly important in life. This 5-year-old is going to grow up to be an incredible young lady. I am pretty sure she would have anyway, due to the family that she is surrounded by. But now she has that extra sparkle in her eye, that most people do not. A sparkle in her eye, just like you did, Ro. The sparkle that is going to help to change this world. And hopefully make more people, stop complaining about stupid shit and doing something that will actually help to make a difference. Even if it means they just make their kids’ lunches for school and give the nanny/housecleaner, the day off. So be it. It’s a start. Baby steps can be done. They can be done and they can turn into something much bigger.

Maybe it starts with giving the Nanny the day off, paid of course and actually driving your kids to school, yourself. Then guess what? The next thing you know, instead of spending Thanksgiving basking in too many pies and food to eat, you and your entire family, spend a few hours, in a soup kitchen. Pretty soon it starts to set in that, “Oh my god. I am so thankful. I mean really thankful. I am thinking about that family today, who is having to spend their first Thanksgiving, without their Ronan. I have all of my kids. They are healthy. I want to be a good person. Not just a good person, but a REALLY good person. Because I am thankful. And blessed. And because so many people, are not. But deserve to be. So I am going to work really hard, to try to make a difference somehow, in this world.” Or maybe not. Maybe you would just sit around Thanksgiving, obsessing about everything you are going to buy on Black Friday. Obsessing about the Jimmy Choos that are going to go on Sale at Saks. This is probably the case. So in that case; fuck off. But I really hope your contractors are not late, AGAIN! I mean really, they were an hour late and you screamed and yelled at them because that is so much of a real problem? Those paid employees can be so rude sometimes. I don’t know who they think they are. The sense of entitlement of those blue-collar workers, is just beyond me. Shut up lady. Shut up and fuck off.

Oh Ro. Sorry your little post got Hijacked tonight. I just had to get that off of my chest. UGH! I have ONE more thing to say. Hang tight, little man. DEAR PEOPLE WHO STILL HAVE ALL OF THIER CHILDREN- Please STOP. I do not want to hear anymore, “Oh… Ronan is happy. He is in Heaven. God is taking care of him, you don’t need to worry.” I’m warning you NOW. If I have to hear this one more time, it is not going to be pretty. I get that most of you mean well, but you also have all of your kids. You get to watch them play soccer, you get to hang up their art work, you get to kiss them goodnight and tuck them in bed. You get to do all of those amazing things, therefore you do not have the right, to tell me my child is in a better place. Because I can tell you, I can fucking guarantee he is not. He is not here, with me, which is the only place he belongs. So please, keep your he is with GOD and in a better place comments to yourself. It may bring you peace, but it only makes me angry. Pray for me all you want. Bring on the prayers. But stop saying the things above. I’m going to start carrying a weapon with me, like Silly String. The next person that says this to me, is going to be douched in Silly String. You’ve been warned.

On to the amazingness, RO! Moving forward. Breathing. Inhaling the smell from your GiGi that is covering my face. It smells like you. Let’s start with the darling Taylor Swift. That’s a good story to end with. Or how about the “Fan Mail,” that I am getting sent to Katie’s Shop, like the Foster the People signed concert poster. Ummm… Hello lovie who sent me that. So rad. Thank you. Or all of my Ro Baby Maya’s Mafia Fans whom I met today, by chance, who just popped into Katie’s store to buy bracelets. So sweet. I loved meeting a few of you today. The love you have for us is so inspiring. The awaking I am seeing in these beautiful people, Ronan, is very moving and powerful. Just like you.

Crap… sidetracked! I just have too many great things to blab about! Back to T’ Swizzle. Who told her about you? Because I am so very sure, it was one of your little Fairy God Mothers down here. I was contacted by her event manager. “Taylor would like to extend two tickets to her show, plus a meet and greet with her, before hand. Are you available?” Was I available? Why yes, of course. I knew with all the amazingness going on, that I wanted to see if I could work my magic just a little. I have no shame, so I asked for 5 tickets instead. Poof! My wish was granted. Now, I just had to come up with a plan to reward some very special people in a very special way. I told Katie about the email. I knew the two of us, would come up with something very yummy and delicious to do. We thought about having people bid for the tickets, to raise more money for your foundation. We knew the tickets, could have gotten a lot of moolah. But that seemed to be defeating the purpose. We have been watching how hard, our little Rockstars have been working, to raise their 200 dollars to model in the show. Then Katie showed me this FB Wall post written by Elizabeth’s mom, the little girl with Stage IV Cancer.

Oh my SWEETNESS! Holy Willy Wonka! Today was the absolute BEST!!! Today we ran, walked, skipped, piggy backed, wheeled and twirled a 5K to fight Childhood Cancer at Grand Canyon University “Pinkalicious Style!” What does “Pinkalicious Style” look like you ask? Well, let me tell you we had everything from argyle to piggy tails, rainbow to more rainbow and lipstick! You can’t forget the lipstick. And oh my, the most AMAZING, “Beauty comes from within the heart” t-shirts designed by our multi-talented long time very special friend Chris Wahl!! He designed the most perfect shirt for my most perfect little girl. E’s Team consisted of not only the most incredible besties that a girl could ask for but also her past preschool teachers, babysitters, and new friendly faces of the kindest individuals who truly give the meaning to our team shirts. Beauty comes from within the heart. Team Elizabeth showed genuine beauty today. Each and everyone of us crossed that finish line in true pinkalicious style whether it was by wagon or walking, running or riding, age 5 or age 50. Medals were made and miles were gained all in the fight against childhood cancer. And well, Lymphoma, it can kiss our determined pinkalicious butts! Because we rocked it out there today! But, that’s not all. The kids also rocked it in our front yard today. They ROCKED it GOOD! As promised, Elizabeth, Kate and Bryce were fundraising full force with their Super Duper Candy Scoop Shop featuring a Rainbow of candies and Rainbow Manicures. Although, there was no rain, they each had a pocket full of sunshine and were ready to make things happen with a rainbow of colors in Pop Rocks, Gumballs, Lemonheads, cherry rainbow and pink lemonade Swizzle Sticks, gigantic Jaw Breakers, Gummy Bears, rainbow heart cookies, and rainbow manicures. Have I mentioned Elizabeth LOVES rainbow anything? The proceeds of todays fundraising efforts will benefit The Ronan Thompson Foundation. The Ronan Thompson Foundation and The Garage Boutique for Kids are hosting a Rock the Runway Fashion Show Event. My 3 kiddos are all participating. Although they may not all model, they all 3 are certain they want to help raise money to help in the fight against Pediatric Cancer. These kiddos made BIG BIG accomplishments today! I would say a top accomplishment for each of them to date. Their goal for today was to raise $200.00 each for a total of $600.00. Are you ready for this? Are you ready to hear what my kiddos raised in our front yard to fight Pediatric Cancer? $1019.64!! In three hours, these determined children fought for their sister, they fought for their cousin, they fought for their friends, they fought for your family, they fought for our family, they fought for Ronan and all the other children who have won or lost their battles to childhood cancer. They fought hard and they fought proud! My husband and I are so completely impressed with how busy these little bees worked today. But we are not surprised at the results! You, our community, our family of friends are more than generous. We had a complete stranger drive up and give $100.00! Oh my SWEETNESS! We have a toothache tonight from all the sweetness. We are blessed, thankful, and just so happy for all the kindness, love and of course beauty that comes from within all of your hearts. So whoop there it is! $1019.64 going to The Ronan Thompson Foundation. You are beautiful, The Blair’s P.S. Elizabeth went back to school on Wednesday!!

It was a no brainer. We wanted to extend the invitation to The Blair Family, to go with us. I had Katie call them today. She said it there were tears all around. My heart fluttered. I had not met The Blair Family, until today. Until after this phone call was made. About an hour later, they came bouncing into Katie’s shop. I hugged Elizabeth’s mama tight and we both cried a little. I rubbed the top of Elizabeth’s smooth, bald head. It made me miss you so much. Turns out, The Blairs, LOVE Taylor. They already had tickets. They gave their tickets to some friends and Elizabeth’s brother and Daddy get to go as well. We are so exited to take Elizabeth, her mama, and older sister, with us- to meet Taylor and to sit in some really good seats. It is going to be an amazing night. That Taylor, has a heart of gold. Just like so many of the lovelies that seem to be coming out left and right, Ro. They all love you so much. Amazing things are happening, my little man. All because of you.

Ro baby. I wish I could tuck you in but I can’t. So I will cuddle with your blanket instead. I will go to sleep, without my Ambien because the pain is something I need to be in. I cannot mask or cover it up. I will fall asleep with my tears soaking my pillow because it is where I need to be, now. I love you so much. I miss you so much. I hope you are safe. Sweet dreams, baby doll.

xoxo

Your Sparkle will Shine Forever

I’m not sleeping. I can’t. Could you? Could you sleep, without being able to kiss your baby goodnight? Knowing that the place that he once slept, is empty. Knowing that his little closet, filled with his clothes and shoes, will never be worn by him again. Could you sleep? Could you drift off into a peaceful place even for a few hours, to escape the nightmare? For me, it is physically impossible.

So, I sit here instead. Wishing so badly, that he would come running into my room in the middle of the night, just because he missed me. Wishing to be able to complain about the sleepless night I had the night before, because he was up all night, with just the flu. Wishing I would be exhausted tomorrow, because I had him to take care of all night long. Not because of the fact that I cannot sleep, because he is dead.

DEAD.

MY CHILD IS DEAD

What that does that even mean?

I GOOGLED IT. Too many raw things appeared. But nothing as raw and painful of having you not here.

I FOUND THIS. IT IS AN INTERNAL SCRIPT FOR PARENTS WHOM HAVE LOST A CHILD. What they may be thinking and feeling.

I concur.

  • I have failed my child.
  • I can’t live without seeing my child’s face.
  • I can’t live in a world where my child is a statistic now.
  • No one needs me now. My life has lost purpose.
  • My future – as a mother, as a father, as a step-parent, as a grandparent – died with my child.
  • I have regrets for things not said/done/realized before the death.
  • I should have prevented it.
  • I am alone. Other people grieve, but cannot share MY grief or make it less. They do not understand the depths of my grief.
  • My energy is gone. My will to live is gone. All around me, I see and feel the sadness and emptiness.
  • The world failed me. God failed me.
  • I am only living now for my other (children, spouse, partner, family, friends, profession). I am no longer living a life worth living for me.
  • I failed my child. (It usually begins and ends with this)
I know all of this. I believe everything above to be true. It is my life every single second of the day. I read the words. They make me sad. I take a break from Googling all things morbid, twisted and dark. An email pops up on my screen. I open it. I read it. I smile. I laugh. I cry. I have goosebumps. I feel alive. It’s from somebody I don’t know. There are a lot of those somebody’s now. This somebody made me feel proud of who I am. This somebody reminded me that although your little physical body is gone, Ronan. Your sparkle will stay here, forever. Thank you for this, to this M.o.M.M <3

Maya,

Im sure you get HUNDREDS of msgs on here as well as thru your email, FB, and your foundation but I feel like I need to write to you. You may not read this but I want you to know that Ro and YOU, Ms.Mama Maya are MAKING SHIT HAPPEN!!!!

I was not sent to your blog by a fellow reader, I dont know anyone personally (except for EVERYONE I have turned on to the blog since) that followed your blog or knew you personally, no one i know even knew of you or Ro before May 27th 2011 when I was sitting in the living room and happened to be browsing came across a post that had just been written, titled ‘Learning how to Live Half-Alive’. I had to click on it and see just what this post was and if it STOOD up to some of my fav lyrics.

Well, imagine my shock when not only did the blog stand up, it OUTSHINED anything i have EVER in this world even imagined of feeling. Tears sprang to my eyes, I felt like I had been punched in the gut, the wind knocked out of me, my mind could not wrap around the possibility that this was REAL LIFE and not just a blurb for the latest fiction novel from Jodi Picoult.

After reading that first post I clicked on the Baby Ronan link and within seconds had tears POURING down my face. I instantly had to know WHO this baby boy was that had ALREADY captured my heart? Can you believe that Maya? My whole sense of being ACHED for this baby whom I had NEVER even seen a picture of. I felt numb, my head was aching. I couldn’t believe that YOU were somewhere in this world hurting the way i was X’s a GAZILLION. I couldnt even (and still can’t) IMAGINE a pain that fierce. Right then and there The Thompson’s became a part of my family and heart.

My friends on my fb are re-posting my posts on childhood cancer, people are asking my kids and myself about our RockstarRonan bracelets, to which my 6-year-old replies, Ronan is the BRIGHTEST STAR IN THE SKY BABY!! http://www.rockstarronan.com. He’s a lil walking bill board for Ro and this horrible disease.

Next FUCKTEMBER I will be walking around with Info cards about childhood cancer and the BIGGEST sharpie i can find so that EVERY breast cancer sign I see gets graffitti’d on with KIDS GET CANCER TOO!! (sorry had to vent that it has been driving me crazy seeing Breast cancer start gearing up for OCT and trying to take the light from these BABIES who put all of their faith and trust into ADULTS who are supposed to be caring for and watching out for them?! and yet MOST turn a blind eye because it’s just too ugly. . . I honestly would not like to know the person who can look at RO, hear his story and simply walk away and DO NOTHING??)

I know that I have been rambling in this letter to you and I’m sorry. I really just wanted to let you know that you Ms. Maya and your A M A Z I N G baby Ro have touched the heart of a random stranger thousands of miles away and I will be by your side in this FIGHT of kicking cancers ASS every step of the way! I hope that one day our paths cross and I can meet you and hear some ‘spicy’ monkey stories, golf in some funky TUTU’s, blaring some Katy Perry while doing ALL things ROCKSTAR (:

Im so happy to read when you have a ‘good’ day, that means that even just a LIL bit of what I have been praying and wishing for you is starting to break thru the HELL you are living.

Love,

A MoMM <3333

PS. My grandma was THE BEST grandma in the WHOLE world!!! There is not a day that goes by that I dont think of her. Since she is no longer ‘here’ with me I KNOW that she is with Ro and since she was the best in the whole world she is DEF the best in ALL of the HEAVENS and she is taking care of Ro for you until you can. . . and she’s a stickler for brushing teeth and a SOFTY when it comes to rocking babies and snuggles <3

Bubbles galore. Just for you. Who cares that Quinn flooded everything? He did it, for you.

The Stages of Life without you

Ronan. Productive days are good for me. Days where I am busy, have lots of tasks at hand, and it forces me to feel like I have a bit of a purpose in this life without you. I went this a.m. to meet your Mimi so we could have a meeting with our Foundation CPA. I wanted to meet her and go over a few questions I had. It was a good, productive meeting. Afterwords, I headed out to North Scottsdale to see the Good Doctor. I like to check in with him every couple of months. I told him that I had stopped taking my Zoloft. He asked why and I told him that I was tired of being numb. He said that was a good reason and asked all the usual questions to make sure that I am actually doing alright without it. I told him that I wanted to deal with the pain of losing you, and to actually feel it; even as much as it hurts. We talked about a lot of different things. I told him about the sleep issues I’m still having in a major way and how I’ve taken my Ambien the past couple of nights. I don’t want to take that crap, but I also know that sometimes I need a break from all of this pain. Trying to sleep on my own, with only Melatonin, is just not working. I’m still going to continue to try, but I can only take so much. I hope one day I’ll be at peace with sleeping again. I really miss it.

After my visit with the Good Doctor, I came home and was full of way too much energy/anxiety. I threw on my clothes and drove to Camelback Mountain. I met my Frienemy, Inferno Fuckwad Bob there. I hiked up that mountain, as fast as I could today. It was only 102 out. Just as I was tackling the last part of it, I felt the need to stop and take a break. But then the voices in my head, screamed at me otherwise. They told me to keep going, to push myself harder, because you were waiting at the top for me. I could have been suffering from heat stroke, but I didn’t care. In my mind, I had to keep going, to get to you. I ignored the waves of nausea in my stomach, and continued to the top where I think I almost passed out. I sat and took a lot of deep breaths and drank my water. There were a couple of other people as crazy as me, who were there as well. They were there for pure pleasure though. Not because they know anything about Inferno Fuckwad Bob. I sat and listened to the happy conversations around me and almost got lost in the couples world; while they were snapping pictures of each other and were beaming with excitement about making it to the top. I wished to be that girl that I used to be today….. so giddy and proud of hiking Camelback. I remembered that girl today. The one who used to hike Camelback for pure pleasure, not because she feeds off of the pain. That girl seemed so young, so innocent, and so carefree. I missed that girl.  I wished for a rewind button, before you were sick. I wished so many things today at the top of that mountain. None of them came true.

Somebody asked me the other day, where I was in the stages of Grief. I am aware of the stages, but the question caught me off guard. Stages? I have to follow the stages? I didn’t know how to answer. It seemed so strange to me, as if there is a formula to follow after losing you. I am not like everyone else because everyone else did not have YOU, as there son. I guess I’ve never really taken the time to sit down and process the “Stages.”  I took a look at them the other day. They make sense, but I don’t necessarily think there is an order that I am following them in. I have felt these things, since you were diagnosed. I feel these things, 100 times a day. I don’t think the things below should be named the “Stages of Grief.” It should be written as a manual on, “Welcome to your new life, after losing your child.”

It should also have a side note that says, “Good luck with that. Doesn’t it fucking suck?” Here are the “Stages,” below. Just in case any of you are curious.

Denial

This first stage of grieving helps us to survive the loss. In this stage, the world becomes meaningless and overwhelming. Life makes no sense. We are in a state of shock and denial. We go numb. We wonder how we can go on, if we can go on, why we should go on. We try to find a way to simply get through each day. Denial and shock help us to cope and make survival possible. Denial helps us to pace our feelings of grief. There is a grace in denial. It is nature’s way of letting in only as much as we can handle.

As you accept the reality of the loss and start to ask yourself questions, you are unknowingly beginning the healing process. You are becoming stronger, and the denial is beginning to fade. But as you proceed, all the feelings you were denying begin to surface.

Anger

Anger is a necessary stage of the healing process. Be willing to feel your anger, even though it may seem endless. The more you truly feel it, the more it will begin to dissipate and the more you will heal. There are many other emotions under the anger and you will get to them in time, but anger is the emotion we are most used to managing. The truth is that anger has no limits. It can extend not only to your friends, the doctors, your family, yourself and your loved one who died, but also to God. You may ask, “Where is God in this?

Underneath anger is pain, your pain. It is natural to feel deserted and abandoned, but we live in a society that fears anger. Anger is strength and it can be an anchor, giving temporary structure to the nothingness of loss. At first grief feels like being lost at sea: no connection to anything. Then you get angry at someone, maybe a person who didn’t attend the funeral, maybe a person who isn’t around, maybe a person who is different now that your loved one has died. Suddenly you have a structure – – your anger toward them. The anger becomes a bridge over the open sea, a connection from you to them. It is something to hold onto; and a connection made from the strength of anger feels better than nothing.We usually know more about suppressing anger than feeling it. The anger is just another indication of the intensity of your love.

Bargaining

Before a loss, it seems like you will do anything if only your loved one would be spared. “Please God, ” you bargain, “I will never be angry at my wife again if you’ll just let her live.” After a loss, bargaining may take the form of a temporary truce. “What if I devote the rest of my life to helping others. Then can I wake up and realize this has all been a bad dream?”

We become lost in a maze of “If only…” or “What if…” statements. We want life returned to what is was; we want our loved one restored. We want to go back in time: find the tumor sooner, recognize the illness more quickly, stop the accident from happening…if only, if only, if only. Guilt is often bargaining’s companion. The “if onlys” cause us to find fault in ourselves and what we “think” we could have done differently. We may even bargain with the pain. We will do anything not to feel the pain of this loss. We remain in the past, trying to negotiate our way out of the hurt. People often think of the stages as lasting weeks or months. They forget that the stages are responses to feelings that can last for minutes or hours as we flip in and out of one and then another. We do not enter and leave each individual stage in a linear fashion. We may feel one, then another and back again to the first one.

Depression

After bargaining, our attention moves squarely into the present. Empty feelings present themselves, and grief enters our lives on a deeper level, deeper than we ever imagined. This depressive stage feels as though it will last forever. It’s important to understand that this depression is not a sign of mental illness. It is the appropriate response to a great loss. We withdraw from life, left in a fog of intense sadness, wondering, perhaps, if there is any point in going on alone? Why go on at all? Depression after a loss is too often seen as unnatural: a state to be fixed, something to snap out of. The first question to ask yourself is whether or not the situation you’re in is actually depressing. The loss of a loved one is a very depressing situation, and depression is a normal and appropriate response. To not experience depression after a loved one dies would be unusual. When a loss fully settles in your soul, the realization that your loved one didn’t get better this time and is not coming back is understandably depressing. If grief is a process of healing, then depression is one of the many necessary steps along the way.

Acceptance

Acceptance is often confused with the notion of being “all right” or “OK” with what has happened. This is not the case. Most people don’t ever feel OK or all right about the loss of a loved one. This stage is about accepting the reality that our loved one is physically gone and recognizing that this new reality is the permanent reality. We will never like this reality or make it OK, but eventually we accept it. We learn to live with it. It is the new norm with which we must learn to live. We must try to live now in a world where our loved one is missing. In resisting this new norm, at first many people want to maintain life as it was before a loved one died. In time, through bits and pieces of acceptance, however, we see that we cannot maintain the past intact. It has been forever changed and we must readjust. We must learn to reorganize roles, re-assign them to others or take them on ourselves.

Finding acceptance may be just having more good days than bad ones. As we begin to live again and enjoy our life, we often feel that in doing so, we are betraying our loved one. We can never replace what has been lost, but we can make new connections, new meaningful relationships, new inter-dependencies. Instead of denying our feelings, we listen to our needs; we move, we change, we grow, we evolve. We may start to reach out to others and become involved in their lives. We invest in our friendships and in our relationship with ourselves. We begin to live again, but we cannot do so until we have given grief its time.

So, there you have it, Ro. The Stages of Grief. I do think it was beautifully written. I think it was written by Dr. J’s friend, Elisabeth Kubler-Ross. I’m reading her book now, “On Children and Death.” She was a good friend of Dr. J’s which tells me she is worthy of me reading her book. I’m not too far into it as I am having a hard time staying focused on it as it is one of the many pile of books next to my bed. I want to finish this one first, but I have some homework that I am trying to get done before I meet up with of few of our lovelies next month to go over your Foundation. Homework that requires research and not enough hours in the day.

Ro baby. I spent the rest of the day, playing the good mama role, really well. Except I didn’t cook dinner but one of our dolls dropped off dinner instead. Thanks, Katie. You saved me tonight<3<3<3

Time to try to sleep, Ro. I’m getting up early to run with Samya in the morning. Miss you so much. I love you and hope you are safe. Sweet dreams, Baby Doll.

xoxo

Running for Ro

I want to run for Ronan this year in the P.F. Changs Half Marathon in Phoenix. They currently support the following:

Interested in becoming an Official Charity? Online Charity Application

Preferred Charity Partners

Running across the finish line is an amazing personal accomplishment. Give your race even more meaning, by joining a charity training program from one of our Preferred or Official training partners! Make an impact while training with new friends that will last a lifetime.

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DetermiNation – The finish line is just the beginning

The DetermiNation program is the American Cancer Society’s nation of people at all levels of athletic ability who are determined to end cancer. This powerful and inspiring movement saves lives by enabling you to dedicate your training and participation in marathons to a lifesaving effort to fight a disease that has already taken too many lives. With every step taken and every mile conquered, you are helping create a world with less cancer and more birthdays.

Find out more about how you can train with the American Cancer Society and help save lives. Visit us atwww.determinationphoenix.org or call 602-224-7475 today.

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Team In Training – Get More. Give More. Register Today!

Completing an endurance sports event such as a marathon or half marathon is one of life’s great experiences. And when you train with The Leukemia & Lymphoma Society’s Team In Training, you make that experience an even greater accomplishment by not only changing your life but by helping cure cancer. Team In Training also gives you more of everything you need for success.

In return, you’ll raise funds to help people with blood cancers live better, longer lives.

Find out more about this exciting program and how you can really make a difference in the search for cancer cures. Visitwww.teamintraining.org or call (800) 482-TEAM today.

 

Official Charities

I have submitted an application to be reviewed to form The Ronan Thompson Foundation. Running for Ro. Who do I have to blow to make this happen? Seriously.
Let me know what you think, peeps. Would you run for Ro??
I personally think they should also consider changing the name of the Marathon. P.F. Changs Rock and Ro Marathon has a much better ring to it. Let me know if any of you out there think you can help make this happen:) Thanks lovelies!!!!