We are so excited to FINALLY announce…

tumblr_mogu13bkIP1s95kwbo1_500The Ronan Thompson Foundation, Max’s Ring of Fire, and Grand Canyon University are teaming up! We are so excited to announce that on October 26th, we will be bringing a run to San Diego with the help of Grand Canyon University! Registration is already open at www.runtofightcancer.com and for all you Phoenix runners, GCU will have a “get on the bus package” that will include transportation from Phx to San Diego, hotel accommodation, and entry into the run. Details coming soon, be on the lookout.

Just for being loyal FB fans we would like to give a 10% discount to anyone who registers using code word “fightcancer”. Make sure and share this to all your friends and family, particularly the ones in California :). We can’t wait to see you all in San Diego!

Hi. I’m in L.A. I like it here. Little 3,4, and 5 year old boys, who look like you, do not exist on Venice Beach.

Ronan. It’s been almost a week since I posted last. I know this usually means I’m in a dark space; but for once this has not been the case. It’s not that I have not been thinking about you, every waking second, because I have been and I always am. I guess I just needed to give myself a little break so I could survive the last week of Coronado Island of 3,4, and 5 year olds, everywhere. Your daddy made it in time to spend the evening of Father’s Day with us. Macy filled the role of the surrogate father for the day and as always, did an amazing job. She was supposed to fly home on Sunday night, but somehow I talked her into staying an extra day. It had nothing to do with the lazy day we spent laying on the beach, soaking up the sun, either. Well, o.k. that maybe had a little something to do with it, but I also know that she could sense that I needed her and she did really want to spend some time with your daddy as well. It was an o.k. day. We made it the best we possibly could for your daddy. It was hard to look into his eyes though and see the pain pouring out of them. A father should never be without any of his children, on Father’s Day, but your daddy, most of all. He is too good of a daddy to have to carry this never-ending pain around. I’m always so sorry and so sad for him. I don’t know that I’ll ever be able to look at him again and not see the constant sadness that fills his eyes, even when he is smiling. I know those eyes all too well as they are a reflection of mine.

The rest of the week was pretty low key. Lots of beach time. A little surfing. Some running. Basketball. A movie. Sleeping. No Ambien for me for a couple of weeks now. Dr. JoRo will be proud of that. I’m kind of proud of that too. I got a text message on Wednesday from our lovie, Charisma. It was more like, “OMG. When are you leaving San Diego? I can’t believe we did not meet up! Wanna make a trip to L.A. to see me?” You know how I LOVE spontaneous plans. I texted her back. “Yes. Let me work my magic. I’m sure I can figure something out. I’m supposed to go back to AZ on Saturday, but let me talk to Woody.” I got home and told your daddy about what had come up. I think I spun it to him as, “Wooddawg. If I don’t go to L.A., who knows when I am going to get to see Charisma again and it’s already been way too long. She’s leaving for Austin to shoot the new series she just got picked up on, to become a regular. I NEED to give her a congrats hug and see my friend.” It didn’t take much convincing on my end. I offered to take one of your brothers with me as they could use the time apart anyway. Of course your Quinny chose to go with me and Liam chose to stay with your daddy. Quinn cannot seem to be separated from me and Liam seems to be stuck to your daddy like glue. Quinn and I hopped in the car super early on Friday morning to drive to L.A. It was a reunion that showed me much too much time had passed since I had last seen my friend. The last time I spent with her, was when she came out for your services and you know I don’t remember any of that. I’ve really missed her.

Quinn and I arrived and it felt so good to get the frick out of Coronado, and a change of scenery. There are no 3,4,5 year old boys, roaming around the streets of L.A. who all look like you. We spent the day at Venice Beach. I soaked up a day of sunshine with Charisma while your brother and D surfed. I soaked up the homeless bums who filled the boardwalk of Venice Beach. I caught up with my friend. I breathed. I exhaled. I needed to, otherwise I was going to burst. We had a nice lunch and an even better dinner at some to die for Mexican food restaurant. Everyone is snug as a bug in a rug now and sound asleep. All except me. My thoughts are swimming with all there is to do. How much I miss you. The awful way I left your daddy today which was which one of us, was going to take Ronan home. Which meant, who is taking your urn home full of your little body. Your daddy did. I took your GiGi with me, instead. We both felt you would be safer with your daddy. The fact that this conversation is now part of our normal lives leaves me sick to my stomach in a way that I am too tired to explain tonight. I’m getting sleepy. It’s 3 a.m. I mainly just wanted to check in. I know how my lovely little blog readers get when they don’t hear from me, for a while. They worry. They are the sweetest and I am thankful that they care so much. I am o.k. And for me, o.k. is as good as it gets. I am happy to have spent today in the presence of someone whom I think, hung the moon. You don’t get much better in life, than my dear friend, Charisma. She reminds me of all the pain in the world, while pointing out the beauty as well. She reminds me that they can coexist in a peaceful manner. She makes me laugh with her crazy car dancing and with her, the smiles are always true. There is no faking or forcing. There is no judgements or disappointments. There are only journeys and love. I like my world when I am with her. It gives me the break that I know I need and I know I deserve. She loved you so much.

I love you, Ronan. So much so, that I know we are going to do everything it is, that I want to do for you. I don’t care if it costs 150 billion dollars. You cannot put a price on our love and the power it has to change this cancer world in the way that it so desperately needs to be changed. I miss you. I love you. I hope you are safe. G’nite baby doll.

xoxo

Hello, 3:43 a.m.

 

Ronan. I am finally getting tired. I might be too tired to write so I’ll just say this. Wes Anderson is a genius. End of story. Officially the shortest post ever. I miss you. I thought about you a lot today. It’s hard not having you here, to do everything, that we did. I miss your laugh, so very much. Sweet dreams baby doll. I miss you. I love you. I hope you are safe.

xoxo

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New friends and extra lipgloss

Ronan. Now matter how low I get or how bad things sound, the bottom line is I will always put on lip gloss to go meet another cancer mom and her babe. That is what happened today. I got up out of bed. I spent the morning cleaning and doing laundry, getting things spotless for my sanity and Macy’s arrival. I showered. I dressed. I had planned to take your brothers to a movie during the afternoon. I checked my FB which I don’t really do, that often. I saw I had a bunch of messages on it. I only clicked on one. It was from another NB mom that lives in California. She reached out to me a few months ago, saying they were in Sedona and wanted to know if I would drive up to meet them. I told her of course, but our plans fell through due to her older boy getting sick. I hadn’t heard from her since, until today. Her message said she knew this was last-minute, but she was in San Diego for her little guys treatment and was wondering if I would like to meet up for a bit. I hesitated for a second, but then messaged her back and said of course. I went in and asked your brothers if we could skip the movie to meet up with this little boy and his mom. They both said, o.k. They are such great boys. They both asked a lot of questions. Who was this boy? How old was he? Did he have the same kind of cancer, as Ro? Does he have any brothers or sisters? Where does he live? I didn’t know much, but I answered them the best that I could. We piled in the car and drove off to meet our new friends at the train museum.

Ronan. Today was the best day that I have had in a long time. It’s during times like this, that I know you are still around. You could not have picked a more perfect day, for me to do the things I did today. Just when I am feeling in such a slump and so freaking sorry for myself, you give me a gift like today. A day where I got to hang out with the sweetest little 3 and a half-year old who reminded me so much of you. Where I got to look into his mama’s eyes and it was an almost unspoken conversation. I saw eyes that reminded me why I have to continue to do, what it is that I am here to do. I needed a good reminder and today I got all that and more. This mama looked at me a few times and asked if I was alright. If it was hard for me to be there, with her little boy. I just smiled and told her, “No.” I do really well in the cancer kid world, Ronan. I do much better in it, than the normal world that is so foreign to me now. This world fills me with a peace and comfort that I cannot explain. I spent the day with your brothers, Teddy, and his most beautiful mama. We looked at trains. We chased balls. We held hands. We laughed. We giggled. I felt alright. I felt alive and brave and I got all of this from a little boy who has the weight of the world on his shoulders, but you would never know it by the look on his face or the laugher that filled the air. I listened to him say things like, “Come on my friends!” as he reached for your brothers hands. I got to hold his little hand while we were crossing the street. I miss little hands, so very much. I talked to his mom a bit about what they have gone through. I listened to her words and the way they have had to fight for everything as far as Teddy and his treatment. The way she is the one, presenting studies to the doctors, demanding scans when they don’t want to do them, and answers when nobody wants to give them. I know I can fix this world and make it better for these families. I am more motivated than ever, to get this done. I have the vision. I have the dream. I will make this a reality. I will make this world less scary for these families. Today was a reminder that I cannot give up. That I need to stop feeling so sorry for myself because there are people out there who are here, fighting and who deserve better than what it is that they are getting. I know without a doubt, what it is that I am here to do and why. It’s what you would want. It’s what we should have had. It’s the reason why I can’t stay in bed and not wear lipgloss anymore. I’m not giving up on this world, these kids, or these families. I may take a few days here or there, to slump down into a really dark place, but I promise I will always come back to fight again. Thank you for the reminder today. Thank you, to Teddy and his mom for stealing my heart and giving me back that hope word just by looking in their eyes. That’s what I saw when I looked into their eyes today, Ronan. Eyes filled with such hope that I have decided I cannot ignore this word any longer. I think I can start to let this word back into my life again. Today, I felt hopeful, calm, and brave. Today, I felt you everywhere. It was a good day.

Macy is here. Quinn and Liam are happy. We all snuggled on the couch and watched a movie. Quinn is sleeping in-between your Macy and I. He fell asleep with the biggest smile on his face. I know why. It’s because he saw his old mom today. The one that can smile, laugh, and be playful. The one that can be brave and who can sit back and watch your brothers and who knows how they are going to go off and do amazing things in this world; all because of you. I can be alright in this life, Ronan because of days like today. Thanks for never giving up on me, no matter how crazy I may get over this never-ending pain. Thank you for giving me a good day, when I needed it most. I love you. I love you and miss you so very much. I hope you are safe. G’nite, little one. G’nite to our new friends, too. Thank you for being brave enough to reach out to me and for being able to see the light, through all of the darkness. The little rays of light, are the two of you.

xoxo

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

All the things I wish I’d known…

Ronan. Fucking fuck fuck fuck. We left AZ. Had to leave AZ. Just like we do, every summer. This year, I couldn’t get out of there fast enough. Last summer, I was in such a fog coming here. I think I was highly medicated. I don’t remember any of it, really. I left you at home. I left your urn and your ashes at home. This year, I didn’t. I put your urn at my feet in the front of the car with me. Safe and sound. I was not about to leave you behind this time. Who reads that last sentence that I just wrote, and is able to just go on with their lives? Who reads that sentence and just goes, “Oh, that’s nice, she tucked her child’s urn, at her feet because he died of cancer… I’m off to go shopping now and not help in this fight against childhood cancer.” I think a lot of people. I think a lot of people who still live in the world of puppy dogs, unicorns and rainbows. Those people, suck. I am thankful for those who read my words, close their eyes, are thankful for all that they have, but that is not enough. I am thankful for those people who do not just go on with their days, without thinking about Ronan or Ava or Esther or Ben or Liam or Hazen or Ezra or Saoirse… I could go on and on and on with the kids’ names that I know now. I am thankful for the people who take the time to donate what they can, because they know want to help against this war that we are in. I am thankful for all the love and support friends, family and strangers. Without all of them, things would not be happening the way that they are.

So, today we packed up our car and headed out of AZ. Out of our house that is slowly killing me. I could not get out of that state, fast enough. I could not take another day of walking past your empty room, not hearing the pitter patter of your little feet or your squeaky little voice. I don’t know how I’ll ever get used to not having you around. I feel like I am a shell of a person. I feel like I am a shell of a person yet I look back on last year and fuck… even that kind of scares me because I was in such a bad place. I think I spent the majority of the summer, in bed, crying. I think I was out doing crazy things like swimming in the ocean in the middle of the night and taking way too many sleeping pills. Looking back, I clearly was trying my best not to live. I seriously could have cared less. This year, I’m not better. Because you never get better from something like this. I’m just different. I want to be around to tuck your brothers in at night. Last year, I did not. And I don’t think it’s such a good idea to go swimming in the ocean, at night. But I am also aware that I still have that streak of crazy that exists in me and I never know when it’s going to come out which in turn usually means my pain needs to be fed by something other than sheer pain. Usually something crazy like a night swim or this marathon that I am running on Sunday and I have not trained a lick for. 26.2 miles without training is a little insane. But whatever. So is watching your baby throw up in bed from the chemo poison that is being injected into his body that is supposed to be saving him, but it turns out, is not. That is truly fucking insane. So is driving to San Diego with your baby’s body burnt to a crisp. Nothing is more insane than that.

We arrived here. Unpacked. Your brothers were hungry. We headed out to go to Costco but it was closed. Your starving brothers could not wait to eat and IHop was our best option. We ended up there where your brothers enhaled bacon, waffles, eggs, pancakes… you name it, they ate it. You would have loved our little breakfast for dinner outing. I was sitting there, thinking about Ava. I’ve been checking in on her all day through Facebook and her Caring Bridge. Nothing had been posted. Just as I was thinking about her, I got an alert on my phone. I read it, felt the color drain from my face, excused myself from the table and into the IHop bathroom I went to puke my guts out. I read the words, the Ryan House. Hospice. Not doing well. That was all I needed to see. It was if I was living last year, all over again. Fucking fuck. No. Not again. What is happening? Why is this monster taking all of these babes and nobody gives a shit? Because if they did, this would not be happening at the rate it is. Do you know what this looks like to us parents going though this? It looks like somebody is lining up these kids, one by one, and blowing their brains out. If that were the case, this country would be in an uproar. But because childhood cancer, is such a dirty little secret, everyone can just look the other way. That’s not fair. That’s not right. People need to start stepping up and making such a stir about this so that funding will be a little more fair. Give these kids a chance to grow up and get things like breast cancer or prostate cancer. Give them a freaking chance, you fucking idiot fuckwads.

Back to Ava. Back to the Ryan House. I’ve been quiet about this for a while. I am not going to say I am thankful that we got to go there, because no parent should be thankful that their child is dying, so they get to take them to this place. Ronan. The Ryan House, should not exist because kids should just not die. If only it were this simple. I did not think we were taking you there, to die. But everyone else knew around us. I thought we were taking you there, to get your pain under control. I was in shock. I still had hope. I heard the whispers all around me. I got the whole, “You are so calm.” Of course I was calm. You were not going to die. I was still going to fix you. I didn’t understand any of what was going on. I remember being confused as to why everyone was coming to see us. I felt like we were zoo animals on display. Like I was the mama bear in her den with her baby, hiding behind a glass wall, while everyone on the outside, was looking in at us. I didn’t know they were all coming to say goodbye. I didn’t figure any of that out until probably a day before you died. That we were not going home. I remember thinking that nobody knew what they were doing. Why was I the one asking for oxygen for you? Why was I the one calling your Dr. Maze to ask him what to do for you, in order to get your pain under control? Why were you getting all bloated? Why were you not peeing? Nobody told me this was all because your body was shutting down and you were dying. Nobody explained anything to me. And then it happened. Your little heart, stopped beating. Somebody came in after you had left. They brought in a tub of water. They said they were going to give you a bath. I remember looking up at them and saying, “No you’re not. I’m going to give him a bath.” I remember this person saying to me, “You are very brave.” I looked up, dumbfounded. “I’m not brave. I’m his mom.” I bathed you. I dressed you. I kissed you. I didn’t hold you. I didn’t know I could have. I didn’t know I could have rocked you. Held you or spent as much time with you as I wanted to. I wish I would have known that. I think I stayed in the room for a while with you. But I let somebody else pick up your body and take you away. I wish I would have done that. It was not anybody else’s job. But I knew none of this. I am so sorry.

Then we left the Ryan House. Bye! Have a nice summer! I think we were checked on and I know we were refered to a place called New Song. But nobody from the Ryan House ever mentioned the MISS Foundation to me, which blows my freaking mind. Ummmm… hello. They work with bereaved families. Ummmmm… hello. I know you are aware that they exist and I know you know who Dr. Cacciatore is, because she is a badass and truly has a gift for helping these families. Where was Dr. JoRo when I was at the Ryan House? Why didn’t anybody ever offer her to me, to hold my hand through what it is, that she knows best?? Why is it, that out of sheer desperation for my life, that I had to find her by screaming in bed one day, not able to get out and googling, What to do if you have a dead child in Arizona? I don’t know. This is what this woman does and she only does this for the fact that she truly wants to help these families. This is not about the money for her. This is only about taking her pain, experience, sadness, compassion, and using it for good. That is the thing that upsets me most. She saved my life, yet I had to find her on my own. There is a very good chance, that I would not be here if I had not found her. I thank you, Ronan, for helping me get to her. But it shouldn’t have been that way. Somebody at the Ryan House, should have offered her to me. She is a gift and I was in shock. I would have accepted someone to walk me through the hell I was about to go through. Instead, I went though it scared, abandoned, and alone. That’s the truth. There were so many mistakes made though out this whole your child has cancer, process. I am not going to stop until they are all fixed. Dr. Jo will be a part of everything that I do. She is part of my fixing the world, package. It’s as simple as that.

I went for a little run tonight. I talked to you about Ava. Please do everything I asked. Now is not the time to rebel, little one. She needs you. Take good care of her. I will try to help her mama in anyway that I can, but I feel helpless. There is nothing that I can do or say that is going to make this easier. All I have to offer her is I know what this feels like. And I am not dead from the pain. I am still here. That’s all I’ve got. That and I am just so sorry. I love you, Ronan. I miss you. I hope you are safe. Sweet dreams, baby doll.

xoxo

Fuck You, Cancer and a Fuck it all day

Ronan. It’s not time yet, right? No. Not yet. I still had a couple of days left with you. I woke up today, not knowing what day it was. I grabbed my phone and thought to myself, please don’t let it be the 8th. I let out a sigh of relief when I saw that it was only the 7th. The 7th I can deal with. The 8th I’m sad for. The 9th I’m scared for. It will be here before I know it. Everyone is scared. I got a text from Rita today telling me she was bloody scared for me. She said she is scared that I want to die the most yet. She said she is scared that I will forget our sacred ninja promise. I responded with the truth which is I want to die, every single day. But I won’t. I don’t care how painful this gets. I would not do something that would be so disrespectful to you. That’s really what it boils down to. Life is so precious. Dying by my own hands would be such a slap in the face to you. It’s the easy way out. It’s the selfish way out. I don’t take the easy way out with anything I do. And I’m not selfish. Except when I need to be ,which is only because I have to take care of myself sometimes. And sometimes taking care of myself makes me seem selfish. Fuck it. I don’t really care. Is that selfish? Probably. But I think I’ve earned that right. I won’t do that to you, Ronan. I won’t off myself like I often dream about. You know I think I failed you. I told Rita I will not fail you, again, by not saving myself. I will not let cancer destroy everything that you are trying to do in this very broken world. Cancer may have taken my soul, but it will not take my spirit. I won’t let it, Ro. I won’t let it for you.

Today, we slept in a bit around here. I fell asleep easily last night, without Ambien, but it was late when I did. I fell asleep and stayed asleep which rarely happens. I needed it. I woke up to your over-anxious brothers, so excited about the day. We showered and got ready and headed out. We spent the day exploring the town, eating the freshest seafood I’ve ever had in my life, playing on the cold beach, and I went for a run. I keep trying to remind myself that I do have a marathon coming up to run. Ummmm… just a little 26.2 miles to do. I have not run, in months. I did 6 miles tonight and it was so easy, it was stupid. Well, not stupid because it felt good. I think I could have kept going. I keep telling myself running is 90% mental, right? I may have just made that up in my head, but it makes me feel better. It makes me feel like I can run this marathon, without training for it because I am surviving you not being here, which is mentally hardest thing one can go through. I can do this marathon. All I’ll have to do, is think of you the entire way through and I will be fine. I think a lot of people are coming to San Diego, to cheer me on. The more the merrier. I will need all the screaming and FUCK YOU CANCER!!! that I can get.

Rita also texted me to say that a lot of people are wanting to do something for your death day. The 9th. She wanted to know if it was alright. I told her of course. People are wanting to let balloons go, which of course I am more than alright with. How about a black day with colorful balloons? Preferably purple balloons. I would like to fill the sky with them for you. I like that. I’m wearing black. Black is sad. Black is the color of grief. But black is also powerful, soulful and strong. For your death day, black fits. White made sense on the day we had your service. But not for the day that you died. There is nothing beautiful about the day you died. I’m going to wear black on this day, for the rest of my life. It is the only thing that feels right to me.

As for other things…. is it too much to say I think that everyone should just stop everything they are doing for the day? If I had my way, the entire world would go black. What did your Sparkly say to me a couple of weeks ago that made me laugh out loud? That maybe he should listen to me and just have a “Fuck it all day.” A day where you literally just do whatever you want and say fuck the rest of the “things” that you are supposed to be doing. Just for one day, blow it all off. Blow it all off because everyone deserves to have one day, where they are so grateful for all that they have, that nothing else matters. If I had you here, if I had you here and Liam and Quinn too, I would to this. I would listen to this and spend the day, totally lost in the world of the three of you. I would have kept you home from school. We would have went to do something extra special and fun. Rules and time-outs would not have existed. I would have told you 100 times how much I love you, how I was the luckiest mama in the world, how there is no place that was more important to me, than being with the 3 of you. It would have been the best day ever.

This is all I can do tonight, little one. Tomorrow is the 8th. I have to figure out how to wrap my head around what is to come. I love you so much. I’m so sorry. I miss you. I hope you are safe. Sweet dreams, baby doll.

xoxo

If kids can fight cancer, I think I can run a full marathon, without training for it.

Ronan. Headache. Can’t sleep. Usual insomnia. Liam is still not feeling well. He has some nasty little bug that is going around his school. He stayed with your Mimi and Papa today and is staying with them tonight. He’s contagious and I feel like can sometimes use the break from Quinny. I had some things to get done today and had an appt. with Dr. R for your daddy and I, then Quinn had his time with her as well. It was really good for him. She is really good for Quinn. He really clicks with her and she makes it safe for him to talk about you. They worked on a collage about you today. It’s not finished, but they cut out a some pictures from some magazines. Quinn picked out some things that reminded him of you. So far, he has a picture of an alligator, from that time we went to Disneyland and went on the jungle cruise. He found an add for Phoenix Children’s Hospital and had that on there. He also cut out a star and the word, Cancer. FUCK. This is so not fair. This is so not right that your little brother, gets to sit in a therapist’s office, and cut out the word, Cancer, because his little brother, died from it. I know that nothing will make this right, Ronan. But I also know that your brothers need to be talking to someone other than us and I feel like Dr. R, is a really good fit. I have not taken Liam yet because I wanted to get Quinny settled first. He will go as well. I think this can only be a good thing, for the both of them. For all of us.

I hiked today. It was hot. Around 90 but I didn’t really notice. I never do. Nothing is hot enough/hard enough/hurts badly enough. I know what real pain feels like. It does not come in the form of Inferno Hiking. I found the little gift that somebody left for me at the bottom of the trail. I am assuming it was for me. It was at the bottom of my trail, very strategically placed. Sadly, I cannot accept your little gift. Or maybe sadly for you, but not for me. I am fine with saying, gee… thanks but no thanks. I have my own Roligion, to follow. See photos below:

I left you some Ronan bracelets instead. This was the nice version of what I decided to do today. The not so nice version, was not very pretty. I am actually very proud of my self-control. I am actually proud that my anger did not take over. It made me laugh instead. I needed that after coming out of MY church today, drenched in sweat. I felt better after I went to my church and talked to my Ro. I do not need a book to tell me how to do that. Why haven’t people figured that out by now? Why does the Bible/Jesus thing keep getting pushed on me? I do not like when things are shoved down my throat so just stop. I’m never going to get on board with that book of make-believe. That is what it is to ME and if that offends you, then so be it. I am not here to tell people what is real or what is not because the bottom line is, obviously I JUST DO NOT KNOW. All I know is it does not work for me. If it works for you, great! If it works for you, that makes me happy! More power to you! I have my own beliefs and this is enough for me. It is more than enough. I will get through this, with my OWN book, in my OWN church, with my OWN beliefs. I am proud of what they are and honestly, I am still learning, so I am proud of that too. They are changing and I can feel my own spirituality growing. I am o.k. with marching to my own beat. I am sorry if you are not, but that is not something I can control. It is disrespectful to push your religious beliefs on another, especially when they are grieving. An opinion is one thing. I can be respectful of opinions, but pushing is not o.k. It makes me sick to my stomach. So just stop. I will find my own fucking way. Ronan will not let me down. I know this.

Ro baby. Do you know what else happened today? I sat at Dr. R, with your daddy. I was quiet. I had my guard up as I often do in there. I cried a lot. I don’t like to listen to how much we are both hurting. It makes everything 1000 times worse. I don’t like your daddy to hear how much pain I am really in, out loud. It’s much easier for me to keep it to myself. To shut people out. To be totally vulnerable, is so brave. I’m not that brave when it comes to vulnerability. I am a good pushing everyone away. Except for a few people in my life. I have a few people that I don’t push away for some reason. A few is all I really need as of now. I think Dr. R is kind of a loss for what to do with us. Because as I told her, we don’t have normal marital problems. We have one problem and that is a dead child. And how do you fix that? You don’t. You can’t. It is the one problem, that cannot be fixed. As we were getting ready to leave there, we were walking out and she goes, “You should come and run the San Diego Marathon with me, June 3rd.” I just looked at her and said, “I haven’t been running. At all. I haven’t trained in time to run a full marathon.” She then goes, “Well, just do the half, I’m doing the full.” A huge smile fell across my face. Running a marathon, without having trained for it?? “I’m in. I’ll run the marathon with you. Not the half, the full.” She said, “Look what I have to do, to get you to smile.” I left there, smiling alright. I left there and had about 50 different thoughts run through my mind. I ran them all past Rita. I called her and said, “I’m running a full marathon, June 3rd, without training for it. Except I’d like to change the name to, Maya would like to die, so let’s see if running 26.2 miles, will kill her.” She did not like the name of the marathon. We came up with some better one’s instead. We came up with a few really good ones. Like how about, “If kids can fight cancer, I think I can run a marathon, without training for it.” Or Maya’s Marathon of Madness. I kind of really like that one. Rita and I came up with some genius ideas tonight to make this, really, really fun. And maybe raise some money in the process as well to get Dr. Mosse’s trail funded. It’s time to start saving some babes. I can totally do this. I have you to push me and I know you can get me through anything. ANYTHING. So, it’s a done deal. I registered tonight. June 3rd, I am running the full marathon in San Diego. I’m excited. Rita and I are going to hash out our plan of action this weekend. Cancer fighting ninja’s in full effect. BRING. IT. ON.

You’re daddy thinks I’m nuts. So does Rita. She called me a lunatic today. I’d agree with her. I’ll be the first to admit it. But it makes me feel spicy. My craziness, reminds me of you. And why not do this? Why not? I have nothing to lose. Not a thing. I think of you, and all that you went through. I think of you, and how you’ll never get to run a marathon. I will run this for you, because I can. Because I am alive so that simply means, I can. I am alive and I am healthy so why the fuck not?? It’s good enough reason for me, Ronan. I don’t have a reason for lame excuses. I want to run this marathon, so I’m going to. End of story. I said after the NYC marathon, that I’d never run another one due to it being so hard. Well, back then, I did not know what real pain felt like. Now I do which is why I know this marathon is not going to be a big deal. I’ve totally got this. Go big or go fucking home, right?? Right.

This is all for tonight. It’s late. I miss you. I love you. I hope you are safe. G’nite sweet boy. I miss you so much that at times, I don’t think you were real. I’m sorry for everything.

My very own baby unicorn!!! With a rainbow and everything!!! Fucktards beware!!!

 

Ronan. Remember how I said things were going to get worse, before they got better? As if I thought that things would go from bad, but eventually they would not be so bad. I think I was totally wrong. That is not how this grief thing works at all. It is not a roller coaster from down to up, up, up. It’s a roller coaster of all things crazy, inconsistent, and fucked up. There is no constant up. It is a roller coaster of up, down, up, steady, down, up, and a huge drop off the highest point possible all to come plummeting down, not knowing when you will stop falling. You live in terror that you will not stop falling and you wonder how much further down you will go before you just simply cannot take anymore.

I know what I am capable of. I know that when I’m on top of my game, that I can move mountains. I have no doubt in what I am here to do/will do for you. But I also know when I need a break from all of this fighting/busy work/kicking cancers ass 24/7, even in my sleep. I have not really had a break from this since we returned home from San Diego, last August. I know what is right around the corner. I know what Jo has tried to prepare me for. I have listened to everything she has said, but it’s just now that I am actually feeling her words, as they slowly sink in. They are sinking in, in the deepest way possible. They are sinking in with the reality that today, after deciding a few weeks ago, that I would not like to die… today I told myself I had changed my mind. I’m allowed to do that, right? Today, I decided that I would indeed once again, like to die because I’m just plain tired and everything hurts so badly again. I’ve been walking around in a fog that I cannot seem to lift. I have spent the entire week, trying to be mindful of the way I have been feeling and just letting myself feel it. I have not been overdoing anything, but even a trip to get a passport picture taken, feels like a walk to freaking China.

I have spent a lot of time alone. With the exception of being around your brothers/daddy which feels like a lot of work to me once again. I have hiked for hours upon hours during the day. I have refused to eat as my appetite is once again, gone. Insomnia is only relieved by stupid Ambien the past 3 nights. I’m trying not to give in, tonight. I’m listening to the sound of your sweet brothers, sleeping beside me.

I lost/had my iPhone stolen today. I don’t even care. I only care for the fact that I of course feel like it was my fault. In my fucked up head, normal people without dead kids, don’t get their cell phones stolen. In my fucked up head, this only happened to me because I have a dead kid and I cannot think straight. In my fucked up head, this would have never happened to me, if you were still alive. In my fucked up head, I think all these things, are true.

So, iPhone gone and what’s a girl to do? I don’t really know, but I feel like I will go back to hiding out. I feel like I cannot even muster up the energy to pick up the phone for a while. I’m sorry. I feel the need to up plug from everything as I am fizzling out. No Facebook. No writing. No technology. I don’t like feeling this way but I cannot ignore it. I feel really tired but sleep does not come. I’ve been begging for it all week. I feel like I cannot breathe again. I think I felt like this a few months after losing you. I think it got better for a while, but now it is back and it feels worse than I remember it. I think this is just how life will be from now on. 5 steps forward, 10 steps back. Fall down, get back up. You never stop falling down. You wonder how many times you will be able to pick yourself up. You question your strength, your determination, your worthiness. You question every single thing, about yourself. You spend a lot of the day, fighting with the voices in your head. You spend a lot of the day, crying over the mama word, you will never hear again except for on the video that you watch on your computer of you, over and over again.

Ronan. I think I started that a while ago. I’m not even sure when. I guess on Friday. It’s Monday now. I’m not sure what I’ve done. Just being I guess. Hanging out at home a lot. Not picking up the phone. A lot. Hiding from the world. I’ve been trying to pull my self out of this deep, deep place of grief that I can’t seem to shake. I feel sad all the time Ronan, but I can manage it. I can pull myself out of it, but this has been on going for about a week now. I spent some time with Dr. JoRo. It was good, as always, but I think she is even a bit worried. I had her spend some time with Quinn, to talk about you. We sat outside on the patio and she asked him some questions. He laid on my lap and tried to answer them the best he could. The whole thing lasted about 15 minutes before he got bored and ran inside the house. The diagnoses was: a very happy kid who sometimes gets sad over missing you but thinks he has a good life, mom, dad, and twin brother. And he knows he can talk to us anytime about anything. I just looked at Jo and said, “Look. I’m worried. I don’t want to not deal with this now, and for it to come up in 10 years from now and develop into serious issues.” She looked at me and said something like, “He’s happy, Maya. He’s a good kid. You guys are such great parents, just keep keeping the communication open. What you’re doing, is working.” That lessened my worry a bit. It is almost impossible to really worry about your brothers. That actually worries me a bit 😉 They are such good, kind, smart boys. No discipline problems, grades are awesome, they are so into their baseball and doing so well, they are so respectful and loving… I need you here to shake things up a bit, Ro! It’s all too calm, quiet, and sweet. Nobody is rebelling, nobody is being naughty, nobody is causing trouble. I guess I’m going to have to start stirring some things up, huh. I’ll just tell them Ronan told me to do it;) Nobody could argue with that!

I had a bad day on Friday. A really, really, awful, shitty, motherfucking, fucking bad day. Your daddy. The sweetest of all daddies, knew this. He knows better than to come home with flowers for me anymore. He came home with a small plastic baby unicorn instead. He told me I could carry it around with me to stab all the fucktards with in life. Even that, did not make me laugh…that’s how upset I was. I can laugh about it now, which tells me I’m not as sad as I have been. We had a date night on Saturday night too. I basically spent all Friday/Saturday in bed. By the time Saturday night came about, your daddy practically had to rip me out of our bed to go and eat some food with him. I don’t remember much of the car ride because I was being really quiet and I was crying. I remember telling him how I feared for my sanity. That my head was foggy and I was scared. He quietly told me that he did not fear for my sanity. He complimented me on getting all the laundry done/dishes cleaned up. This made me cry harder. Seriously! This is what you are proud of me for? Getting the laundry done/dishes cleaned up! This has got to be a joke! Those are things in my old life, I could do in my sleep. Now it is such a challenge that it is my big accomplishment of the day?! I would have lost it right then and there if he hadn’t brought up your brothers. About how amazing they are. How great their grades are, how great their sports are, how nice and respectful they are. How we couldn’t ask for better boys. I started to cry harder at this. This makes me so sad. They are the nicest boys, so why them? Why did they have to lose you? The 3 of you, together, was absolutely perfect. It was magical. It was our heaven. I get to dinner with your daddy, I sit across from him, and I pick at my food. I can’t eat. Tears are pouring down my cheeks and I feel like I cannot swallow. Your daddy just looks at me and tells me he’s sorry. What more can he say? Nothing. Sorry is the only thing that makes sense. We drive home and I pass out, without Ambien. I sleep for a solid 8 hours. Sunday rolls around and I tried to do productive things. I cleaned out my closet. I cried a little less but not much.

Monday is here now. Monday was o.k. I cried a lot today but my head felt a little less foggy. We took your brothers to go and watch a baseball game that was being played by a school friend of theirs, older twin brothers. It was nice to sit outside with them and their mom. It was nice to try to escape and unwind a bit. Your brothers had a nice time which I always enjoy, seeing. It makes me smile. Tomorrow, I will see Dr. JoRo before she leaves for about 2 weeks. Not freaking out about that at all (totally freaking out). Tomorrow, I plan on seeing Dr. Jo and then going on a very, very long hike. I’ve got to figure some things out and hiking is where I seem to do it best.

I love you. I miss you. I hope you are safe. Sweet dreams, baby doll.

xoxo