Texas and a Rockstar

Ronan. I am home from Texas. I am beat from all of our traveling and feel like I could sleep for a week. I went there for one reason and one reason only. I ended up leaving there being reminded of why I choose to do this. Of why I choose to continue this and not to give up. Because this is a choice that you have made for me and nobody else. I will forever listen to you. I had the chance to meet many other parents who are fighting this fight. Some of their kids have passed away. Some of their kids are still fighting and fighting hard. Nobody is giving up. If anything, these parents are fighting even harder for what was taken from them. Whether it be their child’s life or their child’s health. Nobody is going anywhere. None of these parents are giving up until childhood cancer starts getting the attention it deserves and until a cure for Neuroblastoma is found. No parent should have to endure what we have all had to endure. No child should have to fight childhood cancer, the way you did or the way these kids did or are. It’s not right. It’s not fair. And time is not on anybody’s side. The wheel of treating childhood cancer is a very slow moving wheel and if it continues to stay this way, nothing will change. This is not acceptable.

I was able to spend some time with the person I consider to be my ultimate Rockstar; besides you. I spent some time with Dr. Giselle Sholler. I’ve met her before, but this time I had the chance to spend some real quality time with her. She just might be one of the most amazing human beings put on this planet. And I’m not exaggerating. Not only is she a bloody genius, but she is so personable, normal and funny… all which blew my mind. We talked about a lot of things. Neuroblastoma things. You things. Yoga things. Surfing things. Family things. Disappointment things. Ultimate dream things. We share a lot of the same dreams. We laughed a lot. I was my bravest and strongest when talking about you and what it is that I want to see done. My ultimate dream. I did not cry. I held it together and gathered all of my strength and did not crumble. I was strong for you. I was strong for me. I was strong for the both of us. I think I did alright. Everything I am doing, is for you. You would not want this cancer world to be this way for anymore kids. You would not want this cancer world to be this way for anymore families. We went through enough. We went through way too much. We should not have been so alone, scared, broken, and left to fend and fight for every single thing, the way we had to. You know we can fix this and make this better. I will fix this for you because this is what you would want. I will fix this for you, because I can. I will fix this and make this world less scary and more HOPEFUL. (that was for you, Rita.) Hope. The word that seems lost on me but slowly it is starting to make its way back into my life a bit. It’s hard to believe in hope when all your hope was stolen away from you. I will never love that word again, but I am trying not to vomit every time I hear it. I had so much hope for you, little one. This is certainly not how I hoped this would end up. Which is why this is not the end. I will continue to go on because stopping now, would be unacceptable. I won’t let you down, Ronan.

I have been sleeping. Like really sleeping. Falling asleep easily at night and staying that way. No Ambien needed. I don’t know why I go through spurts of this but I just do. I still have moments all the time where I’m just about to fall asleep and I drift off, thinking of you. Just as I am about to fall asleep, I’ll have a vision of you dying and I am jolted out of my sleep, feeling like I have been stabbed and cannot breathe. Things like this happen to me all the time. I am sure it will always be this way. How could it not be? I came home from Texas feeling better than I have felt in a while. All that flew out the window as soon as I walked into our house. It’s hard for me to be here, without you. It brings your daddy comfort and peace. Our house, does not do this for me. Our house fills me with a sadness that never seems to lift. I think it slowly might be killing me. But I will find a way to manage this sadness as I am not about to uproot our family from this place that everyone else, seems to find comfort in. Especially your brothers. I think leaving here, the place where they seem to only have happy memories of you, would be really hard on them. I’d rather have it be hard on me, than them. So I will just continue to do what I am doing which is spend as little time here as possible, during the day when I am alone. And when I am here with your brothers and daddy, I will try to focus on their happiness, giggles, and laughter. Or I will sometimes give myself a break and pull the sheets over my head for an hour or so like I did today. I felt tired today for no reason other than I think I was just tired of missing you.

I was a good mom, today. I went with your daddy, Uncle Jay, Charlene, Liam and Quinn, to breakfast. They all rode their bikes. I ran. I ran beside Liam and picked him up when he fell. A fall that happened so hard and so fast, that I ended up falling on top of him as I was running really closely behind him. He was o.k., just scared. He still is not a big fan of the whole bike riding thing. Quinn does it so effortlessly. Liam does not. He is still wobbly and unsure of himself. Our bike rides always kill me because they remind me of how much you loved to ride your bike. How much time the two of us spent, practicing and how proud you were of your bike riding skills. You would have totally had your training wheels off by now. You would have ridden circles around Liam. I cannot believe you are not here, to do this with us. Bike rides will never be the same for me again which is maybe why I chose to run. Either that or maybe because I have a little 26.2 miles to run in less than 2 weeks. Errrr…. I’m not sure how I’m going to pull this one off. I might be getting a little nervous for it only because I remember how hard I trained when I ran my one and only full marathon in NYC. I trained like crazy and I still thought it was the hardest thing I had ever done in my life. I have not trained a lick for this one. I guess I feel like I am running a marathon, everyday of my life now. That is how much having you gone, hurts. Nothing can be as hard as losing you, right? I think I’ll run this thing numb while pouring all of my anger/hurt/heart and soul into it. Those things alone should get me through it. Those things and knowing that I am doing this for you and all of those other kids who will never get to run a marathon because they were cheated out of life. If I don’t die doing this, I think I might be kind of awesome for doing this. I think it might be something that will make me smile. 26.2 here I come!!

I spent the rest of this Sunday, being productive. I have a board meeting tomorrow night so I met up with my secret board member (Becca) and my other awesome secret board member (thiscrazychickwhoskydivessolo) to go over some things. We sat around and to updated some things on your foundation website and hashed out some other details about some things going on. I had a breakdown in the middle of a parking lot due to a phone call that I had in my car. I was thankful for the friend that was there to give me a hug when I needed it. It’s not always good to be alone in dealing with this. Sometimes a hug, an ear to listen, and a shoulder to cry on, help. I was thankful for that Rita today, as I am every single day. How did you know, I needed her so much when I wasn’t even aware that I needed her so much? I don’t know where I would be without her and that is the Rohonest truth. I am lucky to have her.

Your brothers are sleeping. Your daddy is out for a bit seeing some friends. I am tired and have a lot to do this week. I need to get some shut eye. I love you. I miss you. I hope you are safe. Sweet dreams, Ro baby.

xoxo

Ava is Love

Hi little lovies. I’m back from Texas. It was a great trip. I will update you soon. My head is spinning with a thousand different things that I need to do, that need to be done, lots of plans to put into place. My head is spinning but all I can do is sit here and think about this sweet little Ava. She lives Arizona. I know her, not well, but well enough. This is another time that I wish I had a magic wand to make this all go away. I don’t. This is why there has to be a cure for this nasty disease, soon. No child deserves to go through any of this. Can you all please keep Ava in your thoughts, hearts, prayers, or whatever it is, you do. She has been fighting so hard, for so long. This is breaking my already broken heart. Thanks, friends. xoxo

http://www.caringbridge.org/visit/avaholder/?ref=nl

Let’s hear it for 5 dollar Friday!

 

 

It’s so easy! It’s 5 dollars! We are so very close to having Dr. Mosse’s trial funded. There’s only 16 days left, until I run 26.2 miles, without having trained for it. There is still plenty of time to donate to this great cause. Let’s save some kids! Every dollar counts and together, we can make a huge difference!

http://theronanthompsonfoundation.com/donate

Thank you so much!

xoxo

The eagle has landed!! Or maybe just Maya has landed in Austin, Texas.

 

Ronan. I had our white party, yesterday. I had it solo and it really wasn’t much of a party at all. But I wore all white and just did my normal, everyday stuff. I didn’t bring it up to your brothers. They don’t need to know every single one of these dates, all in a row, the way I do. I will protect them from what I can and the date that we had your service last year, didn’t seem like a day I needed to remind them of. They have been reminded of enough lately. My party didn’t last long, my party wasn’t very fun. I don’t think P Diddy, would have enjoyed it. I am glad he didn’t come. I spent the majority of yesterday, unpacking all of our suitcases and doing about 20 loads of laundry. I am anal like that. I needed everything to be put away/clean so I could feel o.k. about turning right around to hop on another flight. I am in route to Austin, Texas as we speak, but due to US Airways sucking balls, our flight has been massively delayed.

I am heading out to Austin, Texas to go to the Dell Children’s Medical Center for the 2012 NMTRC Symposium. I am going to listen to them talk about the latest in genomics-based personalized treatments for neuroblastoma in children. You see, when you believe in something or someone as much as I do, you will do whatever it takes to support them and learn as much as you can, about what they are doing. Even if that means surviving the worst month of the year, being beat down, tired, numb, sad and alone; but still continuing to move forward. I believe in Dr. Giselle Sholler this much. I believe in her, so much that I will do whatever it takes to help support her in whatever way I can. As of now, going to this conference is my way of saying thank you to her. For all that she is doing. It is my way of supporting her and it is a great way to learn the everything I possibly can, about what she is doing. Yes, I am tired. Yes, I just had a brutal past week. Yes, I would like to just crawl in my bed and not come out for a while. Yes, I probably need a break. But now is not the time for this. Right now, I have work to do. Right now, there is no stopping. I am too angry at this disease to stop and come up for air. I will eventually, but not now. Dr. JoRo texted me to see how I was doing. I told her I was in the zone. She told me she was worried. That my “zone,” makes her nervous. That she feels like I just got though the dates of hell, and now here I am, off again to do more, more, and more. I told her I knew. That I was nervous too. I told her I expected to have a breakdown next week. But not this week. This week I have some stuff to take care of. This week I can power through because I am strong even when I am not. I am doing this week, because this is what comes along with still taking care of you. I say this all the time, but this is my way of taking care of you. I will always put you, before myself. Always.

So yesterday, I played catch up all day. I got everything in the house, taken care of which in turn will lessen my anxiety and it will be nice not to come home to a shit storm of suitcases/dirty clothes, everywhere. I could not handle that so I powered through the day. I slept last night, off and on. No Ambien needed. I think I mostly tossed and turned. I sent some emails at some very vampire times so this tells me I really did not sleep at all. Today was more of the same stuff. I finished packing. I ran to Safeway to get our Hallie a little something for her birthday. I dropped it off at Green Cleaners for her and got to run in and give my friend a hug. She is my friend and she loved you. I think I made her day. I hope so, because she often makes mine. Whenever I’m having a bad day, I will run by to see Hallie because her mouth and her sass always makes me laugh. Laugher to me, is priceless. Not many things make me laugh anymore. She always does. I hope she had a nice birthday. She deserves to.

I am finally here. I am tired. I spent much of the flight with my head buried in your blanket, crying. Tonight, I am beating myself up. Tonight, I am filled with we should have done this. Tonight I am filled with, why didn’t we do that? Tonight, the only voice I hear in my head is I didn’t do enough to save you. In my irrational mind, if that were true, you would still be here. I know this is not logical. I know this an impossible standard to live with. I see how absurd this all sounds. It’s not a fun place to be, but this is where I am, as of tonight. I hope to wake up tomorrow, wearing a new set of glasses that seem less foggy and hard to see out of. Sometimes, things get really blurry and foggy with these glasses of regret and shame on. Maybe I just need some sleep.

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

xoxo

I’m having a white party tomorrow. Do you think P Diddy would want to come?

Ronan. Do you know how I feel tonight? Hollow. Empty. I swear, it’s just one thing after another. I just had a Mother’s Day that no mother would ever want. All after your death day, your birthday/the day you were cremated (on your fucking birthday), Mother’s Day, and now tomorrow, is the day we had your fucking services, last year. May is a sick fucking joke. Next year, I am going to Iceland for May and living in a fucking igloo and ignoring May, all together. I came home from our trip, numb. I am totally numb again. How can I not be? I’m numb without the help of any anti-depressants. The one’s that everyone wanted to numb me with and still want to numb me with. I’m still here screaming that I don’t want to be numb. I will feel this, the way I am supposed to feel this and not by taking medications to help me not feel this. I want to feel this. I deserve to feel this pain. I am strong enough to handle it, no matter how much it hurts. I think my body is having a natural numbness physical reaction, all on it’s own. Because these dates, right after another, are just too much.

Mother’s Day was banned. Well, at least it was in my head. I let Liam and Quinn still think it was happening, because I don’t want to ruin everything for them. I took Mother’s Day and turned it into a day, all about them. I had a Liam and Quinn day and didn’t make a peep. I don’t think I even cried. See, I told you I was numb. We went to a Red Sox game, which they LOVED. We went and had a BBQ dinner at our friends’ house and they loved that just as much. We let our 4 kids run around and play with each other, but it still should have been 6. We sat with our friends into the night, talking normal talk and cancer talk. That’s the way it will always be. But it was easier with these friends, to be around them on Mother’s Day. I took comfort in all of our sadness on this “Happy Day,” of the year. I sat and thought a lot about your Fairy RoMo. I texted her it was indeed not Mother’s Day but Fairy RoMo day instead! I told her how you would have went craaaaazy over her Goldilocks hair and I know she would have loved you like her own. I am changing Mother’s Day to Fairy RoMo day. Because the love/kindness/support/and heart of your Fairy RoMo should be celebrated on this day. So it was, for her. I let my thoughts soften a bit while thinking about all the beauty that just exudes out of her, all the time. Like there is just sparkly glitter falling from the sky, when she is near. That’s how I feel anyway. It makes me feel peaceful, happy and inspired. There is that lucky world again, Ro. I am so lucky, to have her in our lives. Thanks for bringing us to each other. Another one of your little gifts, I know.

We made it home now and all I want to is run screaming back to Maine. Preferably Cape Elizabeth where I totally left my broken heart. I could see my broken heart mending there, quite well. You know what I felt while we were there, besides sad? Peaceful, calm, quiet, relaxed… I felt the pieces of me, that I miss so much. Your brothers felt it too. For such an awful reason to go away, Ro baby, it was the best place we could have possibly went. Maine and Cape Cod. Your brothers were so in their element there. They were so happy and carefree. They were so sweet and we spent so much time, outdoors playing in the beach, on rocks, on logs, in the water, in the woods, getting lost with each other and slipping into their childhood that they should know. The only childhood they should know where their baby brother, does not get cancer and die. It should have been the 5 of us there, Ronan. My heart is ripped to shreds that it is not and never will be again. But your brothers, they are happy. I guess that means your daddy and I are doing a good job, despite all of this. I don’t know how, but we just keep skipping along, not missing a beat because now, only their happiness is what matters to me. Mine can wait. I can put mine on hold, forever. Liam and Quinn will not be robbed of anymore happiness. They are too good of boys to have anymore hurt come a long. So, Ro… I still cry in front of them. But not as often. I laugh more with them and hide all the guilt that washes over me when I do. Guilt that they do not need to see or hear about. Adult guilt that I hope they never have to know about, in this way. Your dead child guilt where everything you do feels wrong… even telling another little boy at a hospital how brave he is while you are in visiting him. FUCK. Did I really just tell him he was brave. OH MY GOD. I only used to tell Ronan that. I just betrayed, Ronan. Fuck. I have to leave. I do. Tears pouring. Ronan. I’m sorry. You were the bravest little boy, I’ve ever known. I’m sorry if that hurt your feelings. I tell you thinks like this all the time because the guilt never goes away. It’s heavy to carry but that’s just the way it is. Once your child dies, you don’t stop taking care of them. It just continues on in a different form. I still have 3 kids to take care of. Why else would I be doing your Foundation, Ro? My number one reason is it is my way of still being your mom, still taking care of you, and still doing a really good job at it. A job that is going to be done, so well due to how much I love you and you love me. This is why your foundation will change things. Because our love is powerful enough to do so and because I promised to fight for these kids and families until things start to get better. Like a freaking CURE for Neuroblastoma. Let’s start with that. That is what we are going to do with our passion, drive, energy and love. We are going to help these doctors but we are also going to help these families. No family should feel so alone in this, the way we did. It was wrong, wrong, wrong. I have a big list of things that need to be fixed. I’ve been working on that list with Dr. JoRo. We will get to each and every thing, one by one so that maybe a family will not just feel like another number. They deserve so much more than that.

Tomorrow is May 15th. The day we had your services last year and I remember NOTHING about it. I think I smiled a lot. I think I did the “Thank you for coming.” I think I thought I was floating on air and I probably was. I wore white. Everyone did. So for tomorrow, it only makes sense to wear all white again. I’ll do this, on this day, every year for the rest of my life. I’m having my own White Party and P Diddy is not invited. Unless he wants to donate a fuckton of money to Ronan so we can start to put our master plan into place. The master plan starts soon. I’m running with it because I have to. Because it is a good idea. Because it is so needed. So, P Diddy, you can come to my White Party tomorrow but be prepared to bring your big fat checkbook. I only need about 10 million dollars. My White Party might suck compared to the fancy one’s you throw every year. With all your fancy people, cars, clothes, etc…. My white party is just going to be me and my son’s Urn. We might have a dance party together. He loved to have dance parties. My party will probably involve tears, but they will be the saddest tears you’ve ever seen for the most beautiful little boy who ever lived. They don’t all have to be sad, they could be happy ones too because I think you might come to the conclusion that my White Party kicks the shit out of yours just for the cause alone. You know, just trying to save some kids’ lives. Cancer Kids who live right here, in the U.S.A. We’ve got a lot of problems of our own, right here. I wish you celeb types would stop and look around here. You could help save so many of these babies who don’t even know how to fight, but they are the strongest fighters I’ve ever seen in my life. They are the true heroes, warriors, fighters. They deserve to have a strong voice to start stepping up and helping them. They deserve to have a chance at growing up. I don’t want anymore families to go through what we have gone through. What we have lost which is everything. Ronan was EVERYTHING to our entire family, not just me. He was everything to Woody, Liam and Quinn. I don’t want what happened to us, to happen to anyone else which is why people like P Diddy need to start helping. People listen to celebs.They need to start focusing on Childhood Cancer. It is worth fighting for with everything you have. Because what if it were your child? Wouldn’t you want to know, the best of everything was out there and the survival rates had improved?? Of course you would but this takes work, money, research, education, and dedication. All of those things seem so easily accessible when you look at these kids whom you are fighting for. Each and every one of them, are worth it and they need to stop being overlooked.

Yeah. That would be my rant and rave for the night. (shout out to AMBIEN) which I have not taken in weeks, but tonight, coming home to your empty bed about threw me over the edge. I needed a night to peace out. So, tomorrow is an all white day for me. That’s what I’m doing. I also might just take Ro’s Urn out with me everywhere I go. I’m kinda serious about that. I do need to invest in that baby Bjorn. Grocery store, here we come!!!

G’nite Ro baby. I miss you. I love you. I hope you are safe. I’ve come to the conclusion that you were just too perfect and beautiful for this world, so you are someplace so much better… just waiting for me. I’ll see you when it’s my time. I love you, little man.

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