Back in AZ with a Birthday to celebrate. Or not.

Image

Ronan.  We are back home and I am almost done with the whole holiday/celebrations of all things that still feel weird without you. My birthday is Saturday and I promise you I am trying to have a super good attitude about it, but I don’t really feel much like celebrating.  This does not fly with your daddy as all he wants to do is make sure my day is overly the top special.  What is the nicest way to tell him that over the top special to me would be hiding in bed all day, under the covers?  I can’t do that though.  It would break your brothers hearts so I will suck it up and do what is best for them.  I will smile when I blow out my candles and make the same wish I do, every year. The one where I just hope so much that you are alright, safe, and hope that someday, I will see you again.  I will smile for the picture that I know will be taken and I will forever wonder how in the world I can look so happy, in a picture when I feel like I am still so broken, sad and shattered.  It truly is amazing the things we as adults can do to survive such horrific pain.

Washington was all things perfect. Well, almost;) I basically go there and hibernate for the winter.  I feel like I did a lot of sleeping, which I never do well here.  Every night was the same as I would crawl into bed with Poppy and pass out until she woke me up.  Quinn and Liam have their own bedroom there, but they prefer to sleep in my room with me every night in another bed that is in the room.  It’s like a big slumber party and is one of the things in life I love so much.  Every morning when Poppy would wake up and I didn’t want to, Liam would grab her and say, “Mom, do you want me to take her downstairs and play with her so you can sleep a little longer?” Best brother ever and I happily thanked him and told him what a great big brother he was as I snuggled up to Quinn to sleep for another hour or so.  I don’t know if it’s the fresh air, cold weather, or just the comfort of being at home that knocks me out, but it always seems to do so.  I also spent a lot of time running which felt so nice.  I finally feel like I have my running mojo back and it always seems to come back when I am there.  I have a marathon to run in a couple of weeks so I made myself be pretty disciplined with my fake marathon training.  I was pretty consistent with running my standard 3.5 miles just about every night.  I somehow talked Brianna into running this thing with me.  Must be the older sister influence;) She ran with me at home and we even did 7 miles one night which was surprisingly pretty easy.  Her little 19-year-old body will be just fine.

Back in Arizona is hard for me, I’m not going to lie.  The first night we got home I felt like I was sucker punched as I walked through the door to our house without you bouncing behind me.  I handed Poppy to your daddy as he hadn’t seen her in a few days, told him I was exhausted and asked him to please take care of her so I could go to sleep.  I knew the sleep wouldn’t come as all the voices in my head were screaming so loudly.  I haven’t touched anything to sleep in over a year, but that night I needed to just pass out into oblivion for a solid 6 hours so I did.  Oh, how I sometimes miss the days of complete darkness with my old friend, Ambien when the world just quietly slip away.  I had to give up my love for that shit a long time ago due to loving it a little too much, but I think once a year is an o.k. compromise.  Sometimes I just need a night of blackness.  I had warned your daddy, so he was on Poppy duty and was happy to do so as he had missed her so much.

Speaking of Poppy, Ronan. Uhhhh…. remember when I asked you to make her “extra spicy?”  It is too late to give just a bit of that spice back???  What in the world happened to my sweet, cuddly baby girl who just cooed and started sweetly into my eyes all day long?! Now my days are filled with this very wild, strong-willed girl who reminds me of a little boy I once knew so very much.  She has turned into such a little spit fire who is on the go all the time and is constantly babbling, screaming (in a good way) and is into everything.  To say she keeps me on my toes is an understatement as I am chasing her around all day and she is only crawling. Imagine what she is going to be like once she starts to walk!  You know I am loving every second of it and so are your daddy and brothers.  She is full on obsessed with your daddy, too.  In a way that I really don’t remember any of you boys being.  If we are in a room together with her, she wants your daddy over me.  I secretly love it as it is amazing to see the bond between a father and a daughter.  It’s all so new to us all but so beyond sweet.  Your daddy is in total heaven about it.

Alright little man, this is all the update I can do for tonight.  Back to writing this book I go.  I miss you.  I love you.  I hope you are safe.

xx

Heroes for Hope

tumblr_mqib9oQmfY1s7ebjeo1_500

Another great event in the Pacific Northwest. It was a huge success last year, please help them make it even better this year!

http://heroesforhoperace.org

For those of you who want to sponsor me…

photo

 

 

THANK YOU! I’ve gotten so many emails from people saying they can’t run, but would love to sponsor me. What do I say to that?!?! HECK YES! And thank you times a million! You all are such wonderful, beautiful souls.

I know Ronan is so proud of all we are doing. The link to sponsor me is down below. Nothing can stop me from running for Ro. Not even these E size milk filled boobs.

xoxo

http://www.firstgiving.com/fundraiser/rockandro/runlikearockstar

I know what I want to name her…

tumblr_mfl623n8p31rhwvbro1_500

Ronan. Ireland Ronan Poppy Thompson is what I want to name your sister. I know I told you I’ve been having a hard time getting super attached to this pregnancy and I know the only reason for that is because of the fear that comes along with it. Not because I love her any less than I love you and your brothers. It’s the fear of death that now comes along with this pregnancy. I’ve never had this fear before, until losing you. Now I worry about it all the time. If I don’t feel your sister kick for a while, I’ll think to myself, “Oh my god, she died.” Good thing I didn’t get too attached, right? Wrong. I am not fooling anyone with this whole trying to protect myself thing. I have been attached since I found out at 5 weeks that she was the size of a Poppy seed. I already have a plan for when I am having her, and I will be induced before 40 weeks because I of course have to get her out before she dies of stillbirth, right? I was induced with Liam and Quinn at 36 1/2 weeks. I had you at 37 1/2 weeks. I know Dr. Schwartz is alright with the plans I am scheming up in my head.

Now that I am feeling your sister kick all of the time and I can feel how strong she is, I am starting to come around. It’s taken me a while, but I can finally decide on a name. Your daddy and I have had the name Ireland picked out since before Liam and Quinn were born. I have always loved it. I think it is so strong, unique, and beautiful. I have to have Poppy in there as well. I cannot give that name up for anything. It has come to mean too much to me and just saying it out loud, makes me smile. We will call her, “Poppy,” even though her first name is Ireland. And eventually, when she is old enough to decide, she can take it upon herself to figure out what she wants to be called in life, but to me, she will always be Poppy. That name will forever remind me that something could make me smile, through my darkest hours, even before your sweet little sister, set foot on this earth. That name will forever remind me of the happiness I can feel again, just by saying the name out loud. What I love even more is hearing other people referring to her, as Poppy.

“How is Poppy today?”

“Is Poppy kicking?”

“Who do you think Poppy will look like?”

Everybody is calling her by this name and I love it so very much. It makes me smile and feel a bit of happiness again. I am so very thankful for your little sister already. I know she is going to help us all so very much. She will bring us back some of the sunshine in our lives that we are all missing so very badly.

Today, we hopped in Papa Jim’s truck and headed up to the Mount St. Helens area to go sledding and play in the snow. This state never fails to leave me breathless. I still think it is one of the most beautiful places on the planet. We found a ton of snow and I watched and snapped pictures as your daddy, your brothers, and Papa Jim spent a couple of hours hiking up a hill to fly back down it on their sleds. I listened to their laughs and soaked up their happiness as much as I could. You would have loved today. If you would have been with us, it would have been absolutely perfect in every way. I took it easy due to my ever growing belly. No sledding for me today although I’m sure I would have been fine but better safe than sorry, right? This whole better safe than sorry thing is slowly killing me. How am I supposed to burn off my grief/anger by having to be so freaking safe all of the time? I hate that I cannot go for my long runs/hikes/ or all of those other things I used to do to help me get through this. I cannot wait for this Poppy girl to be born so I can get back to all of my night runs, etc… I am already planning on running the NYC Marathon in November if I can get in. No training required once again;)

Alright little man. I’m sleepy tonight. I sleep really well here and it’s a nice change from the insomnia I usually deal with back at home. I’m going to take advantage of my sleeping well while I can. I miss you. I love you. I hope you are safe. Sweet dreams, baby doll.

xoxo

This slideshow requires JavaScript.

We are home. Without you. I miss you.

Ronan. This trip was exactly what we needed. We are going back to AZ today and I think everyone is a little sad to leave. Your brothers are already planning their fall break and are both begging to come back to see your Nana/Papa/Bri/Derrick/Cindy and Tim. I think it sounds like a great idea. This place makes them happy. It was a great couple of weeks just letting them be boys and enjoy everything the Pacific Northwest has to offer. This place is so serene and peaceful for all of us. I am so thankful to your Nana and Papa for making our time her so special and taking such good care of us. They have always been this way though. Letting us take over their house and invade their entire world for a however long we want, makes them so happy. I know they miss us so much when we are away and the time to them with each other, is always so precious.

We spent the last couple of days just doing simple things. A lot of hide and go seek, baseball, and yesterday we went with some friends on their boat. I remember last year when my whole town came together and built this huge float for you for one of the parades in town during the holidays. They worked so hard on it and I don’t know if I ever even said thank you. I hate that. I hope I did, but if I didn’t I would like to now. A huge thank you to everyone who was involved last year with this massive project. The love from my hometown for you, Ro, has been incredible. I saw the float yesterday, or pieces of it rather. After the parade, the float had to be taken apart but my friend, Jen, could not just throw out of the wood decorated with all things Rockstar all over it. She saved it all and had her lovie and a friend take it out to a place where they fish and camp. They built a fishing shack out of the fort. She took me up to it yesterday to see it while we were on their boat. I was so overwhelmed with emotion and I kept it together pretty well until she gave me a big marker to sign it as everyone does who comes to their special spot. I wrote Maya & Ro with a big heart around our names. I lost it after that and ended up bawling. Jen saw my tears through my very well covered sunglasses eyes. She grabbed me and held on to me for a few minutes. I was flooded with thoughts of I can’t believe my baby is not here and his name is now all over a wall to I can’t believe how lucky I am to have such thoughtful caring people in my life who will never let you be forgotten. As always, it was bittersweet. Most things in this life are without you now. I spent the next couple of hours watching your brothers play, laugh and love. It was a good day as far as good days go now. It was a good day with my dear friend who I got to watch in her new life now. She is finally so happy and that makes my heart happy. She deserves it.

I have about 50 million things that I have been wanting to post/write/say on here, but I just haven’t taken the time. I really needed to take a little break from this cancer world that I still live, eat, and breathe in. I didn’t do much foundation work while I was here. I know how this world works and how easy it is to get burnt out. I can’t burn out as I have too much to do which is why I have to make myself take time outs even though I think I can keep going non-stop. It’s hard for me to take breaks in this world now. I feel like when I do, I’m not taking care of you. I have to have a lot of conversations in my head talking to myself about the importance of a break here and there. I have to constantly tell myself that you would not be mad at me for living and doing normal things that don’t always involve all things cancer related. Doing normal things still feels wrong to me. I have a hard time with normal everyday life, without you. I know I am hard on myself but I think it’s just my nature to be this way. I think I’ve always been this way but since losing you, I know I beat myself a lot more then I used to. I am aware of this. I just don’t know what to do about it.

I don’t even know where to start with what it is, I am about to say. LoRo. I’ll just start with LoRo. Her name is Lauren but the nickname, LoRo was made up for her due to her undying love for you. I’m not sure how or when she found out about you, but at some point we starting talking via email/text messages. She is 18, but not your average 18-year-old. She has been spending most of her teenaged years, in this cancer world, doing and helping other kids. At some point, she heard about you and fell in love with you and our story. She is constantly making me these amazing pictures on Photoshop of you and is always wanting to help with whatever I need. She is the one that made your Ronan’s Day of Love flyer. I’ll ask something of her and 2 minutes later, it is done. The 18-year-old girl who has been making this world a better place with her sweet heart, for a very long time. She has become someone who I love, even though we’ve never actually met. I had heard through her and from a few other people last week that she had to go to the hospital, for not feeling well. I didn’t know until yesterday, how serious it might be. They found a tumor in her stomach. Next week, August 8th, they are going in to remove one of her ovaries and from that point it will be biopsied to determine if it is cancer or not. I am literally sick to my stomach over every single part of this. I talked to her mom yesterday who is basically is complete and utter shock. I talked to LoRo as well who told me in her sweetest voice that she was not worried as she feels like you are watching over her. I told her I knew you were too and which is why I am not panicking. This cannot happen to a girl who has spent much of her life, helping kids with cancer, right? It just cannot. That would be the sickest of the sick, Ronan. I mean none of this world makes sense. No child deceives this. But LoRo? Not acceptable and as of now, I am holding my breath and biting my tongue. It has to be nothing. If all of you lovely little blog readers could just keep our LoRo in your thoughts, prayers, or whatever else you do, I would really appreciate it. Ronan. You know what I am asking of you. Thank you, baby.

I will keep you all updated on LoRo, but if you are on Twitter, and want to follow her, you can do so, here:

https://twitter.com/thelightholder

I started this a few days ago. We are home. I am doing my best. Your daddy worked so hard to make sure everything was perfect for us, to come home to. He even had our bed made (one of my pet peeves is an unmade bed) He is the sweetest. I didn’t even have to say it, he did. “Everything would be perfect, if Ronan were here.” He is right. That will forever be our truth.

I’m going to go now, babydoll. I love you. I miss you. I hope you are safe.

xoxo

I would like to go back to reality… never.

Ronan. I am always nervous when going to places that I have been with you before and having to return to them, once again without you. I was nervous to come here, as I never know how I’ll actually do. I have only the best memories of being here with you as your Nana and Papa’s was one of your favorite places to go. We didn’t come here last summer. I thought it would have been too painful. I think anything last year, was too painful. Coming out here, this summer with your brothers was the right thing to do. They have spent the past few weeks, in utter bliss. I have not seen them so happy, since before you were sick. It has been a little healing to my heart. How could it not be? I want your brothers to be happy. I needed to see them this way, for my own healing as well. I may never be happy again, Ronan. I can be o.k. with that, as long as your brothers are happy. I can live my happiness through them.

This place, will always be home to me. It will always be my favorite place. It is good for my heart, mind, body and soul. It has been a good trip, even under our harsh circumstances. You know what I got while I was here, Ronan? Nothing but pure love. What do you mean, I can walk around and not be judged for what it is I think, feel, say or act? Where are all the people, glaring at me with their hash, cold pretend eyes? Where are all the whispers?They don’t exist here. I get smiles. I get we are proud of you. I get you are doing a good job. I get your name brought up, everywhere. You are not swept under the rug. You are not forgotten because life just goes on. You are not in a better place. You were not part of a bigger plan. This did not happen for a reason. There is no reason for this and everybody here, knows that. Here, it is simple. It’s unconditional love, trust, support and no judgements. The only way a bereaved parent, should be treated. I am thankful to my family for trusting in me that I would find my way, and emerge from my hole, when I was ready. I am sure that hole will always exist for me, Ronan. But not once have I wanted to crawl in it here. I have spent the past few weeks soaking up your Nana, Papa, your brothers and Bri Bri. It has been just the time that I needed to unplug from the world and just be. Everyone misses you so much, but nobody is afraid to talk about you. Everyone is so worried about me, but nobody is afraid to talk about that, either.

I saw my dad today. I took your brothers over to see him for a bit. It was a quick visit. I don’t talk to him much, because I honestly don’t talk to very many people much anymore. He told me I looked better than he expected. He told me how worried he is about me. He looked so sad. I told him I would be alright. I talked to him about Dr. Jo for a while and how she has really been the one to help me through this. I told him about our very nontraditional therapy like relationship. About how I spend a lot of time up in Sedona with her and we do things like barefoot hike instead of sitting in some stuffy office, talking about stuffy things that most fancy doctors with their PH.D’s talk about. About how her therapy isn’t just an office where you are talked about, then forgotten. How I go there and how you are so loved by her because her heart is that big. I watched my dad, watching me as I talked about Dr. Jo. He looked down at me and said, “I am so glad you found her. She sounds amazing and now I am so less worried about you. Please give her a hug for me and tell her thank you, for saving my daughter.” I just smiled at him and said I would. See, Ronan. That right there is what I am talking about. How it does not matter how I am finding my way, because the people that truly care about me most and truly love me for me, don’t care how it’s done. They are just so thankful for the help and that I am finding my way, the way I need to find it. Because they are intelligent and open-minded enough to know that the only way I am going to find my way, is my way. Not anybody else’s.

Today, was your Nana’s birthday. I was sad most of the day because any type of birthday is sad for me now. They all feel empty without you. And I know what we all were wishing for and that was for you to be back here, with us. I did my best. I played with your brothers most of the day. I watched them follow your Papa around like two little ducks. I wanted my 3rd little duck to be following behind him, too. I looked for you, everywhere. I wondered if you were watching us. I wonder that a lot. It doesn’t give me peace, it just makes me sad because I know how badly you want to be with us. It is so wrong that we are separated. I have such a hard time in life without you here with me and some days, I just don’t know what to do. It’s days like today, that I force myself to continue moving forward, even though everything hurts so bad. I haven’t really had any breakdowns since being here. I know I am due for one, soon. I’m positively sure it’s waiting for me back in Arizona. We have one more day left here. Leaving is going to be hard. Your brothers are not ready to go at all. I am dreading having to take them away from your Papa and Nana. I think it’s going to be hard on everybody. Reality awaits us and there is no escaping that. It was nice to take a little break from it here though, and I am so thankful for the time with your Nana and Papa. Watching your brothers with them is one of my favorite things in life. It always has been. The bond that your brothers have with your Papa Jim is so very special. You loved him so much, too. I’m sorry, Ronan. For the fucking bullshit of a hand we were all dealt in this life. It rips me to pieces, every single day.

It’s late. I need to try to get some sleep. I miss you. I love you. I hope you are safe. Sweet dreams, baby doll.

xoxo

The most beautiful girl that there ever was

Ronan. I get a lot of letters from people. They are for the most part, filled with the kindest, most inspiring words that one could ever read. I occasionally get some hate mail, telling me how my evil plot to help other kids with cancer, is destroying the world due to my swearing, too many opinions that I should keep to myself, and of course all of my anger. Because as you know, I have been told over and over again… that you are exactly where you should be and in a much better place so I need to find some peace in that. You know what I say to that and what I will always say to that. Complete and utter bullshit and nobody should ever say those words to bereaved parent. EVER. I don’t care what it is they believe in. Those words are so ignorant and cold. They are so hurtful on so many levels. No parent should ever be without their child in this world. And if they have to be, those words should never be said because they just are not true. The only place a child belongs in this world, is with their parents and nowhere else. End of story on that.

I got a letter in the mail a couple of months ago. During that May month that was so hard to get through. I recognized the address and closed my eyes before I ripped it open. I sat with this letter and let my world absorb around me a bit before reading what it said. I slowly read the eloquent words before me and let them sink in, in a way that only one bereaved mother can do to another. I read the letter, over and over, and cried. I think I sat on the floor for a while. Your daddy came home. He saw me holding the card and asked who it was from. I just looked at him and said, “Simi’s mom.” His eyes fell to the floor. “What did she say?” I held on to the card and just mumbled something like, “Everything. Just everything.” I didn’t give him the card to read. I tucked it away in a book that I carry with me everywhere. I only keep really special things in this book that I carry around with me. It has a couple of pictures of you in it and now, this card too. I have read this card, over and over, especially on the days that I am having an extra hard day. The words fill me with such sadness and strength, all at the same time and they also remind me that no matter what happens in this life, you have to find a way to go on no matter how much things hurt.

I’ll never forget the day that I got the phone call about Simi. It was from a friend of mine, whom I don’t talk to very much so I remember thinking it was so strange she was calling. She started with the small talk. Your brothers were so little, I was pregnant with you. I was at home, just doing everyday mommy things. “Maya, Simi died.” said the voice on the end of the phone. “What do you mean? When? I don’t understand!” I could no longer understand what was being said. I set the phone down. I was trying my best to wrap my head about the news I was given but it seemed absolutely ridiculous to me. Not possible. Not this girl. They must have Simi mistaken for someone else. Not this girl, who was had such a presence and more beauty, personality, and fire then I had ever seen in another human being on this planet. It couldn’t be her. She could not just be gone. I called my mom, crying. “Mom. Tell me it’s not true!” My mom too, had to heard the news. “I’m sorry. I just heard today.” Fuck! I hung up. I spent the rest of the day, taking care of your brothers and thinking about Simi, of course. But it was her parents that I could not get out of my head. I had never in my life witnessed two parents that loved their child, more than the two of them and vise versa. She was their whole world. They were her whole world. How will they survive this? How will they go on? What will they do, without their daughter? The thought of this was so unfathomable to me, that I was left thinking that they just wouldn’t. That nobody survives something like this.

I went back to Washington for the funeral. I sat through it and I remember it all felt like a dream to me. I remember being so aware of having you in my tummy as I think I was about 5 or 6 months pregnant with you. I remember thinking, “How is this possible. How can I be sitting here with this life inside of me and my friend, is in a casket in front of me?” I left after the funeral was over, still not being able to wrap my head around any of it. I left Simi’s funeral and went back to my life in Arizona thinking about a reality that was so awful, but of course it would never be mine, right? How naive I was. I went back with a heavy heart and it was so obvious to me that the entire universe had changed without Simi here anymore to fill it with a sparkle that only existed in the world, due to her. The first holiday, without her I remember being really sad. It was New Years Eve and all I could do was sit at a table and cry. There was no celebrating and your daddy was respectful of that. It was a somber holiday to say the least. I clearly remember thinking though, “I feel sad? Think about how her parent’s feel. My sadness is only a sliver of what they are feeling.” Once again, it was so unfathomable to me, that I could not even imagine their pain. The New Year’s holiday after Simi being gone was never anything we really ever celebrated again. It just seemed stupid to me as she passed away on January 1st and her parents always weighed heavy on my mind.

I took the loss of Simi and continued on with our life, being extra grateful that I had your daddy and 3 healthy boys. I swear she has always been a big part of the reason that I wear my lipgloss brighter (even before you died) listened to my music louder, ran further, and loved harder than I ever had in my life, due to just knowing her. She made everyone around her feel like they could rule the world because, well.. why not? Limits didn’t exist and her free spirit soul was infectious to be around. She was unlike anyone on this earth. Then you got sick, Ro baby. And then you died. And since you have died, I seem to think about Simi a lot more than I used to. I think about what she would be doing if she were still her. I picture her face all the time. Her gorgeous smile and the most insanely beautiful red hair that there ever was. I wonder if the two of you, are together and if you are, I know you are having the time of your life. The two of you are probably giving everyone a run for their money, with your beauty and spitfire souls combined. It’s obvious you are doing the best you can, to give us the strength to go on in this life down here. I am trying to hard to continue to just breathe some days.

I sent Simi’s mom a text last week asking if she was in town and if she wanted to get coffee. She said she was and we made a plan to meet up. I went to her house today. As soon as she opened the door, my eyes were full of tears. “You look so much like Simi. Your eyes. So beautiful.” We hugged tightly the way only bereaved parents can do to one another. Hugs that are filled with so much pain, that you can psychically feel it when embracing. We sat and talked for hours. Time quickly slipped away after catching up, crying, drying eyes, memories and a little laughter, but not much today. It was a hard day, but there was comfort there too. The mother that I thought, would never survive the loss her daughter, because NOBODY survives that, right? She has survived it and has the scars and battle wounds to prove it. But you know what else she has, Ronan? That same sparkle in her eyes that reminds me so much of you. The sparkle in her eyes, that are filled with so much pain, is still there. The sparkle that only the most special people seem to have in this world. You know what a sucker I am for those sparkly eyed people in this world. They are a rare and special breed. Simi had it, too. I’ll never forget her sparkle for as long as I live.

You know what else, Ronan? The mama that I thought, would never survive losing you, has survived too. I won’t ever be better from this. I won’t ever be o.k. from this. I won’t ever get over this. All I can say is up to this point is, I have survived this. I am a fighter and a survivor and I will always be your mama. Forever and always. Just me and you, right baby? I’ll never forget how we used to say that to each other. I miss your squeaky little voice so much.

I’m going to end this here tonight. I’m not going to lie, I had a really hard time writing this. I struggled with the words a lot. I think it is because there are no words good enough to describe the beauty that Simi possessed. And there are no words awful enough to describe how empty this world is without her. I wish that these words  never had to be written because she should still be here and so should you. It should not be this way. Life is short, precious and a lot less beautiful without the two of you in it. I’ll never in my life understand any of this.

I miss you, I love you and I am so very sorry. I hope you are safe. Give Simi a smooch from me. I love you both.

xoxo

Nature is my church and you are my teacher


Ronan. Hi babydoll. We are still at your Nana’s house. It feels like we’ve been here, forever. I don’t miss home. I do miss your daddy. He can’t come out this trip, which is killing us both, but we are both doing our best. All that time he took off during May/June has left him with a ton to catch up on. I hate knowing that he is at home at night, in our empty house with just your urn, to keep him company. It is so wrong, on so many levels. I’m doing my best to play the role of both parents here. Your Papa Jim and Nana have been a big help. Your brothers have been really good. We have been doing so much…kind of going non-stop. Last night, your Papa Jim wanted to take your brothers out on his boat, night fishing. “What do you mean, they’ll be gone until midnight? No way! I already have one dead child, I don’t need anymore!” I said to your Nana with a look of terror on my face. “They aren’t going.” But then your brothers, begged. And begged some more. Normally, I would not give into the begging. I thought it through. Night fishing with Papa Jim. Who knows when this will happen again. New memories for them. An adventure. Something they will treasure for the rest of their lives. “You can go if you both promise me this. No fighting on the boat. I want text message updates every hour. Under NO circumstance does your life jacket come off. EVER. You follow the rules and listen to everything your Papa says. Pinky promise me.” We hooked pinkies. “Thanks, mom!” They were so excited. I got text messages, every hour on the hour. The cutest little text messages. Your brothers are so sweet, it kills me that they have to go through any of this. I am trying my best for them, Ronan. And for you. I think I am doing an alright job. I feel like I am doing much better for them, then I was doing last year at this time. Everyday is still as struggle, but it is easier for me to be more present and engaged with them, then it used to be. I decided awhile ago that for as much pain as I am in, I cannot ruin their lives, even more by bailing out. They don’t deserve that. They don’t deserve any of this, but what happened to you was not in my control. What happens to them, due the the way I react to the loss of you, is in my control due to the decisions I make. I am trying to be a good mom to them still, Ronan. I am trying so very hard. I think somedays, I get it right. I hope they will forgive me for the days that I just can’t seem to pull my shit together. They don’t happen very often. But I hate that they have had to see them at all. 

Your brothers and Papa got home around midnight. They caught a huge Salmon. I am so glad they did. That made their adventure, even better. We all 3 slept in again and I woke up to hearing the giggles and laughs coming from outside. I went out to see what was going on. Ahhhhh… the cleaning of the salmon had begun. Liam was gagging and would not get near it. Quinn was gloved like a freaking serial killer and was cutting away with a huge knife, helping your Papa, clean the thing. I got there just in time to snap away so great pictures. It was a beauty of a fish. Quinn then proceeded to take the head of the fish and inform me that he was a doctor, performing surgery. I watched him as he cut away and dissected the entire head of the fish down to the eyeballs. This might make some mom’s squeamish. Not your mama. I was right in there with him, helping him with all the guts and blood. Sometimes he is so much like me, that it is eerie. I’ve never been one to be squeamish over guts and blood. But it does take me back to you, of course. All of the bloody noses that we had to deal with. I will never forget those, Ronan. They haunt me at all times of the day. I’m so sorry baby. For all you went through and even after everything, nothing could save you. How could that even be? I’ll never ever understand, Ronan. I would have done anything to save you. I would have taken you anywhere. I look back and regret so much. Even though your daddy still swears we did all we could do. That will never be good enough for me.

After the cleaning/operation on Mr. Fish, we went to Oregon to hike Multnomah Falls. These two states, often leave me breathless Ronan. There is never ending beauty, everywhere. I miss it here, so very much. I have for a really long time. We had the best day with your Papa. It was day full of simple surprises. The deer that we saw on our hike, that was just sitting there, eating the leaves not even 3 feet from us. I saw it and immediately thought of you. “Oh, a gift from Ronan.” I think every beautiful thing I see, feel, or hear in my life is a gift from you. It was so perfect, calm and sweet. The deer wasn’t scared of us, it just nibbled on it’s food, while staring into my eyes. It jumped away after somebody came by with a dog. I could have sat and started at it, forever. It was almost the most perfect day. But you should have been there, too. I kept looking for you everywhere and imagining what you would have been doing. I do that with everything we do, without you. I know you would have been right in there with Quinny, dissecting the fish. I know you would have been right there with Liam, throwing rocks into the waterfall. I know you would have made me carry you, halfway up our hike. I know you would have been eating that ice cream cone, with your Papa and giggling with him in the car. I know these things, even without you here to do them. I live my life imagining you this way every second of every day. Nothing I do in my life, is without you.

I’m going to end this here tonight now, Ronan. I am a blubbering mess and I am trying not to cry too much because I don’t want to wake up your brothers and make them sad. They are both sleeping right next to me. We miss you. We wish you were here. I love you, little man. I miss you so very much. I hope you are safe. Sweet dreams, baby doll.

xoxo

This slideshow requires JavaScript.

What makes a person just up and crack? Because I think if anyone is entitled to, it’s me.

 

 

Ronan. I woke up this morning to the awful news of the shooting that happened in Colorado, during the new Batman movie. WTF is going on in the world? My heart is heavy for all those people who lost their loved ones due to some senseless act of… I don’t even know what to call it. Senseless act of nonsense I guess. Or senseless act of fuckwad fuckery might be even better. What in the world must be going through someone’s mind, to do such a thing? Do they have a dead child? Are they so angry/hurt/sad/defeated/lost/broken and so full of extreme pain all day everyday that they finally just crack one day? Well I am. And to do such a thing would never even cross my freaking mind. I don’t think there is any reasoning behind this madness. A mental illness perhaps? I don’t see any other answer, but I guess we will just wait and see. All I know is that kid, made a fucking choice to hurt so many innocent people. And all for what? All for nothing. Why can’t people like this, get cancer and die before they have the time to plot and scheme to do such a thing. Why didn’t that kid get cancer and die instead of you? Yeah, I said it. Fucking asshole. I am glad he didn’t die. Do you know what I wish? Instead of letting him get off by putting him in some prison somewhere, let’s put him in his own private cell and hook him up to chemo treatments for the next 50 years of his life. Let’s put him through chemo, radiation, a stem cell transplant or two, over and over again. That would be the ultimate punishment, without a doubt.

Your brothers were dying to see the new Batman movie today. They knew what happened at the theatre, before I did. We had a long talk about it. I felt weird taking them to the movie… but I did. I still feel weird about it. How could I possibly sit in a theatre, to watch a movie when all these people’s lives have been shattered? It seemed morally wrong. I did it anyway. I don’t feel good about my choice… but it was one I made today, for the sake of your brothers and honestly, I wanted to get lost in the world of something else for a couple of hours. Movies aren’t easy for me to watch but today, I forced myself to sit through this one. I could not stop thinking about all the parent’s who will now know what it like to have a dead child. Something a parent should never have to know. I’m so sorry to all of them. I had a breakdown in the shower today, for all of them. I had a breakdown, much of the day. There were a lot of tears shed today. Sometimes I truly do think you were too beautiful for this ugly world. It is ugly, Ronan. Things like this unnecessary tragedy, proves it. There is not explaining or justifying this. It is unjustifiable, just like all these kids getting cancer and dying from it. Just like your death. No reason or answer for such things, will ever be good enough.

Today, I hung out with your Nana. I stayed at her cafe for a bit while she closed it up. I talked to the group of men that come in for their coffee, right before she closes. So sweet. They all know all about you. Everyone does. They all told me how proud you would be of me. One of them told me, he was worried about me, until he saw me in person. Because after seeing me, he knows that I am going to be alright. I wasn’t sure how to take that, but it made me smile. I told him thank you. That I was trying my best which was all I could do. A girl came into get some of your bracelets. You know how much I love meeting your little lovies. I went over to her and introduced myself. She was so sweet. We talked for a while. She was having a hard time, holding back her tears. It didn’t take long before we were both crying and I embraced this stranger, for a hug. I am always thankful how it seems that you are inspiring a whole world of people, who never even knew you. It truly does warm my heart.

Do you know that I miss you every second of every single day? That it makes me so sad during the times that I am teaching your brother really important things about life, that you are not here to take part in this too? Here are my examples for the day, Ronan. The 3 of us were driving in the car today. A super important life lesson was learned. We had the radio on, of course. That Quinn of your is so obsessed with music that it makes me smile. A Tom Petty song came on that he hadn’t heard before. I squealed with excitement. But he went to change the station. I quickly said, “Nooooo! You cannot change the station. It’s a Tom Petty song! Rule number one in the car, boys… NEVER CHANGE THE STATION WHEN A TOM PETTY SONG IS ON!” They both laughed. Stevie Nicks came on next so they were also schooled in the amazingness of her as well. Very important life lessons indeed. Here is my other funny story. I was playing the game Life with the two of them the other day. It came to my turn and I had to stop to get married. I looked at your brothers and said, “I’d like a wife, please.” They both giggled and Liam handed me a pink lady, to ride in my car with me. We continued to play and at one point, Liam knocked my car over and my little peeps fell out. Quinn goes, “Move, Liam! I’m trying to put mom’s wife back in the car!” I thought this was so cute, so funny, and so very sweet. I felt proud of your brothers who are being raised to learn that love comes in all forms and it does not matter your race, sexuality, or what anyone else thinks. It was a proud mama moment, to say the least. I am sorry you are not here to learn these things, too. Somedays, this still doesn’t feel real to me. A lot of days, I pretend that you are still here with us. It helps me to get though the days that still seem to drag on.

That was yesterday, Ro baby. Today was much of the same. We all slept in and played outside. Your brothers really wanted to go to Derrick’s baseball game tonight. The thought of this gave me major anxiety. A packed baseball game… lots of people…I don’t do well in crowds. I gave myself a big pep talk. “Come on, Maya. It means so much to Liam and Quinn. You can do this, for them.” I really did want to see Derrick play too. You would be so proud of him. He’s grown up so much that it kills me! I remember when that boy was your brothers age. Your brothers have always idolized him. You loved him, too. I’m sad you didn’t get to see his amazing catch that has been all over ESPN. He should have won that ESPY award; he was totally robbed. He had another great catch tonight that made me smile. Your brothers had the best time and I did alright myself. I sat in my little space surrounded by your brothers, Papa Jim, your Auntie Cindy, Uncle Tim and Derrick’s darling girlfriend. I missed you so much. You would have loved the game. You were always so crazy about baseball.

I might end this here, now. I’m sad. I’m tired. I miss your daddy. I miss you even more though. I always will. I will always miss you, more than anybody else in this whole big wide world. G’nite Ro baby. I love you. I hope you are safe. Sweet dreams.

xoxo

Cancer is a whore. My friend, Robyn, told me so.

 

Ronan. I am tired. Living this life without you is exhausting. I hardly remember the days when I used to think you wore me out due to your never-ending energy. I used to think taking care of you was a lot of work. Well, let me assure you, taking care of a dead child is 100 times more exhausting. It is 100 times more exhausting than the temper tantrums, throwing up, crying, teaching, arguing, potty training, bathing, feeding, reading, singing, playing, snotty noses, laughing, loving, and all the other beautiful things that come with raising a child. Taking care of a dead child is 24 hours of pure and non-stop torture that on days like today, leaves me feeling more exhausted than running a fucking marathon.

We are still in Washington. I do well here. It’s no secret. My heart is not in AZ. I won’t live there forever. There will come a day when I will leave. Your daddy knows this. He is on board with this. He will go wherever we decide to go, as a family. I’ve already thrown out a few places as options. It’s a decision we have both made. My heart does not belong in that state. It never has. I have only a couple of things keeping me there, as of now. But those couple of things mean too much to me to leave. As long as they are there, I will stay there. I’m not saying what or who they are, but I know you know. Because you’ve always known. Right now, we are there because it is where we need to be. Because right now it is what is best for Liam and Quinn. I can put myself aside for the sake of the two of them for the time being. I can sacrifice myself for those boys’ no questions asked. But Phoenix leaves me feeling restless and chaotic. The only peace I get is when I am hiking up a mountain in 110 degree weather. That tells me right there, that there is a problem. I know what my main problem is… that being not having you anymore. But Phoenix only seems to add fuel to the fire. I can make due for now. I can be thankful that we have your Nana’s house to come to so that I can have a little peace and quiet. I can be thankful for things like rainy summer days, scratches from sticker bushes, muddy feet from exploring the never-ending rivers/streams/ponds that surround us… I can be thankful that your brothers have this place to come to, to experience childhood the way it should be. Simple, calm, and beautiful. You don’t get much more beautiful than this state. I have always thought so. It makes the 8 months of rain, totally worth it. But I am also a big fan of the rain so I may be biased. I am an even bigger fan now because I feel like my body and soul are in a constant state of rain due to all of my tears. It’s nice to not wake up to the blinding freaking sun every single day. The mornings here are damp and foggy. The air is clean. The sun comes out just in time to kiss my lips for a few hours and then it goes back to sleep. My heaven.

I’ve been doing a lot of playing with your brothers. So much playing that we are all 3 falling into bed and we hardly have the energy to say goodnight to one another and you, before it’s lights out. That never happens in AZ. It’s been a constant stream of baseball, board games, swinging, basketball, and Papa time. That Papa time is my favorite time of all. Your papa and I took Liam and Quinn to Mount St. Helen’s yesterday. The world that I watch Liam and Quinn slip into around him is magical. It’s one of my favorite places to be. The laugher and adventures are endless. He is the youngest 72-year-old that I have ever known. It’s like I’m watching 3 kids play whenever I am with him. He was one of your best friends and vise versa. He misses you so much. Yesterday, when we stopped to explore a little bit, we were throwing some rocks into the water. There were a ton of sticks and wood pieces floating around. The kind that you used to make your papa load the back of his truck up with. “More papa, more!” you used to yell to him. We would always bring home 10-20 pieces of wood and sticks for you. Your papa found a really good one yesterday and said, “I’d better get this one, for Ronie.” “Ronie, Ronie, Macaroni!” he would often sing to you. I just looked at him and said thank you. What I really meant was thank you for being the best step-dad ever. For being the best papa ever. For being the best friend to my 3 boys. For never forgetting you, Ronie, and for never being afraid to talk about you, sometimes like you are still here. I know how hard this has been for him. He loves you so much. He would have traded places with you, in a heartbeat. I know he is constantly asking himself why you and not him. We all are baby boy; we all are.

I think about you all the time. I told your Sparkly that I swore I think about you, 24 hours a day. He said he knew. I know he knows this because he thinks of you everyday too. He misses you. I have been thinking about a lot of things lately, trying to give myself some peace of mind which won’t ever happen, but I need just a sliver of it, to get me through this. For me to say that I 100% know where you are, who you are with, and what you are doing is something I am not willing to eat up on a plate of bullshit. Hello! Am I the only crazy one out there, who will admit this?!! NOBODY REALLY KNOWS where you are, Ro baby. WTF! I can fully respect what people believe… but I am so tired of hearing, “Oh, hello… I am 100% sure of where Ronan is. He is safe and happy and he is where he should be. ” Fuck off people. That is not the right way to approach me. Why don’t you just be honest and say, “Oh, hello… I don’t 100% know where Ronan is, but this is what I believe.” Thank you. I can deal with the “I believe part.” I don’t have a problem with the “I believe part.” I won’t even tell you to fuck off. I will politely smile and tell you thank you, instead. I just want some freaking honesty. Is that too much to ask? I don’t think so. Unless you are officially hanging out in heaven, with Ronan, dancing on clouds and then you get to come back here and tell me about it, and put it on a DVD for me to watch…. I am not going to 100% be sure of anything. That’s honest. That’s real. It fucking sucks but I am not willing to sugar coat the life and death of my child just because it makes other people comfortable.

I know what I think I believe. I know what I think I don’t believe. I know that I am still learning and growing, but no matter how angry I get, I still have a shred of faith that I hold on to. It’s dear to me no matter how different or how out of the norm it is. I don’t like normal. I grew up with a dad who used to mediate on top of compost piles. Is that weird? Maybe to some. It wasn’t weird to me. It was his way of teaching me to love nature and the world around us, but mostly to connect to ourselves, our hearts and our spirituality. I know that my beliefs are ever-changing and ever-growing. What I believe today, may not be the same, tomorrow. I find that fascinating and it makes me proud that I have the strength to question everything out there when I could easily just believe in it all, instead. If I want to question if the sky is blue and the grass is green, that is my business. Nobody has the right to try to take that away from me. Not even God himself.

I found a picture of you today, Ronie. I don’t know if I’ve ever called you, Ronie, on here, P.S. Which is weird… because I used to call you that all of the time. Anyway, it was your preschool picture. The one where I can vividly recall the day so well which is unusual for me due to not having much of a memory anymore. You are so beautiful. I put you in one of your favorite orange shirts. Your hair almost matched it in the picture as the color of your hair was so unusual. A copper color almost. Blonder in the summer, but copper was the true color of that mop of hair of yours. I stared at that picture for a long time, before tears sprang to my eyes. I sent a couple of text messages to Dr. JoRo and to my new friend, Robyn. I haven’t really talked about Robyn yet because it just hasn’t been the right time. It’s only been within the last few weeks that we have started to get to know each other. Even though we have more in common than I would like. We both have dead babies thanks to that fuckwad, Neuroblastoma. We met at the NB conference in Austin, Texas. We went out afterwords as a group and I quietly sat back and watched this girl who continued to crack up the entire table with her witty comebacks, smart mouth and silent gun shooting laughter (because she says no sound comes out when she laughs so she shoots guns with her hands instead) Ummmm… who is this girl and can I please be her friend? I got to know her story a bit. I later learned that she not only has one dead child, but two as she had twins after her son, Ezra, and one of them, Price, died due to complications from a very early delivery. It took me a while to wrap my head around this. Wait, two dead babies? Her? Not possible. Not this drop dead gorgeous, funny, young thing sitting right in front of me. Not this gorgeous creature who looks like she is about 19, but has the pain in her eyes of someone who is 3 times her age. But she looks happy. And she can laugh and be carefree and funny! All of the voices in my head were saying, “Whoa. What’s wrong with you? This girl is alright. This girl can function in the normal world. And she has 2 dead babies! Why can’t you?” I left Texas being totally intrigued by this Little Miss Robyn thing. Our friendship has now developed over a series of Instagram/Twitter/Facebook/Texting love. I told her that it had to be the two of you, you and Ezra, who are the one’s making our friendship blossom. Because you know we can help each other, through this. I truly think this is the case. Now that I’ve gotten to know Robyn a little better, I can see that she still hurts so badly from losing her babies. That I know she thinks about them as much as I do you. That will never change. Things will never be alright or better. They are just different. And somedays, different can be o.k. and you can still smile and laugh, but the pain never fades away. As she puts it, it moves from your skin to your bones. It never goes away. I sent Robyn that text below tonight. She called cancer, a whore! I told you we were meant to be friends!

I think we are going to make a good team, me, you, your daddy, Robyn, Ezra and her husband, Kyle. I kind of think that Neuroblastoma, doesn’t really stand a chance. I am sorry that any of us have to know this life. I wish it wasn’t this way. Robyn says to tell you, “Hey,” though. Thank both you and Ezra, for helping us find each other. Please be sure to get into some trouble together. I’ll bet you are the best of friends.

I’m ending this novel here tonight, Ro baby. Much to say still but my eyes are red, blurry and sleepy. I miss you. I love you. I hope you are safe. I am always so sorry. Sweet dreams, baby boy. And of course it is now pouring down rain with a side of extra angry, thunder and lightening. Thank you. I hate being apart from you, just as much as you do.

xoxo

This slideshow requires JavaScript.