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

 

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

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

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

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

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

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

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

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

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

xoxo

Romama’s Busy Day

Ronan. I don’t have time to dig my hole this week, because due to a last minute invite…. I am so busy. And so tired. But in a very good way. I got an email from a lovie from T-Gen a few days ago. She wanted to tell me that Dr. Giselle Sholler was coming into town for a conference. She attached the info. I looked up the conference info and it said registration was closed. I emailed this lovie back and said, “Please, if there is anything you can do…. I’d love to attend this conference!” About an hour later I got an email back saying that I could indeed attend the conference and T-Gen would happily take care of my registration fees. So nice, Ro. I told your lovie, thank you so much! She replied back with, “Anything for Ro.” Thanks so much, T. You have no idea how much this means to me.

The conference is Monday-Wednesday and it’s all on Pediatric Cancer Genomics. Otherwise known as a foreign language to me, but I think I’m starting to understand parts of it. Just when you think you are starting to understand pieces of this childhood cancer thing….. you find out that you really have not a clue. I did not get home until 7 tonight and getting someone to help with your brothers was so last-minute as well. Thanks Sarah, so much. You saved me. I sat in a room full of so many amazing people. I felt honored to be among them. I saw your Dr. Eshun there. He is such a kind soul. He look surprised to see me. I gave him a smile and he tried to just shake my hand like he always does as he is so polite. I grabbed him for a big bear hug instead, like I always do. He asked how we were and wanted to know what I was doing at the conference. I just smiled and told him that if I was going to be an advocate for you, that I felt it was necessary to educate myself on what it is that I am advocating for; besides the obvious. I told him how I have been quietly watching Dr. Sholler from afar for a while and how I was interested in T-Gen as well. He said to me, “You probably know more about this stuff, then I do.” I just laughed and said I doubted it, but I was a fast learner. I told him I’d see him tomorrow. He smiled and said to have a good night.

Tomorrow the conference starts at 8 a.m. but I won’t get there until after I drop your brothers off at school. It goes on until 6:30 or so. It’s a long day but it’s a good long day to have. I love to learn and it comes easier to me when it is something I am very passionate about. You would be the passion behind this, of course baby doll. I was sitting in between 2 men all day. The one to the right kept falling asleep and snoring. I almost elbowed him and said, “Seriously dude?! My son died from cancer, can’t you at least act like your interested in being here?” I kept trying to read his name tag to see where he was from. It said his name and that he was from COG. I tried to give him the befit of the doubt, like maybe he had bad jet lag or was sick. If that were the case he should have just went back up to his hotel room because he slept though pretty much everything. The guy on the other side of the guy I was sitting next to looked nice. I caught a glimpse of his name tag. He was there for the Team Finn Foundation. I grabbed my phone and googled him right away. I don’t waste any time. I read about his son, Finn who died from¬†Rhabdomyosarcoma. I grabbed Finn’s dad on the arm and held it there. I said, “I Googled you. I’m sorry about Finn.” His eyes started to tear up. “I lost my son, Ronan, almost 9 months ago to Neuroblastoma.” I don’t remember what we said next. I think Finn’s dad asked me, why I was here, besides Ronan. I said that was the only reason I needed to be here, was for Ronan. He is my teacher now and he knows I need to learn everything I can on this so we can hopefully help them if we believe in what it is they are doing. If I am going to support T-Gen, I need to do my homework. This is not a test I can flunk. This is not a test you can do over. I am here to learn what they are going to do with pediatric oncology that it¬†will impact this disease in a big way. I am here to meet Dr. Sholler, so I can at least tell her thank you for being so kind to us as she was going to take Ronan on one of her trials in San Diego, but then your little liver starting failing baby…. and there was nothing else we could do. We were trying to get a plane to take us out there and everything. But you were dying even though we still had hope. So much hope. You organs, just started shutting down, one by one. I’ll never get the mental image of your skinny little body out of my head. It will haunt me for the rest of my life. I think about so much, all the horrible treatments you were put through. So much chemo, pokies, oral meds, sedations, surgeries, radiation….. none of it worked because if it did, you would not be dead. Your daddy asked me the other day, what I thought would have happened, had we done nothing? I can’t answer that question yet. Did the chemo kill you faster than just letting you be???

I remembering after you died that I was in such shock. I was sitting with your Mr. Sparkly Eyes and I just said to him, “How did he die? I mean, what happened?” I don’t ¬†medically understand how he could just die.” Sparkly sat and explained it to me in a way that I could understand. Basically all of your organs started failing, then stopped working. Your heart just stopped beating. I thought why couldn’t we just get him new organs and a new heart? Somebody had to have those just lying around, right? How could his heart just stopped beating? That’s impossible! He loves me too much! I still think this way. Sometimes my heart feels so full of love like it did tonight when I met Finn’s Dad, that I swear it doubles in size. I think your heart lives inside of me, Ronan. I think that’s why when I feel really strongly about something or someone, the love I have for them gets twice as big. That’s all because of you. Our love is so strong. It is so amazing. It is going to change the world. I may have broken my promise to you about saving you…. but I’m not breaking this one, Ro. Our LOVE WILL CHANGE THE WORLD. Just watch baby. Just watch.

I’m going now. My brain will not shut up on genocodes/genomics/phenotypes/functional genomes/translational genomics//////// intense stuff///////// worth the raging headache and red eyes. Ready for tomorrow. Not really. But I need to get some sleep for tomorrow. I’ve been sleeping in your bed. It makes me feel close to you.

I love you my spicy monkey boy. I miss you so much. I hope you are safe. Sweet dreams, baby doll. G’nite.

A Birthday, Smiles, and Sparkles

Ronan. I smiled today. A couple of things made me smile and it felt o.k. I started this morning by running with Samya. I’m having a hard time, finding my love for this running thing again. I am still trying to get over that mental block that I seem to be having. I asked Samya if we could not run on the Canal this morning. She sweetly agreed to trust me and I picked out a different route for us. We ran up some hills, through some neighborhoods, and past Camelback Mountain. It was much better than the dirty, dusty, canal. After our run I came home and did the usual routine. The house was so quiet as everyone was still asleep. I hopped in the shower and went through the list of things I needed to get done today. After the shower, I was thankful for the quietness, as I had something important to do. It is Fernanda’s birthday today. I bought her the same locket necklace that Macy got for me in San Diego. I’ve had it for a while and knew what I was going to do with it. I got out the glue and spread a think layer on the inside of the locket. I took your ashes into the dining room and sat you on the table. I opened up your Urn, dipped my hand into you, kissed you and told you to please take care of Fernanda, for the rest of her life. I cried and smiled at the same time, knowing that you wouldn’t let me down. I let the locket dry, wrote her a little card and sealed it with a kiss. I felt as though you were watching me today, helping me with this decision as I know it might seem strange. But it felt right. And I have been thinking about this for a long time. She was with you, right before you passed away. I knew this would be the most beautiful, special gift to her. And it was just as special to me; to be able to give her such a thing. You know I would give her the moon and the stars above if I could. The gift of you is better than anything in this world. I couldn’t think of a more perfect way today, to let my friend know how much she means to me.

I dropped L and Q off at school with the usual goodbyes, I love you’s, see you at 3:15, please try your hardest today. They make me proud everyday. I watched them in the rear view mirror, as they walked into school. I looked back at your empty seat in the car, expecting to hear you yell goodbye to them. It kills me everyday to look back there and not see your sweet little face. I drove to Taylor’s where I told Fernanda I would meet her for breakfast. I sat and ordered a coffee and talked to the waitress about her amazing Amber colored eyes. This darling girl waits on me a lot when I’m there. Her eyes, are stunning and I always tell her so. You know what a sucker I am for pretty eyes. Fernanda soon arrived and I gave her a Happy Birthday hug. We sat and caught up before we ordered our food. I told her to close her eyes as I stood up to give her our birthday gift. I took out the purple jar of glitter that I had in my purse and started sprinkling it all over her head and told her it was from you. She was laughing, and crying, and was covered in all things Purple and Sparkly. I laughed while doing this today as I thought of you and knew how much you would have loved to be a part of something like this. I then gave her the locket of you. I cannot remember what Fernanda said, but there were a lot of tears involved and a lot of words flying out of her mouth. I get easily distracted by her beautiful Spanish accent and her words just kind of flew over my head. I know she told me that it was the most special gift she has ever received, how much it meant to her and some other things. I heard her words, but most of all, I just felt. I felt something else than pain. It may have been a feeling of happiness. Just a tiny bit. The tiny bit of happiness that I now cling to like I am holding on to for dear life. Because I am. I am holding on for dear life, that happiness will once again, be a part of me.

After I left Fernanda covered in glitter and my lipgloss all over her cheek, I ran home to take care of a few things. Lots of things. Lots of important but not really important things that fill my days. There are so many of those things now. All the things that come with the responsibility that I cannot just abandon because I just don’t care anymore. As much as I don’t care, I still have a responsibility to take care of things around here. Our house is so freaking clean and organized that I don’t even have laundry to do, Ro. Pathetic. I only wish that I were going crazy because of the millions of messes that I was cleaning up after you. You drawing on the walls, you spitting your food out across the table because you knew it drove me crazy, you climbing up the refrigerator and shoving food into your mouth, you taking a bath a pouring water all over the sides or splashing so much that I would have been drenched from head to toe. I wished for those days back, so badly.

I drove out to see Dr. Rachel today. The therapist your Daddy and I see. He couldn’t make it, so I went and saw her alone. It was good. It gave me a chance to fill her in on the life before I married your Daddy. A little bit of background. She wants to know why I’m so hard on myself. Where that stems from. She wanted to talk about the guilt that I seem to be consumed with. She wanted to talk about a lot of things but also said she didn’t want to undo any of my other individual therapy that I am doing. She respected my boundaries which I very much appreciated. I have a little bit of a guard up with her and I’m not sure why. I guess it could have to do with the fact that your Daddy and I both see her. It was glad to let her in a little bit. I would like to be able to let her in more, but I think it’s going to take some time.

Lots more to say tonight, but I’ve got an early morning run calling my name. Ro. Please help me out. I saw you on my run this morning; that little hummingbird that decided to show up, right when I wanted to stop. I didn’t stop. I hope you’ll be around tomorrow. I’ve got to get my running Mojo back if I’m going to kick this P.F. Changs Half-Marathons butt. Any extra push you can give me tomorrow would be great.

I love you to the moon and back. I miss you more than anything in the world. I am so lucky you were mine, for as long as I had you. You will change my life in ways that I’m not even aware of because I am stuck in this thick fog which you will help me out of, when I am ready. I know this. G’nite sweet boy. I hope you are safe. A million kisses to you. I’ll bet you miss my kisses so much you wouldn’t dare tell me, “IT’S NOT A KISSING DAY!!!!”

I love you, my not spicy, monkey boy.

xoxo

Goodbye summer 2011

Ronan. It’s late. It’s late and I am so tired. So tired, but I cannot sleep. I am trying tonight to sleep without my fucking Ambien. I think that drug is the devil. I think it’s making my mind go crazy. I don’t want to take it. All I want is to fall asleep, without the aid of any medication. I want to stay asleep for at least a solid five hours. I want peace while I sleep. That Ambien makes my nights too dark, and my days too sluggish. It’s effecting my short term memory…. I think. Ha. That was a joke. But not really, because it is. I cannot remember the simplest of things anymore. Dates easily slip my mind and I feel foggy. It’s apparent that I am going to have to take this stupid pill tonight to get to sleep. I’ve been trying to sleep for 3 hours now and it’s just not going to happen. To live in a world where even going to sleep is exhausting. A true prison indeed.

Ro. I started that last night. During my witching hours that I cannot escape. Yesterday was full of doing things as a family. My hands shake just trying to write about it. We swam, went to the Diamondbacks game for a bit, Liam and Quinn stayed the night with Mimi and Papa. Your daddy and I spent some time together. I have always had a hard time sleeping when the three of you would to together for a sleepover at Mimi and Papa’s, but last night was pure torture. Not having your brothers here to check on made me so sad. They needed the time with Mimi and Papa though, and vise versa.

Today was spent getting Liam and Quinn ready for school. Tomorrow is the big day. Liam is excited and Quinn is nervous. I am laying right next to him as I write, and I have been trying to ease his mind about things. I took him to dinner tonight and your daddy took Liam out for some one on one time. Quinn and I went to Houston’s. We sat and talked all about our summer and I did my best mother/son talk. I told him how great tomorrow was going to be and that he needed not to worry about me. I took out a piece of paper and we sat and wrote out what my day would be like, without him tomorrow, and without you. Seeing this written out seemed to give him a little relief. It scared the shit out of me because I have nothing of importance to do. I can’t believe I don’t have you to take care of. This is all such bullshit.

My mind is still refusing to believe this is all really real. I want so badly to remember certain things about you, but every time I do so, I am overcome with so much pain that my mind pushes the memories of you away and forces me to think about something else. Anything but you. Thought of you leave me breathless, my head spinning and tears pouring. I so wish this were a mind over matter thing and I could make myself feel less pain. I’ve always hated the word impossible, but now it speaks such truth. A happy life without you seems impossible. I feel still feel so empty, shallow, and numb.

August 9th is here soon. 3 months. Guess what else is here? August 12th. The date of your diagnoses just a year ago. I can’t believe it’s almost been a year. A year since our life was forever changed in the blink of an eye. I remember it like it was yesterday. It plays over in my head like a movie. I swear I remember every second about that day. Your daddy said to me tonight for as much as we hated hospital life, how he would give anything to go back to living that life with you. I couldn’t agree more. Hospital life with you was like living in freaking paradise compared to this.

I took Quinn on a bike ride today. 104 degree heat and all. We rode our bikes over to Tricia’s. I have not been to her new house yet and Quinn wanted to go on a bike ride. Perfect reason to go and see my bestie. We rode out bikes to her house in the blazing heat. It was fun and it felt a little good to me. I love being outside and I know it meant a lot to Quinn. We stayed at her house for about a half an hour; just enough time to cool off. Tricia is learning how to play the piano. It is something she started doing, just for you after you passed away. I sat on her floor today and asked her to play for us. She has been teaching herself and has one song down to a tee. I don’t even know the name of it, but sitting there watching her play today was so beautiful. I didn’t even fight back my tears as I was overcome with emotion. I felt so proud of her. So lucky to have her in our lives and so honored that she is your godmom. I felt a little sad too. Sad that her beautiful life now knows such sadness. I know it’s silly, but I think about things like this a lot. How if 6 years ago, if we had never met, then she would not know the pain of loving and losing you. I hate the sadness that I know she feels. She does not deserve all of this pain. I know none of us do, but for some reason, knowing the pain that Trish feels, hurts me so badly. I guess it’s because I love her so deeply; like a sister. I guess I get the reason why, but it doesn’t make it any easier. She told me you visited her in her dreams last night. I’m so glad for that. Thank you, baby.

Alright my little blue eyed boy. I am going to say goodnight now. Please watch over your brothers at school tomorrow. I miss you so much. I hope you are safe. G’nite, Ro. I love you to the moon and back.

xoxo

Life is suffering

 

 

 

Ronan. San Diego summer is over. Our first summer without you. We are heading back to Phoenix. Time to get back to reality. Time to try to start a new life, a different life. Time to try to figure out what this is going to look like. As much as I don’t want to, I have to. This summer was a complete and total blur. I feel like I’ve done a lot of crying. A lot of thinking. A lot of nothing but just allowing myself to feel the sadness that I feel from losing you. It was a place that I needed to be in, a place that I had to allow myself to drown in for a couple of months. I am trying my best to get my mind set in a different mode. I am trying to do my best to pick up these pieces that are shattered all over the floor. As of now, I have to do this for your brothers if no one else. I hope there will come a time in my life when I will start living for myself again, but I’m still not there. I’m still jaded, guarded, numb, mad, sad, angry and scared. But I have also found that with all of this I am able to feel glimmers of love, passion, laugher, peacefulness, and happiness. If anything, being able to feel myself feeling these things again, is saving me. Saving me from drifting off into a place that I do not want to go. Ever. My fighting spirit, and your fighting spirit will keep me going. I’m not giving up on you and I am determined to make a difference in this world. I am determined to make the most of this life without you. You wouldn’t have it any other way.

I met about a dozen beautiful people this summer who have been so touched by you and who are willing to help me with whatever I need to help make a difference. They all inspire me and I truly believe they will be behind me on this journey. I cannot wait to see the beauty that comes out of all of this love. I’ve taken the time to really soak up some things that have been said to me, but by one person particular. One person who knows truly knows the pain of losing a child. This one person who took the time to let me in, no questions asked. Who took the time to let me cuss, cry, to question and second guess everything; but somehow managed to shine a positive outcome on every fucked up thing that came out of my mouth. Normally, I would have thought this all to be bullshit, but this person doesn’t work this way. This person has shown me that I really do have two choices. To crawl up and die or to continue to fight and relearn how to live my life in a way that makes me happy. Full of passion, strength, happiness, light and love. I’m not going to fight the days that I do want to crawl up and die, because I know that I will have them. I am going to continue to be true to myself and I know how quickly everything can change, but I know that i do want to go on. I do want a life. I truly do have so many people to go on for. So many people who I want to make proud, so many people who I want to help, so many people who I want to make realize what really is important in life.
I don’t know what the future holds and I so used to think I had it all figured out. I remember the way your daddy and I would talk about our perfect life and the perfect picture we had mapped out. It’s been really hard to watch everything we thought was true, be completely ripped to shreds. Out of all the clich√©¬†sayings in life, the one that now holds the most meaning ¬†to me is to live everyday to the fullest because as I have now learned, life can be over in the blink of an eye. It shouldn’t be this way, but it is. As much as I hate to say this, life is suffering. As much as I am angry at what has happened to us, the fact of the matter is, it has happened and no amount of anger, sadness, and bitterness is going to bring you back. Our outcome, our life of losing you, will never change. I have no control of that but I do have a little control over the way I choose to live my life now. I don’t want to be “the mom,” who lost you and who let it destroy everything. I don’t want to be looked at as “the mom,” who can’t survive this. I want to be looked at as the mirror image of you, someone who possessed such strength and love. Who took on the world with such fire and passion and who never gave up. I’m not done with this world as I have too much to fight for.
I once had Mr. Sparkly Eyes tell me that one of the things about me, that left him the most curious, is the way I seem to live the life of half child and half adult. I thought about this for a minute, and I didn’t argue or take offense to it. I simply looked at him and told him, I had always been that way. I feel like you were me in every part of this way. And now I am you. We are one. I like the innocence and wisdom the we both possess¬†and I truly do feel like we have lived this life before, together, in the way that I feel like you were mine for a hundred years even though your time on this earth was so short. I don’t want my innocence to be lost in all of this but I now know that it is going to take on a different meaning in my life. I feel like I was put here on this earth to be more than what I am. I feel like you will help me to achieve this as there is now a fire that burns inside of me even as I sleep. I know nothing is going to get done in this world by hiding under the covers. I’m not completely ready to face the world, but I feel a little more ready than I felt a couple of weeks ago.
Ronan. I wrote all of that in the car while we were driving home. I blasted the music that would make me the happiest (Britney, of course) on my headphones. I tried to keep the tears to a minimum as I clutched your blanket so hard that my fingers turned blue as we drove past PCH. I swear I saw the two of us, in the old hospital building, on the 6th Floor staring out the windows like we used to do to watch all of the busy people going by. I started to bawl. I would give anything to be back in that hospital with you. I felt like pounding on my window and jumping out of the car to run up to the 6th floor just to see if you were really there. I didn’t. I stuffed my tears into your blanket instead and sniffed it to see how it smelled. Fresh and clean, just how you loved it after I would wash and dry it. You would sniff it in and take you fingers and rub them back and forth on your blanket while holding it up to your face. I cried for all of the other babies in there too. I no longer get to drive past and only think about how pretty the colors and lights are. What a fool I was. What a selfish, unaware person I was. I’ll never be that way again.
We made it home. I’m more of a wreck than I thought I would be. Crying everywhere. In my room. Holding your ashes. In your room, on your bed. Looking at your little easel that you had taken pen on and colored all over the chalkboard part of it, instead of using chalk. That will be your last drawing on that easel. I’m going to save it forever. My head is spinning at looking at all of your stuffed animals you slept with in your bed. I just want to lay there with them forever. I had to take my Ambien. I have to pass out because all of this is too much right now. I thought I was going to be able to do this, but was I fooling myself? I feel back I’m right back to where I started and the pain may feel even worse. I need to go to sleep, Ro. Before I start writing crazy shit on here. Before I start to go off on the whole God and Devil thing. Before I start to go off on the person who told me I won’t see you if I don’t believe in God. Fuck that shit. I’ll save this rant of mine for later. I had a pretty positive day, until now. Now, it’s time to go into my dreamless sleep. Maybe in your bed, with your things surrounding me.
We are home. But it will never be home sweet home, again. I love you Ronan. My heart hurts. My head hurts. My fingers hurt. My eyes hurt. Everything hurts knowing that you are not here. I love you, little man. I love you to the moon and back and I hope you are safe. G’nite baby.
xoxo

The summer of the Dolphins

Ronan. I’m not sure what I have written in these past few posts. I think they have been a little dark, scary, and sad though. I’m sorry. I had a better day today. I promise. I tried my best. We took your brothers for lunch and were deciding on going to the Zoo or to play football. They chose football. You would have loved it. You were missed by everyone. It still feels so strange, it just being the four of us. Not right at all. But we made the best of it that we could. After Football, your daddy and Liam went to run some errands. Quinny and I hung out here. As soon as they returned, I had a craving for Pinkberry. Quinn and I hopped in the car to drive to downtown San Diego to pick some up. As I was texting Liz to see if she wanted any, she told me to come over to the bench that she and her mom were sitting on, in front of the El Camino Pool. I parked and walked over with Quinn. Liz started to tell her mom to tell me what they had figured out about all the dolphins we have seen. Karen said no, not in front of Quinn. I sat and just watched the ocean. About 5 minutes later, Quinn spotted the dolphins. Liz started crying. Karen and I held her as the tears rolled down her cheeks. I wasn’t aware of what they had figured out, but I knew it had something to do with the dolphins, Ronan, and me. It has been a strange dolphin summer. Every time I am out by the ocean, they just appear. Liz told Karen tonight, if they appeared when I came over to sit down at the bench,she was going to freak out. They appeared and that is when she started to cry. I knew why. We all know why, Ro. It is your sign to me that you are o.k. That you are happy, playful, and loved….. wherever you are. When I tried to get out to the dolphins on my paddle board the other day, as soon as I got out into the water, they all disappeared. It was weird. The second I was coming back into shore, they appeared right behind me, where I had been moments earlier. It’s like you are telling me, you can see me, but you can’t get too close. You will see me again, but it’s not time yet. You still want me to know you are here, you will always be here until we are ready to go off in our own little world together. I cried on that bench today too with Liz. She then went home and looked up some dolphin symbolism. So beautiful.

Dolphins seen in Christian art are symbolic of resurrection. Some artists utilize the protective, stabilizing, compassionate demeanor of the dolphin as a message of wellbeing to the pure of heart. Some artistic renditions speak of dolphins transporting the spirits of the faithful to Christ’s side upon leaving their physical bodies. Also in Greece, the dolphin is a compatriot of both the god Apollo (sun) and the goddess Aphrodite (moon).This is a key understanding because the dolphin meaning is connected with themes of duality. It has to do with the dolphin being both fish and mammal. It is both of the water, and an air breather. Ergo, dolphin symbolism talks to us about “being in two worlds at once.” Poseidon (Greek), Neptune (Roman)
Themes of kingship, rulership, authority, strength, dominion, freedom, intelligence, compassion and fatherly protection over the entire kingdom (sea).
Eros (Greek), Cupid (Roman)
These gods contribute dolphin meaning of: Love, friendliness, playfulness, sensuality, desire, exploration, curiosity, attraction and joy.
Dionysus (Greek), Bacchus (Roman)
These deities underscore the dolphins ability to uplift, and carries themes of joviality, freedom, wildness, abandon, creative self-expression. The term delphi is noteworthy as the Greek word for dolphin is delphis and its derivative, delphys means womb. This incorporates more lunar and feminine attributes to the dolphin scene. In Celtic animal symbolism, the dolphin as a highly honored creature as it was seen as the protector of sacred wells and sacred water. The dolphin, to the Celtic mind, is the watcher of the waters, and the guardians of all things water-associated. Pirate lore also hails the dolphin as a symbol of protection.

From my love, LIZ::::::: I know you’ve want to see Ronan in your dreams, but I swear… these fucking dolphins, Maya. My mom said when you guys were talking by the pool yesterday, they were there the entire time. I have no doubt in my mind they are the sign you’ve been looking for. I hope you can sleep better tonight knowing that Ro is always ALWAYS by your side. Love you so much.

I do believe this. It’s happened too many times for me not to. I can’t think of one time that I have not been out by the beach and not had them be there too. At the exact same time I am. I know they don’t just hang out there all day and night. It’s a sign indeed. A beautiful sign from my baby boy. Thanks, Ro. You know I needed that, especially after my hard couple of days.

I took Quinn to Pinkberry tonight. He is my little sidekick. Stuck like glue. He is sleeping between your daddy and I with you GiGi on his head. Just like the way you used to sleep with us after you got sick. I miss watching you sleep. I miss you squeaky voice so much. I’ve got to figure out how to get through this without you, Ro. I’ve got to “flip the switch,” as my friend says. I wish it were that simple, that easy. I need a better attitude?? I need to not miss you so much?? I need to find things to occupy my time?? Are those the answers? I don’t know. I hate the unknown. It’s days like today that I am happy that I got out of bed before 9 and I did my best to play with mommy role that feels so unnatural without you. But I did it. Sucked it up and did it.

I got a random text from my little 17-year-old airplane pal. I have not heard from him in forever. He said he was having a bad day, he is lonely, and he is tired of the drama with girls. This made me smile. Not to take away anything from what he is going though at 17, but what wouldn’t I give for those problems. He told me at 17 he just wants someone to share his life with. I told him the only people he needed to be sharing his life with at 17 are his friends and figuring out what truly makes him happy. I told him it could be a lonely journey, but it will be worth it. How if you take care of yourself first, everything will just fall into place. I told him how I understood, how at 17 I felt very restless and wasn’t really sure what I wanted out of my life so I took the time to leave my town and just focus on me. I never looked back. I told him how I have learned the very hard way how precious life really is, how I will forever be destroyed because I don’t get to watch you grow up. I told him that he, Bryson, has everything, right in front of him. My advice to him was not to let the petty things get him down, to take this time and live his life for him and nobody else, travel, get out of Utah, read books, run, play sports, study, fall in love 10 different times, make mistakes, learn from them, and then make them all over again. I think he liked what I had to say as he told me that I had just made his life sound 10 times more exciting. Glad I could help:) You are a good kid, B, so you will be just fine.

OK baby boy. Ambien nights are here. I love you to the moon and back. You are my heart, my soul, my everything, forever. Nothing can take that away. Sweet dreams, I hope you are safe.

xoxo

Game over! I lose, you win! Bring back my baby!

Ronan. Hi my baby. I have not written in a few days. I’m sorry. It’s hard for me to write when your daddy is here and your brothers do not go to bed until super late. I’m not sure what we’ve done. The usual, except these past two days have been really hard on me. Struggling with a lot of things I guess. Panicking that we are coming back to Phoenix soon. I don’t know how I’m going to walk into our empty house without you. How I’m going to go back to our life without you. I’ve done a lot of crying. A lot of screaming. A lot of this cannot be my life. But it is. Nothing can change that.

I remember feeling o.k. just a few days ago. I remember laughing with Liz as we decided to rent paddle boards and take them out in the ocean. We somehow managed to get those monstrous beasts in my car. One stuck out the sunroof, the other one out the back-end of my car as we drove though town with my trunk open. We broke just a few traffic violations. Once we got to the beach, we put on our sunscreen and took our Orange and Lime Green Zinc sunscreen on and wrote “Ro,” on one side of our cheek, and a big star on the other. I told Liz that it was our way of taking you with us and you would protect us from Sharks;) Genius idea. We took Liam and Quinn out with us first, somehow managing to get them past the break of the waves. Quinn was on my board with me as I swam us out further into the ocean. I crawled up on the board with him as I listened to him tell me how we were out too far, how he didn’t like it, how he was scared. I validated all of his feelings but also explained to him that he needed to take in a deep breath and just look at nature and the beauty of the ocean. I talked to him about how important these experiences were in life, because if you don’t take chances trying new things, the beauty of things will never be discovered. He listened to me, but didn’t seem to buy much of it. I paddled him back into shore, and he played on the beach while I went back out into the ocean. I fell in love with paddle boarding or Sup boarding as most people call it. It’s a lot harder than it looks and I was told by a friend, that you are supposed to learn how to do it in the Bay first, then move on to the ocean. Oh well. Go big or go home, right? It was a really peaceful experience although I did get a lot of bumps and bruises. I think Liz may have almost broken her foot due to a wipeout from a wave. Auntie Karen is convinced she needs an x-ray. The thought of just watching her live life and doing something new makes me smile though. I have learned the very hard way just how precious life really is and it makes me so sad to know that you will never be out there paddle boarding. It helped to have Liz there. And also, the dozen of dolphins that appeared. Liz kept saying what a great day it was. I couldn’t have agreed more.

Yesterday, I woke up early as I wanted to have a productive day. I know what happens if I don’t get myself tasks to do or something to wake up for as that is exactly what happened today. I got up before anyone else, I ran to Chula Vista to the car wash there. It is the one I used to always take you to. I got the car washed and on the drive home, I started to panic. The pain and memory of being there without you was just too much. I called Tricia and cried to her, screamed to her how I just wanted you back. How scared I am to go on without you. How I don’t want to. I sat in my car after I got off the phone with her and sobbed for 2 hours. I talked to Doriet for a good half an hour. We talked about you and Esther and how hard of the time we are both having. We seem to be in a very similar place. I talked to Mr. Sparkly Eyes. He did the thing he is best at which seems to be calming me down with his stern, yet compassionate words. He ended the conversation by telling me to get my ass out of the car and inside the house. I listened.

Once inside the house, I showered and tried my best to pull it together for the sake of your brothers. I put on my best “I’m dying on the inside, but smiling on the outside,” act. We went to lunch. I ate my half of sandwich. I threw it up. We got in the car and drove to the Del Mar race tracks. Bad idea. We acted like the perfect family. Somebody in line, waiting to bet, commented on how cool it was that we took our boys to bet on some horses. I just smiled. We went outside and watched a couple of races. My head was spinning. It seemed as if everyone around us was smoking. I couldn’t stop obsessing about it. I finally looked at Woody and said to him, “Look at all of these people, smoking. Why are they doing that?” He just shook his head. Everywhere I looked, people were drinking, laughing, all dressed up. Life was going on. How could it be? How can all of those people, just go on like you are not gone? How do they not all know about you?? I made us leave after about 45 minutes. It was all I could take. Once we got back to our condo, I told your daddy and brothers that I needed a little quiet time. I went down to the pool and sat with Auntie Karen for a couple of hours. I sobbed to her about you. I talked to her. She is worried, she is sad, she is hurting, she is missing you. She sat and held my hand and told me how I can get through this, how I will get through this, because I don’t have a choice. I told her I just wanted to go to sleep and never wake up. She talked about how that isn’t what you would want, how that wouldn’t be honoring your life. I told her I knew, but all I want is to be with you. She said that she thinks you are always with me. I still wonder where you are. After my day of crying, I somehow managed to get back upstairs and I put myself in bed. I popped an Ambien at 8:30 p.m. Lights out early for me, which I never do.

Guess what time I got out of bed today? 2:00 p.m. Bad mommy. I couldn’t do it today. I slept and cried and slept and cried. I held on to your blanket. Your daddy tried to pull me out of bed. I told him I hated him. I told him he promised me you wouldn’t die. I told him to bring you back. I said a lot of mean things that I shouldn’t have. I am human. I make mistakes. I am sorry for my words, as I didn’t mean them. It is as if I am turning into this person who is going to let cancer win. I’m spinning out of control into a world that I don’t want to be in, but I don’t know if I have the strength left to fight it. I’ve fought this since the second you got sick. I’m tired. Am I going to have to fight this hard for the rest of my life?? Will I ever feel normal again?? Will there ever come a day that I can just do something so simple and sweet like enjoy the sweet San Diego sun without feeling like a knife has just been ripped through my heart when I see families with their 3 boys, riding bikes around the island??

Today, after your daddy pried me out of bed, I got up and showered. We headed out for a movie. Captain America. I was restless. Quinn didn’t like it. I took Olivia and Quinn to the bathroom in the middle of the movie. We didn’t go back to our seats after that. I couldn’t sit still, I couldn’t concentrate, my mind kept wandering to places it shouldn’t be. The 3 of us walked around Fashion Valley instead. We met your daddy and Liam at P.F. Changs for dinner. We colored a Kitty Cat for Liz and sent her a picture of it. I engaged as best as I could. I played a game of scrabble with Liam on my phone. He beat me. I was happy to let him;)

Once we returned home, I slipped out for a much-needed 8 mile run. I ran at a fast pace…. 8:08 tonight. My whole body hurt but I didn’t care. I don’t care. Whenever the pain sets in I think of you. I think of you and all that poison they put into your little body. I think off all the surgeries, the bone marrow aspirations, the pokes, the prods, all the things that caused you pain. You pushed through it so I will too. I talked to a friend tonight about you. He told me everything I already know but I need to hear it. He told me how it is unacceptable to lay in bed all day, how it is unfair to Liam and Quinn. I know he is right. I will try harder tomorrow. We only have a little time left here. It is important that we make that time special. I don’t want them ending their summer going back to Phoenix with memories of me not getting out of bed. That is so unfair to them. Do you want to hear the saddest thing yet? Quinny, your 8-year-old brother, thinks it’s his job to take care of me. Quinn. I was in bed tonight, reading and he was walking all around, putting things away, asking me if I needed dinner because I didn’t eat. He asked if he could make me a sandwich. He asked if he could bring me a water and then did and opened the bottle for me. He put away my camera that was out of its case. He finally laid down by me with his iPad. He said he wanted to write to you. This is what he wrote:

To Ronan today we went to see a move to see caption america i love you ro from Quinn

He also wrote this:

Good Night ronan I love you from quinn to ronan

As I read it he laid his little head down on my arm. I whispered in his ear that you love him too. 3 seconds later, I felt warms tears dripping on my arm. They were his tears. I grabbed him, held him, told him how sorry I was, how I would do anything to bring you back. I sat and we cried together. I told him how important it is to cry about you, how healthy it is for us because we cannot keep it bottled up inside. I told him how proud I was of him. He soon fell asleep in my arms. The angle of his face tonight from where I was watching him, looked exactly like you Ronan. I see a lot of you in Quinn all of the time. It makes me smile. After Quinn fell asleep, I tried to join him, without my Ambien. FAIL. I slept for maybe an hour, but tossed and turned. I just had to pop one about 20 minutes ago. Here we go, coma induced sleep. It’s not good for me and my dreams are fighting to come out. I have remembered a couple of them. I never get to see you. I’m always talking to people and they are always saying how sorry they are that you are gone. I’m always the mom who lost her son. I can’t be that mom for the rest of my life. I have to make something bigger come out of this so I won’t get overshadowed by that title. Tomorrow will be a better day, right?? It has to be. I’ve got to get out of this bad place that I am in. Like Doriet said to me, we have 2 choices, to either live this life, or not. And if we do decide to stay, then we have to live it to the best we are capable of. Laying in bed all day is just not the answer. So if that won’t work, then what will? That is what I have to figure out little man. I need your help more than ever.

I know I am going to need deep, intensive therapy when we get back. So is your daddy and the boys. I’ve got to deal with this stuff head on or else it is just going to fester and get worse and worse. I am ready to start working hard to save myself. If I can save myself, I feel like I can save everything else that needs to be saved. I might actually be able to go on as a wife and mother. But that’s not going to happen if I don’t start doing some seriously deep grief counseling. This will become my job for a while. I’m so pissed I want to punch this computer screen. I don’t want this job. I want the job of taking care of you, Ronan. JUST FUCKING COME BACK HERE ALREADY! ENOUGH IS ENOUGH! THIS EXPERIMENT IS OVER. I FAILED. I FAILED BECAUSE I AM HALF A HUMAN BEING, WIFE, MOTHER WITHOUT YOU. YOU WIN. PLEASE JUST BRING HIM BACK TO ME!!!! I scream these words all the time. I have decided that I am not sane anymore. Hey, at least I’ve got that figured out. At least I’ve got that going for me. Lock me up and throw away the key. I don’t care.

Ronan. I’m sorry if I’m making you sad by being so sad. I would never want that. I hope you still believe in me and know I can still do this. But mommy is going to have more bad days then good for a while. At least that’s what they say. Seems to make sense. I’m sleepy now. I miss you so much. I love you to the moon and back my favorite not spice monkey boy. I hope you are safe. Sweet dreams, Ro. Please visit your brothers in their dreams tonight. They need you.

xoxo

Just say no to death do us part…….. time to update wedding vows people. What if your child died? Did you ever think about that while saying them???

Ro

Ronan. Hi my love. I hope you had a good day. That sounds so weird to say, because how could any day possibly be good when we are apart?? I miss your giggles so much. The world is so empty without them. I know I say this all the time, but I would give anything to have you back. I tell you all the time to please take me with you. I know you can’t, as you wouldn’t do that to your daddy or brothers but I miss you so much.

Today was a long day. The kind of days that I seem to have pretty often now that you are gone. I managed to keep Quinn busy though. We hung out at our place and then I took him and Olivia for lunch. We came back to the condo after and hung out. Olivia helped me clean everything as we needed to get ready for Liam and Papa Jim’s arrival. She is such a big help to me. Quinn looks up to her like a sister and she is a really good playmate for him. He gets lonely when she is gone as he loves having her around. I do too.

After we cleaned, we got ready and met up with Liz. The 4 of us walked and had sushi. It was a nice dinner but it always feels weird to be doing things without you. Between, Quinn, Olivia, and Liz, I was able to keep it together as they all provided much laughter. We walked around the island a bit and started making our way back to The Shores. As we were crossing the street, I looked up at locked eyes with a mama who was pushing her little boy in a stroller. I was dying inside because of her little boys amazing, curly, red hair. I smiled at her and she looked at me and goes, “Maya!” She approached me and introduced herself and gave me a warm hug. She follows this blog as does her sister whom I had the pleasure of meeting as well. We have mutual friends and the friends we are all friends with are GEMS….. so I know these two women must be as well:) We chatted for a few minutes and I managed to only get choked up once. It was so sweet, so rewarding, and it just felt good to hear them say that they think about you everyday. How I will never be without you because you live in each and every one of them. How you’ve inspired them to do something more with their lives. Nothing will ever be worth losing you for, Ro. But in losing you, people are finding what it truly means to live a life you are grateful for. Do I hate that it has to be you and me teaching this lesson? Absolutely. But we cannot control our fate, our destiny, what is being set out in front of us. It is not up to us so we have to just give in and trust that this is what our purpose in life is supposed to be. To help others see their way, to help them be more grateful and kind, to let them help us by raising awareness for you and Neuroblastoma or childhood cancer in general.

As I was talking to those two beautiful ladies today, I honestly felt you there by my side. It was weird. At one point, I looked down at my feet to see if you were there. That is how much I felt your presence. I then looked over at Liz and gave her a teary smile. Liz is my home, my heart, part of my soul. She gets it. She knew you were there today too….. I could tell just by looking at her. I was honored to meet both of you today and just wanted to tell you thank you again for loving and supporting strangers whom you didn’t even know, until today. I can’t wait to see you again.

After our “meeting random strangers,” whom I don’t know but they pretty much know everything about me…. which is weird but I’m oddly comfortable with it….. we went back to our condo. It as time to get ready to pick up Liam and Papa Jim at the airport. It’s been nice having some one on one time with Quinn. He’s really opened up to me and we had some pretty intense conversations. He is like a little sponge and never forgets anything I do or say. I got to watch him open back up to me again and he told me how hard it was on him to not have me around to take care of him when Ronan was sick. I told him I knew, and that it was hard on everybody. But we didn’t have a choice. We had to take care of Ronan the best we could and I’m sorry that I had to be away from him for so long. I hope he will forgive me. I would have done the same thing for him and I tell him this all the time. I just hope he really believes it. An 8 year olds mind is such a fragile thing when dealing with a tragedy. I don’t have all the answers and this is when the therapy will come into play when we get back. I recognize that we all will be needing it pretty intensely.

I was thinking about this the other night on one of my runs. For some reason I started thinking about wedding vows. The whole, “Until death do us part.” I couldn’t stop thinking about it and I thought to myself, I’ll bet when people say those vows, they don’t take into consideration if the child would be the one to die….. would death do them part?? I think people say that vow just thinking of one another, as man and wife; never a child because that is just too horrific and does not happen. WRONG. BIG FAT LIE. It happens. And I am so freaking glad Woody and I did not say those vows to each other. Not that they are awful…. but we are just different. We had E.J. Kotalik marry us because it was important to us to make them a part of our family. I never knew how much we would truly need them. We now need them more than ever. We didn’t read the traditional vows. We read a poem by¬†E.E. Cummings, instead.¬†One of my favorites:::::

i carry your heart with me (i carry it in
my heart) i am never without it (anywhere
i go you go, my dear; and whatever is done
by only me is your doing, my darling)
i fear
no fate (for you are my fate, my sweet) i want
no world (for beautiful you are my world, my true)
and it’s you are whatever a moon has always meant
and whatever a sun will always sing is you

here is the deepest secret nobody knows
(here is the root of the root and the bud of the bud
and the sky of the sky of a tree called life; which grows
higher than the soul can hope or mind can hide)
and this is the wonder that’s keeping the stars apart

i carry your heart (i carry it in my heart)

It was perfect for us and still is. And whomever is telling my mom the statistics for people who divorce after the death of a child….. Seriously needs to stop. This is not something a grandmother who has just lost her grandson and who is worried sick about her daughter, needs to hear. I know the statistics, Woody knows them. We know who we are. We know that throughout all of this, we’ve stayed on the same page with pretty much everything. We know we are each others best friends. He has my heart and I have his. Forever. End of story. We don’t do drama, we don’t do hurt, we don’t do fighting (unless you count the time I threw a slurpie at his head) We do love. We love our twins. We love each other. We are not going to let cancer ruin anything else for us. MOTHERFUCKERCANCER. You’re not taking anything else away from me. You took the most precious thing that has ever been mine and I will fight you until you die and exist no more. YOU FUCKWAD.

Oye! Ronan! I’d better be signing off now. Before I get too bloody out of control! I love you my not spicy favorite monkey. I hope you are safe. I hope someone is taking good care of you. I just want you back here with me. Please. This life is too hard without you. I LOVE YOU TO THE MOON AND BACK RO.

xoxox

Oh Ro….. what am I going to do without you??

JUNE 9th……………………..

Ronan. It’s almost been two months. Two months since you left me. How is this possible? It makes my head spin. It’s 1:30 in the morning…… 3:30 a.m. will be here soon. That’s around when you took your last breath. When I kissed your lips and whispered in your ear to come with me so we could get out of this place. I still can’t believe all this has happened. How my worst nightmare, really came true. I was so sure you would get better. You were going to beat all of the awful statistics and live to be a normal, healthy boy. You were so strong, so brave, and so proud. I remember how the day before you passed away and you weren’t really going to the bathroom anymore. I kept trying to get you to go. Finally, you told me in your squeaky little voice that you needed to pee. You didn’t want to go in the urinal right by your bed, you made me carry you to the toilet even though you were in so much pain that it hurt for me to even pick you up. I carried you to the bathroom and set you down on the toilet. Your little body was so skinny and frail that it took my breath away. But you were so proud. Too proud to do the easy thing and just use the potty by your bed. You always hated that thing. You held your chin high as cancer tried to take away your dignity. It never won. Cancer may have taken your life, but it never took away your pride. It would have been such an easy thing to give up and I don’t know that I know many souls in this world that would have put up such a fight like you did. I feel so privileged to be your mommy, Ro. You are so amazing in every way.

New York Miss Macy left today. Everyone was sad to see her go. Quinn and I took Olivia with us for the day as he wanted to go to a movie. We ended up seeing, “Turtle: The Incredible Journey. It was all about a little Loggerhead turtle and her journey in life. Her purpose, which ends up being to travel the paths of her ancestors, only to return home 25 years later to give birth to her offspring while¬†fighting every odd stacked against her along the way. Only 1 in 10,000 turtles survive this journey. Throughout the movie, I felt as though the turtles journey is similar to mine. It may sound weird, but so many things that happened in this movie made me feel so vulnerable and struck such a chord. It started with the fact that these babies are buried alive after they hatch out of their shell and it takes 3 days for them to dig themselves out of the sand. Yup. I know a little something about feeling like you are buried alive just like you, little turtle. The baby, who is the size of a small child’s hand, has to leave the beach for it’s new world of the dangerous ocean. Many of them do not make it due to being eaten by crabs, birds, or the oceans waves are just too tough for them. The Loggerhead turtle, has one of the most difficult and longest migratory patterns of any marine animal. It reminds me of a bereaved mother. After you lose a child, it is almost like you are born again and thrust out into this cruel, cruel world. You are expected to survive it by everyone, you are expected to do as others think they would do, but the truth of it is….. we are all different and will follow our own instincts to hopefully return to our place of peacefulness and our home once again, when we are ready to go there.¬†Just like the loggerhead turtle.

It is a very long journey and the turtle has to continue to fight, without giving up. They are survivors. Just like a mom who has lost her child. A mom who is just trying her best, trying to pull herself out of bed everyday; ¬†to do what is somewhat normal for her kids so they can have days like yesterday where one of them spends time with his very special Papa Jim, and catches his first Salmon. Where the other one, spends his day with his mama and all of her amazing “sisters.” I have not heard Quinn laugh so much since he was with Ronan, before he was sick. Do I feel weird being out and about, laughing away?Absolutely. But I am not really doing this for myself. I am doing it for my children. I want them to look back at this summer and remember being surrounded by the people who love them so much and to remember all the laughing and silly bonding time we had together. I want them to be able to see that even though I cry a lot, I can still laugh. Even though it is the saddest summer that we’ve ever had. I cannot let my children drown in their sadness like I want to. I will not have them secluded and take away any more of their childhood, any more of their innocence. They deserve to have as much normalcy as possible.

After 25 years, the Loggerhead turtle grows into a big strong turtle and is no longer afraid of the ocean. She develops a big, hard shell and very thick skin. If you have ever lost a child, this is a necessity for survival. Especially if you have decided to share your inner most thoughts and feelings though a blog for everyone to read. You really need a thick skin for that one. Luckily, I have always had thick skin so I’ve pretty much got that covered. The hard shell can be for my hard head, as I tend to be pretty stubborn, or so I’ve been told. My point being, that while watching this movie today, and seeing how many obstacles this little turtle had to overcome to survive, I was forced to think about my new life without you, Ro. It is so hard to go on, move forward, and not want to just give in and sink to the bottom of the ocean. This little turtle could have easily given up. So could I. But I keep telling myself I am a ¬†survivor just like the turtle.

JUNE 11th……………….

Ronan. I did not finish the post above due to falling asleep. I have no idea what was written above as I don’t go back and re read the things I write. I hope it made sense. I think I remember something about a turtle…….. Everything is blurry. I don’t even know what has happened since I last wrote. Except I am still in miserable, extreme pain. My head hurts, my shoulders still hurt, my toes hurt, my heart hurts….. everything hurts. I think I managed to run 6 miles last night though. I think I have managed to get out of bed the past couple of days…. although not until at least 11. I think yesterday was the 2 month date of you being gone. I remember staying up really late the night before and crying with your daddy. I remember waking up the next morning and my head felt so heavy that I could not get out of bed. I remember talking to Mr. Sparkly Eyes and just crying in the phone and telling him how I couldn’t get out of bed, how I couldn’t believe it had been 2 months. He begged me over and over to get up and get out of bed. I told him I could not. I laid there for an hour after talking to him and I couldn’t get the sound of his voice, out of my head. If it wouldn’t have been for his words, ringing in my ear and not going away, I wouldn’t have gotten up. I made myself get up out of bed. I think we went to the beach with Auntie Karen, Liz, and Olivia. I surfed. Quinn fell asleep in the sun. Later in the evening, as we all sat there together as the sun was setting; dolphins appeared. They always do for me. Auntie Karen said it was you. It made me smile. Last night, I fell asleep really early. Well, really early for me. I remember cuddling up with Quinny and we fell asleep around 11.

Today, I didn’t get up until 11. Seems like if I don’t have a reason to get out of bed, I’m just not going to. Your daddy was up with Quinn, playing video games. I texted Liz and asked what they were doing. They said they were going to the Farmer’s Market in Hillcrest. Your daddy, Quinn and I met them there. We walked around and ate some food. I bought some humus. That and rice pudding seem to be the only thing I can keep down. Weird combo. After the Farmers Market, Auntie Karen took Quinn home with them. Your daddy and I needed some time together. We walked back to our car and held hands. It felt nice. We decided to go and see a movie. We saw, “Horrible Bosses.” We both agreed it was o.k. We had some laughs.

Lots of signs have happened the past few days. It seems as everywhere I go…. Coldplay is on the radio. I swear, I heard it 4 times in a row a couple of days ago. We always loved to listen to them together. Something else happened today. After the movie, your daddy and I walked into Nordstrom Rack as it was right by the theater. He went off to look at ties and I was looking at shorts. There was a lady right next to me and her little girl, who looked to be about 3, was playing right by me. She was hiding underneath the clothing racks which was one of your favorite things to do. I heard her mom call out her name. It caught my attention. I looked up and said, “What’s your daughter’s name?” as I was sure I had heard her wrong. She goes, “Ireland.” I just looked at her, stunned. I told her how your daddy and I had picked that name out about 9 years ago if we ever had a girl. I then had to walk off because I just started bawling. I walked around and found your daddy. A few minutes later, the little girl and mommy walked past us. I pointed her out and told him what had just happened. He seemed a little shocked too. The fact that the name is so uncommon, that this Ireland girl just happened to be¬†in the same spot as me, the way her mom just happened to call out her name……..it kind of shook me to the core today. I can’t stop thinking about it. I wonder if it was your way of telling me that you are still here. That you are really watching over me. I think it must be. I can’t think of any other reason that would have happened today. It had to be you.

I talked to Fernanda tonight. It has been so long since I have heard her voice. She is still in Mexico. She picked up the phone and goes, “Buenas!” I squeaked, “Fernanda…. hi….” She goes, “Who is this??” I said, “Maya.” She goes, “Oh, Maya, Maya, Maya……I miss you so.” I started sobbing into the phone. I was overcome with how much I miss her and thoughts of you. We talked for a good half an hour. She has been having such a hard time, just trying to get back to her normal life. It will never exist for her again either. We talked about you. How this feels like a life sentence. How cruel it was to have you and then to have you taken away. How if she hears one more person tell her God needed another angel she is going to fucking lose it. Fuck that saying. It’s bullshit and the only people that say that, are people who have never lost a child of their own. We talked about what we are going to do once school starts up again. How she will help me find my way because nothing that I do, if not in honor of you, will make any sense. We both want to do something more with our lives than driving freaking carpool. We both feel the need to help other babies and families. I don’t know how we will do this yet, but I promise you, something will be done.¬†She will be here on Friday. I cannot wait to wrap my arms around her. I hate being so far away from her.

Quinn is asleep next to me. We had a good night together. I talked to Liam and he will be back tomorrow night. I can’t wait to see him. We have missed him so much. I am so proud of him for going to Washington without us. He is so brave and independent. I know he has had the best time. It meant so much to Nana and Papa.

Ok my baby boy. I’m going to try to get some rest. I miss you so much. I love you, Ronan. I love you to the moon and back. I hope you are safe. Sweet dreams.

xoxo

And P.S. To all the people on my husband’s flight back to AZ tonight from San Diego….. you embarrass me. A family of 4 asked if anyone would switch seats with them so that the two parents could each be with one kid, so they wouldn’t have to be separated. NOBODY offered. Except Woody. My 6’6 husband gave up his aisle seat to sit in a middle for them. WTF is wrong with you people??? There should have been at least 10 people offering to give up their seats. Such little acts of kindness are things my husband has been doing his whole life. And he, the person who deserves it LEAST in this world, just had his son die of cancer. Fuck all you mean people. As my dear Charisma would say, “RUDE.” Miss you CC. Miss you Big Daddy Woo. Love you both.

Love and the Locket

Ronan. It’s days like today that give me just a sliver of hope that I am going to be o.k. That being without you, won’t kill me. I know this because today….. I felt something that I haven’t don’t feel very often anymore. Almost happy.

The morning started off as usual. We woke up around 9 and Quinn had asked to have a day at the beach. We texted Auntie Karen to see if Olivia could meet us. She sent her over and we headed out to enjoy the San Diego sun. We went down to the beach and spent a couple of hours there, being lazy and then we swam in the ocean for a while. We headed up to the pool after we got tired of the sand and the flies that seemed to be everywhere. We spent the next couple of hours at the pool and Quinn and Olivia played their little hearts out. Auntie Karen joined us for a bit and we sat and talked about you. She misses you so much. It felt nice to talk about you with her though. She told me how you will always be with her. I know this. You are part of her and always will be. She will forever be your favorite crazy “old lady.” We still giggle all the time about how you would call her this.

After our pool time, we got ready for the evening. Susie drove over from Mission Beach to see us. Macy, Quinn, Susie, Olivia, Liz and I all walked into town to have dinner. All I have to say is your New York Miss Macy is like chicken noodle soup for my soul. She makes me laugh like no other. Somehow, when we were with Liz a few nights ago, Macy started talking in her fake British accent. It caused Liz and I to crack up because it came out of nowhere and it was so awful. We have been teasing her about this for days now and it has turned into a huge joke. Tonight, we spent most of the evening being loud and laughing, while we all talked in our fake British accents. It was an evening full of taking silly pictures, British accents, laughing until our sides hurt and just having wonderful, innocent, fun. Quinn was in heaven and joined in and soaked up everything that we were saying and doing.

After dinner, Susie had to head out and the rest of us headed down to watch the sunset at the beach together. As we were setting our things down, I took off the locket that Macy bought me last week. She found it at a shop in North Park while we were waiting for our table at a restaurant and fell in love with it. She bought one for herself and one for me. It’s gold, long, heavy and we talked about how we would put a beautiful picture of you in it. It is so gorgeous and has become one of my favorite pieces of jewelry. Just knowing that you are close to my heart and inside of it, brings me such a feeling of peace. I took the locket off tonight and set it in one of my shoes. I ran off and forgot about it as we spent the next couple of hours playing on the beach, doing hand stands and silly things.

As it started to get dark we decided to head up to the Hotel Del to get ice cream. As we got there, Quinn asked to go into the toy store instead. We all agreed as the line for the ice cream was really long and it was hot and stuffy in there. We played in the toy store with him for the next 30 minutes all while still talking in our very loud British accents. We were getting ready to leave and I noticed my locket was not on my neck. I immediately went to my purse to see if I had put it in there. No dice. I panicked and told the girls that I had a slight emergency as I remembered I had set the locket in my shoe at the beach. Macy and Liz stayed with Quinn and I grabbed Olivia to come with me. We rushed back to the beach and tried to retrace our steps as best we could. Luckily, we sat and played by a very big hole in the sand which is how I got us back to the spot to where we were sitting.¬†Turns out, this hole was not as helpful as I had thought because we did set our things down kind of far away from it. I knew was at least a starting point and it was better than nothing. We started searching for my locket and I could feel myself starting to panic. It was pitch black and the beach just looked so big; like it could have swallowed us whole. That is how I felt and right as I could feel the tears to begin to pour down my cheeks, Olivia yelled, ” I found it!” I could not believe my ears. The locket was half buried in the sand, it was dark, but somehow Olivia found it. A wave of happiness washed over me. I hugged Olivia and told her thank you. That sweet girl saved me today. It was such a good day and if she would not have found my necklace, the day for me would have completely been ruined. I know it is only a material thing, but the fact that Macy bought it for the both of us, to keep you closer to our hearts means so much to me. Thank you too, Ro. For helping Olivia tonight. I know that was you. I know you wanted me to have a good day today as you know how much I need that every once in a while.

We all came back up to the condo and I headed out for a quick run. It was late, so I didn’t do my usual route of 6 miles. I did a fast 4 instead. Macy wouldn’t have it any other way because of the fact that it was so late but she knows how I am if I don’t get my run in. She let me go but not before I gave her an exact time of when I would be back. I’ve given her the name of “wife,” now. She is my surrogate¬†Woody. I am going to be so sad when she has to leave tomorrow. I know Quinn will too. He loves her so much. We will see her next week though as she has to be in Newport for a work trip.

This morning Papa Jim sent me a picture. It was of Liam and his first Salmon that he caught. They went out fishing on Papa’s boat early this morning. What a great way to start off my day. He looked so happy and proud of his fish. I was sad that I wasn’t there to see it, but I am so thankful for the happiness that I saw in his eyes today in that picture. He will remember that for the rest of his life.

O.K. baby. I’m going to try to get some sleep. I didn’t fall asleep until 4 a.m. last night and I promised Macy I would try to get to sleep earlier tonight. Quinn is snuggled up tightly in between the two of us. I will kiss him goodnight for you. I miss you so much. Thank you for the love and laughter today. Thank you for Macy. I would have never found her if it wasn’t for you. Your little gifts are everywhere. Sweet dreams my gorgeous boy. I hope you are safe. I love you, Ronan.

xoxo