“A little fishy just told me, just keep swimming, just keep swimming,” Talia Joy Castellano

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Ronan. I got though the 4th of July alright. Mostly just by being distracted which is the only thing that ever seems to get me through anything. I went through the motions and tried to be as “present” as I possibly could. This means playing croquet without you, baseball without you, watching fireworks without you, etc… Macy is still here and that always helps so much with everything. I only had one little sob fest melt down in front of a few people. I couldn’t help it. I was watching one of our family members, hold your Poppy sister for the first time. I don’t know her at all as she is related to us through marriage so this was the first time I had met her. She is young, sweet, and also a bereaved mom. Not too long ago, she lost her first baby girl to still birth. I was surprised she wanted to hold Poppy at all and honestly felt a little guilty about her having to be around a new baby at all. She scooped her up in her arms and just sat and held her while she smiled and cooed at her. Your Uncle Shawn was right there and said, “Do you guys have any kids?” She quickly said, “No, not yet,” while she fumbled with her words a bit. I thought to myself, “Yes you do” but I didn’t say it out loud. It’s not up to me to decide how one talks about their dead babies. I quickly looked up at her and said, “I’m sorry about your baby girl.” She said, “It’s o.k. I’m sorry about Ronan.” That’s all it took and there was nothing I could do but let the tears roll down my cheeks while I helplessly looked for someone, anyone, to wipe them away. I was mostly just looking for you. I cried for her and me and for this fucked up club that we are in that I wouldn’t wish on my worst enemy. I pulled myself together within a few minutes but not before Quinn came bouncing in the room just in time to look at my red, puffy eyes. That kid is always so aware of everything that is going on especially when it comes to my feelings. I sucked it up and got up to play in a little boys vs girls baseball game. Girls won of course:)

We spent the rest of the day together missing your Daddy and you. The 4th of July will never be the same again, much like all of these holidays. This one isn’t as hard for me as the others though and I enjoyed it as much as a mom could who has had the love of her life, ripped from her arms. Your brothers had a great day and at the end of the day the smiles on their faces are what gets me through these retched holidays without you. But it’s hard to watch the entire world celebrate a day when you are in constant pain yourself and also so aware of all the pain in the world as well. For me, the pain consists of all of the bereaved mom, dads and siblings and for all of these kids battling cancer. I now live a life where every single firework seems like an absolute waste of money. Every time a firework went off I thought to myself, “There goes another kids’ life and another parent’s broken heart.” I had a vision of what it would be like if just one year, fireworks didn’t exist on the Fourth of July and instead the money was donated to a childhood cancer charity. Imagine how much good that could do. That would sure make me smile much bigger than watching some lights in the sky. A girl can dream, right Ro?

Things around here have been busy, but in a calm and peaceful way. Poppy is still breastfeeding like mad so it still feels like I am feeding her around the clock. She is still sleeping through the night which I’m so amazed by. She seems to want to make my life as easy as possible; for the moment anyway. I’m sure she’s got some good tricks up her sleeve and I can’t wait to see all she has in store for me.

Ronan. I started this a few days ago and I can’t really concentrate on what I am saying to continue on with this post for a few different reasons. One being that Macy left today and I hated so much seeing her go. Who would have guessed that this girl who came into our life in the middle of your diagnoses, because of you and this blog, would be one of my greatest treasures in life? We won’t see each other for a few months and dropping her off at the airport this morning was just awful. We both cried, parted ways, and I hated every second of it. Macy is the sister I never had and my ray of sunshine that is never blinding to me. We all had the best week with her and I know Macy brings out the version of me, that I used to be. I miss that me and it’s nice to see her once in a while. I do wish I could see her more often, but for the time being I will just enjoy her when I’m in the presence of our Macy girl. Nobody makes me laugh and smile the way she does. I know this is the reason you chose to put her in our life. You always pick the best for me and I am so thankful for that.

The second reason I can’t concentrate is because of a girl named Talia who has been on my mind since I found out about her shortly after losing you. I’ve followed her updates, cheered from the sidelines, admired her bravery and attitude while dealing with the shitty hand she was dealt. Talia was diagnosed with that same mother fucker that killed you. She has been fighting non-stop for 6 years, developed a secondary cancer, but still she held on to that beautiful smile of hers. Once Talia the secondary cancer, I knew what the outcome was going to be, but that didn’t stop me for begging for things to turn out differently for her. I found out via social media today that things aren’t looking so great in terms of Talia getting her “miracle.” I want to scream from the rooftops, “WHY NOT? WHEN IS ENOUGH GOING TO BE ENOUGH? HOW MUCH OF THESE KIDS BLOOD HAS TO BE SHED?” My screaming from the rooftops really just leaves me bloody exhausted and drowning in a pool of my tears on the floor. When is this going to get better? When will these kids get an actual real fighting chance? You didn’t deserve this, Talia doesn’t deserve this, none of these babies, toddlers, kids, deserve this, yet it keeps on happening over and over and over all while people continue to look the other way. Ellen DeGeneres had Talia on her show and I am praying that she will do the right thing and help Talia continue to be a voice for childhood cancer.

I’m sad and scared for her parent’s. I made your brothers say a prayer tonight for Talia which really consisted of us all talking to you, Ronan. We asked you to let Talia just fall asleep the way you did. We asked you to help take away her pain. Liam asked you to help her to get to her happy place where she no longer will be sick. Quinn covered up his face and I watched as his eyes filled with tears and he buried his little head into his pillow. This is our life now. A life full of suffering for not only our own pain, bur for the pain of others as well. I know I will be falling asleep with tears on my pillow not only for you, but for Talia too. It shouldn’t be this way, Ronan and I will forever be sorry for everything.

I’m going to go little man. Your little Poppy is stirring. She must hear my tears and know that I need to snuggle into her. Please take good care of Talia and show her the ropes.

I miss you. I love you. I hope you are safe.

xoxo

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A trip to San Francisco for the saddest reason possible.

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Ronan. I am quite simply emotionally beat. This trip was a lot harder than I had anticipated. I kept telling myself I was going to be fine, that I would be able to hold it together like a champ. For the most part I did, but the few days I was here was full of a lot of tears anyway. Macy picked me up from the airport and I was greeted by my beautiful friend and the wonderful rain. Or your tears as I like to call them. We headed back to her place and had plans to go out to dinner. She had made reservations to take me to dinner for my upcoming birthday. We ended up canceling our reservations due to the fact that I was absolutely wiped and in no way could muster up the energy to leave her cozy place and head into the city for dinner. We ended up grabbing take out instead and dined in our pajamas. It was a very sweet and perfect night with my dear friend.

We woke up the next morning and grabbed some breakfast before Teddy’s services. On the drive over, Macy kept looking at me and asking me if I was going to be alright. I gave her my most confident, “I’m totally fine!” response. We arrived with plenty of time to spare and Macy dropped me off up front so she could go and park. I walked into the synagogue where Teddy’s service was being held. It took me a few minutes before I saw Teddy’s mom, Clarence. As soon as I laid my eyes on her, it was game over. I embraced her for a hug and instantly lost it. I was the one who was supposed to be strong today for her, but here she was being strong for me. She whispered something like there would be plenty of time for tears inside. I tried to pull myself together as much as I could and said something to her but I honestly don’t even remember what. We parted ways and I found myself making my way over to a little table they had set up. It was lit with candles and had some pictures of Teddy, you and another little girl who had lost her battle with Neuroblastoma as well. I swear I felt myself leave my own body as I stared at the little picture of your face in front of me. “Who is that beautiful child,?” I thought to myself. I felt myself get smacked across the face when I cam back to reality only to realize that child in fact, was you. I walked away to find Macy and grabbed onto her so we could go inside to find some seats. Once we sat down, she left me to go and use the restroom. I sat there, alone although the place was filled with people. I felt myself lose all control seeing Teddy’s pictures everywhere and of his favorite things displayed in front of me. As soon as Macy came back, I was a total mess, sobbing hysterically. I looked up at her and spat out through my tears and snot, “I thought I was going to be alright.” She sat down next to me, grabbed my hand and let me cry on her shoulder while her tears fell all over me as well. Drip, drop, drip, drop went Macy’s tears all over my hand. I felt like I was getting a shower. I grabbed the kleenex I had and gave her some. The next couple of hours we pretty much cried non-stop. I don’t think I even shed a tear at your funeral/celebration of life/bullshit because you shouldn’t have died. I remember being so numb to it all. I was not numb on Sunday. If anything, I felt more than I have felt in a very long time. It was a beautiful day for the most fucked up reason of all. I don’t even feel right calling it a beautiful day. A beautiful day because a 3 and a half-year old died of cancer just seems so wrong to even say. It was a fucking fucked up day but due to Teddy and everything he is… beauty shined through anyway.
I had an empty seat next to me the entire time. I kept telling myself you were sitting there with me. That there was a reason in this packed synagogue, that the seat next to me remained empty. I truly believe that in my heart, you were sitting by my side. I kept picturing you holding on to my hand. At one point, I couldn’t take it anymore. I had to get up and get some air. I found myself outside and before I knew it I was comforting a stranger that was sobbing on a bench. A neighbor of Teddy’s I think. She didn’t have any kids of her own but had been through all of this with Teddy and his family. I sat there and held this stranger, telling her how sorry I was. She looked like she was going to pass out so I sat with her until she insisted that she was alright. I went back inside and sat back down by Macy. One of Teddy’s doctors got up to speak. It was the most heart-warming, gut-wrenching thing I have ever listened to. The way he spoke about Teddy and the love he has for him was truly remarkable and something so special. He talked about how when Teddy died, not only did he die, but his future died as well. How Teddy may have grown up to be a physicist curing diseases or a great musician like his dad, but now we will never know because Teddy has no future. He will never have a future and how wrong it is that childhood cancer does not get the attention or the funding that it deserves. I think about this all the time. How I know for a fact that you would have grow up to do something absolutely amazing, but now you will never get the chance and neither will all of these other kids who are being murdered by cancer. Futures of these kids are being thrown away left and right and nobody seems to give a fuck. How is that acceptable? How the fuck do people sleep at night, knowing this? I know that it is now my responsibly to give you the future you were robbed of by making something extraordinary come from your death. It is my job, as your mama to give you the future that you cannot have here living on this earth.
Teddy’s day was truly all about Teddy. There was no talk about Teddy being called home to be with Jesus. There was no talk about Teddy being in a better place. There was no talk about Teddy earning his angel wings. You know I appreciated all of that so much. Angel wings on a kid makes me fucking sick to my stomach. I guarantee no child wants to “earn,” their fucking angel wings. Angel wings should be reserved for the rights of people who have lived a very long life. I can handle angel wings then. Angel wings on a child is just another something our bullshit society created up to make it seem liked the death of a child is a-fucking-o.k. Such bullshit. After Teddy’s day ended, Macy and I gave our hugs goodbye and headed out. My eyes were so blurry from crying so hard that the only way I made it to Macy’s car was by my arm being looped through hers. I was so glad she was there with me. She is the only one I wanted by my side. Macy is not just my dear, sweet, best friend, Ronan. Macy is my sister. Macy is family. I’ve always known this, but Sunday really proved it. She sat there with me, the way she sat at your service and has never left my side. Time and time again, Macy goes above and beyond for me and our family. I am so, so, so, very lucky to have her in our life. I cannot tell you how much of a gift she has been to all of us. I love you, Macy. Thank you for being my everything.
We spent the rest of the night trying to recover from our day. My mind kept going back to Teddy’s mom, dad, and sweet brother Leo. I am heartbroken for them all because I have a good idea of what is to come and it is not pretty. Living a life everyday without your child is the hardest thing on the planet to do. I would give anything for them not to know this pain. I was blown away by the strength they all showed on Teddy’s day. I know that in the end it will be Teddy’s love that will get them through this the exact same way your love is getting us through our own horrific nightmare. It’s the only way one goes on after something like this. The love they have for Teddy and the love he has for them will always be there and will help them through their darkest hours which will never end. Your pain over losing a child never goes away. It will live on with them forever the same way their love for one another does. Pain and love will forever go hand in hand. As Macy and I were driving in the car we had it on some random radio station. You favorite song came on, “Keep on Rocking in the free world,” by Neil Young. I smiled when I heard it as I always do and pictured you dancing around to it. The next song that came on was “Somebody I used to know,” by Goyte. I said to Macy. “Did you hear that?! Ronan’s favorite song and now Teddy’s!” There had been much talk earlier that day about how much Teddy loved that song and used to make everyone at the clinic dance to it as he would play it over and over. I don’t think that was a coincidence, Ro. I think that was your way of telling me you and Teddy are together, riding trains with your light sabers. I’m just sorry it has to be somewhere else and not down here where it should be. We spent the rest of the evening curled up in Macy’s bed watching episodes of, “Girls.” We both were in desperate need of some laughter and knew that one of our favorite shows, would do the trick.
The next day we had a date with Lynne from Lucas studios. It dawned on me that it might be hard to go back there since the last time we were there it was with you, but of course I pushed that aside because once again I thought, I can handle this. Macy drove us and as we pulled up to the parking lot I felt my stomach drop. We parked and both looked at one another. Uh oh. I knew this was not going to be good. Macy’s eyes were full of tears. We were parked in the same spot that you had chased her around with your light saber. I did my best, “Come on! We can do this!” talk as I pushed back my own tears. She said to give her a minute so she could compose herself. I led the way past the little walkway where I could so picture you running and hear your laugh. We made it past the Master Yoda foundation where we posed for countless photos. I took a deep breath and opened the doors to the inside world where I had spent one of the best days of my life with you. We checked in and went over to wait for Lynne.
I sat down and Macy sat down in front of me. I started sobbing.
Me- “I can’t look at you right now. Fuck! Stop looking at me, you’re just making me cry harder!!”
Macy- “You stop looking at me!
Me- “I’m not looking at you! You’re looking at me! Oh my god! We have to pull our shit together! We can’t be hysterical when Lynne gets here!”
Macy- “I don’t know if I can! I can’t stop crying!”
I had your favorite Star Wars guy in my purse because I take him everywhere.
Me- “Here! I brought Captain Rex. Focus on Captain Rex! Deep breaths!”
Macy- “O.k. Captain Rex. Focusing on Captain Rex.”
By the time Lynne got to us we were much more composed. But of course we both ended up wiping away more tears in front of her when we told her that we had been there with you. She could not have been sweeter and said that she had thought we had taken you to the ranch and not the studios when we came for a visit. She then gave me a big hug and told me she was so sorry. I smiled and told her thank you, that we would be alright. We spent the next couple of hours with Lynne, walking in all the little places you ran around and grabbed a bite to eat with her as well. It was hard being there but I was so thankful for getting to spend some time with someone I’ve been wanting to meet for a very long time.
I’m on my way back to Phoenix now. I’m tired. I feel like I’ve been crying for weeks but I also know that it was a release I very much needed. I am so glad I went on this trip to honor that little boy who will remain in my heart, forever. He touched me in such a way, Ronan that I cannot explain. While I was sitting at his service, staring at his pictures I said in my head, “Teddy. I promise to fix this for you, too. I promise I will not stop until things get better.” I won’t break my promise to either of you. Do you know what else I thought, Ronan? I kept thinking If President Obama or some other big wig politicians were sitting in this room, listening to the story about this little boy’s life and all he had to endure, I am quite certain that childhood cancer would be at the top of their priority list. Without a doubt, they would want to fix this problem. How can I make that one happen? Then my head of course went to the most dramatic place possible which was me living in front of the white house, in a tent, with bald headed, beaten up and bloodied baby dolls lining the gates of the White House with IV poles and vomit everywhere. Then I remember Poppy and your brothers. Fuck. I don’t’ think they would do very well, living out of a tent with me. There has got to be another way to make our President listen. I just need to figure out what exactly that looks like.
I’m landing soon. I cried as I left San Francisco. I kept thinking of you and that video I have of your from our trip here with you. “Bye Macy!!!!! See you soon!!!” you squeaked in your little voice.
Goodnight, Ronan. I miss you. I love you. I hope you are safe.
xoxo

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A Golden Night All For You

Ronan. I woke up the morning of The Gold Party, sobbing hysterically. I finally saw you in my dreams. You are never in my dreams. It was horrific and left me pretty shaken up for most of the day. I dreamed the entire night, about watching you die. You were in a hospital. You were so sick, that I couldn’t pick you up. You had bed sores all over your entire body. I kept trying to record your voice on my phone, because I knew I would never hear it again. I woke up and tried to put this dream, behind me. It didn’t happen. I came back into bed, threw myself down and cried for you like I haven’t done in a while. Your daddy stroked my hair and asked me what was wrong. It took me a while, to get the words out, about my dream. You daddy listened and then said, “But he didn’t die in pain. He fell asleep in your arms, peacefully.” I wish I could say that made me feel better, but it only made me miss you more. I hate our reality so much. I wish I would have had that nightmare, and still had you to wake up to. That dream will forever haunt me. I hope one day, I can dream about you the way I know you would want me to. In a way that is beautiful and happy, just like you were. The nightmares are awful, but they don’t hold a candle to life here without you.

I have Macy and my little New York hipster, Rachel in town. They are both staying with us. It makes me so happy, to have them here. You would have loved Rachel so much, Ro. Your brothers do. Your daddy does. So does Macy. She feels like part of our family. I try to think about the good things in my life now, this blog of course being one of them for me, just due to all the beauty that has come out of it. I wouldn’t have Macy or Rachel, without this blog. I cannot imagine my life, without them AND without you. They feel like the sisters I never had, but have always had due to the natural bond and connection we have. I love that Rachel volunteered at Sloan and remembers seeing you there, shooting your guns. She is such a good girl. One that will help us change the world and all of this. We all went to watch your brothers basketball game. Quinn was in giggly heaven. Liam was so focused. I felt so proud. I only wished I would have had you there, sitting on my lap. They won their game, again. Those boys are on fire again and I love to watch the way this sport is building their self-confidence. They look so happy, Ro. I know they miss you so much, but I can see happiness from them which is what I need to see from them. They deserve to be happy as they didn’t do anything to deserve losing you. None of us did.

I spent the rest of the afternoon, laying low as I knew I had a big night ahead of me. I took a little nap and got up around 3:30 to head over to The W Hotel to hang out with Charisma. We got ready in her room together. It was a mellow few hours with my friend that I very much enjoyed. She looked so stunning and I was so thankful that she flew in, to host this event for us. I really just wanted her to come and enjoy herself and I think that she did. She got to spend a lot of time talking to our friends and your daddy which I know she loved. The Gold Party was even better than I could have imagined. I knew it was going to be amazeballs, due to all the hard work everyone has been putting in, but everything about it blew my mind. It felt so much like you, which was so important to me. Nothing stuffy or over the top. The evening was laid back with such a good energy filling up the place. I swear I heard laughter everywhere I turned, which you know for me, is so important. It was packed. I cannot believe all the people who came out to support you. I had people fly in and drive from all over the county. Can you believe that? It made me seriously cry. All for you, Ronan. They all came, for you. I am thankful for all the love that you continue to fill this world with. I am thankful everyday, for the people that see the beauty behind all of this pain and sadness. I am thankful everyday for all the people who are going to help us change this awful world. I got to meet so many sweet faces and listen to their kind words. Thank you to everyone who came, helped, donated, and volunteered. Those busy little bees of ours, are the BEST. I spent the entire evening, trying to get around to as many people as possible. It was not a hard night for me, in spite of the reason behind this party. I do really well in situations that solely revolve around all things you. This night absolutely did. Of course, I would have given anything for this Gold Party to never exist, because you were still here. I go over this all the time in my head. I can’t have my way with that. I can’t magically bring you back. This is the way, by doing things like this, that I get to keep you alive while making a difference for others. This is the way, I get to have you still and share you with everyone else who has been so touched by you, that they want to help us too. That is the most bittersweet gift, Ronan. But it is my gift, from you and I am not going to waste it by sitting back and doing nothing. I will forever celebrate your life, your beauty and our love by continuing to do things like this. I just hope everyone at that party took a second to stop and remember why they were there and what truly matters in life. I don’t want our message to ever get lost. Yes, this is our story, but it is the story of so many others out there who have lost a child to cancer, who will lose a child to cancer, who will have a child diagnosed with cancer, who will have a child survive cancer…. Unfortunately, there is no shortage of stories like ours, out there. Unfortunately, cancer does not discriminate based on age/gender/income/if you are a good person or bad person… This could be anyone’s story. I just hope to make this story, a little better for someone else in the future so less people have an ending like ours. I know this is not the end of our story, Ro. But everything would be so much better if I could do all this, while still having you here, because you had survived. I would still be doing all of this, if you were still here.

You know how I know I had a good time at The Gold Party? Because we didn’t get home until 3 a.m. This pregnant lady, stayed out until 3 a.m.! We all came home, so tired. Macy went and curled up in Quinn’s bed. I came in to snuggle with her and giggle about the nights events. Rachel came in a joined us. It felt like a little slumber party. Rachel was saying how she was so excited to sleep with Liam’s cozy brown blanket, that is seriously the softest blanket in the world. I knew which blanket she was talking about. I almost didn’t say what came out of my mouth next, but if you can’t say these things, in front of people that are like your sisters, then who can you say them in front of? “I have something to tell you about that blanket.” “What?” Rachel and Macy both said. “That’s the blanket that Ronan died on.” It was quiet. Macy grabbed my hand. I grabbed Rachel’s. We sat for a few minutes, saying nothing and just cried. No words were needed. I love that about those two. They always know when words are needed and when they are not. I think it was Macy that  said next that you would have loved the party tonight. And Rachel quickly chirped in, “But then he would have kicked everyone out and screamed how this was HIS party and nobody else’s.” That made us all laugh. We soon went to bed after our laughing and crying. It was 4 a.m. before I got to sleep. I fell asleep a little restless and a lot sad, like I do most nights.

Rachel left last night and Macy left today. I was sad to see them both go. I will see Rachel next week though during my little New York trip. I can’t wait. I am ready for a break from all of this sunshine. Nothing makes me happier than the crisp New York weather. I hope my rain is waiting for me. This is all for tonight, Ro. I’ve been having a Poppy puking party most of the day and I am wiped out. Thank you again to all of my board members for throwing The Gold Party together. Thank you, Charisma for hosting. Thank you, Danny, for DJing. Thank you to everyone who donated or bought auction items, tickets, tables, etc. Thank you to the BEST photographer and friend, Emily Carroll for her photo booth. Thank you to all of our volunteers, The W Hotel, and everyone who supported The Ronan Thompson Foundation. Thank you to all of our friends who came out to celebrate Ronan. You all humble me. I know Ronan is so proud.

Goodnight, babydoll. I miss you. I love you. I hope you are safe.

xxoo

P.S. I have one little thing to say, that has been gnawing at me. I THINK most people that were at The Gold Party, were there for the right reasons. I am sure there are a few JACKASSES, who were not. I heard about a little fight over a certain item that was auctioned off. If what is being said, is true… and somebody was bullied over this item, in the most immature way…I AM SO SORRY to the person who really wanted it, but did not end up getting it. The story that is going around, is pissing me off. I wish I would have been there, to intervene. To know that something so petty happened during a night that should have been full of all things sweet and beautiful, just goes to show there is no shortage of douchebags. Sorry, C. Nobody should be treated that way over a material item. Thank you for walking away.

Here are some pics from the photo booth that night. Enjoy them!

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An Inferno Dark Death Hike that should have resulted in a Heart attack.

Ronan. Someone had a party in your room last night and it was not you. That would have been me and my friend, Ambien that I have not taken for weeks now. It’s funny how just when you think you are making progress with little things like a normal sleep schedule and BAM! Out of nowhere, 10 giant steps back. Where is my natural sleep remedy, your New York Miss Macy when I need her? And why does that girl always relax me so much that I sleep like a baby when she is around? Insomnia strikes again tonight as well. Good times around here.

I had a meeting this morning. I felt like a zombie. I took your brothers with me. They quietly sat at the table with us and ate their breakfast. Not a peep was made. Sometimes they are so good that it makes me want to scream, but I was thankful for it this morning. After my meeting in regards to the Sept. 29th event, I ran your brothers to basketball camp. I went by Dr. JoRo’s office to sit and get some things done. She has been letting me use it while she hasn’t been there. I think I was pretty productive but I ended up crying hysterically when one of my MISS mama friends, popped her head into the room to see how I was doing. I tried to say fine, but the tears that followed told the truth. She came and hugged me and sat with me for a while. She told me about the dream she had of you. She asked if there was anything she could do. I just told her no. That there was nothing, anyone could do. She said she knew. I left there shortly after that as I had to pick up your brothers. We came home and spent the rest of the day, hanging out. I made them lunch and tried to do all the normal things that a normal mom does during the day when she does not have a dead child. It still feels foreign to me to go on with normal day to day things. I would give anything back to go back to our cancer world where all I did was take care of you and your brothers when I could. It is such an unfair world but it is so much less cruel than this. Your daddy came home and I told him I needed to go hiking. He took your brothers to Costco and to play basketball for me. I headed up to Camelback around 6:30 p.m. It was still so bloody hot out. I hiked that mountain as fast as I could. At one point my heart was racing so quickly that I thought to myself, I wonder why my body doesn’t just give out and have a heart attack right here. I wonder if this is what it feels like? I was panting so hard trying to get up the last stretch that I could not even breathe. There was some dude behind me. Ummmm, no way was I letting him beat me. He didn’t. I won the little made up competition in my head. I fell to the ground at the top as I could not even stand. I sat there and tried to get my heart rate to come down. I was dry heaving but due to not eating the entire day, I had nothing to throw up. I know I should have been up walking about but my legs would not let me stand back up. I soaked up the bright pink sunset. It was gorgeous up there. I spent way too long at my church, but that tends to happen to me up there. I could sit for hours and talk to you. It was already dark as I headed back down. Dark on Camelback is not a good or safe thing. The trail is steep, rocky, loose gravel everywhere. I did my best to navigate my way down with the little light that was left shining from the moon. I left my headlamp in the car. I was in a fuck it all mood today so fuck it all is what I did. The headlamp did not stand a chance of making it into your little backpack. I got down, somehow. Guided by you of course. It’s the only way I get through things now. I came home, threw off my drenched clothes and got in the shower. I felt so tired that I was sure tonight was going to be an easy night of sleep. I snuggled up to your daddy. I tried to be peaceful but that did not work. I ended up throwing pillows, tossing and turning only to wake him up from his very peaceful sleep of slumber. I told him I was sorry, I loved him, but had to get out of our room. He said it was alright but I know how much he misses me when I don’t sleep in our bed with him. Maybe I’ll attempt to go back there later.

I found out something from Fernanda today. Something that she didn’t tell me but she should have told me. I am just thankful that it is you, who is watching over her and taking care of her to make sure she is o.k. I know she has been talking to you a lot and asking you to help her with some things. You are being such a good, brave boy by taking good care of her so nothing can happen to her. I need her here, for a very long time. Remember how good of care, she took of us? I won’t ever forget it. Now it’s your turn, to take care of her, o.k. baby boy. I know you always are. Thank you for that.

I’m queasy probably from the way I over did things today. I’m getting sleepy. I think I’ll go and cuddle up to that daddy of yours. Goodnight baby doll. I’m so sorry. I miss you. I love you. I hope you are safe.

xoxo

Screw this day, I’m taking an Ambien. 14 months without you is bullshit.

Ronan. Today is the 9th. 14 months without you. I woke up at 5 a.m. to take Macy to the airport. I hated that she was leaving on the 9th. I came back home and fell back asleep for a bit. I heard the text message on my phone go off. It was Macy. Her flight was canceled and she couldn’t leave to get back to San Francisco, until tonight. I texted her back. I told her that obviously you didn’t want her to leave either, since it was the 9th and you knew I needed her to stay. I went back to the airport to pick her up. We came back home and crashed out in our bed for a bit. I had to get up to take your brothers to basketball camp and I did that while our Macy, slept. I ran some errands. I watched your brothers play basketball. We came home and Macy helped me with the laundry. I looked at her and she could tell I was panicking. I asked her if it was alright if I went Inferno Hiking. She looked at me like I was crazy. It was 115 degrees today. I didn’t care. Please, Macy. I promise I’ll bring water. She said alright. I skipped out of the house. I filled up your Ronan backpack with a few frozen water bottles. I drove to our mountain. I didn’t turn on my headphones. I kept singing in my head some little song about “115 and I don’t care, I don’t care, I don’t care…” It wasn’t a very happy song. I pushed myself up the mountain as fast as I could go. I didn’t allow myself to stop for water until I got to the top. I was dry heaving by the time I got up there. If I would have had anything in my stomach, I would have thrown up everywhere. Good thing I hadn’t eaten all day long. My appetite has been back to not much lately. I can survive off of some string cheese and some fruit these days. I did make Macy and I some of your scrambled eggiess this morning. I ate a bite or two. I really made them, for you.

At the top of the mountain, our bench was too hot to sit on so I didn’t get to stay up there for long like I normally do. I tried to sit down, but my butt got scalded so fast that I quickly learned that when it is 115 outside, a rock made bench is not a good place to sit. I think I almost blacked out for a few seconds. I drank some water. I felt dizzy and thought to myself, “Hmmm. Maybe 115 was not such a good idea. But today is July 9th. It’s a danger day. This is a dangerous thing to do so I will just have to find a way back down the mountain, without passing out.” I managed. I looked for snakes, everywhere. I didn’t see any. I keep waiting for the day, that I get bit by a big rattlesnake. I have a plan of how I know it won’t even hurt because nothing hurts like the pain I live with everyday. I have a plan of calling 911 and telling them where I am, what just happened, and how long would it take for the rattlesnake venom to kill me. Just out of curiosity. I might have to google that one. I got down the mountain, somewhat delirious. I dry heaved again before getting into my car. I got home and took the coldest shower possible. I felt a raging headache coming on. Your brothers were hungry and I had to get Macy to the airport so I dropped them to your daddy and took Macy to catch her plane. She rubbed my back the entire way there. She asked how I was. I told her, “O.k.” She said, “No you are not.” I smiled my fake smile at her. We hugged in the car. We both cried. I got out to help her with her luggage. I grabbed her, held her, and kissed her sweet salty tears that were pouring down her cheeks. I tasted those tears of sadness, pain, loss and love as she loved you like you were her own. Her tears tasted just like mine. I wanted to lick her entire face to make her laugh but I just kissed her tears away instead. “I love you, Mace.” “I love you, too.” she said as I watched her walk away. I’ve been begging her all week to move here. She is our family now. She is the sister I never had but you made sure of it, didn’t you, Ro. You always knew that I wanted a sister so you picked Macy for me. Thank you. She makes everything better when it needs to be and everything sad when it needs to be that too. Everything that Macy brings into our world is always a natural vibe of energy, nothing is ever forced or pushed. She is good as just letting me be and I am good at being myself around her. No need for guards up. No need for fake smiles. That is refreshing for me. She is coming back for your September 29th event. I should know more details about that tomorrow. So, we will save your room for her. I like to lay in here with her too.

I came home with a raging headache. One that I hadn’t felt before. Almost a migraine I guess. Too much sun and the sad memories came flooding in today. I saw us all at the Ryan House. They had taken your body away. We had to go and wake up your brothers. Your daddy grabbed Liam first. I woke Quinn up next. “Is Ronan coming home, too?” He asked me. “No sweetheart. Ronan is gone. He can’t come with us.” Quinn looked up at me with his eyes pouring tears.”Where is Ronan?” “Come with me Quinn, I’ll take you to where he was.” I took Quinn to the bed that you died in. I let him lay in it for a while. He sobbed and sobbed and sobbed. He clung on to your GiGi tighter than I have ever seen him hang on to anything in his life. “Are you ready to go? Daddy and Liam are in the car.” He shook his head. I picked him up and watched as the staff watched us walk out of that place. I wonder what they thought. Did they just think, “Oh so sad, but life goes on?” Do you think they took into consideration how broken and shattered our lives would now be? How nothing will ever be alright or the same again? We rode home in silence. Your car seat was already taken out of the car. I sat where you should have been sitting. The sun was rising. My phone kept ringing. Your Mr. Sparkly Eyes. “When can I come over?” I read his texts. “I’m so sorry. I don’t have words. I need your address.” I don’t think I responded. I got home and pounded about 10 sleeping pills and don’t remember much except for hearing Sparkly leave our house. I called him. “You were sleeping. I didn’t want to wake you.” “No. I’m up. Come back. Where is Ronan? I need him! I need to see him. Is he here?” “Darling, lay back down, I’ll check on you later.” “Fine. Fine. Fine. Everything is fine. I’m laying back down. I need more sleeping pills. Goodbye.” I passed out for much more of the evening. I don’t remember seeing anyone but I know they were around. The only face I wanted to see most was just gone! Just gone, just like that. In the blink of an eye. I have the picture of you. Right before you died. Of you and me. Someday I will post it. I’ve decided that when somebody asks me how you died, I’m going to just come out and say, “Oh, my Ronan was murdered.” I’ll watch as these new strangers become outraged and so angry. Then I’ll say, “He was not only murdered, but he was bullied, beaten and murdered by this asshole called Childhood Cancer. I wonder if the truth about childhood cancer, really came out, how people would really feel. Nope. It’s not just a story about cute bald-headed kids wearing sweet looking hats and being happy heroes. The truth is these kids are getting beaten up, bullied, and murdered over and over, every single day. Maybe if the truth was shown, more people would be so outraged, that they couldn’t look away any longer. Something has to change. You will never hear me say the words, “Ronan is an angel now.” That makes it seems like it is o.k. and it is so no o.k. My child should not have to be an angel. He wasn’t ever one in the life that he lived here, so why would he be one anywhere else? That’s not the Ro I knew for almost 5 years if you count the 9 months I carried him in my stomach. He wasn’t even an angel then. He was my extra spicy monkey who made his own rules and listened to no one. You know what else I remembered today, Ronan. Such a little detail but I remembered that I had a french manicure on my nails the day you died. I have not worn one since and I will never wear one again. I hate french manicures and I know you did too. You always wanted the brightest most sparkly colors on your toes. That’s what I’ve been wearing for you. It makes me smile.

I’m going to go now, baby doll. My headache is almost gone and I need to get some sleep. Remind me to tell you about the dream I had the other night. I’m too tired to talk about it now. I’m sorry, Ronan. I’m sorry I couldn’t save you. I miss you. I love you. I hope you are safe. Sweet dreams, love of my life.

xoxo

<;;

When all else fails, go to a concert. Even when all you want to do, is hide under the covers.

Happy 4th of July, Ro baby. This is our second one, without you. Today was o.k. We didn’t put much pressure on making sure we were doing the traditional celebrating of the 4th of July. Traditional seems funny now, so we just kind of make up our own ways to get through the day. We all slept in. Macy is here and I always sleep better when she is around. She’s sleeping in your room which brings me comfort as well. We all slept in. We woke up and decided to go for Mexican food. It was a rainy day here which you know I loved. It made me smile. I had a little break down 10 second cry fest when I found myself in your closet, with Macy, grabbing sweatshirts as I keep most of my winter things, in with yours. We were smushed together, in your closet, with your little clothes, hats, and shoes surrounding us. “I can’t be in here,” Macy said as tears started to form. I just told her I knew and we grabbed our things and got out of your closet as fast as we could. Your brothers and daddy were waiting for us so there wasn’t much time to let the tears pour that were wanting to so badly. I had to pull it together for everyone despite the fact that all I really wanted to do was curl up in a ball in your closet and not come out for the entire day. I didn’t. We went for Mexican food like we had planned. After that we came home and Macy and I ran out the the grocery store. I know you know how much I used to love to cook. It was one of my favorite things to do. I don’t do it very much anymore. It’s hard for me to concentrate on things and cooking for everyone, while you are dead, makes me sick to my stomach. It’s one of the mental blocks in my head that I just can’t seem to get past. I was determined today to make your daddy and brothers a good meal. I grabbed my Julia Child cookbook and jotted down a recipe. I spent the rest of the afternoon/evening cooking away in our kitchen while I listened to the sounds of Macy’s giggles, Quinn begging to help, while your daddy and Liam played some video game. Your daddy kept saying how good the house smelled but I can honestly tell you, I couldn’t smell a thing. I felt like I was on autopilot mode as all I wanted to do was make it through cooking dinner, without burning a thing due to my brain that forgets to pay attention a lot. Mission complete and all I heard was how good everything turned out. It was bittersweet to spend the day cooking away without you sitting on the counter, to help me the way you used to love to do. I miss that so much.

I started that post a few days ago, little man. Much has happened since then. I had a board meeting. I spent much of the day, cooking away for it as we had it at our house where much of our meetings, take place. Macy is still here. She helped me in the kitchen all day. The meeting was great and really productive. A lot of decisions were made in regards to the event we are having for your on September 29th here at The W Hotel in Scottsdale. I think it is going to be really, really great. Our lovie, Charisma, offered to fly in and host the event for us as we wanted to have a celebrity host. I was so relieved when she offered to do this for me. It means so much to me having her be a part of this just for so many reasons but the biggest one of all being that she really knew you, loved you and continues to be such a strong support system in my life. I am excited about the plans we are putting in place. More on that as we figure them out. I promise to keep you all in the loop:)

Yesterday was a hard day for some reason. I dropped your brothers off at basketball camp and ran some errands with Macy. We stopped at Rita’s for a bit to talk about some things with her and see that little Dragon of hers as well. I played Star Wars with him on the floor and he made me be Master Yoda. You would have liked it. It was too much for Macy to watch so she had to leave the room. Little Dragon went down for a nap and I joined Macy and Rita in the livingroom. I guess I was being quiet. Rita looked at me and said, “Are you going to cry?” I put on my tough face and said, “No. I’m just thinking.” Lies. I had been on the verge of a massive tear fest all day long. We left Rita’s as we had some things to do before our Foster the People concert. I was driving in the car with Macy and it was pretty quiet. We were listening to some C.D. that I had playing. One of my favorite songs came on, “Silver Coin,” by Angus and Julia Stone. Macy said how she had never heard the song before. I told her how it was one of my favorites. We listened and soon my face was covered in the wet, salty tears that I am so familiar with as they sometimes never seems to stop. She looked over at me, didn’t say a word, and just started rubbing my shoulders and held my hand. I knew she was crying too. We pulled over in the Biltmore parking lot and just sat for a good 45 minutes, not talking much at first, but just crying for a long time. We stayed that way until Rita got to our car as we were supposed to meet her for a little girly time, before the concert. Rita looked at me in the car and said, “Why do you always say you are o.k., when you are not?” I just told her, “Because I am never o.k.” The tears continued to fall and the plans that we had, were changed. A new plan of some girly time on a couch at a restaurant happened instead where we sat and talked, laughed, and cried. I was not feeling like going to the concert at all. Rita told me that I didn’t have to go. I told her yes I did. Because if I didn’t go, I would die. She said she knew. She got my metaphor.

We parted ways and all met up at our house. A group of us went to the concert. Me, your Daddy, Macy, Rita, Danielle, Dave, Stacy, Kenny, Carolyn, and Cory. My sadness was still heavy but I was able to let go of it during the night for a bit to get lost in the world that I love and adore so much. Music. My escape. My heart. My happiness. It destroys me that you never got to hear Foster the People as their C.D. came out after you passed away. I know you would have been just as obsessed with them, as I am. I spent the rest of the evening singing and dancing my heart out with the friends that I am so lucky to have. It was just what I needed lift the heaviness that I carry around with me 24 hours a day. It’s morning now. I am hoping today will be a little less sad. I am thinking I see some inferno hiking happening. Macy has been begging to be introduced to it. Today will be a good day as you know that exercise is one of the things that makes me feel better.

I love you, little man. I hope you are safe. I miss you so very much. I’m so very sorry.

xoxo

A never normal world

 

 

 

Ronan. Normal will never be my life again. Quinn woke up this morning. Throwing up. Headache. I look at your daddy. He knows what I am thinking. I send him a text later in the day. “Quinn is still not feeling well. I’m sick to my stomach over this.”  Of course it’s because he has a brain tumor or something. It cannot just be he has a little bug. Your daddy tells me to get him into our Doctor tomorrow. To call the Barrows neurologist that we took him to about 6 months ago for this very same thing. A normal flu will never be my thought process again. My stomach will now always drop over the little sign, symptom, or clue. I will always panic on the inside while remaining calm on the outside as I don’t want to scare your brother. That brother of yours with the worry brain the size of china. That brother of yours who now asks if I am going to die over something like a sinus infection. That brother of yours who looks so much like you, but with grey eyes and darker features. That brother of yours who misses you so much that it brings tears to my eyes when I watch him and the way he is trying to find his way, without you. We are all so broken. Sometimes we do things like all sleep in our room because we don’t want to be apart. So, Quinn sleeps in between your daddy and I, and Liam is happy as a clam on the floor. We did this last night. We do this a lot. We spent so much time apart that it’s almost as if we don’t know how to come back together. Nights like last night make everyone feel a little safer I guess. It still does not make things better. I am still always sad to wake up and not find you here, with us. That will never change.

I went inferno hiking today. 111 degrees it was. I don’t care. I didn’t notice the heat. I took my little friend, Kassie with me. My inferno hiking partner in crime. She’s slightly addicted and I think I might be the one to blame. She is always hiking without me while I am away. It was nice to have her with me today. Sometimes the company is nice as my thoughts like the break from the beating myself up over and over again. After our hike, I came home and took care of Quinn. I also tackled the mounds of laundry and chores that needed to be done around the house. I have a list of about 100 things that I need to do foundation wise and I knew that I would not be able to start them, until the chaos that had invaded our house due to being gone, was handled. Mission complete. I can start on your things tomorrow as my head feels a little more clear and after I take Quinn to the doctor.

Am I being paranoid? Probably. Do I have the luxury of not being anymore? No way. Do I wish I did. Of course. But it will never be this way again. I have your Macy flying in on Tuesday. She will stay with us for about a week. She knows how hard the holidays are for us. She is so good about coming to the rescue when we need her most. We are going to Foster the People on Friday night which I am so excited about. Assuming everything is alright with Quinn. He asked me if he could still go to basketball camp tomorrow. I told him no. I have not told him yet that we will be going to the doctor. Fun stuff. I may need to end this post tonight now. It’s been a long day and I am tired. I wanted to leave you all with something that another Neuroblastoma dad I know wrote. He has a son, Will, who Dr. Sholler has treated for a long time. Will is doing great and is basically living with this disease, all thanks to Dr. Sholler. Please check out his page if you get a second.

http://www.willlacey.com/2012/06/oblivious.html

This is from Will’s dad, below. It makes me sad, frustrated, and confused. Why don’t more people care about these kids? Why is the funding for these kids so broken and overlooked? Who the fuck is in charge because they are doing a shitty job. Is anyone in charge? I pay taxes. A lot of them. I would much rather pay for these kids to have better chances then for some stupid war that is solving nothing. You are telling me we can waste money, to put a man on the fucking moon when thousands of kids are dying every year from the number one disease killer in America. WTF is going on? This happened to me. This can happen to anyone. When are we, as a country, going to stop looking the other way? When it happens to us? Not acceptable. If somebody would have dealt with this, like it need to be dealt with, my Ronan may still be here. The fact that I have to live without him because kids don’t get cancer, therefore, they don’t get the funding for research is the biggest crock of shit I have ever heard in my life. I’m stopping now. I’ll let Will’s dad, take it from here.

Despite what you may think from following along here on this website I do not – in fact – share everything about our life or our family.  There are challenges we face and obstacles to overcome that do not have a home here.  What I do share is about parenting a child with cancer and the extraordinary number of challenges that prevent great doctors from practicing life saving medicine and the absurdity that it falls to the parents of kids with cancer to fund trials.

The system to fund research in this country is broken.

It is broken because it is ruled by grotesque cronyism masked as a peer reviewed grant process that continues to fund the same old research over and over again.  And this is all set against a backdrop of dwindling resources combined with societal apathy about the reality of childhood cancer.

The reality is hard to look at.

It is reinforced by the media’s incorrect portrayal of childhood cancer as a “heroic” struggle involving smiling bald kids enduring harsh treatments and then going on to live normal lives. This is what we need to see – what we want to believe – because the truth is to hard to reconcile.

The truth is that the kids who aren’t killed go on to live anything but ordinary lives and their families – like mine – are broken.

The truth is that kids are killed – over 25,000 over the last decade in the US alone.  Their death and the torture chamber that their families live within is the reality. 

These kids die painfully – often slowly – as their parents sit helpless as they watch their bodies become disfigured and waste away.  They do all they can to try and comfort their child and watch the pain break through the impossibly high doses of medication while their souls are being eviscerated.  

A ragged bloody wound is all that remains of their once whole heart.  
A haunted minefield is all that remains of their memories of their child’s last days, weeks and months.

And still the funding does not come.  

And as these families are pulled down to the bottoms of grief and despair another family is unexpectedly thrust into the machinery that will one day churn them out the other end a broken remnant of what was once a whole entity.  

And on and on it goes as the world remains oblivious.

 

Goodnight, Ronan. I miss you. I love you. I hope you are safe. Goodnight all you lovies of this blog reading world. I just wanted to take a second to say thank you to any of you that donated to my Rissy’s mission trip. She just texted me to tell me that they are now 500 dollars OVER the amount that they were trying to raise. That makes my heart happy. She is leaving tomorrow. Please keep her in your thoughts, prayers, or whatever else it is, that you do. I will be praying to my Ronan for her. Love you all. Sweet dreams.

xoxo

Hello, 3:43 a.m.

 

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

xoxo

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New friends and extra lipgloss

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

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

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

xoxo

It’s been a no lipgloss past few days…

Ronan. What is this life without you, like? It’s like I cannot remember what happiness felt like at all in my life. This pain is so heavy that I cannot remember it any other way. I try so very hard to remember what it felt like, to hold you after I just had you. I want to remember and feel the happiness that I know I felt, but all that does is bring me to tears for remembering bringing you into this world and watching you leave it, go hand in hand. It’s cruelest thing to experience and feel. I am back in that very dark space of feeling like I am buried alive and I don’t know how I am going to find the air to breathe. I know I go here quite a bit. I imagine it’s hard for others to read about and for those closest to me, to watch me go through. I know all of this. Imagine being me, and feeling all of this and living all of this. Imagine being me and thanking your lucky stars, that you are not.

I did a lot of things today, that consisted of doing a lot of nothing at all. Your brothers had a day with their Mimi and Papa. This left me to my own project solo mission Maya. Mission complete. Mission success? Mission failed? I am still here I guess. Mission still standing, but barely breathing is good enough for me. I had a lot of conversations today. Names shall not be revealed. I said a lot of things. I meant them all.

Phone call number one went a little something like this, but not exactly like this. Ring, Ring!!!!!!

I picked up the phone. I rarely do this for anyone. I pick up the phone for about 4 people in my life, consistently. The conversation was long, so here is the short version.

-Maya. I feel like you are not wearing lipgloss. I don’t know what to do.

I peel my matted hair, off of my pillow. Shit. I think I’m so far gone, that I don’t even realize that I have not really worn lipgloss, in about a week. “Shit! I don’t know how to tell you this, but I have not worn lipgloss in a week. OMG. And, you should see my nails. They are chipped, chewed, and they have been like this, for over a week now. DO NOT TELL FERNANDA.”

-What are we going to do, I don’t know what to do. You know I’m calling Dr. Jo, as soon as I get off the phone with you, right?

“Yeah, I know.” I whispered. Now I am crying. I hate crying into the phone when I am trying to explain to somebody, the reasons that I am not going to kill myself.

“You know what I’ve been doing, since I got here? I’ve been being still (besides the marathon but exercise doesn’t count) I’ve been sitting still, like I know I need to do, and it does NOT feel good. If fact, I feel worse than I have felt in a long time. I know this is part of the process, but I don’t think it’s working for me!”

– This sounds like depression. You distract a lot. You are always doing. This is maybe what you need to do?

“Well, if this is what I need to do, then this blows. This does not feel good or healthy to me. I like being busy when I am doing busy things. It may be a distraction, but I think of Ronan in everything that I do. I hurt in everything I do. But the businesses helps me to survive.”

-Please don’t die. Please put on some lipgloss. Have you been showering?

“Yes. But only because I am hygienically OCD. Otherwise, I would not be. I’m going to go now. I need a manicure and I don’t think I’ve eaten in 3 days.”

-That is not good. Go and eat. I love you, little friend. Know that.

“I know.”

I run out the door as fast as my weary body will take me. I need a taco. And some chips and salsa, asap.

I know I cannot come back here, next year. I came here really only for the sake of your brothers. And because this is our one special thing that we do consistently, every year. We’ve been doing this since your brothers were 2 months old. It’s been our family getaway, our time together, our peace and your daddy’s way of working his butt off, so we can do this great family thing, and feel good about this is the reason why, he works 70 hours a week. I don’t know what we will do next year, but it won’t be this. This family tradition is going to have to change, because our family is no longer the same. All I want to do here is sleep and cry and sleep and cry. I have no motivation to do anything at all. After an exhausting day of doing nothing, I got your brothers home and spent a few hours, hanging out with them. They both drifted off to sleep fairly early. This leaves me alone, in the dark, watching them sleep. I pray to you for a long time. I close my eyes. My phone rings. I feel a real smile come across my face when I see who it is, that is calling. I am aware when real smiles happen in my life now. It’s as if you are putting them there. My real smile, makes my heart float. I pick up the phone.

-Lover!!!!!!!! Do I get to see your face tomorrow?” purrs the voice on the other end.

“Hi, Macy. Please tell me you are coming tomorrow. Please. We can’t wait to see you.”

-I can’t wait to see you all! I miss you and the boys so much!!

“It’s all Quinn and Liam have been talking about. I am going to feed you a lot of hummus, coke and candy.” (that’s all we lived off of, last summer)

-I will see you tomorrow! Give Q-dub a squeeze for me, since I know he’s right there.

“Goodnight, Macy. I love you.”

I hang up the phone. Macy will be here tomorrow night. Macy will make everything better for a few days. Macy is the life raft I need right now. I am thankful. I fall asleep with a smile on my face.

Tomorrow is here. Happy New York Miss Macy Day, to me. Today is guaranteed to be a better day. I love you sweet boy. I miss you. I hope you are safe.

xoxo