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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12 Comments

  1. i’ve got nothing left to say, apart from FUCK YOU CANCER. my heart bleeds for you all.

    Reply
  2. Maya.
    I cried so hard while reading this.
    What the fuck is wrong with this world?
    Why the fuck to Kids get fucking cancer and just die? This is so so wrong and my heart will forever be broken that Ronan, Teddy and countless other Kids are taken from this world by this asshole called Neuroblastoma.
    I’m in this fight with you, Maya. I spread the RoLove. I donate.
    And I will continue to do this.
    You changed my life forever. You made me a better person. You made me grateful person.
    There is no answer for why Ronan and Teddy had to die. But I know that you will change the face of this disease. You are just so strong and amazing.
    I admire you, Maya.
    Today, I listened to “Be still” by The Killers and I had to think of you and Ro.
    Love forever and always,
    Antonia

    “Be still
    Wild and young
    Long may your innocence reign
    Like shells on the shore
    And may your limits be unknown
    And may your efforts be your own
    If you ever feel you can’t take it anymore

    Don’t break character
    You’ve got a lot of heart
    Is this real or just a dream?
    Rise up like the sun
    Labor till the work is done”

    FUCK YOU CANCER

    Reply
  3. https://petitions.whitehouse.gov/petition/find-cure-little-known-childhood-cancer-killing-kids-we-need-cure-neuroblastoma-now/wBNrFDtX

    Hi Maya, I signed the above petition. Don’t know if it will help, but its worth a shot! Sending you love and respect. Fuck you cancer. xoxoxo

    Reply
  4. MELISSA NAUSS

     /  January 8, 2013

    https://petitions.whitehouse.gov/

    I am not sure the ins and outs but maybe this could be a first step in getting your voice heard by the President?

    Reply
  5. littlebitlaura

     /  January 8, 2013

    I sobbed reading this at my desk at work. I didn’t want anyone to see me as i’m at work but I also half wanted someone to see me so I could ask them why these kids have to keep dying and why everyone isn’t so upset about it.
    I don’t understand how the numbers of 7 kids per day isn’t enough for major change to do something.
    I am constantly amazed by you. Your integrity in your writing is amazing — yet we are able to see right inside you and wherever you are. This weekend I was thinking of Teddy and his service and it was nice to get a glimpse inside…though even though I didn’t know him at all — I watched his story and hoped for another outcome. I know it had to be the hardest thing to do but I know you give other families so much strength…and to your readers you help us to know what is the right thing to do in these situations. You make it seem so common sense…but I have heard so many people utter the stupid angel wings stuff enough to know it’s not common sense. Why do people want to fit childhood death into some nice neat category that makes sense when it doesn’t. I really don’t get it.

    Reply
  6. Kim Ortega

     /  January 8, 2013

    I have an idea on how we can capture the worlds attention but it is pretty brutal. I have a parent whose son Max was murdered by childhood cancer! The family is very verbal and speaks the truth as do you. Let me know if you want to chat. This family has raw video footage of their son dying and the father is waiting for the right time to release it. He’s willing to do it if that is what it will take for the world to see how fucked up this is for these kids. I can’t sleep myself, and I DO NOT have a child with cancer. I am just someone who was introduced into the world of childhood cancer by accident and I chose not to turn the other cheek! Let me know if you want me to put you on touch with this family. I actually drive up north in a road trip by myself to spend Christmas break with them and I HATE to drive. I love them with all my heart and it is because of their son asking for 2 bucks did I realize underfunded childhood cancer research is. To me what is happening to our future leaders is a disgrace and child abuse. We as adults are suppose to protect our babies and then something like this happens and it is like a guessing game. It’s not fair!

    With much Love and respect

    Kim Ortega

    Founder of: http://www.theblanketfairy.com

    Reply
  7. Kim Ortega

     /  January 8, 2013

    I am so sorry but I felt the need to explain how the video came about. It was not something they intended on capturing. They had two cameras pointed at his bed because Max would try to get up on his own and he would fall. So it was just something they had on to be able to keep an eye in him at night. It just happened to be on when the moment happened. It shows the parents backs and the screams from Max’s sister when she heard her brother was gone. I haven’t seen it, dad has told me about it.

    Thank you for your time

    Kim Ortega http://www.theblanketfairy.com

    Cell: 623-975-3102

    Reply
  8. Chelsea

     /  January 8, 2013

    Your inner strength continues to astound me, though I know it is in part fueled by Ro.
    I completely agree with you about getting more big wigs involved. No one could look at Ronan’s and Teddy’s faces and then turn their backs on this fight. I hope it doesn’t take someone famous losing their child to this monster to change things. I don’t think so, because I know you can change this world :)

    Reply
  9. Glenda

     /  January 8, 2013

    RoMama,
    So glad you had Macy by your side.
    I signed your petition.
    Mayasmafia!!!
    Fucancer
    Always rolove
    XO

    Reply
  10. Katie A.

     /  January 8, 2013

    Hope. That’s exactly what you’re giving these families & innocent babies. They take one look at your strength and determindness & they know you can do it! You are the Rock star providing hope, but please remember how large your backing is… We ARE still reading? We DO cry & sometimes think “if I don’t read it, maybe it won’t be true!” but we keep on reading! For you Maya!

    Reply
  11. I try so hard to read this objectively without emotions… It’s impossible. You expose your deep raw emotions so clearly! I still have my babies… Well, 3 out of 4… (One a miscarriage) however, my youngest being so disabled and disfigured as he is I fear I will lose him someday… Or one of my other two… I can only tell you that you are exactly right about people becoming angels. It’s not reality. God would Not do that to us. It’s totally what his enemy wants us all to think. I can tell you that if you say one prayer to God to actually help you find the truth he will let himself be found. He will answer your prayer and will give you a measure of peace in your torment to have hope. A hope that you can not imagine right not but is so real. It’s the only thing that keeps me going every second of every minute of every hour of every day. It doesn’t remove the pain! But the peace is priceless. I love how you really put yourself out there for others. I’m glad you also have a support group. But even if you don’t believe in god… Just say one prayer to him and ask Him to prove that he really does exist and what is the meaning of this. I wish you peace my dear. I wish you happiness and life. But life also with Ro. And an end to cancer and all diseases as God promises.

    Reply

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  • Instagram is my BFF

    Sweet dreams, little ones. #poppy #ronan #fucancer #thisroomisrad #sedona #nightynight Had to bring along this babe, too. Poppy's sissy. Can't leave home without her. @knjoy #poppy #ronan #fucancer #poppyroo #slumbersissys #sedona #nightynight I'm thinking everything that happened last night was a sign that I need to slow down a bit. I've been running on empty lately due to not sleeping/stress/anxiety/and always due to missing my Ro so much. This may not be New York, but I think it's where I need to be right now to take a little time out. Thankful for this quiet little break. #ronan #fucancer #sedona #ineedthequiet #slowdona #shhhhhh #nightynight @knjoy @jcaccia
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