The election is over! Now, we can focus on turning the White House Gold for September and save some kids!

Ronan. I am having a hard time breathing. I can’t tell if it’s grief that is trying to suffocate me or Poppy. Either way it is making this life without you, harder than normal. I didn’t know that was possible. I spent the weekend at home, doing normal things with your daddy and brothers. The kinds of things we would have been doing, if you were still here. The things I have the hardest time doing now in life. Those simple easy things in life that I used to love so much but now I feel as doing them is harder than running a marathon. Without training. Liam was still a little under the weather. I tended to him and we went to bed pretty early on Saturday. It’s all I can do to make it to 9:00 p.m. without passing out. This growing a baby business is a lot of work. One that I am not a huge fan of. I never have been. The outcome is of course so worth it, but I have never been one of those women who enjoys pregnancy. It feels like a prison. I am trying to stay positive, but it’s hard to all of a sudden feel like you are just stuck in quicksand and there is nothing you can do to get out of it. Before I was pregnant, I had so many physical outlets that kept me sane. I could blow off steam so well with an easy breezy 8 mile run. Now I am panting at climbing a flight of stairs. So mentally and physically I am having a hard time getting out all of my grief in the ways in which I would before which may be another reason for my feeling of constant suffocation. I’ve been throwing myself into working on things for your foundation. That is saving my sanity a little bit I suppose. It is saving the shred of sanity that I have left.

Last night we had tickets to see my boyfriend, Eddie Vedder in concert. One of our little lovies, somehow got 6 front row seats where I got to sit about 10 feet away from Eddie as he gazed into my eyes and sang to me the entire night. That might be exaggerating a little bit but an over active imagination is healthy. He played our favorites. I was not the only one with tears streaming down my face as he sang our song, “Just Breathe.” I think everyone that was there with us, had them streaming down their cheeks too. I tried to fight it, but eventually the lump in my throat became too big and the tears came next. Buckets of them. I wiped them away and pictured you running up on the stage as Eddie sang his song, only the way he can. One that makes you get completely lost in another world. I, as always, was lost in the little world of yours. It’s my favorite place to be. I know Eddie had some Ronan ESP going on as next to last song was the one and only Neil Young’s, “Keep on Rocking in the Free World.” You’re telling me that was a coincidence? I know it was not. It was you working your magic in the ways that you always do. My entire body ached for you and I had flashbacks to the way you used to dance to that song. Thanks, Eddie V for playing it just for Ro last night. I know you did that for him. I could not have thought of a better way to end the night, then with that.

Today, I woke up bright and early. For going to bed so late last night, I woke up before the sun came up. I tossed and turned for about an hour before finally getting up. I had nothing of real importance to do today, but I was restless anyway. I ran some errands and went to the office. I worked through much of the afternoon on some foundation things and had about a half an hour phone interview. This one was hard for some reason. I forget what question it was exactly that I was trying to answer, but I know I had to stop myself and apologize for the sobbing that was taking place on my end of the phone. I think I remember telling the lady on the other end of the phone something about my last words to you and how I told you how sorry I was over and over again. She asked me what I was sorry about. I told her how I promised you I would save you and get you better and the fact that I didn’t or couldn’t will make me sorry for  the rest of my life. She asked if I thought you knew that you were dying. I think about that question a lot. I told her that I did not think that you did. How some of your last words to me were, “I don’t want anymore sleepy medicine.” I told her how you had to be put under anesthesia a lot and how I think you thought you were just going to sleep, but you would wake up again. I think about this so much in my head, all the time. I wonder if I should have told you that you were going to sleep forever. I didn’t. I don’t know if I should have or not. I’m so sorry you are sleeping forever and won’t ever wake up. I will forever have post traumatic stress over this. No mama should have to kiss her babies lips one last time and to be expected to live a life without kissing them again. Being a parent to a dead child is the hardest job in the world. Much harder than being the parent to kids who are alive and well. Being the parent to a dead child is the hardest kind of parent to be. I don’t think anybody in the outside world realizes this. It’s a truth I never thought I would know. It’s a truth that I will forever wish I didn’t know.

I had a board meeting last night at our new office. All of the girls were so excited. It was so nice to be able to have a space to go, that was not our own house. Our board meeting was long. A good 4 hours last night but we got a lot done as we always do. I woke up this morning with a big to do list. I got a lot of it done but by noon I knew I had reached my limit for the day. The little sleep I got last night combined with a raging headache led me to driving home and crawling in bed for a few hours. I took about a half an hour power nap but then had to get up to get some things done. Your daddy picked up your brothers from school and we all went out to grab a bite to eat as the cooking was just not happening tonight. I find myself sitting back and listening to your daddy a lot and the way he talks to your brothers and explains so much about the world to them. Once again, that bittersweet word will be used again because it is so bittersweet to hear the things they are learning and knowing you should be here, learning them, too. Tonight at dinner your daddy talked about everything from Shakespeare to the election. I watched them soak it all up like little sponges. They are so lucky to have a daddy like yours. Tonight, sitting at one of our favorite restaurants, I felt pretty lucky. Not every child grows up with a daddy like yours. So I felt lucky for that. Your brothers are amazing little boys and I know a big part of this is due to the strong male figure they have in their life. They are happy, loved, and have been through the worst, only to watch as we have survived it all. I feel like a bit of their self-confidence and security is coming back. I know this could have shaped them either direction. I am thankful that our situation has only seemed to make them stronger and have a love for our family  that is so strong because they understand how precious it is. Such hard lessons for young boys but I know this will make them stronger men. Of course you know I would rather have you here and not have to have them “learn,” any of this. I am just doing my best to be grateful for the things I have that are tangible to me, like your brothers brave little hearts.

I gotta go little man. Lots to do, always for you. I miss you. I love you. I hope you are safe. Sweet dreams.


P.S. I am not going to get into politics on here but I am so glad the election is over. I took Poppy to vote yesterday and we as a family had such fun last night watching the polls. It was a good night. I am so glad we can now focus on turning that White House Gold for September. I have faith that our President will do the right thing and make this happen. There are too many babes dying. A change has to come. I am thankful for President Obama and the Creating Hope Act. It’s time to take this to the next level and with all of you on our side, I know this can happen! Love you all, so much!

36 thoughts on “The election is over! Now, we can focus on turning the White House Gold for September and save some kids!”

  1. Maya!!
    Check out Obama’s Acceptance Speech from last night!! He spoke extensively (considering the platform and what he was doing) about Childhood Cancer and about how we need hope and we need to eradicate cancer and help children feel better!!! It is definitely on the top of his mind and a large priority for him!! The Whitehouse WILL be Gold next September – I just KNOW it!!!!!!

  2. Excerpt from the Obama acceptance speech
    (full transcript at ::
    And I saw just the other day, in Mentor, Ohio, where a father told the story of his 8-year-old daughter, whose long battle with leukemia nearly cost their family everything had it not been for health care reform passing just a few months before the insurance company was about to stop paying for her care.


    I had an opportunity to not just talk to the father, but meet this incredible daughter of his. And when he spoke to the crowd listening to that father’s story, every parent in that room had tears in their eyes, because we knew that little girl could be our own.

    And I know that every American wants her future to be just as bright. That’s who we are. That’s the country I’m so proud to lead as your president.


    OBAMA: And tonight, despite all the hardship we’ve been through, despite all the frustrations of Washington, I’ve never been more hopeful about our future.

  3. How can we help light up the White House, just let me know. I felt the same as you, pregnancy totally sucks, but SO worth it. Can’t wait to see pictures of Poppy with her big brothers, she is going to be so loved and spoiled!

  4. It takes strong citizens who make their voices heard. And strong political leaders to hear our voices, and use their platforms to spread the message. I’m genuinely happy our President was re-elected and have faith he will do so good for this country over the next 4 years. People like him and you and all of your blog readers can do so much for the causes they believe in. Keep at it, and it will happen. xx

  5. You are so brave- Thanks once agin for putting things into perspective. I am sure Ronan was dreaming of his Mama when he feel asleep that final time-your love is all he feels now…

  6. I had to stop running with my first pregnancy because I would get sharp pains, someone told me to do prenatal yoga, or just a normal yoga DVD. I was so not into it, not really my thing, but for whatever reason I tried it (and hated it). She forced me to try it once a day for a month and then quit if I still hated it. I loved it by the end! It was such a release emotionally (and physically, because I felt like a whale by then hahaha) for me. I think you should at least give it a shot so you don’t totally explode. I also started walking best I could. I know you’ve been pregnant at least 3 times now, so you know crap, but just thought I’d tell you that!

  7. Always thinking of you Maya;) Ronan is watching over all of you…he is everywhere you are..always by your side. Lidia xoxo

  8. It is stormy and rainy and cold here in NYC and you would fucking love it. Watching the snow/rain right now and thinking of you, Ronan and your family. xoxo

  9. The Creating Hope Act is a step in the right direction, with incentives to shorten the review time for regular drugs intended for high volume to companies that also develop products that are focused on children (especially childhood cancer), but I believe in a layered approach, and it needs to be paired with more than the current 4% of the funding going to combat pediatric cancer.

    I would suggest that the government does a cost-match program with the pharmaceutical companies that invest their internal research and development dollars aimed specifically at those types of treatments. Leveraging both will at least double the funding and would provide a much stronger incentive. Perhaps couple that with an exclusive rights agreement for a year or two to help justify the investment.

    As far as getting the White House to turn Gold next year, please use those that follow your blog and have emotionally connected with how passionate and determined you are to keeping your promise to Ronan to always fight until the survival rates and hopefully a cure that doesn’t include destroying the children’s bodies can be found. Letter campaigns to the White House or to various members of the Congress, should be organized and implemented.

    You are right to think that Liam and Quinn are lucky to have Woody as their father and strong male role-model… but they are at least equally as lucky to have you as their mother, and so will Poppy. I know that you attribute everything spicy and good to Ronan, and I agree, but I think that it is the connection between the two of you that really is where the magic comes from.

    I am not afraid to admit that I am a Ronan groupie and that he has touched me with his laughter, piercing blue eyes and infectious smile. I will leave you with this Robert Frost Poem that I think is appropriate for this current post:

    Nothing Gold Can Stay

    Nature’s first green is gold,
    Her hardest hue to hold.
    Her early leaf’s a flower;
    But only so an hour.
    Then leaf subsides to leaf,
    So Eden sank to grief,
    So dawn goes down to day
    Nothing gold can stay.

    I know, pretty cheesy, but that is just me 🙂

  10. Dear Maya,

    I know that telling you not to torture yourself will not stop you, but you were put into the worst situation anyone could ever go through and you did the absolute best you possibly could. You loved him so much and you didn’t want him to be scared. You took on the pain of asking yourself these questions so that he could just go to sleep.


  11. You did the right thing not telling Ro he would never wake up. That would’ve been so scary, I’m sure he went out peacefully. No one should ever have to go through what you’re going through. I’ll always remember to wear gold and spread the word of childhood cancer, it’s just so fucking unfair. God bless you Maya, you’re doing so much good in this world!

  12. I’m sure in your mind you constantly think you should have done this or that differently. But ultimately, you made the best choices you could with the knowledge you had. You couldn’t possibly have caught Ronan’s cancer earlier because his only symptom was a droopy eye, at Stage 4! Once diagnosed, you and Woody did research and read medical literature, seeking out the best physicians and clinical trials. You traveled over the country consulting different medical experts. You kept Ronan happy and comfortable as you could while he was being treated. By end of Stage 4, there was not much else that you (or any doctor) could have done. You made the right decision not telling him he was dying (can a 3 year old really understand the concept of dying?). Letting him get sleepier and sleepier in your arms until he never woke up was the least cruel thing to do.

    As for Obama: while I’m not a huge fan of his, much respect for mentioning Pediatric Cancer during his speech. Next year the White House will be lit gold for September. Now if we could only get power/heat back in NY I will be very happy with him lol 😀

  13. i guess ronan did not understand what was really going on but he sure had a really loving mom to stand by him and make he happy for the little time he had lift you did a good job and still doing a good job oxoxoxoxoxo

  14. If only they spent all that campaigning money on saving lives instead… well I don’t know much about politics, I’m just glad the election is over so we can move on to more important things. I’m glad you guys had a good time last night. September, I will paint that White House gold by myself if I have to. Hopefully I don’t.
    Lots of love ❤ Always in my heart.

  15. Watching Taylor Swift debut Ronan quickly gained my attention. I stayed up most of the night reading your blog and looking more into Ronan’s story. I quickly spread the word the following day, and had many people drawn to your story in no time. I’ve always had a passion for kids and they always cease to amaze me every day. I don’t have children but always find myself wondering why children have to suffer like this. I have a blog that is mainly humor, but you have inspired me to write about childhood cancer through my perspective hoping to raise awareness to my readers. I’ve been getting feedback and the word is spreading! I’m sure you hear this all the time, but you really are doing an amazing job of raising childhood cancer awareness.

  16. Maya,
    I think every mama would go over and over and over again the last moments with their child. Did I say the right thing, did I hold them enough, was the medication right…? Hell, no one should ever be in that place, but I know that you accompanied Ronan through his last days with total love and devotion and that is the best that anyone can do. If I were to die, I would want to come back as your child. I don’t even know if I believe in reincarnation, but if it happens, that is where I would want to be. You are the best mom in the world. Fuck cancer, and
    Take care.
    We are all rooting for Poppy and for you and for health and love. And for Ronan’s spirit and for all of those children who will be diagnosed with cancer. You have been doing amazing things. Keep on keeping on.

  17. Hello Maya, my name is Jeanette. Ive been reading your blogs and get updates when you post new ones. I came across the song ‘Ronan’ one night and instantly broke down. I knew I had to read your blogs.
    My sister recently lost her baby at 5mo pregnant. She has been trying to get pregnant for a long time and had lost 3 others at 10 weeks. We all thought this time was it, she was finally going to have the baby she has so desperately been longing for. I just want you to know, I told her about your blog. I think for whatever reason I was suppose to tell her about it. While the situation may not be the same, the anguish is, the doubts, the frustration, the anger. All the feelings that come from such an unimaginable loss, the blog will give her something to connect with, maybe a way of trying to heal knowing shes not alone with her emotions.
    I just want you to know how many hearts you and Ronan have touched. Its incredible. I think you are so amazing and my heart aches for your loss. Thank you for what you have done and continue to do, the world needs more people like you.

  18. PAINT THE WHITE HOUSE GOLD!! What can we do? I seriously think this is a great way to spread the importance of childhood cancer. I’m sure with the help of everyone’s life you and little Ronan inspired we can make a difference!

  19. You really got me tonight. I can feel Ronan in your words- the song, the dancing to Neil Young- lost in his little world, your favorite place to be… I can feel the void and as usual, I wish there were something I could do to fill it. You are doing everything right. EVERYTHING. And believe me, you sparing him of knowing he was going to sleep forever, was the best gift you could give to him at that time. No child should feel the finality of death in any way. They are such blissful, innocent, precious beings- we should all be so lucky to forever view life through the eyes of a child. I’m so thankful that you made that decision and he was able to leave with his innocence. In fact, I take comfort in knowing in my heart, that Ronan thought he was simply closing his eyes and slipping into one of his sleepy naps. And he’s never left- to him, he’s still with you- he shows you all the time- I just know he’s happy and his little spirit dances with you every moment of the day. It’s just hard for a person to see this when they are missing the physical presence, which is unimaginable to me as a mother. Oh, the heartache you must feel- the tears I have cried for you and your loss- it is the ultimate pain. I just know he’s with you. I’m so proud of you for using your energy and grief so wisely. Thinking of you and sending good vibes. xxx

  20. Maya, reading your blog tonight really got to me once again. Hearing about Ronan going to sleep forever. Doesn’t just make me sad, makes me mad as hell!! Tonight after reading your blog I wrote my first letter to our president thanking him for signing the creating hope act and asking him to turn the White House gold in September!! I mentioned Ronan, was thinking it would be cool if all of us RoLovers wrote him asking him to do this and mentioned Ronan while doing so. I was surprised how easy it was to email the president!! I believe there’s power in numbers!! Not to mentioned this is one tough group we have here:) I’m so sorry you’re going through this Maya!! I wished there was no need for me to fight with you, but there is and I’m here!! Goodnight:)

    1. You can also send tweets to the Obama admin/White House to twitter about turning the white house gold or the ronan thompson foundation. Then if they re-tweet I bet a shit ton of people will see it and start paying attention.

  21. It broke my heart even more reading that Ro didn’t know he would never wake up. I cant even imagine what you have went through, the worst thing possible and you are doing an amazing job at spreading the word of childhood cancer! I know you are going to make a huge difference because of Ro. I know that its because of you that i know about childhood cancer and why i spread the word! Keep it up! It breaks my heart that you lost that beautiful boy, but keep looking at the postive its ok to feel the way you do! I know i’d feel the exact same way if i lost my little man. STAY STRONG!

  22. I have to clarify myself regarding my statement about being “lucky” to forever view life with the eyes of a child- I didn’t mean by experiencing death to achieve that and I hope that if anyone reads this, they understand that I what I meant was, it would be great if we could all view life through the eyes of a child every day of our lives, instead of knowing how harsh it is— especially where it concerns cancer, and the horrendous outcome in so many cases. These beautiful children deserve to be spared of the reality that you and all grieving parents have had to face throughout the entire diagnosis/treatment, etc. The constant nagging questions of life and death, where every day, EVERYTHING is at stake and you are truly battling- I can’t imagine. As I said, it is the ultimate pain- I can’t think of anything more painful. I would rather be tortured slowly to death than watch my child suffer as you have and I know I’m not alone there. My heart aches for you all.

  23. Hi Maya. I have read your entire blog and have fallen in love with Ronan, you and your family. You are AMAZING and I cannot believe all that you have had to go through. It is the most unfair thing a parent could endure. My heart aches for you. I think about you and your family often, wishing I could offer something to you. I live in Texas and have forever had a heart for children with cancer. I went to school to be a child life specialist. Awareness has to be raised for childhood cancer! You have done incredible things, Maya, all because of that sweet beautiful Ronan. I know I am not local, but if there is ANYTHING I can do to help bring awareness to Ronan’s foundation, etc. PLEASE let me know. I would love that so much. You are a special gift and I hope you know you have SO INSANELY many people behind you. I will continue to spread the word about Ronan’s foundation and offer as much donations as possible. Please let me know if there is anything else I can do, small or big… You have impacted my life, as I’m sure millions of others. You are loved from Texas!

    And hang in there with the yuckiness of pregnancy… Poppy just needs a little bit longer to cook 😉 She is going to be beautiful!

    Hugs to you all!

  24. Maya,

    I was one of those mothers. Wishing for the peace and quite for 5 minutes. Wanting the boys not to argue one more time. Cursing the toys left around the house and the sticky fingers on my clean walls. Then I read your story. The story of the love of a mom and a dad. Who with strength and love gave their son the best they could. I am selfish I hope to never know your pain. And yet I can sit here and read your story and cry for a little boy I did not know and for a family that did not deserve the hand that was dealt. I would wonder too. Who would be keeping my baby safe? And all of the things that run through your mind. I have not faced the whore you call cancer with any of my children.We face the fuckwad of Autism instead. But I can tell you that out of everyone that I have ever met. Anyone that has spoken to me I didn’t get how lucky I was until you. Thank you for that. Because of you I worry less about my house being perfect and more about the smile and the laughter. Because of you, I use my time wisely.

    My daughter is expecting my first grandchild. I am excited but sad. I lost my own Mother last year on November 12th to the fucking cancer that stole from you.

    You have given childhood cancer a voice that it has never had! Keep screaming, keep going one second at a time! And there will be many hands along the way. You have your Ro on your side to guide you.


  25. I have never left a comment. I have been reading your blog, I HATE CHILDHOOD CANCER. I HATE ANYTHING THAT KILLS CHILDREN. Watching children suffer is incredibly fucked up. I think of you and the pain you live with often. I am spreading your word. I can not wait to see the White House become the GOLD house next September. Keep up the hardwork both for the foundation and for your boys and Poppy. ❤

  26. I’ve been reading your posts. Being a mother of 3 healthy boys, I can’t imagine your pain. My girlfriend’s husband works with a family whose 18 month old baby was just diagnosed with stage 3 neuroblastoma. She is suffering so so much. Please send some Ro “mojo” her way…she’s in a great hospital (shands at UF in Gainesville fl) but nobody’s baby needs to endure such a horrid disease. Her Facebook page is Help Bella Fight. You are an amazingly strong momma, Maya…even if you don’t see it yourself.

  27. Hi Maya,

    I’ve been reading your blog for a while now and I have contemplated writing you many times, but I always end up back at the conclusion that there is nothing I could say that would help or that you haven’t heard before. The only thing I have to even begin to imagine what you’re going through is thinking about how much my mom loves me. My mom has always called me the shining light in her life. My mom’s whole life has been devoted to my brother and me, and she would give her life for us as I know you would have done for Ronan. I can’t begin to imagine how you feel or what you’re going through, but I can imagine how much love Ronan felt from you. I can imagine that he knew you would give him everything you had and more, and that you loved him more than life itself. Because I feel that from my mom every second that I’m with her.

    I know that it isn’t much, but I wanted to let you know that reading your blog has caused me to rethink how I prioritize my life. I spend more time with my family, and enjoy every second that I have with the ones that I love.

    But the real reason I finally decided to write you was because I wanted to share something with you. I am not sure if you are aware of this or not, but there is currently a petition open to the Obama Administration urging them to find a cure for childhood cancer. It doesn’t have very many signatures right now, and it needs to get 25,000 signatures by December 7th for it to get a response. I figured that you might be interested in promoting it in your blog so that all of the readers know that they could help fight childhood cancer by simply signing their names. Here is the link to the petition:

    I hope that things are going as well as they can for you, and I know that it is people like you, fighters, that will make the difference and cause the change which leads to the cure.



  28. Im so sarry maya you lost ronan I know Ronan miss you and he knows you miss him and he wish he could be a live and to be with you I am sarry you lost a battle of childhood. Cancer IHATE YOU CANCER I love you Ronan very much ❤

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