Thanks for nothing, White House.


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Ronan. When I’m not writing to you on the blog, I feel like a bad mom to you. I’m hard on myself and fuck, I just plain miss this. I cannot keep up with everything that is going on and life seems to running at an outrageous speed. So much has happened and so much is going on that I don’t even know what to address first. First things first, Ronan. I am so overwhelmed with every aspect in my life right now that I feel like a breakdown might be in order, just because I fucking deserve one. I keep telling myself, I have to get through September first, but I truly don’t know if I can wait that long.

So, where to start? The most important thing of course that has been consuming me. It started with that phone call from your Mr. Sparkly Eyes while I was out in the Hampton’s with your Poppy sister. That phone call that I know he did not want to make, for fear of “ruining our trip.” That phone call that left my head spinning, tears falling, sheer panic, and of course where my mind goes to the absolute worst place. That phone call where I was left saying, “What? No. Start over. I cannot process this. Do I need to get on a plane to come home? I love you. Ronan is not going to let anything happen to you.” That phone call that has had me down on my knees every day and night, begging and screaming to you to please DO NOT LET THIS BE STAGE IV FUCKING BULLSHIT CANCER AGAIN. That phone call that left me with my head going to the worst possible places and telling myself I wouldn’t survive this big of a loss, once again. Your daddy watched me as I paced around for days, cried in bed, telling him if anything happens, that this will be the worst thing to happen to me, since losing you. I came home from the Hampton’s, as fast as I could, waited as patiently as I could to get to the hospital and plop a big fat kiss on that old man’s forehead and look into his sparkly eyes. Surgery was done, to remove what was there. Your Sparkly just looked at me and said, “No matter what this is, my book is already written. You know that better than anyone.” I left the hospital, waiting to hear the news that was the only news there could be. I begged and pleaded with you once again in the parking garage. Please, Ronan. Do not let anything take him away. Please, Ronan. Let him be fine. You left him here to watch over me, for you. Do not let him be taken away. A few hours later, I got the news. The cancer had not spread and was confined to just that one area. It had not spread, and now that it was removed, everything was going to be fine.

THANK YOU. THANK YOU. THANK YOU. THANK YOU. THANK YOU. THANK YOU. THANK YOU. THANK YOU. THANK YOU. THANK YOU. THANK YOU.

Proof that you are still here, taking care of me, the best way that you can. By making the one dearest to my heart, o.k. I told him I need at least 30 more years of him here. He promised to help me fuck cancer and I’m not letting him go anywhere other than here, to do that.

While I was on my vacation in the Hampton’s, I got that little email that everyone else got who signed our petition to turn The White House GOLD for just one day in September. To say I am beyond disappointed, is an understatement. I am heartbroken at the way our cancer kids are just brushed aside as if they are a dirty little secret. I had visions of organizing a protest outside the White House. I had visions of the signs I would hold, while bouncing Poppy on my hip. I had visions of all the other angry people, right there with me. I wish so badly that I could make this a reality, because I don’t know what else to do. I’m angry, sad, and feel really let down. We worked SO hard for those signatures and I know all of our supporters did, too. I have had to regroup from that blow and go back to square one. Yes, The White House should be GOLD. But more importantly, our kids deserve more funds from our government. How can we make this happen? Does it start with baby steps while everyday, kids are just being murdered, left and right? How much more blood needs to be shed? The world of childhood cancer deserves so much more.  Are people really not aware or are we just plain being ignored? I am doing all I can on this end, to help spread the awareness. I feel like childhood cancer is being talked about, everywhere, but I realise that may only be because it’s the world solely live in now. We didn’t ask for much, Mr. President. We simply wanted some fucking lightbulbs changed out for one day, to recognize this world that deserves better. Thanks for not listening, or caring in my opinion. I truly expected more from you. These kids, deserve to be embraced. These kids, deserve to be recognized, not swept under the carpet. As frustrated and sad as I am, this just motivates me more to continue this fight. A little sorry we’re really not sorry light bulb changing is not going to stop me from trying every year, to get this to finally happen.

I have a ton more to write about, but I have to get ready for this little Skype interview set up that I am doing. I forgot to tell you all that I got a phone call from some lovely peeps that run a T.V. show in Florida. They so want to help with our mission and were so touched by our story that they created this show called Emotional Mojo. They asked if I would be up for doing Skype interviews with them, pretty frequently. Of course I said, “HECK YES!” Because I don’t like to say no to anything anymore especially if it can help with more awareness. Who knows what I am getting myself into, but I’ll never know unless I try. You can see the link for the website here. http://emotionalmojo.com My first real interview is Monday. I’ll let you know when I know more. Maybe Poppy will even make an appearance;)

Alright, Ronan. I miss you. I love you. I hope you are safe. Thank you again, Ro baby. I love you so much.

xoxo

P.S. We WILL get to the White House to make them fight harder for our kids who are dealing with cancer. A huge thank you to Mayor Stanton of Phoenix, Arizona for signing our proclamation to declare September as Childhood Cancer Awareness Month. I say, Mayor Gregory Stanton for PRESIDENT. He is a man that cares and sticks to his word. We are truly grateful to have him on our side.

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24 thoughts on “Thanks for nothing, White House.

  1. Jane Bowlin

    So happy for that good. good. news about Ronan’s “Mr. Sparkly.”
    Sending many blessings and much love to you and your beloved family.
    Jane, Richmond VA

  2. Glenda

    RoMama,

    My heart was racing and I was in tears… shaking my head…no it can’t be!
    Thank you Ro for keeping Mr. Sparkly Eyes safe for Mama and Poppy!
    Mayor for Prez… yes!!!
    We will not give up… awareness…childhood cancer!

    xo

  3. J.P.

    …Hoping that your Mr. Sparkly Eyes continues to be strong and fights (like a rock star, of course..) and just left the We the People petition comment box a message that may get me deported…lol…you have opened my eyes and I now spread the word and open the eyes of others…until there is a CURE….

  4. Laura Muller Goddard

    So glad things are okay for Mr. Sparkly Eyes too!
    So very disappointed in the WH response. If they light it up pink in October I’m just going to be beside myself.
    All the same it gives me a reminder that we all have to keep making people aware. One by one.

  5. Hannah Neff

    Dear Maya. Everyone is outraged and disappointed at the WH decision. I was really mad and decided that we need the grassroots to show the President how easily it can be done. My house isn’t white, so my family lit our front window and porch up with Childhood Cancer awareness! (well really yellow curtains with some nice bright lights behind)

    These comments won’t let me attach a photo, but I hope the link to facebook might work: https://www.facebook.com/photo.php?fbid=10151675574746713&set=pcb.10151675580251713&type=1&theater

    I hope we can see more houses lit gold for our kids this month all around the world. I hope we can start with everyone who signed that petition putting something gold up at their home.

    Keep strong, keep going.

    P.S. All the best to Mr Sparkly Eyes for a speedy recovery.

  6. tristina

    I am so mad that the white house isn’t going gold. I am going to tie a ribbon on my tree and write on my car window. I bought the stuff last month but havent gotten around to do it yet but every day is a day lost so I will do it today. Argghhhh I am angry.

  7. Lorraine Fedosoff

    I am Canadian and very disappointed in Mr. Obama. This is so important and it affects everyone. If a protest were to happen, I would be there in a f’ing heartbeat. We need to keep fighting on both sides of the border.

    “If you don’t fight the fights you may not win, how can you call yourself a champion?”
    Adam J. Fedosoff, April 15, 1994 – March 11, 2012.

  8. Amy

    I am so sad for you that another person that you love is fighting cancer. I hope the Mr Sparkly Eyes, who we have all read about and know as a pillar of strength through your darkest times, has a speedy and pain free recovery. I am sorry that life doesn’t always give you the peace and success that you and your cause really, truly deserve. It is beyond me why the WH would ignore this petition. There is no excuse for the pain that this dismissal has caused to all the families.

    Every reader, every Ro-Lovie, every parent and child is standing behind you and your cause. We appreciate everything you are doing, because you really are making a massive difference. You are an amazing family, and I wish you only the best.

  9. Stacy

    Maya have you heard of the Cole Stoddard’s family? While researching on google about turning the White House gold I came acrossed their story which sadly sounds alot like yours. They are trying to light the world gold with awareness. As we know fighting together makes us stronger and harder to ignore. I admire you for everything your doing to make Ronan proud and make people aware of childhood cancer.

  10. Margo

    I got the message from the white house and I told them nobody listens to proclamations and they needed to turn the white house gold

  11. Ali B (@AliBeeee)

    I still think we should all be sending in gold light globes to the White House, but then I am all for passive aggressive responses to things!

    I too feel as if we are being ignored…I have felt it most this month as I post and post and post stuff on facebook and twitter and get fuck all back from everyone except those who have already sat up and listen and rallied to fight this fight. It is BEYOND frustrating and disheartening. I can’t even begin to imagine how you feel, having lost your beautiful Ro.

  12. sjf

    I think we ARE being ignored. I’m a college student and I contacted an organization called “Colleges Against Cancer” which exists in most research universities about how corrupt the ACS is, I listed the salient facts, I urged them to do a Childhood Cancer Awareness event for September – no response. I contacted the local hospital, which proudly organizes a Breast Cancer 5k Walk/Run every year, to do a September event for Childhood Cancer, I would have been happy to organize it – no response. The WH basically ignored us for months and then sent a BS response at the last minute. For September I changed my profile pic on Facebook, Twitter, Gmail to a Childhood Cancer Awareness ribbon. Normally my profile pics get many likes/comments. This one was ignored by all my friends.

    I mean I genuinely don’t understand why people ignore this?

  13. amourningmom

    Hoping that Mr. Sparkly Eyes stays cancer free and healthy!! I wish that the White House had a different response but I am so glad you are not leaving it at that – let us know how we can help.

    Sending hope and hugs. FU CANCER!!

  14. Carol Champagne

    Maya, I live in Vermont and tragically so we have lost a beautiful little 8 year old to Neuroblastoma after a 4 year battle. Christopher Stephen Grimes III. His obituary is in todays Burlington Free Press. I so admire all your love and light for this devastating disease……

      1. sjf

        What an asshole response. I live in NYC and they light up the Empire State building for various reasons throughout the year. I’m an NYU student and they light it purple for our graduation each May. Why not light it Gold for September, I’d rather see that!

  15. Michelle

    Maya,
    I agree with you I think so many people turn a blind eye on the Subject of Childhood Cancer. “It too sad!” “I don’t want to think about it!”…Blah Blah Blah… EXCUSES … I don’t get it at all I do not have a child with cancer or have ever had a child with cancer, I’ve never known anyone in my circle of friends who has a child with cancer, I don’t have any one even in my family or close friends who even have cancer. But I do have 2 beautiful healthy kids who are my world, I read stories like Ronan’s , or Jacob a little boy in my neighborhood who is fighting stage IV High Risk Neuroblastoma. And I look at my babies and thank my lucky stars that they are healthy, but it doesn’t change the fact that there are kids out they are FIGHTING FOR THEIR LIVES! I think my self what if it were one of my kids and that alone is enough for me to help bring awareness to Light in all things CHILDHOOD CANCER…IM BRING AWARENESS THE BEST WAY I KNOW HOW. Even my own friends and family seem to not want to talk about it or do anything to change this which pisses me off making me want to get new friends ;/. This weekend I was out shopping for curtains for our house we just bought and I swear the PINK ribbon is EVERY –FREAKIN- WHERE, they had everything you could think about with that damn ribbon on it! Im all for breast cancer awareness, BUT I AM SOOO READY TO SEE THE GOLD RIBBON EVERYWHERE!! Because they are our future and they need Voices!!

  16. Cole

    I got that e-mail in my inbox, I was pretty fucking disappointed. I waited all this time since signing it to see if they were going to do it and then I got that little bullshit e-mail and I wanted to write to you so badly but I was just so fuming fucking mad that I didn’t even have enough curse words for the e-mail. But I am doing my own Gold for Childhood Cancer Awareness month in the form of wearing this gold nail polish my husband bought me (yes, my husband buys me nail polish from time to time). Bring on the petitions, girl. I’ll sign every fucking one until we get this through.

    xoxo

  17. Elizabeth

    Hi Maya, my name is Elizabeth. I just wanted to let you know how much you and Ro have inspired me. When I first heard the song “Ronan” by Taylor Swift, I sobbed. I had no idea who the inspiration for the song was but I HAD to fins out. So I started searching for an answer, and I found this blog. I started at the beginning, spending all my time reading. Late into the night, during free time, during meals, etc. I soaked up every word, falling jn love with a beautiful boy. Although I knew the ending to the story, nothing could prepare me for the emotional heartache and pain of the ending. Hot fast tears streamed down my face as I read the last few words. I fell asleep with ugly nascara streaks all over my pillows. I can not even begin to imagine the pain you felt. I now have a new dream in my life: to work in the oncology ward. Thankyou for inspiring me and thousands of other people. Thankyou for every thing you do to fight the horrible murderer we call childhood cancer. I will never forget you or Ro or the inspiration you’ve had on my life.

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