I made a new friend and I know you are going to look after her.


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Ronan. Today is 28 months without you and it’s pouring down rain in AZ, naturally.  You always bring me the rain when I am the saddest. I was up on and off through the night.  Waiting for that 3:25 a.m. time when you left this world.  I felt like screaming and throwing fists everywhere until I looked over at your Poppy sister who was sound asleep beside me.  No screaming and crying fits allowed when a peaceful baby is sleeping beside you.  I sent an email to Sparkly instead and screamed and cried to him.  FUC.  I hate cancer.

Dr. Sholler is in town. I took her hiking up Camelback last night. Holy hell it was hard as I have not hiked Camelback since I was about 8 weeks pregnant with your sister. It felt good though and we ended up totally making it a danger day since it was dark as we were coming down. That Dr. Sholler is such a badass that she was fine with it.  We talked a lot about life, loss, this cancer world and how wrong it is.  I like spending time with her as not only a doctor, but on a personal level as well.  I’ve never met a doctor like her who just as passionate about her research, as she is the kids she is treating. She never forgets the faces behind this disease which is a big reason why I love her so much. She won’t ever forget your face and she never even got to treat you.  One of my biggest regrets in all of this is that, but as I am learning, regrets in life will get you nowhere.  It’s about moving forward and making the changes you can with the cards you are dealt. Even if it is the shittiest deck.

Our weekend was spent hanging around at home. Brianna and her girlfriend, Taylor who both just moved here to go to ASU, came over and stayed the night on Friday. Things like this that make me so happy, yet make me so sad, too. Your Brianna Boo, who loved you so much has finally moved here and we get to do such fun family things together, all while you are not here. I spent all Friday night and Saturday morning doing her laundry, your Daddy and I cooked her homemade meals, everyone went to your brothers basketball game, and I took the girls for mani/pedis, too. All while you are not anywhere to be found and I still have a hard time wrapping my head around this reality, our reality which I know is also the reality for so many others out there who are dealing with the loss of a child. It’s a reality that you never get to escape from or take a break from. It’s a reality that is a lot to carry around and the load never gets any lighter. But hey, thank you White House for saying NO to our little petition and thank you Empire State Building for also DENYING our application to light it up GOLD one day in September. So nice to know you will turn The Empire State Building Orange in honor of Nickelodeon on September 16th though. BARF.

Are you freaking kidding me?! This is an outrage and beyond insulting. Does anybody have any pull with the Empire State Building? Maybe if we all send in 5000 applications, they will listen. Here is the form if you so kindly, want to fill it out.

http://www.esbnyc.com/documents/ESB_LP_Questionnaire_FINAL.pdf

Today, I did my Skype interview for Emotional Mojo. I think it went well. I had a lot of fun doing it and one of the producers I’m working with, is awesome. I sent her a little email this morning, just to cover my bases. It went a little something like, “Hey CeCe! Can I cuss on air?” She replied back with something funny like “Noooooo! We are LIVE! If you cuss, you will be thrown into a black abyss and your message will not get out!” She told me to tape a sign to my computer that reminded me so cussing allowed so that is precisely what I did. Worked like a charm as no F bombs were dropped. They are going to check in with me every couple of weeks to see what it is that we are up to. I’m totally excited for this new little awareness outlet. I even rocked my red lipstick on air because we all know shit gets done when it’s a red lipstick kind of day. I’ll post a link when it goes up so you all can check it out. I hope I made you proud today, Ronan. I hope I make you proud everyday as making you proud is what I live to do.

It’s still pouring down here.  After a very productive pow wow lunch with your Poppy sister in tow, I’ve decided throughout this journey, adventure, or whatever you might call it, I am still learning some very hard lessons.  Lessons that are hard, lessons that are sad, lessons about how I need to be a little more protective of myself.  Lessons about how people at the end of the day, do not have my best interest at heart. I feel let down, but I realize I have to take the higher road with some things and just let them go. I have too much darkness in my life already, and I do not need to be dragged down more. As I was told today, “If people are taking away from this cause, and taking away from what you are doing, because of your DEAD child, those people do not need to be in your life. They have forgotten the true meaning behind this and are taking advantage of your situation. You have to just let all of this go, because at the end of the day, we are here because of your dead son and anybody that takes away from that, is not worthy of being a part of this story.” Wise words from a wise lovie whom I should have listened to a long time ago. I have enough weight to carry around with me and at the end of the day I have no more energy left to take on others issues.

It’s days like today that I am just so fucking over the petty once again, BULLSHIT. Your Sparkly called me a few months ago and left me a voicemail telling me about a little girl he had just met and said something like, “You are a hero, you helped to save her life.” I listened to him go on about how a little girl came into the hospital and as he was treating her, this little girl’s mother, got to talking to him. She mentioned my name and told your Sparkly thanks to me, her daughter may end up being o.k. Nela’s mom started reading my blog about two years ago. Nela’s story started off much like ours. It all started with an “off looking eye,” where the doctors told Nela’s mom it was just allergies and she was over reacting. Nela’s mom said thanks to us and our story, she pushed and trusted her mother’s intuition and insisted on an MRI. The MRI showed a mass behind Nela’s eye and it turned out, Nela did not just have allergies. She has been diagnosed with Rhabdomyosarcoma, but luckily, it has been caught early, at Stage 1. Nela’s mom and I have been cooresponding via email messages and just lately, through text messages. I’ve been trying to set aside some time to meet up with her and to meet Nela, but things around here have been beyond slammed. I was coming out of my friend Katie’s kids store the other day and loading Poppy into the car when I saw a mom from across the street, carrying a little girl and she didn’t have much hair. I, of course did a double take as I always do in these situations now. She looked at me and said, “Are you Maya?” I said that I was and she introduced herself and Nela to me. I was a little caught off guard, but in a happy way. I’ve been really wanting to meet this family for a while now. We chatted for a few minutes and I ended up saying, “What are you two up to now? Do you want to come over?” It was so spur of the moment but she had actually been trying to meet up with me on that day, anyway, so it worked out perfectly.

Our new friends came over for about 45 minutes. I watched as Nela ran all about our house. The little thing had so much energy and seemed so happy. I listened to her mom tell me their story as I held on to your Poppy sister. She kept telling me thank you over and over again, even though she said she knows how I don’t like to be told, thanks. I smiled and told her I was happy I could help and if they needed anything, to please let me know. I only teared up after I watched Nela’s mom plop a big, fat kiss on the top of her sweet baby girl’s head. It was at that moment, that my heart sunk a little bit. Moments like that are always bittersweet for me. I am so happy Nela is here and is going to be fine, but gosh, how I miss kissing that sweet little head of yours. And then my mind goes to where you are now, all ashes in an urn. No more bald head to kiss, no more blue eyes to look into, no more hands to hold because they are burnt to a crisp. Is that too morbid? It’s my reality, try living with that every single day. It’s a wonder I am still here.

After our friends left, it was breakdown city. I held your Poppy sister and cried and cried and cried. Your Sparkly ended up calling and I told him, as I was bawling, that I was having a sad day. “I’m sorry,” he said. I miss him, too. C’mon, you have survived sadder days, you are going to be o.k.” I told him I knew as I tried to pull myself together. It didn’t work. I let myself cry a lot for you the next couple of days. All while I continue to fight on and go non-stop because cancer doesn’t sleep so why should I?

Ronan. As you can see, I started this days ago. I am exhausted tonight and I finally had a great run with my friend, Katie, tonight to get some of this angry energy out. I am finally starting to feel like I can get back into a good running routine and I have missed it so much. Tomorrow, we shall inferno hike. Tonight, we sleep.

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

xoxo

 

Nela, you give me hope.

Nela, you give me hope.

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15 Comments

  1. Loved your interview with Emotional Mojo…I just don’t know how anyone can hear your story and NOT be moved by it and want to do something to change it. Please take care of yourself, Maya xo

    Reply
  2. Romama
    I’m glad you’re starting to run again. Pound that pavement and let all that anger out! I’m so glad I finally got to meet your beautiful poppy girl. She’s gorgeous! Thanks for letting me hold her and get my baby fix. See you soon! Xo
    Always rolove. For Ro. Awareness. Goldparty.

    Reply
  3. Daisy Martinez

     /  September 14, 2013

    Dear Maya, I am so sorry for your pain and I really do pray that you find peace one day, even though that day will only come the day you will get to see your little Ro angel once again. I will be happy to fill out that application to help out, and you are right shame on the White House and Empire State building. Best wishes from my family to yours.

    Reply
  4. mandymo19

     /  September 15, 2013

    How would I talk to Maya? I have a question about what she saw in Ronan’s eye to feel it was off as a photo of my own son,Brodyn, looked a little off to me and I would love a little insight so I don’t freak out over nothing.

    Thank you Mandy

    Sent from my iPhone

    Reply
  5. nadine l'abbe

     /  September 15, 2013

    so sad to hear the white HOUSE didn’t want to colour itself GOLD!!!I really thought it would be a done deal :-(

    Reply
  6. Debbie Salisbury

     /  September 15, 2013

    Maya – thank you for writing about the anger and dark thoughts. My son is responding to treatment – so the guilt of bring angry and thinking horrible things is sometimes overwhelming but watching my resin for living having to battle this horrible illness and not being able to do it for him, sometimes gets the better of me and makes me just livid with the life we have been given. Your writing is a reality check that I haven’t finally lost my mind. I’m so sorry for your loss, I would like to day I couldn’t imagine – but unfortunately I can. Thank you for your continued fight. I would be lost without you.

    Reply
  7. Amy

     /  September 15, 2013

    That is at least one life that you have saved so far. You should be proud that this blog has done so much good in this world, particularly in raising awareness. You hate being thanked, but you shouldn’t be so hard on yourself. You are doing so much good in this world with Ronan’s help, and he is doing so much good looking out for all the other kids that have been affected by cancer. I hope Ronan finds a way to bring you more strength, peace and moments of happiness in your dark times.

    Reply
  8. Beth

     /  September 15, 2013

    Just wanted you to know I am in nursing school right now with the plan to be a research nurse in pediatric oncology because of your blog. I always knew I wanted to be a nurse but this blog gave me the courage and direction to go into pediatric oncology. Ronan had forever changed my life. Thank you for keeping his legacy and beautiful soul and blue eyes alive. It has helped more people than you could ever know!

    Reply
  9. tori

     /  September 15, 2013

    I concur, Dr. Sholler is awesome! I listened to her present at an academic conference (to a bunch of scientists) and even in that setting you could tell that she has a heart and truly cares for these kids, not just her reputation as a researcher (which is stellar, too, of course). I was very impressed, needless to say!!!

    Reply
  10. Mary K.

     /  September 16, 2013

    Maya, listen to the Kenny Chesney song – WHO YOU’D BE TODAY.

    Reply
  11. Jen

     /  September 16, 2013

    Maya,

    Is there a blog or caring bridge site to follow Nela’s journey? I would love to be able to follow her and see her concur this horrible monster!! Always praying for you and your family.

    Reply
  12. lauren

     /  September 16, 2013

    ” I am thankful for all those who told me no. I was because of them, I did it myself” Maya, it is going to be and absolutely glorious day when you and your red lipstick conquer the world!

    Reply
  13. Shannon

     /  September 16, 2013

    ARE YOU FUCKING KIDDING ME? NICKELODEON???? Maya, did they really turn down your request, and if so, the REASON?

    Reply
  14. We’re fighting here in Barrie, Ontario as well. http://kicx106.com/kids-helping-kids-with-cancer/

    Reply
  15. erika

     /  September 25, 2013

    Maya, I’m so sad about the White House. I thought for sure it was going to happen. I’ve been following your blog for just over a year now. I saw this story and immediately thought of you. I’m from the Boston area and a few weeks ago, our landmarks (Prudential Tower & Leonard Zakim Bridge) were lit up in gold to raise awareness for childhood cancer. You can see the Zakim Bridge from Children’s hospital.

    http://www.wcvb.com/health/pru-zakim-awash-in-gold-in-honor-of-young-cancer-victims/-/9848730/21748442/-/l6vmvkz/-/index.html

    Reply

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