Because golfing in a TuTu is sometimes necessary

Ronan. Hi baby. I missed you today so much that at times I felt that I couldn’t breathe. I woke up early for not having slept well the night before, but I was ready to start the day anyway. I was tired, but my mind refused to be still. I got up, showered, dressed, and ran out the door. I got a few errands done, ran into the grocery store and came home to make breakfast for your brothers and cousins. We all sat around the table and ate, laughed and talked. It was hard for me to sit there without you, but I did it because it was important to your brothers. It didn’t feel good. Does that make me a bad mama? I don’t know. It would seem like simple things like this would make me happy. They should, right?? Maybe someday, but not now. Your brothers ate huge breakfast which was important as they had their first basketball game at The Village to play. I fed them, they got ready and we all headed out the door. I had to walk through those doors without you today and it was gut wrenching. You used to love to go watch your brothers basketball games. You were their little mascot. I tried to stay focused on watching your brothers, but I was so distracted by you not being there. And there were sooooo many kids everywhere. I could not stop the screaming from inside my head as to why you were not with us. Why did you have to die from Cancer? All of these healthy kids, were running about. I just kept thinking, they have NO idea how lucky they are. I kept wondering if their parents did? If their parents knew how lucky they were to have healthy, happy, carefree, kids. Or is it something that was more of a right, not a privilege to them? I don’t know, but I really I do know. I know how lucky parents are who have healthy kids. How a day should never pass without being grateful for this gift. I know this because of the sickness you fought, for the life we lived in the hospital, and for your death. Your death that is now teaching thousands of people how precious life really is. It seems so unfair that you had to be the one to teach us all this lesson. Why couldn’t it have been me? I would have gladly died in your place. I wish this everyday.

Ro baby. I think I started this a few days ago. Everything is blurry again. The days continue to drag on and on. We’ve kept busy. Your brothers amaze me everyday. You always hear how kids are so resilient, but now I am witnessing it first hand. Both of your brothers are thriving in school. Doing so well and they are such good boys. They are coming home with good grades, both are getting praises from their teachers, and they seem happy. I am glad they won’t know the pain of losing you in the way that I do. I would never want them to feel even a quarter of the way that I do. I am trying really hard to balance their therapy, while making sure they feel somewhat normal. This means play dates, sleep overs, the same chores, responsibilities, and getting them back into a routine of structure and love. I know they hurt, I know they miss you, I know they are sad and confused…. but it is not consuming them. They were really well-adjusted boys before all of this, and I know that is a big part of why they actually seem like they are going to be o.k. It is all I can hope for at this point. I don’t want their lives to be ruined over losing you. I want them to learn from this and understand how precious life really is. They get it. They got it before all of this which seems so unfair. FUCK. I hate trying to justify any of this, because they were already going to turn out to be amazing men anyway. So what. Now they get to become better boys because you died? It’s not right, Ro. I sometimes have to try to rationalize this in any way I can, just to keep me moving forward. The truth is, they should not have to be learning this lesson. There is no rationalizing this because it is just fucked up. Plain and simple.

This weekend was busy. I don’t know what we filled it with, but it was filled. Basketball game, Football on T.V., Inferno Hiking, things around the house. I went golfing on Saturday night. Glow in the dark golfing on a lit up course. If there is one thing I’ve always known about life, it’s that people take it way too seriously. And when you become a “grown up,” it is easy to get lost in the shuffle of responsibilities. I’ve always had a pretty good idea about how to balance both things… silliness and seriousness. I’m a big kid at heart, which is probably why I relate so well to babies/toddlers/children/ and teen-agers. I like fun. I used to be so fun. I used to love to live, which is why Saturday night was so necessary. I saw something in Phoenix Magazine about a glow in the dark golf tournament that was being held. Um… yes please! I called to register, but all the slots were full. I got a call Saturday morning, telling me that two spots had opened up and the man asked if I wanted them. I said, of course. I called up Liz to see if she wanted to go with me as I have been missing her since our summer in Coronado ended. We both have been so busy, so it seemed like the perfect excuse to spend some time with her. Liz does not golf, but she was game anyway. She told me her friend, Heather, wanted to come as well. I met Heather over the summer and she is a doll. I told her to bring her. I told Liz to be prepared as I had somehow gotten it into my head that it was necessary to go glow in the dark golfing, in a TuTu. Why the heck not? My lovely, Katie, just happens to carry TuTu’s at her store. She took a pink and a purple one, off her mannequins for me. I came home, threw on the purple one, for you of course, a black shirt and black flats. Liz about died when I opened the door and I think she may have called me a dork. I told her that she was wearing one too, so she needed to be quiet. Golfing in a TuTu. I cannot believe somebody hasn’t thought of this before. It should be mandatory. It was so much fun and made our golfing night, even better. I did this for you. And for me. Because my life is so sad now, but being in a TuTu for a few hours while whacking a golf ball on a dark glow in the dark course, made me smile and think of you and how much you would have loved being with me. I totally want to put together a golf tournament for you with this idea. All the ladies in TuTu’s just for you. I’ll make the men all wear fake mustaches or something silly like that. The lesson being, life can be hard and for some, harder than others……. but you should always remember how to have fun, even if it is in the form of acting like an 8-year-old child. Adults often forget how to do this as the age thing seems to cripple them. Age is just a number, nothing more. I promise to always try to channel my inner child for you by doing silly things like golfing in a TuTu. It makes me a better mama. And the fact that you had your childhood stolen from you makes me want to channel my inner child that much more. To make up for the life that you never fully got to live. I’m sorry, Ro.

I spent today, keeping busy. I actually got my booty up out of bed at 5 a.m. and went to boot camp. I had lunch with Tammy yesterday and told her if I got some decent sleep, that I would come to her class this morning. I got a good 5 hours in, which I seem to do just fine on. I went to her class and I am so glad I did. I miss it so much. I’m paying the price already though as I am so sore, I can hardly walk.

I’m having a really hard time being home during the day, alone. It is so quiet without you. Too quiet. I have been going to public places when I have emails to get through, bills to open, checks to write, etc….. Today, I went to my Safeway and sat in the Starbucks with my headphones blaring music, while I pounded out email after email. I had two really sweet women come up who recognized me to say Hello and how sorry they were. I cried talking to them both. I couldn’t help it as I was an emotional mess pretty much the entire day. I was glad they said hello as it is always nice to know how many people are thinking about you. I finished up my things and headed off to get a few more things done. Lots of “shit list,” things checked off today. Yay me.

I spent a lot of the day, doing things for others today. Things that should feel really good to me, but they don’t. As I was walking out of Staples, and to my car, I felt like the world was going to swallow me whole. I started bawling. Choking on my tears and feeling like I was surly going to suffocate to death. I was engulfed in a world of loneliness, sadness, pain, and just plain missing my little partner in crime. I somehow made it to my car, but it took me a while to calm down. I drove home but cried the whole way there. Once I got home, I tried to be productive. I am always trying to avoid the silence. I talked to Fernanda and she let me vent/sob to her. I told her over and over that I could not believe you are gone. I asked her why you because I will never understand. I told her how I had spent my day, doing all of these great things, like helping others which is what I know I am meant to do…. but it is never going to fill the huge hole in my heart. She said something like the pain will never go away, but I will learn to live with it. I told her what a shitty way to live. Because it is. To live in constant agony and pain; and knowing that I will never feel better, but this is my new normal. FUCK YOU WORLD. I hate this life. I hate this life without you and I just want you back. But you are not coming back so I am just supposed to continue on, fighting for any ounce of happiness that comes my way once in a blue moon? I want to help others, and I hope someday I can feel something from it. But as of now, it just feels like a fire that lives inside of me. It burns all day long and I feel like it is coming from you. You are the one pushing me forward, to make a difference. You are the one, pushing me to do as many things as I can to help where I am needed, to continue on to fight for all of the kids who are affected by cancer. There are so many out there, Ro. So many sweet babies who are going through this. I had no idea….. I feel like such a fool. My happiness was so simple before and I really did know how lucky we were. I thanked God for my life everyday. I was not ungrateful, mean, or a bad person. I was a good person before all of this but now I have to become better??? I know I do. I know I do for you. As much as I hate all of this pain, I know I still have you to answer to, Ro. You want things in this world to change. I have to be the one to help change them for you, because I want you to be proud of me. I promise to make you proud of me.

I’ve got to go now little one. It’s been a hard day. An awful day of feeling like I am buried alive and drowning all at the same time. I miss you. I love you to the moon and back and hope you are safe. G’nite my little “not spicy,” monkey boy. Sweet dreams, Ro.


P.S. This makes me sick to my stomach. Did you know that pediatric cancer is the #1 disease killer in the US? Pediatric cancer kills more kids then AIDS, Asthma, Multiple Sclerosis and Muscular Dystrophy COMBINED and the really sad part of this is that no one knows this. Doctor’s do not educate parents about this. And to top it off, pediatric cancer research gets the least financial funding. Please help spread this info and save our babies!!!

I am starting a new trend. I think every girl should golf in a mother fucking TuTu. It rules. Go see Katie@Garage. She has the BEST ones.

17 responses to “Because golfing in a TuTu is sometimes necessary”

  1. Night golfing in a Tu Tu, that’s awesome! I hope that made you smile for a little while :).
    I am sorry you had a hard day. I pray for you and think of you daily! It’s so not fair, bad things happening to so many good people, hard to understand. I’m sorry for your pain. 😦 Prayers for you and your family always!! May tomorrow bring you some joy and peace. xoxoxo

  2. Hi Maya,

    I think of you and Ronan everyday…I realize how ignorant I was to this disease before your blog which is why I try to share your story with everyone I know.
    I luv your idea of a golf tourney and tutu’s would
    make it so much more fun! If we could do one here in Longview too that would be cool. A catchy slogan could be “golf fore Ronan and an f–ing cure”. Didn’t think komen would be able to come after you…hope you continue to see your signs from Ronan and keep writing as we all love reading…

  3. The photo in the TuTu made me smile and laugh. Sorry that you having such a difficult time, one day it will be easier. Just don’t beat yourself up, you are doing far better then almost anyone that has lost a child. Keep taking it day by day, I buried myself at home and did not want to go out thing if I just made it through the first year, then I really crumbled. You are going thru each day and dealing with your feelings. So proud of you. All our love, thoughts and prayers to your entire family.

  4. I just wanted to tell you that I went to a music festival this weekend in Dana Point, CA and I saw a girl wearing a FUCK U Cancer T shirt. I thought of you and Ro. Not sure if it was one of your lovelies or not, but needless to say it was pretty rad.

    Hoping tomorrow is one of the good days … take care.

  5. HEY!!
    Just saw the commercial for this:

    To support National Childhood Cancer Awareness Month this September and as part of the second annual Hope Grant September program Hyundai Hope on Wheels will award a record breaking $7.1 million to 71 pediatric cancer research projects and programs at Children’s Oncology Group (COG) institutions across the country.
    In 2011, Hyundai and its dealers will continue their commitment to battling childhood cancer with the “Hyundai Gives Hope on Wheels” initiative during the month of September – Childhood Cancer Awareness Month. In addition to the $2 million raised through the 2010 Hope on Wheels Tour, Hyundai Motor America and Hyundai dealers donated an additional $6.8 million to children’s hospitals and other non-profit organizations across the country through last year’s September initiative.

    For more information on Hyundai Hope on Wheels, visit

  6. Hang in there Maya. love ya

  7. So sorry Maya. I remember those days of all engulfing pain after I lost my dad- how I would feel a little closer to normal and then I would feel like I was drowning all of a sudden, I can’t even imagine the level that you are feeling. I think about you and Ro throughout the day, but at least a few times a day I just stop what I am doing and think “what kind of a FUCKED UP world do we live in that CHILDREN are dying of cancer and people everywhere aren’t OUTRAGED??” I just want to shake people at the grocery store and tell them about Ronan. I want to go into every pediatrician’s office and demand that they tell me how they can justify not testing every baby for neuroblastoma if it could mean saving even ONE beautiful life. You and Ro are helping to wake people up on so many levels. I know that so much will be done for awareness and research in the name of your little Rockstar. Ronan’s life and legacy will outlive all of us thanks to your strength and willingness to share his beautiful spirit with us. And I KNOW that Ronan must have loved watching you golfing in the dark in that adorable outfit 🙂 You so totally rocked that tu tu!

  8. Today I was telling two of my friends about your blog and your beautiful Ronan. I began talking about his gorgeous blue eyes then all three of us got goosebumps, at the same time. I didn’t know your precious Ronan, but I do believe he was there with us. Always in my prayers. Stay strong Maya.

  9. Love your tutu. If even for that time, glad you had a little fun.

    So glad to hear Liam and Quinn are doing well in school and basketball. Glad they are being children.

    Thinking of you and Rockstar Ro!!!

  10. You rock Maya! Thanks for always putting my day in perspective.

  11. I’ve never in my life worn a tutu – but would put my fat ass in one in a heartbeat for Ro! 😉

  12. I LOVE the Tutu’s! That made me laugh out loud! I’m sure Ronan saw you and was so proud of you! I love that you break the rules. I love being solly as well, because life is way to short to be so serious! No thank you! Have a great day!

    lots of hugs!


  13. Tutu golfing! I love it! What a superb idea to bring life’s serious side to the light! Life is becoming way to busy, way to serious, and way to unfocused…love that you were able to brush those all aside and do what’s really important in life:)

  14. Tu Tu’s are the best 🙂

  15. You are amazing. You can make us all laugh & cry in one sentence with your writing. The fact that you can leave the house in a purple tu-tu to play golf shows HOW amazing you truly are. Thank you for reminding us to stop being so serious. Thank you for reminding us that life is too short to care about what anyone thinks. Thank you for sharing your deep, true thoughts with the world. Thank you for being the most amazing mother. I’m so sorry, every day, that you had to lose your sweet, innocent, beautiful child to remind us to live simple, carefree, grateful lives…


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