May the odds be ever in your favor


Ronan. I’m in route back to Phoenix. I spent the afternoon with Dr. Sholler. I came here for a very specific reason. I am leaving here with the answers I wanted. I am leaving here with clearer vision of my plan. I am leaving here feeling strong, motivated, and ready to kick some ass. I have no doubt everything that I am going to do, is going to get done. I know what I am doing is a very big job. But there is no job too big when it comes to saving the lives of these kids who are fighting this awful disease. It’s the freaking least I can do. They are the one’s doing the really, really hard work. The least I can do is make it easier for them and a little less scary. The least I can do is give back to this world that I love so much now. The only world that I seem to flourish in and love. I don’t belong in any other world anymore. This is my world. I’m not running away and going back to the pretend world that I know I could have if I wanted it. The one full of pretend dinners, pretend problems, pretend complaints. Everything in life is fixable when you have your health and everyone in your family is alive and well. I don’t live in that kind of world anymore. I cannot go back to it and abandon all of this. That would kill me. This I know. This life without you is hard, Ronan. But I can live in it by trying to fix all I the problems that I see. I can live in by trying to help others going through this. I can live in it by pouring everything I have left of myself into it so I can live a new life now. This is the life I want. This is the life that I will fight for. I will make this world better for others going through it. I have people say to me all the time, “Isn’t it hard for you to be around this?” “Isn’t it hard for you to be at the hospital?” “It must be hard for you to still be a part of this world.” I usually just reply that it is not hard. That is the only world I feel like I belong in. I don’t know how to explain it. I must be crazy, right?? Maybe. But crazy feels good to me.

I know I have met my match with Dr. Sholler. I seem a lot of similarities between us. She cares about her families so much. She thinks outside the box. She’s a rule breaker. She doesn’t like the word, “No.” She refuses to accept it. She is looking at this disease in a way that most people have been too scared to do so. She knows things have to change and is here, to change them. I am here to help her in any way that I can. She is a dream for these kids fighting this disease. I am beyond sad that we did not find out about her sooner. Of course, I think she would have saved you because that is the mama in me talking. The mama in me that will forever constantly beat myself up for not saving you. I know how hard your daddy and I fought for you. I know how much we educated ourselves. But at the end of the day, it was not enough. At the end of the day, this is my fault. Will I cry the rest of my life because I believe this? Yes. But it will also be the reason that I fight for the rest of my life, too. Because I know I will make this better for the others out there who will walk this path next. Unfortunately, there is not a shortage of kids’ getting this disease. I swear I am hearing about more and more of them, everyday. I know I cannot stop the diagnoses of the kids that get this disease. But the odds of survival, need to be in their favor. Not against them. Why is this acceptable in this day and age? Who would ever stack the odds against a helpless group of kids? Greedy people, that’s who. Hello big pharma. Thank you for killing my child. I’m not going to go there tonight. I’m too tired and I have too many other things to fight for, right now. Someday, I will take them on. But not now. That is way too big of a fight for me to take on at the moment. That problem is too out of my hands. I’ve got to handle the things that I feel I can help change, now. Not 20 years from now.
This is hard for me. I don’t like not talking about all of my 50 million ideas. I don’t like not being able to write about what it is, I am working on when all I want to do is scream it from the rooftops. I promise, very soon I will do this, but not now. Right now, I have to sit in a time out, in a corner, and just be with all of this. I will know when the time is right. I don’t feel like I am there yet. Thank you all for being patient with me. Thank you all for believing in me and waiting this out with me. I promise you, it will be worth the wait.
Be thankful for the life you have. Please. Do you all know how lucky you are, that you are just readers? I would give anything to be just a reader and not the one living this freaking never-ending nightmare. I miss my Ronan so very much. The missing him does not become less as time goes on. The pain from not having him does not lessen as time goes on. It only becomes deeper and harder. I wish people would stop acting like I am doing better. Like I have just recovered from the death of my imaginary dog or something. I will NEVER recover from this. I will NEVER get better. I will change. I will grow. I will learn how to survive in HELL. I will learn how to fight harder just to breathe, eat, sleep, laugh, love, and go on. I make a choice everyday to walk on this earth. It is not a given right to me anymore. It is a choice that I decide every single day to do. It is painful, scary, sad, and lonely. But what kind of mama would I be, if I didn’t risk it all, for my child? For you, Ronan, I will risk it all for as long as you decide to keep me here. My life is yours. Your life is mine. I will live them both, for the two of us.
I’m home Ro. I hiked the inferno with your Tricia today. It was hot. It felt nice to be with her though. I miss her. She misses me. We both miss you. I missed you the rest of the day something fierce. I laid in your bed for a while tonight. I cried. I’m tired. I’m sad. But most of all, I am sorry.
This is all for tonight, my love. I hope you enjoyed your bedtime story. I love you. Thank you for being with me the past couple of days. I know you know I cannot do this, without you. I love you. Sweet dreams, baby doll. I hope you are safe.
xoxo
About these ads
Leave a comment

6 Comments

  1. I know you’ll never be ‘better’. This is not something that i can see anyone recovering from losing their child. But I love how you are channeling your emotions into something positive though. It would be so easy for you to go down a path of destruction…but you have chosen to fight for everybody else’s kids…it is truly a remarkable thing to behold because i believe with all my heart that you will be a big part of changing the future of children with this disease.
    Someone said to me the other day that we should just give up – there will never be a cure to cancer. Wow…that blew my away. Just because it looks impossible, doesn’t mean we shouldn’t try! Even if all we can do is provide people with another 5 years, or with treatments that aren’t so brutal and debilitating – that would be something in itself. It is people like that who just blow my mind. How can we not try?!
    I know that because of you and Ronan, anything is possible. If you can get out of bed every day and keep going, then the least I can do is to spread some awareness, wear my Ronan bracelets and support you in anyway i can. This is getting long…to sum it all up – you are fucking epically awesome!!!

    Reply
  2. Glenda

     /  June 30, 2012

    Thinking of you RoMama.
    Thinking of Rockstar Ronan. Always RoLove!!! Fucancer!!!

    Reply
  3. L

     /  June 30, 2012

    Love you mama! Proud of you for fighting, living with a broken heart, and for everything you have masterminded for these sweet cancer babies. I wish Ronan didn’t live in your heart, he deserves to be here. <3

    Reply
  4. Hailey

     /  July 1, 2012

    unfortunately not every reader here is just a reader, my little sister passed away from brain cancer this year. I love how you channel your anger, RoMama, you are awesome! CANCER SUCKS.

    Reply
  5. Laura

     /  July 1, 2012

    Proud that you are finding the path you want to change the face of childhood cancer. We send ou thoughts and love to your entire family.

    Reply
  6. Melissa V

     /  July 1, 2012

    Well your brilliant mind and beautiful soul do better and better each day. I can not even believe the things you are accomplishing! ROOOmazing! But I know better than the fact that you are “getting better”–that will never ever be, but please keep doing better and better each day–as we all should. Wish this was not your story–but beyond grateful that I am able to be a teeny tiny part of it! Love to you always, Maya.

    Reply

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

  • Instagram is my BFF

    Wise words Wednesday. #ronan #fucancer #wisewordswednesday #truth #fsu @brimelone Pearl is really regretting last nights decisions and the fact that she is grounded from the car. #pearl #ronan #fucancer #regretful #walkofshame #pearlishungover #pearlisgrounded #blacksheep #getyourshittogetherpearl Pearl called her attorney who got the charges dropped immediately. Thanks @woodythompson75. We'll get her home safe and sound. #pearl #ronan #pearlwillneedtosleepthisoff #thiswafflewillsoberherup #blacksheep #getyourshittogetherpearl #pearlisgrounded #fucancer
Follow

Get every new post delivered to your Inbox.

Join 24,342 other followers

%d bloggers like this: