Texas and a Rockstar


Ronan. I am home from Texas. I am beat from all of our traveling and feel like I could sleep for a week. I went there for one reason and one reason only. I ended up leaving there being reminded of why I choose to do this. Of why I choose to continue this and not to give up. Because this is a choice that you have made for me and nobody else. I will forever listen to you. I had the chance to meet many other parents who are fighting this fight. Some of their kids have passed away. Some of their kids are still fighting and fighting hard. Nobody is giving up. If anything, these parents are fighting even harder for what was taken from them. Whether it be their child’s life or their child’s health. Nobody is going anywhere. None of these parents are giving up until childhood cancer starts getting the attention it deserves and until a cure for Neuroblastoma is found. No parent should have to endure what we have all had to endure. No child should have to fight childhood cancer, the way you did or the way these kids did or are. It’s not right. It’s not fair. And time is not on anybody’s side. The wheel of treating childhood cancer is a very slow moving wheel and if it continues to stay this way, nothing will change. This is not acceptable.

I was able to spend some time with the person I consider to be my ultimate Rockstar; besides you. I spent some time with Dr. Giselle Sholler. I’ve met her before, but this time I had the chance to spend some real quality time with her. She just might be one of the most amazing human beings put on this planet. And I’m not exaggerating. Not only is she a bloody genius, but she is so personable, normal and funny… all which blew my mind. We talked about a lot of things. Neuroblastoma things. You things. Yoga things. Surfing things. Family things. Disappointment things. Ultimate dream things. We share a lot of the same dreams. We laughed a lot. I was my bravest and strongest when talking about you and what it is that I want to see done. My ultimate dream. I did not cry. I held it together and gathered all of my strength and did not crumble. I was strong for you. I was strong for me. I was strong for the both of us. I think I did alright. Everything I am doing, is for you. You would not want this cancer world to be this way for anymore kids. You would not want this cancer world to be this way for anymore families. We went through enough. We went through way too much. We should not have been so alone, scared, broken, and left to fend and fight for every single thing, the way we had to. You know we can fix this and make this better. I will fix this for you because this is what you would want. I will fix this for you, because I can. I will fix this and make this world less scary and more HOPEFUL. (that was for you, Rita.) Hope. The word that seems lost on me but slowly it is starting to make its way back into my life a bit. It’s hard to believe in hope when all your hope was stolen away from you. I will never love that word again, but I am trying not to vomit every time I hear it. I had so much hope for you, little one. This is certainly not how I hoped this would end up. Which is why this is not the end. I will continue to go on because stopping now, would be unacceptable. I won’t let you down, Ronan.

I have been sleeping. Like really sleeping. Falling asleep easily at night and staying that way. No Ambien needed. I don’t know why I go through spurts of this but I just do. I still have moments all the time where I’m just about to fall asleep and I drift off, thinking of you. Just as I am about to fall asleep, I’ll have a vision of you dying and I am jolted out of my sleep, feeling like I have been stabbed and cannot breathe. Things like this happen to me all the time. I am sure it will always be this way. How could it not be? I came home from Texas feeling better than I have felt in a while. All that flew out the window as soon as I walked into our house. It’s hard for me to be here, without you. It brings your daddy comfort and peace. Our house, does not do this for me. Our house fills me with a sadness that never seems to lift. I think it slowly might be killing me. But I will find a way to manage this sadness as I am not about to uproot our family from this place that everyone else, seems to find comfort in. Especially your brothers. I think leaving here, the place where they seem to only have happy memories of you, would be really hard on them. I’d rather have it be hard on me, than them. So I will just continue to do what I am doing which is spend as little time here as possible, during the day when I am alone. And when I am here with your brothers and daddy, I will try to focus on their happiness, giggles, and laughter. Or I will sometimes give myself a break and pull the sheets over my head for an hour or so like I did today. I felt tired today for no reason other than I think I was just tired of missing you.

I was a good mom, today. I went with your daddy, Uncle Jay, Charlene, Liam and Quinn, to breakfast. They all rode their bikes. I ran. I ran beside Liam and picked him up when he fell. A fall that happened so hard and so fast, that I ended up falling on top of him as I was running really closely behind him. He was o.k., just scared. He still is not a big fan of the whole bike riding thing. Quinn does it so effortlessly. Liam does not. He is still wobbly and unsure of himself. Our bike rides always kill me because they remind me of how much you loved to ride your bike. How much time the two of us spent, practicing and how proud you were of your bike riding skills. You would have totally had your training wheels off by now. You would have ridden circles around Liam. I cannot believe you are not here, to do this with us. Bike rides will never be the same for me again which is maybe why I chose to run. Either that or maybe because I have a little 26.2 miles to run in less than 2 weeks. Errrr…. I’m not sure how I’m going to pull this one off. I might be getting a little nervous for it only because I remember how hard I trained when I ran my one and only full marathon in NYC. I trained like crazy and I still thought it was the hardest thing I had ever done in my life. I have not trained a lick for this one. I guess I feel like I am running a marathon, everyday of my life now. That is how much having you gone, hurts. Nothing can be as hard as losing you, right? I think I’ll run this thing numb while pouring all of my anger/hurt/heart and soul into it. Those things alone should get me through it. Those things and knowing that I am doing this for you and all of those other kids who will never get to run a marathon because they were cheated out of life. If I don’t die doing this, I think I might be kind of awesome for doing this. I think it might be something that will make me smile. 26.2 here I come!!

I spent the rest of this Sunday, being productive. I have a board meeting tomorrow night so I met up with my secret board member (Becca) and my other awesome secret board member (thiscrazychickwhoskydivessolo) to go over some things. We sat around and to updated some things on your foundation website and hashed out some other details about some things going on. I had a breakdown in the middle of a parking lot due to a phone call that I had in my car. I was thankful for the friend that was there to give me a hug when I needed it. It’s not always good to be alone in dealing with this. Sometimes a hug, an ear to listen, and a shoulder to cry on, help. I was thankful for that Rita today, as I am every single day. How did you know, I needed her so much when I wasn’t even aware that I needed her so much? I don’t know where I would be without her and that is the Rohonest truth. I am lucky to have her.

Your brothers are sleeping. Your daddy is out for a bit seeing some friends. I am tired and have a lot to do this week. I need to get some shut eye. I love you. I miss you. I hope you are safe. Sweet dreams, Ro baby.

xoxo

Advertisements

6 thoughts on “Texas and a Rockstar

  1. Laura

    You are sounding like you have truly made progress, so proud of you. Our love and thoughts are always with you and your entire family.

  2. Ali Barnes

    I am constantly blown away by you, Maya…the way you keep going and keep fighting. You are moving mountains, Mama. If you weren’t as amazing as you are, people like Taylor Swift and Bret Michaels would be able to ignore neuroblastoma. You make it impossible to turn away. We are all with you for the long haul.

  3. Jenn

    You’re amazing! Keep fighting and keeping using that sweet little boy as your inspiration! Thinking of you and your family every single day!

  4. Melissa V

    You are the rockstar! Badass Inca Rockstar! Love hearing that Scholler is so completely awesome. Restores some HOPE (sorry for mentioning that naught word) in western medicine.

  5. Pingback: Get your Groove on, Running out of Time | hopeiswinning

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