Tag: Grand Rapids

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

Though she be but little, she is fierce!

Ronan. Cancer doesn’t rest so why should I? I know I just got home from California, but I am off again. I’m on a flight as we speak. I’ve had this trip planned for a while now, but I just haven’t brought it up. I’m in route to Grand Rapids, Michigan to visit Dr. Sholler. I have some things I need to talk to her about. Some things that the wheels in my head, won’t stop spinning about. I told you I’m not in this to sit back and do nothing. I am in this to do big things and I have some really big ideas. I will share them when the time is right, but as for now I need to keep them to myself. Until I have this master plan of mine, all mapped out to a tee. I’ve been working non-stop on this plan of mine which is actually really all of yours. Everything I do is for you, fueled by you, and motivated by you. I don’t want any of the credit for this is not my plan, it is yours. I truly believe this. This is just the way this has to be. Go big or go fucking home, right? Without a doubt.

I have felt alright the past few days. It was actually o.k. coming home. I missed AZ. I missed our house. I missed my friends, although I didn’t really have time to see anyone. I had time to get unpacked, laundry done, repacked, errands ran, your brothers situated, and off I went to the airport. I am excited for the next few days here. I already have a good feeling about this trip. Although you know I would give anything to not having to do any of this at all. I would give anything to be back at home, taking care of you. That’s all I really ever wanted in life, was to be a mom to you and your brothers. I was so happy doing this. I would like to say a big fuck you tonight to the dickwad, who decided to turn my life upside down, in the worst way possible. I would also like to give a big fuck you to the person in front of me who has been slamming his seat into my legs for the past 3 hours. He’s about to taste the back of me hand. Kidding. Kind of.
I don’t have a ton to say tonight. I think I might have been in a not so good mood today. I think I found myself being bitter and mad at all that I am doing, in the name of my dead child. I close my eyes a lot when I think about this. I see your beautiful face and my heart and stomach both drop to the floor. I stop breathing sometimes during all of this. I have to remind myself to breathe and focus on what it is that I will do, because of you. I sit back and try to block out all the noise that exists in my world now. I sit back and I picture a long dark tunnel with a light at the end. I tell myself not to look sideways. I tell myself not to get distracted. I tell myself I will see you, once I get to the end of this very dark tunnel. You are the light at the end, that will be waiting for me. This takes discipline, self-control and patience. I can do this. I remind myself all the time how brave you were, though out this entire fucking fucked-up journey. How much you loved me. You know what kills me the most, Ronan? That you loved me so much, that you never doubted that I was going to get you better and save you. You trusted me so much that you getting better was never even a question in your mind. I failed you no matter what anyone says. I did. I don’t care how out of my hands this was, I still failed you and let you down. This is why I know I will not fail at this. I will make this up to you in the only way that I can, as of now. I think I would like to run another fucking marathon just because I can. Somebody sign me up. I’m pissed and I seem to take out my anger best when it comes in the form of doing something physical. Can somebody find me something harder to do? I mean, do you know how hard it is to live everyday without you? Anything else this fucking world throws my way just seems easy.
Ro baby. I am here now. I spent the entire day with Dr. Sholler and we had dinner as well. You know who else is the light at the end of this very dark tunnel? She is. She will change the face of this disease. Mark my words. I’ve never believed in someone as much as you, until now. As we were sitting talking tonight, it was all I could do to contain my tears. Tears of happiness, tears of sadness, tears of regret, tears of all things bittersweet. I wish I could talk more about all the things going on. It’s hard for me to write on here, but not really be able to write. I’ve got to wrap my head around a lot of things. A lot of things that are going to change the world. Are you ready for all of this?? I think that you are. I think that it’s time. I’ll never forget the words I whispered to you, right before you passed away. You were fighting so hard to stay on this earth with me. You waited until I told you it was o.k., to stop fighting. My exact words??? “Come on baby doll. Come with me. Let’s get outta this place.” Your heart stopped right after I said those words to you. You had to go to your other place. You were so brave, to listen to me. I wonder all the time if you were scared. I go back and forth with this a lot. I think you knew it was your time to go to your other place, but I know you were still holding my hand, refusing to let go. I know you are still with me, helping me do all of this. I know I could not do any of this, without you. I love you so much. Thank you for giving me the strength I need, when I need it most. I’m going to try to get some rest now. It’s late and I have a lot to do tomorrow here in this sweet little town with the most badass doctor, that ever existed. I brought her a gift today. One of our little F U Cancer shirts. Her reaction was priceless. She loved it, to say the least;) Lots of things to come, I promise you that.
Look what your lovie, Charisma did for you. She is rocking the red carpet, with one of your little bracelets. She is so beautiful on the inside and out. We are so lucky to have her love. I know she is going to help us change this awful world as well. Thanks, Charisma… for truly caring about my little boy, our family, and wanting to help these other kids, who are fighting this awful fight and who deserve a voice to help them. I love you.
G’nite, Ro. Sweet dreams. I miss you. I love you. I hope you are safe.
xoxo