The Death of a Domestic Goddess

tumblr_medw43k3Ar1qzdeblo1_500Ronan. I don’t sleep well. I know this is not healthy, not good for me or Poppy, but every single night this is how it goes. I fall asleep easily enough for a few hours. Then like clockwork, I am wide awake and cannot fall back asleep. How do you sleep peacefully when you have a dead child? Does anyone? Your daddy seems to. Maybe it’s because I’m your mama, that I don’t. Because my primal maternal instinct just takes over. I feel like a caged animal, searching for you. I wonder if this is how animals at a zoo feel that have been separated from their young. I’ll bet it is pretty similar.

Today, I did a lot of normal things that I don’t really enjoy anymore. Much of them consisted of being domestic. I have a hard time with that in this new life of mine. I did the whole Costco trip which I never do anymore because it give me so much anxiety. Today, I did it with a friend, so it wasn’t so bad. I came home, unloaded groceries, got dinner ready for tonight and finished up all the laundry that needed to be done. The laundry that I used to love to do, but now I loath, due to not getting to wash all of your clothes, too. I picked up your brothers from school. We came home, I made them a snack, we did their homework, etc… I was feeling pretty beat down/tired like I seem to be feeling a lot these days. Grief and pregnancy are not my cup of tea. I had a hard time being pregnant back in my life before knowing what it was like to have a dead child as well as being pregnant, too. Being pregnant with this Poppy girl just seems to make my pain for missing you, much more intense. I am officially a little over halfway in this pregnancy. I wish I could say I felt great, but I don’t. I feel miserable. Tonight, as I was taking a bath I thought to myself, “I wonder if I’ll survive being pregnant. I think I might die, from hurting so much.” I had a flash of death, like I often do. But then I thought of your brothers of course and that always seems to put me back on track. I know one thing, for sure. I cannot do this again. I cannot have another child, after this. It has all been too painful, and too much. I just need these next 4 months to fly by fast, please. I know I will be alright once Poppy is here, safe and sound. I cannot wait to have a little insomnia buddy to hang out with me;)

I think a lot of my problem is my mind is constantly wound up. I have such a huge to do list in front of me, that my mind is constantly thinking of things to do or that need to be done. The Neuroblastoma Center being at the top of it. Barb from NPR asked me if I thought this center was a reality. I told her without a doubt, it is. She asked me how I was going to get it done. My reply to her was, “I’m not exactly sure. All I know is I have someone very powerful behind me on this, that being Ronan, and I’m just going to follow his lead.” As long as I trust in you, I know this dream will become a reality. Do you know how much I believe in your foundation and what we are doing, Ronan? So much so, that when I was working through the details of where the money was going to go from the song Taylor wrote for you, I made the choice to have everything that came our way from iTunes, go to your foundation. I know I could have used it for our family, for your brothers’ college savings account or Poppy’s new room… but I didn’t. Because I believe that helping to save these kids’ lives, by giving them the best chance possible, is the most important thing in the world. Everything else can wait. These kids cannot and I will not stop trying to fix this world, until it gets drastically better. I know this center will do this. I know what needs to be done, to make these lives a little better for these kids so they don’t feel like they are just another number, the way we often did. I know this is going to take time. I am trying to be as patient as I can. I realize I am dealing with a lot, on top of trying to get this center figured out. Sometimes, I’m not sure how I am doing everything I am doing. But then I remember, I am living without you every single day. There is nothing harder than that.

We are going to see your Nana and Papa for Christmas. That cannot come soon enough. It has been unseasonably hot here and it’s starting to make me really hostile. I need a break from the sun. I need to get to Washington, where I feel like I can actually breathe for a change. I need the rain, the gloom, and the fresh air. I need the safe house I grew up in, with the best parents ever. I need to watch the way your brothers are so happy in the presence of your Nana and Papa and vise versa. I need the love that fills that house and where I feel the most loved. I am counting down the days, already. I know we all are.

I am going to try to go back to sleep now. I have much to do tomorrow and not getting enough sleep is not going to help me to be productive. I miss you. I love you. I hope you are safe. Sweet dreams, baby doll.

xoxo

My dream doesn’t scare me because my dream is you.

I have a dream. A really, really, really, big dream. I’ve been sitting on this dream for a while, trying to figure out when the right time to announce it would be. I’ve been talking to a handful of people about this dream, but for the most part it’s been kept pretty hush-hush. This is one of the reasons, I’ve been so busy Ronan. I’ve been meeting with so many people for months now. Taking so many trips, having so many meetings, phone calls, and lunches. I’ve been chasing this dream of mine, trying to figure out how I can make it a reality. It all came one night, so clearly, out of the blue. Your daddy and I had been to dinner with some friends of ours. It was a magical dinner where we talked a lot about you and how things are just not changing for this disease. It was a dinner filled with, we know we can change things, we feel the power Ronan has to change this, we know our little boy would want us to do something really huge and big, to impact this world in such a big way. We both left the dinner knowing what needed to be done.

The car ride was quiet on the way home. I was trying to wrap my head around the epiphany¬†that I had just had. I was in our bedroom and your daddy looked at me and said, “Let’s build a World Class Neuroblastoma Research/Care Center.” I couldn’t believe my ears. He took the words right out of my mouth. It was one of those moments where you know with every bone in your body, that you are married to your absolute soul mate in life. I teared up and said, “Let’s build World class Neuroblastoma Research/Care Center.” I had no clue how we were going to do it, but I knew that this was our new secret mission and we were going to figure out how to make this happen.

We started talking about ideas. It needs this, this, and this. Who can help us? I reached out to a small group of people. I was fully prepared for the, “This idea is too crazy and big… what in the world are you doing?” I got a lot of those, but they also came with sides of, “If anyone can do this, it’s you and Ronan.” I have been working non-stop on this for a good 8-months now, trying to put all the pieces together like a puzzle. They have slowly been coming together. I have a list. A very big list. I have a vision and a dream of how this center will look. To me, it is so beautiful and safe. I want to create a safe community for these families, where they don’t feel as if they are just another number. Where they know that they matter and they know they have the best doctors/child-life specialist/volunteers/nurses taking care of them. Where they know they are NOT alone. Where they have someone to hold their hand, all the way through this, even if the worst possible outcome happens and a child dies. They will NOT be thrown out into the street like garbage, never to be checked on again. I have a crazy list of crazy things that will be necessities for the care center part of this. A yoga studio! A go beat the shit out of a punching bag area! A quiet area. A movie theatre! A chapel. A theater where kids can put on plays and perform! An Art area! A kick ass play area! A garden! A music room! My list could go on and on. I WILL give these kids the childhood they are being robbed of. I will give them the life they deserve to live, but are having to live it while fighting cancer. I know I can make this world better Ronan. I know I can. I know you can, too.

This is all I have been doing/thinking about. I presented it to my board a few months ago. I think saw their heads start to spin. I quietly told them that I wanted this to be our new mission and although I didn’t know how we were going to get it done, we were going to get it done. I was told by a Master Yoda of mine, to wait to throw this out into the world. How the timing had to be just right. I had dinner with my Master Yoda a couple of weekends ago. I looked at him after our dinner and said, “How will I know when the time is right, to put this out there?” He just looked at me and said, “Maya, you will know.” I left that dinner telling myself to just trust in myself, you, this universe and when the time was right, I would know.

The time is right now. I know this because of the ways the stars have aligned and the way divine intervention is taking place. I know this is all because of you. I am ready to put this out there. I know what it is, we are going to do. I am going to create the best world possible for a child and a family diagnosed with Neuroblastoma, to be taken care of. I can take the pain of losing you, Ronan, and turn it into something beautiful. For a long time, I didn’t think I was going to be able to do this. For a long time, I was so scared this pain was going to destroy me and everything I had. It was only after the idea of this center came to me, that I figured out how I could survive this. It is by being able to help others in such a way that only a mother who has experienced such a devastating loss, can do so. I can do this in a way that is so different from others. I can take all of my pain and magically spin it into beauty because of the love that I know from you. I made you a big promise when you died. You left me here, knowing I was not going to do something small. I have always known the things that I do for you, are going be huge. I have always known you would lead me to where it is I needed to go. I have always trusted in you to map out this path for me. This is what we were meant to do. This is what we are going to do. This dream doesn’t even scare me, because I know I have you behind me and you won’t let me fail.

I know how hard this is going to be, but it cannot possibly be as hard as living my life without you. If I can do that, I can do anything.

I sent out an email asking my board if they were o.k. with me announcing our new little mission. Their responses left me with tears pouring down my cheeks. One of my board members responded back with, “Just Do It!,” (taken from Nike). Then she wrote back and said, “Or as my dad says, JFDI!” (just fucking do it!) I was crying and laughing all at the same time. I LOVE THEM ALL SO MUCH! I love that they are so behind this! It means everything to me. I had Tricia tell me not long ago that she hadn’t seen me so excited about something, in such a very long time, as I was about this. She told me she knew this was going to happen just due to seeing my passion, excitement, and fire behind it. I loved hearing that from her. I am glad people can still see that in me. It takes a lot to bring it out.

You know those days I disappear, and I don’t write? It’s not because I have dug myself into a hole and I am hiding. It’s because in between grieving, being a wife, mama, trying to be a friend again, trying to find myself a little bit again, I’ve been working on this with everything I have. This is what I want to do for you. This is now, my ultimate goal, besides a cure for the thing that killed you and took you away from me. I will fight until I die, with everything I have, for the rest of my life for this and for you and the other kids who deserve better. I am not going to slink away or disappear. This is my life mission. This is what I was meant to do. I will fix this, Ronan. I promise.

I love you baby doll. I miss you, I love you, I hope you are safe. Thank you for guiding me in everything I do.

xoxo

P.S. Dear loviest of lovelies,

I hope you know how much I appreciate all your love and support. I hope you know how much I appreciate you sticking by me through all of this because you knew with all of your hearts Ronan was going to do something amazing. This to me seems pretty amazing. This is why I am so thankful, for every dollar you have sent our way. Every penny counts. Especially now. You humble me. You make me want to shoot for the stars. You give me strength and keep me going, on the darkest of days. Thank you so much for loving me in a way that I never knew strangers could love someone. Thank you for loving my little boy so much that it makes you want to be better people. I love that so much. I know this is a big job, but I also know my Master Yoda was right. If anyone can do this, it’s us. I also know that I could not do any of this without all of you. I will forever be grateful for you all. I love you.

Also, please watch Stand Up 2 Cancer tomorrow night. It’s the one night of the year, where we can all stand up together. They are a great organization, doing amazing things.Things have to change and it’s a very powerful show with a very special message for anyone who has been touched by cancer. Thank you.