The eagle has landed!! Or maybe just Maya has landed in Austin, Texas.

 

Ronan. I had our white party, yesterday. I had it solo and it really wasn’t much of a party at all. But I wore all white and just did my normal, everyday stuff. I didn’t bring it up to your brothers. They don’t need to know every single one of these dates, all in a row, the way I do. I will protect them from what I can and the date that we had your service last year, didn’t seem like a day I needed to remind them of. They have been reminded of enough lately. My party didn’t last long, my party wasn’t very fun. I don’t think P Diddy, would have enjoyed it. I am glad he didn’t come. I spent the majority of yesterday, unpacking all of our suitcases and doing about 20 loads of laundry. I am anal like that. I needed everything to be put away/clean so I could feel o.k. about turning right around to hop on another flight. I am in route to Austin, Texas as we speak, but due to US Airways sucking balls, our flight has been massively delayed.

I am heading out to Austin, Texas to go to the Dell Children’s Medical Center for the 2012 NMTRC Symposium. I am going to listen to them talk about the latest in genomics-based personalized treatments for neuroblastoma in children. You see, when you believe in something or someone as much as I do, you will do whatever it takes to support them and learn as much as you can, about what they are doing. Even if that means surviving the worst month of the year, being beat down, tired, numb, sad and alone; but still continuing to move forward. I believe in Dr. Giselle Sholler this much. I believe in her, so much that I will do whatever it takes to help support her in whatever way I can. As of now, going to this conference is my way of saying thank you to her. For all that she is doing. It is my way of supporting her and it is a great way to learn the everything I possibly can, about what she is doing. Yes, I am tired. Yes, I just had a brutal past week. Yes, I would like to just crawl in my bed and not come out for a while. Yes, I probably need a break. But now is not the time for this. Right now, I have work to do. Right now, there is no stopping. I am too angry at this disease to stop and come up for air. I will eventually, but not now. Dr. JoRo texted me to see how I was doing. I told her I was in the zone. She told me she was worried. That my “zone,” makes her nervous. That she feels like I just got though the dates of hell, and now here I am, off again to do more, more, and more. I told her I knew. That I was nervous too. I told her I expected to have a breakdown next week. But not this week. This week I have some stuff to take care of. This week I can power through because I am strong even when I am not. I am doing this week, because this is what comes along with still taking care of you. I say this all the time, but this is my way of taking care of you. I will always put you, before myself. Always.

So yesterday, I played catch up all day. I got everything in the house, taken care of which in turn will lessen my anxiety and it will be nice not to come home to a shit storm of suitcases/dirty clothes, everywhere. I could not handle that so I powered through the day. I slept last night, off and on. No Ambien needed. I think I mostly tossed and turned. I sent some emails at some very vampire times so this tells me I really did not sleep at all. Today was more of the same stuff. I finished packing. I ran to Safeway to get our Hallie a little something for her birthday. I dropped it off at Green Cleaners for her and got to run in and give my friend a hug. She is my friend and she loved you. I think I made her day. I hope so, because she often makes mine. Whenever I’m having a bad day, I will run by to see Hallie because her mouth and her sass always makes me laugh. Laugher to me, is priceless. Not many things make me laugh anymore. She always does. I hope she had a nice birthday. She deserves to.

I am finally here. I am tired. I spent much of the flight with my head buried in your blanket, crying. Tonight, I am beating myself up. Tonight, I am filled with we should have done this. Tonight I am filled with, why didn’t we do that? Tonight, the only voice I hear in my head is I didn’t do enough to save you. In my irrational mind, if that were true, you would still be here. I know this is not logical. I know this an impossible standard to live with. I see how absurd this all sounds. It’s not a fun place to be, but this is where I am, as of tonight. I hope to wake up tomorrow, wearing a new set of glasses that seem less foggy and hard to see out of. Sometimes, things get really blurry and foggy with these glasses of regret and shame on. Maybe I just need some sleep.

Alright little one. I love you. I miss you. I hope you are safe. Sweet dreams. I love you to the moon and back.

xoxo

I’m having a white party tomorrow. Do you think P Diddy would want to come?

Ronan. Do you know how I feel tonight? Hollow. Empty. I swear, it’s just one thing after another. I just had a Mother’s Day that no mother would ever want. All after your death day, your birthday/the day you were cremated (on your fucking birthday), Mother’s Day, and now tomorrow, is the day we had your fucking services, last year. May is a sick fucking joke. Next year, I am going to Iceland for May and living in a fucking igloo and ignoring May, all together. I came home from our trip, numb. I am totally numb again. How can I not be? I’m numb without the help of any anti-depressants. The one’s that everyone wanted to numb me with and still want to numb me with. I’m still here screaming that I don’t want to be numb. I will feel this, the way I am supposed to feel this and not by taking medications to help me not feel this. I want to feel this. I deserve to feel this pain. I am strong enough to handle it, no matter how much it hurts. I think my body is having a natural numbness physical reaction, all on it’s own. Because these dates, right after another, are just too much.

Mother’s Day was banned. Well, at least it was in my head. I let Liam and Quinn still think it was happening, because I don’t want to ruin everything for them. I took Mother’s Day and turned it into a day, all about them. I had a Liam and Quinn day and didn’t make a peep. I don’t think I even cried. See, I told you I was numb. We went to a Red Sox game, which they LOVED. We went and had a BBQ dinner at our friends’ house and they loved that just as much. We let our 4 kids run around and play with each other, but it still should have been 6. We sat with our friends into the night, talking normal talk and cancer talk. That’s the way it will always be. But it was easier with these friends, to be around them on Mother’s Day. I took comfort in all of our sadness on this “Happy Day,” of the year. I sat and thought a lot about your Fairy RoMo. I texted her it was indeed not Mother’s Day but Fairy RoMo day instead! I told her how you would have went craaaaazy over her Goldilocks hair and I know she would have loved you like her own. I am changing Mother’s Day to Fairy RoMo day. Because the love/kindness/support/and heart of your Fairy RoMo should be celebrated on this day. So it was, for her. I let my thoughts soften a bit while thinking about all the beauty that just exudes out of her, all the time. Like there is just sparkly glitter falling from the sky, when she is near. That’s how I feel anyway. It makes me feel peaceful, happy and inspired. There is that lucky world again, Ro. I am so lucky, to have her in our lives. Thanks for bringing us to each other. Another one of your little gifts, I know.

We made it home now and all I want to is run screaming back to Maine. Preferably Cape Elizabeth where I totally left my broken heart. I could see my broken heart mending there, quite well. You know what I felt while we were there, besides sad? Peaceful, calm, quiet, relaxed… I felt the pieces of me, that I miss so much. Your brothers felt it too. For such an awful reason to go away, Ro baby, it was the best place we could have possibly went. Maine and Cape Cod. Your brothers were so in their element there. They were so happy and carefree. They were so sweet and we spent so much time, outdoors playing in the beach, on rocks, on logs, in the water, in the woods, getting lost with each other and slipping into their childhood that they should know. The only childhood they should know where their baby brother, does not get cancer and die. It should have been the 5 of us there, Ronan. My heart is ripped to shreds that it is not and never will be again. But your brothers, they are happy. I guess that means your daddy and I are doing a good job, despite all of this. I don’t know how, but we just keep skipping along, not missing a beat because now, only their happiness is what matters to me. Mine can wait. I can put mine on hold, forever. Liam and Quinn will not be robbed of anymore happiness. They are too good of boys to have anymore hurt come a long. So, Ro… I still cry in front of them. But not as often. I laugh more with them and hide all the guilt that washes over me when I do. Guilt that they do not need to see or hear about. Adult guilt that I hope they never have to know about, in this way. Your dead child guilt where everything you do feels wrong… even telling another little boy at a hospital how brave he is while you are in visiting him. FUCK. Did I really just tell him he was brave. OH MY GOD. I only used to tell Ronan that. I just betrayed, Ronan. Fuck. I have to leave. I do. Tears pouring. Ronan. I’m sorry. You were the bravest little boy, I’ve ever known. I’m sorry if that hurt your feelings. I tell you thinks like this all the time because the guilt never goes away. It’s heavy to carry but that’s just the way it is. Once your child dies, you don’t stop taking care of them. It just continues on in a different form. I still have 3 kids to take care of. Why else would I be doing your Foundation, Ro? My number one reason is it is my way of still being your mom, still taking care of you, and still doing a really good job at it. A job that is going to be done, so well due to how much I love you and you love me. This is why your foundation will change things. Because our love is powerful enough to do so and because I promised to fight for these kids and families until things start to get better. Like a freaking CURE for Neuroblastoma. Let’s start with that. That is what we are going to do with our passion, drive, energy and love. We are going to help these doctors but we are also going to help these families. No family should feel so alone in this, the way we did. It was wrong, wrong, wrong. I have a big list of things that need to be fixed. I’ve been working on that list with Dr. JoRo. We will get to each and every thing, one by one so that maybe a family will not just feel like another number. They deserve so much more than that.

Tomorrow is May 15th. The day we had your services last year and I remember NOTHING about it. I think I smiled a lot. I think I did the “Thank you for coming.” I think I thought I was floating on air and I probably was. I wore white. Everyone did. So for tomorrow, it only makes sense to wear all white again. I’ll do this, on this day, every year for the rest of my life. I’m having my own White Party and P Diddy is not invited. Unless he wants to donate a fuckton of money to Ronan so we can start to put our master plan into place. The master plan starts soon. I’m running with it because I have to. Because it is a good idea. Because it is so needed. So, P Diddy, you can come to my White Party tomorrow but be prepared to bring your big fat checkbook. I only need about 10 million dollars. My White Party might suck compared to the fancy one’s you throw every year. With all your fancy people, cars, clothes, etc…. My white party is just going to be me and my son’s Urn. We might have a dance party together. He loved to have dance parties. My party will probably involve tears, but they will be the saddest tears you’ve ever seen for the most beautiful little boy who ever lived. They don’t all have to be sad, they could be happy ones too because I think you might come to the conclusion that my White Party kicks the shit out of yours just for the cause alone. You know, just trying to save some kids’ lives. Cancer Kids who live right here, in the U.S.A. We’ve got a lot of problems of our own, right here. I wish you celeb types would stop and look around here. You could help save so many of these babies who don’t even know how to fight, but they are the strongest fighters I’ve ever seen in my life. They are the true heroes, warriors, fighters. They deserve to have a strong voice to start stepping up and helping them. They deserve to have a chance at growing up. I don’t want anymore families to go through what we have gone through. What we have lost which is everything. Ronan was EVERYTHING to our entire family, not just me. He was everything to Woody, Liam and Quinn. I don’t want what happened to us, to happen to anyone else which is why people like P Diddy need to start helping. People listen to celebs.They need to start focusing on Childhood Cancer. It is worth fighting for with everything you have. Because what if it were your child? Wouldn’t you want to know, the best of everything was out there and the survival rates had improved?? Of course you would but this takes work, money, research, education, and dedication. All of those things seem so easily accessible when you look at these kids whom you are fighting for. Each and every one of them, are worth it and they need to stop being overlooked.

Yeah. That would be my rant and rave for the night. (shout out to AMBIEN) which I have not taken in weeks, but tonight, coming home to your empty bed about threw me over the edge. I needed a night to peace out. So, tomorrow is an all white day for me. That’s what I’m doing. I also might just take Ro’s Urn out with me everywhere I go. I’m kinda serious about that. I do need to invest in that baby Bjorn. Grocery store, here we come!!!

G’nite Ro baby. I miss you. I love you. I hope you are safe. I’ve come to the conclusion that you were just too perfect and beautiful for this world, so you are someplace so much better… just waiting for me. I’ll see you when it’s my time. I love you, little man.

xoxo