Ronan. I wrote to you. On your 7 month day. I wrote to you around 2:30 a.m. May 9th was just 7 months ago. Feels like 7 years. I couldn’t sleep at all that night. I ended up making your daddy give me something to help me sleep. The screaming in my head wouldn’t stop. It stopped and I fell asleep. I don’t know where everything I wrote to you went , as it is not here anymore. It’s probably best that way. I’m sure what I had written down, wasn’t pretty. I’m not sure where the week went. It was busy. Non-stop. I’ve been a very busy mama. I had a meeting at T-Gen. They were kind enough to meet with me so I could get an idea about what it is, they are doing in regards to Neuroblastoma. I wanted to see what they are using the 4 million dollars that Dell has given them for. They are working with Dr. Giselle Sholler, whom you know I am very interested in. I have been reading everything about her that I can possibly find. She is on to something big. I look forward to the day I can meet her. I look forward to the day that she can retire, because she is going find a cure for this nasty disease. I sat in a room full of these people from T-Gen. I had to tell them all, a bit about your story. I’ve never really talked about you, in front of a room full of strangers, Ro. I much prefer hiding behind my computer. Glasses on. Hair up. No make-up. Music blaring. Did you see me? The way I was only able to give them the generic basics about what happened to you? The very business like story. I had on my best business like boots. My best business like jacket. My best business like face. Game face on. Because I knew if I said what I really wanted to say, that I would have ended up under the table, sobbing like a baby. How do you tell a room full of people, what you really want to say? How do you tell them the way the love of your life, was ripped out of your arms and how hard you fought to help them beat this disease? How you fought with everything in your entire body, only to fail. So clearly, I failed as a mother because I promised I’d save you, and I didn’t. How do you tell them the way you watched your child die, will haunt you for the rest of your life. So much so that most days you walk around feeling as if all the air has been sucked out of you. How you are now filled with such guilt and shame because you are certain you chose the wrong path for your child. Because if the right one had been chosen, you would still be here. Death would not have been the outcome, right? I know what you are saying. That this is not the case. Because if there were ever 2 parents, who knew this disease inside and out…. it was us. If there were ever two parents, who tried their hardest…. it was us. If there were ever two parents, who loved a little boy the most…. it was us. But it was not good enough Ronan. We failed. I hope I don’t always believe this, but the grief thing is still blinding me and beating me to a pulp. So much so that I have bruises all over my body and I have no idea where they have come from. The funny thing is, these bruises appear and I don’t even feel them so I don’t notice them until I look down and I see a huge black and blue mark on my leg. Or my arm. I just assume I don’t feel them, because I don’t feel much of anything anymore.
So, the meeting at T-Gen I took your Mr. Sparkly Eyes with me. I am so thankful he went as he has a way of knowing how to put my thoughts into words, without me having to say anything at all. Because he was there, though all of this. He watched the way this played out. He saw your smiles, listened to your laughs, watched my tears, listened to my screams, at sat back, helplessly, when there was nothing left to do. His insider’s/outsider’s perspective on this was useful as well. I get that I am the emotional mommy who just lost her son. He was able to play the role of the level-headed, logical one who loved you as well…. but not in the way that a mother loves her son. As soon as we left T-Gen I got the talk. The one that he is so good at giving. The one that went something like, “This is it. This is what you were meant to do. I don’t care how hard this gets, I don’t care how much you want to give up. You cannot. Do you hear me? You cannot. This is it. You are going to change this so that one day, when I am gone, you can look up there and give me a little wave and tell me you did it.” I couldn’t even reply to that one. I only choked back my tears and said something like, “Where are you going,??” Which in turn ended up in the,”I’m not going to live forever talk.” The one I choose to ignore, every time it comes up.
From T-Gen, I went home. Wiped out from the day. I had a board meeting to go to though so I had to man up as they say. I was dreading it. Our last one was a disaster. It was so painful and everyone was on edge. I expected this one to be the same way. It wasn’t. It was lovely, but long. 3 hours long. It ran really smoothly and all of our concerns were addressed but in the most loving way possible. After we wrapped things up, I looked around the room and felt a wave of warmth wash over me. Like something very big and magical was about to happen. All because of the women that I was surrounded with whom were all there for one reason. Because of you. Because they believe in you and they know they are going to be a part of something so beautiful and true. Something different and unique. Something that is going to change their lives…. for the better. They believe in you. They believe in me. That is more than I could ever ask for, Ro. I felt you all around us that entire night. Thank you for that, baby. I really needed that in the worst way possible.
I spent that next day, feeling pretty beat. I think the whole not sleeping thing, the T-Gen meeting, the board meeting, and not seeing Dr. Jo, caught up to me. Thursday came and I tried my very best to suck it up and carry on with the world. Mandy Bee spent the morning with me, doing distracting things. I was out with her for a couple of hours. I knew I was going to crack. I looked at her and told her that I needed to go home, as I was feeling like I couldn’t handle much more of the real world for the day. She took me home, helped me with a few things around the house and played the role of the best jewish mother that I have come to love, so much. She told me she could stay if I needed her to. I gave her one of my best bullshit smiles as she calls them and told her it was o.k. I needed the quiet time. I knew what was about to happen and I just had to give into it. She left. I crawled into bed and sobbed the rest of the day. Thankfully, Liam and Quinn stayed the night with Mimi and Papa so I didn’t have to put on a show for anyone. I got up to run to an appointment. I came back home. Your daddy and I were supposed to go to a concert. He came home. He saw my puffy eyes. I told him, I couldn’t go. I told him to please go without me, to have fun with his friends. I could tell he needed to blow off some steam. I told him I just wanted to stay in bed and be sad. I don’t do that often enough. I was in no mood to go out in public and pretend. Your daddy went. I stayed home. I cried for 15 hours that day and night. I cried for you until I could take no more. That’s when I had to take the little magic go to sleep pill. I thought all of that crying would have knocked me out. It didn’t. The screaming in my head and the silence of the house were too much to take. I passed out. I woke up feeling o.k. 7 months had arrived. I just had to make it through the day.
I had a busy busy busy Friday. I saw Dr. Jo. It was good. It’s always good. I had a lunch to go to after I left her. A lunch that turned your very sad 7 month day, into a very sweet day instead. I met with a new friend. I say new friend, because I have a feeling about this new person. You know that feeling when you meet somebody and you just kind of go, oh hello person I feel like I’ve known my entire life, but I’m just meeting for the first time, today. That is how I felt when I met this person. Her name is Kristi. Kristi Michaels. She knows that Rock Star person we talked about in a few posts before this one. She knows him, very, very well. She knows him, better than anyone. Hellos were said. Hugs were given. We hopped in her car where we sat for a good 20 minutes before leaving for lunch. We sat and talked. I guess we more cried, than talked. I was a mess. She was a mess. We sat and she listened as I told her about you and this sad story that nobody wants to hear about. Because childhood cancer is just too sad so people would rather ignore it because if you ignore it, surly it will go away, right Ro? Bullshit. Somewhere in the middle of all the tears, Kristi said Bret wanted my permission to do something in honor of you. He wanted to ask my permission to have a room at Barrows Medical Center, where he was treated for his brain aneurysm, named after you. Built for you. With your little face, smiling down at the kids below. A play place for the kids to go. A safe and happy place full of all things wild and free. Because you are that beautiful, Ronan, that nobody wants to forget your face. Kristi and Bret and going to make sure that you don’t get lost in all of this. They want to help make sure to help spread the word in any way possible, any way I need or want. This is just the beginning of great things to come. They know that it is not acceptable for kids to be dying of cancer due to the lack of funding and awareness. You should not have died. You just should not have, Ronan. This was not the way this was supposed to turn out. But for fucks sake, it did. And I swear to you, I’m not going to stop telling your story until people start to listen. And things start to change. Kristi was crying when she told me about this. She was also crying when she told me that Bret wore your bracelet in his Pet Smart campaign. And also, in their Christmas Card picture which she gave me while we sat in the car. I opened up their Christmas Card. This was after my little rant about Fuck the Holidays and Fuck Holiday Cards. I smiled when I looked at the faces on the card. I smiled because it was at that exact moment, that I knew that this family, staring back at me, was truer than true. It wasn’t a FAKE or PHONY holiday card, Ro! It was them. It was who they are. It was everything Rock and Roll and Love combined. Their card, told their story and no words were needed. Music. Tattoos. Dogs. Black. Dark. Edgy. But soft too. Smiles. And the best thing of all…. one of their little girls, is wearing a Santa Hat with little Devil Horns sticking out of the top. The exact kind of Santa Hat, I would have put you in Ronan. I smiled at this Christmas Card. It made my day.
We left for lunch after we composed ourselves. It was the kind of lunch where you find out you have a lot of things in common. Small town girls. Big city dreams, but small town girls at heart, forever. A love for nature. A belief in true love. How you both think, being a mom is the best thing ever. How you both believe in raising your kids in an open and honest world. Sometimes maybe a little too honest which others judge. You both tell those people, to fuck off. Because at the end of the day, you both know that as long as you are true to yourself and your family, nothing else matters. Because fucked up things happen everyday like kids dying. And you never know when everything could change in an instant. So you’d better make the best of this time by being true to where your heart leads you. Especially if it is wild and free. The best adventures are wild and free…. right baby? I know you knew this from the second you were born and it was the way you lived you life every single day. I cannot even begin to imagine the things you would have done in this world, Ronan….. had you been given the chance. At one point during lunch, my passion for you took over and I was blabbing about how I much I believe in you and how I refuse to do this any other way than the way that my heart is telling me to. The way, you are telling me to. I don’t remember exactly what I was saying, but Kristi looked at me and goes, “You remind me, so much of Bret.” This caught me off guard but in the best way possible. She then went on to tell me how if Bret would have listened to all the people in his life, telling him he was going nowhere, how he couldn’t sing, etc….. that he would have ended up a truck driver. He was told no, so many times. He didn’t listen. He kept going. He chased his dreams. He broke downs all the doors that were slammed in his face. He ignored all of the asshole people who for some sick and twisted reason, thrive on keeping others down. He is proof that if you believe in something enough, anything is possible. Anything. Even a cure for this fucking disease that killed you. A CURE. I said it. Dream big or go the fuck home.
After lunch, the 7 months since you left me lunch that actually turned out to be a beautiful day….. thank you, Kristi<3<3 I ran back to Dr. Jo’s. We had another little session with some of our lovelies, Ronan. I think they have been having a hard time…. trying so hard to understand all of this. They both just want to understand so badly what it is that I am going through…… and for as hard as they have been trying, I think they feel lost. I felt like Dr. Jo could make a little sense of this, more so than I can. I’m too caught up in it all. She is the expert not only experience, but education as well. Dr. Jo was sweet enough to meet with all of us, so she could listen to their concerns and she did her best to let them into the world that I now, live in. I think it was helpful. I hope it was to them. It was the least I could do. I know I say I want to be alone and push everyone away. Sometimes that is true. But some days it is not. I don’t want to lose everybody in this process. I want to make them understand even if it is just a tiny bit, without having to go through something like this. I don’t know if that is even possible, but I feel better knowing that I am trying when all I want to do is give up and not care. I care. I know I do. I’m too loving of a person, not to.
I took Mandy Bee barefoot hiking today with me. Because we are badass. I didn’t hike up the mountain. I ran. Barefoot. Take that, mother fucker cancer. I’d like to do it again, tomorrow. I didn’t feel a thing. Dr. Jo is leaving tonight for a week to a silent mediation retreat. I have been panicking. She sent me a text before she left. It said for me to please take good care of myself while she is gone. How she needs me as she can’t change this world, on her own. She’s not going to have to. You will help her, my bravest little boy. I know this.
Has this turned into a novel tonight or what? I’m sorry. That’s what I get for not keeping up with you. I hate the nights that I don’t write but my head has been a mess. I have much more to say, little one but I need to get some shut-eye. I’m feeling tired, which doesn’t happen naturally very often anymore. I miss you. I love you. I hope you are safe. I’ll forever be sorry.
G’nite baby doll.
The Guest House
This being human is a guest house.
Every morning a new arrival.
A joy, a depression, a meanness,
some momentary awareness comes
as an unexpected visitor.
Welcome and entertain them all!
Even if they’re a crowd of sorrows,
who violently sweep your house
empty of its furniture,
still, treat each guest honorably.
He may be clearing you out
for some new delight.
The dark thought, the shame, the malice,
meet them at the door laughing,
and invite them in.
Be grateful for whoever comes,
because each has been sent
as a guide from beyond.