Here’s what I know about life. Nothing.

Ronan. You know what I know about life? Nothing. Except for almost 4 years, I took care of you almost every single day. And then from the time you were diagnosed from the time you passed away, I was so emerged in the fighting for your life world and all of a sudden it’s just gone. Just like that. And now I am expected to go back to “life.” How wrong is that? How does one do that? I don’t know. You know what I feel like? This came to me last night as I was waiting for the devil Ambien to kick in, because yes, I’m back to that for the moment. I feel like somebody has taken my body out to the Arctic Sea. I feel like I am constantly being dipped in and out of that freezing ocean. And just as soon as I am starting to defrost, I am dipped back in where my entire body is shocked to the core. In and out in and out. It’s a never-ending feeling of numbness and pain in which I have no control over. That’s the best way I can describe it tonight, anyway. Then I was thinking about the outside, non bereaved world. I’ll bet they think the pain of this is something like putting a your most favorite dog to sleep. Not because they love their kids any less, but because I think unless you are in this situation, although you may try to understand you cannot possibly have any idea of how much this truly hurts. Does that sound cold, insensitive, and harsh? I don’t mean to. I’m only trying my best to explain how deep this pain is, to the outside world. Of how I know how much they think they can understand this, but they cannot. And for that, I am glad. I wouldn’t wish this on anyone. I would never want somebody who has not gone though something like this, to truly be able to understand the pain that comes along with it. Not fully anyway. It is just too much.

This past week has been much harder than I had expected. I get that the holidays are around the corner and I keep hearing everyone talk about how hard they are going to be for us, but I’ve been doing my best just to get by. It’s only been these past few days that I have realized that I have no control over anything, no matter how strong I am trying to be. I’ve been crying non-stop. I am trying so hard to give Liam and Quinn a somewhat normal Christmas. I took them to Target and told them to pick out some things. I tried my best to put on my pretend mommy boots because they deserve to have a nice Christmas, whatever that means. But this year, when they were picking out a few things, I made them pick out some things for your friend here, Super Nate who is battling Neuroblastoma as well. They picked out a blue light saber that really lights up, a clone trooper bobble head, and your favorite, “guys helmet,” Captain Rex. I am trying my best to make sure they still get to be 8 years olds, having an 8-year-old Christmas, when all I want to do is strangle Santa and shoot the fucking elf on the shelfs head off with a machine gun.  I’ve had a talk with them about how hard this Christmas is going to be on all of us. I don’t know if what I am doing is right but all I know is I’m not going to hide the fact that this is our first Christmas without you and it fucking blows. I’ve told them this in a much nicer PG rating way though…… although I didn’t want to. I wanted to scream, kick, cuss and cry in front of them, but I didn’t. Somethings have to be done a little more gently with a little mama love thrown in. I’m running on empty but I gave it all I had. I hope it was enough.

I went to PCH I think on Wednesday or Thursday night. I can’t remember now. I went to see Nate and to give him his toys. I stayed a lot longer than I expected. He was so excited about the real light saber. I felt so blessed to be able to give it to him, from you. He let me play with him in his bed and he even let his mama slip out to take some things to her car and grab some food. I got to stay with him, alone. What a little doll. We played the funny monkey game on my iPhone but my favorite part was when I had him giggling up a storm by making his Storm Trooper bobble head eat some cheerios. His little laugh was priceless. He even let me kiss his bald head and said I could come back sometime to play. Just as I was walking out, I saw one of your favorites, playroom Kathy. She kidnapped me and I ended up staying another hour, just catching up with her. I saw some of your other favorite nurses, Kathy and Katie O. I cried when I saw them as I haven’t seen the two of them, since we were there getting your last round of chemo. I asked if you very favorite nurse, Arica was there but she was not. I told them to give her a hug for us anyway. It was nice to see them all but it made me super sad that you were not there with me. It turned into a full on party because Miss Elizabeth Blair ended up being on the floor as well, getting treatment. I got to give her a hug as well as her mommy and daddy. I left PCH feeling drained, but in a good way, I guess. I told your Mr. Sparkly Eyes that now going to a hospital to make a little boy smile feels so much better to me than sitting in a fancy restaurant, trying to enjoy something normal. Normal does not feel good. Normal does not exist. I would rather be off, doing something for someone else, than trying to pretend to live in a normal world where pretend normal dinners will never be the same. So, when I get a night out….. I would rather sit in a hospital with a bald-headed little boy than in a restaurant full of friendly faces. This is just the way it is now.

Being in our house has been really hard for me all week. Everything is making my skin crawl. Dr. Jo has been gone which I’m sure is part of the reason, I feel like I’m going to flip out. She has become my lifeline and the fact that I have not been able to see or talk to her, has been really difficult on me. Much harder on me than I thought it was going to be. I’ve been so tired from not sleeping well. I came home on Thursday and passed out for a little bit. Naps used to come so easily to me. To us. I fell asleep for about 15 minutes. It was restless and I dreamed of you, but in the worst way possible. I dreamed that I was watching you from your radiation table. You were looking at me in the eyes with such a look of trust because you knew that I was going to save you, because that is what I had promised. But than you died. I woke up to this nightmare only to find that it was indeed, my reality. It wasn’t a nightmare at all. I had dreamed the truth. So now for the past week sleep has become so painful and the days are too much to handle so I crawl into bed, begging to black out. This is where my frenemy, Ambien, has come back into play. I’m not happy about this at all. But sometimes, I need a break from everything. Including life.

I’ve been hiking and being active to try to calm down the never-ending screaming in my head. It’s not helping. I went up Camelback, late tonight, just like I’d said I’d never do again. I did. But this time, I was able to use my handy little flashlight app on my iPhone so I could see better. Thanks friends.

Ro baby. This is all for tonight. My brain is mush, my eyes are tired, and my heart is not fucking healing. I just want you back. Or I just want to be with you. I love you. I miss you. I hope you are safe.

xoxo

Baby Danger Plan….. Activate!

Ronan. I know you know when I’m quiet on here, it’s when I’m at my worst. Dr. JoRo keeps telling me to be kind to myself. I haven’t been. I’ve been downright mean to myself. I say I’m not depressed as I feel it is so unfair to diagnose one with depression when they are going through something like losing a child. It’s just another thing that is wrong with this oh so not compassionate world we live in. It is much easier to diagnose somebody and walk away. It is much easier, to label them. Or put them on a pill and not deal with the real issues at hand. I’m not depressed. I’m just really, really sad. I guess this is probably what it feels like to a normal person who suffers from depression. I wish I were just a normal person, who was depressed. I wish I wasn’t this way, because you died. I can hardly remember what I was like before all of this. I’ve been hiding out a lot. I didn’t go to the holiday party with my small group of closest besties on Saturday night. Little M hosted it like she does every year. I miss her so much. I’ve now missed our holiday party, two years in a row. I went for a run in the dark instead after I had been in bed all day long on Saturday. But Saturday wasn’t my fault. I was hit with a 100 pound brick when all I was trying to do was be a normal mama. Liam and Quinn had a basketball game early on Saturday morning. I didn’t want to go, but I sucked it up and I did. I wasn’t prepared for what I walked into. A gym. Full of I swear, what was 200 people. That’s what it felt like to me. An encounter where I felt like a deer in headlights and I swear all eyes were on me. An encounter that has been a long time coming, but I wish it had been anywhere but there. A basketball team that all of your friends from preschool, were playing on. Mommy friends that I have not seen in a very long time. A basketball game that you should have been playing in. You weren’t. But everyone else was. I think I blacked out for much of this encounter. Or at least I left my body. I was hysterical. I ended up on a bench, trying to focus on your brothers but all I could do was look around at all the empty faces in the gym, waiting to see you. I didn’t find you. You didn’t come. I was left there, alone, to pick up the pieces as always. I wanted to run away. At one point, I almost bolted. I tried but it felt like my feet were glued to the gymnasium floor. I stayed. But I didn’t clap and cheer. I cried instead.

After I got home from Liam and Quinn’s basketball game, I crawled into Liam’s bed. I passed out. I stayed there, until 6:00 at night. I only got up when Danielle called to ask if I wanted to meet her for a dark run on the canal. How could I turn down a run after the day I had? I couldn’t. We ran. We talked. We parted ways after about 4 miles. She ran to her house. I walked on the dark canal alone. I stopped to look up at the moon. I stood and looked at the water. I stood and contemplated if I would really drown if I jumped into the canal. I stood for about 15 minutes playing out the scene in my head. I decided that death would probably not be the outcome, so it wasn’t worth it. I would have ended up wet, cold, and lord knows what kind of creepy crawly dirty rodents live in the canal. My fear of those things, stopped me. I finished up my run and came home to your daddy and brothers. I fell asleep with Quinn in his bed. I decided that Sunday, I was in a funk in a bad way. I gave myself a pep talk to try to get myself out of it. I decided that a hike was necessary. Mandy came over and we went. I told her that we needed to hike the mountain, barefoot. She is crazy enough that she didn’t even look at me twice. I think her shoes were off, faster than mine. We hiked. I ran. I got a lot of weird looks. It felt good to feel the pain beneath my feet. It made me feel alive. I came home and we had Kenny, Stacy and their kiddos over for dinner. I played with Kennedy. Oh, that little spicy girl. She reminds me so much of you. She let me paint her nails all pink and sparkly. We ran around outside. We played a let’s scare the boys game. We played your hot lava game, outside. I tried to feel happy. It only made me miss you more.

I spent today, Monday, being productive. I woke up to the pouring down rain. My favorite days. Our favorite days. I dropped your brothers at school and was determined to get in a hike. I ran up our mountain in the cold, windy rain. I stood at the top and let the wind whip around and slap me in the face. I watched the gray skies as they came pouring in and the rain and wind got more and more angry. I headed down the mountain, running as fast as my legs would carry me. I didn’t see another soul there. Only Inferno Fuckwad Bob met me. I wasn’t happy to see him but I did my best to pour my energy into myself and you. I tried not to give in to him. I got a lot done today. I got a lot things crossed off of my list. I survived. I’m here. I’m trying to be happy about it, but I’m not. Oh! But I know a nice thing that happened today! I stopped by Katie’s to check in. I actually hung out in the back of her store and worked on some foundation things. I had my headphones on and I was on a mission to get some things done. As I was getting ready to leave, I headed to the front and I saw a lady buying some of your bracelets. She looked like the nicest grandma and I wanted to hug her the moment I saw that she was holding your Fuck You Cancer, bracelets. I sat and watched her for a minute before I said, “Hi, I’m Maya.” She looked so surprised. She gave me a big hug and told me she was buying the bracelets for her granddaughter who lives in New Jersey. She said her name was Ally. I knew who she was talking about right away. I try my best to keep up with your lovies, Ro. The ones who are always reposting about you, who talk about you, who Facebook, and Twitter about you. I try my hardest to always be thankful for these lovies as they are all going to help change this disease. She told me her granddaughter would be so excited to know that she had met me. She told me all about the essay she wrote about you for the college she was applying to. She got accepted and she’s getting a scholarship too. Her grandma called her while I was in the store and put me on the phone with her. It was the sweetest thing ever, Ro. This sweet Ally girl, couldn’t even talk, she was crying so hard. I told her how thankful I was, for her support. How excited I was for her college opportunities. I told her I hoped I would get the chance to meet her someday. It made my day. See Ronan. You are changing the world. Look how inspiring you are, to all kinds of people everywhere. It’s such a good thing to be wild and free.

I need to start being wild and free. I told my Mandy Bee this yesterday. That we needed to do something dangerous this week. I told her to come up with a plan. She did. We will execute, tomorrow. As for now, I’m keeping it a secret. I will tell you more tomorrow. I need to blow off some of this steam. I’ve decided that something, “dangerous,” needs to happen every week in order to give me something to look forward to. I’ll be accepting suggestions from you all. Don’t disappoint me:). I know you won’t. I’m going to create a Ronan’s bucket list and live it out, for you. I’m game for anything. I like a challenge. I like to try new things. This could actually turn into something really fun. We should all be living our lives doing new and exciting things. Even if it means, spending the day in a library or going to a movie alone. As long as it’s something that you normally wouldn’t do. Ronan, we didn’t call you Baby Danger, for nothing. I’m going to start embracing this Baby Danger of mine. It was my favorite nickname for you. Get busy living or get busy dying. I’ve got one foot stuck in both worlds right now. It is beyond confusing. It’s beyond sad. I need to make some plans, otherwise I’m going to sit here and just drown in these tears. You would be so mad at me and the way I’ve been, Ro. I know this. I’m sorry. I’m making plans, baby doll. Lots and lots of plans.

I’m going now baby. I love you. I’ll be extra spicy for you tomorrow. Sweet dreams beautiful boy. I miss you so much. I hope you are safe. Oh, Ro baby. I need you to watch over Mia for me. Please. I talked to Sandra tonight. Mia is trying so hard to get better. I need you to help her, please. This is so not fair, for any of them. It is killing me. They need a break. They deserve a break. Please. Send Mia the strength to get better. I know the way Mia is fighting, is because you are helping her. I know that is you. Keep going baby. She needs you more than ever.

Also, lovies….. if you want to do something sweet, send Mia some mail. I’ll bet this would brighten her day. She is in Philly now, at Chop. What little girl, doesn’t love getting mail?? She loves kitty cats, sparkly things, hello kitty, princesses….. all things girly and fun. Have your kids, draw her a picture or write her a sweet note. I know she is missing home. I know she is missing her family. I know this would make her smile. Here is her address. They will be there, for awhile. At least another month. Thank you so much. For something so little, it means so much.
Children’s Hospital of Philadelphia
Seashore House
Patient: Mia Foutz, Room 300
34th Street and Civic Center Boulevard
Philadelphia, PA 19104 – 4399

xoxo

Ro baby. Super Nate’s mama sent me this picture tonight of him, by your tree at PCH. She said his jaw dropped when he saw it and thanks for making their day. This picture made me so happy but then I ended up on our bed, tears pouring. For so many reasons. For you. For me. For us. For Nate. For Nate’s parents. For everyone out there, dealing with cancer in whatever way, shape or form. For anyone who has ever lost a child. The reasons were endless. I miss your bald head. So very, very much.

I know you’re yelling out to Nate, “May the force be with you, Super Nate!” You’ve got to help him too. I know you will. Thanks baby. I love you.

Last Day! VOTE, VOTE, VOTE!!!!!!!!!!!!

 

 

 

 

 

 

Voting ends tomorrow and it’s neck and neck. Vote if you have not, thank you if you have, but let’s keep spreading the word!! Then I will finally shut up about this contest:) Thanks lovelies!!

Regardless if I win, I am honored to have been nominated. Thank you to the person who nominated me, thank you to all the people who have voted and spread the word, thank you for being the most amazing voices for Ronan. We are going to move mountains with his LOVE!!!!
http://mom.babble.com/mom/mominations/mominees/charity/maya-thompson