4 Months feels like 4 Years. Thanks, Cancer. You’re AWESOME.

Ro. I can write tonight. I need to write tonight. It’s been a couple of days I think. I don’t know that I’ll be able to sleep tonight. It’s creeping up. The 9th of every month date. 3:30 a.m. will be here soon. I’ve been dreading it all week. Consumed by it. 4 months is almost here. What was I doing at this time, 4 months ago? Laying with you, while Fernanda sat and watched you so we could get some sleep together. I was cuddled up beside you, which was always my favorite place to be. I’ll bet you Fernanda was rubbing you, trying to sing, “Twinkle Twinkle Little Star,” but she didn’t know the words, so she had to Google them on her phone. I love that story. She watched you because she knew that I needed the rest and I wouldn’t sleep if someone wasn’t keeping their eye on you.  She knew when it was her time to go and I think she left around 2:30 a.m. She kissed us goodbye and left the two of us in the room, alone together. She knew that it was time for you to go. She knew that we needed to be alone. She knows so much. I remember watching you. Your little breaths got so shallow. I remember The Ryan House nurse standing over us and how fast my heart was beating. I looked up at her and asked if you were gone. She told me not yet, but it was going to be soon. I remember thinking how unfair it was that my heart was rapidly beating, yet yours was getting ready to stop. I kissed you all over. I told you I loved you and whispered to you, “Come on baby. Come with me. Let’s get out of this place.” I asked her to go and get your Daddy. You waited for him to come in and kiss you goodbye. Then your little heart just stopped. Just like that. I go over this night in my head, at least 10 times a day. I pray that you know how much I love you, I pray that you were not scared as I worry about that so much. I still can’t believe you are gone and that I am still here, living this life, without you.
I had a mini freak out today. Panic took over after I dropped your brothers off at school. I knew I could not go home to an empty house. I went to Starbucks and sat with my computer and went through emails and paid bills. I emailed somebody at www.spirithoods.com and told them about you and asked them if they had ever thought about donating their amazing “hoods,” to kids with Cancer. I told them how much you loved yours and how many cancer kids would comment on it, but probably couldn’t afford to buy one. I asked them to consider donating some. I actually got a response pretty quickly and I was very impressed. I’m working on them and I have a feeling they won’t let me down. Could you imagine how many smiles their Spirit Hoods would bring to the faces of kids everywhere. Hospitals are notorious for being cold. Remember how much we loved wearing ours together. You looked so cute in yours. I could have gobbled you up and am sure I tried. I miss your little face so much.

One of our favorites met me for a bit today. I was a wreck, but tried my best to remain calm. I don’t think I put on a very good show. It’s fine. I have never been one to pretend with our lovie. No reason to. I talked about how this date is hard for me every month. I tried not to cry and just listened to the words that came my way. I tried to keep an open mind and to not be angry at the fact that you are not here. Our lovie sat and told me that you are not really gone, that you are everywhere. That you will never be gone. I know this deep down, but it does not take away the pain of your physical self not being here. It does not take away the pain of not being able to hear your squeaky voice or look at your beautiful face. Our lovie asked for a smile. I refused as my smile seemed nowhere to be found today. I’ll bet you I went the whole freaking day without smiling. And I always smile for our lovie. That’s how you know it was a really, really, bad day. I know you know. I know it’s on my really bad days, that you find some way to make me feel a little happy. I found that today when I went to visit my new friend, Katie, at her boutique. Her kind heart and kick ass music playlist made me feel good. I joked with her that she must secretly have access to my iPod because I swear she always has my favorite songs playing while I am in her store. Tom Petty’s “Last Dance with Mary Jane,” was on when I was telling her that. Oh, Tom Petty…. how I love thee. And Miss Katy…. this new gorgeous girl you have put in my life, Ro. Thank you. I can tell she is going to be a big part of this new, strange, life without you. Another one of your little gifts. Thanks baby.

The rest of the day was spent in therapy. Therapy with your Daddy and than I went off to therapy alone with Sarah. I felt like my head was spinning most of the day. Than I decided that it should feel that way, as I have many hats that I am wearing right now. I am not sure if this is a good or bad thing; but it is where I’m at. You want to hear all of the hats I’m wearing? I’ll tell you.

The Maya Hat- Trying to take care of me. Whatever that means.

The Ronan Hat- Trying to connect and still trying to take care of you. It’s all I want to do.

The Mama Hat- Trying to be a good Mama to your brothers. I’m naturally a good mom, so this is not hard. But it still takes a lot more effort than it used to.

The Wife Hat- Trying to be a wife to your Daddy. Failing.

The Therapy Hat- Sarah, Dr. Rachel, Dr. Joanne, and Dr. Beth with Liam and Quinn. FUCK. That is a lot of therapy, but so necessary.

The Friend Hat- Trying. Failing. I miss my friends.

The Foundation Hat- My busy work. Trying to get everything figured out. I like this hat. It gives me HOPE that I am keeping  you alive; even though you are gone.

The Not Slitting my Wrists Hat- Want to. Everyday. Everyday I survive without doing this is a fucking miracle.

The Grieving Hat- I’m doing this. In my way, alone. Or in the presence of therapists. I’m working hard to do this. I don’t want to stuff away any pain because it will all come back to haunt me later if I do.

So baby. What do you think about all of that? That’s A LOT of stuff. Remember back in the day, when all we had to worry about was naps and grocery shopping? That life does not even seem real anymore. I feel like I’ve been living this life now, forever. What a stupid, spoiled brat I was. I’ve got a lot of making up to do for being such an ignorant human being. I’ve got a lot of work ahead of me. It’s fine, baby. I’m not scared. I know you are going to help me, therefore, I can do anything. Fuck You, Cancer. Right, Ro?

My new friend, Heather, also stopped by for a visit. She is the Queen of random, surprise drive-by’s. I just happened to be home and was so glad to see her face. We sat in the kitchen today and talked for awhile. She is another one of those peeps with such an amazing heart. She always seems to appear when I need  a bit of cheering up. When I need a little kick in the ass to remind me of how strong I am. She told me that she tells someone, at least once a day, that I am going to do for Childhood Cancer, what Lance Armstrong has done for Cancer in general. WOW. What a compliment. Talk about picking a girl up, when she is down. I took a minute to think about what she told me. I started to get overwhelmed, but a calmness washed over me. I think she is right. I think she is right because I have you to fight for and the strength you give me will help me change things, in a drastic way. Everything I used to be scared of, Ro…. no longer exists. I am here, on this earth, to change things for you. Because you know that you did not deserve to die, nor does any other child suffering from Cancer. Somebody has got to take this fucker down. Super Ro to the rescue!!!!! I know we can do this, little man. Heather, knows we can do this. She lit up like a little Christmas Tree when she was telling me this today. It was so stinking adorable. It was so beautiful. It was so you.

Oh, Ro. Nice song pick tonight as I was just getting to end this post. Seriously! That just got you the BIGGEST SMILE! I love you to the moon and back, baby. I hope you are safe. You are so right, this is absolutely not the end.

THE BRAVERY

Tell me
Come on tell me what you can
Even as you wait for death your wiser than I am
Tell me what does it mean to exist
I am not a scientist I must believe there’s more than this
And I can not accept
That everything that’s real
Is only what our eyes can see
And our hands can feel

[chorus]
Not even earth can hold us
Not even life controls us
Not even the ground can keep us down
The memories in my head
Are just as real as the time we spent
You’ll always be close to me
My friend
This is not the end

I see
I can see you’re still afraid
Weathered like the silver moon, on you even fear looks good
I wish, I wish I had some words to give
But all that I can think to say
Is I’ll be with you everyday

[chorus]
Not even earth can hold us
Not even life controls us
Not even the ground can keep us down
The memories in my head
I just realized the time we spent
You’ll always be close to me
My friend
This is not the end

La la la la la
This is not the end
La la la l al la
This is not the end

I don’t care
I don’t care what you believe
As long as you are in my heart
You’re just as real as me
Maybe
Maybe even more
Someone who’s touched so many lives
can never, ever die

[chorus]
Not even earth can hold us
Not even life controls us
Not even the ground can keep us down
The memories in my head
I just realized the time we spent
You always be close to me
My friend
This is not the end

You are my God, my Heaven, and someday, my Peace

 

 

 

Ro baby. Hi. I’m still here. I’m going to say, unfortunately, because that’s what I’m feeling at this time. As much as I talk to you and ask you to take me with you…. I don’t think you are going to. You want me here, on this earth, and I have to do my time. I feel like I’m trapped in a prison cell and nobody is ever coming to free me. And I know you know why. It’s because nobody can save me, but myself. I have to learn how to set my soul free, to be reborn again because of now, I still feel like I am walking around dead. I cannot go on like this forever which is why I am forcing myself to do things that I really don’t want to do, but I know if I don’t, everybody loses. Even you. And that is not acceptable in my book because I have so much making up to you to do. I will tell you I’m sorry everyday, 20 times a day, for the rest of my life. I’m sorry for so many things. But most of all, for not being able to save you, when I promised you I would. I will carry the guilt of that around for the rest of my life.

I’ve tried to do a lot this week. Physically and mentally. I have to start trying to fix myself, bit by bit.  I’ll never be fully repaired, but I hope to find pieces of myself here and there and put them back together. My pieces will never fit perfectly again, so I’m going to have to relearn how to live with them, as shattered, cracked, bruised and battered as they may be. I have to learn how to live with this pain now, if I am going to stay on this earth.

This week is almost over. I’ve done a lot. A lot of therapy. A lot of mommy things. A lot of being productive. I want to say fuck it all and not do any of this. But I have this fire that lives inside of me now that refuses to let me be quiet and give up. I am pissed at the world and have too much passion from the pain of losing you. I’m not giving up. No matter how many doors I have slammed in my face. I deserve answers, I deserve to hear I’m sorry from the fucking medical world that failed us, I deserve to create changes in this fucked up world of childhood cancer. I deserve to help others. It is what you would want. You would want me to find a reason to go on. You would want me to break down every fucking door to get there. I will make you proud of me. I know how much you loved me. I know you loved me more than anything or anyone. I know you will always be proud of me, which is why I refuse to give in to this hell that is now my life. And FYI….. Fuck this Zoloft. I’m done with it. I’m not taking it anymore. I know I’m going to be told to wean myself off of it, but too bad. I’m stopping it cold turkey. Is that dangerous? Maybe. Is it going to kill me? I doubt it. I’ve made my mind up about this and you know how I am once I make my mind up about something. I don’t want to be on a medication because my feelings about losing you are too intense. I needed this medication during your treatment, when you were still here with me, because I took care of you, 24/7. You are gone now. And I am done with this crap. I don’t want to live a life of being on meds. I want to be cleansed. I want to get back in touch with my reality, without being medicated. I’m strong enough to do this. And if I’m not, I will reevaluate the situation. I’m not ready to give up my sleepy meds yet. The Ristoral that I have taking makes me less insane. I’m sleeping a little better. I’m not saying crazy things in the middle of the night to your daddy like I was before. That drug is hardcore and really messed with my mind. I don’t like to feel out of control and that is how I felt when I was on it. I’ll admit for a while, it felt kind of good because it was an easy escape and I didn’t have to be responsible for the way I acted. I could just blame it on the Ambien. I don’t want to have to blame things for my behavior. I want to be able to blame myself, not some drug that is effecting my sleep and my life, so deeply. I still need the Ristoral though. I’m not even close to being at peace with anything and I know that trying to sleep on my own is torture. The lack of sleep that comes with all of this is something that I cannot handle at this point. I need sleep. I need a break from everything and sleeping is the only break I’m going to get.

At this point in my life, I feel like I’m on autopilot. I think I’m back in shock again. I talked to you after my run tonight and I didn’t even cry. It was strange as I am always able to cry about you. Not tonight. I sat there, in the dark, on a bench, and talked to you but no tears came out. I feel numb. I feel like I don’t want to feel anything so I am going to just shut all of my feelings down. This is when I decided to screw the Zolfoft. I think this may be part of the problem. I want to feel and not feeling anything tonight, scared the shit out of me. I don’t have normal feelings at all. Happiness, excitement, and hope are not part of my world anymore. Feeling love from others feels foreign to me as if I’m not worthy of it. I feel nothing. Today, I was able to put on my FUCK CANCER game face and put together a plan of attack. I was able to figure out what steps I need to take in the right direction to make a difference. Baby steps, but I have somewhat of a plan. I have an idea for a plan of one of the many things I want to do. I have to do because I am so angry about the lack of knowledge we were given when you were diagnosed. It is unacceptable and cruel. And fucking bullshit. I know that things take time and baby steps are necessary. Baby steps are a start in the right direction and I know they will lead to bigger and better things. Good thing I am a patient person by nature. Patient but passionate. I think those things will both work in my favor.

I have so much more to tell you. About the amazing lady I saw from the MISS foundation this week. For the first time since losing you, I felt like maybe, just maybe, I can survive this. I can change things. I felt this way because Dr. Joanne may be one of the most incredible souls I’ve ever come into contact with. Instant connection not to mention she is brilliant. And compassionate. She’s taken her pain, educated herself on grief, and turned it into an amazing organization. She inspires me. I need to be inspired right now. I need to see that great things can come out of something so tragic and awful from losing a child. I need to know that I can become a better person through all of this and make a big mark in this world by helping to find a cure, by helping other families, by giving all I have to give. I am going to take everything I used to save you, and throw it into helping other people. I know I’m not ready for this just quite yet, as I have some things I have to work on myself. I have to make sure your brothers are o.k. as they need me more than ever. I cannot let them down. I have to do this for you. They deserve to have the best life possible. I have to be a part of making that happen. I cannot just check out, Ro. It’s a lot of pressure but I think I can do it. I promise to try my hardest.

I’ve worked out everyday this week. Hiking in the heat, boot camp, running. It all feels good. It makes me feel alive for about an hour which is better than nothing. It makes me smile when I feel the sweat stinging my eyes. It makes me realize for a small moment in time, I can feel again. It’s not always good, but it’s better than being numb. I don’t want to walk around this life like a robot. I want you back more than anything but I know that is not going to happen. But I also know that I will see you again. We will meet up in our next life together and it will be even more amazing than this one. I truly believe that. Our bond and connection is too strong for that not to happen, my love.

That is all for tonight. I love you to the moon and back, baby boy. I hope you are safe. Please watch over all the beautiful souls that love you so much. Please visit them in their dreams. You are not ready to visit me yet, as I am too consumed by my pain. You will know when you are ready to see me again, to let me know you are safe. Please keep your brothers safe. Thank you for keeping Fernanda safe. I know that was you. I know you are part of her soul. I’m not thanking God for anything anymore, Ro. I’m thanking you. You are my God. You are my heaven. And someday you will be my peace. I love you so much. I miss you every second of the day. I promise I won’t let you down.

Sweet dreams my little devil.

xoxo