Secret Bad-Ass 1 a.m. Cancer Fighters… (says Rita)

Ronan. I didn’t sleep a wink last night. How could I with all that is going on? I didn’t sleep last night and I spent all day today, running around like a chicken with it’s head cut off. No time for sleep when too many things are happening. But for once, it’s all good things. As in things that I know you are behind as I am feeling you everywhere. This could only be you, working so hard to help me with everything I want to do in this childhood cancer world.

I took your brothers to Dr. Rachel yesterday. It was the first time Liam has seen her. It’s Quinn that I have been having go. I left Liam with Dr. Rachel for a half and hour session. As soon as she opened the door, I saw the look on her face and my heart dropped to the floor. She mouthed the words, “OhMYGod,” to me. I went in to sit with Liam and her to talk about what it is, that took place. She said that Liam has so many feelings about you, that he doesn’t know how to talk about or how to let out. She said he cried a lot and needed a lot of hugs. This as a mom, killed me. It made me feel like the biggest failure. Liam snuggled up to me and let me hold him while he just cried. I kissed his head and told him how proud I was of him for talking about everything. He then left the room so I  could talk to Dr. Rachel alone about what went on. She said she could not believe how fast he opened up to her and how he just let out all of his sadness. I told her how I can see him holding it in, but how I cannot get him to let it out with me. She talked about how he needs a safe place to come, to talk about things and how next time she would like a whole hour with him. I totally agreed. That lady, has a gift with your brothers. It’s crazy. I’ve never seen them both open up so quickly to a stranger. I am so glad we found her and she is a great fit for your brothers. I think this therapy is going to help them so much. I can’t have them keeping this all inside. They need to talk about everything with an outsider who can help them navigate this, in a way that your dad and I cannot.

It’s so late. I honestly have the best friends in the world who love you so much. Who gives up a Friday Night to sit at our kitchen table for 6 hours to work on foundation things with me because we have so much to do? My friends who love you so much. Melissa sat in your seat tonight, at the dinner table. I was so glad to have her there. You have only brought the most beautiful people to us, Ronan. I am amazed every single day at the people you are surrounding us with. It’s such a powerful thing to watch.

It was Ezra’s birthday today. Or now, yesterday I guess. I called his mom to make sure she was o.k. Of course she was not. I let her cry on the phone to me and I cried with her. I then pulled it together to tell her how amazing she is and how she needs to stop being so hard on herself. She sounds like someone else I know. Robyn, I love you with all of my heart. I PROMISE you, together, we will fix this disease for these kids and families. I swear to you with everything that I have left that childhood cancer is going to change. We are going to help to save so many lives with our hearts, dreams, and minds, with all of Ronan and Ezra, guiding us every step of the way. I’m sorry today was so hard. I wish I could have been with you. But I am so proud of you for still dancing at the end of the day, after all you dealt with today. I hope you get some sleep tonight and dream of your baby boy.

This is all I can write tonight. Poppy! (insert british accent here) is growing like crazy. I cannot believe I have a little one inside of me, growing away. I still don’t believe it’s real. Tonight, I don’t believe a lot of things are real as too much has happened. I woke up and pinched myself. And for the first time since losing you, it was because of all the good things that are happening. Not because of the bad.

I miss you. I love you. I hope you are safe. Sweet dreams, baby doll. You are my best friend forever.

P.S. To my loveliest of loves tonight. Thank you for sitting with me for 6 freaking hours on a Friday Night. I am so thankful for you in the most beautiful ways. I could not dream up better friends.

xoxo

A Birthday, Smiles, and Sparkles

Ronan. I smiled today. A couple of things made me smile and it felt o.k. I started this morning by running with Samya. I’m having a hard time, finding my love for this running thing again. I am still trying to get over that mental block that I seem to be having. I asked Samya if we could not run on the Canal this morning. She sweetly agreed to trust me and I picked out a different route for us. We ran up some hills, through some neighborhoods, and past Camelback Mountain. It was much better than the dirty, dusty, canal. After our run I came home and did the usual routine. The house was so quiet as everyone was still asleep. I hopped in the shower and went through the list of things I needed to get done today. After the shower, I was thankful for the quietness, as I had something important to do. It is Fernanda’s birthday today. I bought her the same locket necklace that Macy got for me in San Diego. I’ve had it for a while and knew what I was going to do with it. I got out the glue and spread a think layer on the inside of the locket. I took your ashes into the dining room and sat you on the table. I opened up your Urn, dipped my hand into you, kissed you and told you to please take care of Fernanda, for the rest of her life. I cried and smiled at the same time, knowing that you wouldn’t let me down. I let the locket dry, wrote her a little card and sealed it with a kiss. I felt as though you were watching me today, helping me with this decision as I know it might seem strange. But it felt right. And I have been thinking about this for a long time. She was with you, right before you passed away. I knew this would be the most beautiful, special gift to her. And it was just as special to me; to be able to give her such a thing. You know I would give her the moon and the stars above if I could. The gift of you is better than anything in this world. I couldn’t think of a more perfect way today, to let my friend know how much she means to me.

I dropped L and Q off at school with the usual goodbyes, I love you’s, see you at 3:15, please try your hardest today. They make me proud everyday. I watched them in the rear view mirror, as they walked into school. I looked back at your empty seat in the car, expecting to hear you yell goodbye to them. It kills me everyday to look back there and not see your sweet little face. I drove to Taylor’s where I told Fernanda I would meet her for breakfast. I sat and ordered a coffee and talked to the waitress about her amazing Amber colored eyes. This darling girl waits on me a lot when I’m there. Her eyes, are stunning and I always tell her so. You know what a sucker I am for pretty eyes. Fernanda soon arrived and I gave her a Happy Birthday hug. We sat and caught up before we ordered our food. I told her to close her eyes as I stood up to give her our birthday gift. I took out the purple jar of glitter that I had in my purse and started sprinkling it all over her head and told her it was from you. She was laughing, and crying, and was covered in all things Purple and Sparkly. I laughed while doing this today as I thought of you and knew how much you would have loved to be a part of something like this. I then gave her the locket of you. I cannot remember what Fernanda said, but there were a lot of tears involved and a lot of words flying out of her mouth. I get easily distracted by her beautiful Spanish accent and her words just kind of flew over my head. I know she told me that it was the most special gift she has ever received, how much it meant to her and some other things. I heard her words, but most of all, I just felt. I felt something else than pain. It may have been a feeling of happiness. Just a tiny bit. The tiny bit of happiness that I now cling to like I am holding on to for dear life. Because I am. I am holding on for dear life, that happiness will once again, be a part of me.

After I left Fernanda covered in glitter and my lipgloss all over her cheek, I ran home to take care of a few things. Lots of things. Lots of important but not really important things that fill my days. There are so many of those things now. All the things that come with the responsibility that I cannot just abandon because I just don’t care anymore. As much as I don’t care, I still have a responsibility to take care of things around here. Our house is so freaking clean and organized that I don’t even have laundry to do, Ro. Pathetic. I only wish that I were going crazy because of the millions of messes that I was cleaning up after you. You drawing on the walls, you spitting your food out across the table because you knew it drove me crazy, you climbing up the refrigerator and shoving food into your mouth, you taking a bath a pouring water all over the sides or splashing so much that I would have been drenched from head to toe. I wished for those days back, so badly.

I drove out to see Dr. Rachel today. The therapist your Daddy and I see. He couldn’t make it, so I went and saw her alone. It was good. It gave me a chance to fill her in on the life before I married your Daddy. A little bit of background. She wants to know why I’m so hard on myself. Where that stems from. She wanted to talk about the guilt that I seem to be consumed with. She wanted to talk about a lot of things but also said she didn’t want to undo any of my other individual therapy that I am doing. She respected my boundaries which I very much appreciated. I have a little bit of a guard up with her and I’m not sure why. I guess it could have to do with the fact that your Daddy and I both see her. It was glad to let her in a little bit. I would like to be able to let her in more, but I think it’s going to take some time.

Lots more to say tonight, but I’ve got an early morning run calling my name. Ro. Please help me out. I saw you on my run this morning; that little hummingbird that decided to show up, right when I wanted to stop. I didn’t stop. I hope you’ll be around tomorrow. I’ve got to get my running Mojo back if I’m going to kick this P.F. Changs Half-Marathons butt. Any extra push you can give me tomorrow would be great.

I love you to the moon and back. I miss you more than anything in the world. I am so lucky you were mine, for as long as I had you. You will change my life in ways that I’m not even aware of because I am stuck in this thick fog which you will help me out of, when I am ready. I know this. G’nite sweet boy. I hope you are safe. A million kisses to you. I’ll bet you miss my kisses so much you wouldn’t dare tell me, “IT’S NOT A KISSING DAY!!!!”

I love you, my not spicy, monkey boy.

xoxo

Ro Baby Steps

Ronan. The past couple of days, have wiped me out. Mentally and physically. I cannot believe tomorrow is Friday. Where did this week go? I blinked and it was gone. I tried to tell Tricia today, what I have been up to. I couldn’t even remember. Still waiting to find that memory of mine that seems to have disappeared. Good thing I write to you at night. Could you imagine if I did not have this blog, to keep track of everything that we have been through/done? I would not be able to remember a thing. I was trying to give Dr. Joanne, an idea of the timeline of some things that we went though. I could not remember the months that we did your treatments and traveled with you to save my life. That is one of my homework assignments this week. To create a timeline of events for her. I also get to write that letter to Dr. Kushner that I have written, a million times in my head to him and bring it to her. Should be an interesting session the next time I see her.

I woke up today, tired. I took your brothers to school and came back home. I crawled in bed. Fernanda came by and I told her I was hiding. She told me it wasn’t allowed but crawled into bed with me anyway. We snuggled in bed together and talked about a lot of things. We talked about you a lot. We held each other and she just sobbed, really hard. I held her and let her. I cried too, but not like she did today. I’ve been crying so much I guess my body just took a little break and let her do some of the crying for me. I told her that I am going back and fourth between two things. I am either thinking that you were never real, you were never mine. Or I am thinking none of this is real and you are still here. My mind has been furiously playing tricks on me for weeks now. I cannot remember what is reality or what is not. I guess it’s in protection mode again. Maybe that’s why I have not been getting any little signs from you. It’s been awhile since you changed my radio station.

Fernanda left our house with a couple of chores to do for me. We are on a mission to change the face of Childhood Cancer. We have recruited 2 of our lovelies. Tricia and Stacy. We are putting together a game plan as far as where we want to start. We are meeting in a couple of weeks to go over our ideas and to make sure we are all on the same page. We all seem so scattered right now. We need to come back together so we can work with each other on what it is we want to do. Baby steps are beginning. Ro baby steps.

I left the house soon after Fernanda. I ran some errands. I came back home and decided to skip my Inferno Hike today. I threw on my Purple Running Shoes, just for you, and decided to go on an Inferno Run instead. This is a new one. This is how you know, I’m truly in HELL. I hate running in the heat. I used to complain about it so much. I was determined to do it today. It was awful, but in the best way possible. I only made it about 5 miles. I could hardly breathe due to my throat being so dry, the entire run from the heat. Oh well. At least I am lucky enough to be alive, right?? Yeah right. So lucky. It’s just where I want to be. I have to get my butt back into running though if I’m going to do our half marathon in January. I’m going to do that thing and make it my fastest time ever, just for you.

After my Inferno Run…. which I did not die on, but I wished I would have… I came home and showered. I had to meet your Daddy at Dr. Rachel’s office for our therapy together. I don’t know why, but I always feel so peaceful sitting in that room with your Daddy. I tend to be a little more quiet, calm, but always sad. I listened to your Daddy explain your treatment path to her and why he knows we did everything we could do. Why we made the decisions we made and if we had chosen differently, he still thinks the outcome would have been the same. He’s in a good place with the things we decided for you. I am not. But that is not a reflection on your Daddy. It is a refection on me and the way I am beating myself up now. I could have 10 of the best doctors in the world, standing in front of me, telling me we made all the right choices, and I still would not believe them. I’m convinced if we would have made the right choices, you would still be here. So in my mind; I failed you. I killed you. This is my fault because I am your Mama and I should have been able to protect you. I should have known that you were dying right in front of my very eyes those past couple of months. You were my child, my soul-mate, my other half. How could I not have known, that you were dying? That makes me the worst Mama, ever. This is where I am now and I don’t need anyone to tell me differently. I don’t need your Daddy to convince me that this is not true, because it is not going to work. I have to come to a place of acceptance, by myself.

I like Dr. Rachel. She is good for the both of us, but she is really good for your Daddy. He needs to be talking to someone, other than me. He went to see her without me yesterday. I am thankful he is being open to that as I know it is not easy for him. He is good at not dealing with his things and pouring all of his energy into taking care of other people which is just not healthy. He needs to deal with the sadness that has come from everything we have been though. Otherwise, it is going to eat him alive later on in life. We cannot have that. Your Daddy is such a strong man, Ro. But he needs to realize that he doesn’t always have to be. This is why Dr. Rachel is good for him. She is good about letting him know this. I’m thankful for her.

We came home to the boys’ and my dear friend, Melissa who had picked them up from school for me. They got to have a play date with her 2 kids which they always love. Your Daddy took the boys to play basketball and I stayed home and “cooked,” dinner. Does taking food and throwing it on the grill count as cooking??? It does to me. I have not cooked in so long. I miss it, but the thought of cooking food, makes me sick to my stomach. Cooking food, sitting down to dinner, with your spot empty kills me. I did it tonight and it was just sad and lonely. I hated every second of it. I hate every second of everything right now.

I love you. I miss you. I have a wicked headache and it has nothing to do with the 100 degree heat I ran in today. Nothing at all, I’m sure. I love you. I hate this. I hope you are safe, my sweetest blue eyed boy. G’nite Ro baby. Love you forever.

xoxo

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