A death day and a birthday

 

 

 

Ronan. May 9th came and went. It was a gut wrenchingly hard day. I did my best. I did all I could do. I did not die. It was a rainy day, as it should have been. I got up, showered, dressed. I went and had lunch with your daddy and brothers on this awful, awful day. We had planned a day of hiking. Just as we finished lunch, your purple balloons arrived. 5 of them. Sent by the most thoughtful board members and little intern on the planet. The one’s who put so much thought and effort into sending us off, on this trip, that we have had gifts to open every single day that we have been gone. All things inspired by you. Things that have made us laugh, be silly, and wild and free. Things that have made us cry, like the 5 purple balloons. Who thinks to have purple balloons sent to our hotel, so we can let them go for you because they know we are in a small town, and wouldn’t be able to find them anywhere? My board members. My intern. My sisters. My family. This is why they are the one’s I trusted with your candy cart for Phoenix Children’s Hospital for your birthday. This is why they sit on your foundation board. Because they know this is not just business. This is about unconditional love, thoughtfulness, and helping when help is needed most. They know this without me having to say a word. This Ronan, is the truest form of unconditional love. This Ronan, is why after all of this, I still think I am lucky and blessed. So very blessed even without you. I know these little blessings are all gifts from you, to keep me going. Thank you so much. I don’t know what I would do without them.

After lunch, I grabbed the 5 purple balloons and hugged the front desk girl and told her thank you with tears streaming down my cheeks. One of my lovely little board members, filled her in on the reason for our “vacation.” She knew the reason for us being there. She looked at me and said, “You are welcome. Please, let me know if you need anything.” I told her I would. We headed out for our hike. We drove to somewhere that was recommended to us. I let your daddy navigate and take us to our destination. I sat, numb, and totally zoned out. I tried to let myself get lost in the beauty around us, but it was impossible to take me away from the world I live in, without you. Once we arrived, we scoped out the trails. We ran through the woods down towards the water. I carried your 5 balloons. We all stood together and each of us, took a purple balloon. Your daddy and I held yours, together. We let them go and watched them float away. We clung on to each other, and I buried my head into your daddy’s shoulders. We stayed that way for a while. Your brothers didn’t really know what to do as they seem to be pretty unfazed by everything that is going on around us. As 8 year olds should be. We went on a long hike through the woods. Every stick I saw, ever rocked I threw, every mud puddle I stepped in, was a slap in the face to me. It hurt, so much. It is so wrong that you are not here, running through that forest, with your brothers like you should have been. You would have loved every second of our family hike. It was the most exhausting hike of my life. It wasn’t physically hard. It was the mental part that I struggled with. Hiking on the day that you died, because you died, because nobody knew what else to do. Talk about a mind fuck of a day.

I heard about the storm in Phoenix on your death day, Ro. A spicy storm on May 9th that could have only been caused by you. I have no doubt about that. I loved hearing all about your storm. Nobody could believe it. The people that love you the most, could. You made it pour down on me, in Maine, and you proved your point with your spicy little storm in Phoenix as well. You are such a little badass.

I don’t remember the rest of the day or night. All I know is I went to sleep, exhausted. No Ambien needed. I have not taken that, since the first night we were on our trip. I have slept alright without it.

I have been so preoccupied with your death day, that it is as if your birthday has come up from nowhere and knocked me down so hard on my ass, that today, I did not know if I could get up. I did. I mustered up the energy to go out for a while to explore our new surroundings as we switched locations last night. A new destination was a good change of pace. We explored for a few hours and then headed back to our hotel. I had a raging headache probably due to all the crying I had done. I crawled in bed while your brothers played outside and your daddy worked. I needed to just shut down for a couple of hours, so I did. I got up when I got a text message from one of our lovies here. She was close by our little town and came by to see us. The two of us went out and grabbed a quick bite to eat. She knew I was having a hard day. She knows first hand, all too well about this life. We quietly talked about all things that two mom’s should never have to talk about. Kids getting cancer. Kids dying from cancer. The how’s, the why’s, the unfairness of it all. I spent the hour at dinner, looking across the table at my friend who has the same eyes as mine. One’s filled with so much pain, that it is palpable. But there is a fire there, too. I see her son, in her eyes, every time I look into them. It gives me strength. I left her still feeling pretty sad, but feeling better about your upcoming birthday. I left there, feeling like I could get through tomorrow, without you.

I came out of the restaurant and I had 16 text messages on my phone. FUCK. I had forgotten about the little insane text message party I had with Rita, before going to dinner. The one where I was laying in bed, sobbing, and she just happened to check in on me. The one where I said I wanted to die, and how many Ambien would it take to overdose? She responded right away with one could not overdose on Ambien, but instead they will lose all control of their bodily functions and shit themselves. Well, that sounded like a shitty plan. I would not like to do that. I then asked her the best way to commit suicide, and told her I was googling it. I was. But not because I wanted to really die; mostly out of curiosity. Rita told me she was not playing this bullshit game with me and gave me the sternest text messaging spanking I’ve ever gotten in my life. I threw my phone in my purse, forgot all about our conversation, and headed out the door to dinner. Once I saw my phone, on text message overload, I remembered what had gone down. I quickly responded that I was alright, so sorry, and I would call her in a few. I got home and called the two people I needed to check in with.

Your Fernanda was first. Ronan. Do you know what she did? It is unbelievable. I left for this trip, and I pretty much left my lovely little board members in charge of Ronan’s Day of Love at PCH. I knew I couldn’t be there, so I left the ones I trust most in this world, in charge of it. I knew they would not let us down. I know how hard this was for all of them to do; but they didn’t blink twice when I asked them. They were honored, to be honoring you in a way that meant so much to me. We have planned for a couple of months now. The candy cart, the balloons, the Star Wars characters to visit the kids. Who would be there, helping. A day of love at PCH, all inspired by you, to make others smile and happy and to forget about the fact that they are in a hospital, fighting this beast that no child should ever have to fight. I had an idea about what it is I wanted for your candy cart, but I gave Fernanda free rein to do whatever it is, she wanted. What she put together, ended up being a freaking masterpiece. I don’t know how she did it, but she did. She spent all day Friday, “Pimping your Wagon,” as she said. She had some great helpers, this I know. Thank you, all. So much. Ronan’s purple candy wagon, complete with an iPod and speakers, for the playlist I made, not to mention a secret hidden zombie underneath, is something you would have gone crazy over, Ronan. It was everything you. It was all you. I could not have done a better job myself. This is the reason, your Fernanda wears your ashes that I gave her, around her neck. Because she knows you inside and out. Because you are her Twinkle Twinkle Little Star. Forever and always.

I called her, I broke down and cried, I told her thank you over and over. I listened to her voice and let her put her little spell on me that she always does. The one where she calms me down and takes me away to a world where only you and I exist and she reminds me to remember this. That you are still here, with me. That you are mine and I am forever yours. Nobody else can do this for me, but her. I hung up with her feeling a little better. I had to call Rita, next. Our very long conversation can be summed up best by this.

Me: I am so fucking sorry. I should not have texted you that I want to kill myself crap. That was not o.k. I thought you knew I was kind of joking. You know me. You know I’m not going to do anything.

Her: You are a mother fucker. You are not allowed to do that to me, set the phone down, and not answer it. EVER! I did not know if you were serious or not. I thought you were really dead. I thought you were really dead, but you know what Fernanda told me? She told me this. “Listen, Rita. I believe Maya wants to die, everyday. But not by her own hands. Do you know how I know Maya will not actually do anything? Because she wears lipgloss. Because she gets manicures and pedicures. Because she puts on make-up and fixes her hair. Because this shows me that for all the pain she’s in, she has a shred of self-love left. She takes care of herself by doing these things. We can all be concerned if she stops showering and wearing lipgloss. Until then, she is alright.”

Rita and I were both in stitches. Only Fernanda could rationalize my madness by saying the key to me not taking my own life, is because I wear lipgloss. Only Fernanda, could make it make perfect sense because it absolutely does. I told Rita, I was sorry again. I truly was. I didn’t mean to make her worry. I was in a bad place and I was venting but it still was not right to do. I know I can be a jackass sometimes. I am thankful she loves me enough to forgive me. I fell asleep last night, cuddled up to your Liam. I was missing you extra much. He felt extra soft and snuggly to me. I soaked him in for the rest of the night, knowing what I had to wake up to. But it was another Ambien free night. I was a good girl, for you.

I woke up, feeling sick to my stomach. Ronan’s 5th Birthday day. I didn’t know what to do. I threw on my clothes with your daddy still sleeping and your brothers were just starting to stir. Out the door for a run I went. A little run that turned into a 2 hour run, partly due the detour I took, to sit in the middle of the forest to sob about you, and partly due to the fact that I got lost. Lost on your 5th birthday, without you. Seemed pretty fitting, actually. I ended up finding my way home, Ronan. I always do.

I made it through the day, thanks to the help of your daddy, brothers, and friends. The 4 of us had a low-key day/night. We all wore purple, from head to toe. I played Lacrosse out in the big, grassy lawn with your brothers. There spent the day laughing and giggling as they should have. I have yet to go on to Facebook but I swear it seems as people all over the world were out doing crazy, kind-hearted things for you. I am moved beyond words by just a fraction of the stories that I have heard. They fill me with a bittersweet hopefulness that I never wanted, but now it will always be mine. I will treat this as a gift. I have no choice. This life I live now, Ronan… is one filled with all things beauty and pain. They will always go hand in hand. I have to learn how to let them work together, while being respectful of one another. It’s a heavy-hearted job but it is my job to do. After today, there is the most amazing proof that I am not doing this alone. So many of my family, friends, ex friends, old friends, new friends, and strangers are in this for the long haul, too. Look at all you’ve done and it’s only been a year, sweet boy. Imagine what we will do, in this lifetime together. So many amazing things. I know this.

To everyone out there, who spent today, honoring my Ronan by being extra kind, spicy, loving, honest, brave, caring, wild and free. Thank you. So much. You are getting me through my darkest days. You are making a difference. You are making him, so very proud. I love you all. Without you, this would not be happening. It is because of your loyalty and love that this world is going to change. Thank you for believing this in your hearts and souls and for being grateful for what it is you have. No matter how much or how little because you all get what truly is important. LOVE and HEALTH. That’s it. Those are the only two things that matter in life. If you have those two things, you have everything.

One last little shout out tonight, Ronan. My lovely little board members, my intern Rissy, and sissy, Liz. I know today was so hard for all of you. Words cannot even touch how thankful I am. You took Ronan’s birthday and made the day of so many parents, kids, siblings, nurses, and staff at Phoenix Children’s Hospital. You made them smile. You gave them a good day full of warmth and love. That is priceless. You all are priceless. Thank you for all of your hard work, love and turning today into a day that was all about Ronan, without it having to be, “All about Ronan.” I am blown away at how perfect everything turned out, but not surprised. Just very, very humbled and grateful. I love you all, so much. I know he is so proud. Thank you, thank you, thank you.

Alright my Ronan. I need to end this now. Happy 5th Birthday. You would have been the most beautiful 5-year-old to walk this planet. This is beyond fucked up. This is beyond unfair. I am so sorry. I made one wish for you tonight. That I of course, hope you are safe. I love you to the moon and back. I will fix this. I will make this better. I won’t break my promise to you. I promise on my life, that I choose to live. Because this living thing is a choice and I am not going to waste it. I will live for you. Until you are ready for me to be with you, once again. I love you. Sweet dreams.

xoxo

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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

“I’ve got nothing!”

Ronan. The love of my life. My baby doll. I missed you today. So much. As soon as I woke up, I hopped in the shower. Your brothers were still asleep and I let them stay that way until it was their turn to shower. We had a big day planned for us today. No sitting around the condo, breaking up fights, listening to them saying they were board at the beach. After we gathered up our things we headed off of this island, with a pit stop at Starbucks, of course. Venti Vanilla Non Fat Latte for me please. Two tall Black Iced Teas for Quinn and Liam, with extra sweetener. I also grabbed them some bagels for our road trip and we were off! We headed to Newport, which is about an hour and a half North of Coronado. The boys were happy in the back, watching their “Smurfs,” DVD. Apparently, the SMURFS are making a comeback in major way and your brothers have caught the fever. You started watching it during the last trip to Sloan. You were just starting to get into it. I used to love the SMURFS when I was a kid. They are so cute and blue and there is always some sort of trouble going on. I love that they are trying to bring it back. Liam and Quinn watched their DVD of it for the drive out there. We arrived to Newport around noon and parked our car and Chris was waiting for us. The boys were so excited to see their cousins. We walked down a lush filled hill with a really cool tunnel that you have to go through and out on the other side was this gorgeous beach, a few shacks to eat at, and tide pools galore. Our version of Heaven. Which is why you were with us today in your dolphin form. More on that later.

I threw down our things by Tiffany and it felt so good to see her. To just sit and catch up on things. We talked a lot about you, of course. We talked so much at one point we had no clue where Quinn and Lanye had gone. Turns out, they were way down the beach looking for crabs. Liam was right in front of us, down by the ocean with Bo; digging a hole to China. Between the tide pools, hole digging, wave jumping, boogie boarding, and body surfing….. those kids kept busy for 6 hours straight. It was so much fun to watch them and I cannot tell you how much it meant to be surround by family today. Family like that is just so good for the soul. All the kids get along so well together and I love to watch the interactions. It’s such simple fun, being out in nature, being a kid, with nothing to worry about. It’s how a child’s life should be. One big thing about losing you Ro, is how I am trying to protect any innocence that Liam and Quinn have left, fiercely. So much of it was taken away when you died. It’s important for them to do things like this today so they can understand that life will go on, life will be happy, life is still simple and innocent when you cut out all the bullshit and just get to the roots and the core of it all. Like seeing who can catch the most crabs without getting pinched. And even if you do get pinched, it will be o.k.

As we were packing up our things around 6 p.m. a bunch of dolphins came swimming by. They are everywhere this year. Wonder why:) We packed up everything, got the kiddies in the car and headed up to Chris and Tiffany’s hotel to finish the night off with swimming, pizza, and salmon for dinner. The kids swam and hot tubbed for 3 hours. We finally pulled them out of the pool around 9 p.m. Everyone was tired after our very happy, busy day. Happy, busy is a good thing for us now. Thanks again, Chris and Tiffany. Such a beautiful day for all of us. The little bugs fell asleep in the car about 20 minutes before we got home. I was looking at them in my rear view mirror. So sweet, so tired, so little. Yes, I’m using the word little on my 8-year-old giants who will soon be taller than me. But really. They are only 8. That is so young and it is easy to forget that because of how mature they are. Seeing them both crashed out in back of my car really pulled at my heartstrings tonight. So vulnerable and beautiful. They have been through so much and are still so amazing in every way. I am so lucky to have them. As we parked our car, we ended up getting home around 11, the boys were so tired but they both got up and asked what they could help carry. I carried most of the stuff but let them both carry some little things. I know how important it is to them to feel like they are helping.

As soon as we got into the condo, Liam went right to his bed. I tucked him in and told him how he was my favorite son and how I was so proud to be his mom. I told Quinn the same thing to as I tucked him in and I said it to you, as well Ro. You are all my favorites and I am beyond lucky to be your mama. As I was driving over the Coronado Bridge and I started to freak out about losing you and how easy it would be to just drive my car off of the bridge like I so often fantasize about….. Something clicked. Mother Fucker! I am truly not crazy. As much as I feel like I am and I think I am going to go insane….it’s just not going to happen. It’s very simple actually. I am a sane person, who has been put in an insane situation, and now I have to figure out how to deal with it. There will be no “Thelma and Louis,” dramatic car scene, no jumping off the Coronado Bridge, no overdose of drugs, unless you call coconut water a drug…..  Like a good friend of ours used to say to Woody,  in regards to a friend they had….”He’s got nothing!” Well, that’s me. “I’ve got nothing!” I’ve got nothing except a parent’s worst nightmare coming true, and a sane chip programmed in my head that will keep me safe. Damn. I’ve always wanted to try that Thelma and Louise car jumping off a cliff scene. Maybe I should just go and rent the movie  instead.

OK Ro. Time to tuck you in. Twinkle Twinkle my brightest star. I love you to the moon and back. Forever. I hope you are safe.

xoxo


I’ll follow you into the dark

Ronan. Hi baby. I miss you so much. This morning I woke up late and so did your brothers. I didn’t fall asleep until about 3 a.m., so we slept in until around 9. I don’t know what exactly happened this morning. Actually, I do. A couple of things. Your daddy called. He was upset. He said he had awful nightmares about you all night long and did not sleep well. His dreams of you are always the same. He dreams of the two of you playing together, and you are so happy. But then you die. Hearing your dad’s voice today shook me to the core. He was so upset, which in turn, upsets me.  I then got on the internet and I was obsessing over Neuroblastoma stories, treatments, doctors, etc…. It was like I was in a black hole and could not come out. Even though you are gone, and your little life could not be saved, I sit and obsess about what we could have done differently. It’s pure torture, but I also find the need to educate myself as much as possible. I cannot get this Dr. Sholler out of my head either. After an hour of reading, I was in a bad place. I came out of my room to make your brothers breakfast and the fighting between them started up. I lost it. I mean, completely lost it. I started bawling in front of them, telling them how I could not handle their fighting today. I told them how it was not fair that you just died, and how they need to be so thankful that they have each other and LIFE, as you didn’t have a choice to live life anymore. I told them, as I was hysterically crying, that I was so sad about losing you that I don’t even know what to do anymore. Uhhhh… maybe a little too heavy for 7 year olds, but today, I couldn’t calm myself down. I think I scared them and I know it upset them to see me so upset. They both ended up crying and wrapping their arms around me and telling me they were sorry. We sat for a while and cried together and talked about how much we miss you and how much we are all hurting. I told them how it is good for them to cry, how I understand that they are boys and they are going to fight, but today, I needed them to cut me some slack. Today, I just could not emotionally handle the fighting that I know is a natural part of being brothers. But today, I just needed a break. They gave it to me and after we cried and I got them settled down, I had them sit at the table and do some writing and workbooks. I mainly did this so I could get in my phone call with my therapist, Sarah. I closed my bedroom door and as soon as Sarah picked up, I was a blubbering mess. I don’t remember much about the beginning of the conversation, but I ended up calming down. I think she even got me to laugh about a tee-shirt we were joking I was going to have made. In fact, I know she made me laugh which is why I love her so much. She has that same dark sense of humor that I do. I eat that stuff up. It works for me. We talked a lot about you, of course. She told me how it’s like I’m living in a paradox world. I couldn’t agree more. That is so how I feel. We talked about your old soul, as we are both convinced that you are one. She thinks I am one as well and we both think that I have known you in a past life. I have no doubt that we have been together many times before you were born, Ronan. It is why our bond is so strong. After my talk with Sarah, I felt better. She pulled me out of the hole that I was ready to bury myself in today. I got off the phone with her and got Liam and Quinn ready to head out to the Padres baseball game with your Papa Charlie, Uncle Larry, and all of your cousins. They needed a day out and the baseball game was the perfect place for them.

Your Mimi Kay asked if I wanted to head over to Fashion Valley with her. I said, of course and we spent the day together. We had lunch and shopped a bit. We had a good talk about you. She told me how Papa dreams about you all the time and how you always have your hair. Mimi says when she dreams of you, you are still bald. I told her how I don’t dream about you. She said she is sure that I do, that I just don’t remember it. I hope she is right. Not dreaming about you is really hard on me. I would give anything to see you, even if it is only in my dreams. That is the best it is going to get for the rest of my life. I don’t even know how to comprehend this. How can you really be gone. How can only being able to dream about you ever be enough? It won’t be, but it’s all I have now, Ro. So please, come and see me and let me see you. I’m not scared and I miss your face so much.

After my day out with Mimi, we returned back to Coronado. Your brothers were on the lawn playing baseball with your cousins. I put on my running clothes and ran a fast 6 miles. After my run, I went and played baseball with everyone. It was sweet and fun but it also hurt. All I could do was picture you playing with us. You are always missing from everything we do and it is so hard to go on with everyday things like playing a baseball game. You would have been proud of the ball I caught in the air that got Liam out. You would have been proud of the way that I thought of you when I caught that ball. I think of you in everything I do. After the baseball game, we borrowed your cousin, Layne, for the night for a sleepover. I told you the quietness of having you gone is eerie. Having someone around to play with your brothers is good for us. The louder the better. It makes them happy and seems to help them. It helps me too. The quiet scares me and is something that I am not comfortable with.

If I could have any wish in the world, Ronan, it would be for you to come back to me. Please. I’m begging you. I don’t know what to do without you. I feel dead. I don’t think I’ll ever feel alive again. I know I have your brothers and I know how lucky I am to have them, but that still does not make the pain any better. How can I live without you? Is this whole thing even real? I said today to Sarah, I feel like I’m on that show “Lost.” Is this what Purgatory is like? I feel like I am trapped between heaven and hell and there is no escaping. All I want is to be with you. I cannot believe you are not here for me to kiss, to hold, to watch you grow up and play sports, to take care of when you are sick. I can’t believe just 30 days ago, I gave you a bath after you died and then had to leave you behind in a room as your body was carried out. I cannot believe the last words  you really said to me were to “Stop being sad, Mom!” That’s it. That’s all I get? It’s not good enough, Ronan and I don’t know what to do. I need you to guide me and to tell me that I can get through this because as of now, I don’t even want to. Everything hurts too much.

I’m sorry for unloading on you, little man. I talked to Doriet tonight and she is in the same place as I am. I hurt for her so much too. Esther passed away May 6th. You, May 9th. Two of the most special old souls that have ever existed. You two have brought us together and I know it is because you and Esther are together now, watching over us. You two will take care of each other just the way Doriet and I will take care of one another. By talking about you, loving each other, and going on because of the love we have for the both of you. Somehow, baby. Somehow I will get through this.

I love you Ronan. I love you to the moon and back baby boy. Sweet dreams.

xoxo

The ocean didn’t swallow me whole

 

 

 

Ro baby. One of our favorite movies is on. “The Fantastic Mr. Fox.” This is the first time I’ve watched it without you. Quinn is sitting next to me, eating a sandwich I just made for him. It is late but we are still awake. Daddy and Liam are asleep out in the other room. Quinn and I wish you were here with us watching our movie. You used to crack up at it, which in turn would make us crack up. There is none of that now. Watching this movie will never be the same again.

Did you see us today? I sat and wondered if you were watching us. I wondered if you would have been happy to see me smile. I smiled today while I watched your brothers play in the pool with their cousins. They laughed a lot and there was a lot of wrestling and horsing around. They looked so happy. As I watched them, I was overwhelmed with a mixture of happiness and sadness. It made me happy to see them so happy, but it also made me sad. How can they go on, how can the laughter continue without you? I know it is a beautiful thing and I know it doesn’t mean they miss or love you any less. But it still felt wrong to me. Will it always feel this way, Ro? I hope not. I hope someday I will learn to feel happy again and not have to sit and second guess it and not have to feel guilty about it. It still feels like I am betraying you.

I spent the day with your brothers. We enjoyed the sun. I went boogie boarding in the ocean. I ate a bit for you too. I tried to soak up the time with your brothers. I am watching them form a new kind of relationship now. They seem to fight less and love more. They seem to be aware of how lucky they are to have each other. They seem to be developing an understanding of how precious life is and how we have to make the most of everyday. They are being respectful and there is less sass and chaos. We are getting them back into a stable routine which they are thriving on. I know how important structure is, how important our family time together is to them. I know how much they have missed it. I’ve missed being able to give it to them too. I won’t say it feels good, because nothing feels good yet. But it gives me a purpose in life which I really need right now. Knowing that I have to work hard to help them get through this is something I feel so lucky to be able to do.

I went on my nightly run on the beach tonight. It hurt and I ran hard. I ran with a lot of anger tonight. Guess who I was angry at tonight? Everyday it is somebody or something different. Tonight, I directed my anger towards Dr. Kushner. I know, so not fair and so pointless. I know he is a good doctor, Ronan but I am pissed about the way he ended things with us. It wasn’t right and someday I am going to write him a letter and tell him all of this. I wrote it in my head tonight on my run, but I don’t have the energy to sit and have it out with him now. The way he sent us off, without even giving us a proper goodbye; I’m sorry it just doesn’t sit well with me. And why didn’t he look me in the eyes, Ronan. I don’t care how badly he felt; the fact of the matter is he wasn’t the one who had just been told in not so many words that there was nothing else that could be done for you. Nobody was hurting more in that room than me. He just sent us on our merry way and had his freaking assistant call us the next day to tell us he thought we should go to Chop. That will never be enough for me and it will never sit well with me. He owed you more; he said he would fight for you and not give up. He did give up and that is not right. Someday Ronan, I will fix this. I will make sure he never forgets you and I will give him another chance to make things right. I know he has this in him and although it may seem so pointless, it is not to me and I know it is not to you. I need closure in so many ways and this is one of them.

Did you see me after my run, Ro? It was such a long and dark run tonight. I still had so  much energy running through my body so guess what I did?? I went down to the beach, threw off my shoes, my hat, my shirt and ran into the black ocean. I swam in that deep, dark ocean until I could now longer breathe. I waited for it to swallow me up, but it didn’t. So, I swam out as far as I could and let the strength of the waves carry me back to shore. I did this for about a half an hour. The beach was empty, the ocean was mad, and I screamed and cussed at it until I physically could do no more. I told the world to fuck off for taking you away from me. I told the world that I was going to kick it’s ass. I told the world a lot of things tonight. After my swim, my mind calmed down a little bit. I think it was the physical exhaustion that kicked in and did it. I did it for you tonight, Ronan. I swam in that dark ocean because I am lucky enough to be alive and I am lucky enough to be able to do something like that. You will never have the chance. So tonight, when I jumped into that water, I took you with me. I wasn’t scared because we did it together. I wanted you to feel the coldness with me. I wanted you to be able to do it too. Everything I do in my life, it will be with you. I will always take you with me, Ronan. Just you and me, Ro. Just like you used to always tell me. You’ll be with me everywhere I go and with me in everything I do. I promise you that.

Alright my little monkey. That is all for tonight. I hope you are safe. I hope you always feel the love surrounding you. There is so much of it in the world for you. I miss you so much. Every second of every day. G’night my love.

Hello you lovely peeps. I hope you are all well. I just wanted to add a little something tonight before I drift off into my restless sleep. As much as I try to keep up on all the comments on here, I can’t. I try to do my best and I love what you all have to say. I checked them first thing this morning which I normally never do and something was written about how a certain person wished the lesson I would have learned through all of this is that there is no such thing as the perfect family. That there is no such thing as having it all. This remark has bothered me all day. Who is it who decides such a thing? To me, perfection can have a million different meanings. To me, I know what the perfect life was because I had it. To me, the perfect life was very simple. A roof over our heads, two parents who are madly in love with each other; who created a very safe and loving environment for our 3 heathy boys. I am living proof that the perfect life can and did exist until Ronan got sick. I now look around and I see all of my beautiful friends and I know they all know that they have the perfect life due to what we have just went though. I know they are all so thankful for the “imperfections” that they deal with on a day-to-day basis that mean nothing because they have a healthy family. My world would be shattered if I didn’t believe that a perfect life does still exist for some people. I have no doubt that my definition of perfection will now become different because Ronan is gone; but I still feel so very lucky. For going through such an awful thing, I look around and see perfection in my husband and my twins everyday because they are full of love and health. After looking up the definition of perfection, I still stand by what I say. It’s sad to me that somebody wishes the lesson I would have learned from all of this is that perfection does not exist. A better lesson for me to have learned through all of this would have been to open up my heart and embrace all the love that surrounds my family. To open up my mind to a world full of imperfection and to try to make a difference. To just be me, which is all I am trying to do to get through this thing called life. Perfection does exist and I had it for 4 blissful years. I will fight for the rest of my life to get pieces of it back here and there because that is what Ronan would want. He would want me to fight for the perfection that existed in our family. He would not give up on me and I have a slew of the most perfect friends who are here to help me achieve this. Perfection is real, perfection can have many different meanings. Perfection to me means not taking a thing for granted and living with the most love in your heart that you are capable of. It means stopping at nothing to get it until your heart is fulfilled in the way mine was when we had Ronan in our family.

I love you all; even the one’s on here who try to knock me down because lord only knows why. It’s not going to happen. I have a message to send and a job to do and if you’re not with me, or you just want to say hurtful things, then please stop reading this. I’ve done nothing except love and fight my hardest for a little boy who deserved so much more than what he was handed in life. If this offends you for some reason, I’m sorry. This is my life, my feelings, and my Ronan.

That is all for tonight. Love and blessings to you all.

xoxo

The oldest definition of “perfection”, fairly precise and distinguishing the shades of the concept, goes back to Aristotle. In Book Delta of the Metaphysics, he distinguishes three meanings of the term, or rather three shades of one meaning, but in any case three different concepts. That is perfect:

1. which is complete — which contains all the requisite parts;
2. which is so good that nothing of the kind could be better;
3. which has attained its purpose.[4]

Hellllllooooo Philly!

I’m not scared yet. Is that weird? Because at this point I should be scared shitless. And I don’t need to point out the obvious for you all to know what it is I should be scared about. Maybe it’s because I’m too numb, still in too much shock, or in deep denial. But I honestly don’t think those are the reasons for my being fearless. I still have this insane feeling in my heart that Ro is going to be fine. Maybe every parent whose child is diagnosed with cancer feels this way. It’s survival mode perhaps? Whatever it is, I’m not going to question it and I am going to embrace it as much as I can. I’ve questioned so many things today. Why Ronan was chosen for this journey in the first place, but most of all why he has to fight so hard through it. He is fighting like I’ve never seen a person fight before in my life. I know this is a big part of why I can’t give up yet. As long as Ro is fighting, I will not stop fighting for him. How could I? Any parent put in this same situation would do the same thing 100% guaranteed. To give up now would be so cowardly. I have never been a coward in my life and I am not about to start.

Today was one of the most beautiful days I’ve ever had in my life. Fernanda picked Ronan and I up to go to the clinic at PCH. I cannot tell you how good it felt to be back there. Dr. Maze came to see us while we were waiting and I got to watch my friend and see the pain in his eyes. He puts on a very bad poker face even though he tried his best to give me his famous smile and everything is going to be o.k. look. He left after a few minutes and looked at me and told me he was sorry. I just sat and gave him a smile as that is all I could do. After he left, I sat and thought for a few minutes. I have no shame when it comes to telling him the things that come rambling out of my head so I sent him a short text that just said something like, “Please don’t tell me you’re sorry. I cannot have you give up on Ronan too.” He then replied that he would NEVER give up on Ronan and that is not what he meant. He just meant he was sorry that Ronan is in pain as it breaks his heart. I felt better after that as that man has been with us through this from day one. I know he will not give up on Ronan because he gets it. He knows Ro is different no matter how hard this is getting and he knows my child has the spirit of something that is unlike anything on this earth. Dr. Maze is not going anywhere and more mother fucking doctors should strive to be more like that man. Enough with the egos and the ” I am GOD” attitudes. Enough of this cowardly bullshit. Not naming any names, of course. That would be much too easy. Dr. Maze also knows Dr. Mosse and took the time to send her an email in regards to us. He thinks the world of her which is so very comforting to me. He is very good judge of character and the fact that he respects this woman so much, means everything to me.

We were soon called back to the clinic room where we sat for a while and Dr. Eshun, Ronan’s primary doctor at PCH, came in to see us. Another prime example of an amazing doctor who is full of compassion and heart. We sat and talked and the things we talked about were not easy; but not once did he break eye contact with me. That is HUGE in my book. It is a sign of respect and just pure hearted goodness. I asked him hard questions and he answered as honestly as he could. He gave me his warmest smile even though I knew he was sad. That mans smile could melt a room. I thanked him for being so kind to us and told him how much it meant to me that he had the courage to talk with me the way he did. He supports our decision and understands where as parents, we are coming from. I’ll bet he is the most amazing father. I can tell that about him. He takes all of this personally and has tried to guide us as best he could. We will always be thankful for that.

While Dr. Eshun was in the room, our social worker Marcia came to see us as well. She has been so supportive of us from day one as well. I’ve always known she was a special lady but today, she kind of blew me away. She was so hopeful and so supportive of what we are about to take on. She told me what a good mom I am and how proud she is of me. It felt really good to hear from her as I respect her so much. Her eyes were filled with so much light and love today and I know she believes. She believes in miracles and she believes in Ronan. She believes in our love as a family and believes he can do this. She is still standing by our side and is not going anywhere either. I am so thankful for this.

The next person I saw was, “A.” This was probably the hardest person that I had to face. I’m not sure why…. actually I am. It is because I am completely in love with that woman and I wanted nothing more but to come back to her with the most amazing news…. I did not want to come back to her this way. She sat with me, hugged me and held my hand for a long time. We talked about really tough things. Things that I think about on a daily basis, but I cannot go there yet. A is logical, realistic, and matter of fact. But this is why I love her so much. I know she is only telling me the things she is telling me because she wants to make sure I am as informed as possible and that I have thought about everything, every possibility, every outcome. She does this for me because of the love she has for our family. All that bullshit about doctors not getting personally involved with their patients is bullshit with A. She is fully invested and proved that by the way she ran out to our car today to chase us down to give us one last hug and kiss goodbye. Nobody at fucking Sloan would have done that for us. I think I may have set the bar a little too high with them. Don’t get me wrong, I still think they are one of the best hospitals in the nation. But they will never compare to my little PCH and the kind of quality care we get there. Today, I felt like I was floating on a fluffy cloud with all of my favorite people waiting for me with open arms. As shitty as the circumstances are that we were back, it filled me with the love that I have so been missing.

Dr. Maze also came back to see us again and say goodbye. We will see him soon and Ronan asked after he left if he could come with us. I told him I didn’t think so, but this time we won’t be gone so long so we will be back to see him soon. He smiled and told me that made him happy. Little love bug.

While I was waiting in the isolation room with Ronan as he ended up needing platelets and blood, I saw the woman who walks on water to me. Dr. Adams. I hesitated to chase her down but Fernanda was like, “Are you crazy?! You know that woman always makes you feel better!” Did I forget to mention that “Nanda,” as Ro calls her sat with me all day long? My darling, F. I don’t know what I would do without her. Actually, I do. I would not be getting though any of this and would be curled up in the fetal position somewhere. Anyway, as I was getting ready to chase down Dr. Adams I looked at Fernanda and said, “I can’t see her, my entire ass is hanging out of my pants!” I’ll have to back up the story on this one. I forgot to mention that I was wearing this pair of pretty thin seersucker pants today and when we first went to the clinic and I was getting Ronan out of the car, I dropped my cell phone and bent down to pick it up. I heard a big, “Riiiiiiipppppp.” WTF?!? I turned around to Fernanda and said, “Did my pants really just rip and is my ass cheek fully exposed?” Indeed they had. The only thing I could do was laugh and roll with it. I spent the entire day pulling down my tank top to cover up my bum as to not expose anyone to the beauty of my milkshake maker. You know, my favorite booty song…. “My milkshake brings all the boys to the yard.” Yup. I fully brought my milkshake to the clinic today and I don’t think Woody would have appreciated it if any boys came to my yard. Fernanda, of course had the problem solved as she had another pair of jeans with her. I threw those on and went down to see Dr. Adams. I peeked around the corner and there she was. I waited for her to see me before I approached her. She had no clue we were back and it took her a minute to register it was me. She looked at me for a few seconds and goes, “What are you doing here. I did not want to see you back.” I calmly explained the situation to her and she teared up and pulled me into a room. She hugged me, held my hand and locked eyes with me while we discussed everything. And I mean everything. She kept telling me that what matters now is the care that I am giving to Ronan, which is 100% my complete love and strength, but I also needed to let him know that we are all allowed to be sad because none of this is fair or right. She was 100% supportive of trying this MIBG therapy. We touched a bit about how his cure rate is now becoming slimmer and slimmer. I told her I knew all of this but I didn’t care if there was a 5% chance that he could beat this. I wasn’t giving up yet. She told me she knows what good parents we are and we know what is best for Ronan at this point. I don’t think I’ve said this before but just being in her presence almost scares me; but in a good way. I swear to god I’ve known her in a past life or something and I also swear to god that she is seriously an angel walking around on this earth. She has such a presence about her and is one of the most beautiful women I’ve ever come into contact with. When I am with her, it is as if she gives me the strength that seems to be surrounding her at all times. She has a very strong aura about her. I feed off of this and I actually felt really calm around her today. I always feel calm and at peace when in her presence.

We had our sweet Patty taking care of us all day. She is not even a nurse to me anymore; she is my friend. She sat with me, cried with me, laughed with me, and helped me with Ronan as much as he would allow. She helped me out to my car and carried all of our things. It was so nice to be back home today and I was so glad Patty was the one taking care of us.

Um, yes, hello. I could write a freaking novel tonight while on this red-eye. I should be sleeping but I have too much buzzing around in my head and to much to talk about today. I’m getting so sleepy but I want to touch on this woman Joanna who emailed me today and her email said please call me, I promise I’m not crazy. What the heck, I thought so I picked up the phone and called this lady who lives in Toronto, Canada of all places. Instant connection. She told me the most amazing story about something she had just experienced and swears it is a sign that Ronan is going to be o.k. I believe her. I cannot go into details because at this time, I am seriously about ready to pass out. This stranger picked me up off my feet today when I needed it most. We talked about fate, the timing of all of this MIBG therapy as if we would have started this any later…. Ronan would not be eligible for the antibodies that come after this due to a time period. She said maybe Dr. Kusher kicking us to the curb was a blessing in disguise because now we will start this therapy and if we get the response we are fucking praying our asses off for, Ro will still be eligible for the antibodies. We will cross that bridge when we come to it, but you all know I love a good fate story. Fate and hope are what I’m hanging on too.Thanks Joanna, for reaching out to me. It meant the world to me today.

Also, I am learning such lessons from a little 10-year-old. Not really lessons, but more like what it means to see this through the eyes of a very wise child. Mr. Luke Ashworth, my heart will forever be yours. Ronan’s cousin has been such a blessing to us. He loves my Ro so much and Ro loves him just as much. Luke gets all of this, as he is wise beyond his years. He looked at me tonight and goes, “Promise me you’ll never give up.” I looked at him and said, “Luke, of course I will never give up. I promise you that. I will never give up on Ronan.” We had our moment and I will never forget it as long as I live. He thinks about Ronan so much and is so worried about him. It takes a very special boy to be so concerned about something like this. I am so proud to have him as a part of our family.

This is all I can do tonight. Long enough for you all? Geez! Blabber mouth city could not shut up tonight. Adrenaline I guess. I’m in mama lioness fighting mode. One more thing I want to  mention…. Thought-out all of this I find strength in so many places, but one person in particular is always on my mind. It is someone I never knew, but he is one of my idols; Pat Tillman. I have called Ronan our mini Pat Tillman since he could walk. I often think about Pat and how strong-willed he was and just what an amazing man and role model he is to our family. We all worship him. I think about his strength and bravery and I channel this by thinking about him when I think I can no longer go on. He helps me put back on my fuck you cancer boots and continue to fight. I know if he were here and in a twist of fate, he were to meet Ronan, he would never give up on him. I feel like he is one of our angels watching down on Ronan wherever he is. Ronan reminds me so much of him… just the little I know of him from reading some books that have been written about him. One in particular by his mom. The things he did as a child are so similar to the spirit the Ronan embodies. So, Mr. Pat Tillman…. thank you for being the definition of what it means to be a real man and to fight for what you belive in no matter how many people tell you differently. You will always be a hero and a god in our eyes.

G’night my lovies!!!!!!! Or G’morning I should say!

So proud to have you all by our side and I will never get tired of saying that. You mean so much to us. CHOP here we come. Dr. Mosse, I have faith in you; I’ve known this all along. NOT GIVING UP. Who could give up on a fact like Ro’s?? Only the UGLIEST of souls.  And we don’t allow ugly souls on this blog.

We are here. We made it. I have not slept in 24 hours which is probably why my post was a little “hyper.” Adrenaline. In a turn of events, Ronan’s pain in his legs that he has been having, which has been horrific, is not bothering him at the moment. As soon as we stepped off the plane, he started smiling and told me he loved me so much. He has not complained once since we arrived to our room. I have a good feeling about this Philly place. I sent Dr. Mosse an email at 6:30 this morning telling her we had arrived, we were at her mercy, and would do whatever it takes to get Ronan started on this treatment as soon as possible. Not 10 minutes later she emailed me back saying no child should be in pain and that they will move his treatment from next week up to this Thursday. Now that is an amazing doctor. Talk about class, compassion, and heart. I knew this about her from the first time I met her. This is our time now. Things are falling into place and I am going to keep holding on to my belief of that. As Tricia dropped us off at the airport tonight and hugged me tightly she whispered, “Bring our baby home.” You bet your ass I will, TT. I promise you that.

Time to try to get some shut eye; although it looks like Ronan has other plans as he has set up a whole battlefield of Star Wars guys in our bed. Love my little fighter so much.

I hope you all have a beautiful day.

xoxo

You must have been a beautiful baby

Ronan’s counts are still rising. He had a great day. I came to the hospital this afternoon with Liam and Quinn. The 9th floor blocked off the playroom for us so Ronan could play with his brothers. We stayed in there for about 3 hours and the boys played their little hearts out. The twins then left with Woody to go back to the RMH so Woody could shower and get some work done. I stayed with Ro for the rest of the day and evening. We played out of our room most of the day, and walked the halls shooting people and playing in the playroom. Ronan took a red marker today and colored all of his arms and said it was blood from his battles. Pretty much anything goes in the hospital as far as I’m concerned as long as he is having fun. I gave him a good bath afterwords in a little tub of water on the floor. He’s all clean now and just fell asleep as he didn’t nap today. Woody is on his way back here to stay the night so I can have some time with L and Q.

We have some scans set for Friday and Ronan will be discharged after that. They keep changing the set of scans we are having but as of now, I believe it’s the CT and Bone Marrow on Friday and the MIBG next week. That is the last I heard from one of the doctors earlier today, but that could always change. I asked New York Miss Macy if she could take Liam and Quinn for a few hours on Friday so they don’t have to sit in the hospital with us and wait. She happily agreed and I know the boys are going to over the moon about spending some time with her. It will be so helpful to us to have them off somewhere having fun, rather than sitting in a hospital.

So anybody that knows me, knows that I have been obsessed with taking pictures my entire life. Just a hobby that brings me much happiness and always has. Taking pictures of my kids is definitely my favorite subject. I have over 11,000 pics on my iphoto… so to say I’m obsessed is an understatement. All of my pictures on my iphoto are now defined to me as, this was our life before Ronan had cancer and this is now our life after. Sad but true.  Going back and looking at pictures before all of this is painful to me and makes me break down in tears. Every picture of Ronan before all of this makes me sick to my stomach as I would have never in my life have imagined this happening to him. He was such a gorgeous baby…. how can he now have cancer???  I sit and look at all of our pictures before all of this and we were such a happy family. We have so many beautiful memories and we were so blessed. I get so angry that all of that has been taken away and we have to work so hard to now find our happiness in the hardest of times. Today, as I was pushing Ronan’s asspole around the halls as well as trying to carry his gun, Star Wars guys, and his Crayola markers that he called his “Missles,” I was overwhelmed with anger. I caught a glimpse of him walking down the hall as I followed behind and he almost tripped over all of his lines. He looked back and goes, “Mom, I can’t carry my tubies and my guns.” I wanted to punch a freaking wall. It makes me sick that my 3-year-old has to worry about tripping over his lines. I am also pissed because Ronan has his 4th Birthday coming up and all I wanted was for him to be home. Instead, we will have to celebrate it in the hospital. All he wants to do is go back to Phoenix and he tells me at least once a day that he is never going to get to go back home and be with his brothers. I tell him that is not true, but no matter how much convincing I try to do, he argues with me and does not believe me. In his head, he thinks we are going to stay in New York forever and he thinks he is never going home. So much for a little boy to try to understand. Too much for a little boy to try to understand. As happy as he is, I also know that he is worried and sad and there is nothing I can do to take that away no matter how hard I try. That is my venting for the evening. I feel a little better now. Not really, but I am trying to convince my self otherwise.

I left the hospital late tonight and came back to RMH with Liam and Quinn. We went down to the common area and worked on some of their homework that their wonderful teacher, Mrs. Martin sent with them. I cannot tell you how good it felt to sit and help my boys with their homework, like a normal mom. After we worked on homework for about 30 minutes, we played the board game Operation. I have not played that game since I was a little girl. We had so much fun playing it together tonight. We are now all snug in bed and Liam and Quinn are watching CSI. A bit mature for them, but they both say they love it. My 7 year olds are now going on 30….. They are growing up way too fast:( Makes me sad.

Tomorrow is a new day. One more day closer to getting Ronan out of the hospital. Cannot wait to see Miss Macy tomorrow. Cannot wait until Friday, when we can bust Ro out of there and all be together outside of Sloan. Sweet dreams, my friends. Thank you for checking in with us. Have a beautiful day tomorrow.

xoxo

Pure and simple happiness

I’m not sure what exactly has been going on lately. Do I dare say it as I feel like I’m jinxing myself? I’ve been feeling really happy. Like, really, really, really, happy. Not a lot of tears, not a lot of sadness, just a feeling of complete and utter happiness. I cannot remember the last time I’ve felt this way. I’ve taken this hospital thing and totally turned it around. I’m making every second that I am here with Ronan as fun as possible. We have done so much playing and laughing. Nights are the best around here. especially tonight. Tonight, we have our own room. It’s a miracle! We have taken full advantage of it too. We had Trish come over for a little while, until Ronan kicked her out. After she left, we played Star Wars and guns. We ichatted with Woody, Liam, and Quinn. We danced to some silly Star Wars thing on YouTube. We bathed his Star Wars guys and Ronan took a bath himself. Or as much as one as he could. We cuddled, snuggled, and made a fort. He stayed up super late and is just now starting to drift to sleep. I know a lot of this happiness is coming from me watching him get “better.” His pain is almost entirely gone in his arm and you have no idea what a relief that is. Seeing him hurt like that was one of the hardest things I’ve ever had to watch. I know we have scans coming up and I know it is going to be tough, but I really feel like we are going to see something positive come out of them. I feel like he is on the right track and we can start moving forward. I have nothing to base this on…. lord only knows what could really be going on in that little body of his. It’s just a feeling I have and that in turn has a lot to do with my happiness. He just looks SO great. So much like his old self. I cannot get over how strong of a little boy he is. His strength amazes me more and more everyday. I certainly do feed off of him and the way he is feeling. He is happy right now so I am happy. It is very simple.

I’m also basing a lot of this happiness on just being in New York. Don’t get me wrong, I miss my twins, my hubby, my home, and my friends, so much. But if I have to be anywhere else in the world; this is where I want to be. I feed off this city. All of the running I have done has really been helping me too. It is so therapeutic to me. There is just something about pounding the pavement and getting out all of my aggression in a way is a healthy outlet for me. Many times while I am running and if a hill becomes too hard or I get a cramp, I make myself push right though it. I like to picture Ronan as a teenager running beside me and me trying to keep up with him. I envision these things a lot. I also think about all the pain he has gone through and if I start to feel tired or sore, I know it is nothing compared to what he has gone through, so I just keep going. He is so inspiring to me and I refuse to give up on life, on running, on my relationships, on myself. I will keep pushing forward for him. Woody is very surprised at how well I am sounding lately. I told him not to hold his breath, as I know it can change in an instant… but for now I am just doing the best I can in this very moment and nothing more. A good day is cherished more so than it has ever been in my life before all of this.

Trish came over today and stayed with Ronan for the day. I went back to the RMH, crashed in bed for a while due to the 3 hours of sleep I had gotten the night before. I then got up, showered, and ran down to Starbucks with my laptop to catch up on some things. I ordered my coffee…. the place was packed with nowhere to sit so I went to the nearby neighborhood pub. They have WiFi so I sat in there and drank my coffee. My friend Barbara called me and said she was on her way home and I should stop by. She has an apartment right across the street from the RMH. I told her I’d be right up. When I arrived, she wasn’t home yet and I was greeted by her lovely husband, Stewart and their adorable little dog, Uno. I plopped on the couch and was surprised at how at home I felt. I talked with Stewart for a while and a few minutes later Barbara came busting in the door as excited as could be. She had just taken a family to buy a new stroller for their 3-year-old little girl who is staying at the RMH house. Super sweet family and their daughter Brooke was absolutely darling. She has Neuroblastoma as well. They are here to have Dr. La Quaglia do her surgery on Monday. I told them they were as close to God as they could get with that man caring for their daughter. He is the next best thing. They soon left and I sat on Barb’s couch and talked with her for a bit. I did not want to leave and totally could have stayed there forever. It was so cozy and comfortable. I am so glad she is right across the street from us. Makes me feel a lot less lonely here. She is so welcoming and warm. A true New Yorker with a heart of gold.

It’s people in the world like Barb that make me feel like I am going to be o.k. in this city. I will find my way, meet new faces, and build my new little world of helpers here. It will take time but I’m on my way. There are so many nice people in this city. I’m not scared, intimidated, or overwhelmed. It just feels right. It just feels like my second home.

Tricia is leaving tomorrow. Let the tears begin. I wish I could keep her with me here forever. It is so good to be together. She will be back though and I know all I have to do is say the word. Woody is flying in on Tuesday and I called him today to see if her could please bring the boys’ with him. We talked to their teacher and she said it was fine. Ronan misses them so much. I miss them so much. We need to see them. They will come out with Wood Tuesday night until Sunday. It’s is going to be so wonderful to all be together. I’m going to turn my little Liam into a New Yorker after all:) The scan days are going to be hard with them here, as those days are always very intense but we will make it work.

Getting sleepy now and Ronan is passed out cold. He played hard today. Sweet baby boy. I hope you are all having a wonderful weekend. Thank you for checking in on us. G’nite dear friends!! We love you!!

xoxo

Soho and a Circus

Ro and I started off our morning the way we usually do. Cuddly and quiet. We sat and played in his bed and enjoyed our quiet time together. My mom came to the hospital with Tricia around 11. So happy to see my bestie. Ronan was not a happy camper at first, but he soon warmed up to Trish. It’s his whole I know my mommy is leaving thing that gets him into his little moods. I told him I was going home to shower and he agreed to let me. Thanks Sarg, as my New York Miss Macy likes to call him. I headed out the doors of Sloan with Trish and we went back to the RMH so I could shower and get ready for our few hours out. We figured out which Subway we needed to get on to get to SoHo… Woody  would have been SO proud. I am determined to master that thing by the time I leave here. We spent a few hours in Soho roaming the streets and had a bite to eat. It was so nice to catch up with my TT and to actually get to hear about things that are going on in her life. She is so concerned with mine that the phone conversations we have usually consist of what is going on with me and Ronan. I hate that. I hate that I feel like I am missing out on the little things that are going on with her, even if it is knowing what she is doing for lunch. I used to be so spoiled in that regard and would know what her entire day/night consisted of. I miss that so much. The simple things, the little things, the nothing is new because we talk 5 times a day about anything and everything and nothing. There is no more nothingness now as everything is wrapped up in this cancer cloud. The innocence has been lost forever in my life and I will never get it back. Neither will my best friend. But we keep holding on, telling each other that we will be stronger after all of this. Totally see a trip to Vietnam in our near future, TT 😉

After our Soho day out, we rushed back to RMH and I threw together my overnight bag so I could return to Sloan. My friend, Ed, emailed me a couple of weeks ago in regards to seeing a Broadway show. I told him about my mom and Trish coming into town and the next thing I knew we had tickets to “Billy Elliot.” Somebody he knows (a very kind person indeed) treated us to the show. THANK YOU, Ed’s friend:) I wasn’t able to go, due to Ro being in the hospital so I sent my mama, Trish, a woman, Barbra who runs this amazing organization called The Candlelighters in NYC, and a mom and daughter(who is 7 with cancer) to the show. They had an amazing time. It meant so much to me. This is my mom’s first trip to NYC and one of my wishes was for her to go to a show on Broadway. It should be something that everybody checks off their bucket list. It felt so great knowing that my mom was getting to do something that is so special to me; she deserves it so much. Thank you, Ed for organizing this. Thank you, Barbra, for taking such good care of my mom and Trish. They loved you and I cannot wait to spend more time with you. What you do for other cancer families is simply amazing.

I spent the night here with Ronan doing our usual thing. We made slime with the Childlife guys, played more Star Wars and I fed him dinner. We had a very special visit with my dear friend, Niki. It was comical and sad all at the same time. Niki, who is here with both of her young children put them in a cab and came to Sloan with cupcakes and dinner for us. I told Ronan that they were coming by and asked if I could go out to the elevators on our floor to say hi and grab our food. He said yes but was upset they couldn’t come in our room to see us. I left him in his bed and ran out to see Niki and the kids. I was greeted by the best giggles, smiles, hugs, and tears in the world. It was so nice to have my friend wrap her arms around me and hug me the way she does. She gives great hugs. I chatted with them for a few minutes then decided to go back and see if Ronan would come out to say hello. He agreed so I picked him up, and wheeled his “asspole,” out to the floor of our room. As I was wheeling it down the hall I was suddenly hit with a moment of panic wondering how Laely and Wesley would react to Ronan’s pole and the tubes coming out of his little body. My panic almost stopped me in my tracks but I then remembered feeling the same way over Laely seeing Ronan’s bald head for the first time and the conversation I had with Niki about it and how Laely didn’t even notice. To her, she was just seeing her friend, Ronan. She doesn’t get that he has cancer (they are the same age) she’s not scared of him… to her, he is the same little boy as always. The world is exactly as it should be in her eyes. Seeing those 3 kids tonight was the best medicine in the world. This is how our world works now, and we have to make the best of it. So tonight, Ronan got to see his friends through the glass doors of our floor as they could not come in and we could not go out. I held Ronan and watched as Laely and Wesley smushed their faces up to the doors and I got down on the ground and kissed them through the glass. We laughed, played, and loved. It was the best 10 minutes Ronan’s had in a very long time. Made both of our nights and we all parted way smiling.

Ronan and I then came back to our room to prepare for our nightly walk. Tonight though, he insisted we take all 4 of his guns with him and the very special balloons that were delivered to him from Dr. Maze today. I tried to talk him out of him out of taking the balloons with us, but he went into complete meltdown mode. (Thank you, Aubrey… you would have loved the smile those balloons got you:))) Ronan wins. I tied the bundle of the biggest, cutest, animal balloons in the world, onto his pole and I somehow managed to walk the halls with him for 30 minutes without breaking my neck. I couldn’t see a thing and everybody kept saying we looked like a circus. We got a lot of laughs tonight and went on a very special mission to try to find our nurse, Jen, who was hiding from us on the floor. She would jump out at random places and Ronan would blast her with 2 of the 4 guns that he made me carry. Very entertaining night around here. I swear, I’ll do anything to hear Ronan laugh these days.

After our walk, Ro was worn out so we came back to his room and snuggled in his bed. He kept telling me how much he loved me and we sang our nightly “Twinkle Twinkle Little Star,” together and he soon drifted off to sleep. I am listening to his little breaths as I sit beside him and write this. It’s my favorite part of the night, watching him sleep. We’ve been in the hospital for 3 weeks now, 21 days, 504 hours…. this is complete insanity and unfairness. I would give anything for this to all go away. I would give anything to be at home with my family, where I belong, taking care of my Liam who had to stay home from school today because he is sick with the flu. I would give anything to be the normal mom again. Except this time, I wouldn’t whine about my child throwing up all day due to the flu. I would be SO VERY THANKFUL. I cannot wait for the day that Ronan is well and this happens to me. One of my kids gets sick with only an ear infection, a cold, or the flu. It will be one of the best days of my life.

While I was sitting here writing tonight, I got an email from my friend, Jon who is cousins with the little girl, Phoebe I talk about sometimes on here. She was Ronan’s last roommate at Sloan and I just had lunch with her mom the other day. Jon came to visit us a couple of weeks ago before he took the train to visit Phoebe and her family. Love him.  I’ve been feeling pretty strong these past few days but a paragraph into Jon’s email and I was bawling like a baby. Not because I was sad, but because the things he wrote to me hit such a nerve. His words were filled with such truth and light and it was as if a little light bulb went off in my head. “DINGDINGDINGDING!!!!” I am doing this. Woody is doing this. Ronan is doing this. Phoebe is doing this.  We are all doing this and we are all going to get through this. We are too strong not to, Ronan is not going to let this cancer crap win and neither am I. Jonathon, somebody who did not know us at all, knew this after only spending a few days with us; just like the way I knew it about Phoebe within a few minutest of meeting her. She had this look in her eyes and I just knew she was going to come out the other side of this only more beautiful than ever. The same look that I see every time I look into those baby blues of Ronan’s. Fuck the statistics and fuck the odds. I refuse to listen to them because they have nothing to do with Ronan.

I’m ending my writing tonight with  Jonathon’s email (with his blessing) because his words are raw and real and give me strength. I love you and your beautiful family so much. Thank you for this gift tonight, my friend.

Goodnight to you all, my lovely souls. Thank you for all of your kind words, thoughts, prayers, support and love. But most of all, thank you for BELIEVING.

xoxo

Maya,

This is a quick note, not meritorious of a response. I’m writing tell you that you are a fucking badass. I’ve attempted to think of other ways to write this, less vulgar, more poetic, but fuck that.
I met a lot of folks at Sloan, visiting Phoebe for 6 months, or 8 months, or 10 months, or whatever the hell it was. And I worry about her every day, still. But the point of this note is to tell you that I knew you and Ro for only 4 days, and I saw that you were tired, and pushed against a wall, and still, more than anyone else I’d met, I knew in your eyes that you’d already won.
This was easy to see. I saw your resilience.
I don’t know anything about life. You called me out as a young fool, and you’re right, I know jack shit.
But I saw you, and Ro, your chests held high, and your smiles wide, and I felt your presence. Through those hideous turquoise plastic-felt curtains they threw between us, I felt your laughter, and your brilliant fuck-all attitude regarding the drivel we go through.
So this is one STRONG vote, from a kid in Chicago, saying laugh at their shit. Laugh at the crappy cots, and laugh at the exuberant candy-stripers, and laugh at the folks with FAKE smiles, because, let’s be frank, this is some bullshit. But that’s okay. Bullshit is bullshit is bullshit, and when I saw you, and Ro, and Woody, I saw the people I’d stake my livelihood on. I saw people I’d lay down in front of a train for.
Thanks for making me proud. Next time you feel that it’s too much, don’t worry. Just know that you’re already the most badass person I’ve ever met. You can do anything.
With love,

Jon