Cowboy Boots and Little Big Baby Steps

 

 

Ronan. 3:30 a.m. like clockwork, I am up. I have been sleeping well still, but it’s at this time that I am up and my mind is racing/missing you so badly that I cannot fall back asleep. I have a ton to do tomorrow, too. Seems like I have been doing a lot lately. I worry that I am not taking enough time to be sad/grieve for you on the days that I am so busy and so productive, that I don’t have time to sit around and cry for you. It feels wrong, but I also understand that in order to change things, Ro, I have to be strong some days. I cannot give in to my grief, everyday. If I did, I would not carry out what it is I am here to do, which is a lot. It is so much that I know I have people around me going…”Yeah, good luck with all that.” I don’t need luck. My luck ran out a long time ago when your disease took a turn for the worst. The only thing I need is the one thing that I have a never-ending supply of. That is passion. Passion for you which is going to get me everywhere. It is going to help me achieve everything that I set out to do for you. It is going to change the face of this disease. I already know this.

Today. I don’t even know what I did. I sat at my Starbucks office for hours. I met your Sparkly for a bit to take a break and to talk to him about some things I have going on this week. I went to him for his advice/insight/let’s play devils advocate. He’s always good for that. I told him my idea/ideas/the few people I have reached out to and who have reached out to me. I smiled a lot today around him which does not happen much. I always seem to be freaking crying. He looked at me and told me, “Look, your pain, this pain, is so much. All of your anger and sadness that you are feeling, it is never going away. But look what is happening. If you can channel it into the right direction, like you are doing, you are going to help so many people. You are going to make a huge difference. I know you can do this. You already are.” Then he made me laugh by saying, “And what in the hell are you wearing today? Your dress, cowboy boots, bright nails, and a smile? You are something else.” I know I am something else, because I am your, mama, Ro. And I know you always loved it when I would wear my dresses and cowboy boots. Little things like that, remind me of you, and make me happy. You would have insisted on wearing your boots, too. And I know your nails would have been painted, just like mine. You loved your fancy nails and my who cares if you are a boy, let’s go get a pedicure date. Maybe by this age, you would have stopped letting me paint your toes, sparkly. I hope not. We always had so much fun doing that together.

I ran home, dropped off my 50 notebooks filled with my evil plans to destroy the world, and went to pick up your brothers from school. I got to hear all about how Quinn gets to go to a pizza party for having so many points for his reading tests and I got to see Liam’s 100% on his spelling test. Little overachievers they are. I thought about how lucky they are, to be alive and living life as it is such a beautiful thing. I don’t think many people realize this. I think so many people, take it for granted. I am reminded of this, every second of every day due to not having you here anymore. It is both a gift and a curse. We got home from school and we did their homework. I got them ready to go to the Suns game with their basketball team as an end of the season treat that they do every year. Your daddy was supposed to go with them, but had your Papa take them instead due to a dinner I had to go to and he wanted to come with me.

Your daddy came home from work and ground rules were laid. “Are you sure about this?” he asked me. I told him that I thought that I was. “How do you know this is the right person, to be talking to?” I just sat and looked at your daddy. “My gut. My instinct. Because I have a feeling and it is a strong feeling. Because I met this person once and something about his eyes, told me I could trust him and that he was a kind, honest, good person who can give me some direction and insight. Because I am following my heart and that has gotten me this far.” We left for dinner. A dinner where we talked about you and some ideas. A dinner where I was told 2 things that I have been learning through out all of this which are, never take no for an answer, because there is always a way, to get a yes. And that word passion came up again. I was told all things are possible, when you have that and you choose to dream really, really big. It was a dinner filled with love, big dreams, big plans, yes you can do this and here is how you get it done, laughter, tears, support, and teamwork. And all of this came from going off a gut feeling that I had. I left that dinner holding on to your daddy’s hand and was reminded that I have the best teammate ever. Him. He looked at me and goes, “Well, what did you think?” I smiled at him and told him I was really glad that I listened to my heart. He told me that he was too. We made some plans on how we will proceed and the steps that need to be taken next. Little, big baby steps I’m calling them. I am trying to keep up, to move slowly, but some very big things are happening that I just have to keep up with. There is no stopping this now, Ronan. Moving forward is the only way to go and I cannot wait to see what you throw my way, next.

It’s 5 a.m. now. I need to try to sleep for a couple of hours. I love you. I miss you. I really, really, hope you are safe. I’m so sorry I can’t take care of you anymore. I am trying to take care of you, down here, there only way I can now. By doing all of this, for you. I won’t let you down. I love you, Ronan. Sweet dreams.

xoxo

My Ro. I miss you so.

 

 

 

 

Ronan. I think it’s been a few days since I’ve written. The days are still creeping along, ever so slowly. You’re still gone and I am still here. Barely. We are still at the beach. It’s getting closer to the time when we will leave this place, and return home. The thought of that makes my stomach turn. Back to reality. In a big way. Back to life going on, without you here. Your brothers will return to school and life will move forward. I don’t know how I am going to do this without you. It doesn’t seem possible.

I’m not really sure how the days have been going by; but they have. My memory is still foggy as I sit and try to recall how we’ve spent our time. A little time at the beach, eating out, seeing some movies, running….. I think I’ve slept a lot. Mostly just laying in bed, missing you. Not really living as I’m still not ready to. I had dinner with your daddy last night. It was a sad dinner. Everything with him is sad because we are both so sad about you. We talked about you a little, but dinner was mostly filled with silence and small talk. We saw a movie afterwords and it was really hard for us both to sit though it. My lack of concentration is distracting to everything I do, even trying to sit through a mind numbing movie. You would think things like that would be easy for me, but they are not. Even the simplest things have become difficult.

I think I’ve been avoiding phone calls. Crap. I haven’t called your Nana back in a week. Grandpa Steve has called for weeks and I haven’t returned his phone calls either. I’d really just prefer it if I weren’t here in this world anymore to worry about returning phone calls or having people worry about me. I just wish I were with you. Not my choice though, I know. I miss you more than ever.

I’m reading a new book. I like it so far, although I’m not that far into it. It’s called, “The Other Side of Sadness.” It’s basically about the way the mind works when losing a loved one. It is making sense to me as it’s more of a scientific approach to the way the mind and body work when dealing with so much pain. I think I’ll finish it in a few days, but it takes me longer to read books now. I used to fly right though them, absorbing everything easily. Now, I find myself having to go back and re read things and taking the words at a slower pace. It’s as if I’m becoming an entirely different person. Even the way I read a book is fucking different now. Just when I thought I had myself and life all figured out. Turns out, I knew nothing and I only really existed as the person I was, due to being your mom. I don’t know who I’m supposed to be without you. You were such a big reason to why I was the way I was. That person seems gone. I do get glimpses of her every once in a while. Certain people bring out parts of me that I miss so much. Macy is one of them. So are Liz and Olivia. I guess it’s because I feel so comfortable around them. One second I can be looking at Macy, and we will both be crying about you and a second later a song will come on and the next thing I know we are singing our lungs out together to an old school song, while laughing so hard we can hardly breathe. Thank god for those moments…. I need to be around people who make me laugh. Laughter really is the best medicine. For a few minutes a day, it makes me happy again.

I started Liam and Quinn in a camp over here today. They desperately need something to keep them busy, especially Quinn. He’s been really clingy to me which is understandable, but also not healthy for either of us. They both seemed to think it was o.k. and the will go back all week. I am hoping they will like it a little more tomorrow. I think it looks like a really fun camp, but I know for Quinn it’s just that he is separated from me and worries about where I am, what I’m doing, and if I’m coming back. He seems unsure about everything no matter how much I try to convince him that nothing is going to happen to me. What I really want to do is scream that he is absolutely right, that he is so fucking smart, that there are NO guarantees in life, and something could happen to me, as they could happen to any of us at any time of the day, because they can. Look at you, baby. My healthy, strong, baby boy who had this fucking cancer eating away at his body and nobody knew it. Quinn is completely right, completely intuitive, but that is not proper knowledge for an 8-year-old to know. It’s my job as his mom, to reassure him that everything is going to be o.k., when I know this in fact, could be a fucking lie. I am trying my best to protect the shred of innocence that your brothers have left. They have had to learn such a very hard lesson, one that a child should never have to learn. I have to make a choice with this lesson. I can either let it destroy them, or make them in to better human beings because of it. I am working on making them better human beings, trying to take losing you and the lessons that have come with it and turning it into something positive. It feels like such bullshit to me though because it’s not the truth. The truth is this is totally fucked and they shouldn’t have had to learn such a hard life lesson this way. All I really want to do is hide in bed, cry, and scream and let your brothers do the same. I can’t though. I have to go on, I have to give them what tiny pieces of me that I have left. I am giving them everything I have, but it is not much. They really are amazing little boys though. Such good, sweet, funny, smart, boys. Liam has the mind of a 30-year-old and Quinn and his memory that blows me away. I do find myself blown away during many points of the day over things that they say or do. Life has so quickly gotten ahead of me and it’s as if I cannot catch up, no matter how hard I try.

O.K. baby. I think I’m tired now. It’s 2:30 a.m. Ambien is kicking in. UGH. Once again I had so much more to say to you but just cannot do it tonight. Just know I miss you so much. I love you to the moon and back and hope you are safe. G’night my Ro baby. Love you forever.

xoxo

 

Yay! Awesome! Best 4th of July, EVER!!!! (bullshit)

 

Ronan. 4th of July is over baby. I’m still here. Quinn is sleeping in the middle of my bed and Macy is on the other side of him. I made it through today, by the skin of my teeth. I woke up this morning and went for a run with Macy. Well, kind of. She ran on the beach and a I ran along the bay. She went into town to get us coffees after and braved the madness of Coronado. I couldn’t handle it. We didn’t go to the parade this year, but Macy saw some of the action. She saw the Clonetroopers, Master Yoda, and some other Star Wars characters. I am glad I didn’t see that, as I’m sure my reaction would have been horrific. Macy would have had to carry me back home. After I finished my run, I came back upstairs to your Nana, Daddy, and brothers who had cooked breakfast. I wasn’t hungry, but ate a little fruit and some eggs just to get everyone off my case. We got showered and Quinn headed down to the beach with Nana and Macy, and I headed to the tennis courts with Liam and your daddy. It was really warm here today, but the tennis was still fun. Your brothers are both naturals. I think I need to get them signed up for lessons. I tried to act like I was really good and kept talking smack to your daddy about how I wasn’t trying, which is why I wasn’t playing well. UGH. Turns out, I am not that great at tennis. And I am pretty much good at every sport. Tennis is not one of them. I’m o.k with that. I’m happy to admit that your daddy totally kicked my butt today. It’s a fun sport though and we had a fun time playing. It meant a lot to Liam.

We headed down to the beach where we met up with The Kotaliks and 50,000 other people. The beach was packed head to toe with people everywhere. I was soon annoyed by all the drunken idiots and we packed up our things and left. No, today I was not in the mood to watch a 60-year-old man with his shirt off, drunk, and dancing to “Jessie’s Girl.” Sorry, but I just wasn’t feeling it. The whole being wasted in front of your kids thing really bothers me. I just don’t get it and it makes me sad. The same thing applies to smoking. Last night, I was waiting outside a restaurant with Macy, Liz and Heather. There was a mom crossing the street, carrying her Louis Vuitton bag, with her young kids walking beside her. She was SMOKING in front of them, just casually in the middle of Coronado. I have become so sensitive to the whole smoking thing that people CHOOSE to do; but to do it in front of your kids…. that’s just taking it to a whole new level. I made Macy chase her down just to prove that I was not just seeing things. I should have handed her one of your little bracelets and told her how you died of cancer at 3 and not by the fate of your own hands. Maybe then, she would have decided to stop smoking and maybe you would have saved her life and the life of those kids’ mommy. Because if you smoke long enough people…. pretty much sure you will die of lung cancer if you don’t die of something else first. Plus, not to mention what it does to your skin, teeth, nails, and breath. That is just foul.  And rude. And I don’t care if I’m judging because my son died of cancer and the fact that you people are here, roaming the earth, and harming your bodies, upsets me. Your body is a temple. Treat it like one! I know if Ronan would have had the chance to grow up, he would have never harmed his little body as he learned such a hard lesson as to what it means to live a healthy life. What a gift it is. He would have been so grateful and thankful for his chance to live his life. But he didn’t get a chance. He had his chance stolen away by something that was not his fault or his choice. Fuck cancer. And fuck cigarettes. And fuck drunk parents who drink in front of their kids, get wasted, and totally embarrass them in a restaurant.

I witnessed all of this stuff tonight and I had no tolerance for it. All I could think about while I tried to eat a few bites of my chicken taco at the mexican food restaurant, was how much I missed Ronan. I have the best picture of him from a couple of years ago…. 4th of July weekend where we were sitting down in the restaurant tonight and he was chowing down on a chicken taco. I wanted to be time warped back to that moment so badly. Instead, I sat and cried, watched my mom and Macy cry as the idiot family next to us continued to suck back drink after drink with their young kids around. They got really loud and the kids were mortified. I see things like this all the time now that you are gone Ronan. People who take so much for granted in life. I would have given anything to have had you in that restaurant tonight and I would not have wasted my time with you by getting drunk. I would have been the doting mom, I always was to you… to make sure you had eaten enough, and that your brothers were o.k. I would have had a hard time sitting still as you always kept me on my toes. That was so more than enough for me. I was so happy to play that role. I’m so pissed that role is gone now. I, of course get to play it with Liam and Quinn, but it’s not the same. They are independent enough that if I leave for a couple of hours they are fine with it and I am fine because I’m not worried about them. If you were here with us, you know I would have a hard time even being away for an hour from you. Because you would have only been 4 and a 4-year-old requires so much more than 8 year olds do. I missed you so much in that restaurant tonight that at one point I thought I was going to hyperventilate. We left in a hurry to get out of there and headed to meet Auntie Karen and the girls to watch the fireworks from her patio.

Coronado has the best fireworks. Remember them from a couple of years ago, Ro? You were 2 and we had the best seats in the house, right on the terrace by our condo. Tonight, the fireworks just made me sad. I found myself wondering if you could see them from where you are. Wondered who you were watching them with. I wondered who was taking care of you. Are you brushing your teeth? Are your fingernails getting clipped? What p.j.’s are you wearing?? I wonder if you are sad that you don’t have GiGi with you, because we kept it here with us. I wonder these things all the time. Who is doing MY job for you??? I don’t care who it is, because it is just wrong. Nobody should be doing these things for you except me. I need you to come back. I need you to make the most impossible thing in the world, possible. I NEED YOU BACK. We all do. Everyone is so sad, Ronan. So sad all the time. Nobody is handling this well. The only thing that will fix this is you. Somebody just needs to drop you off on our doorstep tomorrow and say they are so sorry, that this was all an experiment and that you are perfectly fine and healthy. My mind is so far gone, that I can almost make myself believe that it is a possibility that it could happen. You know what else my mind is trying to do to me??? I think the pain of having you gone is so intense that my mind is trying to trick me into thinking you never existed. That you were simply a figment of my imagination. I think my mind is going into protection mode and it is trying to make me think I made you all up. That you were never mine. That I didn’t have the most perfect little boy for almost 4 years. It almost convinced me yesterday. I had to stop and ask myself several times if you were really real. My mind is tying to make me forget you because the pain of having you gone is too much. I am aware of what it is doing, but it takes me a couple of seconds to form a memory of you to prove my mind wrong. You were real. You did exist. You were my best friend. You were my other half. You loved me. I loved you. Remember that time I was training for the NYC Marathon and you were about 2 years old?? I loved you so much and you loved me so much that we didn’t want to be separated for my Saturday morning training run of 13 miles, so I just put you in the jogger and ran with you the whole way. You were so content and happy because you knew it was me pushing you and we were together. I felt so blessed and lucky to have you with me. I’ll never forget that day… you hardly made a peep.

I had to take your daddy to the airport tonight. I was sad to drop him off. He was sad to leave us. After I dropped him, the tears started flooding down my face. I said to myself, please let a good song come on the radio so I can stop crying and blast the music. Oh hello, my little friend Ronan. Not 2 seconds later, a Prince song came on. You know, my all time favorite, artist, before he went all crazy and totally changed his music. It was an oldie but a goodie. “Erotic City.” You know I blasted that as loud as I could and laughed the whole time it was on. It could not have been a more perfect song to have come on. If it would have been something like, “Wind Beneath my Wings,” I would have totally driven my car off of the Coronado Bridge. Thanks for that today, Ro. Best song ever;)

I know I haven’t written in a few days and I’m sorry. I’ve been totally absorbed in the people around me. Your brothers, your daddy, your Nana, New York Miss Macy, Liz,  Auntie Karen, Olivia, and Liz’s friend, Heather. We have been doing things like playing tennis, having movie nights, some intense board game nights… I had a night out with Macy, Liz and Heather last night that was much needed. Innocent, girly, bonding time. We watched dolphins at the beach during sunset, had pizza, held hands, laughed, and cried from laughing so hard. These long days and night where I am all consumed with people make me exhausted by the time I get to bed. I’ve just kind of needed a break from staying up so late to write to you. I feel guilty about it too. I know h0w silly that is, but it’s though this writing to you that I still feel so connected. I feel like you know what I am saying and I don’t like the days that I don’t write and you have to miss out on what I am saying or the things I want to share with you. I know I talk to you all day in my head, but so much more comes out when I write it.

O.k. little bug. It’s 3 a.m. and I’m supposed to get up for yoga at 8 tomorrow. I told Macy tonight that I feel like my body needs an exorcism or something. Everything feels off. Everything is sore, tight, tense, and I feel like I have a ton of toxins in my body although I don’t see how that’s possible. I’ve been living off of humus and cauliflower. As well as prescription meds so maybe that could be part of it too…. I told her I think I need acupuncture or something. Everything is off. Even my run was off today. Boo for that. Tomorrow is a new day. Yoga may be the answer. We shall see, my love. Ronan. You know how much I love you. You know how much I miss you. You know how hard I am trying to be strong and it is SO hard. I will keep trying and I will never stop missing you so much that it hurts. That will last forever. I love you to the moon and back baby. I hope you are safe.

xoxo

Therapy in the form of Britney Spears

 

 

Ronan. Hi baby doll. I miss you. I fell asleep last night thinking of you and I didn’t even take my Ambien. I was so exhausted from crying, that I pretty much passed out as soon as my head hit the pillow. I was hoping to dream about you and I did in a way. The dreams I have now, that I remember, are pretty much the same theme;  just with different people involved. It’s always me talking about how you died and the people in my dream are always comforting me. I have yet to see you….. it’s always me talking about you. Last night, I had a dream I was at Dr. Campbell’s House and we were talking about you and your death. Everything in her house was white and there were animals everywhere and I remember she had really funky art everywhere. It was a very vivid dream and I remember every detail. The only thing missing in it was getting to see you. Maybe tonight you will visit me. I woke up feeling extremely hung over. I am sure this had to do with the 6 hours I spent crying over you pretty much non-stop last night. It was a release I very much needed. I didn’t want to get out of bed this morning, but I had too much to do, so I didn’t have a choice. The day went by pretty fast and I stopped by our house once to pick some things up. I went in, said hi to you, and gave you a kiss. I then returned back to the hotel where I am staying and was able to relax a little before my silly night out.

I did something tonight for the first time in a very long time. I had fun. And I didn’t feel guilty about it. I went over to Auntie Karen’s house and picked up our love, Liz, to go and do something very special to us. Something that will always be our sisterly connection and bond. Something that is a tradition to us. We went to the Britney Spears concert. We talked about you the entire ride out there. She still can’t wrap her 21-year-old mind around you being gone. I told her I know because I feel the same way. We both talked about how it feels like you weren’t even real. You were just too beautiful, too powerful, too strong, too wise, and we both said how you were unlike anyone that we had ever known on this earth. It felt good to talk to Liz about you and to listen to her talk about you to me. She loves you so much and you were crazy about her.

Once we arrived to the Jobbing Arena, we sat in the car for a while and watched all the people in their crazy outfits walk by. It was such entertainment and I finally found myself relaxing. I had mixed feelings about going tonight, but I am so glad I did. Dancing my butt off to Britney Spears’  “I’m a slave for you,” while Liz’s arm was intertwined with mine, is exactly what the doctor ordered. We danced, laughed, talked, sang, and it all felt good. I needed this tonight to remind myself that I am still alive. I’m not dead like I have felt for the longest time. Feeling alive for those 3 hours that we were there was so therapeutic. I told Liz how much you used to love Britney and how we used to dance to all of her songs together when we were doing chores around the house. She loved hearing that. After the concert was over, a huge thing of sparkly confetti was shot off into the air. It was all purple and Liz and I were covered in it and hysterical with laughter. We squeezed each other when we saw what color it was. Your favorite color, Ro. All for you:)

I’m going to get some sleep now as it is late. Thank you for showing me that it is o.k. to be happy even though I am so sad. Thank you for showing me that happiness will exist in my life once again. I can feel you pushing me with little signs here and there to make me smile. To make me feel something other than pain. I know you don’t want me hurting for the rest of my life, 24 hours a day. Thank you for the break tonight from this pain. I love you to the moon and back, baby. Sweet dreams. I hope you are safe.

xoxo

Learning how to live, half alive

Ronan. My heart is still heavy. My mind is still a mess. I didn’t cry today though. I have no doubt that my pillow will be soaked tonight when all is quiet and the memories of you trickle in. Night time is hard. I fall asleep and wish for you to wake me up with one of your famous, “Good morning, Mom!” You were always so excited for our days. Back when you were healthy I would pretend I was still asleep just so I could listen to you run to my room after you had woken up to give me a kiss and tell me good morning. It was one of my favorite things in the world. You would never want to get in bed with me and cuddle; instead you would demand that I get up to make your breakfast and wake up your brothers for school. I was always happy to do this for you. Everyday with you was the best day of my life. I can’t believe I will never have that again. I would give anything for you, Ronan. I remember how when I would take you out, how many people would stop me to tell me you were the most beautiful boy they had ever seen. I used to joke with Tricia that I felt like I was with a celebrity when I was with you. We called you our mini Brad Pitt baby. You had an impact on everyone even before you were sick just because of the beauty that people saw from the outside. They didn’t even know the beauty you possessed on the inside. I still can’t believe you aren’t mine anymore. I still don’t understand why you had to leave. I asked Dr. Maze if he thought that you heard me as I was talking to you before you went… those last few minutes when I told you it was time to go. When I told you to come with me, because we were getting out of this place. He says he thinks you did, as many people say a persons hearing is the last thing to go. I wish I would have said more to you. I wish I could have told you everything I was feeling in my heart but that would have been impossible. I know you know how much I love you. I will never get over the fact that I alone couldn’t save you. I’ll always think that I let you down because I couldn’t fix you. I know there was nothing I could do as your disease was so uncontrollable but that guilt will never go away. I am so, so, sorry Ronan. I would have traded my life a million times over for yours. I think about this every single day.

I’m not sure what just happened…. except for while I am writing to you I am of course listing to Pandora. I have it on the Coldplay playlist. Right when the tears where pouring down my cheeks, this random song came on. One I have never heard before but here are the lyrics…….

Come thou fount of every blessing
Tune my heart to sing thy grace
Streams of mercy never ceasing
Call for songs of loudest praise
Teach me some melodious sonnet
Sung by flaming tongues above
Praise the mount I’m fixed upon it
Mount of thy redeeming love

Here I raise my Ebenezer
Hither by thy help I’m come
And I hope by thy good pleasure
Safely to arrive at home
Jesus sought me when a stranger
Wondering from the fold of God
He, to rescue me from danger
Interposed His precious blood

O to grace how how great a debtor daily I’m constrained to be!
Let thy goodness like a fetter, bind my wandering heart to thee
Prone to wander Lord I feel it, prone to leave the God I love
Here’s my heart, O take and seal it, seal it for thy courts above

Whatever. I’m still too mad to think this is anything. But I will say that the piano playing this song was pretty. I miss you so much. I know I tell you this all of the time, but I will miss you for the rest of my life. I worry so much about you. I still cannot believe you are safe and happy without us. How could that be possible? I know I took better care of you then anyone. You deserve to be with me still. Your daddy watches me and the way I sit and am still with my thoughts. He knows I am tortured. I actually said to him that we made a mistake with your treatment. We should have done this, we should have done that, we should have been more aggressive. I know I am wrong about this. Nobody knew what was to come. Your daddy talked to all the best doctors and they all agreed with what we were doing. I told your daddy we should have had you scanned after every round of chemo. Nobody would have done this for us. But this is the only way we would have known that everything was spreading so rapidly. The day of your last scans, at Sloan…. Dr. Kushner’s face will haunt me for the rest of my life. He knew you were going to die. He couldn’t even look at me, Ro. Walking out of Sloan, they all knew you were going to die. But I wish they could have told me, instead of avoiding me and my tears. I don’t think badly of Dr. Kushner at all. If I saw him today, I would give him a great big hug and thank him for all he is doing to try to figure out this disease. I guess I’m just having a hard time because I feel like I didn’t get closure with him. I feel like he owed you more than the send off he gave us. But I also get that he is a man. A brilliant man and an amazing doctor. And I am sure he feels like he failed us and that is a hard pill to swallow. I get all that. But I also get that you deserved more, little man. Because you are going to change the world of this disease and I know someday he will be telling you thank you, Ronan. I will make sure of this. You will not be forgotten by him. And someday, I hope to replace a new image of him in my head from the awful one I am left with. I don’t want to carry that around with me forever.

I drew your name in the sand tonight while I was on my run. I went for a run on the beach in the dark. It is the only way I like to run now. In the dark, alone, where I don’t have to look at anyone in the eyes and I don’t have to see all the happiness surrounding me. All of that stings so badly. I don’t know if that pain will ever go away. We used to be that family. The perfect family that had it all. We had it all because of you. Now we are all so wounded, so empty. Although I did hear your brothers laughing today. I played with them all morning. I tried to stay focused on them, but my mind kept wandering back to how different everything would be about our day if you had been with us. Nothing about our day would have been the same; you changed everything.

G’nite my little man. Everyone is asleep now. Quinn is right next to me, all cuddled up with your blanket, GiGi. I’m going to cuddle up to him now. See you in my dreams, baby doll. I love you.

xoxo

Music to my ears

I’m feeling peaceful tonight. Today, was a very good day in terms of victories for Ronan. It started off with his little words this morning, “Mom, I have to poop.” Praise the freaking lord. It’s been 5 days of him not pooping and we have been giving him Miralax around the clock. I full on had a pooping party dance after my little man did his job. Victory! He was up most of the day, although still in a lot of pain. This morning, our sweet, “A,” from the clinic came by. She sat with us for a while and Ronan normally kicks everyone out, but he was so calm while she was here. He connects with her. Playroom Kathy from PCH also came by with so many Star Wars toys and the most beautiful Star Wars quilt which I am assuming she made. Kathy, it is so gorgeous. Ronan has been playing with his Star Wars guys on it all day. Love you so much. Thank you for sharing your smile with me today. I’m only sorry Ro missed it due to him sleeping. My sweet friend, Kristen, Kati, and Olivia came by as well. It was good to see them all. The usual peeps were here too. My mom, Jim, Luke, Heidi, Liam, Mimi, Papa, Auntie Karen, Trish, Stacy, Fernanda, Gay, and Pam. Christy and Heidi stopped by too with a ton of food. I’m feeling a little braver about seeing people so I ventured outside of our room. Ronan is so loved. I’ve never seen so much love for one little boy in my entire life. It makes me feel so happy.

We have been talking to Dr. Sholler about some other treatment options. I told you we are exhausting anything possible. We are talking about doing radiation on his leg. I’m not giving up yet if there is even the smallest amount of hope. I won’t travel far with him, but if this doctor is willing to see us in San Diego, we are talking about making the trip. We may start radiation tomorrow on his leg. Anything to help him with his pain. We are not committing to anything yet, as we know what the odds are. But we are not willing to close the door just yet. Ronan wants to be here with us and we are going to continue to fight hard for him until he lets us know otherwise. I will know, as his mama, when it is time to let go. It’s not time yet.

I got out for a bit tonight. I was nervous about it but Woody insisted it was fine. I had the chance to call back a couple of people. My angel, Charisma, is flying in this weekend for a quick visit even though she is bombarded with auditions. YAY FOR THAT!!!! Both her coming, and the auditions that are coming her way. I cannot wait to see her and am so grateful that she knows how much it means to me to see her. I called back my other dear friend, Susie, who lives in Colorado. All I had to do was say the words and she is now coming in for a quick visit this weekend as well. I don’t know how much time we have left with Ronan. Could be days, weeks, months….. praying for forever. Regardless, it means a lot to me to have those two see him. It will be good for me as well. It felt good to be out, tonight, breathing in the fresh air, as I sat outside with my dear friend who brings me much peace and comfort. I even managed to eat a taco for him.

I came back to the Ryan house and Ronan has just finished his platelet transfusion. Luke and Quinn were in the room with him and we all sat around together while Luke played music from my iPad for Ronan. Luke was being his normal, very animated self, and was singing and dancing out loud. I could not believe my ears when I heard giggles coming from Ronan. He has not laughed in at least a week. It was all thanks to Luke. I about started bawling. My baby boy is still in there. As much as he is hurting, he so badly wants to come back to us. I heard it in his laugh tonight. I will never forget that moment. Luke has been such a gift to us during this time. He brings our family so much happiness, especially Ronan. He is sleeping over at The Ryan House tonight, as well as the twins. We all need to be together as much as possible.

I’m tired tonight and as I said, I’m feeling somewhat peaceful. I’m going to try to get a little bit of sleep before Dr. Maze and everyone else kicks my ass. I’m not taking my sleeping medicine anymore, but tonight I feel like I can maybe sleep without them.

Somebody posted me this comment on my blog tonight. Loved it and wanted to share. Thank you, friend whom I do not know.

I read your latest blog “the next person that tells me…” I just want to say Sorry for those of us that are inconsiderate with our words and try to say things to make us feel better before we think of how they may affect you. I share your blogs on my facebook and ask my friends to pray for you. I wear a bracelet daily so when I see it I remember to pray for you often. My heart aches for you. My sister recently lost her granddaughter and posted this comment about people speaking, I thought you would appreciate it. She added your comment to her previous post to reiterate the impact of commenting before we think about it.

Before you speak…
by Connie Phelan Iddings on Tuesday, May 3, 2011 at 12:00pm
“Everything happens for a reason.You were given this because you were strong enough to handle this. God has a greater plan for your child. Your child wants to go home, where he belongs in Heaven, so just let him go. At least you had as long as you did with her and you have other grandchildren, at least you can be grateful for that. You’ll be a better, stronger person because of all of this. ”

These are comments given to a Mother whose child is battling for his life and to other Mother’s and Grandmother’s who have lost their babies.

Think about it. Seriously. Stop and think about it. To a Mom and to a Grandma, there simply does not exist any justifiable “reason” for our babies to suffer and die.

I am sure that God is taking care of our babes, but when you say God had a better plan, what exactly are you implying? That we somehow didn’t deserve our children-our parenting plan didn’t suffice while millions of others did? That God handpicked our babies to pluck out of our arms because he had a better plan? God is not cruel. His plan is to bless and not to harm us. (Jeremiah 29:11) I’m pretty sure it had very little to do with “God’s perfect plan.” I like how William P. Young author of The Shack puts it,

“Just because I work incredible good out of unspeakable tragedies doesn’t mean I orchestrate the tragedies. Don’t
ever assume that my using something means I caused it or that I need it to accomplish my purposes. That will only lead you to false notions about me. Grace doesn’t depend on suffering to exist, but where there is suffering you will find grace in many facets and colors.”

Never tell a parent their child is better off or tell a mother that her child wanted to leave her even to go to heaven, it’s like sticking a knife in her already broken heart. We don’t want our children to suffer. No good mother does. But, to add guilt to her grief by suggesting she is being selfish for going to any and every length to help her child survive and for wanting to hold onto her child as long as absolutely possible is unforgivable.

Don’t think for one moment that we aren’t eternally grateful for every millisecond of time we were given. Whether it is a few moments, or decades it matter not, our baby is now gone. We are grateful for all the yesterdays but we still want the tomorrow’s. We want our children with us today, right now and would give absolutely anything to have them.

Don’t get us wrong, we love and are grateful for all our children and grandchildren that are still with us, as we’ll also be for those we’ll be blessed with in the future, but that does not diminish our love or desire for those lost.

Please never, ever tell a grieving Parent or Grandparent that they will be stronger, better people because of the death of their child. No one wants to benefit from the death of a child. We know you mean well, but it plants thoughts in our mind like, “What if I was a stronger and better person to begin with? Would my baby have been spared?” Is that your intention? I highly doubt it.

Before you speak, pause to hug us and think. Tell us you are sorry. Let us cry and talk as much and as often about our baby without being made to feel guilty that you feel uncomfortable. Please don’t tell us that you think it is time we move on, leave that to the well-trained therapists. Our grief may remind you that we live in a world where children die before they are suppose to; a fact you may want to forget, but we don’t want anyone to forget our babies. We also don’t want anyone else to suffer needlessly if there is anything we can do about it. Therefore, we will keep talking about our children and about their death if we think it will help someone. It is important for everyone that we do.

We know it is difficult. Believe me, we know! We understand most people have no idea what to say or that some things are far more hurtful to say than they ever realized. I tell you now so that you will know. I, myself most likely said these very statements in an attempt to comfort others in their grief and offer answers for questions we all have, that there are simply no answers to-at least for now.

I close with a statement from a grieving Mother, “I love you all as always, as long as you don’t say any of those idiotic things…to me. Even if you think them, please don’t say them. They don’t give me strength at all.”

Strength is what we need and what we need more than all is your unconditional love. Before you speak, pause and just give us your love.

God Bless, my prayers are with you continually

G’nite to you all. Ronan and I love you to the moon and back.

xoxo

Super Ro to the Rescue!

Lazy Sunday. Ronan and I did not wake up until 10:30 here…. still on AZ time. We had both been up late the night before, enjoying the freedom of not having a roommate in our hospital room. Knock on wood. Still no roommate. We woke up, played and Trish came by with some food for me and to sit with Ronan so I could go and shower. I got out for a few hours and just caught up on some things, organized our room, packed my bags, and showered to get ready to return to the hospital. I had to pack up more than normal, as I won’t be leaving the hospital until Woody and the boys get in Tuesday night. Hoping my sanity stays in check without the little breaks I’ve been getting. I’ve got to stay strong for Ronan and it is only a couple of days. I am hoping the walls of “The Stanley Hotel,” do not start to cave in with visions of Jack Nicholson saying to me, “Heeere’s Johnny!” I don’t need any Johnny sightings.

What a busy day! After Trish left, which was awful but I held it together. I sat with Ronan and ended up bawling. I wasn’t intending on the waterfall of tears today but they came and I let them. Ronan sat quietly and watched me cry. He asked why I was sad and I told him because I was going to miss Tricia. He said he was too. After I pulled it together…. I don’t even know where the time went today. We did our normal routine of his bath and his Star Wars guys bath. We played everything I could possibly think of. We colored, brushed our teeth for a long time, did some laundry at the hospital, and waited for Ronan’s sweet nurse, Jenn to arrive. Ronan LOVES her. She is so so so so good with him. So thankful. It’s hard enough to be away from home but we are starting to form our little bonds here. Slowly but surely. Ronan is very careful about who he let’s into his little world. Jenn has passed the test with flying colors. She thinks Ro is the funniest, cutest kid on the floor. I couldn’t agree more 🙂 He is always messing around with her and playing jokes. He just may end up being a comedian when he grows up. The things that come out of his mouth are a riot.

We did our laps tonight around the hall for about an hour. We dressed up like superheros, took our guns and shot everyone in sight. Ronan was very animated and our entire mission was very detailed. He had very specific instructions on what exactly I was to do, and I was told I had to follow his lead in everything. I was more than happy to agree. After our laps, we came back to our room and did facetime on our phone with Woody, Liam and Quinn. It was so good to see my family and talk to my boys. I miss them so much. Tuesday cannot get here soon enough, for both Ronan and myself.

Our week is a busy one so hopefully it will go by fast and hopefully Ronan’s counts will start to rise and we can get the heck out of here! The big boys arrive Tuesday night, we have scans Wednesday/Thursday, and New York Miss Macy arrives Thursday evening as well. She is so excited that Woody and the twins will be here. I told Quinn tonight that his girlfriend was going to be in town and he just started giggling. I think he may have a little crush 🙂 My friend, Ellen and her daughter, Phoebe, are going to be at Sloan tomorrow for a check up so we will be seeing them as well. I cannot wait to give Phoebe a big hug. I haven’t seen her since December after she had finished her 17th round of chemo and she was finally discharged to go home. I just hope little morning grumpy pants decides to be in a better mood so we can have a nice visit with them.

Party room time is over. We are just now getting roommates. The privacy was fun while it lasted. We took full advantage of it. Ronan is still awake and it is after midnight. He is quietly playing Star Wars in his bed. I wonder if we will ever adjust to the 3 hour time difference. Makes no difference… it’s not like we really have a schedule.

Alright my friends. I’m going to try to get my little monkey to bed. I hope you all had a great weekend full of lovely things. Thank you for checking in on us. Thank you for loving our Ro. Sweet dreams!

xoxo

You belong among the wildflowers

I was telling my bestie today that I remember when I was a child and my parents used to watch the show “30 Something.” As  a little girl, I always thought the people on the show were so old and the show was really strange. I then told her how I wished I would have paid attention because then maybe, I would have picked up on the warning signs that being in your 30’s is hard. Or maybe it’s really not, and it’s only because of our situation, but is seems as if everyone around my age is going through something right now. Please tell me it gets easier…. because right now this is so not how life should be. WTF?? I also told her that I feel like someone just came along, took a look at me and thought, “Oh, hello. You’re life is too perfect so we’re going to give your kid cancer.” Just out of nowhere, BAM! This comes along. Really? Thanks a freaking lot. Couldn’t I have been hit with something a little less drastic? This is so not necessary. Trish and I both decided that if we were told that the world were ending tomorrow, we would believe it. It is the only explanation for all of this bullshit. I am laughing out loud thinking about something that happened after she and I hiked tonight. We were walking back from Camelback Mountain and we were almost to my house when some car comes flying out of their driveway and almost hit us. Tricia seriously had to grab me and pull me back from being hit by the car. We both then started dying laughing saying how we should have just jumped in front of the car so it could have hit us. O.K…. maybe not such a funny story as I sit and re tell it, but we were dying laughing. Totally kidding of course but I swear the only way I am going to get through any of this is laughing at as much stuff as possible. No matter how morbid it may be. Oh, bestie. How I love you so. I will tell you everyday of my life that you are my saving grace. I am so lucky to have you. Together we will get through all of this. I promise you this.

So, this weekend, as horrific as it was due to some terrible bullshit that has gone down; was absolutely lovely. Pain and sadness cannot be denied, but through all of the tears I see a soul being cleansed and renewed. It is amazing what can come of things when you are surrounded by the people who love you the most and who refuse to let you fall without picking you back up. This weekend was spent doing things that we used to do as a family before all of this. Hanging out, going to baseball practice, playing outside, movie night, eating out for breakfast. Such normal family things. It felt so nice because it has been so long since we have been able to really spend time together like this. Ronan is acting as if he is the healthiest boy in the world. He is full of nothing but giggles and smiles, love and light. He is so happy to be at home with his toys and his brothers. He happiness is infectious and keeps us strong.

I spent a lot of time outdoors this weekend doing what I used to do before all of this. I went on a 2 hour hike with Trish and Sarah yesterday. It was so therapeutic. I love nature, love being outdoors and the time with the two of them is always healing for me.  Then this evening I hiked Camelback with my Tricia Boo. Hiking Camelback is something we used to do all the time together. It’s our church and our special place. We got to the top, sat down for a bit, and I prayed my little heart out. It was so peaceful and gorgeous. I miss doing things like this so much. I’ve already made Trish promise that we will get back to how things used to be, as much as possible. I’ve got to have a little normalcy in my life and time spent with her, running or hiking is so good for both of our souls.

Ronan and I go to PCH to the clinic tomorrow. They will do the standard checking his blood levels to see how he is doing. I’m not sure when, but sometime this week we are flying out to NYC so they can check my blood and do his scans. You ready to hear step one of what we will be doing at Sloan for Ronan?? Here goes……

Full Title :
PHASE I STUDY OF ANTI-GD2 3F8 ANTIBODY AND ALLOGENEIC NATURAL KILLER CELLS FOR HIGH-RISK NEUROBLASTOMA
Purpose :
The goal of this study is to see if it is safe and feasible to give chemotherapy (topotecan, cyclophosphamide, and vincristine), natural killer (NK) cells, and an antibody called 3F8 to patients with high-risk recurrent or persistent neuroblastoma. 

The NK cells, a type of white blood cell, must come from a patient’s relative who shares half of his or her HLA proteins, which are immune proteins important in transplantation. Studies have shown that NK cells from a donor can be given safely and can be helpful in treating some diseases. These NK cells are collected from the donor and purified.

NK cells can recognize and kill abnormal cells in the body and can work together with antibodies to kill target cells. The antibody 3F8 specifically recognizes a protein present on neuroblastoma cells. Researchers have already shown that the 3F8 antibody can be administered safely to neuroblastoma patients. They want to determine the effects of the combination of chemotherapy, NK cells, and 3F8 antibody on patients’ cancers and bone marrow function, and how to maximize its benefits in treating cancer.

Eligibility :
To be eligible for this study, patients must meet several criteria, including but not limited to the following: 

  • Patients must have a confirmed diagnosis of high-risk neuroblastoma that has persisted or progressed despite standard therapy.
  • Patients must have a matched blood relative who can donate NK cells.

This is where we are starting. We will start this on March 21st and will be in New York for 5 weeks straight. We will then be able to come home for a 3 week break. To explain all of the treatments combined right now is too overwhelming for me. But I wanted to let you all know where we are starting off. Dr. Kushner has seen great results in the lab as far as this study goes and it’s been successful in kids as well. We are putting all of our trust into him. This has to be effective. We don’t need anymore bumps in the road, please. This is going to be tough on Ro. I know the 3F-8 stuff is painful. But he is so strong. If anyone can do this, it’s Ronan.

I hope you all are well tonight and had a beautiful weekend. We are so thankful for all the love and support through all of this. We are very thankful every second of our lives. Sweetest dreams to you all.

xoxo

Deep breaths, Patience and Xanax

Fork em' Devils!

What a long day. We don’t know anything yet but should know the results by tomorrow afternoon/evening. Now Dr. Eshun will meet with a team of doctors to go over the results of all the scans combined, with a fine tooth comb. Waiting is the hardest part. Sleep is going to be extra difficult tonight. UGH. I hate these nights.

Today, we started out at the clinic just doing Ronan’s normal labs. He needed to get blood, but we did not have enough time to do it before we had his MIBG scan. We will go back tomorrow for a transfusion as his counts were a little low. We did have some time to kill in between the clinic and our scan time so we went to the car wash and ran home for about 15 minutes. We then headed back to PCH to get ready for Ro’s scan. He was in a pleasant mood today and was excited as always to see Dr. Maze. We brought him a coffee and Ronan introduced Dr. Maze to his favorite show that he was watching on his iPad, Max and Ruby. Dr. Maze and our favorite of his helpers, Angela, were eating Ro up like always. We had some fun play time with them before it was time for Ronan to get his “sleepy medicine.” We did the usual, I held him, and Dr. Maze injected him. Ronan cried out his usual, “Mama, Mama, Mama!” I put on my brave face and gave Dr. Maze the look he knows so well now, which is, take the best care of my baby ever. I don’t even have to say the words anymore. He knows and he does. So thankful.

I walked myself out to the waiting room where Auntie Karen and Fernanda sat waiting for me. I am so glad they were there to keep me company today. They kept my mind occupied and I am so happy the two of them finally were able to meet. I am so used to going to PCH alone and by myself and I never realized how much work it is for me. Today, after Ro came out of anesthesia, Fernanda went and got my car for me so I didn’t have to walk all the way to the parking garage while carrying my bags and Ronan as I usually do. Today was easy and I am going to try to make myself take the help from my friends more often. It makes all the difference in the world. They kept my mind busy and my spirits happy. Thank you both for today…. I know I tell you all the time, but I love you so much. Ronan woke up a little grumpy and just wanted to get out of there asap. That is precisely what we did.

We came home to Mimi and Papa helping Liam and Quinn with their homework. Ronan was starving so I made him his favorite scrambled eggs and he scarfed them down. Woody came home soon after and we snuck out just the two of us for dinner. It’s been so long since just the two of us have gone out alone. It was nice to just sit with my husband and try to be as normal as possible. I caught myself laughing easily at his funny stories and we got caught up on our plans for the weekend. It was a very nice, much needed night together. My mom comes into town tomorrow until Monday and I am so very excited to see her. It should be a busy, fun, weekend <3

Fernanda sent me a text tonight that melted my heart. She said one of her little boys’, Brando, who is four, was at school today and a little boy asked him where his mommy was. Brando told the little boy that his mommy was at the hospital helping a little boy grow back his hair. That is one of the cutest things I have ever heard and filled my heart with so much joy. Fernanda is doing so much more than that; she is teaching me what it truly means in life to be an amazing person to the core. What it means to live a life full of passion, laughter, and love with just the right about sass to go with it. Fernanda is the kind of women who can light up a room with her quick wit and bright eyes. I told you she has the same sparkle in her eyes as Ronan and I find so much comfort in that. Even though what we are going through, sucks balls, I am so thankful for the beautiful souls that I am surround by. If not for this, I would be missing out on all the loveliness that has surrounded me for so long, but I just didn’t know how beautiful it truly was until now. Everyday is a combination of heaven and hell…. it’s a beautiful, tragic love story to the fullest.

Deep breaths tonight. Hot Yoga at 5:30 a.m. Yes, please. I will be there and I will be focusing all of my energy into my Ronan baby like I always do. We need some good news tomorrow. Please.

G’nite and sweetest dreams to you all. Love you for checking in on us and loving our little Ro so much.

xoxo

Holy Shitballs. Macy Wood makes me laugh like no other!

 

She knew I needed a laugh tonight so here she is, the infamous Macy Wood. All bundled up in her Fur, WTF? I have no idea what this thing is she is wearing but it is awesome and I want one. Love you, MACE! Thanks for the giggles tonight!!

xoxox