Ro Baby Steps

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

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

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

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

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

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

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

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

xoxo

Rain from Ro

Ronan. So many people made today, not an awful day. Friends, family, strangers and even you. As much as I was dreading today…. too many things happened for it to be anything, but beautiful. For as awful as I was feeling inside, there were too many things in the Universe, spinning around, not in my hands… making today bearable. I survived today and even made it though the day with a smile. Something I don’t do very often anymore. Something I miss doing so very much.

The day started off normally. Well, kind of. I was tired from not falling asleep until early morning. I heard Quinn come into my room around 6 a.m., saying he had a bad dream. I had just fallen asleep a few hours earlier. I wrapped my arms around him and we both fell back asleep. It was 8 before we woke up and I thought about just staying in bed and keeping your brothers home with me today. I knew if I did this, that it would not be a good day. I would have ended up hiding in bed, and not coming out. That is something your brothers do not need to see and I do not need to do. It only makes me feel worse. I got up, got Quinn up and we rushed to get out of the house before school started. We barely made it. I dropped your brothers off and went to Hava Java to meet N and Fernanda for coffee. I found a table outside, which never happens; as that place is always packed. Fernanda showed up and N soon after. I just happened to get a table right next to Susan Levine. She came to visit us when you were there. Gosh, she is beautiful. She knows, N and said Hello. I went up to her and gave her a hug and I thought I was going to have to remind her who I was, but I didn’t. She remembered. Even in my running shorts, no make-up, baseball hat self. She still recognized me as your Mom. I tried not to cry and thanked her for her amazing Ryan House. It was strange seeing her today, on your 4 months, but it felt like it was supposed to happen. Like it was meant to be.

I sat outside with N and Fernanda. We talked and caught up. N had to leave after a short amount of time due to a work call. It felt nice just to see her face. After N left, I sat with Fernanda and we talked about how I want to go back to NYC…. to have a few words with Kushner. We both know it will not do any good, as we are sure he is not capable of dealing with an emotional, angry mother. I don’t care if I don’t get though to him at all. I just want that man to look me in the eyes and tell me he is sorry. How he promised things that he should not have, and that when he couldn’t deliver, he abandoned us. He owes that to you, Ronan. I need closure. It is something that I cannot do without. It is part of my healing process. It may seem stupid and trivial, but it is important to me.

As Fernanda and I were sitting outside, we weren’t really talking, we were just being. I do this with her a lot. As we were both just being, we looked up at the sky. It started to rain. Rain in September. Rain from Ro. The sky opened up and I swear it was just over Hava Java as the clouds were nowhere else to be seen. Fernanda and I both looked at each other and just sat, held hands across the table and cried. We both know the rain was from you. You know how happy rain makes me. It is one of my favorite things in the world. I felt the little drips of the rain, on my lips and the tip of my nose. Kisses from you. It was such a perfect moment. So simple and filled me with a bit of joy. The fact that I had this moment while Fernanda sat across from me, made it even better. I know you saw the two of us today. You wanted us to know that you are still around and that you are taking care of us now. I really believe this to be true. We sat with the rain and it stopped after a few minutes. I didn’t want to leave but had to get on with the day. Inferno Hiking was waiting. It wasn’t much of an Inferno Hike today. You out of towners are going to laugh when I tell you how “Cool,” the temperature was. It was only 101 today so the Inferno did not exist. I cannot believe I am even saying that. Anywhere else, and 101 would be boiling. Not here. It felt chilly today as I climbed the mountain in that degree of heat and not the 115 that I have been hiking it in. I got to the top and sat down on my bench. I actually laid down and cried my eyes out all while watching the most amazing clouds roll in and the wind thrash back and forth. It was really windy up there today. I listened for you. I talked to you and told you I love you. I hope you heard me. I stayed up top for a good 30 minutes and ran all the way back down. Right as I was ending my run, The Bravery song that I played for you last night, came on. So funny. So fitting. So you.

I came home, showered and the doorbell rang. I went to answer it and it was a delivery guy with the most gorgeous purple flowers. A card was attached, and said something about making this day brighter, but no name was signed. So, I have no idea whom these flowers came from today but I am going to say Thank You, anyway. So thoughtful, sweet, and made me smile. They are gorgeous. What’s even more gorgeous is the fact that somebody out there sent me these flowers, without needing me to know who they are. I love deeds such as this. That says so much about a person. So, lovely stranger or friend. Thank you for your kindness today. I love that no recognition was needed. But I’m still dying to know who sent them! If you want to tell, feel free to send me a little message;) If not, that’s o.k. too. I totally understand.

I headed over to see Katie at her boutique. I brought her a Green Tea from Starbucks and a slew of bracelets. She said her phone had been ringing off the hook all day and her email was flooded with requests for your bracelets. I could not believe it. I am still in awe of the support and love that is coming from all of this. I sat at the counter, while she rang up customers. I am surprised at how much at home I feel in Katie’s store and with her. I hardly know this girl, yet her store feels like a second home to me. So strange. I feel like I’ve known her my entire life even though I only met her last week. I am such a skeptic of people too and their intentions. I feel only good vibes when I am with Katie. I know she is helping me because she is just a good-hearted person; not because she wants anything from all of this. She has nothing to gain, she has no reason to put herself out there to gain anything. Her intentions are so true and pure. I love this. As I was sitting at her counter, while she was gift wrapping something for a customer, guess what came on while I was sitting there? Stevie Nicks, “Landslide.” I just looked at Katie and gave her a hard time about putting that song on, on purpose. We both laughed and then the tears started to well up in my eyes. We just kept staring back and forth at each other, both getting teary eyed, while trying to keep our composure in front of her customer. Katie yelled out, “O.K. I can’t even look at you right now.” I just smiled and wiped my tears away. It was such a funny moment. I left there shortly after to grab your brother and cousins from school.

I had a crazy house full of boys. Wild, funny, happy boys. I had 4 of your cousins over to play. 2 of them are staying the night. It’s been a really great night. I love nothing more than being surrounded by kids. It’s my happiness. I took your brothers and cousins to basketball practice. Your daddy is coaching their team again. I watched my two little hoopsters and what amazing players they have become. You would be so proud of them. After practice, your Daddy went to the ASU football game. I took the 4 boys and we decided to try a restaurant, “Beckett’s Table,” for dinner. We have wanted to try this place out for months now. I was so excited to go somewhere new, with my date of 4 boys all under the age of 8. All the boys were really excited too. We sat outside in this amazing weather and had the best service. A really sweet server came out after we had been there for about 30 minutes. We were the only one’s on the patio, eating, but she came out to say Hello and to tell me that she reads this blog. I was surprised, as I guess I kind of forget that I’ve put myself out there in such a way that strangers recognize me. I gave her a big hug and told her thank you. She asked if I Inferno Hiked today and I told her yes. She than said something about how she felt so voyeuristic about knowing all of this stuff about me and asked me if it felt weird. I told her I honestly didn’t think about it at all and I still think that I am really only writing to you, and that nobody really reads what I write. I told her how much I appreciated her coming up to me and saying hello, because I do. So many people won’t and that just sucks. I would rather have someone tell me they are sorry than say nothing at all. As I was gathering up the 4 best dates in the world, we walked out of the restaurant and I smiled and said thank you to the people who were standing by the kitchen. One of the managers chased me out to tell me that our dinner, was on them tonight. I tried to put up a fight but she just was not having it. I wanted to cry but I put on my brave face and told her thank you so much. The kindness of this big city, is really something remarkable. The chocolate covered bacon was amazing. Actually, everything was amazing. Thank you, Beckett’s Table tonight. It was truly one of the best dinners out that I have had in a VERY long time. We’ll be back, for sure:)

I missed you today and tonight, Ro. In everything I did. Even driving in the car. I looked in my rear view mirror today, at the place where you used to sit, behind me. It was empty and felt so wrong. I almost had to pull the car over to throw up. I can’t believe I don’t have you behind me anymore, throwing things at my head, squeezing toothpaste that you had found, all over yourself and smearing it on the windows. This is so fucking wrong. So unfair. So permanent. I still can’t believe that you are never coming back. I still feel like your Daddy is going to come bouncing through the doors with you. I still feel like I made you up in my head, because the pain of knowing that you were here, and are now gone, is just too much. People say this gets easier over time. I’m here to tell you, it does not. 4 months later, and the pain is worse. Your Daddy agrees too. Time does not heal wounds. If you survive something like this, you just learn to live with the pain. You learn to fill the holes here and there, but there will always be a big chunk of your heart missing. That is a fact. It does not get easier, you never forget, the pain does not become less over time. It stays with you, every second of the day until you just becomes used to it. It is just a part of the person you are. Pretty soon, you are so used to the pain of all of this, that you don’t remember what it felt like before. It is as if you have felt this way your entire life. Well, this is my experience anyway. To each his own.

Time to go baby. I love you to the moon and back. I hope you are safe. Sweet dreams, baby doll. I love you so very much.

Goodnight my lovelies. Thank you to everyone who texted me super early this morning to say they were thinking of me, for all the phone calls, FB messages, emails. smiles, hugs, random flowers and a really sweet dinner. I am in awe of all the love that surrounds us thanks to Ronan. Love you all.

xoxo

Crazy Cat Lady

Ronan. I’ve been quiet today. Which you know, are my most painful days. I didn’t sleep well last night. Woke up at 2:30, a.m….. watching the clock. Paced around the house. 3:30 a.m. was here before I knew it…. close to the time you passed away. I managed to go back to sleep, woke up around 5 a.m. ready to start the day, but did not get out the door for boot camp. Did some things around the house instead. I got ready for the day ahead of me, which was a total freaking blur. I don’t even know what went on. I’m like a crazy Cat Lady now. The crazy Cat Lady who lives alone, with 50 Kitty Cats in her house. Meow.

Except for the cats that surround me all day long, come in the form of notebooks, journals, books, pieces of paper, post it notes…. I take these things with me everywhere. I write, all day long. Lists, things to do, things to not forget, random words, names of songs, feelings, thoughts….. I write at stop lights, in the middle of the grocery store, while I’m waiting to pick the boys up from school…. I don’t even know what half of the shit is that I am writing. Maybe someday it will all come together, but for now, it is one big flood. I’m drowning in my words and the flood cannot be stopped. I hope it is healing, but only time will tell. Until that time comes, I am content to be the Crazy Cat Lady.

I remember thinking today, that I needed to get my passport picture retaken; as my passport has expired. I decided it was a great idea to go to Kinko’s to get it done. So random. Your Daddy called as I was in route. I told him what I was doing. I told him I was going to get my passport picture taken. He asked where I was going that I would need my passport. I wanted tell him, that I was going crazy. Instead, thoughts of Africa, Thailand, and Vietnam flashed across my mind; but I didn’t tell him that. I have been blabbing about going to Vietnam with Trish for about 6 months now. Mostly just to get a reaction out of your Daddy. I don’t have any concrete plans to go anywhere, as of now. That could all change, tomorrow. Why can’t I go to one of these places? I have decided that I hate the word, “Can’t.” I wrote this tonight to one of our lovies, who was saying that word. I called Bullshit on that word. Because it is. I think I said something along the lines of, “Life is too short. Stop saying you can’t. You can do anything you want, because you are alive. Ronan CANNOT, because he is DEAD. You are not.” It is true.

Sometimes I don’t know where my bluntness comes from, but then I remember you. You were so bold, blunt, and true to yourself. I am finding little parts of you, just live inside of me. I really do feel like your spirit went back into my body some days. I felt like that today, which is another reason my body/mind just seems to shut down and just let’s you take over. I just let you guide me as I kind of float through the days. I never know where you will take me, or what we will embark upon together. But I am ALWAYS up for the journey. It’s just you and me, baby. Just like we used to say, back in the day. Back in the day; that feels like so long ago. I feel like you have been gone, for 4 years, not almost 4 short months. What the hell is that all about? Is it because of how much I miss you? How much I long for you every second of the day? It has to be. I feel like I’ve been trapped in this world without you forever, when the truth is, you left this earth such a short time ago.

I am suddenly so tired now. The girls(Stacy,Trish, Fernanda) came over tonight because Daddy is working late. Stacy brought a bottle of Melatonin. I told her I’d try anything to get off of this Ristoral. I asked her really, how many I could take. 10?? 20?? The bottle says 1. We decided I could take 2. I doubt anyone has ever died a Melatonin overdose. I’ll have to Google that one. I think I’m o.k. with taking 2, except for it’s made me totally sleepy.  Yummy. I miss sleepiness.

I’m giving in tonight. I don’t think I can write about the rest of my day. Except to tell you that I missed you with every inch of my body. From my lips to my toes. Oh. And tonight, when I hugged Fernanda goodbye, I kissed the inside of her neck. For one second, I felt like I was kissing you, as that was always my favorite place to kiss you. I always kissed you there and told you I was getting some of your sugar. I got all teary eyed as wasn’t planning on kissing the nape of her neck…. but I did, and it reminded me so much of you. I love you baby boy. I love you to the moon and back, forever and ever. I hope you are safe. G’night my love. Sweet dreams.

xoxo

 

Don’t stop believing

Ro baby. I looked for you all day. I was so sure you were going to wake me up this morning, as you have done every morning for the past almost 4 years. I woke up with a big, strange person in our bed. It was your daddy. I kept waiting for you to pop out in between us, but you never came. I got up, showered, and got dressed. I waited for you to come in and ask for me to put on some of my sparkly lip gloss that you liked to cover your face in. I waited for you to ask what it was that I was putting on my eyes as I applied my mascara. I waited for you to ask me to give your star wars guys a bath and for me to give you my hairdryer so you could blow dry them. You never came.

Quinn needed a haircut today. I got in the car and drove him to the barber. I looked for you in my rear view mirror, sitting back in your carseat. You weren’t there. Somehow, I got Quinny safely to get his haircut. I’m not sure I should have been driving today as everything is really foggy. My friend, Melissa came and sat with me. I told her how I needed to go to Nordstrom to return some of your Paul Frank underwear that came in the mail and to get Quinn and Liam some shoes for your service on Sunday. She came with me. She helped me get the sizes for your brothers shoes as my mind would not focus today. Everything is a mess. Everything except me. I’m o.k. Remember how a couple of days ago, I was hovering over you and I was crying?? You looked at me and said, “Mom, stop being sad.” You would be proud of me. I’m not sad yet. I’m trying so hard to make you proud. I am scared for the day when all of this hits me and I realize you are really gone. As of now, this all just feels like make believe. I still feel like this is just a trick or a nightmare that I cannot wake up from. Your daddy has been crying a lot. I wonder if something is wrong with me as I am not grieving yet. I’m numb to everything around me.

After I dropped Quinn off at home, I went to my hair appointment. I sat in the chair and was quiet for the most part. Katrina, who shaved your little head, gave me a big hug. She let me sit and just be with my own thoughts but we talked about you for a little bit. I got teary eyed, but did not cry. After my hair appointment, I went to see Dr. Maze. I brought him a coffee in your honor; but it was from A.J.’s and not Starbucks like we usually used to bring to him. We sat in his office for a long time. He has a picture of you up in the middle of his bulletin board. He misses you. I didn’t cry when I sat with him either. I never seem to, as you know he always has given me strength. He has become one of my best friends. Even though he is just a really old man 😉 We laugh about the day that I will push him around in his wheelchair. He told me his mum will look after you now. I had a dream about him saying this to me. That his mom would look after you now. I had asked him this in real life in a text message and he didn’t answer me back. But I dreamt he did and that is what he told me. I asked him today if I dreamed that or if he really had said it. He said that I had dreamed it, but that he knew she would be looking after you. That gave me peace because he loves her so much. I know she will take good care of you until I see you again.

After I left Dr. Maze’s office, I came home and helped your brothers get ready for their baseball game. They played so well and it was such a beautiful night. I kept looking for you on the playground, but I couldn’t find you. Then I remembered, you are gone. Since you’ve been gone something funny has happened everyday. That song by Journey, “Don’t stop believing,” has been playing in the background each day. Tonight, I heard it at the ballpark and it stopped me dead in my tracks. 3 days in a row I’ve heard that song. So weird. I know it’s you. It’s one of your little signs. I will never stop believing in you. At the ballpark, your brothers played an amazing game. They are happy, but they miss you a lot. Quinn was having trouble hitting the ball at one point and I asked for you to help him. I said, “Come on, Ro. Help your brother out.” You did. He hit it out of the park. Your dad and I stood together and talked about you and how you were always so proud and always held your chin up high. You achieved a lifetime of dignity in your 4 years of life that most people never achieve. Even when you died, your chin was held high. You are such an amazing little boy, Ronan. I am so honored I am your mama. I’ll never forget some of your last words to me. “Mama.” Me: “Yes, baby.” You: “I love you.” Me: ” I love you more, Ro.”

Tonight, we rode our bikes over to Uncle Jay’s house so Liam and Quinn could go swimming. I looked for you on your little bike next to me, but you weren’t there. Liam and Quinn swam in the pool and played basketball. I heard them laugh and looked up at the moon to tell you that I love you to the moon and back. I wish you could have been with us. Quinn took big fall on his bike on our way home. His little foot was so bloody and scraped up. We got him home and I thought of you and how brave you have always been. I tried to channel some of your braveness into Quinn. We got home and I did my first load of laundry since you’ve been gone. It was so weird. I still cannot go into your bedroom. I’m saving it for that special time when I know I am ready to fully succumb to this nightmare. I will use your room as the place where I can fully breakdown; when it is my time.

I’ll never forget how you looked hours before you passed. I could have sworn I saw your little eyes trying to form tears. I know it was because you were so sad to leave us. I hate thinking of you sad. I’m trying my hardest to block this memory out and think of you at your happiest times. The times that you were with us and such a carefree, healthy little boy. These memories will keep my heart warm for the rest of my life, baby.

I have to go now. Fernanda and Stacy are here and we are going to go over the way we are honoring you on Sunday. Even though we will honor you for the rest of our lives, baby. I love you, Ro. See you in my dreams.

xoxo

Where is Ronan?

Somehow, I am in my cozy bed at my house. I cannot get out of my bed. It feels like quicksand and even when I try to get up, it pulls me back down. My house and heart feel really empty. I hear people, but the biggest voice of all is missing. “Where is Ronan?” That is what I asked Woody. He just starts to cry. But really, where is he? Is he playing in his bedroom? Is he in the backyard? Is he causing trouble and running about the house? Is he playing Star Wars with his brothers? Then I remember. Ronan is gone.

Ronan really left a couple of days ago. His pain got really bad from his little liver failing and all we wanted was to keep him comfortable. The Ryan House was quiet but full of the people who are our family. Charisma spent the weekend, Susie came, Gay, Melissa, Stacy, Bethany, Tricia, Sarah, my mom, Mimi, Papa, Uncle Scottie, Auntie Karen, Aubrey, Marisa, Danielle…. I cannot remember who else. Mother’s Day was quiet and I stayed by Ronan’s side most of the day. I whispered a lot of things in his ear and although he was not responding much anymore, I know he could hear me. I told him all the things that filled my heart. How he was the best thing to ever happen to me, how he changed my life, how it was time to stop fighting, and just relax because I was going to take care of him forever. I sang to him, loved on him, and said our famous little thing we always said to each other, “Just you and me, baby.” As I sat next to him I prayed so hard. I asked for a few things. I asked him to please not leave me until Fernanda returned from her trip, I asked for him to please not leave me on Mother’s Day, I asked him to leave peacefully in the night, with me by his side. I begged the Heavens above to not be cruel in the way that they took him. He had enough and I wanted him to go in the most peaceful way possible. For the first time in his life, my little boy listened to everything I asked of him.

Quinn spent most of Mother’s Day curled up beside Ronan. I explained most of what was going on to him. He wanted to know why he couldn’t understand what Ronan was saying anymore and when he would start talking normally again. I told him that he was so sleepy, that he wasn’t going to be back to the way he was anymore. Quinn cried and slept most of the day away by Ronan’s side. He needed to have his time and his goodbye with him so I let him take all the time he needed. It was hard to watch my almost 8-year-old hurting so badly but it was a chapter that he needed to close in his life with Ronan. I wasn’t about to push him away. I talked to Liam about staying at The Ryan House with us or going home. He said he wanted to stay to be with Ronan and us. I told him how Ronan was not going to get better and that he needed to say his goodbyes. Little tears filled his eyes and he said he knew, but he still wanted to be with his brother. After 8 months of shipping my twins off I had decided that enough was enough and they would stay with us as long as they wanted. Fernanda had a firm talking to with me about this decision. I told her I would meet her halfway and only let Liam and Quinn see so much and how they would not be allowed to sleep in the room during the night with Ronan and myself anymore. They would have to sleep with Woody in the room across from us. She seemed happy with that outcome.

After a quiet Mother’s Day, night soon filled the air. I slipped out and let Mimi and Papa lay with Ronan and I tried to calm myself as much as possible. I was panicking, trying to come up with what I could do to save him and his little body that was failing. I asked for oxygen to be placed by him, to help with his breathing, I texted back and forth with my friend, Doriet, whom just lost her little girl. She was giving my ideas on ways to save him. I talked to my friend, Diane, who lost her little boy to this nasty disease years ago. I said things to her like what if he really didn’t want to go, but was fighting to stay alive and I was just pushing him down with all the pain medicine. She calmly talked me off the ledge and told me that the cancer had invaded his liver and there was nothing medically we could do to save him. I was still fighting for him, even though I knew he was ready to go.

I sat in the Sanctuary room with the girls for about an hour last night. Fernanda, my mom, Melissa, Sarah and Tricia. We had a lot of laughs and Sarah told us how she was getting a purple star tattoo this Thursday, on Ronan’s birthday. Before I knew it, everyone in the room had decided to go with her. This made my heart happy as the love of the people surrounding me is unbelievable. They truly are the most amazing girls alive. Around 10 p.m. it was time for me to get back to Ronan so everyone left except Fernanda who said she would stay and watch Ronan sleep so I could get some rest. I had the twins come in and kiss Ronan goodnight and I curled up beside him. I whispered little things in his ear and sang to him. I fell asleep as I could relax a little knowing Fernanda’s watchful eyes were on him. His breathing was becoming softer, his little feet were becoming so cold. Fernanda sang to him and rubbed him. I fell in and out of sleep. She left the room about 3 a.m. and the nurse taking care of Ronan patted me around 3:20 a.m. Ronan was ready to leave. I said to her, “Is he gone?” She replied, “Almost.” I grabbed on to my baby boy, whispered in his ear that I loved him, but it was time to go so he needed to come with me. I kept saying, “Come with me, Ronan. Let’s get out of here.” The nurse went to get Woody and when he got to the room, he kissed Ronan goodbye and that was that. His little heart just stopped.

Somebody came in asking if she could bathe Ronan with warm water and if we wanted his clothes changed. Woody left the room to make phone calls and I asked if I could please give him his bath. She said of course and brought me everything I needed. I stripped him down and washed his little body. I remember looking up at her and saying how no mother should have to do this. She replied, “You’re right. You are very brave.” I remember thinking to myself how I couldn’t believe I was giving my dead child a bath. It was so weird, yet so peaceful. I put on his favorite red Small Paul monkey pants, his Star Wars shirt and little Ralph Lauren socks. I kissed his cold little lips a dozen times and kept thinking I couldn’t believe I wasn’t ever going to be able to kiss them again. Woody came into the room and we sat I just stared at our son. We cried, held each other while looking down at his little body. I kept feeling him and kept telling Woody he was so stiff. It was all surreal to say the least; but I felt like Ronan was right there with me. Just because the shell of his body was gone, his spirit was still in the room. It has been with me the entire day which is maybe why I feel so at peace.

Leaving the room was the hardest part. Woody said his friend that he went to high school with was waiting outside as they were ready to take Ronan away. I told him that I wasn’t leaving him and he grabbed on to my arms and tried to pull me away. I cried that I promised I’d never leave him and it took awhile for Woody to convince me that he was already gone. I went and kissed his toes, lips, and pinky fingers one last time. I walked out of that room and went straight into the arms of Woody’s friend, Ardra, who runs the mortuary. I held onto her and told her to take good care of my baby boy and not to leave him. She cried with me and promised she would. I walked away before I saw them carry out his little body. I went into a room where my mom, Kay, Charlie, Scottie, and Auntie Karen waited for Woody and I. We sat for a while and no words were said as they were not needed. Woody and his family went to pack up our rooms and I sat with my mom and Karen. We talked quietly about what had just happened. We talked about Ronan and his life and how he had inspired so many people. That little boy taught me more in his almost 4 years of his life than anybody I have ever known. He was the proudest, most beautiful child that has ever touched this earth.

After Ronan’s body left The Ryan House, we had to go and wake up the twins. I quietly tapped Liam and told him it was time to go home. He was confused and I did my best to explain things to him. Woody picked him up and carried him out of the house. I snuggled with Quinn a bit and woke him up and said the same thing. He wanted to know if Ronan was coming with us. I explained to him that Ronan would not be with us anymore. He cried and it took awhile to get him out of the bed. He said he needed more time and I gave it to him. I had Ronan’s “Gigi,” in my arms and I gave it to Quinn and told him he could have it now. He wrapped it around his shoulders and I told him he could go into the room where Ronan had been and kiss his pillow. He did so and also laid down on the bed where Ronan had been hours earlier. I let him take his time and Woody then came and carried Quinn out into the car. The four of us drove home together as the sun rose. Ronan’s car seat was no longer in my car and I sat with Quinn on my lap and watched as Liam sat in the back as the tears poured down his little cheeks. We talked a little bit on the way home about Ronan and how he was no longer hurting and how peacefully he went to sleep. We all stumbled in our house and I insisted that we all lay down together and get some sleep. Liam tried to go to his room, to be alone but I told him that was not happening as we all needed to be together because we were all hurting. He listened and snuggled up between Quinn and Woody. I took some sleeping medicine and passed out for most of the day.

I sent my Mr. Sparkly Eyes a text and told him how I could not get out of bed. I asked him how I was ever supposed to face the world again as I never went anywhere without Ro, my little partner in crime. I don’t know the answer to this but I know Ronan will help me in everything that I do. He will guide me for the rest of his life just like he did his entire existence. Nothing I do will be without Ronan’s help and the love that we have for each other. It is eternal.

I know I don’t want to end this story. I want it to go on forever. I want Ronan to never stop inspiring you all just because he is gone. I want his name and our love story to live on forever. I want to keep writing to all of you. I hope that is o.k. I’m not sure what I will write about as that child was my life. But just because he is not here, does not mean our story has to end. He is with me and will continue to fill me with his love everyday. His love alone will keep me going and strong. I will not crumble up and die because he is not here. I will not let him down and I promise to make him so proud of me as I know he is watching everything that I do. Those eyes will forever be burned into my soul, the smell of his sweet skin, the touch of his perfectly plump lips and his little giggle will never be forgotten. My twins will be better boys because of him, my marriage will be stronger, and I will never take a second of my life for granted again. I would give anything to have him back and I don’t know if it has even hit me that he is really gone. I find peace in knowing that he is no longer hurting but cannot deny that my heart is broken beyond repair. All I want is my child back. My healthy child back before all of this.

I feel very angry and let down by a lot of people; but mainly by medicine and the doctors of the world who have not figured out this nasty disease. Mostly life in general as I have learned the hardest way how cruel it can be. Watching my child die from Neuroblastoma t was the most horrific experience of my life and nobody should have to go through that; especially in this day and age. I made a promise at the beginning of all of this to help find a cure and now I am more determined than ever. A cure begins with awareness and funding so I am going to work for the rest of my life on that part of all of this. All in the name and honor of my Ronan Sean Thompson. The brightest star in the sky.

I cannot thank all of my friends and family enough for their love and support through all of this. I would not be in such a peaceful place without them. I have no doubt that Ronan’s journey is not over… it will just come in a different form now. I cannot thank all of you who have been following me this blog and spreading the word about Ronan. We love you all so much. If you see me, please don’t be afraid to come up and tell me hello and hug me. Please don’t be afraid to tell me how sorry you are because of the pain you know we are all in. But please, don’t tell me things like God has a bigger plan for Ronan, how he belongs in heaven, how he is happy with God now…… because all of those things just piss me off. And I will punch you. I will never come to peace with any of those fucking saying and unless you have just walked through my exact shoes, you have no right to say those things. I understand if it is how you will make sense of all of this but to me, you can’t make sense out of nonsense and that is exactly what all of this is. Complete and total nonsense. This will never make sense to me as I know our family did not deserve any of this pain; especially not Ronan.

That is all for tonight my loves. Goodnight to my sweetest baby boy; Ronan Sean. My little seal, my little monkey, my little everything. I love you to the moon and back a million times over.

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

The next person that tells me Ronan wants to go home, to heaven, can piss off

Holy Fuck. How did I get here? I’m at The Ryan House; the most beautiful place we have been so far on this journey because my son is going to die? And everybody knows this except me? Am I in that movie, “The Truman Show,” where everything is just pretend and I’m some experiment being watched to see how I’ll react to everything? Please, please, please, somebody tell me that’s the case. I don’t think it’s even hit me what is going on, why we are here, and why everybody has been crying, until now. Until I stepped outside tonight to get Woody some things from his car and in the room across from us was a baby who was on the verge of her last breath and I stood and watched while it was happening. The door was open and I could not look away. The nurses were crying, parents, family, everyone was hovering over this baby. They were preparing for her to take her last breath. In that room, I saw myself, huddled over Ronan, begging him not to go. Is that my future? Does everybody know this except me? Is this the reason that The Ryan House was full of my friends and family today, and when they all came into Ronan’s room they could not hide their tears. Am I the only one who thinks this is not going to happen?? Even though I am hearing whispers of he has days left. Who are they talking about? Couldn’t possibly be Ronan. He gave me the biggest smile today and told me he loved me to the moon and back. So what if he cannot walk anymore because his legs hurt so badly. I can fix that with Radiation, right? Just like I fixed his arm. So what if he is not wanting to eat anymore, I can fix that too with his all his favorite things like Strawberries and Whipped Cream. I can get him to eat for me. I sent Woody and Fernanda a list of people, resources, other doctors to call today. Woody has been on the phone all day. I’m not accepting this until I hear there is nothing more to do from 100 different people. I’m not giving up. I am his mom, I can fix anything. That is my job and I refuse to fail.

I have not been outside in a couple of days I think. Tonight, I found myself on the patio, curled up on the phone, bawling to my Mr. Sparkly Eyes. I don’t think I screamed, but I remember sobbing and listening to him cry with me. I told him over and over that I cannot have Ro leave me, I cannot live without him, please make it go away. He told me I could yell at him, how sorry he was, and begged me to sleep as I cannot remember the last time I really have. It’s been a couple of days I think. I told him how could I sleep, how could I possibly close my eyes, what if I missed Ronan’s last breath?? I will never forgive myself. I’m not going to miss any time that I have left with him although I forced myself to come outside and write tonight while Woody sits with Ro. You see, if I didn’t, I was on the verge of packing up all of our stuff and getting Ronan out of here. Maybe if I take him away from The Ryan House, he won’t die. My thoughts are not rational, but they seem realistic to me and I could seriously see myself grabbing him and never looking back. I don’t want him to die here. Even though everyone is insisting this is where we should be. I want to be home with him, where he is safe and none of this is real. Being here, magnifies everything by a billion. I don’t like the look of all of the sweet nurses, doctors, and whomever else has been hovering about. They all have the same look of pity, sadness, and no hope. I get the feeling they don’t see miracles happen very often with children that come in here with cancer. Why can’t Ronan be that miracle? Why is that asking too much? We are nice people, we deserve a happy ending. There will be no happy ending of this story if my baby is ripped out of my arms. What will they do with him? Where will they take him? I’m not letting him go. They will have to pry my arms off of him with a fucking bulldozer. I’m not letting him go. Call the fucking psych ward because that’s where I am going to end up if this all goes down the way everyone thinks it is going to.

“Everything happens for a reason.” BULLSHIT. “You were given this because you were strong enough to handle this.” BULLSHIT. “God has a greater plan for Ronan.” Bullshit. “Ronan wants to go home, where he belongs, to Heaven.” MOTHER FUCKING BULLSHIT. Who the fuck came up with these sayings because the next person I hear say them to me is going to get punched in the face. They may be true if death is not outcome of this. But if it is, then I am going to write down those sayings on a piece of paper and burn them to the ground. Please think before you speak those words. They are the sickest things I have ever heard. Ronan Sean Thompson does not want to go home to heaven where he belongs. I can guarantee you with my life that he wants to stay at his home, in Phoenix, Arizona with the best mommy, daddy, and brothers alive.

I somehow stayed so strong today, even with people buzzing in and out, wiping the tears from their eyes. Stacy, Pam, Heidi, Tiffany, Jennifer, Sharon, Marcia, Auntie Karen, Sister Mary, Dr. Campbell, Katie, Macy, Sarah, Fernanda, Nana, Papa Jim, Aubrey….. they were all here. I think Niki, Heidi and Christy came by too, but I cannot remember seeing them. I smiled and remember saying to New York Miss Macy, “No tears, my dear.” She looked like she could have cried a pool of water right there in front of me. I’m so confused. I must be in shock still. I don’t remember much else about today except for sitting in bed, and taking care of Ronan. I remember a few people coming in and out. I remember eating my one thing that I have eaten in a week, my favorite things, chips and salsa and I remember throwing it up. I remember holding Quinn on my lap and watching him cry as I tried to explain to him as little as possible what was going on. He tried so hard to not cry, but I told him how crying was so good for us and how we cannot keep our feelings bottled up. And now I sit here. With Quinn and Woody inside, and Fernanda is here too with her overnight back so I can have a break and maybe sleep while she watches Ronan for me. I don’t really know what is going on. I know I have the most amazing friends surrounding me but somehow I can only find the courage to see a few faces.

I want to go home but nobody seems to think that’s a good idea. I don’t know what to do as the twins and the way they remember everything is the most important to me, but I also want to respect Ronan and take him home to be the only place he wants to be. I don’t know if I want strangers surrounding him if for some crazy reason he has to leave me. I just want him in my safe bed, in my safe house, the place he loves more than anywhere. I want that not only for myself, but for him as well. I’ve been so open and honest about everything and not the least bit private, but now I want to protect him from strangers hovering about. I don’t want those faces around my baby as he takes his last breaths. I feel a jailbreak coming on. And Ronan has his pistols in his hands to bust us out. Not that we would really need them, because I know the people here are so respectful of what you want to do. But a little cowboy action never hurt anyone.

That is all for tonight as I have officially lost my mind due to lack of sleep and oh, just the little fact that my son has cancer and I am just supposed to sit back and watch him die. FUCK YOU WORLD.

But I love you all as always, as long as you don’t say any of those idiotic things I mentioned above to me. Even if you think them, please don’t say them. They don’t give me strength at all. They even piss my husband off and it takes a lot to get him pissed.

G’nite all you cowboys out there. Sweet dreams.

xoxo

My sweet friend, Charisma sent this to me from her friend, Amber. I love it. Bittersweet. I love you, CC. I love you, Amber and I don’t even know you.

Ronan. Here’s a little prayer for Ronan,  beautiful eyes. Seeing the other side. Courage beyond any man.
He will be there. In the trees. In the leaves. It will make her live life, hate life, love life beyond…
Rebirth. Always more chances.
Those eyes. Those eyes. Those eyes.
Fabulous eyes.
We will light a candle at dinner for Ronan tonight and celebrate life.
~Amber

Burn baby, burn

Home. That’s where we are heading. No more hospitals, no more clinics, no more. As I sit here holding Ro on our flight home, all I can think about is, “Will this be his last airplane ride?” It can’t be possible. He was supposed to be coming with us, to Ireland soon. He was supposed to be going to Washington with us this summer. He was supposed to go on my most favorite family vacation to the San Juan Islands on the big boat that Papa Jim will drive. We were waiting until he was 4 to take him on this trip. This is the sickest, cruelest joke in the world. When did life become so hard? That’s the scariest thing; because everything changed overnight. I had no idea how precious life really was until all of this. I’ll say this over and over; I will always wish this was me and not him. I’ve done enough in my life to be fulfilled. He will never get the chance.

So after all of this, I’m sorry to say that if my baby boy goes, there is not a God. God would not do this to a child, a family, to a mother. God can fuck off. I’ve put all my faith out there I only to have it ripped away from me. If “God” takes away my child, I’m going to go burn down a mother fucking church. I’m going to go crazy and I have every right to. The pain that is in my heart will NEVER be healed. For those of you who want to judge me, think less of me for writing these words, or to wonder how I could say such things…. You are not allowed. You have not walked in my shoes, even if you think you have in some sort if way; you have not because you were never a mom to Ronan.

I am about to go home, to the only place Ronan wants to be. I am about to have the toughest conversation in my life with my twin boys. Ronan is their best friend and I am about to tell them the thing that they have feared the most. I’ve stopped eating as I have no appetite. It’s been 4 days now and the thought of food makes me sick to my stomach. I ate some cheese and crackers today only to get Woody off my back. Fuck all if this.

You don’t need to worry about my sanity, as it is gone. But as a mom I know it us my job to put on a very good show as to not traumatize my twins. I would never let them see this insane pain I am feeling. I love them too much. I know I will get through this, but now, sitting on this plane ride I am beyond angry. My emotions change from circumstance to circumstance. The moment I step off this flight, I will put back on my positivity shoes that seem to come off every now and again.

I want Ronan back. I want his hair, I want his healthy body, I want his laugh and bright eyes. I want his naughty trouble making soul that always reminded me of me. He is my little clone on the inside. The two of us never skipped a beat. You know who this is going to be the hardest on? My Quinn. Ronan and Quinn are closer that Quinn is to his twin brother, Liam. How us that even possible? Twins are supposed to have this crazy connection, which my two do; but it is nothing like the connection Ro and Quinn have.

There will come a time after all of this that I am going to go crazy, mark my words. It may take me jumping out if a fucking airplane, visiting some crazy country, running another marathon, but something is going to have to give. I’m not living a life full of limitations anymore and I’m not saying no to things that come my way. I’ve just walked through hell and back and I’m done with all the superficial bullshit that life has to offer. I will spend the rest of my life, helping others, not because it is good for my ego; but because I’m going to make a difference in this world and change the way people’s warped minds think. I will put every ounce into making sure my twins turn out to be just like their Dad; as there us not a better man in the world. I will make sure they know the meaning if living a life by their rules, as long as they don’t hurt others. I will guide them, love them, and we will never forget out Ronan who has forever changed our lives. They will be raised to have an impact in this world in honor of their brother. The most amazing little soul who has ever existed on this planet.

They will be taught to never judge people, as judgment is my least favorite quality in a person. Nobody has the right. They will grow up open-minded, respectful, fearless, honest, and I will support them, guide them, and love them with every bone in my body. I know that I am going to have to work extra hard to fulfill the love that they have missing from Ro. I am more than prepared to take on that task as these 8 months away from them have been horrific. This has been so unfair to them.

We made it home safe and sound. My little busy bees had everything perfect. I told Fernanda and Bethany I needed all new bedding for Ronan in my bed. All white, all calm, all peaceful, all new. He has been so sick in my bed for all this time; he deserves to now be surrounded by nothing but the softest sheets, pillows, blankets, white everything like a fluffy cloud. I asked for Fernanda to make me dinner so I wouldn’t have to worry about it. Done. I begged NY Miss Macy to get on a flight asap to spend the weekend with us. Done. Time is not on our side and nobody knows how much time we have left with Ronan. Anything I have asked of my friends, has been done and more and I will never be able to thank them enough. I hope they know how the only reason I am still standing is because of them. I would be so lost without them. Thank you my angels. You all know who you are.

We were met at the airport by somebody from Hospice whom I chose to ignore. So rude of me I know, but I am so numb and so in denial that I couldn’t do anything else. She came over to our house and I let Woody deal with her. I unpacked some of our things and just pretended like she wasn’t here. Woody asked if I wanted them here for the weekend. I told him no way and to make them leave a.s.a.p. My manners were nowhere in sight today and for that I apologize as I know at some point we are going to need them. But not yesterday, not this weekend. All I want is one normal weekend where I can pretend like this isn’t real. Which is why we didn’t have any talk with Liam and Quinn yet. Just one weekend is all I’m asking for where we can pretend like we are a normal, happy, family. Liam and Quinn deserve as much normal time at home with Ronan without having to know too much.

Auntie Karen and Liz came over to unpack for me. Heidi and Luke came by so Ronan could play with him as he has been begging to see Luke for days now. I sat and watched as the sweetest little 10-year-old boy cry over his worry for Ronan. I just told him I loved him and all that mattered was that Ronan was so happy to be home and so happy to be with Luke and his brothers. My dear, sweet friend, Aubrey (Dr. Maze) came by to give us his support. It was hard for me to look at him tonight as I had so much to say but nothing was appropriate with all the kiddos around. He sat and watched me buzz around, taking care of Ro, getting food for the kiddos, he watched the complete chaos of my life which I so love. I was so happy to have him here. He is a part of our family now. He loves Ro so much. After he left, I put Ronan in my bed and took the hottest bath alive.

Ronan and I fell asleep shortly after my bath. All cuddled up in our cloud of a bed. Thank you again girls. It was the most peaceful night of sleep that I have had in a very long time. We are up early… 5 a.m. Not sure why but Ronan was demanding that we get up. Whatever that boy wants, that boy gets. He’s watching “Mickey Mouse,” while I finish this post. We are going to the twins’ baseball game today and Woody is helping coach. Tricia and Macy are picking up Ronan and myself as I’m not sure if I can drive. Today we are going to be as normal as we can and normal now consists of giving Ronan morphine around the clock to keep him out of pain. My mom gets in today. Don’t know how I’m going to look her in the eyes. I’m so mad at everything and everyone about this. I’m not ready to let him go so soon. I pray that he stays with us as long as possible. I want to see my baby turn 4 on May 12. I want him here for Woody’s birthday on May 24th, for Tricia’s on May 25th, for Mother’s Day, whenever that is. I don’t want to spend this Mother’s Day without him. Please. Somebody listen. I have been on my knees, begging so much that they are bloody.

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

No news is good news, yes??

I find it impossible that I am even still standing after today. Let alone, writing this post. I’m not sure how I’m even awake at this point. I didn’t much sleep last night and we woke up early to get Ronan ready for his day. He was mad that I woke him up from his peaceful slumber and even more mad that he had to drink his contrast before we could head to the hospital for his CT scan. I power talked him though it, although he fought me the entire time. Ronan is such a hard headed little boy and after battling with him almost the entire day, I am mentally beat. There was a lot of distracting, playing, bribing, and threatening today to get him through what we had to do. I have am so glad to be in our bed and over with today and am not looking forward to tomorrow at all. Scan days are always brutal and I know 110% that I would have crumbled today had it not been for Fernanda. She was such a big help.

We arrived to the clinic and were told that Ronan needed platelets again because his were still very low despite the platelets he received yesterday. We had plenty of time before our CT scan was scheduled so we went and got his platelets started. While we were getting them, Ronan fell asleep on the little couch next to me. Fernanda and I sat and watched him sleep and quietly talked. We both tried to block out the sounds of the screaming boy next to us who was about Ronan’s age. The poor thing must have screamed bloody murder for a good half an hour. I felt so helpless and so sad for the child and parents. I told Fernanda sometimes watching the parents go through this is almost harder than watching the kids. It is a lose lose situation for everyone involved and never gets any easier to see.

After Ronan was finished with his platelets, we headed down to get his CT scan done. I must have been told by 5 different people that he needed to be ready for anesthesia, even though I told everyone that he didn’t need it today. We got down to the CT room and sure enough the nurse came up to me and on her piece of paper says the word, Anesthesia, in big red letters. As soon as I saw this I told her that Ronan would not need anesthesia today. She looked at me like I had three heads and said that she wasn’t told this but that we could try it without, first. We went back to the room and I put Ronan on the table as he clutched onto his Star Wars guys. I had prepped him all morning for how he had to hold still and how it was going to be a piece of cake, just like radiation. He understood the drill and was very excited that I was able to stay in the room with him this time, unlike RT where I had to leave him all alone. The whole CT scan took about 10 minutes. He held so still and I acted out a scene from Star Wars for him with his Clone Troopers and told him all about the secret mission they were going on with him. He smiled the entire time and listened with his big eyes looking up at the CT machine. I was so proud of him; once again. He truly amazes me with how brave and strong he is. When we finished, all the techs told them how great of a job he did and he gave them all knuckles as he walked out the door. Such a little Rockstar, my Ronan.

I’m not sure where the rest of the day went. We had to wait around forever to get Ronan’s MIBG injection for tomorrow’s scans. We ran out for a bit and went to Dylan’s Candy Shop which I am totally over at this point. Four trips there, in the past 3 weeks for overpriced candy and you cannot even move in the store due to it being jam packed with people. If I never have to see that place again, I will be so happy. And this coming from me, an avid candy connoisseur, is huge. I’m done with that place. After Dylan’s, Fernanda was about to pass out from being on the “Maya diet,” which consists of not eating, so I took her to 4 carrots to eat. I pretended to eat a half of a sandwich for her, but she busted me and gave me a very stern but loving talking to about my lack of food. Ronan and Fernanda ate which was all that mattered to me. I did take a small Fro Yo to go and ate the whole thing for her. That’s the best I could do today.

I asked a few times if Dr. Kushner would read the results of the CT for me today and I got put off which I kind of expected. Everybody reassured me that if there was something that was not good, he would have come to talk to me. I hope they are not eating their words tomorrow. I’m going with the no news, is good news approach tonight so I can hopefully sleep a little easier.

We got back to the RMH later this afternoon and Fernanda hung out for a while. I practically had to force her out the door and told her to get some rest even though she tried to say she was coming back later this evening. I was not having it as she needs her rest too. My friends, Ed and Diane who are in town with their two little boys came by to see us. We had been looking forward to seeing them all day. They came armed with enough toys for Christmas. Ronan was in heaven not only because of the toys, but even more so because he had two boys to play with. He should have been wiped out from today, but he ran around here and played with those two until 9:45 tonight. It was so good for him and made him so happy. Thank you, Ed and Di. You two and your boys were just what we needed after a long and hard hospital day. I am so blessed to call you my friends.

Alright my dears. This is all I have tonight. I hope you all had a beautiful day full of many blessings. Tomorrow is a huge day for us and I am going to be channeling all of your strength and love. Sweetest dreams to you all.

xoxo