I want to fade into you, Ro

New York Miss Macy takes on Coronado!!! Watch out Navy Seal boys!

Ronan. I’m trying to remain calm and quiet tonight. Today was hard. WTF is going on? I thought things were supposed to be getting easier as time goes on. Time heals all wounds. Who is the dumb ass that made that up? All time is doing is taking me further and further away from you and this time I had with you on this earth. It just makes me miss you more. I don’t even really remember today, except it was another one of those longest days ever. I woke up late with Liam and Quinn. Made them breakfast, talked to you Daddy about some things, cried, all while Quinn sat and wouldn’t leave my side. UGH. You know how much I love your brother, but sometimes, I just need my space whether it be when I’m on a phone call or just trying to freaking go pee. Your brother refuses to leave my side. This breaks my heart, as I know the reason why and I tried to calmly talk to him about privacy today as he grabbed my phone to read a text message out loud that Macy had sent me. Little eyes! I handled the situation appropriately I guess, but I think he got his feelings hurt. After spending the past 3 days with your brothers, I’ll bet you Quinn has been away from me for maybe 10 minutes. I love how much he loves me. It’s as if he is trying to give me a double overload of love because you are gone and he knows I need it and he needs it too. But fuck. I do need my space every once in a while. Thank GOD for NY Miss Macy arriving tomorrow. Not only am I in desperate need of how she makes me laugh like no other, but she can take some of the pressure from this Quinn situation. Mama needs a break and a very long run to get out some of this restlessness.

Today, simply just sucked. Bad day. Bad headache. Bad mood. Bad everything. You know you are going to have a bad day when you wake up to the ocean and sun shinning and you feel pissed off. Liam and Quinn were still tired from yesterday and last night. We attempted to go down to the beach and pool for a while, but they were soon board as none of us were feeling it. Liam was tired, Quinn was tired, and my headache was out of control. We came back upstairs so I could make them lunch. I knew it was going to be one of those lazy bum beach days. Liam plopped himself in front of the T.V. and Quinn said he wanted to take a nap and wanted me to lay down with him. I couldn’t tell him no. We snuggled up in bed together and he grabbed my hand to hold while he fell asleep. I just watched him and tried not to cry. Remember our naps together? Almost everyday we would take one, it was part of our little routine. I loved those napping days together so much. I dozed off with Quinn but my sleep was restless as it always is, especially without my Ambien. I don’t think it would be such a good idea to take that stuff in the middle of the day. I wrestled with my sleep, tried to be peaceful, but woke up angry at everything still. Quinn slept for a few hours. He was beat. I got up and took out my aggression on the laundry, dishes, and cleaning.

After Quinn woke up, we got ready and decided to go out to dinner. We went to Old Town for some Mexican Food. I shared Carnita’s with Quinn and Liam ate a huge thing of chicken nuggets and the homemade tortillas that they make at the restaurant. He of course, dipped them in his ketchup. Your brother and his eating habits…. I swear he could live off of ketchup alone. It was a nice dinner but as always it was a big reminder that you are not here. We used to take you to that restaurant all of the time and it was as if there was a video playing inside my head of the last time we had been there with you. It was all I could focus on as I tried to hold a conversation with Liam and Quinn. I did my best.

It has not even been 2 months since you left me and already I can feel myself panicking about what I am going to do in August when your brothers go back to school. I am now panicking even more because your daddy brought it up today. He knows I will go crazy if I don’t have something to stay focused on. You were my soul focus for 4 years. Now what, Ro? I am scared to death as I don’t have a plan at all. I like a plan so much but a part of me wants to rebel against this “plan,” and just see what comes my way. Fuck the plan of life because I now know there are never any guarantees if you do have one. I had a plan with you. It was the most perfect plan and now look. I’m left alone, in a house, without you to take care of, while your brothers go back to school. I know I will figure something out, I have to. Otherwise, I know I will end up seriously doing something crazy like barricading myself in your room and never coming out.

I talked to my Bryson friend via text messaging tonight. Your spirits are so similar. He loves Star Wars, just like you. He is really passionate about living his life full of fun; just as you were. He has crazy pictures on his FB wall of the skiing he does, jumping off cliffs, etc….. That is so how you would have been. Nothing in life would have stopped you and I know you would have been extra fearless especially when it came to things like skiing, surfing, cliff diving, etc….. It was just something you were born with. Bryson is this way too. The more I learn about him, the more I am finding out how much alike you really are. I don’t know what this means, but I am intrigued. He is a very sweet boy. He told me he thinks we met so he could help me heal. I just told him that is a big job for such a young kid. Way too much for him to take on. He has already helped me by what he did for me on the airplane. Sitting alone without you for the first time…. I very well could have lost it. He distracted me and let me tell him the beautiful story about you. I am so thankful for that. That first flight was going to be hard on me.

I’ll smile tonight thinking about how you used to always say, “Mama.” and I would go, “Yes.” and you would say, “You’re cute.” and I would go, “You’re the cutest!” and then we would start our wrestling tickle party telling each other that the other one was cuter. I loved that so much. It was so fun to be so silly with you. So simple.
Alright my baby. You know our conversation that we had tonight? The one where I stare at the pic of you on your iPad and I swear you are staring back at me. I kiss you and whisper what I need you to do, which is take me with you. I told you to tell whoever it is upstairs, that I need to be up there with you. I am you mom. I am the one who is supposed to be taking care of you! I am fine with leaving here. You make them make it happen for me, Ro. We belong together. Just you and me. Just like we always said. I know you can hear me. Make it happen because I can’t take this much longer. Ambien is kicking in. I miss you so much and although I still had so much to say tonight….I’m tired. I love you so much. I hope you are safe.

xoxo

Where’s Macy??? Where’s Ro????

“I’ve got nothing!”

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

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

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

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

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

xoxo


It sure is, Ro.

I wish cancer got cancer and died

Ronan. Night is setting in. Another day gone without you here. It was as good of a day as I could have possibly made it. It’s just me here with your brothers. No breaks, no running, no time to sit in a corner and cry about missing you. The show must go on. We all slept in. I had a hard time getting to sleep last night, even with my Ambien. My mind was racing with thoughts of you and I felt as though I couldn’t breathe. I felt as if I was going to have a full fledged panic attack right here in my bed. I stayed as calm as I possibly could and talked myself down from the ledge. I actually just started counting in my head. Counting until everything went black and I fell into my dreamless, medicated, state of sleep. I woke up to the sound of your brothers. I got up as soon as I heard them as I knew that this was not a day to hide in my bed because I am the adult here. I am the only one around to take care of them. I went straight into mommy mode. Late breakfast made, dishes and laundry done, had them do some work in their workbooks, packed up our beach bag and headed outside with them. We played football for about an hour in the sand. I broke up the fights and arguing over plays. At one point, Liam told me I cheated at the game. I laughed at this and told him it was impossible to cheat at a game you were playing, when you didn’t know the rules. All this football talk had my head spinning and I was penalized for a play that I had no idea about. I was a good sport, but geez! That brother of yours, Liam, is a competitive little kid. He was so serious about the game. Quinn did his usual laughing at everything and Liam ended up tackling him to the ground and proceeded to throw sand in his face. That was the end of the football game.

Quinn wanted to swim in the pool but Liam did not. I took Quinn up to swim as I watched Liam from the pool, digging in the sand all by himself. It made me sad. He didn’t stay at the beach long and soon came to join us at the pool. I swam and played Marco Polo with them, I let them both get on my shoulders as we splashed around in the water. I got out after a while to warm up. That’s when I saw him. The little boy who looked like a carbon copy of you, except with dark hair. He had your same piercing blue eyes and delicate features. He was in the little pool, that you swam in just 2 years ago and he was about your same age then. I almost threw up as I watched him do the same things you did in that pool. He jumped off the edge, into the water, completely fearless just as you were. He threw a toy my way and I bent down to get it for him as the Nanny apologized in Spanish. The dad sat on the sidelines, working away on his laptop. I started to cry and it took everything I had not to walk up to that dad and ask him to please just open his eyes and to play with his little boy. Not out of judgement, but out of the sheer innocence and beauty of watching his baby boy play so carefree and innocently. It was such a painful gift for me to see today. I swore as if I was staring at you. This was me, 2 years ago, in that pool, playing with you. I sat there and watched the little boy for a good 15 minutes and then decided that I couldn’t take anymore. I gathered up your brothers and we headed upstairs to the condo. I took a shower, told them to get dressed so we could go out to dinner. They didn’t want to go, but I had to get off of this island for a bit.

We ended up at a pizza restaurant and Quinn said he had remembered being there with you last year. He was right. His memory amazes me. I sat with your brothers and we talked about a lot of things. About life, about you, about the importance of things. I asked them what the most important things in life to them are. They both said you. I said yes, they were right. I also told them about the importance of helping others and the importance of always taking care of each other. I told them how lucky they were to have one another. It was a nice dinner with them.

After dinner, I took them to Target to spend their money that they have saved up from their birthday. We decided to get some movies to watch tonight. As we were leaving Target, your brothers were smiling and so full of giggles. They both told me thank you and Liam stood up on his tippy toes to give me a kiss on the lips. I was instantly taken aback by the happiness I saw in his eyes. He has missed me. I have missed him. I tried to let myself get caught up in the moment but I just couldn’t let go of the pain. I’m constantly fighting with the pain that refuses to leave my side, even with the beautiful Target moment that happened tonight.

Once we got back home, we popped in a movie. “Little Fockers.” All 3 of us thought it was funny and you know what a sucker I am for that Robert De Niro guy. I told your brothers all about him and how they could watch one of my favorite movies, “Casino,” when they turned 15. They wanted to know what they couldn’t watch it now. I told them because it wasn’t appropriate for their little eyes or ears. They have plenty of time to learn about the amazingness of Robert De Niro. All in due time, my little one.

All is quiet here except for the screaming inside of my head. Everything I did today took so much energy and effort on my part. Trying to nurture two little boys, when you have absolutely nothing to give, is hard. I mean really hard. I gave it my all today. I gave them everything I had which seemed to be more than enough. I made sure they both had a good day and put myself on hold. I don’t have a choice right now. For this week, while your daddy is gone and I am alone with the boys, I have to put myself on hold. I cannot stay in bed all day, I cannot scream, cry, or break dishes. Thank god that I am a calm person by nature. I never knew how much that would really pay off for me in life. It certainly has now. If I didn’t have my calmness, I would be totally screwed. Speaking of calm and screwed.

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!FUCK YOU,CANCER!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Yeah. I’ve kind of been holding that in all day. I haven’t be able to run in a couple of days so that needed to come out. It almost made me feel better, but not really. I’m still on this Neuroblastoma website that is kind of like a support group for parents. I get emailed with things during the day as the questions go to everyone who is in the group. Sometimes parents are  asking for advice on treatments, hospitals, doctors, sometimes new children are asking to be prayed for, sometimes prayers are asked for kids like you, Ro, when you were close to death. I cannot seem to unsubscribe to this server list and as much as I’ve tried not to…. I may be borderline obsessed with it. When I see a kid on there, same as you, Stage 4, I’ll go over all the details and protocols that they are doing than I’ll usually end up screaming at your daddy, “Why didn’t we do this?” I know this is not healthy, but I’m like a freaking crack addict except my drug of choice is Neuroblastoma. A mom called me from this list and has asked me advice for her son, who I sat across from at Sloan. Her little boy, Jaxon is not doing well. I told her to get contact Dr. Gisele Sholler to get him started on the Nifurtimox trial asap. His disease is progressing rapidly and he is having a hard time walking. Sounds so much like you. She also asked me about the radiation to help his pain. I told her to start that ASAP. We have all learned that time is the last thing on your fucking side with this disease. I also told her about Dr. Mosse at Chop. Because she is a GODDESS and Neuroblastoma should be scared to death of that woman. I have a feeling about her and the way she is going to revolutionize the treatment for this disease. I hope that woman gets everything and more in her life that she has ever wanted. I know you will be watching out for her, Ro. I’ll never forget the look in her eyes when she had to tell us you couldn’t do the treatment because your MIBG activity was too active and because of how full your bone marrow was again. She locked eyes with mine and wouldn’t let go all while having to deliver the most awful news. I’ll never forget anything about that day. The rain that started for a few minutes after she told us. Daddy’s tears. Me, who could do nothing. I couldn’t cry because Daddy was crying and I had to hold it together for him. It was only later, after I left the room to talk to Dr. Mosse about some other questions that I had that I allowed myself to cry a little. FUCK. That quality of life word kept coming up. What the fuck does that even mean?? I had just gotten so used to all the cancer lingo and now this new word was being thrown in my face over and over again. It seemed like a nice little term, all wrapped up in a pretty package, and then you go to unwrap the bow, and “POP!!” That big “quality of life,” word is basically a nice way of saying “You’re FUCKED.” Well, that’s my interpretation of it at least. I’m not here to sugar coat anything, people. I’m not here to tippy toe around the fact that everyone knew we were fucked, but you know you can’t give up on that whole “HOPE,” thing. Even I couldn’t give up on it until that Mother’s Day when I knew your little body was failing you, Ro. It was too late to get you to San Diego. Our time had run out. FUCKFUCKFUCKFUCKFUCK. I am so sorry. You know I would have taken you to Switzerland if I could have. We would have taken you anywhere. But your little body couldn’t take it anymore. I know your soul wanted to fight on, but we had to listen and respect what your body wanted us to do. And it was tired. And you were tired. And it was time for you to just go to sleep; just like I asked.

I don’t remember how I even got started rambling on and on about the above things. I’m waiting for the day that all of you lovelies just up and disappear because 1) You’re going to get tired of hearing me talk about the same things over and over 2) because you just want to go on with your happy lives or 3) because this story is just too sad and dark, or I use too many swear words. If number 3) applies to you, then peace the fuck out. Somebody sent me a super rude email a few days ago. I’m going have to start a file for “The Haters.” It said things like…..” You are embarrassing yourself and your friends aren’t telling you the truth. You need to stop writing and write in a journal, because everyone I know has stopped reading what you are writing. And the people who are reading, are not moms. It is a joke that they are telling you how amazing you are.” I took the time to tell her, obviously she didn’t know any of my true friends, because that was bullshit and to also tell her that I’m glad she stopped reading this as well as her friends because this was not the right blog for them. They need to go seek out a blog about Unicorns, Butterfly’s, and Puppies. Then go blow it out their asses. You don’t like this reality? You don’t like these swear words? You don’t like my truth? The truth that anyone in my situation would be thinking in their heads, but are too scared to put it out there. Ohhhhh…. my bad. I’m so sorry to have offended you with all this reality. A reality, sometimes a death sentence that is handed out every year in the form of 12,500 babies, toddler, kids, teenagers. Yes, Yes, I agree. Let’s choose to ignore this and go back on living inside of our little bubble. I totally get what kind of people you are and I want NOTHING to do with you.

Through all of my pain, sadness, ranting, raving, anger, and swear words, will come something beautiful… I promise. Right now, I am thinking about the Butterfly Life Cycle. I feel as if now, I am in my little egg. In hideout… but plotting a plan. I will soon move into the Catepillar stage…. becoming somebody stronger and new….. I will then go into the Pupa Stage, where I will build my protective shield and completely transform. I will then burst with color while becoming the beautiful butterfly that I know exists inside of me. This beautiful butterfly will revile herself when the time is right and the perfect plan is in place to do some major ass kicking to cancers ass. This beautiful butterfly will still say the word, “FUCK,” when she feels like it though. Deal with it or go away. You have no idea how hard it is to go though what we are going through, even as you read this blog and think you do. If you don’t like what I’m writing, stop being offended and stop reading. Then go volunteer at a hospital in the Oncology Unit for a month and I will be waiting with open arms as you run back and tell me how sorry you are. Or go volunteer and feel nothing. No judgement there at all. But my arms will no longer be open to you. Go home and live your little sheltered life and forget about these beautiful children who have cancer or have died from it. Forget about Ronan. I dare you .

Also, the reason I don’t write in a journal and I choose to share all of this with all of you 1,248million and something people….. I started this as a way to keep everyone updated on Ronan. It started off that way for a while, but then this force kind of came in and took over. This blog pretty much took on a life of its own and being honest and open about everything felt good to me. It was therapeutic and I feel like I have such beautiful story to tell with Ronan; for as ugly as it may be…. just writing out his name for you all to read is beautiful enough to me. I want you to feel my pain, his pain, I want you to be inspired, sad, mad, offended, thankful, scared, educated,….. I want you to live this through me because I know Ronan will make you all better people, better moms, more appreciative, he will teach you the true meaning of life. If, you want his lessons that is. Free will here. Nobody is forcing anything. My ultimate goal is to have you all on our side when we raise awareness for Ronan and Neuroblastoma. Anyway you can help, whatever little thing you can do, even if it just means wearing his bracelet, commenting on my blog, or spreading his story around. That is such a beautiful gift to me. The power of people can be very persuasive. I believe we can make something amazing come from Ronan’s death, make him so proud and celebrate the way we did after we finished “Round 5,” of his chemo. It was just the two of us at home, celebrating. He ran out to the garage to the refrigerator where we keep our Gatorade, sodas, and beers. He came running back in, so excited with 2 cold Coors Lights in his hands. He goes, “Here mama!” “Cheers!” I was so shocked but it was so innocent and cute and he was so excited. I took those 2 Coors Lights in the middle of the day and opened them for us. We both took a couple of sips and then went on with our Star Wars Game. I’ll never forget that day. He seriously was so much older than 3. That boy always loved his beer. So much that Woody would have to hide it from him. Little devil.

I know Ronan. I know you were here for such a short time to teach me some things. Because I have learned so much in such a short amount of time from you. I’m just getting started. I can’t wait to see what journey you have planned out now for me. It is all in your hands. Everything that happens from here on out is due to you. You loved me too much to just walk away, to just leave me behind. We were one. We are one. I’ll follow you into the dark. I’ll follow you to China if that’s where we need to go. I’d much prefer Thailand though….. can you throw me some signs to get me there:) Let’s do this baby boy. Together forever. Your little body was just a shell, it was the most beautiful shell that ever lived on this earth but you know what is even more amazing? The soul that lives outside of that shell. So light, so free, so happy because you get to take care of all of us. You always wanted to be the boss and we pretty much let you. I promise to make you proud, Ronan. I know you would have not been offended by my potty mouth. Words are words. If anything we should turn the world CANCER into a swear word. That is the most offensive word that exists.

OK BABY. This may have turned into a little crazy night for you with all my blabbing about this and that. And no wonder they say you should never operate a car on this Ambien shit! You should not even be allowed to write on a blog on it! Whatever. Power to the Peeps of The Rockstar Ronan Fan Club. Whomever chooses to stick about, they are your truest fans. I’m not going to stop fighting until some drastic improvements come about and someday a cure is found. This is my promise to you RO. For you and all the other kids fighting for their lives. After this summer, it’s time to get our plan in place. Soccer mom by day. Maya’s Mafia by night.

I love you, Ro. My little “not spicy,” monkey blue eyed  brad pitt baby boy who would melt you with one of his infamous winks. Sweet dreams angel. I hope you are safe. You are forever loved.

  • Childhood cancers are the #1 disease killer of children – more than asthma, cystic fibrosis, diabetes, and pediatric AIDS combined.
  • Childhood cancer is not a single disease, but rather many different types that fall into 12 major categories. Common adult cancers are extremely rare in children, yet many cancers are almost exclusively found in children.
  • Childhood Cancers are cancers that primarily affect children, teens, and young adults. When cancer strikes children and young adults it affects them differently than it would an adult.
  • Attempts to detect childhood cancers at an earlier stage, when the disease would react more favorably to treatment, have largely failed. Young patients often have a more advanced stage of cancer when first diagnosed. (Approximately 20% of adults with cancer show evidence the disease has spread, yet almost 80% of children show that the cancer has spread to distant sites at the time of diagnosis).
  • Cancer in childhood occurs regularly, randomly, and spares no ethnic group, socioeconomic class, or geographic region.
  • The cause of most childhood cancers are unknown and at present, cannot be prevented. (Most adult cancers result from lifestyle factors such as smoking, diet, occupation, and other exposure to cancer-causing agents).
  • One in every 330 Americans will develop cancer by the age of 20. On the average, 12,500 children and adolescents in the U.S. are diagnosed with cancer each year.
  • On the average, 1 in every 4 elementary school has a child with cancer. The average high school has two students who are a current or former cancer patient. In the U.S., about 46 children and adolescents are diagnosed with cancer every weekday.
  • While the cancer death rate has dropped more dramatically for children than for any other age group, 2,300 children and teenagers will die each year from cancer.
  • Childhood leukemia (making up the largest group of childhood cancers) was once a certain death sentence, but now can be cured almost 80% of the time.
  • Today, up to 75% of the children with cancer can be cured, yet, some forms of childhood cancers have proven so resistant to treatment that, in spite of research, a cure is illusive.
  • Several childhood cancers continue to have a very poor prognosis, including: brain stem tumors, metastatic sarcomas, relapsed acute lymphoblastic leukemia, and relapsed non-Hodgkin’s lymphoma.

No words are needed for this song, Ro. We both know Eddie Vedder is a god.

A little hummingbird told me……

Ronan. You should have been here today with us. I forced myself to have a better day today. Forced myself up out of bed, out into the delicious San Diego sunshine, out on to the beach; armed with my surfboard. I knew the only way I was going to get though this day today, was by getting my ass kicked in the ocean. That’s precisely what I did. I welcomed the angry ocean with open arms as I tried my best to get up on my board; only to miss the curl of the wave over and over again. To be ripped under the water where the salt water stung my eyes and I choked on the bitter taste of the sea. Happiness. Torture. Hurt. Pain. I felt it today out there and I wish I could say it quenched my thirst for what I am missing in life now. But it didn’t. Not even close. But I knew if I didn’t get out, and try to live….. well, that’s not going to be good for anyone. And as I’ve said before, this is not just about me. As much as I selfishly wish it were sometimes. There are other people involved. Other little people whom I have to take care of.

After I surfed for a while, Quinn came out to join me. I put him on my board and pushed him out past the waves. I carried him out as far as I could go and turned him around to wait for the right wave to come. He missed the first one, and toppled under the water. We tried again and this time, he got up easily and rode the wave all the way into the shore. Liam came out as well just to splash around. We played out in the ocean for a while until your daddy pointed out the dead Sting Ray on the shore. We decided to come in after that. I hope I never meet one of those guys in the ocean. They do not look like somebody I would like to be friends with.  After the beach, we went up to the pool and enjoyed the rest of the summer day.

Your daddy had to head back to AZ tonight for the rest of the week. We went out for dinner and dropped him off at the airport. We headed back to Coronado and decided to walk to the Hotel Del for ice cream. Your brothers seem happy. It’s strange to watch just the two of them interact now and how their relationship is changing. It’s as if they have to get to know each other all over again. You were such a big part of them. It’s almost as if you were such a strong force between them, as you had such a different relationships with both of them. Everything you brought into this world was unique and special and that includes the bond you had with your brothers. We all feel lost and awkward. It’s hard to sit back and watch all of this. It was hard for me to take your brothers for ice cream at The Del tonight. I know you know this. I know you can feel me because at my saddest point tonight, as the sun was setting on our way back from ice cream, I looked up and there was a little hummingbird. Flying right in front of us. Quinn and Liam both started laughing and chased it. It kept fluttering away, but only to turn right back to us again. It landed on a tree right in front of The Shores and it stood still on a branch as we came over to look at it. It stood still for a couple of minutes and Quinn kept insisting that I take a picture of it. I took one on my iphone for him. This little hummingbird didn’t move the entire time we watched it. We finally walked away, and I told the little hummingbird, “Bye Ronan.” Your brothers said, “Bye, Ro,” as well. It was a sweet moment that reminds me as lonely, lost, and scared as I feel without you; that I am never truly alone.

I spent the rest of the night playing with your brothers. I caught up on a couple of phone calls that were way overdue. This whole “hiding,” thing of mine that I like to do, is hard on my friendships. Not hard in the way that I worry about losing my friends; because the one’s that have stuck around are in it for the long haul. Forever. It’s hard in the respect that I just truly miss them and the simpleness that our friendships used to consist of. Nothing is simple anymore. I’m complex and any illusions about life being easy or fair, has been ruined for them. It must be hard to be on the other side of this and to kind of be sitting back on the sidelines; watching. Watching and waiting because you don’t want to overstep your boundaries. I am aware of my little angels surrounding me though. I know they are all still there, and giving me time to grieve. I am so thankful for that. When the time is right, I will see my friends again and all of their beautiful smiles that I miss so much. I am forever and eternally grateful and thankful for the love of my friends. I am a very lucky girl in regards to them.

We finished up our night, just the 3 of us by watching a movie together. Your daddy will not be back here all week. I’ve got to find some things to do to keep everyone entertained and happy. I’ve got to be a mom, to your brothers, like I used to be without the help of anyone else. I haven’t really done this since you were diagnosed almost a year ago. It’s going to be a challenge to say the least. The things that used to come so effortlessly to me, are now the most difficult. Being a mom. Being a wife. Just being Maya. Adios to that Maya. She no longer exists. I don’t know who I am without you. I hope to find my way back someday, but as of now, I am completely lost. At the end of the day, I am just happy that I am one day closer to being reunited with you. I miss you so much.

That’s all tonight my baby doll. I’ve given up on this trying to sleep without the help of my Ambien experiment as well. The pain of having to survive the nights of not sleeping, but instead lying in bed and feeling as if every part of me is burning with pain is not something I am capable of handling. Bring on the Ambien.

I love you. To the moon and back forever and ever. Sweet dreams, my love. I hope you are safe.

xoxo

You and I will always collide

Losing you is like somebody just turned all the lights off

Ronan. I had a bad day. A day where I didn’t get out of bed until 1 or so this afternoon. I am in a funk and I can’t seem to shake it. I cannot shake being in this condo, which as I told you before, is exactly like the one we stayed in when you were so little. Everywhere I turn, I expect you to come running into the room. I think about you 24 hours a day. Today, everywhere we went, I was reminded of you. I hope someday this makes me happy, but as of now, it only brings me to tears. We had a family day out today. Once I was able to get myself out of bed that is. I tried so hard to enjoy life today, but the screaming in my head kept me from doing so. I can put on a good enough show to fool your brothers though. Thank god I’m such an amazing actress.

We took your brothers for pizza and wound up at the movies and saw, “Kung Foo Panda 2,” together. Seeing a movie used to be one of my favorite things to do. Now, it is so hard for me to sit still and focus on a thing and I was so grateful when your daddy asked for a refill for our soda,  so I could be the one to get up and get it. Before all of this, it was always your daddy’s job to refill our pop for us. Just something silly that I would always insist on him doing. Now, I happily was the one to do this for him tonight. I was crawling out of my skin during that movie. At one point, I started to cry. I was sitting between your daddy and Quinn. Quinn was holding my hand and saw the tears. He just took my hand and kissed it. I kissed the top of his head and told him I loved him. The movie was actually really cute. I know you would have loved it. It was all about finding your inner peace to be the best you can be in life. What I wouldn’t give for that. I used to have total inner peace. It is so hard to finally achieve that in life and then to have it ripped away over circumstances that you have no control over. You were the creator of my inner peace. You completed it all. Will I now forever be tortured, destroyed, and half of a person?? Walking around so numb and in so much pain that I am just thankful to make it though another day without you just so I can go to sleep in hopes of seeing you. Because that is what my life is now. I am trying my best to find the joy in the beautiful things that surround me, but the world seems so ugly without you. It’s as if the blue sky has disappeared, the birds have stopped singing, and the sun has stopped shining. I am thinking I am becoming severely depressed as I’m so tired of this life without you.

We are not going to Washington this summer to see Nana and Papa. It’s the first time that I haven’t been home during the summer in 18 years. Washington summers, especially after I had you boys, has always been one of my favorite places in the world. And to think last year, when we were there, your little body was so invaded with cancer. And we had no idea. We had the BEST time, just soaking up nature and enjoying the simplicity that comes with being there. It has always been such a peaceful place for me but this year, the thought of going there is much too painful for me to process. I’m so sad about missing the time with your Nana and Papa Jim as having you boys there for the summer makes their entire year. I feel like I’ve let your brothers down as they have been asking to go. I told them maybe for Fall Break. I tried to explain why I can’t take them there, but I don’t think they truly understand. I suppose anywhere we go, is going to be painful. But for some reason the thought of going to Washington without you is something I am not ready for. To be in my old bedroom, from when I was a teenager, where we spent every year, for the past 3 years together, snuggled up in my old bed…… I just can’t do it as of now. I don’t have the strength and that whole inner peace thing that I am now lacking would eat me alive if I were there. I’m sad about it and you know how much I am going to miss the time with Nana and Papa Jim. It is the first summer of missing so many things. Most of all, you.

So, I started reading this book called, “Growing up in Heaven.” I’m about 60 pages into it and I am really trying to keep an open mind about it as well as the author, as he claims to be a Medium whom can bring to light the journey of children who have passed from earth to heaven. You know I am all for that Medium stuff and I was hoping this book would give me some peace of mind. The first chapter or so, I was really getting into it. I then made the mistake of Googling this James Van Praagh guy as I was convinced that I needed to seek him out, asap, so he could help me get to you. Bad idea. As soon as I got to this guys website, I was instantly turned off. There was NOTHING authentic about it. It’s all glitz and glamour…. and it felt fake and phony. But guess what? For the small price of 4 grand, I can take a cruise with this dude and he will do a reading for me! I think I said it best when I sent a text today and it said how I was reading this book and how I was about to call BULLSHIT on James Van Praagh and his exceptional gift for communicating with the dead. So, I’m guilty. I’m totally judging a book by it’s cover. I’m a skeptic. Not because I don’t believe in things like this, because I truly do think that there are many people who are blessed with extra spiritual gifts in this world. But this man is talking about how the child’s spirit just comes to him and he is able to see them plain as day. I wish I could say thank you to this man because according to him, you are up in heaven, where everything is white and colorful, riding a fucking Shetland pony, all while getting an education AND helping others. If he would have left shit like that out, I may have bought what this guy is selling. Some of what he says, seems to be spot on with what I believe in about a person’s soul…. but the other stuff just seems like smoke and mirrors to me. He sure does have the part down about the grieving parent role though. Although, it is not rocket science. No shit that I feel like I have lost my identity, that I am in a robotic state, that I am numb. And no shit that physical fitness is a wonderful way to deal with stages of grief because I HAD NO IDEA that exercise releases endorphins into the bloodstream! This guy  is a genius!!! Oh Ro….. I have no idea where this feistiness from me has come from tonight…. you must be hanging around, channeling it into me. I loved it when I would call you feisty and you would scream back to me, “I NOT SPICY!” Still makes me laugh on the inside all of the time. I miss your little voice and how you would call me, “Mama.” Never mommy or Mom. Always mama. I miss it so much.

Anyway, back to the book baby. I’m being awful about it. But I’m going to finish it and I hope that I do end up believing in this guy because I would love nothing more, besides the obvious like you coming back, than to think that you are up in heaven, playing with your pony, helping others, and that you are so happy and free. I would love for that to be the truth because if you cannot be here with me, that is exactly where I would want you to be. Except the pony thing is a little weird. I’d rather have you playing with Master Yoda and Captain Rex instead.

I’m tired tonight my sweet boy. I’m going to take my Ambien and go to sleep with your brother, Quinn, who is right next to me. I love you so much. To the moon and back, forever and ever. Just you and me. Sweet dreams my monkey. I hope you are safe. You are forever loved.

xoxo

I want a rewind button

  • Instagram is my BFF

    Ted. #ronan #fucancer #fridaynights #teddygrahmthompson #bestdogever #myboyfriend #goldendoodle What do you do on a Thursday night when you are about to have a nervous breakdown? Go to the grocery store and eat your way through the aisles while talking to yourself, out loud the entire time. Some shady shit goes on in a grocery store at night. SHADY SHIT. #ronan #fucancer #stopmakingoutintgeaislesplease #justsaynotodrugs #ilookshabbychichomeless #cleanuponaisle5 Puppy dog genius. #ronan #teddygrahmthompson #ignoremycreepypuppytalkingvoice #myboyfriend #bestdogever
Follow

Get every new post delivered to your Inbox.

Join 24,077 other followers

%d bloggers like this: