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.

The Saddest Hour

Ronan. The night is finally creeping in. Another day done without you here. The days still drag on and on without you, no matter how busy I keep myself. We all woke up this morning and I walked into town. Your brother, Liam, has swimmers ear so I had to pick up his prescription. When I returned back to the condo, your brothers were all ready to hit up the beach. We packed up our things and headed down to the beach. We took a big bag of your little Star Wars guys with us and decided that we would build them a fort for you. Liam was in charge of the “bad guys,” area and Quinn and I were in charge of the “good guys.” It was so hard for me to keep it together for your brothers while we did this today. You would have loved it so much. I took pictures for you so you could see how it turned out. We had fun doing this together in your honor today. Or as much fun as we could without you being here with us.

After the beach, we headed to the pool. It was really nice out today so we played in the pool and the hot tub for a couple of hours. Your brothers are missing you so much. They get so board with each other and without having you around to play with. My entertainment pales in comparison to the way you would have entertained them for hours. I did my best, but they were soon ready to come back up and they were tired from the sun. The rest of our day slowly went by and Mimi and Papa called to see if they could take your brothers to the movies. They both wanted to go and this was a good chance for me to have some quality time with your Daddy. Your brothers left with Mimi and Papa and your Daddy and I went out for our date. We sat at a little restaurant in Coronado for their Happy Hour. So much for that. Happy Hour should have been called  the Saddest Hour because that’s what it turned into. I sat with your Daddy, and pretty much cried the entire dinner. We talked about you the whole time, went over again and again, what we could have done differently. I told your Daddy how much I worry about you and I can’t stop thinking about where you are. The whole time I kept thinking in my head, how I was your mommy and I couldn’t save you. I was supposed to protect you and I will always feel like I failed you. I was supposed to keep you safe, baby. But there was nothing I could do and I’ll never understand how that wasn’t enough. How our love for each other wasn’t enough. Wasn’t anybody listening? Couldn’t they see how much we loved each other and deserved to be together for the rest of our lives? Who would be so cruel to take that away? The love we had for each other was so powerful I was sure it was going to save you. The love you had for me was the same….. something beyond this earth even, Ro. Where are you?!?!?!?! Why did you have to go?!?!?!?!? I will never stop questioning everything, Ro. I will beg for you to come back for the rest of my fucking life.

I didn’t eat much at dinner, but instead I sat and watched how sad your Daddy is too. At one point, the waitress came up to us while my tears were pouring. She quickly walked away. I wondered what she thought I was crying about. I am pretty sure she thought something like a failed marriage, an affair, one of us losing a job. I’ll bet you in a million years she would have never guessed my tears were for you. My tears were because our beautiful boy just died of cancer. Our reality is just too awful to be reality. I still can’t believe all of this and I swear I am still waiting to wake up from this nightmare.

After dinner, we came back to our place but it was so nice out we decided to go on a walk. We walked to The Hotel Del and then down to the beach. We climbed up on some rocks together and looked at all the crabs crawling about. Your Daddy was looking out to the ocean and all of a sudden, a fin appeared. The next thing we knew we were watching a bunch of dolphins jump about. One of your little signs, baby?? I’ll take it, but it still doesn’t make me miss you any less. I grabbed your Daddy from behind and wrapped my arms around him as we stood for a long time together and watched them play about. It was peaceful and I wished so badly that we could just be that normal, happy, couple that we used to be. Back when you were here and we had nothing to be sad about. Now, we will be branded for life as the couple who lost a child. Sadness will always be a part of our togetherness. All innocence we once had will never be again and therefore, we as a couple will never be the same. Will we come out of this stronger? I don’t think we have a choice. We have to as we have too much to lose if we do not. But the sadness that now exists in our world hurts so much, Ro. Nights like tonight though are important to the both of us. Grieving about you, together is something I haven’t been ready to do yet but I can slowly feel myself coming around. I can’t do this all alone and I feel like I can heal better by letting my guard down a bit. As much as I want this wall up, keeping everyone out…. that isn’t going to do anyone any good and I really need to stop just thinking of myself as there are other people hurting just as badly as I am. Your Daddy being one of them. The bottom line is, he needs me and I need him. I need to be better about remembering that as it is very easy to get wrapped up in my own little world where nobody else exists except me and my pain for you. Sometimes I prefer it that way, but this is not healthy. I will try harder for you, baby. For our family.

After our date, we came back to our condo and I slipped out for my run. UGH. I was so not feeling it tonight but I pushed through my 6 miles at a sluggish pace of a 9 minute mile. What the heck is that?? I’ve been pretty consistent with my 8:23 minute mile. Tonight was brutal. At one point, I wanted to stop and walk but I heard you in my head so I refused to stop. Thanks for that extra push tonight when I needed it most. The rest of the evening was spent playing with your brothers and Daddy. We played PS3 together… something I don’t do very often but it ended up being pretty fun. We played Call of Duty: Black Ops. I was on a team with Quinn and we beat your Dad and Liam. There was a lot of laughing and I think your brothers were surprised at my mad shooting skills. Never underestimate the power of your mama… video games and all.

This is all for tonight my love. Until we meet again, hopefully in my dreams tonight. I love you, Ronan. Forever and Ever. Just you and me, baby. I hope you are safe.

xoxo

Fucking First Father’s Day without you

Ronan. First Father’s Day without you done and over with. We survived. Somehow, I pushed on and got through the day. We slept in a bit, got up and all decided to get ready and head out to our new favorite breakfast place called Urban Solace. I gave your Daddy his Father’s Day card and gift. The hardest part was writing out his card after Liam and Quinn had signed it and I wrote my little I love you to him. I signed it from the both of us and bawled while I wrote your name after mine. I gave your Daddy his gift and card and we took some time to just hug each other and cry. There were a lot of tears this morning which was good, because I needed to get them out before I could go on with the rest of the day.

Kasey and Laura packed up all of their stuff so they could leave after breakfast and off we went. This place we have discovered in an area called North Park in San Diego is breakfast heaven. They do a thing called a “Blunch,” which is their version of breakfast and lunch. OMG. The food is heaven and even I, who can’t muster up much of an appetite, still managed to eat a pretty good breakfast this morning. The food is too good to pass up. It’s the place where I talked of before where they have sugar cubes on the table and I could picture you throwing them across the table at your brothers. You were missed today, my darling. Father’s Day was so incomplete without you. We managed to enjoy our breakfast and soaked up our final hour with the Lunds before they headed back to Palm Desert. We were sad to part ways and made a promise to not wait so long to see each other again. I miss them already and I told Laura the place here was much too quiet without them. The quietness that I hate now. I remember how I used to crave it in my previous life. Now the quiet that surrounds us is just pure torture.

After our “blunch,” we came back to our condo and I took a little nap with Quinny. After we woke up, we hung around here for a bit and then walked over to Mimi and Papa’s for dinner. We sat around with them for about an hour and then your Daddy decided he wanted Frozen Yogurt. I was itching to get my run in and Liam just wanted to stay with Mimi and Papa. Your Daddy and Quinn walked into town to get their yogurt fix and I headed out for my run. It was a fast 6 miles tonight. It’s my only little piece of heaven now. Running seems to be the only way I can get out all of my feelings, anger, sadness, and emotions. I think about you and make you push me to run faster and harder. It feels good to me which is saying a lot because as of now, nothing really feels good. Out of all of this I’m learning how important physical activity is to me. It has always been a big part of my life, but now it’s a little out of control. I had a time in my life where it was an obsession of mine and I can feel it starting to come back again. On the days that I don’t run or surf, I sit and obsess about it. It seems to be my only release. As I’ve said before, it’s such a different kind of pain that I feel all day everyday now. The pain of being physical and pushing myself is a vacation from the kind of pain that now controls my life.

After my run, I went and picked up Liam from Mimi and Papa’s. I said that we should go for a late night swim and hot tub. We grabbed your Daddy and Quinn and headed to the pool. It was some nice family time and a good way to end the night. You would have loved it. I missed you so much. I thought about how crazy you would have been down there with us and how I would have had to bundle you up after we were done and carry you up to our place, put on your cozy pajamas and then, I would have cuddled up to you in bed and watched you fall asleep. For something so simple, the thought of doing this with you sounds like the best thing in the world. I love you so much, Ronan. I’m going to end this with you tonight before I get too sad. I still worry about you like you were living among us. I worry about you as much as I worry about Liam and Quinn. I will worry about you for the rest of my life. G’nite my little man. Another Fucking First down. I think this is it for a while. Although, 4th of July is coming up. UGH. Forgot about that one. FUCKING FUCK FUCK FUCK. Fourth of July without you. This is getting ridiculous. I may have to be fully sedated for that day. Thank God I’ll have your Nana and New York Miss Macy here to help me though it. I love you to the moon and back, baby.

Dearest Daddy Woo, this is for you.

I’m sorry for your first Father’s Day without Ronan. I’m sorry that he is gone. I’m sorry that you hurt. But I am thankful too. Thankful for your strength, thankful for your heart, your undying love for us, thankful that you are such an amazing man that you are able to hold us all together. You are the most amazing man, attorney, father, husband, and the love of my life. I truly think you are the most amazing man that was put on this earth and everyday,  feel so lucky to wake  up beside you and so proud and honored to be your wife. Thank you for being the truest man alive, for being my equal in life, for loving me at my worst. Ronan was so lucky to have you as his Daddy and he loves you so much. I promise, someday, there will be less tears and more happiness. You deserve all the happiness in the world. You are such a good man; the last man that deserved to go through something like this. I am so proud of you, so thankful that at 21, I knew it was you I was meant to spend the rest of my life with. I’ve never doubted that and I never will. I love you, Woo. Thank you for being my everything and refusing to let me go even when I push and push and push. You are the best thing that has ever happened to me in my life, as well as our beautiful boys. I love you.

Ending this tonight with something one of my new friends sent me all the way from the UK. Thanks Michelle.

xoxo

I lost my child today,
People came to weep
And cry as I just sat
And stared, dry eyed.
They struggled to find
Words to say to try
And make the pain
Go away. I walked the
Floor in disbelief.
I lost my child today.
I lost my child last month.
Most of the people went
Away. Some still call and
Some still stay. I wait to
Wake up from this dream.
This can’t be real, —
I want to scream.
Yet Everything is locked
Inside, god, help me
I want to cry.
I lost my child last month.
I lost my child last year
Now people who had came,
Have gone. I sit and
Struggle all day long, to
Bear the pain so deep inside.
And now my friends just
Question, why? Why does
This mother not move on?
Just sits and sings the same
Old song. Good heavens,
It has been so long,
I lost my child last year.
Time has not moved on
For me. The numbness, it has
Disappeared, my eyes have
Now cried many tears.
I see the look upon your face,
“She must move on and leave
This place”. Yet i am trapped.
Right here in time, the songs,
The same, as is the rhyme,
I lost my child…..today.

This about sums it up. Whoever wrote this put this in to words, perfectly.

G’nite to all the lucky Father’s out there today. I hope you had a wonderful day basking in the glow of your beautiful children. Sweet dreams all.

I miss you. But I smiled though my tears for you.

 

 

Ronan. Hi baby. Missed you today. I woke up your brothers early. Well, early for us since we have been lazy beach bums sleeping in on most days. 8 a.m. was early for us today. I was tempted to let them sleep in as they looked so cozy and sleepy. They had to be at surf camp at 9 a.m. though, so waking them up was necessary. They so did not want to go. The both of them have been complaining that I signed them up for surf camp since I told them about it a month ago. Too bad, so sad, is what I basically told them. They kept insisting that they were not going to like it. I told them they wouldn’t know until they tried. It’s all week from 9-12. I got their cozy little buns out of bed, dressed and fed, and we headed down to the very cold beach this morning. They put on their little wetsuits and before I knew it they were off and running into the water. Most parents just dropped their kids off. I stayed and watched, took pictures, helped them and even got my sweats soaking wet as I was helping a little girl named Brooke, get out into the ocean. She was sooooo cute that I couldn’t resist. It was the best 3 hours I’ve had in a very long time. I was surprised how much I enjoyed just sitting and watching them and I was so impressed at how easily they picked up on it. Especially Liam. He really took to it and was really far out in the ocean with the instructor. He surfed up until the 3 hours were up. I am so proud of both of your brothers. They ended up loving it and can’t wait to go back tomorrow. I saw you while I was watching them. Those two little dolphins I saw the other day were out really close to Liam. I told Quinn it was you watching over Liam, to make sure he was safe in the ocean. He smiled and agreed with me. Thanks for that today, baby.

After the surf lesson was over, the boys were freezing so I took them over to the hot tub to warm up. Your daddy came down and brought down lunch to BBQ. We spent the next couple hours at the pool and the hot tub. After that, we headed back up to the condo. The boys were wiped out, but Quinn really wanted to rent one of those Surrey bikes that are in front of the Del. He has begged for weeks. Liam had no interest in going, and Woody had to work, so I headed off with Quinn to rent our bike. We rode all over the Island and ended up the school here. Quinn got a big kick out of my crazy driving and jumping the curb with our bike at the school. He was cracking up and I explained to him the importance of doing “boy,” things like that. I told him if you had been there, you would have made us do it over and over. In your honor, we took our Surry bike and jumped the curb 4 more times. We laughed the every time. It made me miss you so much, but it felt good to laugh with Quinn. I could tell the day meant a lot to him and it meant a lot to me as well. When we finished with our bike, we walked over to the Hotel Del to get him some ice cream. After our big day out, Quinn came back here and 20 minutes later, he was passed out cold. He slept for a few hours and woke up starving so I took him to get dinner. Liam, once again did not want to go. He is such a little homebody.

I have not had a day like today in a very long time. One where I almost enjoyed myself. Spending time with your brothers, watching them do something new, is the closest I’ve come to almost feeling happy since you left us. Happy, but I missed you a lot too. I know those two things will go hand and hand for the rest of my life now. I’ll always picture  you with us, in everything we do. I know today, you would have been out on that beach with me, with your boogie board, watching your brothers and mad that you couldn’t be out surfing with them. You were always trying to keep up with them and I was always amazed at how well you did. Your fire and zest for life was something I have never seen in anyone in my life. You took everyday by storm and that is something that I miss doing with you. Together, we were unstoppable. I miss having you everywhere with me so much. If you can’t tell, I have a  new little shadow now and his name is Quinn. He is stuck to me like glue and I am really trying to embrace him as much as possible. I can feel myself reconnecting to your brothers again, but Quinn is working extra hard to be by my side 24/7. Liam is so independent, that he is happy anywhere and has been spending a lot of time with your daddy. They are such similar creatures. I love watching the two of them together.

That is all for tonight my little monkey. I’ve got to try to get some sleep as we have another early day of surf camp tomorrow. I miss you more than words could ever say. I love you to the moon and back, baby. I hope you are safe. I still worry about you so much. I would give anything to be able to kiss those sweet little lips of your.  Sweet dreams, Ro.

Is an o.k. day going to be as good as it gets?

 

 

Ronan. It was an o.k. day without you. I had to work for it though. I had to work hard to make it that way and as much as I didn’t want to, I did. I spent the day with your brothers and our cousins. We went to breakfast this morning and then the 4 boys ran off to the Rec Center to play basketball. As we were walking back to get the boys changed, I looked back to make sure we had everyone with us. I almost said out loud, “Where is Ronan?” But I caught myself before those words came out of  my mouth. I so expected to see you running behind all of us. I sat out at the pool with Stacy and her little troops while the boys played basketball. It was weird sitting there in the sun and not having anyone to worry about or take care of. Gosh, a year ago…. this would have been paradise to me. Laying in the sun, headphones on, a book to read, and time to just be peaceful with myself. Today, I hated every second of it. I wanted nothing more but to be worrying about you in the water, to be watching you running around, and splashing about. I would have been so happy to have had the privilege to wrap you up in your little towel after you had gotten out of the cold water. To have held you close to warm you up and then I would have taken you up to our room for your lunch and nap time. We would have napped together like we always used to do. Instead, I watched my dear friend, Stacy, do all these things with her 3-year-old, Kennedy. She is such a little firecracker and reminds me so much of you. She had a total meltdown at the pool which I of course thought was adorable. It was a combination of being hungry, tired and a newly 3 year old. She came and laid down on the lawn chair next to me and put her little head down. I went over to her and rubbed her back for a long time and she calmed down and let me do this to her for about 20 minutes. She then popped up and was fine. It was so sweet but it still hurt. I wanted it to be you that I was comforting, but the fact that Kennedy is slowly letting me into her little world feels good to me. We spent the rest of the day at the pool and I then took your brothers, Jake and Carter over to the grocery store to cash in the recycling bottles that they have saved up. They get 5 cents a bottle and were so excited about it. We took a garbage bag full of bottles over to Vons and I think they ended up getting about 3 dollars out of it. It was important to them and I think a very good life lesson to learn about taking care of our environment and responsibility. They were so excited and happy to spend their money at the vending machines at our condo. All of us adults have been laughing over the 4 boys and their obsession with the vending machine here. It’s as if they have never seen one in their life. They live for meeting up there and spending their change. Such little things but so important to boys who are growing up way too fast. Watching how independent Liam and Quinn are becoming is hard for me. The fact that they are starting to not need me so much anymore because they are big enough to go down to the vending machine alone feels strange. I’m so not used to having things this way. I feel like in the blink of an eye, they have become little men. In more ways than one and unfortunately a lot of that comes from losing you. It’s not fair and it’s not right. I don’t want them to ever feel like they have been robbed of their childhood which is why I am trying to encourage them to be boys and  to learn, explore, make mistakes, but also learn right from wrong. They both have such good heads on their shoulders but when they do things like take a stick and put it up a vending machine to get candy out, and then run to tell me about it, I’m not going to get mad. I want them to be boys in every way possible. Just as long as they also learn there are consequences, but honesty will also go a long way in this family. This is all stuff you should be learning too, Ronan. Your brothers would have been the best teachers to you. I’m sorry everyday of my life for them and for you. I will love them so much more because of your absence. Even though it feels like I have a connection to nothing or anyone, I know it will slowly come back with them. It is days like today that give me that hope.

We had Stacy and her kids over for dinner. Afterwords, we drove over to Pinkberry for Frozen yogurt. I had an unexpected feeling of happiness wash over me when I went to cross the street with Stacy’s little girl, Kennedy, and she grabbed on to my hand and we ran across the street together, with our hands intertwined. It reminded me of you. I sat and watched her devour her frozen yogurt and thought about how much the two of you would have loved each other. I had a flash of seeing you two together and the mischief you would have caused. I ached for it so badly. She loves Liam and Quinn and I know she would have been crazy about you. You two would have been two peas in a pod. After our frozen yogurt, Stacy dropped us off and Liam and Quinn were pretty tired. They fell asleep fairly quickly, almost before I could even tuck them in and we said our good nights to you. They are both so tired from their day of swimming, basketball, and playing in the sun. They miss their cousins who left to go back to Phoenix today already. The good news is, there is a new set of cousins who arrived today so I have no doubt they will be just as entertained.

I ended my night with a phone call from my friend, Doriet. I know you remember her little girl, Esther, who passed away just six days before you. We had a good talk tonight and both seem to be in a similar place; struggling a lot but we both know we have to go on. She had the same kind of connection with her little girl that I had with you. One so strong and deep that you cannot even explain it. You two were such similar souls and I feel that way about her mom and I. We loved the two of you so deeply that is was almost not human. This is one of the reasons I know that we have such a special connection. I think about Doriet everyday and Esther too. I hope you two have found each other and are playing away. Doriet says Esther leaves her signs everywhere. She knows Esther is still with her much like the same way I know you are still with me. I want to go back out to New York maybe in the fall to spend some time with her. I want to go back out to take a picture of you to Dr. Kushner and make him look me in the eyes. I want him to acknowledge the way he handled us was not right in the end. I’m going to lose it if I don’t get to close that chapter in your journey. I really wanted to run in the Marathon for Fred’s Team in NYC next year, but I am so pissed that I don’t even know if I can support his cause. How can I support a man who could so easily just brush you off. I don’t care if people tell me to just let this go because I’m not going to. Parents who have just been told the news that I had to be told, deserve more than that. I don’t care if this doesn’t change him or the way he does things, but he is still going to hear me. I need to know that a fraction of him cared and is human, otherwise I am going to forever think we made a mistake in letting him treat you. Maybe he wasn’t worthy of caring for you, maybe it should have been Dr. Mosse all along at Chop. Fuck me. I told Fernanda the second I met Dr. Mosse that it was her,  that she was going to be the one to save you. It was my gut feeling. But then we decided to go with Dr. Kushner because he said he would do whatever it took to save you. He convinced us. Well, he didn’t. He threw us away like an old rag and this will never sit well with me. I’m pretty sure, no matter what road we chose, your outcome would have been the same. At least that is what I tell myself to get though the day. At the end of the day, your dad and I had to pretty much navigate your treatment ourselves and we did the best we could. It should not be this way. We are not fucking doctors. The fact is, there is no cure when there should be. It’s a matter of luck and you got the short end of the stick my baby. I’m sorry a million times over. I’m sorry for you and my heart breaks daily for Doriet. I love her and I know how badly she is hurting because I am right there with her. It’s not fair and it’s not right. When the time is right, I will go and be with her and we can grieve together because that is one of the bonds we have and it is too strong to let it go. It needs to be done for the two of you and for the both of us.

I love you, Ronan. I’m tired tonight and I miss you so much. I will sleep with you in my heart as I do every night as I cuddle up to your blanket. Thank you for helping me to have an o.k. day today. I really needed it. G’nite my sweet, beautiful boy.

xoxo

 

The ocean didn’t swallow me whole

 

 

 

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

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

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

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

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

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

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

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

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

xoxo

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

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

Happy Easter Ro baby

Oh Ro baby. Happy Easter. I’m not going to lie. It was a hard day today. At one point, I did not think I was going to be able to get out of bed. I wanted to spend the day hiding under my covers. It took me a few hours once I woke up, to get things started for the day. I was barely functioning. We planned on going over to Woody’s Uncle Larry’s house where all the cousins were going to be. In my head, I kept thinking, how am I going to face everyone? I’m way too sad. But I knew how much my twins were looking forward to it and I knew it would be good to be surrounded by our loving family. Woody and I got the boys ready and dressed and then got ready ourselves. Out the door we went and I turned my frown upside down; as best I could.

The day was spent watching the boys playing, laughing, running, swimming, and enjoying their cousins. Ronan even got a little wet and ran around as much as he could but stayed by my side most of the time. It was good to be with family on such a special day. There was a sadness in the air, but it was overcome by the beauty and strength of Ronan. I refused to let cancer ruin our beautiful day. Ronan was happy, smiling, and laughing while throwing water balloons at his cousins. Today, cancer did not win. Today, we held our heads high and enjoyed his little life to the fullest.

Ronan was ready to go after a couple of hours so Woody and I took him home while the twins stayed behind to play the rest of the day away. We came home and Woody ran out to do some things which left me here alone with Ronan for what I thought was going to be some quiet time. No quiet time allowed as I was told by him. He was all ready for a Star Wars battle so that is what we did. Fernanda stopped by to drop off some of her amazing confetti filled easter eggs which Ronan smashed over my head. She had her Brando with her and I wanted to just eat him up. Cutest thing ever. He was dressed in a tee-shirt, his skinny jeans, and cowboy boots. She has the most beautiful children and I was so happy they stopped by for a few minutes.

After Fernanda stopped by, I had texted Gay  earlier to tell her Ronan was really wanting to see Cal. She then came by about an hour later with her boys, Cal and Chet. Ronan was over the moon. They played and Gay helped me get a lot of the little things around the house put away. I am so thankful for my wonderful friends and the way they are handling all of this. They all refuse to give up and are more than rising to the occasion. I will never stop being blown away by all of their support and love. We are so blessed to be going through all of this with the most amazing people by our side.

I am finding laughter in the stupidest things these past few days. Not much is making me laugh anymore and laughing is one of my favorite things in the world. Woody has put on our “South Park,” DVDs. So stupid, vulgar, and immature…. but I have been dying laughing at them. Trey Parker and Matt Stone = Freaking geniuses. I am such a sucker for some dirty, foul-mouthed humor. Works every time. Even in my numb, fogged induced state of mind.

Tonight, we did normal family things. I got to tuck my Liam and Quinn in to bed which is such a precious gift to me now. I spent today washing all of their sheets and duvet covers. Felt so good to do something normal. I love laundry and I could never get tired of doing it. It is my favorite normal chore in the world.

I thought about a lot of you today, even the people I don’t know. I imagined your faces that I have made up in my head and wondered what you were doing on this day. I imagined a lot of your kids dressed up in their Easter best, a lot of you at church, and all of you watching your kids with your love for them pouring out of your hearts because you know how blessed you are to have them and I know how even more thankful you are for their health. Thinking of you all made me happy and warmed my heart. I hope I get to meet you all someday. I would like to give you a smile and a hug and thank you for supporting our family, whom you don’t even know. I am so thankful for all of you as well.

Tonight, after all of my babies are asleep I am going to go and kiss my husband and thank him for being the best man in the world and tell him how proud I am to be his wife. He deserves to hear this everyday. He is simply the most amazing man living on this planet. I will always think I am the luckiest girl alive that the stars aligned and we met when we did. I’ll never forget our first date and how I just knew he was the one. 11 years later and here we stand, going through the hardest thing of our lives, but we are going through it together, not apart. As much as I would like to put up my walls and as much as I try, Woody always finds a way to knock them down and I let him back in. He is the best thing that has ever been mine, that Wooddawg of mine. Mine forever. No matter what we have to go through. We will never let go of each other.

Sweet dreams to you all. I hope you had a beautiful day with your beautiful friends and family. I love you all so very much.

xoxo

This is from my sissy, Liz, tonight. I love you so much, Liz. This is just what I needed to hear.

Easter represents rebirth and new beginnings..how appropriate. Love you and your family with all my heart. And remember, we don’t call Ronan a rockstar for nothing!! 🙂 xoxoxoxxoxoxoxoxoxoxoxoxoxoxoxoxoxxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxxoxoxooxoxoxoxoxo

Dear Dr. Kushner-

You want me to give up on this? You gave up so easily but I will never. Did you forget the most important factor in your decision making? Him. He is not like other little boys. He is our miracle, our Rockstar, our gift. This is not over and it breaks my heart that you stopped believing. Miracles do happen; everyday.

Fondly,

Maya Thompson