It’s a FUCK YOU Cancer kind of day

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Hi. I read somewhere that the government only gives 150k a year to Neuroblastoma research. Ummmm…. how can I find out if this truly is true. You know what they say, you can’t believe everything you read on the internet. Can any of you help me out with this? I seriously need a little research assistant to help me compile these facts.


If this is true, I am going to go ape shit. Here are some facts below that I know are indeed true. We need to use these as ammunition to help against this fight. 

  • Childhood cancer is the number one disease killer in children.
  • Neuroblastoma is the most common cancer in infancy.
  • Neuroblastoma is the most common extra cranial solid tumor cancer in children.
  • Every 16 hours a child with neuroblastoma dies.
  • There is no known cure for neuroblastoma.
  • Nearly 70% of those children first diagnosed, have disease that has already metastasized or spread to other parts of the body. When disease has spread at diagnosis and a child is over the age of 2 there is less than a 30% chance of survival.
  • Childhood cancer is the leading cause of death by disease in the US and it kills more children per year than cystic fibrosis, muscular dystrophy, asthma and AIDS combined.
  • There are 15 children diagnosed with cancer for every one child diagnosed with pediatric AIDS. Yet, the U.S. invests approximately $595,000 for research per victim of pediatric AIDS and only $20,000 for each victim of childhood cancer.
  • The National Cancer Institute’s (NCI) federal budget was $4.6 billion. Of that, breast cancer received 12%, prostate cancer received 7%, and all 12 major groups of pediatric cancers combined received less than 3%.
  • 5%-7% of all childhood malignancies
  • about 1 in 6000 children will be diagnosed with neuroblastoma by the age of five
  • The average age at diagnosis is two
  • About 25% of newly diagnosed neuroblastomas are found in children under the age of one

 

I’m on a mission today. I am pissed today. Teddy’s funeral should not have happened. Ronan’s funeral should not have happened along with countless of others that have happened and WILL continue to happen unless some serious action is taken.

This should have stopped yesterday. Time is not on our side in this fucking war.

Where are all the funds these kids need and deserve????? What is going on in this mad, mad world that they are all tossed aside as if they do not matter? If you can purposely be blind to something like this, I question your soul.

FUCK YOU, CANCER.

A trip to San Francisco for the saddest reason possible.

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Ronan. I am quite simply emotionally beat. This trip was a lot harder than I had anticipated. I kept telling myself I was going to be fine, that I would be able to hold it together like a champ. For the most part I did, but the few days I was here was full of a lot of tears anyway. Macy picked me up from the airport and I was greeted by my beautiful friend and the wonderful rain. Or your tears as I like to call them. We headed back to her place and had plans to go out to dinner. She had made reservations to take me to dinner for my upcoming birthday. We ended up canceling our reservations due to the fact that I was absolutely wiped and in no way could muster up the energy to leave her cozy place and head into the city for dinner. We ended up grabbing take out instead and dined in our pajamas. It was a very sweet and perfect night with my dear friend.

We woke up the next morning and grabbed some breakfast before Teddy’s services. On the drive over, Macy kept looking at me and asking me if I was going to be alright. I gave her my most confident, “I’m totally fine!” response. We arrived with plenty of time to spare and Macy dropped me off up front so she could go and park. I walked into the synagogue where Teddy’s service was being held. It took me a few minutes before I saw Teddy’s mom, Clarence. As soon as I laid my eyes on her, it was game over. I embraced her for a hug and instantly lost it. I was the one who was supposed to be strong today for her, but here she was being strong for me. She whispered something like there would be plenty of time for tears inside. I tried to pull myself together as much as I could and said something to her but I honestly don’t even remember what. We parted ways and I found myself making my way over to a little table they had set up. It was lit with candles and had some pictures of Teddy, you and another little girl who had lost her battle with Neuroblastoma as well. I swear I felt myself leave my own body as I stared at the little picture of your face in front of me. “Who is that beautiful child,?” I thought to myself. I felt myself get smacked across the face when I cam back to reality only to realize that child in fact, was you. I walked away to find Macy and grabbed onto her so we could go inside to find some seats. Once we sat down, she left me to go and use the restroom. I sat there, alone although the place was filled with people. I felt myself lose all control seeing Teddy’s pictures everywhere and of his favorite things displayed in front of me. As soon as Macy came back, I was a total mess, sobbing hysterically. I looked up at her and spat out through my tears and snot, “I thought I was going to be alright.” She sat down next to me, grabbed my hand and let me cry on her shoulder while her tears fell all over me as well. Drip, drop, drip, drop went Macy’s tears all over my hand. I felt like I was getting a shower. I grabbed the kleenex I had and gave her some. The next couple of hours we pretty much cried non-stop. I don’t think I even shed a tear at your funeral/celebration of life/bullshit because you shouldn’t have died. I remember being so numb to it all. I was not numb on Sunday. If anything, I felt more than I have felt in a very long time. It was a beautiful day for the most fucked up reason of all. I don’t even feel right calling it a beautiful day. A beautiful day because a 3 and a half-year old died of cancer just seems so wrong to even say. It was a fucking fucked up day but due to Teddy and everything he is… beauty shined through anyway.
I had an empty seat next to me the entire time. I kept telling myself you were sitting there with me. That there was a reason in this packed synagogue, that the seat next to me remained empty. I truly believe that in my heart, you were sitting by my side. I kept picturing you holding on to my hand. At one point, I couldn’t take it anymore. I had to get up and get some air. I found myself outside and before I knew it I was comforting a stranger that was sobbing on a bench. A neighbor of Teddy’s I think. She didn’t have any kids of her own but had been through all of this with Teddy and his family. I sat there and held this stranger, telling her how sorry I was. She looked like she was going to pass out so I sat with her until she insisted that she was alright. I went back inside and sat back down by Macy. One of Teddy’s doctors got up to speak. It was the most heart-warming, gut-wrenching thing I have ever listened to. The way he spoke about Teddy and the love he has for him was truly remarkable and something so special. He talked about how when Teddy died, not only did he die, but his future died as well. How Teddy may have grown up to be a physicist curing diseases or a great musician like his dad, but now we will never know because Teddy has no future. He will never have a future and how wrong it is that childhood cancer does not get the attention or the funding that it deserves. I think about this all the time. How I know for a fact that you would have grow up to do something absolutely amazing, but now you will never get the chance and neither will all of these other kids who are being murdered by cancer. Futures of these kids are being thrown away left and right and nobody seems to give a fuck. How is that acceptable? How the fuck do people sleep at night, knowing this? I know that it is now my responsibly to give you the future you were robbed of by making something extraordinary come from your death. It is my job, as your mama to give you the future that you cannot have here living on this earth.
Teddy’s day was truly all about Teddy. There was no talk about Teddy being called home to be with Jesus. There was no talk about Teddy being in a better place. There was no talk about Teddy earning his angel wings. You know I appreciated all of that so much. Angel wings on a kid makes me fucking sick to my stomach. I guarantee no child wants to “earn,” their fucking angel wings. Angel wings should be reserved for the rights of people who have lived a very long life. I can handle angel wings then. Angel wings on a child is just another something our bullshit society created up to make it seem liked the death of a child is a-fucking-o.k. Such bullshit. After Teddy’s day ended, Macy and I gave our hugs goodbye and headed out. My eyes were so blurry from crying so hard that the only way I made it to Macy’s car was by my arm being looped through hers. I was so glad she was there with me. She is the only one I wanted by my side. Macy is not just my dear, sweet, best friend, Ronan. Macy is my sister. Macy is family. I’ve always known this, but Sunday really proved it. She sat there with me, the way she sat at your service and has never left my side. Time and time again, Macy goes above and beyond for me and our family. I am so, so, so, very lucky to have her in our life. I cannot tell you how much of a gift she has been to all of us. I love you, Macy. Thank you for being my everything.
We spent the rest of the night trying to recover from our day. My mind kept going back to Teddy’s mom, dad, and sweet brother Leo. I am heartbroken for them all because I have a good idea of what is to come and it is not pretty. Living a life everyday without your child is the hardest thing on the planet to do. I would give anything for them not to know this pain. I was blown away by the strength they all showed on Teddy’s day. I know that in the end it will be Teddy’s love that will get them through this the exact same way your love is getting us through our own horrific nightmare. It’s the only way one goes on after something like this. The love they have for Teddy and the love he has for them will always be there and will help them through their darkest hours which will never end. Your pain over losing a child never goes away. It will live on with them forever the same way their love for one another does. Pain and love will forever go hand in hand. As Macy and I were driving in the car we had it on some random radio station. You favorite song came on, “Keep on Rocking in the free world,” by Neil Young. I smiled when I heard it as I always do and pictured you dancing around to it. The next song that came on was “Somebody I used to know,” by Goyte. I said to Macy. “Did you hear that?! Ronan’s favorite song and now Teddy’s!” There had been much talk earlier that day about how much Teddy loved that song and used to make everyone at the clinic dance to it as he would play it over and over. I don’t think that was a coincidence, Ro. I think that was your way of telling me you and Teddy are together, riding trains with your light sabers. I’m just sorry it has to be somewhere else and not down here where it should be. We spent the rest of the evening curled up in Macy’s bed watching episodes of, “Girls.” We both were in desperate need of some laughter and knew that one of our favorite shows, would do the trick.
The next day we had a date with Lynne from Lucas studios. It dawned on me that it might be hard to go back there since the last time we were there it was with you, but of course I pushed that aside because once again I thought, I can handle this. Macy drove us and as we pulled up to the parking lot I felt my stomach drop. We parked and both looked at one another. Uh oh. I knew this was not going to be good. Macy’s eyes were full of tears. We were parked in the same spot that you had chased her around with your light saber. I did my best, “Come on! We can do this!” talk as I pushed back my own tears. She said to give her a minute so she could compose herself. I led the way past the little walkway where I could so picture you running and hear your laugh. We made it past the Master Yoda foundation where we posed for countless photos. I took a deep breath and opened the doors to the inside world where I had spent one of the best days of my life with you. We checked in and went over to wait for Lynne.
I sat down and Macy sat down in front of me. I started sobbing.
Me- “I can’t look at you right now. Fuck! Stop looking at me, you’re just making me cry harder!!”
Macy- “You stop looking at me!
Me- “I’m not looking at you! You’re looking at me! Oh my god! We have to pull our shit together! We can’t be hysterical when Lynne gets here!”
Macy- “I don’t know if I can! I can’t stop crying!”
I had your favorite Star Wars guy in my purse because I take him everywhere.
Me- “Here! I brought Captain Rex. Focus on Captain Rex! Deep breaths!”
Macy- “O.k. Captain Rex. Focusing on Captain Rex.”
By the time Lynne got to us we were much more composed. But of course we both ended up wiping away more tears in front of her when we told her that we had been there with you. She could not have been sweeter and said that she had thought we had taken you to the ranch and not the studios when we came for a visit. She then gave me a big hug and told me she was so sorry. I smiled and told her thank you, that we would be alright. We spent the next couple of hours with Lynne, walking in all the little places you ran around and grabbed a bite to eat with her as well. It was hard being there but I was so thankful for getting to spend some time with someone I’ve been wanting to meet for a very long time.
I’m on my way back to Phoenix now. I’m tired. I feel like I’ve been crying for weeks but I also know that it was a release I very much needed. I am so glad I went on this trip to honor that little boy who will remain in my heart, forever. He touched me in such a way, Ronan that I cannot explain. While I was sitting at his service, staring at his pictures I said in my head, “Teddy. I promise to fix this for you, too. I promise I will not stop until things get better.” I won’t break my promise to either of you. Do you know what else I thought, Ronan? I kept thinking If President Obama or some other big wig politicians were sitting in this room, listening to the story about this little boy’s life and all he had to endure, I am quite certain that childhood cancer would be at the top of their priority list. Without a doubt, they would want to fix this problem. How can I make that one happen? Then my head of course went to the most dramatic place possible which was me living in front of the white house, in a tent, with bald headed, beaten up and bloodied baby dolls lining the gates of the White House with IV poles and vomit everywhere. Then I remember Poppy and your brothers. Fuck. I don’t’ think they would do very well, living out of a tent with me. There has got to be another way to make our President listen. I just need to figure out what exactly that looks like.
I’m landing soon. I cried as I left San Francisco. I kept thinking of you and that video I have of your from our trip here with you. “Bye Macy!!!!! See you soon!!!” you squeaked in your little voice.
Goodnight, Ronan. I miss you. I love you. I hope you are safe.
xoxo

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I might be normal. Or I might just be crazy. Or I might be a little of both. I will never be the same again. Unless you can bring him back.

The parent-child bond is one of the most meaningful relationships a person will experience. Parents who have lost a child can often feel that a part of them has died. The despair and pain that follow a child’s death is thought by many to exceed all other experiences. Parents are simply not supposed to outlive their children and no parent is prepared for a child’s death.

The length of a child’s life does not determine the size of the loss. Parents are intimately involved in the daily lives of young children, and their child’s death changes every aspect of family life, often leaving an enormous emptiness. Parents may be less involved in the everyday lives of older children and adolescents, but death at this age occurs just when children are beginning to reach their potential and become independent individuals. When an adult child dies, parents not only lose a child, but often a close friend, a link to grandchildren, and an irreplaceable source of emotional and practical support. Parents who lose an only child also lose their identity as parents, and perhaps the possibility of grandchildren.

When any child dies, parents grieve the loss of possibilities and all the hopes and dreams they had for their child. They grieve the potential that will never be realized and the experiences they will never share. When a child dies, a part of the future dies along with them.

Common grief reactions

Grief reactions following the death of a child are similar to those following other losses, but are often more intense and last longer. Parents commonly experience the following grief reactions:

  • Intense shock, confusion, disbelief, and denial—even if the child’s death was expected
  • Overwhelming sadness and despair, such that facing daily tasks or even getting out of bed can seem impossible
  • Extreme guilt—some parents will feel they have failed in their role as their child’s protector and will dwell on what they could have done differently
  • Intense anger and feelings of bitterness and unfairness at a life left unfulfilled
  • Fear or dread of being alone and over protecting their surviving children
  • Feelings of resentment toward parents with healthy children
  • Feeling that life has no meaning and wishing to be released from the pain or to join the deceased child
  • Questioning or loss of faith or spiritual beliefs—assumptions about the world and how things should be do not fit with the reality of a child’s death
  • Dreaming about the child or feeling the child’s presence nearby
  • Feeling intense loneliness and isolation, even when with other people—parents often feel that the magnitude of their loss separates them from others and that no one can truly understand how they feel

Read more about common expressions of grief and loss.

Some people expect that grief should be resolved over a specific time, such as a year, but this is not true. The initial severe reactions are not experienced continuously with such intensity; rather periods of intense grief come and go over a period of 18 months or more. Over time, waves of grief gradually become less intense and less frequent, but feelings of sadness and loss will likely always remain.

Developmental milestones in the lives of other children can trigger emotions of grief even years after a child’s death. Significant days such as graduations, weddings, or the first day of a new school year are common grief triggers. Parents often find themselves thinking about how old their child would be or what he or she would look like or be doing if he or she were still alive.

Gender differences in grieving

Mothers and fathers may grieve in different ways. One parent may find talking helps, while the other may need quiet time to grieve alone. Cultural expectations and role differences also affect how men and women grieve. Men are often expected to control their emotions, to be strong, and to take charge of the family. Women may be expected to cry openly and to want to talk about their grief. A working father may become more involved in his job to escape the sadness and daily reminders at home. A stay-at-home mother may be surrounded by constant reminders and may feel she lacks a purpose now that her job as caregiver has abruptly ended. This is especially true for a parent who spent months or even years caring for a child with cancer.

Differences in grieving can cause relationship difficulties at a time when parents need each other’s support the most. One parent may believe that the other is not grieving properly or that a lack of open grief means he or she loved the child less. It is important for parents to talk openly about their grief and for each parent to understand and accept the other’s coping style.

Helping siblings who are grieving

Parents are the focus of attention when a child dies and the grief of siblings is sometimes overlooked. The death of a sibling is a tremendous loss for a child—they lose a family member, a confidant, and a life-long friend. Parents are often preoccupied with the needs of a sick child and then become overwhelmed with their own grief when the child dies. The surviving siblings may misinterpret the parents’ grief as a message that they are not as valued as much as the child who died. Learn more about how to help a child or teenager who is grieving. In addition, parents can help siblings during this time of grief by:

  • Making grief a shared family experience and including children in discussions about memorial plans.
  • Spending as much time as possible with the surviving children, such as talking about the deceased child, just playing together, or doing something enjoyable.
  • Making sure siblings understand that they are not responsible for the child’s death and help them let go of regrets and guilt.
  • Never compare siblings to the deceased child and make sure children know that you don’t expect them to “fill in” for the deceased child.
  • Set reasonable limits on their behavior, but try not to be either overprotective or overly permissive. It is normal to feel protective of surviving children.
  • Ask a close family member or friend to spend extra time with siblings if your own grief prevents you from giving them the attention they need.

Continue reading more on how to cope with losing a sibling to cancer.

Helping yourself grieve

As much as it hurts, it is natural and normal to grieve. Some parents find the following suggestions helpful while grieving:

  • Talk about your child often and use his or her name.
  • Ask family and friends for help with housework, errands, and taking care of other children. This will give you important time to think, remember, and grieve.
  • Take time deciding what to do with your child’s belongings—don’t rush to pack up your child’s room or to give away toys and clothes.
  • Prepare ahead of time for how to respond to difficult questions like “How many children do you have?” or comments like “At least you have other children.”Remember that people aren’t trying to hurt you; they just don’t know what to say.
  • Prepare for how you want to spend significant days, such as your child’s birthday or the anniversary of your child’s death. You may want to spend the day looking at photos and sharing memories or start a family tradition such as planting flowers.
  • Because of the intensity and isolation of parental grief, parents may especially benefit from a support group where they can share their experiences with other parents who understand their grief and can offer hope.

Read more on coping strategies for when you are grieving.

Finding meaning in life

Parents report that they never really “get over” the death of a child, but rather learn to live with the loss. The death of a child may compel parents to reconsider their priorities and reëxamine the meaning of life. It may seem impossible to newly grieving parents, but parents do go on to find happiness and reinvest in life again. An important step for many parents is to create a legacy for their child Parents may choose to honor their child by volunteering at a local hospital or a cancer support organization. Or, parents may work to support interests their child once had, start a memorial fund, or plant trees in their child’s memory. It is important to remember that it is never disloyal to the deceased child to re-engage in life and to find pleasure in new experiences.

Every child changes the lives of his or her parents. Children show us new ways to love, new things to find joy in, and new ways look to at the world. A part of each child’s legacy is that the changes he or she brings to a family continue after the child’s death. The memories of joyful moments you spent with your child and the love you shared will live on and always be part of you.

I’m having a white party tomorrow. Do you think P Diddy would want to come?

Ronan. Do you know how I feel tonight? Hollow. Empty. I swear, it’s just one thing after another. I just had a Mother’s Day that no mother would ever want. All after your death day, your birthday/the day you were cremated (on your fucking birthday), Mother’s Day, and now tomorrow, is the day we had your fucking services, last year. May is a sick fucking joke. Next year, I am going to Iceland for May and living in a fucking igloo and ignoring May, all together. I came home from our trip, numb. I am totally numb again. How can I not be? I’m numb without the help of any anti-depressants. The one’s that everyone wanted to numb me with and still want to numb me with. I’m still here screaming that I don’t want to be numb. I will feel this, the way I am supposed to feel this and not by taking medications to help me not feel this. I want to feel this. I deserve to feel this pain. I am strong enough to handle it, no matter how much it hurts. I think my body is having a natural numbness physical reaction, all on it’s own. Because these dates, right after another, are just too much.

Mother’s Day was banned. Well, at least it was in my head. I let Liam and Quinn still think it was happening, because I don’t want to ruin everything for them. I took Mother’s Day and turned it into a day, all about them. I had a Liam and Quinn day and didn’t make a peep. I don’t think I even cried. See, I told you I was numb. We went to a Red Sox game, which they LOVED. We went and had a BBQ dinner at our friends’ house and they loved that just as much. We let our 4 kids run around and play with each other, but it still should have been 6. We sat with our friends into the night, talking normal talk and cancer talk. That’s the way it will always be. But it was easier with these friends, to be around them on Mother’s Day. I took comfort in all of our sadness on this “Happy Day,” of the year. I sat and thought a lot about your Fairy RoMo. I texted her it was indeed not Mother’s Day but Fairy RoMo day instead! I told her how you would have went craaaaazy over her Goldilocks hair and I know she would have loved you like her own. I am changing Mother’s Day to Fairy RoMo day. Because the love/kindness/support/and heart of your Fairy RoMo should be celebrated on this day. So it was, for her. I let my thoughts soften a bit while thinking about all the beauty that just exudes out of her, all the time. Like there is just sparkly glitter falling from the sky, when she is near. That’s how I feel anyway. It makes me feel peaceful, happy and inspired. There is that lucky world again, Ro. I am so lucky, to have her in our lives. Thanks for bringing us to each other. Another one of your little gifts, I know.

We made it home now and all I want to is run screaming back to Maine. Preferably Cape Elizabeth where I totally left my broken heart. I could see my broken heart mending there, quite well. You know what I felt while we were there, besides sad? Peaceful, calm, quiet, relaxed… I felt the pieces of me, that I miss so much. Your brothers felt it too. For such an awful reason to go away, Ro baby, it was the best place we could have possibly went. Maine and Cape Cod. Your brothers were so in their element there. They were so happy and carefree. They were so sweet and we spent so much time, outdoors playing in the beach, on rocks, on logs, in the water, in the woods, getting lost with each other and slipping into their childhood that they should know. The only childhood they should know where their baby brother, does not get cancer and die. It should have been the 5 of us there, Ronan. My heart is ripped to shreds that it is not and never will be again. But your brothers, they are happy. I guess that means your daddy and I are doing a good job, despite all of this. I don’t know how, but we just keep skipping along, not missing a beat because now, only their happiness is what matters to me. Mine can wait. I can put mine on hold, forever. Liam and Quinn will not be robbed of anymore happiness. They are too good of boys to have anymore hurt come a long. So, Ro… I still cry in front of them. But not as often. I laugh more with them and hide all the guilt that washes over me when I do. Guilt that they do not need to see or hear about. Adult guilt that I hope they never have to know about, in this way. Your dead child guilt where everything you do feels wrong… even telling another little boy at a hospital how brave he is while you are in visiting him. FUCK. Did I really just tell him he was brave. OH MY GOD. I only used to tell Ronan that. I just betrayed, Ronan. Fuck. I have to leave. I do. Tears pouring. Ronan. I’m sorry. You were the bravest little boy, I’ve ever known. I’m sorry if that hurt your feelings. I tell you thinks like this all the time because the guilt never goes away. It’s heavy to carry but that’s just the way it is. Once your child dies, you don’t stop taking care of them. It just continues on in a different form. I still have 3 kids to take care of. Why else would I be doing your Foundation, Ro? My number one reason is it is my way of still being your mom, still taking care of you, and still doing a really good job at it. A job that is going to be done, so well due to how much I love you and you love me. This is why your foundation will change things. Because our love is powerful enough to do so and because I promised to fight for these kids and families until things start to get better. Like a freaking CURE for Neuroblastoma. Let’s start with that. That is what we are going to do with our passion, drive, energy and love. We are going to help these doctors but we are also going to help these families. No family should feel so alone in this, the way we did. It was wrong, wrong, wrong. I have a big list of things that need to be fixed. I’ve been working on that list with Dr. JoRo. We will get to each and every thing, one by one so that maybe a family will not just feel like another number. They deserve so much more than that.

Tomorrow is May 15th. The day we had your services last year and I remember NOTHING about it. I think I smiled a lot. I think I did the “Thank you for coming.” I think I thought I was floating on air and I probably was. I wore white. Everyone did. So for tomorrow, it only makes sense to wear all white again. I’ll do this, on this day, every year for the rest of my life. I’m having my own White Party and P Diddy is not invited. Unless he wants to donate a fuckton of money to Ronan so we can start to put our master plan into place. The master plan starts soon. I’m running with it because I have to. Because it is a good idea. Because it is so needed. So, P Diddy, you can come to my White Party tomorrow but be prepared to bring your big fat checkbook. I only need about 10 million dollars. My White Party might suck compared to the fancy one’s you throw every year. With all your fancy people, cars, clothes, etc…. My white party is just going to be me and my son’s Urn. We might have a dance party together. He loved to have dance parties. My party will probably involve tears, but they will be the saddest tears you’ve ever seen for the most beautiful little boy who ever lived. They don’t all have to be sad, they could be happy ones too because I think you might come to the conclusion that my White Party kicks the shit out of yours just for the cause alone. You know, just trying to save some kids’ lives. Cancer Kids who live right here, in the U.S.A. We’ve got a lot of problems of our own, right here. I wish you celeb types would stop and look around here. You could help save so many of these babies who don’t even know how to fight, but they are the strongest fighters I’ve ever seen in my life. They are the true heroes, warriors, fighters. They deserve to have a strong voice to start stepping up and helping them. They deserve to have a chance at growing up. I don’t want anymore families to go through what we have gone through. What we have lost which is everything. Ronan was EVERYTHING to our entire family, not just me. He was everything to Woody, Liam and Quinn. I don’t want what happened to us, to happen to anyone else which is why people like P Diddy need to start helping. People listen to celebs.They need to start focusing on Childhood Cancer. It is worth fighting for with everything you have. Because what if it were your child? Wouldn’t you want to know, the best of everything was out there and the survival rates had improved?? Of course you would but this takes work, money, research, education, and dedication. All of those things seem so easily accessible when you look at these kids whom you are fighting for. Each and every one of them, are worth it and they need to stop being overlooked.

Yeah. That would be my rant and rave for the night. (shout out to AMBIEN) which I have not taken in weeks, but tonight, coming home to your empty bed about threw me over the edge. I needed a night to peace out. So, tomorrow is an all white day for me. That’s what I’m doing. I also might just take Ro’s Urn out with me everywhere I go. I’m kinda serious about that. I do need to invest in that baby Bjorn. Grocery store, here we come!!!

G’nite Ro baby. I miss you. I love you. I hope you are safe. I’ve come to the conclusion that you were just too perfect and beautiful for this world, so you are someplace so much better… just waiting for me. I’ll see you when it’s my time. I love you, little man.

xoxo

30 day challenge of mother fucking madness

 

Ronan. The 30 day yoga challenge. I have a friend who is crazy enough and actually did this. Kudos to D. She is crazy in all the best ways. And she loves her yoga. I do not love yoga. I am quite sure, if I were to try to contain myself in a calming, peaceful environment of yoga, that I would go all turrets on their asses and start freaking out/screaming/crying/puking about how I have a fucking dead kid so NOTHING is Zen, NOTHING is Ommmm and I would like to beat the bloody hell out of the Chakras that surround me. I’m pretty sure I would get kicked out of a yoga class, while offending everyone which does sound pretty badass and dangerous… so it’s a little tempting. If I didn’t respect the whole yoga thing so much, I would totally do this. But I secretly love yoga. I’m envious of those who do it, love it, and are better people because of it. I used to love it, Ronan. Before all of this. Now… I’m just not ready to go back.

I’ve come up with my own 30 day challenge, instead. I started it on Monday. It’s called Maya’s 30 day challenge of mother fucking madness. And the weather is getting hotter, which makes it even better. I spent 3 hours on Monday and 3 hours today, hiking/running/puking/crying/spitting/tripping/getting a rad tan. Skin cancer here I come!!!! I’ve decided to have 30 days of hiking for 3-5 hours a day in complete and total silence. I’ve already told your daddy, that it’s 30 days of solitude. 30 days of not talking to anyone because I’m really on a retreat to Italy/India/Indonesia like that Elizabeth Gilbert wah wah wah, my life is so bad, chick. When in reality, your life is freaking awesome lady. Plus, you got to travel to all of those places, solo, and figure your shit out. Unfortunately, I cannot do that, due to having a thing back here called 2 babes to take care of and a husband. This is my modified version of your little trip, Elizabeth Gilbert or whatever your name is. I think I totally have a one up on you though, due to having a dead kid, so kudos’ for that! One of those little silver linings in life that just makes everything o.k.! I am being sarcastic. Because I am in a pissy/sarcastic mood.

So, I started this on Monday and so far, I have not died. I have visions of dying out there though due to the heat/rattlesnakes/weird scary men that appear out of nowhere! when I am in the middle of nowhere!, alone! Rita! I freaking told you I needed a machete! You are going to be really upset if I get attacked and have nothing on me, to protect myself! I have many reasons as to why I am doing this. One being because if I don’t, I quite simply will stay barricaded up in my house, in my bed, crying. Two being because I need to be with you, Ronan. And being alone, hiking is where I feel closest to you. Three being I need the quietness in my head, or to deal with the screaming in my head by talking to Inferno Fuckwad Bob, alone. My head feels foggy. It feels less foggy when I am out, being active and dealing with this grief but in my way, the solitude way. Isolation. 30 days of intense hiking/isolation/how the fuck am I going to get through this? You’d better start figuring this out. You’d better start taking some control of some things. You’d better start because Ronan, as you told Dr. JoRo, in her dream…. “I can’t get to my mom, because she’s too angry. Tell her that, please.” She couldn’t tell me that for a while. She just told me that, last week. She has watched me struggle with this anger. I told her I was less angry and just more sad now. She decided that it was the right time, to tell me the last thing that you said to her, in her dream. FUCK. We both figured out when it is that I hide the most. It’s when I’m angry. It’s because to me, anger is shameful. It makes me feel dirty, like I need to take a shower and scrub, scrub, scrub. I’ve never been an angry person. I don’t know how to handle it. I’m pretty sure I have done/said hurtful things while being angry. I don’t want to hurt anyone so when I am feeling super angry, I hide. If I hide, I cannot hurt anyone with the stupid/mean things that may come flying out of my mouth. I’d rather just deal with my anger and take it out on myself, like on a mountain where I can beat myself up. Where I can find moments of quiet. Where I can scream, cry, bloody my knuckles and nobody has to see me. This is what I am doing, every single day until May 2nd. Plus, Dr. JoRo is freaking leaving me for 2 weeks! Um excuse me! If I don’t do this/and she is gone I am going to go bat shit crazy!

So, this is what I’m doing. I have no doubt that I will be up that mountain for hours upon hours for the next 30 days. I don’t know what I am looking for. All I know at this point is I kind of want to die but I also want to kind of stay alive. I’m just leaving it in the hands of the fates at this point. The exercise feels good to me. The not listening to music, feels good to me. The just being with my grief/sadness hurts like hell but it’s not going anywhere. I’m going to go and join it and truly join it, alone. I’m not filling my days with things/lunches/nail parties/all things I need to take a break from. I’m going to fill my days with silence/dirt/nature/barefoot hiking/blisters/cut feet/sunburns/isolation and solitude.

This is my plan. It’s not much but this is what my heart is telling me I need to do if I want to survive this next month that is coming up. Power through April and maybe it will help you to figure out May.

I’m sleepy, Ro. You would be so proud of your brothers tonight and their baseball game. They looked so great and happy. We all miss you so much. Tonight Quinn got blamed for doing something by your daddy that he says he didn’t do. I looked at him and said, “Just blame it on Ronan.” He giggled. We both yelled out, “Ronan did it!” That made us laugh even harder. And then we got sad because you weren’t here to do it, so we snuggled up together and I just held him and we quietly talked about you.

Your Sparkly said it best. Nobody deserves this. But especially not you. Especially not me. Especially not us. I told him it was you I am saddest for. You deserved so much better. You deserved so much more. You were robbed of living the most beautiful life. I am the saddest for you, always. I love you. I miss you. I hope you are safe. Sweet dreams, baby doll.

xoxo

Time, compassion, remembrance and empathy does not come in the form of a pill.

She is changing the world. She is getting shit done. She is moving mountains. She is on of the biggest reasons that I am alive. She is responsible for saving my life. I am thankful every single hell on earth day for her. I love you, Dr. JoRo.

http://drjoanne.blogspot.com/2012/03/relativity-applies-to-physics-not.html

Happy Birthday, Johnny and I love you, Ro.

 

Ro baby. I have a lot to say tonight, but Liam is not feeling well so I need to take care of him. I found some videos of you. I watched them. I cried. You have some crazy good dance moves. I love you. I miss you. I hope you are safe and rocking out with Johnny Cash tonight, since it is his birthday. I’ve gotta take care of Liam now. I miss taking care of you so much. G’night baby boy. I love you to the moon and back.

xoxo

A high speed train to nowhere that leads everywhere

Ronan. Substance and Passion. Those are the two words that will not shut up in my head. Those are the two words that I have found on this trip. I think if you have those two words behind everything you do in life, you can do anything. I have done a lot of “things,” since I’ve been here. So much that I feel like I have been here for weeks not merely 4 days. I don’t even remember when I wrote to you last. I think it was on the train to D.C. I have been pretty unplugged here. No computer. No T.V. and guess what the best part is? No screaming voices in my head. They have totally disappeared. Do you know whose voice I’ve heard in my head since I’ve been here? Yours and only yours. I have found so much strength on this trip and I am really hoping it is just not due to being in New York City…. the city that I always feel the strongest in. Or if it is, I really hope I can carry this strength all the way back to Arizona with me and keep it around more often than it has been.

I don’t even know where to start with the Washington D.C. thing. How do you put into words a day and night were you literally feel yourself coming back to life, after being dead? I haven’t the slightest clue but I’ll try find the words to try to do it justice. I got invited to D.C. by my real life, fairy RoMother. I have decided to change the word “GodMother,” to “RoMother,” because I have issues with that asshole and all he stands for. And RoMother is just so much more fitting for this person. Because it is all things kind, pure, and beautiful just like you. It’s been a long time coming, meeting this RoMother of mine. She has quietly been behind the scenes, making big things happen in your name. She asked me a few weeks ago if I wanted to come to Washington D.C. with her and her husband to attend Annie Leibovtiz’s latest show, Pilgrimage, which is being featured at The Smithsonian. I think her words started with, “If your up for a little adventure…….” All I needed was to hear was the word adventure, and I was sold. It turns out this little adventure had to do with one of her lovies, Annie or Al as she calls her. I, of course jumped at the chance as it not only meant getting to meet this beautiful Rosoul of ours, but spending some much overdue time with her as well. Oh, and not to mention the fact that one of the greatest icons in the world was thrown into the mix. And you know my secret obsession with photography. I have been documenting things in this so called life since before I hit puberty. I told K I would be honored to come to the show with her and she told me that Annie was touched that I was coming. Um what? Annie’s touched? Is the world ending? Are pigs flying? No. None of those things are happening but you died so I have no choice but to embrace these gifts that you are throwing my way. You are working so hard babydoll. I just hope I can keep up.
I told K I would meet her on the train. She said, “Cool! It will be something like out of a Hitchcock movie!” I cracked up at this. She is so freaking RAD. I got on the train to Washington D.C. Our little fairy RoMother found me on board. I got to give her the hug I had been saving for her, for so long. I was already settled in my seat next to some stranger when she found me. Katherine and her hubby went into a different car to meet up with one of their good friends who was along for the trip as well. A few minutes later, K appeared and hijacked me into moving seats, to come up and sit with them. She introduced me to her friend and we settled into an easy conversation as we sailed through the world on a high-speed train, to our unknown destination, we joked. The scene outside looked like something from the movie, “Twilight.” It was dark, dreary, foggy, and cold. So mysterious. So Hitchcock. In other words, my heaven. I watched the trees fly by. I held your GiGi on my lap and buried my face in it a lot. I saw a Billboard sign that read, “Jesus Saves.” I thought to myself, “That is so fucking offensive. Jesus didn’t save my son. Jesus isn’t saving all of these other beautiful souls.” I got mad and told Jesus to shove it up his ass. I wish I would have had a machine gun strapped to my body so I could have blown 1000 fucking holes in that sign. I didn’t so I scribbled in my journal about it instead.
We arrived in D.C. and were whisked off to the hotel. We got checked in and we all decided to tool around the city for a few hours before Annie’s show. I spent the next few hours smiling like I have not smiled in a very long time. Here I was, with these 3 strangers who did not feel like strangers at all as I was so comfortable. Katherine’s husband, Mark gave me a personal tour of every single monument we set eyes on. And it was so much more than anything you could ever learn while sitting in a history class for school. It was more like a history class for life as I listened to this man share with me his knowledge of things that came from so much more than a book. We grabbed a quick bite to eat and before we knew it, it was time to get back to the hotel so we could get ready for Annie’s show. We all took about an hour to rest/shower/change/dress and head out the door. I wore my black jeans, a red jacket with a black skull shirt underneath it that Dr. JoRo gave me. I of course, had to represent the grief look that I carry around with me 24/7. Dr. JoRo’s skull shirt was the perfect item of clothing to do this. And of course the gold locket with your ashes in it that I always wear around my neck. I wouldn’t leave home, without you. Ever.
We arrived at The Smithsonian for Annie’s private show. I was not sure what to expect except for I knew I was in very good hands so it would be nothing short of amazing. I let K lead me around and she introduced me to every single person we came into contact with as her friend, Maya. Everyone knew her and I watched the ways their eyes lit up in her presence and how happy every single person was to see her. What an amazing soul. Not many people can elude a light around them the way K does. It’s so bright and warm that everyone just soaks it up. She is the kind of person that makes you want to be better person because everything she does is fueled with passion and kindness. And a little kick ass badassness as well. My kind of girl for sure:) We went up to see Annie’s show. To say that it was genius does not even begin to describe it. The beauty of her pictures was so powerful that it left me spending much of the night, wiping tears from my eyes. It was so electic and different from anything she has ever done before. Her latest show focuses more on the beauty of America. She featured the lives of so many influential people who even though they are gone, continue to live on due to the mark they made in the world while they were here. I spent the night getting lost in the world of Emily Dickinson, Ralph Waldo Emerson, and my favorite piece of the night… Annie Oakley’s heart target. Oh, how that piece spoke to me. The story behind it, is incredible too.You could see that Annie poured her heart and her soul into this project. Her beautiful work, speaks for itself. I had heard that she took this on due to going through some hard times. I hope it helped to heal her heart a little. Just the little time I spent looking at her work, it helped to heal mine. I cannot imagine being the one on the other side of the camera, who took those pictures and made them into art. It must have been so cathartic. At least I hope it was. Otherwise, what else is the point? A woman who spends so much time, bringing happiness to others, through her work, deserves happiness as well. So much happiness.We spent a couple of hours at the event and then Katherine took me and introduced me to Annie. When I first saw her, I thought to myself, she is so beautiful. She looked so happy and proud of her work. A true artist who is so well known that she is a household name. But at the end of the day, she’s just a mom like me. If I would have ever been starstruck at anyone in my life, it would have been her. But that’s not the way I felt when I met her. What really registered with me is that she is a mom who has unconditional love for her daughters the way I love you and your brothers. She is a mom who has had a very successful life due to working hard, fighting for what she believes in and following her heart. Those are the things I admire most about her. Those things can take you to a whole new level while living on this earth. Katherine introduced me to Annie who embraced me for a big hug. I got choked up, told her it was an honor to meet her, and thanked her for such an amazing show. The next thing I knew we were all aboard Annie’s private bus to take us back to the hotel where we were staying. Annie came on the bus and everyone broke out cheering, clapping, and screaming for her. I had a moment when I thought to myself, “HOLY SHIT! I’m on a party bus with Annie Leibovitz!” But then I remembered the price I had paid for this seat which is ultimately your death. We both know I would not be doing things like this if it were not for you. I’m just sorry you had to die in order for beautiful things like this to happen in my life. But it is because you were so beautiful, that these things are happening. Because so many people in this world know things have to change and they are going to help us do this. I am truly thankful for that. So thankful and humbled, Ronan. The Annie party bus thing sent me into a fit of giggles and I thanked you for all the little things that you are doing. As soon as we got off the bus, I was walking into the hotel with Annie right next to me. I just looked at her and said, ” As a mom whose heart is broken into a million pieces, I just want to thank you for giving me a break from that tonight by letting me get lost in your work and your world.” She looked at me and said how sorry she was and that she could not imagine going through something like this. I said I knew. Nobody can.

Everyone filled up the hotel bar where I sucked down waters and mingled with the kindest people. We ate a little food, talked about Annie’s show, and talked about you a lot too. We talked a lot about childhood cancer and how wrong it is that nobody wants to pay attention. This is not going to be the case much longer, Ro. Not if I have anything to do with it. It seems to me like a lot of people are paying attention now. It seems to me like there are going to be a lot of changes and I know it is all because of you and because of our love story that is never going to end. I ended the night with my new friend, Jesse and his husband. Jesse is the one who sent you the signed Annie Leibovitz Star Wars poster. Another doing of your little RoMother. Jesse was so excited to meet me and had tears in his eyes the entire hour we spent talking about you. His husband lost a good friend to cancer who was really young and he was so proud to wear the “Fuck you cancer,” bracelet that I gave him. He said his friend who had cancer wore a hat that said this all the time. Because we all know if anything deserves the FUCK word most in life, it is cancer. I headed back up to my room about 1 a.m. and was beat. It took me awhile to settle down as my head was still spinning from the nights events.
We all took the train back to New York the following day. It’s been non-stop since returning from D.C. I had dinner with your old Sloan roommate, Phoebe’s mom, Ellen. It was so nice to see her and hear all about how Phoebe is doing. She is not walking yet but she is getting closer. I got to see a picture of her hair that is growing back in. She is so beautiful. She is so strong. She was so strong before all of this and it is such bullshit all that she has had to go through in order to “prove” her strength. She is here though and I know Ellen is so thankful for that. I would give anything to have you here, no matter how much damage the cancer had caused.
Yesterday, I ran around the city and met up with Katherine downtown at a photo shoot that she was finishing up. I got a tour of the studio and all the behind the scenes things that go on. We walked around the neighborhood and ended up grabbing a bite to eat nearby. It was there that we had a total powerhouse/pow wow/ let’s FUCK cancer up, meeting. I told her all the ideas I have swarming around in my head. She told me every single one of them was achievable and I was just the person to get things done, the right way. I am dreaming really, really, big RO. I am thinking about doing things that nobody has done in the name of childhood cancer and I know each one of these things I set out to do, is going to happen. The face of this disease is going to change in a big way all due to you and all the love and support you have behind you. I thanked Katherine for believing in me so much and for all she has done and is doing for us as she is our biggest cheerleader who truly knows how to get shit done. And she does this all out of the kindness of her huge heart that she has. She does this without asking of anything in return except to stand by my side while holding my hand and screaming, “FUCK YOU CANCER!!!!!!!!” right next to me. She is so beautiful in every single way a human being can be beautiful, x’s 1ooo. I am so thankful to her for opening her heart and her world to us. It’s something beyond this world.
After I got home from my afternoon with Katherine, I set out for a long dark run. I ended up running by The Ronald McDonald House and I stopped and peaked inside, just begging to see you. I couldn’t find you, so I left there and headed to Sloan Kettering instead. I got to the doors of the hospital and stopped and stared inside. I told you how sorry I was. I sucked in a deep breath and let out my tears. I didn’t go in and blow anyone up tonight, but I wanted to. I went to the Starbucks nearby instead and loaded up a gift card and told the cashier to use it on everyone who ordered a coffee, until it ran out. She looked shocked. I wasn’t planning on telling her why I was doing this because sometimes it’s just nice to do things in an anonymous way. I wasn’t expecting her to ask but she looked at me and said, “May I ask why you are doing this?” She caught me off guard. I could feel the tears start to form but I somehow managed to get out the words it was for my son, Ronan, who passed away from childhood cancer. I showed her your picture. After that, I ran all the way home feeling a mixture of sadness and strength that carried me the entire way back through the dark, freezing streets of NYC. Invincible, Ro.
I have so much more to tell you, baby doll. But I’m now on a train to Philly. I’m going to see Dr. Mosse at CHOP. I need your strength more than ever as today is going to be hard. The last time I looked that woman in the eyes was when she was telling me how sorry she was and how the medical world, had failed us. I now know that there are so many more things to for blame for killing you, then the medical community alone. I’m going to fix this. I’m going to change this. You will not die in vain. You will never be a fucking statistic.
I love you to the moon and back. I miss you so much. Thank you, Ronan for filling my life with the most beautiful people possible. Thank you for all the gifts you are leaving everywhere. I hope you are safe. I love you so very much.

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xoxo

Sink or Swim, Baby. What’s it gonna be??

Hi Ro baby. It’s funny how much I look forward to this time with you at night. After the house is quiet. I think of this as my Ro time. The time I get to spend with you, taking care of you now. It’s so precious and dear to me. After the days which are usually pretty busy, this is my way to unwind with you and I treasure every second of it. Thanks for inspiring me so much that I always feel like I have so much to say to you. I am lucky in that regard.

I’m trying to remember the past couple of days. I still have a hard time remembering the things that we have done. Sunday flew by. I honestly cannot remember what we did. Today I dropped your brothers off at school. I left Macy here so she could get some work done. I ran some errands and got caught up on some things. I came home later in the afternoon and picked up Macy. We went to grab your brothers from school. We took them to eat. We wore fake mustaches. It was a sad day, but I tried my best to make it light and happy for the sake of your brothers. I didn’t want Macy to leave. I was sad about it all day. We took your brothers over to Katie’s to say Hi and so Macy could say goodbye to her. We came home and I did all the normal things that normal moms do. I made dinner. I put away laundry. I did dishes. I helped your brothers with their homework. I faked the mommy role very well today. Gold Star for me!

Quinny and I took Macy to the airport tonight. Everyone was sad to see her go. Even your Daddy. I’m telling you, she fits in so well with our family….. it kills me that you are not here with us to be a part of the Macy Magic anymore. She hugged Quinny goodbye as the tears poured down her cheeks. It was my turn next. I just held her, we both cried and said we loved each other. As soon as I got back in the car, Quinn asked when Macy could come back. I told him I hoped soon, but if not we would go and see her. I am not going to let so much time pass between seeing her again. Macy is healing for all of us. Macy is our sunshine through all of this. She makes the darkest days, sunny and bright. But the good thing about Macy is…. if the days need to be dark, she’s o.k. with that too. If the days are dark, she is the little ray of sunshine peeking out behind the clouds. I appreciate that so much. Love you Macy Wood in Da Hood. Thank you for everything.

So Ro, now what? Back to this life. Back to trying to figure things out. I’m trying to make sense of so many things right now. I feel confused and sad. I had a long talk with Dr. Jo yesterday about some things that are going on. She is one of the few people I trust anymore. I’ve had so much crap going on that I actually sent her a text that said something like, ” You would tell me if I were crazy, right?? Everyone around me is making me think I am losing my mind.” She called me. We talked for a good 45 minutes. She told me that I was indeed not even close to crazy. But to the outside world, the normal world may think that I am, because they don’t get it. They may think that they do, but if they haven’t lost a child, they cannot even come close to understanding. But it’s been 6 months Ro. The whispers around me are saying, “Shouldn’t she be getting better by now?” As if there is a time frame on how much time should pass after you lose a child and then it’s time to “get better,” and “get happy” and “choose the right path!” And Grief can certainly make a person feel like they are crazy. I hate that I second guessed myself. I hate that for those few minutes, I felt like I actually might be crazy. I hate that I didn’t trust myself because of all the stupid noise around me. I don’t like noise. I know Dr. Jo and I know the things she is telling me, are not because they are the things she thinks I want or need to hear. She will always be truthful and honest with me. If she thought I were crazy, she would tell me. The thing about Dr. Jo is, she would tell me from an honest place and I would listen to her. She would tell me if I were crazy and she would embrace my crazy. She wouldn’t ever judge me. She wouldn’t ever tell me what I am doing is right or wrong. She would allow me to do this the way I felt was right, without being too overbearing or too opinionated. Or too pushy. You know how well I do with judgmental and pushy people. I don’t. I don’t and I won’t tolerate it. I’ll shut down. I’ll push away. I know who I am, Ronan. Faults and all because I do have many. I know who you are. I know what you expect of me.

I don’t know much about this life now except it is really, really, hard. Hard in a way, that I never knew life could be. Because the real world does not teach you about things like losing a child so therefor, you have to navigate this the best way you can…. without any sort of floatation device or paddle. Sink or swim, baby. Most of the time I feel like I’m sinking but then I remember the reasons why I need to try to swim. Why no matter how many people try to drown me….Inferno Fuckwad Bob being at the top of that list…… the reasons that I will continue to fight my way to the top of the water so that I can reach the surface and breathe again. Because I’m a fighter the same way you are. Because I started this blog and I’m not going to change a thing about it. I’m not going to stop writing it. I’m not going to be worried if it offends people or turns certain people off to supporting your Foundation. I’m not going to stop being me. Sad, happy, stupid, immature, angry, silly, crazy, goofy, honest, raw, scared, brave, and truthful. This is me. This is you. This is our world now. This is all we’ve got together and I’m not selling out, for anyone. I know who I need behind me. The one person that matters the most. Your Daddy. He is behind me. He supports this craziness. His opinion is the only one that matters to me. I know where we stand on this. It’s together. For now. That may change one day. If that time comes, I will sit down and listen. But now, this is the way it is. I’m not conforming. I’m not sugar-coating. I’m not going to stop being true to myself and who I am. I’ve been this way, from the beginning. It’s nothing new. It’s not as if I’ve pulled a 180 here and all of a sudden, I’m screaming from the rooftops for Cancer to Fuck OFF!!! instead of “Gosh darn you Cancer! Thanks for killing my son!” I’m not going to ever stop being true to you and the way you lived your life. I started this my way and that is how I intend on keeping it. I’m not going to let a bunch of men in black suits scare me off. I’m not conforming. I’m not here to fit in. I’m here to be me. Love me or leave me. You died, Ronan. But you still live in my heart, mind, body, and soul. You are my heart which is what I’m following here because it makes me feel like I am alive, for as much as I feel like I am dead. I don’t care what the outcome of all of this madness ends up being as long as I know I remained true to myself and what I believed in. I’m not living a life any other way. I’ve learned in a very cruel way, how short life really is. I’m going to live a life that I am proud of and if that is a disappointment to others, than so be it. I think to live a life any other way, is a very sad, sad life indeed. I think to expect anything else from a person who has just lost their baby, is just mean. There should be no expectations, no disappointments, no judgements. The only thing that there should be is unconditional love. And acceptance. Nothing else. Nothing more. It’s so simple, why make it complex?

So Ro. That’s it for tonight. Your daddy is having a really hard time right now too. 6 months of being without you is so much harder than the first month of all of this. That’s one of the many dirty little secrets nobody tells you about losing a child. It gets worse, as time goes on. Your daddy is doing the same thing I am now. He is looking for you. He thinks you are still here. The shock is wearing off for him too. The emotional anesthesia is fading away and it is pure and utter torture. It at times, can very well make you feel as if you are going insane. I think I miss you more today, than I ever have. I love you baby doll. I love you to the moon and back. I miss you so much. I hope you are safe. I’m so very sorry I couldn’t save you. I hope you know how hard I tried. I hope you forgive me. G’nite Ro baby. Sweet dreams.

And P.S. !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!FUCK YOU CANCER!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

xoxo