Without a doubt, the MISS Foundation saved my life

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I just wish I wouldn’t have had to find them by sitting in my bed in the middle of the day, sobbing, and thinking to myself, “If I don’t find someone to help me, I will not survive this. I then turned on my computer and Googled, “What to do if your child has died in Arizona.” Somehow, that got me to the MISS Foundations page. I thank Ronan for Dr. Jo, every single day.

 

http://drjoanne.blogspot.com/2013/05/as-we-near-mothers-day.html

There Are 2 Things in Life I Will Never Say No To. Anything That Has To Do With You and New York City.

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Ronan. I know I’ve been quiet. I know you all worry when I am quiet, but I promise I am o.k. O.k…. I’ll admit it. I did see my life flash before my very eyes a couple of days ago when I found myself in bed, on my 6th Cadbury Cream Egg, and watching “The Kardashians.” I had a moment of sheer panic wash over me as I thought to myself, “Who am I?? In bed? The Kardashians?! OMG. I need an intervention.” I felt myself slipping into a deep depression that I hadn’t felt in a while. After the whole White House petition, I knew I was due for a breakdown. I had spent so much time working on it, losing sleep over it, and mostly obsessing over it… I knew I was going to crack. Then, the very itty bitty baby contractions started. OUCH!!!! Ummmm… ouch!!! It’s much too early for those. I was put under strict orders to slow things down and to stop with the stress. That’s what landed me in bed and somehow sucked me into the land of reality television which is so far from reality that it makes me want to barf. I sat in my bed for a couple of days and pondered life and death. The whole, what am I doing thing? Where is Ronan? And how in the world am I living without him? I did my best all week to do the normal mom things that I have to do to run our house. A Target trip that seemed so overwhelming to me that I had to sit in the parking lot and sob for a good 20 minutes before I could even get into the store to buy the one item I needed. Only my Dr. Bronner Magic Soap that I am obsessed with could have gotten me into that store and I was totally out, otherwise I would have aborted mission. I’ve been trying all week to get over to PCH to grab your Captain Rex costume that we used to decorate the Christmas Tree. I have been mentally visualizing myself walking into that hospital but then having to walk out with my dead child’s costume. In my mind, I’ve walked out with your costume at least 50 times. Through my flood of tears I sent your Sparkly a text, “Can you please get Ronan’s costume for me. I have tried to get it about 3 times, but all I can do is sit in the parking lot and cry.” “Of course I can. Consider it done.” he said. You’d think with all the shit I do, that walking into a hospital to get your costume would be easy, right? Well, that’s the world I live in, Ronan. To me, the littlest things can sometimes seem like the most difficult. I would rather jump out of an airplane, 10 times then have to walk out of PCH with your Captain Rex costume that you will never wear again. Walking in with it was easy. It’s the walking out with it that I just cannot bring myself to do.

I am really glad I did not die by the death of too many Cadbury Cream Eggs and The Kardashians. I am really glad about that because of days like today that seem to just magically fall into place when I need a big slap in the face of why what I am doing, is so important. I had a little secret very important meeting today. Your Fairy RoMo just happened to be in town for this meeting. One that I so badly wanted her at and one that she so badly wanted to be at but did not think she could come for due to her crazy work schedule. The stars magically aligned for the worst reasons possible so your Fairy RoMo has been in AZ for a little over a week now. When I remembered this meeting was taking place, I of course told your Fairy RoMo about it and she was more than happy to go with me. Our super secret meeting required us leaving my house at the butt crack of dawn this morning and driving half way to L.A. a.k.a The Wigwam Resort in Litchfield Park, AZ. I was excited about this meeting but as always I go in not expecting a thing. I have taught myself it is better to go into something not expecting a thing that way less disappointments occur.

Can I just say today, I am so glad I had your Fairy RoMo there with me not only as my dear friend, but as a witness to the amazingness that occurred. Because if I would have left that meeting today and had to report back to your daddy/board members about the conversation that was had, they would have all told me to get out of my fantasy world and back to reality. We both left our breakfast/meeting, speechless to say the least. It all started with the meeting of a lady who is such a badass in the cancer world, that Darth Vader would be scared of her. It all started with her looking  me in the eyes and saying, “What do you want? Tell me your dream for all of this.” So I blabbed all about our Neuroblastoma Research and Care Center. I did it without crying and drowning in my tears. I talked about it in a way that I made her understand why the care is just as important as the research. She grabbed my hand and said, “I promise you, we are going to make your dream, a reality. Now that I’ve met you, you’re in.” It was like I was let into the most exclusive club that ever existed. And in the cancer world, with this organization, that is absolutely the case. Follow up plans were made. It’s taken me all day to wrap my head around what this could mean. I feel like I haven’t been able to catch my breath all day and it’s not just from Poppy suffocating me. Let the evil secret cancer plans to take over the world, begin. Mawahahahahaha….

I had Dr. JoRo over to our house today. We very much needed a pow wow session. It’s been much too long. We talked a lot about Poppy, Inferno Fuckwad Bob, and of course you. Just as I was saying to her, “How am I going to survive these next two months?” A text popped up on my phone. It was my agent, Nena. “Hey, can you meet me in New York next week to meet with some publishing houses?” I just smiled at Dr. JoRo. “Here’s how I’m going to get through the next two months. By taking a little time out to go to New York.” What perfect timing. Of course I’m cutting it close with not being able to fly due to being so far along in my pregnancy, but I’m cutting it just close enough that I will make it. You know I will always say yes to New York. Especially when it involves you, which it always does.

This is all for tonight, little man. I’m mentally tapped out. G’nite. I miss you. I love you. I hope you are safe. I promise to make you proud.

xoxo

The election is over! Now, we can focus on turning the White House Gold for September and save some kids!

Ronan. I am having a hard time breathing. I can’t tell if it’s grief that is trying to suffocate me or Poppy. Either way it is making this life without you, harder than normal. I didn’t know that was possible. I spent the weekend at home, doing normal things with your daddy and brothers. The kinds of things we would have been doing, if you were still here. The things I have the hardest time doing now in life. Those simple easy things in life that I used to love so much but now I feel as doing them is harder than running a marathon. Without training. Liam was still a little under the weather. I tended to him and we went to bed pretty early on Saturday. It’s all I can do to make it to 9:00 p.m. without passing out. This growing a baby business is a lot of work. One that I am not a huge fan of. I never have been. The outcome is of course so worth it, but I have never been one of those women who enjoys pregnancy. It feels like a prison. I am trying to stay positive, but it’s hard to all of a sudden feel like you are just stuck in quicksand and there is nothing you can do to get out of it. Before I was pregnant, I had so many physical outlets that kept me sane. I could blow off steam so well with an easy breezy 8 mile run. Now I am panting at climbing a flight of stairs. So mentally and physically I am having a hard time getting out all of my grief in the ways in which I would before which may be another reason for my feeling of constant suffocation. I’ve been throwing myself into working on things for your foundation. That is saving my sanity a little bit I suppose. It is saving the shred of sanity that I have left.

Last night we had tickets to see my boyfriend, Eddie Vedder in concert. One of our little lovies, somehow got 6 front row seats where I got to sit about 10 feet away from Eddie as he gazed into my eyes and sang to me the entire night. That might be exaggerating a little bit but an over active imagination is healthy. He played our favorites. I was not the only one with tears streaming down my face as he sang our song, “Just Breathe.” I think everyone that was there with us, had them streaming down their cheeks too. I tried to fight it, but eventually the lump in my throat became too big and the tears came next. Buckets of them. I wiped them away and pictured you running up on the stage as Eddie sang his song, only the way he can. One that makes you get completely lost in another world. I, as always, was lost in the little world of yours. It’s my favorite place to be. I know Eddie had some Ronan ESP going on as next to last song was the one and only Neil Young’s, “Keep on Rocking in the Free World.” You’re telling me that was a coincidence? I know it was not. It was you working your magic in the ways that you always do. My entire body ached for you and I had flashbacks to the way you used to dance to that song. Thanks, Eddie V for playing it just for Ro last night. I know you did that for him. I could not have thought of a better way to end the night, then with that.

Today, I woke up bright and early. For going to bed so late last night, I woke up before the sun came up. I tossed and turned for about an hour before finally getting up. I had nothing of real importance to do today, but I was restless anyway. I ran some errands and went to the office. I worked through much of the afternoon on some foundation things and had about a half an hour phone interview. This one was hard for some reason. I forget what question it was exactly that I was trying to answer, but I know I had to stop myself and apologize for the sobbing that was taking place on my end of the phone. I think I remember telling the lady on the other end of the phone something about my last words to you and how I told you how sorry I was over and over again. She asked me what I was sorry about. I told her how I promised you I would save you and get you better and the fact that I didn’t or couldn’t will make me sorry for  the rest of my life. She asked if I thought you knew that you were dying. I think about that question a lot. I told her that I did not think that you did. How some of your last words to me were, “I don’t want anymore sleepy medicine.” I told her how you had to be put under anesthesia a lot and how I think you thought you were just going to sleep, but you would wake up again. I think about this so much in my head, all the time. I wonder if I should have told you that you were going to sleep forever. I didn’t. I don’t know if I should have or not. I’m so sorry you are sleeping forever and won’t ever wake up. I will forever have post traumatic stress over this. No mama should have to kiss her babies lips one last time and to be expected to live a life without kissing them again. Being a parent to a dead child is the hardest job in the world. Much harder than being the parent to kids who are alive and well. Being the parent to a dead child is the hardest kind of parent to be. I don’t think anybody in the outside world realizes this. It’s a truth I never thought I would know. It’s a truth that I will forever wish I didn’t know.

I had a board meeting last night at our new office. All of the girls were so excited. It was so nice to be able to have a space to go, that was not our own house. Our board meeting was long. A good 4 hours last night but we got a lot done as we always do. I woke up this morning with a big to do list. I got a lot of it done but by noon I knew I had reached my limit for the day. The little sleep I got last night combined with a raging headache led me to driving home and crawling in bed for a few hours. I took about a half an hour power nap but then had to get up to get some things done. Your daddy picked up your brothers from school and we all went out to grab a bite to eat as the cooking was just not happening tonight. I find myself sitting back and listening to your daddy a lot and the way he talks to your brothers and explains so much about the world to them. Once again, that bittersweet word will be used again because it is so bittersweet to hear the things they are learning and knowing you should be here, learning them, too. Tonight at dinner your daddy talked about everything from Shakespeare to the election. I watched them soak it all up like little sponges. They are so lucky to have a daddy like yours. Tonight, sitting at one of our favorite restaurants, I felt pretty lucky. Not every child grows up with a daddy like yours. So I felt lucky for that. Your brothers are amazing little boys and I know a big part of this is due to the strong male figure they have in their life. They are happy, loved, and have been through the worst, only to watch as we have survived it all. I feel like a bit of their self-confidence and security is coming back. I know this could have shaped them either direction. I am thankful that our situation has only seemed to make them stronger and have a love for our family  that is so strong because they understand how precious it is. Such hard lessons for young boys but I know this will make them stronger men. Of course you know I would rather have you here and not have to have them “learn,” any of this. I am just doing my best to be grateful for the things I have that are tangible to me, like your brothers brave little hearts.

I gotta go little man. Lots to do, always for you. I miss you. I love you. I hope you are safe. Sweet dreams.

xoxo

P.S. I am not going to get into politics on here but I am so glad the election is over. I took Poppy to vote yesterday and we as a family had such fun last night watching the polls. It was a good night. I am so glad we can now focus on turning that White House Gold for September. I have faith that our President will do the right thing and make this happen. There are too many babes dying. A change has to come. I am thankful for President Obama and the Creating Hope Act. It’s time to take this to the next level and with all of you on our side, I know this can happen! Love you all, so much!

My dream doesn’t scare me because my dream is you.

I have a dream. A really, really, really, big dream. I’ve been sitting on this dream for a while, trying to figure out when the right time to announce it would be. I’ve been talking to a handful of people about this dream, but for the most part it’s been kept pretty hush-hush. This is one of the reasons, I’ve been so busy Ronan. I’ve been meeting with so many people for months now. Taking so many trips, having so many meetings, phone calls, and lunches. I’ve been chasing this dream of mine, trying to figure out how I can make it a reality. It all came one night, so clearly, out of the blue. Your daddy and I had been to dinner with some friends of ours. It was a magical dinner where we talked a lot about you and how things are just not changing for this disease. It was a dinner filled with, we know we can change things, we feel the power Ronan has to change this, we know our little boy would want us to do something really huge and big, to impact this world in such a big way. We both left the dinner knowing what needed to be done.

The car ride was quiet on the way home. I was trying to wrap my head around the epiphany that I had just had. I was in our bedroom and your daddy looked at me and said, “Let’s build a World Class Neuroblastoma Research/Care Center.” I couldn’t believe my ears. He took the words right out of my mouth. It was one of those moments where you know with every bone in your body, that you are married to your absolute soul mate in life. I teared up and said, “Let’s build World class Neuroblastoma Research/Care Center.” I had no clue how we were going to do it, but I knew that this was our new secret mission and we were going to figure out how to make this happen.

We started talking about ideas. It needs this, this, and this. Who can help us? I reached out to a small group of people. I was fully prepared for the, “This idea is too crazy and big… what in the world are you doing?” I got a lot of those, but they also came with sides of, “If anyone can do this, it’s you and Ronan.” I have been working non-stop on this for a good 8-months now, trying to put all the pieces together like a puzzle. They have slowly been coming together. I have a list. A very big list. I have a vision and a dream of how this center will look. To me, it is so beautiful and safe. I want to create a safe community for these families, where they don’t feel as if they are just another number. Where they know that they matter and they know they have the best doctors/child-life specialist/volunteers/nurses taking care of them. Where they know they are NOT alone. Where they have someone to hold their hand, all the way through this, even if the worst possible outcome happens and a child dies. They will NOT be thrown out into the street like garbage, never to be checked on again. I have a crazy list of crazy things that will be necessities for the care center part of this. A yoga studio! A go beat the shit out of a punching bag area! A quiet area. A movie theatre! A chapel. A theater where kids can put on plays and perform! An Art area! A kick ass play area! A garden! A music room! My list could go on and on. I WILL give these kids the childhood they are being robbed of. I will give them the life they deserve to live, but are having to live it while fighting cancer. I know I can make this world better Ronan. I know I can. I know you can, too.

This is all I have been doing/thinking about. I presented it to my board a few months ago. I think saw their heads start to spin. I quietly told them that I wanted this to be our new mission and although I didn’t know how we were going to get it done, we were going to get it done. I was told by a Master Yoda of mine, to wait to throw this out into the world. How the timing had to be just right. I had dinner with my Master Yoda a couple of weekends ago. I looked at him after our dinner and said, “How will I know when the time is right, to put this out there?” He just looked at me and said, “Maya, you will know.” I left that dinner telling myself to just trust in myself, you, this universe and when the time was right, I would know.

The time is right now. I know this because of the ways the stars have aligned and the way divine intervention is taking place. I know this is all because of you. I am ready to put this out there. I know what it is, we are going to do. I am going to create the best world possible for a child and a family diagnosed with Neuroblastoma, to be taken care of. I can take the pain of losing you, Ronan, and turn it into something beautiful. For a long time, I didn’t think I was going to be able to do this. For a long time, I was so scared this pain was going to destroy me and everything I had. It was only after the idea of this center came to me, that I figured out how I could survive this. It is by being able to help others in such a way that only a mother who has experienced such a devastating loss, can do so. I can do this in a way that is so different from others. I can take all of my pain and magically spin it into beauty because of the love that I know from you. I made you a big promise when you died. You left me here, knowing I was not going to do something small. I have always known the things that I do for you, are going be huge. I have always known you would lead me to where it is I needed to go. I have always trusted in you to map out this path for me. This is what we were meant to do. This is what we are going to do. This dream doesn’t even scare me, because I know I have you behind me and you won’t let me fail.

I know how hard this is going to be, but it cannot possibly be as hard as living my life without you. If I can do that, I can do anything.

I sent out an email asking my board if they were o.k. with me announcing our new little mission. Their responses left me with tears pouring down my cheeks. One of my board members responded back with, “Just Do It!,” (taken from Nike). Then she wrote back and said, “Or as my dad says, JFDI!” (just fucking do it!) I was crying and laughing all at the same time. I LOVE THEM ALL SO MUCH! I love that they are so behind this! It means everything to me. I had Tricia tell me not long ago that she hadn’t seen me so excited about something, in such a very long time, as I was about this. She told me she knew this was going to happen just due to seeing my passion, excitement, and fire behind it. I loved hearing that from her. I am glad people can still see that in me. It takes a lot to bring it out.

You know those days I disappear, and I don’t write? It’s not because I have dug myself into a hole and I am hiding. It’s because in between grieving, being a wife, mama, trying to be a friend again, trying to find myself a little bit again, I’ve been working on this with everything I have. This is what I want to do for you. This is now, my ultimate goal, besides a cure for the thing that killed you and took you away from me. I will fight until I die, with everything I have, for the rest of my life for this and for you and the other kids who deserve better. I am not going to slink away or disappear. This is my life mission. This is what I was meant to do. I will fix this, Ronan. I promise.

I love you baby doll. I miss you, I love you, I hope you are safe. Thank you for guiding me in everything I do.

xoxo

P.S. Dear loviest of lovelies,

I hope you know how much I appreciate all your love and support. I hope you know how much I appreciate you sticking by me through all of this because you knew with all of your hearts Ronan was going to do something amazing. This to me seems pretty amazing. This is why I am so thankful, for every dollar you have sent our way. Every penny counts. Especially now. You humble me. You make me want to shoot for the stars. You give me strength and keep me going, on the darkest of days. Thank you so much for loving me in a way that I never knew strangers could love someone. Thank you for loving my little boy so much that it makes you want to be better people. I love that so much. I know this is a big job, but I also know my Master Yoda was right. If anyone can do this, it’s us. I also know that I could not do any of this without all of you. I will forever be grateful for you all. I love you.

Also, please watch Stand Up 2 Cancer tomorrow night. It’s the one night of the year, where we can all stand up together. They are a great organization, doing amazing things.Things have to change and it’s a very powerful show with a very special message for anyone who has been touched by cancer. Thank you.

“Mom…how did that baby get in your belly?”

Ronan. Hi. I love you.

I’ve still been really tired, but really busy. I’ve tried to take it easy. I had dinner last night with Tricia and Marisa. My two oldest friends from my oldest most perfect life that no longer exist. It has been hard to be around them since going through all of this. Hard because I know they loved you in a way that a lot of people didn’t just because of the fact that they knew you so well. It’s hard to see that raw pain in their eyes that looks a lot like my own. They both know about this baby. Marisa was one of the first people I called to tell. She is my go to gal on all things related to pregnancy. She was ecstatic over the phone, but it was even better to see her in person. She gave me a long hard hug with tears in her eyes. She gave me the listen here talk which consisted of things like, “Now, I’m here to tell you, we need to be a part of this baby. You can’t push us away anymore. I am here to say, I will stalk you at your doctor appointments, your house, the hospital…. you have to let us be a part of this. We all need this. This is such a good, positive thing for all of us. Our friendship needs this. We are not going anywhere. We are taking over.” I giggled, got teary eyed and quietly listened to my friend do what she does best which is be a jewish mother hen/best friend. I told her I knew. That of course I would let them be a part of this. I miss them so much. I told Marisa I know she has stepped back and given me my space, but I never thought she went away. Believe me. I know what it feels like to have people go away, Ro. A lot of people that used to be in my life, have. I don’t know if it’s due to the uncomfortableness  of this. Due to not knowing what to do/say/or how to act. Due to me pushing. Or a combo of all things. It doesn’t really matter. All that matters is I know who is here for the long haul. The good the bad and the worst. I’ve always known our Little M was in this for everything, no matter what. I have missed my friend so much. It was a 3 hour dinner that was very much needed. I could have stayed tucked in our little table all night long with the two of them. It was a really, really good dinner. They talk about you so much, too. They are not afraid to speak your name. I so need that. I means everything to me.

Your Liam asked me today how a baby got inside my stomach. Ummm…… this was is not a story I am ready to explain to my 9-year-old. I just reacted with the first thing that came to my mind which was, “A stork.” Liam looked at me and goes, “What’s that?” Crap. Kids don’t know about storks these days. I said, “It’s a bird that leaves a baby on the porch of the house.” Liam rolled his eyes at me and goes, “That’s not true.” “You’re right, that’s not true,” I said. I then responded with, “I asked Ronan for a baby. I told him I thought it would be really nice for all of us if we could have a baby in our family.” Shit. I hope this works I thought to myself in my head. Liam just looked at me and goes, “O.k. That was really nice of him to do.” YES! I smiled at your brother. I couldn’t believe that answer worked. Saved by your Romazingness once again.

Holy hell. I am so glad this secret is out. I have hated keeping this in. It’s a breath of fresh air to be able to talk about things on here! I was so nervous to post for some reason. You all are the SWEETEST. Your kind words have truly made my night. Thanks for all the support and love, with everything. I can’t believe I have not gotten any nasty comments yet. That NEVER happens! It’s nice to know that the kind-hearted people out weigh the mean/sad people by far. You all are truly the best. Oh, and thank you to the man that came up to me today at Chelsea’s Kitchen. He was someone I didn’t know, but said he recognized me and wanted to tell me how this blog has changed his life and made him such a better dad. I never get dad’s that come up to me! It’s always moms. It meant so much to me and truly made my day. Thank you Chelsea’s Kitchens stranger:)

That was yesterday, Ro baby. Today, is here and I am beat. I woke up today, so tired. I didn’t sleep well last night. Too many things swirling through my head. I had another golf lesson today. My giant boobs are becoming a handicap and interfering with my game. Just when I was getting really good…. my professional golfing dreams might have to be put on hold. My sweet instructor tried to convince me otherwise though. We talked a lot about you today and this new baby. She said she was sick to learn of all I had been through. I told her I knew, that everybody was sick over the loss of you. My lesson was great but my energy was zapped after I left there. This baby does not like the heat. I came home to try to rest. My phone kept buzzing with text messages and emails. I had too much to do to slow down for the afternoon so I sucked it up and got a lot of things done. I was on my way over to see Katie when I pulled over to stop at A.J.’s to get us some drinks. I got a text message from Robyn, Ezra’s mom who has now become someone that I treasure so much, that knowing she is in pain, the same way that I am, destroys me. Ezra’s fourth birthday is this Friday. She should be planning it not thinking about what she is going to do, on his birthday to survive the day. She should be playing with her twin 2 and a half years olds, not just one of them. We both decided that life should not go on after this. I told her this life is a death sentence, where we are forced to stay alive. I went to go into the store, reached for my wallet and pulled out a bag of your ashes instead. This caused me to go into complete hysteria and have a total breakdown in my car where I couldn’t breathe or stop screaming and crying through my tears. I forced myself to go into A.J.s. I didn’t have my sunglasses to hide my blood-shot eyes but I didn’t care. Iced Tea’s or bust. I made it out alive, but I went in armed with my FUCK YOU stamp that my friend from Australia, Ali, sent me. I was going to stamp it on anybody that got the way of a grieving mom who should have been carrying a 5 year-old on her hip, not his ashes in her purse.

I spent the rest of the day with Katie and a got a surprise visit from Mandy Bee who just happened to stop by The Garage while I was there. We caught up and made some plans for a little event we are doing on September 20th. I’ll talk about that later as I am wiped out tonight from this day. G’nite baby doll. Sweet dreams. I miss you. I love you. I hope you are safe. Have a good party with Ezra on Friday. I know you two will do something extra spicy. I miss you so much.

xoxo

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 didn’t kill the intern. I only made her black out and throw up.

Ronan. Shitballs. I am beat. I spent yesterday with Quinn, hanging out at Charisma’s. We went for a hike. We lounged around. We played basketball and some other game that involved Charisma kicking my ass. I’m not used to losing, but if I had to lose to anyone, I am glad it was her. She kicks ass and is such a good friend. It was nice to spend time with her and have a break from everything. We were up in her room and I was watching her get ready as I sat on the floor. She came and sat with me, looked at me and said, “How are you so calm? So serene? You’ve been like this since the day I met you. You just have this peacefulness about you.” I told her I didn’t know. That I think to myself if I naturally wasn’t this way, I don’t know how I would survive something like this. I then said to her, “Do you see why my anger has to come out in my writing? Because I don’t get it out, any other way. My writing is how I release my anger.” She said she understood. How she doesn’t know how I do what I do. I looked up at her. “Can you believe this fucking happened to me? To him? To us?” “No,” she said. “It’s unfathomable to me.” Later that morning, I was sitting on her bedroom floor again. She yelled to me, “I have something for you. I just thought of it and I want to give it to you.” She went to her closet and came back with a ring. It’s dark, sparkly, and beautiful. “I want you to have this. To wear it and think of me, every time you do. So you know I’m always with you.” I tried not to tear up. I slipped it on. Rings never fit me. This one fit perfectly. “I love it. Thank you. I will wear it and think of you. You give me strength. I will look at it when I am sad, and try to be strong.” My friend. I am so lucky to have her. She does give me strength. She is a fighter, just like I am. I feel stronger when I am with her. She has this way about her that makes me feel like I am capable, strong, and even though you are gone, you are still always with me. She is good at reminding me of that. I am thankful for her and the lessons she teaches me. “To thine own self be true.” Right, my friend? This is so fitting for you. You are one of the truest people I have ever known. I love you.

Quinn and I arrived home last night, around 11. I feel into a fast, long sleep. I dreamed about all things sweet for once. All things sweet, except you. It is o.k. that you are not visiting me in as your own self. I know it is you, visiting me through your lovie. If that is the best you can do as of now, I will take it. I woke up today, on a mission to get shit done. I did. I ran to Starbucks for my breakfast of coffee and nothing else. I had a mini pow wow with one of my board members to catch her up to speed on some things and vise versa. I unpacked and did laundry. I met up with Rissy Roo to go over her list of intern things to do which mainly just consisted of getting our toes painted all purple and sparkly. She saw through my twitter that I was going inferno hiking later. She told me she wanted to come. YAY! I was excited to have her. We picked a time to meet up and go. She came over later in the day and we left for our little hike of the day. I think it was a little over 100 today, but I didn’t notice on our hike of all things inferno and fucking insane. I didn’t notice until Rissy was about half way to the top of the mountain and I realized I had been blabbing my face off. “Shit, Rissy. Are you o.k.?” She looked like she was about to pass out. “Yeah, I’m fine. I just need some water,” she panted. “O.k. let me know if you need to stop again.” We continued up farther. Me: Blah, blah, blah, blah, blah. Up the mountain I go. Is it hot today? I notice nothing. Is it hard today, this mountain climbing of mine? No. Nothing is hard anymore because I know what hard is like. I live in a world without you. That is hard. Nothing else, that I do, even compares to that. I look back. Shit! Rissy is bent over, trying to breathe. “Rissy! OMG. Are you o.k. Crap! I’m a bad boss! I should not have taken you inferno hiking!” I am scared now. “What if you have heat stroke! Let’s get you down to this part and I will turn around, go back up the mountain, down the other side to my car and come and pick you up!” “O.k.” she said. She got down, safely. I texted Rita who was flipping out. “Our intern is blacking out! You made her puke!” SSSSSHHHHIIITTTT!!! I haul ass down the mountain as fast as I can, to rescue  Rissy. I got to her about 20 minutes later. She looked much better. “I threw up. Want a apple carmel sucker?” she said. “I feel awful! But yes, a apple carmel sucker will make everything better. Are you alright?” I asked. She was. Thank Ro for that. I didn’t kill my little intern. My board would have NEVER forgiven me for that one! Our itty bitty is PRICELESS to us!! She was a good sport about the whole thing, but I don’t think she will be going back into the inferno, anytime soon. I am just truly glad that she is o.k.!

My Rissy is getting ready to go on her mission trip, to Wales in just about a week with her Young Life group. She blows my mind. She is 20 years old and is already making such a difference in this world. I know what I was doing at 20 and it was not going on mission trips and working my butt off for a children’s cancer foundation, for free. Her mission team still needs about 9,000 dollars. I know that I have my issues/anger with many things in this life, but I will ALWAYS support Rissy’s beliefs and what it is she is doing, because it is her heart and soul that I love. Her heart and soul that I don’t judge. Our spiritual beliefs/differences are something I embrace, as I know we are both opened minded enough to listen and learn from each other. I have taken the time to get to know this sweet little soul and I am so proud of her and so thankful that I can support her in whatever way she needs support. I have heard through the grapevine that due to some of my “anger issues,” that some people cannot support me. To each their own. But if you cannot support me, then maybe you can open back up your hearts and your wallets (hee hee) to support Rissy and her Young Life groups mission trip. I know even the smallest donation would be greatly appreciated by your God, so very much. I plan on making my own donation to help Rissy reach her goal. I know this would make my Ro, very happy.

Here’s the info to help Fund Risssy’s, The best intern ever, mission trip: Checks can be mailed to: Scottsdale Bible Church Marissa Rahm 7601 E. Shea Blvd. Scottsdale, AZ 85260 Please specify that you are donating to the Wales College Group The money being raised will go towards the following: Partnering with Young Life to host a camp for students. Provide labor, including cleaning, clearing tress, maintain “man- made” ponds, build picnic tables/chairs; outreach/evangelism. The link for Young Life is also below. http://www.younglife.org/us Love you, Rissy girl. I will always support you in life, whenever you need it. Unless you become a stripper;) Then it’s game over.

Ro baby. This is all for tonight. I’m wiped from the day. I have so much more to say as the thoughts about you and all of this are never-ending tonight. I’ll save them for a later date. I love you. I miss you. I hope you are safe. Sweet dreams, baby doll. xoxo

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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

A barefoot hike and a spicy little dragon

Ronan. Every single morning I wake up, the first thing I do is miss you. I will never be the mama that wakes up with a fresh set of eyes. My eyes are always sad, mostly bloodshot and my heart is always heavy. Every single morning, I have to make a choice to get out of bed. It’s a choice because a lot of days, I do not want to wake up at all. After a very heavily induced Ambien coma sleep last night (yeah, I totally went there), I woke up this morning saying all kinds of shit in my head. You HAVE to get up today. You HAVE to make 2 decisions today. You HAVE to check 2 things off of your list. You have to start making some decisions about Ronan’s death day/birthday that is approaching. I get up. I make my way to your brothers room the same way I do every morning. I walk past your room. My stomach drops that you are not in there. Your bed is neatly made. I go into Liam and Quinn’s bedroom. I open their blinds. “Good morning, boys! Rise and shine!” I turn on their shower. I text back and forth with Rita. We make some plans for tonight, as a family. YAY! I get to see her little dragon! I pack your brothers lunches and drop them off at school. “Bye boys! Have the best day! Try your hardest! Be nice! Be kind! Help others! But don’t take anyone’s crap! I love you!”

I decide to make a run to Target for a couple of things and one of them includes a couple of little trucks for my little dragon friend of mine. I get so excited about seeing him. I love his little raspy voice, the way he says my name over and over, just to say it, and the way I get to hear him call out to Rita, “Mama,” because that is what he calls her. I am a sucker for that mama word. I am a sucker for the way he sometimes talks about himself in 3rd person. I am a sucker for this little dragon friend of mine who makes me want another baby/child so freaking badly. I would actually just like to take him home, but I don’t his two totally amazeballs parents, would be o.k. this. I’ll just continue to take him in the doses I get him in, which totally makes my day.

It’s while browsing through the toy aisle at Target that I of course, walk past the Star Wars toys. I can’t resist. My heart flip-flops back and forth. New guys! New helmet guys that Ronan did not have, but totally would have wanted. I pick them up. I put them back. I almost walk away. I can’t. I turn around and grab the new guys and throw them in my cart. I’m buying them for Ronan. I don’t care if he is not here to play with them. I run home, look at my get two fucking things done list, I sit down and do them. Good job, you. I look around at our house. It’s so freaking clean. Everything is put away. There is not even laundry to do or windows to clean from your little pudgy, dirty hands smearing stuff everywhere. This is FUCKING BULLSHIT. I throw on my workout clothes. Well, since there is no maybe baby, I guess I can go beat myself up a bit. I drive to our mountain.

I listen to Dr. JoRo’s voice in my head telling me, no headphones… just try to be quiet. To be mindful. I run up our mountain. Except instead of taking our usual route when I get to the top, I turn the corner instead. I slip off my shoes and continue up, down, around, and around the unfamiliar trails. It’s hot. Nobody is around at all. My heaven. Inferno hiking season is almost back. My feet don’t really feel any pain. I run for a long time, barefoot. I stop after about an hour and a half of hiking up, up and up. I find a nice spot, throw my things down, sit down on a big, black rock. I close my eyes for a long time and think about you. I snap a picture to send to Rita. She responds back that the cactus I’m sitting in front of, looks like it flipping off cancer. I laugh. It totally does.

I head back down the mountain, keeping my shoes off for half of the way. I stop to put them on and start to cry. A few ideas trickle into my head about what it is, that I would like to ask people to do for your death day. I’ve decided that’s what I’m calling it. Not your passing day (that sounds too sweet) not your anniversary (i hate that too) I guess I could call it your Fuckiversary. That has a nice ring to it as well. You deathday/fucking bullshit Fuckiversary it is. I know a lot of people will want to do something. I’m creating a little list in my head of what it is, I would like to see done. Up until today, I have not been able to even think about it without getting physically ill and drawing a total blank. It was only today, during my hike of numb pain, that ideas started to spin around. I’ll write about them later, not tonight. I’m tired and I want to be able to let this all come about, naturally, and I don’t feel like I’ve gotten it all figured out yet.

My little hike lasted 3 hours. It was nice to be outside, connecting with nature in a physical way. I get in a funk when I don’t do things like that. I always feel close to you and I tend to feel the closest to you, on that little mountain of ours. I left your bracelets all over the same tree below, like I do every single time I am there. I always wonder who finds them. I always wonder if they will google your name and learn about the most beautiful little boy who ever lived. I hope they do.

I went to your favorite restaurant tonight, Chelsea’s Kitchen, with that little Dragon friend of mine, his parents, your daddy and brothers. I felt like you were there with us. Especially as I watched Little Dragon, jump into the water fountain outside of the restaurant with his shoes, socks and pants on. If you were there, you totally would have done it with him and I would have laughed. I laughed and I almost heard your giggles in the distance. I laughed even harder when that Little Dragon, grabbed someone’s shoe that was just sitting near a rock by the patio (seriously who takes their shoes off, at a restaurant?? if you ask me, they were just begging to be thrown into the water by a very curious 4/maybe 5 year old) and threw it in the fountain/pond. Such a little rebel Ronan move. Your brothers thought it was hilarious. Rita, apologized profusely, but secretly /not so secretly to me, thought it was funny. I looked up at the sky and blew you a kiss. It was a great ending to an almost good day.

I love you to the moon and back my very spicy, little monkey boy. I’m so sorry for all of this. I miss you. I love you. I hope you are safe.

xoxo

Fancy and Karma can go get FUCKED

Ronan. The holidays are over. I’m still standing. I’m may be shaking, but I’m still standing. The room is still spinning, but I’m still standing. I wonder how long until I fall. Hard. I wonder if I’ll be able to get back up. Some days I think yes. Other days, I think no. Today, I thought no. Today, I am just trying to breathe. I did a lot of things today. I went to breakfast with your daddy and brothers. We played football, basketball, and went on a bike ride. I’m exhausted from the normalcy of today. My hands have shaken for 2 days now. Your daddy asked me if I was mad at him. I told him I was not. I was mad at the world. I am. I used to believe in karma, Ronan. You know you always hear, you get back what you put out there. Fuck that. I believed in karma, until it kicked me in the face. Now I’m not sure what I believe in, besides you. Without having you to believe in, I would not be here. That is a FACT.

I spent most of the day, hiding my tears from your daddy and brothers. Your daddy asked me what we had planned for next weekend. I wanted to punch him in the face. I don’t understand how he can possibly ask me such a question. Does he not see that I can hardly get through the day, let alone think about next week? I wanted to scream at him that I was not doing anything, until he brought you home. I didn’t. It took everything I had, not to. I just don’t understand, why you can’t come home. Or why you had to leave home in the first place. I still wonder when you are coming back. I walked around most of the day screaming back at the voices inside of my head and staring at your Urn. We had friends over for dinner except I forget to cook for them. I’ll let them say it was a miscommunication but it was not. The old Maya would have never done such a thing. The old Maya would have given Martha Stewart a run for her money. Tonight, I tried to keep myself composed but I was so shaky it was all I could do not curl up into a ball and hide in the corner. I told Mandy Bee this while we sat on the floor of our laundry room and folded socks. Ahhhh, yes! Come for dinner where I totally space everything but you can sit on my floor and help me fold the piles of laundry that won’t fucking go away! What the hell? Whose world am I living in because it can’t certainly be mine! My old world, the one where you were here, where you are supposed to be, the laundry didn’t stand a chance! I always had that beast under control. Now, it is eating me alive. How are the simplest things, so challenging? Oh wait, I know. It’s because I no longer have your clothes to wash, your stains to remove, your socks to fold, your sheets to clean, your bed, to make. I still carry your socks in my purse though. The one’s that I put on your little feet before you died. The ones that kept your little frozen toes, warm. I carry your little socks with me all the time. I told you I was a good mom. I’m still an awesome mom, to you even though you are dead. TOTAL AWESOMENESS, RO!!!!!!!!!!!!!!!!! fucking bullshit, ro.

Mia’s mom called me tonight. I normally don’t answer the phone anymore, but I was sitting on my bed with Mandy Bee and she called. I didn’t hesitate, picking up as we don’t get to talk often. She was crying. She told me she had just read my last post. I told her I wish she wouldn’t have. I don’t remember what I wrote, but she told me she was really worried about me. I didn’t argue. I told her I was too. Because I am. I listened to her and the way her voice quivered, I listened to her as she begged for someone to help me. I listened to her, as she asked if there was anything that was going to make this easier. I told her no, I didn’t think so. I told her I think I am just expected to live with this pain for the rest of my life. I told her, I didn’t think I was strong enough. I told her that I still can’t believe that I was staring at your ashes on top of my dresser. I told her that nothing is getting easier. I told her a lot of things, I wish I didn’t have too. I wish I wouldn’t have had to listen to her as she cried about Mia, how she may never walk again, but oh wait! The cancer is gone, so they have won! Everything is ponies and rainbows and sparkles galore! Bullshit. Sandra knows this is bullshit too. I know she wouldn’t trade places with me in a heartbeat. I know she was not being insensitive to losing you, Ronan. And all they have been though, is fucking awful and it’s not even close to being over. Mia had her childhood robbed from her but she is still here fighting, even though cancer is trying so hard to take anything she has left. So, going back to the fucking karma thing? This is fucking karma? A little girl like Mia, who was perfectly healthy, deserves to have her entire body destroyed because it was trying to fight the cancer that was trying to kill her? She didn’t do anything, to deserve this! And where does that leave you? Karma for you? You deserved to die because what goes around, comes around? Fuck that. I wish people would actually think of other situations, besides THEMSELVES, when speaking. Mia does not deserve this. You did not deserve this. Charlotte did not deserve this. Haley did not deserve this. Esther did not deserve this. None of these kids, deserve this! I don’t know who the fuck is in charge but if I ever find out, it is not going to be pretty. I may not know who is in charge, but I am here to scream and cry and yell until someone fixes it. The world owes all the parents, and children out there, who are dealing with this, better outcomes and answers. They owe us, because too many kids are suffering and DYING from the NUMBER 1 DISEASE KILLER IN CHILDREN!!!!!!!!!!!!!!!!!!!!! HELLO ASSHOLES!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! What do we have to do to get people to start acknowledge this?????? We have billboards, TV, Movies, Books, Magazine Ads, but NOBODY is willing to take this on? St. Jude’s is not enough to get the word out. It’s not acceptable that when people think of childhood cancer, they think of only St. Judes. It’s a start, but bigger things have to start happening or our kids don’t stand a chance. Ronan did not stand a chance and he should have. He MATTERED. He should still be here but because of the lack of awareness and funding, he is sitting in an URN on the top of my fucking dresser where I get to kiss him goodnight now. So karma, can kiss my fucking ass. This has nothing to do with karma. It has to do with bad luck and a society that would rather look the other way and watch the fucking Kardashians on T.V because that is what matters in this world? Because childhood cancer is too sad and it doesn’t happen to kids. Well FUCK YOU. You know nothing about sad asshole society. Unless you too, have had to bury your child. Unless you too, are now expected to live in a world that is UNFUCKINGLIVABLE. If you know what this is like, then do something about it. If you don’t know what it’s like, do something about it, so that if the awful time ever comes, that you do… and I pray to Ro that it doesn’t,….. you will know that you helped make a difference. Stop standing around like a bunch of ignorant fuckwads! Stop being scared! Be the change you want to see in the world. Stop being so selfish and wasting time on things that do not matter when you could be doing something like helping to save a child’s life by making people aware of how ugly childhood cancer is. How it deserves to be recognized. How people need to stop doing things just to have their fancy name on a fancy door at a fancy hospital to go to a fancy ball so they can dress up in a fancy dress. Clinical trials need funding. Research needs funding. This is the only way the results for childhood cancer are going to change. You can build all the fancy hospitals you want but if the right answers are not there, I hope you felt really good about eating in the new cafeteria while the Friday Night Candy Cart came by all while your child was really dying. I hope that free meal, was worth it. I would have rather sat my ass in a ghetto of Mexico with Ronan if I knew the treatment there, would have been the best chance he had. Not because I cared about what the hospital looked like. I’ll bet you half of the people who are donating, do not even know where their money really goes. Do they ask? Probably not. Is it going to save a kids life? I doubt it. But it makes them feel good because they get to put on the fancy dress and Louboutin shoes and have their picture in a fancy magazine so they can show all their fancy friends and feel good about themselves. Unless you are on the floor of a hospital, wearing your Louboutins, getting down and dirty, holding the babies who need to be held because their parents work 3 jobs so they can’t be there……..Fancy can get FUCKED.

I know I still have not been clear on where this money is going to go towards. As of now, it’s piling up. I am going to NYC Janury 22-30th to meet with a couple of people who I hope can steer me in the right direction. I have to cover all of my bases. I am meeting with Dr. Mosse at CHOP in Philly to look at the clinical trials she is working on. I believe in her and I know she is doing everything she can, to make a huge difference in Neuroblastoma. This money, will NOT be used so Ronan’s name can go on some fancy door. This money will be used to help with research of clinical trials that will hopefully let some children at least celebrate another birthday. I know the doctors are no where close to having a cure for this disease, but FUCK. What I wouldn’t have given, to have had Ronan around to celebrate another birthday. What I wouldn’t have given for some more time, with my baby boy. Anything I had. Everything I had. My hands, arms, legs, eyes, whatever it would have taken. I sold my soul a long time ago to somebody. He can keep that. I don’t want it back. I’m in the process, of finding a new one because the soul that once was me; is DEAD.

Ro baby. I don’t know what else to say. Except I am sorry every second of life. I do not think you are WILD and FREE up in heaven with GOD. Enough with that people. Or keep it to yourself. I don’t want to hear it. I am not on this one all mighty GOD bandwagon. And if he is hanging with God, then GOD is an asshole because he should be here with ME. His FUCKING MOTHER. The only one who was ever supposed to take care of him. Can’t we just leave it at Ronan is wild and free? That gives me a tiny bit of peace. Not much but it’s better then nothing. Ronan was too much of a rebel to be hanging with this “God” dude. He is wild and free all by himself. But I’m sure he’s got a great wolf pack in tow, following right behind him. I love you, Ronie baby. I miss you. I hope you are safe. Please make me a little less sad tomorrow. I don’t know if I will make it if things continue on this way. Why can’t anyone save me? You know why, Maya. Because you never let them. You’ve always saved yourself. The cycle…continues. It’s been this way since you were 9 years old. I doubt things will ever change. The only person that can save you; is you. I know this. I just wish someone could swoop in for a bit so I could take a break. But no breaks here. This mission is too big, but not impossible. You were mine, you changed my entire life, I am here to carry this out for you, baby doll. Just like we talked about. G’nite my sweetest boy. I love you. Sweet dreams.

Throwing this in here for you all tonight. I talk about living a fearless life a lot now. Because I do. I don’t fear much of anything…. unless you count Rats, Mama Kristi…. that was for your Raine. xoxo

So read this. Think about this. Tonight, when I was needing some inspiration, I found this thanks to Dr. JoRo. I felt hopeful once again. I felt like I can do this. I can change this. I’m not afraid. I’m a rebel at heart. Ronan’s Rebel Forever baby. Breaking the rules, all the time.

by Jiddu Krishnamurti

“I WONDER IF WE HAVE EVER ASKED ourselves what education means. Why do we go to school, why do we learn various subjects, why do we pass examinations and compete with each other for better grades? What does this so-called education mean, and what is it all about? This is really a very important question, not only for the students, but also for the parents, for the teachers , and for everyone who loves this earth. Why do we go through the struggle to be educated? Is it merely in order to pass some examinations and get a job? Or is it the function of education to prepare us while we are young to understand the whole process of life? Having a job and earning one’s livelihood is necessary- but is that all? Are we being educated only for that? Surely, life is not merely a job, an occupation, life is something extraordinarily wise and profound, it is a great mystery, a vast realm in which we function as human beings. If we merely prepare ourselves to earn a livelihood, we shall miss the whole point of life; and to understand life is much more important than merely to prepare for examinations and become very proficient in mathematics, physics, or what you will.

So, whether we are teachers or students, is it not important to ask ourselves why we are educating or being educated? And what does life mean? Is not life an extraordinary thing? The birds, the flowers, the flourishing trees, the heavens, the stars, the rivers and the fish therein- all this is life. Life is the poor and the rich; life is meditation; life is what we call religion, and it is also the subtle, hidden things of the mind- the envies, the ambitions, the passions, the fears, fulfillments and anxieties. All this and much more is life. But we generally prepare ourselves to understand only one s mall corner of it. We pass certain examinations, find a job, get married, have children, and then become more and more like machines. We remain fearful, anxious, frightened of life. So, is it the function of education to help us understand the whole process of life, or is it merely to prepare us for a vocation, for the best job we can get?

What is going to happen to all of us when we grow to be men and women? Have you ever asked yourselves what you are going to do when you grow up? In all likelihood you will get married, and before you know where you are you will be mothers and fathers; and you will then be tied to a job, or to the kitchen, in which you will gradually wither away. Is that all that your life is going to be? Have you ever asked yourselves this question? Should you not ask it? If your family is wealthy you may have a fairly good position already assured, your father may give you a comfortable job, or you may get richly married; but there are also you will decay, deteriorate. Do you see?

Surely, education has no meaning unless it helps you to understand the vast expanse of life with all its subtleties, with its extraordinary beauty, its sorrows and joys. You may earn degrees, you may have a series of letters after your name and land a very good job; but then what? What is the point of it all if in the process your mind becomes dull, weary, stupid? So, while you are young, must you not seek to find out what life is all about? And is it not the true function of education to cultivate in you the intelligence which will try to find the answer to all these problems? Do you know what intelligence is? It is the capacity, surely, to think freely, without fear, without a formula, so that you begin to discover for yourself what is real, what is true; but if you are frightened you will never be intelligent. Any for of ambition, spiritual or mundane, breeds anxiety, fear,; therefor ambition does not help to bring about a mind that is clear, simple, direct, and hence intelligent.

You know, it is really very important while you are young to live in an environment in which there is no fear. Most of us, as we grow older, become frightened; we are afraid of living, afraid of losing a job, afraid of tradition, afraid of what the neighbors, or what the wife or husband would say, afraid of death. Most of us have fear in one form or another; and where there is fear there is no intelligence. And is it not possible for all of us, while we are young, to be in an environment where there is no fear, but rather an atmosphere of freedom- freedom, not just to do what we like, but to understand the whole process of living? Life is really very beautiful, it is not this ugly thing that we have made of it; and you can appreciate its richness, its depth, its extraordinary loveliness only when you revolt against everything- against organized religion, against tradition, against the present rotten society, so that you as a human being find out for yourself what is true. Not to imitate but to discover- that is education, is it not? It is very easy to conform to what your society or your parents and teachers tell you. That is a safe and easy way of existing; but that is not living, because in it there is fear, decay, death. To live is to find out for yourself what is true, and you can do this only when there is freedom, when there is continuous revolution inwardly, within yourself.

But you are not encouraged to do this; no one tells you to question, to find out for yourself…, because if you were to rebel you would become a danger to all that is false. Your parents and society want you to life safely, and you also want to life safely. Living safely generally means living in the imitation and therefore in fear. Surely, the function of education is to help each one of us to live freely without fear, is it not? And to create an atmosphere in which there is no fear requires a great deal of thinking on your part as well as on the part of the teacher, the educator.

Do you know what this means – what an extraordinary thing it would be to create an atmosphere in which there is no fear? And we must create it, because we see that the world is caught up in endless wars; it is guided by politicians who are always seeking power; it is a world of lawyers, policemen and soldiers, of ambitious men and women all wanting position and all fighting each other to get it. Then there are the so-called saints, the religious gurus with their followers; they also want power, position, here or in the next life. It is a mad world, completely confused, in which the communist is fighting the capitalist, the socialist is resisting both, and everybody is against somebody, struggling to arrive as a safe place, a position of power of comfort. The world is torn by conflicting beliefs, by caste and class distinctions, by separative nationalities, by every form of stupidity and cruelty- and this is the world you are being educated to fit into. You are encouraged to fit into the framework of this disastrous society… and you also want to fit in.

Now, is it the function of education merely to help you to conform to the pattern of this rotten social order, or is it to give you freedom- complete freedom to grow and create a different society, a new world? We want to have this freedom, not in the future, but now, otherwise we may all be destroyed. We must create immediately an atmosphere of freedom so that you can live and find out for yourselves what is true, so that you become intelligent, so that you are able to face the world and understand it, not just conform to it, so that inwardly, deeply, psychologically you are in constant revolt; because it is only those who are in constant revolt that discover what is true, not the man who conforms, who follows some tradition