Read. Listen. And never say these words to someone who has lost a child. I’ve heard them all way too many times.

99290366754858956_FuB4zZhf_f

http://stillstandingmag.com/2014/01/6-things-never-say-bereaved-parent/

Without a doubt, the MISS Foundation saved my life

tumblr_mkuyjdKZeu1qdjda6o1_500

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

2 years makes me want to rip my hair out while screaming for you like the wild animal that I am

tumblr_mgzlx8Sc7E1qz8rpeo1_500

 

 

 

Ronan. I’ve started to write a few times, but I’ve erased everything over and over again. I don’t know how to put into words what this day feels like; almost 2 years without you. Your Poppy sister has been a great distraction. So much so that I find myself missing my grief and my pain. So much so that I feel like I am betraying you by not feeling the intensity of my grief as much as I used to because your Poppy sister makes me feel that peaceful. I knew the 9th was coming, but it’s like I’ve had my head buried in the sand because I’ve been trying my best to hide from it. There is no hiding from this day. It will come no matter how much I beg and I plead for it not to. Everybody that knows us, knows what this day brings and those who have forgotten, well what can I say?? Life goes on for them, right? Of course it does. Or as the French say, “C’est la via. Those closest to our hearts are here with us on the day of hell in one way or another. Those closet to our hearts, know how hard this day is for us and are kind enough to acknowledge it. It means so much to me that they do. And those beautiful strangers, Ro. Wow. Oh so beautiful indeed. You would not believe the outpouring amounts of cards, emails, tweets, texts, Facebook messages, etc… that I am receiving. With each and every single one, the tears fall down my face. Love and tears, love and tears, so much love and tears, Ronan. So many beautiful souls are being guided and changed, all for the better. All because of you, the most beautiful little boy to ever walk the planet. Bittersweet beauty I call it. So very bittersweet which you know is the theme of this life I’m now left behind in.

Yesterday was when it really hit me that your 2 year death day was approaching. I went to see your Sparkly before we left town. We sat and I think I looked like a deer in headlights for much of our time together. So much so that at one point I had forgotten for a split second that it was the month of May as I refered to something that was supposed to be happening, to happening in April.

“Sweetheart, it’s May. If that was supposed to happen in April, you need to check up on that,” he said to me while my eyes filled with tears.

Even though I knew it was May, for a split second it slipped my mind because that’s how much I did not want this month, to happen. Seems silly right? I mean, no matter what month it is, you are dead. Nothing can change that or bring you back, even if we could fast forward through this month entirely.

I just looked at the floor. I then looked back up at him.

“2 years, 2 years, 2 years. How can that be already?”

He gave me some smart ass answer to try to make me laugh. I kicked his foot in protest and when he saw that his little wise crack was not going to work, he went into something more serious. Something about my pain and how my pain is never going to go away, but look at all the good I am choosing to do with this pain. How I could have done nothing or even worse, I could have let this pain ruin my life, but I chose the opposite. It was the best pep talk he could give me 2 days before your Deathiversary. We sat a little longer and stared at your sister while catching up on other life things. Right before I left he looked at me and said, “He is o.k. I promise you that.”
I said to him, “How do you know?” “You just have to trust me. I know,” he said. I did what I always do which is made him promise me again. He did. I know he believes this. I believe him, but it still does not take away any of my worry over you. I will forever worry about you, Ronan. I worry about you so much and I don’t think that will ever go away. I am your mother. I will worry about you for the rest of my life even though you are not here on this earth. It’s part of what makes me forever your mom.

We left town. Had to leave town as being in Phoenix tomorrow on the day you died is not anywhere I ever want to be on this horrific day. My idea of putting us all on a plane to Ireland didn’t happen due to not wanting to compromise your Poppy’s sisters non-existent immune system. We drove up to Sedona instead. We spent some time with Dr. JoRo. She bought you a “We miss Ronan,” cake. Please tell me what other therapist in the world would have done something as thoughtful as that, Ronan? I’ll bet you a big fat NO OTHER THERAPIST IN THE WORLD. She is truly amazing and I will forever tell you thank you for her. The world needs 10,000 more of her on the planet. We will spend tomorrow together as a family missing you so much. I will try my best not to reenact the end scene from, “Thelma and Louise,” where they drive off a cliff together. I think your Poppy sister is too young to be my sidekick for that adventure. We will go and throw some rocks over a cliff instead or do something a little more safe but totally dangerous too in a PG-13 kind of way. Please just help me get through the day, o.k.?

This is all I can write tonight. Did I even make sense? I haven’t slept much so sorry if my thoughts are not flowing very well. This was the best I could do tonight through a heavy heart and blood-shot eyes. I miss you so much.

G’nite baby doll. 3:25 a.m. when you took your last breaths will be here soon enough. I’ll be up of course, screaming and crying for you as silently as possible as not to wake up your daddy, brothers or sister. I miss you. I love you. I hope you are safe.

xoxo

P.S. I’ve also decided that tomorrow is National F U Cancer Day. It will never be the day you flew off to go be an angel or went home to where you belong. Fuck that shit. You belong here with me and anybody that says otherwise is a douchebag idiot. Tomorrow is an asshole of a day, thanks to that bigger asshole named cancer so there it is, May 9th National F U Cancer Day. Thanks for killing the love of my life and so many other innocent victims. I will be giving you my best middle finger tomorrow painted extra purple and sparkly just for you, Ro.

As your Mr. Sparky Eyes would say, FUC. I couldn’t agree more.

 

601848_10151666230181667_867422466_n

I thought I was ready, but I’m not ready.

tumblr_mkkx5ofDeg1rnofw4o1_500

Ronan. It’s normal to sit partly naked on a table at your OBGYN’s office and cry, cry, cry while waiting for her to come in a check your cervix, right? I was really trying to avoid this today. I had my nose busily buried in a book that I was reading on my iPad, but somehow it was as if my hands were not my own anymore and the next thing I knew I was swiping my fingers across all of my pictures on my iPhoto only to be staring at you and your big blue eyes while I waited for Dr. Schwartz to see me. I can usually do this and be o.k. I mean, I look at your pictures all the time, but today looking at them left me with tears streaming down my face and wet spots all over my iPad. There you were in every picture, smiling your beautiful smile at me while I traced your mouth with my little pinky as if I were actually touching you. I listened to the voices screaming in my head that it couldn’t really be this way, that my darling, sweet boy, didn’t really die of cancer. The flashbacks began. The ones that forever haunt my mind. The way I watched cancer eat away at your little body, mind and soul. The pain that set in during your last week or so that I could not rub or kiss away no matter how hard I tried. Your sunken eyes, bloated belly, cold lips and stiff little legs. The pain that I now feel every single day and the sadness that never goes away. Now the harsh stares, un welcomed judgment about the grief that I carry around with me. The grief that nobody will ever truly understand but they sure can pretend as if they do while voicing their opinions about it while judging away. The baby sister that is now almost here that will supposedly heal my broken heart according to the world around me. It’s like the outside world thinks she is the magic pill that I’ve so been searching for but will never actually swallow no matter how hard they try to shove it down my throat. Those who know me well, understand my truth. Those who know me well, know that no amount of time, love or even a new human being will ever take away my pain of having to live my life without you and they don’t judge me because of that. It only seems to make them love me more. Those are the people I surround myself with. The handful of people that are not afraid to be a silent witness to this pain and only fill us with unconditional love. They lift us up not bring us down with their words of kind compassion, non-judgemental stares, and they are just so proud of us for still being here and being a loving family to one another. There are no expectations, no whispers of he’s in a better place, or she is doing everything wrong. I hear the whispers and I am very aware of who is doing the whispering. It’s like I have a sixth sense for those things and I have learned that the whispers will always be there, but I have a choice of whether or not I hear them. I mostly choose to tune them out because I know at the end of the day the proof is in the pudding and the pudding being your daddy, your brothers, and the amazing friends that have become family. Not to mention your Nana and Papa Jim. I always say I swear I could murder someone and your Nana would still say, “I am so proud of my daughter.” I know what it is like to be unconditionally loved, thanks to her. She has taught me a very valuable lesson through all of this. One that I could never repay her for or say thank you enough for. That’s the great thing about your Nana, too. After everything Ronan, after all of her love, support, strength, sadness, help… she would never look at me and say, “You owe me for this for all I have done for you. Or you hurt my feelings because you don’t pick up the phone. Or you are being selfish, rude and need to get over this.” She would never make this about her in any way shape or form. She is absolutely the most selfless person on the planet and I only hope that I too, am silently following in her humble footsteps. I know how much she misses you and misses me. I hope one day that I can start picking up the phone more like I used to when you were here. I am thankful that she does not take any of this personally because she knows that I am just doing the best that I can and to her, that is more than enough.

I cleaned myself up before Dr. Schwartz came into the room. I know I looked like a bloody mess as my entire face was blotchy and red. I was quiet when she came in to see me today and asked me her usual questions and went on with her exam. I told her how I have been getting sick again. Mostly during the middle of the night the throwing up starts. I won’t ever know if it’s your sister or my body’s way of reacting to my grief. I have a feeling it’s a little of both. She checked my cervix and measured my belly which is still measuring a week ahead of time. “O.k. it’s not going to be much longer now. You’ve dilated quite a bit. Let’s put you back in a room to see what’s she’s doing and watch your contractions.” I headed back out into the waiting room to wait for a room to open up. There was a girl out there, waiting with her little boy. I tried my best to avoid eye contact, but she smiled so I of course said hello. I was a wreck and listening to the little boy call out, “Mama!” was enough to make my eyes well up with tears as that is what you always called me. He was so cute but I refused to look his way as I knew what was going to happen if I did. I was doing a pretty good job of reading my book until his little car came flying at my feet because he had thrown it across the room at me. This made me laugh as I bent down to pick it up as it is so something you would have done. I returned the car to his mama and she shyly looked at me and said, “You’re Maya, right?” I smiled and said that I was. The girl told me how she has been reading my blog forever and how she actually saw me a couple of weeks ago out and about but didn’t want to come up and bother me. We sat and chatted for a bit while I tried not to get lost in the blue eyes of her little boy. She could not have been sweeter and told me how meeting me had made her day. I gave here a ziplock bag full of your bracelets that I just happened to put in my purse this morning. I knew there was a reason that I packed them. I don’t always leave the house with a bag full of your bracelets, but today I felt like I might need them. I’m so glad I was right:)

I finally got back to the room where my contractions were monitored and your Poppy sister was, too. Dr. Schwartz came in and read the results and told me due to my contractions, she wouldn’t be surprised if she saw me before Friday which means I could have your Poppy sister at any time. I thought I was ready for this but I think I’ve changed my mind. I’m not ready and I’m bloody scared as hell. The only part of me that is ready for this is my body. My tired body is more than ready to have this baby girl. My heart and my mind aren’t so sure. Can I do this doubts fill my head. Your Sparkly promised me that I indeed, can do this. I know he is right, but it doesn’t seem to be making things any less scary or sad. My excitement for your sister seems to have been put on hold due to the anticipation and emotional roller coaster of tears that will not seem to stop. I can’t seem to stop thinking about the fact that you won’t be here to hold her, love her, kiss on her the way I know you would be doing if you were here. I try to calm myself about this by letting my heart remind me that although you are not here, you will forever be watching over her, guiding her and protecting her in ways that only you can do. I would give anything for you to actually be here, teaching her all sorts of naughty things and causing all sorts of trouble but as I’ve learned the hard way, beggars can’t be choosers.

I’ve got to run, Ronan. Your Bri Bri aka, my little sissy is in town for orientation at ASU. Can you believe that? I don’t know where the time went as it seems like just yesterday I was bouncing her on my hip, watching her grow up and bounce Liam and Quinn around and then, you. Now she is all grown up and is finally going away to college to ASU. I’ve listened to her talk about ASU since she was 8 years old and how she would go to school there someday. That someday is almost here and I am so excited to have a little piece of our family in Arizona with us. Your brothers are thrilled. I know she is nervous but we are going to take such good care of her. I so wish you were here to be a part of this with all of us. You loved your Bri Bri so much. You two and your big blue eyes were quite the pair. I can’t wait for Bri to meet this Poppy girl. I know she is going to be so helpful with her the same way she is with your brothers. Best little sissy ever;)

I miss you. I love you. I hope you are safe. Sweet dreams, little one.

xoxo

P.S. I just wanted to say a thank you to all of you lovely souls who have been sending the sweetest little gifts, cards, and even a few Poppy things. I even got a little Poppy headband and matching socks all the way from Ireland a couple of days ago. You all are the most thoughtful creatures on the planet. Thank you for loving my little boy and our family so much. Thank you for letting Ronan make you the most beautiful people. It makes my very broken heart, skip a beat. I love you.

Rain, rain, don’t go away…and please don’t let Poppy be born dead.

tumblr_mj0qiqDDaZ1qlit1ao1_500

Ronan. It’s the middle of the night and I can hear the rain. It’s pouring down outside. I just went to check on your brothers and in doing so, I have to walk by your empty room. I peaked inside. Nobody was there. That reality never gets any easier for me. I think I ended up losing my shit yesterday. It was really triggered a couple of days ago when I came home in the middle of the day from somewhere and I walked into our quiet house. I had been working at our kitchen table and I had left a bunch of packages on top of it, right where you would normally be sitting. As I turned the corner to our kitchen, I thought there was somebody sitting in your spot. I thought it was you. I imagined it was and how I would react. I imagined scooping you up, kissing you all over, crying tears of joy, and saying over and over that I always knew you were really coming back. This image has haunted me for days now. I was out all day yesterday, being productive and came home after a long day of trying to be a part of this world. That’s when I lost my shit and could do nothing but pace our house, crawl in my bed, and cry for hours on end. Your daddy came home to see me in bed. I had gotten a text from my mom friend, Sarah, asking if I was going to support group tonight at Dr. Jo’s. I told her no, that sitting around listening to everyone talk about their dead kids, was not a good place for me. Especially as of now, due to the life that is growing inside of me. Support group is hard anyway but it’s even harder to go being pregnant. Sarah said she selfishly wished I was coming as she was wanting to see me. I wanted to see her as well and her partner, Rae Ann. Noah’s mom’s. I sent Jo a little text to ask if she was leading group. She said she was and she could see me before hand as well. I threw on some appropriate clothes (pants included) and hardly said 2 words to your daddy as I headed out the door with my tear-stained cheeks and blood-shot eyes. Our house was screaming at me and I could no longer take it.

I got to Jo’s a sobbing mess and told her what was going on. She sat, asked me some questions, gently reminded me of all the stress/crap/petty fucking stupid fucking shit/insane pretend problems that normal people have that I don’t understand anymore that I’ve been trying to deal with and understand/the fact that I’m about to have a baby/ and how your two years is approaching. No wonder I am freaking the fuck out. She knows these next few months are going to be hard. May is right around the corner, you know. I just sat and cried and talked when I could. Before I knew it, it was time for group to start. I had decided to stay mostly because I just wanted to be with Noah’s mom’s. It was a pretty full group. It went a little something like this. Stillbirth, me-cancer, stillbirth, stillbirth, stillbirth, 8-month old unknown cause of death, 3-year-old just stopped breathing, 8th month old-can’t remember, still birth, still birth, murdered child, 8 month old again. Of course you know why I think Poppy is going to be born dead. Because I live in the world of childhood cancer and still births. I talked a little but was mostly too upset to even tell your story. Support group never gets easier. The death of your child, never gets easier. It’s not something we will ever overcome. It’s not like AA, where we can recover from our disease, start over, and live a clean, healthy life. Our disease never goes away. I think about this a lot, especially when I am in a group setting like tonight. How the world is so accepting of people who are trying to recover from alcohol or drug abuse. How there is so much love and support out there for them over something that is a choice for most people. I understand that being an alcoholic or abusing drugs is an ugly, powerful disease in life, but most people, not all, make the choice to do these things. None of us parents, made the choice for our kids to get sick and die, yet there is so little love and support out there for us. Society doesn’t want to acknowledge us, Betty Ford doesn’t fit for us, the government doesn’t care about us. So where do we go and what are we left to do, to get through this?

In my dream of all dreams, after I get this care center built, I want to help Jo with one of her little dreams. That is creating a safe place, almost like a rehab for these parents to come to that have lost a child. A safe place for parents to come, with the proper counselors and proper kind of compassionate care that they so need. A place where bereaved parents can try to process their grief before being shoved out into the cruel, harsh, happy go fucking lucky world again where everyone has a living child, except for them. A Betty Ford for bereaved parents in a way. I would have went to a  place like that. I think it would have helped me a lot in the beginning. Oh, people wanted to send me away alright. But it was only to a mental ward where that shadow would have haunted me for the rest of my life because I’m sure I would have been given a permanent  diagnoses of bullshit that would have followed me around forever. This is a path of life that we as parents, will never get off of. There is no changing our course. There is no bringing our children back. We are stuck here, forever. It’s like the ultimate prison where we as parents have done nothing wrong except for love our kids with everything we have, yet we are serving a life sentence for a crime we didn’t commit. (well, unless you are someone like Casey Fucking Anthony, then you should rot in hell a.k.a. a real jail cell for the rest of your life)

There is no place for parents to go so we are all forced back out into a world that does not exist for us and we are expected to be o.k. Hey, our kid or kids just died but we’ll get over it, right? Life just goes on and we are expected to be strong because being strong is the only choice we have. It’s wrong. We all need a break from being this strong once in a while. Being this strong can be torture at times. Bereaved parents need a safe place to go where their children are remembered and they can take a break from being strong for a while. As much as I think support group is great, a tangible place where parents could go to for longer period of time than an hour a month, would be so much freaking better. Add it to my list of big dreams. It seems so obvious to me and I don’t understand why it doesn’t already exist. I guess it’s because Dr. Jo hasn’t done it yet and she is the only one fit for this job. Someday, I promise this is going to be a reality and I will do whatever I can to help her with this.

I have to run today, Ro baby. I have an interview in a few minutes. I miss you. I love you. I hope you are safe. Thanks for the rain last night.

xoxo

Pediatric palliative care research study. Please read if you are interested/know anybody who is interested.

tumblr_mi25hb3sYk1r3e62yo1_500

 

 

 

 

My Dr. JoRo is conducting a study. Please see the information below. Thanks!

 

 

We are inviting those aged 18 or older to participate in a research study intended to explore the experiences of those who utilized pediatric palliative care for their child before and during his or her death. The purpose of this study is to determine the individual, familial, and societal effects of this experience and to improve standards of palliative care for families of dying children. Another purpose is to gather information about which attitudes and actions parents found helpful to them, and which ones they found unhelpful or harmful. Our goal is to improve a model of compassionate caregiving and intervention that fosters resiliency at every level. Our team consists of an experienced researcher (Joanne Cacciatore, PhD, FT), a doctoral student (Kara Thieleman, MSW), and a master’s level social work student (Angela Lieber) from Arizona State University. If you decide to participate, one of these three individuals will arrange an interview with you. Interviews will be recorded and transcribed. Interviews may last between an hour to two hours. Your participation in this study is voluntary and your identity will remain anonymous. If you choose not to participate or to withdraw from the study at any time, there will be no penalty or loss of benefit. Participants will be provided with a list of bereavement resources and we will gladly provide you a copy of the final paper upon completion.

Please contact Dr. Joanne Cacciatore-  jcaccia@me.com – if you are interested in being interviewed for this study.

Dear Ronan and Teddy, I’m so sorry.

tumblr_ma6obsuEoy1rxj7o8o1_500

Ronan. I had planned on writing to you about all the things I’ve been doing this week to keep myself busy. Some really, really great things. I actually thought I was having an o.k. week. I’ve had some really great things happen that I was going to talk in full detail about. But right now, I can’t. Right now, I am sitting here listening to the rain pour down on the roof and I know it’s your tears, my tears, Teddy’s tears, and the tears of everyone that loved him. Teddy died today or this evening. I’m not sure when, but it happened not long ago. I was on my Facebook a couple of hours ago, checking in on him. The third thing to pop up was his little picture with his birthdate and the day he died on it which was today. Quinn was in my bedroom when this happened. I started punching some pillows. My phone rang. It was Macy. I didn’t answer it. (sorry, Mace) Quinn ran over to see who called me. I took my face and buried it in my hands and started to sob and sob and sob. Quinn saw. “Uhhhhh…. dad. Macy just called and mom is crying.” He ran out of the room to get your daddy. I just sat and cried with my face in my hands because I couldn’t do anything else. Your daddy came into the room and saw what was up on my computer screen. Quinn saw it, too. “Teddy died? That boy we met this summer?” Your daddy said yes, rubbed my back and told me he was sorry. They left the room after that so I could continue to weep for that precious baby boy, that reminded me so much of you.

I sat for a good 15 minutes and cried about Teddy. Liam came in the room and Quinn told him the news. “Oh. That’s sad,” Liam said. I got up out of bed. Your daddy left for a Christmas party. There was no way I was going to that. I would have went postal and ended up doing something totally psychotic, especially after hearing the Teddy news. I sent him on his way. Your brothers and I lit our menorah and said our own version of a prayer which is entirely made up of talking to you. I asked you to keep Teddy safe and that I knew you two would be great friends. Quinn said he hopes you two are playing together. Liam said he was sorry, he missed you and you were both wonderful boys and he hopes you are together. I tucked them both in while begging you in my head to keep your brothers healthy and with us for the rest of our lives. Please, Ronan. I can’t ever lose another child again… Keep them safe for me. I love them so much. Poppy too.

My days this week have been crazy. I made your daddy president of your foundation. I went to an AA meeting today to support a dear friend, not because I am an alcoholic. You know me and how I spit out wine because I think it tastes so disgusting, but today I was invited to sit in a room where I got to listen to a bunch of problems that for once, were so different than my own so I jumped at the chance. I sat and cried while listening to other people’s pain. It meant a lot to me to be able to go and support my friend. It’s the least I can do after how much she has supported me during all of this. Exciting things have been happening with this book. I had a phone conference today where I called up that awesome company Spirit Hoods and ran my idea past them about having them make a limited edition Spirit Hood in honor of you and all kids fighting cancer. www.spirithoods.com I told them my idea for a monkey one where the inside of paw will incorporate the Gold Ribbon so more people will know that the GOLD Ribbon represents childhood cancer. They are so on board and so excited. I was literally jumping up and down when I got off the phone with them. You loved your little spirit hood so much. I went to the PCH clinic today in honor of Taylor Swift’s birthday and passed out a bunch of her RED C.D.s, RED bracelets and all other things Taylor inspired. I got to see a bunch of our favorite faces and give them all big hugs. See, Ronan. Lots of good things are happening which is why I cannot listen to that voice screaming in my head that I cannot live in this world anymore. I don’t hear that voice very often anymore, but hearing the news about Teddy today maked me just want to curl up in a ball and die. But I won’t and I can’t because if I do, things like all the things I mentioned above, won’t get done. And bringing some smiles to some kids’ faces today who are dealing with this asshole called cancer will be enough to make me ignore that fucking voice that is telling me that all of this is just too painful.

I met a mom today. Another mom that lost her older son in a totally different way. I think he was about 19. I think she said it had been 9 years since he died. She said she used to read my blog, but had to stop because it became too sad. But she thanked me for it too and said it has helped so many people. We talked about a lot of things. And although it had been much longer since her son passed away, her pain was just as present as mine. It doesn’t go away or lesson. It is always there, and from the look in her eyes today, you would have thought her son had just died yesterday. I cried with her. I cried for her. I told her I was sorry. We made plans to get together. I really hope we do. We are in that fucked up club that feels so lonely most of the time. So when you find “another” who is like you, you latch on. At least I seem to do. We already have an instant bond that no parent wants in life, but as I am finding out, so many do.

It came up today that I had lost a child. The person that I was telling this to, automatically went to, “Oh, he’s an angel now!” 6 months ago, this would have left me speechless. Today, the little antennas went up on my head. The mama tiger in me came out and growled in the nicest way possible, “Well, he shouldn’t be. And I don’t want him to be. He should be here with me. No parent should have to be without their child.” I know this woman meant no harm. But I also know I have no tolerance for the stereotypical shit that gets said after people find out you have a dead kid. I am done playing the nice, sweet role where I politely smile and say, “Thank you for you kind words.” That leaves me feeling resentful in a way because I am not being true to myself because I am too worried about hurting other peoples feelings. I get it. People don’t know what to say when they hear you have lost a child. But you know what???  If you don’t know what to say, the best and simplest thing is to just say you are sorry. Those words are golden in my book. Solid gold.

Alright little man. It is pouring down rain. I know why. I hear you loud and clear. I’m sorry you and Teddy have to be friends somewhere else and it’s not here. Please take care of him. Please tell him to take care of his parents and his older brother the way you are taking care of all of us. I’m sorry, baby boy. I’m so very sorry. I miss you. I love you. I hope you are safe. Sweet dreams, Ronan and Teddy. I love you both.

xoxo

P.S. Fuck you cancer. You are the biggest fuckwad I’ve ever met in my LIFE!

photo

Sometimes even I need a reality check

Ronan. I woke up yesterday morning with a Halloween grief hangover. I felt like I had been hit by a bus. I was determined to not stay in bed all day, like every aching bone in my body was begging me to do. I had to talk myself out of doing this and it took a lot but I wasn’t about to give into my grief and let it chain me to my bed all day long. I got ready for the day instead and headed over to my office. Thank god for that place. It is helping me so much. I pounded out a few things that I needed to get done. I had an interview at 1:00 that I so did not feel up for, but the person interviewing me was coming to my office so I told myself just to stick it out and I would go home and crawl into bed, after it was over. Little did I know, that this 22-year-old kid was about to make my day.

I never know what to expect when doing these interviews. They can be emotionally draining most of the time and quite honestly, I don’t love doing them. I would rather just hide behind my computer all day wearing my spirit hood, glasses and pajamas. But I also know that I am very lucky to have the opportunity to get your story out there in a way that will raise awareness for childhood cancer. I know this comes with the territory and is a part of me being an advocate for you and all of these other kids who have been dealt this shitty hand in life. They don’t have a voice. I do. I will use it and scream for you and them as loudly as I can. I will use this platform to do great things and hopefully help change this devastating world. As soon as Tyler walked into the room, I knew I was going to love him. He was so nervous and I could totally tell. He sat down and told me a little about himself and why this story struck such a nerve with him. He had me at hello and the fact that he was wearing a skull shirt, made my day. “Tyler! You have on a skull shirt, I have on a skull necklace! You could be my 22-year-old soul mate!” I tried to put him at ease as much as I could. He had his notebook full of questions and it was so refreshing to see that he had really done his research on my blog and all things you. That made me like him right away and automatically made me respect him right from the get go. It was so refreshing to see he was serious about us, our story, and helping to get our message out there. Our interview went on for about 2 hours. We had a good little thing going back and forth. I was so impressed by him at one point I thought, “I hope Liam and Quinn turn out to be like this kid. His parents must be so proud of who he is and all he stands for.” I told him being interviewed by him was one of the greatest interviews I’ve done yet and I truly meant it. I know he is going to do a great job on our story and I can’t wait to see what he does with it. He left me by saying, “Please don’t go home and throw up because this was so hard.” I told him that in no way did I feel sick and the interview was actually really great. I gave him a big hug and told him thank you. I felt like I had just spent the afternoon with my little brother. It was a great afternoon for once and I left feeling totally inspired by the youth of today. Mark my words, that young soul will help change this world in one way or another.

I left shortly after Tyler left. I ran home to do some things. There was a support group going on at the MISS foundation and Dr. JoRo was leading it. As much as I hate support groups, because to me they are so painfully hard, I dragged my butt down there to attend. I’ve only been to one before and it was so awful that I refused to go back. I sucked it up last night for a couple of different reasons and I have desperately been missing Dr. Jo, so I knew that seeing her would be great. My favorite mom’s were there. The mom’s of a baby boy named Noah. I was so happy to see them and was able to spend some time with them. I adore everything about those two except for the fact that they have a dead child, just like me. I got settled into group and we all went around and told a little bit about ourselves and our kids. I felt vulnerable, sad, and scared sitting in that group. I know everyone in the room is there for the same reason so it should feel safe to me, but to me it just feels like the saddest place on earth. Every single person in that room, has a dead child. It is always a wake up call to me, as if I need anymore wake up calls in life. But it honesty is like a slap in the face. I sat and listened to the horrific stories of everyone else. The drowning, the car accidents, the ecstasy story, the stillbirths, the mental illness, the sudden death at school, etc….. Newsflash! Cancer is not the only way kids die. I know this. It made me want to run home and lock Liam and Quinn up forever and beg them to never touch a drug in their life, not drive a car, or leave the house. You think you are immune to your kids dying? You think you are too perfect of a family, for this to happen to? You are not. Nobody is. I think the sooner we as a world start to realize this, maybe we will take less things for granted. Maybe we will enjoy every single split second with our kids because nobody can say when our time is up. Maybe parents will start understanding that being a parent is a privilege, not a right. No matter how much money you have or how protected you think you are. Sitting in that room last night is the most humbling place in the world. Even I myself, need a reality check once in a while to be reminded that I am not the only one hurting this badly. That is why the MISS Foundation is such an important place in the world. Without it I can guarantee you about half of the parents in that room tonight, would have ended their lives. I know I would have. Dr. Jo is part of the reason that I am still here. If you don’t know about the MISS Foundation, please check it out. They have such little funding and need it so badly. It is such a safe haven for all of us parents going through the worst thing possible and Dr. Jo is my absolute idol in life. She is one of the rarest most beautiful souls that I have ever known. http://www.missfoundation.org/

After group ended, Dr. Jo came up to check on me. She knew I was a wreck. She looked at me and said, “How was that for you?” I said, “So Poppy is going to be born dead, right?” I was so shaken up by the still birthing stories. She just looked at me with that wise motherly look in her eyes. “I knew you were going to say that. I know that was hard for you to listen to. Poppy is going to be fine. She has Ronan looking out for her.” I keep telling myself I have to trust in that. I know that Ro. I tell myself that about 100 times a day. I left group beat and exhausted. I came home and crashed out until early morning. I woke up, showered and went to wake up your brothers. Liam was burning up. I put him in a luke warm shower and told Quinn to get ready for school. I had a lot to do today, but canceled it so I could stay home and take care of Liam. He was so sweet and so thankful for everything. I ended up taking him to the doctor to rule out strep because that has been going around. His strep test came back negative and his fever is almost gone. He does look miserable though, so he spent the day resting while I spent the day being domestic around the house. I hate being at home doing all the same things I used to do. Today, I forced myself to cook all day long so Quinn would have a nice meal to come home to after school. Cooking used to be our thing and now it’s just so hard for me to cook without you. Doing anything around the house is hard for me now. I don’t have your clothes to wash, your breakfast to cook, your dishes to do. Not having all of those things to do for you makes doing them sting so badly. Today, I took the day, set myself aside and did things that I knew your brothers would be thankful for. I was right. Quinn must have told me about 10 times tonight, “Thanks for the homemade soup, Mom. It was really good.” This broke my heart in a million pieces. It made me realize that I need to work a little harder around here doing the things I used to do, every single night, such as cooking really great homemade meals. I think the every night thing might be pushing it, but a few nights a week, can be a start. You know why cooking is the most hard for me? It’s because dinner time, with a homemade cooked meal means we have to sit around the dinner table without you. I don’t think that will ever become an easy thing. I often find myself getting anxious and sick to my stomach. Quinn sits in your chair now. I’m just glad someone is sitting there, I guess. He is a good little seat filler.

Your brothers have their last basketball game of the league tomorrow. I hope Liam is feeling well enough to play in it. I’ve made him rest all day and I fed him a good dinner tonight. Hopefully, I can get him to go to bed early to get the rest that he needs. I’m tired too. An early bedtime sounds like a good idea for both of us. G’nite Ro baby. I miss you. I love you. I hope you are safe. Sweet dreams.

xoxo

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

  • Instagram is my BFF

    There was an error retrieving images from Instagram. An attempt will be remade in a few minutes.

Follow

Get every new post delivered to your Inbox.

Join 24,030 other followers

%d bloggers like this: