Ronan. Today didn’t start out extra hard, but that is how it has ended up. So much has been going on. Too much, I suppose. I made it through my birthday as best I could. It it any surprise that I didn’t feel like celebrating? I just wanted the day and night to be over as quickly and painlessly as possible. I didn’t even let your daddy buy me a birthday gift and he is still talking about it, today. He’s begged me over and over to please let him buy me some pretty earrings. He knows if he goes out does it himself, I’ll just return them. Pretty earrings won’t bring you back and that is still all I want. NEWSFLASH PEOPLE, I STILL WANT MY DEAD SON BACK AND TIME HAS NOT MADE THE YEARNING FOR HIM GO AWAY. I still beg for him every single day. So sorry to disappoint some of you who seem to think because of this thing called time, that my wanting my son back will just disappear. That because Poppy is here, she magically makes all my pain and sadness something of the past. She doesn’t. Yes, she brings back such wholesome goodness into our lives, but my pain is still here and just as present as before. I sat with your Sparkly for a while on my birthday because it’s a tradition of mine now, 4 years in the making. I sat across from him as he said, “What did I say, to make you cry on your birthday?” as he watched me wipe my eyes from behind my glasses. I told him that it wasn’t anything that he had said, that I just missed you so much and my birthday seemed to make me miss you that much more. He said he knew and how sorry he was and did his usual, I wish he were here, too. I came home and threw myself into bed for a few hours in the middle of the day and woke up to a pillow soaked with tears that I don’t remember crying, but the black mascara was evidence enough that they had been there. I survived my birthday but birthdays to me will never be the same again as they just make me very, very sad.
After my very unbirthday, I’m not celebrating a thing, I had to get ready for that bitch of a marathon that I said I was running. I didn’t really train at all except if you count going for some runs here and there, training. In my mind, I train for a mother fucking marathon everyday by just doing life. I talked our Bri Bri into doing it with me as well. She didn’t train at all either but I told her at 19 years old, you can do anything in the world, including running 26.2. We got up that morning in preparation for the day. I made us a little food, and we whispered in the dark about how excited we were to run this thing. I took out a Sharpie and did my usual writing of your name everywhere I could. I told Bri I was going to do her arms and she could do mine for a little extra running motivation. I wrote, “Ronan” down one arm and of course “F U CANCER” down the other. I handed her the Sharpie and told her to do my arms next. I looked down at my arms after she was done.
RONAN was written perfectly on my right arm and I looked down at my left arm to see the word, “FUCKER” written in huge, black letters on my left arm.
“BRI! You wrote “Fucker” on my arm!” My whispers were no longer whispers.
“I know!” she said. “I thought that’s what you wrote on my arm!”
“No! I wrote F U CANCER!”
We both were doubled over, laughing hysterically for a good five minutes before we could compose ourselves. There was nothing I could do about it as the sharpie was not coming off and the car that was picking us up to drop us off, had arrived. I decided just to roll with the word FUCKER down my arm and to see what added fun it might bring to the day. Besides, cancer is the biggest fucker anyway.
We got downtown to meet up with my dear childhood friend, Laura who came into to town to run the marathon as she actually trained. I had a sweatshirt on but told her the fucker story anyway to stop her from crying. It is an emotional thing to do a marathon for the first time, and on top of that add the reason that you are doing it is for your childhood besties, dead son… well, game over. Laura was officially a wreck but the fucker story definitely made her laugh and I think she had an even better time, calling me fucker throughout the marathon. So did the spectators on the street. The entire marathon I heard, “GO FUCKER, GO!!!” or “F U CANCER” or “GO RONAN!” as that is what we had on on the back of our shirts. I got asked who you were and I always said, “My son.” I didn’t say, “My son who died of cancer,” because to me that is not who you are and I won’t let that define you. I was doing pretty well in the marathon until about mile 17 and that was pretty much it. I hit that invisible wall that you hear people in the marathon world, talk about. I started walking, grabbed a gatorade that a lady was handing out on the side of the wall and chugged that thing like it was the last drink I was ever going to have. I waited for my friend, Katie to catch up to me where we walked/jogged/begged for the finish line. Bri met back up with me at mile 21 and somehow, we crossed the marathon line together, holding hands. I’ve never been more proud of my sissy in my life. She is such a little badass in training and I am so honored to be showing her the ropes.
I wanted to also take a second on here to thank all of you who supported me in the marathon by donating, volunteering, cheering or running yourselves. It wasn’t just Ronan I thought about while doing this, but you all as well. You kept me going when all I wanted to do was take the short cut, call it a day, and run back to my house. I love you all so much for never giving up on me and for pushing me to do really hard things, just so I can remind myself that I am capable of overcoming all of the odds even on the days were I still do just want to crumble up and die. You remind me to get back up and fight harder than I ever have before. So thank you, from the bottom of my heart for keeping me going as I try my hardest to change this for these other kids who deserve so much better than what they are getting tossed their way.
Oh, back to today and how it was a really, really, really fucking hard day. So hard, that I am too tired to write about it now, Ro baby. It was just one of those days where I really felt like I had the wind knocked out of me because I just miss you so very much. I have to get back to this book writing now. I’ll try to check in with you in a few days.
I miss you. I love you. I hope you are safe. Sweet dreams, baby boy.
Ronan. Yesterday was a shit storm of a day, emotionally wise for me. I think I spent the day crying for almost 24 hours straight. It’s not enough that I have a dead kid, but sometimes I feel like I am supposed to be saving the world, along with everyone else around me. Most days I can handle it, but then after taking on so much, for so long, I will end up cracking. I had a super intense day of missing you yesterday and I just wanted a day where I could sit quietly, miss you and grieve for you, but I had some other things come my way that I needed to try to take care of. I had a day of feeling like I was doing nothing right, I was hurting everyone’s feelings, and all the expectations that people expect from me… well I just cannot not live up to them. I don’t think I’ll ever be able to live up to them. It’s hard for me to maintain relationships where people expect certain things of me. I will eventually let someone down, and I’m really hard on myself about that. It’s a kind of pressure that is just sometimes too much on top of all of this so instead, I just shut down and go away. I am just trying to do my best and I am fully aware that my best is often times, not good enough for others. I am always sorry about that and this is why the people who I am closest to in my life, know not to expect a thing. It’s really the only way I can do friendships now. They expect nothing and go completely bananas when I do rise up to the occasion and my hard work seems to be paying off. Take Stacy for instance. We had a phone call the other day with Bret Michaels assistant to get everything lined up for something we are doing with him. Bret has been so supportive of you and this fight, and I am so thankful for that. About an hour after hanging up the phone, I saw I had a message from Stace. I listened to it and she was going on and on about what amazing things I have done, “I am so proud of you. Look at everything you have done, and you just keep going on with more and more amazing things. Ronan would be so proud of you.” I listened to her message, sobbing of course. Her words meant so much as they always do, but on that day especially as the day seemed to be extra hard for me. Stacy called to let me know how much she loves me, even when I can be bratty/hard to understand/crazy/overly emotional about everything related to you; because that’s what true friends do. They don’t want to tear you down, true friends are there to lift you up, especially in times that seem extra hard. For me, those are most days and Stacy never seems to forget that. I am truly grateful for friends like her.
It feels like a lot of people forget that at the end of the day, despite all the good I am trying to do, I am still just a grieving mom. It’s been hard to navigate the people who have come into my life and I’m suddenly having an identity crisis of being paranoid that I have been used and feeling like people have taken our situation tweaked it to their advantage. When it comes to all things you, your life, your death, and everything that has come after, I am so protective and so sensitive to every little thing. I was driving to the airport to pick up your daddy and I was crying so hard I could barely see the road. I pulled over to take a little break and I also wanted to send CC a little text to check up on her as she was suddenly very on my mind. It turns out she too was having a shit storm of a moment exactly when I texted her. I called her and she picked up, crying too. I couldn’t even talk. “What’s wrong, what’s wrong, what’s wrong! Talk to me!” She yelled into the phone. Talk I did. Or more like the blubbering cry that I have come accustomed to. I could hardly get any of my words out, but she always knows what the huge problem is and why it is that I will forever be crying. I told her what it was that had set me off. I listened to her, listen. She calmed me down, but was still crying herself, therefore, I continued to cry as well. So that’s pretty much what we did on the phone for a good 45 minutes, was talk and cry and talk and cry. I hung up feeling sad for my friend and sad for myself but so thankful to have the friendship that we do. One where she knows I will never judge her and she will never judge me. I think back about going through all of this and the way Charisma treated me. Like her dying little flower that she would let wilt and die, but she would always be there to water it. I think back to the conversations I had with Charisma after you died, Ronan. A lot. They got me through some really dark times. I remember being on the phone with her a lot, always late at night as I would go outside and pace back and forth. “Maya. I didn’t like that last blog post. I’m scared for you. What can I do? Walk me through your head right now.” I would walk her through things and I always appreciated how honest she was with me about how hard this was, to watch me go through. She never whispered about me, she whispered with me. It doesn’t get much truer than that. That is a good soul. That is a good friend. I know she will always be here to whisper in the dark with me, Ronan. I always do this on the phone with her while looking up at the stars wondering if you can see me. Did you see me all those times, pacing like a wild animal, trying to explain to Charisma the method behind my madness? I always felt like you did. How I hope you still do.
We are back in Phoenix. Summer lazy lifestyle is officially over. It was a good summer, but for me, it was a very intense hard summer as well. Some reasons I will disclose. Some reasons I will not. Let’s just say I have been distracted by some very intense things going on inside the cancer world and on a personal level as well. Summer was hard and heavy, but I imagine it always will be. Your Sparkly said it best after listening to all that was going on when he said, “Darling, I’m so sorry you’re dealing with all of this, but you cannot save the world.” I know this be that doesn’t mean I won’t continue to try.
On my last night with your Nana and Papa, I was sitting on the floor with Poppy and we were all kind of watching, “Orange is The New Black,” (my new favorite series that I am NOT embarrassed to say I watched in an 24 hour period) I looked up to see your Nana sitting on the couch and Papa Jim in his chair.
“Hey, do you guys want me to move back in with you?! That would be so fun!”
They both just kind of laughed and Papa Jim said something like, “Oh, yes! Please do!” In his smart-ass voice.
“I really would. You guys are really awesome roommates.”
I don’t think your daddy would be down with that, but the bottom line is, I LOVE BEING HOME. With my family, so much. We are always so well taken care of and loved there. Thanks, Rosa aka, Mom. You are the best mom on the planet and I love you so much. Thanks for ALWAYS loving and never judging. Even when I was at my worst. We miss you and Papa Jim so much already.
Alright, little man. I need to go now. I’ve got another post to post after this, explaining a little about what has been going on in the cancer world that I am just SICKENED over. It’s something we’ve been dealing with for months, but only now am I going to speak very lightly about it. Why can’t people in this world just DO THE RIGHT THING? Especially when it comes to bright minds who are only trying to save the lives of others.
I miss you. I love you. I hope you are safe.
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.
Ronan. I think time is standing still. At least that’s how it feels to me. Maybe it’s because I’m having to take things easy now that your Poppy sister is almost here. Maybe it’s grief. Or a combination of both. I remember things feeling this way right after you passed away for the first 6 months or so. It feels like this once again. I wake up, do the things I need to do, but life feels really empty right now. Nothing feels good. I’m exhausted. I can hardly make it through the day and normal things like keeping up on the laundry, dishes, and feeding your sweet brothers, feels really, really hard. I’m sure this mostly has to do with my pregnancy coming to an end but still, it’s mentally wearing me down. Then there is still the issue with your bedroom. Fucking fuck fuck fuck. I can’t believe it really happened and all of your things are out of there, being cleaned, refinished, your clothes are in bins, your stuffed animals in bags. I still am in shock over it all. I never thought I would let that day happen. Your daddy asked what I wanted to do with the clothes in your closet. I made him leave them there. I still like to touch them and smell them, even though they smell nothing like your sweet little scent. I still take whiffs of them whenever I can, hoping to be reminded of a sweet memory of when they were last worn by you.
I saw Dr. Schwartz today. Everything is progressing well, but I seriously feel like this pregnancy is never going to come to an end. I have it in my head that Poppy is just going to stay inside of me forever as I sometimes still do not think she is real. I honestly don’t think I will fully be able to truly absorb what is happening until I have her in my arms. We talked about everything from Cord Blood Banking, postpartum depression to the whooping-cough vaccine she made your daddy get today. She told us that she doesn’t want anybody around Poppy who has not had the T-dap vaccine as she has been seeing babies die from being exposed. Great. Add that to my list of things to worry about. Liam and Quinn had it with their regular immunizations so they are fine. I had to call your Nana to tell her she needed to get hers before she comes out here. Dr. Schwartz is just being extra careful which is good, but it still makes me nervous. Then there is the whole postpartum depression thing. We sat and had a conversation for a good 20 minutes about this. I told her I honestly wasn’t worried about it. I’ve never had it with my other kids and if I am depressed at all, it’s during this pregnancy -the here and now as being pregnant is keeping me from being able to do everything that helps me not to be depressed/consumed by my grief (which is not depression it’s just grief!) Mainly my exercising. Once your Poppy sister is here, I will be able to start to have my outlets again and they won’t consist of me resting in bed, which I fucking HATE, but instead will consist of going out and doing my hikes/runs/anything to get the adrenaline flowing. She talked about anti depressants. I told her how that’s not happening as I had taken them before and I swear they made me suicidal. How they just seemed to pile on more grief because I wasn’t dealing with anything and I was just numb. I agreed to let your daddy watch out for me though but still, I think I know myself pretty well. We’ll see if I’m eating my words in a few weeks and if so, I’ll deal with it my way. I sent Dr. Jo a text about this later today. We had a very long conversation which left me laughing at the way she got so riled up over the mention of medication/and postpartum depression vs just plain grief. I love her passion so much.We talked about our plan because we do have one. It’s the same one we’ve always followed. When things get more heavy for me, I see Dr. Jo on a more frequent basis and I’m always honest with her about everything I am feeling. We work through it the way it works for me. No fucking meds required. We talked about my sadness though all of this and how I will face it head on. She knows that Poppy is not just going to appear and BAM! all my sadness will be gone. She expects me to feel waves of happiness and waves of sadness with all of this. That’s just the way my life is always now. Poppy won’t fix it all. As Dr. Jo said, “You are not having Poppy to replace Ronan. You are having Poppy because you wanted another baby. But you need to be prepared for the people that are going to come out and act like this she is the answer to all of your sadness. People want her to fix everything and to take this all away from you but that’s not the reality of this. You need to let people know that the birth of this baby girl, does not diminish your pain or your grief. That she does not take Ronan’s place in your family. Ronan’s place is Ronan’s place and he will always be there.” That is our reality. That will always be our reality and nothing will change that. Not even your beautiful baby sister. I know she is going to help with our sadness, Ronan. But our sadness won’t disappear and I am o.k. with that. I am learning every day to just live with it.
Your daddy has been the one working in your room. I can’t bring myself to do a thing. Thank you for him. I honestly don’t know what I would do without that amazing daddy of yours. I always knew I was so lucky to have him, but going through something like this really makes me realize it that much more. He truly is unlike any other man on this planet. He has taken such good care of all of us in every way since losing you. I know it’s a big reason our family seems to be doing o.k. To have such a strong loving man to hold us all up, makes all the difference in the world. I can’t imagine where our family would be without your daddy. Every single night he talks to you out loud before he goes to bed. It mostly breaks my heart to listen to his words and I often times pretend like I am sleeping because what he says, usually makes me cry. Sometimes I don’t want to listen to what he is saying, because him telling you good night and how much he misses you, leaves me with a pit in my stomach that I will never get used to. I always appreciate this though even though it is so hard for me to hear. He went to a concert tonight. He’s been going to a lot of these things lately. I always encourage it. I will always be the wife that says, “Please, go. Have fun.” I will never be the wife that bitches or complains that he does these things. He deserves the break. He deserves to blow off some steam. He works so hard and takes such good care of us that I am always supportive of your daddy going out and having some fun. It makes me happy to see him doing these things. He is so ridiculously excited for your sister to be here. I cannot wait to see what it’s like for him to have a baby girl. I know it is just going to melt my heart. What a lucky little girl to have a daddy like him. It will be such a beautiful thing for our family.
I made your brothers dinner tonight. I cooked a really great brisket for Passover and talked to your brothers all about this holiday and what it means. It’s is important to me that they know about all religions, not just one or none. I want to teach them about EVERYTHING. I want them to have an open mind and be educated about it all. It was a fun little bonding time tonight where we talked about everything from sports to religion to marriage equality for all. Yes. I talk to my twins about this. I am proud to say that I do as I cannot believe this is even an issue in this day and age. Don’t we have bigger fish to fry? Why in the world do I care if my neighbor Bob marries Joe down the street? I don’t. People should be allowed to love who they love, end of story. My boys will grow up knowing this. It’s not our job to judge others or tell others what is right or wrong. It’s not hurting my family, affecting my marriage so GEEZ! Can we please just stop all this madness?! KIDS ARE DYING PEOPLE! Left and right kids are dying from a little thing called cancer yet nobody seems up in arms over this. That to me is pure insanity. People need to get a life and focus on what is really important in the world and it is not over who your neighbor, loves and wants to marry. The ignorance around this is shameful and embarrassing and enough is enough. I have 2 things I am really passionate about in life. 1) Childhood Cancer and 2) Equal rights for all. I won’t ever shut up or shy away from those two things. I was lucky enough in life to have parents who taught me to have an open mind at such an early age and who welcomed a very gay, black man into our world who we loved like our family and whom I was taught was no different from us. I will forever be grateful for my parents for this lesson in life. I will forever be grateful for my parents who let a little girl love a man for who he was, not who society defined him as being. I am a better person for this and my twins will be, too. I would have given ANYTHING for Ronan to grow up and be gay. Or straight. Who cares. At least he would have freaking had the chance to grow up and not die from cancer! Seriously. Where are our priorities?
Alright little man. I’m going to get off my soap box for tonight. I miss you. I love you. I hope you are safe. Please keep your Poppy sister safe. It won’t be much longer now. I love you.
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.
Ronan. It’s official. For as much as I don’t want to slow down, I have to slow down. My body is screaming at me with everything it has to just stop. I have never been more bloody exhausted in my life. Your sister is so heavy that even just walking around trying to do normal things leaves me breathless and feeling like I want to fall over. Not cool. This is not how I roll. I am glad I crammed in every last thing I could before this hit me such as my little New York trip, foundation things, appointment things, etc… There is no way I could have gone to New York now. I can hardly get out of bed to tackle our laundry situation over here or keep up with the cooking/taking care of your brothers. All my body wants to do is rest/sleep. Otherwise known as my personal hell.
I spent the weekend taking it easy. I’ve had a bad cold to go along with this pregnancy that has wiped me out even more. I know this is just another way my body is telling me enough is enough. Your Papa Jim has been in town since Friday. He’s been sleeping in your room which you know always brings me comfort. Just the thought of knowing somebody is in your little room, brings me a sense of peace. I love it even more when I catch your brothers playing in there, with all of your Star Wars toys. They are still young enough to enjoy them every once in a while. I spent all day Saturday at my happy place, otherwise known as your brothers basketball games. They had games starting at 8 a.m. back to back to back. I felt like crap but there was no way I was going to miss their games. One of my favorite things in life now is watching those two play basketball. You would be so proud of them and how well they are doing, Ronan. Your two brothers constantly leave me amazed. They are such good sweet souls, even after all of this. I am so lucky to have them.
One of the things I did with Dr. Jo on Friday was go over our timeline that we sat together and wrote out about a year ago. It started from your diagnoses and ended the morning you died. You know I don’t have much of a memory of anything and one of the things I really struggle with is regret. She asked me to change anything I wanted to in regards to things I would have done differently with you and your treatment. Of course I changed things. A lot of things. I would actually like to change almost everything because what if by changing one little thing, your outcome would have been different? We will never know this. Your daddy still swears to me that your disease was so aggressive that it wouldn’t have mattered. It matters to me and I don’t know that I will ever be able to forgive myself, Ronan. I don’t care if at the end of the day, you would have died no matter what we did. I will forever hold on to you were my child and I should have been able to protect you and save you from anything and everything. Even stupid fucking cancer.
The first thing I told Dr. Jo I would change was I wouldn’t have had you die at all. Obviously. If only it were that easy, right? We then moved on and went over the doctors, hospitals, treatments and ended all things at the Ryan House. I sat there and sobbed while talking about this and told her I wish I would have never taken you there. Looking back now, I understand it was what we needed to do, to get your pain under control because feeding you morphine every hour on the hour was just not cutting it. But that little voice in my head will always go to the very painful place of at the end of the day, after everything you went through, you just wanted to be at home, in your house and I should have listened to you and not everyone else. It’s the least I could have done as your mama. I know a big part of not having you die at home was to protect Liam and Quinn, but I really don’t think having you here, would have hurt them as much as we thought it would have. They were with us when you died, it just happened to be at some strange place that it all happened. They will always have that memory of you there and I don’t think having you away, out of our house, will make that memory any better for them. How could anything possibly make the memory of their little brother, the most precious thing on earth to them dying, any better? I told Dr. Jo how I vaguely remember hospice meeting us at the airport after we had returned back from Philadelphia when we were told there was nothing else that could be done for you. How I had a stranger riding in our car with us and I remember being so angry because I felt like I had no control over anything and now there was a stranger riding in my car with us whom I had never even seen let alone talked to in my life. I remember hospice coming to our house and I told your daddy to get them out. End of story. I didn’t care who they were or why they were here, all I knew was that nobody really explained anything to me at all but I was just expected to understand everything that was happening. I told Dr. Jo I wish it had been her with me at this time. Because I know Dr. Jo. I know she knows better than anyone how to handle this very delicate situation. She would have done things in such a way that I would have been open to her. She would have had the decency to gently first of all, ASK me if it would be alright for her to be with us, to help us with anything that we might need or not understand. She would have ASKED to meet you and not just pretended like you were a baby who was already dead. She would have cried with me and understood my pain in only a way that a mother whom has also lost a child, can do so. Her expertise on all of this would not just come from a book or a class she took. It comes from so much more than that and I know I would have been able to feel all of that. I wished it would have been her, sitting with me, helping me, explaining to me everything that was happening/ going to happen. I wish it would have been her that would have told me I could have spent as much time with you as I wanted to after you died. That there was no rush to have your little body placed in a bag and wheeled away, never to be seen again. I wish it would have been her to have sat and wept with me, held me and helped me find my way back out into this bright, bright world in her oh so gentle way. It certainly would not have been her saying, “See you later, have a great summer,” never to really be checked on again. I wish I would have found Dr. Jo before you died. It did not happen this way, Ronan and because of this, I know one thing for sure. Dr. Jo could not be with me for your death but she will be with me for the birth of your baby sister. I’ve been thinking about this for a long time. I’ve talked to your daddy about it. Our conversation was brief and simple. I was laying in bed, crying I think.
Me: “Woody. I need to ask you something.”
Me: “I want Jo in the room with us when Poppy is born.”
Him: “Why? You are always so calm and you always do great.”
Me: (trying not to get frustrated because I don’t think your daddy understands the depth of this for me, having another child after having a dead child and how mentally hard this is) “I have always done great when I didn’t have a dead child. This is completely different now.”
And then I just said it, plain as can be.
“Because I’m scared.”
Him: “O.k. whatever you want.”
Me: “Thank you.”
I called Dr. Jo today. I asked her. She started crying on the phone. She said she would be honored. I told her thank you. That I don’t know if I can do this without her. She went on and on about how if I change my mind at any point, she will totally understand. I said I knew that. As of now, this is my plan. Did I also mention that Dr. Jo is a doula? Kick ass, Dr. Jo. I see this as a win/win. Not only is she here to help me with death, but also with life. She has been my lifeline through all of this, Ronan. I only wish there were 500 more of her to go around to help all the parents out there, dealing with the loss of a child. Nobody gets this the way she does. She has such a gift that is beyond this world.
It takes a lot for me to feel scared in this world anymore. I am scared for the birth of your sister. The range of emotions I am feeling come with such an overwhelming feeling of sadness and happiness and I know I need her to help me through this. I know when I need to ask for help and I need help with this from both you and her. I know with the two of you things will be a little less scary. In my heart of hearts, I know you are going to make sure Poppy gets here safe and sound. I will always trust in you and the way you are guiding me. I think you want Dr. Jo in the room with me just as much as I do. She should have known you, but since she didn’t she will know about you through the eyes of your brothers, the tears in my eyes, and the birth of your baby sister. Such a beautiful gift she is going to be, Ronan. Thank you for her.
I miss you. I love you. I hope you are safe. Sweet dreams, little man.
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.
Ronan. I had no idea getting 25k signatures on our petition was going to be so hard. I mean, it shouldn’t be, right? It seriously is something that takes 60 seconds. I have been working non-stop on this and I know a ton of other people have as well. Again, thank you to all who have signed and who are harassing everyone they know about it. This has to work. It is time The White House steps up and starts to recognize Childhood Cancer. It should have happened a long time ago. I’m still blown away that the awareness has slipped through the cracks. Did you know that George Bush Senior, had a daughter that died from leukemia? I believe she was almost 4, just like you Ronan, when she died. Heartbreaking, right? Heartbreaking, but you would think from that, something fucking amazing would have been done, that would have put childhood cancer on the map where it does not get ignored. We had not one, but two President Bushes that could have done something huge, but as far as I can tell, not much was done. So here we sit now, begging for a petition to get the signatures it needs in hopes that The White House will say a BIG, FAT, YES to lighting that White House up GOLD for the month of September. This is not something we should have to beg for. I begged for the life of you, Ronan. Begging for signatures just seems silly, but as I said before, I will do whatever it takes.
I really hope President Obama, takes a stand on this. I really hope the First Lady decides to get involved because trust me, kids are not dying left and right due to childhood obesity. Do kids with childhood obesity have to go through harsh chemo treatments meant for adults? No, they do not. Kids that are diagnosed with cancer get to not only go through awful chemo, but these lovely things as well… Let’s add scary radiation to the list where they are left in a tube, all alone, not understanding a thing. Also, extreme fatigue where they no longer get to be a child. Constant flu-like symptoms such as runny noses, chills, and coughs. Pain that they cannot fix such as headaches, muscle pain, stomach pains, or even temporary nerve damage. Pokes, prods, riding an IV pole around a hospital instead of a bicycle. Mouth, gum and throat sores. Nausea, vomiting, loss of appetite, constipation, diarrhea, bloody noses that cannot be controlled due their platelets being wiped out. Skin changes such as blisters, peeling, and swelling. Feeding tubes. Weight loss or gain. Lovely hair loss which leaves them to feel weird and different from everyone else around them. Kidney and bladder problems. Anemia, which destroys all types of healthy blood cells and leaves the child often pale, speeds up their heartbeat, and shortness of breath. Blood Clotting problems where everything bleeds non-stop including a small scratch or bloody gums when they brush their teeth. Neutropenia, which leaves the child with an immune system so shot, that they often cannot fight off infections. Let’s not forget all the surgeries that come into play. Stem cell transplants, bone marrow transplants, bone marrow aspirations, the awful port changes, nightly shots to boost their immune system. The endless amount tears, worries, and pain. And those are just the physical symptoms. Don’t forget all the psychological damage that is done as well. Not to mention being torn away from their siblings, parents, friends, and the extreme stress it adds to the family who have no choice but to put on a strong face when all they really want to do is crumble up and die.
Sometimes, cancer treatments can cause permanent changes to a child’s growing body. These long-term side effects can include damage to the heart, lungs, brain, nerves, kidneys, thyroid gland, or reproductive organs. Kids may experience issues such as delayed cognitive development, growth problems, and infertility. In some cases, those who’ve received certain types of chemotherapy are at higher risk of developing a second type of cancer later in life. Let’s not forget that every single day, 7 kids just up and die from childhood cancer and every single day 46 kids will be diagnosed. Let’s not forget, that this could happen to anyone and childhood cancer is the NUMBER ONE DISEASE KILLER IN KIDS. But I totally understand why we have taken such a stance on childhood obesity.
So, here I am, begging for signatures for a petition that I don’t even know The White House will say yes to. Here I sit, with tears streaming down my face not ONLY for the loss of you, but of so many others as well. All I am asking for is for childhood cancer to be as recognized as all the other cancers out there. All I am asking for is for the color GOLD to be as recognized as the color PINK. Just make it equal. Why isn’t it already? These are kids for crying out loud! They should not be thrown into a life of being “fighters,” because nobody is fighting for them.
| NATIONAL CHILDHOOD CANCER AWARENESS MONTH, 2012
BY THE PRESIDENT OF THE UNITED STATES OF AMERICA
Every year, thousands of children across America are diagnosed with cancer an often life threatening illness that remains the leading cause of death by disease for children under the age of 15. The causes of pediatric cancer are still largely unknown, and though new discoveries are resulting in new treatments, this heartbreaking disease continues to scar families and communities in ways that may never fully heal. This month, we remember the young lives taken too soon, stand with the families facing childhood cancer today, and rededicate ourselves to combating this terrible illness.
While much remains to be done, our Nation has come far in the fight to understand, treat, and control childhood cancer. Thanks to ongoing advances in research and treatment, the 5 year survival rate for all childhood cancers has climbed from less than 50 percent to 80 percent over the past several decades. Researchers around the world continue to pioneer new therapies and explore the root causes of the disease, driving progress that could reveal cures or improved outcomes for patients. But despite the gains we have made, help still does not come soon enough for many of our sons and daughters, and too many families suffer pain and devastating loss.
My Administration will continue to support families battling pediatric cancer and work to ease the burdens they face. Under the Affordable Care Act, insurance companies can no longer deny health coverage to children because of pre existing conditions, including cancer, nor can they drop coverage because a child is diagnosed with cancer. The law also bans insurers from placing a lifetime dollar limit on the amount of coverage they provide, giving families peace of mind that their coverage will be there when they need it most. And as we work to ensure all Americans have access to affordable health care, my Administration will continue to invest in the cutting edge cancer research that paves the way for tomorrow’s breakthroughs.
This month, we pay tribute to the families, friends, professionals, and communities who lend their strength to children fighting pediatric cancer. May their courage and commitment continue to move us toward new cures, healthier outcomes, and a brighter future for America’s youth.
NOW, THEREFORE, I, BARACK OBAMA, President of the United States of America, by virtue of the authority vested in me by the Constitution and the laws of the United States, do hereby proclaim September 2012 as National Childhood Cancer Awareness Month. I encourage all Americans to join me in reaffirming our commitment to fighting childhood cancer.
IN WITNESS WHEREOF, I have hereunto set my hand this thirty first day of August, in the year of our Lord two thousand twelve, and of the Independence of the United States of America the two hundred and thirty-seventh.
Please, President Barack Obama, stay true to your words. Please fight this fight with us. A change cannot happen without you. Please do so much more than just some words on a piece of paper.
Ronan. I love you. I miss you with every aching bone in my body. I am so sorry this is not fixed already. I am so sorry you had to die from something that is so awful and continues to be ignored. I promise to fix this for you. I promise to never stop fighting for you. I love you with everything that I am. Forever.
I won’t stop posting this petition until it gets the 25k signatures that it needs. This is our only chance. If we don’t get this passed this time, the required signatures goes up to 100k. This is not just another thing of spam that comes your way. Signing this can help this cause. Please. I will do anything. I will shave my fucking head. I will eat worms. I will stand on a street corner and whore myself out, but I don’t think my husband would like that very much. I will jump out of a plane but for those of you that know me, you know I would do that for fun, anyway. Oh, and plane jumping might be off-limits for now due to the safety of Poppy a.k.a. Little PopStar.
Please, just sign and share. Go to your local news stations. Beg with no shame, just like the way I am. Or do the complete opposite. Read this, do nothing, and go about your self-absorbed ways. I have enough tears, that I can spare them to cry for you as well.
I know this picture is hard to look at. But imagine how it felt for him and for us, as his parents. He was 3 years old. The fact that nothing has changed for childhood cancer is unacceptable. The fact that he had to go through all of this as so many others are and will, is something I will not stand for. Please do not just go about your day. Please help us do something. I am not going to stop fighting for my child, ever. He is worth every painful thing I feel, think or see. He is worth all of this pain and suffering. It reminds me of why I cannot give up. I will not curl up and die or go on with my life ever. He is my life.
Ronan. I knew yesterday, that I was not going to get out of bed. I got up, showered, took your brothers to school and acted like the happy mama they deserve to love and see. I came back home and sank back into my bed for the rest of the day. I spent the morning and afternoon, throwing up. I don’t think this is much of a Poppy thing anymore. But just the way my body reacts to all of this grief that I carry around with me 24/7. My heart was too heavy for you and Teddy, to do much else so I didn’t. Then I turned on the T.V. just in time to hear about the shooting in Newton, CT. I sat back and watched with horror on my face as the numbers of the kids shot and killed, continued to rise. I hid in my bed. I sobbed in my bed. I told you this world was too awful to continue to live in. All I could think about was those innocent babies, who will never have a future. Just like the thousands of innocent babies who die of cancer every year. What happened yesterday was the most senseless act of violence I’ve ever heard of in my life and my heart is absolutely broken for the families who are left here to try to go on and live, without their children.
Facebook yesterday was full of people shouting their political opinions. I read everything from the reason this happened was because we need stricter gun laws in this country (which I do agree with but that is not going to fix the problem) to it’s because we have taken God out of our schools… (ugh, really?) To it was because the kid was autistic (shut the fuck up). This did not just happen for one reason. It is combination of things that seem to be wrong in our country. You cannot just point your finger at one thing. Clearly this kid had some kind of mental illness and was not getting the proper treatment. Hey! Here’s an idea! Let’s stop throwing so much money at things like war, welfare, and NASA and maybe focus on the things here that really need to be focused on like the well being of people who have an illness down here and really need to be treated, helped, or nurtured. Let’s do whatever it takes to help the person in need instead of ignoring them.
It also seemed that every single person on Facebook was saying things like, “Praying for the families !” Or “hugging my babies extra tight today!” Let me tell you 2 things. The first being, prayers for as nice as they are, are NOT going to change things. Are they going to bring back the dead child? Ummm… no. Are they going to help put an end to this insane violence that seems to keep continuing to happen over and over again? No. I wish it were that simple, but it’s not. I know this first hand. Things do not get done by sitting back and praying and doing nothing else. Change does not happen that way. Change happens by working your ass off. Things only get done by being vocal, taking risks, taking ideas and no matter how many times you hear the word, no, you DON’T accept it as an answer. You keep fighting for the change you want to see happen. You fight with everything you have until finally you start to see things move in the direction you want. Trust me. The things that have happened in my life, since Ronan died, have not been because I have sat back, prayed for it and done nothing else. I work my fucking ass off every single day because I know if I really want to change things, it takes a lot of hard work. It does not happen by me being huddled in a corner, praying for cancer to be cured. If it were that fucking simple, my child would not be dead. The second thing here kills me. It kills me everyday that it takes a tragedy like yesterday to remind us that we need to hug our children more tightly everyday. Why are we not hugging our kids extra tight, every single day? From the second my kids were born, I knew they were an absolute gift that I treasured every single day. From the second Ronan was born, I was constantly telling myself how lucky I was to have him and that every single day with him, felt like Christmas only 1,000 better. I have pages and pages in journals I used to write in just months after Ronan was born where all I did was talk about how amazing he was, how much I loved him, how he made our family so perfect. I knew every single day, that I was so lucky to have him for the time that I did. Looking back now, I can tell you all that I knew deep down, that Ronan was not going to be here forever. Going back now, and reading the things that I wrote about him in his very early years of life, I knew. This is one of the reasons the bond and connection I have with him is so deep. I never took a second of that child’s life for granted. I hugged him and all of my kids, extra tight every single day. Since losing Ronan, I know there have been times that I haven’t hugged Liam and Quinn as tightly as I should be doing so. But my hugs sometimes come in other ways such as getting out of bed and packing their lunches for school. And I always make sure to tell them how much I love them, every single day because I know there is no guarantee in life that I am going to have them forever.
I don’t want to get to political or preachy about all of this because the bottom line is kids are dying left and right every single day whether it be from a senseless act of insanity, cancer or something else. When you become a parent you take that chance in life that you may not have your child forever. I used to be one of the lucky ones who did. And now that I am not, you can be damn sure I am not going to sit back and pray about it while doing nothing else. I am going to change the very fucked world of childhood cancer by being an activist and using my pain for motivation. I am going to fight for my child for the rest of my life because he should still be here. My child is dead due to the lack of funding and attention that childhood cancer receives. Because too many people choose to ignore it and not make it a priority (hello lovely government). Well, that is fucked. That is just as fucked as some person who quite clearly needed mental help going in and shooting all of those innocent kids. So, people of the world. If you are so upset about any of this, then get off your asses and really do something about it! If you are so worried about the safety of your kids, take some sort of action instead of just waiting for someone else or something else, to do it for you. Say your prayers, but then be proactive and DO SOMETHING! I pray all of the time(to Ronan). I pray and talk to him, 24 hours a day. I let him give the me strength to do everything in my life and push me forward. I do not sit back, pray to Ronan, and then do nothing, expecting a miracle to happen. I pray to him while doing a lot of things, too. The power of those two things, gets me through my days. Those two things, are very powerful if I sit back and do them together. I just wish I would see more people praying in the world AND actually doing something as well. It has to start being a combination of the two things. It has to be a combination of your faith and your fight in order for things in this world to change.
And for all of you yesterday, still posting status updates all over Facebook like, “So sorry for all of those kids. Hugging my kids extra tight today!” And then 2 hours later, the same people are posting other updates such as, “GOD! My kids are driving me insane and the Nanny just canceled! How am I supposed to finish my Christmas shopping now?!?!” Fuck you. Fuck you from the bottom of my very broken heart and fuck you for not having any self awareness at all. Some of us would give anything to have our kids here, driving us insane, while knowing that Christmas shopping is the last thing in the world that matters.
My heart goes out to the parents last night who had to go to sleep without their children. I know what that feels like every single night, since being without you, Ronan. It is a pain I would wish on no one. I am so sorry to those kids, their families and every single person who loved and cared for them. I am so sorry for the sweet teachers lives that were taken as well. School is supposed to be the safest place for our kids to be. It is very apparent that there are many things broken that need to be fixed in order for things like this to stop happening. It is very apparent to me that it is not just one problem, but many. I hope we can get this figured out quickly, other wise I fear this will not stop. And my kids may be next. I am not naive to the world of tragedy. I know this could have been my kids, yesterday. I stopped living in a bubble a long time ago.
I miss you. I love you. I hope you are safe. Thank you for visiting me in my dreams last night. Your head was bald but the way you ran into my arms was so real, it was almost like you were here again. I even remember being able to smell you. And you still had your squeaky little voice. What did you say to me, baby boy? Oh yes, I remember. “It’s just me and you, baby.” Forever and always. Me and you.