This book on the brain…

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Just wanted to check in. I’ve been writing, just not on this blog. I’ll update soon but between foundation things, Poppy things, the twins being home for summer, traveling, and working on this book, things have been a little crazy.

I miss you all. Missing my Ro most of all, always. I’m working hard to make my little man proud. Here are some new pics of Poppy. She is still the sweetest little thing and we are enjoying her so much. Hope you all are having a great summer! Love you much!

xx

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

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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.

Baseball, Brisket and Marriage Equality for all!

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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.

xoxo

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Run Like A Rockstar!

 

 

 

The Ronan Thompson Foundation is one of the official charities for the P.F. Changs Marathon in Phoenix, Arizona. Do you want to run for a great cause? All the information you need to sign up is below, just click on the link. I know you have it in you! If kids can fight cancer, anyone can run a half or full marathon! So get after it, peeps!

xoxo

http://www.theronanthompsonfoundation.com/node/257

Katie Couric Tomorrow!

 

 

I hope you all can watch. The show that Woody and I taped, will air tomorrow. Also, be sure to tune in on Friday as well for the amazingness of Taylor! Thank you!

xxoo

“From what I can see here, it looks like you are having a baby…”

Ronan. Today, was not a day I expected at all. I had an early appointment at The Fetal&Women’s Center of Arizona. I had to take your brothers because the appointment was so early. Mandy Bee offered to come and sit with them while I went back for my appointment. As we were sitting there waiting, Mandy goes, “You know you can find out the sex of the baby here, right?” I told her I wasn’t aware of that as I thought I had to wait until I saw my OBGYN in a couple more weeks. She told me how she found out at 12 weeks here with both of her boys. I am further along than that, but not much. As soon as my name was called, I got up and asked if it was o.k. if everybody came back in the room with me. The sweet lady told me it was. Your brothers sat playing on their iPads and I was on the table, getting my little belly lubed up. Pretty soon, Poppy was on the big screen. My heart started pounding. So loudly I was sure that everyone in the room was going to hear it. The lady started measuring some things. Mandy chirped up, “Can you tell the sex of the baby today?” The technician told her she indeed could. She asked me if I would like to know. I said, “Sure!” Of course you know I am so impatient when it comes to all things being pregnant. She put the little wand over my belly. I felt myself panic. Oh god. Ronan really wanted a girl. Please. I really wanted a girl. For as much as I can say all I care about is a healthy baby, the truth is, a little girl would mean so much mainly for the fact that you wanted a baby sister. The picture came on the screen. I heard her say it was a boy, before she said anything at all. “From what I can see here, it looks like you are having a baby girl.” “Really? Are you sure?” The technician told me she was about 90% sure. I could not believe my ears. I started bawling, tears falling everywhere. Mandy came over and grabbed my head and kissed the top of it. I buried my head in her shoulder trying to control myself. It was no use. Mascara and snot everywhere. I don’t think I have stopped crying, the entire day. Quinn was over the moon. Liam chirped up that there was a 10% chance that is was not a girl. So typical. So funny. I tried to call your daddy. He didn’t answer. I had Quinn call your Nana. She thought we were all lying to her. No way could it really be a girl.

I finally got your daddy on the phone. As much as I hated to tell him this on the phone because he is in Vegas, there was NO way I couldn’t tell him. “Guess what?” I said, tears still falling everywhere. Your daddy never knows what he’s going to get with me. It could have been everything from “I’m leaving for Tibet to I bought a dog.” I think he was really relieved when he heard me say, “We’re having a baby girl.” He was so happy. He said he knew it. I think deep down, I knew it too, but the confirmation was nice today. I spent the rest of the morning calling and texting our closest peeps. Fernanda. Stacy. Becca. Macy. Liz. Dr. Jo. Melissa. Gay. Tricia. Danielle. Marisa. Carolyn. Charisma. Kass. Rach. Robyn. Rissy Girl. Katie. Meg. Our Fairy RoMo. It is her birthday today. Can you believe that shit?! I found out on her birthday, which was not planned at all! This appointment just happened to fall on her birthday! Talk about another huge sign! There was one person I had not told yet. Your Sparkly. He is the last person I told today. This was not something I was going to tell him over the phone. I had to tell him I was pregnant with this baby, over the phone. I NEVER get to make him smile with happy news, because all the news I sit and share with him is usually so fucking sad or me venting. I sent him a text. “Where are you?” He responded with “In a meeting. Are you o.k.?” I said I was o.k. That I needed to see him today. “I’ll see you in 20 minutes. Come to my office.” I met him there. I was in the middle of sending an email when he came down to get me. I didn’t see him walk up, I only heard him barking some smart ass remark to me, like he always does. He sat down. I told him to hang on, that if I didn’t send this email, I would forget to do it.” He sat. I kind of crawled over to him and gave him a big hug. He laughed at that. “What’s going on? You look pretty today. You know what the baby is, don’t you.” I smiled. “Yup. It’s a baby girl.” I watched his eyes light up in a way that his often do, when he is truly happy. I was so glad I got to tell him my news in person. “I knew you were having a baby girl. I told you that. Ahhhh! You with a baby girl. Finally, someone you can do all those girly things with that you love doing. You two are going to be something else.” I laughed and talked about you a little bit. How much you wanted a baby sister. I am still trying to absorb this all. I cannot believe all the little blessings you are putting in our lives. I left your Sparkly and as I got in the car, I sent him a quick text. “You are going to make the best grand poppy ever. She is so lucky to have you.” He responded back with a simple, “I will.” I said, “I know. Thank you.”

The rest of my day, played out in a way that I don’t think I can take much more. I got a text from Carolyn saying to call her that she had some news. I, of course went to, “Oh fuck. It’s got to be something bad, because too many good things are happening lately.” I texted her back, “Is it good news or bad news?” I was expecting the bad from my friend and foundation president. She responded with, “It might just be the BEST news ever.” I called her. I did not think anything else could happen today, that would leave me speechless. I was wrong. Tears all over. As of now, I can’t talk about our news. All I can say is I cannot believe all of this. I am overwhelmed. I am floored. I cannot believe how truly hard you are working, Ronan. I have never believed in something more in my life, then you. You are making so many amazing things happen. I ended the day with Stacy at Fernanda’s house. I told her the Carolyn news. She could not believe it. A baby girl and now this?! She looked at me and said, “How are you not so overwhelmed?! Aye! Maya! You know this is all Ronan. You know that you could have been in bed for the past year, and we would have all been o.k. with that. Because that would have been totally acceptable! But you chose not to do that, and look at everything is happening.!” I started to cry. I said I knew. I knew but I also knew from day one, that I couldn’t do that. I have to make you proud, Ronan. Lying in bed for the past year, would not have made you proud. But I appreciated Fernanda saying that. I know she meant it because she is such a true friend like that. All of my friends are. I am so lucky to have them all. They stuck by me during my darkest of days. Even on my darkest of days, when nobody knew what to do with me, they stood by me. They didn’t judge me. They may have gently slapped me here and there, but they didn’t talk ill or abandon me or whisper behind my back. This is why they are still in my life. Because they never gave up on the you and me part of this. They just let me be, trusting in me to come around when I needed to come around. For that, I will forever be so thankful. For that, they will forever be my sisters. This baby girl, is going to have so many beautiful aunties. With you watching over her, with a daddy like yours, and your big brothers, too. This baby girl is going to be the most loved little baby girl in the world. Thank you, Ronan. I so badly wish you were here. More than anything. She will be a part of you and I cannot wait to meet her. Please make her extra extra spicy.

Today, was a really happy day full of never-ending tears. Tears of both happiness and sadness. Today, my tears were more happy. I’m soaking that up, because it doesn’t happen often. I miss you so much. I love you so much. I hope you are safe. Please keep this baby girl safe for me, Ronan. I know you will.

xoxo

Happiest Birthday ever to our Fairy RoMo. You are pure magic and are totally going to make the best fucking godmother ever. Poppy is so lucky. We all are. I love you.

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Thank you, Tara from The New York Times. She did a great job and was so thoughtful, kind, and respectful.

 

 

 

http://well.blogs.nytimes.com/2012/09/17/a-childs-cancer-story-inspires-taylor-swift/?smid=fb-share

Dear Ronan, I’m freaking tired. Too tired to even name this post tonight.

Ronan. It is amazing to me, that because of one girl, the entire world seems to know your name now. I am getting so many emails, blog comments, phone calls, and all I am hearing is how much people are inspired by you. How better the world is going to be, because of you. I am trying my best to keep up on everything but today, I made myself stay inside of our house so I could try to get caught up on some things. I didn’t happen. I am so beyond beat that I am thinking I may have a baby vampire growing inside of my belly, because it is literally sucking the life out of me. I’m not used to this. I don’t do well with anything that slows me down and I am having a hard time just letting myself be with all of this. I’m not going to lie. I am scared about this new baby. I worry a lot about not feeling attached to it yet. I think that is normal, after you go through such a heavy loss. But this being pregnant thing only seems to make me miss you more and more. My heart feels a thousand times more heavy then it has in a very long time. Part of this doesn’t even feel real to me yet. And then there is that part of me that still thinks this baby is just going to die, because I know that can happen. I am trying to stay calm and relaxed, but I am consumed with constant worry and sadness. I worry about things like, what if I don’t love this baby, as much as I love you? Is that awful to say? It sounds awful. But in my mind, I cannot imagine loving something as much as you. As of now, anyway. I worry that I won’t be able to be a good mom anymore, because I am so sad. I am trying so hard with Liam and Quinn, but it doesn’t come as easily to me as it used to. I think that is still the grief part of all of this.

Somebody said to me, “You are famous now.” I just replied with a simple, “No I’m not. I’m just a sad mom who lost who son and who would do anything to have him back. I almost threw up at that famous word. Famous because my son died and some beautiful girl wrote a song about him? No. Not famous. Just a mom who is in a very sad world now and someone very sweet decided to do something very beautiful because she has such a wonderful heart. I’m not sure quite what to do with all this attention. I just want it to all go to the awareness that childhood cancer needs, deserves and wants. I want our story to inspire kids to become doctors, who will do everything they can, to change the awful statistics, outcomes and treatments of childhood cancer. I want our story to inspire nurses to go into pediatric oncology, because these kids deserve to have the best people taking care of them with the biggest hearts. I want our story to inspire people to become child life specialists who really will make a difference in bringing a smile to a child’s face. I want our story to impact people in such a way that they follow their hearts and listen to their dreams no matter how many people try to stop them or hold them back. I want all this “fame,” to go to where it deserves to go to. To the real heroes of this story, the kids battling cancer. That is what I want. This spotlight is not for me, but them. This scary world where childhood cancer gets such little support and funding. Childhood Cancer is the number one disease killer in children. I know this the hard way. I am reminded of this every second of every single day. This HAS to change for these other kids. Why is it acceptable that we are just throwing away our future? You would have grown up to be something so amazing, Ronan. I just know this. But now, I’ll never get to see this. I will never get over this or “get better,” from this. You don’t get better from losing a child. You learn to live with it and fight on because you are left here to change this for others.

  • Nationally, childhood cancer is 20x more prevalent than pediatric AIDS.
  • Pediatric AIDS receives 4x the funding that childhood cancer receives.
  • In one month there are 2x as many deaths from childhood cancer as pediatric AIDS for the entire year.
  • In the U.S. almost 3,000 children do not survive cancer each year.
  • Over the past 20 years, only TWO new cancer drug has been approved for pediatric use – Clofarabine (Clolar-Genzyme) in 2004 for ALL and Tenoposide (Vumar/VM-26-BMS) in 1990.
  • Only 3% of the National Cancer Institute Budget goes toward Pediatric Cancer Research.
  • September is Pediatric Cancer Awareness Month, which nationally goes unrecognized.
  • The federal government recently cut the budget for Childhood Cancer Research.
  • Currently there are between 30 – 40,000 children undergoing cancer treatment in the U.S.
  • Young patients often have a more advanced stage of cancer when first diagnosed. Approximately 20% of adults with cancer show evidence the disease has spread, yet almost 80% of children show that the cancer has spread at diagnosis.
  • Today, up to 75% of the children with cancer can be cured, yet some forms of childhood cancer have proven so resistant to treatment that, in spite of research, a cure is illusive.
  • As a nation, we spend over $14 BILLION per year on the space program, but only $35 million on Childhood Cancer Research each year.
  • There are 15 children diagnosed with cancer for every one child diagnosed with pediatric AIDS. Yet, the U.S. invests approximately $595,000 for research per victim of pediatric AIDS and only $20,000 for each victim of childhood cancer.
  • The National Cancer Institute’s (NCI) federal budget for 2003 was $4.6 billion. Of that, breast cancer received 12%, prostate cancer received 7%, and all 12 major groups of pediatric cancers combined received less than 3%.
  • Research funds are scarce as most money is diverted to well-publicized adult forms of cancer, such as breast and prostate.
  • In 2005, the American Cancer Society provided only 2.5% of funded grants, or 1.85% of dollars spent on research to pediatric cancer

If somebody had changed these things years ago, you may still be here. Now you are not here, and it’s my job to help do this so maybe someday another little boy or girl does not have to die from Neuroblastoma. Maybe if this disease gets the attention it deserves, breakthroughs will be made and the odds will not be stacked against these kids. That’s my hope for all of this anyway. I am moving forward with my plan. It’s a big one and if I actually sat down to think about my dream and what it is, I’m wanting to do… it might scare the shit out of me. Unfortunately, I don’t have time to sit down and be scared or worried that I am taking too much on because kids are dying left and right. That is unfucking acceptable. You died. That is the most unfuckingacceptable thing of all.

I am tired in a way that I don’t remember being tired in my life, ever. Did I mention that I am not a fan of being pregnant? I never have been. I would rather fast forward and give birth a thousand times than feel like this. I hope there comes a point where I get my energy back again. I don’t like being slowed down in any way. I am trying my best to listen to my body. My mind is restless but my body is exhausted. I woke up last night to one of the worst dreams that I’ve had in a long time. That any memory I had of you, was totally and completely gone. Like you had been erased from all of my thoughts, visions, and dream. It felt so real. I woke up with my pillow soaked with tears, scrambling to find you. I then had to remember that you died as I tried to put together in my head, what it was like when you were here. Please don’t let me forget I thought to myself. Please. My memories of him are all I have left. I would die without them. I spent the rest of today being completely thrown off by my dream of not being able to remember you. I’m still in a funk from it.

I fell asleep early tonight, but I’m up now. I would give anything for a solid, peaceful night of sleep. I would give anything, for a lot of things like having you back here. I miss you. I love you. I hope you are safe. Sweet dreams, baby doll. I wish you were here.

xoxo

P.S. Fuck Cancer you fucking fuckwad for murdering my baby.

September is Childhood Cancer Awareness Month. Please do what you can to spread the word!

 

 

Ronan. I love you. I’m sorry. I wish this wasn’t your face because you were here and healthy. I miss you so much. I hope you are safe. xoxo