Dear Empire State Building, Part 2

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An Open Letter To Anyone Who Cares To Read It:

My name is Kassie. I am twenty-three years old. Like many around my age, I graduated from college this past year, and like even more people my age, I spend almost all of my time working an ungodly amount of hours at my first full-time, salary paid job (a job which I absolutely adore, by the way). When I do have a day off, I enjoy hanging out with family and friends, hiking, watching movies, and catching up on errands and laundry (and sleep!); in a lot of ways I guess you could say that I’m pretty much like every other kid (adult?) my age. I had a great childhood, I have two incredibly loving, strong, and supportive families, and I have a little brother who was diagnosed with a very rare and aggressive form of childhood cancer called Synovial Sarcoma when he was fifteen years old. It’s that last bit, the having a brother with childhood cancer bit, that has shaped me the most as a human being and made me who I am today-a strong and determined young woman who passionately advocates for children with cancer and works with a non-profit organization with the goal of funding life-saving research and clinical trials to ultimately find a cure for cancer and save the lives of cancers youngest and most vulnerable victims: children.

August 31, 2010: I was a sophomore at Arizona State University and had just gotten out of my last class of the day. My best friend Ann had just been diagnosed with Stage 4 colon cancer two weeks prior. I pulled out my cell phone as I walked across campus to get to my car. There was a text message from my dad that consisted of just seven words, “I need you to call me, ASAP”. An overwhelming feeling of dread filled me. I called him and he answered almost instantly. My dad’s voice was shaking. Was he crying? Was he mad? What was that sound in his voice? My dad proceeded to tell me that my grandma had just been diagnosed with breast cancer. He explained that even though it was scary they thought they had caught it early and she would get surgery and then chemo and the chances that she would beat this were good. I felt my stomach drop and told my dad how sorry I was. I automatically went to the positive, “So she has a good chance of being okay, right? She can make this. I know it.” But my dad didn’t answer my question. Instead he drew in a shaky breath and proceeded to tell me that there was more. It was my brother, Coleman. He had cancer too. Disbelief and shock hit me in the gut so hard I literally felt as if I’d had the wind knocked out of me. I do not remember the rest of the conversation I had on the phone with my dad that day. I just remember a tall kid with brown hair and sunglasses looking at me like I was crazy as I stumbled into the gravel and managed to find my balance by grabbing the nearest palm tree. To this day I find it odd that I remember exactly where I was, near the end of Palm Walk right by the SRC Fields on campus yet I can’t remember a single word my dad had said after telling me that my little brother had just been diagnosed with cancer. All I remember after that was being so dizzy that walking felt dangerous. I do not remember the drive home to my apartment, I just remember walking up the stairs to my complex, opening the door and barely managing to tell my best friend and roommate, Hannah, the news before collapsing into her arms in heaving, uncontrollable sobs. I may have been twenty years old but my best friend sat on the ground holding me in her lap as if I were a child. I will never forget that day.

Today-Sunday, August 17, 2014: In just fourteen short days, it will be exactly four years since my brother’s initial diagnosis. A lot has happened in those almost four years. I lost my best friend Ann to the terrible monster that is cancer. I learned about and was adopted into an entire community of families with children who were battling cancer. I changed my major so that I could go on to help children and their families understand their child’s diagnosis and be a shoulder to lean on and resource to help them navigate through the absolute uncertainty that is childhood cancer. I forged an even deeper bond with my little brother who never ceased to amaze me at how selfless, giving, hopeful, and inspiring he could be. I did a lot of research on my brother’s cancer as well as childhood cancer in general. I found a blog written by a mom whose son was going through treatment for cancer and through her words found someone else in this world that understood my complicated feelings and experiences in this cancer journey and helped me to find my own voice and become a huge advocate for childhood cancer. I began to raise money, attend events, and eventually work with The Ronan Thompson Foundation to make meaningful change in this world. I had a few birthdays. I sat with my brother one night as he told me he was roommates with a little boy in the hospital who was also going through chemotherapy and that he would give his life if it meant that little three-year old could survive his battle because “at least I’ve lived fifteen years and that’s a lot more than three”. I connected with the mom of Ronan Thompson, the woman behind the blog that had given me a voice when I was at a loss for words and helped me to find the courage to speak my mind on behalf of the kids who were suffering, even if that meant having people disregard me or tell me that what I had to say was too sad to be talked about. I became best friends with this woman, and only after meeting her for the first time did we realize that my little brother and her son had been roommates at Phoenix Children’s Hospital when they were receiving chemotherapy. I mourned the loss of a little boy with sparkly blue eyes that I had never met, yet had changed my life forever. I watched Taylor Swift sing her brand new song, Ronan, on the Stand Up To Cancer Telethon with Ronan’s family and friends as we all watched in awe with silent tears pouring down our faces. I attended two (soon to be three) Gold Parties in September to raise money for funding and research for new treatments for Neuroblastoma. I watched my brother’s hair come back, I watched him go back to playing sports and attending school and being a normal teenager while thanking the universe for every single second I had with my brother, healthy and happy. I watched my brother graduate from high school with tears in my eyes, overwhelmed with gratitude to witness this milestone when so many kids with cancer don’t make it. I graduated college and watched my brother go off to his first year of college. I laughed. I cried. I hiked. I ran two half marathons with no training to honor Ronan, my brother, and to raise money for Ronan’s foundation. I held my breath every time my brother went to the hospital to get scans to make sure his cancer stayed away, and I had my breath knocked out of me for the second time when after almost three years cancer free, scans came back with news that it was back again.

Like I said, a lot has happened in those almost four years. Maybe the most important thing that has happened is that I have witnessed the impact that one person can have on the world around her when she is brave and bold enough to stand up and speak out about the atrocities going on around her each and every day that everyone else is too scared, intimidated, or devastated to talk about. I have learned that when one person is brave enough to stand up in the face of adversity and shine, it subconsciously gives others the permission and power to do the same. I have come to know what it is like to have a person you’ve never met before completely change your life. I have also come to know what it is like to have someone tell you that your compassion, dedication, and courage has changed their life forever. I have watched the childhood cancer community that I was adopted into four years ago evolve and change, becoming more cohesive, recognized, and powerful and I have watched our community use that power to positively and passionately enact change that had lead us in the right direction, on a path that leads to a future where children getting cancer is only something you read about in history books. We have a long road ahead but there is power in the baby steps we have made towards our goal. There is so much work yet to be done but I can promise you we are not losing steam; we are only gaining momentum. Our biggest roadblock is in a lack of understanding and awareness that childhood cancer is not a rarity. 46 children are diagnosed with cancer every single day, and seven children will die from cancer today alone. Another obstacle we as a community face is that the general public finds childhood cancer too tragic a topic to broach meaningfully, let alone superficially.

While I will not speak for the childhood community as a whole, I can speak for myself, as the sister of a cancer fighter. All I want is to turn around the odds for kids fighting cancer. I want our society to finally decide that although talking about childhood cancer is extremely sad, devastating, and sometimes uncomfortable, we are more horrified and uncomfortable with the fact that thousands upon thousands of kids are dying from this disease and because of this we decide to shed light on this topic and force ourselves to ask the hard questions and demand answers and better funding for our kids. I never want another family to have a doctor tell them their child has cancer. I never want another parent to watch their child die in their arms. I want to fight for a world where children make it out of childhood alive. I want my little brother to be given the chance to get better and stay better, to know and experience all the many ages and stages of life, I want him to get a full and long lifetime on this earth.

The childhood cancer community I belong to is a passionate, dedicated, strong-willed, and extremely vocal one. But one thing we are not is violent, malicious, or ill wishing. I can promise you that any person who has ever loved someone with cancer is not capable of wishing the same on any other person, ever. I could not and would not wish cancer on anyone, no matter who they were or what they have done and the thought alone makes me feel sick to my stomach. The individuals I have met in this community of people brought together by cancer are some of the kindest, most compassionate, awe-inspiring, absolutely amazing human beings I have ever encountered. They are the kind of human beings that give me hope for a brighter future not just for our kids but also for the world in general. While we will not give up on what we are passionate about and have more fight and will power in us than any other group of people I’ve ever known, we do not use that fight and will power to tear others down, make threats, or tarnish others reputations. To do so is not in our nature and it is not in any way related to our ultimate mission: to find a cure to the many different cancers that afflict children and stop other families from feeling the pain that we have. Our goal, our fight, our mission has always been and always will be to find a cure to the merciless disease that continues to kills our sons, daughters, sisters, and brothers. It has always been about our kids, and to make it about anything other than that is something we will not stand for. Whether childhood cancer has affected you personally or not, I ask you, I beg of you, to advocate for our community in a way that your own child would be proud of. It is indeed possible to fight for our kids with passion, spice, and determination and also do so gracefully and in a way that is not malicious or harmful to others. I want our community to be known for the leaps and bounds we made in the research and treatment of childhood cancer and ultimately for curing childhood cancer. We are a group of people who despite unimaginable tragedy continue to come together, support one another, and lift each other up to make meaningful and lasting change in this world and overcome seemingly insurmountable odds. We are not the bullies that were addressed in the Empire State Building’s press release today, and if you have joined our community fight with the intention of being malicious and threatening, our cause is not one we need or want you representing.

Each and every day I will live with love, compassion, and strength. I will be a voice for the voiceless and I will represent our children fiercely but with integrity, respect, and grace. Thank you to everyone who has helped us in our fight for a future where childhood cancer does not exist. Thank you to the childhood cancer community that embraced me from the day of my brother’s diagnosis four years ago. Thank you to the incredible people I have met during this journey that have inspired, strengthened and loved me along the way. Empire State Building, we are not the bullies you addressed today in your statement. We are not the abusive and ill wishing “childhood cancer advocates” you talked about. While our fight to light up the Empire State Building in Gold for Childhood Cancer Awareness month is far from over, our plan of attack will never include threatening, demoralizing, or attacking any human being, whether they choose to help us shine a much needed light on the world of childhood cancer or not.

Stay Gold,

Kassie Rehorn

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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.

A Gold White House. I Will Not Stop Begging. Or Crying.

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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
A PROCLAMATION
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.
BARACK OBAMA

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.

xoxo

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.

https://petitions.whitehouse.gov/petition/light-white-house-gold-month-september-honor-pediatric-cancer-fighters-and-bring-light-cause/syV6M6wX

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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.

I meant to get a manicure, but I wound up in the hospital instead.

tumblr_m9i6yn6qKe1qkvjujo1_500Ronan. The past few days, have been really, really bad. Not only for me mentally, but physically as well. I think I’ve been overdoing some things. I think I’m in a really bad grieving period and I’m not sure quite what to do. I’m pretty sure it has a lot to do with the holidays coming up. All I want for Christmas is you and I can’t come to peace with that I don’t get to have you here with us. I am notorious for throwing up since losing you. It has been happening off and on since you left this earth. I had really bad morning sickness with Poppy that I thought I had gotten through, but it might not be the morning sickness that is making me still so very sick. I started throwing up on Monday night and I haven’t been able to keep anything down for days. I know what the flu feels like, and this is not the flu. I think it’s just grief/exhaustion/ pregnancy. My insomnia is making me a mad woman as well. The combo of throwing up and not sleeping caught up with me and Dr. Schwartz made me check myself into the hospital where I was pumped full of IV fluids, monitored, and then they gave me a shot in the ass that hurt like a mother fucker. I was dehydrated. With a severe case of I really, really, really just miss you. I am home now but I wish I wasn’t. I’m going crazy in our house, not having you here. All of my pain seems to so sharp again, just when I thought it was becoming a little duller. It’s not. Everything hurts to the core, worse than normal.

I made it through much of the week, trying to be as productive as possible. Nobody really knew anything was wrong except your daddy because he has watched me become the spawn of the devil. Throwing up, up and down all night long, crying all through the night, pulling away because it’s what I do best when I am in so much pain. I can still put on a good game face when I have to though. Like when I went to an event on Tuesday at PCH. One where the room was full of some of my favorite people that treated you. I was feeling miserable, but I know when to turn on my acting skills. I saw one of my favorite doctors there, Dr. Adams. I haven’t seen her since before you passed away. I went up to her. I don’t know if she recognized me right away. I touched her arm. “Dr. Adams. It’s Maya, Ronan’s mom.” I watched her eyes well up with tears. She grabbed me and just held on to me for a minute. “Oh my gosh, dear. How are you? I told her I was o.k. I told her about your Poppy sister. She said she was so glad to see me. The press conference started on so we had to be quiet. I stood next to her for it. She had to sneak out in the middle of it but before she left she grabbed on to me once again, embraced me in her arms and whispered in my ear. “This baby girl is not going to replace Ronan. Nothing ever will. Ever. Not even close. I know you know that. But I think she will help your broken heart just a bit. Please take care of yourself. It was so nice to see you.” I told her thank you and somehow managed not to become a puddle on the floor. That woman will always have a special place in my heart. I know she is so sad that you didn’t get better. So many people are. I was thankful for her kind words. It takes a special kind of person to really say what is in their heart. I think it is much easier for people just to say things like, “Congratulations!” about the new baby, and harder for them to really truly understand that this is not going to fix everything. That behind this baby, is still a lot of sadness and pain. I know this baby is an absolute gift. But I also know it is not the answer for the big gaping hole that is in my heart. She will never replace you. She will be a part of you. I will find some comfort in that.

It wasn’t until yesterday, that I really knew I was in breakdown mode. I know the not sleeping thing, is making everything worse. All I could do yesterday was cry and throw up. Cry and throw up. I cried at the post office. I cried picking up your brothers jerseys for their YMCA basketball game. I cried when that Coldplay song, “Fix You,” came on the radio. I walked around numbly for most of the day. I went into some stupid pretty store, full of stupid pretty things. I was waiting for the store to make me feel happy and fulfilled like I’m sure it would have, in my previous life, right? Because I’m sure I was the asshole back then, who thought shit like that mattered in life. I walked through this store, which looked like a NYC home store boutique on crack. Pretty stupid expensive Christmas stuff everywhere. I just wanted to be the normal girl who went “Ohhhh and Ahhhh!” over everything. Instead, all I wanted to do was throw every breakable, delicate item on the ground and scream, “What is WRONG WITH YOU PEOPLE! This bullshit is not what matters in life! Don’t you know that Ronan died and Teddy is dying and all these kids need our help?!!!!” I left the store and drove aimlessly around crying so hard, I don’t know how I didn’t get into an accident. I ended up in a parking lot, and called Dr. Jo. We had a good little phone conversation and I ended up calming down. I was supposed to see her today, but then I ended up in the hospital. I am home now. I wish I wasn’t. I liked being in the hospital listening to all the beeps and sounds that I used to listen to, with you. I know that sounds crazy, but to me it was comforting.

Your daddy came home tonight to tell me that our dentist had died. The non-smoker dentist who developed lung cancer out of the blue. Our young dad of a dentist that I used to take you to. How is that fucking possible? You are healthy. He takes care of your beautiful teeth. You get cancer. We stop going to him. He gets cancer. He is treated for it. You die. He dies. And you were both so fucking innocent. He didn’t smoke. You didn’t do a thing wrong in your life but you were both dealt the hand of a fucking death sentence. I hope the fuckwad that came up with the saying, “Everything happens for a reason,” reads this. Then they can go and fuck off. Everything DOES NOT happen for a reason. There was no reason for your death or his. Now his wife is left here and his kids have to grow up without a dad. There is no reason at all for the endless pain and suffering on this planet, especially when it has to do with such innocent souls. Everything happens for a reason is another one of the stupidest sayings in life. Add it to my list of things only idiots say.

Our Teddy friend is not doing so well. That might be another reason I am so upset this week. This is killing my soul. I had the best day with him this summer, kissing the top of his little bald head and holding his hand as we crossed the street. The way he laughed and played with your brothers, reminded me so much of you. He has an 8-year-old brother who is not understanding any of this. I feel like I am reading our story, all over again. I need you to take care of him, Ronan. All his mama wants is for him to go peacefully now. Please don’t let him suffer. Please let him fall asleep, the way you did. Please everyone, keep Teddy boy in your thoughts, prayers or whatever else  you do. If you want to follow his story, you can do so here. http://www.caringbridge.org/visit/teddybergergreer/journal

I’m so sorry. I don’t have much more to say tonight. I’m just so very sad for this family and this little boy. I’m going to go now my little spicy monkey. I need to try to get some rest so I don’t wind up back in the hospital. Your daddy is bringing me a smoothie home. I hope I can keep that down. So far, this anti nausea medicine seems to be helping. I miss you. I love you. I hope you are safe. Sweet dreams.

xoxo

P.S. My ass, really, really hurts. Like really. That nurse stuck me today like I’ve never been stuck before! I think I even yelped.

2 weeks is absurd. Guess I should have been checked into the looney bin, long ago.

tumblr_md84p7x3O11r2d08xo1_400

This is from my Dr. Jo. How absolutely cruel. What is wrong with these so called, “doctors?” I wonder if any of them, have ever lost a child. Medication is NOT the answer to any of this. There is no pill for grief.

 

http://drjoanne.blogspot.com/2012/12/the-death-of-sadness-birth-of-mental.html

Grief, Pregnancy, and what else?? I don’t know, I forgot.

Ronan. Today seemed like a really, really long day. The days without you never fly by anymore. They still seem to be never-ending. Today, seemed extra long for some reason. Looking back I cannot even remember what I did, but as I sit here and think about it, I know. I missed you with every single step I took just like I always do. I had to go to Target, to stock up on some things. I was in the middle of grabbing some stuff and I had one of those moments where I thought to myself, “Today feels like a really hard day for some reason. You should go back home and go to bed for the whole day.” I finished up my Target trip and told myself to power through the day and just get some things done. It was one of those days where I had to have multiple pep talks with myself. I got home and was determined to get some things done that I have been avoiding. One of them being getting rid of the hand me down clothes that I have been saving forever for you, from your brothers. I went through about 7 bins that we have in our garage. I wanted to throw up. What do you mean Ronan won’t get to wear those Nike shoes now or those little John Deere cowboy boots I saved for him? What do you mean I don’t get to pass down your brothers things for you? That wasn’t part of our “plan.” I had a very specific plan in store for our family and never did it consist of you getting cancer and dying. How the fuck did this happen? I don’t care how real this is, I will never get used to it.

I packed up your brothers clothes. I think I called your daddy on my way to the consignment store. I told him what I was doing. Or at least I tried to tell him, but I could barely get the words out without choking my tears back. He told me to wait that he would do it. I was on a mission and just wanted to get it done. I got to my destination. This was me, walking in. “Don’t cry. Don’t cry. Don’t cry.” I dropped off your brothers clothes and got out of there, as fast as I could. I don’t remember what happened the rest of the day. Everything is a blur as this little event happened earlier in the week. I’m still dealing with the if I don’t write things down, soon after they happen, I usually won’t remember them. I sometimes think my cloudy grief brain is never going to get better. I’ve been called flaky now by others. I don’t mean to be. But if I don’t have it written down, or a reminder from someone…. I tend to forget a lot of things. I wasn’t this way before all of this. This is a part of the new me. I don’t like it, but I also don’t have much control over it.

I went to see Marie Tillman speak the other night. She is the widow of Pat Tillman. One of our hero’s in our house. Remember Ro, how we used to call you our mini Pat Tillman? Your daddy and I used to always talk about how we thought you were going to grow up to be just like him. Unbelievably beautiful. Freakishly coordinated. Fearless. With the best heart. I used to tell you bedtime stories about him. We used to do the Pat’s Run every single year and I would happily push you in your jogging stroller while I ran the race. I was excited to go out for the night with Stacy to listen to Marie talk about her life and the book she has written. After she was done speaking, I had the chance to talk with her a little bit. We talked about you, Pat, and this bitch of a thing called grief. She said something to me like, “Everyone expects you to get better over time, and I don’t think that’s true. I told her that I couldn’t agree more. That unfortunately, grief does not seem to have an expiration date. It is such a misconception that time heals all wounds. If anything, I think it makes the pain worse. Deeper in a way. I think I miss you more today, then I ever have. I think I will go on missing you more and more everyday as time passes on by.

I think I have kind of been hiding out a lot. Grief and pregnancy do not go hand in hand together and they are not my friend. I’m still trying to wrap my head around this Poppy sister of yours. She’s starting to kick a lot which is helping to make me realize that she really is growing in my stomach, otherwise I think I might forget. I was with Fernanda today, telling her about how I cannot even go into a clothing store without wanting to scream and run the other way. In my mind, I was thinking this was a more of a what’s wrong with me thing? What is so wrong with me that I cannot even pick out some sweet little clothes for your baby sister? Fernanda put it to me in a way that only she could do. It’s not a what’s wrong with me thing. It’s a because “you know that material items such as clothes in a fancy store, are not what matters. They won’t make you happy. It’s just stuff and you know the worthlessness of that stuff.” I think she hit the nail on the head. All the stuff at the end the day, doesn’t matter at all. So maybe, this is what my road block is all about. Poppy has to be clothed, but Fernanda told me not to worry about that as it will be taken care of. If I had my way, she’d just be a nudey baby forever I guess. I was told also not to worry about her nursery. That she will pick out all the furniture, how it looks, etc…. Of course I trust her with all of this. I am just so thankful that I don’t have to think about any of it as it all seems so overwhelming. I am so thankful for my amazing magical friend who can fix any situation and instantly make me feel better about it. Well, almost any situation. I know she wishes so badly that she could have fixed your situation but I’ll never forget how hard she tried. She tried just as hard as your daddy and I did. I’ll never forget that.

This is all for tonight little man. I’m tired. But restless. You are still waking me up every single night at 3:25 a.m. It’s been this way, since you left. I know it’s you, trying to get to me. I know it’s as hard for you, to be away from me. I’m so sorry about all of this. I wish so badly I could bring you back. I miss you. I love you. I hope you are safe. Sweet dreams, little man.

xoxo

Sometimes even I need a reality check

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

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

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

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

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

xoxo

Oh, Hey Cancer! Fuck you! Seems like an appropriate title tonight.

Ronan. Your daddy left for Vegas. This means I get to hold down the fort while he is away. Normally this wouldn’t be a problem in the pre Ronan is not dead days. Now, doing things like keeping your brothers entertained on their fall break, solo, is hard fucking work. Don’t get me wrong, they are easy boys. And if you were here, I have no doubt we would be off doing things like going to the Pumpkin Patch, shopping for Halloween costumes, and having lots of adventures. You know what is right around the corner. Your most favorite holiday. Halloween. It used to be my favorite holiday, too. Now it just makes me extremely sad. Last year, I dressed up like a dead zombie because that is how I felt. This year, I’m not feeling like doing anything except burying myself in a big hole in our backyard. I have not carved pumpkins with your brothers yet, or gotten their Halloween costumes. We have been talking about what they want to be. Of course I always wonder what you would have been. In my mind, you would have been a different Star Wars character every year for the rest of your life. I don’t think you would have grown out of your Star Wars phase just quite yet.

Today, Liam and Quinn’s fall break consisted of therapy. It was Liam’s day to be with Dr. Rachel. It’s been a while since he has seen her. I went in and talked to her before hand. I told her that I have been having to talk about your last days a lot, with everything that I have been doing. I told her I was worried because we had not really talked about it in depth with your brothers. We agreed that she would dig deep today, without pushing Liam too much. I waited in the waiting room with Quinn. My mind was racing and of course my heart was breaking thinking of the conversation that was taking place in the next room. What a great way to spend fall break, huh. Liam came out after an hour, his little eyes all red. I got up and left him out in the waiting room with Quinn while I went to talk to Dr. Rachel about how the session went. I listened to her tell me how Liam talked very openly about the sadness he feels over losing you. How during the time when you were dying he told himself to be a good brother, to be brave, to be strong, and how he wanted to be somewhere else. He told Dr. Rachel he told you the same things. He cried a lot when talking about all of those things. She told me he has a higher emotional intelligence than most kids his age. How well he was able to verbalize everything that he was feeling. I wiped away my tears while listening to this. I felt like punching the wall and screaming, “WHY THE FUCK DID THIS HAVE TO HAPPEN?!! TO THE BEST BIG BROTHERS IN THE WORLD?!!!” I got up and told Dr. Rachel thank you. We decided that it was best for now to let Liam talk about these things in his safe space with Dr. Rachel. I asked Liam in the car if he wanted to talk about anything. He told me he did not, so I left it at that. I am just thankful that he is opening up to someone.

I picked up a friend of your brothers so we could have a play date. I took them over to The Village to play basketball, football and swim. I was sitting outside, under the shade of course with my dark sunglasses on because I have developed an allergy to the sun called, “I fucking hate you.” I was watching your brothers and their friend swim. I was trying not to get too sad that there were 3 boys in the pool and one of them wasn’t you. Just as I was sitting there, a little hummingbird came flying right up to my face. It stayed there for a few seconds. I smiled. I thought of you of course because little hummingbirds don’t happen often in my life, but when they do it is always when something really important or sad has happened and I need a little sign that you are around. 3 minutes later, my Twitter alert went off. Somebody had tweeted me that our friend, Super Ty had passed away. My stomach dropped to the floor. I sat there for a few minutes. I didn’t cry right away. I thought about the hummingbird and how that was your way of telling me you were going to take care of Ty now. Hot tears rolled down my cheeks as I watched your brothers laugh, splash and play. I sent your Sparkly a text about Ty because he knows how he was our roommate at Sloan. I told him that he had passed away and how cruel life was. I told him about the hummingbird too and how I knew it was a sign from you and how you would now watch over Ty forever. He told me that he knew that you would, too. My tears didn’t stop for a few minutes. I’m so sorry to Ty’s mama, daddy, little brother and to all who knew and loved him. I’m so sorry to Ty. Will this cruel world ever get better, Ronan? How many kids is it going to take, before people start paying attention to the point where everyone finally says, enough is enough? When is this sick cycle of kids dying over and over and over from cancer going to end? When are people going to stop looking away because it can’t happen to their child, right? I know I am making a lot of headway with everything we are doing, but some days I feel like how long is this going to fucking take? And what is it going to take for everyone to wake up and join in this fight with me? Am I going to have to organize a freaking protest or something? When will our government really step up to the plate and what can I do to make this happen? Somebody get me on the phone with Obama. Seriously. Too many parents are losing kids. Too many kids that are still here, will suffer for the rest of their lives. They deserve to stop being overlooked. They deserve better treatments and options. I don’t want another mom to have to sit down with their other children and let them look at the ashes of their dead brothers body. I am beyond heartbroken and if things continue to stay this way, I just don’t know what I will do. Really, how hard do I have to fight? I feel as though it is all I am doing, 24 hours a day. Will things ever get better? If my post seems hopeless tonight, it’s just because I am so very sad over Ty, Ronan. I hope you two are both playing together in your super hero capes. Take good care of him sweet boy. It shouldn’t be this way.

I’m going to end this here. Your brothers had a good day. I tried my best but as always I carry so much sadness around in everything I do. I miss you so much. G’nite Ro baby. Sweet dreams. I love you to the moon and back. I hope you are safe.

xoxo

P.S. Hey Cancer. Fuck you.

Quinn Does Not Have Brain Cancer and I Am Not Dying

Ronan. Quinn does not have brain cancer. Thank you for that. He just suffers from migraines, like your daddy. Brain cancer worries to rest. For now. It was a busy weekend. I spent most of it, hanging out with your brothers. They had a basketball game on Saturday. I felt so proud, watching them. Basketball has become therapeutic to them. Your daddy spends so much time, practicing with them. It’s showing on the court for sure. They are strong, fast, and aggressive. You heard me right. Aggressive. This coming from the two most gentle giants, to walk this earth. As their mama, watching this fire that burns within them on the basketball court, makes me so proud. I know it comes from you. I love watching them play. I hate how my eyes wander over to the other side of the court to where the 5 and 6 year olds are playing. I always picture you out there. You would have been the best player, rocking your Nike headband for sure. I told them after their game, how proud I was. I told them how much you would have loved watching them play and how you would have been yelling and screaming for them. The not having your little squeaky screams around, will always destroy me. Always.

I was tired Saturday, after being out for most of the day. I had a date night with Liam and your daddy took Quinn to the ASU football game. Liam and I cuddled on the couch and watched a movie. It’s still hard for me to sit still and just watch a movie. I did it for Liam. I made him a pizza and popcorn. I may have burnt the pizza, but he didn’t mind. He was just happy to have me cook it for him. On Sunday, we had a nice little treat. Our friends, Robyn and Kyle, flew in for the night. Kyle asked Robyn, if she could go anywhere for one night, where would she want to go? She said to see me. I was over the moon about the two of them, coming to visit. They got in Sunday afternoon and we spent the day just hanging out and lying low. Your daddy and Kyle did a lot of guitar playing and singing. Robyn and I did a lot of trying to find me something to wear for The Gold Party (I still having nothing to wear because I refuse to spend an insane amount of money on a dress!) and talking about you and Ezra. I hate that she gets this in what seems to be the exact same way that I get this; but I love this too. I don’t feel so alone when I am around her. I swear to you, she knows my pain almost exactly. She loved Ezra, that much. She knows her perfect life will never exist again, because her perfect life was when Ezra was here. I know that, too. We feel a lot of the same dark things that I don’t really want to share on here. I can go to the darkest of the dark places with Robyn and not be scared that I am being judged or criticized. She is one of the few people I can do this with and it’s all because cancer killed her fucking kid, too. Fuckwad asshole that cancer is.

I took her on a night hike with Kassie and your brothers. I huffed and puffed all the way up the fucking mountain. Robyn laughed at me and the way I had to have my hands on the side of my hips, so I could keep my balance. It is a lot of work carrying a Poppy in my belly. My inner insane workout goddess is not happy, but what’s a girl to do? I can’t do much, so I continued to huff and puff up to the top of the mountain until we arrived at our church. It was dark, quiet and peaceful. We did our little list of the things we were grateful for. Robyn said lists like that were hard for her. They are always hard for me. I made your brothers do one, too. I told them we couldn’t leave the mountain until it was done. They said some cute things. Things 9 year olds should say. Quinn’s last one was he was grateful for his health. That got to me, in a good way and a sad way. I was proud of him for saying his health but it also made me fucking pissed at the world that I know he only knows this, due to you dying. We got down the mountain, in the dark. I didn’t fall. Yay, me. Poppy wouldn’t have been to pleased about that one. We came home and your daddy and Kyle had cooked us all dinner. We gathered around like the unconventional family we are, but nothing has ever felt so much like family since you’ve been gone. Kyle had your brothers in stitches. Kassie just looked like an angel. Robyn just feels like home. Your daddy makes everything safe. Liam and Quinn, remind me of you. Our kitchen table was filled with laugher, pain, sadness, and beauty… all in a very safe, yet dark world that we exist in. I have decided I don’t really feel like I live anymore, Ronan. I exist if anything. I can get by, existing and working the rest of my life to exist in a really, really, really good way. By helping others and opening my heart to these beautiful people, that I am so lucky to know. So lucky for being so unlucky. Talk about ironic.

Robyn and Kyle left today. I was sad to see them go but so glad that they came. My phone rang from my OBGY’s office. I didn’t pick up, on purpose. I had blood work done there last week. I knew they were calling to tell me I had some deadly disease or that Poppy is dying. I listened to the voicemail and called back. My heart was racing. I waited to talk to someone. I was preparing myself, for the worst like I always do with every situation now. I had the talk in my head with Liam and Quinn about how I was dying or how Poppy could not be born. This is automatically where my mind goes and I’m not proud of it but it is not anything I can control. I think I was about ready to hyperventilate on the phone when the lady came on to tell me everything came back fine, except my thyroid looked off. “What do you mean, I’m not dying and Poppy’s not dying!” I wanted to scream. Surely something bigger had to be wrong? Surely the other shoe was going to drop, right?? Not today, Ronan. Not today. Not even today when my very special friend had her very hard surgery. One she thought she might die from. I told her I had talked to you, and she would not be dying. I was right. Everything went great. Thank you for that. You know I could not survive, without her.

I’m going to go now. I’m tired, but what’s new. Seems to be a theme around here. This Poppy pregnancy is for the birds. But I will try to be grateful for this gift that is growing inside of me. I am grateful, Ronan. Don’t get me wrong. I am grateful, but it is a lot harder than I had anticipated. I wasn’t mentally prepared for all the grief that was going to consume me, too. I miss you. I love you. I hope you are safe. Sweet dreams, baby doll.

xxoo

Peach Cobbler for dinner? Yes, please.

 

 

 

Ronan. I miss you in ways that I sometimes think I will die from this pain. I honestly don’t know how my heart is still beating without you. Somedays, I wish it wasn’t. I thought for a while that these days were becoming less and less. I don’t think that is true anymore. I think I’ve been fooling myself thinking that I can actually be alright living without you. I’ll never be alright. I guess the best I can be is o.k. I still think about your last days a lot. I still look for you in every single grocery store. I still stop and stare at every single 3,4, and 5-year-old that passes my way, wishing for it to be you. I will say over and over again, that I’ll never ever understand any of this. The why you had to be taken away from me. I know with everything I am, that we were never supposed to be apart from one another. I know I won’t ever know the reason why, and the reason behind this all, would never be a good enough, even if there was an answer.

This being pregnant thing is fucking with me in a way that I didn’t really prepare myself for. How can I have this life living inside of me, when I myself, feel so dead? How can I be bringing a baby into this world, when you are not here to be a part of it? Would this really be what you wanted? What the hell am I doing? It’s too late to turn back time now, but this being pregnant thing is also making me deal with my grief in a way that I haven’t dealt with it much yet. By being still and quiet. I’m used to my still and quiet on top of an inferno mountain somewhere. Not at home, in bed, because I am too sick to get up and about. I spent the entire weekend in bed, due to extreme fatigue and nausea. I got up to go to your brothers basketball game, but that is about it. I have been sleeping alright, but having the hardest time waking up, mostly because I don’t want to. I wake up to the heaviness that I felt right after I lost you. The weight of having you gone is making me not want to wake up at all. Waking up to not having your kisses anymore is the cruelest thing in the world. I hate the mornings without you so much. I remember the way you would wake up so happy to be alive. Like every single day, was Christmas. There was never a grumpy Ronan morning. It was always the best day ever as you couldn’t wait to wake me up, to start the day. The days with you, were always my best, too. I always felt so lucky to have you, like you were too good to be true. How could this little soul complete me in a way, that I had never felt before? I didn’t question it. I was just always so thankful for it. You made me whole. You made me feel perfect. You made me feel the best I had ever felt in my life. You were an absolute gift to me in every way possible. And now I am just left here without you. That makes me so very sad, even on my “happiest,” of days.

I had a lot of meeting regarding your foundation last week. I did a lot of interviews, too. Although, I turned down a lot as well.  I wanted to handle this Taylor thing as gracefully as possible, not whore myself out to every thing that came my way. I also truthfully, just didn’t have the energy to do much more than I had agreed to do. All of the interviews left me so tired, that I could hardly make it through the days. I sat with your Sparkly after my days of going non-stop. I was shaking and tired. He looked at me. “I was worried about this happening. Your stress is through the roof. What’s going on?” I just sat, dumbfounded. “I feel like I’ve just lost him, all over again. I miss him so much, I’m so worried about him. Do you still dream about him? I never do.” I watched him watch me, as the tears slid down my cheeks. His eyes turned all watery and sad. “I do still dream about him. All of the time. I honestly feel like he is alright. You have to trust me on that.” “I’m scared about this baby. What if I don’t love it as much? I don’t feel anything for it now,” I said, looking down at the floor. Your Sparkly gave me one of his famous chuckles. “Well, for not feeling anything for it, you sure are feeling it a lot.” I guess I had been rubbing my belly a lot during our conversation in a way that I wasn’t even aware of. “Stop doing all of this nonsense that you always you. This being so hard on yourself. You are the best mother I’ve ever known. You are going to be wonderful with this baby, in the same way you are wonderful with Ro, and are with his brothers.” I whispered that I knew, but I just worry about things so much all the time. Things that I would have never worried about when I lived in our perfect little world when we were together. I miss that little world, so very much.

As I said before, I spent the weekend in bed which means I was determined NOT to spend the day in bed on this very annoyingly sunny, Monday today. I tossed and turned last night, pacing the house for you. I woke up early, around 5:30 a.m. I did some laundry. I packed your brothers lunches. I peaked in your room at your messed up bed that your daddy slept in on Friday and Saturday night, due to your little monkey brothers sleeping with me. I pushed the thoughts out of my head of you having been the one to mess up your bed, not your daddy. I fled this house as soon as I could, dropping your brothers off at school. I spent much of the day, in your daddy’s office, working on things.”What are you doing here,” someone in your daddy’s office asked. I just replied I couldn’t stand being home today, in our quiet house, without you. That’s my truth, every single day. I had an alright day. I almost fell asleep at the mexican food lunch I joined your daddy for. I pushed through it and picked up your brothers at school. We spent the rest of the day, getting homework done and spending time together. Your best daddy in the world came home with my groceries as all I wanted was Peach Cobbler for dinner. A total pregnancy craving. I whipped it up while your daddy helped me make dinner for everyone else. My peach cobbler deliciousness lasted for about an hour, but then I threw it all up. I can’t seem to win around here! Oh well, there’s always tomorrow.

I have to end this here tonight, little one. I’m tired from my busy day. I do want to say a little thank you, tonight though. To everyone who has been voting for us via Facebook and sharing our voting page. We still need a lot of votes, so if you haven’t voted, PLEASE DO SO. I’m not above begging:)

https://www.facebook.com/ChaseCommunityGiving/app_162065369655?cv=2&app_data=ein|27-3409074|ref|1ee0b9047b

I also wanted to say thank you to all the beautiful emails and comments I have been getting. They make me smile and they make me cry. I am trying my best to answer them when I can, but please understand that I can only do so much in a day. I DO read them all and LOVE them all, so much. Also, thank you to that girl named Taylor for bringing so much love and light into this dark, dark world. I love you all.

And P.S. for all who are asking…no, I’m not taking any meds. Ever. I tried that a long time ago. It made everything 1000 times worse. It may work for some, but not for me. For me, there is no pill for having to live my life, without my child. I do not believe a pill for this kind of grief, is the answer. I am choosing to face this head on, no matter how hard it is and probably will always be. Ronan is worth all of my pain and I am not going to put a band-aid on all of this, only to someday have it ripped off which I think would probably do more damage later on down the road. That’s just my truth though. To each their own.

G’nite baby boy. I miss you. I love you. I hope you are safe.

xoxo