Dear Empire State Building, Part 8

IMG_1699

 

 

 

Dear Empire State Building –

 

 

 

My name is Kate. I am 9 and lucky enough to not have cancer. I know what I want to be when I grow up, but I hope that job isn’t available anymore when I’m a grownup. I want to cure cancer and help little kids get back to normal life! You might wonder why a kid without cancer would care so much about it, so I will tell you…

When I was six, I learned about Ronan and Maya Thompson and my whole life changed. Unfortunately, I could only know Ro through his mama’s stories about him because he died. My mom is my best friend – just like Ro & Maya were best friends. My mama read me Maya’s list of “How to Live Like a Rockstar” and we have been doing that ever since. I didn’t want mamas to have to feel like Maya feels every day because cancer took her sweet spicy monkey away.

My friends and I do everything we can for kids with cancer. We dance to raise money, we decorate pillowcases and posters to brighten hospital rooms, we host lemonade stands, we wear bracelets, we write their names in the sand on beaches, we release balloons on their birthdays and so much more. We do all we can, but we need the help of powerful adults to put big smiles on kids’ faces. Kids are supposed to be in parks playing with their mamas and daddies, not tucked away in hospital rooms. PLEASE HELP US.

The other day, I gave away really good lemonade and lollipops at our park to raise awareness about Childhood Cancer Month in September. I sat down with two volunteers from Camp Sunshine who wanted to hear all about why I was giving away lemonade. I told them 46 kids are diagnosed with cancer every day and that they are treated with medicine for adults. I told them every fact I could remember. They promised to tell more people. Then there were people who never even stopped to get my lemonade or one of the lollipops. It mad me really sad – not because I was a kid GIVING AWAY lemonade, but because that was one more person who didn’t know how big of a problem childhood cancer is and how much these kids need help.

If I could, I would go to companies who make medicine and ask them to help, but I’m a little girl. So, I have to do what I can and be sure to get great grades so I can go to medical school and fix it myself. My mama tells me to ask adults for help when I can’t do something by myself. So, for now I am asking you to help me tell more adults who can help. I live in Boston, but I love New York – everything about it. During my first trip to New York, you were lit up pink for breast cancer. And I just saw you lit up green for the Ninja Turtles – my friends love them! You have such a beautiful building and I hope you will light it up GOLD. That will put smiles on the faces of kids, mamas and daddies everywhere!

I know you are very busy. So, if you take one thing from my letter, please take Maya’s advice on living like a Rockstar. She said, “Trust your instincts. Listen to your heart as it is more powerful than your mind.” I hope your heart will show you the power of fighting for kids with cancer.

BeBoldGoGold.

Thank you!

Love,
Kate

10620789_10203652769936605_5582977248960737188_n

Dear Empire State Building, Part 6

58a7f40bc49023f7d2a3b9b1d07cfb68

 

 

Dear Empire State Building,
My name is Jennifer Garcia and I am a 24 year college student from California. I have been to New York once and I remember feeling like it was the most magical of places, the place where anything could happen. I always aspired to go back one day and I hope when I get the chance that I can know that for one day in September the top of the Empire State Building sparkled gold for our kids. I say ‘our’ kids because it shows how much of a tight knit group of people we are, us activists for childhood cancer awareness.

You think that we are pushy, mean and threatening? We are passionate, angry, devastated and some broken beyond repair by the loss that we face everyday. The loss of a child whether it was our own child, a friends child, a little brother or sister or a beautiful boy with the most sparkling blue eyes that you only know through photographs and the words of a mom who will never stop fighting for him. I was aware that kids get cancer, I saw the St. Jude commercials and I would frown for a moment and then the program I was watching would come back on and I was sucked back into the happy state of ignorance. All that changed when I watched Taylor Swift sing at the Stand Up To Cancer telethon. Before she even finished the song I was sobbing uncontrollably. When i was finally able to compose myself I raced to my laptop and typed “Ronan” into Google. My world changed that day I could no longer just shake my head and think how sad when I saw the St. Jude commercials or the collection jars at the supermarket. I started doing research and was horrified when i found out how underfunded pediatric cancer research is. All the times I donated to American Cancer Society only 1 cent for every dollar went to pediatrics. Our kids are getting swept under the rug like a dirty secret. It seems like the world is whispering, “Shhh, If we don’t talk about it maybe no one will notice.”

Well, we have noticed, it is all around us, the world is full of scary things and we want to protect our children any way we can. Unfortunately, we can’t protect them from this we can kiss away their tears and try to make them smile but this isn’t just a scraped knee or them teased at school. This is the biggest bully they can face and no matter how much we whisper to them “It’ll be okay” we know this is one thing we can’t promise to save them from. There is nothing worse then knowing you can’t protect them. When I read that Maya was trying to get you guys to go gold for ONE day in September, sadly my first thought wasn’t this should be easy. My first thought was this is going to take some work to get noticed. What kind of world are we living in where we have to shout and send out petitions and trend worldwide on twitter to raise awareness for childhood cancer. You light up different colors for the dog shows and the Ninja Turtles movie premier. Are dogs and ninja turtles more important than our kids? In a way that is what it sounds like your saying.

I read the message that you don’t take requests from individuals just organizations. The Ronan Thompson Foundation is an organization and they along with thousands of others are begging, yes begging, you to change your mind and do what is right. Restore our faith in humanity and turn gold for one day. We are not a picky bunch, you choose the day in September. Just please light up gold. I am not one to beg or plead but I want to have kids one day and I don’t want to bring them into this world knowing that Cancer is a possibility for them. I want them to have endless possibilities for happiness and success. I want them to live spicy sparkly lives and I want to know that the possibility is there for all kids. We can’t save them all but we can try. We can try extra hard for those kids that didn’t get to reach their full potential. The one’s that we only saw fleeting glimpses of the outstanding things they were going to do. Help us make their lights continue to glow gold.
Be Bold Go Gold,
Jennifer

Dear Empire State Building, Part 4

Dear Empire State Building,

Unfortunately, my family was introduced to the ugly world of childhood cancer this year. Our lives were turned completely upside down on March 7th, 2014 when our four year old daughter Olivia was diagnosed with Leukemia. Then the following day, when cancer already knocked us to the ground, it kicked us again when we found out the type of Leukemia Olivia had, we were told it was AML. A rare cancer in children that would keep her in the hospital for her entire treatment. Why did she have to be kept in the hospital you would ask? Because the type and amount of chemotherapy she would need to have to fight this horrible disease is extremely dangerous and she needed to be monitored while she received her chemotherapy and as her whole immune system would completely bottom out and come back again.

After finding out Olivia’s diagnosis we had to wait for further tests to see if she would need a bone marrow transplant or not. Fortunately, after her first round of chemotherapy (5 weeks in-patient) she went into remission and this among other good test results she received meant she did not need a bone marrow transplant. We got to go home for 9 days, then packed up and had to move right back into the hospital for her second round of chemotherapy. This time we were in-patient for 4 weeks. Then we got to go home for 5 days just to pack up and move right back into the hospital for her third round of chemotherapy. We were in-patient for 4 weeks again, got to go home for 7 days and then back in for her fourth, final and scariest round which was 6 weeks in-patient. We had always been told once she went into remission that it wouldn’t be the disease that would kill her, it would be the infections that she could potentially get from the chemotherapy wiping out her immune system. Once she would receive her chemo about a week later, her body would have no way of fighting off even the tiniest infection that you or I could with no problem. We watched an infection almost take our baby girl from us in her fourth round. She slowly got worse and worse every day from a cellulitis infection which landed her in the ICU for over a week. She received white blood cell transfusions to help her body fight off the infection which were extremely hard on her body making her get really high fevers that Tylenol (the only form of medication a Leukemia patient can take for a fever) couldn’t knock out. These weren’t tiny fevers either, these were fevers in the 105 range, her highest being 105.9 at one time. After 5 days of these transfusions she then got pneumonia in one of her lungs that almost forced them to sedate and put her on a breathing machine for. We were devastated when her oncologist who usually is the most upbeat and positive person came in to see her and had a very sad look on his face. I completely lost it, begging him to tell me my little girl would be okay. I was crushed when he said, “I’m sorry I can’t do that, we are not good at predicting the future.” His face and tone of voice said it all, he said he was scared and we knew that just by looking at him. But our strong and amazing Olivia fooled us all when she started to get better literally the very next day. We got out of the hospital 3 weeks ago and now we are still waiting for her little body to recover and are waiting on her last bone marrow aspiration results to make sure she is in fact still in remission.

We have had to watch our daughter be put under anesthesia 7 times so far. We have had to watch nurses come into her room wearing hazmat gear while they hooked up the chemo, why hazmat gear? Because they can’t be exposed to the pure poison we allowed them to send through our child’s tubes and into her veins. Once a week (some weeks more than once) she has had to go through “dressing changes” where they have to painfully take the bandage off of her Broviac (the tubes literally hanging out of her chest) to put a new one on. Countless platelet and red blood transfusions. A cellulitis infection on her private area which forced us to make Olivia pull down her pants to show every doctor and nurse who came in her room to check on her. As you can imagine this was extremely hard on her as she has been told and told before diagnosis that we don’t show our private parts to anyone. This same infection required surgery where they had to insert a drainage tube that had to stay in for 2 weeks. I have had to hold her down while she kicked and screamed through dressing changes, x-rays and an NG tube being inserted through her nose, down her throat and into her stomach because she couldn’t keep the disgusting contrast down for one of her many CT scans she had to have. NO child should EVER have to see, feel or know what my four year old has. NO parent should ever have to watch their child be put through any of this. It’s pure hell, nothing anyone can imagine unless you’ve been through it yourself. And trust me, you aren’t exempt, this can happen to anyone.

I was just like anyone else that has never seen a child suffer through cancer – I think Maya puts it perfectly – “blissfully ignorant”. I assumed that all funds received for cancer went to all types of cancers including childhood cancer. I actually assumed that children got more than adults! I remember the first time another oncology mom I met in the beginning of this horrible journey of mine told me that childhood cancer is disgustingly underfunded. I didn’t believe her! I thought, “There is no way we would treat our children this way! Whatever happened to “children are our future”??? That is when I decided to Google childhood cancer and how much money goes to research. I was crazy angry and saddened to learn that because less children get cancer than adults, researching childhood cancer isn’t profitable to the pharmaceutical companies. So basically my child just like the 46 children who will be diagnosed with cancer today aren’t important enough to do more research for.

Olivia will have to get blood work done for the rest of her life to make sure she doesn’t relapse. There is a 35-40% chance she will. 35-40%! I know that doesn’t sound like a big chance but it’s not good enough! For everything she went through to go into remission she should have a 0% chance. That 35% will haunt me for the rest of my life. That 35% is putting me on anti-anxiety medication so that I can at the very least barely get by every time I have to wait for the results from her blood tests.

My family will never be the same. I, now as an oncology mommy will never be the same. Every fever, every bruise, and every illness will send me over the edge. I also have a two year old son whose world was rocked as well. He had to live without mommy and daddy for five and a half months while we spent every agonizing day in the hospital with Olivia.

Have you not experienced this? Have you not had a family member experience this? Have you not had a friend experience this? Be thankful…but then realize that you’ve been made very aware and now you can make a difference! The children with cancer and their families shouldn’t be the only ones who know about this. The entire world needs to know about childhood cancer and then they need to be aware that the American Cancer Society doesn’t do anything for our children. We are on our own, which is why you have so many parents of children with cancer in an uproar. We are their only hope. I will forever fight for awareness. Everyone needs to know what GOLD stands for!

Sarah Dodson

BeforeAfterDuring

Huffington Post and The Empire State Building

0937b38505e73d7fbba4cf08eba0445d

 

 

Through Ronan’s story, I have come to know the most beautiful people who are so passionate about this fight. I am so proud to call this little gem, Rainesford Alexandra someone who inspires me everyday to be a better person, leader, and fighter. If this is what our youth of today looks like, our world is going to change in a very bright and beautiful way. Thank you sweet girl for all of your help, friendship and passion. Please share this story and know that together we will change this. I am determined and hopeful that we will see The Empire State Building, Go Gold. xxoo

http://www.huffingtonpost.com/rainesford-alexandra/will-the-empire-state-bui_b_5664993.html

The day you died, the day you were born and the day you died again because you were put in a urn. Happy should have been 7th birthday, my spicy Ro.

10277631_10152470522586667_3424311708954636435_n

 

 

 

Ronan.  I didn’t die from the fuckwad of May dates that I had to get through.  The day you died. Mother’s Day. Your birthday, which was also the day you were cremated. And the day we had your celebration of life aka a bullshit word I think I let everyone around me make up when it should have just been called “the most fucked up reason for a funeral” because that is how I really feel about it.  We went away for May.  It was as good of a trip as it could possibly be, despite the circumstances.  We went to New York and spent about a week out in the Hamptons with our dear friends who are pretty much the only reason I got through everything alright.  On the day you died, I didn’t sleep much.  I tossed and turned the night before and sent my same text that I send every single year around 3:20 in the morning to Mr. Sparkly Eyes because he was the first person I texted after you died and I’m weird with my rituals like that.  I said what I always say which is how I hope he never forgets how much you loved him.  How thankful I am for him and the role he played in your life and how I will never forget how above and beyond he went for you and continues to do so in this life now.  He called me a few hours later and I ran outside, barefoot so I could talk to him without waking up the entire house.

“Are you o.k.? That is a stupid question. I know you are not.”

I told him it was ok, that I was as o.k. as I could possibly be. I didn’t cry this year when he called for some reason.  I just let his words sink in and took his advice which was basically, “You don’t get to stay in bed today because that is not fair to Ronan or your other kids, so go out and do something.” I told him I would and I listened again as he told me how sorry he was.  I thanked him for calling and told him to please go and do something for you today, besides work.  He said that he would.

We spent the majority of the day, outside in the cooler temps by the ocean.  We played in the grass, rolled down hills, climbed to the top of a lighthouse, watched Poppy go to town picking flowers and ended the night by jumping in our freezing cold pool.  We were pretty much surrounded by friends the entire time we were in the Hamptons and it is because of this that our days and nights were actually filled with smiles and laughter.  Poppy kept everyone on their toes with her constant dancing to Pharrell Williams, “Happy.” A couple of years ago I know hearing this song would have thrown me right over the edge.  Now I am able to dance and sing to it and I know that is all because of her.  How can one not feel happy watching a one year old pump her little arms and rock back and forth on her chubby little legs to the beat of this song? Impossible even when you have an almost 4-year-old in an urn and kissing that goodnight is the closest you will ever get to kissing his little body again.

We spent your birthday in the city.  We started it off by grabbing pizza at your favorite place which is right by the Ronald McDonald House.  We then walked through the city a bit and went to see our good friend, Scott at Solving Kids’ Cancer.  Your daddy hadn’t met Scott before but they talk a lot on the phone.  I was beyond excited for the two of them to meet because 1)Scott is amazing and 2) They remind me a lot of each other. Of course they hit it off and seeing the two of them together made me smile on your beautiful day. I stepped out of our “meeting” and ran across the street to meet up with a favorite editor of mine in the literary world.  It was so good to hug her and catch her up on this book/life/fuck cancer/she couldn’t believe it was your 7th birthday.  She was so good about checking in with me to see that I was alright the entire time we were together. Our time together was so nice and I was so glad I got to introduce her to your daddy since he hears me talk about her so much.

After our impromptu meetings, we continued to do all your favorite things in the city.  Poppy took the streets by storm of course and I did my best to let her have a little freedom, while trying to keep her safe from getting run over by the crazy NYC taxis.  It was the first time in my life that I understood why those parents put their kids on leashes; because I totally wished I had one that day.  Instead, I chased your sister down the sidewalks as she took off without looking back at all and after a minute I would have to grab her from behind, pick her up to keep her out of harms way, all while she screamed bloody murder for me to put her down.  She seems to have turned a corner since turning one and I’m not sure there is any going back.  Miss Independent EXTRA spicy Poppy it is.  I, of course wouldn’t have it any other way.

We walked as much of the city as we could.  Stopped for a little pit stop in Central Park so Poppy could actually do some real running.  I plopped down in the grass, exhausted from a beyond mentally exhausting day.  Your brothers ran all about and your daddy took your sister to play on the playground while I stayed behind, laying in the grass and looking up at the sky.  After about 10 minutes, all the tears I had been holding back came pouring out and I just gave in and let them, not caring who would see.  My little, Rachel, came walking over soon after as she had been trying to find us in the park.  Just in time for me to bury my head in her lap while telling her, “I haven’t been very spicy today” as the snot dripped out of my nose and tears plopped out of my eyes and on to her jeans. She stroked my hair and said it was alright.  I cried for a few minutes more and then got up to decorate the most beautiful tree with a ton of your Ronan bracelets.  I had to do something spicy, so I climbed up the tree and sat there for a bit.  I can’t remember the last time I’ve climbed a tree and I wonder why.  It was lovely up there and so something you would have done.  At this time, it was getting dark so we parted ways with Rachel and ended up back at your favorite pizza place, one last time.  We had one last thing to do which was our random act of kindness so we bought a ton of gift cards at the pharmacy next door and I took your brothers and marched my little butt right back into that Ronald McDonald House where we spent so much time.  I told them I wanted to drop them off to give out to the family’s that were staying there.  I had a flashback of you in the lobby there, right when we arrived and you were wearing your cute little warm hat, standing on the luggage carrier giving me the biggest smile as if you trusted me with your life because you knew I was going to get you better and fix all of this.  I’ll never forget the look in your eyes as they sparkled so bright and were full of such hope, trust and love.  I’m so sorry that you will never get to be 7 and instead you will be always almost 4. I’m so fucking sorry.

Ending this now with some words I read a while ago and I like to read them again when everything seems to be lost in the world, but I know it’s not because once upon a time, you were mine and I was yours.  You always will be mine, even if you are not here but somewhere else where I know I will see you again.  I wish knowing that made things hurt less, Ronan.  Sometimes this pain is all too much.

I miss you.  I love you.  I hope you are safe.

On this day, you read something that moved you and made you realise there were no more fears to fear. No tears to cry. No head to hang in shame. That every time you thought you’d offended someone, it was all just in your head and really, they love you with all their heart and nothing will ever change that. That everyone and everything lives on inside you. That that doesn’t make any of it any less real.

That soft touches will change you and stay with you longer than hard ones.

That being alone means you’re free. That old lovers miss you and new lovers want you and the one you’re with is the one you’re meant to be with. That the tingles running down your arms are angel feathers and they whisper in your ear, constantly, if you choose to hear them. That everything you want to happen, will happen, if you decide you want it enough. That every time you think a sad thought, you can think a happy one instead.

That you control that completely.

That the people who make you laugh are more beautiful than beautiful people. That you laugh more than you cry. That crying is good for you. That the people you hate wish you would stop and you do too.

That your friends are reflections of the best parts of you. That you are more than the sum total of the things you know and how you react to them. That dancing is sometimes more important than listening to the music.

That the most embarrassing, awkward moments of your life are only remembered by you and no one else. That no one judges you when you walk into a room and all they really want to know, is if you’re judging them. That what you make and what you do with your time is more important than you’ll ever fathom and should be treated as such. That the difference between a job and art is passion. That neither defines who you are. That talking to strangers is how you make friends.

That bad days end but a smile can go around the world. That life contradicts itself, constantly. That’s why it’s worth living.

That the difference between pain and love is time. That love is only as real as you want it to be. That if you feel good, you look good but it doesn’t always work the other way around.

That the sun will rise each day and it’s up to you each day if you match it. That nothing matters up until this point. That what you decide now, in this moment, will change the future. Forever.

That rain is beautiful.

And so are you.

 

This slideshow requires JavaScript.

May, May go away. Do not come again another day.

e560a4a83b6491e9b7dc03764391f5bd-1

 

 

 

Ronan.  May is officially here and I’m trying my best not to go into freak out mode.  You know what is coming up and it never gets easier.  May 9th will be 3 years without you and May 12th will be your 7th birthday.  Not to mention Mother’s Day, the day we had your funeral, the day you were cremated, which also happens to be on your birthday.  It’s all these fucked up dates that I wish didn’t exist, but they do and there is no escaping them.  I will come up with some sort of plan to get through the days like I always do and luckily I know we will be with some of my most favorite people, so hopefully that will help ease the pain just a bit, but every part of me remembers the pain of these dates.

I don’t even know what has happened since the last time I have written.  My days are filled with all things Poppy and that is about it.  I have really taken a step back from everything in life because for the past year, I just really needed to get lost in her and that is exactly what I have been doing.  She deserved that, Ronan and frankly, so did I.  I needed to just take this time and soak up all of her innocence, sweetness, and truly get to know my baby girl.  Poppy doesn’t have a lovie or a blanket that she is attached to when she sleeps like you did because you know what she uses instead? Me. I have not put her in her crib once to sleep, not even for a nap.  I rock her, lay her down in bed with me and listen to her as she hums and plays with the necklace that sweet Mrs. Martin gave to me when Poppy was born. It’s just the letter, “P” and she falls asleep every day and every night by holding on to me and my necklace.  That is how attached we have become and I wouldn’t have it any other way.  I cannot imagine doing this life without you AND without her.  I don’t know what I would have done had we had not had another baby.  She brings about me a calmness that has been missing for so long.

It did happen the other day though.  The thing I knew was going to happen sooner or later; I am just surprised it happened while she is so young.  It was about a week after her first birthday and I was laying her down to change her on your bed.  We have that huge picture of you hanging over your bed and as I was putting a new diaper on her she looked over at your picture, pointed and goes “Ro Ro.”

I almost fell over.  I truly thought I was hearing things so I said, “What did you say?” She looked at me, pointed to the picture and goes, “Ro Ro. Brotha. Brotha Ro Ro Ro.” She motioned for me to pick her up and take her over to your picture so I did and she planted a big fat kiss on your little lips.  The tears started pouring down my cheeks and I had such a mixed reaction of total euphoria and wanting to run kicking and screaming out of our house.  It took me a few minutes to decide what it is that I was going to do.  Was I going to run away or just take a deep breath and embrace this moment of pure fucking amazingness that can only be explained as Poppy knows things that are not from this world?  She can’t even say Liam or Quinn’s name yet and the fact that she not only said your name, but knows who you are from a picture makes my heart go a million miles a minute.  As soon as Quinn and Liam got home, I grabbed Poppy and took them into your room.  I said, “Watch this.  Poppy, who is that on the picture?” as I pointed to you.  She goes, “Ro Ro.” Quinn started giggling uncontrollably and Liam didn’t quite know what to do.  “She just said, Ro Ro! Mom! Did you hear that?!” Quinn was jumping around with such excitement.

It’s been non-stop since that started a few weeks ago.  All day long all I hear, besides her barking like a dog is “Ro Ro Ro Ro. Brotha Ro Ro.” She is usually walking around carrying a picture of you, kisses it, and goes back to playing with something else.  She also studies the picture frame you are in like crazy, trying her best to open it.  It’s like she’s saying, “I know if I get this open, I can get him out and he can come and play with me.” I truly think that is what she thinks.  Oh, how I wish this were true.  I’m torn between loving all of this so much to sometimes it makes me sick.  As I said to your Sparkly the other day, “I’m going to break Poppy’s heart one day when I have to explain to her where Ronan is and what happened to him.  I don’t want to break her heart. How am I going to look my daughter in the eyes and have that conversation with her?” The thought of it makes me want to vomit all over the floor.  Why the fuck can’t her first heartbreak be over some asshole guy she will date when she is 16? Not over her beautiful brother that would have loved her so much, taken such good care of her and beat up the fuckwad who broke her heart? I like that story much better than the one I’m going to have to tell her.

I think I have to go now, Ro. Much more to say as always but my eyes are burning and bed is calling my name.  I’m forever sorry it is this way.  I miss you.  I love you.  I hope you are safe.

xoxo

photo 2

The treadmill made me do it.

tumblr_mx3o6k4DL11qz8rpeo1_500

 

 

Ronan. So, this happened tonight. The usual running around like mad, Poppy is into everything, I’m trying to get something on the table for your brothers to eat before they come home. I have so much nervous energy today that I haven’t slowed down once.  I know as soon as your daddy and brothers walk through the door I will be handing over Poppy to them so I can go and work out because if I don’t, bad things will happen.  At least that is what I tell myself in my head.  I go to my little class where I find myself in a room full of people that I have no interest in talking to, half are doing weights/floor exercises and the other half are on the treadmills while we are getting instructed on what we need to be doing.  I am of course on the treadmill, happily running away while staring at myself in a mirror. My reflection looks sad but determined.

We take turns running at our base pace which for me is a 6.7 speed and 3 incline.  We are told to step it up for 90 second all outs so of course I push myself to the max.  5 incline, 8.0 speed.  I start to run as hard as I can and my heart feels like it’s going to explode out of my chest, but of course I don’t stop.  All of a sudden, I really can’t breathe or catch my breath for what feels like minutes.  Then it happens.

Is this how Ronan felt, right before he died? 

He couldn’t breathe, he ran out of air, oxygen, and probably felt just like this right before he died. 

How could you have let this happen? How could you not have saved him after you promised him that you would? You are the worst human being on the planet. You let your child die and now you just get to continue on with life while he does not? How is that at alright? You should be dead, not him. 

Fuck you. You don’t get to stop and sit here and think about how hard this is and how you want slow down and stop. You keep going because you are not the little boy who got cancer and died.  You get to be here and do this and you don’t get to stop. Ever. 

I stare up at the screen which is monitoring my heart rate and beg for it to come down because if it does not soon, I know I will pass out.  I continue with the torture of beating myself up on the treadmill while flashes of you dying and taking your last breaths fill my mind.  The person leading the class is now keeping a watchful eye on me as I think he has caught on to the fact that I might be over doing it just a tad.  An hour later and I am finished and I somehow make it to my car only to drive home to a house that doesn’t feel like home to me anymore. I head straight for the shower and try my hardest to scrub the images of you not being here out of my head, but it doesn’t work.  I then throw myself in my bed, where I cry the tears for you that I haven’t had for a few days.

Your daddy comes in, asking me what happened.  I ignore him and continue to cry into our mattress. When I finally come up for air, I snap at him that nothing has to happen, for something to be wrong. That I just want to be fucking sad for the one thing that I will be sad about for the rest of my life.  I don’t want to be hovered over.  I don’t want anyone to wipe away my tears. I just want to be left alone.

This is all I can say for tonight. I’ll let my friend, Tyler Knott say the rest.

I miss you. I love you. I hope you are safe.

Typewriter Series #690 by Tyler Knott Gregson

There will come a time, a day, a moment when words are not enough.
When the letters hooking to other letters and tying themselves
to each other, the trains of vowels and consonants chasing each other
out of my mouth just won’t do justice to the avalanche that you’re
struggling through.
If this is that day, if these are those moments I will not speak,
but I have no choice but to leave you with these attempts, as futile
as they might be, for words are all I have to offer
and the only currency I believe in:

This is not, and never will be, a goodbye. You should not, and never can
hold onto the should haves or could haves or why didn’t I’s.
The time will come, I promise you, for us all to stop wearing these bodies
atop these souls.  The time of taking one long, full and deep breath
in through these lungs only to exhale it out through brand new lips.
The last light we will ever see through these perfect and beautiful eyes
will be the first light, the exact same and blindingly gorgeous first
light that filters through new irises and shocks our tiny pupils
before we blink. What a gift every single day in between has always been.
What a hauntingly painful and sublimely joyous gift to live, truly live
every single day in between these firsts and yes, these lasts.
Do not carry the weight of all you did not say, the times you did not make
the time or the excuses you made, because there is a secret you must know:
Those that leave us, never do. They see us how we never could and how we
were always so scared to. When they go, bravely stepping into the first day
of their new lives, all they pack into the bags they choose to carry,
are the memories that soothe their longing and and settle their aching bones.
It is we, always we that carries the luggage of regret and burdens of doubt
Somewhere, right this very second, they are beginning their journey back
into love. Somewhere, right this very instant, the first wobbly steps in their
search has begun again.  Somewhere, the only person that truly makes sense to
them, the only person to ever exist and exist exactly for them, is waiting. 

You will hurt.  You will cry and you will be scared. You will miss and long
and ache and look for their fingerprints on the life you’re going to lead
without them.  You will swear you heard, if only for an instant, the sound
of their laughter or the timbre of their voice.  This is ok, and more than
that, this is beautiful.  Hold onto the sadness you feel like a trophy.
Hoist it high above your head and shout to the photo that is not being taken
of you that you loved them, you will always love them and you are proud
of the tears that roll down your face. They live inside the memories that give
shape to those tears and you must never apologize for your sorrow, nor your
joy when it too returns to your days. 

These are the words for those that remain; for all of us and all of you that
are left scrambling and shaking and weeping tears of compassion and joy and
confusion.  These are words when words are not enough.  I say them because I
must say them, because words are all I have to offer besides my shoulder and
my hands and my belief that this is not and never will be goodbye.
Today is and always has been such a perfect day to say goodbye,
and to once again, say Hello.

-Tyler Knott Gregson-

 

 

 

A quick little check in because I miss you oh so very much.

photo 4

 

 

 

 

Ronan. Oh, how I miss this little blog so very much.  It makes me so sad not to be writing on here like I used to.  This will always be my first home, my first comfort after a hard day, and where I found my love for writing.  It’s hard to be away from this space that I used to find so much solace in. I cannot seem to keep up with life let alone a blog these days, not to mention this book I’m working on.  And holy shitballs, I totally have forgotten how much work it is to have a new baby.  Things are so freaking busy around here that I feel like my head is going to fly off and just explode.  Oh, and my grief.  I miss being with my grief a.k.a Inferno Fuckwad Bob, so very much. It’s not good for me to not have the time to nurture and sit with my grief the way Dr. Jo has taught me to do.  I promise that I will make some time for it soon.

I can try to sum up what has been going on, but I have no way of remembering everything.  Macy came into town for about a week and it was of course the most beautiful happy/sad/ time.  She was in for work so she got to spend two weekends with us which is always so good for my soul.  We laughed a lot and cried a lot as well.  On one particularly hard Sunday, I found myself curled up in her arms on your bed where I just sobbed for you as the missing you part of all of this never gets easier.  It still sends me into a whirlwind of complete and utter devastation at the drop of a hat.  My time with Macy wasn’t all tears.  We had the BEST time playing with your Poppy Roo and making up ridiculous songs to her like, “My two moms” which was all about the fact that Poppy does indeed, have two moms because if I wasn’t married to your daddy, I would totally marry her;) She is the best wife ever and one of my other little soul mates floating around on this earth.

Poppy came down with a little fever while she was here and we wound up in the waiting room at our pediatricians office where we know we really did look like Poppy’s two mom’s as we were resting each others heads on one another’s while Macy sat and rubbed my arm.  I pretty much wanted to curl up and die when I saw Dr. Campbell exam Poppy and Macy’s eyes fill with tears as she did her routine exam which included the pressing down hard on her belly to make sure there was nothing out of the ordinary there.  Macy knew why she was doing that and there was no stopping her tears from falling.  I just gave her a weak smile as I watched her wipe them away.  We talked about it afterwards and how hard it often is for me to walk back into our pediatricians office without you. Well, it’s always really hard for me to walk back in anywhere we used to go, without you.  Macy watched as I had to fill out the new patient forms updating our family info such as kids’ names, ages, etc… I looked over at Mace and said, “I’m writing Ronan down, too. He is still my child.” Macy just looked at me and said, “Of course you should,” as she gave my hand a little squeeze.

My weeks have been filled with pretty much everything Poppy and just trying to keep up with her.  I truly had forgotten what it is like to have a baby and now a very active baby.  How 10 months already flew by, I do not know.  She is the happiest little thing and it is so beautiful to see.  She is my constant reminder that no matter how hard of a time I truly think I am having, because there still are times that those voices creep into my head and tell me that everything I am doing is wrong… Poppy is proof that I am actually doing alright.  I don’t think she would be such a happy girl if I really were doing as shitty as I sometimes think I am.  I know the weeks that are hardest for me seem to be the weeks that I am not sleeping well.  It’s when my insomnia kicks in that the screaming in my head seems to always be the loudest.  This past week has been alright and I am so thankful for that because if I would have checked in with you last week, I would have told you I had my bags packed to check into an insane asylum.

Your brothers and their never ending sports have been keeping me busy as well, although I give pretty much all of the credit to your daddy who is the one who really keeps them on track with all if it with his coaching of their baseball team, helping out with baseball, and flag football. He is the most amazing basketball coach and has your brothers team ranked #2 in all of Arizona for a fourth grade team.  I know you would be so proud of that and basketball truly seems to have been such a saving grace to your brothers.  It has kept them focused, on track, and it’s almost like a form of therapy for them.  I could not be more proud of their dedication, will and determination.

I’ve been hiking, running, and doing my little Orange Theory Workouts like crazy.  Exercise is still one of the main things that quiets the screaming in my head and gives me just enough of a break to stay sane.  My time at the top of Camelback is always my favorite as it really is the time I feel quietest and closest to you.  The other day while I was sitting on a rock, thinking about you, I had a little hummingbird fly right up to my face.  I grabbed my iPhone thinking there was no way it was going to stay right there long enough for me to get a picture, but it did and I was able to snap the most amazing photo.  It was a moment that I still have not been able to find the words for.  I absolutely know that it was a little sign from you telling me that you are always with me.  On Saturday morning I hiked Camelback with Tricia and Marisa- my two oldest besties from my previous life when you were still here, alive and well.  It has been so long since I have been with the two of them and I cannot tell you how nice it felt.  We had breakfast for Marisa’s birthday and then decided to brave it up Camelback Mountain in the middle of our little Arizona rainy day.  Once we were at the top and had been sitting for a while,   that little hummingbird flew right up to me again.  It gave me goosebumps and chills all at the same time.  I think it was your way of telling me that you were so happy to see me spending time again with my old friends, as you know they are so good for me.  It’s taken me a lot time to be able to get to a place again where I can truly connect with the ones who knew you, loved you, and hurt so badly from losing you.  For a long time the pain of being around them was just too much, but now I feel like I am at a place where I am ready and able to come back.  I am just so thankful that they have both just been standing by for my return.  I have missed them so much and Saturday ended up being the most perfect day.  As soon as we were finishing up our hike, it started pouring down rain.  Marisa said she knew that you made it rain at that perfect time because had it been raining like that as we were climbing down Camelback, one of us would have surly fallen and broken our necks as that mountain is beyond slippery and dangerous when it’s wet.

I am trying to make myself do things that I know make me feel somewhat good because I know the shit storm of May is fast approaching.  Things like buying tickets to upcoming concerts like Lorde and Lana Del Rae, both whom I am so freaking excited for.  Also things like spending time with the ones who I know are best for my soul like our dear Kassie who I spent all of Saturday with watching “Girls” episodes while eating Nutella straight out of the jar. Ummm… excuse me…. but where has this thing called Nutella been all of my life?! It’s like crack in a jar and I might have a problem especially during my nights of insomnia where I always find myself with a spoonful of it in my mouth. It’s the simple things that make me the happiest and I have learned that finding people who truly feed your soul is the best medicine around.  I am very blessed to have the friends that I do, I know this. Your Sparkly was inquiring about my weekend and I told him I had spent Saturday night, cuddled up with my 23-year-old best friend.  He said something like, “How come you love to spend so much time with people who are so much younger than you?” I just laughed and told him I like to hang out with people based on who they are as human beings and age is not a factor.  I like to spend my time with the people who make me think about things, who push me to do better and be better, and who actually somewhat get me – himself included.  I often feel like people get too caught up in this whole age thing in life.  You should just be with the people that make you happiest and Kassie truly makes my heart sing.  I wish so badly you could be here to know her, Ronan.  Sometimes when I’m watching her with your Poppy sister, I close my eyes and pretend it’s you that she is bonding with, kissing on, and loving.  I know that in a way it is and sometimes that even makes me smile.

Alright little man.  I promise to write more later.  So much more I need to tell you/fill you in on but this is all I have time for as of now.

I miss you. I love you. I hope you are safe.

xoxo

This slideshow requires JavaScript.

Your song for the night. Sorry it’s been so long since I’ve done one, Ro baby.

tumblr_mz1r6eehVv1r3e62yo1_500

Obsessed with this song.  It may make me bawl like a baby, but it is so beautiful. Plus, Poppy loves it.

http://www.youtube.com/watch?v=-2U0Ivkn2Ds

Introducing…

tumblr_mwe4nozlVV1qkp87go1_500

http://www.littlesealtimes.com/front-page.html

The Little Seal Times! We get so busy around here, but are trying to do our best to keep you updated on foundation things.  We are getting ready to fund some really amazing things, thanks to ALL of you!!! Please check out our newsletter which will be updated monthly.

Thank you for your continued love and support!

xx

  • Instagram is my BFF

    Yeah, sometimes the kindness of strangers leaves me sobbing at the post office for 20 minutes before I can drive away... #ronan #fucancer #thankfulforthekindnessofstrangers #rolove #thankyouforbeingbetterbecauseofhim #imissmyspicymonkey This makes me sooooo happy. Can't wait to get home!!! @lynnstephens @quinn.thompson24 #ronan #fucancer #nosunshineallowed #becauseitswinter #imisswashington #movemeback @mommaozzzzz Somebody in this house must really love this dog to have covered him up with a blanket. Something tells me this was @quinn.thompson24. Sweet boy. Sweet Teddy. G'nite, world. #ronan #fucancer #nicestboysever #luckymama #missyouro #pearldidnotdothis
Follow

Get every new post delivered to your Inbox.

Join 23,877 other followers

%d bloggers like this: