Be Bold Go GOLD!

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It’s time to… #BeBoldGoGold!

Get your glitter on! We’re kicking off Childhood Cancer Awareness Month with a bang & a sparkle! Throughout September, we’re turning ourselves into spicy, gold human billboards for childhood cancer awareness and want YOU to join us! Welcome to the #BeBoldGoGold Challenge!

HOW IT WORKS:

-You deck yourself out in your gold bling or glitter—jewelry, clothes, facepaint, you name it, you rock it. You head out into a public place. Talk to at least one person about childhood cancer—tell them a fact, like that 46 are diagnosed with cancer every day. The goal is to raise awareness, so talk to as many people as you can & encourage them to take the #BeBoldGoGold Challenge

-Film/photograph your adventure, and tag us in it! We’re reposting submissions to our new #BeBoldGoGold Instagram, Facebook, and Twitter. When you post your video/photo, nominate 3 people to carry out the challenge by tagging them. They have 48 hours after being tagged to get their gold on! Make sure to hashtag #BeBoldGoGold and #RTF.

-At the end of September, we’re giving a prize to whoever goes all out and makes the biggest impact (aka raises the most awareness)! We’ll also have #BeBoldGoGold shirts available to purchase (link coming soon). If you would prefer to donate instead of (or in addition to) the challenge, visit: http://www.theronanthompsonfoundation.com/ & share the link.

The Challenge kicks off August 29th… stay gold!

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.

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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.

 

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

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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

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Taylor, you will forever have my heart. Thank you for continuing to be such a voice for these kids. I love you.

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http://www.huffingtonpost.com/2014/03/24/taylor-swift-visits-cancer-patients_n_5021039.html

Thank you, Phoenix Magazine. I am truly honored to be a part of this.

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http://www.phoenixmag.com/best-of-the-valley/201311/maya-thompson—activist-mom/

“This is how dreams die.” -Woody Thompson

 

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I’m not going to go into why I titled this post this way tonight because not everything can be shared. Let’s just say Woody came home and said this to me tonight for a very good reason. All I am allowed to say is screw anybody that sets out to get rich off of kids with cancer. Fucking unreal.

 

Ronan. I cannot believe your baby sister has been here for 3 weeks today. It has went by so quickly. We still have been lying pretty low and I swear it feels like I have been doing nothing but nesting and breastfeeding her since she arrived. The quiet has been good for me. Or at least that is what I am telling myself for the time being. I do miss my crazy insane I’m losing my mind days. Those days got me through a lot of the darkness. I’m sure those days are not over yet… but for now I am just trying to soak in the peacefulness that you sister has brought into our lives. We’ve had a couple of out-of-town visitors. Your Nana came to help out with things and to meet Poppy. It was of course wonderful to have her here as it gave me a chance to do nothing but focus on your sister and let myself become somewhat human again. I was exhausted not from the lack of sleep I’ve been getting, but from the physical part of your sisters birth and the toll it took on my body. Now I am starting to feel somewhat normal again and I know a big part of it is due to the rest I was able to get with your Nana in town. She took a lot of the slack off and for one full week I didn’t have to touch the laundry or cook a thing. It was heaven and so very helpful.

Your Fairy RoMo popped into town just for a day to come and see her new god-daughter. That was a magical day indeed and so special that I can hardly put it into words what it was like to see the two of them finally meet. It was like for once, something in this world without you made sense for  a split second. If I can’t have you here to meet your Fairy RoMo, having Poppy here is the next best thing. We took Poppy all over with us for the day. We had a impromptu Poppy party that was thrown together by Stacy where we sat around at a cute little restaurant and had a nice lunch. It was pretty much her first time out in the world. After that, we took Poppy to your favorite restaurant, Chelsea’s Kitchen. We sat on the patio and went gagaga goo goo crazy eyes over your sister. As I was sitting there, I was taken back to the night of your funeral/celebration of life/one of the worst nights of my life. I was holding your sister and I remembered being there after we had your services. I thought to myself, how in the world could I have come here with a bunch of people the night of Ronan’s funeral? In my white dress looking like a zombie I’m sure. I hardly remember the night except I remember that somebody went and snapped my picture with Quinn on my lap and I remember smiling into the camera. How I even was able to form a smile is beyond me. I know I did it because Quinn was right there and I was trying to act somewhat normal like this is a fucking normal thing to do. Eating Tuna Tacos with a bunch of people after my child had just died and I sat in the front row listening to people talk about about you, holding your brothers hands, without tears streaming down my cheeks because I was too numb to feel anything. And now, here I am, sitting right back at that very same restaurant while holding your sister and kissing her sweet cheeks. How is this my reality again? I wanted to vomit right there on the spot but I just sat there quietly instead doing everything I could do in my power not to cry and hide underneath the table. I let the scene of that awful night play out in my head instead.

Every time I think about you and what has happened lately it’s like my mind is back to not being able to process it. My mind automatically goes to screaming, “FUUUUUUCCCCCKKKKK!!!!” in my head and that’s about it. Sometimes I cry. Sometimes I don’t. I always feel like I’ve been punched in the gut. I took your brothers back to their therapist last week just to check in with them. Quinn did not understand why he had to go because as he told your Nana, “If I needed to talk about something, I would just talk to my mom.” That was sweet to hear and made me feel good, but I still wanted Quinn to check in with Dr. Rachel. I went to talk to her after she met with Quinn. She said that he is doing really well. That the worry brain he used to have, seems to totally be gone. He also told her that he hasn’t seen me this happy in a long time. That stung a little bit. Happy? How can that be? It almost felt like a betrayal to you, Ronan. Don’t get me wrong, I do want your brothers to see  me this way. This is the way they deserve their mom to be… but it still felt weird to hear that. I just wasn’t ready for that word quite yet. It was like swallowing a really big horse pill and doing everything I could, not to choke on it. Dr. Rachel told me she feels like she does not need to see Quinn anymore, even though she would love to because she thinks he is such an amazing little guy, it’s not necessary at this point. Liam on the other hand, still needs some time with her. He is still pretty emotional about all of this. He tends to keep things to himself more so than Quinn does. We talked about making sure she gets some time with him before the shit storm of May 9th and all the lovely dates after, follow.

Your brothers are of course so in love with your sister. It is so strange to watch them with her, thinking they were doing the exact same thing with you after you were born and how you are just gone now. They both fight over who gets to hold her, kiss on her, and love on her. They both say the funniest things about her. The other day I had an outfit on her that was too big because she is so tiny that much of the stuff I have for her is big. The little tank top she had on kept sliding down and Quinn goes, “Mom, why isn’t she wearing a bra? People are going to see her privates.” I almost peed my pants over that one. The innocence at 9 years old melts my heart like crazy. They both can’t get over the fact that she doesn’t have teeth and Liam sits there with her and tries to teach her to talk. He’ll go over and over, “My name is Liam. L-I-A-M. You’re name is Poppy. P-O-P-P-Y.” It is the cutest thing ever. I’m sure if you were here you would be doing things like coloring on her with markers while I had my back turned or taking her hair and putting tooth paste in it or cutting it with scissors. You were always causing trouble in the best way possible.

Your daddy has been doing things with Poppy like playing her guitar. The other night I was sitting in bed with your sister listening to your daddy play to her. I said, “You need to learn a Taylor song for her.” He asked me which one and said, “Not Ronan. I love it, but I don’t think I can get through that one just quite yet.” I agreed with him and immediately went to one of my absolute favorite song of hers. That one from The Hunger Games soundtrack, “Safe and Sound.” Fast forward a week later and your daddy has that song down to a tee. I remember where I was the first time I heard it on the radio. We were in Maine for the 1 year anniversary of your death. Your daddy and brothers ran into a restaurant to pick up pizza and I was sitting in the car alone. That song came on and I started bawling like a baby. I thought it was so beautiful and could not understand how I had not heard it before. I sat there thinking how much I would have loved to sing this song to you as the words resonated with me so much. Now here we are and your baby sister will grow up with your daddy singing this song to her. Once again, the next best thing to actually having you physically here with us.

Our visitors have still been far and few. Your Sparkly came by last week for a bit just to check in. I showed him your room and how different it is now. I think it was hard for him to see, but he said it looked beautiful. It was hard for me to show him. After that, we mainly just sat on our couch and stared at your sister while catching up on some things. Sometimes a lot of words are not necessary. As we were sitting on our couch he asked where your Nana was. She had gone out to run some errands for me so she was not home and I told him how she has a hard time sitting still. He goes, “Now I know where you get it from.” I just smiled at that. He then goes, “Where is your mom sleeping? In Ronan’s room?” I paused for a minute and told him yes. You see this Ronan? This is why Sparkly gets it when not many other people do. Those 3 words, “in Ronan’s room,” meant so much to me. Sometimes the littlest things mean the most and that is a prime example. Sparkly quietly said how he can’t believe how much she looks like you. Cue tears here. End scene with them sloppily falling everywhere as I said I knew. That dimple. I still cannot get over it.

That’s my update for today. I’ve started hiking/running again. I know I’m supposed to wait 6 weeks postpartum, but they don’t call me a rebel for nothing, right little man? The exercise feels good. Today has been a little tough for a couple of different reasons, but mostly just because I seem to be missing you more than ever. Throw May on top of all of that and it’s a wonder I can even leave the house and function like a normal person at this point. I’m going to go for a run to blow off some of this never ending pain. I miss you. I love you. I hope you are safe. F U Cancer.

xoxo

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2 years ago today, I went to Hell

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Ronan. 2 years ago today, April 23rd, I went to Hell. I’ve been to Hell a few times in my life and it’s not the place that people think you go after you die and you have lived a life of sin. Hell to me is right here on earth. Hell to me are the things I have experienced while living; half alive. April 23, 2011, I went to Hell. It was your last scan day at Sloan Kettering. Fernanda was with me. I remember every detail about that day as if it had just happened yesterday. The waiting in the waiting room for Dr. Kusher to come out and read us your results. Watching my friend, Doriet, howl like an animal in that same waiting room as she had just been given the news that there was nothing left to do for her daughter, Esther. Grabbing Doriet as she walked by and squeezing her so tightly as I whispered in her ear that we would find something or someone to help. Looking at Fernanda and saying to her, “They have to walk out of here having just being given the news that there is nothing left to do for their daughter. How are they going to leave here? How can that just be it?” I had no clue that 20 minutes later I would be in the exact same situation.

Fernanda and I sat and waited. Dr. Kushner came bursting through the doors, breezing right past us. Fernanda whispered to me, “There he is! Ask him!” I watched his body movements, the way he avoided eye contact with me and rushed right past me as if he didn’t see me waiting there. I knew he did. My stomach dropped to the floor. My name was called to come back and get you as you were waking up from your anesthesia. I couldn’t wait to scoop you back up into my arms, safe and sound. You were groggy, but so happy to see me. You were upset about the bone aspirations in both of your little hip bones asking me why I let them do that to you. I rocked you out back out in the waiting room to try to calm you down. Then the sign of all signs that everything was about to come crashing down. That damn necklace. My “lucky,” necklace that I had worn religiously on every single scan day, broke in two and went falling on the floor. I watched the necklace fall to the floor in slow motion. I swear time stopped. “Dr. Kushner will see you now!” we were told. I grabbed you, Fernanda followed me, and off we went. I felt like I was walking the plank of a pirate ship with a big sword in my back, waiting to be dumped into a sea of blood hungry sharks.

Dr. Kushner was waiting to see us alright, but not in the way that I wanted. He paced back and forth like a caged animal. He couldn’t or wouldn’t look me in the eyes. “The treatment. The treatment didn’t work.” I sat there, shaking, as you played on the floor with some cars or something. I don’t remember much after this except saying to him, “O.k. well, I know you have a plan, because you said you wouldn’t give up on my child, so I’m going to go back to Phoenix, until you figure out what is next.” He called your daddy too at some point. I don’t remember what was said. I remember feeling like my legs were cement and I couldn’t get up off of the chair. Somehow I managed. I also managed to give that Dr. Kusher a hug and say “Thank you. You are a good man.” I said this to a man who was too much of a coward to give me the decency of looking me in the eyes and just simply telling me he was sorry. I picked you up and off we went, somehow managing to make it back to the Ronald McDonald House to pack up our entire life that we had created in a matter of hours to hop on the soonest fight out of there. I did none of this. I threw Coconut Water at the wall and watched it explode everywhere and I told you we were having a Pop throwing party as I sat on the floor with you and Fernanda and we let all kinds of soda and water explode everywhere as we threw it against the wall and all over the floor. You thought this was funny. I did too as I lost a piece of my mind that day, never to get it back again and I honestly don’t miss it at all.

I sat a the basement somewhere while Fernanda stayed with you and let you chase her about. I screamed and cried into the phone to our Mr. Sparkly Eyes. He could barely talk as he know nothing was going to calm me down. I remember him just begging me to get it together, so I could get you home and he promised me we would go from there. I think I said the words, “No,no,no,no,no,no,” over and over again as I could not even form a sentence at this point. Valium somehow came into play I think. The next thing I knew our 10 suitcases that came out of thin air were packed and we somehow managed to get a late night flight out of New York home to Phoenix. Again, not me. That would be the magic of Fernanda. Only she could somehow manage to orchestrate something of that magnitude in the middle of the biggest shit storm of both of our lives. Somehow we survived scan day from Hell to be plopped back to Phoenix. I remember nothing after this. I don’t remember the reunion with your daddy and how the fuck that conversation went. I don’t remember getting home to our house and explaining to your brothers what was happening. It’s as if my memory of the next few days has been erased. I guess that happens when you suffer from something as traumatic as what had just happened in New York. Part of the PTSD I suppose.

Fast forward and here I am 2 years later having survived one of my many trips to Hell and back. Here I am having spent all day today, thinking about you and what I was doing 2 years ago as I was still fighting with everything I had, to save you. Today, I spent much of the day like I have been since your sister was born. Rocking her. Snuggling her. Feeding her. Taking care of her. Listening to my head as it screams for you, but the screaming is a little less now that she is here. Wondering if your sister is you, reincarnated. Is that a real thing? I don’t know, but it crosses my mind. What if it were. How would I feel about that, if it were? Would it make this pain, any less? I don’t know. It’s because of that dimple of hers that I can’t stop thinking of this. That secret dimple that you had on the right side of your face down by your chin. The tiny little dimple that only showed up when you smiled. I think that she has it too and it is freaking me out and making my mind think insane things like, “What if this is Ronan’s way of coming back to me because he saw how much pain I was in and he couldn’t take it anymore so he came back as a baby girl…” You know me and my imagination… wild and crazy. Then there is the other little voice in my head saying, “Don’t be crazy. This is Poppy not Ronan, but she is here to save you too, but in her very own way. Her magical, special, Poppy way.” Whatever the real answer is, Ronan, I’ll take it. Because either way is a gift from you. I know this.

Your Nana is here and it has been wonderful. She is so helpful to me and I love watching her bond with your sister. She is such a good Nana. It is all bittersweet, but I know you would want it this way. You would want us to be happy as much as we are able to, without you here. Tomorrow, your Fairy RoMo is popping into town, just to take a peek at your sister and meet her god-daughter. I am so beyond excited to see her and introduce the two of them. I know it will be love at first sight. I only wished she could have met you as well. Tomorrow, I feel like she will be meeting a piece of you and it is going to be such a beautiful thing to see. Your little sister is one lucky girl to have a Godmother like her as she truly is one in a million.

Alright little man. I’m sorry I haven’t been writing, but things have been busy, yet calm. We are all truly just soaking in this little window of time with your sister as I know how fast the newborn stage goes by. She is a dream and is such a good baby. We are all amazed at how she doesn’t cry. Ever. She is the most peaceful little thing. I guess somebody must have told her how badly we were all needing a little peace in our lives. Thanks, baby doll. I miss you. I love you. I hope you are safe. Sweet dreams

xoxo

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I was never going to be ready for today.

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Ronan. I was not prepared for today. I was not ready for today. But today happened anyway. It started off pretty normal. A normal check up at Dr. Schwartz’s office. I didn’t even have to see her, I just had to sit in a chair for a good 45 minutes so Poppy’s heartbeat and movements could be monitored. Just routine stuff that I’m having to do, twice a week now. It’s always quiet in this room and it’s easy for me to relax and get lost in my thoughts. Today, I thought alright. Of course about you. I was sitting there listening to your sister’s heart beat and she seemed to be moving non stop the entire time. I know she doesn’t have much room and there, but she doesn’t seem to care. Her movements are strong and never seem to stop. I had a flashback to that time I was at Sloan with you. We were back in a room and they had you hooked up to a machine  where we had to listen and track your heart for a couple of hours. I remember being up on the bed with you, holding you and trying to keep you entertained. You soon fell asleep in my arms. The next thing I knew, I was laying there with you but I was silently crying. I remember I was so overcome with emotion over sitting there listening to your little heartbeat. It was the most beautiful sound I had ever heard and I knew how lucky I was that it was still beating. We didn’t know at this time that your cancer was spreading, but I was just so grateful for your little beating heart. I hated that you were strapped up to a monitor when you should have been just out and about playing like a normal, healthy 3-year-old but I found the beauty in our day, anyway. I’ll never forget that day with you. It sticks out in my mind all the time. Today, listening to your Poppy sister I was taken right back to that day and the tears seemed endless.

I got out of my doctor’s appointment after a couple of hours. They were way behind today and I came home for a sight that I was not ready for. Your daddy and I have talked for a couple of weeks about taking the furniture out of your room to have it refinished to the color that will match Poppy’s crib. I came home to your daddy who had informed me that the people refinishing your things, would be at our house to pick everything up in a few hours. This meant drawers had to be emptied, toys dumped out, clothes moved, stuffed animals pulled out from the storage area under you bed, etc…Your daddy asked if I could empty out your dresser. I started crying and simply just told him, “No.” He did it. He did most of it. By the time the people got to our house your little room had been completely torn apart and I could do nothing but sit on the couch and cry. The lady working with us could not have been sweeter as your daddy had explained our situation to her on the phone so she understood what was going on. She told me how she had some bad luck, too as she lost one of her sons at 17 and also one as an infant. I could hardly get two words out as I was trying my hardest to somewhat control my sobbing. Your daddy was the one who told her he was sorry and did the rest of the talking as I just sat there in a cry fest trance. Your little room that I’m pretty sure I had made up in my mind, would never be touched, has totally been taken apart. I know we are going to put your things back but it still does not make any of this easier.

I sat in your room for a long time today. On one of your mattresses. I sat on the phone and cried to the couple of people I talked to. Thanks, Meg and Stace. I told them both how I was staring at your side of the empty room where your bed once was but now the only thing left there were a few of your Star Wars guys that had clearly fallen off of your bed because you would always insist of sleeping with 50 of them. I texted with Fernanda a bit. She is going to come over tomorrow to help me figure out how we are going to put your room back together while making it Poppy friendly, too. I am lucky to have such good friends who are truly there for me at all times. I am so lucky in that regard and so thankful.

The past couple of days, my emotions have been building up. It was your Sparky’s birthday. I remember his birthday from a couple of years ago when we were in New York. You made me take an extra special picture of you to send to him just for his day. It’s one of my favorite pictures of you, even though your body was all marked up with a Sharpie Pen from your radiation and your little arm was hurting so badly that they tried to make you wear it in a sling which you of course refused to do. The smile on your face was priceless and your eyes were so bright and beautiful as I was taking this picture. They were shining like diamonds. You were so excited to take this picture and send it to him. We called to tell him, “Happy Birthday!!” and I remember you saying this in your squeaky little voice that was full of so much love and happiness. As always, I did my best to try not to be sad on his birthday but I wished more than anything that it was you sitting by my side as I watched your Sparkly open up our gift and two cards. One card from me and one from the both of us. I of course signed your name on the card I picked out from you, to him. You would have liked it and called the card, “cute.” I sat and watched your Sparkly read our words and open our gift. I watched as he chuckled at something while the corners of his eyes got wet. It’s a sight I’m so used to seeing with him. That bittersweet happiness that I know all too well.  I did my best on his day, for you but it was still hard to hold it together without you by my side. I know your Poppy sister will help with things like this when she makes her little entrance into the world. Maybe days like this will become easier and help with the sadness because the happiness I know she is going to make others feel is going to be infectious. Next year it will be nice to have her by my side on days like your Sparkly’s birthday.

I spent much of the day and evening crying. Today was a hard day to get through. I literally went to bed telling myself, “You made it through today and you didn’t die. The pain didn’t kill you.” I’m always so amazed that it doesn’t. The sick joke is I know what I’m waking up to tomorrow and how none of this ever goes away. I don’t get to escape this. I still have to wake up to your totally disassembled bedroom that I said I would never touch. I was never going to be ready for today. You can never be ready for something like this.

I’m tired but restless. Of course, I’m not sleeping well. It’s because of my not sleeping well at night that I’ve noticed that we have this fucking bird outside of our bedroom that seriously sings all day and all night long. I don’t understand this as it’s only something that has started a couple of months ago. What kind of bird, sings all night long? It’s annoying to me and I don’t feel like hearing it’s song. Tweety bird, tweety bird please shut up. Between that and your empty room I’m surprised I’m not outside stalking this bird with my BB gun. That is totally a very Maya Danger thing that would have happened last year when I was in my Danger Baby phase. I’ve been stalking this bird to try to find out where it is hiding but I’ve only been stalking from it from the inside of our house. My body is too tired to truly investigate. Stupid bird.

Time to go, little man. It’s late and I need to try to get a little sleep before I have to start today all over again, tomorrow.

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

xoxo

P.S. Thank you, Taylor for what you did tonight. You are such a light that keeps me going even on my hardest of days. I know Ronan is so proud of you for all you are doing. So am I. I love you.

 

Your Happy Birthday Sparkly smile. I love you.

Your Happy Birthday Sparkly smile. I love you.

A Phoebe Update

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http://www.caringbridge.org/visit/phoebe26/journal

“Why? Because I’m scared.”

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Ronan. It’s official. For as much as I don’t want to slow down, I have to slow down. My body is screaming at me with everything it has to just stop. I have never been more bloody exhausted in my life. Your sister is so heavy that even just walking around trying to do normal things leaves me breathless and feeling like I want to fall over. Not cool. This is not how I roll. I am glad I crammed in every last thing I could before this hit me such as my little New York trip, foundation things, appointment things, etc… There is no way I could have gone to New York now. I can hardly get out of bed to tackle our laundry situation over here or keep up with the cooking/taking care of your brothers. All my body wants to do is rest/sleep. Otherwise known as my personal hell.

I spent the weekend taking it easy. I’ve had a bad cold to go along with this pregnancy that has wiped me out even more. I know this is just another way my body is telling me enough is enough. Your Papa Jim has been in town since Friday. He’s been sleeping in your room which you know always brings me comfort. Just the thought of knowing somebody is in your little room, brings me a sense of peace. I love it even more when I catch your brothers playing in there, with all of your Star Wars toys. They are still young enough to enjoy them every once in a while. I spent all day Saturday at my happy place, otherwise known as your brothers basketball games. They had games starting at 8 a.m. back to back to back. I felt like crap but there was no way I was going to miss their games. One of my favorite things in life now is watching those two play basketball. You would be so proud of them and how well they are doing, Ronan. Your two brothers constantly leave me amazed. They are such good sweet souls, even after all of this. I am so lucky to have them.

One of the things I did with Dr. Jo on Friday was go over our timeline that we sat together and wrote out about a year ago. It started from your diagnoses and ended the morning you died. You know I don’t have much of a memory of anything and one of the things I really struggle with is regret. She asked me to change anything I wanted to in regards to things I would have done differently with you and your treatment. Of course I changed things. A lot of things. I would actually like to change almost everything because what if by changing one little thing, your outcome would have been different? We will never know this. Your daddy still swears to me that your disease was so aggressive that it wouldn’t have mattered. It matters to me and I don’t know that I will ever be able to forgive myself, Ronan. I don’t care if at the end of the day, you would have died no matter what we did. I will forever hold on to you were my child and I should have been able to protect you and save you from anything and everything. Even stupid fucking cancer.

The first thing I told Dr. Jo I would change was I wouldn’t have had you die at all. Obviously. If only it were that easy, right? We then moved on and went over the doctors, hospitals, treatments and ended all things at the Ryan House. I sat there and sobbed while talking about this and told her I wish I would have never taken you there. Looking back now, I understand it was what we needed to do, to get your pain under control because feeding you morphine every hour on the hour was just not cutting it. But that little voice in my head will always go to the very painful place of at the end of the day, after everything you went through, you just wanted to be at home, in your house and I should have listened to you and not everyone else. It’s the least I could have done as your mama. I know a big part of not having you die at home was to protect Liam and Quinn, but I really don’t think having you here, would have hurt them as much as we thought it would have. They were with us when you died, it just happened to be at some strange place that it all happened. They will always have that memory of you there and I don’t think having you away, out of our house, will make that memory any better for them. How could anything possibly make the memory of their little brother, the most precious thing on earth to them dying, any better? I told Dr. Jo how I vaguely remember hospice meeting us at the airport after we had returned back from Philadelphia when we were told there was nothing else that could be done for you. How I had a stranger riding in our car with us and I remember being so angry because I felt like I had no control over anything and now there was a stranger riding in my car with us whom I had never even seen let alone talked to in my life. I remember hospice coming to our house and I told your daddy to get them out. End of story. I didn’t care who they were or why they were here, all I knew was that nobody really explained anything to me at all but I was just expected to understand everything that was happening. I told Dr. Jo I wish it had been her with me at this time. Because I know Dr. Jo. I know she knows better than anyone how to handle this very delicate situation. She would have done things in such a way that I would have been open to her. She would have had the decency to gently first of all, ASK me if it would be alright for her to be with us, to help us with anything that we might need or not understand. She would have ASKED to meet you and not just pretended like you were a baby who was already dead. She would have cried with me and understood my pain in only a way that a mother whom has also lost a child, can do so. Her expertise on all of this would not just come from a book or a class she took. It comes from so much more than that and I know I would have been able to feel all of that. I wished it would have been her, sitting with me, helping me, explaining to me everything that was happening/ going to happen. I wish it would have been her that would have told me I could have spent as much time with you as I wanted to after you died. That there was no rush to have your little body placed in a bag and wheeled away, never to be seen again. I wish it would have been her to have sat and wept with me, held me and helped me find my way back out into this bright, bright world in her oh so gentle way. It certainly would not have been her saying, “See you later, have a great summer,” never to really be checked on again. I wish I would have found Dr. Jo before you died. It did not happen this way, Ronan and because of this, I know one thing for sure. Dr. Jo could not be with me for your death but she will be with me for the birth of your baby sister. I’ve been thinking about this for a long time. I’ve talked to your daddy about it. Our conversation was brief and simple. I was laying in bed, crying I think.

Me: “Woody. I need to ask you something.”

Him: “What?”

Me: “I want Jo in the room with us when Poppy is born.”

Him: “Why? You are always so calm and you always do great.”

Me: (trying not to get frustrated because I don’t think your daddy understands the depth of this for me, having another child after having a dead child and how mentally hard this is) “I have always done great when I didn’t have a dead child. This is completely different now.”

And then I just said it, plain as can be.

“Because I’m scared.”

Him: “O.k. whatever you want.”

Me: “Thank you.”

I called Dr. Jo today. I asked her. She started crying on the phone. She said she would be honored. I told her thank you. That I don’t know if I can do this without her. She went on and on about how if I change my mind at any point, she will totally understand. I said I knew that. As of now, this is my plan. Did I also mention that Dr. Jo is a doula? Kick ass, Dr. Jo. I see this as a win/win. Not only is she here to help me with death, but also with life. She has been my lifeline through all of this, Ronan. I only wish there were 500 more of her to go around to help all the parents out there, dealing with the loss of a child. Nobody gets this the way she does. She has such a gift that is beyond this world.

It takes a lot for me to feel scared in this world anymore. I am scared for the birth of your sister. The range of emotions I am feeling come with such an overwhelming feeling of sadness and happiness and I know I need her to help me through this. I know when I need to ask for help and I need help with this from both you and her. I know with the two of you things will be a little less scary. In my heart of hearts, I know you are going to make sure Poppy gets here safe and sound. I will always trust in you and the way you are guiding me. I think you want Dr. Jo in the room with me just as much as I do. She should have known you, but since she didn’t she will know about you through the eyes of your brothers, the tears in my eyes, and the birth of your baby sister. Such a beautiful gift she is going to be, Ronan. Thank you for her.

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

xoxo

 

  • Instagram is my BFF

    Meeeoowww. Hiding from the world. #ronan #fucancer #youcantfindme #bookporn #booksfordaaayyyssss #myhappyplace Where was the Gold for all the kids in September who are fighting cancer? Gee, thanks @todayshow. #ronan #beboldgogold #kidsgetcancertoo I took Pearl to the library today. I don't think she's going to be allowed back. #ronan #fucancer #fuckinpearl #blacksheep #rebel #kickedout #bannedforlife #boozebeforebooks
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