Diamonds Are Not a Girl’s Best Friend

Ronan. Does it sometimes feel like I want to rain on everybody’s happy parade? Because I don’t. I am happy there are happy people out there. I am happy that most people out there do not know what it feels like to lose a child….. well, I may be taking the happy word a little too far, because you know I don’t know what happy feels like anymore. So let’s tell it like it is…. happy is not the right word. I am glad. Glad that most people won’t know this pain. But I really hope from reading this story, they get how lucky they are and they choose to live life a little differently. Just by knowing how it really is the small things in life, that matter the most. The sweet whispers of a child, the helping of a stranger, the butterfly kisses of the world, a child’s hand, laughter, a solid marriage, strong friendships, true friendships, loving yourself, soul mates, being kind to others, sparky eyes, and helping when you are in a position to do so. These are the things that matter in life. Nothing else.

I have some bereaved mommy confessions to make. I have a lot of them, but in order to confess them all, I would need to write a book. And maybe a good attorney to keep me out of jail. Let’s just start with a couple tonight. The one that makes me feel like such a jerk. Let’s call this one, “Confessions of a bereaved mommy who now hates to wear jewelry.” This didn’t happen until after I lost you. Until I started wearing your ashes around my neck. Until one day, I looked down at my diamond ring and got really mad. It made no sense. I did everything right. I married the right man. We loved each other. We had formed a house full of respect, love, compassion, strength and honesty. But now our baby boy, was dead. But I had the pretty jewelry. The jewelry was there, but you were not. I didn’t want the jewelry. I only wanted you. I slowly started to put all of my pretties away. Christmas and my birthday came and went. Guess what was given to me? A new pretty ring and matching earrings. Tears were cried over the gifts that I did not want. Your daddy only wanted to make me smile. But I cried instead. Take it away. I don’t want it. It’s too pretty for me to wear. And I am so ugly. Can’t you see how ugly and sad I am?? I don’t deserve to wear this pretty jewelry. I have Ronan, around my neck… I don’t need anything else. None of this stuff really matters and because life is not fair, the jewelry gets to stay and Ronan gets to die? I want the jewelry to die, instead. Your daddy insisted I keep it all. I did. I tried. I’ve worn the pretty ring and earrings once and it didn’t make me happy; it just makes me sad to look at. I put it away with the rest of my things. It came up tonight, again. I begged your daddy to take it all back. “I won’t wear it!” I told that daddy of yours. “But you are so thoughtful. Thank you. It really is the thought that counts, Daddy Woo….. but the only thing I need to wear…..is Ronan.” I’ll mix it up a bit, Ro. I’ll wear some inexpensive skull bracelets around my arms, your bracelets, or some cheap Forever 21 jewelry that is bright, but diamonds, gems, stones….. I can’t do it. I used to think diamonds were a girls best friend. I thought that, until I had my best friend taken away from me. A diamond cannot replace you. A diamond cannot bring you back. A diamond cannot make me smile. A diamond only makes me sad. I fight with this a lot. Because I know anything and everything your daddy does, comes from such a good place. So why can’t I just suck it up, smile, and wear the pretty things? I mean, really…. it could be so easy to do. If I were a fake. But that’s just one thing I’m not. I cannot suck it up and fake it with the stupid jewelry. This makes me feel like a big, fat jerk but I cannot look away from the lesson I’ve learned from all of this. Pretty jewelry, and I don’t care how much you have….. will never truly make a person happy. When everything else is stripped away, when the most important thing you’ve ever had in your life, is taken away and all you are left with is pretty jewelry….it will not mend a broken heart. It really just DOES NOT matter. It is not what is really important in life. It won’t stop the tears, sadness, emptiness, or loneliness one feels. It won’t bring back my smile or you. It is only a reflection of broken promises, hopes and dreams. It’s a facade. It is overcompensation for what was supposed to be, but never will be again.

I tried today. So freaking hard to have the HAPPIEST ROENTINE’S DAY EVER! I had some productive things to take care of. I had a meeting. I put on my game face. I did a lot of nice things, for others. I brought cupcakes to your Sharon at PCH. I had coffee with your other lovie and gave him our card. The smile it brought to his face, made my entire day. But his smile did not come with false words like most peoples do. His smile came with watery eyes and words like, “I know you are in excruciating pain…..” I know he knows, which makes my pain worse. I don’t like that other people hurt because of this. I never wanted to hurt anyone, Ro. Especially the one’s we love the most. It makes me sad.

Our new friend, Margarita, dropped off dinner because I have seem to have lost my cooking skills/desire. (Total inside joke for my Saline Bean…. (“I seemed to have lost my keeeeysssss”) I sat at our table, in your spot and opened the cards from your Daddy, then Quinn, then Liam, and finally, you. Your card sang. I could hardly listen to it because the tears just started pouring. I smiled through my tears, kissed your daddy and brothers and told them thank you.

I drew a hot bath. Your brother, Quinn is still sick and Ronan…. confession number 2 of the night…. I cannot take care of him. It’s all I’ve been doing since Saturday and I am about to crack. I think I’ve become a bad mom. I would have never had these feelings before losing you. I feel like a big weight is on my chest. I feel like I can’t breathe. I feel like I don’t want to be a wife or a mom anymore. Do normal people feel this way? Or is it just me? Have I gone mad? I think so. I must be mad. Insane. And sad. So very sad.

I tried to make it a very special day, Ro….. but all I did was think about you and Ben. Ben with the Bald Head. Ben who likes to eat sushi and listen to The Beatles. Ben who has a very sad mommy for the worst reason possible. I’ll attach Ben’s caring bridge tonight because I need everyone to send them their extra thoughts, love, prayers and whatever else you might do. I’m only sending them you, Ro. Only you.

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

Please think about Ro and Ben all you people out there, reading this. Please don’t just make this your bedtime story while you sit reading it, dripping in your diamonds or ice cream. Please do something to help us change this… for your kids, your grandkids, your neighbors, your friends, for anyone you love. Please help us change this, because as of now…. our pain is not yours. But bubbles can burst at anytime. Never trust a bubble.

Ro baby. It’s Ambien coma out tonight. I have not taken anything in a week. I have been sleeping like a baby, in your bed, without Ambien. I’ve been sleeping in my dead babies bed. I can’t believe this is true, but it is. Today was too much. Tonight is too much. I need a break. I just need a break from all the screaming, crying, laughing, T.V., conversations, vivid dreams of everyone but you. Where are you? Why won’t you visit me, in my dreams? I miss you so much. I’m so sorry, Ronan. I hope you are safe. I love you, baby doll.

xoxo

Valentine’s Day is for Suckers

Ronan. All I want for this Valentine’s Day (aka the STUPIDEST holiday ever) is you back. Since that cannot happen, I am going to work really hard to make ROentine’s Day, somewhat nice. I’ve ordered our cupcakes to drop off to our lovies at PCH tomorrow since that is what we did last year. I am going to do it again for you, this year. Your daddy asked if I wanted to go out tomorrow night. I looked at him like he had 12 heads and said, “Not unless you are letting me go out, armed with a machete.” He said he would not, so we will stay in. Although going out, with a machete sounds like much more fun. You know, I wonder if I will like ANY holiday again. Halloween still seems alright… because it was your favorite. I’ve never been a big fan of Valentine’s Day. Now, it seems extra stupid but that could just be because I am a mad/sad/angry/crazy mama now. Or it could just because I have always thought a holiday to celebrate, “LOVE,” was a commercialized scheme to buy overpriced red and puke me now pink shit. We should be celebrating love everyday. Especially if we have all of our kids. I don’t have that anymore so I get a hall pass to do whatever I want. So now, Valentine’s Day is for suckers and ROentine’s Day will take over. What will we do tomorrow? We will not wear pink. We will not wear Red. We will maybe wear all black because my heart now feels dead and black. But we will do nice things for other people. We will do something to make someone else, smile. We will drop off your cupcakes. We will not buy flowers which are a waste of money and all they do is DIE. Fuck flowers too. Add it to my list of things I hate. No flowers. Flowers are too pretty for our black broken soul.

Quinn has been sick the past couple of days. I’ve been playing the very patient, loving, nurturing mama role. Today, I’ve decided that I’ve had enough and only want you back so I can take care of you and your cancer. His cold/stomach ache is wearing thin on me. I had that moment, where I panicked and thought his stomach ache actually meant he has a mass in his tummy and it is cancer. I took him to the doctor to have him checked out. We were sent home with its nothing. We are of course, always skeptical as our mind now thinks it is the worst thing possible. Isn’t it fun, living in the world of your child died from cancer so now everyone is dying, too?? Love this life, Ro baby. It’s amazing.

What else has been going on???? Just the usual madness. Went hiking yesterday. Put on my Van Fuckin Halen shirt. Your daddy looked at me. “You cannot wear that hiking. Why do we always have to have these conversations?” I just looked at him. “Ronan is dead. I can do whatever I want. I’m wearing it hiking today.” I left the house in my shirt. Only one lady said something to me. She said, “Van who?” I said, “Van FUCKING Halen, lady!” She laughed. Ha! A stranger with a good sense of humor. I went with Mia’s mama, Sandra. So I had an extra reason to wear that shirt yesterday. Two cancer mama’s. One with a baby who is dead, the other mama with a baby who is in a wheelchair from her cancer treatments. I was prepared to defend us if we needed it. We didn’t. Everyone on that mountain knew better than to mess with us. They could probably see the anger/sadness in our eyes. I can guarantee you, we were the two most broken-hearted mama’s there. But it was nice to be with Sandra. We will have an unspoken bond/friendship for the rest of our lives. But I wish it didn’t happen this way.

Today, I stayed at home with Quinn. I was in the middle of my own pity party when a little text message popped up. Tears sprang to my eyes. No. NONONONONO. Fuck!!!!!!!!! Quinn watched me. “Mom. What’s wrong?” I just looked at him. “Nothing baby. Just a little sad. Just a sad day.” Your daddy came home to the rescue. I slipped out for a dark run. I had sent our favorite lovie an FUC (fuck you cancer) text which in turn, made my phone ring 10 minutes later.

Mr. Sparkly Eyes:”Where are you?”

“I’m running.” which was true but I was also running while crying hysterically so I know what I sounded like.

Mr. Sparkly Eyes: “I need you to stop. Stop running. Please go and sit down somewhere and listen to me.”

I sat. I listened. I also screamed, cried, sobbed, and yelled into the phone.

But I calmed down. I also laughed at something ridiculous that was said. I was also told not to give up. That FUC is nowhere close to being done. I stopped crying. I told him thank you. I looked up at the sky thanked you, for our lovie too. I promised you two I won’t ever give up. I won’t break my promise.

I continued my run. I didn’t listen to my music. I talked out loud to you instead. I begged you to keep working as hard as you are working…. I begged you to continue to push me. I begged you to watch over our little friend. I begged you to take care of some things up there, so I could take care of some things down here. I screamed how I never wanted this. How I only wanted you. I screamed that I would fix this because your death, will not be for nothing. I imagined living this life, with you again, but next time it happens and you get this disease, there will be a cure so you won’t have to die again. I just want you back now. I don’t want to have to wait to see you, until it is time.

I’m tired. I’m sad. But I don’t have a choice. This is not me, Ronan. I don’t want to do any of this, but I will. I will do this, because you are the one pushing me. I know this. I will listen to you for the rest of my life. I love you so much. I hope you are safe. Sweet dreams, baby doll.

xoxo

Soho and a Circus

Ro and I started off our morning the way we usually do. Cuddly and quiet. We sat and played in his bed and enjoyed our quiet time together. My mom came to the hospital with Tricia around 11. So happy to see my bestie. Ronan was not a happy camper at first, but he soon warmed up to Trish. It’s his whole I know my mommy is leaving thing that gets him into his little moods. I told him I was going home to shower and he agreed to let me. Thanks Sarg, as my New York Miss Macy likes to call him. I headed out the doors of Sloan with Trish and we went back to the RMH so I could shower and get ready for our few hours out. We figured out which Subway we needed to get on to get to SoHo… Woody  would have been SO proud. I am determined to master that thing by the time I leave here. We spent a few hours in Soho roaming the streets and had a bite to eat. It was so nice to catch up with my TT and to actually get to hear about things that are going on in her life. She is so concerned with mine that the phone conversations we have usually consist of what is going on with me and Ronan. I hate that. I hate that I feel like I am missing out on the little things that are going on with her, even if it is knowing what she is doing for lunch. I used to be so spoiled in that regard and would know what her entire day/night consisted of. I miss that so much. The simple things, the little things, the nothing is new because we talk 5 times a day about anything and everything and nothing. There is no more nothingness now as everything is wrapped up in this cancer cloud. The innocence has been lost forever in my life and I will never get it back. Neither will my best friend. But we keep holding on, telling each other that we will be stronger after all of this. Totally see a trip to Vietnam in our near future, TT 😉

After our Soho day out, we rushed back to RMH and I threw together my overnight bag so I could return to Sloan. My friend, Ed, emailed me a couple of weeks ago in regards to seeing a Broadway show. I told him about my mom and Trish coming into town and the next thing I knew we had tickets to “Billy Elliot.” Somebody he knows (a very kind person indeed) treated us to the show. THANK YOU, Ed’s friend:) I wasn’t able to go, due to Ro being in the hospital so I sent my mama, Trish, a woman, Barbra who runs this amazing organization called The Candlelighters in NYC, and a mom and daughter(who is 7 with cancer) to the show. They had an amazing time. It meant so much to me. This is my mom’s first trip to NYC and one of my wishes was for her to go to a show on Broadway. It should be something that everybody checks off their bucket list. It felt so great knowing that my mom was getting to do something that is so special to me; she deserves it so much. Thank you, Ed for organizing this. Thank you, Barbra, for taking such good care of my mom and Trish. They loved you and I cannot wait to spend more time with you. What you do for other cancer families is simply amazing.

I spent the night here with Ronan doing our usual thing. We made slime with the Childlife guys, played more Star Wars and I fed him dinner. We had a very special visit with my dear friend, Niki. It was comical and sad all at the same time. Niki, who is here with both of her young children put them in a cab and came to Sloan with cupcakes and dinner for us. I told Ronan that they were coming by and asked if I could go out to the elevators on our floor to say hi and grab our food. He said yes but was upset they couldn’t come in our room to see us. I left him in his bed and ran out to see Niki and the kids. I was greeted by the best giggles, smiles, hugs, and tears in the world. It was so nice to have my friend wrap her arms around me and hug me the way she does. She gives great hugs. I chatted with them for a few minutes then decided to go back and see if Ronan would come out to say hello. He agreed so I picked him up, and wheeled his “asspole,” out to the floor of our room. As I was wheeling it down the hall I was suddenly hit with a moment of panic wondering how Laely and Wesley would react to Ronan’s pole and the tubes coming out of his little body. My panic almost stopped me in my tracks but I then remembered feeling the same way over Laely seeing Ronan’s bald head for the first time and the conversation I had with Niki about it and how Laely didn’t even notice. To her, she was just seeing her friend, Ronan. She doesn’t get that he has cancer (they are the same age) she’s not scared of him… to her, he is the same little boy as always. The world is exactly as it should be in her eyes. Seeing those 3 kids tonight was the best medicine in the world. This is how our world works now, and we have to make the best of it. So tonight, Ronan got to see his friends through the glass doors of our floor as they could not come in and we could not go out. I held Ronan and watched as Laely and Wesley smushed their faces up to the doors and I got down on the ground and kissed them through the glass. We laughed, played, and loved. It was the best 10 minutes Ronan’s had in a very long time. Made both of our nights and we all parted way smiling.

Ronan and I then came back to our room to prepare for our nightly walk. Tonight though, he insisted we take all 4 of his guns with him and the very special balloons that were delivered to him from Dr. Maze today. I tried to talk him out of him out of taking the balloons with us, but he went into complete meltdown mode. (Thank you, Aubrey… you would have loved the smile those balloons got you:))) Ronan wins. I tied the bundle of the biggest, cutest, animal balloons in the world, onto his pole and I somehow managed to walk the halls with him for 30 minutes without breaking my neck. I couldn’t see a thing and everybody kept saying we looked like a circus. We got a lot of laughs tonight and went on a very special mission to try to find our nurse, Jen, who was hiding from us on the floor. She would jump out at random places and Ronan would blast her with 2 of the 4 guns that he made me carry. Very entertaining night around here. I swear, I’ll do anything to hear Ronan laugh these days.

After our walk, Ro was worn out so we came back to his room and snuggled in his bed. He kept telling me how much he loved me and we sang our nightly “Twinkle Twinkle Little Star,” together and he soon drifted off to sleep. I am listening to his little breaths as I sit beside him and write this. It’s my favorite part of the night, watching him sleep. We’ve been in the hospital for 3 weeks now, 21 days, 504 hours…. this is complete insanity and unfairness. I would give anything for this to all go away. I would give anything to be at home with my family, where I belong, taking care of my Liam who had to stay home from school today because he is sick with the flu. I would give anything to be the normal mom again. Except this time, I wouldn’t whine about my child throwing up all day due to the flu. I would be SO VERY THANKFUL. I cannot wait for the day that Ronan is well and this happens to me. One of my kids gets sick with only an ear infection, a cold, or the flu. It will be one of the best days of my life.

While I was sitting here writing tonight, I got an email from my friend, Jon who is cousins with the little girl, Phoebe I talk about sometimes on here. She was Ronan’s last roommate at Sloan and I just had lunch with her mom the other day. Jon came to visit us a couple of weeks ago before he took the train to visit Phoebe and her family. Love him.  I’ve been feeling pretty strong these past few days but a paragraph into Jon’s email and I was bawling like a baby. Not because I was sad, but because the things he wrote to me hit such a nerve. His words were filled with such truth and light and it was as if a little light bulb went off in my head. “DINGDINGDINGDING!!!!” I am doing this. Woody is doing this. Ronan is doing this. Phoebe is doing this.  We are all doing this and we are all going to get through this. We are too strong not to, Ronan is not going to let this cancer crap win and neither am I. Jonathon, somebody who did not know us at all, knew this after only spending a few days with us; just like the way I knew it about Phoebe within a few minutest of meeting her. She had this look in her eyes and I just knew she was going to come out the other side of this only more beautiful than ever. The same look that I see every time I look into those baby blues of Ronan’s. Fuck the statistics and fuck the odds. I refuse to listen to them because they have nothing to do with Ronan.

I’m ending my writing tonight with  Jonathon’s email (with his blessing) because his words are raw and real and give me strength. I love you and your beautiful family so much. Thank you for this gift tonight, my friend.

Goodnight to you all, my lovely souls. Thank you for all of your kind words, thoughts, prayers, support and love. But most of all, thank you for BELIEVING.

xoxo

Maya,

This is a quick note, not meritorious of a response. I’m writing tell you that you are a fucking badass. I’ve attempted to think of other ways to write this, less vulgar, more poetic, but fuck that.
I met a lot of folks at Sloan, visiting Phoebe for 6 months, or 8 months, or 10 months, or whatever the hell it was. And I worry about her every day, still. But the point of this note is to tell you that I knew you and Ro for only 4 days, and I saw that you were tired, and pushed against a wall, and still, more than anyone else I’d met, I knew in your eyes that you’d already won.
This was easy to see. I saw your resilience.
I don’t know anything about life. You called me out as a young fool, and you’re right, I know jack shit.
But I saw you, and Ro, your chests held high, and your smiles wide, and I felt your presence. Through those hideous turquoise plastic-felt curtains they threw between us, I felt your laughter, and your brilliant fuck-all attitude regarding the drivel we go through.
So this is one STRONG vote, from a kid in Chicago, saying laugh at their shit. Laugh at the crappy cots, and laugh at the exuberant candy-stripers, and laugh at the folks with FAKE smiles, because, let’s be frank, this is some bullshit. But that’s okay. Bullshit is bullshit is bullshit, and when I saw you, and Ro, and Woody, I saw the people I’d stake my livelihood on. I saw people I’d lay down in front of a train for.
Thanks for making me proud. Next time you feel that it’s too much, don’t worry. Just know that you’re already the most badass person I’ve ever met. You can do anything.
With love,

Jon