Tag: New friends

Cancer is a whore. My friend, Robyn, told me so.

 

Ronan. I am tired. Living this life without you is exhausting. I hardly remember the days when I used to think you wore me out due to your never-ending energy. I used to think taking care of you was a lot of work. Well, let me assure you, taking care of a dead child is 100 times more exhausting. It is 100 times more exhausting than the temper tantrums, throwing up, crying, teaching, arguing, potty training, bathing, feeding, reading, singing, playing, snotty noses, laughing, loving, and all the other beautiful things that come with raising a child. Taking care of a dead child is 24 hours of pure and non-stop torture that on days like today, leaves me feeling more exhausted than running a fucking marathon.

We are still in Washington. I do well here. It’s no secret. My heart is not in AZ. I won’t live there forever. There will come a day when I will leave. Your daddy knows this. He is on board with this. He will go wherever we decide to go, as a family. I’ve already thrown out a few places as options. It’s a decision we have both made. My heart does not belong in that state. It never has. I have only a couple of things keeping me there, as of now. But those couple of things mean too much to me to leave. As long as they are there, I will stay there. I’m not saying what or who they are, but I know you know. Because you’ve always known. Right now, we are there because it is where we need to be. Because right now it is what is best for Liam and Quinn. I can put myself aside for the sake of the two of them for the time being. I can sacrifice myself for those boys’ no questions asked. But Phoenix leaves me feeling restless and chaotic. The only peace I get is when I am hiking up a mountain in 110 degree weather. That tells me right there, that there is a problem. I know what my main problem is… that being not having you anymore. But Phoenix only seems to add fuel to the fire. I can make due for now. I can be thankful that we have your Nana’s house to come to so that I can have a little peace and quiet. I can be thankful for things like rainy summer days, scratches from sticker bushes, muddy feet from exploring the never-ending rivers/streams/ponds that surround us… I can be thankful that your brothers have this place to come to, to experience childhood the way it should be. Simple, calm, and beautiful. You don’t get much more beautiful than this state. I have always thought so. It makes the 8 months of rain, totally worth it. But I am also a big fan of the rain so I may be biased. I am an even bigger fan now because I feel like my body and soul are in a constant state of rain due to all of my tears. It’s nice to not wake up to the blinding freaking sun every single day. The mornings here are damp and foggy. The air is clean. The sun comes out just in time to kiss my lips for a few hours and then it goes back to sleep. My heaven.

I’ve been doing a lot of playing with your brothers. So much playing that we are all 3 falling into bed and we hardly have the energy to say goodnight to one another and you, before it’s lights out. That never happens in AZ. It’s been a constant stream of baseball, board games, swinging, basketball, and Papa time. That Papa time is my favorite time of all. Your papa and I took Liam and Quinn to Mount St. Helen’s yesterday. The world that I watch Liam and Quinn slip into around him is magical. It’s one of my favorite places to be. The laugher and adventures are endless. He is the youngest 72-year-old that I have ever known. It’s like I’m watching 3 kids play whenever I am with him. He was one of your best friends and vise versa. He misses you so much. Yesterday, when we stopped to explore a little bit, we were throwing some rocks into the water. There were a ton of sticks and wood pieces floating around. The kind that you used to make your papa load the back of his truck up with. “More papa, more!” you used to yell to him. We would always bring home 10-20 pieces of wood and sticks for you. Your papa found a really good one yesterday and said, “I’d better get this one, for Ronie.” “Ronie, Ronie, Macaroni!” he would often sing to you. I just looked at him and said thank you. What I really meant was thank you for being the best step-dad ever. For being the best papa ever. For being the best friend to my 3 boys. For never forgetting you, Ronie, and for never being afraid to talk about you, sometimes like you are still here. I know how hard this has been for him. He loves you so much. He would have traded places with you, in a heartbeat. I know he is constantly asking himself why you and not him. We all are baby boy; we all are.

I think about you all the time. I told your Sparkly that I swore I think about you, 24 hours a day. He said he knew. I know he knows this because he thinks of you everyday too. He misses you. I have been thinking about a lot of things lately, trying to give myself some peace of mind which won’t ever happen, but I need just a sliver of it, to get me through this. For me to say that I 100% know where you are, who you are with, and what you are doing is something I am not willing to eat up on a plate of bullshit. Hello! Am I the only crazy one out there, who will admit this?!! NOBODY REALLY KNOWS where you are, Ro baby. WTF! I can fully respect what people believe… but I am so tired of hearing, “Oh, hello… I am 100% sure of where Ronan is. He is safe and happy and he is where he should be. ” Fuck off people. That is not the right way to approach me. Why don’t you just be honest and say, “Oh, hello… I don’t 100% know where Ronan is, but this is what I believe.” Thank you. I can deal with the “I believe part.” I don’t have a problem with the “I believe part.” I won’t even tell you to fuck off. I will politely smile and tell you thank you, instead. I just want some freaking honesty. Is that too much to ask? I don’t think so. Unless you are officially hanging out in heaven, with Ronan, dancing on clouds and then you get to come back here and tell me about it, and put it on a DVD for me to watch…. I am not going to 100% be sure of anything. That’s honest. That’s real. It fucking sucks but I am not willing to sugar coat the life and death of my child just because it makes other people comfortable.

I know what I think I believe. I know what I think I don’t believe. I know that I am still learning and growing, but no matter how angry I get, I still have a shred of faith that I hold on to. It’s dear to me no matter how different or how out of the norm it is. I don’t like normal. I grew up with a dad who used to mediate on top of compost piles. Is that weird? Maybe to some. It wasn’t weird to me. It was his way of teaching me to love nature and the world around us, but mostly to connect to ourselves, our hearts and our spirituality. I know that my beliefs are ever-changing and ever-growing. What I believe today, may not be the same, tomorrow. I find that fascinating and it makes me proud that I have the strength to question everything out there when I could easily just believe in it all, instead. If I want to question if the sky is blue and the grass is green, that is my business. Nobody has the right to try to take that away from me. Not even God himself.

I found a picture of you today, Ronie. I don’t know if I’ve ever called you, Ronie, on here, P.S. Which is weird… because I used to call you that all of the time. Anyway, it was your preschool picture. The one where I can vividly recall the day so well which is unusual for me due to not having much of a memory anymore. You are so beautiful. I put you in one of your favorite orange shirts. Your hair almost matched it in the picture as the color of your hair was so unusual. A copper color almost. Blonder in the summer, but copper was the true color of that mop of hair of yours. I stared at that picture for a long time, before tears sprang to my eyes. I sent a couple of text messages to Dr. JoRo and to my new friend, Robyn. I haven’t really talked about Robyn yet because it just hasn’t been the right time. It’s only been within the last few weeks that we have started to get to know each other. Even though we have more in common than I would like. We both have dead babies thanks to that fuckwad, Neuroblastoma. We met at the NB conference in Austin, Texas. We went out afterwords as a group and I quietly sat back and watched this girl who continued to crack up the entire table with her witty comebacks, smart mouth and silent gun shooting laughter (because she says no sound comes out when she laughs so she shoots guns with her hands instead) Ummmm… who is this girl and can I please be her friend? I got to know her story a bit. I later learned that she not only has one dead child, but two as she had twins after her son, Ezra, and one of them, Price, died due to complications from a very early delivery. It took me a while to wrap my head around this. Wait, two dead babies? Her? Not possible. Not this drop dead gorgeous, funny, young thing sitting right in front of me. Not this gorgeous creature who looks like she is about 19, but has the pain in her eyes of someone who is 3 times her age. But she looks happy. And she can laugh and be carefree and funny! All of the voices in my head were saying, “Whoa. What’s wrong with you? This girl is alright. This girl can function in the normal world. And she has 2 dead babies! Why can’t you?” I left Texas being totally intrigued by this Little Miss Robyn thing. Our friendship has now developed over a series of Instagram/Twitter/Facebook/Texting love. I told her that it had to be the two of you, you and Ezra, who are the one’s making our friendship blossom. Because you know we can help each other, through this. I truly think this is the case. Now that I’ve gotten to know Robyn a little better, I can see that she still hurts so badly from losing her babies. That I know she thinks about them as much as I do you. That will never change. Things will never be alright or better. They are just different. And somedays, different can be o.k. and you can still smile and laugh, but the pain never fades away. As she puts it, it moves from your skin to your bones. It never goes away. I sent Robyn that text below tonight. She called cancer, a whore! I told you we were meant to be friends!

I think we are going to make a good team, me, you, your daddy, Robyn, Ezra and her husband, Kyle. I kind of think that Neuroblastoma, doesn’t really stand a chance. I am sorry that any of us have to know this life. I wish it wasn’t this way. Robyn says to tell you, “Hey,” though. Thank both you and Ezra, for helping us find each other. Please be sure to get into some trouble together. I’ll bet you are the best of friends.

I’m ending this novel here tonight, Ro baby. Much to say still but my eyes are red, blurry and sleepy. I miss you. I love you. I hope you are safe. I am always so sorry. Sweet dreams, baby boy. And of course it is now pouring down rain with a side of extra angry, thunder and lightening. Thank you. I hate being apart from you, just as much as you do.

xoxo

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Whipped Cream Kisses for Dessert

Ro baby. What in the world happened last night and today that I can exist on only 4 hours of sleep, like it’s no big deal? Oh, I know….your death. This coming from a girl who used to easily sleep 8 to 10 hours a night. Sometimes 12. I was totally that girl, that mom, that me. Not anymore. The peacefulness of sleep is hard to come by, especially on nights like last night where nothing out of the ordinary happens; just reality. Last night I fought sleep until 6 a.m. I did a lot of talking to myself, played a lot of musical beds, sent some emails, posted some stuff on FB about zombies and how 4 a.m. sucks. 4 a.m. sucks, but 6 a.m. when the birds start to chirp, is even worse. 6 a.m. and you know enough is enough, so you pop an Ambien because nothing else works. I slept from about 6:20-10 a.m. I got up, showered and my mind was racing with things that I needed to do, for your foundation. So much stuff that it was making my head spin. I went to my little Starbucks office and worked away not even feeling the hangover from the lack of sleep. I was really productive during my hours at the Starbucks office, despite the extra annoying, really bad soft porn music that blared from the speakers. I got recognized by a RoFan of yours which I was really surprised by because I only go to this Starbucks for the reason that I won’t run into anyone. It’s my secret Starbucks office where nobody knows my name. Or so I thought. Today, this girl was sitting by me for a while with a boyfriend or boy friend of hers. They got up and left and I was so into what I was doing, that I hardly noticed. A minute later I noticed the girl as she came walking back through the doors and headed straight for me. I looked up just as her soft eyes asked if I was Maya. I smiled and said yes. She told me she reads this blog. I asked her how long she had been reading it for and how she found out about you. She said she heard about you when we were on Channel 12, about needing an airplane to get you to New York. Whoa. What a sweet, loyal dolly. She’s been reading for a long time. She told me how sorry she was. I tried not to get choked up as I looked into the eyes of this girl who I swear could have been 17. I gave her a bunch of your bracelets and RoCards. She seemed so nervous and shy. I told her thanks for saying hello. I meant it. She made me smile.

Margarita stopped by the F U Cancer Starbucks office to say hi and help me with some things. Turns out, by the time she arrived my brain had turned to mush. I’m pretty sure she was looking into the eyes of a zombie but she still managed to make me laugh. A real laugh too which only a few people in my life seem to be able to make me do anymore. She being one of them. I had filled out an application for something (which will remain TOP SECRET classified information until more comes of it) and my application totally sucked balls. I filled it out last night during my insomnia marathon. Margarita looked it over and goes, “Yeah… I think we can do better than this.” HA! There is nothing I appreciate more than someone who can tell it like it is. She may have saved our secret mission today because if I would have actually sent in what I had filled out, I can guarantee you it would have went right into some fancy NYC recycling bin. Thanks, Rita. Rawr! You are a RoSaver! The rest of the day/evening was spent with your Luke, Daddy and brothers. We all went to the batting cages and hit some balls. I tried to enjoy it but as you know, when going to places like this I am constantly looking over my shoulder for you to appear. I don’t think I’ll ever stop looking for you. I watched your brothers as they ran around full of so much love and life, just like they should be. I closed my eyes and imagined you were there with us and for a split second, everything in the world was perfect. Simple perfection was ripped to shreds by the reality of Hell when the giggles of a child nearby forced me to open my eyes, just to make sure it wasn’t you. It wasn’t. Fucking fuck.

These are the things I’ve seen in the past 24 hours that I just can’t deal with because it is as if salt is being poured into an open wound. The real world. The real, non bereaved, I didn’t lose a Ronan and you did world. A lunch in the middle of the day at your favorite restaurant. A lunch with the best company in the world. A new friend and an even newer friend on the most delicious day (sunny. breezy. chilly. not rainy. sunny was delicious before you died) We sat outside as the breeze whispered in my ear and I swear I could hear your voice. My eyes gazed up from the menu only to fall on the table nearby. A mom. A dad. A little boy, around 3. A new baby. The little boy, roams carelessly around the tables. Almost in a mocking sort of way that only a grieving mother would feel. The parents look on, and drink their bottle of wine in the middle of the day. A whole big bottle of red wine. Another one is ordered. They pay no attention to the little boy as he wanders off, far off. Not far enough to get swiped up, but maybe….. it could happen. But the mom and the dad are so calm, so clueless, so free that they don’t mind. They trust in the world that the fates will be kind as they let their child wander about. They look as if they don’t have a care in the world and their big bubble looks oh so delicious. I watch with my blood-shot eyes, worrying……..over what? I’m pretty sure the cancer grim reaper does not live at Chelsea’s Kitchen. Hey! That’s too far! Hey! He’s talking to strangers. But the strangers just smile and laugh. He’s so cute they say. The mom and the dad don’t really reply, they look up and smile instead at the strangers almost in a conceited sort of way. They gaze into each others eyes as they’ve just had the best sex of their lives and now they are going to drink more wine and do it again. Their children certainly don’t cramp their style. They are so mellow and laid back. I’m pretty sure the VW bus strapped with surfboards on the hood and the California license plates, belonged to them. They continue to drink the wine. The little boy returns to the table. The mom orders dessert. The little boy goes back up in his high chair. So high. I watch as he eats the whipped cream with his mama. I watch her kiss it off of his lips, they way I used to kiss it off of yours. She asks for more wine. She is tiny, I think to myself. How can she drink so much wine? Don’t they have to drive home? Oh, how I hope they walked. But even that scares me. They have a brand new little baby, too. I’m confused. Wine. Toddler. Baby. Middle of the day. Smiles all around. Is this really real? Who lives this reality? It certainly isn’t mine. Is it everyone else’s, but mine? The little boy finishes his desert. He isn’t strapped into his high chair. He stands up in it and nobody cares. Or maybe it is that thing they seem to have going on where they trust in the world so much so they just know everything will be o.k. What’s that like? I can’t remember. He stands up and I start to count. 1,2,3,4,5…………. Hey! How is that allowed? He could fall! 45 seconds later and he almost does. But his mama swoops in to catch him right before the waitress does. The waitress gives a nervous giggle. The mom does not. She giggles as if something was truly funny. How is she so carefree, I wonder? Must be the flower in her hair. The long, flowy childlike hair. My lunch dates watch this interaction as well…. but not as closely as I do. I am borderline, obsessed. I would have never been so carefree with Ronan in a restaurant, I think to myself. I would have never let him wander without keeping my eye on him every single second. I would have never let him stand up in a high chair for 45 seconds only to catch him right before he fell. I would have never drank 2 bottles of wine, in the middle of the day. Or ever. What’s their secret? Because clearly they have the key to happiness. It was all over their smirky faces that were saying to me, you have a dead child and we do not! Sucks to be you! Or maybe they really do but I’ll never know. I know I cannot truly know the story of this family by my 60 minute observation. But in my mind, the story that I had made up in my head, was too much to take. After the almost high chair falling incident, I looked up at my 2 new friends like a deer in headlights. I’ve gotta go. This is giving me way too much anxiety. They both knew it and we quickly up and bolted. After paying, of course. Thanks, Rita;) I left your little restaurant, and that family behind yesterday. But not without feeling the stings from the open salt wound that is now my heart.

That’s my story tonight baby doll. It’s late. I’m tired but not really. I will try to sleep. I love you so much. I miss you. I hope you are safe. Sweet dreams. G’nite.

xoxo