I told you FTP wrote the soundtrack to my life

 

 

Call it what you want
Call it what you want
I said just call it what you want
Call it what you want

Yeah we’re locked up in ideas
We like to label everything
Well I’m just gonna do here what I gotta do here
‘Cause I gotta keep myself free
You’re ducking and moving just to hide your bruises from all your enemies
And I’m in the crossfire dodging bullets from your expectancies

We’ve got nothing to lose
You better run and hide
Yeah you’ve crossed the line
I’ve got a knife behind my back (just sayin’)
We’ve got nothing to prove
Your social guides give you swollen eyes
But what I’ve got can’t be bought so you can just

Call it what you want
Call it what you want
I said just call it what you want
Call it what you want

You’ve taken your words and you take your judgments
And stick them onto everything
If it don’t conform to what you were born into,
Then you run the other way
You say, “now what’s your style and who do you listen to?” who cares?
Well that rat race ladder-climbing fake-face smile’s got nothing on me

We’ve got nothing to lose
You better run and hide
Yeah you’ve crossed the line
I’ve got a knife behind my back (just sayin’)
We’ve got nothing to prove
Your social guides give you swollen eyes
But what I’ve got can’t be bought so you can just

Call it what you want
Call it what you want
I said just call it what you want
Call it what you want

Leo Died.

Ronan. A bedtime story for you. An unconventional story. The best kind of bedtime story. Because you never got the chance to grow up and hear this story. So, I will tell it to you now. Enjoy, little one.

My childhood, Ronan. So whimsical. So unstable. So honest. A childhood full of love and chaos. But not the good kind of chaos. The kind of chaos that ends up in divorce. Because parents fight too much. The kind of chaos that makes a little girl, develop thick skin. Which I am thankful for. Which I have always been thankful for.

A childhood, where rules did not really apply. But dreams did. Dreams that were my own to create and nobody else’s. Dreams that were shattered into a million pieces. But you learned how to put them back together, one by one. Alone.  A small town. A very small town. Full of  people who all looked the same. Until one day. Until one day, this man appeared as he had dropped from the heavens above. Tall. So tall. Your Daddy’s tall. 6’7 at least. To a little girl, like me, he looked like a giant. Curly, shoulder length black hair. Coal, dark, skin. As dark as night. The whitest smile. The biggest smile. The MOST sparkling, chocolate, eyes. Well…. almost;) My first encounter with the sparkly eyes. The laugh that could have stopped the world, dead in its tracks, and would have taken anyone who was full of ugliness, and turned their soul, beautiful. A man, that took a sad little girl, and gave her a reason to smile. And laugh. And love. One of my first teachers, about life, love, and loss. True loss. Painful loss.

I don’t know where this man came from. This man whose name was Roger, but we all called him Leo. Leo the Lion. He became a part of our family. My parent’s took him in, like he was just one of us. Uncle Leo. He would show up at our house often, out of nowhere and would stay for lengths of time. He would go on trips with us. Whenever he would come, I always knew our house would be filled with happiness. It was a given when he was around. My parent’s were magically happy. It was as if had cast a spell on them. He loved us. We loved him. We were family. It didn’t matter how different he looked from us. I never even noticed. I just thought he was beautiful. And so kind. A gentle soul. Even at 10 years old, I knew he was special. That his soul was different. I was a wise little girl. I soaked up the fact that my parents treasured him. That he created a world of happiness, just by being in his presence. They accepted him, for as different as he may have been, to our small town. There was gossip. Whispers. Looks. I was taught to ignore them all. There were not many people who looked or acted like Leo in our town. I respected my parents for not conforming to the “rules.” We simply lived the way they wanted to. The way, they believed in. An honest way where they didn’t hide much. No matter how ugly it may have been at times.

One night, Leo, appeared at our house. He had driven in from the town he lived in, which was not close by. A few hours from us I think. I was so excited to see him. I remember he was standing in our kitchen, and the way he seemed to glow to me. To illuminate a light. He pulled up his shirt, to show my parent’s some sort of wound that was on the side of his stomach, and it was not getting better. He was sick but was not sure with what. I remember feeling sad, but not scared. I was more concerned and confused as to what it could be. I wanted to know how I could fix it. Or how my parents could. Surely it was nothing.  It was quickly brushed aside, and Leo made light of it. He was all about happiness and did not want to worry my parents or intrude with something that he was sure, was nothing.

Time went by. Years passed. My parents got a divorce. I saw less of Leo. I went to live with my mom. Leo was my Dad’s best friend, and I didn’t see a lot of my dad, which meant I saw less and less of Leo. A phone call one day from my Dad. Although we didn’t see much of each other, hours of phone conversations existed between us. Honest phone calls. Always brutally honest phone calls between and father and a daughter. I must have been about 15 when I got this phone call from my Dad. “Leo is sick. Leo is not getting better. Leo has a disease called, AIDS.”

“AIDS,” I remember saying. “Like Magic Johnson?” I was devastated. I knew AIDS was a death sentence.

“Yes,” he replied. “But I am going to take care of him and try to save him by taking care of him, the naturopathic way. Nobody else knows what to do.”

And I’m also pretty sure, Leo, didn’t have insurance.

“O.k., Dad. I’m sorry. Please give Leo a hug.”

Years passed by. My dad took care of Leo, for many more years to come. My Dad took better care of Leo, than he did of me. It’s o.k. I understood. It was never an issue; Leo needed my dad, more than I did.

My dad fed him organic everything. Organic juices, fruits, vitamins, meditating, everything he could do, until they could do no more. My Dad watched Leo die.

I remember being so sad. It was my first encounter with death from somebody that was not 85 years old.  I was older when he died. I believe I had moved away to Arizona by this time. My heart ached for Leo, for my Dad, who had lost someone who was like a brother to him. I wouldn’t learn, for about a year after his death, that Leo was not your stereotypical male. This was never an issue in our family. To us, Leo was just a person, who loved everyone. And what is more beautiful than that?

It took me a long time to get over losing Leo. I still miss him but I miss him in the most beautiful way. When I think of him, I can still hear his laugh, see his smile, and I am reminded on why it is so important to be true to who you are, in this life. I will never forget his sparkling eyes, and I often hope, that if there is another world, where we are reunited with our loved ones, that he is off playing with you, Ro. I hope you are great friends. Leo was my first teacher, other than my parents. He showed me what it was like to live a life of freedom. What it meant to truly be a free spirit. How to embrace my inner Inca and to not be afraid of things that were “different,” to the norm of society back in 1988, when I was just a little girl, growing up in the deep, dark, forest, of a very small town.

He showed me light in the darkest of days. I need his light now. I am searching for it, constantly. It’s as I have been transformed back into the life of a 10-year-old little girl, trapped in a life of sadness. Lost in the deep, dark forest of 1064 Harmony Drive. Without anybody’s hand to hold because the only person’s hand  that I want to hold in all of this, is yours. And you are gone. And I am here. And life is not fair.

The End. For now. But not forever.

I love you my never spicy, extra naughty, monkey boy. I hope you are playing with Leo. I hope he is keeping you safe, happy, and you two are waiting together, for me. I promise to make you both, proud. I love you and miss you, so much.

xoxo

I forgot to pay the Cox Bill and I burnt the Fucking pre-made Cookies

Ronan. 3 days since I’ve written? How is that possible? I couldn’t possibly tell you what I’ve done. I only have words that fill my head. Conversations I remember. Thoughts that flow in and out of my mind. Visions. Of you. All bad. All sad. Nothing good. Your smile does not fill my heart. Only grief. Only pain. Only the ever flowing sadness of losing you, that consumes me. Everything is jumbled.

Cupcakes for a friend. A birthday. But not yours. Balloons. Not for you? But always for you. A play date for your brothers. With a 4-year old, but it wasn’t you? A storm. The first storm, without you to cuddle up to. A run instead? To avoid the pain. A run, after the storm at 8:30 p.m. in the dark, alone, from our house, very fast, all the way to PCH and back?? How did I end up there? 10 miles there and back from our house. I think. I couldn’t stop. I tried to find you but you weren’t there. Happy laughs from your brothers. Smiles so true. But how is that possible, without you? Bittersweet. Rage. Disbelief. Has everyone forgotten?

An email from school. A Fall Party. A Harvest Festival. Volunteers needed. Of course I sign up. Wait. A Fall Party? Don’t they mean, Halloween? No. They do not. It’s specific. Words printed right there in black and white. “Please keep in mind, the district does not want the focus of our party, to be Halloween.” What? Really? Who the fuck are the assholes who got, “Halloween,” kicked out of school?Because they must have worked really fucking hard, to make this happen. WOW. I wish schools would take Childhood Cancer, a little more seriously, than Halloween. I wish schools would be a little more offended, by their future kids, getting sick and or dying, from Cancer, than fucking Halloween. I wish the schools would take the time, to EDUCATE, kids on things like Childhood Cancer, instead of protecting them from Halloween. I bet our future generation, would grow up more compassionate, kind, loving, forgiving, helpful, smart, and all around, better people if they knew a little more, about Childhood Cancer. Instead of being sheltered from the world, by not being able to celebrate fucking Halloween at school. Really? We are really more offended by Halloween, than of Ronan dying? Than of all the sick little boys and girls, surviving, hurting, being scared, sad, ignored, tossed away, treated like LAB RATS and DYING? DID YOU HEAR WHAT I SAID?? DYING?? Who is making these rules? Who is wasting their time and energy of things that have such little importance or significance? Fucking idiots, that’s who.

Conversations that really happened. I could not make this shit up: Once again. Names have been altered, to protect the innocent. Except for mine of course. Slander my name. Throw me under the bus. I’ll survive. Worse things, could happen. Right? Yes. As we all know, much worse.

Number 1)

Silly Bug- “Mom, when Dad comes to our school to talk about his job, he’s going to say he’s a lawyer. If you come, you can say that your job is to take care of 2 boys all day long.”

Me- “Wait. What? 2 boys. No silly, bug. Not two boys. Three boys. You, Quinn and Ronan. Always Ronan.”

Number 2)

Silly Bug number 2-“But why, Mom. Why do you have to go see Dr. J today? Why do you have to leave us to go and talk to her.”

Me-“Because my son just died that’s why! My son, and your brother and I need someone to talk to! How do you not understand that?!”

Ummmm…. because they are 8, dumbass. Because you are so good at playing pretend, that mommy is going to be alright.

(insert guilty worst mom ever pressure internal monologue here) “Wait. Did I just snap at my kids? Did I really, just respond to them, with that answer, in that tone of voice? Was that even me? The calm, cool, I don’t yell rather I explain in depth, we talk it out, but now I’ve turned into the spawn of the Devil, Mom?? Yup. You did. And you’re not even going to apologize. Your going to roll with it. There is no going back and sugar-coating to the sweetest ever 8-year-old boys. You did it. You don’t ever do it. OWN IT. Life is tough. And sometimes, 8 year olds, need to be reminded of that because they are so resilient. It is amazing how resilient. I am thankful, for that resilience. The resilience that is so bittersweet. They won’t forget you. I know that. But sometimes I forget. And sometimes, it is hard to watch them, going on as if you were never here. As if you are still here, and never gone. It leaves me confused. Perplexed. Wandering about, in a state of mourning and grief, that only seems to be getting worse. Day by day. Minute by minute. The emotional anesthetics is slowly wearing off. I thought it had already worn off? Nope. You were tricked. You were fooled. It’s only getting more and more painful.

Push away. Isolation but not really. Out in the world. So busy. So many tasks. A real smile exists every so often. By chance most times. When they happen, they are authentic and they make my heart feel light and breezy. The lady who tells me she used to only get French manicures, on her fingernails, but is loving her bright, crazy colors, like the Bubble Gum Hot pink she has plastered all over her fingers and toenails. I think it must be, because of you. The little girl. The brave little girl who goes in front of her ENTIRE school, to give a speech and says she thought of YOU the entire time. That was you. I know it was you. The applications that I read for the model search. About the little girl that cut off her hair, and gave it to her cousin, who has Cancer. The little girl, who had her Daddy drive all the way from Tuscon, to fill her’s out. The people who stop me, to tell me that they will fight for you, for the rest of you their lives and they didn’t even know you. The Busy Little Bees of mine, who come swarming in, no questions asked, when I need help. All whispers from you. “Mama. I’m still here. Mama. You have to be strong. Mama. I’ll never leave you. Mama. My spirit still exists. Mama. I love you.” I hear your little whispers, ever so faintly.

A session with Dr. J.

A session that I think I cried for almost the entire two hours. A session where she asked me to read my letter out loud to Dr. Kushner. She asked me. She pulled me. She didn’t push me. A letter that I did not think I could write. I almost couldn’t. But I did. My uncensored letter. The raw, uncut version which was titled, “Dear Dr. You Killed my Son, Kushner.” A letter that needed to be written. Words that needed to be said. Valid or not, they needed to be said. For you. And for me. Because all it would have taken was a simple, “I’m so sorry. I failed you. Your son, is dying. There is nothing I can do. I tried my hardest.” Instead I got no eye contact, and thrown out of that hospital, like we were yesterdays garbage. Never to be thought of again. Not acceptable in my book. So, I channeled my inner rage, pain, guilt, and sadness in that letter. I could have written 20 pages, but had to stop when I could physically take no more. The words are there, in black and white. They will be sent. Someday. In an edited version. With your obituary. Then an unedited version, will follow. Someday. For you. For I am your voice as shaky as it may be. Someday I will be able to read that letter out loud, to Dr. J while looking her in the eyes. I will read that letter out loud to her in strong and powerful voice. Not in the way I read it out loud to her a few nights ago. Crying. Tears spilling all over the paper. Stopping. Starting. So much pain. Too much pain. Is that even possible??

Number 3)

Me- “Are you o.k.? I’m so sorry. What do you need? What can I do.”

S- “I’m o.k. There is nothing you can do. You know what. I’m wrong. There is something you can do. You can keep being amazing. You can keep being the remarkable young woman that you are. Please don’t ever stop that. You are amazing. Promise?”

Me- Tears spilling. Face black. Forgot to wear my fucking waterproof mascara. “Yeah. O.k. I promise.”

Heart heavy. Filled with Hope. The nudge I needed when I need it most. Always. Always. One of the few reasons that I am still here. A smile exists. Truly exists. You know. I know you know, Ro. You’ve always known.

Number 4)

Little Bug number 1- “MOM!!! Can you cook those pre made cookies for us today, for when we get home from school? Please! They have spiders on them!!”

Me: “Of course I can, Buddy! Because I’m SUPERMOM!”

2:30 p.m. rolls around. Fuck. Pick kids up in T-30 minutes. Throw cookies in oven for 10 minutes. Forget to set timer. Go to bedroom. Sink in bed for 25 minutes. Don’t sleep. Sit. Quiet. Still. Cry. What’s that smell coming from the kitchen? It’s nothing. 2:55 rolls around. Time to get boys! Jump out of bed. Ummmm… I smell smoke. Where is that coming from? OH MY GOD YOU DUMBASS! You burnt the fucking cookies! The fucking pre made cookies that are impossible to mess up and destroy. Well mama, you destroyed those to a crisp today. Black. I scrubbed the cookie sheet. Threw the cookies outside in the garbage as to destroy the evidence. It didn’t work. 5 hours later and our house still smells like burnt cookies. Good thing 8 year olds are so forgiving.

Number 4)

W- goes to turn on the T.V. ::::::: Your cable service, has been disconnected. Please call 1800 blahblahblah to have it reinstalled.”
W- looks at me like I am the devil. ” Did you seriously not pay the cable bill?” I mean really? Babe. You know before you do all your other “stuff,” that the bills need to be paid, right??”

Inca- (my alter ego, sassy pants name) FIts of giggles. Laughter. “Wait. Your going to get that upset, over the Cable Bill? Do you think if I called up COX and told them that our son just died of Cancer, that they would give me a Hall Pass?? Because I think that should qualify. Can you tell them, that the woman who is in charge of paying the bills is now a BEREAVED mother, so everyone at COX can be put on HIGH ALERT and she can be cut a little slack?? Just a little??”

W- Did not think that was funny. Played the responsible, mature role as always.

I had paid the bill, that day. I knew it was late. I was just hoping I had paid it on time, for it not to get shut off. I didn’t. Tragedy. I could care less if I never watch T.V. again as it irritants me like no other. Useless stagnate noise to fill the voids within ourselves. Pleasure? From T.V. Really? Or avoidance from the reality of all the beauty that surrounds us, but we choose to ignore. Or avoidance from our pain? Relaxing? Maybe. Not to a mom, whom has lost her son. T.V. is pure static. Pure torture. Unnecessary noise. Anxiety. Time that we always spent together, Ro. T.V. time. “Mickey Mouse Club House.” “Max and Ruby.” “Clone Wars.” “Glee.” Our favorites. Now the shows still play. I want to throw up every time Mickey Mouse Club House comes on the screen. You should be watching it on my lap, eating you eggies. Why are you not? Where are you? Can anyone, explain any of this to me? Do you still have your children? Oh, they are outside, playing. Oh, they are at soccer practice. Oh, they are picking you flowers.” Well, darn it then. You cannot explain it to me. You cannot tell me everything happens for a reason. You cannot tell me how I should or should not be grieving. You cannot fix this. No one can. Unless you can bring him back. Unless you can rewind time to before he died. If you can do that, than we can talk. I’d live in that world, the not sick, the sick, the cancer sick, the cancer not getting better; but not the he’s dying from cancer, world. I’d live in every one of those worlds, for the rest of my life, except that one. I don’t ever want to have to watch my son, die over and over again. Except I do. Because it replays in my head as if I am at a theatre, watching a movie. The same movie, over and over again.

Dear Faithful Followers of this Blog,

Are you still out there? Have you gone away? I hope I didn’t worry you too much. I hope I didn’t scare you with this jippity jumpity blog post. I know I was a little all over the place. I told Woody I had not written in 3 days. He asked how that made me feel. I told him anxious. Very anxious. I’ve had too many things going on in my head to keep them cooped up for that long. When I release them, it’s like a flood of words, feelings, thoughts, all discombobulated. All wild and free which is just where I need to be because , All good things are wild and free, right? I so believe this to the core of my soul. Of the core to Ronan’s soul. My other favorite quote, “Life’s no way to treat an animal.” Vonnegut knows it better than anyone. I so appreciate that. I so appreciate all you. Forgive my lack of communication as far as messages, emails, Facebook’s…… I’ve taken on a lot. Emotionally, Physically, Mentally…. I feel like I’m drowning again. Dr. J is going to print out little flyers for me that simply say, “FUCK OFF! MY KID JUST DIED! SO NO, I WON”T DO THAT!” Brilliant woman she is.

If you have not heard from me this week, it’s not because I’m ignoring you. It’s because I honestly have so many emails, that I am scared to open them all up. I am going designate a day, to do this and go through them all, properly. Thank you for sending them. I can’t wait to read them. I’m sure there is much amazingness to come from them. So THANKYOUTHANKYOUTHANKYOU!!!!

Less is more. Busy is o.k. but not busy the way I have been busy. Ronan. You should see our laundry room. The one that is always perfectly spotless as Im always caught up on the laundry. I have piles of clean clothes, everywhere back there. Spilling out of the baskets, the sink, on top of the dryer. Obviously you know I’ve been way too busy if this is happening. I’m a laundry freak and obsess over it. Not this week. Apparently this week the our little laundry fairy (me) decided not to show up. We will have to dock her pay!

YOWZWER RO! It’s a novel tonight! Time to say G’night my little Boo. I love you. Your Daddy loves you. Your brothers love you. We all miss you. We are all hurting over you. We will hurt over you for the rest of our lives. But lives that you are going to shape for us to live, so we can live with the most potential possible. Because to live any other way would be pointless and shameful.

I love you, RO. I love you to the moon and back. Just me and you, Baby. Twinkle Twinkle Little Star. I hope you are safe. You are so very loved.

xoxo