We were the closest family possible. Our world was turned upside down on 05/03/09 when my best friend, the person I love most next only to our children, my sister Trina was diagnosed with stage IV breast cancer. Her body gave out on her on 01/09/10 but she will ALWAYS be a part of our daily life and will continue to be in my posts. I started my blog to chronicle our daughter's international adoption from Guatemala and have continued to use it as a journal.

What you will find is my family trying to adapt to our new lives that were handed to us.



Monday, May 28, 2012

Names

I love names. I've always loved names. I used to obsess over a baby name book when I was growing up looking at various names and seeing what each one meant. Beya and I also find it wildly ironic that I didn't get to name either of my two kids.

A few weeks before we got Valentina's referral I thought I should at least write down a few girl names that I liked. We had about an 80% chance of having a boy, the agency told us to plan on a boy, everyone had said that if you didn't request a girl you would have a boy. We were going to have a boy. His name was going to be Jameson but I thought I better have a backup plan. Little did I know that not only did we have a girl but that she was already named.

Yesterday I was going through some paperwork and found that piece of paper that I had written down my preferred list of girl names. I told Norm that I had found "my list". Valentina heard me and came running in from the family room. She asked me what it was and I explained it to her. She wanted to hear the names. As I read them to her she had an opinion for each and every name. I was writing down what she said because it was making me laugh. What follows below is me saying the name and her response to it.

Ana - I like it.

Ava - No.

Aviana - That's just CRAZY! That's Aviana's name!

Carolina - Who's Carolina?
(sidenote: this is Valentina's birthmom's first name and was going to be Valentina's first name. We have things engraved with Carolina Valentina and her adoption announcement says Carolina Valentina. We were going to call her Carolina. Oh how things change!)

Chloe - NO!

Christina - No-un!

Claire - yeah....

Ella - Yeah.

Emily - No.

Emma - No.

Erin - No! That's sorta like Karen!

Esme - YEAH! That's a princess! Princess Esme!

Faith - No. Then I'll be Faith. Like fake. And like disgusting.

Gemma - Yeah! I like Gemma!

Harley - No. I'll be a cherry.

Katherine - Then I'll be Kat. Then it would be Cat, like a kitty cat! No!

KiKi - No.

Mia - No.

Morena - Yeah, I like that.

Neiva - That's cold!
(sidenote: that means snow in Spanish and she obviously knows that.)

Nina - That would be like Nina and Star on the Good Night Show!

Olivia - That's a PIG!

Payton - That's a BOY name. Then I'll be PAINT! No!

Ramona - Row. Then I'll be a road, like on a street!

Regan - I'd be a wagon!

Rian - That's a BOY name! Why would you give me a BOY name? Besides, that's Daddy's brothers name!

Sarah - That's CRAZY! That's like SARAH!
(sidenote: she has a cousin named Sarah)

Sofia - No.

Zoe - No.

Courtney - Then I'll be CORN!



The whole time Valentina was giving me her opinion she would wave her arms and throw the biggest theatrics.

After we went through all the names Valentina said "Wow, that was WEIRD! But I'm Valentina!"

Yes she is!

Tuesday, May 22, 2012

Real Hero's

Last night was an evening I had been planning and looking forward to for a few weeks.

One of my favorite authors, Augusten Burroughs, did a book signing. The last signing of his I went to was on 06/06/03, almost 9 years to the date of this one. At that point his book "Running With Scissors" was just exploding and was on the best sellers list. He was promoting his latest book, "Dry". I had him sign those two books plus his first one, a novel "Sellevision". I even had my picture taken with him. There were maybe 50 people there at that first signing. I even had a nice chat with him. I had emailed him prior to the signing and he emailed me back the next day and referenced our conversation. "Running With Scissors" literally changed my life for the better. I put him on a pedestal and have bought all of us subsequent books, "Magical Thinking", "A Wolf At The Table", "Possible Side Effects" and "You Better Not Cry". His latest, "This Is How" is a self help book. I also have the memoir his brother, John Elder Robison, wrote "Look Me In The Eye".

Beya and I got to the signing an hour early and there were only a handful of chairs available. We got some pretty good seats and within 10 minutes of showing up all the chairs were taken up and people were sitting on the floor. By the time he came there were easily 300+ people and some weren't even allowed on the third floor because the room was so full.

I grabbed his latest book, which I hadn't bought yet, and flipped through it during the hour mom and I waited. There was a chapter titled "How To Be Sick". I read it and in it he talks of going through the death of his former boyfriend, dealing with all the things that are NOT normal that become your new normal. Some of the things he wrote I didn't agree with and other things were spot on. I struggled to keep my tears at bay and had an anxiety attack that I have no idea how I kept from becoming a full blown panic attack.

Augusten arrived.

My hero.

The man who changed my life.

The man who I admired so much.

Augusten was there and I was in the same room, only a few feet away from him.

He said he would read part of a chapter and then do a Q & A session before sitting down to do the signing.

"The chapter I'm going to be reading from is called 'How To Be Sick'."

Are.You.Fucking.Kidding.Me??????

Of all the damn chapters he could pick to read from, he picks the ONE that I didn't want to hear out loud?

Really????

Really.

Augusten started to read. He read about getting the handicapped placard and license plate and that when this happens you should treat yourself to cupcakes.

The memory of going to the DMV with sissy to get her placard immediately came to my mind. How much it sucked that she needed this. How horrifying it was that her doctor had written it good for 5 years. How scary it was to think that she would need this for five years. How utterly terrifying it was to think of what was going to happen after the five years were up.

Tears were streaming down my and mom's faces, I didn't even bother to try to hide it because I knew it wasn't going to stop.

And the audience laughed.

They laughed.


I'm going to paraphrase here but he went on to read that you need to treat yourself when you get bad news. If the doctor calls to review your test results over the phone, you get fries. If the doctor insists on reviewing them with you in person, you get cheese fries.

Again they laughed.


I, of course, remembered Tuesday, May 5th, 2009. Sissy was at my house when she got the call from her surgeon after he did the biopsy saying he needed to talk to her in person immediately.....and to bring her family.

The doctor was confirming our worst fears, that her cancer was back and had spread to her liver. We would find out in the coming days that it had spread to her lungs as well as other places. A month later we would discover her bones her infected.

And people were laughing.


Mom and I were crying.

I understand the importance of laughter when things are so horrible you don't think you can live but.......

It was at that point that I realized who my real hero's are.

My real hero's are the people who have had their lives irreparably and violently ravaged by loss.

My real hero's are:

Jen and Aviana

Holly who lost her dad

Krystal and her two sweet boys

Michelle C. who lost her daughter Kennedy

Michelle F. who lost her brother Giovanni

Kathy P. who also lost her sister from breast cancer and now her mom has cancer

LucyAnn who lost her daughter Samantha

Brittney who lost her dad 

Mary who lost her brother

Beya who lost her daughter

and most of all, 

Asa who lost his mum mum



If I forgot to list your name, please know that my memory is horrible and I'm sorry. 

You are all my real hero's.


Sunday, May 20, 2012

Sometimes.........

Sometimes I want to scream,
Sometimes I want to hide.
Sometimes I want to wish
All of this goodbye.

Sometimes I try to disconnect,
Sometimes I try to shut down.
Sometimes I feel like my grief
Is so strong it makes no sound.

Sometimes I shut my eyes
Sometimes I try not to think
Sometimes I feel like my wrath
Is so strong I can rip out the kitchen sink.

Sometimes I grab things
Sometimes I even throw
Sometimes I feel like anger
Has a grasp on me that won't let go.

Sometimes my mind starts to wander
Sometimes I think this isn't real
Sometimes I think I'm incapable
Of being able to really feel.

Sometimes people say I look happy,
Sometimes they say I sound good
Sometimes I want to punch them in the face
Even though it would do no good.

Sometimes I don't allow it,
Sometimes I stop from crying
Sometimes I'm really good
At keeping things away and lying.

Sometimes I tell myself
This can't possibly be life.
Because I never thought I could breathe
Without sissy by my side.


Thursday, May 17, 2012

Inside

I like to watch "Inside the Actor's Studio" once in a while which is hosted by James Lipton. This week they had the cast of "Mad Men". There are always the same 10 questions asked towards the end of the interview and I thought I'd answer them for myself.


1. What is your favorite word?

dreamy

2. What is your least favorite word?

cancer

3. What turns you on?

chemistry/passion

4. What turns you off?

arrogance

5. What sound or noise do you love?

The kids having a quiet conversation when they don't know I'm listening

6. What sound or noise do you hate?

anything repetitive

7. What is your favorite curse word?

all of them. Fuck, dammit and shit are my go to words though. 

8. What profession, other than your own, would you like to attempt?

race car driver

9. What profession would you not like to do?

field worker

10. If heaven exists, what would you like to hear God say when you arrive at the pearly gates?

Your sister has been waiting for you. Go see her. 




So what about you? Answer these 10 questions yourself!!!

Sunday, May 13, 2012

Mothers Day 2012

No mother should have to go to the cemetery on Mothers Day to see their child.

No grandmother should have to ask her grandson if he wants to go to the cemetery to lay down flowers where his mom's body is.

No child should have to feel different on Mothers Day because their mom died 28 months ago.

No sister should have to avert her eyes in the Mothers Day section of cards titled "To My Sister on Mothers Day" and have to use every last bit of strength, physical and emotional, to keep from having an all out fit, i.e. screaming, crying, cursing, throwing things and have it end with me wiping out ALL the Mothers Days from their perfect little setting in the card aisle, taunting me.

But we did.

Beya and papa went to the cemetery to see the cold, hard slab of stone with Trina's smiling face on top on it that marks where their oldest daughters body lies, deep within the ground, hoping upon hope that her spirit is someone else.

Asa asked mom to write a note saying simply "I love you mom. I miss you. Happy Mothers Day."

I managed to leave the card aisle intact. It was in my mind that my emotional landmine exploded causing every last card to burn and turn to ash.

And after doing all of these things, we did what sissy would have done.

We drank.

We drank Bud Lite.

Correction.

Beya and I drank Bud Lite, sissy's favorite beer. Sissy could go to any brew pub, order any microbrew, know the ins and outs of it, ask a stranger a few simple questions of what he liked and then she'd be able to tell him with 100% success rate what beer he'd like the best. But what beer did she drink at home?

Bud Lite.

Her runner up was Pabst Blue Ribbon.

Two of the cheapest, trashiest beers and those were her favorite.

So today Beya and I drank Bud Lite and PBR and would send our "cheers" towards the sky.

That is how we spent our third Mothers Day without sissy.

Never any easier, always a bit harder, pain neverceasing, love constantly there.

And now tonight, the children are in bed and all is quiet except for the frog ribbitting outside (not much longer, I'm thinking frog legs might be something the kids are old enough to try).

I hate moments like this. Moments where I am left alone with my thoughts, memories and feelings. Nothing to occupy to mind but what I don't want in there, all the fun, all the parties, all the laughter we had in the past and what we should be having now.

I try to avoid these moments because they are not just emotionally painful, they make my very body ache and I feel like at any second I will throw the computer all the way across the living room, drop to a fetal position and curl up as tight as I can get, curl up tight enough so that nothing can get past me. Use my body as a shield for CANCER and DEATH and GRIEF. Curl in to a position so tight that it cuts off my blood circulation. Cry so hard I don't make a sound. But no matter how tightly I have wound myself up, literally and figuratively, my worst enemy is always with me. My mind. My mind that holds all the memories. And my heart. My heart that I envision being shredded by a rabid tiger yet still doing it's job. I can still love my family but no matter what, my heart will never be whole and it will never be the same.

Ever.

So that is why I have started to embrace my bipolar, anxiety, disassociative disorder and depression. Combined they cause my mind to become severely chaotic, leaving me trying to pick up bits and pieces of my life as I can, yet my mind is always going on to the next thing.

It sure as shit beats the quiet moments where all I have is an empty mind.

Tuesday, May 08, 2012

Perfection

I just have to say that last nights season finale of "Castle" was absolute perfection. I had seen the previews of Kate walking into a room, grabbing a man and appearing to kiss him. It didn't take a diehard fan to see the background was Rick's apartment but still, you never know if it will be a dream or if the scene will cutaway or a myriad of other ways that it could be resolved. I only took one Ambien last night so I could be "present" and watch the show. If you remember, this had been one of sissy's favorite shows and I started watching it after she died. I have imaginary conversations with her in my head during and after each episode so this show holds a very special place in my heart. There were quite a few shows that we watched together but only a handful of ones that she watched and I didn't. "Leverage" was another one and I've since become an avid fan of that also.

Anyway, I have a routine of watching "Castle". I must be alone or if Norm is with me he must be absolutely silent. There must be no talking, even during the commercials, it interferes with my "conversations" with sissy. Last night I didn't even have to tell Norm to be quiet, I think he was as in to it as I was. We were both leaning towards the tv in anticipation. I couldn't wait to tell Beya this morning what had happened. I talk to her about it in the same way that sissy talked to me about it in that mom doesn't watch the show but does listen to me. I even got a bit emotional while watching it, which as you know I try to hold back my emotions as much as possible. I found a great article on the season finale.

I thought last years season finale was amazing but I was hoping this one would be less dramatic and have a few more ends tied up.

It was perfection.

Dentist And Dizziness

So I was supposed to go to the dentist today.

I didn't go.

BUT, I had a great reason why I didn't go. It turns out the Union has a contract with another dental place and we pretty much have a zero co-pay. Needless to say I cancelled my other appointment (ok, more like didn't show up and then dodged the phone when they called me 15 minutes after the time I was supposed to be there) and set up a new one with this other dentist.

I go Thursday.

This one I AM going to keep.

Dizziness.

My dizziness has become worse. It's to the point where I have to be careful of looking up to reach a bowl from a cupboard, walking around corners, turning around, backing up the car, etc.... because anything like that will send me reeling and make me feel like I'm going to be knocked off my feet. I mentioned it to my therapist yesterday (Monday is therapy day) and he finally explained it to me. I've been to several different doctors, explained how I feel and they all just tell me it's normal for the type of injury I have or it's from my medication or it's just how I am. Who would have thought my mental health therapist would finally give me an explanation as to why I feel so dizzy?!

He said it is kind of common for people who have neck injuries/chronic neck and back pain to unconsciously hold their head in a specific spot that puts the least amount of pressure and causes the least amount of pain. That is quite often not a level position and also we tend to move our neck less than other people so when we do move our heads, like looking up or turning around, it causes a vestibular reaction, i.e. dizziness.

That makes so much sense!

Trina developed debilitating vertigo after the car accident. It incapacitated her. She vomited and literally had to crawl on the floor, when she WAS able to leave the bed. Mom found the wild, mad scientist, genius Dr. John Epley and he was able to treat sissy, curing her from her vertigo. He did two or three surgeries on her. He's now retired but he will always be held in our highest regard for fixing sissy.

Anyway, it turns out my therapist is on the Board of Directors of vestibular disease (or some other important title, I can't remember exactly, it was a day ago!) because his mom had Meniere's Disease and was one of the first people to receive experimental surgery at Johns Hopkins University. I love talking to Dr. B because he is so knowledgeable in so many areas that I never would have guessed he would be.  I guess that's one of the perks of having a therapist who has written several books and is famous.

I finally have an explanation as to why I'm dizzy.

Soon I'll have some relief from my tooth too.

When can I have relief from my emotional pain?

Monday, May 07, 2012

It Happened

I've had a recurring nightmare for years. Okay, two recurring nightmares. The first one is where an immediately family member is diagnosed with terminal cancer and has only weeks/months to live but ever since that one came true I no longer have it.

This second one I shared with sissy. We never knew we had the same nightmare until one day we were somehow talking about something that brought up the subject. We both thought it was such an off the wall, unusual dream that we never thought TWO people could have the same dream. Well, if two people were  going to have the same dream it would be us.

A little background first. Papa doesn't eat an apple peel. He also doesn't peel his apples. How does he eat an apple the way a normal person eats an apple (bite into it) and yet not eat the peel? He spits it out. But he doesn't just spit it out, he just stands there, chewing the apple and then just letting the peel fall out of his mouth. It almost looks like he's vomiting and it's quite funny if you're watching him. This is the way he's always eaten an apple.

So what was sissy and my nightmare?

Our teeth fall out like the apple peel comes pouring out of papa's mouth. Our dreams were the exact same in that we'd just be talking to someone (usually each other) and our teeth would start falling out. We wouldn't be able to talk as teeth would come out instead of words. We'd raise our hand to our mouth and our hands would get full of teeth shards. All of our teeth would fall out and we'd just be standing there, in shock, wondering how the hell we were going to fix this.

Friday afternoon I was watching "Grey's Anatomy" with Beya and eating Gummi Bears (only the red, orange and yellow ones) and I felt a crunch. Gummi Bears aren't crunchy. I opened my mouth and out fell the Gummi Bears and I instantly flashed back to my dream and sure as shit, out with the Gummi Bears came three shards of a tooth. I had a handful of Gummi Bear shrapnel and pieces of a tooth. I was shocked. I looked at mom and told her it was my nightmare come to life. I also had to stop my arm from reaching up to grab the phone to tell sissy that our dream had happened to me.

I go to the dentist tomorrow.

Friday, May 04, 2012

God

Beya has been asking me frequently if I believe in God. I talked to her about it the other day and she realized what she had been doing, apologized and said she would back off. She's not preaching to me by ANY stretch of the imagination but she is curious as to what I believe.

Me too.

I look at Asa and I believe in God.

I look at Valentina and I believe in God.

I look at who isn't here......

...... and I don't know.

Wednesday, May 02, 2012

May 2008 - May 2012

May is hard.

Sunday, 05/03/09
ER cancer diagnosis. I'll never forget mom coming into my bedroom, shutting the door and simply saying "it's the worst possible news." I knew immediately before I could even choke out the word. "Cancer?"

Monday, 05/04/09
A day full of doctor appointments. There was a chance that the ER doctor was wrong! There could be a reasonable explanation for her liver enzyme numbers! It was possible that this was just a horrible mistake! We had HOPE! We had FAITH! We BELIEVED!!!

Tuesday, 05/05/09
The cancer diagnosis was confirmed. Cancer had indeed thrown our lives into a tornado that will never end.   It was unreal to me that this horrible truth could occur on Cinco de Mayo. This was our holiday! This was our day of celebration! How could this happen on a day that we liked to party?

Wednesday, 05/09/12
28 months since sissy died.

Sunday, 05/10/09
This would be the last Mother's Day that Asa had his mum mum. This would be the last Mother's Day that Beya and Papa could celebrate their oldest daughter being a mom.

Tuesday, 05/15/12
28 months since the service.

Sunday, 05/25/08
My Grandma, Beya's mom, died.

Friday, 05/30/2008
Sissy and I had planned and looked forward to going to the "Sex and the City" movie opening night. We had decided to release our inner Carrie Bradshaw and wear fabulous outfits that would make Patricia Field proud but we canned it because Grandma had just died.

Friday, 06/01/2012
My grandma would always recite the "What Is So Rare As A Day In June" poem.

Monday, 06/02/08
Grandma's funeral.

Tuesday, 06/03/08
We had tickets to see Kanye West but decided not to go due to grandma's passing.


So yes, May is hard.


June is hard because it's Father's Day and papa is missing a daughter.

July. Our annual Independence Day party.

August. Sissy's birthday month.

September. School starts and Asa's birthday.

October. My birthday without my sister and Halloween.

November. Josh's birthday. Mom's birthday. Thanksgiving. They day we put up and decorate our fake tree in the family room. The day we get our live tree.

December. Ouch.

January. Horrifying.

February. The month we celebrate Valentina's birthday.

March. Norm's birthday and sometimes Easter.

April. Sometimes Easter.

And then back to May again.

It's a vicious, cruel and never ending cycle.

Every day is hard.