The Day My World Ended

I know technically my world is still rotating.  I am still breathing.  But, my axis, my center is gone.  Four years ago today - at 4:58pm to be exact - Olivia left this world cradled in my arms.

If you read my earlier post about her entry into this world, you might see something familiar.  Olivia was born at 4:58 am and died at 4:58pm.  She was born on February 5th and died on February 10th.  She died in 2008 at the age of 8.  My diva was all about symmetry, apparently.  She was amazing in every way.

I know I grew her.  I know I birthed her.  I know she looked like me.  I know she was mine.  BUT, I have heard for years, from many people that she was special.  There was just something about her.  She grabbed people.  There were people from around the world praying for her (thanks to the blog and list-serve in which I was involved at that time).  Each day, I could log onto my email and there would be digests or individual emails from Israel or China or Australia.  Some were worded in ways that were unusual to me.  That didn't matter.  It was the true love and caring that came through.  When she died, there were hundreds that poured into the church over two days to pay respects, some driving for hours to get there.  I was shocked and amazed and so proud of the way my tiny, wise, loving daughter had touched so many lives.

I know it may surprise you to hear that I did things differently.  Many are too personal for public consumption.  The easy parts to share are that I tried to keep some part of her life normal.  Olivia didn't die in a hospital.  She was home.  We enlisted hospice services.  There had been too many surgeries.  There were too many brushes with death.  There was nothing else to do to stop the demon that was the seizure monster.  So, we stayed home where she was happiest.  She was with her cats that she loved and who loved her.  Albert and Snooks stayed on her person or by her side as if they were fierce protectors.

She stayed on her Mommy as much as possible until my friends, or the Posse as they became known, forced me to shower and eat.  Although, toward the last weeks, people even fed me so I didn't have to put her down.  I didn't want to miss a single minute.  I cherished every second.  My God, there could never be enough of them!

From January 2 until February 10th, it was a waiting game.  It was gut wrenching.  I felt like my heart was ripped out, shredded and put back in a million times.  The last time, four years ago today, only part of it was put back in.  I haven't been whole since.  I am thankful for the love and devotion of those Posse members who have held on to me and kept me from tipping over the edge.  I am thankful for new ones who have come into my life to strengthen the rope.  Kelly is doing his part to be patient and tolerant of my lashing out.  I can only imagine what it's like to experience it when you didn't experience the event.

I lie here covered in my quilt made from her clothes.  It's been washed many times, but they still covered her at some point.  It's my way of holding her today.  There is nothing I wouldn't give to have Olivia Nicole in my arms again.  The only solace is knowing she doesn't have those damnable seizures anymore.

Thanks to one of the original Posse members, there is an actual star named Princess Olivia.  I've never taken the coordinates to a planetarium and looked, so I just look at the night sky and assume the brightest thing I see is it.  When you look up tonight, wave and say "Happy Angelversary, Princess O".  It's happy because there is no more pain and there are no more tubes.  That is how I keep breathing and standing on solid ground.

Ratel is back

There comes a point when anger overrides hurt.  My heart has hurt all week.  I am a softie.  I let my feelings get hurt very easily.  I have expectations that people will treat me the way they want to be treated.  No, I do not do that all day, every day, but it is something I inherently believe.  There are those near and dear to me who have heard the concept and that is all.  I am sick to death of excuses.  I want to vomit every time mouths open because I know it is a load of shit about to be dumped.  I excused myself from a situation yesterday that may temporarily cause some inconvenience for these folks.  I'd much rather that happen than my baggage cause them emotional damage next week.  My Olivia emotional baggage can fill the car of an Amtrak train.  And hell yes I'm dealing with it today even though it's not her actual birthday or anniversary day!  What an idiotic thing to say! (different situation yesterday)

Sometimes, I feel like I am either completely losing my ability to communicate with people or some people simply cannot fathom how horrendous and difficult even the smallest task can be right now and over the next few days.  **NEWS FLASH**  I am struggling to get out of bed, shower and make it to work.  If it weren't for The Bloggess and Jon Stewart  (mocking all political news-especially Mitt Romney's idiotic blunders) to entertain me, I'm not sure I would make it through the next 7 days.

                 My spines are up.  I am Ratel.  I don't care.  I don't give a shit.  I am a badass. 

Caught in an Evil Vortex

**Not for sensitive ears or eyes**

You know how my last blog post was about happy endings?  Well, fuck that! 


Justin and I haven't been close for several years.  We reconnected earlier this year when his son was born.  I thought he'd gotten his life back on track.  He looked good.  He seemed good.

This experience with him has been hell.  I am now the person I coach at work.  I am the person I tell, "It's ok to cry, but try to hold yourself together in front of your baby/son/daughter."  I had done ok the past few weeks.  The first days were awful.  I collapsed onto him, basically, when I saw him the first time.  Otherwise, I have held it together and cried outside.  I have utilized the good drugs Mother Nature and science gave us by prescription to get me through the toughest moments.


SO...I stand for 14 hours or so a day (because the ICU staff are glad to have someone with him) and do every little thing I can for him.  It might be scratching an eyelid or a nose.  It might be adjusting his bed 20 times because nothing is comfortable in that halo and every place he can feel is uncomfortable.  I stand because he can't move his head and he wants to be able to see me.  That means either directly beside his head, leaning over or at the foot of the bed.  I am one of those people I say needs a break.

I guess when you wake up multiple times a day, and it's like a lightning strike every time that is more the life changing event than the actual event.  All of this has made Justin have several epiphanies.  The gut wrenching conversations we're having are Oscar award winning material.  Today, though, it was a 4-word sentence that did me in.  He's used humor.  He's been angry.  He's been weepy.  Today when he'd asked me to scratch his eye again, he just looked away from me and said "I hate being paralyzed."

His lungs looked better for a while today, then he had a very rough afternoon.  He scared me to the point of hiding in a corner and I don't hide in corners.  I feel so alone.  I need a Navigator!

I was actually told to leave the cafeteria tonight by a rude volunteer who pushed me out of line because they were apparently having a  special dinner tonight, but this was before the cafeteria was closed.  I'm so delirious with exhaustion and sadness, I didn't even call a bitch out!

I'm just sad.  I was so damned happy and I bragged about it.  I shouldn't have ever done that.  Two days later, we got calls that Justin was sicker and it was grim looking.  We get it worked out for me to rush down here and it's been pure misery to live and watch.  There is so little I can do for him and yet, today, he told me thank you.  He said he never expected that I would be the one by his side, rubbing his head, scratching his nose and keeping his nurses in line.  My response?  It doesn't matter what people do that we love.  The person we love is always inside.

So I'll do my very best to keep coming as often as I can to this hell hole of a town.  I'll stand in his room 12-15 hours a day.  I'll love his wonderful nurses (like the one who came to hug me today just because I looked like I needed it) and call out the ones who are shitty (like the one who thought it was ok to make Justin wait nearly 15 mins for something that took less than 3 when that's all he wanted in exchange for going back on the vent early).   I will fight the urge to scream until I get in my car going down the interstate.  I will fight the urge to cry my eyes out until I'm at least in the parking lot.   And now, I will try to sleep on this lovely futon that's at least free and just down the hall from him.