Saturday, December 31, 2011


So this is the end of a year with great highs and lows. Lows so deep I didn't want to keep going. Highs high enough to make me smile for a week. But I've lost all the joy I once had. Don't know when I'll get it back if ever.
So I sit here watching old tv shows as if time will go back to when they were made. Every nite I go to sleep reliving the last hour. I can't get it out of my head. Just like I couldn't get the crash out.
Get on with the business of living I keep telling my self. Sometimes I listen.
I got up this morning to work on my art. Sat down at 9am to log on to work to see if they needed me and got up at 5pm. My doc said I should go back to work to give some structure. And I am but I haven't got the heart for it I use to have. It took me a long time to get it back after Mary left and now I'm afraid it's gone for good. But I have bill to pay so.... Good thing I like my co workers..they are some of the best friends I have.

Sad but true.... Sbt

Thursday, December 29, 2011

My bad...

A girl Danny's age that we visited at Emory got a heart this week.  Started having the same troubles that Danny did but now her kidney's are working.  Her new heart is having a little trouble so she is still critical. I can't help but feel a little jealous.
It's been 5 days now and she's still having trouble. I'm so sorry she's still in icu. Everyone is giving god all the praises. What's going to happen if it all goes wrong. What will the praises be about then? Is that mean? If I could pray I would. But I truly hope she gets well.
I have to quit reading all the transplant links and remove them. I'll the buddies but not the rest. It hurts more than I had thought it would. I'm so confused.

Monday, December 26, 2011


I miss my kids,too. Long day yesterday. Things to do, places to go, people to see. But no joy in seeing the sunrise. Every day is a little too long for me. Thanks, Kerry, for trying to distract me with wonderful toys. It works for a little bit. Then the numbness comes back because I don't have Danny to run to and show my toys to. Or argue with about letting him have them, or talking about getting him the same thing. After all, it's only money and you can't take it with you.
Distractions are good for only so much anesthesia.

Friday, December 23, 2011

Shopping again

Yes, shopping again.  This time with Cindy and Amber.  Getting Cindy's hair cut and my hair place then to lunch with Amber and on to shopping.  Boy do I like to spend money.  Don't have any but that's not stopping me.  This is my escape, my release, the faux kleenex for my heart when it's bleeding.  

I have more pictures to create.  I can feel them.  Just need some peace and quiet.  Maybe I'll take another art class.  Never know.

Wednesday night I didn't go sleep.  Got in bed at 2am after finishing a hat and laid there until Kerry got up at 4am.  Then I just got up too.  Went back to making hats again and drinking coffee.  Just sitting in my chair with the quiet darkness outside and the little light on over my head reminds me I am still standing in the middle of the desert. Nothing has changed.  Still sand everywhere with some of the glassy spots still laying around.  I guess I could try to step on one of them but I'm not going to.  I'm quite comfortable standing here.  Those spots might give way and I'll fall.  I know they lead somewhere but I'm not in the mood to find out where.  One day. 

Tuesday, December 20, 2011

You can too

I am not strong
I am not weak
I just am
You can be too.

I don't know what it's like to live on the precipice of life.  To wonder each night if you will wake up the next morning.  I'm pretty sure that hope keeps you going and every day that you wake up is a good day no matter how you feel.  But that's just a guess.  That's what you always said.

I'm sorry the last few years were not as good as they could have been but I know the last few months were the best.  I have no regrets about our relationship.  We knew what love is and learned to accept each other as equals.  You pushed others to expand themselves.  Some could, some couldn't.  You took nothing for granted.  You faith is in the love of your family and friends.  You are the best part of me.

I am not sorry that I am hurting 
Not sorry that I am sad.

It' not easy to hurt like this
Not easy to feel bad.

I can't just shake it off 
like the rain upon your coat.
And I can't just walk away
from a life I've always known.

I feel your presence everywhere
your footsteps in the halls
your laughter in the echos
of the quiet on your walls.

When I reach to touch your face
I wipe away a tear
There's only empty space I see
And what's left is cold, hard fear

You've gone from womb to tomb my child
And the good die young they say
So many catchy phrases used
Spit out to save the day.

I'm not sorry that I don't smile anymore
Laughter hardens a broken heart
And I'm not sorry I held you 
as you left this life of ours

But I will survive,
You made sure,
I will survive.

Sunday, December 18, 2011


This time
Last time
Next time
More  time
What does time stand for?

Your time
My time
Their time
Our time
When time is up, what's next?

You frown
I mile
She laughs
He cries
Our faces give us away.

Hearts feel
Minds think
Understand that
Eyes blink
Reality changes that fast.

Peace and love
You cannot steal
Neither can they be a gift
They are packaged in the deal.

You think because I don't hold god's hand that I can't find what you call peace? Is your peace making your fate, your destiny, someone else's responsibility?  I have no one to blame or praise for my choices but myself.  If god gave me anything he gave me a brain.

Religions say the only way to peace is through their god. And there are so many religions so there must be many gods.  Which one is right or are they all right, or equally wrong?

There is no explanation for life - it just is.  But there is love. Think with your heart.

Wednesday, December 14, 2011


I wonder if I could live in a beach community.  It's not a question, it's a comment on life.  Something has to change.  Not sure what.

I woke up around 3:30 or 4 this morning.  Laid in bed for awhile.  Tossing, thinking, crying a little sometimes.  Finally got up at 5 (looked at my phone) and made coffee.  Laid on the floor beside Chuyi for awhile, snuggling my face in her fur, petting her nose, and just holding on to her.  She follows me almost everywhere. If not me then Kerry.  She's always under foot just like Danny says.

I'm sitting in my chair in Kerry's room, blankie covering my legs and lap, yarn and needle at hand, mixed media books and mags half read, TV show running, and my computer. All this varied input funneling into my life space, my brain, and still I can't focus on any one thing.   (OMG I'm sitting here critiquing the stupid TV show because they are firing guns everywhere and no one is getting hit but the cars.  Such bad shots.) And then there's the shopping.  Every chance I get I'm out buying something.

I went down to Emory on Monday for the heart support groups holiday party.  I took my hats and scarves and art work too.  I stopped by the coordinators office to see everyone.  It didn't feel as weird as I expected maybe because Danny never goes with me to their office.  Once or twice in the past he went with me.  I gave them all a hat and a box of truffles and some cards.  Forgot to leave cards for everyone.  I'll just mail them.  Gave some truffles to the ICU where Danny was.  Went to Wendy's office and gave her a present.  We talked, remembered, laughed, teared up a little.  Then on the party.  It was quiet mostly.  A few new people, a few missing people, and some of the same.  Ever changing venue of faces and names.  I've been there too long.  I'm already thinking "who won't be there next year".  What a horrible thought.  They took group pictures of "the hearts", the caregivers, and then both.  Yes, I felt really awkward.  But not being the pics would have made them feel weird.  I probably won't be going much anymore.

It's school time.  What would I do without the constant noise of kids running around making noise while getting ready for school.  I like the calm, quiet when they aren't here but I like the noise sometimes too.

Does TV and movies give us the drama we don't have in our real lives?  Not that we lack drama, it's jut not the kind that is interesting to anyone else.  That's why the writers have to liven it up a bit.  Too much lag time between events in real life.  People get transplants in less than 24 hours, criminals get their guilty verdicts in one day, no one goes to the bathroom, sleeps in, or doesn't talk for hours in the make believe world.

Saturday was a crappy day.  Didn't do anything but sit.  Kerry was in Cherokee and Julie was mostly off doing stuff.  Amber came over and we went to see Rachael's new headstone.  I dressed warm this time.  I can't go there without crying but it was dark and no one could see and I didn't have to talk much.  There was a candle for Danny too.

I wish I could say I hate my life. But that's not what I hate.  I hate being here without Mary and Danny.  I'm not alone but I am lonely even in a crowd.  Sad and lonely.  I make things, I create things, but I don't enjoy.  It's hollow.  One step at a time.  Don't give in, don't cry.

Sunday, December 11, 2011


It's so hard to get out of bed or even breathe sometimes.  I'm rather tired of knitting and crocheting but I still like to look at my yarn.  I'm tired of watching tv, tired of drinking coffee,tired of thinking of things to do to keep from thinking.

I am in the pits today.  Even thinking about shopping isn't making any difference.  I really just don't care what happens.  Life is going on everywhere and I resent every second of it.

Today life sucks.

Sunday, December 4, 2011


No more poems.

Too much beer...too many tears.

It's such a bummer that I can't drink without crying. Same thing happened with Mary but I could call Danny and talk.  Now I just sit and wipe away the tears.  So, I don't drink much.

And I don't write much.

Thursday, December 1, 2011


Last night I got into bed and muted the tv and started to write....

The Path

I've been down this path before
Through the gate I closed the door
Followed footstep others made
And found they didn't fit...

So I tried to make my own
Found I had to walk alone
Step by step I made my way
Keeping others lives at bay

Couldn't take the chance that I
Might step on someone else's life
Destroy the rhythm they had found
To survive this journey bound

Now we are back inside this gate
Hoping that it's not too late
To find another knob to turn
To show myself what I have learned.


I don't know where
I don't know when
I don't know why
I just can't give in

I will ignore
I will escapte
I will reject
This place of fate

But I will survive
I will arrive
at some far away
place to hide

Shielding my face
Pushing away grace
So I can just breathe

This time I will not cry
As long as no one speaks your name
my tears are tucked inside my brain
I learned from you how to hide my pain.

Monday, November 28, 2011


Oddly, several hours after my last post I started getting an inkling of Christmas cheer.  It lasted an hour or so. 

Today I'm getting my hair done.  Maybe looking better will make me feel better.  Who knows.  

Thanks to everyone who reads this for being my friend.  I realize this journal is not especially uplifting and positive.  But it is what it is.
love you

Sunday, November 27, 2011


I have been watching lots of TV movies and shows.  The older movies use music for mood changes a lot more than newer movies.  It rather gives away the next scene.  One scene every one is happy and smiling and the music is light and breezy and cheerful.  Enter, in the next scene, the villain.  But just before the entrance comes the music. It changes suddenly to very low and very high menacing chops of beware tones.  It makes you get ready for the "whatever" that's coming next and you KNOW it's not good because of the music. 

That's what we need in life, beware music.  To prepare us for the chaotic scenes that we can't control.  

I do not like the scary movies where the scene changes suddenly to the horror of "whatever" and your heart stops and your breath is sucked away.  I cannot handle those scenes anymore.  I don't even like the sudden change to happy scenes either.


Saturday, November 26, 2011


So many things are different from when Mary left.  I remember being unable to do most anything without falling apart.  I cried myself to sleep for months.  I cried to and from work for months.  Thanksgiving was 8 months later and still nothing tasted any good.  I didn't eat much for many months after that.  Christmas was a total disaster.  We didn't get a tree until probably the 23rd of December.  I didn't get any decorations down.  The kid hand made them.  I started seeing my grief counselor in September because I could not do anything at work or home.  I guess it was partly the raw anger that made it so hard.  We we going to court every few months and he still wasn't in prison.   When I was finally able to go out to dinner with friends and I would have one small drink sometimes.  Then I would end up in the bathroom crying, calling Danny just to hear his voice and tell him I was sad.  Now I call Tony.

Thanksgiving this year was empty.  Good food, good company, but lonely.  I only shed a few tears at night before going to bed.  I do not cry much but don't ask me anything about Mary or Danny.  I cannot guarantee the out come.  So, I just ignore the pain and loneliness.  I knit or crochet scarfs and hats.  I am afraid of Christmas.  Once again I know I should decorate a tree for the kids.  So this year I will leave it up entirely to Julie.  I have already bought some presents for everyone.  I'll give Danny's to Amber.  She'll like it.  I have one more present to buy Kerry.  I really would just like to skip Christmas but that would be rather hard.  Unless I leave the country.  I like being around the doggies too much.

I told my boss I would help him in December.  I hope I can keep that promise. So much life has been sucked out of me that it's hard to face Danny's life long wish.  

I have to notify people and places that he can be removed from their list.  I know I have to do this and I will next week.  I'll just paint some more pain varnish on my soul and pick up the phone.  Better now than closer to Christmas.  

We are home from Carol's.  The time since I last talked to Danny is starting to grate on my nerves.  He's usually not gone for longer than 3 or 4 days at a time.  I thought I could ignore it longer.  Sometimes it feels like it's been 2 days and sometimes like he's sleeping on his side.  Now it's starting to feel vacant.  

I still haul both my phones around with me waiting for Emory to call. 

Thursday, November 24, 2011

thanks for what

Danny says "thanks for life".  I should honor that and I am trying.  It's beautiful up here in NC. 

I should be doing a lot of things in my head but my heart won't let me.  I should be making sure Tony, Amber, Michael, Zak, Sherrell, Donnie, Carol, Julie and others are doing ok.  But it hurts too much to talk about.  So I'm just pushing time by and ignoring reality as much as I can.  

Guess I'll be stuck in the middle of this desert for awhile.  Nothing has changed yet.  One day maybe it will. 

I so did not want Mary to take Danny.  I begged her not to.  But I can't be mad at her.  She was only following her heart too.  

Friday, November 18, 2011

Another day, another dawn

Kerry goes to bed every night around 11pm, gets up around 2am, comes back to bed around 4am, then up again around 6am.  Fortunately he naps during the day a little so he is getting some rest time.  I wake up each time he stirs but I don't get up.

I got up at 4:30 this morning.  Had a really weird dream, 2 actually.  In the first one a man and a woman were trying to teach me or see if I understood (I think) what it truly means to love someone.   Had to do with driving down a busy street, kinda like that tv show Cash Cab where they are talking and driving and stopping down NYC busy streets.  I kept giving them fairly decent answers but never the correct one.  Then finally I told them I would give my life for my family and that's when they smiled and said "yes", smiled and acted like they had accomplished their mission.  Then they moved on to someone else in my life to ask the same question.  

The second dream started when the first one finished.  I moved from the street to a hospital room with beds that were chin high.  I had to use a ladder to climb into one.  I was having a "procedure" done that required me to take a pill that would "relax" me so I could go to sleep and not remember anything.  I did NOT want to take the pill so I left the room and went to the bathroom.  I found another pill that looked about the same.  I did take one of them but couldn't remember if it was the right one.  So back on the bed I told the nurse I did not want to go to sleep.  She couldn't tell if I had taken the correct pill but the doctor said it was ok anyway and started doing something to me.  I woke up then.

I haven't remembered any dream I've had in ages.  I didn't have any late night ice cream attacks.  I did drink a beer around 9pm.

I am creating Danny's thank you notes. Hopefully I'll have them by the beginning of December.  Today I have reality things I need to do.  I hope they won't take long. Reality makes my stomach hurt.   

Thursday, November 17, 2011

Focus, focus

I have to focus on everything else but Danny.  He is off visiting.  I am able to go down to his room because I have to let the doggies out his back door.  But if I stop to look around or go touch the stuff on the floor or look in his room, I get an immediate stomachache.  Even thinking about it now causes knots.  Laying in bed trying to go to sleep takes me back to the hospital.  Then I cry.  So I go to sleep with the tv on and turn it off after I fall asleep a few times.  I have not dreamed about Danny and I do not particularly want to.  I have dreamed about Mary several times.  I would have given my soul away to have dreamed about Mary when she left but I didn't for many months.  

My tv shows help a little.  But sitting in this chair I see him walking through the dinning room into the kitchen.  I can feel his hands rubbing the back of my neck while he leans over the chair back. I see him in long comfy pants with no shirt his hair flowing freely, talking with a deep, husky, just woke up voice.  Smiling that beautiful smile. 

His clothes bag from our trip to NC is beside my bed.  I looked through it a few times.  Once to get his Mary necklace out.  Julie has the chain now and the locket is in the box with her necklace.  Once to look at his pill box.  Chuyi sleeps beside the bag at night.  I wonder if she can smell him and misses him.  

The doggies aren't eating much.  But they seem happy.  They wonder around all over the house now.  Lil'man sleeps with Julie.  Their life has pretty much flip flopped.  Wonder if they actually "know" Danny isn't here.  I hope they start eating better.  They like snacks and will sneak food from the kids plates.  Just don't want to eat their food.  And they used to gobble it up.  We think Lil'man has epilepsy now.  We've witnessed two seizures. But if they happen outside, he could have had them for years.  

Shopping is not helping as much as it used to.  I do "enjoy" buying things but once home it is all just stuff.  I am designing and making scarves and hats.  Started out being interesting but is sagging now. 

It is really, really, really, hard to follow Danny's words right now.  LIVE LIFE!  

I am not finding a path for this new journey.  Still standing in the middle of the desert.  How long will I be here.  There is no night, no day, just sand. Can't tell where is starts or ends.  If I don't move will my muscles forget how to work?  

I might have to remove myself from the heart group on fb.  Can't deal with all the fluff.  Life goes on and I am stuck.  Kerry is talking about going through Danny's stuff downstairs and getting rid of the junk and seeing what is good.  I don't want to.  I want to leave it untouched for as long a possible.  Just like I did the wall in the living room. Leave the EVERYTHING alone, for as long as it takes to.  We'll see.

Still haven't finished planting the tree.  Gabe wants to help and it has been raining too much.  Hopefully this Saturday.  It has been in the 70's for a few days and now back down to 57.

What am I going to do?  How am I going to do it?  I have to finish up some details with GTF and change my health insurance stuff.  All way too close to reality for me.  I do not want to feel the pain.  I do not want to cry.  I just want to kiss his cheek again and whisper "love you more".

Friday, November 11, 2011

another day

Today is nothingness. I am lost.  I am sad.  No tears.  If they start to leak out, I stop them.  I am not ready for resignation yet.  Danny is still around.  I can feel him.  I can see him when I close my eyes walking through the house to the kitchen.

So, I will continue to escape into TV.

Mary is waiting for him. Neither made it to 30.

I am defeated.  I don't know how long I will remain this way.  Danny says to enjoy life and I am trying but not doing a very good job. 

Wednesday, November 9, 2011

Times two

I'm splitting in two (or is it 'to'?).  I can feel it a every day goes by.  I don't cry but I don't really smile.  I do if someone says something that's supposed to be funny.  Don't want to hurt their feelings.  

I'm also starting to sink into the sand in my desert.  The little glassy spots are their.  I guess they are stepping stones, a path to take if I want.  But my feet are covered by the sand and it feels warm and comfy.  The air is getting a little chilly. 

Now come the 'what if's'.  

The first one I've been thinking about is 'what if Danny's brain was still active and alert and he was screaming inside his head not to give up?'  I mean, no one has ever come back from being in his situation, really come back.  I realize you have to have oxygen to feed the brain but they were giving him oxygen and beating his heart for him.  They didn't have him on any pain meds or knockout stuff.  And there I was holding on to him screaming 'come back', 'don't go', and he could have been saying 'help me - I don't want to go'.  Then they just stopped because there was nothing they could do to keep his body going.  But what about his mind????   I told Mary to push him back, not to let him go to her.  We weren't ready.

So, I have to split myself in half to function. Danny is on his side of the house, in the bathroom or sleeping, or listening to music, or writing songs, - I could go on and on.  I have never gone this long not kissing his cheek or holding his hand.  It's very hard to look at pictures too.

One of me is here, wanting to go shopping and paint, and the other just wants to curl up and sleep.  Neither of me can cry - IT HURTS SO BAD.

Now, I have to take care of my hubby.  He is my strength.  I have none.

Tuesday, November 8, 2011

What to do....

Haven't a fucking clue.  Just sitting in my chair staring at the TV.  No more shows to watch, finished them all last night.

The "party" was ok.  Hope there is never another one.  Can only say hope because you just never know.  Why do things like this bring out people you haven't seen in years and will probably not see again for years?  And some people you thought you'd see you don't.  

For those of you who don't know what to say, don't say anything, just hug.  For those of you who have to say something, I'm not really listening.

With Mary there was incredible anger and hate and the pain was unbearable.  Pain is still there but it has been routed down a different path.  With Danny there is incredible sadness and heart wrenching pain but I am in a bubble and only the sadness can seep in.  I know the pain would end me if I let it take over.  I am crying this morning for the first time since Tony's goodbye message.  Just sad little tears streaming down.  The doggies are at my feet.  They were both sleeping on Danny's sofa this morning.  I sat down and they both put their heads on my lap and Lil'man started moaning a little.  I could read a lot into that but I just held them and cuddled with them. 

Some of Danny's friends have taken little things of his to remind them of him.  I find it facsinating that many of my Mary poems are good to go for Danny. Just change the name.  "A Little Bit of Mary" will do just fine right here.

I am NOT changing his room for a long time. I have not put away his clothes although I have washed most of them.   There are still dirty clothes downstairs in his bathroom and room.  

I guess some things will always be a museum of love.  Mary's things are still downstairs.

Sunday, November 6, 2011

Tomorrow, tomorrow

I love ya, tomorrow.  You're always a day away.

I am having trouble reconciling Danny's wish for me (everyone) to truly live life to its fullest and be happy with my sadness and hatred for life without him.  How can I be truly happy without my children.  I can tell everyone else to listen to Danny but I can't seem to.

One day at a time in the desert.  We'll see.

Thursday, November 3, 2011

more days

Lonely and sad.  Numb and smileless.  Ignoring reality takes all my energy.  Can't think about the box.  Haven't seen his pony tail.  I keep washing his clothes, folding them, putting them away.  The doggies are sleeping at my feet.  

TV, TV, and more TV.  Can't let those thoughts slip in.

Still standing in the middle of the desert. More glass spots are forming.  The sun is overhead but not emitting much heat.  Just staring into nothingness.

Wednesday, November 2, 2011

And the days go by...

I don't think about dreaming about Danny like I did about Mary. Maybe because all I have to do is walk over to his side of the house and he's there.  I've been cleaning up over there a little.  Every time he goes off I wash all the covers on his sofa and put away all his clothes.  He just keeps them in the clothes baskets and rummages through them when he needs socks or pants or whatever.  There are 7 baskets sitting over there.  My work is cut out for me.  

Tony cleaned up Danny's pile of camping, fishing, junk stuff in the garage.  Now we can walk around in there. He put up my punching bag so I have something to hit and kick.

Monday I took Kerry to see Craig.  His feet have been swelling.  Found out that there is a lot of fluid floating around in his belly.  He's been trying to eat better and exercise as best he can but it hasn't been working well. He's always tired and huffing and puffing too.  Craig said there probably is something wrong with his liver so he took blood samples and sent him for a liver scan on Tuesday. Now we're waiting for results.  Kerry's a lot like his dad. I hope what ever is wrong and be fixed quickly so he can get back to being himself and active again.

Hurry up and wait....that's our life in a nut shell.

Last night was not much fun.  I do not cry much.  Makes me feel like I am not as affected this time a last time.  And when I say "this time" and "last time" I wonder when the "next time" is going to be.  Makes it hard to breathe.  Still I don't cry unless I'm alone and it's that soft wailing sound that hurts so much I can't stand it.  So I stop.  It's so much easier and less painful to think he's just gone to visit someone.  I don't write poems because I won't let it hurt.  I did read them all again for the first time in over a year.

I just can't stand the hurt so I do what Danny did and ignore it as much as possible.  I will not let it in.  This is NOT strength, it's self preservation.  I've become very familiar with that concept.

But last night I asked Bill to come and visit Kerry.  Donnie was here too.  Kerry is a little lonely and scared.  I can't help him.  Then a few others came by and I was fixing dinner plates and taking care of Anna everyone was talking and with Kerry.  He sat on the sofa instead of in his room.  It finally became overwhelming for me and closed myself in Kerry's room and watch TV between crying and being pissed at the world.  I don't know what I want, people to visit and talk about Danny or not talk about Danny, or leave me alone or ignore me.  It's all so empty when I stop and look around.

Tony's going hiking in NC today.  I'm going to sit and escape.  If I write something tomorrow then I made it through today. 

Sunday, October 30, 2011

Speeches and shit

Our son, Daniel Kerry Couey lost is fight for life but won the battle for love on Wednesday, October 26th, 2011.

Danny received his first heart transplant in 1997 when he was 14 years old.  In 2004 he was re-listed to wait for another heart. He received it on Monday, October 24th and then passed it on by donating his eyes. 

Danny never defined himself by his limitations and is an inspiration to all who knew him. He loved life fiercely and never feared the unknown, especially death. Teaching people to be true to themselves and to do the right thing was a calling of his. He said, "everyone deserves a second chance, so don't fuckin' blow it."  After receiving his his 2nd chance we were all in awe of his donor family's gift of life in the midst of their heartbreak. Then having faced his sister Mary's death, our entire family now truly understands what that gift means.  Danny donated his eyes so others can see the true beauty of a smile, the love of family and friends, and the undefinable price of living.  

Danny's wish is for everyone to sign up to be an organ donor.  It is the greatest gift you can give. 

Day 4 of my next life

I'm still standing in the middle of the desert.  I can see spots around me turning to glass so slick you would slide off if you tried to stand on it. I think.  Everything else is still devoid of color, movement, taste, smell.  But there is oxygen and I am not blind.  I'm still standing in the same spot, not sinking into the sea of sand.  I'm not sure what the glass spots are. There is a spec of motion on the edge of my vision.  Could be the start of a migraine, or the end.

I do not understand why the beginning of this road is so different from the last road.  I'm hoping it's because my brain realized I can't withstand that kind of pain ever again.  

I am moody today. I am pissed at everyone. I may not be nice today.  I need to build my wall taller. But how do you build a wall out of sand?  Is life a bowl of sand?  Sand castles eventually dry up and fall apart. 

Every time I let reality in for even a second my chest is flattened by a steam roller.  It hurts so fucking much I don't know what to do.  Writing doesn't help, not yet. I need my punching bag.

Breathe in breathe out breathe in breathe out breathe in breathe out breathe in breathe out...

The fire is mesmerizing. I love to hear the flicker of flames, snap and crackle of the wood, and feel the warmth even if it is only one sided.  You have to keep turning around to wrap up in it.  Just like life, you have to be an active part of the relationship or it won't work.  Else one side will fry and one side will freeze. Take responsibility for your actions.

Saturday, October 29, 2011

Day 3 of my next life

The morning was hard.  I could not stop crying.  I tried.  I didn't get out of my chair all day long.  My wall started crumbling but I patched it back up.  It's mostly patch work now.  I watched lots of TV shows to help with fending off reality. 

Friday, October 28, 2011

Day 2 of my next life

This desert is calm.  No sand storms, no searing heat, no inviting mirages, nothing but sand everywhere.  I've just been standing here looking around.  There is no path, nothing to help me know where to turn. And I don't know what to do.  I don't know where north or west is.  

I'm not hungry or tired.  I don't really feel anything.  I don't hear anything. I guess this is what existence is when you've lost sight of where you were heading.  Maybe life has to catch up with you to populate your world.  I don't want to populate it if Danny isn't coming home.  

I cry but I do not let myself sob. I remember how that felt with Mary and I will not let myself go there.  I cannot handle that kind of pain again.  And Danny knows that. I am not a walking zombie, I am numb and that's just fine with me.

Danny's friends are hanging out in his room, doing what they always do, talking, laughing, drinking, watching TV, waiting for him to come up stairs.  I LOVE IT.  I'm waiting too.  I see him walking around the house, mostly from his side into the kitchen.  Just strolling along, not hurrying.  He never hurried except to go to the bathroom or go to Zak's or Mary's.  

Love you more, love you most. 

Thursday, October 27, 2011

Here we go again...again...

Danny is gone. And there's no one to blame.  My last words before they wheeled him away for his transplant were "see you on the other side". 

I have been ripped from my nice warm fuzzy anticipation bubble and slam dunked into the middle of a vast, empty, desert.  I am still wondering how this happened and why it's not my beach place.

Monday, September 12, 2011


I went to see a movie yesterday.  I watch funny movies and specific tv shows to get away from the stress and wave crashes of everyday life.  Let's face it, everyone has some kind of stress in their life, not just me. I am not special.  

So, I've been thinking lately about that beach of mine.  Why I like it so much or feel more comfortable waiting for the next storm rather than looking for a path through the trees.  Not sure.  But I find myself building sand castles in the surf.  Got to think on that one awhile.

Sunday, September 11, 2011

Just another day.

I know.... I missed the entire month of August.  Just as well, way too much going on to even think clearly.  

Maybe I'll just post a sentence or two here each night instead of writing a chapter.
Today everyone is remembering Sept 11, 2001.  And I'm wondering why the world doesn't recognize that Mary is missing also...  Am I that self centered or insensitive?  Would it make me feel any better if there was a Mary Day?  No, probably not.  

Anyway, back to work.  Way to busy to piss and moan about my life.  Remember, Rose, you are not special to anyone but your family.  You are just like everyone else.

Love you Mary... love you

Friday, August 5, 2011

Have fun!

My baby's going to the beach today.  He's not on the active transplant list so he can go off for a few days.  First time in about 5 years he's gone more than 100 miles away.  Wish he could be going to Alaska but that's a little too far.

I hope he has the time of his life!

Sunday, July 31, 2011

Not me

I really don't like sleeping anymore.  I know I have to, I know my body needs to rest and recuperate.  But I don't want to miss out on life.  Even if most of my sleep time is at night, in the dark, while everyone else is asleep.  I know this.

Once in awhile I do sleep in on a weekend morning.  But I'd rather be sitting on the back porch in the cool morning air.  Unfortunately right now it's not cool at 7am, or at 3am.

I don't want to dream either.  I know I've complained about hardly every dreaming about Mary.  If I can't or don't dream about her, what's the use in dreaming or trying to. Every few years I dream about my mother.  Sometimes I don't even recognize her.  I have very few pictures of her when I knew her.  Most of them are when Ann and Vyvyan were children.  I have pictures of Mary everywhere.  Mostly so the kids won't forget what she looks like.

Danny's feet are still swelling.  They were better when he got up this morning but since he's been upright, they have started swelling again.  I hope he is able to go to the beach.   The momma in me wants him home so I can take care of him.  The other momma wants him to be able to enjoy this time he has to leave Ga.

Life sucks.

Here we go again...

So now it's Sunday morning and his feet are huge again.  Danny went to a 311 concert last night.  Didn't drink or eat anything but when he got home his feet were almost as big as they were when they put him in the hospital.  He could still wiggle his toes but can hardly bend his ankles.  I cooked him some steak and eggs and grits (sans salt) and he added up all the fluids he had today so he could see how much he could drink with his dinner.  Then he took a diuretic booster and went to eat with his feet up in the air for the night.  If they don't shrink by today at noon he's going to stay there all day with his feet up.  I, of course, am calling the coordinators to tell them.  

How can he go to the beach if his feet swell this much this fast?  He won't be able to stand up fishing much.  And what fun is it sitting in a hotel room with your feet up staring out the window at the waves?

I really need the docs to fix my baby so he can enjoy the little break he's getting.  Then  I need them to move him up on the list without putting him in the hospital, but that's not going to happen.  If needing both organs does not move you up either then what good is it doing us.  I told them not to let his other organs fail.  They said his liver and lungs are fine but that's what they said about his kidneys when he checked out of Emory.  THEN the drop the bomb at his checkup.

Bring on the Rain is becoming my theme song.  I wish I believed it as much as I did before.  What will happen to me, to Kerry, to Julie if something happens to Danny?  I just don't know.

What's it like to know that when they are putting you to sleep for your transplant there's a chance you might not wake up?  Yes, it could happen to anyone for any operation but they are taking your HEART out and putting it back.  I go under for pacemaker replacement but not in the same way.  This has happened before to Danny's friend.  I know he must think about it.  I can't help wondering.  And don't give me that shit about don't cross a bridge before you get to it.  I've been there and crossed it.  And I can't get back.

Yes, I'm worried, about everything, Danny, Kerry, work...  Julie has someone to worry about her now.  (I'm soooo glad.  He is very nice.)  I've got to suck it up and keep going.  And I will somehow.  It's not "strength", it's love.

Friday, July 29, 2011

So, now Danny's home.  From Sunday night to Friday afternoon he shrunk up from 153#'s to 140#'s.  But he's feeling much better.  And looks so happy.  

I started looking through all the pictures on my floor.  They're ones I took off the hallway wall when I was painting. I can't seem to figure out how to get the into those black frames I bought.  I wanted my hallway to look nice and have some continuity instead pictures in all those mis-matched multicolored 2nd hand frames. But I have too many pictures and they don't fit the little "windows" in the frames.

I forgot to post the above and now it is not important anymore.
Danny had a check up today so they could see if his fluid build up was adjusting well.  He's gained 10 pounds since last Friday when he left Emory. But it's not affecting his heart as of yet.

Now for the bad news.  They have put him on the inactive heart list so he can have some more tests done to his kidneys.  The scan they did when he was there shows some "differences" from the scan he gets annually and they are concerned.  So the kidney transplant docs are going to take a look at him.  They said it might be nothing but they might want to do a biopsy.  The worst outcome (I believe) is he may need a heart / kidney transplant.

I haven't done any research on kidney disease or transplants yet.  But I will be asking a lot of questions next week and when I get all my answers I know I still won't like it.

After listening to the doc answers all my questions and thinking about the situation for a few minutes, Danny asked him "does this mean I can go to the beach?"  He has such an amazing outlook on things.  That didn't even cross my mind!  Yes, he can go to the beach.  So, after all his tests are finished he's heading somewhere he can fish on the shore.  I did ask if he could go to Alaska but, alas, that's a little too far!! 

I have to say I am really getting tired of this ghost called Chaos.  Each checkup Danny goes to I get my self ready for what "I" think the bad news might be.  This time is was maybe they'll put him back in the hospital next week to get the fluid off again.  But nnnnoooooooooo that's not bad enough.  Chaos always has to one up me.  Chaos must be an "alpha male" as Danny calls it.  It has to one up me all the time.

Well, now I'm getting pissed.

Tuesday, July 19, 2011

Back again

Danny is back in the hospital again.  Retaining too much fluid.  Trying to keep his kidneys working.  He's bored stiff.  I don't blame him.  But he's feeling better and can wiggle his toes now.  

I'm here with him. He brings Mary with him everywhere he goes. 

Nothing can happen to him that they can't fix.  Someone needs to understand that. 

Can't let it go

I watched an episode of Memphis Beat last week.   Dwight comes to terms with his father's killer and his father's actions.  He realizes he's been thinking about his father's death and his killer all these years instead of thinking about the wonderful father he was to Dwight.  

So I started thinking long and hard.  I do talk about Mary all the time, things she would do, things that make her laugh.  (It is still extremely hard to write or talk about Mary using the past tense.)  Several times over the last month people have asked how many children I have.  I say 3 and when I get to Mary I say "she would be 30".  Then I try really, really hard not to cry.  But most times we are remembering all kinds of happenings around the house when Mary would say or do something.  

But I have spent most of the last two years watching her killer walk around free, still drinking and driving and I have spent a lot of time seeing her screaming in my imaginings.  I can't stop the images from appearing but they are coming less and less often. I'm still really pissed and angry at him.  

We do have a lawsuit against him so we continue to have some kind of long distance contact with him even though he is in jail.  30 months just isn't enough justice for me.

Maybe I'm not the person I thought I was.  I'm just me, changing with the winds of time and chaos of life.  

I'm sorry.

Ok. I need to write here more often.  I get these things in my head but I don't stop long enough to write it down.  Then I think of something else.  

So, here goes from last week...

What I'm going to say is going to sound really, really mean and self centered and I should know better than to feel this way but here it is... For all the heart recipients and donor families who get to meet I say, "Great, good for you, but I am so jealous I can hardly spit."  I can only assume being able to help someone continue living somehow keeps the family member alive for everyone else. I don't know if helps with the grief but their remains were not wasted.  To all those families who tried to donate their loved ones remains but couldn't for some reason, I understand.  For me it was like having a double whammy hit me in the face.  Life was thrown away twice.  Now there are many reasons a wannabe donor can't donate.  I understand that. I know all doctors wish they could use all organs that are donated.  But Mary didn't get past the starting gate.  And it hurt inconceivably to know that what she wanted most when she died was to give the gift of life to someone like someone did for Danny.

We've never met Danny's donor family.  And that's alright.  I'm not sure I want to see others celebrating when I am crushed inside.  Actually, I totally know I did not want that for a long, long time after Mary left.  But at some point I did resent the ME seemingly not trying to help us donate something, anything in those early morning hours.  And now I would give anything to have a little bit of Mary walking around, living, breathing, helping someone else enjoy life.

I am truly sorry I am so jealous that I don't always feel joy for others when I should.  But I had to write it down to get it out.  Maybe this will help.

I told the judge that man killed a lot more people than just Mary.  I still hate him. I don't plan on changing any time soon.  Does that make me a bad person?  

Tuesday, July 12, 2011

Home bitter sweet home

Last week was OK.  Didn't enjoy it as much as I used to when I traveled.  Kept waiting for the phone to ring or rather, kept wishing the phone would ring.  Away from family and doggies I'm rather at a loss for feeling comfy.  Not sure I'd be a good consultant.

Of course I had to call Danny every day sometimes two or three text messages.  Don't want him to forget his momma!   Called my hubby to say good night every night.

I had a dream with Mary in it last weekend.  I woke up and remember every detail so I wouldn't forget it later.  It wasn't about her but she was my companion on my adventure in the dream.  Just like she was in years gone by.  It's fading a little now.  This is the 2nd dream in the last month.  Don't remember it at all but I know I dreamed about her.  I don't have many.  I remember the one 6 -7 months ago oddly.  And then there were one or two the year before.  I want so badly to dream more about her.  I talk to her just like she's sitting in front of me.
Sometimes, at odd moments, I get a vision of the crime scene and I cringe and all the horrible feelings come back.  Last week I was telling someone about my children.  Everyone always asks you "how many kids do you have" when you first meet them.  I literally steeled myself to answer without crying because I knew I would.  I talked very slowly and didn't dwell on details.  I still can't talk past describing Mary without falling apart.

Still waiting to hear from Emory about Danny's antibodies.  I will call tomorrow if they don't call me by the afternoon.  Another person got a heart yesterday.  No one on 1A with type A blood so another heart passed him by.  Guess I'm just jealous.  Makes me feel like I'm waiting on a side of beef.  And, THAT makes me feel like trash. 

This last weekend I did nothing.  I didn't play in my art either.  Just didn't have any incentive.  Not sure why. Maybe I was just tired.

Still trying to figure out if I feel better now that the #*&^#% that killed Mary is behind bars.  Not yet.  Not yet.  Don't know if it will ever be.  He'll be out in two years and I'll be pissed again. 

Monday, July 4, 2011

Ying / Yang

So here I am on a plane bound for Toronto with nothing to do but type.  They do have flights back to Atlanta as late as 10pm.  Said good bye to Danny this morning at 5:30am when he got home from a friend’s house.  After being in the hospital he’s taking advantage of being out and about so no long term plans for him.  He’s living life to the fullest as best he can.

I am terrified of taking off and landing in a plane.  Talking to Danny yesterday he said something about with all the terrorists around today might be the end of the world and if we make it we have to keep going on.  This was in response to me not wanting to leave with him still on the list.  I told him I didn’t want to be the only one left if terrorists got us.  He said why not?  You have to carry on.  I said I didn’t want to be around if none of my family was alive.  Again he said why not, you will have others who make it that you have to take care of. 

Very interesting short conversation.  I know he could make it without me  but I am a parent and parents leave the earth first.  Unless you’re a parent  you just don’t understand what it feels like to see your child in harms way.

So, Michael got his heart on Friday and Jess is still waiting.  She posted a note on FB saying she was praying for a whole, strong heart to come her way.  Maybe it’s the “first time around” transplant feeling that makes you say that.  Self-preservation is after all very strong and very normal.   But for me, the heart that Danny will get will mean death for someone else.  Maybe that’s because I’ve had to let Mary go and couldn’t donate anything.  Maybe it’s because I felt the “sharp knife of a short life” with Danny’s first heart when the aunt who thought her nephew gave Danny his second chance.  It really hit home that when I was “thanking god” for a heart someone else was saying WTF….I wrote the family a lot of letters but no answer.  Not until Mary left did I understand that words don’t matter.  Especially after she couldn’t donate anything.  My life didn’t matter much.  Only Danny’s and Tony’s and Kerry’s and Julie’s and the kid’s life mattered.  If I gave up it would be worse on them.  So I struggled to breathe.

Now here I am doing the one thing I haven’t done in over 7 years.  Be more than 2 hours away from Danny through my choice.

I hope and pray (?) that these antibody treatments give him a better chance of matching someone.  I’ll have to deal with the guilt later.  That’s the ying and yang of life I guess.

See you in Toronto!

Sunday, July 3, 2011


This has not been the best weekend.  I think one of my best friends is upset with me and I don't know why.  Then I was doing an on line check in with Delta and found I made the reservations for the wrong day.  So I'm waiting on hold to see if they can change my flight.  My stomach is in knots.  i am so screwed.

Had a night mare last night that they took Danny off the list completely because his antibodies were too strong.  Twice in the dream I told my self that this was a dream but I couldn't wake up completely.  So glad when I finally did.  No more sleeping on the sofa chair.  My bed was covered with my clothes and I didn't want to move them. Kerry is in NC with Donnie and Carol. So I figured it wouldn't matter where I slept.

Yesterday the guy I visited in the hospital got a heart.  He was very close to not making it.  Everyone is praising god.  And all I can think about is the donor family.

Monday, June 27, 2011

Chemo oceans

I have spent every day but one at the hospital with Danny for 6 or more hours.  Sometimes he's sleeping, sometimes awake chatting with me, sometimes laying watching TV.  I'm just there to be there whether he "needs" me or not.  Could be at times I'm there for me.  I am taking some days off and working some days.  But, I will not be away from Danny lest the number of days he's around me is shortened.  The "empty nest syndrome" kicks in every now and then even though Julie is still here.  I am NOT talking about the obvious negative outcome of which I will not even write down.  I'm talking about when he's healthy again he will be out and about on his own as he should be.  It was hard enough watching Julie leave home years ago.  I'm just used to Danny being around.  But I want him happy living the life he wants to live by the grace of an unselfish act of love from a donor.

The meds he is getting are chemo meds.  Sunday he said that Saturday he really wasn't feeling all that good.  After I left (and we went out to dinner with friends) he sat in his hospital bed with leg cramps, stomach cramps, and lack of sleep.  He showed me the vein on his left arm, that the IV was in where the meds went.  It was dark and  outlined from wrist to shoulder and it hurt to touch it.  Must have been the meds we thought.  

So Sunday when he was feeling a little better (and I was feeling slightly guilty that I was eating out and drinking beer) he said "My pinky toenail has touched the ocean of chemo meds.  I can only imagine what a cancer patient goes through."

So, today, Monday, his dad and I went down early because he was getting pheresis again and the chemo med (Velcade).  He was already up and eating. By eating I mean a few bites here and there.  He has not eaten much the entire week he's been there.  Weight getting a little low.  Morning blood test had been done. One of his doctors came in and told us he will get his pheresis but not the meds because his white cell count was too low. They expected that but his got low faster than expected.  So he was smiling a little.  Still pretty tired.  Sleeping in a hospital is not that easy.  

Dr Book said if his levels weren't up tomorrow they would wait till Wed to give him the meds.  He's supposed to get out on Thursday but now it's a day by day thing. Then they will do a blood test and two weeks later another one to make sure the levels are staying down.  As needed they will give him more treatments but hopefully not the long term hospital stays.  

Plasma pheresis requires a catheter in his neck to pump blood from him into a machine that removes and replaces his plasma and pumps it back into him.  His neck is uncomfortable for the entire stay but necessary.

That boy NEVER complains out loud about what he thinks is necessary to endure to live. If they ask him specific questions he'll answer.  He hasn't been sleeping well but he hasn't asked for a sleeping aide because he thought he'd just get through it.  I wish I had said something to the docs.  Our chaplain friend, Wendy, told them he wasn't sleeping well and they ordered something for him.  He said thanks that would be awesome.  He thinks even though he's got it rough it's not nearly as bad as so many others have it.

As Doc Holiday said, "There is no 'normal' life, there is only life.  So, go live it."

Sunday, June 26, 2011

Tomorrow and today

Gotta get ready to spend time with Danny at Emory.  So why and I sitting here typing?  What I need is an energy pill.  My body keeps getting tired when my mind wants to go on.

So, now it's Sunday 6/26.  Danny's been here a week and has had two treatments and has two more to go.  One tomorrow and one on Thursday.  His antibodies are so high now the chance of matching someone is very slim.  The plasma pheresis will remove the antibodies and the meds hopefully will keep them away - somehow -. Hopefully.  Not sure how long they can be kept at bay.  He may have to keep getting them long after he has a transplant.

Found out these meds are cancer meds that also help with reducing anti bodies.  So, he's having some side effects that make him uncomfortable but aren't going to stop the treatments.  They said he might feel like he's got the flu.  He told a friend, "It's all good.  This too shall pass."  

He can't eat much without stomach cramps.  Hope he doesn't loose too much weight.

I've been having a lot of "what if's".  I keep trying to push them away but it isn't working very well.  I wish Danny could go up to the lake in Alaska for a few weeks. But that would take him off the active list and he might miss his chance.  However, he might not have another chance to go to the lake.  Damned if you do and damned if you don't.  What to do, what to do, what to do?  So much I would have done differently if we had known he would be on the list this long.

Sometimes I sit and think and sometimes I sit and cry.  Not sure which helps.  Thinking hurts and crying makes my nose red.

Just want it all to stop for his sake.  I want it finished and over with and to see him fishing at the lake with buds.

Oh well

Everything I have to say has been said before
By some other face in some other place
Along some other shore

So why do I bother writing my thoughts
I can't rhyme my words, have no time
Life still bleeds it's do's and ought's 

to be continued...

Saturday, June 25, 2011

Just for you

Just for you I am smiling
Just for you I won't give up
Just for you I am surviving
I know you will be here no matter what

Sunday, June 19, 2011


I have to re-evaluate my point of view.  Maybe, just maybe, everyone else doesn't see things the way I do.  Amazing concept isn't it?  Actually it dawned on me yesterday that what I think is important isn't important to everyone even though we live in the same world, same yard, same house, same room.  I wish I could explain this better cause I'm sounding like I'm totally self centered. So, here goes.

Yesterday with all the storms the tomato plants in my front yard fell over.  I have two that are in cages right beside my front porch. (The dirt there is awesome and I don't have to water them.)  I've been trying to get Kerry to fix the cages so that they don't fall over in the wind storm.  He hasn't done it (obviously).  As I was looking at them some little smart ass voice inside me said "who gives a crap about some spindly ole tomato plants? You were the one who wanted them, you're the one who likes to dig in the yard, you're the one who thinks they should be all neat and pretty.  So go fix them yourself."  And the little bastard has a point.  I look at my front yard and see weeds and bald spots.  Everyone else around me sees green stuff on dirt.  Who cares if it's a weed, it's green.

I see a messy house and everyone else sees a well lived in, comfy place to lay their head.  

I'M the one who doesn't fit in here.  And I'm the one who keeps trying to change everyone else.  Can't do it, won't work.  I should stop.    And I try to but it's just not working. So something has to change.

And I think that something or someone is me.  I know I've changed a lot since Mary left.  Some people can tell, some can't.  Guess I expect others to live up to my expectations.  Must be that control factor.  I know I can't live up to theirs and I don't want to try. So what is it inside me that wants everything to be and look like I want it to?  

So now I'm going to try to change myself.  I have to just let life go as it goes.  I can only control what I put into my mouth and I'm lucky I can do that. So, I'm going to start getting rid of the junk in my life that is clouding my perspective.  I have a lot of "stuff" that everyone else thinks is junk.  So maybe it is.  If I give up some of them maybe I'll have more time to be more patient.  I don't know.  Am I grasping at straws?  

Guess I'll figure it out one day. 

Saturday, June 18, 2011

At Last...

I've been asking off and on why the docs don't try to reduce Danny's antibodies so he has a better chance of matching a donor heart.  Mostly we're told that reducing them now will only mean they'll come back later.  But newer and better medicines have come out in the last few years.  Or at least they have been used by enough heart centers for our docs to get a warm fuzzy.  So, Danny's checking in at Emory on Monday for 10 days to start a regimen of procedures and meds to lower his antibodies and hopefully keep them down.  No guarantee's but name something that is guaranteed in this world. 

I have to admit I am nervous, scared, anxious, even a little worried.  Time to go play in my art stuff and relax. 

Tuesday, May 24, 2011


Poetry is not an opinion expressed.  It is a song that arises from a bleeding heart or a smiling mouth.
Kahlil Gibran

Today is better. Questions answered.

Why do I cry at everyone else's pain?  I can't watch a tv show (not the reality ones) without crying if it's sad.  I try to only watch the ones that aren't sad but every now and then one episode gets me.  I cry when an ambulance drives by flashing its lights and blaring its bells.  I have no idea if anyone is in it but I cry anyway.  Rather embarrassing if I'm with someone.  I cry when I listen to the news on the radio - usually driving to work.  I had to stop listening because my mascara would be streaked down my face when I got to work.  Looking at ads in magazines of children with clef palates they put in the back pages is a no-no.  I quit listening to the news on TV and the ads too.  Everywhere we are bombarded with the horror and cruelty and "accidents" of life.  Now, you say there is just as much joy in life as sadness but where is it?  I see it but not near as much as pain and suffering.  

I'm just tired of it all.  Tired of trying to find my place in this world.  Tired of pain.  Tired of not being able to fix anything.  Tired of complaining about being tired. I don't want to prepare for the future.  I don't want to have any idea of what's going to happen.  I just want to be.  Ah,"to be or not to be, that is the question".   I wonder if he was feeling the same way I'm feeling.

Come back tomorrow and see if I feel the same as today.  Probably not but that's what chaos is made of.  Ignorance.

Sunday, May 22, 2011

Oh, NO

Is there anything else that needs to be shoved down my throat? Please don't wait till the "right moment", just say it, I'm a big girl.  And Danny is a big boy.

Danny's check up on Thursday was somewhat as expected but a lot of WTF.  Yes, his heart is getting worse, but we expected that.  Guess I didn't know what comes with "getting worse".  His good side is no longer "good" and probably will need a stent to keep it open.  Thankfully that's like getting a cath, no chest cracking.  And, will need to go back on some meds that are anticoagulants but help in stopping his veins and arteries from blocking.  The docs have to weigh the pros and cons of giving them to him.  But, Rapamune may also reduce the creation of his antibodies.  That was one piece of light.  Now for the slam dunk.  He will never be put on 1A status unless his heart stops or he has a stroke or something "life threatening".  Just because his diagnosis is CAD.  UNOS hasn't updated their rules and regs on heart statuses in forever.  So the only thing I can do is write to UNOS and give them my opinion.  I did offer to punch Danny in the chest while he was there to get it to stop and they could move him up then.  No one liked that idea.  But it's a mother's grasp.

He worries about me worrying.  I worry about him worrying about me.  Vicious circle.  But we agreed to worry together for a few minutes and do what we gotta do.  We are big kids.  

I am planning on going to Canada if nothing is going on with Danny.  That will make him feel better because he's not holding me back.  First time I've left Atlanta without him in 7 years.

I don't feel like writing anymore.  And.....I'm not giving up my space on the beach.....yet.

Wednesday, May 18, 2011

Beach vs Forest

I'm standing on the beach watching the waves crash at my feet. There is more light in the sky or maybe I've lifted my head up enough that my eyes are becoming more aware of the world around me. 

I've been walking up and down the beach for ages now.  Walking by the spot where I landed that night.  You'd have thought the sand would have filled in the indentation where I lay for months but it hasn't.  It's just a carved out hole that the ocean water keeps flowing into and out of.  I'm afraid to touch it lest it fall apart.  But the curves look hard and solid like rough cement.  I must have laid there so long the sand solidified.

There are footprints all around the hole from the rest of my family standing beside me.  They have hardened too.  It all sort of forms a negative statue.  I never saw them beside me all those months.  I don't know who was holding them up while I was consumed with self pity and grief because it wasn't me, I am ashamed to say.  I know they were hurting as much as I was but I couldn't help myself much less them. But I know they hung around me because there are thousands of foot prints everywhere.  Some may be from friends, I just can't tell. I'm sure there must be.

I have worn a path along the beach but I've never seen the footprints until now.  How could I not have noticed?

In my walks from time to time I've seen other people laying on the beach like I was.  I didn't stop or I couldn't stop to help them because it hurt me to look at them.  I could feel their sorrow down in my bones so sharply that I started walking faster.  That's not being a caring person.  It's called self preservation I guess.  But it doesn't feel nice.  My only consolation is that they don't know I was there.

I walked in several directions towards the tree line but always came back because I felt like I was leaving something behind.  I've know others have made it to the tree line and beyond because I don't see them anymore.  I don't hear them anymore either.  I see others standing at the tree line waiting for something, a push, a pull, from someone, something.  As much as I want to get to the forest, I can't.

Maybe one day I will.

Monday, May 16, 2011

Odd questions #1

Why do all the TV shows that I watch have to make the last 3 minutes be a "funny poignant personal" involving almost the entire cast?  I don't like reality shows but this can be annoying.

Why do the innocents always become the victims? 


Pictures from my heart

Finally, finally, finally... I actually put glue to paper and created something.  Or rather something in the making, yet to be determined.  I bought some books and found one with DIY instructions.  But, I'm the one who has to physically do the steps.  Here's how it went:

Friday night I sat in my chair, watching a little TV, perusing all the books that I got in the mail this week.  I dreamed, wrote down the things I needed to buy to start creating, and picked up around the house a little.  After telling myself - I WILL DO SOMETHING TOMORROW, I went to bed.

Saturday morning I did chores until noon.  Then hopped in the car with my list and went off to Hobby Lobby.  Found a few things for exercise #1.  Went grocery shopping next and then home.  By this time it was 4pm.  I took everything down stairs and started looking through all my stuff I had boxed away.  I remembered things I can't find and found things I can't remember.  I have to say I have a lot of "stuff" down there.  Some of it kinda cool, some of it junk.  But this first exercise has proven to me that even junk can light a creative spark. I found the card. I then went back up and started cooking dinner, put it in the oven to cook, and went back downstairs to confront myself.  I've realized that if I don't actually DO something with all this stuff not only have a wasted my money and my time but I'll be a fraud to myself.  And one of life's lessons is to be true to yourself.

So, I started.  After the first step was finished I did not feel the energy flowing.  I felt like a loser who thinks they can do something when they really can't.  But, I did also realize that I have to get a little further to see any results.  I guess no one judges their own creations as someone else would.  "It doesn't matter what other people think as long as you like what you are doing."  I have to keep reminding myself of that.

The book also says to start an art journal. So, I am.  I've started two pages.  It says to work on more than one thing at a time or have multiple works at different stages of one theme.  I'm trying to do these lessons or exercises as if someone was expecting them or grading me on them.  Maybe Mary will.

Sunday morning I slept in till 9am.  Talked to Julie, did some more chores, and was waiting till noon so we could go pick up my other two rings.  Then Carol called to say she and Donnie were dropping by. We took of for the jewelry store and Joann's to buy some more stuff for my art.  I still hadn't done anything yet today.  Carol left and Julie went to work and I went downstairs.    Danny came down to see what I was doing.  He liked it.  That should have made me feel better  but my insecurities (yes, I have many) still hung out there like dirty socks.  He said exactly what I would say to someone else, "It doesn't matter what others think".  I looked at my art (now I can call it my art) and finally liked it.  It's not finished but it's cool.

But I can see I need to keep focused on completing the exercises or else I'll quit.  I'm working on a wine bottle too!

Sunday, May 15, 2011


OK. So I've had a day to think about the card.  I did not burst into tears when I heard her voice.   She said "ooooooo.  Can you hear me?  Happy Birthday!"  Kind of drawn out.  I can see her saying it with that grin on her face.  

The last thing Mary said to me was "love you bye" on Sunday night when she got into Danny's truck to go home.  I waved bye to her as Taco was jumping in her lap while Danny was backing out of the driveway.  I never called her cell phone to hear her voice.  We turned off the answering machine at her house the first time we went there.  I never called it either.  It hurt too much to even think about hearing her voice again.  Then this happened.

I didn't cry, really.  Just sat there and hugged the card.  But, when I showed the card to Danny and Kerry and Julie (all separately), I did squeeze some tears out.  I tried to hold them back but couldn't.  I opened the card a few more times.  She sounds so happy and unaware.

Danny smiled and played it twice.  Kerry stuck his lip out in a pout.  Julie hid her eyes while I left the room.  The card is on my dresser.  Before going to bed Kerry played the card two more times.

I don't need to play it, I can hear it in my head as a perpetual loop recording.  I wish it wasn't a recording.  I hope the battery never runs down.