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.

07/24/11
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.


07/29
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.

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?  

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. 

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!

Arrgggghhhhh

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.