Follow Up to Facebook issue

Wow.  I heard from so many people in response to yesterday's post about Facebook.  I figured I couldn't be the only one that felt the way I do.  Like something was stolen from me that I should have been able to preserve.  Like Facebook misrepresents what "memorializing" a page means.  I hope I will be able to spread the word about this and maybe bring about a change.  I'm really not the type of person who normally pursues something like this.  I am not a world changer.  I am a behind the scenes player.  I'm a supporter.  I avoid the spotlight.  I don't know whether anything will happen in the long run, but I won't let this go without at least trying.

One person made the comment:  "FB made her page into a glorified funeral sign it sheet."  I agreed with that.  What I had told people privately was that her page was now like a gravestone at a cemetary.  Someplace people would symbolically go to talk to her, but not someplace where she really was or ever had been".

My first line of attack is to try to spread through Facebook (seems ironic, I know).  I know a lot of people read the blog yesterday (about 2500 according to the stats).  If half of the people who read it, reposted the link, we would be well on the way to change.  But I doubt that happened.  I'm sure most people think like I do.  Sure, I care about this issue, but I don't know anyone else who has been affected by it.  But think about it...you don't know who is on your friend's friend lists.  So, I ask everyone, if they see this, to please repost the link to the original blog.  At the minimum it could help someone not make the mistake I made.

http://katylynnsays.blogspot.com/2010/10/facebook-stole-my-daughters-words.html

Some of the comments that I received were heart-breaking.  A family who just memorialized a page last week.  A woman who accidentally memorialized her husband's page.  A family who asked for access to their child's page only to be told that since they had said the child was deceased, the page would be memorialized automatically.  And worst of all, pages that were memorialized WITHOUT the knowledge of the immediate family!

The biggest problem with Facebook proliferation is that things move so quickly through everyone's wall.  I know a lot of people who reposted the link, but even I, who was watching, didn't see the notification on my wall.  So feel free to repost the link in a few days.

My second line of attack is to try to get the attention of the media.  I am not going to do that immediately.  I did contact my local newspaper yesterday (an affiliate of USA Today), but I don't expect that to go far.  After thinking about it some, I decided to wait a week.  Two reasons:  1.  Elections are next week and that is going to use up a lot of media bandwidth.  Anything we got would be buried.  2.  Give time for the blog to spread, hopefully virally, but that is probably asking too much.  Anyway, please comment ON THE BLOG itself.  The comments on my Facebook and The Compassionate Friends Facebook page are very helpful, but if the media gets to my blog, they will only see the comments posted there. 

Finally, although it got me nowhere before, I will also contact Facebook.  You never know.  If I can get it into the right hands, something might happen.

I am making no promises.  I am not a mover and a shaker.  I am a retired AF sergeant and a wife and a mother.  I am asking for help now.  If you think this is an issue, whether you personally have been affected by it or not, do something.  Nothing huge, nothing time consuming, but do one thing.  Repost the link.  Send the link to your newspaper or TV station.  Make one phone call.  That's all it really takes--I hope.  I'm not up to standing on street corners with signs or starting a petition or bringing a lawsuit.  It just isn't my style.  Maybe it is the style of someone else who finds out about this though.  Maybe the right person will pick up the fight.

I do want to make very very clear that my blog is not paid.  I do not get anything at all in any way from people visiting my blog.  I have no financial interest at all in this cause or this subject or this blog.  I do not advertise on my blog or allow anyone else to advertise on my blog. 

Thank you all so much for your comments and more importantly for caring about my heartbreak.

Facebook stole my daughter's words

Note:  Updated 11/7/2010 to clarify some points, particularly regarding her posts on other people's pages.

Also:  I grant unlimited permission to reprint all or parts of this posting to any person or organization.  Please credit to Kathleen Yockey, Mother of Michaela Thomas.  My contact information is katylynnsays@gmail.com. 

After Michaela's accident, Facebook became our communication tool of choice.  It just made sense.  It was a way to communicate almost instantly with all of her friends and much of our family.  We set up a separate page to pass information and request prayers (Prayers for Michaela Thomas) and later to share information about a scholarship set up in her name (Michaela Thomas Heart of the RA Award) to include those people who were not her friends on Facebook.  She was particular about her friend list on Facebook.  She thought it was ridiculous to have a 1000 friends, so frequently she would 'unfriend' people who she didn't have a current personal relationship with.  By doing that, she made it very clear who should have access to her site and who should not.  She had about 200 Facebook friends.  She also had 1000s of pictures, pages of notes, and quite a few videos that she had deliberately posted on Facebook to share with those friends.

After she died, some of her friends became worried about what would happen to her Facebook page.  Facebook claims that they will not delete an account for inactivity, but that didn't make us comfortable.  What if they changed their mind?  Would they announce that change?  How would they announce it?  In a message to the account holder (that nobody would ever see)?  It was very important to me and to her young friends that her Facebook be preserved, intact.  So we did some research and found this information (or very similar, I believe it has been reworded slightly to include 'status updates'), regarding "Memorializing" a Facebook page.

When a user passes away, we memorialize their account to protect their privacy. Memorializing an account removes certain sensitive information (e.g., status updates and contact information) and sets privacy so that only confirmed friends can see the profile or locate it in search. The Wall remains so that friends and family can leave posts in remembrance. Memorializing an account also prevents all login access to it.

/help/?faq=15666  

Based on the wording of this statement, we decided the best, safest, thing to do would be to memorialize the page.  Based on the wording of this statement, we believed that the only thing that would change on her page was removing her 'personal identifying information' or what might be considered sensitive information like addresses, phone numbers, personal email accounts, etc.  What we didn't think would happen was that her page would be stripped down to the basics and ALL of HER words would be removed!  These are words she CHOSE to share publically with the 200 people on her friends list.  SHE CHOSE.  This isn't something I wanted made public on her behalf, it is what she had ALREADY made PUBLIC.  How is privacy an issue here?

What do I mean by ALL of her words, exactly?  Let me tell you what Facebook removed in detail so you don't make this same mistake:

1.  They removed her family connections, so she no longer shows up on my page as my daughter with a link.

2.  They removed the Info tab that listed her likes and dislikes, music, movies, books, etc.  (things she CHOSE to share about herself.  Things her friends might like to remember about her.

3.  They removed her final status which was:  "Poor MJ, now that he is no longer living, he is just a legend", did they not think her family and friends would like to look back at the reference to Michael Jackson and smile a bit?  Is there something private or sensitive about that?

4.  They removed ALL of her previous status updates.  So her friends and family can no longer look back at what she said on a particular day and use that to trigger a happy memory of a particular moment in time.

5.  They removed her posts from EVERYONE ELSE's wall, including mine.  Everything she posted on MY WALL for ME to read is gone.  You can no longer see what used to be called "Wall to Wall" and is now called "View Friendship".  The link is there, but it is a one sided conversation with all of her responses and posts to her friend (me in this case) DELETED.

6.  They removed her Notes tab.  All of the little poems she wrote, all of the comments on society that she thought about, all of the rants about college life that she wrote deliberately TO BE READ are gone.  (Interestingly, although they disappeared from her page, if I dug deeply through my own notes, I could drill down to her notes, by clicking 'notes about me' (there was one she wrote about me), and then clicking 'more notes by Michaela Thomas'.  That lasted a few months before FB discovered that hole and plugged it.  But it certainly showed me that her information was still out there (and this information will become important later).)

7.  They removed her Videos.  Every single one of them.  Gone.  Her voice, her laugh, her silly faces.  Gone. Videos again, that she made and took the time to upload, because she wanted to SHARE them.

8.  They removed her friends ability to tag her in a Video or a Note.  So even if I had a copy of the video that FB so viciously deleted (deleted?), there was no way for me to tag her and make it visible to her many friends who would love the opportunity to hear her voice again.

9.  They removed all of her other tabs (except photos).  Things like her music, bumperstickers, and such.  Just things she collected and liked and CHOSE to SHARE.

What did they leave?  Her wall, but with everything important stripped from it.  As much as I like her friends, it isn't them or their words I want to read.  (We made a separate page just for that purpose!) It is the words she wrote that I want to see.  Her photos.  Her profile picture.  The comment under her profile picture "I am So Excited".  And that is about it.  The whole soul of her page has been ripped out. 

This happened over a year ago.  As soon as I saw what they had done, I contacted Facebook and requested they put it back.  I was told no.  That once a page is memorialized, there is no way to restore it.  I begged, I ranted, I complained about the statement and how misleading it was (is).  I calmly suggested that they at least reword the statement making it much clearer so that no other mother has to lose her child's words because she didn't understand the policy.  Nothing has been done.  And quite honestly, I didn't have the strength or energy during the darkness of my early grief to fight the situation.

So why am I bringing it up now?  Well, something strange started happening.  Suddenly, in the upper right hand corner of my "home" page, where the cute little reminders pop up showing you pictures and videos from the past, HER VIDEOS, those videos that FB removed from her page, the ones they couldn't restore to her account...those very same videos started appearing.  Not only that, but I could watch them and share them and her friends could tag themselves in them!!!  But they still weren't on her page.  So wait, are they protecting her privacy or not?  I thought those videos were so sensitive they couldn't be on her page any longer?

But now there is even something newer (and worse) going on.  For the past 24 hours her page has been gone.  Completely gone.  I hear from other people that other "memorialized" pages are also gone.  I am not panicked yet.  I believe this is temporary.  My guess is that FB discovered the error that was causing the videos and pictures of "memorialized" pages to be appearing as reminders and has shut down all the memorialized pages to install some kind of fix.  I hope this is the case.  But it sure would be nice of them to let us know what is going on, wouldn't it?  After all, somebody had to request those pages be memorialized, so they must know who to notify, right?  Why make a grieving parent or sibling suffer through not knowing what is happening to their loved ones page?  Is it being raped further?  Is it gone forever?  I have no idea.

 

What I do know is that I want her pages back.  All of them.  Like they were on the day she died.  And I want Facebook to post a responsible statement about exactly what happens to a Facebook page that is memorialized.  I want to know who those words, pictures and videos belong to now.

Facebook has been lauded all over the national media for their compassionate handling of the accounts of dead persons.  But who is writing these articles?  Facebook?  Has anybody else felt robbed after doing this to their child's page?  Where is the other side of the story?  I even was party to having a newpaper article published praising Facebook for being a valuable communication tool during our grieving (before I memorialized the page).  But, I certainly was NOT treated with compassion when I contacted them about what they did to my daughter's page. 

Yes, perhaps the person's identifying information (addresses, email, phone number) should be removed to protect the privacy of the surviving family.  Perhaps the 'reminders' to get in contact with them or view their old videos shouldn't pop up on an unsuspecting mourners 'home' page.  But for those of us who want to visit her page and see her words and hear her voice by our own CHOICE and HERS, why on earth would Facebook take that away?

Please share this information with anyone you know who is in my situation.  Please pass this information on, so no one else gets hurt by Facebook's so called 'privacy' policy regarding memorialization.  Don't let anyone else lose their child's (friend's, lover's, grandchild's, spouse's) precious words because of an inflexible and misunderstood policy.

Blessings

Yesterday I was interviewed by a friend doing a study on Post Traumatic Stress Syndrome.  It was a more difficult interview than I expected it to be and although immediately afterwards, I thought I had handled it ok, I really didn't.  Remembering Michaela and talking about her is one thing; it is a wonderful thing.  Remembering and discussing that terrible time in the hospital and the emotions that surrounded her death is not something I want to do very often.  It left me sleepless and a bit down.

But I remembered when I was talking to her that even very early on, I was able to recognize some blessings that were given to us to ease our pain.  I was able to recognize that I wasn't coping on my own and I didn't need to.  That God was going to support me both directly and through the amazing people he has put in my life to help me.  I remembered that I had written about some of these blessings, but it took me awhile to find where I had written it.  This is what I wrote on July 1, 2009 in a note to her friends and family via FaceBook:

I am the most blessed woman on earth. God gave me one of his angels to watch over and protect for 21 years. Although I selfishly want many many more years to share with her on this earth, I can't be angry at God for wanting her back. She was only lent to this earth and we were the lucky ones whose lives she touched.

Michaela was a very discerning young woman and if she shared any part of herself with you it is because you are something special too. She had no time for the vain or the frivolous or those who couldn't laugh and weren't good in their hearts. Bless all of you who loved her. You are a better person than you know.

God took her in the most merciful way he could. He knew this was going to be a crushing blow for those of us she is leaving behind for now. She was knocked out instantly in the crash and felt no pain at any time, but he left her body completely intact for her to give the gift she so adamantly believed in...the gift of organ donation.

He also left her beautiful and breathing so that her family and friends could gather to comfort ourselves in the presence of her body. To touch and hold, kiss and cry over, and say goodbye to her. And then when our goodbyes were said and we were ready in our hearts, we said a short prayer and asked God to be merciful and take her quickly and without us having to make any heart rending decisions about her condition. Within 5 minutes of our prayer, she stopped breathing on her own and we were able to have her legally pronounced dead so that she could move on to her next gift and start preparing her body to provide miracles for as many people as possible.

They have assured us that her body is perfect for donation and that she will save the lives of many and improve the lives of many more. Thank you God for all of these blessings.

I was not always able to maintain that positive attitude, but I have never had to handle this alone.  I have my faith, my family, and my friends to sustain me. There have been many, many blessings since I wrote those words.  And I will write of them along the way, but I did want to make sure these early thoughts were preserved someplace more permanent than Facebook.

Fog

This isn't what I intended to write about tonight, but as often happens, something I encountered during the day has hung with me all day long.  I read a Facebook post by the Compassionate Friends Network.  A member asked about something he called 'Simple Memory Loss' in which he (or she) has entire conversations and interactions that later on he (or she) can't remember.  The writer wanted to know if this is normal.  Judging by the responses by other members, this is extremely 'normal' and can last for quite some time.  Longer than I thought.  Thank goodness.  I thought I was going crazy.

Honestly, I was relieved to read their responses.  Early on I wandered through my days in a fog of forgetfulness and indirection.  I would have conversations with friends setting up future plans and forget about them entirely.  I would walk down the hall and forget where I was going.  I would repeat the same conversations with my husband several nights in a row, sometimes remembering that I had asked him about something, but not remembering what his reply had been.  I am not in that fog any more, but I am not 'recovered' no matter how much I try to tell myself I am.

The primary result of the early 'fog' (it is actually called 'grief fog') was that I tended to become much less social than I had been before.  After a few very embarrassing instances of not remembering people's names, children, or something important they had told me, it just seemed easier (and less embarrassing) to isolate myself or socialize in only the most controlled situations.  One on one encounters I could usually manage.  Large groups were terrifying.  There were some situations where I couldn't avoid large gatherings, so I coped the best I could by keeping people I knew well near me, sitting with my back to a wall as far from the 'action' as I could, or simply leaving for awhile to take a long walk alone or with a single person.  I see now that my husband protected me then as he does now.  He used to joke about me being the social person and him being socially inept,  but now he takes care of our social responsibilities for me.  In a group, he is out talking to people, working the room (so to speak), so I don't have to. 

It has been almost 16 months.  Unlike many on the grief network,  I cannot (and will not) count it down to years, months, days, and hours.  I am not who I was before.  I never will be.  I no longer walk around in a continuous heavy fog, but rather like a fall morning where the fog rises up in low lying areas unexpectedly causing me to slow down and take care.  Stumbling along with my hands in front of me, taking tentative steps, trying to be safe.  I have been pushing myself to 'get better', to function normally, to get back to the top of my game...and beating myself up when I fail.  And I do fail.  I have those foggy periods when I just can't function like I used to.  Multi-tasking is impossible.  I find that I make a lot of mistakes towards the end of something I am working on because my mind has moved on to the next thing assuming that I can finish the current project on auto-pilot.  But I can't.  I make silly mistakes. 

Once I got a rental car for Bill for a trip to visit his mom; but I reserved it for the wrong year.  I made a car reservation for our vacation last weekend to North Carolina, but when we got there, they had no reservation for us and no cars either.  A problem that could have ruined our trip.  Travel plans are something I used to be very, very good at.  The day after the long weekend, I must have been very tired because I made several serious errors at work.  I knew I wasn't functioning at 100%, so I tried to work slowly, double checking everything, but I still made mistakes.  And then the fog lifted, and the rest of the week I was ok.  Go figure. 

In many ways, this spotty fog is as bad or worse than the initial fog.  Early on it was expected and easily tolerated by everyone around me and even by me, myself.  People had nearly unlimited patience with me.  Now, both me and the people around me (friends and coworkers) expect more from me.  I will go days, maybe weeks, appearing to be perfectly capable and then I will stumble and make a series of dumb mistakes.  I still prefer to protect my environment, keeping mostly to myself or one on one with close friends (and having someone double check my important work), but my friends seem to expect me to be who I used to be...probably because sometimes I am.  Sometimes I can be that person and all appears normal.  So when I can't, it appears to be something it isn't.  Anti-social, uncaring, selfish. 

I remind myself that this is a process.  It is not a series of steps, but rather like diet where there will be gains and losses along the way.  I will come out of the fog.  I will not be the same person who walked into the fog, but God willing, I will be a better person than I was before.

my crate

I have some very precious items.  I keep them in a crate, locked up.  I take the crate with me everywhere I go, but I only open it up when I am alone and have time to admire its contents. 

The items in the crate are brilliant, multifaceted, globes that sparkle and shine and send shards of color when the light strikes them just right.  They are invaluable.  More valuable than crystal.  More valuable than diamonds.  They are my memories.  Each of the globes belongs to someone who used to be in my life, but no longer is for one reason or another (death, geography, misunderstandings).  Some of the globes are bigger than others.  One of the globes is like the sun to the earth proportionately to the others.  But each of them is important.

I keep them in a crate, not a vault.  Sometimes when I am walking along with my crate, the sun will catch the brilliance of one of the globes through a crack and send back a bright shard of memory to me unexpectedly.  These small bits of glorious light are like little gifts from my crate. 

I really wasn't aware of my crate until Michaela died.  Perhaps I didn't keep it locked back then.  Perhaps I didn't feel the need to carry it everywhere I went, but was content to keep it nearby in my home.  Perhaps I brought it with me, but treated it carelessly.  I really don't know.  I know where it is now, all the time, and I guard it ferociously.

It is no good to have a priceless item, if every now and then you can't take it out and admire it.    When I haven't admired it for awhile, I become more and more aware of my crate every day.  I feel the need, it builds in me over time, to unlock my crate and pull out that indescribable globe.  To let it shine in its full brilliance.  To hold it up to the sun and let it overwhelm me.  It seems to shimmer and glow more often through the cracks of the crate in the car seat next to me, in the sunset over the river, in the music in my ears and the smells in my nose.  I am reminded of my crate in random phrases and foods I taste, until I allow myself the opportunity to revel in its contents.

When it is time, when I am able, I like to take it out and hold it in my hands.  To turn it round and round and lose myself in the enormity of what was.  I have to make time to do this. Time alone.  Time that won't stop life, because life doesn't stop at my whim. 

I have a vault as well.  In it lies what might have been.  That is a room that I cannot visit often.  The pain in that room is just too great.  When I do visit the vault there are repercussions.  It isn't healthy and it isn't pretty.  People who know me well know the difference between the sweet sadness I experience when I open the crate and the devastation I feel when I visit the vault.  I know I can't ignore the vault.  But I can choose not to dwell in it and live in the brilliance of the contents of the crate and the even greater brilliance of those I love who are still by my side.

visits in the night

I have vivid and crazy dreams.  I always have had.  When I tell people about my dreams, I get very strange reactions.  I guess I used to think everyone dreamed like I do and remembered them like I do.  My dreams are often like a Steven Spielberg film; lots of action, adventure, danger and excitement.  Some of my dreams are so real that I talk out loud or even get out of bed (I don't think I have ever sleepwalked beyond standing up), once I attacked my husband, kicking and hitting.  Some of my dreams are unmentionable.  Some of my dreams are extremely violent and disturbing.  I have never particularly tried to assign any meaning to my dreams...mostly they are just a quick, funny story in the morning that makes my husband shake his head and laugh at me. 

Michaela shared my dream personality and often talked in her sleep.  She would tell me excitedly about the amazing dream she had in the night.  David apparently does not (he claims not to remember many dreams, but as a child he both talked and walked in his sleep).  I ponder our waking personalities and wonder why that is so.  What causes us to dream (or not) the way we do?

I believe that I am a very controlled (and controlling) person when I am awake.  I am closed to the world or worlds around me.  I am not atuned of the miracles of daily living that I know in my heart are all around me (although I am certainly more so than I used to be).  I think my mind or my heart opens up when I am sleeping and the world opens up to me.  Miracles can happen.  I can be aware and accepting of things that I would miss entirely when I am awake.  I think most of the time my dreams are just an amusement park thrill ride that my more stoic waking personality won't let me ride.

So, when we dream about the dead, is it a visitation or simply a dream?  My argument is that it could be either.  I believe in my more open state of sleep, I am more able to  recieve a 'visit' should someone want to talk to me.  I only have one case where I can honestly say I believe, for certain, that I was visited.  There have been other cases that could have been visits or may have just been a dream manifestation of what was happening in my life (i.e. my previous post about "my dream").  I may know for sure later; hindsight, it seems, is in fact 20/20. 

I have told this story before on Facebook, so if you already heard it, sorry...I expect several of my past notes may make blogs eventually as I don't trust the future reliablity of FB.  Anyway, I don't think my blog is complete without this story.  Michaela was in a car accident on June 28, 2009.  Her soul left her body sometime between then and midnight on July 1, 2009.  Several months later, I was still in deep, deep grief and I somehow stumbled upon an old "note" I had written on Facebook.  It said: 

My grampa came to me in a dream last night. Not a crazy dream or anything. I don’t remember what I was dreaming, nothing to do with grampa. But then there he was there standing outside a door….and I told whoever was in the dream, hold on a minute, my grampa is here. And he came in the door and he looked great. Something between when I was 18 and the end. And he just wanted a hug. So he came in the door and I hugged him and I held him. Then my memory is shaky...I think he told me he had to go...regardless then I woke up. I was so disappointed to wake up. I was so smiling and happy and also actually crying, tears running down my face. There was a noise in the house that I had to find and I was so mad at that noise for waking me up. When I got back in bed I didn’t want to go to sleep, I just wanted to replay that dream over and over in my head so I wouldn’t forget it. He has never come to my dreams before. I finally fell asleep after savoring that memory for an hour or so and suffering later for the lack of sleep. But I hope it happens again. It was so real. Not like a haunting or anything crazy like that….just a dream that my grampa thought I needed a hug. My grampa was amazing and I love him so much.



Michaela and David with my Grampa

 I read that over and over.  I took a lot of comfort from it.  My grandfather was a very special part of my life.  I always felt like he loved me the most.  But then I noticed the date.  I posted this 'note' on March 2, 2009.  I dreamed this on the night of Michaela's birthday.  My memory of that night interpreted what he said as "I'm so sorry, I have to go", but now I wonder if it might not have been "I'm so sorry, but she has to go".  That wouldn't have made any sense to my mind at that time, so my mind would have replayed it in a way that made sense to me.  Our minds are incredibly fickle at accurately recording what we see, let alone our dreams.  Or perhaps he said it as I remember it.  Regardless, isn't it incredible that he would come to me on the date of the birth of my daughter...just to give me a hug?

Lose, Loss, Lost

 First a poem by my friend Linsey Johnson 



 A mothers lament

Where have you gone Michaela

Why is the light so dim

The pain in my heart so constant

The child I saw today

Wasn’t you but my heart skipped a beat

Girls laughing and I heard your voice

The body was yours

But you were gone

Where is the happiness we were to share

Where is the woman you were growing into

The babies we were going to raise

So you could understand how deep my love for you was

We can’t just sit together and enjoy the simple pleasures

I just sit alone and miss you

Time heals all wounds

But I fear it cannot heal this

Nothing could, only a kiss or a hug from you

Sometimes I wish the pain would disappear

But it could only happen if I never knew you

And that I could not bear

Thank you for showing me the depth of my love





Linsey wrote this poem after reading one of my earlier blogs.  It was the one in which I talked about our society's aversion to using the words Death, Died, and Dying.  I said that I don't like the words "I lost my daughter" because it implies carelessness.  The very next day when I was speaking to someone about this poem I said that Linsey had also lost a child.

What?  I said what?  Wait, now I'm a hypocrit!  Oh no!  So I had to put some more thought into my aversion to those words.  After a few days of thinking about it, I decided I am no longer opposed to them.  I probably won't use them much in the first person, not because of the implication of carelessness, but because they are not significant enough.  It doesn't say enough.  It is too soft and fuzzy.  I would have to say I lost my daughter, my future, my dreams, my hope, my pride, my stability, my mind, my heart (and the list would go on forever).  I prefer the straight forward statement that my daughter died.  Harder to say, harder to hear, but it evokes a harsh reality in both the speaker and the listener that more closely matches my feelings in the matter.

Some Very Important People





Still, I'm willing to concede that Loss is an appropriate word to substitute for death.  It is a loss.  An incomprehensible loss.  It is not misplaced, it is lost forever and ever.  It can't even be replaced, ever.  There is a much broader meaning for the words Lose, Loss and Lost than simple careless misplacing.  There is 'she lost everything in a fire', or 'she lost her mind', neither of which are self-induced losses.  Neither of which match the loss, through death, of a beloved person (or pet) either.  But the English language is insufficient.  There aren't words for everything so we just have to make due. 

Kindness and miracles

http://www.galactanet.com/oneoff/theegg_mod.html

You have to read the story at the link before you go on....ok, I'm waiting....take your time......ok, done? 



Experiencing Earth

 What an interesting concept.  I've heard a lot of different philosophies in my life including the one where you are the only real person and everyone else is just your imagination.  But this is a new twist.  I don't know anything about the person who wrote this nor do I know when it was written or how long it has been floating around in cyberspace.  It is the first time I have read it.  Don't get me wrong here, I'm not saying I believe it as a religious story or anything like that.  It makes a great fable.  Compelling to think about once you get your mind around it.  What strikes me about it is this....what kind of world would it be if everyone living absolutely believed this story to be true?  I believe the world would be filled with kindness and consideration.  Hate, war, violence...they would all have to end, right?  Are you going to steal from yourself?  Kill yourself?  Torture yourself?  I do believe we are all connected in some unfathomable way; the living and the dead and perhaps some others too.  So why do we feel the need to hurt one another? 



Freedom

 Of course, when the subject of death comes up, my mind goes straight to Michaela.  This story made me think of some of the blessings that were bestowed upon her through death.  Again, don't misunderstand me, young death is a tragedy.  The death of someone like Michaela is a tragedy.  But a tragedy for whom?  Certainly for me, her family, her friends, her loves, and perhaps the world as a whole.  But is it a tragedy for her?  She is forever young.  Forever healthy and beautiful.  She never had to wrestle with adult life.  Sure, her life wasn't perfect, but she lived in the protected world of the young.  No hunger, no worrying about how to make rent, no desperately looking for a job to put food on the table.  She never had to cope the death of her own loved ones.  She never had to live with herself after making major bad decisions; her life hadn't developed far enough that any decision she made was irrevocable.  She will be remembered as perfect by her friends and family.  Although we try to keep it real and joke about her little foibles, she was too young to have hurt anyone beyond repair and young enough to have kept her mind open because the world hadn't beat up on her belief system.



Life and Death Coexisting

 And most importantly, she was still young enough for miracles.  Not the big ones.  Not the crying Madonna's or healing of the ill.  The daily ones.  She was almost too old.  Almost too mature, but it still happened for her.  She was still experiencing many things for the first time and each time you experience the world for the first time, don't you feel the miracle of it?  Imagine a baby, eyes just clearing up, focusing on color, hearing sounds, feeling textures...for that baby every single new thing is another miracle.  Wow.  Being a baby must have been super-cool.  How could you get bored with all of this new stuff going on?  And then we get used to things and the real life miracles, just become 'normal'.  Flowers blooming in Spring.  Seriously.  How does that happen?  Can you explain it?  I certainly can't.  Some scientist can give you some technical reasons why it works, but that only takes it so far.  We say we understand because we have been taught the right words to explain it and we pretend it makes perfect sense.  But it doesn't. 



My Children in all of their glory

 You look me in the eye and tell me a sperm and an egg bumped into each other and that caused my son and my daughter to exist in all of their glory and I will tell you that you are full of crap.  My children are miracles.  So are yours.  So are you for that matter.  We can explain cells and DNA and all of that...but where does that all come from?  And more importantly where does the essence, the soul, of a person come from?  That isn't just electrons bumping into each other.  Sorry.  It is a miracle.  My teachers at technial school in the AF, when they didn't want to explain something (or more likely couldn't explain) like radar theory, called it PFM (Pure Fucking Magic).  Isn't that just a profane way of saying a miracle?    Those flowers are miracles.  The trees knowing when to drop thier leaves for winter and yet getting them back every spring--miracle.  Wind, waves, stars, puppies, eyelashes, toenails, flower petals, lady bugs and fungus...all miracles.

sucker punches

My daughter died.  One morning she was a normal happy, laughing, frustrated 21 year old.  She was excited about the apartment she was about to move into.  She was worried about signing up for her last classes for graduate school.  She was worried about if she needed to sign up for the college offered medical insurance (Are you sure, mom?  I'm about to click no).   She didn't want eggs and bacon only cereal (strange).  She was worried about her new job, her new school, her relationship, her personality, her friends, her future, her being.  She slept late, checked email, facebook and post secret, registered for classes, ate cereal, took a shower and left for the beach with a bye, love you, can't wait to see your pictures.  

And I never heard her voice again.  I saw her.  I held her.  I talked to her.  I prayed over her.  I rubbed her feet.  I held her hand.  I kissed her face.  I stroked her hair.  In the end, I prayed for her to stop breathing on her own or God's will be done, whatever was the right thing, because I knew she wasn't in that body any more or if she was, she was just holding on for me; waiting for me to let her go.  No matter what, the doctor said, Michaela was gone.  Yes, there are miracles and Lord knows we prayed for one, but I have to admit that I didn't want her to wake up irrepairably damaged with no quality of life whatsoever.  If she could be happy, in whatever state she came back, so be it.  If she couldn't walk, talk, or function normally, that would be ok if she was happy.  But if she lost her incredible intelligence and wit, then she wouldn't be Michaela anymore, right?   She had already had an amazing life; why be afraid of what is next for her?

I didn't pray alone.  There was a force of us.  Her dad spoke the words out loud.  I don't know what everyone else said in their hearts.  My heart spoke his words.  We all held hands.  We prayed together.  And when we came out of the room we were in, two minutes later, she was gone.  There were legal formalities, but she was gone at that instant.  I had left her with two of my friends.  It was my wish that she have at least two people with her all the time so she would never be alone.  When I came out of that room she was alone.  I was furious.  I thought they had left her, selfishly.  With 20 people in the waiting room that didn't seem likely, but I was confused.  As it turned out, the nurse had sent them out.  While we were praying, she stopped breathing.  They sent them out so they could do the test to declare her legally dead.

It has been 15 months.  Fifteen terrible months.  Up and Down.  Back and Forth.  Ok and not ok.  Life goes on.  That sucks but it is the truth.  Life and death go on no matter how much I want to crawl in a hole and stop.  Since then both of my husband's parents have died.  Why is it so hard for us to say those words?  Dead, death, died.  They died.  Alternatively, they passed away.  That seems to work for older people, but doesn't seem to fit a quick, young death.  You will never hear me say I lost my daughter.  I absolutely did not lose her.  I hate that expression.  It implies carelessness.  You lose keys, not children.  And besides, I know she will turn up again...neither she nor I are lost...we just can't see each other right now or perhaps I just can't see her. 

When my husband's father passed on Thanksgiving, it was more than I could cope with.  I wasn't there to help him deal with his grief in any way.  I was still a complete mess.  This last month his mother passed and I was honored to be at her death bed.  Death no longer scares me.  I had the words for my prayers as Dixie drew her last breaths.  I'm in no hurry for death for myself or my loved ones, but I no longer doubt what the future holds.  I grieve for my daughter constantly, but I am more attuned to the beauty of this world than I have ever been in my life.  I have been constantly searching for a balance between what I want and what I have to do to get it.   

Most days I just live my life like anyone else.  Most days I am just Katy,not the woman whose daughter died.  Most days I work, eat, rest, and worry, just like everyone else.  Most days I drive my car, hate my job, listen to music, plan trips, and shop, just like everyone else.  Today I got my teeth cleaned.  Just like everyone else.  But I'm not just like everyone else.  I have a hole in my heart as I do these things.  I breath a little shallower.  Some days I don't notice so much.  When I am overwhelmed with the rest of life, I don't notice so much.  But it is like an overdue loan.  Eventually I have to pay the price for surviving.  Eventually all of the good days will cave in to a day of mourning, of grieving.  I will have to give in to the inevitable.  Each time I think I know the signs of impending gloom, it changes.  I suppose it will change for years.  Until someday being without her is the norm and although I will never stop missing her, the person I become will be able to cope with the loss.

I wonder how they managed in the 'old days' when so many children died.  Was that just the norm?  Did mother's grieve briefly and then get on with life or did they grieve on and on and just hide it from society.  Were they too busy doing what needed to get done to ensure the survival of the rest of their family to dwell on the one, two or more that were missing?

Today was a day of sucker punches.  It was the first day in awhile that I wasn't overwhelmed with the here and now.  And today, I missed my daughter at the silliest times.  At Walmart.  In the car.  At home talking about a trip to NYC.  Time after time today I was reminded that although I know she is in the best possible hands, she isn't here with me.  I will never, in this life, see her again.  And it is like a sucker punch to the gut every single time.  They come less often than they did in the very beginning, but they hurt no less.

I love you Michaela and I miss you.