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Sunday, January 17, 2010

Anniversary Schmanniversary

My mom, 1989, just before she really started getting sick.

Ok, so that was a way disrespectful title to give the post I think I'm about to write.  And I say "I think" because I have every intention of writing about it, but I may falter and give up along the way.

I have in many posts spoken of my mom.  I've stated that she was a wonderful, selfless, giving person.  I've admitted that I gave her a ton of worry and heartache in my raising.  I've also come to understand how much I took her for granted and under appreciated her while she was alive.  She wasn't perfect.  Far from it.  But she is one person of whom I can honestly say this:  In all of her imperfections, she always had the best of intentions and the best interests of her loved ones at heart.  I am not gonna talk about all of this again today.

This date, the anniversary of her death, is also the anniversary of the hardest decision that my family and I ever had to make.  See, Mom didn't just die.  There wasn't any sudden or dramatic exit from this earthly plane for her.  It was a long and tortuous journey for her and for us.

Mom had severe lung disease.  She had undergone a major thoracic surgery in the mid 90's in a then experimental procedure.  She had had her ups and downs.  Times when she lacked the breath or the energy to do as much as eat.  Times when she was feeling great and could be active.  Many times, out of a sense of obligation or duty (mostly to her mom or eldest brother) she pushed herself to her physical limits.  Over doing it for a day cost her physically in weeks of  recovery time.  She never let anyone but me and my dad see that though.

I carry a lot of guilt because I know that some of the crappy decisions I had made during the 90's really took a toll on her. The emotional/mental stress always showed up as damage to her physical health.  Sometimes I wonder how many years I might have shaved off her life with my selfishness and immaturity.  I don't say that in a self pitying, fishing for consolation kinda way.  I mean that isht.  I really think that my brother and I had a lot to do with her decline.  I'm still trying to learn to live with that.

But I digress...

After years of treatment, surgery, rehabilitation, remissions and exacerbations, in 2003, her pulmonologist told her that if she continued on as she was, she had about 18 months to 2 years before she died.  However, if she had a lung transplant, she was looking at 5 to 10 more years, with the average being 7 years.  Of course there was the "fine print" as she liked to call it.  There was a chance she could die on the table.  The chance she would reject the organs.  The chance she would get a post op infection.  The fact that she was trading lung disease for life long immune suppression.  All sorts of stuff could go wrong.  But to her, all of the risks were worth the reward of not having to struggle and fight for every breath anymore.  Even if it was just for a short time.

She was on the "active" transplant list for a very short time.  She had moved from her beloved Mississippi back to Illinois to be within a 2 hour drive of BarnesJewish Hospital in St. Louis.  She was preparing herself mentally, emotionally, physically and spiritually for whatever was to come.  She was ready for the wait, steeling herself for the disappointment, and still struggling to breathe.

Then the call came.  We were getting ready for church.  The phone rang.  I answered.  "May I speak to Eunice please, I'm calling for the transplant team at Barnes."  She got off the phone.  "Well, Cliff... we need to go to St. Louis."

Now, at that point, the surgery wasn't a definite.  They had a donor, but they wouldn't know if the lungs were suitable for transplant until they started recovering the organs. Still, she had to go through pre op prep.  She didn't want me to "drag the baby out for nothing," so Eli (then 1 year old) and I were going to go to church, then home to wait.  At the time, I was going to school (yes, I am the eternal student).  It was January 11, 2004.  Semester started the next day.  The last words my mother and I exchanged are burned in my brain forever.  "Mom, I love you so very much." "I love you too, Sissy... You have school tomorrow.  Don't worry about me."  Then she and Dad walked out the door.

So here is where my intentions and my strength of spirit are coming to a parting of the ways.  I intended to detail the long, hellish, surreal week that followed.  I just can't.  Maybe next year.  The synopsis of that week is disappointment, hope, loss of hope, desperate prayer, denial, anger, disbelief, renewed hope, stolen hope, more anger, guilt, more prayer and bargaining, despair, unspeakable sadness, agonizing heartbreaking pain and finally, resignation.  After a week on machines, never regaining consciousness, never taking that unburdened, deep and satisfying breath, my mom started into what I now know was multisystem organ failure.   She was shutting down.  She was no longer inhabiting her physical shell.

During all of hell week, at least one of us had been in the family waiting area at all times.  Until the morning of January 17.  Dad had gone to get an hour or two of sleep.  My Aunt Beckie, Dad's sister, was sitting in the waiting room in case anything happened.  She had to pee.  While she was in the bathroom, Mom went into cardiac arrest.  Without someone there to tell them to let her go, they resuscitated her.  Her heart started again.

When I arrived at the hospital, Dad told me and my brother what had happened, and he told us it was time to make a decision.  While none of us wanted Mom to suffer, we all felt like we were betraying her by admitting she wasn't going to get better.  We had all been carrying the guilt of "thinking the worst" for days by that time. But it was clear.  It was time to let her go. It was time to let her rest.

Every one went in 2 or 3 at a time and said good bye.  Then Dad, my brother and I went in.  We kissed her.  Told her we loved her and that it was ok to let go. They gave her morphine and ativan to ease the transition.  I couldn't watch them turn off the machines.  So I stood outside her room while the machines were turned off.  After about 5 minutes, Dad came out and told me she had gone peacefully.  We stayed with her a few more minutes before we went back out to the waiting room.

The next few days are a blur.  The funeral and visitation were nightmarish.  I remember feeling like someone was trying to pull my heart out through my chest.  I remember that I didn't know how I could hurt so bad and not go crazy or die.

For those of you who had the stomach to read all of this, I thank you.  I needed to tell it.  I don't know why.  Maybe to see how far I've come in the healing. Maybe to honor her memory. Maybe to exorcise some demons.

In years to come, I hope the memory of that week continues to fade.  But I hope the flame of my mother's spirit continues to burn inside of me and all of those who knew and loved her.

Rest in peace, Mommy.  I still love you so very, very much.

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Blogger littlepretendnurse said...

Thanks for sharing Ms. Amy. I remember some of those same feelings (my experience was a little easier than yours, but it is never easy ya know).

Your Mom's memory will live forever if you keep it alive.

January 19, 2010 at 11:30 AM  

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