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Posts Tagged ‘Pleasanton’

Most people I know hate going to the dentist. Roy and I are no exception, but we both do it when we have to and can pay some of the hefty costs, because we’d like to have teeth as opposed to lose them all. However, we’ve not had good luck with our dentist since we moved up to Placerville in the Sierra foothills from Pleasanton in the San Francisco area.

Now, we’re fortunate in that we have dental insurance so our costs are generally fairly low, except for certain issues we both have with our own particular health that cause some of the copays to sometimes be a bit high. That’s ok. We generally will budget it in and work it out, because, like I say, we’d rather have teeth than the alternative.

Here’s a new one for us, particularly with the current medical insurance and health care climate the way it is. I had to cancel a dentist appointment the other day because of a conflict in my schedule. I had moved it previously … once when I was out of town at the last minute and once when our truck transmission went out and I couldn’t pay for the cleaning copay (~$430 for a “deep cleaning”). Anyway, I had to cancel again, this time due to a time and date conflict. I was going to reschedule as soon as I knew my calendar as I had the money budgeted in, but they pre-empted that and essentially “fired me” as a patient, because I “don’t respect their time”. LOL … ok … I contacted them a week and a half in advance to let them know so that they had plenty of time to schedule someone else. I suppose their dental business must be *BOOMING* right now … or not.

Anyway, they sent me a letter in the mail. They couldn’t even tell me when I cancelled this appointment … and they told my dental insurance carrier without my knowledge to change me “immediately” … because I don’t “respect them” … so the carrier DID change me … without contacting me, may I add … to a new provider … IN PLEASANTON, CA. Uhhhh … no … that won’t work. That is approximately 150 miles away from where I currently live. So I put in an online change request for a new provider in Placerville … and was advised that it won’t be effective until MARCH. Uhhhhh … no … wrong again, Slick. What am I supposed to do if there’s an emergency *NOW* … particularly since *I* am not the one that made the incorrect change in providers and I was not contacted directly about this? Expecting me to go 150 miles away to an area I do not live is completely unacceptable, don’t you think?

Like I’ve said before, Hollywood can’t make this stuff up.

This is laughable … and pathetic … all at the same time.

Only Roy and I can be “fired” by the dentist.

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easter2

 

I’m setting this up to post to my blog in advance so that while I am on my cruise, it will post on May 3, 2013 … right on schedule. 

What’s ironic about the day is … I am scheduled to be in Maui then, snorkeling.  My 2nd son (my deceased son), Keegan, loved to swim.  Keegan loved to snorkel.  We did that on his Make-A-Wish trip with Disney Cruises in 2001.  Additionally, whenever he used to order fish at a restaurant, he would loudly say “fishy fishy” (you had to be there to get it, I suppose).  It all started because once when he was quite young, he had stated that’s what he wanted for dinner and it came out louder than he’d intended, causing the entire restaurant to laugh.  So he kept it up.  That means that now … whenever Roy and I snorkel … when we see our first fish … we have to bob up, look at the other, and yell “fishy fishy” over the waves to the other.  Like I said … you had to be there to get it.  It makes us laugh anyway.

In any event, I’m posting this on May 3, 2013.  Keegan was diagnosed with Cystic Fibrosis on May 3, 1984, 29 years ago, when he was just barely 2 months old.  I originally wrote this in 2001, right after my second child, Keegan, died, but it’s appropriate to me to post it now, at least in my not-so-humble opinion, as it gives a bit more of my history, my story, my background, and the challenges my family and I have encountered over the years.

I only wish that Roy could have met Keegan face-to-face in person.  He knows him spiritually … but he never got to meet him in real life.  I am forever grateful, however, that Roy honors the memory of my son with me and allows me to continue to grieve his loss or celebrate his life/spirit whenever I need to do so.  In my opinion, that shows a true partner, a true soul-mate, and a true man.

Keegan … we miss you still and always will.

So … with that … carry on …

*~*~*

2001

“The nurses at Stanford University Medical Center see a lot of transplant patients, but they will never forget the kid with the green hair.”  Dolores Fox Ciardelli in an article that was written for a small local weekly newspaper called the “Pleasanton Pathways” wrote this.  When Keegan was born 17 years ago on February 29, 1984 (yes, Leap Day), I never ever thought this would be something closely associated to my family.  At the time he was born, I didn’t even know what Cystic Fibrosis was, let alone worry about transplant.  Transplants were those things they tried and experimented with but were only for those “other people” that had illness in their family.  I didn’t have that.  My family had always been healthy.  And green hair?  My family wasn’t into odd colored hair.

It was a long time before I had to worry about any of this.  People think now that just because Keegan received a double lung transplant at the ripe old age of 16 means that his health had been crummy since he was a baby.  He had a rough start to his life, but once he was diagnosed, things were great since we knew the problem, and the main reason that he had been diagnosed with CF very young was due to the perceptiveness of a young and competent pediatrician just out of training that had done rotation with a CF team as an intern and resident.  Let me back up though.

Keegan was born on 02-29-84.  It was an emergency cesarean because of the size of his head to my pelvis.  He was a big and well-formed baby with good weight (8-lbs. 11 oz). I have another son (Logan) that is 15½ months older than him, so I had quit work for a while to stay home with my two babies.  I was 29, almost 30.  Things were great.  The c-section, although to me seemingly awful, really was flawless. He had huge brown eyes and lots of straight blonde hair.  He was angry from the minute they pulled him out, especially since they had to suction his lungs, since he’d sucked in amniotic fluid, which is common, apparently, with c-sections.  He had minor issues at birth and went home seemingly healthy to the doctors. 

However, to me, something seemed “wrong”.  I couldn’t put my finger on it, but Keegan didn’t seem to eat properly.  Logan had always eaten like a horse and had gained weight magnificently on my breast milk.  Keegan, on the other hand, would suck a very short time and then scream and scrunch up.  His bowels seemed ok but a bit sticky.  Oh well.  It cleared, and then it seemed like any newborn on breast milk … but something still seemed wrong to me.  He didn’t eat right.  I was told that I was just being a nervous mother and not remembering how newborns could be.  This didn’t seem right to me.  Logan is only 15½ months older than he is.  I remembered too well how much Logan ate and how he had thrived on my milk.  Keegan did not.  Oh well.  He’s a different individual.  Perhaps I just need to learn his body needs and personality.

Things seemed ok when we got home, but he still didn’t eat right.  His diapers got runnier and runnier and looked like milk was just on a direct pipe from his mouth to his diaper.  I went to his 2-week-old check-up.  He’d gained no weight.  The doctor looked a bit concerned but told me that this happened on occasion and that perhaps my milk wasn’t good enough.  I listened, but this didn’t seem right to me either.  Logan was 9½ lbs. at birth.  He was 30 lbs. at 1 year.  This was on my breast milk.  How could it be that much different?   He wrote down “failure to thrive”.  Go home and try to feed him more often.  I fed.  He vomited it back up. Ok, well, we’ll try to see how much milk he takes in.  They measured.  It was a lot.  Go home.  Feed him slower but often.  He wouldn’t eat, or he’d throw up.  Ok, then, we’ll see if it seems rich enough.  It did.  Maybe it’s too rich.  It wasn’t.  Ok, then, we’ll try additives and formula.  No good.  “Failure to thrive.”

About two days before Easter, he came down with a really awful cold that his father, his brother, and I all had gotten.  We were all coughing.  So was Keegan.  No big deal.  This was a respiratory thing.  It’ll go away.  Easter.  He was feverish and sick.  I called the doctor.  I met him at his office.  They prescribed some oral antibiotics.  Easter Sunday.

We were giving him the antibiotics.  The rest of us were improving.  He wasn’t.  He was getting worse.  May 3, 1984.  I brought him to the doctor.  He sent us to the hospital for tests.  “Don’t worry.  It’ll be ok.  We just need to see what’s going on.”

May 3, 1984.  His dad came to the hospital after work.  I had gone there from the doctor’s office.  My mother was home babysitting Logan while I went to the doctor with Keegan.  Logan was sick.  My sister came to help out, and my mom came to see what was going on at the hospital.  The pediatrician was there telling me that they would be running routine tests in the morning.  It was a hot day – unseasonably hot for May.  We were at John Muir Memorial Hospital in Walnut Creek, CA.  Keegan’s dad, Mark, picked him up and gave him a kiss.  He said “God, you’re a sweaty boy.  You are really salty.”  I saw a look pass over the doctor’s face that I knew wasn’t good, but I didn’t know what it meant.  I’ve since learned not to like that look when I see it.

Anyway, he mentioned a bunch of tests they wanted to run.  I don’t recall what most of them were other than they were mundane, and I recognized them, and they didn’t seem like a big deal.  In the middle of all the things he mentioned, he also stated “cystic fibrosis”.  “What the heck is that???”  “Don’t worry about it.  It’s probably nothing.  We just want to rule everything out.  I wouldn’t bother checking medical journals.  They won’t tell you much.”

I spent the night in a chair in the hospital by my baby’s side.  His dad went home to take care of Logan and to call his other grandmother to come watch him, since I’d be at Muir with Keegan.  She came.  He went to work the next morning.  They had Keegan in a mist tent.  They had him hooked to oxygen.  They took blood.  They took stool and urine.  They did a strange little gauze test to collect sweat on his arm.  They told me to keep him in his room, because they didn’t want him to infect anyone else if he had something.  They discovered he had no bacteria growing.  That’s a good thing, they said.

The next morning (May 4, 1984) about 10AM, Tracy Trotter, our regular pediatrician, appeared in the doorway of the hospital room.  “Jill, I need to talk to you.”  Keegan was lying in a crib near me.  We were in a double room, but the little kid with the broken leg had left a bit earlier.  I was alone.  His dad was at work.  “We are very certain that Keegan has something called ‘cystic fibrosis’, but you need to take him to Children’s Hospital in Oakland.”  “What is that?”  Go there.  They’ll explain it.  “I don’t know where it is.”  They gave me directions.  Why didn’t they send him and me, since I was close to shock, in an ambulance?  I’ll never for the life of me figure that out.  I called his father, Mark, holding myself together to get through his secretary until he picked up the phone.  Tracy Trotter was standing there hanging onto me.  I was sobbing in the phone.  Mark dropped everything and said, “I’m catching BART.  Pick me up.”  I cried on Tracy Trotter’s shoulder while he attempted to console me.  I didn’t even know what CF was.  Why was I crying?  I didn’t know.  I just knew whatever it was, was a big nasty thing.  I knew that they were upset, so I knew that I should be.  I knew something big time was wrong.  Tracy told me that things would be fine.  I’d learn to be a good CF mother and Keegan would be fine.  I remember yelling … “BUT I DON’T WANT TO BE A CF MOTHER.  I REFUSE TO BE A CF MOTHER.”  (Isn’t denial great … especially when you don’t know what you are denying???)

I packed up Keegan and his stuff and walked out of the hospital.  I remember someone saying to me “oh how wonderful that you get to bring your baby home”.  I remember just staring through them.  I remember them asking if I was ok.  I wanted to scream yes and no and anything but my mouth didn’t work.  I just kept walking.

I drove to BART.  From the time I got Keegan into his car seat to when I got to BART, I have no recollection.  It’s at least a 20 – 30 minute drive.  There’s nothing.  So I parked at BART.  Mark got off at the opposite end of the station from where I parked.  I was 4 long city blocks away.  He heard me scream for him over the city traffic and the passing BART trains.    I remember watching him run from the stairway he came off of to the car in his suit and tie, carrying a briefcase.  He was at a dead run.

Now here is where it’s interesting.  I don’t recall driving to Children’s.  I don’t recall getting there.  I don’t recall parking.  I don’t recall going into the hospital.  I don’t recall checking in.  I don’t recall going up in the elevator to the 5th floor where they kept the CF children then.  I don’t recall going into the room.  I remember meeting a family that we were sharing the room with.  They had experience with CF.  (This is when they still roomed CF patients together before they realized they shouldn’t.)  But they had “experience”.  Their daughter was 7 months old.  Wow.  They’d teach me.  The other baby’s father was watching the Kentucky Derby preliminaries.  My mother and my sister were at the hospital when we arrived.  I do remember that.  I remember a doctor showing up in our room … Dr Nickerson was his name.  I didn’t like him from the word “go”, but then I wouldn’t have liked anyone at that point.  I remember him taking us to an empty conference room on the 2nd floor in the Pulmonary Department.  The Kentucky Derby preliminaries were on an overhead TV in the room.  He sat down and clinically explained CF to us.  I was a bit stunned and in shock.  I remember forcing myself to be with Keegan while they worked at getting IV’s in his arm.  It took several tries.  He screamed the whole time.  I sobbed.  They tried to drag me out.  I remember telling them … screaming at them was more the case … that this was my baby, and they weren’t going to take him anywhere without me.  It finally got in.  They told me that I didn’t have to force myself through all that.  My sister and my mother could hear the screaming baby down the hall with me yelling too.  I told them I had to force myself through it when he was an infant so that when he was older and needed his mommy as a toddler to sit there, I could do it and not fall apart or faint or whatever.  I made it.

The next day (Saturday, May 5, 1984), Dr Nickerson showed up again.  He talked to us in the room this time.  “Your baby is malnourished, dehydrated, and anemic.  Both lungs have collapsed.  We may have to do a blood transfusion.”  The Kentucky Derby was playing in the background.  “He may die.  He’s not at all well.  Why haven’t you brought him into any doctor before now?”  I nearly fell apart with that accusation.  We’d been in and out of doctors’ offices since he was born … but … I held together.  He had my child’s life in his hands.  I needed to keep it together.  I remember telling him to not do a transfusion and to only do one from someone I picked if they really had to.  This was when blood supplies could still be tainted with AIDS, because they were still figuring that out.  That’s all I’d need. 

I still can’t fathom how I got from Muir to Children’s on my own.

On Monday morning, May 7, 1984, John McQuitty took up ward duties in the hospital.  He came in and asked how I was.  He asked how Keegan was.  He asked how Logan and Mark were.  He asked if I was sleeping yet.  He told me it was ok to cry.  He told me that he wanted my input on Keegan’s well-being, because, while I might not understand CF yet, I lived with Keegan 24 hours a day and would know him as an individual better than any doctor would.  He listened to me answer questions.  He could tell I was holding myself together.  He could tell I was “staying strong”, because that’s the way I was taught to handle any challenge in life.  “Don’t show your weaknesses.  Don’t cry.  Don’t show your dirty laundry.”  He told me it was ok to cry.  He listened to me.  John McQuitty saved my sanity.

The Kentucky Derby.  Easter.  They still make my stomach and my head do weird flips.  Just the topic can make my stomach clutch up.  Only a CF parent or those that have been through hearing that they themselves or a loved one have CF (or any other major life-changing, life-threatening illness) will understand that certain days and certain events will always remind them of when they heard.  The Kentucky Derby.  Easter.  It’s odd that good days like those can make my stomach clutch and turn inside out.

 

 

 

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We all take different paths in life, but no matter where we go, we take a little of each other everywhere.

-Anonymous

 *~*~*

02-29-1984 (2:30 pm Pacific Standard Time)

to

05-30-2001 (5:47 am Pacific Daylight Time)

 *~*~*

This week would have been my late son, Keegan’s, 29th birthday (or 7¼ years old, depending on how you look at it, since he was born on Leap Day).  I can’t believe it’s been that long since he was born, because he’s forever 17 in my mind.  Seventeen is how old he was when he died … and he died almost 12 years ago.  It seems like yesterday.  It seems like forever.

 

Keegan was born with Cystic Fibrosis.  I’ll describe that another time, but it’s a genetic disorder.  You can also look it up.  Keegan had a double lung transplant at the age of 16 at Stanford Hospital.  That was the best gift he ever received … the gift of life.  We are forever thankful to his donor family.

 

Right now … I’ll explain Keegan as a person, because he was truly an exceptional person.

 

*~*~*

Hmmmm … how do I explain Keegan?  Nothing can explain Keegan.  He was an entity and a force all on his own, with a will of iron, a desire to prove himself, and a personality that affected all of those around him.  He positively influenced people for the better more in his short 17 years of life than most people can in 100 years of life.  Even his newborn baby picture taken by the hospital showed how truly unique he could be.  I laughed till I cried when they sent this to us (since that was back before the instant digital picture).

WTF

WTF is THAT weird looking thing at the end of my arm?

 

 

 

Keegan loved life.  He loved to laugh.  He loved the absurdity of it all.  He played hard … he studied and worked hard in school … he was fiercely independent … and he was very proud of his brother, Logan, and his sister, Kara.  He fought to live life all the way to the end.  He was never a quitter.

 keegannlogan

So … what can we do to terrorize Mom today?

 

 

Keegan loved his 6 cats, Meower, Tabu, Bandit, Spike, Chewie, and Ewok, with a passion.  He loved Star Trek, Survivor, Taz, rollercoasters, and the music of the 60’s and 70’s … or music made famous by Dr. Demento and Weird Al Yankovic.  He wanted to graduate from Foothill High School in Pleasanton, CA, in the year 2002, along with the rest of his class, and he wanted to go to the University of Southern California, as had his maternal grandparents and his cousin, Chris, to study to be a lawyer.  He liked to tease his sister and his cousin, Allyson, about their “floofy hair”.  His family and his friends were his life.  He was, as are all my children, one of my best friends.

 keegannkara

 Can your hair BE any floofier on this cruise?

 

 

Nevertheless, I think that one of the best ways to describe my beloved 2nd child is in the words of some of his friends that emailed me a year ago on his “real” birthday, since it was a Leap Year last year.

*~*~*

Happy birthday Keegan. Technically, you’d be 28 today, but because you were a leap-year baby I’d be giving you a “Happy 7th Birthday!” card if you were still with us. Because we were in high school when you left this world, you’ll always be immortalized in my heart as the crazy green-haired kid under the tarp with our gaggle of friends, in the pouring rain, at the Santana concert… the “passenger” when we got kicked out of Walmart for “shopping cart racing” …and the kid with the “hot date” (aka your oxygen tank) when we played “Chinese Fire Drill” at the Fairgrounds’ drive-thru Christmas light show. You never missed a pre-dance dinner, even when your condition was too fragile to attend the actual school dances with us. You never burned me a mix CD without slipping the Mortal Combat theme song in there for no apparent reason. I still crack up when I hear that song. Thank you for all the awesome memories, and all the other stuff happening today that I’m going to credit to you. Let’s start with free pancakes today at Ihop. That totally sounds like your doing! Bizaar weather changes? Your mom is right: It’s all you, buddy! If Mortal Combat comes on over the radio today, I’ll send you a Twinkie offering via the microwave… which actually sounds like a pretty awesome thing to do anyway… Great. Now I have to call the radio station and make a request that’ll make me sound crazy. Thanks Keegan, you did it again! Miss you buddy!!

*~*~*

Dear Keegan, I would like to take this moment to thank you for being in my life. Impacting my views of friends and showing me that awesome people come in amazing packages. And for as far as I can tell starting my love affair with Pisces. Just wanted to let you know you will always be missed and thought of often and fondly. ❤

*~*~*

Happy Birthday Keegan. You were one of, if not, my best and dearest friend in middle and high school. We shared so many memories and good times. I truly am a better person for knowing you. I happened to find an essay that I wrote about you in high school today and I will always remember your faith, love and respect. God Bless you my dear friend. Can’t wait to see you again someday – you better be waiting for me by the gates because I will be looking for you. I love you.

*~*~*

… a former teacher wrote:  I sang to him. ❤

*~*~*

… a former teacher wrote: Even my students knew what day it was.  Amazing, the power an exceptional human being has to touch people forever.  Magic.

*~*~*

… a former teacher wrote:  I could not agree more.  Keegan did more in his few years than most of us ever hope to do in 80.  The fact that his birthday is a most unusual date was simply an early message of the legacy he would create.

*~*~*

As his mother, I sing to him every year.  I bake a cake for him every year (FunFetti because he loved that kind of cake).  He was born by emergency c-section on Leap Day, 1984.  Like I said in a prior blogpost earlier in the month, he was due on Valentine’s Day … but I knew by the way he felt during my pregnancy that it would either be Ground Hog’s Day or Leap Day.

It was truly Leap Day … and it wasn’t even planned that way.

He was and still is an exceptional and very old soul.  His spirit is an amazing force.

Celebrate the life he lived.  His wish is that we not be sad and somber for him, because, as he told us a long time ago, “If you’re sad, you aren’t being sad for me, you’re just being sad for yourselves because I’m off enjoying my new self.” 

Even when he died, he didn’t want a sad somber funeral or memorial service.  He wanted us to have something he would have enjoyed going to and to remember him as he was … full of joy and full of life and full of his own wicked sense of humor.

Celebrate Me

By Max, The Poet

Remember the good we shared,
In all you do.  Celebrate me!
Remember how I taught you things,
Like what our lives are meant to be.

Smile for me when you’re feeling blue.
Think only of joy when thoughts of me enter in.
Do not cry for me.
A new chapter in my life, do I begin.

I am certain that I’ll miss you.
Sure as snow upon the mountain,
My love for you will not end.
It pours forth from my heart’s fountain.

So, as you mourn, and begin to heal,
Remember always: it is you I adore.
Forever and ever, I am at peace.
Celebrate me, once more!

 

Keegan’s maternal grandfather used to tell us to “play the cards you’re dealt in life; enjoy the game while you’re in, and never ever ever fold.”  Keegan exemplified this spirit all the way to the end. 

Keegan’s desire to do everything on his own, even when he needed assistance, exemplified that.  I remember that, even when he was 2 years old and having difficulty dressing himself, he would shout “SELF!!!” when someone (generally me) tried to help him.  He’d make his entire body stiff as a board so that no one could help and so that he could do it on his own. 

Keegan definitely played the cards dealt in life all the way to the bitter end.  His Grampa Glenn and I continue to be proud of that fighter’s will, even with Grampa Glenn (my father) as well as Keegan both long-deceased from this life.

One of Keegan’s biggest fears was that he’d be forgotten after his death. 

Keegan, we will never forget you (how could we forget that goofy grin and giggle of yours as well as your multi-colored hair), and we will always love you.

bluehair

Hmmmm … what weird color can I make my hair next?

 

 

Keegan, we again celebrate your joy in life and your will to live.  You even changed the life of Roy, who never had the pleasure of meeting you.  He is influenced by your strong presence and spirit.  Your joy and your will carry on.

irish 

I think, laddie, that I’ll do a jig for you now.

 

 

*~*~*

www.keeganfund.org

This is the memorial scholarship fund in his name.  It will be changing focus this year to a slightly broader base, but this will give you the idea of what he was like.

*~*~*

I will miss you forever and always, baby boy … and I will miss your gravelly voice, your deep guttural laugh, and your million dollar smile.

mickey

Ok, Mickey, let’s get this boat moving now. 

 

 

 

 

 

 

 

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