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Posts Tagged ‘Jill’

For those of you that know (or even for those that don’t know), I had a torn rotator cuff.  My surgery was 6 weeks ago.  I’ve been back to work for 4 weeks.   

I was finally allowed to remove the sling on Friday.   My arm still hurts like ____ and physical therapy is sheer torture due to the stiffness of it, but it’s moving along well (at least according to my surgeon and my physical therapist).   I’m right handed … and of course it was my right shoulder … so it’s been entertaining (to say the least) to function left-handed the past 6 weeks.  I still am for that matter as my arm strength and mobility just isn’t there yet. 

I can finally type a little better … so here are my words of wisdom: 

Don’t tear your rotator cuff.
Whatever it is I did, DO NOT DO THAT. 

 At least the surgery went well and in the long run, it’ll be much better than prior to surgery … but still … it’s not something I’d want to do often anyway.  (More rotator cuff blogs from my viewpoint will follow soon.)

So anyway …

Don’t do it. 

Just don’t. 

That is all. 

Carry on.

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While we may have only been married for 9 years now, it has certainly been an interesting road we’ve been on with twists, turns, dips, and climbs.

 

 

*~*~*~*~*~*~* ~*

 

Today I took a walk up the street

And picked a flower and climbed the hill above the lake,

And secret thoughts were said aloud.

We watched the faces in the clouds

Until the clouds had blown away.

Were we ever somewhere else?

You know it’s hard to say.

I never saw blue like that before …

 
NEVER SAW BLUE LIKE THAT

Shawn Colvin

 

*~*~*~*~*~*~*~*

 

There is absolutely no one else with whom I’d rather be on my current life path than you.

 

Happy Anniversary, Roy!

 

I love you!

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“I’ve got to tell you I’ve been rackin’ my brain, hopin’ to find a way out.   I’ve had enough of this continual rain.  Changes are acomin’, no doubt.  It’s been a too long time with no peace of mind, and I’m ready for the times to get better.  …  I feel so lonesome at times.  I have a dream that I could live.   It’s burnin’ holes in my mind.”   Crystal Gayle

We all know how some days/weeks in life are better than others. Right now, I have a job I smile through gritted teeth at and bear until I can leave for the better life I work toward. 

Management is insulting to not only me but also to anyone not part of their virtual “good ol’ boy” in-club/political cronyism that gets all the job favoritism heaped on certain people that have no real ability or knowledge to actually *do* the work they are paid top dollar for, while those that actually WORK are told they aren’t “good enough”.  What it boils down to is that there are those of us that take actual PRIDE in what we produce and refuse to kiss political ass.  We refuse to play their games.   The idiotic powers-that-be don’t like that.  It’s like high school cliques and being around the “mean girls”.   I didn’t do it then.  I sure as hell won’t now.  I have entirely too much self-respect … something that is in very short supply in today’s world. 

Then there’s Roy’s job that doesn’t understand basic scheduling and caters to one person who manipulates everything to provide only good schedules to him.   Roy gets the dregs … because of management ineptitude that is too afraid to upset the apple cart and wants everything easy on them.   What they fail to understand is that not addressing the issue just causes more issues in the future, particularly since, when their “golden boy” gets into scheduling nightmares (which he is VERY prone to), they then depend on Roy to bail them out. 

So what is my point here?  My point is … I am glad to be working toward financial independence so that we don’t have to depend on the inept or the cronyism that is rampant. “Regular” jobs (whatever the hell those are) … suck … BIG TIME. 

Have a Plan B.  

  

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On November 23, 2002, I received an email from a random person from Maine that had the wrong email address and was trying to get in touch with a buddy in Boston. Normally, I would have ignored it. However, I could tell he was trying to set up some time to visit, so I sent a quick email back telling him he had the wrong email address. That spawned an online friendship. Five years to the day after that, we got married. It’s now been 11 years … and it’s our 6th anniversary.

We are probably the least likely couple you’d think of. He’s younger than me. He lived in Maine. I lived in California. We’d have had no reason in the world to have met unless it was supposed to happen. We both thought we were crazy. Anyone that knew us and heard about it thought we were crazy. I kept thinking that “this will never work”. So did Roy. However, we had to at least try … because … for both of us … we just knew!

“I’ve got you under my skin. I have got you deep in the heart of me, so deep in my heart that you’re really a part of me. I’ve got you under my skin. I’ve tried so not to give in and I said to myself, ‘this affair, it never will go so well’, but why should I try to resist, when, baby, I know so well that I’ve got you under my skin? I’d sacrifice anything, come what might, for the sake of having you near, in spite of a warning voice that comes in the night, it repeats, repeats in my ear. ‘Don’t you know, you fool? You never can win. Use your mentality. Wake up to reality.’, and each time that I do, just the thought of you makes me stop before I begin, cuz I’ve got you under my skin. I would sacrifice anything, come what might, for the sake of having you near in spite of warning voice that comes in night, it repeats how it yells in my ear. ‘Don’t you know, you fool; there ain’t no chance to win? Why not use your mentality? Wake up! Step up to reality!’ And each time I do, just the thought of you makes me stop just before I begin, because I’ve got you under my skin. Yeah, you grabbed me under my skin.” Frank Sinatra

We don’t believe in coincidence. I’ve mentioned this before. When people tell us what a “coincidence it is” that we met … or how “lucky” we are … we just laugh. It’s neither a coincidence nor luck.

20131123-140501.jpg

… and more often than not, we look up and smile and know it was God …

So … God … we both thank you for bringing the joy that we have found after everything that we’ve endured over the years.

Life is good now … and while we’ve been through some MAJOR challenges over the years, this seems to be our general feeling of late:

“Still it’s a real good bet the best is yet to come. The best is yet to come, and, babe, won’t that be fine? You think you’ve seen the sun, but you ain’t seen it shine. Wait till the warm up’s under way … wait till you see that sunshine day. You ain’t seen nothin’ yet.” Frank Sinatra

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 “She gets hungry for dinner at 8.  She loves the theatre, doesn’t come late.  She’d never bother with anyone she’d hate.  That’s why the lady is a tramp …  will not dish the dirt with the rest of those girls.  That’s why this chick is a tramp.  She loves the free cool wind in her hair, life without care.  She’s broke, but it’s oke.  Doesn’t like California, it’s cold and it’s damp.  That’s why the lady is a tramp.  She gets far too hungry, baby, to wait there for dinner at 8.  She adores the theatre, however doesn’t get there late.  She’d never bother with someone she’d hate.  That is why the lady is a tramp.” 

‘THE LADY IS A TRAMP’; Frank Sinatra

 

 

i'm different

 

 

No one has ever understood me, as I’ve said before.  I come from a long line of people who the sheeple of this world don’t understand.  That’s ok with me.  I’m happy with who I am and I do ok in life (generally at least).  I may get knocked down but I always come back up, swinging.  Nothing, and I mean NOTHING, will ever keep me down for long.

In any event, I have always had family and friends that laugh at me because I’m different and I march to my own beat.  That’s ok.  I also know that I fascinate them all with how I carry on.  That’s ok too.  All I care about is if my husband, my children, and my mother/father love me and care for me.  They do.  They may not always understand me … but they love me for who and what I am.

 

 

“… My friend, I’ll say it clear.  I’ll state my case, of which I’m certain.  I’ve lived a life that’s full.  I traveled each and every highway, and more, much more than this, I did it my way!  Regrets?  I’ve had a few but, then again, too few to mention.  I did what I had to do and saw it through without exemption.  I planned each charted course, each careful step along the byway, and more, much more than this, I did it my way.  Yes, there were times, I’m sure you knew, when I bit off more than I could chew, but, through it all, when there was doubt, I ate it up and spit it out.  I faced it all, and I stood tall and did it my way.  I’ve loved.  I’ve laughed and cried.  I’ve had my fill, my share of losing, and now, as tears subside, I find it all so amusing.  To think I did all that, and may I say, not in a shy way!  Oh, no!  Oh, no, not me!  I did it my way.  For what is a man?  What has he got, if not himself, then he has naught, to say the things he truly feels and not the words of one who kneels?  The record shows I took the blows and did it my way.  Yes, it was my way.”

‘MY WAY’

 

 

I think I’ve done ok with my life.  I am a Baby Boomer that was raised a suburban kid.  I went through college.  I got a good degree.  I stopped working to raise my children.  Two out of my three wonderful children had disabilities.  One of them has died.  I’ve been through divorce, major medical issues of my own, financial upheaval, remarriage, relocation, unemployment, and job searches.  However, I have ended up with a pretty darn good job (since I must have a job right now, although I’d sooner not work than have to work, but that’s a different topic altogether) on Capitol Mall in Sacramento, 2 blocks from the State Capitol Building, in a very politically charged arena, and am being promoted quickly up that ladder.  Roy and I have a thriving online marketing business and a mobile disc jockey business.  We live in a terrific rural area, well outside of suburbia and city-life, which is definitely our preference.  Roy has a good new job.  After many years of instability financially, we came out as united as ever, swinging and fighting our way out.  We have, as we both always do, landed on all 4’s.  (Yes, that’s a mixed metaphor and I don’t care.)

 

 

“… & everything’s starting to hum. Still it’s a real good bet the best is yet to come.  The best is yet to come, and, babe, won’t that be fine?  You think you’ve seen the sun but you ain’t seen it shine. Wait till the warm up’s under way … and wait till you see that sun shine day.  You ain’t seen nothin’ yet!  The best is yet to come, and, babe, won’t it be fine?  The best is yet to come!”

‘THE BEST IS YET TO COME’

 

 

Today is my birthday and I love having birthdays … because they are by far better than the alternative of not being here to have one.  I am cut from a different cloth than most people and celebrate my uniqueness … and I’m glad to be married to someone who saw that in me and celebrates the fact that his wife is unique and different too.  As Roy has told me, that’s much of what attracted him to me … and part of why he married me … because he knew he was the same and that way we’d understand each other’s quirkiness.  I continue to do it “my way” and plan on doing it “my way” for some time to come.

Now, admittedly, at times Roy (or those that love me) may get frustrated by the fact that I am not normal, but I can’t and won’t change … and they wouldn’t really want me to do so.  At least someone who truly loves you wouldn’t want you to change.

While I’m not by any definition of the word “young” any longer, my spirit is … and my personality is … and I will live to enjoy my life as long as I can.  Using my love of good wines … my life is like vintage wine, all the way from the brim to the dregs!  I’m still living it to the fullest no matter what happens and no matter how old I am.

 

 

“When I was 17, it was a very good year. … When I was 21, it was a very good year. … When I was 35, it was a very good year.  … but now the days are short, I’m in the autumn of the year, and now I think of my life as vintage wine from fine old kegs, from the brim to the dregs, it pours sweet and clear. It was (and is) a very good year.”  

‘IT WAS A VERY GOOD YEAR’

 

 

So …

… with that …

 

 

WHEN I WAS 58, IT WAS A VERY GOOD YEAR, NO MATTER WHAT ISSUES CAME UP!

 

 

AS I TURN 59 YEARS OLD TODAY, I CAN HONESTLY SAY THIS UPCOMING YEAR WILL MOST DEFINITELY BE A *VERY* GOOD YEAR!!!

 

 

HAPPY BIRTHDAY TO ME!

 

 

birthday

 

 

There may be only a few of us “mavericks” around … but Roy (and my daughter) in particular knows this would fit me better than a lot of people who think they know me realize.

 

 

boots and dirt

Roy figured out that this is the way I am …

… and married me anyway …

… and loves me anyway …

… whether I’m in my cowboy boots …

…or …

… on my mountain bike …

… but …

… I do love my boots!!!

 

 

“Blame it all on my roots, I showed up in boots, and ruined your black tie affair.  The last one to know, the last one to show, I was the last one you thought you’d see there  …   Well, I guess I was wrong.  I just don’t belong, but then, I’ve been there before.  Everything’s all right.  I’ll just say, ‘Good Night!’, and I’ll show myself to the door. Hey, I didn’t mean to cause a big scene  …  Yeah, I’m not big on social graces, think I’ll slip on down to the Oasis, cuz I’ve got friends in low places …”

‘FRIENDS IN LOW PLACES’, Garth Brooks

 

 

While I may have been born into a fairly comfortable life up-front, things haven’t always gone “easy” for me, and I fought my way through.  Besides, as I’ve discussed before … I never fit the mold of “California Girl” or “suburbia” (more like “suburgatory” in my eyes) or “high-class” or “Beverly Hills” or “Hollywood” or however you want to classify any part of me being born in California in the middle of the Baby Boom generation.  I am more in line with people like many of my ancestors  …  7 brothers thrown out of Ireland in the 1600’s and sent to the New World  …  a young German boy who stowed away on a ship in the 1700’s and came to America on his own, never looking back  …  the upper-crust that chose to move to California in the early 1900’s in search of entrepreneurship and a less stifling life  …  a divorced Dust Bowl woman who moved to California with 2 young children  …  Rob Roy  …  or so many more than are listed.

 

 

“I wish they all could be California girls …”

‘CALIFORNIA GIRLS’, The Beach Boys

 

 

I may have been born a suburban Baby Boomer kid raised mostly in California (but not completely … read prior blogs) listening to rock-n-roll music and raised fairly comfortably, but you can’t even classify me by the music I like.  I like Big Band.  I like Classical.  I like Rock.  I like Country.  I like a variety of other things.  I’ll credit my mommy and my daddy for giving me a wide foundation in music.  (I just don’t like rap.)  Don’t try to classify me.  It won’t work.  Probably the closest is this:

 

 

“I am a red, white, and blue blood graduate of Honkytonk U.  That’s right – a red, white, and blue blood graduate of Honkytonk U.” 

Toby Keith

 

 

No … I’m not politically correct.

… never have been … never will be …

 

 

Pay close attention here …

 

 

I NEVER HAVE BEEN POLITICALLY CORRECT!

I NEVER WILL BE POLITICALLY CORRECT!

 

 

 

… getting ready to go ziplining in Kauai with Roy …

 

 

Hey, Roy, it’s time for me to put on my boots!

Let’s go out to dinner tonight and celebrate my birthday in STYLE!

I’ll try not to get dirty or muddy … but I won’t guarantee anything … ever … 

 

 

 

 

 

Carry on, all!

 

 

 

 

 

 

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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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