Judgment

Over the years, I've found so many new friends and received so many comments and emails from people saying how my words here have inspired them.  I'm humbled.  I always have been.


As this is my website, these are my words.  While we have free speech in this wonderful country, I'm simply tired of the hassle that comes with dealing with those who consistently, vocally don't agree with me and/or judge me, those few trolls who judge each one of my entries with their own personal standards.  At the same time, I need to uphold the professionalism I'm developing in my nursing and childcare careers.


This blog will still exist, but it will be private.  It will be locked.  To those who are cheering and saying, "I knew it!" or "I told you so!" or "I caused her to succumb!", ha.  Save your glee. I am now able to write even more freely before, saying whatever I want in however way I want to.  This choice is freeing to me. I can invite anyone I want to read my words, people I trust, people I value.  I no longer have to worry about posting what you may see as "the wrong thing," invading my own privacy.  I no longer have to worry about my thoughts, health, morals, and life situations getting into the wrong hands.


You're scheming, and you're not who you think you are.  One of these days, you are going to cause a vulnerable soul to completely collapse.  Then you'll realize how caustic your opinions are.  Whoever is roaming around here on your Biblical soapbox, perhaps you forgot what Jesus taught us about judging.  Judge not lest you be judged yourself.  May you cast the first stone...  Oh wait, you already have.  


But I have friends, true friends, who fill me in on you.  Yes, you.  And I'm smart enough to fear human resource departments, stalkers, and conniving people who pretend they're my friends. 


I'm excited.  I can say whatever I want to say, however I want to say it, with whatever pictures or information or videos I want to add.  This will truly be my open forum, while before, I've had to be careful because of my common sense.  Don't get me wrong - I've been painfully honest and candid, but still careful.


If you've been stopping by to judge or stalk me, may karma be upon you.  What comes around goes around.  On the other hand, if I helped you along the way, I'm humbled.  If you stopped to let me know, thank you.  My thoughts and prayers are with you all.


Please continue to follow me on my transplant blog and/or Twitter, both of which will remain active.    Or here's a thought - why don't you try email?  [agoodwin 2010 (at) gmail (dot) com] Isn't it amazing how these gadgets of ours have taught us to have more acquaintances than friends?  


It's been an amazing 3.5 years.  Again, I love you, sweet followers.  Fear not - you'll be hearing from me in the future with my in-progress memoir.  I promise you that.


All my love,

Class of 2005

So you know it's pretty bad when you have a 5 year reunion coming up.  Yes, technically I graduated from a homeschool type program, but I got to see the world and start my nannying career, so it's all good.  Plus finishing out through the 10th grade at 2 sister small private schools is honestly all the education anyone ever needs for college, so I don't mind.  I don't like to volunteer the info, but I don't feel any less smart or special for it, and I don't disrespect people who are homeschooled.  I have several friends who did homeschooling, so see?  :)


But anyways, our class was so small and most of us had even gone to elementary school together (the 2 sister schools - PK-6 at one, 7-12 at the other), so they adopted me into their Class of 2005, when really, I was at home opening a diploma in the mail while they were tossing hats and giving speeches.  :)


Not only working for the traveling and nannying, but it worked for my health as well.  5 days a week of all day long + homework and projects was really getting intense on this body with its failing liver.  I really got to do so much in those 2 years I left my private school, and although I wish I would have stuck it out, I wouldn't trade what I did instead for the world.


So anyways, my sweet friends are including me in their official class roster, and our reunion is in November.  I had to fill out a yearbook paper for some project they're doing, and I realized how randomly unexpected my life is.


Would you like me to talk about how I'm supposed to get married on Saturday?  We had a photographer, an invitation stamp, colors, a florist, and I even had a dress.  I think we had most everything in real life or in our heads except for the cake shop.  We ate it, dreamed it, breathed it, it was our perfect day.  Then someone decided to be un-perfect and here we are. You might hear from me on Saturday - I tried to get into my old therapist so I could scream and cry about what is not supposed to be right now, but she can't see me till the end of October.  So that leaves my friends.  :)  And it's not just the wedding - that's the least of my problems.  But the fact that I'm not yet graduated and my stomach has 2 dehisced craters in it?  The idea that I have another month where I'm not allowed to drive, a couple months where I can't lift over 5-10lbs?  Yeah, I'm pretty close to insane, friends.  There's a reason I see a therapist who insurance won't even cover.  I think the parents realize it's worth the money - I say sweet and sane at home and about lose it to the woman I haven't seen since last December.  Boy will she be surprised.


Anyways, this yearbook... I will share with you what I put, because it describes my life in a nutshell and I know I have a lot of new readers and friends and honestly it might be fun to read in a few years (right...)

(I tried to find some high school pictures for your evening enjoyment but all I could find was this of Nik and I in elementary school - gotta love a lifetime of private school uniforms!!)


And back to the yearbook....

Name: Amanda Goodwin 

Thanks To: God, my amazing friends and family, my precious nanny families, and more people than I could ever list in a yearbook

Faves: Pink, Grey's Anatomy, traveling, entertaining, writing, kids, going out with friends, crafts, Coach bags, organization, anything Mac, learning, my Pandora bracelet, visiting Paris, staying up late, shopping, holidays with people I love, Vera Bradley, and movie nights (faves - Katherine Heigl and Audrey Hepburn)

Quote: The Desiderata by Max Ehrman (Google it) or, for something much shorter: 

May we all stand on tiptoe to hear His voice, eager to obey and ready to be surprised. - Joy Williams

Bible Verse: But the eyes of the Lord are on those who fear Him, on those whose hope is in His unfailing love.  Psalm 33.18

Real World:  Since graduation, I've done a lot of living and loving.  I've seen some of Europe, a lot of the US, and I've dabbled in freelance writing and been published a few dozen times in various scrapbooking "magazines." (Yes, they exist!)  Most importantly, I'm in my 6th year (usually part-time) at KSU's College of Nursing, held back by health problems. I had a liver transplant 8/31/10 which the doctors say will give me a brand new life.  I'm hoping to fully recover and finish my BSN-RN quickly before living my calling in oncologic nursing, possibly pediatric.  Meanwhile, I've been a nanny since leaving CVCA and have loved every minute of it.    

Family Status (I think that's what FS stands for, lol): I'm recently single after a 2 year engagement. I adore being Mommy to my 5 year old furbaby, Haylie Brooke, and as a nanny, I have all the kids I could ever want. Definitely good enough for now. :)

So... am I a cool kid or what?  I'm sure I speak for most of us when I say I am SO glad high school is over!!!  Who isn't?  Especially when you went to a private school where you got about an hour's homework each evening, not to mention exams and projects.  There were 9 periods in a day, 8.20-3.10 class time, minus lunch, and 1 study hall if you're lucky.  So that's 7 periods of homework, 7 hours, again, if you're lucky.  that's 3:10+7 hours = 11pm bedtime if you got a tiny dinner and were able to get some of the homework done in record speed.  But then again, would I want to be in college forever?!  Ha, too late - I have been in college forever!!!  

Two blog awards

My dear Cali friend nominated me for this "Honest Scrap" award.  According to De Ann (or now, may I call you Tootie since you've finally proclaimed it to the world?) I must list 10 random facts about myself.  Then another dear blog reader, Maureen, gave me the Fabulous Sugar Doll Blogger Award which coincidentally means I must list 10 random facts about myself.  I'm very random, but I'm not very good about making lists like this, so I will let myself cheat and fulfill both obligations with one list.  :) 

1.  My wardrobe has grown increasingly brown and black.  It was a recent discovery, and yes, it's random.  I still have a complete rainbow in my closet just because of my insane amassment of clothing in there, but I keep going for the brown or the black every time I go shopping, every day when I get dressed.  And this is not a new randomosity - I'd say the past year, maybe?  And plus, it makes just-the-right earrings and no-one-but-Amanda-would-wear-that necklaces way more fabulous.

2. I'm glued to my pink Coach datebook.  I live by that thing.  It may or may not be in my iPhone, but it will always be in the datebook. If someone were to take it, I'd feel lost and probably go into a panic attack.  Knowing my recent luck, that said panic attack would probably end me in the psych ward.  Not even kidding.

3. My dog is my human daughter and if I had more time, I'd have a few more.  My goal is eventually to graduate to human procreation, but at the moment, nannying is enough kids for my life.

4. If I find a cute top or pair of jeans that fit just right or adorable, must-have shoes, I will buy it in all the colors I can fit into my wardwrobe.  It's pathetic, really.  I feel like Doug -remember that Nickelodeon cartoon where the kid wore the same outfit every. single. day. Ha!  Case in point: Old Navy fold-over yoga pants (2 pairs black, 1 pair black capri), cute heel boots (black and brown), favorite Coach bag (black and brown), my favorite t-shirts (I'd say about 5 different tops with 2 to 4 colors of each)

5. I love my Pandora bracelet.  I didn't even know what they were until a few months ago, and then it was what I wanted most for Christmas.  Well, I got one, and have two spacers and the following beads: a heart from Jonathan, a dangle cross from my sister, a pink stone from Grandma, and my Nana's birthstone (and mine - we're both born in August) that I bought with the money Poppop gave me for Christmas (in her memory of course)  There's so many more charms I'd love to add, but what's so special if there is no story behind each charm?  Going to Jared and stocking my bracelet would be fun, but it would make the bracelet meaningless.  Plus, I love how the beads slide all around now.  It wouldn't do it if it was full!  :)

6. I am, after 5 1/2 years, single again.  It's surprising how fast I've reverted back to my ways of not shaving my legs, doing whatever I want to do whenever I want to do it, and drooling over any man-candy I may encounter.  I'm unabashedly single and hoping I'll soon love it as much as I used to.... before things got so complicated and I fell head-over-heels in love.  I'm a single adult for the first time in my life, and I find it liberating sometimes.  There's a few things I want to do before I settle down again, and I think that's awesome.

7. I love giving stuff away or even selling stuff.  I find some hidden joy in finding someone on Freecycle or Craigslist or eBay who really want my used whatevers.  I give all my old accessories to my friends and cousin, too.  I'm doing some massive cleaning out lately, and I have been doing all of the above plus filling a huge box for our church yard sale which is like 6 months away.  Purging feels so good.  I don't know how people can hoard stuff unless of course, they're simply too busy to clean it out.  That would be a problem.

8. I had to hit rock bottom and lose all but my very life before I realized how much God loved me and keeps His hand on my life... despite myself.  Despite ourselves, He is watching over us.

9. I love to buy cards and gifts for people.  I love wrapping presents and curling the ribbon.  I love tying on pretty tags and finding just the right card.  :)

10. I always bite off more than I can chew.  Any project I seem interested in, I dive right in, give 200%, and usually find out I'm too busy for it after all or just get bored with it.  I take "live life with passion" a little too literally.  I also think I can do anything until I realize I can't.  Now, I can do many things, and I believe anyone can do anything they set their mind to, but that's completely not the point on this one.  Case in point?  If you'll hem my pants, why do I need to waste all that frustration of trying to do it myself?  For less than an hour's work pay, I can get my car washed at the gas station with the extra nice soap and special clean whatever?  I will not wash my own car, waste 2 precious hours, get soaking wet, and earn myself an evening on the heating pad with a muscle relaxer.  How about food?  If my mom is home, she can make whatever I want better and faster, and everyone has curb-side take out now, so learning to cook?  Nah, no point.  And along the same lines, I really do think I have more hobbies, or attempted hobbies, than any sane person should have... and probably less time for hobbies than most people have.

My duty, again according to Tootie, in accepting this honest scrap award is that I must award it to seven other blogs.  Maureen passed it onto three.  So I have no idea.  I'm going to now cheat a second time in one post and say this: If you want, just post it on your blog and link back.  How's that?  Twitter friends, blog reader friends, whoever you are...  I think you all rock.  And if you're extra busy like me, just go on with your life. But I have fulfilled my honors and obligations and will now go do my Nursing Research homework and think about who I can bribe to paint my bathroom brown. All before a 2 year old and 5 month old wake up from their naps.

Love to you all!

Try. This is me trying.

I can't believe I haven't posted in 2 weeks!  Of course a lot of things have happened.  I'll post on them later as I get pictures done, thoughts together, etc., but today was a big day for me.  Today, I went back to school, spring semester, to get through one more semester of clinicals.  So far, this has been not one bit easier than last semester was when I found the strength to return in the first place. It's actually harder because I spent a couple of my Christmas break weeks sick with different things, and right now I am just feeling run-down and exhausted.

But like a new friend of mine said, "Not trying to play was never an option."

So today, I went to school and tried. I almost fell asleep several times (and that was on the stimulants I have prescribed) and I wondered on about two dozen various occassions, "When did we ever cover that?"  (Answer: "Duh, Amanda, when your brain was in a zillion pieces after your car accident.")  I left feeling inadequate, unprepared, and too weak mentally to get going in our only 5-credit hour clinical (aka, this class counts, and for a lot!)

Tomorrow, I'll try again, and I will next Monday, too.  And even when I have my first clinical - 12 1/2hours with a one hour drive each way - I will continue to try with all of my heart.

My plan is, if I try my hardest until our first exam and if I just cannot grasp all the information when I'm suffering with this much pain (the last 3 weeks have been unbelievable), then I will drop the course and wait to start Geriatrics/Rehab in March.  It's a full clinical day and two days of lecture, but after a break of a few weeks, it shouldn't be anything to worry about.

But I'm a pusher, I'm a trier, nothing unlike me there.  Just this time, this is a bigger try than I like to have.  This is a try out of my comfort zone, but try I still will.

Tonight, I felt like coming home and ripping my biggest class out of my schedule but then I thought how carefully it was placed there probably by God himself.  I was able to get a coveted seat in the program, I was able to get my 1-day (vs. 2) clinical, and although it's too far to drive to, I also nailed a rare spot at the Cleveland Clinic - a wonderful place to learn.  This goes for 7-8 weeks and then I begin the next rotation, and I'm balancing 2 online courses on top of it.  Online classes have the technology now to accomplish anything you can in a classroom, which means "online classes are such a joke!" no longer applies.  In fact, I wish I was only taking clinicals and no other classes because it's a lot to balance.  Or the comparatively easy road - just online classes and no lecture/clinical.  Will I ever feel "up" to clinicals?  I really want to hope so!  And by all means, if I had that promise in front of me today, I'd stop what I was doing, move this clinical out of my way to take later, and do whatever else I could to fill the time between then and now.  But I'm a realist.  I can't sit and shovel the same classes around and around in circles for the end of time.  I sort of did that with Human Physiology.  A poorly timed class (literally and figuratively!) and a terrible professor left me with two "withdrawls" on my transcript, which anyone in acadamia will warn "Withdrawls are the curse!" but really, if you're holding a strong GPA, employers don't really care.  At least in this field, my field, nursing.

I should have known when I had a nice week or so during break that it would be gone soon.  I did know it, though, I really did.  It was so amazing to feel capable of breathing air in a somewhat sustainable pattern, and I tried to hold onto those moments until spring semester would dance before my eyes.

So today was Day 1.  What I really want to do is scream, "Okay, I DID it, I TRIED!!! Are you HAPPY now?!?!?!" as I fiercely throw my course materials to the wind and literally remove my name from the roster.  BUT.  The word try is inspiring me, as are the words of my friend Tom Golarz, so I will try.  Like it or not.  And I will try tomorrow.  Over the weekend.  Monday, and then Tuesday, first clinical.  More lectures, clinicals, then Exam 1.  Then we shall re-evaluate all the components, all the issues, all the pros and cons.  Because if you left it to me, I'd follow my heart.  I'd have taken this course a year ago and might be dead from what all these strenuous courses have stolen from me, but at least I'd have the one thing I know I worked harder than anyone else in the world to obtain. 

And even if I don't have that, I do have the one I know God made just for me, and quite honestly, that's the only thing I need.  God, and my soulmate. 

Does that make all the previous irrelevant?  No!  Would I be lost without what I believe is my true calling?  Yes!  The degree to be a nurse is a huge need as well, something our society interlaces with achievement, success, and in my case, safe patient care.  Nurses are vital to healthcare reform, for spontaneous nursing care, to perform in-depth techniques, to mediate, to guard, to give hope to the hopeless.  One day I'll get there, but for the point I'm trying to make here, I can't say my life honestly depends on whether or not I take a few more courses to get me a license to get me a job.

We all can make someone smile every day. 

We all can do something big every day. 

Isn't that what matters most?

We'll all be okay.

Last year, this year

2009 wasn't the worst year ever, but it wasn't the best either.  I'm all about reflecting and want to give the year a proper goodbye, an adequate tribue to the time of my lifetime I spent in its grasp.

In 2009...
I hit the wall hard.
I left babysitting to take up nannying.
I went to Disney World with my parents and sister!
I lost my precious Nana.
I almost got another puppy.
I did make one cent of government-taxed income.
I tried.
I upgraded to a flat screen TV and Blu-Ray player!
I bought a new desk that I absolutely love.
I did not scrapbook.
I did two separate runs of physical therapy.
I was hospitalized twice, went to urgent care once.
I went to 93 medical appointments.
I inserted my first IV.
I experienced pediatric and obstetric nursing.
I failed a paper.
I had two car accidents in one day.
I found a name for the pain.
I went to Florida with my mom.
I had a total of seven different carseats in my car.
I bought three Coach bags and received one for an Easter gift.
I cried harder than I'd ever cried before.
I had too many panic attacks to count and three or four nervous breakdowns.
I made out.
I attended one kindergarten graduation, one college graduation, one awards ceremony, zero weddings, one funeral, and several birthday, movie, and game parties.
I had my birthday party/dinner at Bravo! Cucina.
I tipped one waitress less than 20%.
I missed someone thousands of miles away.
I sold a ton of things on Craigslist and gave lots of things away on Freecycle.  (And bought/picked up lots, too!)
I discovered oncology nursing.
I promised I would not watch American Idol.
I watched every episode of American Idol.
I had a little penpal.
I fell even deeper in love.
I saw Santa twice.  Three times if you count my uncle donning a Santa suit.
I completed more pre-transplant tests than I ever had before... then my insurance denied progression.  Good thing: my liver is not that bad yet.  Bad thing: waiting some more.
I watched someone shatter my heart and still try every single day to put the pieces back together.
I was "ill" sick (not directly related to my chronic conditions) six times.  (One time in January, one time in the May, and four times during Fall semester)
I went to four new doctors.
I smiled.
I adopted a precious little girl in Nicaragua.
I savored.
I fell asleep with a newborn in my arms.
I pleaded.
I cleaned up puke, poop, pee (all both dog and human!), blood, wine, and even the entire inside contents of a ripped-open Beanie Baby.
I purchased nothing on the shopping channel but a huge amount of things online.
I overdrew my checking account three or four times, all accidentally of course.  One of the times, I used crying, relentless begging, and a few references to get the fees removed. Oh, and I promised to start keeping a ledger. I have kept every other promise I've ever made in my life. ;-)
I was fired, and I quit.
I endured.
I made many big decisions.
I went to five concerts (two FFH, Brandi Carlile, Taylor Swift, Colbie Caillat), one Disney on Ice, two or three Cavs games, one Broadway play (Wicked), and one Akron Aeros game. 
I lived.
I loved.

Seemingly not too bad of a year, but the heavy stuff overshadowed any glimmer of hope.  Illness.  Death.  Pursuing something outside of my strength.  Anxiety.  Changes.  Second guesses.  So in 2010, I hope things start getting better.  They could get worse, yes, but I think this is the year I need to build the bridge I need to get to the other side.  I'm feeling really optimistic.  I'm also feeling scared beecause I know 2009 about killed me, and 2010 will be even more intense, but that's the way it has to be if I ever want to get out of this rut.  So I'm feeling optimistic, but scared out of my mind.  Not so much scared of the unknown as scared how I'm going to get through.  But I always do - I have God, a fiance, an amazing family, fabulous friends... if nothing else, I have so much support behind me.  (I am also feeling grateful.)

In 2010...
I will bust my butt completing 2 semesters of school/clinicals and whatever I decide to do during the summer to "advance my education" (aka, graduate)
I will make a definite wedding date that we really can commit to.  (Health insurance, money, a place to live... it will all come together.)
I will study healthcare in Ireland or complete a summer RN externship.
I will make more time for myself.
I will learn to budget better.
I will regain the memory I haven't had since the car accident.
I will continue to love life despite its challenges.
I will live, laugh, cry, smile, travel, read, help, yearn, see, want, make, go, need, give, build, share, and hope.
I will transcend.

And this is that crazy miracle called life.

One. day. at. a. time.

Heaven is the face

Heaven is the face of a little girl
With dark brown eyes
That disappear when she smiles.
Heaven is the place
Where she calls my name
Says, “Daddy please come play with me for awhile.”

God, I know, it’s all of this and so much more,
But God, You know, that this is what I’m aching for.
God, you know, I just can’t see beyond the door.
So right now...

Heaven is the sound of her breathing deep,
Lying on my chest, falling fast asleep while I sing.
And Heaven is the weight of her in my arms,
Being there to keep her safe from harm while she dreams

And God, I know, it’s all of this and so much more,
But God, You know, that this is what I’m longing for
God, you know, I just can’t see beyond the door.

But in my mind’s eye I can see a place
Where Your glory fills every empty space.
All the cancer is gone,
Every mouth is fed,
And there’s no one left in the orphans’ bed.
Every lonely heart finds their one true love,
And there’s no more goodbye,
And no more not enough,
And there’s no more enemy.

Heaven is a sweet, maple syrup kiss
And a thousand other little things I miss with her gone.
Heaven is the place where she takes my hand
And leads me to You,
And we both run into Your arms.

Oh God, I know, it’s so much more than I can dream.
It’s far beyond anything I can conceive.
So God, You know, I’m trusting You until I see
Heaven in the face of my little girl,
Heaven in the face of my little girl.

Written by Steven Curitis Chapman after an accident killed his 5 year old daughter last year. 

This song (and story) is especially striking to me because his beautiful little girl could have been me... in fact, it was me... only I lived to tell my story.  Lived to come up with questions, lived to cry myself to sleep, lived to realize life is not fair.  But I guess when the children don't make it, it's the parents who take on the story, questions, tears, and realizations. The agony of it all.

 Here's the end of my story...

Heaven is the face of a little girl
With dark brown eyes
That illuimate the world
Heaven is the place
Where she is now free
Where it's always enough, she'll have no tears
Only life

Heaven is the sound of her sighing in peace
Lying on my chest, rocking her to sleep as I sing
And Heaven is the air she can finally breathe
She's found the answers and all her hopes fulfilled

Heaven is a sweet, sunshiney day
And a thousand other little things I miss with her gone
Heaven is the place where she waits
She'll take me to you
One day,

       right into Your arms

The Bottom Line :: N30020 Clinical Journal Entry #15

This week was my 2nd week returning to nursing school after my 1-year "health hiatus."  Another 4 hour lecture and of course on Tuesday, and another day at the hospital on Friday.  Last week was full of orientation, procedures, class projects, etc., so it was nice to actually have patients today.  Apparently assignments were switched and we're on the "Adolescent" unit for the first part, followed by what we call "the Little Kids" unit.

To be completely honest, I was not excited to be on the adolescent unit.  I've never had a patient in his or her teens or tweens, and while trying hard not to judge something I've never experienced, I just don't have an interest in it.  So I was picturing a braces-clad, iPod-tethered, whining "adolescent" when I heard about our unit switch.  

But the heavens saw me in my little white student nurse uniform when my instructor gave me a 2 year old.  

This was going to be a good day.

Apparently, the little kids' unit must have been in overflow because of our 8 patients on the unit, almost half being toddlers or preschool-aged.  Unfortunately, the unit is in the middle of some kind of changes or moving, so the 10 of us joined the RNs and 2 new nurse orients in taking care of 8 kiddos.  We were "paired" with a peer, and there was nothing to do at a few points during the day, but it worked.

Today's assignment: R, in for a nephrectomy. Lower percentile height/weight.  Diagnosed with congenital atrophic kidney with grade 3 reflux.  Preexisting hypospadias, congenital chordee.  In simpler terms, [and if you are scared of penis mentioning, you might want to skim for a little.....] R has one kidney that is too small.  Too small, in fact, that the urine backs up into the kidney.  It's kind of complicated, but the human bladder has more pressure than the kidney, so the back flow in case like R's causes much more pressure than the kidney is made to handle, ultimately damaging the kidney.  As for the hypospadias... At birth, normal male genitalia has the urinary meatus (opening) at the tip of the penis, but with hypospadias, the opening is abnormally placed and is generally repaired when the baby is a little older.  R's congenital chordee is a result of his hypospadias, and that just means that his penis curves downward.

In discussing with his family, it turned out that little R was born with the hypospadias and chordee.  The doctor advised surgical repair around 18 months.  When they were re-evaluating him at that age, the doctor was surprised to also discover the condition of his kidney. Of course, removing the kidney took priority over penile reconstructive surgery, so it was removed yesterday, laparoscopically.  (Remember, the majority of people have two kidneys, so although the remaining kidney will work harder, it will hopefully continue to be healthy.)  R did well in the surgery and the doctors will fix his other abnormalities once he recovers and is doing well.  His specialist explained how common it is to have some kind of kidney/urinary problem paired with hypospadias, so that's the association.

The goals of the day were to remove R's Foley catheter, handle his pain via Tylenol with Codeine, remove his IV, and wait for him to urinate.  (A patient cannot have a Foley removed and go home without first urinating.  It's protocol.)  Well, little R decided he wasn't going to urinate.  He decided he wasn't going to drink either.  Nice.

Our shift is 0700-1730.  Between 0800 and 0900, I removed R's Foley and IV.  Both involved kicking, screaming and flailing, but we made it through.

You know, it's funny...  I remember the first time I ever gave a shot to a patient - it was so weird because as I stood there, syringe in hand, clinical instructor at my side, a thought came to me.  As a nurse, I'm going to have to hurt people.  I pondered it, distressed, until I realized we only hurt people if they'll be much better off for it.  These kiddos have to have IVs and Foleys and surgeries, and they have to drink certain things and go scary places, and it's mean and terrible, and sometimes it feels so wrong.  Anytime I have to bother a child for anything, I can't help but picture myself in that bed by the window, watching Sesame Street, clinging to my "lovey" for dear life, hoping a nurse wasn't going to come back in.  But they did.  And we do.  Because at the end of the day, it's all to help these precious babies.

Anyhow, back to R.  We pushed about a zillion popsicles, and another round of pain meds induced a nap. Kids always pee in their diapers during naptime, right?  Well not R.  It seems like all we did all day was keep checking to see if he voided yet.  There was nothing else to do, and I was bored out of my mind.  We did the playroom, parent teaching, Child Life consulting for support on his major activity restrictions as he recovers... we covered all of our bases.  Still no pee.  Not even a little.

I couldn't help but observe R and family.  The look on Mom's face said it all.  Her child was going to have a simple surgery until they found out he was in kidney failure.  She had likely been awake for days straight, and she was agitated with everything.  Every defense in the world was up because this was her child, and he was hurting.  He was broken and there was nothing in the world she could do to fix him.  R would scream and kick and cry as I pushed his Tylenol with Codeine into his mouth with a syringe, and Mom looked like she was never going to get used to that different cry, that cry of desperation and fear that her son had probably never expressed before.  As for R, there were times when I mentally imagined myself as him simply because I couldn't not.  Hooked up to tubes and wires, eating new foods, listening to weird sounds, seeing more people than he's ever seen in his entire tiny life... It's a nightmare. Then I remembered how the two things I trusted the most - Mommy softly singing to me, rocking back and forth, and of course Dad's big strong arms - were, for the first time in my life - not enough.  What happens when everything you've ever known seems so, so small to this new, terrifying world you're being shoved into?  Exactly.  By midday I had connected with patient and family.  They were so grateful and couldn't believe how R was opening up to me.  Yes, I do well with kids, but this is different.  The bottom line here is that I have walked their paths, and that was the security this family, felt from me.  I was one of them, one like their little boy.

Although I liked them, I was also secretly hoping R would pee by noon or something so I could get a new admit - hopefully something more interesting, too!  But no.

R did not pee until about 1500.  

Yay for R!  We had him discharged in no time, but it was almost time for post-conference, a new patient wasn't up yet.... so we were just bored. Again.

But little bit of humor here... R's room "neighbor" was in for - get this - swallowing a pirate coin.  Almost 4, he loves pirates and somehow swallowed a "pirate coin." Poor little thing had to have it removed because it wouldn't pass.   He's also excited about his "pirate birthday party" this weekend and kept asking for his coin back.  Will we see him next Friday?  Oh, it's possible...

Kids.

Anyways... during my "boring times," I of course chatted with my fellow peers and the nurses.  I love hearing people's stories, but heart skipped a beat when my friends said they had a teen in with pancreatitis but he also had cirrhosis as a result of congenital liver disease. "He's really a cool guy, you should go chat with him!" my friends urged me.  (They probably felt bad for me standing around for half the day!)  So in I went.  I wasn't sure what to say as far as how to relate my connection with him, so I waited, determined not to be pushy. We just chatted and talked about life for awhile, and when it came up, I asked him who his specialist was.  I was pretty sure this was my opening because my liver doctor is the absolute best pediatric liver specialist at the Clinic, probably at least in the region or maybe the country, and she is no longer all-GI but hepatic patients only.  She's phenomenal, and I think she's the only totally, completely liver-only peds doctor in the entire CCF network.  Anyways, he said her name, and I replied with, "Oh great, she's my doctor too."  Suddenly that invisible "you have no idea what I'm going through" fell to pieces and we started conversing like we had been best friends for years.  We each shared our histories, our prognosis, our treatments, our frustrations.  We talked about procedures only we could understand and compared our list of similar medications. 

We'll call my new friend B.  Apparently B hasn't been able to go to school for the past couple of years and is lonely and bored. "I can't do anything," he told me, to which I asked him, "The fatigue, right?"  He grinned.  I had broken the practitioner-patient wall.  Maybe too far, but I couldn't help it.  

At the end of the day, I said goodbye to B and I secretly wished I would see him again.  I told him I'd be thinking about him and you'd better believe I will.  This is where I will be having trouble with attachments.  I've never met anyone young with liver disease and I can't express how comforting it was to be with him.  It's like waiting forever to feel like you belong and then finally feeling you fit in.  He did, too.  Again... Bottom line?  I was one of them, one of him.  (Oh and I was a little mad at my instructor for not giving him to me as my assignment.  Ahem.  But maybe that's a good thing?)

So back on track... finally, 1630.  R went home, remember, and I told B goodbye.  Post-conference is just an hour of talking about your patient, pathophysiology, meds, treatment, plan of care... blah blah blah.  I usually like post-conference, and today I did, too.  Until B's student nurses explained what was wrong with him.  

I didn't know there were dots to be possibly connected that far away from the truth.  Where in the world were they blaming x-symptom on x-condition, or x-condition as a result of x-medication that according to them, the doctor should not be prescribing.  My jaw was on the floor, and I pretty much had to consciously tell myself not to butt-in.   He was not my patient, and it would be a little tacky of me to steal their thunder anyways.  But I was sick, seriously disturbed.  How did I, talking to the patient for maybe an overall total of 20 minutes, know more about his life, social/emotional needs, fears, and future than TWO people who had been with him literally all day?  They missed so much, completely wrongly described liver disease/portal hypertension-induced conditions that I myself have.  Then they decided to tell us that he was on the liver list, but he probably wouldn't get one because, due to his specific disease, his liver might fail all over again. Umm?  Sorry guys, that's not how they do transplant priorities.  It's a number and a system, and who are you to say that your very end-stage patient is "probably really low on the list"?  God forbid you told the patient your opinions on how organ procurement an transplantation must operate.  

What I learned from that short experience is, how often do we entirely connect the wrong dots?  I thought about it later, and I realized that if I didn't know about the disease, there is no way in this world I could see my personal list of procedures, meds, and diagnoses and connect them into the least form of common sense.  It's a messy, messy disease, and I only know so much about it because I ask my doctor questions after questions and read journals, books and well, live the life every single day.  So who am I to judge them?  Perhaps their technique behind "how can we make this make sense?" seemed to work for them, but just not for me.  And not for B.  Meeting him today was one of my highlights of nursing school and my nurse technician job, too.  He seemed to be thrilled, as well, to find someone to connect with, and was just grateful to find our common bottom line.

This nursing thing is the hardest thing I've ever done in my life, but sometimes, it just feels so right.  It feels like I'm answering my heart and soul's calling, and well, isn't that the bottom line of life?

22 years ago today…

 

... I entered this world!  To celebrate, numerous things have occurred...

First of all, Mom and Nikki surprised me with a huge batch of these lovely birthday cupcakes!!  Then there was the cell phone.  I was doing homework most of the day so I had the ringer off, but I got a zillion birthday text messages and voicemails from everyone who matters most!  But it was the email inbox, I'll have to say, that was most annoying because almost every website I've ever been to in my life had some kind of message to send, whether it was a boring "Happy Birthday!" or an overly peppy "Happy Birthday! You're our #1 Customer! Use this coupon to save 20% off your next purchase!"  The real mailbox had a plethora of similar coupons all week long, and hey get this one - Hallmark actually sent me a birthday card (with a coupon inside, of course).  (And as a sidenote here - that's the least they can do since I reached platinum last year.  Yes, I spend that much at Hallmark!)   But anyways, my favorite part of the day, as it is every single year, was the cards.  I'm a letter-handwriting, card-giving, day-making kind of person and for some reason I've always loved the cards more than the gifts.  They mean more, and they last forever.  :)

So.... don't mind if I do...

Happy Birthday to Me!!  :)

Big words

Words

I like big words. They carry with them an opportunity to better claim a more distinctive thought, feeling, or thing.

In the medical world, though, the need to be more distinct, specific, and exact can be a blessing or a curse.  It's good if you're a top-notch specialist needing to deeply articulate the intricacies of the human body, perhaps frustrating if you're a first-year med student trying to memorize even the shortest medical words.  It's good if you're a patient wanting a doctor to knowledgeably navigate the convolutions of your heart, yet disappointing if you're wishing to get better and receive a troublesome test result in several verbose words.  The longer the word, well, you get the idea.

My words of late have been both big phrases and big words.  Patent ovale foramen. Primary sclerosing cholangitis. Thrombocytopenia.  Chronic thrombosis.  Innumerable esophageal, gastrohepatic ligament, peri-splenic varices.  Massively dilated.  Infarct.  Splenomegaly with massive collaterals.  Pulmonary arteriovenous malformations.  Portal venous hypertension.

I'm going to vote for despising big words lately.

But you know, it's not just the big words.  Some little words and certain small phrase shave enough power to silence an entire room.  

She's sick.  End-stage liver disease. Broken.  Confusion. Paralyzed by fear.  She's crying.  

Yes, sometimes silence is truly golden, especially when a record spins over and over and over with what should remain unthought of, unspoken.

Today was one of those days.

Yesterday was one of those days.

Everyday lately is just one of those days.

Two+ Weeks

Rewind to the other Tuesday, the day after Memorial Day.  The worst day of my life, and not because I had a not-so-great visit with my liver specialist.  After I met with Dr. Hupertz and we discussed my upcoming procedure and my progressing end-stage liver disease symptoms (like this new phase I'm in with waking up 2-3 times each night for a few hours each), something happened (I'll spare you details) that turned my entire world upside down.  I spent Wednesday in bed unable to move.  It was beyond terrible.

That Thursday I went up to Cleveland for an IV-contrast CT scan of my abdomen, typical liver test, no big deal.  Well except the Barium - 2 huge bottles of that nasty chalky stuff.  Okay, not that bad.  Honestly, the results are always worse than the actual test.  But I'll get to that later.

The weekend came and went, and Monday was Cardiologist Day.  In part of my transplant workup, I had an abnormal EKG.  The solution to that was a referral to go see my John Hopkins-trained, award-winning cardiologist at the Cleveland Clinic to check it out and hopefully give me cardiac clearance.  I went and saw her a few weeks ago.

Good news came first... the EKG was nothing to worry about.  The abnormality was with the T-wave, which represents the repolarization of the heart.   A T-wave abnormality like mine usually indicates an issue with the body's metabolism and Ph levels.  Many things can disrupt the body's metabolism (and thus Ph level) - from anxiety to serious diseases.  Even though my previous EKGs were normal, Dr. Prieto said the reading was nonspecific, and the abnormality was so subtle that a cardiologist reading the EKG might not even pick it up.

The bad news, however, was the whole issue with cardiac clearance for the liver transplant workup.  There were two problems, both diagnosed by agitated saline intravenous injections during echocardiograms ("echos") - pulmonary arteriovenous malformations (Pulmonary AVMs) and a patent foramen ovale (PFO).

First of all, I've known about my pulmonary AVMs for a few years now. Uncleansed blood normally goes from the pulmonary artery (right side of the heart) into the lungs to be filtered, and then it flows through the pulmonary vein back to the heart where it is then set off to supply the body with clean, oxygen-rich blood.  In the case of PAVMs, or right-to-left shunting, tiny perforations surround the lungs' capillary beds, so uncleansed blood bypasses the gas-exchanging alveoli to go directly into the pulmonary vein (left side of the heart) without ever getting filtered.  In short, blood doesn't get a chance to get its CO2 exchanged for O2 so toxins circulate and cause fatigue and shortness of breath, among other possible symptoms.

Secondly, there is something called a patent foramen ovale (PFO), a defect in the atrial septum (the wall between the two atria, or upper chambers, of the heart) where instead of being a solid wall, there is a little flap.  Everyone is born with a PFO, but as the person grows, they usually (75-80% of the time) close on their own.  Even if they don't close, they're usually not problematic.  However, there is a newly developing theory regarding transplant patients with PFOs.  Scientists are seeming to think that somehow PFOs in transplant patients are directly correlated with IVC (inferior vena cava) thrombosis, which is related to prevalent strokes and other types of embolism.  The theory also notes the commonly seen scenario of a thrombus (blood clot) forming in the right side of the heart, going through the PFO, and ending up in the left chambers of the heart where it can become an embolism, going out to the body.  The thrombi alone aren't as much as a problem as is the possibility of embolism (the clot traveling until it plugs up another vessel).  The ultimate embolism is the type that gets lodged in the vessels of the brain, directly causing a stroke. 

Although we knew about the pulmonary AVMs, the doctors signing off on my previous contrast echos never mentioned a PFO.  To be mostly certain I didn't have a PFO, Dr. Prieto suggested a new echo.  If I had a PFO, she would do a heart cath to fix it.  If we didn't find one, it was safe to assume I likely didn't have one.

So fast forward to last Monday.  

Monday morning, I woke up and the sun was shining.  Then I checked my email and saw a message from my specialist.  The CT results from last Thursday were here.

Words.  Lots of words.  Big, huge words that meant bad, bad things, and tiny words that spoke for themselves.

Innumerable esophageal, gastrohepatic ligament, peri-splenic varices.  Left renal vein is massively dialed.  Spleen measures 21cm in length.  Some splenic infarction (tissue death due to loss of blood supply).  Cirrhosis.  Portal hypertension.  Portal vein thrombosis.  Marked splenomegaly with massive collaterals.  Spleno-renal shunt.  Multiple large esophageal and paraesophageal varices.  Portal venous hypertension.

As if that isn't a great way to start a week.

Anyways, next up on Monday was a trip to Cleveland to see Dr. Prieto again, this time for the echo.  We did all the workup, the echo, the IV of agitated saline bubbles... thank goodness, there was no PFO.

Then I get a phone call.  My transplant coordinator's scheduler saw that I was up at the Clinic that day and wanted me to come see her to coordinate our schedules so we could book the pre-transplant "people" appointments.  You know... meeting the surgeon, anesthesiologist, social worker, infectious disease physician, psychiatrist, financial counselor... all kinds of excitement.

Needless to say, on Tuesday, major napping occurred.

Wednesday ... Cleveland again, surprise surprise.  Back to the high-risk OBGYN to get a repeat test of a test her office "misplaced" (Not even kidding.) ... a test the transplant phase 1 requires.  Anyhow, conveniently (ha) she also found out my newly-placed IUD (to prevent cancer, not babies.... long story) was "hiding" and wanted to do an ultrasound to make sure it was intact and where it was supposed to be, not perforating my uterus.  Although at this point, something like that wouldn't really surprise me.  Anyhow, she did the ultrasound and good news, the IUD was just hiding, no big deal.  Then my doctor went silent, stepped back, and whispered, "Wow...."  So of course, I wondered if that's was good or bad, and I asked what she saw.  She said my ovaries were completely filled with developing eggs.  She couldn't believe it either.  Of course that did not make my day, seeing that she assured me during the last visit that there was no possible way I was in a state of health to carry a child and survive.  Sure, part of me is relieved that I am capable of producing eggs -  after all, with so many things wrong, I wouldn't be surprised if I suffered from infertility.  However, each and every one of those precious, amazing things... the things my body produced (a job it can actually do right!) will never see the light of day.  That's what hurts the most.  Deeply.

That was pretty much the end of Wednesday as I didn't feel like doing anything else.  On the way home - the way I've driven a million times before - I completely missed my highway exit and ended up 25 minutes from my house way across town.  Exhaustion + being a basket case = seriously fun times.  That night, Jonathan and I went to his sister's and chilled till we were both ready to fall over asleep.  In the morning, on Thursday, my mom picked me up and so kindly drove me up to Cleveland again, this time for a series of ultrasounds, for the transplant workup and also just as regular observation for my liver disease.  No big deal, just annoying I guess.  I laid and watched The View while the tech about killed me with the transducer, but that's a different story...  Just part of the job of being sick.

It was hurry-back afterwards since I had an appointment with my (amazing) therapist at 1pm in downtown Akron.  I feel we really had a good session.  We covered a lot of things, and it was great to get everything off of my chest.  She can always see where I'm coming from, and she gently introduces new perspectives and ways of thinking about things.  She's saved my life a zillion times just by keeping me from ending up in the ER with a panic attack.... like the good old days.  (Thank God we're beyond that now...)

After therapy, I had a massotherapy appointment with a new massotherapist.  It was my 2nd attempt to replace my current massotherapist, and as usual, to no avail.  Thursday's massotherapist was amazing at finding the pressure points, but she didn't seem to know how to release them.  I liked how she kept talking to a minimum and was very rhythmic in her technique, but after 1/2 hour, I was wishing it was over.  If you're used to massotherapy, you know how you need the pressure points released, and without that, well, I felt like she was trying to kill me... slowly and painfully!  I think I actually underestimated the "damage," as I was on muscle relaxers all weekend.  So the search is on again....  

Then came Friday.  Although exhausted from a few weeks of non-stop appointments and overwhelmed by a long week, Friday was just another day in the week for me.  More of the same.  This time, a visit with my PA-C, Phyllis to check my thyroid since a test came back abnormal.  She had her nurse call me to move me to a time where we would have more time to talk, and that we did!  I love her, and we just sat and chat for about an hour.  Life, health drama, whatever.  She's so easy to talk to.  Anyhow, she said the thyroid test wasn't really abnormal after all but had new labs done just to make sure, although unlikely.  To that, I told her that I sort of wished I did have a thyroid problem causing my frustrating all-day, every-day extreme fatigue, because then maybe it would be treatable.  But nope, she confirmed what I knew, it was more than likely just my liver making me so exhausted.

Then, while in her office waiting for the nurse to come draw the labs, I got a call from my transplant coordinator's manager.  She told me my insurance had decided to deny coverage of a liver transplant since my MELD score was 9, and coverage starts around 10-11-12.  At first I was frustrated because of all the tests I've gone through, obviously now in vain, but then I realized I should be thankful.  And I am.  I'm not bad enough to get a living-donor or deceased-donor yet.  So, so thankful.

Here & Now

So that's been my life lately.  Sprinkle a few "fun" things in, like Bryce's first T-ball game, his kindergarten graduation, and some new nanny job interviews, and that's been it.  

And a little "news" for you... Due to irreconcilable differences, I sadly dropped my last nanny family (with Itty Bitty & Baby Itty Bitty) and interviewed last Saturday with a precious little 3-year-old, Little M.  I got the job (which I soooo desperately wanted), and I start Monday.  I'm so excited.  Sometimes you just feel it when you find a perfect family to "join," and I know this is my match.  I'm so ready to start - I have Pinkalicious and Fancy Nancy and a wagon for the zoo!! 

Saturday (yesterday), Jonathan and I went to a wedding, and before that, I interviewed with the parents of a 7mo old little boy, Baby Blue.  They need an as-needed sitter for a few outings a month, and I got that job as well.  I start on Monday after I leave Little M's.

It's no wonder I'm exhausted, but I've found if you don't keep busy with non-hospital stuff, it's so easy to get into the patient-patient-patient mindset.  I'm not sure if it's the healthiest thing to do, but it's working for me for the time being.  Go, go, go, go, go.  No time to sit at home and cry, you know?  Plus my "kids" give me life, they truly do.  They inspire me to keep going, to keep fighting, to see the world for what it is in the eyes of a child.

So what's up next? I'll be in the hospital on Tuesday (more on that later), so I have Tuesday and Wednesday off.  Then I'll be with Little M for the rest of the week.  I have 2 appointments this week, but they're "easy" ones.  (Even though one is in Cleveland)  It'll be nice to catch a breath, even if I'll be doing so while completely zoned out on anesthesia.

Everything is so complicated.  Simplicity is all I want right now.  A break.  A vacation.  (And to think I just got home from one!!)  

The Moral of the Story ... The Fact of the Matter

But you know who is not one of complexities, big words, and confusion?  Our God.  He's big and awesome and strong, and we are blessed that He holds our fragile hearts in His all-knowing, all-loving hands.

At the start
he was there, he was there
In the end,
he’ll be there, he’ll be there 

And After all our hands have wrought
He forgives 

Oh the Glory of it all is:
he came here
For the rescue of us all
that we may live
for the glory of it all
for the glory of it all 

All is lost
find him there, find him there
After night
Dawn is there, Dawn is there 

After all falls apart
he repairs he repairs 

Oh the Glory of it all is:
he came here
for the rescue of us all
that we may live
for the glory of it all 

oOh he is here
for redemption from the fall
that we may live
for the glory of it all
oh the glory of it all
the glory of it all
oh the glory of it all 

After night
comes the light
dawn is here
dawn is here
it’s a new day
it’s a new day
everything will change
things will never be the same
we will never be the same
we will never be the same
we will never be the same
we will never be the same 

Oh, The glory of it all is
you came here
for the rescue of us all
that we may live
for the glory of it all 

Oh you are here
with redemption for us all
that we may live
for the glory of it all
for the glory of it all
oh the glory of it all 

Be still and know that He is God.

The man who saved my life

It was bittersweet last week when I picked up the newspaper last week and saw this on the cover.

The dedicated, passionate doctor who saved my life is retiring, and for that, the world will suffer a great loss.  However, it will also be a better place because of all he did during his practicing years through the children who live on because of his touch, the doctors and nurses who were honored to learn under his inspiration.

I only saw Dr. Stone once, but he still saved my life.  In the most literal sense.

When, at barely 5 1/2,I was the medical mystery of the month, presenting with a myriad of serious and perplexing symptoms, it was Dr. Stone who made milestones in my case.  He was the one who had the bravery to test a once-vivacious little girl for leukemia, the keen skills to relate her symptoms and test results to liver disease, and the wisdom to refer her family up to Cleveland.

He had the boldness to scold my father for asking if what I had was cancer right in front of his already-petrified, extraordinarily-alert daughter.  He had the patience to help our family through the time, to bridge us to the next "step."

Looking back, I remember being in his office, scared out of my mind. I remember he and my parents telling me I was going to have to stay in the hospital right then, as in, Yes, kid, you just came here for a doctor visit, but we were just kidding.  You're not going home!  I remember having no idea what was going on, wondering why I was being poked and prodded and stuck in a cold, dreary room with Sesame Street (a "baby show") playing on the TV.  I wondered why in the world this guy was doing all of this to me, oblivious that he was really doing the best for me.

Dr. Stone may not be associated with my happiest memories - far from it, in fact - but he is associated with my mental list of great doctors who truly care on all levels and won't take "unknown diagnosis" for an answer. 

He truly loved his patients.  

He saw the futures many other doctors would not have ever dreamed possible for us.

Pediatrician hangs up lab coat
Local doctor retires after 42 years of practice, leaves legacy of ‘unparalleled’ care

By Cheryl Powell, Beacon Journal medical writer; Published on Tuesday, May 26, 2009

No one ever calls Joe Ritz ''Joey.''

No one, that is, except Dr. Robert Stone.

Just as he does for many of his patients, Stone came up with a special nickname that only he uses for the 18-year-old Tallmadge resident who was born with a rare liver disorder.

Many times, Stone showed up unexpectedly at Akron Children's Hospital on his days off to check on Ritz. And on more than one occasion, he met Ritz in the emergency room or in the labs to check on his patient.

''He makes you feel special,'' Ritz said. ''He makes it real easy to talk to him. It's like talking to a grandfather more than a doctor. He makes the big hospital words seem like small kids' words.''

After 42 years and many nicknames, Stone, 72, recently retired from patient care at Pediatrics in Akron.

The Akron native is continuing his administrative role at Akron Children's, where he serves as associate chair for Community Affairs and as a member of the board of trustees and several committees.

But fellow doctors, hospital leaders, patients and their parents say Stone leaves behind a legacy of caring for children and their families with a level of personal dedication that's hard to match.

''His service and his leadership to Children's, quite honestly, in my mind, is unparalleled,'' said William Considine, president and chief executive of Akron Children's. ''We're a better place because of him, I can tell you that.

''You can't go to a grocery store, a drug store and even in the community without running into some family that has been cared for by Bob Stone.''

Special care

Many of the tens of thousands of children and families treated by Dr. Robert T. ''Bob'' Stone over the past four decades grew to see the highly regarded pediatrician as their friend.

Judi Carman of Green relied on Stone to help her care for five special-needs children adopted by her and her husband, Jeff.

Katie, or ''Katie Cakes,'' as Stone called her, was born with a rare genetic condition as well as serious medical problems caused by her birth mother's crack use.

The girl died when she was 4 1/2.

Carman's other adopted children, ranging in age from 24 to 11, have a host of severe medical and psychological problems.

Whenever she had a child in the hospital and needed to leave at night to care for her other children, Stone would call her first thing the next morning with a report.

''He always took those few minutes to update me and keep me posted and make me feel included in the care and also relaxed about what was happening that day,'' she said. ''His devotion to children and their medical care and their family just goes unsurpassed. You're working with a family, and he never forgets that.''

Confronting death

General pediatricians normally deal with birth and life, not death and dying.

Stone, however, opted to specialize in gastroenterology and cystic fibrosis at a time when the average survival for children with the incurable genetic disease was less than 10 years. (Today, the average life expectancy is closer to 40.)

During his first year of residency at Akron Children's, Stone came to appreciate the role of doctors in helping young patients and their families face life-threatening conditions and death.

That year, he helped take care of a girl who died from complications caused by lupus.

''I learned a lot from that, because it wasn't only dealing with her, it was helping a family struggle with what is every parent's worst nightmare,'' he said.

Stone said he always tried to approach his patients and their families with empathy, not sympathy.

''Whatever time you get, you'd like to make it as meaningful as possible for that child, that person, and that family,'' Stone said. ''You become a part of the extended family. You really do. You get involved.''

Coping with stress

Rochelle Stone, his wife of almost 50 years, said he did a good job of not bringing the stress of his work home with him.

''The joy of pediatric practice is to see kids grow and thrive and become adults and live a nice fruitful life,'' she said. ''If you're dealing with a chronic illness segment, you help a family deal with what they're going to have to deal with. It takes a person with great insight and understanding and sensitivity. While you help the family deal with it, you can't paint a rosy picture and not talk about what the reality is. That's a real gift that Bob does have.''

Over the years, she said, he would get ''down in the dumper'' at times when a patient wasn't doing as well as he had hoped.

''He would never say who the family was, but over a situation that went poorly,'' said Rochelle Stone, the past president of the Akron Children's Hospital Women's Board. ''If there was a patient of his who was a social friend of ours, I was always the last one who would know if their child was in the hospital. He was always careful about that. I think it was a way of keeping family life separate from office life, too. It was a way for him to be able to walk away from those tense situations than to have to live it over and over.''

Stone served as director of the hospital's cystic fibrosis clinic from 1972 until 1998, when he woke up in the middle of the night and thought: ''You know what? Thirty years of death and dying is enough.''

By that time, however, the lives of his patients were decades longer than when he started practice.

He'd moved from attending preschool graduations of patients who wouldn't live into their teens to attending high school graduations, college graduations and weddings.

''You start with something that's so grim and now it's upbeat,'' he said.

During his tenure, Stone was instrumental in bringing adult services to the cystic fibrosis clinic for patients who increasingly were surviving into their adulthood, said Dr. Gregory Omlor, director of the pulmonary division at Akron Children's.

He showed the same level of dedication to all his patients, Omlor said.

''He would be available to them at all hours of the day,'' Omlor said. ''He would come in on Sundays and see the patients. If there was a procedure that needed to be done and nobody else would do it, he would take the time to learn how to do the procedure so his patients could get the needed care.''

To honor his work, Stone's brother and sister-in-law, Don and Marcia, donated $300,000 in 1997 to the hospital's outpatient respiratory center, which now bears his name.

''It's really a nice legacy,'' he said.

'New chapter'

Stone admitted it wasn't easy to leave patient care behind.

''I obviously had mixed emotions about it,'' he said. ''My basic project over the last couple years was to help transition my patients.''

His wife said much like a veteran athlete, Stone ''decided to cut back from seeing patients at a time when he was still at the top of his game and before anyone asked him to step down.

''We're at a point now where we'd like to do more traveling and have less restrictions on our daily activities,'' she said.

Thankfully, his wife added with a laugh, he opted to retire when the weather was turning warmer and the golf courses were beckoning.

''It's a new chapter,'' Stone said. ''That's the way I'm looking at it.''

Tonight

Tonight, I'm not watching American Idol or doing homework or relaxing after a long day.  I'm not working on one of my many projects or tackling my overflowing email inbox.  I'm not reading, creating, or unwinding with a crossword puzzle.

Instead, I'm staring at the blown veins in each of my arms and making a mental list of the five tests and appointments I need to schedule in the morning.  I'm missing the friends I left at school and the patients at work that I'm no longer well enough to care for.  I'm furious and frustrated that the diseased body that has plagued me so long has even become a relentless match against true love, the strongest force on earth.  

As my sister put it last week, I'm just one huge roadblock away from every dream I've ever had, every wish most people see come true.  I'm perpetually jousting off questions that have no answers, while using all of my strength to dispel the question, "Why me?"

I'm knee-deep in new and pending diagnosis (like fibromyalgia, cirrhosis-induced dysautonomia, and chronic fatigue syndrome... to name a few) while I'm just now beginning to cope with and understand the nemeses I've had for years (like primary sclerosing cholangitis and its repercussions).

In the past 33 hours alone, I've gotten an x-ray and and an EKG, two sets of labs, and I've attended three appointments.  I've coordinated a handful of steps in my liver transplant evaluation, filled up the next month and a half with appointments, and sent in three new prescriptions.  I've received two frantic phone calls regarding an abnormal EKG and low lab value, and I've worried about three upcoming procedures.  All since yesterday afternoon.

Yet the crazy part is that this story is true, and it is my life.  This is all I know.  It's my comfort zone.  And although this disgusting cage is my familiar security, I am so tired of every single part of it.  I yearn for all of the things most people take for granted.  Most nights before I close my eyes, I wish I'd be able to wake up from my sedative-induced sleep to realize these years of hell have only been a dream.  But the reality of it all?  Tomorrow never brings a brighter day.  Just tears.  More battles to fight.  Questions harder and harder to silence.

But despite it all, I keep trying.  I keep pleading with hope, begging it to stay.  Begging for a peace.  Just a tiny bit. Even if just for a few minutes... maybe an hour... or for if I dare even ask, a sunny new day.

The Nanny Diaries

FINE, I'll admit it... it's true. No matter where I go or what I do, I always get sucked back into the tight grasps of sticky, slobbery fingers. Tiny little hands that are, by logic?  Tiny. By power? Large enough to wrap around mine twice and pull with the strength of the atmosphere.

One look and those eyes just draw me in. The windows to the souls of little lives, so full of potential. So eager to learn. So thrilled to just be alive.

In short, that is how I am now back in the business of childcare.

Yet I hesitate, okay, cringe, to say "business." When it comes to itty bitties, it's not a business.  Anything but.  It's a lifestyle, a calling, a commitment to give your heart away. It's the promise that you are going to be a part-time mother, not just someone to make sure the fingers stay out of the outlets and the little mouths get fed. It's more than chasing away the monsters or going on adventures with Dora. It's not just singing away the tears or rocking exhausted little hearts to sleep.

Outside of motherhood itself, and in some cases, true, unconditional soulmate-kind-of-love, I venture to say it's the biggest love a human heart can hold. It's instinctive, logical, illogical, and swifter than reason.

. . .

When I was around 11 or 12 I took "Safe Sitter" at the local childrens' hospital. Officially certified to babysit (the card said so!), I thought I was big stuff. All around the neighborhood I'd go, certain I was the most responsible, mature sitter there was.

Looking back, I have to laugh. I'd never trust any child with myself at that age! Yes, I was mature and responsible, but 12 year olds are just kids. No amount of "Safe Sitter" can equal experience, instinct, and even critical emergency skills. But I digress... I made some serious money (umm, to a 12 year old at least... lol... perspective people, perspective!) and had fun while I was at it. I learned a lot, and plus, it was just a fun thing to do after school to earn some extra cash.

Shortly thereafter, my mom started watching an infant (E) whose family attended the same private school as us. It was kind of interesting how it worked out since my mom never really did any babysitting. She is absolutely fabulous with kids (even teaches 7 year old Sunday School!) but being a stay at home mom was always enough to keep her hands full. But anyways, little E was adorable and before I knew it, E was in preschool, and then school, and somehow it went from my mom to me being her sitter and even math tutor. :) Now she's almost 10 (!!!!!).

Meanwhile, 2003. Mom's best friend's daughter (S) has a baby (Bryce). S needs to go get her cosmetology license and I had just finished 10th grade at private school, was bored, and was ready to wrap up high school via correspondence. Perfect - what better to do than offer to babysit the little guy of my almost-big sister. S is about 10 years older than me, and growing up, every day after school, she'd walk to our house and play with Nikki and I. We called her parents Aunt and Uncle and they were even legal custodians over my sister and I had anything happened to my parents. Our families were always together, so it was like babysitting my nephew or something. Days turned to weeks.... weeks turned to months... and I had Bryce just about every day. That baby was just as much my own and I would have given my soul for that little guy. S ended up doing fab in school, graduated, and Baby #2 was born in 2005 - Declan. I returned home from Europe the end of August, and the end of the month brought the beginning of college and the birth of Declan. Although busy with school, I see them when I can, and those two little guys (5 and 3) love their Jonathan and Miss Amanda and we love being part of their lives.

2008. Jonathan and my friends have a baby girl. (PINK!!!! Finally!! lol) I sit for her sometimes and did moreso when her mom was transitioning to working from home. She's the cutest little thing evahhhh!

Soooo now we are here. 2009. Health problems getting kind of crazy. School not feasible for the time being. Never deviating from my inner habit of new "whims." Before I know it, I'm signing on to be a part-time nanny with a prospect of eventual full-time.  

I guess if I can't be making a difference one way, my soul will just find another way.

New Itty Bitty is 2 1/2 months old, and Miss Thang is 6. Two days a week + evenings/travel/whatev until summer.

Annnnd with that, I'm back in the baby business.  And this begins my Nanny Diaries... should be fun... I jokingly refer to myself as the Baby Whisperer, but I accidentally stumbled upon a book by that name on Amazon so I guess the title is already taken. They say do something you love, and I really do believe that what is right just feels right, so for the time being, here I am. I'm loving this new gig, and I will unashamedly admit that two little girls are well on their way to finding their homes in the center of my heart.  And that same heart is content to know I'm making a difference in the lives of two little girls among the world's most precious asset... children.

(And beware, I know a lot of secrets and have a lot of opinions. I also like sales. And pink. Oh and glitter. And kid art. So Crazy Miracle might just end up being the blog of me, with tales of love, nursing, art, illness, puppies, insanity, photography, links, annnnd now BABIES! and whatever else I just feel like putting on here. I really don't like when people ask me to categorize my blog - can you tell??)