Tuesday, February 7, 2017

The Road Less Traveled....

A friend at work showed me pictures of her son the other day.  He's about Babygirl's age, and he's a wonderful boy. He's kind, generous (he's the one who passed on his 'guys' to LittleMan so many years ago because he knew we only had 'girl toys' at our house!) and well-mannered.  He's a natural athelete who once actually managed to make a hole-in-one at a PGA golf course.

The pictures were ordinary enough:  Handsome young man, suit and tie, lovely young lady, formal dress, all decked out for a school dance.

It tore my heart.

Citygirl was a social butterfly and attended so many formal dances at so many different schools that I cut her off budgetarily in terms of new formal dresses. She learned to shop on the internet and switch up with friends and I have a million pictures of her in the most astonishing dresses, surrounded by beautiful girlfriends all trying (in my humble opinion, of course!) to look as lovely as she.

JuJuBee had no real interest in such goings-on.  She and her beloved were once voted prom King and Queen on a mission trip, and they nearly died of embarrassment.  It was typical of her quiet personality that this was NOT as funny to her as it was to those of us who had stuffed the ballot box.

Curlygirl went to her Senior Prom, and because it was almost the only dance she'd ever wanted to go to we went all-out on the dress.  She was lovely.

But.....Babygirl.

She is walking, and not by choice, the road less traveled.  Before her illness she was not an extremely outgoing child, but she would go with Youth Group and have sleepovers and invite friends in. She wasn't a 'girly girl' who paid a lot of attention to fashion or makeup, but she was only 11 when she got sick. Who knows, if illness had not intervened, what type of social life would have developed for her?

She is attending school online.  If asked, she says that she is happy with her social life.

But.

I've seen her dressed up for her sister's wedding, dancing and having a wonderful time.  I think it's not likely, however, that I'm going to see her in a prom dress with an updo going to a school dance.  And if it were her choice, like JuJu's, not to go, I'd be fine with that.  It just tears me to think that the choice has been taken from her.

DeeDee

Saturday, February 4, 2017

Anniversaries.....

Let's face it:  This past year has been a stinker.  2016 is a year that is generally best laid to rest.

We lost my Mom a year ago this month.

Matt had the surgery which, while un-paralyzing his leg, put paid to his ability to work (so we did without his paycheck for the last 7 months of the year while his disability application got sorted.  Good times).

Curlygirl and SqueakersDaddy separated, and she is struggling.

We put our beloved Maybelle down.

My work accidentally put me on medical leave, leaving me with no paycheck for the last three weeks before Christmas, which means NO ONE in the house got paid before Christmas.  (I got paid before New Year's but it took until yesterday to get a physical copy of that final paystub for tax purposes!)

And Babygirl has continued to fight the headaches.  My heart sinks thinking about it.

On the flip side, though, 2016 has had some sweet gifts.

BamBam was born a year ago today, just in time to bring us joy in the midst of our mourning.

I've been in contact with a lost cousin.  I like what I see - I really really really want to meet her in person.

My wonderful son-in-law has been accepted to and started at Cornell University, and I'm so proud to have another Ivy League kid in the family!

Citygirl's promotion at the CIA makes her the youngest executive there ever, and the fastest promoted.

JuJuBee has applied for LPN school, looking for ways to make things better for her growing family.  I'm incredibly proud of her toughness and drive.  I'm incredibly proud of her pride.

If you had asked me, back in the beginning of 2011, what I pictured for the future in six years, I might have mentioned a second home in the south, plans for retirement, Babygirl's upcoming high school graduation. None of those things are happening anytime soon or on the expected timeline.   Life does what it does, and goes where it goes, and we have learned the cold hard truth:  Control over our lives is an illusion.  We can only hang on, and our choices lie in whether we laugh or cry.

I suppose it's anyone's guess whether Babygirl would have had such severe migraines without the transplant. But there is no question of how unendurable her suffering was on dialysis, and she'd be quick to say she wouldn't go back for any money.  Since it's her life, and her pain, my maternal gut-twist over all of this takes second place to the fact that she remains steadfastly and absolutely grateful for her transplant.

And therefore, so am I.

So happy first birthday to BamBam, and happy 5th anniversary to Babygirl's and Jorge's kidney!  Long and happy may they all live!

DeeDee

Friday, February 3, 2017

Five Solid Years.....

We got a letter from the family of Babygirl's kidney donor, Jorge, last month.  They said they're sorry they don't write more.  They admit that they are still very sad, and said that they are going to go home to Mexico for a while.  Lordy.  I'm impressed that they have the strength to write at all.  I'd be curled up in a little ball forever, I think.


I think of them often, pray for them, and am grateful for them.  I mourn with them this day.  Every. Single. Year.  Probably for as long as I live.


DeeDee



Saturday, January 14, 2017

Art Museums.....

Thursday was a medical travel day.  Nephrology finally got word to us (at the extreme last minute) that they were fitting us in at 8:30 AM. Since Neurology was at 3:30, it left us a big gap.  The trip between hospitals can take an hour in tough traffic, but even taking that into account, we had 9:30 - 2:30 to do as we pleased with.

We've had the Philadelphia Museum of Art on our list for a long time.  Babygirl loves museums of all kinds, and I'm game for just about anything, really.  The weather in Philly yesterday was amazing for mid-January, a balmy 60 degrees.  We took a look at all our transportation options (subway, bus, taxi), checked a map, asked the locals and opted to walk.

Philly has a lovely riverwalk up the Schuykill river.  The hospital is only a couple of blocks from the river, so we crossed over and hiked the two miles to the museum.  We watched dozens of people try to sprint up the stairs and then take photos a la "Rocky."  We chatted about how, in some ways, the view down Ben Franklin Ave felt a little bit like Paris (side note:  The steps up the museum are in 5 rounds of 13 steps.  Since that number is considered unlucky you almost never see steps set to that number if it can be avoided, and it certainly could have been on an outdoor flight.  There has to be some bizarre Masonic historical context there).

Admission to the museum was more affordable than to the museum at U. Penn, surprisingly.  I asked the desk whether the museum had a Van Gogh on display, and was delighted to find out that they had several.  I've never really seen one.  He was surprised when I (shamelessly name-dropping LOL) told him that the Louvre doesn't have any, nor any Monet/Manet paintings - they are all in a separate set of museums that we never got to.

Babygirl had no specific interest in those artists, however, and on learning there was to be a guided tour of the South Asian art section decided that we should go with the tour.  It was admittedly fascinating.

"A soul outside the cycle of time." My mind is still a bit boggled.



The ever-popular lay-on-the-floor-to-get-the-ceiling shot:



The tour thankfully left us enough time to swing through the impressionists wing as well.  Seeing great art in person is completely different than seeing a photo.  Brushstrokes, layers, lighting, movement.  Amazing.

This is one I had never even seen a photograph of, called "Rain" by VanGogh.  Sorry for the odd sizing.

 

This gives a pretty extreme closeup of one of the sunflower series - it ALMOST does the brushstrokes justice.....



And then there is this oddity, by Toulouse-Latrec, a portrait of his dog painted on a random piece of cardboard (seriously, I suppose there is only so much Moulin Rouge to paint...):



The locals had recommended downloading the Uber app and catching a ride if we needed one.  I was truly surprised at how easy and affordable that was.

The ride from Philly to Wilmington was complicated by a handful of accidents on I-95 south (one apparently involving a truck full of carpets?), and Google rerouted us through an urban neighborhood where we saw a man come out of his rowhouse with a white german shepherd and a pig.   Not a little Vietnamese potbelly, a 400 pound white pig.  Sideshow, as it were.

Medically all is well.  The kidney is happy, Botox is helping the headaches at least for half of the time it is supposed to and we have marching orders for the next few weeks.

DeeDee

Wednesday, January 11, 2017

Things Unforgotten.....

While taking down the Christmas tree on Saturday, I reflected (as I always do) on the origen of each ornament.  Some I can't recall, some are a bit generic ("I bought that box to go on my first tree after medical school") but many more than you'd imagine have specific memories associated with them.

Most of my grandmother's have been broken or gone missing, but there are real pinecones with glitter that were maybe hers? Or Mom made them because they were like hers?  There are at least a dozen made by hand by my children over the years. There are gifts from college friends, long gone from my life but not my heart. There are ornaments that move me from far past to present, each a memory of love and caring:  Gifts like gentle voices from Christmas past.

There is one that always makes me pause each year, both in placing it on the tree and removing it.  It's a sweet little gray tiger china cat, sitting on a real satin pillow - odd for a Christmas ornament, really.  It was given to me by a patient more than 25 years ago.  He was the first of my patients to die entirely in my care.

Robert had suffered from severe depression his entire life in the era before Prozac. Treatments were limited to medications so sedating that people sometimes drooled; or to electroshock therapy.  Long-term hospitalizations were common.  He had done these things, and survived them all.

I asked him how he managed.  His answer remains one of the most haunting I have ever heard.

"Well, Doc:  Every morning, the first thing I do is decide whether or not today is the day I am going to kill myself.  When I decide it isn't, I put it out of my mind and get on with my day."

Every. Morning.

What kind of courage is required to look yourself in the eyeball every single day of your life and make a conscious decision to keep fighting a lifetime of accumulated despair?

He died at home only a few days after a cardiac workup.  I'll never know if I failed to find the problem that was causing his symptoms, or if his having symptoms gave me a way to put 'natural causes' on his death certificate for his family when he maybe made a different choice.  Those who found him found no reason to suspect that he had taken his own life.  I know he was intelligent enough to not leave evidence behind.

I've given it more thought as years have gone by than I did at the time.  This is very complicated:  Am I uncomfortable because I might have missed a treatable cardiac problem (I certainly was at the time!)?  Or because I think I could have helped more with his depression?  Or because I might be happier thinking he harmed himself than that I might have missed something?

Uncomfortable thoughts indeed, for a young doctor.  No less uncomfortable for time passed.

Doctors in general are realists.  We know that things happen, we know that we have the barest illusion of control, we know that our patients' lifestyles matter more than what we do much of the time.  I am good at compartmentalizing:  Separating home from work, head from heart.

But Robert thought well enough of me to give me a gift.  So each Christmas I spare a thought and a prayer for my many patients like Robert, who make the choice daily to live against the forces of despair.  And I remember those who haven't survived my care but whose courage lives on in my heart, inspiring me to always, always try my best for the rest.

DeeDee

Thursday, January 5, 2017

Irresponsibility.....

Generally speaking, I am a full-fledged grownup.  I am the one who manages Babygirl's medical appointments, medications and day-to-day needs.  I am the one who organizes vacations, family gatherings, big meals. I am the family CFO, paying (or juggling, as needs must) the bills. I am the one who manages the household stock of toilet paper.  You know, The Grownup.


Babygirl needs to see her specialists every three months, and have blood work every six weeks.  Her last appointments were in October.  We saw nephrology first, and then rolled out of Philly to go to Delaware to see the neurologists.  Since I didn't know when we would be following up with neurology, and they are harder to get appointments with, I told nephrology I would give them a jingle when I had more information about when I was coming back.  They gave me orders for blood work in six weeks and I sashayed out the door.


When I flipped the calendar to 2017, I realized two things:  1)  I had failed to take Babygirl for her six week blood work, and 2) I had never scheduled a nephrology appointment to go with the neurology appointment, which is upcoming on a Thursday. 


Well.


Adulting is hard sometimes.


Since the nephrology clinic is booked full on the day we are going to Delaware (and the day before AND the day after!), this means that I am going to have to make two separate four-hundred-mile round trips this month to the Philly area. 


Geeze.......


DeeDee.

Monday, January 2, 2017

Start the New Year: Clash of the Titans.....

Yesterday morning, despite a no-alcohol New Year's Eve, I was a little fuzzy in the morning.  We have three dogs, and I let them out in shifts, since Larry really can't focus on getting his business done with Capone's hyperactive intrusions into his....business.

Curlygirl and her roomate live in the apartment next door, and they each have a dog.  Capone (well-named little criminal that he is) doesn't want to make friends with Titan (a Pit/Boxer sweetheart) and Opie (a demon-possessed poodle/chihuahua mix), so we have to really watch the back doors to avoid conflict.  To add to this, Titan has been known to slip his collar on occasion and take himself for a stroll.

So when I opened the door to let Larry in, and a biggish Pit Bull hopped in through the door, jumped up on my chest and gave me a Titanic kiss, all I wondered was how the HELL he'd gotten out AGAIN and WHY is wearing a bandana instead of his collar??

I let him into Curlygirl's apartment, and let Larry in our side and put Capone out.

A couple of minutes later....some sleeping section of my brain got a hit of caffeine and thought, "Wait, what?  Titan isn't quite tall enough to kiss my cheek, is he?  And what color was that dog??"

I slipped into Curlygirl's appartment to find THREE dogs happily playing.  Oddly, Opie did not object to the extra Pitty, and Titan never objects to anything.  Yeah, it was a BIG dog, gray, not brown and white.

That explains the bandana vs collar thing.

Curlygirl was asleep on the couch through this entire thing, mind you.  Gray Doggie gave her a good sniff and a tail wag.  Lucky for her he didn't jump up and join her - I'm guessing he was a solid 50 pounds of muscle.

I snagged the bandana and gently led him to the front door, figuring that he could just walk himself back to wherever he came from, right?  As I opened the door, I spotted a neighbor with a leash and collar headed for my back yard (where Capone was raising a mighty ruckus), calling "Blue!  Blue?"  Good name for a gray dog I guess.  She was dogsitting for her son and Blue had snuck out. She was happy to see him, if somewhat puzzled by his indoor visit with us.

Oh. My. Goodness.  Thank God he was a peaceful dog.

DeeDee