Monday, July 29, 2013

Back to the Routine...

Returning to the real world from Paris has been jarring.  And busy.  And dramatic (because life without drama is apparently not in the cards for us).  I returned to work Monday, and had my usual end-of-the-month half day on Tuesday.  Good thing for me, since JuJuBee's midwife decided that Tuesday was The Day.

Sunny was due August 6.  But there have been some concerns about her growth, and a decline in amniotic fluid pushed the midwife to induce her.  I came and got Boo so Daddy could focus on JuJuBee and the delivery.  From IV placement to delivery was about 2 1/2 hours.  When I came in to hold JuJu's hand for the remainder of the cleanup (they were setting up to do a D&C when she finally delivered the placenta (I know, TMI but it's the ongoing damned DRAMA)), I laughed and informed JuJu that she should take her time - it's not a slip and slide after all!  The midwife laughed out loud and said she had just told her the exact same thing!  So now Boo has a little sister whose birthday is two days before hers.  My brothers were the same.

Sunny and JuJuBee are still in the hospital.  The week has been complicated by Sunny's poor temperature control, low blood sugars and jaundice.  Hopefully she'll go home tomorrow with a biliblanket and they'll get some rest.  Boo is sleeping over at Grandma's tonight.  Again.

In the meanwhile, Babygirl and I went to NYC Saturday morning to hang out with Citygirl, who is in the process of packing up to move to the west coast.  Sunday morning we loaded up the truck and drove to Philadelphia to be ready for this morning's doctor visit.  We saw a new doctor, and left without knowing any lab results.

The call about results came after we'd arrived home.  Babygirl hadn't felt up to going to the amusement park on the way home, so the trip was quite quick. 

The results:  Creatinine 1.1, up (again) from 0.9.  Her anti-rejection med levels are low, so increase the dose.  And her anemia?  Much worse.  Normal hemoglobin is 12.5.  She generally hovers around 10.5.  It's down to 8.5 now, which explains her general cold intolerance and fatigue.  The Team is, as usual, meeting tomorrow.  They call with a plan, but they are considering restarting erythropoietin, which of course her new kidney is supposed to be making.  She won't mind the shots, but our new insurance might.  Our old insurance took three weeks to approve it two years ago. 

Maybe they'll just let us redo the labs locally....

Next appointment is with the Teen Clinic (she'll be 14 so she moves up!) which means we now need to make our visits on Thursdays instead of Mondays.  Ugh ugh ugh.  Thank God we're accustomed to the trip. 


Sunday, July 28, 2013

Festivals, Flea Markets, Pickpockets and Farewells.....

Paris was celebrating Bastille day we arrived, and the streets were packed with celebrants.  Like our Independence Day, there is always a background of firecrackers and sparklers.  We left our hotel after a four hour nap and headed toward the Plaza De Mars to see if we could find a place to watch fireworks (note to self:  Next big international trip, pack an old sheet for picnics/fireworks etc.).  This enormous park at the foot of the Eiffel tower was FULL of people celebrating in one way or another.  We had a meal, got our first pictures of the Eiffel tower, and gradually came to realize two things:  First, that the sun sets VERY late in Paris and fireworks wouldn't start for a long time, and second, that the sheer weight of people would make the subway trip back to the hotel VERY uncomfortable.  So we took the cowards' way out and went back to the hotel and watched about 4 different sets of fireworks from the windows.

We each had things we wanted to do in Paris, so we made a list.  Among them was to go to a local flea market.  Citygirl stumbled across such a market on a random ramble and found out that it would be up and running on our last day.  When we arrived, however, there was no evidence that the market was even being set up.  Nothing daunted, we moved on to Plan B and stormed the handicapped gate at the Louvre.

Somewhere between the hotel, our morning bakery run, the non-existent flea market, buying subway tickets and the Louvre, I discovered that my wallet had been neatly removed from my purse.

There are signs EVERYWHERE warning of pickpockets.  We were pretty vigilant - my purse was always over my neck and shoulder and resting in front of me, usually with my hand on it.  In the crowd in the Eiffel tower I had been thoroughly groped from behind, and Hubby felt several different attempts on his back pockets as well.  But the guy who finally got my wallet must have had amazing skills - I never felt a thing.

There wasn't much in the wallet.  I need a new drivers' license.  There were maybe 20 euro.  But our Make-A-Wish gift card was in there.  Fortunately I had taken quite a bit of money out the night before, and by my calculations there wasn't much money left on it.  Hubby had an emergency credit card with him and we had already spoken to them about the fact that we'd be in Paris and would likely be using it, so we shook it off and went on to enjoy the remainder of our last beautiful day in this wonderful city!

One final Wish that Babygirl had for Paris was to get dressed up in our finest clothes and go somewhere to eat.  During the week we had tossed around various ideas:  Picnic on the banks of the Seine, expensive restaurant, stroll up the get the idea.  By our last day we still hadn't done it.  We'd done so much that day already, but we couldn't let it pass, so we put on our fancy duds and walked out into 'our' MontParnasse neighborhood in search of one of the incredible creperies that dominate the area.  There is nothing so festive as setting your final dessert in Paris on fire!

I spent my last night in Paris gazing out of our hotel window, finally able to fully identify all that I was seeing:  MontMartre, Sacre Coeur, the Tuilleries, Louvre, and Notre Dame Cathedral.  So sad that it was my last night to soak it all in!

Citygirl and I had an early breakfast together since she had an earlier flight than we did to make her final destination of Florida (a trip she had already planned and paid for before we finalized the dates with Make-A-Wish - and thanks to THEM for helping her change all her flights without penalty!).  And a late breakfast with Hubby and Babygirl before our lovely limo ride to the airport, where we had one final meal at the Laduree' branch there!

And then six solid hours of turning my barely legible daily jottings into the true diary from which these blog posts have been written, all on the beautiful handmade paper journal given to me for Christmas expressly for this purpose (thanks, Arianna!).  I filled nearly half the journal.  Babygirl was still skeptical about legibility LOL.

I cannot imagine a better, more enjoyable, more action-packed journey than the one we took.


PS Spellcheck HATES French.  Toiletries?  Creepies?  Really?

Saturday, July 27, 2013


Make-A-Wish sent Babygirl a list of potential activities to select from in anticipation of her trip to Paris.  It included tours of Giverny and Monet's gardens.  Tours of Versailles, Flanders, Normandy, the Louvre.  Dinner cruise on the Seine.  Paris Disney. 

She didn't know what a lot of them were.  So we Google'd, and Bing'd, and made choices:  A general tour of Paris by bus, a trip to Versailles, and a trip to Normandy.  Yup, my kid is smart enough to skip Disney.

We left for our tour  at 6 AM in an 8-passenger minibus.  The other four passengers were American tourists from a different hotel, and our tour was designed with Americans in mind.  We spent the two-hour drive conversing with our tour guide and learning some much-needed background history.

At one point one of our traveling companions asked our guide, "Have you ever taken any famous people on this tour?"

"Not so much famous, no.  But I have taken many IMPORTANT people.  The soldiers, you see, they come back, or their wives come.  They bring their children and their grandchildren and tell them the stories, to make sure that they do not forget."

I will never forget that, never.  It brought the entire tour into sharp relief for me. 

We stood on Pont du Hoc  and learned of the amazing courage of the handful of Rangers who scaled the cliffs to take the guns.  The ground is pocked with 25-foot-deep craters from the shelling.

We saw Omaha, Juno, Utah beaches and memorials.  And we saw the American Cemetery and the beaches below. 

We had a lovely lunch in a chateau that pre-dated the invasion.  And we drove back to Paris through the lush French countryside, seeing parts of the country that we would have missed entirely if Babygirl had limited us to Paris alone.

My uncle fought in WWII.  He wasn't at Normandy, but I wrote his name in the sand there.  He wasn't famous, but he was IMPORTANT. 

Babygirl learned that history isn't just something you study in school.  By the time we returned to our hotel at 6:30 PM we were exhausted in the best possible way.  We all stretched body, soul, mind and spirit that day. And we are all the better for it.


Friday, July 26, 2013


Paris is FULL of towers and monuments, all begging to  be surmounted for the incredible views they afford.  Many (but not all) have elevators.  ALL have stairs in addition to wherever the elevator drops you - you must climb up or down to the elevator, depending. 

One morning, without any particular plan in mind, we went to the Champs-Elysees to shop with an eye toward touring the Arc de Triomphe and having cookies and hot chocolate for lunch.  Babygirl had discovered that none of the shoes she brought were really supportive enough.  Her meds make her feet tend to swell, and by the end of our second day foot pain had become a big issue.  Shopping for shoes on one of the most expensive streets in Europe didn't seem like a great plan, but hey, Make-A-Wish had given us instructions to spend ALL of our money, so why not? 

Babygirl found a pair of black high top sneakers.  We'll be lucky if she ever takes them off she loves them so much. 

Anyway, back to the towers.  

We bought passes for the Arc de Triomphe and were informed that the elevator was reserved for the handicapped and small children.  Hubby decided that being four days post-appendectomy constituted a handicap and the rest of us took to the stairs.  All 296 of them. 

Once at the top,  however, we were blessed to catch our breath surrounded by one of the best views Paris has to offer.  Our hotel, the Eiffel Tower, Notre Dame, Sacre Coeur Cathedral - all of them bright in the morning sun.  We climbed back down, had our macaroons and chocolate, and in a fit of sugar-inspired energy, decided that Sacre Coeur was next.  I know I already mentioned this under 'Churches' but it deserves double mention, believe me.

Once we had visited the interior of the cathedral we notice a sign pointing to the dome and the crypt.  Since the temperature that day was approaching 90 degrees, the crypt had a certain allure.  We went down about 40 steps to discover that the entrance to both the dome and the crypt were in the same location.    We discussed our options.  If the view from the Arc was impressive, the view from the dome must be spectacular - after all, the cathedral is built on the highest hill in Paris.  The catch?  Signage that clearly stated there were more than 300 steps up and no lift.  We're still day four post-op here and Hubby has a bad knee....

Aw, what the hell.  We have Advil.  And Tylenol.  AND Percocet.  So we bought passes.  Yes, you have that right.  We PAID to do this. 

Old stone steps.  Spirals lit only by arrow slits.  Straight runs along the edge of the roof.  Steps varying from 4 to 16 inches in height/depth going around tight corners to go up and OVER the roof to enter another set of dimly-lit spirals.  We moved from below the roof-top sculpture of St. George and the Dragon to eye-level with ol' George to far, far above them both until we finally, finally reached the 2' wide ledge that runs around the bottom of the dome.

I'm fairly sure that there was nothing in all of Paris that we could not see.  A visiting choir began to sing far below us on the steps of the church, sweet music drifting up to us as we circled, and circled, and circled the dome.  We were admiring the view, honest.  Trying to work up the courage to start back DOWN had nothing whatsoever to do with it. 

It took me over 5 minutes to set foot down the first step, a high one, first of an uneven almost-spiral that started me into the dark.  Hubby had gone first, then the girls.  A couple of dozen steps down, I heard Citygirl ask hubby in urgent tones if she could pass him. NOW.  Somehow going down was so much worse than going up that it triggered a bout of claustrophobia, and she literally ran for the bottom.  We're lucky she didn't kill herself!

Once at the bottom, we toured the crypt, and then had to climb back OUT, return to the funicular and then continue to climb down toward the train station.  We stopped for a delicious dinner, included a LOT of wine, and took the train to the base of the Eiffel tower for our sunset Seine river cruise (which, I confess, included a couple of more drinks).  Just as we were docking, the Eiffel tower lit up fully, sparkling and glowing in the fading twilight, brilliant, overwhelming beauty.

So naturally, we decided to climb THAT too. 

Waiting in line for an hour for passes (a short wait, I assure you) cooled our climbing ardor a bit.  We took the elevator up to the second level, about 2/3 of the way up (the top level had closed since it was nearing midnight).  Once again we were sure we had the finest view in all of Paris.  Cities of all kinds are lovely at night with all of the glowing lights, but Paris is exceptional.  The Ferris Wheel (one little girl near us said it should be called a Paris Wheel!) at the Tuileries Garden was brightly lit, the street plan so clear.   Ahhhhh.

The girls decided to take the stairs down.  We took the elevator, and they beat us.  They said they counted over 400 steps. 

Yup.  Three of Paris' highest monuments in one day.  That's how we do things.


Thursday, July 25, 2013

Time Zones and Timing Meds.....

It is important for every transplant recipient to be on a regimented schedule for medications.  Babygirl takes all of her pills at 7 AM and 7 PM, Eastern Standard Time.  We get a text message reminder on my phone at those times from

For this international trip we opted to save a bit of money and not take our cell phones.  Why would we need them?  We left emergency contact information with my Mom's caregiver and left town, gleefully aware that no one could bother us while we were gone!

Except for the fact that we didn't get twice-daily reminders.  Oh, yes - and there was the six-hour time zone difference thing.  If she's supposed to take her pills at 7 here but it's 1 there, when does she take them?  We had 6 extra hours going and lost 6 coming back.

Somewhere in our jet-lagged chaos, Babygirl missed two doses of medication.  I think it was two.  I'm sure at least one.....

See, that was the problem.  That, and the fact that we had to carry all meds in labeled bottles and not pill sorters. I did fill a sorter when I got there, but we took one days' worth with us wherever we went to decrease the risk of missing doses.  The net effect of that was that we could always easily tell if she HAD taken the pills or not. 


It was truly the only difficulty involved in the entire trip.  Not counting the old lady in the plane's restroom.


Wednesday, July 24, 2013


I've always heard that French food is tasty but the portions are small.  And I've always heard that French waiters are incredibly rude.

Cultural stereotypes are interesting, no?

There is no excuse for going hungry in Paris.  There are restaurants, bakeries, bars and bistros everywhere.  Fruit sellers come out in the early evening on nearly every street.  Prices vary from "Wow, that was cheap!"  to "Mortgage payment."  It didn't matter what we paid, everything we had was wonderful.  We frequently ordered appetizers and shared them, which allowed each of us to taste things we'd never had before.  We often did not need to order a full dinner.  On more than one occasion we had dessert for lunch. 

One very memorable meal was at Laduree'.  Famous for macaroons and other baked goods and located on the Champs-Elysees, this lovely place has the most excellent hot chocolate anywhere.  It was so thick I expected it to solidify as it cooled!  We had various flavors of macaroons (and don't think of coconut - these are small cake-like cookies sandwiching a rich filling and covered with bright-colored frosting) and eclairs with hot chocolate for lunch and paid more for it than for any other meal we ate!  The strength of that meal got us all the way up Sacre Coeur's dome!

Babygirl adores chocolate.  And while she was not as impressed as I was with Laduree's hot chocolate, she loved chocolate mousse, chocolate croissants, and chocolate crepes.  Crepes were the specialty of the Britons, who settled in the neighborhood of our hotel.  They could be made savory or sweet, and either way they were amazing.

Each of us ended up learning to like something we hadn't had before - stinky cheeses, anchovies, mustard and cream sauces. We had wine of every color, beer from three continents and hard cider.  In fact, one of my favorite pictures of the trip (on Citygirl's camera) is a picture of Babygirl after she'd taken a swig of that cider.  She had the oogies. 

As for the waiters?  Well...... I guess some stereotypes have a basis in reality.  Waiters would bring menus.  From that point on if you wanted one, you had to wave him down and ask.  And ask.  And ask again.  The plus side of this is that they never seemed to want to hurry you out.  The downside is that eating out is not terribly efficient.  But the relationship between eating and living in Paris is so radically different than here that it's almost impossible to imagine.  We never saw people eating and walking at the same time.  Lots of people would carry picnics to the banks of the Seine, but one never saw them hurry a meal. 

We had two funny stories. In one restaurant I made the mistake of not beginning my request in French (unspeakable rudeness!) and the waiter ignored us to the point of not even bringing menus.  Citygirl stood up and stomped out in a pique inspired by hunger.  We ended up half a block away and a most delightful place, and gained our introduction to Belgian beer.  The second time we went to the same restaurant (our only repeat) we had a different waiter.  He was unimaginably rude to start with, literally throwing up his hands and walking away while Hubby was deciding what to eat.  Bless Citygirl - she had the nerve to ask him what his problem was.  Turns out he had just quit and had to finish out his shift.  We cheered him on in his choice and became his favorite customers! 

Looking back, our largest food-related expense was hydration.  We routinely spent 4 euro for bottles of water, multiplied by four people, four times a day at least.  One of the kindnesses of Make-A-Wish was that they made it unnecessary to buy water in bulk and carry it wherever we went.  We were able to provide Babygirl (and all of us) with cold drinks wherever we were without having to worry about the cost.  It seems like such a small thing, but as the one who is usually carrying a backpack full of water bottles, it was a BIG deal.

Being able to eat whatever we chose wherever we wanted was awesome.  On each day we'd ask each other what our favorite memory of the day was.  My all-time favorite response was Babygirl's:  "This is my favorite part, all eating together and laughing."


Tuesday, July 23, 2013

Le Toilette.......

Every culture has its quirks.  And nowhere are these more easily seen than in a bathroom.  British baths generally lack showers.  German baths have showers but no shower stalls.  Pakistani baths lack recognizable toilets (um, yeah.).  And since I am the person who takes note of this sort of nonsense, I thought I'd give you my view on French bathrooms (sans pictures.  You're welcome).

Our hotel bath had a lovely soaking tub with a shower, but raised high enough off of the floor that getting in was challenging.  The girls have bruises to prove it (Babygirl is to blame for her sister's - it's a story).

We also had a bidet. 

I've never seen one, although of course I've heard of them.  Picture a seatless toilet-shaped sink, complete with hot/cold water faucet and plug system set at toilet height, in addition to the traditional toilet.  Clearly this is a vast improvement over our meant-to-be-temporary-first-aid sitz baths.  I admire the idea.

Signs identifying restrooms were less standard than here.  The women were more fashionable, with hemlines varying from mini to slanted.  Cutesie icons were common - little girls sitting, little boys standing.  I have a lovely modern art Mona Lisa photo from the ladies' room at the airport.  It made me wonder what was on the wall in mens'.

Public restrooms are rare in Paris.  There are a few of the type seen in Boston that actually completely sanitize themselves between uses.  Restaurant restrooms vary from the utilitarian to the vastly amusing. and most are situated on a different floor than the eating area.  In many older building these rooms are clearly afterthoughts squeezed into tiny spaces originally meant to be hallways, pantries, or even staircases.  In more than one the toilet was situated in such a way as to necessitate sitting sideways.  It is not unusual for a restaurant to charge its patrons half a euro or more to use the bathroom.  In the Louvre, restrooms were added into the walls in between buildings. In restrooms with stalls the women's stall doors go from floor to ceiling, so no peeking.  The men's are more like saloon doors, easy to see above or through.  How do I know about the men's stalls?  Many restrooms have a central wash area used by both genders with the stall doors opening directly out of that space.  Vive la France! 

I had two favorites.  (Okay, really?  Have you met me?  Of COURSE I do!) 

The Lebanese restaurant just off of the Rue de Rivoli.  I descended a staircase so mysteriously lit that I wished I had a flashlight.  I opened the door - total darkness.  I spotted a switch outside the door (common enough there).  When I hit it, the modern bowl-shaped sink began to glow.  Orange.  There were no other lights. The entire room was tiled in tiny black tiles.  Allowing myself to adjust to the gloom, I spotted a stall door and entered.  A motion sensor set of a narrow spotlight aimed directly at the toilet seat.  Sitting in the spotlight, I was unable to clearly see the shape of the tiny stall.  By contrast, climbing the gloomy stairs was light by contrast.

But my absolute favorite were the ones at Laduree' restaurant on the Champs-Elysees.  The building is fantastically beautiful, and the baths have marble floors and lovely detailed wood doors.  And the toilet seats are square.  Square. 

So now you know how easy I am to entertain.


Monday, July 22, 2013


No visit to Paris could be considered complete without seeing le Cathedrale de Notre Dame.  It is the heart of old Paris, famous both historically and architecturally.  We saw Notre Dame as part of a larger bus tour of the city.  Our guide, while knowledgeable, sounded a bit like Minnie Mouse, and referred to anything she considered entertaining as "Eet eez like Disney, voila?"  I unplugged my headset and wandered at my own pace, surrounded by peace and beauty.  Babygirl and I lit candles for our friend Kate, and for her son Mason in honor of his second birthday.  It was easy to feel his spirit in that holy place.

Despite our tourguide's annoying chirkiness, she made several good suggestions about things to see.  It was on her advice that we went on our own to see Sainte-Chappel.(  Built in the 1200's, it predates Notre Dame.  It is constructed in such a way that it appears to be almost entirely glass, soaring a hundred feet into the air.  The windows tell much of the Bible in pictures.  Deuteronomy through Joshua/Judges was being repaired while we were there and not available to view.  The book of Genesis is carved in bas relief on the stone walls outside the cathedral doors - creation, Cain and Abel, the flood.  The window colors are of breathtaking intensity.  Short of the Taj Mahal, it is the single most beautiful building I have been privileged to see.

Our final church visit was to see Sacre Coure Cathedral in Montmartre, a neighborhood on the highest elevation of Paris.  Built of white marble, it is visible from nearly anywhere in Paris.  The climb from the train station too the foot of the hill the church rests upon is steep.  One then has the option of climbing a LOT of stairs or taking a funicular ( )which was fun and had a spectacular view.  Since we were able to clearly see this church from our hotel window, it was fun to try and do the reverse and spot our hotel from the steps of the church. 

Montmartre is a place I'd choose to spend more time if I ever go back.  The shops were fun, the restaurants had a lot of Middle Eastern influences, and the atmosphere generally festive.  Babygirl bought her souvenir Paris bag there for far less than we had seen the same one sell for in our neighborhood of Montparnasse.


Sunday, July 21, 2013


We investigated only two castles on our Make-A-Wish trip to Paris.  Le Grand Palais was closed for the season, and we never tripped across the Petit Palais while stumbling through the city, so we limited ourselves to Versailles and the Louvre.  (Although both the Petit and Grand Palais are not truly castles - both were built for the World Fair of 1900 along with the Eiffel Tower).

We took a guided tour of Versailles.  There were eight in our group, and our guide met up with another group tour, I think to facilitate getting our small group in.  Four million people visit Versailles each year.  Most of them were there in the palace with us, I think. 

Don't get me wrong - the castle, the architecture, the artwork - all beyond anything I've ever seen. Contrasting the opulent lifestyle of the royalty with the struggles of the common people was eye-opening.  But we were JAMMED into those lovely, lovely spaces with so very many other people!  It was hard to get a clear photo, or sometimes even a clear idea of what type of space we were standing in.  We had radio contact with our guide via earbuds, but frequently I couldn't actually see him.  It was very overwhelming.  Babygirl loves real estate and historical buildings.  Many of her pictures show very small details, parts of tapestries, doorknobs and so on.  But she was having a headache day at Versailles, her only true 'sick day' of the trip.  The heat, the crush, and everybody's flashbulbs took a big toll on her.  By the time we were out of the castle and into the 250-acre gardens she was done.  We had very little time to appreciate the gardens anyway.  Citygirl went off on her own to explore a little and came back with what she called "Alice in Wonderland" photos of the area.  If we had had more time I would have loaded Babygirl and Hubby into the little tram for a ride around the gardens, or hired one of the many golf-cart taxis available. 

I wasn't having a great day either.  Having food allergies and not being able to speak the language led to a sudden severe bout of itching that started in the tour bus on the way into Versailles.  I took some benedryl, and then later couldn't figure out for the life of me why I felt so exhausted!  Caring for Babygirl's headaches distracted me so much I forgot.

We had a much better time at our second castle, the Louvre. 

Everyone I know traditionally thinks of the Louvre as an art museum.  I forgot (if I ever knew) that it was originally home to the royal family, before the Sun King decided to expand Versailles and make that the center of government. 

We began with a tour of Napoleon Bonaparte's family quarters.  Versailles did not appeal to Bonaparte, apparently, perhaps because it had been looted after the revolution.  The opulence of the furniture and art beggars description, and they had far more of the original furnishing than were available at Versailles.  The dining table was set for 50 people with far more elbow room available than at our Thanksgiving meals! 

There is no good way to see all that the Louvre has to offer.  they display only about 10% of their total collection at one time, around 35,000 items out for public view.  There are six miles of corridors in the museum altogether.  Getting lost is not only inevitable, it increases one's odds of stumbling across something unexpectedly delightful.  We were lost in Egypt and Greece for a couple of hours, and wandered past The Winged Victory 3 times before we found our way to the big prize:  The Mona Lisa.  She is lovely.  I decided taking her picture was a waste of time and just drank it in.  But my favorite portrait was in the room with her:  and elderly man with so much character in his face that I stared at him for a long time.  We then got lost among the romance painters of the 19th century.  Our favorite by far was La Jeune Martyre by Paul Delaroche.  The ability to paint what you see through water on a dark moonlit night...gripping.  Both of the girls also loved period portraits of noblewomen, especially those that detailed the lovely clothing.

We did the Louvre without a tour guide, all on our own.  We enjoyed lunch in one of the restaurants and afternoon drinks at the other.  But the security line almost did us in - there was a 2 1/2 HOUR line in the 85 degree sun to clear security.  Hubby was still using his cane, and Citygirl sought out the handicapped entrance.  Apparently, in France, one can obtain a card stating that one is handicapped, which we obviously did not have.  There was no way for her to translate "kidney transplant" or "Make-A-Wish", but "appendectomy" sounds about the same in any romance language, and it did the trick.  They let us in and even offered a wheelchair (nice thought but utterly impractical in that massive ancient building!).  Although the Louvre has 8 million visitors annually it did not feel nearly so crushingly full as Versailles, likely because there is so much more space open to the public.

If I were to go again, I'd skip the interior of Versailles and tour the gardens there.  But I'd go to the Louvre again and again and again.


Third Year, Week 14 - Travel.....

We are safely home, and glad of it but already missing Paris.  As the week went by I gave a lot of thought as to how to tell our many, many stories.  By the day?  By location? 

Babygirl, on our arrival home, was immediately asked what she had liked the best. 

"You can't ask me what my favorite part was when the whole trip was so good!"  Amen.

So here goes:

There are few things as stressful to me as getting ready for a trip.  Organizing everyone and herding all of my cats, er, kids through the process, continually head-counting all the way?  Ugh.  But Make-A-Wish does such an awesome job of setting up the trip it removes most of the stress.  And this is my first vacation in years that involves only one person under 18!

Our wish granters were at our house when our ride arrived - a big SUV with plenty of leg room.  True, our driver was oddly unhelpful with the suitcases, and with Hubby unable to lift (seriously, we're doing this with a man who is 36 hours post-op from an appendectomy?  We are clearly nuts).  He drove us to the airport in record time, which is to say he hit 85 mph at least once when I looked!  Our wish granters were somewhere behind us praying to avoid speeding tickets.  The were not happy campers LOL. 

On our local-to-JFK flight we had an interesting reason for a landing delay.  As we were approaching the runway, landing gear down, an elderly lady got up from her seat and sauntered to the restroom.  She didn't speak English, the flight crew couldn't get her out, and the landing was aborted.  Because of this, we had to SPRINT from our local flight through the NYC heat and humidity via what was clearly a construction zone.  Citygirl was meeting us for the NYC-Paris flight, and she was steadfastly refusing to board until we arrived.  She was somewhere past Xanax-level panic when we finally appeared, sweating and swearing and deeply relieved to have caught the flight. 

Traveling in Paris is walking, tour buses, walking, subway, walking, taxis, walking, escalators and walking.  Being driven in a taxi in Paris is a hair-raising event that makes NYC and Boston drivers look positively patient and mannerly.  (Random note:  the cross/don't cross signs at intersections feature little green men.)  Tour buses vary from full Greyhound-sized to cute 8 passenger vans.  (Random note #2:  Tours are very useful - but free days allow for more unstructured enjoyment of the monuments and city.)

Our return was even more adventurous.  The flight from Paris to NYC was utterly uneventful aside from the idea that we arrived only 2 hours after we left (gotta love those time zones!). I spent much of the flight preparing blog posts from my notes.  (Babygirl looked at both the unedited notes and the final hand-written version and said, "Are you SURE you'll be able to read that later?") Weather in NYC delayed our landing.  Customs was absolutely horrific.  We were in line with approximately  1500 people in front of us at the time our NYC-home flight was supposed to be boarding.  I managed to snag an official, break out the Make-A-Wish/sick kid/appendectomy combo and get us to the front of the line.  By the time we were done there was 10 minutes left to scheduled flight time.  (At this point Hubby was gently trying to talk me down, pointing out the overall hopelessness of the situation.  I looked him in the eye and simply said, "I need to go through this, okay?  If we don't make it we don't make it but I'm going down fighting."  Good man - he knows when to let the rage just run it's course LOLOL.)  He waited to re-check our bags while I sought out another official and ran down the sad story again, with vigor.

Bless her.  She gave us water bottles (much needed, really), pushed us to the front of the line, got the bags checked and told us that our flight out was delayed so if we hurried we'd still make it.  We were flying Delta for both flights - all nearby, we were reassured. 

Well, nearby if you mean the entrance to the 3-mile shuttlebus ride!  Once again we arrived at our gate sweating and swearing, covered with the ground-in grime that only 24 hours of travel can lay on you, only to discover that our flight, while still technically on the board, was indefinitely delayed. 

Thank God for Starbucks.  It isn't Paris coffee, but it will do.

We were scheduled to arrive locally around 6:30.  It was after midnight when we touched down, got our bags, and met up with our wonderful wish-granters, who, despite not knowing for sure if we were going to make it, had waited all those hours in the airport for us.  They loaded us into a huge party-bus limo, and we were home by about 2 AM. 

Between us, we have about 2000 photos. 

I promise I'll get some of them up.  After I've had more coffee.  A. Lot. More. Coffee.


Saturday, July 13, 2013

The Big Travel Day......

All packed.  At least, I sincerely hope so.  We'll be reaching the point of no return in two hours.  Hubby is already quite tired of me scolding him for picking up his carry on bag.  And he's especially discouraged to need somebody to tie his shoes for him.  Overall he still is feeling better than he did for the two days before the appendectomy, but this is still going to be a very, very long day for him.  He's napping now.

We made it to church to see off the mission team this morning, delivering two small ladders and a pair of sawhorses (turns out they are doing interior work so the needed some SMALL stuff instead of the usual roof ladders).  I had to locate the sawhorses.  There really is a limit to the size of our basement, but apparently NO limit at all to where two bright yellow sawhorses can hide.  I was on my third tour, looking and looking and looking and......I discovered that the sawhorses were pretending to be, well, table legs.  Hubby had set up a temporary worktable for himself.  Babygirl and I managed to sub out the portable little sawhorses with some heavy-duty ones, but it involved raising the tabletop about a foot.  Teamwork. 

Did I tell you about my new suitcases?  I picked bright purple and pink stripes.  No struggle trying to figure out which one of the huge black suitcases on the carousel are mine! 

LOL okay the Tingle is back.  Time to turn off the laptop and get it packed!


Friday, July 12, 2013


It's been a long-held belief in our family that if at all possible one should pre-disaster any important event.  Failure to do so can lead to having disaster strike DURING one's event, which is to be avoided at all costs.  For example, failing to pre-disaster a beach trip some years ago resulted in a softball being pitched through the rear window of Rhonda the Honda.  My sister-in-law and I lost an afternoon of precious beach time having it replaced (which, if you think about it, is disaster heaped upon disaster).  The year we broke her car's rear window with an improperly installed bike rack right before we left, we had no such troubles.  See?

In yesterday's post I mentioned that Hubby's stomach was acting up.  What I didn't mention was that I suspected, by symptoms, that it was going to be a big problem but that he, ostrich-fashion, decided that he really didn't need to go to the ER.  Until he had no choice. 

Seven last night found us in the fast track.  After two brief sentences addressed to the attending physician there (including the phrases:  "Recent admission" and "GI bleed") that apparently the triage nurse failed to register, we were sent to the main ED for evaluation.  Hubby's lack of fever and vomiting had everybody looking pretty relaxed until the pain hit again and he looked more appropriately ill.  (Is it my imagination or do men immediately forget how much it hurt an hour ago?  I had to keep telling people that the pain wasn't ALWAYS only a '2'!)  The CT scan confirmed what I'd suspected:  Appendicitis. 

Dammit.  I was sincerely hoping it was a kidney stone.  You can travel to places like, say, PARIS, with a kidney stone if they give you enough drugs. 

I asked the surgeon what the odds were that he'd be able to fly to Paris 36 hours after the surgery.  I explained why it wasn't an ordinary trip, taking full and ruthless advantage of the pity the phrase, "Our Babygirl's Make-A-Wish trip" engenders.  He said it all depended upon whether or not he could remove it laparascopically.  He didn't need to tell me how difficult that would be on someone of Hubby's size. 

At 2 AM they wheeled Hubby off to the OR.  As he was going in they spotted his wedding ring and made him take it off and give it to me.  It was all I could do at that moment to keep from breaking down and sobbing.  Oh, God - keep in in Your mighty hands!

One extremely long hour later the surgeon came and told me that the operation had proceeded simply and smoothly.  Appendix out through the belly button!  Barring infection, he'll be discharged tomorrow morning - plenty of time to pack and load a limo if he feels up to it.  The surgeon promised plenty of pain meds for the road.  (Playing the pity card may not have had anything to do with it.  But I'm thinking he went the extra mile to avoid more complicated surgery.)

So Paris is still a possibility.  And kudos to Hubby for being willing to take up the pre-disaster flag.

Thanks for the nighttime prayers from all you night owls!


Thursday, July 11, 2013

The Tingle.......

I'm starting to get really excited about traveling to Paris!  I've been going to the Weather Channel's website (it no longer asks.  It just goes to Paris) to check the ten-day forecast (looking good!).  I'm about 3/4 packed.  I'm so caught up on laundry that my work clothes from yesterday are already clean and folded.  Barring disaster, I might actually be able to work in a pedicure Saturday morning before we leave!

There are, of course, always glitches.  I have a sinus infection (90% better already after two days of antibiotics) and Hubby has something going on with his stomach, which I sincerely hope is just a case of pre-travel jitters. 

It seems there is always some drama when we need to leave the country.  The sheer number of problems we had within 24 hours of going to get Babygirl from Guatemala still staggers my mind when I think about it.  Remind me to share that story sometime!

But back to this post....

Do you remember how you felt when you were a kid and something awesome was going to happen?  The moment you woke up on Christmas morning?  The moment when you finished setting up camp and were turned loose to explore?  Laying out your first-day-of-school outfit?  That deep-seeded, jump-out-of-your-skin excitement?  The Tingle that starts low in your belly and runs right up the back of your spine that tells you something extraordinary is right around the bend. 

I woke up this morning Tingling. 

Our adult lives are fraught with cares and worries.  Our responsibilities far outweigh our free moments, and sometimes they outweigh our joy.  This Sandwich Generation life reminds me of an old-fashioned yoke - one heavy bucket hanging on each shoulder, struggling for balance.  We grow accustomed to the feel of disappointment.  We delay gratification to the point where we rarely feel gratified!  And while each of us find moments for laughter and fun, we Adults rarely have something so incredibly momentous to look forward to that we ourselves didn't have to shoulder the entire responsibility of planning and paying for ourselves. 

Make-A-Wish focuses on the children who need one dream to look forward to.  It helps the kids get through so, so many hard times.  Babygirl and I have discussed this trip in some of her most difficult hours.  But the side benefit is for the families.  All I have to do Saturday is get up.  I don't have to make phone calls, arrange last-minute travel plans, run to the bank.  I don't have to gas up the car and drive an hour and pay for long-term parking.  I don't have to hustle reluctant unprepared people.  I don't have to load a trailer full of beach towels and bikes. 

I get to enjoy the Tingle.


Wednesday, July 10, 2013

Third Year, Week 12 - Packing for Paris...

I just realized that I started this blog two years ago this week.  We've come quite a long way!  Babygirl picked her Make-A-Wish trip the week before she received her kidney transplant.  And now we are packing.

Babygirl has loaded up her suitcases, thankfully AFTER asking for some guidance.  I suggested that she put her clothes together by day, undies/bra/shirt/pants (or whatever).  Pack an empty pillowcase to use for dirty clothes. Use double layers of ziplock bags for anything that could leak.  An hour later she came downstairs and said, "I need bras."

I can see why she wouldn't really know this until she tried to pack 8 days worth of outfits.  She's been sick a long time, attending school a maximum of 3 days a week for months.  Her medication has caused some size adjustments.  And I am the Queen of keeping up with the laundry.  I also understand that you can run to the grocery store in something that doesn't look as nice as what you'd want to wear to a lovely bistro in another country.  In fact, I know all this so well that I went shopping for the same item for myself Sunday afternoon.  Babygirl was with me on that shopping trip.  And I specifically asked her then if she needed anything.

It is a testament to how much I love her that I didn't simply kill her, pack her in her suitcase for the trip  and hope for lost luggage.

I've mentioned more than once how little I like shopping.  But some shopping is worse than others:  Shopping for bras and bathing suits is nearly guaranteed to make any woman, however lovely, unhappy with herself.  And add 'teen-aged' to the above sentence?  OhDearLord.  Just ask Citygirl how much fun THAT is.

Sometimes you have to turn your irritation inside out and just laugh.

 All three of us went off to Walmart and picked up last-minute stuff for the trip.  Umbrella.  Smaller wallet.  Shampoo and conditioner.  Sneakers for Hubby.  Dog food for our dogsitter to give Simon (he's usually a table-scrap kind of guy).  And (sigh) new undergarments for Babygirl, which required, not unexpectedly, more than an hour in a fitting room.

I will not be the least bit surprised if it turns out NOT to be our last trip there.  I've already made one trip to the pharmacy, and discovered that I need to make another.  We haven't taken a vacation since the transplant, so some of the packing issues are different.  And going out of the country means we can't pre-sort any of our pills!  We can take the sorters, but the pills all have to be in their original labeled containers, so we'll have to sort them once we get there so we can take a days' worth here and there.  Oh - that reminds me!  I need pill bags!  (Those are 2x2" zipper bags for individual doses of medications - seriously one of the best ideas ever).

I am looking forward to that moment on the plane where I smack my head and say, "I completely forgot......!"  Because once you've discovered that one thing, you can finally just relax.


Sunday, July 7, 2013

166 Days....

Every now and then your mind skips backward in time.  Sometimes it goes to a happier place.  Sometimes, it flashes back to your nightmares. 

I don't know why my mind was fixed on dialysis yesterday.  Certainly there were more fun things on offer!  But sometimes you just have to let the evil memories roll.  It's part of the healing process, I guess.

Babygirl was on dialysis for 166 days.  It was less than half a year.  Yet it yawns in my memory as a much, much longer time.  We were exhausted.  We were stressed.  We were always afraid.  And every single phone call was a heart-racing adrenal-squeezing event.  I can feel my chest tighten and my breath quicken just thinking about it all. 

It's really difficult to discuss.  It  was stressful in such a multitude of  ways impossible to narrow down what specifically was the MOST stressful about it.  Not ever really sleeping.  Not ever even for a minute being able to relax our vigilance about infection.  Never losing sight of the tube hanging out of Babygirl's belly and the horrific risks it posed.  The fights with insurance to get things paid for.  Not knowing if we could keep our heads above water financially well enough to keep her alive.  Not being able, ever, even once, to keep her pain-free for a single one of those 166 nights.  Knowing that my child would frequently suffer that pain in silence so I could sleep.  And that I would let her.

Babygirl was ELEVEN years old.  Eleven.  She was given the blessed gift of eleven years of childhood.  And for the most part, her childhood ended with dialysis. 

Oh, don't get me wrong.  I understand that she is still a child.  But she is not a carefree child.  She has to 'be careful' and not forget 'she can't have that' or 'can't do that'.  At a birthday party yesterday there were lovely platters of strawberries, blueberries, raspberries and sliced watermelon.  She could have none of it (until our thoughtful hostess prepared a special platter of watermelon just for her). Things everyone else takes for granted are forbidden, restricted, limited.  She has to plan WAY ahead.  Do we have enough meds with us to do that extra two hours of play or to stop and eat dinner out instead of at home?  And she pays a price in pain for more things than anyone who doesn't know her well can begin to imagine.  And for the most part she does it with a gracious smile on her beautiful face. 

I try, really really really try not to borrow trouble, or to look ahead at what I know is coming.  But it sends chills down my spine when I face the fact that someday she'll need dialysis again.  Don't tell me how 'lucky' or 'blessed' I am.  I know those things are true more deeply than anyone.  But I know first hand what blessings cost.


Friday, July 5, 2013

Third Year, Week 11 - Perfect Summer Days.....

I'd forgotten that I asked for the afternoon of July 3rd off.  It happens.  I checked my Wednesday schedule at the end of Tuesday and was delighted to realize that Babygirl and I could leave home sooner than expected.

We arrived at 'our' amusement park late in the afternoon and found it nearly deserted.  We hiked the mile in to ride our favorite coaster (we didn't have to wait even a second to sit in the last car), and stopped at the 'wet rides' along the way.  It's the first time she's done the big splash down ride - usually it's far too cool for us to want to wander around soaking wet.  We also managed the white-water raft ride.  Right after THAT soaking, we hiked into the water park section, only to discover that they were near to closing.  So in the 17 minutes that we had, we threw ourselves onto inner tubes and floated on the lazy river. Twice.  It was warm, comfortable and as relaxing as a massage.

We stopped for dinner on the way home at a place I've been intrigued by the look of the for years as we pass it on our way to the highway - a large, traditional-looking 1950's style diner.  The food was good, the chrome shiny inside and out, and it was more affordable than any meal inside the park would be.

The Fourth was lovely - warm and breezy.  We spent much of the day on Aunt Kelly's front porch enjoying the wonderful fresh air.  And those Bolivian dancers!  What a great parade.  Someday I want to come to Philadelphia for the Mummer's Parade on New Year's Day.   It's so much fun to see a few string bands, I can't imagine how awesome it would be to see dozens of them!

This morning dawned sunny with a gentle breeze as well.  I think we'll be able to do some water rides on our way home, although I expect the park might have quite a few (thousand) more people in it than it did two days ago.

The little gaps in our 'real lives' matter so much.  The rain and storms of our long spring this year have made summer feel like it hasn't really started until now.  The gifts of time, sunshine, family, friends and joy are as rare.  Having all of those things together in one place at the same time:  Priceless.  This gift of repetitive lovely renewing weekends has been amazing.  Even if it leaves me with my hair standing on end from pool water.


Tuesday, July 2, 2013

A Doctor-Free Journey......

Each year we travel to Philly for the 4th of July.  Picnics with family, parades and fireworks are part of our usual tradition, from long before Babygirl's kidney failure and transplant.  Two years ago we had to scold Uncle Joe for giving Babygirl a Monster drink without reading the ingredients label (kids in kidney failure cannot have potassium-laced drinks!).  Last year we fit the celebration in between doctor visits.  This year we get to go simply for the fun of it!

What a blessing it is to simply be able to celebrate with family and friends without the hypervigilance that has marked our past two years!  I'm looking forward to drinking wine from a red Solo cup and watching the handsome Bolivian folk dancers march in the Glenside parade.  Babygirl and I might get to enjoy the waterpark side of our favorite amusement park on the way home! 

I'm stoked.