One Weekend, Many Milestones

Wow... has it been that long?!?

Early Saturday evening, the five of us got together for a special dinner (Chinese buffet, of course!) Friday was Dad's 83rd birthday. Friday was Cousin H's 57th birthday.  Sunday is Mom's 79th birthday.

And Friday was the 3rd anniversary of the Pipsqueak's Gotcha Day.

Three years ago today (Sunday), my sister and I were bouncing, rattling, and rolling our way from Nanning to Guilin with a still-unfamiliar baby girl on a bus ride we will remember (although perhaps not always fondly) for the rest of our lives, then had dinner by windows looking out on real-life postcard beauty.

Three years plus one day ago today, AJ swore to a Chinese magistrate that she would provide for the Pipsqueak's medical & educational needs as her parent, and then we adventured together into a very Western WalMart in very Eastern Nanning.

Three years plus two days ago, my sister got to hold her daughter in her arms for the very first time, and our family was changed in ways none of us could anticipate in that wonderful moment.

I've lost count of how many hundreds (thousands?) of times during a meal someone has asked, "What did we all talk about before Miri was here?" while marveling at how such a tiny person can occupy all the attention of a roomful of adults (and at how much entertainment value can be packed into such a small package).  Not a day goes by at work when I'm not greeted as "Uncle Brian" or asked, "...and how is that little niece of yours today?" by staff and/or residents.  Nary a phone call is made between family members without at least one story of the Pipsqueak's exploits, and if she is present it is a given at this point that she will want to say hello herself (sometimes literally saying "Hi!" and then "Bye!" and giving the phone back to a grownup, other times babbling on until the adults at either end have to beg to be allowed to speak with one another).

In short, that quiet, nearly bald little baby being handed to my sister in the photo above on a hot July day in 2010 is such an integral part of our lives that none of us can imagine what life would be like without her being near the center of it all.

Happy Birthday, Dad!
Happy Birthday, Cousin H!
Happy Birthday, Mom!

Happy Gotcha Day (plus), Pipsqueak!

We're all looking forward to many, many more.

---

Another major milestone was reached on Saturday evening after dinner. Upon returning to AJ's house, while our folks helped her with another project, I took down all but one of the remaining baby gates.  Yes, those baby gates. The ones that were so difficult to mount that they earned their very own post back in 2011. Even more milestone-ish, unlike the last time my niece "helped" me with the gates (see the old post for details), at her insistence she actually did a fair portion of the work herself this time.

Oh, sure, there's still one in place at the top of the main stairs (AJ is worried about the Pipsqueak starting to wander out into the hall at night in the dark, too tired to clearly see the 1st step down onto the landing), but to quote Miri when I told her I was going to take down the baby gates: "Yay! I a big girl now!"

They may be a touch bittersweet, but we all have smiles on tonight.

A Special 3rd 4th

Note: If you're looking for my post about Teresa Bartlinski, it's the post immediately before this one (or just click HERE). It will remain online as long as this blog is operating.

Happy day after Independence Day, everybody!

My sister is a fireworks fanatic; it's not the Fourth of July if there aren't fireworks (although she'll accept them on the 5th or 6th if the weather makes it necessary). As much as I enjoy watching them, it's AJ who's pushed us each year to make sure we get to the fireworks show on time.  We used to go down to the National Mall in DC, to roughly the same spot every year, sometimes with friends and/or other family members in tow. No matter what was on the schedule, AJ's fireworks (and Brian's photos thereof) were THE main attraction. A lot of different things combined to make that increasingly difficult and decreasingly pleasant so we began seeking out other venues. Eventually we stumbled onto the annual fireworks in College Park and that became "it" for us.

This is from the 2008 show... it's a lot less "jumpy" in QuickTime
format. The video was taken with my old Palm Zire 72 PDA!

AJ and I are both alumni of the University of Maryland's College Park campus, so it was kind of a homecoming for us. We'd get to Lot 1 around 6:00pm and, after the Annual Argument Over Where To Park, would set up shop in the dirt/grass strip along one side of the lot; close enough to hear the live music, an easy walk to all the concessions stands, and great seats for the fireworks show (we usually could see the launch team moving between the mortars during the show).

It gets a LOT more crowded as time passes...!

July of 2010 was a little different; we all knew that AJ and I would be leaving for China within a week, and mixed with the strong feeling of anticipation was a little poignancy over the knowledge that it was the last July 4th for "just the four of us." The weather was good, the show was good, and by the time we had gotten home we were all ready to have the Pipsqueak experience her first Independence Day fireworks show with us the next year.

Alas, it was not to be.  July 4th, 2011 was a fine, hot, sunny day... and by mid-afternoon it was obvious even to AJ that the Pipsqueak was not healthy enough for us to go see the fireworks; we were all exhausted, and she was crochety and feverish. "Okay," said my sister, "We'll skip this year, but we'd better go next year!"

Fast-forward to July 4th, 2012 -- and guess what? Our schedules were a mess, we were a mess, the weather was iffy... and the Pipsqueak was crochety and feverish. I could see my sister's frustration when she said, "Okay, but I'm going to see fireworks next year if I have to go by myself!" (To this day I'm not sure she didn't mean it.)

This year, Independence day dawned hot and bright, and I managed to drag myself out of bed early enough to get to Mom & Dad's neighborhood to see AJ & the Pipsqueak "marching" in the community parade. The parade ends at the community pool, and Miri (under Mommy's watchful eye) went wading in the kiddy pool. It was funny to see how carefully she held up the front of her skirt to keep it dry, never once thinking about the back end that was trailing in the water behind her. Even a spirited wringing-out session failed to dry the Pipsqueak off, so it was back to Grandma & Grandpa's (and eventually home) to rinse the chlorinated water out of her special patriotic outfit and pop it into the dryer. (My niece laughingly declared, "I naked!" when she peeled off her damp shirt in the middle of Grandma's kitchen... and when I foolishly pointed out she wasn't really because she still had some clothing on, she quickly stripped off everything and ran laughing around the house 'til Mommy corralled her and got dry panties & shirt onto her little nudist. We'll have to work on that... <sigh>)

A few days earlier, we had learned that a dear old friend would be in town without her family so it seemed only natural to invite her along... which quickly became an extended group invite, and suddenly "the five of us" became fifteen, including three kidlings of assorted ages. We planned to form a caravan from our folks' house with AJ's van in the lead, but there were complications (primarily the usual, "has anybody seen the cat?!?") so we arrived roughly an hour later than planned...

...and good ol' Lot 1 was jammed, nary an open spot in sight. Eventually we found several spaces all the way down at the far end of the lot, so we parked and set up our chairs and blankets and coolers and basinette and boxes and tote bags and everything else on a small patch of grass by one of the buildings, where all four(!) generations settled down to a slightly messy picnic and general conversation. (We all moaned when, as I complained about having to shake about 1/4 pound of grass seed out of one folding chair, one friend laughingly pointed out, "well, it is a lawn chair, right?")

The Pipsqueak had been getting a little whiny during our search for a spot ("Are we at the fireworks yet, Mommy? Are we at the fireworks yet, Mommy? Are we at...") but once we were all out of the van and things were set up she returned to her usual happy, highly energetic self. She played a little with the same-age son of some of our friends, ran around a bit, went on a walk with the little boy & his father, and then befriended the little girl whose family was on the blanket next to our group and happily caused all kinds of fun mayhem with her (accompanied by many graciously-received apologies from AJ).

The first big chrysanthemum shell burst overhead at 9:15 as scheduled, and for the next thirty-odd minutes Miri finally experienced her first Independence Day fireworks show. She bounced around on AJ for a while until I put down my camera and asked if she'd like to stand on me instead (my poor sister really needed a break by then!), then stood / bounced / sat / squirmed / jumped(!) on me for a while before returning to keep Mommy company. Most of the time, the little girl who ducks and cringes at most loud sounds was enthralled by the banging and booming of the shells, laughing and yelling out loud with each explosion and truly having a grand old time with it all.

Somehow, despite always wanting to get some good fireworks photos, it seemed perfectly natural for me to put aside my camera so my niece could stand on my knees and jump up & down on me.  We'd both laugh at my occasional pained "oof!" and somehow I didn't mind in the least when I had to crane my neck to see around her, or explain I couldn't see the fireworks if I held her upside-down, or had to gasp for breath when she sat on my chest and bounced. AJ, as tired as she was, thoroughly enjoyed finally getting to see her beloved July 4th fireworks, and it was made all the sweeter when her daughter ran back to her to watch from her Mommy's lap. The Pipsqueak's Grandma & Grandpa kept glancing over at their granddaughter, watching her antics almost as much as they watched the fireworks with quiet smiles on their faces.

We may have had to wait a couple of extra years, but as the saying goes "third time's the charm" and we finally brought the Pipsqueak to see her first Independence Day fireworks show... and it was every bit as good and happy as we had ever thought it would be.  (We know it was just as big a hit with the Pipsqueak because today while out shopping with her Mommy, she kept spinning around in place with her hands in the air saying, "I'm a firework! Bang! Boom!")

Happy (day after) Independence Day, everybody!

A Time to Live, A Time...

SPOILER ALERT: This post is not about the Pipsqueak... and it is very much not a happy post, either. You could, in fact, consider it a eulogy.

This is especially tough to write just after putting up a happy post about Miri's 4th birthday, but it's a story I feel I have to tell. It's also a long post because it's not something that can necessarily be told in just a few words... and it's worth the telling.

---

I still remember a hot, muggy July day in Guangzhou back in 2010; the Pipsqueak was still just a tiny little thing, trying to adjust to the whirlwind of changes that had flipped her world upside down and inside out. Our group was heading out the back entrance of the White Swan and stepped aside just before reaching the doors to allow a family to come in. I immediately noticed the father's Baltimore Ravens shirt -- landesman! -- and the families struck up a conversation.

During the usual exchange of "so cutes," the family's newest member caught my eye. She was a quiet little girl (a toddler, really), sitting in her stroller while giving an ice cream cone a serious working-over. I kinda-sorta caught a bit of AJ's conversation with her mother, words like "surgery" and "serious" and phrases like "as long as we can" floating through my happily oblivious talk about football and such. I don't know why, but I found myself just watching the little girl for a few moments; it was only as everybody started moving again that I realized that one of her arms was shorter than the other, the hand much smaller than the other. (I almost typed, "than it should have been" but in her case that's not the right phrase.)  Somewhere in the back of my mind, that normally-silly inner voice told me I should remember her.

Later that evening, as we spoke about the "local" family we'd met, AJ mentioned that they had made special arrangements because the little girl had a heart problem so serious they weren't sure she would survive the flight back to the States. I don't know how I missed that earlier in the day, but it was a bombshell that stopped me in my tracks. There we were, finally getting to bring Miri home, already crazy-mad about her... I couldn't begin to dream what it would feel like to lose her just by boarding the flight home. AJ added that part of what I'd overheard was the statement that they wanted the little girl to know what it was like to be part of a family, to be loved and cared for, for as long as possible... and that if she made it Stateside she still might only live for a few months.  I decided at that moment that the family was absolutely crazy, but in the absolutely best possible way; I didn't (don't) have the wherewithall to deal with the emotional surety of losing a child and couldn't imagine where they found the strength but thought theirs was one of the noblest sentiments I'd heard in a long, long time.

For the next few weeks, the little girl with the ice cream cone and her family only floated through my memory a few times, usually just as part of general reminiscing about the trip.  Eventually, though, the memory began popping up more frequently, and I couldn't help but wonder if she'd made it to her new home and had a chance to experience being part of a loving family.  I finally posted a question about her in the Rumor Queen's adoption forums, and soon received an answer of, "Do you mean this family?" with a link to the Bartlinski family blog -- and it was indeed them. I was happy to read that the little girl had made it home alright but that her folks had discovered she needed both a new heart and new lungs, but each was too fragile to allow a transplant of the other. Despite that, Teresa was diving into her new life with a gusto that could shame people many times her age.

Over the next couple of years, I -- like a constantly-growing number of people around the world -- followed Teresa and her sisters through the family blog. They were experiencing trials and tribulations and medical procedures galore, but their strong faith and even stronger love for each other helped them climb each mountain one at a time. Against all odds, often improving and then worsening agin, Teresa's condition improved in tiny increments to the point where her doctors said that maybe, just maybe, it might be possible for her to survive a heart transplant, if a ridiculously long list of "ifs" could be checked off.

Teresa, in the meantime, was living. I don't mean to say that she survived, or was just staying alive; she was living the way most of us wish we could.  Did she need to be hooked up to an oxygen bottle? Sure, but so what? Did she run out of energy quickly with little exertion? Yes, but who cares? Did she have one arm not quite "right" to other people? Yeah, but no big deal! This was a little girl on a mission: she was going to live her life to the fullest, having as much fun as she could, experiencing as many activities and places and things as she possibly could. She was (to quote her mom) the boss, and she took charge of her own life and happily squeezed every minute out of every day and drank deeply of it all.

I remember watching Teresa at the FCC's Chinese New Year celebration back in 2012.  She was hooked up to an oxygen bottle almost as big as she was and yet seemed to be everywhere at once -- checking out the silent auction, sitting with her family to eat, moving around with other kids, just having a good time and totally ignoring (but not being ignorant of) her own physical limitations. [At one point, when she reached the end of her long oxygen line, one of her sisters walked over and, without being asked or told or apparently even having a second thought, picked up the just-smaller-than-her oxygen bottle and began lugging it around behind Teresa so she wouldn't be held back. That should tell you a little about what kind of family the Bartlinskis are.] Later that day I found myself in a competitive game with Teresa, rolling a ball back & forth, with her laughing "I beat you!" any time I missed catching one of her surprisingly fast rolls. This wasn't a girl with a medical condition or a disability; this was a girl who was in the game to play and win, and who was having a blast no matter what.

I kept following the developments in the lives of Teresa and her sisters on the family blog; surgery, helper dogs, adjustment, surgery, more adjustments, medical appointments here, there and everywhere... Teresa knew she was "different" from other kids but absolutely refused to let that get in her way; she  insisted on Living instead of just living, never ignorant of her physical limitations but always pushing herself to do as much as she could for as long as possible.  I think the high point was when she performed in a dance recital without (at her insistence) being hooked up to an oxygen bottle.

All through this time, the family waited for a new heart to become available, a heart they knew could save Teresa's life while simultaneously signaling the end of another young life. A few months ago came the posting everyone had been waiting for: "They're on their way to the hospital!" Unfortunately, the heart turned out to be a bad match and surgery was put off. Then again. And then again. Through it all, the family's faith remained strong, and Teresa continued to be The Boss and barely seemed to blink at all the things that everyone else considered "going wrong." Of course she was disappointed by the false alarms, but she remained absolutely dedicated to living life as fully and completely as anyone possibly could.

And then, finally, a heart was available, and it was a good match. Teresa's condition wasn't as good as it had been, and things were less sure than they had been, but she and her family and her medical team grabbed the golden ring and two weeks ago the vibrant, happy little girl finally underwent heart transplant surgery. True to form, Teresa was wheeled into the OR wearing a princess gown and tiara, carrying an extra tiara for the surgeon to wear.

I (and many other people around the world) hoped for a happy ending, unlikely as we knew it was... but first one ventricle had trouble, then the other didn't work right... a broken cannula almost caused Teresa to bleed out... her systems were so damaged she couldn't come off life support... and Teresa continued to beat the odds. Her will to live was so strong that she kept overcoming medical complications (and outright disasters) one after the other, repeatedly waking up despite massive doses of sedatives to communicate as best she could with her family and the increasingly amazed medical team. But then there were more complications... more surgery (again wheeled into the OR with her princess gown and tiara!)... more heart problems... and finally her body rejected the donor heart. Still, she kept waking up, communicating with people around her, even trying to sing a favorite song along with a nurse; anything to keep living, constantly showing everyone who knew her or knew about her the value of every precious minute.

There was still a chance for things to work out the way so many people were literally praying for, a risky surgery that would replace the rejected heart with an artificial unit that could keep Teresa's increasingly frail body going for at least a few months, hopefully buying time for another natural heart to become available... but her systems were so damaged that work had to first be done to try to get them ready for the artificial heart. By this point she had been bleeding so much, and her lungs were so weak, and her respiratory system was so weak and her circulatory system was so stressed and... and...

...and when the surgeon was absolutely, positively, completely sure she had done everything she possibly could do but had run out of options, she prepared Teresa as best she could and wheeled her back into the recovery room for a few last, precious minutes in the arms of her loving family until even that amazing will to live of hers could no longer keep her damaged body functioning.

The bright, shining light that Teresa "Fang Fang" Bartlinski brought into the world (and that dimmed and flickered only a little bit at the very end) finally went out at 3:23pm Eastern Time, July 1, 2013. She was just 6-1/2 years old.

---

Ann and Ed and their other kids had wanted to give the ailing little Liu Fang the chance to experience being part of a loving family, and they can be proud of how well they succeeded; theirs is an example that should make everyone sit up and pay attention. But even more importantly, there is the example set by Teresa herself.

This is a little girl who beat the odds as a newborn, then as a baby, then as a small toddler very much alone in a Chinese orphanage. She beat the odds again when she made it safely to the United States, and kept beating the odds every day she stayed alive.

Teresa didn't just survive. She didn't just stay alive. She Lived, with a capital L. She knew she had physical limitations but she kept beating the odds because she chose to do all that she could instead of allow her physical limitations to define who she was. She could have easily been a two-legged pity party, retracting into her own tightly-wound ball of unhappy dependence; instead (with the loving help of her family) she took charge of her own life, making herself "the boss" whenever, whereever, however she could. Teresa took the biggest bites of life that she could, always refusing to be limited or defined by her physical limitations (some of which other people would erroneously refer to as "handicaps" -- usually only until they got to know the little lady in question).

I think the reason I remembered Teresa so clearly was because of that amazing spirit of hers. I didn't notice it because I'm psychically sensitive; I (and many others) noticed it because her will to live life to its fullest, free of self-pity, literally shone from her little body like the light from a carbon arc. That first time I saw her back in Guangzhou, I remember thinking she wasn't just enjoying that ice cream cone but was experiencing it on multiple levels -- and since then I saw repeated examples of how completely she experienced life and everything it had to offer.

The physical manifestation of the little girl that was Teresa Bartlinski is gone, and that is a loss many of us will be mourning. But left behind (as small a consolation as it might be) is the lesson she so effortlessly, constantly, lovingly taught everyone lucky enough to know her: love is to be shared and life is to be lived, to be experienced, to be enjoyed. It is something to wrap oneself around and hold onto as tightly as possible with every fiber of one's being while simultaneously being completely and totally wrapped up inside it.  Teresa's body presented a set of limits that she acknowledged but that she never allowed to control or define who she was; we should all remember that the next time we feel too tired and achy to bother getting up of the couch to enjoy a beautiful day (or even a walk in the rain).

When I watch the Pipsqueak at play, I see the same joie de vivre, the same un-self-conscious grabbing onto whatever life is offering in that moment, squeezing out every bit of what it has to offer, and drinking it to the last drop. I can't help but think that the lesson taught by Teresa will help me help Miri shepherd her own love of living through the troughs and valleys and unkindnesses and limitations of everyday life... and (I hope) help me keep everything in the proper perspective for myself as well.

I will always remember Teresa and the lessons she taught.

I just hope I can live up to her example.

Hippo Birdie Two Ewes...!

Holy moly, has it really been that long since we met that bald, quiet little baby in China?!? I guess it's official, now -- no more toddlerhood, the Pipsqueak is officially a "little girl" because she turned FOUR a couple of weeks ago. (Yeah, Dude, she really is that old -- you better get used to it!)

AJ & Miri agreed that last year's party at Little Gym was a lot of fun, so we returned to the original site of the crime for a repeat this year. Rather than blathering on & on about the party, I'll let my camera do (most of) the talking...

The party started with everyone either hugging the Pipsqueak or sharing "high fives"

Once the greetings were done, semi-organized chaotic fun ensued!

Back in junior high, most of the girls considered these to be torture in gym class...
For these kiddos, they're fun!

Once again, my niece shows a far better sense of balance (and less fear) than any of her grownups...

The kids demonstrated boundless energy... the grownups slightly less. :-)

It wasn't just the balls that were bouncing!

They've slowed down, but only because it's part of the game...

Just a quick pre-pizza and cake shot of the party room.

Grandpa knows a good photo op when he sees one, sore hip or not!

Remember, I said they slowed down only because it was part of the game...

Ooh, maybe they've finally run out of energy...?

Nope -- they were just "riding" the bouncy thing while it inflated!

As the party moved from burning energy to recharging, I took a quick shot of Miri's gifts.
Thank you, everybody!

Organized Chaos, Stage II: Pizza and birthday cake (with crowns and tiaras for all)!

I've forgotten their names, but the Little Gym crew were fantastic -- they even
provided candles for the cake when AJ realized she'd left hers at home!

The organized party wound down shortly after the kids finished inhaling the pizza & cake, and the family (and some extra-helpful friends) scrambled to help the Little Gym crew clean up -- Miri's celebration finished just after 4pm, and there was another party scheduled for the same space at 4:30! We managed to get everything collected, wiped down, picked up, etc. and headed back to AJ's house for a little after-party with some friends.

Yes, my sister does indeed have a pink castle tower filling her living room, compliments
of the Pipsqueak's Grandma and Grandpa!

One by one, the gifts were pulled from the bag and all that careful wrapping
was joyfully ripped to shreds...

Even the newest member of the group, just 2-1/2 years old and only home for a few
months, got into the act!

The big party may have been at Little Gym, but my sister isn't going to miss out on
a chance to decorate the house for her daughter's birthday!

One of the girls discovered AJ's stash of bubble-making toys, so we had to shoo the girls
out onto the deck -- where they proceeded to have a bubbly blast.

I've included this shot because, well... you got any idea how hard it is to get a good shot of a bubble?!?

Somewhere along the line, the Pipsqueak managed to get pizza smeared in her
hair and aaaallllll the way down her back. Yes, her BACK. How do they DO that?!?

Slowly, the chaos began winding down... The castle's on its side to allow the bottom to
air-dry after an "ak-see-dent" with a cup of soda...

Eventually, even the kids' batteries ran down, and things returned to a more normal level of chaos. (A couple of days afterward, AJ laughingly told a friend, "I only had five kids at the house but it felt like twenty!") The gifts were all sorted (we managed to keep Miri from opening all the packages at once, convincing her that if she only opened a few each day it would be like extending her birthday) and the leftovers all divvied up by... omigawd, is it really 10:30 at night?!?  We knew it was really all over when Dulce & Xuan cautiously reappeared from their hiding places, looking a bit bewildered at all the new toys strewn around the room...

Although Miri showed no sign of slowing down while we were at the house, AJ told me she conked out just minutes after we all left -- a sure sign of a successful and happy celebration of her birthday!