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.
My niece joined the family on July 12th, 2010. This special young lady's mother is my younger sister, which in classic Chinese culture makes me her Jiu Jiu (舅舅-- thus the title of this blog. Here I intend to semi-regularly post reflections, thoughts, stories, and assorted whathaveyous pertaining to our trip to China, adoption in general, and (mostly) watching my niece grow up. Since the web is a very public place, I will attempt to maintain my family's privacy while telling the story... but I invite you to follow the blog and come along for the adventure!