The Bartlinski Bunch

" Teresa "

" Teresa "

Teresa "Fang Fang " Bartlinski

Teresa was born on December 25, 2006 in China. She was born with a very complex heart condition. In July 2010, GOD added Teresa to our family through adoption. We have been blessed with 9 wonderful children. Gods grace has woven us together as a family. Upon bringing Teresa home from China we unfortunately learned she not only needed a heart transplant but also a lung transplant. Her doctors feel she would not survive this operation. Please help us to pray for a miracle for Teresa's heart and lungs to be healed. She is a very special little soul who has touched so many lives around the world ...
I BELIEVE IN MIRACLES!

Thursday, July 4, 2013

Thank you Brian!

This was emailed to me this morning by a friend we met in China. I asked him if I could share it with the world and he said yes. It is a beautiful remembrance of Teresa's life. Thank you Brian!

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.
Brian

14 comments:

Leslie said...

Praying for your family.

Anonymous said...

Beautifully said. Thanks for sharing this lovely email.

Nicole said...

What a beautiful tribute to Teresa and her indredible family !
I haven't followed for long, but was really touched, here near Paris...
Yesterday as I woke up I saw Teresa's face saying "I love you more"
There was your post with the same words...
We hurt so much for you all and we hardly know anything about you. We keep you in our minds and prayers for the times to come.
Dieu vous bénisse !

Emma said...

I've been away a few days and hadn't heard the sad news. Crying here now, across the ocean from you. Sending many prayers your way.

Blessings,
E x

Heidi D said...

What lovely memories to share

Anonymous said...

That says it all right there n I will definetly share Teresa's story because its just not a story of a little girl but it is the story of a little miracle or with not a broken heart but a big heart! Her family I will never 4get, u r blessings that I really admired n will tell my kids about your story n I pray they tell their kids about your story or shall I say your miracles!


Thank you again
The James n Hilton family

Anonymous said...

Brian, You have truly captured the soul of precious Teresa! I have been her dance teacher for the last couple of years and she was the most determined little dancer. Even as her need for more "rests" grew during class, her lips blue, her breaths labored, and just when I thought she was finished for the day, she would pop up, jump into line, and do her steps. We called her Tenacious Teresa - never giving up!! Her love of life was truly inspiring. Their ballet song this year was "How to Believe" and the lyrics are perfect (by Bridgit Mendler):
Hold my hand and fly
Never say goodbye
Cross the open sky
Leave the world behind
I will be alright
If you stay by my side
Tiny shining star
I know who you are
Your're never very far
We'll never be apart
Sparkle in my eyes
Light the sky tonight
Spring and summer
Love and laughter
We'll live happy ever after
We'll fly higher than we thought we'd be
Because you showed me
How to believe

Teresa taught us how to believe!
Thank you Teresa. And thanks to the beautiful Bartlinski family for sharing her with us.

Jaclyn Carlisle said...

Wow! So beautifully said. What a wonderful friend. Im so sorry for your loss. Teresa has effected many strangers around the world and managed to make everyone fall in love with her. God Bless you all
Jaclyn in Florida

Aus said...

Brian, Ann and family - in many ways I envy you - I would so much have loved to have met Teresa in this world...because I too have "felt" the wisdom of child. There were many times here that I heard Teresa referred to as an "old soul" - I know that same wisdom through our adopted kids - there IS a wisdom that our children have - they are, in fact, special...

I remember Liu Fang from the "before time" - when she was know as "Lucy" - and I remember the joy I felt when her file was accepted by a family...and I followed the journey and Teresa's life - and how she LIVED!

I look forward to the time when I can share one of her hugs - and maybe we can have a little race - and I can smile at her in her princess dress...

and for now, while I mourn her passing - I celebrate her life.

Ann and family - we're holding you in our hearts and prayers -

hugs - aus and co.

Wanda House said...

Thank you for sharing this message about Teresa. It certainly captures the essence of your precious angel. My prayers continue to be with you and your family. May the Lord give you strenth and comfort in the days and weeks ahead.

Anonymous said...

The world really lost someone special. Thank you for sharing this. We can all learn something about how to live our lives from reading about Teresa.

Anonymous said...

Beautiful tribute, Brian. I can't imagine the loss her family feels, but I don't think the world could ever lose the spirit she embodied. I believe with my whole heart that she will return to touch her family many, many times. Because she's THE BOSS. Love to all of you -

Annette Duty said...

very beautiful tribute - I know that her family is hurting from the missing her. I also know she's amazing in spirit and that always lives on. We will all see her again - we will all see her in a Tiara. My daughter is adopted from China as well. We are going to a birthday party tomorrow for another little girl from China. We bought a very special Tiara for her, also. Our angels are all princesses from China and we are all so very blessed to love them. I pray for this family. I pray for their hearts and the depths of their souls as they go through such an unbelievably difficult time that words are just too small to express our sincere sympathy and how much we just ache for this family. I look at her older brother and know that he adores his whole family and I look at sisters and her parents and I just have no words to say how very sorry I am. Teresa made such a big impact on all of us. Her sheer joy inspires me. Time will go by. But I can definitely say, I'll never, ever forget her. Never. Anytime we go to her page and the music says "Never say good-bye", my daughter runs to the computer and loves that music. She will always inspire us.

God Bless Teresa and God Bless her family and friends. Please God, please be with everyone as they grieve losing her. Please God always remind them that we will meet again. We will "never say good-bye".

Love,
Annette and Alexandria (Teresa's "China sister")

Sharilinda said...

Wow.