Thursday, August 26, 2010

Lori Tullos Barta

July 24, 1971 - Aug. 19, 2010
(Funeral Aug. 24, 2010)

Lori lived only 39 years on this earth, and in that time she was able to have significant impact on both individual lives in it, and on broader issues of the world - particularly the need of individuals with learning disabilities and down syndrome.

Lori's impact, though, is not at an end - since she will continue to live in the hearts and minds of those that knew and loved her, those that knew of her in her life, and those that only learn of her after her passing and still miss her now. As one of her apostles, I can give testiment to that fact that I am who I am as a leader, and in many ways as a person, because of the impact Lori had in my life as one of my closest friends.

From about 1997 to 2005, we were very close friends and during that time each of us married our spouses (she married Adam in 2001, and I married Heather in 2003). I did her bridal photography, and that was such a great day. I proposed to Heather with Lori's help in rigging a "White Elephant" at Lori's Christmas party in 2001 for me to surprise Heather. Our wedding anniversaries are in fact one day off each other. But as with life when each goes their own way, and takes on their own responsibilities, we had less time together as close friends in later years. Both Lori and I acted as President of a local non-profit for 2008 and 2009 - I with YouthLaunch and she with Down Syndrome Association of Central Texas (DSACT), she had 3 children (one with down syndrome) and I had my own serious health problems including miraculously surving sepsis in 2008, and surviving a serious fall in 2009. We were not able to talk as much in the last 5 years. Through Grace, though, we were able to reconnect in Feb. 2010 and made an effort to periodically talk through July, 2010. I had lunch with Lori when her heart problem was first diagnosed and I am glad that I was able to tell her then how much she had impacted my life, and that I loved her dearly. As someone who does credit her for my ability to have impact in the world, I want to make sure others know her story, at least in part.

For those that don't believe I once was an introvert and shy, I was. Lori was one of the main reasons that I am not now. She had a gift of seeing people for whom they could be, for their possibilities when others would write them off, and not simply seeing them for whom they appeared to be. She provided the understanding that people need to feel included and cared for, and she would invite them into her large social circle, and then engage them and lead them to have social impact. She did not do this in so many words, but would make you think you were doing it only because it was good for you, all the while she wanted you to be part of the change that she foresaw. She did this with the Austin Young Lawyers Association, with DSACT, and many other groups. And more importantly, in her wake she has left a virtual army of leaders all shaped and impacted by her own leadership. These leaders independently are doing similar good work, but more importantly we are now going to help ensure that Lori's mission in life does not end with hers, but will continued well into the future, in her memory.

The story of her death is documentated online at her journal site, where the first entries were her own. After she went into surgery on Friday, August 13, 2010, the entries were then from her husband, Adam, and her step-mother, Susan. So many people were monitoring the journal through her last days that the entire website crashed for over a day until they could upgrade their servers and system. Many of her family, and friends from DSACT and other parts of her life, stayed with Lori 24/7 in the hospital and many more stayed in the ICU waiting room through the week so that she was never alone. From my time in the ICU waiting room, I learned that many of her most special qualities were in fact "Tullos" qualities, made part of her by a family that grew from 10 siblings, her father being one, and currently has 80+ awesome members. I also saw the great bond that exists between Adam and his brother, Mark Barta, and the special qualities that the Bartas have, as well.

For those unable to be at the hospital or have direct information from those who were, the journal was often an agonizing process of constantly checking for updates - "how is Lori doing? nothing is posted." Early on, no news was good news since nothing bad had to be reported. Later on, no news was bad news, and most knew it.

What the journal will also tell you is Lori's "Story" that she was not aware of any serious health problem until a few months before her death. She progressively realized that she had some sort of heart issue, and they determined over several weeks (a few prior to her death) that it was a severe mitral valve regurgitation, and that she would need surgery much sooner ... in a matter of weeks. Having to decide location and exact type of surgery, she decided to have a doctor perform the surgery here in Austin, Texas, at the Heart Hospital.

The method of surgery was originally only supposed to take 3.5 hours, but that time quickly passed and Lori was still in the operating room, and her family and friends became more concerned. The surgical team could not get her off heart bypass and get her heart to restart, and they had to open the chest cavity and perform a full open heart surgery to try to get her heart restarted. After 12 hours, they had her on a ventricular assist devise (VAD), which was a term her friends and family became way too familiar. In the following 12 hours post-op, as Lori fought to live for her husband and 3 young children (again, one of which has down syndrome), Lori had another 6 hours of surgery in 2-3 periods, as the surgical team tried to keep her at all stable, albeit still critical in ICU. Lori had told me that her biggest fear was that her children would grow up without a mother; Lori's own mother died when Lori was in her mid-teens.

The days after showed periods of improvement, although she never came out of ICU or regained consciousness, and the moments of improvement of any sort were rare and fleeting. In that time, Lori experienced cascading organ failure - from kidneys, to liver, to Disseminated intravascular coagulation (DIC). Lori continued to fight for life even then. Because the Heart Hospital is not equipped to deal with such complex issues following heart surgery, she had to be transferred to Seton Main (Seton Medical Center on 38th Street, Austin) a few blocks away. Seton was amazing to the family and treated Lori as a VIP. At her transfer, though, the concern became more that her pupils were fixed and dialated, which could indicate brain damage. At Seton Main, her EEG showed that she was flatlined with no apparent brain activity. The next day the CT scan showed definitively that she had suffered at some point from multiple strokes and had severe swelling of the brain, which would be unable to sustain life. Our Lori was brain dead. Lori's was only being sustained by a respirator and the VAD, which were then turned off a few hours later. Lori was gone and the countless people that loved her remained.

So that there is a documentation of the sermon given at her funeral, I thought it was important to post it in this blog. It is so moving and I hope finalizes the story of a woman who is very much loved still. I hope you who read this will help share her memory and her story, to ensure that others are inspired to be better than they believe they can be.

From: The Rev. Kelly Koonce
Homily for the funeral of Lori Tullos Barta

Lamentations 3:22-26, 31-33
2 Corinthians 4:16-5:9
John 14:1-6

“[God] does not willingly afflict or grieve anyone” – so the author of Lamentations assures us. But that is not to say that affliction and grief will not come. There are many things that God does not will – suffering and death chief among them – but they are ours to bear nonetheless as inhabitants of this curious creation, this world, this life – so gorgeous and yet so dangerous, so vigorous and yet so frail. Death is a part of life. We know this. Nothing and no one escapes it. Yet, when death comes, it always seems to take us by surprise – not the fact of it, necessarily, but the force of it. When it comes out of place and out of time, it is doubly shocking. It leaves us stricken, short of breath, with puzzled minds and broken hearts.

Lori Barta died too soon. It is not sensible. It is not fair. Why do we have to be here today, doing this, of all things? How did a routine surgery turn to tragedy? What went wrong? I wish I knew the answers. But I’m not sure they would really make a difference. I’m not sure they would serve to blunt the pain.

What I do know is that Lori lives now in God and God lives in us, which means that she is not as far from us, nor we from her, as we might imagine. What we are grieving is not a relationship that has ended, but a relationship that has changed. Lori’s light has not been extinguished. It continues to shine in the life of her family, in the lives of her friends, in the lives of all of us gathered here and countless others far beyond these walls. Just as Lori burned on this earth with an unrelenting passion for justice and mercy, with a seemingly boundless and indiscriminate love for all sorts and conditions of people, so she continues to blaze, like a newborn star, deep in the heart of God.

The early Christian theologian Irenaeus of Lyons famously wrote that “the glory of God is the human being fully alive.” When I hear that quote, I think of Lori. I did not have the privilege of knowing her personally. And yet, I feel I have met her, in a way, in the lives of those family members and friends with whom I’ve journeyed over the past week – in Adam, Emma, Hannah, and Sarah; in Gerry and Susan, Michael and Erin, Cyndi and Jennifer. And the woman I met in their eyes, in their words, in their laughter, and in their tears, was truly a force of nature. Precious wife, adoring mother, beloved daughter, sister, cousin, and friend, skilled attorney, tireless advocate and activist – Lori devoted her life to improving the lives of others. In 2008, she received the Distinguished Service Award from the Mayor’s Committee for People with Disabilities as a result of her work with the Down Syndrome Association of Central Texas. First as a committed volunteer and then as president of DSACT, Lori worked ceaselessly to raise awareness of the unique challenges facing those with mental disabilities in general and those with Down Syndrome in particular. She developed an Educator Manual and training program for teachers of children with Down Syndrome which remains in use throughout area school districts. She led efforts to educate parents of special needs children, helped develop an Inclusive Congregation Campaign for faith communities, and worked to train healthcare providers to care more effectively for individuals with Down Syndrome.

It is one thing to have faith. It is another, and more difficult thing, to live it. It is one thing to believe the gospel. It is another to embody it in our lives. Lori Barta was a living proclamation of the good news of God. She incarnated, daily, the gospel imperative to reach out to and care for the downtrodden and the dispossessed, the left out and the left behind. As Adam put it, “It was almost as if [Lori] was destined to have a child with special needs,” because she had always reached out to those whom most of us would choose to avoid. Her particular passion for improving the lives of special needs children was born with her daughter Hannah. From the outset, Lori refused to accept the negative assessments and bleak predictions for the future that she and Adam received from so-called experts in the field.

Following a particularly disappointing meeting with a geneticist not long after Hannah was born, Lori composed an email, a manifesto of sorts, to her family and friends. In it she wrote: “Bottom line, [the expert] said, is that there is no cure and Hannah will never be ‘normal.’ We walked into the meeting with hope and came out feeling numb and apprehensive about the future. Well, I refuse to accept that (gee, Dad . . . guess my stubborn streak came in handy after all!)! And that has led me to this 4 a.m. e-mail to you all. What is ‘normal’ anyway and why is that something to strive for? What is it that I really want for my children? When I strip away all the misplaced expectations and get down to basics, my wish for [my children] is this: (1) That they will be HAPPY; (2) That they will know they are LOVED and love others; and (3) That this world will be a better place because they are a part of it. So here I take the first step in trying to ensure that others love and value our children (and all children) as much as we do . . . When it comes to the TRULY important things in life, we need to start valuing individuals – with all their assets and limitations – and stop placing labels on our children! It has to start somewhere if we want this world to be a better place for them.” The rest, as they say, is history. The rest is passion. The rest is fire. The rest is gospel.

In the biblical understanding, the saints are all the people of God. I am a saint and you are a saint because God’s Spirit dwells within us. But later Christian tradition narrowed the definition somewhat, defining saints as those whose unique holiness of life was worthy of emulation by others. I think it’s safe to say that Lori was a saint in both senses. Of course, she was not perfect. She had her faults and her foibles, just like the rest of us. But the path she cleared is well worth following. The road she paved is well worth traveling. The life she lived is well worth emulating. If Lori could speak to us today, I believe she would tell us to continue what she began. Stoke the flames, tend the fire, shine the light, keep up the fight. When you encounter someone who is differently abled, don’t pass by on the other side. Reach out to them, take hold of them, love them, and let them love you. See them for the gift that they are and receive the rich blessing that only they can give.

When I met with Lori’s family on Saturday, Adam, Emma, and I took a walk in the fairy garden, a whimsical retreat that Lori designed for the girls in a secluded corner of the backyard. Adam asked Emma what she would like for me to tell you all about her mommy. Her response was brief and pure: “Tell them I loved her.” As I look around this church today, I am overwhelmed by the outpouring of love for Lori. She was loved so well by so many because she loved so many so well. In the final analysis, that’s what Lori did best: she loved. And I can think of no better testament to a life well lived.

Lori’s favorite quote, her mission statement, if you will, was “the reason we’re here is to leave the world a better place than we found it.” By any measure, she succeeded in spades. This world is truly a better place because Lori Barta was in it – eyes were opened and lives were changed. We can only hope that someday the same might be said of us, that we might make such a difference.

I was going to conclude by saying “Rest well, good and faithful servant.” But I’m not sure that rest is in Lori’s vocabulary. I hope the angels have had their Wheaties, because they’ve sure got their hands full. I imagine that even now Lori is enlisting their help with some new celestial campaign. But before it begins, I can see her gathering the children in her arms and telling them how much they are valued, how much they are cherished, how much they are loved. And I can see God . . . smiling."

May Lori rest in peace but know that her family will be loved by countless people here to help them as they go through their difficult journey and that the rest of us will continue the work she started.

1 comment:

Anonymous said...

I feel privileged to have been at the funeral and hear this wonderful sermon in person. It is very uplifting to read it again.