No Barriers

I have not been a very faithful blogger. There are several reasons for that. A big one is a relatively new project that has taken quite a bit of my time.

Last November, I met for the first time with a small group of lovely people who comprise the new No Barriers special needs ministry team for the church we attend. It’s something that’s been percolating for a long time, at least since spring of 2016, when I attended a regional conference on inclusion in faith communities.

This is not new territory for me. My dad is blind as the result of a bicycle accident. My parents got involved in church disabilities ministry when I was still pretty young, and I spent a lot of time traveling with them as they conducted awareness and accessibility seminars at Seventh-day Adventist churches all over Florida and, eventually, all over the South. It wasn’t always the most thrilling way for a pre-teen and teenager to spend the weekend, and I’ll be honest: I didn’t envision myself taking on that mantel as an adult.

But, as so often happens, life took some turns, and here I am. I believe churches should be a place where people of all abilities find inclusion, belonging and purpose. I saw needs around me, and after I attended that conference last year, a fire was lit. After talking to our senior pastor, I appointed myself the special needs ministry coordinator for our church and set about recruiting some help. I found some fantastic resources, including the Joni and Friends ministry Irresistible Church.

Our No Barriers team spent some time in the beginning talking to members and families of members with special needs. How were we doing? What was working? What could we do better? We’ve made some small changes as a result, like creating a larger diaper change area for a family with an older child who wasn’t able to fit on the infant-sized changing table. We’ve been working on general accessibility by obtaining a stair lift (donated by a business that was installing an elevator to replace their lift), improving signage for accessibility features, adjusting the pressure required to open doors…

We’ve been at this now for seven months, and tomorrow is a big day for our baby ministry. (I should explain that we attend church on Saturdays, just in case you’re confused by the day.) It’s the first week for our buddy program for a lovely 13-year-old girl with Down syndrome. The program is pairing this young member of our church with two peer volunteers who have gone through some simple training. They will alternate weeks to provide one-to-one support, helping their friend to participate with her class, freeing her mom to attend an adult class, and bringing down some of the barriers that separated this family’s experience from that of other members.

I’ve spent a lot of time over the past few weeks and months on program policies, training materials, log sheets and information binders, but this week is happening because other members of our church – many of them members with no direct connection to special needs – have shown they care and are willing to step up. Church is not a place for perfect people. We’re all pretty screwed up and dealing with our own personal failings. But when church is working like it should, it’s a place where we come together and support each other as we try to know God better and let Him work in our lives. Church as it should be is a place where we allow our needs to be known and watch as God moves us to take care of each other. Church as it should be is a compelling place to serve and belong.

I don’t know exactly how tomorrow will go. We’re new at this, and I have a feeling there will be hiccups along the way. I honestly have no idea what I’m doing most of the time. I don’t know where all this is headed long-term. But I sense God at work, and I am so grateful that when I have presented the needs I see, people around me have responded with genuine enthusiasm and caring. It gives me hope in a world where too often, the name Christian is wielded as a weapon to bludgeon and divide.

 

Down syndrome’s biggest gift

It’s completely outrageous, but somehow, the school year is over. Today was Lina’s last day, and a half day tomorrow is Corin’s wrap-up. My oldest is only finishing first grade, and already I can tell you, every year seems to go faster than the one before. I am not prepared for what this means for the future.

As Lina’s end-of-year party wrapped up and we headed home, I found myself again reflecting on the remarkable people she has brought into our lives. I’d like you to meet a few of them.

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That’s Ms. Meri. This was Lina’s second year in her early childhood preschool class. Ms. Meri has a graduate degree in early childhood special education from Vanderbilt, and she is certified in behavioral analysis. I’m not sure I can really convey the remarkable work she does and the tremendous difference she has made for Lina and our family. Her blend of warmth and no-nonsense high expectations was exactly what Lina needed as she began her school experience. Ms. Meri’s professionalism and expertise have been clearly demonstrated at every turn over the past two years.

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That’s Ms. Courtney. She was Lina’s occupational therapist this year. As the year began, Lina was resistant to fine motor activities like cutting with scissors or working on pre-writing skills. This morning, Courtney told me that writing her name on the chalk board is now one of Lina’s most preferred activities. That is no accident. So much patience and persistence has gone into finding the right strategies to motivate our girl to practice the fine motor skills so essential to her future academic success. Ms. Courtney also happens to volunteer as a leader for the GiGi’s Playhouse EPIC program for young adults, so she is doing big things in our Down syndrome community.

I didn’t get pictures with several other key members of Lina’s educational team: Arianna and Elizabeth, the fantastic full-time aids who did so much of the work necessary for the kids to learn and navigate the school day; Jodie, Lina’s beloved speech therapist, who often got a full-body, wrap-around legs hug at drop-off in the mornings; and Amy, the lovely and patient physical therapist, who made sure the physical environment in the classroom was suited to Lina’s needs and worked with her on the gross motor skills needed to safely navigate the school environment.

No one could have prepared me for how important these people have been to us. They work together as a team, helping to lay the foundation for Lina’s future success and thereby lifting so much of the weight that settled on my shoulders with her diagnosis. But beyond what they do for Lina, they are beautiful people, and my life is richer for knowing them.

What I am really trying to say is that besides the blessings of her individual presence in our family, Lina has brought us the gift of a network of truly remarkable people. In fact, that network extends well beyond her school. The early intervention therapists and staff who were our introduction to special education in Lina’s infant years, GiGi’s Playhouse volunteers and families, the lovely people we’ve met through the Down Syndrome Association of Middle Tennessee, random strangers who have shared their personal connections to Down syndrome… I regularly find myself counting as blessings people I have met in our foray along this unexpected path.

There are also good-byes that come with the package. Next year is Lina’s last in preschool, and it will bring changes. She will switch to the afternoon schedule, and after two years in Ms. Meri’s classroom, she will be required to change teachers. It’s always a little sad for a kid to say good-bye to a beloved teacher, but it’s especially poignant after two years of working with Ms. Meri and developing a solid trust in her ability to provide exactly what Lina needs in the classroom. We will miss her greatly.

There have been good-byes before, including to Lina’s entire team of therapists when early intervention ended at age three. Because these relationships are by nature more involved than in the average educational setting, the good-byes are hard. That will undoubtedly continue to be true. But it will also continue to be true that our lives are so much better for the role these remarkable people have played in Lina’s life.

It turns out, the biggest gift of Down syndrome is something we all hope for: meaningful connections with the very best kind of people.

I don’t want to let this post go without noting that our educational experience is unfortunately not the norm. We’re still early in our experience, and I am sure we will face challenges in the future. But in many school systems across the nation, families struggle to get even the most basic educational and support services for their children with special needs. Under funded and under resourced schools often see those needs as a burden and try to get away with as little as possible, requiring parents to gird themselves for constant battle and strain family budgets and schedules to fill the gaps with outside resources. Even school systems with good intentions often fall short due to a severe lack of resources and training and the push and pull of constantly changing regulations and competing priorities. I am incredibly grateful that our experience thus far has been exceptional, but I also hurt for families whose educational experience has added to rather than subtracted from their burden. Better is clearly possible, and it shouldn’t take a wealthy county to make that happen. We must do right by our public schools, where most children with special needs have to receive their education and therapy services. 

Through the wardrobe

Corin turned seven on Saturday. I wrote my mushy post on Facebook, so I’ll skip the sentiment and get right to the good stuff: his Narnia party. We’d been reading Prince Caspian when he chose the theme, so he requested a Caspian costume that also worked for “favorite book character day” at school and will likely make a reappearance at Halloween. He put it on as soon as party day arrived and didn’t take it off until bedtime.

You may remember that Corin’s room is Narnia themed, so we were able to repurpose plenty, and some of the party decorations will live on upstairs. Inexplicably, I wasn’t all that on it with photos this year, so I missed documenting some things, including the little snow covered trees inside our wardrobe entrance, transported all the way from Georgia by my long suffering in-laws. But, here’s the best glimpse I have of our Narnia adventure.

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Corin’s favorite feature (that’s him lying on the pillow)  – the tent, a.k.a. the pavilion at Aslan’s How

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We tried story time in the tent, but a few paragraphs of A Horse and His Boy was all we could manage before attention waned. Let’s face it, everyone just wanted to get to the gifts.

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As Narnian a menu as I could conjure: cheese platter (clockwise from left: blueberry stilton, dill havarti, brie, English aged cheddar, mild goat), “venison” (rolled veggie turkey slices for our mostly vegetarian crowd), apples, berries, nuts, dried figs, raw veggies, lots of bread, butter and jam, and, under the dome, my first stab at Turkish delight.

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Corin was pretty stoked about the “royal cups.” It was high times drinking from stemware, even the kind that has to be assembled.

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Brownies and mint chocolate chip ice cream, as requested

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What’s in a word?

March is a big month in the Down syndrome community. March 21 – 3.21, for three copies of the 21st chromosome – is World Down Syndrome Awareness Day, and there are usually several events leading up to that day. Today, for example, is dedicated to Spread the Word to End the Word, a campaign focused on helping people eliminate the word “retarded” from their vocabularies.

I haven’t posted a lot about this particular issue, because my feelings on this are a little complicated. Don’t get me wrong, it’s jarring when I hear people use the word “retarded” as a pejorative. I know the imagery it evokes, and it’s not flattering to people like Lina, who until pretty recently bore the term as a medical label. (It wasn’t until Obama signed Rosa’s Law in 2010 that “mental retardation” and “mentally retarded” were removed from government policy language.) The r-word as an insult draws a parallel between a type of person and something stupid and contemptible.  The words we use do affect how we think about and treat others. I don’t buy the idea that considering the feelings of others is too much of a “political correctness” burden to bear.

On the other hand, I get it. We are dealing here with language creep. There is a long history of words that refer to people with disabilities becoming general insults. We don’t kick up the same kind of fuss today about the words “idiot” or “moron” (though I would certainly discourage my kids from using them out of general kindness). At its most literal, “retarded” means “slowed down.” In that sense, it is an apt explanation of what happens for people with an intellectual disability, who generally take a little extra time to learn and process.

lina-eyesI have found it very helpful to operate based on people’s best intentions. I get that when it comes to any sensitive issue, many of us – myself included  – don’t always know what to say. The last thing I want is to make people so fearful of saying the wrong thing that they are unwilling to engage at all. Open dialogue is the only way to address the bigger issues at stake. I want friends and acquaintances – or strangers in the grocery store, for that matter – to feel free to ask questions in good faith. I want you, dear reader, to know that it’s okay not to know. The only real crime here is being unwilling to learn.

Which, I suppose, brings us full circle. While I understand that many, many people use the r-word without meaning any offense, its connotation can be very hurtful to a lot of people. So here’s the deal: I promise not to crucify you for unintentional offenses. I get that there are things you don’t know about people with Down syndrome. It’s okay. But I will urge you to learn. Be willing to ask questions, to get to really know people with disabilities, or, if that’s more than you can do, to at least read up.

Words matter because they refer to deeper things: to how we as a society view and categorize people. What are our deep-seated assumptions about a person with an intellectual disability, the ones we would never say out loud and may not even realize we hold? Do you really understand that every person with a disability is a unique individual who is loved and valued as a family member, school mate, coworker, friend and neighbor? Or are you unintentionally reducing people with intellectual disabilities to a caricature that makes them “other” and minimizes their humanity and value? Once we all have a handle on those issues, I have a feeling the words we use will naturally change to reflect our respect and understanding.

A ball for believers

If you follow my social media feeds, you’re probably already sick of seeing my pictures from last night’s GiGi’s Playhouse Believer’s Ball. I apologize if I seem overly exuberant. It’s been a long while since Jon and I have gotten really dressed up to go anywhere, and this was for a cause very near our hearts.

img_0442I’ve had a nasty sinus infection for more than a week, but I finally got antibiotics on Friday
and rested up as much as I could yesterday. I was determined to make this event.

If you’re not familiar with GiGi’s Playhouse, let me introduce you. GiGi’s is a network of
Down syndrome achievement centers. (I think the current count is around 30, including one in Mexico, with more opening all the time.) These are physical locations where people of all ages with Down syndrome and their families can gather for free therapeutic and skills training programs, socialization, one-on-one reading, math and handwriting tutoring and play in a fun and welcoming environment. Our Nashville GiGi’s is located in Brentwood, south of the city. As I’ve mentioned on this blog, I lead the Busy Bodies (previously 2 & Under) group for the littlest ones and their families. Lina has at different points participated in that group and a music and language img_0446class, and she and Corin now go every week to a Special Olympics Young Athletes event that focuses on beginning athletic skills. They LOVE that class. Most GiGi’s programs are led by therapists and experts in the areas they teach. Ninety-some percent of the people who work at our Nashville GiGi’s are unpaid volunteers.

When I talk to people about why GiGi’s is important to us, I go back to when Lina was a newborn and we were first trying to get our bearings. We had been introduced to the Down Syndrome Association, which offers fantastic resources for families. I was a little lost, though, on where to go to meet other families like ours. I wanted to connect in person with parents who had been where we were, but a support group felt too intense. Then I learned about a new place called GiGi’s Playhouse. At the time, we lived too far away to access GiGi’s as often as I wanted, but once we moved closer, it became a staple of our family’s social support system. As I’ve become involved as a volunteer, I have seen other families find in GiGi’s exactly what I was needing so badly when Lina was born: a place to connect, ask questions and find encouragement and support from people who just get it.

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Our girl on a centerpiece vase

In addition, GiGi’s is a big piece of Mission: Lina’s Future. It’s the answer to questions like, “What do we do to support Lina’s progress over the summer, when she’s not in school?” The answer: Sign her up for one-on-one tutoring and therapeutic programs at GiGi’s. “How do we make sure she and Corin have social support from people who understand their specific experiences?” The answer: Build a network of GiGi’s friends. “How do we support Lina’s independence as she grows?” The answer (or one piece of it – obviously this is part of a much broader plan): Get her involved in job training and social and therapeutic programs for older kids and young adults at GiGi’s.

img_0455GiGi’s works hard to build business and personal relationships in the community to educate and open doors for people with Down syndrome. These partnerships have allowed young adults with Down syndrome to learn floral arranging, become active members of a local CrossFit gym and find jobs at restaurants, businesses and even the Tennessee Titans. There is so much more I could tell you, but I think you get the picture: GiGi’s Playhouse is awesome.

The Believer’s Ball was a fun night out for a couple of parents who needed it. But it was also the biggest source of funding for the year for a place that makes life tangibly better for Lina and our family. So thank you to the many people who worked incredibly hard to organize the gala, to the many businesses and individuals who sponsored the gala and donated auction items, and to everyone who came out, bid in the auction and made generous donations. I hope you know how much it matters to a lot of families like ours.

It’s springing?!

I double-checked my calendar today, just to be sure. Yep, it’s still February. But today was 79 degrees and sunny, and all over town, flowers are bursting into full bloom. Lina desperately wanted to play outside, and I was happy to oblige. Temperatures are supposed to drop more than 30 degrees by tomorrow, so I figured we’d better soak it in while it lasted.

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“Catch!”

A conversation with my conservative friends

It’s been a while since I posted here. I, like many of you, have been distracted with events swirling around us. The noise has reached deafening levels, and as a result, I am doing some unplugging. But I also have some things I need to say. I’ve decided to say them here, where you can choose to read them or not and choose to comment or not. (While I am trying to unplug, I am always open to respectful conversation. I check email regularly and will be happy to talk to you about this or whatever else is on your mind.) Maybe this post will be helpful, or maybe it will just add to the noise. If it’s the latter, I sincerely apologize. I know you’re already bombarded from all sides. This is a long one, so hang in here with me.

If your social media feed is anything like mine, it’s recently been full of two broad groups of people utterly failing to understand one another. I’ve probably contributed to some of that myself, because I haven’t understood. I’ve spent a lot of time looking at events and wondering how things could possibly be happening the way they were. How could anyone think this way? How could anyone dream of voting for that man? 

But the unfolding of those events has shown me I’m clearly missing something big. The hand painted, billboard-sized, floodlit Trump sign a few doors down has shouted that I’m missing something. The views of members of my own family, people I love dearly, have shown me I’m missing something. So, I’ve been trying really hard to listen.  It’s not easy. I have very strong views of my own. Discussions can get tense. I get emotional. I don’t always hear what people are trying to say. I talk (or more often, write) too much.

Despite all of that, I think I’ve learned a few things. Trump supporters, I’d like to talk to you for a little while. Let me tell you first what I’ve been hearing from you; I’m sure you’ll tell me if I’m not in the ballpark.

You’ve felt for a long time that people in government – in Washington, maybe even in your own state capital – are worlds removed from you. The policies they debate and the laws they pass intrude but have little chance of making your daily life any easier. Maybe you’ve personally faced some hard times, and you’ve felt like Washington has made it worse.  You’ve seen opportunities you expected for yourself and your family disappear, and maybe it seems the government is taking them from you and handing them to someone else according to some twisted idea of fairness. But it’s no real surprise. These politicians don’t sound like you, they don’t come from backgrounds like yours, they don’t share your values, they’ve probably never held a job like yours. They’ve become a class unto themselves, existing to scratch each other’s backs, cater to wealthy special interests and big donors and perpetuate a godless system that places an increasing burden – of taxes, rules and limits – on the backs of citizens like you.  Everything you hear from Washington and from liberals says that you should be someone other than who you are, that you should believe differently than you do and that your way of life and values aren’t respected. 

Then, a candidate came along who sounded a lot more like the people you talk to day-to-day. He didn’t speak like every word was vetted by committee for its political impact. He made you feel like you could be proud again in who you are. He made you feel your grievances were real and justified, and he gave you hope that maybe your voice was being heard. He told you he was going to give back the opportunities that had been taken from you. He explained the world’s problems in terms that made sense to you and talked about solutions that sounded simple and straightforward. He seemed like the kind of guy who wasn’t beholden to anyone and did what he wanted, without the endless calculations of the politicians you’re used to seeing.

And yes, I know many of you voted for Donald Trump reluctantly, feeling stuck between two bad options. You chose to optimistically hope he would settle into the role, and that perhaps his outsider status really would be good for our entrenched system. 

Am I in the ballpark?

 I actually identify with some of that. I, too, feel that Washington is too insular, too far removed from the daily lives of “we the people.” I agree that donations for access and favor trading have become the status quo, leaving too little room for the voices of the people to drive agendas and shape policy. I think the executive branch of government has become too powerful and Congress ridiculously inept. I know our laws and regulations have become overwhelmingly complicated, and I know that many liberal voices in America have become increasingly removed from or even hostile to traditional Christian beliefs and values. I hear the condescension; maybe I’ve even sometimes been guilty of it.

But now I’m going to ask you to stay with me as I try to answer the question I have been hearing in various forms from so many conservative friends and family members: “Why are liberals so upset? Why the need for massive demonstrations? This is how it works. Your side doesn’t always win. I don’t remember this happening when Obama won. What’s with the whining/hysteria?”

 I’m not going to talk about what happened after Obama’s election. I’m not going to try to convince you that Trump is awful and you never should have voted for him. I’m not going to accuse you of being a racist. I’m not even going to rehash all the things he’s said, because most of you admit you don’t always love his big mouth/Twitter account. This is a conversation about understanding each other’s viewpoints. There will be no sarcasm here. I’m asking you to lower your defenses and step into shoes that may pinch a little.

I’ll start with the Trump campaign slogan, which has now become the mission statement for his administration: “Make America Great Again.” We’ve seen it everywhere for many months now. My friends who support Trump hear it as a rallying cry they can get behind after years of disillusionment.

Let’s break that message down. “Make America great again” contains at its core the idea that America was at some point in its past greater than it is now. In fact, it directly states that America is no longer great. Clearly, this resonates with many voters. But let me ask you a question: If America is not great now, when was it great?

I’ve heard man-on-the-street interviews on this question, and the responses vary. Some point to the Reagan years, some go farther back. I read an interview today with someone at the inauguration who pointed to the 60s as our golden era.

Again, I get it. You are likely thinking of more stable jobs, simpler family and social structures, foreign conflicts that had clearer moral grounds, fewer government regulations, a time when traditional Christian values bound us together.  We could argue about the accuracy of those associations, but I understand where you’re coming from.

But imagine now that you are a person of color in the south in the 1960s. What is life like for you? You are not able to eat at the same lunch counter, drink from the same water fountains, use the same restrooms or travel in the same rail cars as white citizens. You ride at the back of the bus, where the exhaust and heat are most oppressive. Your children’s “colored” schools receive a fraction of the funding of white schools. You will not be admitted to most colleges or universities. You live with the constant fear that you (or your husband or daddy) could be beaten or hanged from a tree because someone thought you looked too long at a white woman. You are expected to show complete deference to every white person you meet, no matter how you are treated. You face limited job and economic prospects. (And let’s not kid ourselves that it was much better outside the south.)

 Now imagine you are a woman in the 1960s. Many of your friends marry young and begin having children right away. Maybe you choose to go to college, where career options center on secretarial, nursing or similar occupations. If you choose a typically male area of study, you know to expect constant harassment from fellow students and an all-male teaching staff. You are barred from attending most Ivy League institutions. Once you are in the workplace, you face persistent sexual advances from male colleagues and may be limited in your ability to progress if you reject them. Once you marry, you are expected to quit your job to care for your home and husband. Birth control pills are still illegal in many states. If you are able to keep working after marriage, you may be fired as soon as you are visibly pregnant. You are not able to open a bank account in your name, and in many states, you are not able to serve on a jury.

What if you are a person with an intellectual disability? You are almost certainly hidden away in an institution to face torture and abuse, never to be seen or heard from in civilized society again. If you are lucky enough to have family who defies doctors to keep you at home, you have no access to education and certainly no hope of employment. It is assumed that you are incapable of even the most basic learning or independence. Predictably, your life expectancy is around 18.

If you are gay, you will likely never be able to publicly admit that identity, living in fear of being ostracized, beaten or killed. Any relationship must be conducted in absolute secrecy. You spend enormous amounts of energy keeping up pretense, feeling deep inside that something must be horribly, irreparably wrong with you.

I could keep going for pages; I’ve left out many, many groups. The point, my friends, is that the times you look back on as examples of American greatness were times of severe oppression and marginalization for many, many people. It is no coincidence that these times are long enough ago to have been softened by the haziness of memory, the sharp edges worn dull and the complexities simplified by forgetfulness. But for many people, those sharp edges and complexities were daily life. Can you understand why many of your fellow citizens quell at the idea of recapturing those days? Do you understand why the “make America great again” message, reinforced by divisive rhetoric and a reenergization of hate groups, feels to many like a rescinding of their rightful place in America? 

I know many of you feel the pendulum has swung too far; that deference is now given to minority groups out of fear of offending. You believe we have more than addressed historic inequities and members of minority groups are overly sensitive. But my friends, that view lacks the perspective that comes from experiencing that the lives of people like you always have been valued less than other lives. We do not live in isolation from our past. Our society was built on the authority of white, straight men over all other groups. When you complain about black pride because white pride is racist, you deny the entire historical context in which we live. When you talk of despising political correctness, we hear you saying you don’t want to have to consider the feelings of people who aren’t like you. You and I are not responsible for the inequities of the past, but we must live in a world shaped by them.

I know your climb has not been so easy. You hear the term “privilege” and feel angry, because you know how hard you’ve worked and how many challenges you’ve overcome. I’m not here to take that away from you. But please, try to understand: so many groups of people still face incredible hurdles just to reach the place where you started your climb. The progress our country has haltingly achieved toward rights for the marginalized is not guaranteed to remain or continue. Progress toward equality requires deliberate understanding and exhausting work to sustain. Maybe you feel the concerns and efforts around you are misguided. That is certainly your right, but please try to at least understand their origin.

On my news feed and in my daily life, I hear the voices of people from all walks of life, all races and all political persuasions who feel ignored and unheard. My friends, we must find ways to listen to each other and find common ground to make our government more responsive, more connected to the lives of its citizens. Gains for one group need not come at the expense of others, but that will be the result if we continue to operate from a place of fear and anger.

We live in a very complicated world and in very complicated times. We have no hope of facing the challenges ahead unless we begin from a place of kindness, listening to understand, giving each other the benefit of the doubt and valuing people more than ideas or identities. This is my prayer for myself, for you and for my country.