Finding courage

Omaha Beach, France

“Courage is not the absence of fear, but rather the judgement that something else is more important than fear.”

Ambrose Hollingworth Redmoon

I stood with my family above Omaha Beach this summer. From the safe distance of 75 years away, we learned about the 160,000 soldiers who landed on a 50-mile stretch of heavily guarded coast on June 6, 1944: the day often referred to as “the longest day,” one of the largest military actions in history.

Standing on the actual terrain in the wind and rain helped me take in just how little cover and safety there was on for these men. What made it possible for them to get through that day—to take a step off the landing craft, onto the beach, into the gunfire? Surely they were not fearless, but yet they did what they felt they needed to do in the face of great danger.

Since that trip I’ve been thinking about courage. Of being afraid but doing what needs to be done anyway.

The threats I face in my comfortable life are nothing compared to theirs of course. Yet I’m often afraid. As a parent of a child with multiple disabilities who needs lots of support, I can find so many things to be afraid of. (I wrote about this fear I called the Terror of Scarcity back in 2011.) In my work trying to help improve healthcare, I am often afraid to raise my hand or open my mouth. In my relationships, I’m afraid to say that I need help, that I’m sorry and even “I love you.”

It’s easy to feel ashamed of feeling afraid, and we rarely talk about it. But fear is like sneezing or the hiccups. It just arises naturally even if we don’t like to talk about it. (If you don’t believe me, a web search for fear quotes reveals that we’ve been trying to psych ourselves up as a species for a long time.)

But less natural and automatic is courage. Courage is sometimes used as a synonym for fearlessness, but for me, it means facing a challenge in spite of fear. The root of the word courage is cor, the Latin word for heart, and suggests that when we bring our heart into the situation, we find the power to act despite the fear. When I listen to my heart tell me what is more important to me than avoiding an immediate threat, the courage to act can suddenly appear.

Poet Mary Oliver captures this so well in The Journey: “One day you finally knew
/ what you had to do, and began, / though the voices around you / kept shouting
their bad advice—/ though the whole house/ began to tremble /
and you felt the old tug / at your ankles.”

Listening to our hearts isn’t always easy. Luckily there are many people and organizations who help people do just that. I’ve found guidance in several places:

The Center for Courage and Renewal helps leaders bring integrity and trust into their organizations and communities. From them, I learned that it’s easier for me to live wholeheartedly (i.e. with courage) when I’m in the company of others who are seeking to do the same. Through their programs and books I’ve found my way back to my voice and my sense of adventure.

RAIN is a mindfulness technique that helps me with any emotion as it arises. Its four steps are Recognize what’s going on, Allow the feeling to be there, Investigate the feeling with curiosity and Non-identification or not equating who you are with your thoughts or emotions. Tara Brach has written about it shares talks about it frequently on her website. She is a wonderful teacher.

Vulnerability researcher Brené Brown shares the link between vulnerability and courage in much of her work, including her now famous TED talk and her recent Netflix special called The Call to Courage. She’s shifted the way we talk about fear and courage.

As I write this, there’s part of me wondering if I’ll actually share it publicly. It’s scary to admit I’m scared. But something tells me that you feel fear, too. And that just like me, you have things that are more important than fear.

What scares you? And what’s bigger than your fear?

_____________________________

After spending years coordinating healthcare and other services for my son, I now lead and support initiatives in which patients and their families, clinicians and policy makers collaborate to create better health and care. I welcome you to join in an on-going conversation about healing health care by subscribing to this blog, in which I write regularly about the experience of living in a complex special needs family and working to create and support change, or by connecting on Twitter or LinkedIn.

In the soda aisle

In the grocery store yesterday I passed a dad holding his baby in the soda aisle, right between the ginger ale and the sparkling water. He stood there, babe in his arms, simply covering it with kisses. He wasn’t trying to cajole the baby or comfort it; instead it seemed as though his love was just so big, so overflowing that he couldn’t take another step without letting some of it spill out. It got me thinking about how there was a time when it probably wouldn’t have been OK for a father to feel that much delightful affection for their child, let alone show it in public. We often think about improving gender equality as something that will only benefit women, but clearly as the world has shifted to open up some public domains for women, it has also allowed men to shed private norms that have kept them separate from their whole selves. Emma Watson’s speech to the UN general assembly for her HeforShe campaign makes this argument movingly, but reminds us that we still have far to go.

There’s a parallel argument here which disability activists have been trying to make for years, but which I don’t think we’ve been able to make compellingly: increasing access and inclusion for people with disabilities isn’t simply good for people with disabilities, it’s good for people without them too. Opening up my world to a wider range of difference in others has meant that there’s more room for me to be me. It’s easier for me to accept and even love myself and all my differences when I get the chance to know and love others for theirs. When everyone belongs, I belong too.

The disability movement, with its push toward the concept of inclusion in schools, housing, the workplace and greater society, has made some inroads. As with the movement toward gender equality, we still have a long way to go. Until then, I’ll simply have to be grateful that I got to learn the lesson first hand long before it makes its way into the mainstream. Lucky me!

Leaving the safe harbor

“Twenty years from now you will be more disappointed by the things that you didn’t do than by the ones you did do. So throw off the bowlines. Sail away from the safe harbor. Catch the trade winds in your sails. Explore. Dream. Discover.” -Mark Twain

It’s time for an adventure. Maybe not an Everest climb or paddle down the Amazon, but for someone like me whose idea of a great Friday night is Indian takeout and a Midsomer Murder on the DVR, it’s kind of a big deal.

In a few weeks, my husband, the kids and I will be moving to Europe. Sweden to be precise. My husband was born and raised there. It’s where we met, a long, long time ago. It’s where we got married and started our life together. After 18 years of living in the US, we’ve decided it’s time for Sweden again.

I’ve made this trans-Atlantic move twice before. Before kids. Before a career. Before owning a home. Before turning 40. Before turning 30 even. It was an adventure those times, too. But this one seems so much more adventure-y, in that terrifying-and-ludicrous way adventures do.

There’s so much more to lose and miss. That’s a good sign; it means that I have much to be grateful for: a wide, rich network of extended family, a few deeply rooted friendships, a blessings of rewarding work and sheltering home, and schools in which my children grow and thrive.

“No, no! The adventures first, explanations take such a dreadful time.” -Lewis Carroll

It’s no surprise, given how much I am leaving behind, that people are curious about why we’re going. Frankly, I spent a lot of time being ambivalent about it myself, and that confusion likely telegraphs itself from my heart to the outside world.

I wasn’t even going to try to explain, assuming no one would understand since I didn’t. (And honestly, how do you tell your family that you’re moving to be closer to family? Try it.) But a family member encouraged me to make the effort. So here goes.

No single explanation will really suffice. Instead, there are many. We are leaving family and friends here, yes, to be close to family and friends who we have missed for a long time. There’s the opportunity for the kids to have a day-to-day life spent with cousins and aunts and uncles—and for me to see four of the world’s most perfect sisters- and brothers-in-law more than once a year. My heart smiles when I think of that.

Less certain but also appealing is the possibility that if we play our cards right, we have a chance for a somewhat less crazybusy life. Sweden’s work policies tend to be a bit more compatible with raising a family, and I do look forward to that. I say “less certain” because I’ve long suspected that crazybusy is my default setting. Here’s hoping for a re-boot!

The explanation I’m less comfortable giving to my friends who don’t have kids with special needs (but which my special needs friends seem to get before I get the whole sentence out of my mouth): I’m thinking about the future. It’s hard to explain. Whether it was a brilliant move or a foolish one…I’ll let you know in 20 or 30 years.

“A ship in harbor is safe, but that is not what ships are built for.” -John A. Shedd

A woman at a special needs conference two weeks ago overheard me telling a friend that we were moving to Europe. “OMG, you have a special needs kid and you’re moving to a different country?!?” The challenges of figuring out the ins-and-outs of new education, health care, and disability systems, finding new schools, new jobs, new doctors, new insurance, establishing all those new relationships with the school bus dispatcher and the pharmacy assistant, not to mention selling a home and packing—it’s exhausting and overwhelming to think about.

But I am grateful in knowing that I’m ready to try. Two years ago, it would have been out of the question. Today, I’m game for anything. I always dreamed I’d have adventures. Why shouldn’t we now? The wonderful thing about learning new skills like advocacy, collaboration and creative problem solving is that they are global. I’m bringing them with me. Thank you to all my wonderful teachers.

“Travel is not really about leaving our homes, but leaving our habits.” -Pico Iyer

We leave in one month. We’ve decided to take a boat. It’s the Queen Mary 2, and apparently you’re not allowed to call it a cruise, or some butler will come out and dump you in the ocean. It will be a wonderful chance to decompress between a busy period of leaving and a busy period of arriving. Or it will be a disaster, a family of four including one little boy who can’t sit still or drink tea without spilling among 1,700 very English English people. May God protect their shuffle board games. Either way, it’s a mode of transportation in keeping with our keen sense of adventure and desire for the romantic gesture.

In the mean time, there’s the leaving. The packing and the decluttering is so luscious that it deserves its own post. The tossing of the years of stuff. The unsubscribing from catalogs and email newsletters. The decluttering of the beliefs about who I am, what I am capable of, and what life will be life.

“Definition of ‘adventure’: extreme circumstances recalled in tranquility.” -Jules the Kiwi

More news to come on these extreme circumstances, or this adventure, for sure. Until then, it’s time to go pack a few more boxes.

Bushwacking: Four stages of becoming a family leader

Tomorrow morning I’m going to lead a round table discussion for special needs parents on using advocacy skills for systems change, also known as family leadership. If you’ve known me for a while, you realize how ironic this is. A handful of years ago, I was anything but a leader. I was so reluctant to take on the role of special needs mom that I wasn’t even a follower. But now here I am. How did this happen?

Blazing a new trail

The first few years of parenting my child with complex special needs was like stumbling along an unmarked trail in the woods. I went in circles, covered in scratches, stumbling into poison ivy.

Then after a while I crossed paths with some more experienced hikers and started figuring stuff out—which mushrooms are edible, how to navigate using moss growing on the north side of trees. I had to let others know these gems! And so I stopped, turned toward the direction I just came from, reach out a hand to help those behind me could catch up.

Until finally, I knew the woods well enough to see that the trail was never going to take my family where we wanted to go. Even if it was marked, even if it was cleared. So I started blazing a new one.

A path toward leadership

While most people think that leaders are born to lead, that’s not always true. More often, they’re grown. This growth pattern is an expansion: an addition of skills, experience and expertise that allows us to help ourselves and eventually help others. Fellow special needs parent Eileen Forlenza calls it a progression to leadership. I’m not so sure it always moves forward; a new situation arises—a new symptom, a transition—and we feel like beginners again. But even so, if we step back far enough and squint, this pattern of growth toward leadership can be discerned.

Stage 1: Becoming ready to advocate

In all of the stages of family leadership that I’ve read about I’ve never seen this one included, yet it’s the most important. For many people, including me, it can be difficult to get in the driver’s seat. It doesn’t mean that we are neglecting our children; when I was in this phase, I was probably at my busiest and most stressed. I just couldn’t allow myself to get immersed enough to get to the heart of what my child really needed. It took several years of learning stress management and coping skills to have the courage to move into advocacy meaningfully. (At the same time, I often find myself back here as if I’m learning this for the first time.) Some activities of this stage:

  • Becoming accustomed to unexpected demands
  • Letting go of our expectations
  • Working through issues that prevent acceptance
  • Some useful skills: self-care, stress management, self-reflection
  • Taking care of other acute situations, i.e. financial, legal, emotional

Stage 2: Advocating for your family

In this phase, we learn to advocate for our own families. Some things we focus on:

  • Understanding the diagnosis, the symptoms and the treatments
  • Knowing our rights
  • Learning about resources & info via listservs, magazines, e-newsletters, trainings
  • Navigating the system and coordinating all aspects of care
  • Some useful skills: research, listening, organize information, cooperation, understand medical, educational and legal concepts

Stage 3: Advocating for our community

At a certain point, we learn enough about how to get our own child’s needs met but become sad or angry thinking about how many other families are still struggling. In an effort to pay it forward, we often engage in activities that aim at making it easier for others to make progress. And so we spend time:

  • Giving feedback: participating in surveys, focus groups, advisory councils, calls and emails
  • Sharing resources & information with other families via listservs, magazines, e-newsletters, trainings
  • Helping others navigate the system
  • Some useful skills: writing and public speaking, telling your story, supporting and coaching others

Stage 4: Advocating for system change

With more knowledge and experience comes the realization that the existing medical, educational, legal and society systems are simply not adequate to meet the needs of all people (especially our special kids), and yet they should be. At this point, we want to not only help other families make progress, but change the nature of the system itself. We start focusing on:

  • Lobbying politicians and representatives for change
  • Participating in the design, implementation and evaluation of system change
  • Mentoring others for leadership: A great leader doesn’t create followers; they create other leaders
  • Making the system easier to navigate
  • Some useful skills: lobbying, understanding systems, developing programs, mentorship, collaboration

Becoming a leader can feel intimidating. It requires new skills and courage at every step. It can be helpful to notice that leaders aren’t “born with it,” but are called to it. We can learn these skills. If we’re lucky, we have support and friendships for companionship along the way.

Some parting questions: Where are you on your path toward leadership? Notice how you can be at many places at once. When do you feel most like a leader? What made you ready to advocate? Who are the mentors who encourage you to lead? What skills do you want to learn so that you can be more comfortable leading? How can we support each other?

Never doubt that a thoughtful, concerned group of citizens can change the world; indeed, it’s the only thing that ever has.
Margaret Mead

A gift from the messengers

Special needs fill nearly every thought and moment of my life lately. My mind has become a radio station that plays all advocacy with no commercial interruptions. Health care reform and medical home are in heavy rotation, along with the usual med refills and parent-teacher conference stuff. It’s not universally popular music like the Beatles; it’s complex, dissonant sound that requires effort and courage to listen to. Philip Glass, Rachmaninov and creepy crime drama soundscape rolled into one.

So when I found myself heading to Washington DC (yes, for a health care conference, PCORI), I decided to arrive a few hours early to unplug and reconnect with a passion from my life before special needs—art.

The visual arts have always played a sacred function in my life. Although I love words, I experience an entirely different connection with life when I react to image, line and color. Even when it’s challenging, it feels good.

It was a smart move. Strolling through the National Gallery of Art, I was transported through time and space. All thoughts of accountable care organizations and conference abstracts were arrested for a few moments. But the escape didn’t last long.

The museum’s collection includes a number of fantastic paintings depicting the Annunciation—the moment in the history of Christianity when a messenger angel arrives to tell Mary that she will give birth to Jesus. It’s such a pivotal, rich moment in Christian iconography that there are many versions of the scene in the Gallery’s collection.

The Annunciation is special to me, though not for reasons of conviction. I don’t have a particularly strong faith, more a comfort from stories told and retold throughout my childhood.

The reason the subject is special to me is because this angel, this messenger of peace, is named Gabriel. And so is my son, the one I write about in this blog.

Years ago, when I told my deeply religious aunt that we were going to call our son Gabriel, she replied matter-of-factly, “Gabriel. He will be your peace baby.” She was right. He is one of the most patient, loving, accepting, generous and forgiving people I have ever met.

National Gallery of Art, Washington DC

Even though Gabriel (the angel) is associated with peace, his arrival must have been quite terrifying. No one expects an angel to show up, do they? He’s got to calm people down so that they’ll listen to him. In most of the stories about him, the first words out of his mouth are

Do not be afraid.

So whenever I see any painting of the Annunciation, I first think about Gabriel (my son), his namesake. Then I think: Do not be afraid. And the juxtaposition of those two thoughts always stop me in my tracks.

Much of the emotion I have around parenting Gabriel is fear. Not all, but much. Fear of the future. Fear of not doing or being enough. Fear of doing it wrong. Fear of not feeling the right thing. Fear of being judged for all of it. Fear of never being able to work through the fear.

So there I am, on my little escapist jaunt, riveted by the image of this magnificent angel, appearing before a young woman going about her day. He extends to her a flower of purity, a lily, and reassures her: Do not be afraid.

Looking at one of the paintings, for one moment I am able get my arms around the fullness of my own parenting experience. The terror and the peace. The peace and the terror. It’s there, in oil on board, just right there in four square feet, inviting me to react, to feel it, to stay with it. So I do.

And then it’s gone. I move on, strolling once again. Through the Dutch masters, through the Impressionists, through the gift shop, back out on to the street, back to the conference, back to life. Both the escaping and the embracing of the fear have worked their magic, and even though the music of disability gets cranked back up again, this time it feels like it’s got a beat I might even be able to dance to. At least, I’m not afraid to try. Thank you Gabriel (both of you) for the message.

Transition baby steps that lead to major milestones: It starts with YOU!

Recently my colleagues at the Federation for Children with Special Needs have been talking about the importance of preparing kids for medical transition to adulthood—how parents and caregivers need to deliberately teach kids the skills and build the confidence they will need to be engaged in their own health care as adults.

When the topic came up at first, I was resistant. With so many other skills to teach and care elements to manage, the prospect of adding another task to my long to-do list was overwhelming.

Luckily, one colleague offered one simple suggestion that I felt willing to take on: at our next doctor’s appointment, I would give my kids their health insurance cards, let them walk up to the check-in counter and say that they were there for an appointment. I felt it was something that my nine-year-old son, who has complex medical and developmental needs, and my seven-year-old daughter could handle.

Since our doctor visits are fairly frequent, I was able to try it out soon. My son, who has been practicing social pragmatics like this at school, loved this real world experience. My daughter also easily did it. I was also surprised by an unintended consequence: not only did it teach my kids a new skill, it reminded the staff, my kids and me that my child is the patient.

OK, I thought. I get it. This doesn’t have to be a big deal. As with most things we want our kids to know, we need to give them lots and lots of tiny opportunities to practice, not one big lecture a couple of days before they reach adulthood. I realized I could do this.

A couple of weeks later, a patient satisfaction survey came addressed to my daughter. Rather than fill it out myself or toss it, I gave it to her. To my surprise she had a lot to say, both good and bad. “I love Lorraine*,” she wrote about the medical assistant. She wrote earnestly: “The waiting room is really boring.” I was taken aback by the strength of her experience and her ability to articulate it. I chuckled thinking about what the person opening the envelope would think when they read the results.

Last week, she had her eight-year well visit. With minimal effort, I handed her not only her insurance card but also the card I use to pay her co-pay. I told her that she’d be fine checking herself in. Rather than standing next to her, I sat down on a chair nearby.

She approached the desk with a little hesitation, but the receptionist took the cards and proceeded to get her set up. He started to direct his questions to confirm our address and phone number to me, but I looked to her and repeated them, showing them both that this was between the two of them. I took real effort on my part not to jump in and help, but I managed.

We all survived and even smiled. By the end of the check-in process, he handed her a clipboard with a behavioral health survey. She came to sit near me and announced that she was going to fill it out. Once again I was surprised and delighted about how much I learned from her answers—for the questions “My child seems more tired during the day,” and “S/he wants to be with me more than usual,” she circled the options for “often.” Interesting information and the beginnings of a couple of great conversations we had afterwards.

As we went through the process, a woman sitting nearby with four boys, all clearly older than my daughter, remarked at how independent she was. They had already checked in, but next time, she said, she’d get them to do it themselves.

Shortly afterward, a hurried mother and her teenage daughter arrived. The girl stood over to the side while the mother took charge checking her in, while I got to sit and luxuriously read a magazine. Knowing that this girl would be going into her doctor’s appointment without her mother, as is required by law, I wondered how comfortable she would be.

Unfortunately, there wasn’t any way to pass along the lesson I learned to her mom, but I can pay it forward to you. Preparing our kids to become adult patients doesn’t have to be complicated. Just start giving them lots of tiny chances to practice, and they’ll surprise you. Before you know it, adulthood will be here, and they’ll be ready. Even if we’re not!

*not her real name