My daughter, Courtney, gave the following talk at the Illinois Women in Leadership Conference. Courtney and her husband Evan have a daughter, Brenna, who was born in December 2011. Brenna has a very rare, very severe skin disorder, and her speech focuses on their journey and the lessons they have learned. -- Mike Klemm
[FIRST SLIDE - first photo of Roger Crawford]
Some of you may have heard of him before, but if you don't recognize him, this is Roger Crawford. Roger was born with only two fingers on one hand and a thumb on the other hand. One of his feet has three toes, and the other leg was so underdeveloped, it was amputated below his knee.
But instead of growing up "accepting" that his future would likely not include sports, he trained and pushed and challenged himself to pursue his dreams of playing tennis. He adapted to his limited hand capabilities by holding the racket in the middle opening instead of the handle, and he learned to move quickly on his feet with a prosthetic.
[NEW SLIDE - Roger playing tennis]
Roger went on to play tennis in college, becoming the first person with a physical challenge affecting two or more limbs to play NCAA division 1 athletics, and is now a highly acclaimed speaker and author.
I was in 5th grade when I got to meet Roger for the first time, at the very beginning of his speaking career. As a 10 year old, I was nervous about shaking his hand. What would it feel like? How would I accommodate his missing fingers? When it came time for the handshake, I barely noticed his fingers. Because his bright smile, warm eyes and spectacular personality completely erased what Roger lacked - fingers - and gave way to what he COULD do.
Meeting someone with a visual difference and physical handicaps who had overcome all of his physical challenges to achieve success that others only dream of was so cool to me, as a 5th grader. But it was not only his determination that left a lasting impact on me - it was his positive attitude as he met all of these challenges.
The reason I got to meet Roger was that my dad had just started up a new company - a speakers bureau, where he works with sports personalities and internationally known speakers to connect them with conferences, symposiums and other events that want a keynote speaker. I grew up with names like Zig Ziglar, Larry Winget, and Jack Canfield and Mark Victor Hansen, who co-authored the Chicken Soup for the Soul series.
And when my dad began to coach my basketball team around the same time that he started his company, I would come home from school to stacks of books about goal setting, empowerment, leadership and achieving success.
I would walk into the bathroom to see things like this taped to my bathroom mirror:
[NEW SLIDE - "GOOD BETTER BEST, Never let it rest, Until your good is better, and your better is best!"] (are you all as inspired as I was back then? )
However annoying it was at the time, I finally realized something in adulthood: when you hear it and read it and think it often enough, you believe it and you start living it.
I can say the same thing for the lessons my mother taught me, though her lessons were more by example.
My mom is a social worker, and you don't become a social worker without a huge amount of compassion in your heart. That compassion was passed on to me with every conversation -both short and long- about how much we have and how little some other people have. That compassion was passed on to me with every volunteer project our family took on, with every Thanksgiving basket we filled, with all of the Christmas presents we purchased for our "angels" on the Angel Tree at church.
My parents both grew up in very modest households, but they worked very hard and took calculated risks to be able to give my brother and me a life where we didn't have to think about money. However, they wanted to keep our eyes open to this fact. They instilled in us the value of hard work in life, and I will say that I didn't always have the same attitude of gratitude that I do now, but my dad especially really pushed us to excellence. Between my dad's lessons in overcoming obstacles in life and achieving my dreams, and my mom's lessons in compassion and kindness, I had a fantastic foundation for success as a child.
[NEW SLIDE - basketball pic]
Now as I mentioned earlier, I played basketball growing up - though I'm sure you could have all guessed that by my impressive height! It was through the game of basketball that reinforced some of the things I was learning about working hard and pushing myself...but much more importantly, it taught me early on about being part of a community and about forming lasting friendships.
I grew up with most of the same women I am still best friends with today. We have gone to the same schools, participated in the same activities and played on many of the same sports teams, including basketball all through high school. It was through this team that I really came to understand and value strong communication, encouraging others, and the support that comes with true friendship. Just as in real life, you can't win alone - you need a strong team who really cares to help you.
Now with all of these early lessons, these valuable friendships I had formed, the success I had achieved in the classroom as I graduated with a great degree from a leading university...I really felt like I was at the top. It seemed as close to perfect as you could get.
[NEW SLIDE - collage of friends and family]
During college I had met a guy who I knew I wanted to spend the rest of my life with. He had so many of the same ideals that I had regarding not only hard work, goal setting, and success, but also the same ideals about giving back to our community.
Evan and I got married when he was right out of college - I went for the younger man - and we were so excited to welcome a baby boy two years later.
[NEW SLIDE - photo of Connor]
We were crazy obsessed with our kid!
I had baby fever and I wanted a million of them. Evan, being the fiscally responsible banker that he is, was more reluctant to produce these money-sucking machines. But we knew at least one more was in the cards, and after a little time, we were living on cloud nine to find out we were pregnant with a baby girl.
[NEW SLIDE - family photo]
We envisioned what we then considered the perfect family: one boy, one girl---two little blond-headed kids running around, playing sports and exceling in the classroom. Evan was in a thriving banking career, and I was running a successful photography studio with big dreams of growth and expansion and soaring sales. We might as well have thrown a perfectly manicured lawn and white picket fence in there.
On the afternoon of December 19, 2011, our baby girl came into our lives...and completely destroyed our perfect picket fence.
[NEW SLIDE - photo of Brenna]
Brenna was rushed to the NICU at St. John's Hospital and was diagnosed with a very rare, very severe genetic skin condition called Harlequin Ichthyosis.
What this means is that there is a mutation in her gene that makes the top layer of skin. Her body recognizes this error and tries to make up for it by over-producing skin. She makes skin 10 times faster than we do, and she can't shed it quickly enough, so she has thick, dry, peeling skin and we coat her in Aquaphor lotion about 5 times a day just to keep her comfortable. And basically her top layer of skin doesn't work - it doesn't keep moisture in her body, it doesn't keep bacteria out - which means she can get skin infections really easily - and it doesn't regulate her body temperature. She isn't even able to sweat, so she overheats easily.
It took a couple of days for the severity of her condition to really sink in to me. Before this, I had NO idea how critical the skin is to our bodies. At first, I thought she would simply look different, and I began preparing myself to accept this.
[NEW SLIDE - Connor touching incubator]
But on day two, as we gathered at a meeting with at least half of the neonatology team, I fully realized how critical she was. She was kept in a tiny incubator so warm and humid that it was fogged up most of the time, and we weren't allowed to hold her. Her appearance was so shocking that we would break down into tears almost every time we would look at her. And she was kept on morphine to help with the pain she was in because of her raw and restrictive skin.
As our doctors discussed pain management instead of going home, I quickly realized that it was very likely Brenna would die.
[NEW SLIDE - Brenna held by Evan's glove]
And so, when she contracted an aggressive blood infection on Christmas Eve, I thought "this is it. My daughter is going to die on Christmas." We had her baptized at 1 a.m. on Christmas Day, and we were told that if her health deteriorated anymore, we could probably do nothing more than "make her comfortable." We sat, anguished, by her bedside all night wondering when we would have to say goodbye, wondering if we would even get a chance to hold her in our arms before she went to heaven.
But as many of you know, Brenna fought through that night. And she has fought for the last 21 months, as she has battled skin infections and surgeries and severe feeding issues. And because of her, I have pulled up every lesson I have ever learned about resiliency and hard work and positive attitude.
[NEW SLIDE - me holding Brenna]
We have never questioned why during this journey. We know exactly why Brenna was given to our family. To teach us about unconditional love, about the true meaning of beauty and to strengthen our relationships with each other and with God. And we also believe that God wants to use our family to teach others about these things, and about celebrating differences.
So although I've always known why, I have never considered HOW until I was asked to do this speech. How we have coped these past two years and how you not only survive but learn to thrive when faced with such a challenge.
[NEW SLIDE - me and Brenna b/w pic]
I think, as I said in the beginning, when you are constantly hearing it and reading it and thinking about it, you believe it and you start living it. While that applies to goal setting and pursuing your dreams and the power of positive attitude, the same is also true for happiness. This is definitely not what I had planned for my life - putting many of my dreams on hold to care for a child with very special needs. But rarely does life hand you exactly what you want or what you expect.
If you look at your life, I'm sure you can name dozens of negatives. The stress of your job, drama with coworkers, huge responsibility of raising children. It can wear on you. It can be so easy to get caught up in the negative. To ask "what if?" or " why me?" But that will only lead to a downward spiral of sadness, disappointment, anger and resentment that leaves you with nothing. No productivity, no hope, no fulfillment.
[NEW SLIDE - Opportunity for good]
Everyone has negative in their lives, everyone has challenges to overcome, trials and stress. Perfect does not exist. Normal does not exist. But good exists and is everywhere. There is always opportunity for joy and for good in every challenge we face. It's a constant decision we make to find those opportunities.
I was thinking the other day about happiness when it occurred to me that right smack in the middle of the word is the letter I. Four letters in front of it, four letters behind it, to make up the word happiness.
[NEW SLIDE - Happiness]
I realized how perfect this is, because at the very core of true happiness, the very center of contentment, is ourselves. My happiness starts in the middle with myself, I, and radiates outward to all of the different aspects of my life to make up my total happiness. I began a blog when Brenna was born called Blessed by Brenna to educate others about her condition. At first, I looked at it as a way to update our family and friends about her health status each day.
[NEW SLIDE - blog header]
As I continued to write week after week, I began to gain thousands of followers, and I realized I had found a unique platform to not only share our family's story, but to share the perspectives we had gained as parents to a child who was very visually different and to educate others about Brenna's skin condition and to encourage other parents in this difficult journey.
So I look for the positive as often as I can. Instead of focusing on the fact that we can't spend all afternoon at the pool on a hot day because Brenna can't be in the sun or heat, I savor the little moments with my kids and we have picnic lunches in the living room and watch movies on hot days.
Instead of being discouraged by how much our doctors and therapy appointments eat up our schedule, I have built a medical team that I enjoy and I trust, and it often makes doctors appointments like visiting with a friend.
And I have learned to hold back the tears when I notice the Aquaphor stains on my nice clothes (and it gets EVERYWHERE!), because that's just life. It's far from positive in our house every day - we still battle severe feeding issues along with the intense skin care that is never-ending. But I really try to focus on the positive.
On my blog, I write about the positive aspects of our lives as often as I can. I constantly evaluate what makes me happy with this life I'm living right now and focus on the best parts. I indulge in little treats when I need a pick-me-up. (It's amazing what a white chocolate mocha from Starbucks can do for your mental health!)
All of this effort does actually make me FEEL happy.
I've discovered in these last two years that there are three ways to respond to negative.
[NEW SLIDE - 3 ways to respond to negative]
- You can wallow. This should not be confused with true grief during a tragedy, because everyone must grieve and it's part of the healing process. I still grieve sometimes.
I would be lying if I didn't admit that I have had very very low times. Of crying and sadness and negative thoughts that I will never repeat. We have wondered and worried about what Brenna's life would be like, living with this condition, and about what our lives would be like, what we would have to give up.
But wallowing is not healing like grieving is. Wallowing is letting yourself be sucked into the negative, moping about the negative and feeding the negative mentally and emotionally. It is not productive and it only makes you feel worse about yourself.
The good news is that you can pick yourself up. You don't have to wallow...
- You can change what is making you unhappy. Take the time to figure out what would make you happier or more fulfilled, and then do it. It's always easier said than done. But if your job doesn't make you happy, find a job that does. If your junk-filled garage is bogging you down, get it organized. Put a lot of effort into a relationship with a friend or family members that needs work. If your social calendar is a point of complete stress, say no. (Saying no can be so freeing, can't it?!)
- However, you can't always change everything that is negative in your life. So you must change how you react to it. You must make it a positive through your own perspectives or response to it. This is the case where the I in the middle of happiness really stands out.
Evan and I try to find humor in so many situations that others might cry about, because if you can't laugh about things, you'll go crazy, or drink heavily, or both. (One afternoon I was at the grocery store, which was packed and my bright red, scaly baby tends to elicit a lot of stares in that sort of situation. We had finished our trip and were nearing the checkout when Brenna became especially feisty, squealing and giggling loudly as we shopped. We'd been stared at the whole time we were shopping, but I just laughed it off. I leaned over to her and exclaimed "Brenna, if you get any louder, everyone's going to start staring at you!")
[NEW SLIDE - Resiliency is a choice]
Resiliency and happiness go hand-in-hand. The ability to be optimistic and to find good in the face of the negative greatly impacts your happiness across every part of your life.
I think resiliency in the wake of setbacks is a choice. Not only a choice we make every day with our attitudes, but in who we choose to surround ourselves with, what we choose to read and watch and look at online, and what we choose to believe as part of our faith. Because all of this impacts how we are able to handle and respond to negative situations - from devastating illnesses to just the everyday stress of life. I have been so blessed to see many of these choices that I've made come full circle again. The incredible friends that I found when I was young rallied around our family during the lowest point in our lives. The community that I've been striving to give back to over the years came together to provide for our family. I held onto my faith in God during the dark days and I have a renewed strength in my relationship with God. And all of these have been resources to draw happiness and strength from when I need it most, in order to bounce back when life has pushed me down.
[NEW SLIDE - Brenna smiling]
Finding the good in a situation when your world has been turned upside is not easy. But it can start small. And I can tell you firsthand that it will build.
After months of clinging to the positive and writing about the positive on my blog, I began to realize that I was witnessing a ripple effect from my actions. The more that I strive to make the most of what I have been given in life, and the more that I write about how I am doing this, the ripples are spreading bigger and bigger.
People seem to be drawing inspiration from my positivity, and awareness of Brenna's condition is spreading. People are evaluating their own perspectives of interacting with those who have visual differences after reading our story. Groups and individuals are making donations to the Children's Hospital and to the Foundation for Ichthyosis so that other families like ours can be helped. And maybe what makes me the most excited is that parents are taking the time and effort to teach their children about kindness and acceptance.
[NEW SLIDE - Tinysuperheroes]
And a blog reader was even inspired to start a nonprofit called Tiny Superheroes after reading about Brenna. In Seattle, Robyn hand-makes superhero capes to gift to children fighting illnesses, and she has now empowered more than 1,700 children around the world...1,700 families who have been directly impacted by receiving a cape and thousands of other people who have been inspired to give and to learn about these children after seeing the TinySuperheroes' story on media like ABC World News with Diane Sawyer and People Magazine - all because of Brenna.
This continues to fuel my momentum and my happiness. What I first thought was the worst thing that could ever happen has turned into more good than I could have ever believed.
[NEW SLIDE - family pics]
Instead of thinking about what Brenna can't do because of her skin, I focus on all of the things she will get to do, and all of the things we will still get to do as a family. The possibilities really are endless. I can honestly say that I am so excited about the future. I'm continuing to see how much opportunity there is for good and for happiness even without the so-called perfect life that I originally envisioned for myself and my family.
[NEW SLIDE - Brenna in yellow]
After all, as Roger Crawford showed me at a very young age, it is up to only Brenna what she can't do. And as I strive to pass on the lessons of hard work, compassion and resiliency that were taught to me, I know that while her life will not be without challenges and will be far from perfect, she has the opportunity to impact the world and do so many great things with her life.