We Need to Say Goodbye to Cancer, Instead of Our Children

 

Childhood Cancer Awareness Month is a time when we strive to heighten awareness, but I’d like to share with you why it is so very important. This September brought much sadness to our team at Nebraska Medicine, as we said goodbye to three kids who lost their battles in the first week of Childhood Cancer Awareness Month. These three all fought valiantly and without complaint – for years. Their families talked about how they never asked, “why me”… they only continued to fight and live their lives with cancer. Each of these kids shows us why research dollars are so important.

Our first warrior was 24-years-old. Why was he a pediatric patient? Because his journey began 13 years earlier and he had “a cancer that just wouldn’t go away.” He died three days after his 24th birthday. He made the choice, at the age of 24, to take control and not seek any more treatment, as it would have not been curative. He had done surgeries, chemo, radiation, radiation, and then some more radiation throughout his battle. He decided that he wanted to control how he left this earth… spending his last days with friends and family, laughing and loving. This is exactly how he died – the same way he had lived – laughing and loving. I had originally met him at Camp CoHoLo (local camp for kids with cancer and blood disorders). I knew him as an amazing young man with the gentlest heart who treated everyone with compassion and loved to make people laugh. I watched as his brain tumor changed his physical appearance and altered some of his mental abilities, but what did not change was his sense of humor, his love of and compassion for people, and his amazing spirit. He donated his brain to be studied, “so that no one else will have to go through what I went through.”

Our second warrior was 13 and she died a few days before her 14th birthday. Her battle began in the second grade. Her treatment included chemo, radiation and a bone marrow transplant, which was successful at curing her initial cancer. Unfortunately, sometimes the treatment that is used to cure cancer can sometimes cause a different cancer and this is what happened to her. She developed a totally DIFFERENT cancer that was actually caused by the very treatment she received to cure her initial cancer. Her most recent battle lasted more than a year. If you don’t know anything about bone cancer, it causes excruciating pain and can be extremely difficult to manage with medication. Through it all, she filled her life doing as many of the normal teenage things as she could and inspired everyone around her.

Our third warrior was 17-years-old. He was first diagnosed at the age of eight. He relapsed at the age of 11 and received a bone marrow transplant. Although his cancer was eventually “cured,” he suffered from devastating side effects from his treatment. You see, he did not die from cancer, he died from those devastating side effects that destroyed his body until it could no longer sustain. If you ever had the pleasure of meeting him, you’d have thought he was perhaps eight or nine years old, because his growth had been stunted due to the drugs that killed the cancer cells. Much of the time, you’d have also thought he had some strange skin disease and perhaps would have feared that he was contagious. However, had you had the opportunity to talk with him, you’d have seen that he was a young man wise WELL beyond his years. He had this delightful sense of humor, a gentle soul and was always thinking of others. He was a man who accepted whatever God had given him and was grateful. He never complained about his life or his disease or about how all he really wanted to do was to just be like everyone else. He was never angry when his mom had to lift him out of bed into his wheelchair, or rub his legs when he had horrible leg cramps, or when he had to be pushed in his wheelchair by family or friends. He accepted his life and was grateful. He had the opportunity to attend World Youth Day in Poland this July and was able to make eye contact and exchange smiles with Pope Francis.

Only 4% of U.S. federal cancer research funding is dedicated solely to childhood cancer research. Then again, pediatric cancers make up less than 1% of all cancer diagnoses, so that’s fair, right? Think again. Let’s look at it from a different perspective; let’s look at it in terms of the number of years of life lost. The average age of an adult diagnosed with cancer is 66 and because the average life expectancy is 77, the number of years of life lost for an adult is 11. Meaning, on average, if they lose their battle right away, they would lose 11 years of their life. The average of a child diagnosed with cancer is 6-years-old. If we apply that same principle with the average life expectancy of 77, the number of years of life lost for a child, is 71 years. Meaning, on average, if a child loses that battle right away, they would lose 71 years of their life.

Every September, I fill my Facebook posts with statistics to educate and infuriate my friends. Why would anyone choose to infuriate their friends? Because in order for change to happen, there needs to be awareness. Awareness of the lack of funding. Understanding that what we’re doing is not enough. Posts have included such things as:

• 43 children are diagnosed with cancer every day in the U.S.
• Worldwide, a child is diagnosed with cancer every three seconds
• In the past 25 years, only TWO drugs have been developed specifically for children
• Most cancer drugs were developed for adults and are just given to children in smaller doses
• More than 95% of childhood cancer survivors will have a chronic health problem as result of their treatment and 80% will have severe or life-threatening conditions
• About 60% of all funding for drug development in adult cancers comes from pharmaceutical companies. For children – almost none. There isn’t enough PROFIT to be made because pediatric cancers make up less than 1% of all cancer diagnoses.
• Nearly 2,000 children die of cancer every year in the U.S.

Working in pediatric oncology has its ups and downs. Thankfully we have way more ups. People ask how we can do it. We reply, “How can we not?” Do deaths ever get any easier? Absolutely not.Do we ever know the right words to say? How can we? Are there ever any words that can take away the haunting emptiness that comes from losing a child? I don’t think so. We can only be there for the families, sharing in the laughter as we remember those stories that make us laugh, but eventually always lead us back to tears. We can share in those tears. We can help them know that they did EVERYTHING they possibly could and that we are always here if they need to reach out. We can pray for them as they muddle through the days, weeks, months and years trying to understand who they are when their lives are no longer consumed by cancer and its treatment.

Unless you have lived it, no one can know what it’s like to live daily with the worry of white counts and platelet counts, germs, infections, fevers, fear of relapse, repeat scans, lab draws, and doctor’s appointments. No one can understand how much cancer affects the entire family; the brothers and sisters who can sometimes feel “left behind,” the unexpected financial stress that comes with treatment (gas expenses of traveling to and from, hotel and food expenses, additional daycare fees for other kids, co-pays and more), having to quit a job or cut back to part-time because of the incredible amount of time needed to care for your child, the financial burden that results in having to suddenly have a reduced income, the strain that a cancer diagnosis can put on even the most solid of marriages/relationships, the unexpected hospital admissions, the family plans that often have to be canceled weeks in advance or even minutes before, the “I love yous” that have to come through the phone instead of in person, because you’re at the hospital instead of at home… the guilt that can accompany that as well.

We dream of a day when cancer no longer exists and pray that it comes sooner rather than later. We long for the days when no parent will ever have to hear the words, “I’m sorry, but your child has cancer.”

The Rewards are in the Relationships

      I received an invitation to a high school graduation for one of my patients who recently completed 2 ½ years of treatment for lymphoma. The invitation was address to, “Little Debbie Sunshine Wagers,” which made me smile and also brought tears to my eyes. Not tears of sadness, but tears brought about by blessings.  I started to think about the relationship that I’d built with this patient and his family over the past three years and what a blessing it has been and what a blessing my career has been in my life. What is it that I do, am I a nurse? No, I work in the cancer center as a child life specialist. For anyone that doesn’t know what that is, I’ll take a moment to explain. Child life specialists are the part of the healthcare team whose job is to take care of the “emotional part” of the healthcare experience. We help children to understand their diagnosis, prepare them on their developmental level for what will be happening, and help them develop ways to cope with what can sometimes be scary, painful or unpleasant experiences. We also help them remember that no matter what else is going on with their bodies and in the world around them, at the heart of it all, they are still kids and teenagers. We do our best to help them move forward and help their families bring as much normalcy back into their world as is possible. You may have heard it said that play is a child’s work and that couldn’t be more true. Play is a universal language and it’s spoken by everyone in the world, and likely even beyond.

     I’ve been practicing in child life for over 25 years and it’s hard to put into words what is so amazing about my job, but I’ll try. When anyone is diagnosed with cancer, it’s beyond devastating, even if there is a good prognosis attached to it. But, when it’s a child, it goes into a different category. How can that truly be fair? I am always touched by how our adult cancer patients talk about how unfair it is that children get cancer and have to go through this horrific treatment, and this is while their very own bodies are being riddled with chemotherapy. How really is any of this fair? When people ask what I do for a living and I explain my role, inevitably they say, “Oh my, it takes a special person to do what you do.” I’d like to explain why I think that I am the one who is blessed. 

     I can’t imagine anything more devastating than receiving the diagnosis of cancer, or worse yet, that your child has cancer. If you’re a young child, you don’t even know what cancer is, you just know it’s bad because it makes everyone cry. And if you’re a child who is at the age of magical thinking, you probably think that somehow you caused it. Our job is to help that child understand that it’s not their fault and teach them what the medical staff is going to do about it. I use dolls, pictures and real medical equipment to teach children about what is happening and try to take away some of that “fear of the unknown.” Using real medical equipment helps kids have the opportunity to see and use those items in a non-threatening way and allows them to play through what has or will happen. Looking into the face of a child or a teenager and empowering them to understand what is happening is an amazing feeling. While there is still fear, I believe that knowledge is power. Giving children the power to understand the best they can, what their role will be in battling this disease, and how we’re all going to work together as a team, is essential. Empowering the families to understand is also very powerful and watching them step forward with amazing inner strength that they never knew they had is, for lack of a better word, inspirational. 

     Teenagers probably have an even more difficult task ahead of them because developmentally they’re better able to understand exactly how big their challenge is and how long their journey can be. It’s hard enough to be a teenager today and now we’ve just added “losing your hair, feeling crappy, missing school and activities, not being able to participate in sports and other extra-curricular activities, and not being able to be a teenager and hanging out with your friends when you want to. We just made you different when all they really want is to fit in. Wow. Who dealt that hand, right? However, I will tell you that it is extremely powerful watching a 16-year old girl go from crying when she’s devastated to learn that her hair will fall out, to seeing her three months later, “rockin’ that bald head” because she knows that it doesn’t define who she is. Once again, truly inspirational.

     So here is the blessing; from the very beginning of their diagnosis, on what is probably their darkest day, these families invite us into their lives. While I’m sure they all feel blessed to have such an amazing medical team, I believe with all my heart, that we are the ones who are blessed…by each and every child and family member we meet. Each patient and each family member brings with them, their own unique and special gifts. We really do learn something from each and every one of them and these things, these lessons that we learn, help us to provide even better care to that next child and family. We have no idea what it’s like to “walk a mile in their shoes,”  but what we can do, is help them tie their shoe laces, point them in the right direction, maybe tell them where those long dry spells are going to be and even offer them a drink of water along the way.  We get to watch them find that silver lining, even when the outcomes aren’t what we all wanted, but we get to watch them discover that special gift. Kids always talk about how much they learned about themselves along the way and how thankful they are to have such an amazing and supportive family and community.  We hear parents talk about how much they learned about their child, themselves, their other children, their family, and their community. We get to be first-hand witnesses to the love, the dedication, the sacrifices and strength of families. We can walk alongside families, but they are the ones that have to walk that journey and they inspire me. Daily.

     I used to get offended when people would see carrying toys to a child’s room, or playing cards or making play dough with a child, and they’d say, “Gee, I wish I got paid to play all day. You went to college to learn how to do that?” I would always want to reach out and with all the love in my heart, smack them upside the head and tell them about all the other parts of my job, but I never did. I’d just smile and tell them that I have the best job in the world, because I do. I’ve learned in all of my years in child life what is important; what is most important is the relationships that you build with people.

     I remember one time I saw a patient out in “the real world” and she was with a group of friends. She was so excited to see me and introduce me to her friends and I was happy to see her out in her natural environment just being a teenager. This particular patient was a teenage girl who I’d done some pretty “intense” child life interventions with. She’d undergone nearly a year of chemo and had an extensive surgery to remove a tumor from her leg. She’d been confined to a wheelchair and on crutches for the duration of that time. We spent a lot of time talking about “medical stuff,” how much cancer sucked, and had done a lot of fun things together, because after all, “play IS a child’s work,” no matter how old they are. When she introduced me to her friends, she didn’t say, “This is Debbie, the child life specialist who taught me about my surgery and helped me afterwards.” She said, “This is my friend, Debbie. We used to bake cookies when I was in the hospital getting chemo. She was my child life specialist.” That was one of the most influential moments of my career. No longer do I choose to be offended when people say, “You get to play with kids all day?” That defined for me the very essence of why I come to work every day. It’s all about the relationships we build. While we baked cookies, or played cards, or played Guitar Hero (which I was pretty good at for an old lady), we were building and nurturing that relationship. It is sometimes because of those relationships, that 

     I’m able to find out a piece of information that maybe that child hasn’t shared with anyone else yet. If that piece of information is something that needs to be addressed, I can tactfully and without breaching their trust, find some way or some one to address it.

Sometimes we just can’t do anything to make someone feel better and nothing hurts your heart more than that. What I’ve found is that sometimes it’s just doing those little things to make someone smile, or maybe even just your very presence, that matters the most. Sometimes it’s just skipping into the treatment room with a basket of snacks and armed with a witty comment that brings a smile. 

     

     Sometimes it’s just sitting silently in a room with a family when they get bad news. Sometimes it means being a cheerleader, or a surrogate parent, or a mentor, or a playmate. Whatever it means, it’s based in building that relationship.  I’ll end with my favorite quote:

            One hundred years from now,

            It won't matter what car I drove,

            What kind of house I lived in,

            How much I had in my bank account, 

            Nor what my clothes looked like,

            But, the world may be a little better,

            Because I was important in the life of a child. 

            ~ Unknown

A Gardener's Tale

It’s been a REALLY long time since I’ve written a blog. I’d like to be able to say it’s because I followed in the footsteps of Liz Gilbert and decided to travel the world in search of inner peace like in her book, “Eat Pray Love,” but alas my truth is not so exciting. In fact, I’m not even going to try to make up an excuse. I’ll just say, “I hope you enjoy reading my ramblings.” To update on what I’ve been doing, I’ll just say that life is busy, work is busy, I am busy.

I’ve decided that there comes a time in one’s professional life when you feel like you could do just about anything and it’s a good feeling. I think that’s where I’m at now.  Professionally I feel as though I’m at the top of my game. I’ve learned to stop and take the time to think through situations from all angles in a way that only maturity can dictate. Trauma? Bring it. Distract a 3-year old during an IV start? No problem. Explain a new diagnosis I know nothing about? Bring it. Whoop a child in a game of Skipbo and make them enjoy it? Daily. Act like I’m three when I’m really 50? Piece of cake. Tell a child their parent is going to die? I don’t want to, but I can do it. I know that I can deliver that message with utmost love and compassion and help them navigate those emotions and truly make a difference. Where does that come from? It comes from the heart.

 

For 25 years I’ve heard people say, “It takes a special person to do what you do.” Doesn’t it take a special person to do any job? I can name a hundred jobs that I could never ever do. Correction. At LEAST a hundred jobs. In my mind, I don’t care what you do for a living as long as you do your best. One day at the hospital, my favorite housekeeper said, “I’m just a housekeeper.” Huh? Nobody is “just an” anything. What makes a difference is each and every one of us. We’re all part of a team, whether it’s in a restaurant, a department store, a bank, a hotel, manual labor, mental labor, healthcare…it doesn’t matter. We all work together to make things happen, it’s what we do.

Where I’m extremely blessed, is that I happen to love my work. If I didn’t have bills to pay and a son to support, heck, I’d do it for free. Where else could I work with the most amazing little creatures (and big ones) that God created and learn from them each and every day?? Where else would I be invited into the lives of families in some of the most difficult times in their lives, and get to have them make a bigger impact on me than I could ever possibly have on them? Families who come from all over the country (and sometimes the world) to have life-saving transplants to give their children the best possible chance at life. Families who often have to pack up and move away from their own families, husbands, children, and support systems so that their children can have a better chance at life. Families whose children have been dealt a life-threatening diagnosis of some horrible disease called cancer, and watch them come out swingin’…and usually win.

I’ll be completely honest, sometimes I struggle with professional boundaries. Now, I don’t have kids over to my house for Christmas dinner or anything crazy like that, but I don’t think that things are always black and white. It isn't always about doing what you can for them in an 8-hour workday. Sometimes it goes beyond. I was raised to be a good Christian and to live my life in the likeness of Christ, so sometimes what I believe is being a good Christian, would be considered to be “crossing boundaries” by others. In my profession professional boundaries is a really hot topic, so I usually speak my mind, but sometimes I just “take the fifth.”

Take for example the 15-year old girl who had been diagnosed with cancer at the age of 12 and had been in remission for quite a long time before having a totally different cancer appear a couple of years later. This teen had been quite a “stinker” at times, had a lot of spunk, and we’d developed a really close relationship. When her cancer reoccurred, it was relentless. Eventually she went on hospice, but I visited her (along with her nurse case manager) a number of times in her home. Within my department, once a child is on hospice and goes home, we just get updates on their condition and that's all we're supposed to do. Visiting their home is considered “crossing boundaries,” so I’m pretty sure my visits were frowned upon. “If you don’t do it for every child, you shouldn’t do it for just one.” My reply to that is, “Well, not everyone needs the same thing.” If a child has a need and I can help, I’m going to be there…it’s what God would want me to do. How could I turn my back on them then? I’m not saying that we turn our back on the kids that we don’t go visit when they’ve been discharged on hospice…I’m not saying at all. I’m saying that this particular child and family requested visits and had some issues they just needed some guidance on and I'm thankful I had the opportunity to help. Could I have said I wasn’t allowed to come visit? Yes I could have. I chose not to. I know that the visits made a big difference to her. She talked with me about things regarding her condition that she hadn’t talked with her family about. How could I ever deny anyone that opportunity? However, I see it from both sides of the fence. I see a lot of people burn out in my field. So what’s the secret? I don’t have the answer. The best that I can come up with is…balance. Feel what families feel, but also know that there’s only so much that you can do…and then you do it. Laugh with them, cry with them, and love them. Do your best, but don’t lose yourself. Pray. Love those around you. Appreciate what you have.

I remember in college I was always told, “Don’t get too attached, sometimes kids die.” Yep, they do. But the day that I don’t love those kids is the day that I will leave my job. I know if it were my child fighting for their life, I’d want people taking care of them that loved them. Sometimes I get to watch as kids who are absolutely devastated by their diagnosis and afraid to go out in public without a wig or a hat, suddenly wear their bald head like a medal of honor, “Look at me, I’m kicking cancer’s butt.” How can that not be a privilege? It is a privilege and an honor to walk alongside these children and families and maybe get to help them understand a little better. Maybe cope a little better. Maybe laugh a little more often. Sometimes I even cry with them. Maybe I get to help them find courage they didn’t know they had…sometimes we just have to hand them the right tools. Maybe I’m not a child life specialist…maybe I’m a gardener…just planting a few seeds.

Fear or Faith…It’s Up to Us

It’s been way too long since I’ve blogged, but life has been soooo busy! For the longest time, I really couldn’t decide what to write about.  I finally decided it was time to write about my recent ONE VOICE adventure. 

Back in November, I received an email from a hospital in South Dakota that had purchased my ONE VOICE package a couple of months earlier. Because they don’t have child life specialists in their hospital, they wondered if I ever traveled and presented ONE VOICE at other hospitals. I have only presented ONE VOICE at hospitals where I’ve worked and child life conferences, but this was definitely something I had been thinking about. I hadn’t actually pursued it because…well…quite frankly…it scared the hooey out of me. For starters, I wasn’t even sure this was something any other hospitals would even be interested in. Secondly, it just seemed like a LOT of work! Not that I’m opposed to a lot of work…I put in countless hours developing all the materials…especially that PowerPoint presentation! It just seemed like a project that I could procrastinate on….so….well….I did! Now the opportunity was before me and I just couldn’t pass it up, so I enthusiastically said, “Absolutely!!” They said they’d be in touch and we’d work out the details of speaker’s fees, travel, etc.  Gulp. There was no turning back now.

Thus begins the tale of the small town girl who, once again, was in the Laaaand of the Clueless. I knew from my email exchanges that this hospital had no child life specialist, wanted to start a new pediatric pain management program, and they wanted ONE VOICE to be at the center of their new focus. Cool. Let the games begin, and may be the odds ever be in my favor! (GREAT books, by the way…check out the Hunger Games)  I strategically chose THE LAST date that they had given me as an option, knowing that I would need plenty of time to tighten up my presentation. I was right in the middle of taking back-to-back online grad classes that were making me a tired, cranky and teary-eyed woman on any given day of the week. I had some really big projects coming up at work, too, so I had to plan accordingly. In all honestly, I was completely overwhelmed. The hormone-driven-crazy-woman part of me wanted to descend into a complete and total state of continual panic. However the rational side of me, the side that said “first things first…you planned your projects in succession, just take on one at a time,” won out. I had been very methodical in planning of my projects. Now all I had to do was complete them; easy enough. I also had to remind myself….every…single…day…that I would get them all done, one at a time, just as I had planned.

When planning the presentation, I knew that I couldn’t just do the “regular” ONE VOICE presentation; I was going to have to beef it up. The nurse practitioner (NP)  and I visited about their patient population and the staff and she asked what I thought about giving them just some basic information. I gave it some thought and I decided that I would talk to them about kids’ reactions to hospitalization, how children cope, how to approach them, what words to use, and then go into the ONE VOICE presentation. Sounded easy enough….and…it was. The only thing that worried me was that whole “time” thing. The entire workshop was going to be four hours, and I was being given at least 2 ½ hours for my portion. Two…and a half…hours! That…is a loooong time! For….a lesser woman perhaps…one who does not possess a tie dye cape!! I have no problems yapping that long...the only problem…I wanted to make sure I was interesting.  I mean, I can be uninteresting when I’m not being paid a lot of money…heck, I do THAT all the time. I just really wanted to make sure I was giving them what they paid for. 

So, in true Deb Wagers fashion, I continued to put the whole thing off until about a week before it was time to board that plane. I’d given it some thought in my usual places: car, walking, shower, in the potty…so when the time came to add all my ideas into the presentation, it was virtually a piece of cake. I really wanted to worry about the presentation itself, or about my presentation of the presentation…but when it came down to it, I wasn’t really worried at all. I was just really excited. What an amazing opportunity for me!! What a great chance to go and share my passion for making the lives of sick children better!! I couldn’t wait for the day to come!! And…thanks to my procrastinating, I didn’t have long to wait!

Well…the day came. I flew, I ate, I  I drove, I got to the hotel pretty late, and then….I had the dream.  The dream that allowed me to get about…2 ½ hours of sleep the night before the first presentation. What dream might that be? The one where I showed up to school and forgot to wear pants? No. It was the dream where the other two people who were supposed to do the first hour of the presentation….forgot to show up. Yep, THAT’s the dream. I showed up to do my presentation and the other two people forgot to come.  It was one of those dreams where I KNEW I was dreaming and that it wasn’t real, but I just couldn’t wake up! Unfortunately, I couldn’t really sleep either. Oh well…yawn.

The first presentation totally rocked! When the NP was introducing me, I got choked up, literally. I had to fight the tears from flowing. She talked about how the pediatrics department had identified that they needed to do a better job catering to their pediatric population. They identified a number of things they could do better, and somehow had landed on my website, www.onevoice4kids.com.  She said that so many of the things they wanted to incorporate were all right there in ONE place. They decided to make that the focus of their workshops. I fought back the tears.  I was SO incredibly proud and SO incredibly humbled, all at the same time. I had doubts from the beginning of this project, not really knowing if there would be a market for ONE VOICE. I believed in it 100%, but there was always this little nagging doubt… “what if?” All of those doubts came crashing down at this point. I had instant validation that others believed too. Powerful, powerful moment.

The attendees were all very attentive, interactive and willing to learn. I was witty, charming and informative. The nurse practitioner said everything went “perfectly” and no changes were needed for the presentation on the second day. Score!! She was really pleased and so was I!  Now I got to have some “Debbie time!” Mt. Rushmore, here I come!!! It was a beautiful afternoon; the sun was shining, it was about 73 degrees, and I had no laundry to do, no floors to vacuum, no guilt about all the other things I should be doing. After a relaxing drive around Mt. Rushmore with the music loud and the windows down, I headed back into Rapid City for dinner and a drink. Rapid City is a beautiful little town, full of a lot of culture and friendly people. I had a great little dinner and a drink out on the patio of a little restaurant, and enjoyed the success of what I’ve created. I thanked God for His eternal presence in my life. To me, this was the finest moment yet. This was the culmination of two years of hard work..I’d spent countless hours on this whole project. From the very first day when I decided to apply for copyright, to now, this shining moment. This was it.  I reflected upon all the work that had gone into making this all happen. I didn’t have a clue about how to make any of this happen when I started. All I knew, was that ONE VOICE made a difference for children, and that was my driving force.

I made a lot of phone calls, sent a lot of emails, did a lot of talking (Gee, imagine that), and just asked a LOT of questions of a LOT of different people, to get to where I was today.

My lesson in all of this is not about “Gee, look what I’ve accomplished.” I’m not that kind of person. My message is to pursue your dreams. If you don’t know how to do something, find someone who does. If you can’t find someone who knows, Google it! If Google doesn’t know, ask someone else. Never give up. Be diligent. Work hard. If there is something you really want…that you really believe in…you can’t let fear stand in your way.

“You block your dream when you allow your fear to grow bigger than your faith.” ~ Mary Manin Morrissey

Ethical Leadership: A Cookie, a Nap and a Glass of Milk?

I have recently embarked on a new and exciting adventure….at the ripe old age of 48, I have returned to school. I am enrolled in an online accelerated program through Clarkson College in pursuit of my Master’s in Healthcare Administration. A new class starts every 6 weeks. Wow, sounds impressive, huh? I’m here to tell you that it is really exciting but has been quitechallenging, to say the least. It has been a struggle trying to juggle working full time, being a single mom and figuring out how to get all the assignments complete. My son will be turning 14 next week (insert a heavy sigh, a shaking head, and a tear in my eye) and he has been extremely supportive of my efforts, which has been a tremendous help. He’s had to make a few sacrifices as well, mostly in the way of having me as available to him. (Well, I’d like to THINK he minds that I’m not around as much!) I often stay at my office well into the evening to work on assignments (at work I don’t have a dog sticking her head in my lap!) which leaves him to have to fend for himself. In all honestly, I know he enjoys that extra independence, but I truly appreciate his efforts and miss being around him. While he doesn’t seem to mind, there is also the element of his being proud of his old mom. I walked in the other night at nearly 10 p.m., after having left the house around 8 a.m. I had spoken to him a couple times throughout the evening and shared with him that this is not an easy task for me. I struggle trying to wrap my brain around all of the concepts of business leadership, knowing what to write about, etc., and I told him that I’d had just had a “mini meltdown” in my office. To be honest, that is the “understatement of the year” thus far. At times I’ve said to myself, “What the hell was I thinking??! You don’t know what you’re doing!!!” Thankfully, these thoughts have been followed by some amazingly lucid moments of clarity… “It will all be worth it in the end. Take a deep breath…one assignment at a time…stop freaking out.” (Thank you to my calm, rational, inner voice…I knew you’d come in handy. While sometimes you annoy me, you usually know best.) When I got home that night, and before my son went to bed, he told me to put down my book and stand up. He gave me the biggest hug and said, “I’m really proud of you, Mom, and this whole grad school thing. You’re doin’ awesome.” Enough said. This isn’t just about me…it’s about my son, too. He’s learning a valuable lesson in all of this as well.

One of my assignments for week #4, was to write about what “ethical leadership” means to us. I began to formulate a basis for my assignment, and as I neared the end, I decided it might make a nice blog entry. I hope you enjoy it!

I think “ethical leadership” is a relatively small term for an extremely involved concept; a concept that will undoubtedly mean different things to different people. When I think of ethical leadership, I immediately think of always just “putting your best foot forward.” I think the basics of ethical leadership can easily be based on concepts learned in Robert Fulghum’s book, “All I Ever Really Needed to Know I Learned in Kindergarten.”

Let’s look at just a few of those lessons:

· Share everything- I think the basic idea behind this is that we should look after one another, treat each other with respect, and look to everyone as our equal regardless of our position within an organization. This can mean sharing of our time and talent, our ideas, our enthusiasm for our work and our mission, and just as importantly, sharing encouragement to those around us.

· Play fair– To me this says, “Follow the rules and no cheating.” If you play fair, people will want to continue to play. They will trust you and your actions and perhaps someday seek you out if they are in need, because they know you are trustworthy. On the other hand, if you cheat, they will lose faith and begin to question your motives in your other actions. Having a leader who is fair, will encourage followers to come to that leader with questions, concerns and ideas; you will have created a feeling of respect among those on your team and those around you.

· Put things back where you found them – To me that also shows respect. If you come into a situation as a leader and you are looking for answers, you may uncover a lot of different information. Some of this information might be unpleasant or deal with unethical behaviors. You may unearth some potentially disruptive information. After sorting through all of this information, it is our responsibility to “put things back,” meaning leaving things in better condition that when you found them. I think when a teacher or mom says, “Put that back where you found it,” they would all be pleased if we left things in better condition than we had found it.

· Clean up your own mess– How often in leadership do we have to clean up messes? Sometimes they are our own, but they might also belong to others. I think as a leader, it is important to admit if we’ve“made a mess” and to be honest from the very beginning. As children, did we get into trouble for breaking the lamp or for trying to cover up the mess? As children I’m sure our parents all said,“If you make a mess, it’s okay, just come tell me about it.” We all probably learned the hard way that we would get in moretrouble for trying to cover something up. Would this really be any different as a leader? I don’t think so. We all make mistakes and we all want to do things the right way the first time; it certainly would make life easier. However, we are all human, and we often learn the best lessons from messes we’ve made. We just need to remember to clean them up when we’re done.

· Don't take things that aren't yours – This obviously applies to physical belongings and company property, but just as importantly, can apply to intellectual property. Don’t take ideas from someone else and claim them as your own. That is stealing, plain and simple. We also need to be respectful of others when they are idea-sharing. We should all be open to their thoughts and ideas, and encourage each other to be creative. As a leader, it is imperative that we possess integrity and that we live the truth as we speak it.

· Say you're sorry when you hurt somebody – If you make a mistake, own up to it. A great leader takes responsibility for his/her actions and for the actions of the team. I think a truly great leader is willing to take the blame for their team. A true team works together for the betterment of a project or an outcome, and any shortcomings that may be seen are really a reflection of a team effort. Regardless of whether it was one person or a group of people who may not have been able to successfully complete a task, a good leader will accept responsibility for his/her team without placing blame. Selflessness is a crucial quality in an ethical leader.

· Live a balanced life– Living a balanced life outside of work is often reflected in our careers. If we are a workaholic and are unable to strike that balance between time for ourselves, our families, and our inner peace, then we are not being good role models for our followers.

· Learn some and think some and draw and paint and sing and dance and play and work some every day– This definitely goes along with balance. We all need to be in touch with our creative side, the side that is not afraid to think outside the box. Think of the carefree days of childhood where coloring the grass blue felt good, and we chose bluejust because we could. During those untroubled times, we could dance and laugh and play without fear of what others thought about us. We could start with a blank piece of paper and by the end of art class; we could have one of three possible creations. We may have created a painting that had purpose and direction from the very beginning, and we were able to make it look just how we wanted. We could also have a painting that started with purpose and direction, but ended up looking differently than we had planned. Or, we could also have a picture that didn’t necessarily look like anything in particular, we just kept mixing paints together and adding different strokes, but in the end, really didn’t look like anything. However, while we were creating, we learned incredible lessons about ourselves and our materials. Allowing ourselves to be in touch with this part of our being, will allow us to move beyond the day-to-day tasks and look toward new creative and innovative ways of bettering our companies and the communities which surround us.

· Take a nap every afternoon– Let’s just say that one is self-explanatory.

· When you go out into the world, watch for traffic, hold hands, and stick together; be aware of wonder– What a marvelous way of looking at our companies and our communities with a sense of “oneness.” This is about how we all need to look out for one another and support one another. A good servant leader will put the needs of his/her followers ahead of his own, much as a parent will put the needs of their children ahead of their own. A servant leader is concerned with others and helping them find their way in the world. A great leader will promote this sense of oneness by leading through example; showing genuine concern and compassion for those around, whether this is in their personal or professional life.

· Think of what a better world it would be if we all - the whole world - had cookies and milk about 3 o'clock every afternoon and then lay down with our blankets for a nap – I think this speaks to taking care of yourself and finding those little everyday pleasures in life. This doesn’t have to be taken literally; it could mean finding those little things in our work and relationships that make us feel good inside. Sharing kind words with one another, complimenting those around us on a job well done, or just taking a little break together.

Fulghum, R. (1986). All I Really Need to Know I Learned in Kindergarten. New York: The Random House Publishing Group.

A Year in Review.....

Wow! Had anyone told me back in 1996 that one day I would apply for copyright on this whole ONE VOICE concept, and that it would be getting as much as attention as it’s gotten, I would have said, “You’re nuts!” I will say this though; it has certainly been a wild ride!  Since I first started researching this whole process, I’ve learned a ton…about a lot of different things. I learned that there’s really a lot that I don’t know, but if you ask enough questions and Google is your friend, you can figure just about anything out.   Now, what I DO know is child life, and how we make a positive impact on our patients and families. What I didn’t know was just how well this whole ONE VOICE thing would be received. I’d had a lot of people asking about it and I’d heard talk about ONE VOICE on the child life listserve, but I just didn’t know if anyone would truly be interested in a “product.” Remember the lollipop guy on “Chitty Chitty Bang Bang?” This was even scarier than HE was, and he used to freak me out. 

Now having been practicing in child life for 20+ years, I make a decent living, but I’m also a single mom who doesn’t have a savings account (except for a few months after I get a tax refund!) Like most of America, I live paycheck to paycheck. The whole idea of coming up with money to create a “product” was extremely overwhelming. I mean, $200 might not be a lot to some people, but to me…um…yeah…my teenage son likes to have food on the table….he’s actually quite fond of it. Once I decided to just jump in feet first, I had that whole worry, “What if no one wants to buy it?!”  Gulp.

The first order of business was getting a logo. The logo was actually kind of the easy part. An old high school friend and former roommate from Iowa State, Beth Morrison Rogers, was a graphic design major. All it took was for me to ask if she’d be interested in designing something. Since I’d known her for years, I’d seen her work and knew her capabilities. I said I kind of wanted the letters of “one voice” to make a face somehow…so if you looked at it, it would be a face but you wouldn’t necessarily know that it spelled “one voice.”  Her idea was much better than mine. It took a few back and forth exchanges via email and what she came up with is what you see today as the logo.   How much did I have to pay her? Well, the bill is actually still unpaid….I owe her a beer. Now that’s MY kind of budget!

The website was my first big undertaking. I wanted…well…really NEEDED to be able to do it myself to save money, and also to be able to be in control of the content. I had no idea what I should include on the website, pricing of the products etc., so I needed to be able to make changes whenever I needed to. I knew it would be a process and a learning experience. I knew absolutely nothing about website design, but God was nice enough to have a commercial playing one night about Intuit.com. Websites started at $4.99 per month…hmm….I could scrape that up, so I signed up. Of course, adding the ability to have online shopping etc., raised the cost a little, but it’s been very easy to navigate and they’ve been good about customer service. It took several hours of planning, but voilá…it was done. (In case you’re wondering….all the cute kids on my website? Some of them are my son at various stages in his life, and others are children of some of my friends…I said, “If you want your kid on my website, send me some cute pics”, and there are a couple from the Intuit clip art collection. You know, just in case you’re wondering.)

The posters were really easy to have made…once the decision was made as to what kind of paper to use. I had NO idea there were so many choices!!? The number of paper choices probably equal the number of shoes in many women’s closets…just sayin’.  I wanted to make sure I got something sturdy enough so that people wouldn’t feel like they were being ripped off on the cost. Ever pay money for something and think, “Who’s the jerk that thinks it worth THAT much money??!”  Yeah…not on my list of wants….to be thought of as a rip-off artist.

By far, the most difficult project was the PowerPoint. In all my years of teaching about ONE VOICE, I’ve used a variety of presentations. Mostly it has been a pretty basic presentation. I would just fill it in with all the knowledge floating around in my little pea brain from all the scenarios I’ve encountered in all my years of practice.  What I’ve learned in all these years is that I apparently speak with a lot of passion. This is the same passion that prompted me to come up with ONE VOICE all those years ago. The passion that wanted to help make a difference for all those scared little kids and their families. Well, one thing I never learned, was how to bottle that passion…and better yet…how do I pass it along? Tried Googling it. Hmmm….nothing. What I needed to create was a PowerPoint that child life specialists could use to teach new child life specialists, or child life practicum and internship students. But…these people will already kind of think like me. I didn’t want to be seen as “preaching to the choir”.  Most beginning child life specialists will know the basics; parental presence, prepare the patient, tell them they’re doing a good job, have distraction nearby. Most will know about comfort positions, but might not be very polished in its practice.  I would guarantee that everyone has been bothered by having lots of voices talking at the same time, and having so many people in the room that aren’t really there for an exact purpose. I wanted to be able to teach those up and coming child life specialists an easy way to remember how to create a less threatening environment…we’re at the forefront.  But at the heart of it all, it was really about teaching others how to make a friendlier environment. ONE VOICE isn’t rocket science. It’s an easy way to remember how to look at the environment.

Creating the PowerPoint was going to be tricky. When I originally started to put it together (FYI…it took 4 months), it was with child life specialists in mind. I needed to create a PowerPoint for “the choir” so that they could go out and teach other healthcare personnel.  Knowing that there are a lot of personality types (and medical professionals) that need to have research to back up what they were hearing, I had to include some of that information as well. It couldn’t be just “because child life says it makes a difference.” I didn’t need to show ONE VOICE research necessarily, but research that backed up the components of ONE VOICE.  As I was putting together the presentation, I actually had a few emails from non-child life specialists inquiring about ONE VOICE. I realized that it needed to be bigger than what I was thinking. It needed to be designed not JUST for child life professionals, but for any healthcare professional that wants to implement it. Now I no longer had the comfort of my “choir.” The presentation had to make sense to people that didn’t necessarily think like a child life specialist. This is when my head really started to hurt. (Note to self, “Buy stock in Advil”)

And then there was the fear of having a grammatical or spelling errors out there for the whole world to see??!! I’m usually pretty hip to all the grammar stuff. Although I’m known as the grammar Nazi at work, I’m usually just smart enough to know that if I have any doubt in my mind, change the sentence around to use different wording, or Google it. It nearly sent me into a panic attack thinking I might not catch a little boo boo and would forever be known as “the ONE VOICE lady who used the wrong form of a verb on a presentation that she charged too much money for.” (I’m the kind of person that can’t even have a spelling error on a note I leave to MYSELF on my desk…I mean…what if something happened to me on the way home from work and when they cleaned my desk off, they saw the error and thought, “She didn’t even know how to spell esophagogastroduodenoscopy?”)   So not only did I worry about the content and whether it was easy to follow, I decided to add grammar and spelling to my worry list. I mean, what good are lists if there are only a couple of things on them, right?

After COUNTLESS hours of work and revisions, I sent off my presentation to several of my child life colleagues for review, a physician, two nursing colleagues (one with her PhD), and a grammar Nazi friend who has absolutely NO medical background whatsoever. This was pretty ingenious asking a non-medical person for input.  As a child life specialist, I pride myself on not being too….medical….or too…technical…I believe in “keeping it real” for folks.  What I learned was that I was actually using a lot of developmental mumbo jumbo.  It would make sense to a child lifer, but not necessarily to other medical personnel. I also had to look at some of my medical phrasing.  If it didn’t make sense to my non-medical friend, it just might not make sense to everyone.  Granted, medical staff are familiar with medical jargon, but I needed to make sure it wasn’t jargon that was too specific to my area of practice. With everyone’s input, the presentation was complete.

The ID badge cards….well….I’ll just skip talking about those…they were a pain in my patootie…but they’re cool. I also needed to become an LLC (limited liability company), open a business account and apply for a tax ID number….but don’t worry…that stuff was all in the manual I read about starting a business. Oh wait…I didn’t have a manual. It just came from asking LOTS of questions from LOTS of people whom I thought just might know the answers. Thankfully, I found some people who did know the answers.

So with all of that being said, that’s a small snippet into the past year of “production” at ONE VOICE, LLC.  It’s been a wild ride…a really….wild ride.

ACCOMPLISHMENTS:

·         26 hospitals have purchased the ONE VOICE package (PowerPoint, posters and ID badge cards), and a handful of hospitals who have purchased just posters and badge cards

·         Was asked permission to have ONE VOICE listed in the AAP (American Academy of Pediatrics) policy statement on Child Life Services

·         Was included in an article written for “Connections”, a magazine of the Emergency Nurses Association, published in December 2011

·         Featured in “The Week”, which is the employee newsletter for The Nebraska Medical Center where I work. I try really hard to keep “my worlds” separate since ONE VOICE is a side business, but hey, it was cool….I got front page!!

What a year…I have been very blessed…makes me wonder what might be in store for next year? Bring it on….

Reading, wRriting, aRithmetic and.....Child Development?

Sometimes it's hard to know what to write about...and for anyone that knows me personally, words are something I usually have PLENTY of. In fact, I remember my grandma telling me when I was just little girl,  "I remember when you were little and we couldn't WAIT for you to start talking. Then once you started, you never shut up" and she would just smile that beautiful smile that only my grandma had, and her eyes would just twinkle.  So trying to decide what to write about is sometimes a chore because I have to weed out a lot of banter inside my head.

A few months ago I went to a  one act play with a friend, that had only two characters. It was a really funny play telling about the exact same encounter in a super market one day, but from two different points of view..of the two people who had had the encounter. There was a point where the female character went on this 20 minute "crazy woman" ranting about something that happened to her in the tuna fish aisle at the grocery story. She was really just rambling wildly and continuously and flitting from one thought to the next...having good thoughts vs. evil thoughts...literally bantering like a crazy woman. She was like a woman possessed and it was HYSTERICAL. I leaned over to my friend and said,  "Oh yeah, well that's what it's like to live inside my head. What just took her 20 minutes, happens in only FIVE minutes in my head. Novice." See...here I go...rambling again...stick to the topic, Debbie. Oh, that's right, I haven't gotten to it yet.  Here it is: I FINALLY sat down and wrote a letter to our Governor about a topic that has driven me nuts for YEARS. I've had the same idea for years, and each time I talk about it, I get all fired up and say I'm going to finally sit down and DO something about it. Yesterday was actually the day.

For YEARS I’ve sat back, shaken my head, and tried to figure out what is WRONG with kids today.  There are SO many kids that are so disrespectful not only to their parents, but to classmates, teachers and their school administrators. Kids mouth off to adults that they don't even know, talk smack to upper classmen and are just plain disrespectful. (Start shaking my finger and my cane) "Back in MY day, we would have NEVER done that."  Have you ever been in a store or out for a walk,  and just had random kids start spewing disrespectful things at you or others around you? What in the HECK is that all about??!

My son currently is in the 8^th grade and attends a magnet school in Omaha, NE. He’s a great student and a really good kid and we chose to have him attend this school for the academics. This particular magnet school is located in "the hood."  We talked a lot about how kids might act differently at this school, might not have as well-defined boundaries, etc., and how it would be important to just focus on school and try not to pay too much attention to the other "stuff." We talked about the valuable life lessons that this type of environment might provide and how maybe, just maybe, he might be able to help others around him by being a good role model. But I'll tell ya'.....the stories he tells about how kids treat each other, teachers, etc., make me really angry, yet sad....and confused all at the same time.  Where in the world is it okay for kids to call teachers names that I didn't even LEARN until I was in high school? Where is it okay to fight in the classroom...and....what?....girls fight with boys??!! Fist fights? Really? You've got to be kidding. One day last year, my son broke up a fight that was happening between a boy....and....a girl....and the GIRL started it??! What the heck is wrong with society??!!  I can tell you what I think PART of the problem is, then I’ll tell you where I think might be a good place for us to start in fixing the problems. 

Obviously it would be very easy to get upset with the kids and tell them to just “straighten up. It's not okay to fight. And you NEVER hit a girl!"  Unfortunately, for so many kids today, they don’t have a reasonable idea of what is acceptable behavior and what isn’t.  They don't have boundaries that are defined in their homes.

I’ve always said, “How do you teach a low income child that they need to go get an $8 per hour job flipping burgers at McDonald’s, when they can go out on the streets and sell drugs and make a ton of money?” The answer? You teach them that it’s wrong. Period. End of statement. However, do all parents do that? There are a lot that don’t. There are a lot of parents in our world that haven't even figured that out for themselves.

And have any of you parents actually ever looked at your child's facebook? I am APPALLED by what I see some kids writing.  The filth that flies so freely from their fingers....well...that's another topic. My question is not only"Have you seen what your child writes on facebook," but "Do you even know that your child has a facebook account??!"  I actually PRAY that their answer would be "No...I've never checked it" as opposed to "Yeah, I read it. Kids will be kids." At least ignorance you can work with...teach parents that it is their RESPONSIBLITY to monitor those, IF they even choose to allow them.

Okay, so then who DO you get angry with? The parents, right? Not exactly. Most parents are doing the best that they can…and they’re doing what THEY were taught.  Parenting takes a lot of energy and patience and not everyone is equipped the same way as me and my child development degree. So inevitably what happens, is you get “crappy parents” raising “crappy kids,” because they pass on what THEY were taught. It’s just a vicious cycle. You watch teen girls fighting with each other, screaming and pulling hair, scratching, and calling each other names that you wouldn’t even DREAM of saying…where does that come from? Often times, I believe it’s what THEY see. What my son describes at his school is like an episode of Jerry Springer.  It’s deeply disturbing to him that kids treat each other that way, but they also talk that way to teachers.   There’s only so much positive role modeling that the “bused in” kids can provide. This all needs to start at home. I am a firm believer in "It takes a village to raise a child." Unfortunately what I see a lot, is schools doing the best they can, only to have parents work against them at home.  So how can we fix this? Is it an easy fix? No. Is it a quick fix? Absolutely not. Do I think we have to start somewhere? Absolutely.

Get ready....here comes my point.....

I’ve always felt that it should be MANDATORY for ALL middle school AND high school students to take a child development class. What? Why? Because EVERYONE, whether you have children or NOT, will deal with children. What would be gained through this? Role modeling, learned compassion, NORMAL growth and development, how to discipline children, and how to get children to do what you want WITHOUT yelling and hitting them. I can’t tell you how many times I’ve been in a store and heard a parent SCREAMING at their children and smacking 'em. Yes, I have been known to call security.  If I see them smack a child, and I’m not talking about just a little slap, I've called 911.  If I don't actually SEE them hit the child, but hear it, or if I hear a parent being totally inappropriate in their tone or words, I just follow them around the store…literally.  I follow them to make them uncomfortable and to make sure that if I DO see something worse, I’m there to intervene. My fear is, if parents are treating their children this way in PUBLIC, what are these precious kids having done to them at home??! And what does this teach those kids? That that is how you discipline….and it ISN’T. Most of the parents are screaming at their children for …gosh...being children.

I’m  a mom and I know full well that kids can be really annoying, ornery, etc., and that sometimes being in public almost breeds misbehavior, and that you sometimes have to yell at kids. I’m not talking about that. I’m talking about the kind of treatment that brings tears to my eyes, and makes the hair stand up on the back of my neck.

Here’s a classic example of a parent doing what they think is right...but...it's wrong: A few years ago on the radio they were talking about car seat safety, the importance of keeping kids buckled up, and whether or not it infringes on your rights to HAVE to do this. There was a young woman that called in…sounded like late teen, early 20’s in age. She was quite soft spoken, but she talked about how she holds her baby in her lap in the front seat on the passenger’s side. Naturally the radio host was trying to help her understand how dangerous this was, but this passive woman held her ground.  “I hold my baby really tight. I can protect her if we get in an accident because I love her. I can do a better job than a car seat.” She was very passionate about her answer. The radio host tried to reason with her about what happens if the car strikes something and how the baby would be crushed. She wasn’t listening. She believed she was right. “Plus, my baby doesn’t like car seats, she cries when I put her in one.” This was just lack of education. Perhaps if someone had said to her growing up, “Lots of babies cry when you put them in the car seat, you just do it anyway. Eventually they will quit fussing.”  Or if it’s regarding a toddler, “Do you know, the great thing about having a toddler (or a preschooler) is that if you say, “the car won’t start until you’re in your car seat” and then you “fake” demonstrate that the car won’t start…they’ll believe you... because that’s the way their minds think.” (I used  this on my son when he was just a little guy and it worked like a charm)

I truly believe that if we can start to teach young people appropriate ways to interact with children, even if they don’t see these behaviors at home, it WILL make an impact. They can also be taught safety…not just for any children they might encounter, but also for themselves.  Had the woman above had such a class, she would have known that it is extremely dangerous to not have children in a car seat, and that kids don’t have the ability to rationalize that a car really CAN’T detect if you’re not in your car seat. (Well…maybe there ARE cars now that can??! Sheesh.)

I really feel this would be a good place to start. We HAVE to start to teach our young people better ways...we obviously can't count on it to happen at home. This is not a quick fix, or a total solution; it's one piece of a very large puzzle.  We often have GENERATIONS of "crappy parenting" to undo.

We require that kids take 3 YEARS of math in order to graduate and let's face it...a lot of the math that we’re taught, we don’t ever use.  But it seems crazy to me that we ALL deal with children, and we’re taught nothing about them, except for maybe what our parents teach us …and herein....sometimes lies the problem.