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.

More Butterflies from Princess.....

Okay, so I just felt like I needed to do an addendum to my last blog “Always Look for Your Butterflies.” If you haven’t read my last blog, please take just a moment to do so…it will help you understand the significance of what I’m going to write about now.  This story isn’t really meant to be preachy, but I am definitely a very spiritual person. I just couldn’t pass up the opportunity to share this story of His presence in my life, and how we all have to be open to that presence…and sometimes...you don’t have to look far at all.

On Tuesday of this week, I went to Princess’ visitation. I spent some time visiting with her mom, and then some time at her casket…and she actually did look like a princess….sparkly pink lip gloss and all.  I then stopped to visit with her grandmother. We visited for a very long time. We shared stories that made us laugh and cry, and she told me stories of Princess’ last few days. We had done a lot of pretty significant sharing, so I decided to share with her the story of my butterfly…the swallowtail butterfly that reminded me that child life is what I’m supposed to be doing right now.  As I finished my story she said, “Did you say it was a swallowtail butterfly?” I replied, “Yes” and then she asked, “Did you see the picture of Princess when you signed the guest book? Did you see what she was holding?” (This picture was taken the month before at her Uncle’s wedding; she was the flower girl. Princess was such a beauty and extremely photogenic. She was dressed in a beautiful off-white satin dress, with flowers in her hair.) I said that I did see the picture, but didn’t pay attention to what she was holding. “Debbie, she was holding a butterfly…a swallowtail butterfly.”

Tears immediately began to sting my eyes...this was the same kind of butterfly that God had sent to me as a sign the day before Princess died. “But wait, Debbie, it gets better” said her grandmother. She proceeded to tell me that four days before Princess died, she was at her grandmother’s house and they were out in her backyard. There was a butterfly flitting about and Princess said, “I want to hold the butterfly, Grandma!! Catch it for me, Grandma, catch it!!” She said that the butterfly had landed on one of the bushes so she went over to see if she could catch it. She said the butterfly sat perfectly still with its wings pressed together, seemingly waiting to be picked up. She picked up the butterfly and took it to Princess who held out her finger. Grandma put the butterfly on Princess’ finger.  She held it for a short time and admired its beauty, all the while talking about just how beautiful it was. She then raised her finger to release the butterfly.

It was, naturally, a swallowtail butterfly.  

Her grandma told me that because Princess loved butterflies so much, they decided to have a butterfly etched on her headstone. Two days after she died, Grandma decided to go out into the yard and see if she could find a butterfly to take a picture of…they wanted a picture of one of her real butterflies for her headstone. Grandma went out into the yard to look for a butterfly. She found one sitting right on that same bush. She thought there was no way that butterfly would sit there while she got close enough to photograph it. But that butterfly did sit there while she went to get her camera. When she approached, its wings were pressed together, but as she inched closer and zoomed, the butterfly opened its glorious wings and just waited. Grandma did get that picture…she got the most beautiful picture of that butterfly, and I think by now, you know exactly what kind of butterfly it was….

Princess’ grandma and I both cried…all over again.

You always have to be looking for your butterflies….you just never know where they will be, or when they will appear….but it’s usually just when you need them.

Look for Your Butterflies.....

Wow. What a crappy week. Sometimes we just all have 'em, but jeez...this one was really rough. I'll take out of the equation the fact that my son is gone for 10 days with his dad on vacation which has certainly been an experience for me because I've never been away from him for that long. However, my crappy week was really based on the death of two of my patients, one who was 14 and one who was only four. Both equally tragic in their own right, but putting them in the same week  just seemed a bit excessive to me, Lord...with all due respect.  And then there was the 6 year old who is so horribly ill that when I went to visit, he just didn't even look human. What the heck is that all about?

If you work in health care, you know that this is just the way it goes sometimes...comes with the territory. However, it doesn't mean you ever get used to it.  I mean, can you ever really get used to it? I don't think so....you just do the best you can and try to deal with it as it comes; rely on your coworkers for support, pray more, give your children more hugs.

Well...this week was exceptionally rough. I've always looked forward to when my little four year old friend would come in for chemo, blood, platelets, dressing changes...we'll call her "Princess." Princess would come in a couple times a week, unless it was a chemo week and then it would be four days in a row. We'd formed a pretty special little bond. The crazy thing about Princess was, she didn't know that if you are dying, you are supposed look and act sick. The fact that she was unaware of how she was supposed to look, actually just made it harder for everyone...family and staff included. We just couldn't understand how she could be so sick, and act so...not sick.

I was already feeling extremely saddened over the death of our 14 year old who died early Monday morning when Princess came in that same morning for platelets....and she was in rare form....so...much...fun! Although I was sad inside, she brought smiles to my face and sunshine to my heart like any other day.  She was really, really, REALLY good at that. She had just the kind of beauty (inside and out) that made everything around her magical. After she left that day, her case manager told me that she had an exorbitant amount of blasts (leukemia cells) in her blood...which essentially equated to...she's definitely going to start feeling sick pretty soon.

The next morning she came in with severe leg pain... came in writhing in pain. This wasn't an easy thing for any of us to see our little Princess in so much pain, especially when she seemed just fine less than 24 hours earlier. Unfortunately this whole scenario played out again, the very next day. We all have those kids who just melt our hearts...and to say that Princess melted my heart, is probably the understatement of the year. When she left that very last day (Wednesday), I knew I'd never see her again. At this point, I just needed to get out and go for a walk...right away.  I called my friend, and walking buddy (I'll call her Kay), to see if she could go...right then and there....for a walk. Kay is an inpatient child life specialist, who had also been having a really crappy time with lots of tragedy in her teen population. We used our walks, not only as a way to get exercise, but we often tried to tackle work issues or occasionally tried to solve world peace. Thankfully, she was able to go with me right then, which was a blessing. We both just needed to go outside of the hospital walls and walk off our sadness/anger/frustration.

So our walk consisted of exactly what it needed to consist of...yelling, crying and questioning. "Why, God, does this have to be so hard??!?!!" "How is this fair?!!" We tried to console each other with words that just really can't make any sense about why kids have to die, because there just aren't any good reasons or words for that. So we walked, we cried, we yelled, we questioned, and then we cried some more. We talked about "signs"...and how we've each asked God for signs about different things in our lives. And then we talked about how we've struggled to figure out if what we were seeing really was a sign...or just our overactive imaginations. I was telling her that it always seems that just when I start to question if this is what I'm supposed to be doing with my life, inevitably, I get a call from a patient...just wanting to say "Hi", or to let me know that they're in the building for a checkup and can I come visit. I told Kay, that those always seem to be my signs from God. When I question, He delivers an answer to me in the form of a patient whose life I've touched...or probably more accurately, who has touched MY life. And honestly, He's usually very prompt. :-)

At this point in our conversation I said, "I don't know. Maybe I'm supposed to do something bigger? Maybe it's time for me to move on? Maybe child life isn't what I'm supposed to be doing anymore, it's just too hard. Is this what I'm supposed to be doing?!" No sooner had those words crossed my lips, the most beautiful swallowtail butterfly crossed our paths. Not only did it cross our path, it dang near hit me in the face! Literally....I felt it fly past my nose. We both stopped dead in our tracks and looked at each other in awe. Kay said, "Wow." I said, "I guess that's our answer." I can't say that before that day, I'd ever seen a swallowtail butterfly in Nebraska? I see lots of those common yellow and white ones and lots of monarchs, but swallowtail? Nope. Sadly, Princess died that very next morning.

We've talked about this since it happened. What were the odds that Kay could go for a walk with me at that exact time, that we would take that exact path, that the butterfly would fly by me at that exact moment in time? Coincidence? I don't think so.

Always be looking for your butterflies.

A Hundred Years from Now......

 ....it will not matter what my bank account was, the sort of house I lived in, or the kind of car I drove...but the world may be different because I was important in the life of a child” by Forest Witcraft.

This is one of my all time favorite quotes....and one that helps bring focus to my life in uncertain times. I'm sure you've all experienced the same problem…the “Wah wah” moments?  YOU know the ones...it just always seems to stockpile..."wah!" on top of "wah!" on top of "wah!"

I get them from time to time and get on my pity pot; "My house is too small....my house is a mess....I wish I had more money....why do I live so far from my family.....why do I live so close to my family....why doesn't the world revolve around me," etc. One thing that working in health care does...it humbles you. It helps you keep your life in perspective. Inevitably when I'm having one of those days where I just can't understand some of the choices I've made and I’m having a hard time trying to kick myself in the butt, I go to work and get a dose of other peoples' realities.  They have loved ones fighting for their very lives. Perhaps a child newly diagnosed with a life threatening/altering condition. Or there’s a parent who has been in a tragic accident, or one who is losing their battle with cancer and facing the reality that they will have to say their goodbyes all too soon. That’s when I always end up telling mySELF to "shut up and quit whining!"

What brings light to my heart?  Children.  And not just my own son (who is 13)....although he is by far the most important thing in my life. He and I have always had a uniquely wonderful bond. I think it’s partly from being a single mom; we always have each other's back. He’s a lot like me and definitely has inherited some of my better traits....and…a few of my not-so-great ones! Sometimes when I’m on my pity pot, I whine to myself (or if they’re lucky, I whine to others) because I am the sole person responsible for getting my son everywhere and doing everything for him. My family lives 2 hours away, and although his father is local, I'm not able to rely on that help (which would be a totally different blog that I choose not to write about). Then there’s always the “I wish had more money....I want to be able to provide him with this or that, or be able to go here or there, or not have to shop at discount stores (one of my life goals is to buy a real box of cereal), or worry about how many years it will take until I can get a bill paid off.”

Not long ago, one of my friends (from a dual income family) was flabbergasted to learn that I'd never had a manicure or a pedicure. Well....there are choices you have to make in life and we all have to make 'em every day. I choose to go without some things in my life (as we all do), so that I can afford to do other things that include my son, or so that I can buy him the new $300 baseball bat that is required...and one day, that real box of cereal.  

Ahhhh.....do you hear it? These, my friends, are the "Wah wahs!!" Beware of the "Wah wahs". They can really take a toll…if you let them.  But at the end of the day, none of it really matters. What matters most to me is living a good life, taking care of myself, setting a good example, loving God, and raising a good son. I want to raise a son who loves the Lord, who is compassionate toward others, is a good friend, husband and father. A son who knows right from wrong, makes good moral choices, is strong enough to stand up for what is right, and to stand up for those who aren't able to speak up for themselves.

It’s equally important that we are able to influence positively, those children around us. I really have the greatest job in the world! I have the ability to affect children’s lives…every single day, and that is a blessing. To look into the eyes of a child or teen who is potentially facing a new diagnosis of cancer, is a powerful thing….truly powerful indeed. There’s the “deer in the headlights” look, the tears, the sadness, the anger, the fear…it’s all there. And it’s there in the eyes of the parents too.

I get the opportunity to help prepare them for what the next few hours and days are going to be like; prepare them for what lies ahead; arm them with the swords for battle. Knowledge is power and with power, comes strength and courage. Telling kids what will happen, how it will feel, what their job is going to be and helping give them the tools to perhaps have a more positive experience, is a privilege. I also think it’s important to sprinkle in a little well-timed humor (hmmm…a future blog topic?)…and a few smiles. For those who know me, I’m a bit of a silly heart...although if you ask the patients and families, they’ll just say I’m plain nuts. And I take that as a compliment.  :-)

Kids and families just don’t know how to react to this word, “cancer.”  I mean, really…what the heck… “I have cancer?” As you can imagine, this is extremely intense. It is sometimes a very delicate art; being able to balance caring, compassion and empathy, without going overboard on emotions. They have to hear what we are telling them, so sometimes it just takes a couple of repeats. But by inserting a little humor here and there, I’m able to relay that life is going to go on and they are going to be a part of it.  I want them to know that  it’s still okay to laugh (in fact it’s a great stress reliever), that our team is going to be by their side helping them navigate these unfamiliar waters, and we’re going to do it with strength, determination, humor and love. 

 Heck, sometimes I just get to play Skipbo with a patient, or build a rocket ship, or read a story…or just make them smile. Play is just as powerful as any other tool.  Really?  Play? Yes, play. In fact it was Plato who said, “You can learn more about a person in an hour of play than in a year of conversation.”  How true this is. Kids look forward to coming for their outpatient treatment and trying to beat me in a game of cards (but they rarely do!), or doing a craft, or blowing bubbles while they have their dressing changed. Wow…what an amazing job I have!  I get to touch kids’ lives every day...and I get to touch their hearts as well.  And….they touch mine.  

Do I still wish I had a bigger house? Yes. Do I still wish that it wasn’t messy? Yes. Do I still wish that I had someone to share life’s up and downs with? Yes. Do I wish I had more money? Yes. Am I thankful for all the wonderful gifts God has bestowed upon me? Yes! ABSOLUTELY!!

So when I get the “Wah wahs”, I recall these 44 words that really say it all….

“A hundred years from now....it will not matter what my bank account was, the sort of house I lived in, or the kind of car I drove...but the world may be different because I was important in the life of a child.”

Gee...I wish I could play all day...

If I've heard it once, I've heard it a million times.....YOU know what I'm talkin' 'bout...."Gee, I wish I could play all day."   My first inkling is always to say, "You could, you just picked the wrong career...haha".....but.....I don't. Of course, that statement and the ever-famous, "You went to school to learn how to play" are both capable of getting our hackles up...and absolutely free of charge!  But....what DO you say to that? Well, for me it depends...on the situation, who said it, the "personality" of who said it, and....my mood.  Often times, I'll just say the above statement; it usually gets a laugh.

I've found that people who make those comments, generally mean no harm.  It's often an expression of appreciation for what I'm doing, and a genuine desire to join in on the game of cards....or cooking activity....or playing Rock Band. However, these people are also not usually around when I'm trying to help kids cope through some medical procedure where they are terrified. Or when I'm making hand molds of a child who has died. Or when I'm telling a 7 year old girl that her daddy isn't going to get well and will probably die today, while her mommy is numb and sits quietly crying. I've never had anyone say to me, "Gee, I wish I got to tell that little girl her daddy was going to die."

So what exactly DO I say? Usually, not too much. Sometimes just something generic like, "You know, it's times like this, when I do get to sit and help a kid be a kid, that has the ability to wipe away all the other parts of the job that aren't so much fun." Face it, is it in front of a child or family that you want to say,  "Oh yeah, well....just 1/2 hour ago I was making hand molds for the family of one of my favorite patients who just died. It was horrible. They didn't deserve to die, and now I have to sit here and pretend like I'm not heartbroken."  Nope, this probably isn't the right time.  And it truly depends on who it is and how it is said. If it comes from a nurse who generally doesn't understand child life, and might truly believe what he/she is saying, then I might chalk it up as a teachable moment....later. If it's another patient who sees me playing cards with a pediatric patient while they're receiving chemo, I don't worry too much about it. I think that most visitors see the name badge and just know that the hospital probably isn't going to pay money to an employee JUST to sit and play cards.

And here's what I've learned in my 20+ years of child life practice...I can do some of the "meatiest" child life interventions with a patient....I mean....REAL child life stuff....and what the kids always tell their friends is, "This is Debbie. We used to play video games together." I had one patient, a 17 year old, diagnosed with osteosarcoma at the age of 15. He spent weeks at the hospital right after diagnosis and had chemo every three weeks for a year. His tumor was above his knee, and in the middle of treatment, he had a rotationplasty (might need to google that one).  Essentially, this is an operation where the surgeon amputates mid-thigh. Then the surgeon makes another cut just below the knee. The portion of the leg from mid-thigh to below the knee, is discarded. Then the surgeon takes the lower portion of the leg (the calf and foot), turns it around 180 degrees, and reattaches it to the femur....mid-thigh. Sound freaky? Yup. Google it. What the patient now has, is a leg, with a backwards foot and calf, attached at his thigh. Why would they do that? The backwards foot then serves as the patient's knee joint and gives MUCH more flexibility than any standard prosthesis could ever give. They have a much more functional knee joint and can do things that they might be able to do as easily with a standard prosthesis. So what's my point? I don't remember....what was it? Oh...that was just a little background on my patient....we had been through a LOT together. We talked a LOT about that upcoming surgery, how he was going to look like a freak, no one would ever love him, etc. Then he got a life threatening infection at one point. As I sat in the PICU with him, holding his hand, with tears in his eyes he said, "Debbie, I'm not ready to die yet." Yeah, heavy stuff. This is the kind of stuff I'm talking about...the stuff not everyone sees. My point is, I had a really great working relationship with this patient....I'd been by his side through a lot of rough times. On the rare occasion when I'd meet someone in his family or a friend (he lived two hours away), how do you think he introduced me to them? "This is Debbie. She taught me about what it's going to be like after surgery. She held my hand when I thought I was gonna die. She told me that despite my physical appearance, there would someday be one VERY lucky girl (probably several) who would fall in love with me because of me." Nope. Guess again. He said, "This is Debbie. She tries to beat me in NCAA Football on the PS2." Yep, that's right. And for the record....I usually DID beat him...usually. Not so much because of my great PS2 skills, or because I understand the game of football and all its plays. More so because I had absolutely NO idea what I was doing. Oh...I'm pretty convincing. I squint while looking through the plays, look like I'm really evaluating my options...trying to outsmart whatever my opponent is doing. What I'm really doing is looking at the pretty patterns of the plays, planning dinner, wondering if my son got his homework done, and whether or not the gallon of milk at home smells funny?  Ahhhh....the wicked ways of the child life specialist.

So that's my point. See....I did have one. A "play lady" isn't the worst thing I could be called. There are a lot worse things I could be called....in fact....I've been called a few of ém. I used to get all bent out of shape about it. Now I see it as harmless banter or as a teaching moment....at the appropriate time. I always try to keep everything pretty lighthearted....don't want to be getting all visibly flustered...that won't do anyone any good. Keeping a cool head, using a sharp mind and NOT a sharp tongue is the way to go!!!

"Sit, Ubu, sit! Good boy!" Woof!

Okay, so teaching a dog to sit can be a LITTLE intimidating if you've never done it before...and how about getting a dog to fetch?? Fetching isn't really the hard part...it's getting them to DROP the ball/stick....that's the hard part!  So how in the world do you teach an old dog new tricks?? I thought I'd share a little story about how I "trained" the nurses in my area to use the comfort positions. Okay....so "trained" isn't really the right word, but it does go along with the title....so cut me some slack. :-)
The year was (about) 1995, it was Hurt Alert Day at my hospital and I was attending a seminar being offered. One of the subjects the nurse was teaching was Mary Barkey's Positioning for Comfort. This was the first that I'd ever heard of this. What? Really? Not make kids lie down while we "help them" hold still by laying on top of them and smooshing their cute little noses into our armpits?! Count...me...in!! Now, you've got to remember....in 1995 this was a new concept and this was the first I'd ever heard of it.
At this time, I had been practicing in child life for about five years, and had recently started in a new area. I was covering two outpatient areas, as well as the PICU. One of those outpatient areas was a GI clinic/lab.....affectionately known as the "butts and guts" lab. When I'd first started in GI, one of the nurses asked me what I thought about....the use of.....(insert spooky organ music) the papoose board!?! For any non-medical people who might be reading this, a papoose board is a flat board, with wide fabric straps that are used to restrain children when they are having procedures done. Think of...well.....think of a straight jacket...that'll give you a pretty good idea.  Well, heck....I knew I didn't like using a papoose board...but that was about all I knew. I didn't have ANY idea of how to do things any differently.  (It was 1995 people....we didn't know any better....yet)
Well, the nurse at Hurt Alert Day, did her blurb on positioning for comfort and was such a believer, I just couldn't WAIT to try it out!!  But then came the thought....how do I get the staff to let me try it out?  I was new to their area, hadn't really fully earned or established their trust yet, etc.  I had to approach this delicately....it's always a balancing act....you have to be a little pushy....but not too pushy.
Thankfully, this wasn't even an issue that day. One of the GI nurses had also attended the seminar. Later that day she said, "Hey Debbie, what did you think about that positioning stuff? Maybe we should try it here?"  (Ding, ding, ding~we HAVE a winner!!) Of course she wasn't exactly sure what the rest of the staff would think of it, so this is where I had to get my creative child life juices to flowing....hmmm....how could I get staff to try something new? What was an offer they couldn't refuse?  I could try the old "it's best for the children" routine, but that still presented the possibility that they might resist.  Hmmm.....what could I try? (Tapping finger on chin, eyes gazing thoughtfully in the air) Then....in a flash....I had the answer; the offer they couldn't refuse.  Confident that my next project would be how to solve world peace, I walked into the GI lab and announced, "I went to that Hurt Alert Day seminar, and Val (the original nurse) and I learned about something called Positioning for Comfort. We'd like to give it a try tomorrow. So, if you all agree to let me use the comfort positions on all of our patients, I'll bring you bagels in the morning....with....cream cheese.  Not the wimpy store kind of bagels....Bruegger's Bagels."  In my head, I could hear the sound of their "ooos and ahhhs" just like when they show the prizes during The Price is Right's showcase showdown. "Food? That's your secret, Debbie? I thought you'd have some magic words to utter." Heck yeah, people!! Food IS the magic word....don't EVER be afraid to try bribery!!!  I mean, c'mon, we do it with our children...why not our coworkers?  That's what I did. I shamelessly bribed my nursing staff with food. And....it worked.
That next day, we had four patients in the toddler/preschool age range, which were typically the ages that our nurses were most likely to want to "help."  Guess what happened?  The clouds parted, the sun was shining, the trumpets sounded and the angels sang....all of the children were cooperative. Now...we all know that even if we do everything right, kids aren't always cooperative....but on this day...they were. Oh, but don't worry, I had my responses ALL prepared just in case the IV didn't go in on the first try. Heaven knows that when you let a kid sit up and the IV doesn't go in on the first attempt, sometimes a nurses initial thought is to blame it on the positioning. "Well if we'd have made him lay down, we could have held him better." Ever heard THAT one? All the kids that day were cooperative, the IV's all went in on the first try, all the nurses enjoyed their yummy bagels and cream cheese, ane we all lived happily ever after.  Sort of. The next day (with NO bagels and cream cheese nearby) one of those same nurses was looking for the papoose board. Sheesh. A child life specialists work is never done!! (Don't worry....we DID end up using the comfort positions that following day and every day after that!)

A nearly perfect ONE VOICE experience.....

Don't you just love when people actually let you do your job?? I don't really mean to be critical, but it's just so refreshing when people understand not only YOUR role, but also THEIR role!
I had a near perfect ONE VOICE experience on Friday....just thought I'd share it.
I work in an outpatient treatment center that services primarily oncology and solid organ transplant patients. If you need outpatient chemo, you come to us.(Now, I also cover the peds Hem/Onc clinic and radation oncology, but they're not the focus of my story today.) If you need a PICC line placed and you're outpatient, you come to us. If you need IVIG, lab draws from your port or line, outpatient antibiotics...you come to us. In our treament center there tends to be a core group of nurses who like to take the pedi patients, the others...not so much because"kids are harder." Friday we had a little 2 1/2 year boy who came in for IV antibiotics. He is a liver/small bowel/pancreas transplant recipient that I've met on a couple of occasions. He is in the custody of his grandma and she takes really good care of him.
Since a majority of our patients have lines or ports, I didn't even think about his possibly needing an IV...I was prepared with the toys to keep him busy for his 2 hour infusion. His primary nurse (nurse #1) was a nurse who doesn't often take care of our peds kids. She started to put "little dude" into the crib while another nurse (nurse #2....see how I name them so cleverly? It's a gift.) came in. Nurse #2  generally does take care of our pedi kids. I assumed they were doing their "checking the wristband" duty, but quickly realized they were going to start an IV.  Now...we all know that you sometimes have to tread lightly around staff you don't know quite as well, and since I didn't know nurse #1 my brain immediately went into the "Hey...hold on, I've got a better way to do this" mode.  All of a sudden, "Tra la la la"....nurse #2 said, "Why don't we do one of those 'sitting on the lap' holds you were showing us?" (Immediate internal heavy sigh of relief...we've got ourselves a believer!!)  Nurse #1, on the other hand, didn't have any idea what we were talking about but was willing to try. ANYTHING to make it easier was her motto. BEFORE I worked in the treatment center, I had done some inservicing with the treatment center staff about ONE VOICE. About this time last year, we were able to add a child life specialist to the treatment center; they've only been accustomed to someone bringing them toys in an emergency. It's been exciting to provide child life services to this area and define what that looks like. I've done a couple "quick inservices" about positioning and distraction for some of the staff and most of the staff have been very receptive to "trying something new."
At this point, I backed up the turnip truck and started where we should have started at the beginning, by asking G-ma what works with "little dude." She told us that he does really well sitting on her lap. Ding, ding, ding...we have a winner!!
From here on out, it was ONE VOICE heaven. Little dude sat on G-ma's lap, nurse #1 did the IV, nurse #2 assisted and I blew bubbles....the PERFECT scenario. G-ma knew exactly what her role was, she kept his other hand away. The nurses knew their job, to get the IV done and let child life do the distraction. Now...I've always had no problem producing hot air at a moments notice...talking is one of my greatest strengths (and weaknesses), so blowing bubbles is NOT a problem for me. (I can even do it with saliva. Oops...tmi)
Picture this: Little dude sitting side saddle on G-ma's lap, G-ma keeping little dude's hands away from the IV start, nurse #1 squatting down doing the IV, nurse #2 assisting, child life blowing bubbles, little dude popping bubbles and smiling. The only "oops" of this scenario was lack of EMLA. However, our transplant kids have such limited vein access, you'd literally have to slather them in EMLA...head to toe. Sadly for this little guy, he'd been poked enough in his short little life, that he didn't really fight a whole lot. He started to fuss...and then....the bubbles took him to his happy place. It was just a great situation...everything worked beautifully. Not only did this make it better for "little dude" and G-ma (who said the bubbles really made a difference...he usually resists), it also demonstrated the power of positioning, play, and not a lot of chatter going on. Nurse #1 and #2 got a dose, first hand, of creating a less threatening environment and how distraction can make a positive difference. Sometimes this is all it takes to get things started in the right direction....one positive encounter at a time....and I didn't even need to throw a shoe!

No one seems to be listening....can I throw my shoe??!

When I set out in 1996 to create an acronym that would teach people how to provide a less threatening environment for children undergoing medical procedures, I never dreamed I'd be blogging...probably because I didn't even know how to turn on a computer, and blogging wasn't even a word back then.  Honestly, during my senior year of college, Iowa State University decided it was about time to computerize the library. I never went back.

Here it is, 15 years later and people have been talking about "that ONE VOICE thing I heard about."  Did I dream 15 years ago that I would apply for a copyright on ONE VOICE, start my own website, present on ONE VOICE at the National Child Life Conference, create a PowerPoint to sell as well as other merchandise? Um....heck no!! Am I glad that I have and that I am??!! Heck yes!! What an exciting journey this has been!!  My main goal has been to empower other child life specialists to help health care professionals create a less threatening environment for our pediatric patients. I hope you enjoy the ride as much as I am!! Well....as much as I am now that I'm over the "I have so much to figure out but don't have any money and don't have a clue what I'm doing" phase. I still don't have it all figured out, but hey, it's definitely getting better!!

If you stumbled onto this blog by accident, click on the following link to see what the buzz is all about...http://www.onevoice4kids.com/

Probably the one question I get asked the most is, "How do I implement ONE VOICE? I totally believe in it, but I'm not sure the nurses will buy into it?"  That's a great question...and unfortunately, not one that has an easy answer.  (What?! This ONE VOICE lady doesn't have all the answers?!! Well as a matter of fact I do, but I can't always get everyone to listen either!!) This is what I've learned in my 20+ years as a child life specialist...contrary to popular belief, we can't always perform miracles. We don't always have our magic bubble wand, pop up book or iPad that is going to make everything all okay. What we DO have though, is a working knowledge that the elements of ONE VOICE will absolutely make a difference to the children we serve! We just have to get the staff to listen....not always the easiest of tasks.
My best advice is this; start with the ONE VOICE PowerPoint Presentation. There is enough information in this presentation to back up what we're saying. It gives the components and the rationale. Not only is it a great tool to teach child life students about creating a less threatening environment, it also has a lot of information geared toward the medical staff who "just don't think like a child life specialist." Do you have staff that need to have research behind it in order to believe it? The PowerPoint has it.

What I've found is that usually, each person attending the PowerPoint presentation will identify with at least one element of the ONE VOICE philosophy; there will be at least one thing will make sense to them.  (What??!! Won't they just take my word for it that it all works? Um...no. If they do, then call me...I'll want to meet them!)  If you stop to think about it, getting a staff member to buy into one element of ONE VOICE is probably better that what you had when you woke up this morning, right? But what happens if another nurse doesn't buy into the same component?  What if he or she actually makes sense out of a different component? Ahhh....this is the beauty of it all. What inevitably will happen is that they will convince each other that the component they believe in, makes sense. Now instead of having staff that might have only believed in one component, you may now have staff that believe in two components...and you didn't even have to call in back up!! Once you've got them talking, you just need to make good examples of what you see them practicing, "Wow. It really made a difference when you let that little girl sit on her mom's lap. I know she still cried, but it really made a difference to both the patient and her mom!"  See where I'm going with this? Chances are, different components will speak to different people so hopefully this will work to your advantage!

From here, now you just keep it fresh in everyone's minds by talking about it, making good examples out of those practicing the ONE VOICE components, and with the ONE VOICE posters and ID name badge cards.  (All ONE VOICE merchandise is available from http://www.onevoice4kids.com/) The posters work really well when placed in break rooms, staff bathrooms and when tattooed to staff foreheads!!! (Remember...if you DO decide to go the "tattooed foreheads" route...make sure you practice ONE VOICE!)