The Gift You Didn't Ask For and a Toast to Terumo

Merry Christmas and Happy Holidays to All!


As many of you may have seen, the Wall Street Journal article featuring our family finances hit news stands last Monday, December 12. I thought they did a nice job on the article and it certainly looked better in print than on your computer screen.

I had an early meeting at the hospital last week and picked up my copies at the Starbucks on campus. In sharing my excitement seeing the photo in print with my barrista, the man behind me (who looked a little like Santa Claus) yelled out, "THAT'S SO COOL!" He then realized maybe he should have contained his excitement a little when he said, "You know, maybe that wouldn't be cool if you're in there because you're related to Bernie Madoff". I chuckled and assured him that was not the case, but explained I am related to Bernie Smith, my daughter, a point of interest in the article. Although, I must say how surprised I am that only complete strangers (oh, and my dad, a devoted WSJ subscriber) seemed excited to see the article and wanted to talk about it. Maybe that's the bummer of the blog...so many visitors, so little feedback. I am not going to lie. I love your comments! But maybe that just illustrates the eggshells we all walk on regarding personal finance. It's personal. I don't expect you to talk about the state of your personal affairs just because we did so don't worry. But I wonder...just wonder...if we were more open about it to some extent if we could have the conversations necessary with people we trust to make even better choices about what we do with our money. It's such a root of so many problems and at the same time very connected to our states of content or discontent with life. Hmmmm...

It was a fantastic day moving the PCTU (Pediatric Cardio-thoracic Unit) move to the new Mott Hospital on December 4. There were lots of people, lots of details to tend to, and lots of responsibility making sure all of the patients and their families had a stress-free experience. I will have a little more on that later, including a movie. It was a very special day! All I will show you for now is that Bernie gives the new digs a definite thumbs up.

Anyhow, on to some other fun stuff. We were very fortunate to be invited to speak to the employees at Terumo Cardiovascular Systems for their holiday party. "Who the heck is Terumo?" you may ask. Terumo Corporation is one of the world’s leading medical device manufacturers with $4 billion in annual sales and operations in more than 160 countries. Their 5-campus division of Terumo Cardiovascular Systems in Ann Arbor provides cardiac surgery products, including a full–line of perfusion products, a full line of cannulae, and endoscopic vein harvesting products (from their website). If you have ever known anyone to have cardiac or vascular surgery, chances are that Terumo was involved somehow behind the scenes. They are primarily known in Ann Arbor for making the cardiopulmonary bypass machines that keep your blood moving and oxygenated while your chest is open and your heart is stopped in surgery.

So how the heck did we land this opportunity? After our appearance at the Griese Hutchinson Woodson event a few years ago, Terumo was looking for a speaker to help them commemorate their 10th anniversary in Ann Arbor. They asked Dr. Bove (head of cardiac surgery at UM) for some help recommending a pediatric case to help their employees make an emotional connection to what each and every employee strives to do each day: Save 1000 lives. Dr. Hirsch and I went with Bernie and we had a lovely time. I heard many say there wasn't a dry eye in the house.

We each spoke to them about the importance of their work and shared our personal stories that accompany our direct experience with their products. They invited us to come back again a couple of weeks ago to speak at their holiday party to share our message once again, especially since they have hired about 250 new associates. We were to again emotionally connect them with what they do. Smart! Don't we all do better when there's an important emotional connection?

Jeff Carpenter is a Terumo sales representative from Kansas and spoke first about not only being in sales, but being on the operating table this past year for his own open heart surgery. It was a pleasure to meet Jeff and listen to his experience.

Dr. Hirsch spoke to them about the importance of their products within the context of what she does everyday in stomping out congenital heart disease. She also explained who Bernie is to her, including the fact that she's her Godmother. She referred back to that day I call "Black Monday", explaining how she came into the room with the intent of telling me we were going to withdraw support (aka pull the plug). All medical plans were to go through her at this stage. Bernie was dying. She didn't know until she was speaking to me that very morning, as she claims, that there was "an angel on her shoulder" who directed her to devise a brave new plan. This plan did not involve surgery but would induce a different, deeper coma involving some seldom used drugs and require a willingness for the ICU physicians to give her a chance even though they thought she was crazy and creating false hope for our family.

 They also showed a few snippets of a couple Bernie movies on the big screens to either side of the podium. I confessed to them that since our last visit I had also developed a habit of blogging.  They allowed me to take their picture to report to you, our loyal fans, about our visit. There were approximately 850 people who were transported to the event location via multiple buses. As you can see, this was quite an audience! Bernie was quite shy and hid on my lap for much of the time. Until the end which I'll explain in a minute.

During my time to talk, I also referred to Black Monday and explained the following: It wasn't until years later that Dr. Hirsch and I talked about it to really discuss the gravity of that morning. We went to dinner one night and I just had to know more about that day. "How did you think of that? What made you do it?" I asked. There were so many forces working against her to change the course of action. It was such a random shot in the dark that no one seemed to approve. Her response: "I didn't want to let you down".

Although this may sound like script from a LifeTime movie, I think this has tremendous implications. Her response implies a connection not only to what she does, but to the people she helps everyday, regardless if she's known them for 4 hours or 4 years. Her response to my question also implies a relationship.  That powerful connection of a relationship, in my eyes, enabled her to use her gifts that day to a greater, almost unimaginable, extent.  As a generality, it makes me wonder if we all took more time to connect ourselves with others and deepen our relationships what gifts may be realized. I think we'd discover bigger and better gifts that come to fruition because of incredible risk, trust, and caring for someone else so much that any chance is worth it.

After the presentation, we had some photos taken and, as could be expected, Bernie started to come out of her shell.  She even went up to company president, Mark Sutter, and hugged him around the knees, gesturing for him to pick her up.  That's exactly what he did as you can see from the photo. I think she tugged on his heart strings as well.

This was a terrific opportunity to once again revisit Bernie's story and think about new lessons, gifts, and realizations that have come about in the past 4 years. She's a different kind of gift. A gift I never asked for or thought I wanted. The kind of gift that many look upon with pity and as much as they may smile or acknowledge her story, they silently thank the heavens above that it's me and not them who has walked down this road.

But there are also many who understand differently. I know who they are in an instant. And they know me even though we've never crossed paths before or know the intimacies of each others' stories. Chances are if you've been paying close attention to our story over the past 4 years, you are most likely one who has this understanding.

We all expect gifts this holiday season. Not to be overly assuming, but there's usually some sort expectation of receiving a gift or two in the next week for most of us. We might not think we expect to be remembered with a gift this season, but it's there in some form, from someone.

As I challenged the folks at Terumo, I challenge you as well:

You may receive a gift this season that you didn't ask for. I am not talking about that fun and humorous white elephant gift exchange. Or the Clark Griswold "Jelly of the Month Club" gesture of grave misunderstanding and corporate greed. I am talking about a sincere gift from someone who cared enough to think of you. Maybe this gift you receive is defective. Or broken. It may be an item that's just going to take up space rather than something you're excited about.  People may encourage you to take it back or give it away. "Spare yourself the hastle," they may say. "Get something you really want."

I ask you to think of Bernie.

There may be a way to fix this item, even if it requires a talented person with specialized skills. There may be an insightful someone somewhere who can help you see that this item may have a place in your life. It may even have great purpose, but you may not know it right away. After all, the person who gifted it to you thought it was something that could have significance in your collection of treasures. This gift  may even change your life. And then again, it may just be perfect just the way it is and it's exactly what you were supposed to receive. So long as you give it a chance.

Merry Christmas, Everyone. And may your new year be full of...BLISS.

Here's a new "gift" twist on a 2011 favorite that we played for the employees at Terumo during our visit. Enjoy!

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The Scenic Route and the Smiths Hit Wall Street

I've always enjoyed getting off the beaten path. In lots of ways. Many of the choices I've made and we've made as a family reflect that. Need to get away in the summer? Work at a summer camp! Need an adventure in the summer during college? Go work at a ranch in the mountains! Tired of city living? Move north and live in Traverse City!  Looking for a more exciting environment for teaching? Be part of starting a new charter school in the middle of the woods! Then came family life. As much as Jeff and I were on the fast track in bringing little people into the world, we continue to maintain elements of heading down that proverbial "scenic route".

I love that we live in a town that is about an hour away from a major interstate highway. There's really no other way here unless you're willing to enjoy the scenery and a slower pace. If you require an expressway to get to your destinations of choice via automobile and the rush of driving at over 60 miles per hour, chances are you have not spent a lot of, if any, time in Traverse City, Michigan.

Bernie's just another trend in this pattern. We've been forced to get off the developmental "fast track" and divert our attention to the often more visually stimulating and unique details of the road that will get you there...it's just going to take more time.  This extra time requirement to arrive at particular benchmarks and destinations is something I would have once viewed as "being stuck in traffic", stirring up feelings of  frustration and feeling trapped. Being forced to take more time on the developmental continuum and accepting our less direct and quieted pace is, in all honesty, quite lovely. We are just going to get there when we get there. I am really getting used to it! That's not to say we don't experience episodes of construction or detours, or stop making headway in a forward direction. We just gain a different perspective. Maybe it's the fourth child phenomenon speaking here as well. Having to take that extra time really takes the pressure off of doing it quickly just to jump through the next hoop.

I'll give you an example. Our gymnastics class has kids of many ages, starting at 2 and going up to 4 years old. We get the parachute out. We run. We turn. We skip. We go back again and do it all over again in the other direction. Then it's under. And out. Then up. And down again. The pace is really too fast at times for Bernie in many ways. Can she do everything like her peers? No, but man she tries and does better every time. Are there 2 year-olds running laps around her? Absolutely. But she likes going to the class. Consequently, she is the first one to line up for a treat at the end. Classic Bern.

I either need a nap or a cup of coffee after the class, but it's good to get her out there on a level physical playing field from time to time. There are a few good lessons to learn about waiting your turn "on the circuit" when you get behind Bernie. Hey, we're on the scenic route! It's certainly something for which I never apologize, but I am glad the other parents recognize this and help their kids give Bernie the time to do the activities in a way that works for her. I enjoy every minute of watching her run around, chase balls, and jump into the pit of foam. Heck, I take great pride in watching that kid take in a deep breath or put a shoe on her foot. After class, we get back to our scenic route with sighs of appreciation as we click into our car seats.

Consequently, the births of each of our children has also prepared us for something of a more public existence that attracts attention. It wasn't a grandparent or close friend who was first to see us as parents.  It was a newspaper reporter. Having the New Year's baby in our hometown snagged us a spot on the front page of our local paper in our first hours of parenting.

 

And then there were the gawkers at any store when I showed up with three small children attached to my body like some sort of human carnival ride.  Just trying to manage everyday tasks in public was often quite a spectacle. I suppose we got used to just carrying on with business as usual with what others sometimes viewed as completely daunting and overwhelming.

And then we welcomed Bernie. I find it ironic that this chosen scenic route has also brought forth a wave of media attention. Bernie's scenic route has taken us on radio shows in different cities, to multiple larger-scale public speaking engagements around the state, into many of your living rooms on your TV screens,  the pages of international medical business brochures, and even seriously pitched to the producers of the Today Show. Surely this all seems to be more like the flashy, fast-paced scenery on the highway! But it doesn't stop there.

It will be in the next couple of weeks the nation will have the chance to meet the Smiths on the pages of the Wall Street Journal as we participated in an article for a column called "The Game Plan" depicting our personal finances.  The article should run in the next few weeks. It was one of those friend of a friend writes a column situations, essentially because I have chosen to share our journey with so many loyal fans. A friend asked me last summer if this was something for which she could pass my contact information along.  As the reporter claimed, we represent a portion of the population living in our country with more than just a couple of small kids close together, one with special needs, and how exactly does one plan for all that goes with that and try to retire? Apparently, they think that others will be able to also benefit from learning about our situation (not that we're doing anything that special) and from the advice of a highly reputable financial adviser who will help steer our financial future.  Here's the picture you can expect to see when it runs in physical print and online.

Photography by Scarlett

Have you ever checked the circulation of the Wall Street Journal? It wasn't until the other day that I did. It's just over 2 million. That would essentially take every Care Page entry over the past four years and squeeze the same number of hits into one day, if that. The reporter commented that stories like this seem to get emailed around a lot and the photo we submit will need to be of higher resolution for they print it in a larger format. Furthermore, in researching the topic of Down syndrome in the online archives of the Wall Street Journal, the only photo of a person with the diagnosis featured in a photograph in their paper in the past 2 years is Sarah Palin's son, Trig. Bernie's up next in a couple of weeks or so. 

So why did we choose to do it? After all, it is not our nature as a culture to disclose the state of our personal finances to close friends and family, let alone the nation. First of all, it was a great exercise to help Jeff and I get talking about our long term financial goals and continue to refine our ideas of how we want our life to be.  After that, in no particular order of importance, this was an opportunity to be proud of our state and town, our family, our hard work, our beautiful children, and our conscious decision to maintain a lifestyle that didn't center around sacrificing a quality of life for a large paycheck. Sure, we have some financial hurdles ahead of us and we will need to increase our income at some point to prepare for college and retirement, but that's life. We'll  figure it out the best we can.

It was also important to me to be sure that the photo included truly reflected us as a family and have the opportunity to share that with people in conjunction with the text. Anyone could look at the numbers and circumstances associated with who we are and perhaps be intimidated or discouraged about financial life in our shoes. But we are all happy and love our life and I feel that was captured visually, no matter how the article is spun. And who can't use a little extra, top notch, professional financial advice for free from a fee-only adviser? And if we can help others, great!

Life on the highway can be good, too.  I thought that's where I would be most of the time either by choice or by circumstance. Open highway with good tunes. There are fewer stops and unexpected turns. One can travel farther faster and have many experiences in a shorter period of time, more directly on most occasions. It can be great to move lots of people along quickly in more populated areas.  It can also be efficient and helpful when there are so many destinations and goals to ride the highway.

This positive proclamation of "the scenic route" is not as much of a metaphor for Bernie's differing developmental timeline as it is for the face of humanity.  Many of you who go out to eat with us or hit a public destination have witnessed this draw. It's simply awesome watching a person hunched over behind their steering wheel of life on the highway, they take notice of Bernie alone or with her sisters, and something just melts away. There's an impulsive and unplanned exit to a scenic overlook.  It may be in a simple inaudible statement of "She's beautiful" mouthed by a woman from across a busy restaurant. Or a man who stops to help her pick up her ball and smiles right at her, waiting for a smile back because he knows how pure it is and it might just make his day. As parents, we see this behavior in people generally when we have small children. I've seen it with my other kids, but it's just different with Bernie.  A warm glow comes over people and it just radiates in the most touching of ways. Their faces rival the best of sunsets at a favorite beach at the end of a blissful summer day. The extra compassion and patience Bernie evokes in others, and most often complete strangers, is what the scenic route is really all about.

Everybody wins with these exchanges. No matter what road you're on, there's always a route with a little more scenery that is worth every second of the extra time it takes. I really ought to ask to take the photos of these fabulous exhibits of glowing human expression next time I witness them. As Robert Frost said in his poem, The Road Not Taken,

I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I—
I took the one less traveled by,
And that has made all the difference.

						I never thought this road less traveled, the scenic route, would be mandatory, but it's also a road I've chosen to travel to a large extent. And it sure has made all the difference.  Thank you to everyone who's enabled our family along the way to enjoy it and all it has to offer. We are all truly blessed.

A Kiss...Goodbye and Hello, Four!

Like any renowned celebrity, there's usually some sort of associated controversy that gets people's attention.  Bernie's no exception. But if you're paying attention, it really isn't much of a surprise. It's the spin that matters. And it's usually the spin that makes or breaks the amount of attention paid to a particular issue.

Our banner that's featured in the central area of the hospital connecting Mott Hospital to the rest of the University of Michigan Hospital will soon come down, if it has not already. Yeah, someone complained. Before you say, "Whaaaattt!?" and become angry with the hospital (because it IS a pretty awesome moment captured and we, Bernie fans, dig the photo) we need to give the issue some consideration. But I do give credit to the team for the edgy decision to post it in the first place! A teaching hospital can be a warm, caring, and professional environment!

A first lesson of training to work in the hospital setting is to maintain and respect patients' personal space.  It's really a matter of expectations.  Should parents expect that their son or daughter's caregivers will kiss him or her as part of the care plan? Will that nursing student think s/he should go kissing her little heart patient because the banner "says it's okay"? The average viewer cannot be expected to know that it's not just some random doctor kissing a random pigtailed, yummy little girl. It's an authentic moment captured within the confines of an established personal and professional relationship.  And that just confuses a lot of people! We respect the decision of the University to replace the photo.  But by golly are we going to try and get our hands on that old banner!

The good news is that they will print another banner with this image:

 And keep your eyes peeled! From what I understand, you will likely see this image adhered to the sides of buses around Ann Arbor as well. I am not sure how I am going to capture that on film. So one image we kiss goodbye and another we share with pride.

As part of Down syndrome awareness month, I feel compelled to comment on one of the latest bigger issues for those of us in the Down syndrome community. It has to do with the up and coming prenatal tests that are hitting the market in the next couple of months.  This new blood test will allow any pregnant woman, regardless of age, to be informed with 98% accuracy that she is carrying a baby with Down syndrome at approximately 8-9 weeks into the pregnancy. It samples the baby's free floating DNA in the mother's blood stream. As you may recall from earlier posts, of the small percentage of women who currently seek and receive a definitive diagnosis of Down syndrome, 90% opt to terminate the pregnancy.  This test, along with current trends in the data regarding the number of Ds births, has many people highly concerned. As Amy Julia Becker, the mother of Penny (who has Ds), states in a recent NY Times article:

 "It’s not the test that bothers me, nor the desire to prepare well for the birth of babies. What bothers me, and what hurts our family, is the perception, often reinforced by doctors, that a life with Down syndrome is not a life worth living, or that the burden such a child places upon a family and society is simply too great."

Furthermore, according to Dr. Brian Skotko, at one of his recent lectures regarding this testing, a large percentage of physicians (I can't recall the exact percent, but it's more than 2/3) are not comfortable delivering such a diagnosis. I suppose this could be for several reasons. Perhaps they have no positive associations with the condition. Sometimes the physical characteristics are not always obvious to make such a life-changing claim to a family. Perhaps doctors are overwhelmingly convinced that there are just too many potential medical complications. Whatever the reasons, if they aren't comfortable talking to you about it, it puzzles me how women will receive positive information about the condition. I feel fortunate, and part of what seems a considerable minority, to have received Bernie's diagnosis with a positive and realistic spin. Remember the concept of spin mentioned above? Super important here!

For those of you who have never received a life-changing diagnosis for your child, I suppose I can compare this early notification of a diagnosis of Down syndrome on some remote level to the feelings and challenges associated with parents announcing a baby's sex and name  prior to birth.  As much as a parent-to-be may think it's one more thing that's "done" to prepare for a birth, providing peace of mind, other issues can arise. If unsure or disenchanted, people think they can perhaps change your mind or freely object to your decision. They are willing to say things about the identity of your unborn child that they may otherwise never say. People can and will relentlessly provide you with feedback you may or may not want to hear. You have to decide how you will respond. Knowing ahead of time may not offer you the peace of mind you initially sought. You have to know who to tune out and who will be part of clarifying those decisions. And just as names evoke opinions, a diagnosis certainly opens the floodgates for discussion, some of which may or may not be informed or accurate. 

I may also add that on a personal level, having only a diagnosis to think about, instead of a baby to hold, in the days after Bernie's birth was very difficult.  A diagnosis without the physical presence of a baby dehumanized the condition to an extent and it would have been very easy to be overwhelmed by negative feelings based upon potential medical complications and clinical statistics relating to Down syndrome. Education is key. If anyone you love receives a Down syndrome diagnosis, you can encourage him or her to connect with a family who has a child with Down syndrome and get accurate, reliable information and support from a local or national Down syndrome agency.

It is nearly impossible to glean a positive emotional response, such as that evoked from viewing this photo, from the presentation of typically communicated clinical information at the time of diagnosis. So that's my job: to share the joy of her being. Over and over. At all ages and stages. We are fortunate to live in a country full of choices which are accompanied with blessings, challenges, and responsibility. In a world where the Down syndrome population is decreasing by as much as 49% (Skotko, 2010), all I can do is offer this face and tell you how thrilled and thankful I am that I was never persuaded to deny her existence just because of an extra chromosome.

Bernice: "Bringing Victory"

Ah, birthday season. A reminder always that it's a privilege to be able to celebrate. Bernie blew out her candles by herself for the first time. It's a day that could have so easily and realistically been one for a visit to a cemetery and to pour through pages of pictures. But no!! The trials and triumphs of the last 4 years are certainly mesmerizing yet always worth celebrating. She is living proof of so many incredible truths: Face your fears, have faith, love unconditionally, embrace your support system, and know that there is abundant joy out there to discover along this road you never intended.

We never gave much thought to the meaning of her name before she was born, but WOW, does it ever fit: "Bringing Victory".  Almost to an eerie extent. Especially as I look at her next to those words "Extraordinary Victories" as she greeted her billboard at the hospital yesterday. "It's ME!" she exclaimed as she pointed to the larger than life 2-dimensional version of herself plastered on the wall. She tried walking down the hall past it, but kept her eyes on the wall as she propelled forward.

Which brings us to our appointment yesterday. Not exactly the way we wanted to spend our time, but we did it with a smile (for the most part).

Bernie had a sedated echo (let's hear it for nasal versed!) and the images and information we were able to get of her heart function were about the same.

As long as Bernie does not demonstrate symptoms of heart failure (loss of appetite, abnormal fatigue and pale/bluish coloring) we are going to wait on any surgical intervention. Victory! We will do another echo in the spring to reevaluate. As Dr. Gajarski was careful to warn, "when we are going, we're going big." I really don't expect anything else. That's just how Bernie operates. And we aim for victory.

 I like to think of her proven motto as "Go big AND go home." Why think it's an option to do one or the other? If Bernie can keep the bugs away from her this winter, we may not have the pleasure of reenacting this banner until the spring! We hope you enjoy many unexpected victories until our next update. Thanks for your love and support. It should be a lot easier now to leave a comment on this blog if you wish to do so. Thank you!!

The Michigan Difference

I remember hearing about the "Michigan Difference" campaign when Bernie was in the hospital for her first 2 surgeries in 2008. A friend of mine, George, who lives in Ann Arbor and works at the hospital, sat down with me with his laptop while I was over for dinner telling me how I just had to see this new ad because it was so moving.

It really struck a chord with me, too, and before I knew it, the music playing over and over in my head. Remember, this was about the time I started making little movies about Bernie's progress. As much as the music inspires a feeling of hope, our lives were considerably upside down at that point. In addition to her 3 open heart surgeries that year, Bernie fought off C-Diff infections quite a few times in her months at Mott.  She was in the midst of recovering from one of several bouts of C-Diff, causing some incredibly fragrant diapers that put her in isolation, when it hit me that "the rewards realized by working together" had a very different meaning. Sanitation was key. The music for the Michigan Difference campaign became the back beat of our gastrointestinal adventure at Mott in 2008. I never really shared this movie with anyone but folks at the hospital since it was kind of an inside joke. But here it is. We hospital parents all have our ways of coping so it just has to be appreciated for what it was.

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Fast forward a couple of years later to last February when I first met with the gang from Campbell-Ewald, the advertising agency who handles the University of Michigan Health System Account. They ask me if I have seen any of their ad campaigns. I said that I was unsure if I had or not. They then reveal that they've watched a few of Bernie's movies including "The Michigan C-DIFFerence". The conversation then turned to,"Ohhhhhhh, that's the work you guys do!! I suppose I do know that ad campaign!"

So here we are. The project is "a wrap" and now instead of wondering who all of those incredible people are in that commercial with the infectious tune, I know the stories behind them (and you can, too, by clicking here). I've met a few of the other kids in the ad and certainly know the battle that took our family to those 3 seconds in the commercial. It's not that you can't appreciate the battle on a very personal level when you give your child medicine on a daily basis to keep her alive, but being part of this project and seeing the final product certainly evokes a different sense of awe. To witness the gears of hope, love, medical professional dedication, and medical technology all meshing together to turn the cog of the greater wheel of life for so many beyond yourself is tremendous.

The big new ad campaign launched this week around the hospital. Word is that this photo of Bernie and the lovely Dr. Hirsch are larger than life in "the triangle" connecting Mott with the rest of the UM Hospital. We are excited to see it!

The new "Little Victors" television commercial has a few versions and airs for the first time tomorrow during the Michigan Football season-opener. After working on this project, I really do have an entirely different understanding and appreciation for what it takes to really pull this campaign together and witness so many amazing people and challenges in a few short seconds. The commercial will also be aired during lots of other popular television programs listed here.
And here's the 30 second commercial version with Bernie:

Needless to say we've watched these clips a few times around our house in the past couple of days. The kids come running when they hear the music. Bernie smiles when she hears it. What made me just about lose it though was watching Bernie watch the commercial and noting her reaction. She doesn't vocalize that she sees herself during her 3 seconds. She simply says, "Nenna" (Jenna), what she calls Dr. Hirsch. She was also quite taken with the boy, Jack, walking on the robotic treadmill. As the last note of that music plays, completely on her own, she takes her arm, raises it in the air, and waves her fist like Jack did in the commercial. I couldn't have said it better myself, Bern. This place of extraordinary children's medicine is definitely a place of extraordinary victories. Hail to that! Go Blue!

The Big Debut

As I reread the premise of this blog, it does sound quite serious in nature. Not so much on today's entry. Part of the beauty of this bonus chromosome is that sometimes things happen around the house that are plain and simply quite hilarious.

We've been enjoying summer as usual and it's holding quite true that the gifts you weren't expecting are that much better. Summer's been all about good times and good people and living in a place many are clamoring to get to.

As a former camp counselor (below in 1989), I have a bevy of tricks and structure in my life that aid in managing small people day in and day out in the summer without television.

One of those key elements that helps me out most days we are home is "rest hour". Sometimes the girls are in the house or outside, but always separated. And always for an hour.

My girls are also getting to experience camp life as I took the Big 3 to camp for our annual "Mother Daughter Weekend" in June. After witnessing friends and kids play guitar, sing songs, and experience activities requiring true creativity and resourcefulness, I can tell you camp made quite an impression on Izzy, Lucy, and Sadie.

I will also preface this story by telling you that the girls are getting much better to tuning into my conversations with other adults. They hear me on the phone talking about activities and fundraising for our local Down Syndrome Association of Northwest Michigan. We had our big Jr. Royale Parade entry during the National Cherry Festival this year where many of our members showed off their "designer genes" to the community. It's always a proud and welcoming experience.

Let's combine the aforementioned elements of the story: a guitar, some knowledge of fundraising, rest hour, resourcefulness, and a willingness to advocate for a special cause and you may find yourself smiling.

Life was fairly peaceful at rest hour one day at Camp Smith. So as the mom enjoying a moment, why not extend the time just slightly? Apparently Izzy felt the need to do a little more with her time. While I was in the house, she grabbed her toy guitar, a chair from the playhouse, and a can from the recycling and headed out the end of the driveway. She commences to sing with some passion to anyone willing to listen as you may be able to surmise from this video clip taken last summer:

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A car drives up and sees her playing. The driver gives her a dollar for her can. She proudly explains that she's "raising for Down syndrome" and what important work our association does.

I was in the house at the time of this exchange, but Izzy races in to tell me all about it. After a brief discussion on making sure she notifies me about her efforts to interact with potential strangers, I had to ask, "What did you do with the dollar?"

"Well I gave it to Bernie!" as if I could not have already guessed. I never saw the dollar, but Bernie must have squirreled it away somewhere.

After our last post, many have asked "What's next?" for Bernie. She will head back to Ann Arbor in mid-September for another sedated echo. At that point, we will again consider putting another open heart surgery on the books or waiting a bit longer to deal with this stenosis. It will be then that we fly our new "Bernie Prayer Flags" hoping for further blessings of continued health and happiness. Thanks for the great find, Auntie Annie!

We've also been cleared on all food allergies! So that is very good news. Bernie also passed her yearly eye exam and still compensates well for any eye crossing that is typical in children with Down syndrome. She does not need any surgical intervention here or glasses at this time. Yeah!

On a more exciting note, the University of Michigan Health System commercial will begin airing on national television September 7. We received word that Bernie and I made the cut and will appear for about 3 seconds. We are proud to represent the U and if you see it, let me know where and when you saw the commercial on my Facebook page. Other still shots from the campaign may also be in print in Elle Decor, Parents Magazine, and/or Delta's in flight magazine in coming months. Please let me know if you see us in any of those places as well. Thanks! Here's a refresher on those images you may see in case you missed it on the initial care page post to know what the heck I am talking about.

Photo and video editing at www.OneTrueMedia.com

And lastly, a quick movie of some of our summer smiles and antics. As you can see, it's much more fun than recovering from heart surgery! Thanks for all of your words of encouragement, continued support, and reminding us of all the great triumphs on the other side of our great trials. It hasn't all been easy, especially in that first year or so, but it sure has been worth it!!

Make an on-line slideshow at www.OneTrueMedia.com

June 4 and Home Again, Home Again Jiggety Jig

Discharge papers began processing around 10AM yesterday with a happy INR at 2.8. Yippee! We spent lots of time wandering around the hospital in our stroller. Funny how a cath lab procedure that would take the average Joe a day or two puts Bern in the hospital for a week. But that's just how we roll. Accepted. And embraced.

Embraced because of the joy in seeing this small face we call Bern. For the first time I stopped along one of our many stroller rides and looked at the massive wall hanging there because of Charles Stewart Mott.

"We approach the problems of children with affection for theirs is the province of joy and good humor. They are the most wholesome part of the human race for they are the freshest from the hand of God." Affection, joy, and good humor. Such good stuff. And that goes for all the kids.

All of the kids with the craziest incisions you've ever seen, portions of their skulls removed, ativan anger (this would include Bern yesterday),and conditions that many of us outside planet hospital may secretly wonder about in terms of the quality and worthiness of their existence. Just a reminder...these kids bring joy.

Sometimes it's easy to get caught up in the grief of a particular circumstance of the stress we envision we hospital parents have. And there's no doubt that these emotions and situations can be difficult to face, but not too many of us actually linger on that stuff in the hospital. We leave that to all of you on the outside world while we live in our little bubble. That's what I love about hospital parents. We come together for a few days, weeks, or months on our special little planet and talk about and savor the simple joys of our little ones who hold us captive there. I just like the way that Charles Mott's legacy is one that asks us to remember the joy that kids bring us, even though they can come to us with challenges particularly in the hospital setting. Thanks, Charles! Or was he a Chuck? Or Charlie? I like it.

So we enjoyed our time wandering around.

But we did get to leave. And note the date: June 4. Those of you who have read this care page long enough know that I tend to pay closer attention to matters of fate. Combine Jeff and I, our fave surgeon, a terrible accident, and one little Bern and there's lots to ponder.

I start at the earliest point of interest. Seventeen years ago yesterday, Jeff and I went on our first date in Ann Arbor on a walk with Norm, the fraternity house dog, and wrapped up the day with dinner at Red Lobster. Well, this was the first year we did not get to go to Red Lobster on the exact date, but we'll probably make it there later this week. Instead, we got to drive home on a sunny (and HOT) day, back to Traverse City, instead of hanging out in the pediatric cardio-thoracic intensive care unit. Mind you, I definitely wondered in some moment of time if we would be making the trip as a threesome. Celebrate!

Yesterday, however, was not necessarily a happy day for the families affected by the crash of the Survival Flight helicopter just 4 years ago, less than one year before Bernie came to Mott. On June 4, 2007, the University of Michigan Health System lost six heroes. These men, who died when their plane crashed into Lake Michigan after they had procured a pair of lungs for transplantation, will always be remembered for their dedication and selflessness.

Hours before this crash, one of the other pediatric cardiothoracic surgeons telephoned Dr. Jennifer Hirsch in the middle of the night and called off a heart transplant which she was to harvest via survival flight. He claimed it didn't feel like the right match and told her to go back to sleep. She would have been on that same plane that went down had the transplant taken place. The plane sat grounded until the team remembered yesterday boarded. Their story affects our story. And so we remember, too.

And we celebrate our homecoming yesterday with coffee on the back deck.

Thank you for sharing our joy as we come home for summer. We look forward to seeing you at all the fun summer activities in which we plan to partake. Your messages of happiness, support, and love mean more than you know. It's great to be home!

Cheers to Summer and Fastened Zippers!

Bernie left for the cath lab at about 10:30 on Tuesday morning. Jeff and I wandered around for a couple of hours and arrived back for the post-catheterization echo while Bernie was still a little groggy.

I am fairly sure this face says it all right here as to how Bernie feels about the major bullet she dodged yesterday.

But she honestly has no idea what was likely before her! We are glad we can go home and have a summer without worrying how everyone will fare through the recovery and parental absence periods we were about to face.

Now that we are just hanging out once again, we are doing all of those "fun" things in the hospital that are structured more for kids like Bernie. Like stroller rides outside.

There's been the medical version of Kindermusik.

We've also certainly had our share of screen time.

Visits from therapy dogs are always fun!

Gracie and Romeo are official hospital card-carrying volunteers.

And of course there's always peek a boo with Daddy.

We also cannot help but do our fair share of napping.

Today Bernie's INR is only at about 1.2 today so it does not look like we are leaving anytime real soon. Nonetheless,we celebrate the onset of summer with a toast to a temporary reprieve from the operating room!

Thanks for your great messages and love from afar. We are so glad you are out there and there for us when we need you...and your time will certainly come back! Bern may even just make it back to school next week!

:) Missy