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!!