November Called: No Immunity for Superfans

Time to face the music…pun intended.

Welcome back! So it’s a longer one.  What do you expect after over a 2 year+ hiatus from blogging? I think it’s worth it though.

If you are not up for reading a bit this afternoon, let’s just use the album title to get the short list of questions answered:

The Answer is “Yes!”

• Did you go see Jason Mraz again? YES
• Was it a fantastic show? YES!
• Is Bernie going to have her next open heart surgery soon? YES!
•  Are you going back to Ann Arbor? YES, May 11 (cath lab May 13, operating room for 4^th open heart surgery May 14 to remedy the obstructive tissue growth around her aortic valve known as “subaortic stenosis”.  We are not upgrading the size of her prosthetic mitral valve at this time.)    
•  Are you expecting it to be difficult? Yes! Gone are the baby days of easy sedation and turnover to staff. She fully understands fear in this matter and talking her down for the simplest of procedures doesn’t really happen. She gets anxious about upcoming events that are either exciting or scary. Please do not discuss any of this with Bernie or talk about it “over” her in the room as if she’s not there.  

The tracks from the most recent Mraz album provide a perfect framework to explain our situation more in depth.  I will try to provide the right amount of history and background for those of you just getting to know us. Thanks for reading along.  And if it’s just a little too Mrazzy for you, that’s just too bad. You can skip to the parts in italics, but you might just miss how it all comes together in the end.  

 “Quiet”

It’s ironic that the perfect bridge back into blogging about Bernie is none other than Jason Mraz and my most recent attendance at his show in Detroit.  Maybe you remember the movie “Muriel’s Wedding” where the main character confesses: “My life is an ABBA song!” In my case, the musician of interest is again Mr. Mraz.  And it’s incredibly coincidental that my most recent concert-going experience and his newest album are precisely metaphoric of life with Bernie, where we are headed next, and an important lesson for us all to keep in mind (video at the end).

No news over the past couple of years is really good news in our case! Bernie ended her 4 years of preschool. In addition to her glasses, the biggest news is that Bernie started kindergarten this fall.  Jen’s (my Jason Mraz concert going pal) daughter Hattie Jo is also in Bernie’s class of 18 kids.  It’s been so wonderful to see them be part of the same educational experience as their other family members at the school (Hattie’s cousins also attend Woodland).  It’s great for them to have each other as well as many other meaningful relationships with their typical peers. When reviewing her evaluations with the team this fall, one of the women involved in the evaluation process professed, “She seems like something of a celebrity around here! One little boy in particular announces her arrival to school each day.” Would we expect anything different? She’s pretty famous, at least in our minds. Here are a few pictures of them as tots and at school this year.

"Hello, You Beautiful Thing"

“Long Drive”

In my last blog entry, I posted about the fabulous and meaningful time I had at the concert in Detroit on Jason Mraz’s  tour promoting the “Love” album.  You may enjoy revisiting it here. This most recent show, a culmination of Jason’s work with a very talented group of women called “Raining Jane, ” took a different twist as it was a more acoustic and relaxed concert at the Fox Theater in the heart of Detroit.  The album title of their work together: “Yes!” The album itself tells such a great story connecting the concept falling in love and its associated passion that then presses on to celebrate the beauty and deeper reward of staying in love and getting over the challenges. In my opinion, it’s intensely underplayed on the airwaves. Drive another 500 miles to see another show? Absolutely YES!

“How long do you think she will be in the hospital?” I wish there were clear answers on this.  The last time we knowingly admitted ourselves for heart surgery, staff told us we could expect to be in the hospital 10 days if all went according to the typical course of recovery. Bernie was in the hospital for 140 days.  However, this time, Bernie is not a 10-pound sick baby.  She is a strong, willful, and active 7 year old. We hope things will be different, but are preparing for months away from home, living at the Ronald McDonald House if we can get in. If everything goes perfectly, we could be home as early as Memorial Day weekend. We will follow Bernie’s lead. As the song states, “As long as I’m with you, we can take the long way.”

I continue to volunteer at Mott Children’s Hospital in Ann Arbor in a portion of my “free” time.  For the past 5 years, I have driven down monthly (7 hours, 500 miles roundtrip) to attend meetings and build the Patient and Family Centered Care program within the Congenital Heart Center.  I have helped design walls, weigh in on procedures, participate in administrative rhetoric, vocalize the needs of the center for patients and families, and co-chair a team of approximately 30 physicians, nurses, and staff from all disciplines to better ensure that the delivery of services dignifies the core values of patient and family centered care.  I am a true superfan of the pediatric cardiology and cardiac surgery programs. My connection to the program is important to me and to Bernie, but my reasons maintaining this role may not be what you think.  

“3 Things”

So this time we weren’t holding back.  Jen, Barb, Bonnie, and I bought our tickets during the fan presale and we went big.  Front row, Baby. Somewhat by accident in a serendipitous “Oops- I-doubled-your-budget-ticket-purchase” we wanted to be as close as possible.  It was a bit of a sticker shock, but it could not be disputed that it was money well spent.  Who cares if my decision to go back to work this fall was based upon my Jason Mraz habit?  If we were going big, I was going to pull out all the stops. There would be 3 things to set us apart from the typical fan: T-shirts for all, photo heads of the ladies in our group and Jason, as well as props and signage. Obnoxious? Probably, but no great love deserves to go unrecognized. And when it involves a public figure, well one has to be ready to knock it out of the park.

As this song mentions, “There are 3 things I do when my life falls apart”. 

1) Cry my eyes out

2) Close my eyes and be thankful, gathering strength from sorrow, be glad to be alive 

3) Pause, take a breath and bow, and let the chapter end.  Try again.  

At Bernie’s darkest hour, in July of 2008, this was exactly what I did and in the process, made a deal with the big guy upstairs.  I’ve not necessarily been very public about the events of that night of Sunday, July 27, 2008.  In short, in the darkest of nights, I hit rock bottom.  Bernie was barely staying alive. She could not even be touched without experiencing cardiac arrest.  I asked God to define our path more clearly. In short, through streams of tears and the loudest crying sobs since I remember as a child, I told God that if she had to go back to him, then take her.  I wasn’t sure how to fight any longer. It had been 9 months in and out of 3 hospitals across the state. I also told him aloud in that dark and lonely Ronald McDonald House room that if she were to live, I would serve however I was called. I believe in a balanced deal.

The very next morning, I woke up and went back to Bernie’s bedside and this happened:

 An invitation to service came from the Congenital Heart Center in a letter almost one year to the day of that night. My duty as a parent advisor began. 

“Love Someone”

How perfect was the “Michigan Love” t-shirt on our first Detroit show? For the “Yes!” tour, I knew exactly what t-shirt we needed to deliver to Jason: “Say Yes! To Michigan”.  And Raining Jane would get some as well. We would not only profess our love for their music with t-shirts, however.  I was determined to make this a night to remember. I made poster sized faces of Jason and my crew of ladies and duct taped them on paint stir sticks.  Profile poster faces of each of us smooching could be aligned with Jason’s face so he could witness our enthusiasm for him and his music more concisely. I printed the album covers image on patches we pinned to our own “Say Yes! To Michigan” shirts. Garden gloves, a PGA “Quiet” sign, and a trucker hat were all other props with careful thought behind them to be exhibited at the appropriate time during the show. We even sent Jason a “preview” of our excitement via Facebook.

It’s hard to know what to do with all of the t-shirts from the hospital over the years. For Congenital Heart Defect Awareness Week this past February, I decided to slice and dice my collection into a skirt.  I wore it to the awards ceremony I attended as the administrators of the Congenital Heart Center accepted the University of Michigan Health System “Program of the Year” award.  A big deal!  The skirt was a hit and clearly just one small example of the enthusiasm many have for the excellence exhibited by the army of people who heal kids with broken hearts there. If any group of people deserve to be shown love and enthusiasm, they do.  They see families at their roughest times and often at their worst.

“Rise”

We arrived at the Fox Theater on Thursday, November 6 promptly at 7pm.  We had stopped by earlier to snag this shot with the marquis.  After some fun at the hotel, we headed out for a quick bite to eat before the show. We were excited!

We headed through the crowd to our seats.  By 7:10 or 7:15, I decided to get up and retrieve Jen and I (Barb and Bonnie were a few rows back and to the side) one more beverage before the show started. When I returned, Jen had a look of utter disbelief and sadness on her face. “You missed him,” was all she could muster at the moment.

“Missed what?” I needed clarification.

“He was out here.  I gave him the shirt.  I didn’t know what else to do.”

My heart sank. I clearly missed out. It was my own damn fault. I was a little too thirsty.

“You did what you had to do.  I am glad you got it up there.” I told her.  And I was glad she got it to him.

 “Everyone cheered when they saw the shirt. He held it up for everyone to see.”

My heart sank a little deeper.

“I am sad,” I told her. “But what else? Did you shake his hand? Hug him? Selfie? What? Tell me more. I need to know.”

“He came onstage and even asked for the “creepy heads” you made.”  I could have started crying easily.

“Well, other people brought him stuff also.  That girl over there brought him a shirt. And she actually got her picture with him.” She wasn’t trying to rub it in.  I was prying to know all the details to at least construct the memory in my head.

                Before we knew it, the show had started.  I tried to pop out of this disappointment and the only way to really do that was to get up and dance and enjoy the music.  Jen and I had to move on and enjoyed what we came all this way and paid all this money to see.

                But not for long. As if the first leg of disappointment was not enough, I felt something hit my back. I looked down.  Garbage.  Yes, someone was throwing trash at me. Talk about degrading.  I turned around to see where it came from.  Most everyone in the entire Fox Theater was sitting down. Ugh. Some woman a couple of rows back then leaned forward and gave me a talk about sitting down.  Clearly no dance party happening now.

                The people in “the pit” in front of us continued to dance, one by one starting to sit down.  The ushers were seeing to it. One girl, ironically the one who got her picture with Jason after delivering her t-shirt, was even escorted from the theater. Kind of made me glad Jen and I chose to calm it down. We did get to see the show. And of course the music was amazing.

Later in November, Bernie had her 6-month ECHO at Mott.  We showed up and made our usual rounds, saying hello to staff and giving out hugs when appropriate. We waited a while to get back to our bed space so Bernie can meet the anesthesia team (sedation doesn’t get us where we need to go anymore). I accompany her on the bed back to one of the cath lab rooms and we get the mask on her.  She goes to sleep.  

Our latest ECHO revealed a new number regarding her pressures that indicates we need to get more serious about addressing Bernie’s sub-aortic stenosis.  Essentially, what we’ve thought was falsely elevated is actually closer to the truth.  We decided the surgery needs to happen.  Bernie will be admitted to Mott on Monday, May 11.  She will have her fourth open heart surgery.  We will not be replacing her mitral valve, but will essentially be performing a “roto-rooter” job on her aortic valve to allow for better blood flow to lower the pressures in her heart.

“Out of My Hands”

I did everything I felt I could to personalize and set up for the most amazing Jason Mraz concert experiences I could possibly have. If I knew of a way to meet him, trust me, I would have tried.  I love his music and everything he stands for. I am a true superfan for life. I sang every song with complete admiration and tried to put the heartbreak and humiliation in the evening behind me.  There was only so much I could do to make it the night I wanted it to be. But this concert experience and Jason’s music had some very important lessons to reteach: The importance of living in the moment. My quest for that extra beverage prevented me from potentially experiencing one of the most awesome moments of my concert going memories. Why couldn’t I just be happy watching the pre-concert hubbub on the main floor of the theater? I wasn’t appreciating all there was right there, right then.  I thought I needed something else. It was that whole idea that “oh, just one more beverage, and it will all continue to be fabulous.” Um…what the heck did I name this blog?! Shouldn’t I already know better?!

Whose hands is it in then? You may wonder…now that you have “crossed the line” with her heart surgeon and have a personal relationship, will she still operate on Bernie? Should she still operate on Bernie? Totally fair questions and ones we have all thought through. We chose Dr. Jennifer Romano (formerly Hirsch) as our daughter’s heart surgeon first. We feel confident she is our best choice and know that the person who has such a heart history with her is the one who knows her best. In the event that emotions take the wheel at any given time and prevent a clear pattern of thought with regard to the procedure (it has happened to other surgeons in the past), Dr. Rick Ohye will also be available to step in and perform or assist with the surgery if need be.  The truth of the matter is, I am close to many people who work at the Michigan Congenital Heart Center and I consider quite a few people like family.  We are all entering into this next experience with personal connections that I believe will make her care team even stronger. I honestly believe that our personal connection with each other is what enabled Bernie’s life to be saved that Monday morning in July. It made the team dig deeper, work harder, and consider possibilities they would not have considered otherwise.  And she’s here today.

“Best Friend”

This is a lovely song for those of us who were granted only one spot for one friend who is perceived as the singularly ultimate relationship. I do love the gratitude expressed in this song for relationships and what people actually do for each other in those tight bonds of friendship, but in my world, one relationship cannot ever be everything. Sorry, Jason.  I suppose marriage is right up there, but even a spouse shouldn’t be expected to be one’s singular source of happiness and meaning.  Our humanness drives us to connect in lots of ways with lots of people.  

I pray that the slight fraction of issues that can result from having these relationships doesn’t work against us.  It’s similar to when a person claims “a best friend”.  I strongly dislike that term. I even discourage my kids from using that phrase.  Why? It’s exclusive.  It suggests that no one else can get in or get as close and nor should they really try because it’s already been determined that there is just one person who can know and love you best as a friend.  My answer to that?  Have close friends and as many as you want.  Friendship should not be competitive.  It’s cooperative between two people.  You can have as many close friends as you can handle in different, concentric circles and for different reasons.  Every person who enters your life has some significance and it’s up to you to figure out which circle fits your relationship the best. 

This goes for the care team.  There will not be one person who is solely responsible for fixing Bernie’s heart or seeing to her recovery.  This is very much a team sport. No assumptions can be made that one doctor, one nurse, or one family member will have ultimate significance. But as we all have roles, we all will also have a responsibility to see that Bernie gets what she needs when she needs it and our communication as a team will define her recovery.  There will be no “best friends”, but a close team who will effectively communicate to maintain the highest levels of dignity and respect.

 “Back to Earth”

This song really relays the importance of grounding oneself when life gives you the business.  Here are the first couple of verses:

Whenever my head starts to hurt
Before it goes from bad to feeling worse
I turn off my phone
I get down low
And put my hands in the dirt

I try to stop the world from moving so fast
Try to get a grip on where I'm at
AND simplify
This dizzy life
And put my feet in the grass

Grounding will be important for me and our immediate family in the next few weeks.  I know the stress of all of this feels just wretched. It’s intense. It’s as though I am preparing for combat.  I will be packing up, leaving home, and getting ready to once again fight this disease so many thousands of kids each year are born with.  I am trying to work out, eat well, get massages, and organize my house fanatically as one might when they are pregnant and nesting. I am trying to soak up all those little moments of kids coloring at the dining room table, running around playing circus in the yard, and laughing together about farts. Sometimes I wonder: What if she doesn’t come home? Because it does happen. I spent too much time there and saw too much the last time not to know this.  Bernie herself was as close as one can get to parting ways with this world.  I need to look at what I have in front of me today and be happy.  Celebrate every second. I need to face the coming weeks with strength.  And pray for the best hoping God has an extended lending period in mind for Bernie.

“Shine”

After the show, our group headed over to The Old Shillelagh in Detroit. It was incredibly clear where we had been.  We started talking to some people at the end of the bar who were also at the concert.  They told us their entire family of about 70 people went to see the show.  How curious! It turns out that they were family of Christina Carano, the woman currently dating Jason, who happens to be from Berkley/Royal Oak area but lives in San Diego now.  They told us how their grandmother who lives by our horse camp (apparently somewhere in her late 80s or even 90s) even came to the sound check that afternoon and had her picture taken with Jason.  Talk about an evening to meet the family! Clearly they could tell Jason has superfans!

The big kids asked how the concert was the next night I was home.  I told them the story.  Izzy even said, “Mom, that’s so sad! You worked so hard on all of that.” From that was born their own Jason Mraz (Sadie is Jason) performance-with Izzy as Mona(right) and Lucy as Chaska (left) from Raining Jane-which made me laugh so hard. Enjoy!

Although we are faced with negative experiences and adversity, I love the way the human spirit consistently finds ways to shine the right kind of light through to make better meaning of relationships and point us in a forward and positive direction. It’s not always the way we think it should be, but if we wait long enough we usually see the reasons and importance for things happening to us the way they do. Jason Mraz’s music does that for me and I am so grateful to him for his work.  What a gift. Honestly, Jason if you ever in a million years take the time to read this, thank you so much from the bottom of my heart. 

My gifts from you all have come in many forms over the years as being part of Bernie’s care community.  As this next leg of our journey commences, I reflect back on all of the light you sent our way seven years ago and consistently in our daily lives.  I think we had meals delivered to the house for the better part of a year, endless messages, prayers, and comments on our care page (carepages.com, cp: BernieCarsonSmith) and countless kindhearted acts of love directed at our family. If you never knew us during that time, it was truly amazing.  It’s just another example of how Bernie enables us to see such good in the world.  Bernie has given us our own rose colored glasses in a sense. It’s like she passes them out to everyone who gets to know her.  Oh, except for all of you at Mott who are about to poke her. I apologize in advance if she even tries to hit you. Please know that her light really does shine brightly as evidenced in this video encapsulating her year in kindergarten and reminding us of the importance of living in the moment!** And of course this Jason Mraz song fills the bill most perfectly.

“You Can Rely on Me”

Being a superfan of anything doesn’t make you better than anyone else or make you more appreciative than any other fan.  It doesn’t mean you get better treatment. It just makes you more vulnerable.  But you are willing to be press on because you realize the amazing things that happen when you show love to others without letting the other less important stuff get in the way. You soak up the glory and take the pain a little more publicly and maybe more personally than you otherwise might.  Just like being Mraz superfan did not protect me from some heartbreak and humiliation at the concert, being a superfan of the CHC does not protect me or our family from the inherent risks and difficult path that accompany pediatric cardiac surgery.  It’s important for me to recognize the struggles and celebrations that go along with all of this as a way for you to stay informed and for me to process all that is happening.  It grounds me. You can rely on me to update our care page (with a link to this blog) so check it at any time and know that if you have supportive messages, it is always worth your time to write them down. Your words of encouragement and acts of love and kindness are always appreciated way more than you may think.  

Our door at the hospital will always be open unless otherwise noted on this blog.  If you’d like to send Bernie a letter or care envelope/package our address will be: 

Bernice Carson Smith (patient)

Michigan Congenital Heart Center

1540 E Hospital Dr

Ann Arbor, MI 48109

 Thanks for the love!!

**There are a million other edits I would make to this if I knew how to use my new video software better.  You will get the idea...