Balance and Emotional Insurance Policies

So Jeff and I had the Traverse City New Year’s baby on 01-01-04. Then we had the Cinco de Mayo twins on 05-05-05. Holidays and numerical correspondence between the month, day, and even the year with the twins was the way it worked for me. While I was on hospital bedrest before Bernie was born, I would jokingly tell the nurses that I was holding out for Veteran’s Day, 11-11-07 so our new baby could follow our family’s birth pattern. So when October 3 was the day Bernie officially joined our family, that whole digit thing threw me for a loop. The math teacher in me nearly immediately thought to find a way to look at Bernie’s birthday numerically.

Not that there wasn’t A LOT to think about with all of the diagnosing that went on following her arrival, but having something in the numbers stuck with me. There was this whole bonus chromosome issue (represented by an extra line on textbook chromosome maps) to contemplate. Oh, yeah, and how the heck you figure out how and where to have your baby’s heart fixed and by whom. It was a sea of confusion at many points.

Anyone who has something of a mathematical background can tell you that the equals symbol obviously denotes equality. When you take it a bit farther in algebraic concepts, we learn that the equals sign also represents balance. That what is on one side of that equals symbol has exactly the same value as what is on the other side. This is often the challenge of many math problems at this level…to balance the equation.

Looking at Bernie’s birthday on paper in some situations looks like this: 10-03-07. Toss in an extra line as a way of representing the 3 chromosomes for Trisomy 21 and you can also write Bernie’s birthday as 10-3=7. That was it. The equals sign. Bernie’s birthday is a perfectly balanced mathematical equation. Balance. Equality. Great life lessons and values all packaged into one now happy and healthy little girl who cruises around and gets into everything.

So if life is one big, fat math problem with a need to find balance, I think we’ve got it! The concept that Bernie offers balance to our family is not necessarily profound. Very true, and lots of people have communicated this sentiment to me. It tends to be more obvious. The virtue of equality that she represents may be a little more so of a stretch for some folks to understand. Let me explain how I’ve come to see this.

Early on when friends were having babies, the big questions was: “Is it a boy or a girl?” Then after witnessing a few friends have complications with their pregnancies and deliveries, the question became, “Is the baby healthy?” After which most people affirmed “yes” and there was a big sigh of relief. We just wanted it to be “right” and not see any suffering. There’s nothing really wrong with that on some level, but these questions I now realize make statements about our values that I am not sure I want to uphold.

I have more recently made a vow to myself that I will not be overly excited for my friend’s and family’s healthy babies. I realize that probably sounds a little strange. I suppose my mind now has a clearer picture that a baby is a baby is a baby and that little person is with us to be embraced regardless of their health status. Is there gladness in having everything be smooth and seamless and uncomplicated? For sure! Can it be difficult to face health issues? Absolutely. Am I going to jump up and down with enthusiasm for someone facing heart surgery with their little person? Definitely not, I will certainly share my optimism in knowing the miracles of modern medicine first-hand. I guess I want them to know that I value their baby no matter who they are. Sometimes those overly excited exertions relating to good health can have a sinking feeling for those of us who didn’t get that “healthy” baby. The extra emphasis we place on health can have the indirect affect of devaluing our kids who came to us with obstacles before them. These little people are equal even if they have strikes against them from the start. I hope we can all share the joy of a baby just because they are, well, a baby.

What I hope evolves from this on a greater scale is that we can offer the future moms we love out there an emotional insurance policy. We have insurance policies for all of those things we hope don't happen, but we have pieces in place to offer security nonetheless. Somehow emotions never make it into these areas of assurance. I'd like to offer my personal guarantee to anyone I care about that they have an emotional insurance policy with me upon the birth of any child. My message is simple: Your babies will be perfect no matter what. They may be a different version of perfect than you imagine, but perfect all the same. I DO hope your baby is healthy!! As your friend or sister I am here to love you and your baby and support you regardless of any situation that presents itself that may or may not be what you expected. I hope this concept takes off. The unknowns surrounding the acceptance of a child who comes to us with unexpected challenges is scary and to know those who love us offer unconditional love is priceless. Those were the first people I wanted to surround myself with upon Bernie's arrival.

I found a Down syndrome awareness pendant made to represent this and put a picture in the photo gallery. Check it out. It’s from www.bejewlery.com.





One of the other ironies surrounding Bernie’s birth was that not long after realizing the reality of heart surgery, Jeff made the clear point to say that if it were possible to have a woman perform Bernie’s operation that would be optimal. Not simply because of the misconception of “a woman’s hands” being dainty and effective, but there was something about the detail mindedness of a woman that was preferable. Consequently, this simple point at one of Bernie’s cardiology appointments early on was one point on the path that directed us to Dr. Hirsch.

Those of you who have followed our story and are not my Facebook friends (I already put this out there) may be interested to hear Dr. Hirsch’s side of Bernie’s story as she recently completed her video profile for the University of Michigan website for finding a physician. Although she doesn’t mention names, I think you will clearly hear a story that sounds familiar. I always appreciate a variety of perspectives and even though you are likely not shopping for a pediatric heart surgeon, you won’t regret taking the time to hear her side of the story. It’s very special.

Photo and video editing at www.OneTrueMedia.com

Time for me to get off the stage here and tell you to enjoy Bernie’s 3rd birthday movie! Thanks for your continued love and support. Cheers to balance and equality!

Blessings,
Missy

Photo and video editing at www.OneTrueMedia.com

End Crisis Mode. Start Blog.

"Just one more..." It's a phrase we hear frequently from kids, "Mom, just one more time down the slide!" Sometimes it is said in order to remind us that things will be better as a sort of euphemism of positivity that offers a reward. "Just one more dish to wash and I can go have a cup of coffee." Or it comes in the form of encouragement we offer ourselves to get through a tough situation, "Just one more day and that it will all be over."

In most situations, the concept of "just one more" can help us take a complex task, no matter how desirable or horrifying, and break it into more manageable pieces. In my case, "just one more" was what my husband and I decided after having our first daughter, twin daughters 16 months later, and talking about having another child in less than 4 years. After a tumultuous pregnancy in many ways, Bernice Carson Smith arrived 10 weeks premature (3 pounds, 9 oz.) at 11:56 PM on October 3, 2007. She was diagnosed with a significant congenital heart defect, only a portion of another diagnosis: she had just one more chromosome.

"Just one more" took on an entirely new meaning. Down syndrome and wasn't just "Corky" from that eighties TV show. The world of congenital heart disease was new territory. These uninvited visitors had knocked on my door, invaded my most personal and private spaces, and told me they were staying for the rest of my life so I had better figure out how to live with them and find the bright side.

This was the first time I could touch her about an hour or so after she was born. I only had about 5 minutes with her as not to overstimulate her little body. She was taken away via helicopter hours later to a hospital that could better monitor her cardiac needs. In the year that was to follow the moment this picture was taken, little Bernice would take 4 urgent helicopter rides, live for 220 days in multiple hospitals far from our home, and undergo three open heart surgeries within 4 of those months. Our Northern Michigan town rallied around our family and daughter, bringing us hundreds of meals and hours of childcare for our older daughters, as well as innumerable supports during this crisis-jammed time in our lives

This was our first family photo of all six of us during our near 60 days in the NICU:

This was our first family photo taken at Christmas once Bernie was home from the hospital after her birth.

Heart surgery was the following April after contracting RSV, a respiratory virus that affects preemies.

And another heart surgery later that same month... I started making little movies of her progress since I could tell it would be a long road until we could be home sharing life as we once knew it with friends and family. She became known as "The Bern" and the campaign to "Heal the Bern" had begun. She was no longer a patient that followed the rules which made her something of a celebrity since she lived through so much. She had no idea.

Home for a few weeks. After an unexpected crash, she had a third heart surgery that July of 2008.

It was a very long recovery. We spent months and months in the hospital. Bernie faced death on quite a few occasions, both before and after her last surgery. This was the first movie I made after her third surgery.

Bernie was able to move out of the pediatric cardio-thoracic ICU in early September of 2008. She spent about 100 days there since April. This is the movie I made about how many fabulous PCTU employees it takes to get a family through the heart surgery process. It also quite triumphantly shows Bernie leaving their walls once and for all.

The six of us were back together again in September to celebrate her first birthday with 400 of our supporters, family, and friends.

Bernice endured more than 20 episodes of cardiac arrest during her stays in the hospital for heart surgery. She defied all odds even though falling through the cracks was a game she played frequently. She was on death's door and at her worst point, when she could not be touched, turned, suctioned, or cared for in the most basic of ways, there was really only one person left who thought there was another plan that could save her. That was her surgeon, Dr. Jennifer Hirsch. Her established relationship with Bernie was special and a very unique bond developed between us over so many months. We wanted her to be Bernie's godmother.

She accepted the honor. Bernie and her cousin Charlie were baptized together in October of 2008. The girls dressed up as superheroes for Halloween that year. Izzy was Super Girl, Sadie and Lucy were the Wonder Twins, and Bernie was the talented and lovely Dr. Hirsch.

The representation of the number one is often looked at as inconsequential. The purpose of this blog is to reinforce the significance of "just one more" and the positive impact of having a child with Down syndrome has on our family's daily life. One has value. One has life. One shapes and changes the attitudes of thousands for the better with her spirit, determination, and joyful presence. One transforms people's lives and forges new and beautiful relationships. One offers hope and positivity and tells us that our lives will be better because she is part of our world. She truly reminds us to always look up! Bernie, nearly 2

Here we all are just before Bernie's second birthday.

And so I document our story from today forward here to share with you the amazing journey and gift of "just one more". As Bernie now begins to take her first steps, I will take my own in writing about this privilege and gift I've been given in being Bernie and Izzy and Sadie and Lucy's mom. Thanks for following along. Missy