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.
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
