A Surprise Shower and A New Normal

Dave, Grace, and Bryce

This past week my team at work surprised my wife and I with a baby shower for Brent.  It's actually the third (and last!) baby shower my coworkers have done over the years for my wife and I at my workplace, the first occurring all the way back in 1999 just prior to the birth of our only daughter, Brooke.  Each baby shower has been memorable and blessed us differently and for different reasons. This particular shower helped by giving us a moment to pause and celebrate the impending arrival of our son - something that should occur naturally and normally in a pregnancy.  But this time around is different, and I'm actually grateful for it because it's creating a new reality, a life changing "new normal", that we are adjusting to more and more each day.

There is a scene in one of my favorite movies, The Matrix, where Morpheus says to Neo "I imagine that right now you're feeling a bit like Alice, tumbling down the rabbit hole".  (I've included the clip from YouTube at the end of this post)  It's a nice analogy for the way the past few months have felt since Brent's diagnosis with the whirlwind of OBGYN visits, Perinatologist visits, Cardiologist visits, Surgeon visits, hospital tours, endless hours reading and researching about his condition, and so on.  In the clip, Morpheus goes on to give Neo a choice - take the red pill and "see how deep the rabbit hold goes" or take the blue pill and essentially go back to his old life.  Well, we wouldn't have much of a movie if he took the blue pill :P

For us, our "red pill" was when we learned our baby had a rare, complex heart defect which would require multiple open heart surgeries and a lifetime of treatment, and even with that, the doctors did not know what his long term prognosis would be.  Of course we did not choose this for our son, but it had the same effect as the pill in the movie- it opened our eyes to a new world - one that was always around us, but we never noticed.  Our son's diagnosis caused us to see that congenital heart defects (CHDs) are the number one birth defect, impacting approximately 1% of all births, yet is grossly underfunded.  It helped us learn that twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet pediatric cancer research funding is five times higher than CHD funding.

At the same time, Brent's diagnosis has introduced us to a community of families and supporters that we would likely have never met otherwise.  Heart families and heart warriors (the name we give to our heart kids!) are some of the strongest, caring, and supportive people you will ever meet.  His diagnosis has given us perspective and patience we didn't have before.  Think of a time you saw a news story or something happened that made you hug your kids a little tighter, or spend a little more time with them randomly in the moment.  Now imagine something happening to you that gave you that feeling, that perspective permanently for the rest of your life...

Even though we don't have the option of choosing the blue pill like Neo did in the movie, I can't say that I would even if I could.  That would be taking us back to a life without our son.  And although we don't know how deep the rabbit hole goes or what exactly or new reality will eventually end up looking like, the baby shower reminded us that Brent's life and our new normal our things worth taking time out to celebrate.

The Matrix - The Red or Blue Pill?