Every year I write something for my oldest son’s birthday. Today, November 18th, Andrew would have been 34 years old. Trust me when I say that I’ve written everything possible. I’ve written this and this and this and you can watch this. And my beautiful daughter has written these.
This year, I want to talk about the limits of medicine and how, despite our many advances in healthcare and obstetrics, sh*t still happens. Somehow, in this year of a major worldwide healthcare crisis, this seems relevant.
A couple weeks before Andrew was born, a friend’s sister had a stillbirth. I remember thinking she must have done something wrong or have had less than great medical care. Neither was true. I was 26 years old and hadn’t yet experienced a lifetime of understanding that, sometimes, the worst can happen to the best people – DESPITE doing everything right and getting the best care possible.
If you know Andrew’s story, you know that my pregnancy was “unremarkable.” I was very healthy and so was he. In 1986, you didn’t have ultrasounds unless you had a high-risk pregnancy, which I didn’t. (I will tell you that had they done an ultrasound before Andrew was born, they might have seen the “vesa previa” that ruptured when labor started, thereby saving his life. But it truly wasn’t called for.)
Still, we can’t rewrite history. We can only learn from it. What I know, 34 years later, is that being Andrew’s mom was something that changed me and my family forever. Even though they weren’t born, it changed my younger children. To this day, they have a more mature and compassionate view of life than some of their peers. I also know that I wouldn’t trade the lessons we learned or the love and grief that we experienced for anything in the world. It’s part of our story, forever etched on our hearts.
But back to the medicine. I remember after Andrew was born, it seemed that some of the hospital personnel were holding their breath waiting to see if we were going to pursue a malpractice suit. After all, a baby was permanently brain damaged beyond comprehension. But Tom and I never considered it because, at that time, it wasn't preventable. When you’re in the midst of a crisis like this, you make decisions from your gut. We looked every OB/GYN and Neonatologist and NICU Nurse in the eyes and knew, beyond a shadow of doubt, that they did the best they could and wanted anything but the outcome we had. The best we could do was draw from their experiences and try to give Andrew the best life possible. That’s when the decisions got really hard. I mean gut-wrenching hard.
Looking back, there seemed to be a cloud of grace hanging over us. Family flocked to our side to lift us up and support us. Caregivers made sure to tell us how beautiful Andrew was despite how seriously brain-damaged he was. Even clergy tried their best to give us answers that we wanted to hear. (Hindsight is 20/20 and these were probably the least helpful in the long run, but they tried.)
I guess my point is to say that we are all humans – all of us – moms, dads, doctors, nurses, scientists. We only know what we know. We can be confident and informed and make choices based on lots of research. (And let me stress that this is how decisions SHOULD be made – with LOTS of research.)
But sometimes, we have very little control over situations that, for most people, are very ordinary. Sometimes, extraordinary things happen – bad things – for no damn good reason. I’m pretty sure everyone who has been through a cancer diagnosis can attest to this. You can certainly spend time asking “why me?” But you quickly learn that that does nothing. You still have to move forward. I guess if you’re a person of faith, you can say “everything happens for a reason.” I’ll tell you a secret – I don’t believe that. I don’t. I don’t believe God gives people death or torture or cancer or brain-damaged babies for a “reason.” I’m not letting him off the hook. I’m just saying it’s not that simple.
We Americans like to think we have control over everything in our lives. There’s nothing more humbling and eye-opening than having that control ripped away. We recently got a puppy and any control we had over our empty nest was ceded to this adorable, furry, sometimes infuriating little creature. At first, I fought it and decided I’d train the dog to be PERFECT. I quickly realized that wasn’t going to happen. Once I relaxed and tried to “make the best of the mess,” things got a little better.
Of course, I’m not comparing parenting a severely developmentally disabled child to “parenting” a puppy, but the unexpected chaos and life disruption is not without its similarities. Suffice it to say that life throws you curveballs, some of which are beyond unexpected. In a year in which everything is chaos and disruption and normality has been ripped away, I’m trying to use the lessons that parenting Andrew taught me – patience, perseverance and acceptance. For all of these lessons, I’m eternally grateful.
