Be Not Afraid

If you pass through raging waters in the sea, you shall not drown
If you walk amid the burning flames, you shall not be harmed
If you stand before the power of hell and death is at your side, know that
I am with you through it all

Before Tom and I first became pregnant, we talked a lot about having a baby. We talked about the money. We talked about who would care for the child while we worked. We talked about how wonderful it would be to become parents. What we never talked about was what we would do if the worst thing happened. It never occurred to us. I did hear about bad things happening – in pregnancy or life – but not to us. When your pregnancy is going along swimmingly, you have this blissful ignorance that you’re beyond the reach of grief and tragedy. You have to remember, this was before the internet. Anything we needed to know about pregnancy was only available in books or by asking friends, family and physicians. 

When our first child, Andrew, was born severely developmentally disabled, I remembered thinking: “This is a nightmare. I’m living every parent’s nightmare.” (For those who haven't known me very long, you can read Andrew’s story here. If you want to see photos of Andrew through the years, you can watch this video.) When I look back on that time, 32 years ago, I was so young and so naive. I had so little life experience to put this tragedy in perspective.  Honestly, I’m not even sure I could have put it in perspective. How do you wrap your head around the fact that a perfectly normal pregnancy resulted in a child who was profoundly disabled? 

(Interesting side note: I was recently told by a doctor, that if that pregnancy had happened today, physicians likely would have seen, via ultrasound, the Vesa Previa that caused Andrew’s problems. In other words, they could have prevented everything that went wrong. But if that happened, I’m not sure we would have had our second son Dan and that seems unfathomable today.)

I remember being sad…and sometimes angry. I will admit, I got REALLY angry. I remember going to Mayfair Mall and seeing young women, a LOT younger than me, with healthy children. I remember asking God: “Why do THEY get to be parents when they are still children themselves?” But you quickly realize that anger toward something unfixable is wasted energy. In any case, along with the grief that came from knowing that our child was so horribly disabled, came a strange sense of peace. Perhaps it was simply resignation. 

Yes, I was sad and angry, but I was never afraid. I’m not sure why. One reason might be because I was young and pretty unaware. I had no idea the depth of this calamity. I guess I wasn’t afraid because family surrounded us and enveloped us in love. I wasn’t afraid because the staff at St. Joe’s Hospital did everything to walk us through the nightmare in a gentle, caring way. I also wasn’t afraid because I had Tom. I wasn’t alone. We were a team and we were inseparable. 

As we approach our 35^thwedding anniversary, I think back to momentous events in our life and realize that I made it through the bad parts because I was the luckiest girl in the world. I made it through because my husband became my rock when I was a pile of mush. When I was weak, he was strong. THAT’S how I made it through. That is why today, when I go to weddings and the vows are being recited, I always wish I could shout out: “PAY ATTENTION TO THE SICKNESS PART! SHIT HAPPENS. MAKE SURE YOU’RE THERE FOR EACH OTHER DURING THE WORST.” Of course, I never do. But I think it and I wish and pray that the couple will love each other no matter what. 

Nevertheless, Andrew is forever a part of our family’s story. I know that religious people have told us: “God chose you to be Andrew’s parents.” I don’t know if that’s really true. (Can you tell I’m having a bit of a faith crisis lately?) I feel like Andrew did more for us than we did for him. Perhaps I appreciated parenthood a lot more because of him. Perhaps I understood a little more about the fragility of life because of him. Perhaps because of the fact that, in his quiet, gentle way, he touched so many lives, I received a broader understanding of how all of our lives are intertwined. For that, I’m very, very grateful. 

Now that I’ve matured, I’ve unfortunately seen tragedies. I’ve known parents who have lost their kids to accidents or suicide. I’ve seen families live through the horror of cancer and other illnesses. Who’s to say which tragedy is the worst? Ours was just one story among many.

32 years ago, on November 18, 1986, our first child was born. It was a tragedy. But tucked inside that tragedy was beauty that is born out of grief and love. Happy birthday, Andrew. We love you.