Thoughts on anxiety, sorrow, and red hair

How often do your worst nightmares come true?

I asked my husband this question today as we were leaving our doctor’s appointment and running errands. We had come back to the discussion of what to do if James dies soon after birth. Some mothers have told me to plan for his life, not his death, to worry about the funeral when it comes to it. I can’t imagine struggling to make a plan for what to do should he die just after he is born. I am too fragile in the postpartum period even under normal circumstances. It is something that I would like to have thought of in advance, no matter how pessimistic it feels.

Since I was 18, I’ve suffered anxiety and occasional panic attacks. I learned to control them mostly through breathing, distraction techniques, and other non-medication oriented approaches. When I had children, the anxiety was bad again for the first 2 years of their lives, but it has slowly, slowly receded.

I’ve always been told (and told myself) that worrying doesn’t change tomorrow, but it does ruin today. Worrying about my children didn’t change one bit of our story, as it turns out. That advice to “not worry” was sage. I can control nothing. I wish I had been able to take that advice. I wish that I could take it now.

It’s funny. Early in pregnancy, I remember thinking briefly about all the things that can go wrong – miscarriage, stillbirth, complications with labor, and on and on. Then I would mentally shake myself, laugh at my worrywart tendencies, and remind myself that the vast majority of pregnancies are totally uneventful and that nothing seriously bad would happen with my pregnancy or my baby.

Turns out, I was completely wrong.

I feel like the world has cracked open, and I have seen its great secret – the heart of all truth. We are all just inches away from some huge and devastating loss. The world is filled with deep sorrow, and many of us skate by on the thin ice above it, never falling through. I have fallen through into that great well of sadness, and many others are here with me.

The cleaning service I used 2 weeks ago – the owner lost his 2 year old son to a degenerative disease that I’d never heard of (Walker Warburg syndrome). The nurse on our PACT team, her son was born with hypoplastic left heart syndrome and hydrocephalus. He lived for a few days. My nurse at MAHEC – her son suffers cystic fibrosis and will need a lung transplant and have a drastically shortened life span.

The stories are all around us and yet, so rarely do we hear them. Maybe we fail to listen, to ask, to see the veiled sorrow in the eyes of others. Or maybe we’re scared to know – because infant and child death is such a terrible and tragic subject.

Last night, I made myself go out to dinner with friends. I needed to try to relax and briefly reset myself. As I waited in front of the restaurant, 2 nice matronly women with grown families of their own were asking me about my pregnancy. They were so excited for me – asking when the baby was due? Was it my first? Did I know the sex? Wasn’t I excited? I finally blurted out that he was very sick, and he might not live long after birth. There was immediate, uncomfortable silence, some muttered, “I’m sorries.” I felt so awkward about everything that I turned the conversation to lighter matters. No one knew what to say. No one really ever knows what to say.

His ultrasound and non-stress test today were excellent. He continues to maintain, despite not gaining weight. He has a great deal of hair that we could see waving around on the ultrasound. For some reason, this detail makes my heart hurt the most. I can’t explain why. Maybe because it makes him more MY baby, more a little human being, less of a mystery. I wept in the car after the ultrasound appointment over those little waving hairs. I imagine that they will be red, like his oldest sister’s hair was when she was born.

I don’t know how I will let go of my baby when the time comes.