I was lucky enough to speak at a discussion series for Hand to Hold, a support and mentoring program for parents of premature babies. This was my very first book signing, so I was very anxious to help the moms and dads in attendance and also get feedback, because I think I am spreading the right message, but a lot of my conversations happen in my head, so you just never know.
The topic I selected was the mind-body connection. I spoke about post-traumatic stress disorder, depression, stress, and anxiety – the 4 horsemen of prematurity. Knowing the statistics, it did not surprise me the number of heads that were nodding or the tears sliding down cheeks that were by now so used to the steady flow that there was no thought to brushing them away.
I was most touched by the questions at the end. The stories, all different but also the same. A grandmother was there for her daughter. Her grand baby in the NICU now 6 months and still on a ventilator. Her daughter was having difficulty coping with the constant requests for updates.When would he get off the ventilator? When was he coming home? A barrage of questions that she didn’t even dare to whisper to herself. And with each well intentioned request, the wound deepened. Did I have some advice for her daughter?
You bet I did – tell them to stop asking questions. Yes, people want to know, but they also need to know that each time they ask, each time they force you to consider the unthinkable, it only makes things worse. If there was good news they would already know, because it would be sung from the highest mountain top and Facebook and Twitter streams with would be twinkling like Christmas lights. Asking how and when and why is not helpful. It forces parents with premature babies to carry an ever heavier load when we are barely treading water as it is.
People who are not intimately aware of the prematurity have no idea what to say. They don’t know that our days and nights in the NICU, and often for many years afterwards, are filled with unthinkable thoughts. So be blunt. Tell your friends that the only questions to ask are How can I help? and What can I do? It’s not being rude, it’s being honest. Take it from me, it will ease your load just a little bit.