What a beautiful weekend it’s been, sweet Flicker. Illuminated by copious sunlight we kayaked on the Charles River, barbecued with dear friends, walked the tree-lined Minuteman path and read on our shaded porch. A quintessential New England summer weekend that makes enduring the brutal winter months almost worth it. Kicking off this lovely weekend was a visit to the doctor on Friday afternoon, a now weekly ritual in which we get to check in with you. I will be honest, sweet Flicker, that I have left many Friday afternoon appointments in tears over the pictures that sometimes haunt me and the plans that are so difficult to acknowledge. Plans that involve consultations with the NICU and documentation for the anesthesiologists and medical codes for insurance and on and on and on. But this Friday, everything just seemed so normal. You were moving all around for us, showing off your dexterity despite the physical limitations we all know to be present. That I can now sometimes feel these movements makes it all the more surreal. Your heartbeat, as always, was fast and consistent and strong. We arranged plans for a glucose test, checked my blood pressure and weight gain and did the routine things that all pregnant women do at the end of the second trimester.
Your dad and I left that appointment and couldn’t help but ache for normal; deeply affected by the brief taste we were offered on Friday afternoon. But as soon as we left the office the weight of your prognosis cruelly entered back into our realm, bitterly reminding us that while there is very little that is normal about you, Sweet Flicker, living with you for the brief time we have together has become our new normal. We have now lived with this new normal longer than we lived thinking all was well with you, but truthfully I hardly remember those ignorant days. I sometimes wonder if I would have rather never learned of your diagnosis, enabling us to exist in a false, yet joyous, sense of security. No doubt we would be spending these next few months arranging your nursery, reading parenting books, planning baby showers, and folding your tiny sets of socks all under the false guise that the movements and heartbeat and growing belly indicate your thriving march toward an October debut.
No. I wouldn’t have wanted that. Or maybe I would. No, it would be harder. Wouldn’t it. Wouldn’t it?
While I struggle to remember the good days, I distinctly remember the days that immediately followed “incompatible with life.” Unable to piece any semblance of life together for us, sweet Flicker, I took the remainder of the week off from work to allow myself to simply sit at home and Be Sad. While those days were absolutely necessary in order to process the rawest form of my grief, I came to realize, sweet Flicker, that I had to create a life for us that was about more than just Being Sad. For my own mental health, which directly impacts yours, I needed to carve out what this new normal for us would be. So the following Monday I dipped my toe in the water by returning back to work, then back to cooking dinner, then back to church, then back to attending social functions, then back to exercising, on and on in a continuous pattern until my life to the outside world looked largely uninterrupted. You and I and your dad, of course, know better.
Every single day I question my decision to integrate so much of my old normal into our new normal, sweet Flicker, often feeling guilty that you are spending so much of your short life in meetings and on conference calls and making small talk. Maybe we should be out adventuring every day, traveling the world and documenting its beauty. Maybe we ought to be spending all of our time with your grandparents, aunts, uncles and cousins who so much want to be a part of your everyday life but are separated by great distance. Maybe we should be writing a book or spending all day in counseling or seeking out other area moms going through this or….
But let’s be real, sweet Flicker. There just isn’t any emotional capacity for “should be’s” or “ought to’s” or “they are doing, so should I’s.” For you and me and your dad right now, it’s about living among the world each day that allows us to care for you in the only way we know how. For us, that means living much of our old normal with added weight of this new normal, requiring additional routines of prayer, submission, resolve, vulnerability, exhaustion, hope, love, and the seemingly infinite range of emotions that hit us each day. I know that our new normal will look different from the others who have, are and will suffer a similar paradigm shift driven by infant loss, and that is absolutely OK. We are all in this together as compulsory members of an exclusive club that none of us want. All we can hope and pray for, sweet Flicker, is that all of us feel the abounding love that you, me and your dad feel each and every day from those who care for us so.