On cool, crisp Saturday morning, I layered up the monkeys and we headed for the zoo for a charity walk benefiting the NICU where the monkeys spent their first 9 weeks. Two of my closest friends and their bubbas rounded out our team. As it turns out, herding 5 children, ages 6, 4, 3, 2, and 2 is no easy task so we unfortunately all got separated very quickly. I didn't see glimpses of those, my other favorite children until an hour later or so, playing on a hillside, past the throngs of NICU graduates and their families. While the monkeys are just getting excited about seeing animals, they were far more interested in the freedom to wander freely and use the "big kid slide." I thought of their first days...intubated, hooked to wires, on IVs.... as I watched their red little noses crinkle with laughter and was grateful.
The walk was short, as the ceremony in the center gardens was long. The couple who created the walk 6 years ago spoke, and while their daughter had only spent a few days there, they acknowledge the "club" to which NICU families belong. They referred to it as an "elite club," one to which no one wishes to belong. It truly is one that cannot be understood until it's been lived through. One develops a new vocabulary and realizes a new reality; words like "tachy" and "episode" work their way into your everyday vernacular, you find yourself using CCs to describe how much breast milk you've pumped, commenting on the large size of the 4 pound baby in the next isolette, and celebrating when your child is big enough to fit into preemie sized onesies.
My monkeys and I sported t-shirts with their birth weights and age (29 weeks) so others could see just how far they've come. They're both 10 times their birth weights now, and on their feet. Other family teams had shirts with the ages and weights of their angel babies, the term used to refer to those babies who didn't get to go home with their families. One family team had triplets, and had shirts honoring the birth dates and weights of all 3 babies, and only 2 survived. The surviving two were 5 years old, and I hugged my littles close, so grateful for what I have. I thought of the 15 year old mother I met while there, whose tiny baby lived to be 6 months old, who had to make a choice to turn off the machines, a choice no mother should have to make, especially one who is still a child herself. I thought of my friends across from us, whose two little girls had to say goodbye to their sweet brother before they were even born. I thought of my friends I had pre-NICU, who experienced a traumatic birth which tried to kill both mother and son, and stood in awe of how their family faces the challenges they now face with a child with special needs. I hugged my babies even tighter. I looked around and saw the children on crutches, and in wheelchairs, and with other lasting effects of either their prematurity, their traumatic births, or the birth defects that landed them in the NICU and wept, and the words "there but for the grace of God go I" played on repeat in my head as I looked around at the tear filled eyes of the adults around me, and into the giggling faces of the oblivious children tearing up the beautifully maintained gardens.
Now that the overwhelming relief of having had my babies survive has subsided, I'm now faced with a new set of unanticipated anxieties. I watch my daughter struggle to stay focused, and worry that she's exhibiting symptoms of ADD. I try to comfort as she cries and cries when she gets over tired or over stimulated and worry about sensory integration issues. I note my son's lack of spoken words, and watch him flap his arms when excited, and worry about autism. I watch his ankles turn inward and worry that that diagnosis of cerebral palsy may have some weight after all.
There are fates so much worse than that which my family has faced. I worry that I am wishing away their childhood as I wait for the next milestone that will reassure me that they will be okay.
