Come gather 'round people
Wherever you roam
And admit that the waters
Around you have grown
And accept it that soon
You'll be drenched to the bone.
If your time to you
Is worth savin'
Then you better start swimmin'
Or you'll sink like a stone
For the times they are a-changin'.
~ Bob Dylan
Once Will was born, the times, for me, as a person and as a mother, had indeed changed. Constantly. Unpredictably. Markedly. Moments marched on, marking the days, weeks, months of Will’s stay in the NICU. Thanksgiving, Christmas, New Years came, were acknowledged, went. We rang in the advent of 2002 with apple juice along with other parents and hospital personnel in quiet celebration so as not to wake our sleeping darlings.
But... the more things stayed the same, the more they changed in Will’s world. And he knew nothing else but change.
Some days, there was no news -- which was always good news.
Some days, there was so-so news, with information about a necessary procedure or blip on the proverbial radar screen.
Some days, there was great news about weight gain or a clear chest X-ray or decrease in medication.
I was never able to completely and solidly rest in any of this information, for it could turn on a dime. While I was never complacent, I was never completely comfortable either. Coming face to face with the mortality of one’s child has an unsettling and lingering effect on a parent. That other shoe hung perilously on the tips of my toes, waiting to drop at any moment.
Still does.
Every night, I check on Will as he sleeps, even to this day, holding my hand lightly on his back to feel for the gentle rise and fall of his breathing. And any change in his demeanor or good health -- fever, runny nose, cough-- instantly makes me clench inside. For while it’s usually symptomatic of normal, regular childhood stuff, there’s always a chance that it’s a precursor to something more serious. A recent upset tummy sent us racing to the Emergency Room, as that is a first sign of a shunt malfunction. False alarm -- just a stomach bug. Who knew?
It’s still hard to determine what’s a regular kid issue or what’s a uniquely (and more serious) Will issue -- I sometimes feel like the quarterback in the game of Will’s life, often making a play change based on what I see on the field while the clock ticks down.
Normal is indeed all relative.
While my life as the mother of a NICU baby was the product of One Big-Ass Change, it was the little things that stealthily made their way into my life fabric -- things I never even considered before...
...I became a devotee of hand cream (L’Occitane Shea Butter -- nothing better), as the three-minute washings with Super Hospital Soap and the Nifty Scrub Brush required before entering Will’s room wrecked havoc on my skin. And, as a Woman of a Certain Age, it's become a necessity.
...I took to wearing button-down shirts, in the event that it would be a day where Will and I could have some Kangaroo time and he could snuggle on my chest. Like the Girl Scouts say -- always be prepared...
...I knew what days would be good ones to eat in the cafeteria, having become all too familiar with the menu rotation (stay away from the Cream of Broccoli soup...)
My husband and I became amateur, more-than-slightly overinvested neonatologists. Infections, breathing issues, low heart rate, head taps -- all prime topics of conversation. As time progressed, we were able to analyze the numbers and actions on the monitor that kept track of Will’s most vital signs. We knew when an IV tube was not working properly, and how to re-set the timer that regulated the flow of medicine. We read X-rays, assessed blood test results, and evaluated medicinal reports. Much of this we picked up by osmosis, simply by being attuned to our environment and asking questions of absolutely everyone. But we also acquired information on our own (Google is my life-long friend) so that we could not only understand what was happening to our child, but also so we could be the best possible advocates for him.
My world had shrunk to a microcosm of its former self. Everything rose, set, ebbed and flowed within that bunker tucked inside the hospital. Our neighbors, comrades, supporters were the parents of Will’s roommates; we got to know one another through the experiences of our children. We spoke the same language, felt the same emotions, understood the same thoughts. Not that the other people in our lives weren't important -- because they were. They helped to keep us grounded. But these bonds -- the ones formed over isolettes or in the breast pumping room -- were those that were created from a common, shared experience. We were all walking the same mile in the same shoes, albeit perhaps on different routes.
Our prayers soon expanded to include the needs of Will’s friends and their parents. It was actually a liberating experience when we were able to focus on the needs of others, in addition to our own. Progress forward.
But for every little milestone we celebrated, every blessing we received, every success we cheered, there was always something to remind us to never take anything for granted. Out of the blue, right after the turn of the year, we received a very sobering reminder of just how precious and delicate life can be, as one of Will’s little roommates passed away. He too had experienced so many of the ups and downs that Will had, due to his own precarious health situation.
So many mixed emotions accompany such a tragedy -- heartache for the family; sobering realization that there but for the grace of God go I; guilt that my child is surviving. I wish I could say that this was a unique situation, an isolated incident -- but it wasn’t. And it sucks. Big time. Parents should never outlive their children. My little brush with Will’s mortality was as much of a taste of that as I ever want.
But damned if I still don’t remember every bitter nuance of what it does taste like.
Yuck.
Ptooey.
Never underestimate a mother’s sense memory. Even a hypothetical one.
And that is a permanent change. That I can never shake. No matter how hard I try.
Motherhood has a very humanizing effect. Everything gets reduced to essentials.
~Meryl Streep
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