The Ghost of Christmases Past lingers near my doorway; it hovers, ever-present, a whisper of sharp memory away. It carries with it the stench and heaviness of unmet expectations and disappointed dreams.
Nik’s very first Christmas —in a NICU isolette, attached to tubes and wires, needing a ventilator to help him breathe. Even the hospital Santa gasped when he saw Nik; “He’s so incredibly small,” he said, “Smaller than any doll I’ve ever seen.” It was a strange and oddly joyous Christmas for us, though; Nik was alive against so many odds. We celebrated the miracle that had been visited upon our family.
Nik’s first Christmas at home —with all the oxygen tanks and tubing, the feeding pump and medicines. The monitors and alarms. Everything felt so surreal that year. All I could do was watch my fragile little boy sleeping near the Christmas tree and pray to God that the worst of his ordeal was over. Having just spent Thanksgiving and his first birthday in the hospital undergoing life-saving abdominal surgery, we were again relieved; but the glow of the miracle seemed a bit dimmer that year.
The next year —our first Christmas in our new home —back in my hometown of Dover, Delaware. It felt less surreal but still “not quite right.” Nik had managed to shake off the need for supplemental oxygen mere weeks before we moved but he still was very vulnerable. Though we were able to have a small party to celebrate Nik’s second birthday, we spent most of that first holiday season isolated from all but family and the closest of friends. Nik couldn’t yet sit up and was not yet eating by mouth. It felt like a lonely and uncertain time for all of us. We didn’t know what the future could possibly hold for any of us. All we knew was that it didn’t look at all the way either of us had imagined.
That year, we became acquainted with the local fire company tradition of visiting neighborhoods the week before Christmas. The night they came driving up our sleepy little street —sirens blaring and lights flashing as Santa waved and “ho, ho, ho’d” from the cherry picker basket on the ladder truck —I wept. It was shortly after dinner time but Nik was already asleep; the endeavors of his vigorous schedule of home therapies exhausted his delicately balanced system back then.
That year, we didn’t even bother wrapping Nik’s gifts —he wouldn’t touch the paper. On Christmas morning, he sat in his exer-saucer playing with a brightly colored bow —still oblivious to the enormous tree directly in front of him. That was the year we began to have serious concerns about his vision and hearing. It was also the year he began to have absence seizures. The miracle we had felt that first Christmas seemed so remote; like it had happened to some other family in some other life.
The Ghost of Christmas Present darts furtively in the shadows; occasionally, it looks a bit like its predecessor but, every so often, it shimmers in the bright light of day. When it does, it brings with it an aura of hope —a promise of possibility —and the inspiration to create new traditions, new dreams, and the release of expectations.
The second year the fire company came around, Nik was asleep again. This time, I did not cower in my darkened living room; I stepped outside and politely asked the firemen in the advance vehicle if they could maybe not blast the siren. “You see, sir, I have a little boy with disabilities who is inside sleeping. If you wake him, he will not go back to sleep.” My request was met with thinly veiled disdain but it was honored none the less; it felt like a small victory.
The next year —last year —the advance driver remembered me. “It’s okay,” I beamed. “He’s awake and we’d love to see Santa!” Niksdad came to join me at the end of the driveway; Nik sat astride his daddy’s shoulders bundled in his jammies and winter coat. When the fire engine came down the street —horns blaring, sirens wailing— Nik went wild with excitement. The cold made my eyes water and my throat tighten just a bit.
This year, we raced to the end of the driveway —all three of us running and smiling. Nik remembered the trucks if not Santa. As Niksdad hoisted Nik onto his shoulders, Nik became a frenzy of squeals, clapping hands and kicking legs. He was so excited I worried he’d actually hurt his daddy. He practically jumped down by himself as he and Niksdad approached the truck to see Santa. As Nik squealed and bounced, the cold night air made my eyes burn and my throat constrict. When the fire trucks drove off into the darkness Nik was distraught. I smiled.
(I’ll write more about the trip in a separate post and include some of the awesome pictures I took.)
Overall, it feels more and more as if the Ghost of Christmases Past is disappearing into the mists with each passing day. On his back he carries a sack weighted down with the burden of useless expectations.
As for the Ghost of Christmas Yet to Come, I suspect I won’t know him until after he’s been around for a while. He may look exactly like the Ghost of Christmas Present. Then again, perhaps the day will come when Nik understands about Santa Clause and Christmas trees. Perhaps he’ll even appreciate the joy of giving to others and of helping those less fortunate —be it at Christmas or any time.
The day might come —or it might not. None of that really matters, does it? After all, Christmas isn’t about Santa, or trees, or —gasp! —even trains. It’s about celebrating the goodness of humanity, the promise of hope and the wonder of miracles—the very things Nik embodies always.
So fill your heart with love and joy
And through the eyes of girls and boys
Share their wonder, live through their joy
It’s easy to do, just open your heart
The spirit will come to you
Oh and God bless us everyone
The good and the bad
The happy; the sad
Oh and God bless us everyone
Here’s to family and friends
It’s good to be here again