Archive for the ‘prematurity’ Category

Boxes of old papers and photographs, stacks of books, piles of medical records and therapy reports I need to scan and organize.  The loft in our small town home has become the black hole of all the little bits of our life for which we have no clear cut place.  The loose ends, the question marks —“Do we need to save this?  What if we need this?” 


While my husband has been in school and working every weekend our time together has been limited.  Much of that time is taken up with things like, oh, parenting Nik and dealing with his ongoing health issues; there is never any time or energy left over for tackling any but the smallest of projects around the house.


Niksdad’s recent job loss turned out to be a bit of a mixed blessing this week.  He was home and wasn’t buried in the books so we had a chance to finally tackle the loft.  It’s not finished by a long shot but the work has begun; the “heavy lifting” of moving filing cabinets, repairing a sagging book case —the things I cannot do myself while also keeping a watchful eye on Nik —are complete.  The difference is remarkable; the loft feels larger already in spite of the boxes still stacked in the middle of the room.


I can finally imagine what it will look like when we have completed the project.  More to the point, I can already feel the sense of ease which permeates the space.  Where we once felt squeezed into our little corners of the room —where our desks sit tucked into opposite corners —already it seems more tranquil, more comfortable.  We both wonder why it took us so long to make this space —where we spend so much waking time— our own.  I say it was the vagaries of time and our limited energy supply but I think, in my heart, it goes deeper.




Nik’s recent bout of gastrointestinal illness has been very disturbing; not only has it gone on longer than any other virus he’s ever had, its intensity is unnerving when the waves wash over him.  He is unable to communicate the nature of the pain with more than screams and howls as he doubles over or as he shrieks and kicks his legs to seek some relief.  He clasps his long fingered hands together over and over asking us to help him, to ease his pain.  To make it stop.  We feel helpless to do more than hold him and croon soothing words as we rub his belly or his head, to clean up the aftermath of his body’s release.


This latest development, the hardening of his belly as his too slender body braces itself for the impending pain and uncontrollable outcome, frightens me.  It seems to last for hours and I am gripped with a fear that we are missing something that could mean the difference between life and death.  The recent loss of beautiful Evan sits heavily on my heart as I struggle with my desire to call his mother, Vicki, for advice and my unwillingness to ask her to relive that horrible pain.  I cannot; it would be too cruel.


My husband, the nurse, is quick to assure me that Nik’s bowel sounds are good and his belly does soften some after he’s had a bout of diarrhea —though not nearly back to “normal” enough to ease my fears.  I return to another memory packed away in my own mental loft —a place where there is not and never will be a neat, tidy, compartmentalized storage system for all the hurts and memories of watching my son struggle through so much of his early life.


The discovery of Nik’s intestinal malrotation was unexpected; he’d been showing many of the same symptoms that he has over the past two weeks and he had normal bowel sounds then, too.  Then, he was considered a “very lucky little boy”; the doctors discovered a partial volvulus —an obstruction —which they said was “a time bomb waiting to go off.”


I want to assume there is no such time bomb awaiting us now but the memories of all those times we thought we might lose Nik have built themselves up into a thick, smooth scar upon which I worry —much the same way others might rub a stone or rosary beads —each time Nik’s health takes an unexpected turn.  The history is too strong and the memories run too deep. 



I want to shed the burden but I seem unable to.  There are times it is the thing which keeps me pressing forward for answers on Nik’s behalf.  I fear the complacency.




I sit at my desk, still wedged into the corner but less crowded now.  The room is the same yet it feels different.  Attitude?  Belief?  Perception?  I am uncertain what makes the difference as I begin to make my way through the boxes of old hospital bills and NICU discharge reports.  “What if I need this?  What if Nik needs me to have this?”


I examine the pages, searching for clues —answers someone may have overlooked.  On those same pages, I see hope; for each date racked up on that enormously large hospital bill, it was another day my son lived.  Another day of getting stronger, healthier —closer to coming home.


I realize the answers I seek are not to be found on those pages.  Still, I am unable to let go.

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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.

Trying to block out the sounds of merriment outside, I sat looking at the Christmas tree my son did not even acknowledge; the gaily colored lights twinkling in the darkness of the living room did little to cheer me. I was weighted down by my anxiety.

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.

Our trip to ride the Santa Clause Express this year held little expectation of more than a pleasant ride through the Red Clay Valley and the promise of a chocolate lollipop. Though Nik was excited to see Santa last year —mostly to clap hands with him as he did with anyone he met— his response this year was tepid at best. I think the families around us were surprised at Nik’s subdued response; even Santa seemed a little puzzled until I explained that Nik has some delays and doesn’t always react the way other kids do. Santa seemed to understand and was willing to take some extra time with Nik so we could, possibly, get a good picture. Sort of silly, isn’t it? I mean, those pictures are really for us parents.

(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

(The Magic of Christmas Day by Celine Dion)

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