Archive for the ‘Christmas’ Category

The “Christmas that almost wasn’t” turned into a Christmas of delight and wonder. It was touch and go right up until Christmas morning as to whether or not we were all healthy enough to host a small Christmas dinner for my parents. Nik’s not sleeping well again; he seems to be suffering from that recurring “pain of indeterminate origin” which many want to dismiss as merely behavior. (Granted, it has diminished significantly since we stopped the Lamictal but there are some elements which remain.) My sister and her new husband were out of town on a short honeymoon, my nieces were scattered hither and yon, and with our current finances, well, it just didn’t feel like much of a celebration.

I longed for the big Christmases of my youth. Damned ghosts sometimes just don’t know when to quit, do they?

Yet, in spite of my malaise, Christmas went marching on and the presents kept coming. Here are the highlights:

The look on Nik’s face as Niksdad carried him downstairs on Christmas morning and he saw his new dump truck loaded with Mega Blocks and his Alphabet Train Station. Priceless. Nik was still sleepy and snuggly against Daddy’s shoulder until he saw the toys; he lifted his head from Daddy’s shoulder and his eyes went wide with delight. As soon as we put him down, he made a beeline for the dump truck. As I predicted the night before, it turned out to be his favorite item of the day.

* * * * *

After spending an entire day out and about with his Daddy, Nik was patient enough to wait in line for ninety minutes on Christmas Eve with his Daddy to see Santa —just for Mama! It was late, it was nearly his dinner time and he was on the verge of sensory overload. The photo isn’t the greatest but the experience was wonderful, according to Niksdad; he can’t stop bragging about how great Nik did. “Santa was blown away when Nik signed ‘Thank you’ to him!” “And Nik’s tolerance was just incredible; he didn’t fuss or fight at all!”

* * * * *

Standing in the kitchen with my mother as Nik approaches the gate and starts to reach over for his “letter machine” (Fridge Phonics). I hand it to him and take some letters off the refrigerator door; Nik brightly chirps “Buh! Guh!” My mother’s jaw drops as she looks at my hand and sees… the letters B and G. Nik recognized them and knew their sounds without any musical prompts. He now recognizes and can tell me the sounds of E, M, H, and P as well.

* * * * *

Nik noticed the Christmas tree this year —enough to walk up and touch it in all its faux pine glory! I thought, perhaps, the twinkly lights would entice him to do more but he was sufficiently unimpressed with the texture and hasn’t given it so much as a backward glance as he races past it each morning en route to his beloved new dump truck! I now know he’s fully aware of its presence —just as he is aware of the cats; he just doesn’t have any compelling interest in interacting with it.

* * * * *
Nik responding completely appropriately as he opened his gift from his Nanny and Granddaddy —all by himself. Paper shreds flying as he sang and chirped. He opened the giant picture book and actually looked at a few pages and pointed to a couple of things I asked him to find. Then he signed “Thank you” to his grandparents as they beamed with pride. They, too, remember the years he wouldn’t touch the paper or would only play with the bows.
* * * * *
Being able to share Christmas dinner in my home. We’ve all been ill and, on Christmas Eve, had actually canceled the plans to share dinner with my parents on Christmas Day. Since my sisters and their families weren’t with us this year, it felt sad and lonely. The “plague” lifted enough to assure my parents that it would be alright and we had a lovely, lovely time together. Mom brought the roast lamb and homemade gravy and I made everything else. It was a delightful meal in which Nik fed himself some mashed up baked potato and sour cream, some stuffing with Nanny’s gravy (mostly gravy with a little stuffing) and made a terrible mess everywhere. But he was happy, he was included, and no one thought twice about whether his behavior was “appropriate” in any manner. Oh, and he even verbalized something that sounded kind of like “moh-moh” as he made the same for more… asking for more of Nanny’s yummy gravy, of course!
* * * * *

My father has, in the past, been somewhat dubious about Niksdad and my belief that Nik takes in everything and knows and understands far more than he is currently able to communicate to us. So, on Christmas, when I heard him say, “Nik really does seem to understand pretty much everything you say to him, doesn’t he?” in a voice tinged with pride and awe, I knew that he finally understands what we’ve been saying all along; autistic and nonverbal do not mean that Nik is disconnected from the world or that he is retarded. It felt like an important acknowledgment from my father.

* * * * *
Niksdad has been home on semester break so he’s been taking Nik out and about a lot. (Have I mentioned before how much I appreciate my husband?) The weather has been nice enough that they’ve gone to the park a couple of times. The reports usually go something like this: “He did great. He climbed a lot, he rode his bike, he played in the sand a little bit and we walked a lot.” This week the reports have been full of new and exciting things Nik has started to do. Things which require balance, visual attending, and greater depth perception (something Nik’s not exhibited any great strength in thus far).

* * * * *

Even Nik’s building with his Mega Blocks has taken on a new dimension —quite literally. Where he’s usually content to simply stack and build tall, thin towers, Nik has started to build out into more than one plane. It’s been fascinating to watch as he experiments and discovers different ways to use the blocks. His analytical ability often astounds me.

Then again, so many things he does astound me.

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Waiting for Santa

Wishing you all a very Merry Christmas.
May your day be filled with wonders and delights found not under the Christmas tree but within your heart.

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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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Just a quick update to yesterday’s post

Since Addie Ville came to stay last night, Nik slept fairly well; he only woke at 4:30 a.m. but that was because we didn’t give him his extra dose at 11:00 p.m. We couldn’t —he was out cold and sleeping on his tummy and wouldn’t budge even when I gently tried to turn him over.

After some fuss and furor in the wee hours, Nik went back to sleep for another couple of hours and woke in a glorious mood! He’s been playing and singing and clapping for nearly two hours now. In other words, just like a typical day around here. YAY!

So, we’ll be off to see the trains and Santa in a few hours. Did I mention the trains? Nik seemed fascinated by them last year, even with all those mind-numbing drugs in his little body. I can’t wait to see what he does this year.

Me? I’m so excited to see him excited that I’m an emotional, weepy wreck this morning. But in a good way. Might have something to do with these bloggers I’ve been reading so far this morning. See, Christmas is the season of miracles.

It’s a cold, cloudy day but there’s no call for rain until later this evening. I think it’s going to be a good day! (And, yes, Addie Ville will be tagging along, for sure!)

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Holly Jolly Christmas

Merry Christmas!

Hope yours was full of love, laughter, and unexpected pleasures.

Nik wanted to send you his holiday greeting in person…

Maybe next year we’ll just skip all the expensive toys and gifts?

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It’s beginning to feel a lot (more) like Christmas, everywhere I go. In keeping with the holiday spirit, I’ve decided to jump on the bandwagon and share my Christmas meme-ories with you. Thanks to Kristen for the inspiration!

Part I:

What are your three favorite Christmas songs and who sings them?
I’d have to say I am rather a purist when it comes to my favorite Christmas music; my tastes run to the classical and traditional. I’m not a big fan of all the pop stars’ versions of timeless classics. I like to hear O Holy Night, I Wonder as I Wander, or What Child Is This? done by someone like Kathleen Battle (in her pre-Diva-from-hell heyday she was my all time favorite), or groups like the Mormon Tabernacle Choir.

That said, I have found some newer, more contemporary, Christmas songs done by the likes of Bette Midler, Josh Groban, and Amy Grant that I really enjoy, too. I love all kinds of authentic Christmas music (meaning not glitzed and glossed beyond recognition); just don’t mess around with my classics, ok?

My all time favorite isn’t exactly one song –it’s an entire opera. Amahl and the Night Visitors is a simple and beautiful telling of the miracle of selfless love on Christmas Eve, as told from the perspective of a poor widow and her crippled son. It has the power to make me ache and weep, sing and dance, laugh and rejoice each and every time I hear it. Christmas isn’t truly Christmas for me until I hear Amahl.

What are your three favorite Christmas foods?
Well, that sort of depends on where I am. As we’ve gotten farther away from the nuclear family and become spread far and wide, I think we’re losing touch with traditions I grew up with. As a child, I remember big turkey dinners complete with stuffing and cranberry –and homemade pies; it was kind of like Thanksgiving but with presents! When my husband and I got married, we continued one of his traditions –making krumkake, a Norwegian cookie that his grandmother used to make. This year, we’ll be having lamb at my parents; we won’t have pie or krumkake but will start a new tradition of homemade eggnog ice cream with gingerbread.

In spite of the changing traditions, there are a few timeless favorites I enjoy. I love a good eggnog. Yes, that fatty, thick, gooey, sweet elixir –with or without the spirits added! Gingerbread, thick and hot from the oven –served with warm lemon sauce makes it even better. Homemade iced sugar cookies. I don’t make them myself because I don’t have the patience to decorate them. But I do appreciate a good sugar cookie.

What are three Christmas secrets?
I can’t think of a single one. Well, except that I like opera and eggnog…but I already spilled those beans, huh?

What are your three favorite Christmas movies?
It’s a Wonderful Life; Zu-Zu’s rose petals, Clarence, the bells, George Bailey…can’t get enough of ‘em. Call me a sappy sentimentalist.

How the Grinch Stole Christmas –both the animated and the live action versions. It’s a great story full of humor and redemption.

The Santa Clause. Tim Allen in his prime. And I still believe in Santa, too.

Part II:

What is your least favorite holiday task?
Wrapping all the presents; they always seem to multiply the night before I start wrapping!

What is the worst gift you have ever received?
I should be all PC here and say “Oh nothing, they’ve all been wonderful, given in the spirit of love, blah, blah, blah…” but the truth is there have been some really weird things given to me over the years by my mother-in-law. (It’s okay, she doesn’t read my blog. If she miraculously finds it, well, she needs to know these things.)

The absolute worst was the year my husband and I had moved into the first home we had purchased. For some reason, my MIL –who has never taken much time to get to know me and what I might enjoy –decided that I really loved to decorate with the color purple. And mirrors —painted with swans. I think that gift spent a long time in the closet of our guest room until it finally got broken in our move back east. Damned careless movers…

For the record, I have nothing against purple; it is a perfectly lovely color –for fruits, clothing or gemstones.

Who is the hardest person in your family to shop for?
That would be a toss up between my father and my husband. Neither one ever has any idea of what to ask for; they never need much in the way of clothing or things like that –the polar opposite of my teenage neices. And their wish lists usually include very large, very expensive “toys” (mostly tools) that no one can either find or afford!

What relative do you dread seeing at the holidays? Or, when you were a child, what relative did you dread seeing?
I am actually ashamed to confess that I dread seeing my in-laws. It’s always awkward when we do see them. That might have something to do with the fact that my MIL is very uncomfortable with Nik’s disabilities. I think she truly loves him in her own way but doesn’t know how to just BE with him and see past the disabilities to the incredible child he is. She ends up meddling in an effort to find solutions to “fix” him and it just pisses me (and my husband) off. I bite my tongue and let it wash over me in the moment but it makes me sad and angry and the bitter taste lingers.

Fortunately, we don’t see them that often; the last time they came to visit was nearly 18 months ago. That’s a factor, too; they live a mere three hours away and have only seen Nik three times since we moved back east in 2005.

What holiday tradition would you eliminate if you could?
Um, visiting in-laws?? Just kidding; if I did that then we wouldn’t see my parents either!

If I had the power to make it so, I would make it illegal for retailers to put up Christmas decorations before Thanksgiving. I get so sick and tired of the crass commercialism of the “holiday season.” The significance of the actual holiday –regardless of the religion or holiday one celebrates –becomes minimized and marginalized to the point that people aren’t sure what’s okay to say to one another.

What do you swear, every holiday season, that you’ll never do again, only to find yourself doing it again the next year?
Waiting until the last minute to wrap gifts. Eating too many cookies while I bake them. Sending Christmas cards late. But hey, why break with tradition, right?

What are your traditions and favorites?

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