Archive for the ‘unexpected gifts’ 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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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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While many moms are looking forward to crayon art work or collage cards and tissue paper flowers for Mother’s Day, I think my gift has them all beat. Shoes.

Yes, that’s right, shoes. But not just any shoes; mine are very special —one of a kind! (Er, um, make that two of a kind.)

Nik gave them to me this morning as I was helping him dress. “This is the way we put on our socks, put on our socks…” When it came time to sing the word “shoes” I paused; Nik filled in the blank with the sign for shoes! It was so unexpected —we haven’t exactly been working on it very consistently— I had to replay the scene in my head to make sure Nik really did it. I thought I had seen him do it yesterday but wasn’t certain if it had been intentional.

Shoes. Walking on sunshine…

Wishing you a Mother’s Day filled with love, joy, and unexpected gifts.

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Today, God gave me a reminder about the unexpected joys and miracles we can find if we but take the time to look at things in a different way.

Our new little friend is so tiny that it’s head is roughly the size of a small plum and it’s entire body could fit in a small soup bowl.

I guess the other lesson for me here is about letting go of what things should look like or how they should proceed; Baby bunny is laying smack-dab in the middle of a cluster of iris that I really need to dig up and separate. Guess it’s just going to have to wait; bunny is still very young —Niksdad estimates roughly two weeks old— and its mama comes at night to feed it. If I touch it at all it could cause the mama to abandon her baby and he might die.

No amount of pretty flowers and lovely landscaping is worth that cost.

Happy (early) Earth Day!

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Tiny tots, with their eyes all aglow,
Will find it hard to sleep tonight

~The Christmas Song

Well, our eyes are all aglow here –at least two out of three of us anyway –but it’s not from the joyous anticipation of Christmas. Don’t get me wrong, we all love Christmas and are excited about it’s imminent arrival; it’s just that we’ve been a bit preoccupied with a recent visitor –I’ll call him Joe —G.I. Joe. As in “What’s up, Chuck?” (Okay, if I have to explain it…never mind!)

It’s been another very full week with lots of things going on —besides the advent of our unwanted pal, Joe. But he did bring us some early gifts –including fever, nausea, and a very upset tummy. The glittering I see in the eyes looking back at me? One hundred and one degrees shining back from both the kid and the face in the mirror. There is such a thing as too much symbiosis. Really.

I’m not sure I have the energy to write in detail about it all so here are the highlights:

Nik saw Santa on a hook and ladder truck Sunday night –right on our street; Nik was joyfully overwhelmed and practically kicked poor Niksdad in the face as he flapped and squealed with delight from his vantage point on his Daddy’s shoulders. The local fire department brings Santa around to all the neighborhoods each year. The past two years Nik has slept right through it. This year we decided to see how he handled it. Santa who? He wants the big, shiny, red truck with the flashing lights. Fat guy in red suit optional.

Monday, Niksdad took over and marshaled Nik to his appointment with the cardiologist; it was his annual check up –something he’s going to need to have for life. The visit was good but Niksdad does have a couple of questions based on the written report we got in the mail on Wednesday. Something raised a red flag about possible thickening of one of the atrial walls. In and of itself it’s not a scary thing but it bears investigation and clarification. Overall though, he was given a pretty clean bill of cardiac health. Yippee!

Wedged in among doctor’s appointments this week were a couple of feeding therapy sessions and some OT and PT, too. All good stuff with positive, forward motion. More on those another time.

I’ve been watching how Nik has been playing lately and notice a big shift; he’s more interested in and attentive to some of his books –the musical ones with thick board pages that he can’t tear, of course. Where he used to simply toss them aside or only played the music, he now will choose a book from a couple I offer and very deliberately sit on the sofa to read. He still plays the music and pushes all the buttons, but he also actually looks at the pages and turns them back and forth, trying to make some sense of what he sees. He’s also begun playing with wheeled toys in a very appropriate way. The two trains he got for his birthday are now more than objects to mouth; he actually rolls them back and forth across the floor and then goes after them. The neat thing is that he figured that one out all on his own –no help from constant repetition by me or Niksdad.

We finally got to see the diagnostician on Thursday. Almost didn’t make it because Nik was in the throes of the GI bug. We waited too long to get the appointment; I wasn’t about to cancel. I am still processing thoughts and impressions from that visit and will save that for another post. It wasn’t all that I had built it up to be in my mind; expectations can be such a tricky thing. No matter how good the reality is it still doesn’t measure up. Sigh…

We added a new service professional to Nik’s team yesterday morning; an orientation and mobility specialist from the state division for the visually impaired came to evaluate Nik. This, too, will warrant a separate post soon; Niksdad and I really liked the guy and he has some great ideas for helping Nik learn to navigate his environment and develop a greater awareness of his own body in space.

The presents have all been bought (I think) but need to be wrapped, the tree is finally decorated –though not in our usual style, and I do not have to cook Christmas dinner. Whew! It’s been an overwhelming time here lately and I feel so behind in things I want to write about and share; I’ve been tagged for some memes and awards and I haven’t had the time to respond but I will soon.

In the midst of the craziness, there have been some beautiful bright spots. I received the most wonderful, thoughtful Christmas package from another blogger. I don’t want to embarrass her so I won’t name her. But I do want to publicly thank her for sending me some much needed Christmas cheer and a little TLC, too. I fully understand where her children get their loving, generous spirits and why her students do some inspiring things, too.

On the same day her package arrived, my father came over to help me with some household projects that have been put off while Niksdad has been in school. Big things like modifying my desk and helping to transform our loft space into a more usable office space for both Niksdad and me. He helped me identify some other projects –such as putting in a new front entry floor, adding a counter and cabinets to my tiny laundry closet to make it more user friendly, even helping my husband install or replace some lighting fixtures.

None of it is truly mission critical –it doesn’t keep us from moving ahead with the things we need to do (well, not usually). But having those things done will surely make our home feel a little more settled, a whole lot less frenetic and cluttered, and someplace where we can find a small measure of serenity. Something everyone can surely use, no matter the time of year.

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If there is a load you have to bear
That you can’t carry
I’m right up the road
I’ll share your load
If you just call me

So just call on me brother, when you need a hand
We all need somebody to lean on
I just might have a problem that you’d understand
We all need somebody to lean on

Lean on me when you’re not strong
And I’ll be your friend
I’ll help you carry on
For it won’t be long
Till I’m gonna need
Somebody to lean on

“Lean on Me” ~ Bill Withers

Photo courtesy of Treklens.com

I am overwhelmed with the outpouring of offers of specific, tangible support I am getting from people in response to this post. It is humbling and heart warming. My knee-jerk reaction is to graciously say, “Oh thank you so much but I really couldn’t impose.” Yet, all my life, I have longed for the kind of community which is now rallying around me; I would be stupid —and a jerk— to turn it away.

My upbringing was such that I was admonished never to make a nuisance of myself. It certainly was not acceptable to burden others with my needs and any request I might make was sure to be an imposition. Accepting help from others is not easy for me; I have always been the listener, the advisor, the fixer of broken things and solver of problems. I even managed to make a profession out of it.

I once managed to find the laptop an old boss thought had been stolen off a plane in Chicago en route to Switzerland. He needed everything on it replicated for a meeting he was scheduled to have 36 hours later. I got him the new computer in the nick of time —data and all (thank God for corporate system-wide backups!). I also managed to have his old laptop in my possession the same day. Oops, he had (I suspect had too much to drink and) “forgotten” it when he changed planes in Chicago. A very savvy flight attendant picked it up and secured it in his locker until his next shift so he could turn it in. I sent him a lovely thank you gift from my boss.

I tell that story not to boast —though it was one of my more challenging feats (for the same boss whose family I relocated from Norway and whom I took for a driver’s license test after he broke his shoulder skiing in Canada. It was great preparation for motherhood, I must say). It simply illustrates the degree to which I have had to be self sufficient. I have had to work hard to earn the respect of coworkers who thought I was too young or inexperienced to handle the level of responsibility I was given.

I don’t let myself fall very often so when I do I usually do it quite spectacularly. The world comes crashing down around me and everything grinds to an abrupt halt. Well, it used to in my time BN —before Nik. Now I realize that I need to simply reach a hand up through the quicksand and, even if I can’t see the face it goes with, hold on and accept the hand up. It’s still difficult for me not to feel like I am imposing on others’ good will but I am practicing.
All the moms —and dads— who have reached out to me so often have made it safe for me to not think I have to be be Super Mom or Woman of the Year. You give me a comfort zone in which I can practice asking for —and actually accepting— help. That is a gift I did not expect to find in this arena. But it is one I treasure greatly.
The more I accept the more I have to give.

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