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Archive for the ‘warm fuzzies’ Category

Lest you think it’s all misery all the time around here lately, we’ve got new signs and sounds coming along! And Nik becomes more affectionate; less discriminating, apparently, but definitely more affectionate!

Just sharing the love!

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Gazing down on his peaceful face, I haven’t got the heart to wake him but I must. This change to Daylight Savings time still has his system off kilter —even with the melatonin. He wakes to play at two, three, four in the morning before going back to sleep until seven. He needs to nap but cannot fall asleep until nearly three in the afternoon; it is now after four and he needs some time awake before dinner and his meds.

I whisper softly in my half-hearted attempt to wake him. “Niiiikolaaaaas,” I draw it out into sing-song call. He snuffles and presses his face deeper into the mattress of the crib. I know I shouldn’t really do it because it’s not great for my back —or my wrist, which is in the midst of a carpal tunnel flare up— but I scoop him up and cradle him in my arms. “Shhh,” I whisper in his ear as he begins to fuss at the indignation of being torn from his cozy lair. Tossing his head from side to side, he tries to get comfortable. I begin to hum the lullaby from Mary Poppins —“Stay awake, don’t rest your head. Don’t lie down upon your bed…” He sighs dreamily and snuggles his head in the crook of my neck.

Continuing to hum, I make my way down the stairs with my not-so-little boy nestled in my arms like the treasure he is. Midway down the stairs, my eyes blur with unshed tears as I breathe in the childish scent of his soft skin and hair. I gently rub his back through his flannel jammies and think to myself that it won’t be long before I cannot carry him like this anymore. The thought makes me sad.

The tenderness of the moment reminds me that all the things we’ve been through lately aren’t really important. The bumpy patches of behavior, the loose bowels from his latest round of antibiotics, the massive amounts of laundry he has generated every single day for a week as a result of those same antibiotics, the wakefulness in the middle of the night —they don’t matter.

What matters most are the moments of joyful connection we share with increasing frequency. The squeals of laughter as I blow raspberries on his neck and he pulls my head down for more and still more again. The gleam in his eyes as he holds out his arm to request a tickle with his Percy train going up and around his neck and over his shoulders. The tenderness with which he offers me his soft little lips for a kiss; the kisses he blows to me from across the playroom gate.

Lately, I find myself being swept off my feet by this pint-sized charmer. He bangs his hand against the side of his chair and, unbidden, offers up his finger to me to kiss away the hurt. Where did he learn this? When? When did he make this tremendous cognitive leap and decide that he not only loves his mommy but he must show it at regular intervals? When did he decide that it was imperative that we take turns putting the shapes in his multitude of sorters? His little hand thrusting a block into mine then guiding it to the space it belongs; I pretend I don’t know how to do it and he growls in —what? disgust? —and takes the shape from me as if to say “I’ll show you, Mama.” Then he hands me another shape and wordlessly urges me to try again.

I am grateful that he is always eager to give me another try. On the days when my patience is short and my voice is raised or I have, I am ashamed to admit, slapped his hand to keep him from pulling at the tube during feeding time (he is able to use that to pull the pump to him and turn it off or, worse, tip it over) —in spite of all that, he readily forgives and forgets.

Like the days in which I can still carry him down the stairs, I know these days of easy forgiveness and unconditional love are also numbered. As he gets older and develops still greater awareness and understanding of the world around him, will he begin to remember all those moments and tote them up in a damning tally against me? Perhaps.

But today, I bask in the glow from his laughing eyes and dimpled face as we dance and sing, tickle and sort, and find our way together.

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Having found some highly useful information about Intracranial Hypertension, I truly wonder if this is what has been bothering Nik. I don’t know if this is what Nik is suffering from but it sure seems to fit; it puts his sometimes extreme symptoms into a context which is understandable. Whether he has ICH, and if so what the root cause may be, remains to be determined. For now, though, this is the framework within which we are operating; it helps us to try to manage the frightening episodes better. Well, okay, for the most part.

Nik seems to be learning to listen to his body lately as he struggles —as we all struggle —to deal with this mysterious ailment which sneaks up on him. It seems that as he moves around and is extremely active, minutes later he is felled by the most extreme pain. When he plays quietly, either sitting or lying down, the pain seems so much less debilitating and the episodes are slightly farther apart. I think Nik —who is a very, very smart child —is figuring out this strange dynamic all on his own. Sometimes he remembers too late that his active climbing, spinning and crawling bring on the panic-filled episodes. Other times, he seems to know instinctively that he needs to lay low.

I greedily reap whatever benefits I can of this new found, tenuous understanding of his. Let’s face it, there’s something to be said for a child who is normally quite active —and, therefore, too busy for snuggling and expressions of need or affection— suddenly feeling so poorly that he stops. And snuggles. And kisses.

And brings his favorite book with him as he nestles into the soft fullness of my lap.
Nik’s not much of a bookish child; he prefers to do his learning in a hands-on, full-body experiential fashion. Yet, somehow this book has captured his fancy since it was first gifted to him nearly two years ago by Miss Eleanor, his OT through Easter Seals. I don’t know if it is the sound of the clicking crickets as he presses them that captivates him so and causes him to giggle with glee. Or maybe the large, softly shaded pictures which are easy to see. Or the feel of the thick board pages between his little fingers as he turns them. There is simply something magical about this book.
I put it away for safekeeping and bring it out from time to time when we need some quiet play. Each time he sees it completely anew. His eyes dance and he claps his hands with delight. Usually he will grab it from my hands and settle onto the floor to immerse himself in the world of Little Cricket —just the two of them— with Cricket’s mother and all their woodland friends.

Today is different. Nik’s slender fingers grasp the book and tug it from my hands but he doesn’t settle alone on the floor. Quietly, as quietly as the little mouse in the story book, Nik slips into my lap, dragging his beloved book with him. He turns to look at me with that little laughing twinkle in his eye; my heart swells every time I see that look. I kiss his forehead as his tousled head lolls back against my breasts. Smiling into his hair, I feel little hands reaching to hold mine, guiding me to turn the pages as he squirms and clicks the noisy crickets.

My breath hitches in my throat as I begin to read. Our first story together.

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Yeah, I’m gonna take that mountain.
Ain’t nothing gonna slow me down.
And there ain’t no way around it.
Gonna leave it level with the ground.
Ain’t just gonna cross it, climb it, fight it:
I’m gonna take that mountain.

I was born a stubborn soul;
This is just a stumblin’ block;
I’m gonna take that mountain.
—Reba McEntire

I had hoped to post this on the 2nd. But, wow, life keeps coming at me faster than I can duck and dodge lately, it seems. This post has been “in progress” for a couple of days now. Had a few things keeping us on our toes recently, as you may recall!

What, you may ask, is the significance of the 2nd? It was Nik’s 45-monthiversary. Yeah, I know, you don’t usually count the months after they reach a certain age. But since Nik was born, on the second of every month I stop to celebrate the miracle that is my son. (For those of you trying to count right now, Nik was born on December 2nd.)

Last night, after Niksdad and I finished filling out a sensory profile for school (yay, they are finally taking us seriously about the sensory issues!), I sat down and typed out a quick list of some of Nik’s accomplishments over the past couple of weeks. I also did some serious reflecting on where we’ve come together as a family and what Nik has been through as a human being. I got so overwhelmed that I couldn’t write anything

Try as I might, I still cannot bring myself to write in any coherent fashion about the events leading up to Nik’s delivery by emergency C-section or of the 209 day s we spent in the NICU. Sure, I can share the specific statistics of Nik’s weight, length, Apgars (which were 9 and 7), his diagnoses, and his surgeries. I can share funny anecdotes about my son and interactions with other people. What I cannot yet write about —not even for myself — is what I went through. The emotions are too raw. Too real. Too close, still.

How can you capture the essence of one’s personal experience in the aftermath of being told not to plan or celebrate your child’s birth yet beacsue he may not even make it through the night? The implications of receiving such advice are staggering still. There are some things which one cannot write about until many, many years after the fact; I guess this must be one such for now.

In any event, I can —and do joyfully —share the incredible growth of my miracle child. Unlike the last party I threw, this one is full of joy and laughter —and overflowing with love and pride. I hope you’ll join in the festivities!

At one month old, Nik’s feet were a mere 1 ¾ inches long —smaller than the bowl of a common table spoon (not to be confused with a Tablespoon for measuring). His limbs were so small and fragile. Nik’s entire arm was the size of my index finger; my husband’s wedding band fit all the way to Nik’s elbow. He had gone through the first of his numerous surgeries at the tender young age of 19 days. Nik hated to have a wet diaper; one of the first things he learned to do was curl his foot to confuse the oxygen sensor attached to it. When he needed a diaper change, Nik would curl his toes and the nurses would come running to see what the alarms were all about. Even then, Nik was exhibiting some pretty amazing smarts!

Fast forward to today. Nik has been through numerous surgeries and spent way more time in the hospital than any person ever should. To date, he has spent 18.9 percent of his life in a hospital —most of it in one continuous stretch. That doesn’t include outpatient visits or ER trips. Do the math for your own life; if you had spent that much time in the hospital, what would your outlook on life be like? I am continually in awe of my child’s inherent sunny disposition and his utter confidence that he can do absolutely anything. And he can; the boy is unstoppable!

If you’ve been reading my blog for a while, you know that Nik has made some amazing strides recently —just surf my recent archives for plenty of examples! Here are the latest in what I hope will be a long, continuous line of “amazing and death-defying feats” from my little monkey:

Nik walks. Perhaps not with elegance or grace but certainly with verve and enthusiasm to spare. He climbs like a monkey! The sofa, the crib, the window sill…

We play so much more than ever before. The joy and laughter are no longer one-sided; when I can engage him, Nik participates fully and joyfully.

Feeding is becoming enjoyable for both of us again. Nik’s still not eating but he is making great progress with chewing things he wouldn’t chew before —wash cloths, chewy tubes, Nuk brushes —I think because I am making a game out of it. He is trying so many new tastes and textures, still only licking, but without fighting. If I can encourage his enjoyment of many things, I have confidence that he will actually eat them one day.
Nik is now making so much more eye contact more consistently. He laughs appropriately (sometimes not) and is beginning to initiate contact and communication in his own way. Lately, it seems there has been a communication explosion. Nik takes my hands to guide them down to his tray when he wants to get out of his chair. To his lap belt when he wants out of the stroller. To the gate when he wants to go through.

Nik is beginning to communicate more with his voice. While the words aren’t there, he makes sounds that are the tonal equivalent of “No” or “Mo-om!” —you know, in that admonishing tone. Same thing for “up” and “out”, both sound similar but he uses them in the correct context quite often He will approach Niksdad and make a “raspberry” when he wants to play with him (the “fart” song I mentioned here). He will hum the tune of “Wheels on the Bus” when he scoots over to be brushed, “Row, Row, Row your boat” when it’s time to brush teeth. He gives kisses now with a smacking of his lips to the air before he tips his forehead to my lips.

Nik is wearing his glasses more; it’s still a battle sometimes but when he is engaged in an activity he forgets he has them on and will wear them for up to 40 minutes at a time. And speaking of being engaged…Nik will stay with an activity for anywhere from 20-40 minutes now (with prompting and interaction w/someone). It used to be less than one minute!
My once fragile and sickly little child has become strong, strong, strong. He goes on and on like the Energizer Bunny on steroids! The other day, he tipped over his Kimba seating system. The thing weighs roughly 50 pounds! Slow is not in his vocabulary; he’s got things to do and “lost time” to make up.

And did I mention how smart he is? Seriously. Nik isn’t terribly interested in playing with things “appropriately” but if you give him leeway to explore and examine something? He will figure out how it works in the blink of an eye. Sometimes he doesn’t seem to realize that he has all the information to put his skills to work and then…BAM! Just like climbing out of the crib. And he knows the deadbolt on the front door is the thing that keeps him from getting out. —for now anyway! I am already trying to think two steps ahead to solutions for the day —coming very soon— when he realizes he can open that door to a great big world.

I hope the world is ready for Nik.

Ready or not, here he comes!

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(Note: Drafted on 8/28/07. Posted 8/30/07)

OK, you know that Nik likes to be brushed ’cause I told you about it here. Recently, I was trying to capture video of Nik walking and singing. Yeah, right…it was a total bust! But what I captured was pretty cool…and part of it was completely unexpected! He climbed into my lap and even tossed aside one of his favorite toys! Oh Miss D would be so proud!

You won’t see my face because I was trying to hold the camera and brush Nik at the same time. Think it’s easy? Lemme see your videos, smarty!

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