One Day at a Time

God, grant me the serenity

To accept the things I cannot change

The courage to change the tings that I can

And the wisdom to know the difference

Serenity Prayer

How fast the time flies when you aren’t paying attention to the big picture every single moment. I feel better after writing last night’s post and reading some of the incredibly supportive responses. I do forget sometimes that it is ok to feel the feelings and wallow a bit before moving on.

Today, I am moving on. Today. We’ll see what tomorrow brings when it comes.

My mother and I went to Tar-jeh (Target) last night for a little bit of retail therapy. Ok, very little bit; I needed to get a new coat and gloves for Nik now that the weather has gotten cold and damp. I found a very cute snow suit and gloves for a reasonable price. I’m sure you’ll see it in future ads, er um I mean pictures, on this blog. More importantly, I found some lovely traditional Christmas music CD’s for only a dollar a piece!

Music is such a vital part of who I am and yet, in our current situation, I haven’t been singing or playing music or even listening to much except when I am working out at the gym; even that one has been sporadic lately! I think that contributes a lot more to my state of mind than I realized. I’ve been feeling really down this past week over the prospect of not decorating for Christmas (too many dangers for Nik) and really scaling back due to finances. After finding the CD’s last night, I popped one into the car stereo on the way home and instantly felt more grounded and soothed. Today, I am listening as I putter around the house on this rainy, gloomy November day. Every little bit helps, right?

We had feeding therapy this morning; it was another wonderful session with Miss M. She is so proud of the progress Nik is making and was pleased to hear how well he did at Thanksgiving dinner; I haven’t blogged about that but he did great taking tastes of everything on the table (except the peas) and even tolerated a few very small soft chunks on his tongue without panicking. He’s showing a bit more conscious control over his tongue as well. Major progress.

I talked to Miss M about the augmentative communication (AC) and some of my concerns about whether she had enough exposure since she’s been working with “the little guys” for so long. She told me that there is a very big push now to start using AC much sooner so she is getting up to speed. In addition, Easter Seals has opened a new assistive technology department right in her building and we will have access to their services while we work together. We even agreed that we would extend the two sessions by fifteen minutes on the front end (we are the first appointment of the day) so we can get some extra time in.

I felt good as we left. The same kind of good feeling I had when we made the decision to remove Nik from school. A right feeling down to my bones.

Nik’s birthday is Sunday; I cannot believe that he will be four years old. It seems like only yesterday he was a frail, tiny bundle with wires and tubes attached to him. I can still smell, in my memory, the scent of freshly laundered hospital blankets and the slightly sweet plastic of his oxygen tubing. For so long I couldn’t even imagine what my child would look like without those things. Yet here I am today, mired in the memories and fearful of letting them go. Not because I don’t want to move on and forge ahead into whatever the future may hold.

I don’t want to forget where we came from.

I know that time will soften the jagged, raw edges but I am wary of letting the scar fade completely. I want to remember the fight in my son’s spirit –filling his tiny body –willing himself to defeat such seemingly insurmountable odds. I think if I can only hold on to that, I can remember more readily that same fighting spirit in those moments when the fight isn’t literally life and death. That my warrior-angel child has fought tougher battles and prevailed and will continue to do so –over and over, as long as he draws breath and as long as he is loved and nurtured.

Yes, that I can do for my child. That has been –continues to be– my special gift to him every birthday. Every day.

Hard to believe that four years ago Nik was fighting for his life every moment of the day.

Three years ago, he was just learning to sit up independently.

Two years ago Nik was unable to stand independently.

Today, I watch my child in awe and wonder as he rambles and roams about our family room –chattering and humming all the while. Listening to his laughter as he carries the pillows from the sofa –one clenched between his teeth, the other in his little fingers –to deposit them on the other side of the gate to the back hall. It is a game of which he doesn’t tire easily. I watch in amazement as he moves his large castle climber about the room, gauging exactly where to position it so he can climb up and reach something on top of the television. I scold him with a laugh; he relents with a smirk and scampers on to his large green toy bucket (a 20 gallon bucket that I stow his toys in at night) to climb inside and then tip himself over. From there it is back to the castle. He slides head-first backward down the small sliding board. He giggles when he hits the bottom and does it over again.

From such humble and frightening beginnings to the laughing, confident, perpetual motion machine I see today.

Perspective –that is his gift to me.
**************************************************************************************
Miracle
(Written by Linda Thompson/Stephen Dorff, Recorded by Celine Dion)

You’re my life’s one miracle
Everything I’ve done that’s good
And you break my heart with tenderness
And I confess it’s true
I never knew a love like this ’til you

You’re the reason I was born
Now I finally know for sure
And I’m overwhelmed with happiness
So blessed to hold you close
The one that I love most
Though the future has so much for you in store
Who could ever love you more?

The nearest thing to heaven
You’re my angel from above
Only God creates such perfect love

When you smile AT me I cry
And to save your life I’d die
With a romance that is pure in heart
You are my dearest part
Whatever it requires
I live for your desires
Forget my own, your needs will come before
Who could ever love you more?

There is nothing you could ever do
To make me stop loving you
And every breath I take
Is always for your sake
You sleep inside my dreams
And know for sure
Who could ever love you more?

11/30 — Edited to Add:

Good catch by Niksdad…so much for the clarity of MY perspective! LOL

Three years ago Nik was in the hospital (again) for correction of his abdominal malrotation and obstruction; TWO years ago he was learning to sit; Last year —his third birthday —he couldn’t stand.

Sigh, everyone needs a good and careful editor!

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Eatin’ Good in the Neighborhood

It’s felt like a long week for some reason. Could be the long holiday weekend in which Nik exhibited the balance of a Zen master in his escape from the crib. Or the frequent interrupted nights of sleep which have been randomly sprinkled throughout the week. Or, perhaps, it’s just the emotions I have roiling inside my head and heart lately. I have been deeply affected by both the utter joys of some of my friends’ blog posts, and sunk low by the pain, worry, or despair in still others. I have been feeling things very acutely lately. I guess it takes a toll after a while.

Well, that’s my long-winded explanation for how I got Niksdad to take us out to dinner tonight. Not a date, though we have one coming to us soon I think. Rather, a nice family outing —something we haven’t done in a very long time. In the past, such outings were not very enjoyable for any of us; Niksdad and I spent the entire time marshalling the toys Nik would propel halfway across the aisle —oblivious to the glares of other diners. Or Nik would get fussy and squirmy from the lights, the noise, the time of day…

Since we’ve been on a roll lately, we decided to chance it. We planned our outing with military precision. Pump? Check. Syringe and tube? Check. Meds? Check. Sippy cup? Check. Mesh feeders? Check. Toys? Check. Forward march! And off we went…to Applebee’s for an early dinner. And it was a pleasant experience! OK, except for the part where I smashed the tip of my finger under the seat cushion of my broken chair. No blood; I’m fine (sniff, sniff…rolls eyes dolefully).

Nik was amazing throughout the entire dinner! He was alert and fully engaged in the environment and with us. That is not something I have ever been able to say about previous dining experiences. I did brush Nik and do joint compressions before we left the house; maybe the sensory input helped him regulate himself better? Or, just maybe, Nik has made another developmental spurt.

In any event, Nik sat much like any other 3 or 4 year old in a restaurant. He was very well behaved —only threw one thing and that was a teething biscuit that he decided didn’t have enough flavor to suit him! He “nibbled” (ha! Ok, licked) the teething biscuit alternately dipped in salsa and in the horseradish sauce from our onion rings. (Yeah, it’s a good thing I’m going to the gym tomorrow morning!)

Nik’s favorite thing, the thing which held his attention throughout most of the meal was a pineapple wedge.

Between the pineapple and the balloon the waitress brought for Nik to play with, we never had to pull out a toy. Not once!

Nik slurped and licked and laughed and played at taking turns feeding Mommy and Daddy. He tugged and batted at his balloon —laughing hysterically each time it bopped him in the face. Niksdad and I laughed right along with him.

It was the first time I can remember in a very long time that we simply laughed together and took such unadulterated joy in a moment that included our son’s active participation. Frequently we will watch Nik and laugh at his antics, but this was different.

This was a shared moment —a relationship.

And while I am bragging, I must report that Nik was very clear in his communications tonight. When I offered him something in the mesh feeder (I brought three with us!) that he didn’t care for he simply pushed it away and reached for the one he wanted —or for the pineapple wedge. Poor wedge, suffered nearly the same fate as our friend the peach slice!

And Nik colored! Ok, I don’t mean in a coloring book with pretty pictures kind of way. I mean in the manner of a child who has just begin to learn about holding a crayon; chubby sticky fingers clamped awkwardly around the too-thin waxy stick, Nik jabbed at the page and actually moved his hand back an forth a time or two. (The picture on the right is cropped bit of the kid’s menu. If you open the pic in a new window, you can see the oragne crayon marks!) He even showed his hand preference —finally! Turns out my son is a lefty!

Yeah, we got some odd stares from people around us. Not so much disdainful looks. More like curiosity about the little boy with the tube running under his shirt. The boy who was so obviously having a grand time with his parents. Wondering, perhaps, what is “wrong” with him? Wondering perhaps what is wrong with his mother that she keeps talking to him like he’s done advanced calculus on the back of his napkin? Who knows? Tonight we couldn’t have cared less what the rest of the world thought.

Tonight, we were “just another family” and it felt grand.

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Belated Monthiversary

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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Stealth Monkey

Be careful what you wish for
cause you just might get it all
you just might get it all
and then some you don’t want

Daughtry

Today was a wonderfully peaceful day for me. Nik slept through the night —second night in a row —and I awoke feeling rested and refreshed. No special plans today; Niksdad ended up having tons of studying to do for school so we opted to stick close to home. I had a leisurely start to the day and went to work out while Nik and Daddy went to the park. I even managed to get out to a matinee all by myself. God bless Niksdad!

The movie was wonderful —bittersweet with no chance of a happy ending as it is loosely based on presumed history. None the less, it was a couple of hours of delightful entertainment which tugged at my heartstrings. I had a good time. Niksdad? Not such a good time.

I called home after the movie to find out if Nik had slept. “Oh, no,” Niksdad said in a cryptic tone. “Um, OK, did he poop and you’re cleaning up after Poocasso?” “Nope.” “Everything OK?” “I’ll tell you about it when you get home,” he replied in that odd tone that said no one was hurt but something serious had transpired in my absence. Breaking a few local speed laws, I made it home to find my son playing happily in the family room; his father sat at the dining room table with a worn, weary expression on his face. In the moment our eyes met and he started to laugh quietly, I knew exactly what had happened.

“I put Nik down for his nap and was in the loft studying. He was really quiet for a while,” he told me. “After about 45 minutes, I thought I heard what sounded like the armoire door opening and closing; I went to investigate.” My jaw dropped in disbelief. “I opened the door and saw this little body come walking toward me in the dark. I looked in the crib; sure enough, Nik was not there!”

“Um, honey, if a small body was walking toward you in the dark, I’m pretty sure it wasn’t one of the cats or any of Nik’s stuffed animals,” I said in that tone one reserves for people who are in a deep state of shock. Clearly, Niksdad was a tad traumatized by the events of the preceding hours. “Any idea how he did it,” I asked. “I mean, you didn’t hear the thump or anything?” Niksdad wearily shook his head. “I was dumbfounded,” he sighed. “I put him back in and went to get the net from his closet. If I hadn’t turned around when I did, I would have missed the second time, too.”

Apparently, my son —whom one doctor once described as having “diminished mental capacity,” and who cannot talk and does not eat but is rapidly perfecting his new skill of walking —cogitated, analyzed, visualized and what-have-you his way to figuring out how to get out of his crib without making a sound. That’s right —my stealthy monkey figured out a masterful bit of advanced motor planning which would make Miss D exceedingly proud. But I’ll let Niksdad tell the rest.

“The whole thing took maybe a full minute. He threw one leg over the side and then, somehow, hoisted himself up so he was actually sitting on the rail.” “You mean, both legs dangling over one side?” I asked incredulously. “No, more like he was straddling a fence. But what amazed me was the balance; he wasn’t wobbly at all and it wasn’t like he was clinging with his legs very much at all—like he’s done it a few times.” Uh-oh. “Then he held on, swung his other leg over so he was facing the crib and shinnied down to the floor. Never made a sound.”

I know it’s not a very loving and wifely sentiment, but damn I’m glad Nik did this on his daddy’s watch and not mine! Whew! We both kind of knew it was coming but thought we might have a little while longer before Nik made the cognitive leap to realize he already has the physical skill to get out of the crib.

It’s amazing to me this incredible spurt that Nik seems to be going through. In the past few weeks he’s just made amazing progress in so many areas. More on that in another post. I’m going to go pour myself a big glass of wine and recover from the shock…

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Nik Walks…The Evidence

Here’s a still frame from the video of Nik walking.

Check out the video HERE.

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Put your hands together…

Put one foot in front of the other
And soon you’ll be walking cross the floor
Put one foot in front of the other
And soon you’ll be walking out the door

Jules Bass (Santa Claus is Coming to Town)

Yes, folks, it’s true! After a multi-year delay and lots of fits and starts, I think I can safely declare Nik is walking! Not well and not very far at one time, but walking without a doubt!

Lately, Nik has been taking a few steps here and there before quickly falling on his bottom and looking perplexed. Today, it took a moment for it to register what I was witnessing — my son striding confidently (and fairly well balanced, too!) across the family room. Yup. No cruising, no hand-holding, no hurtling toward an object he could hold on to. And he did it several times. My heart burst with pride in my chest!

Nik’s still not confident enough to travel great distances, but he’s fantastic at roughly six-foot intervals as long as he has a target of some sort.

Did I mention I’m elated? Proud? Over the moon?

Makes all the other shit we’ve been dealing with lately fade away. Ok, not completely. But there’s progress there, too. Baby steps in the right direction. More in a different post; this one’s just for bragging!

Have I mentioned yet that I am ecstatic? Euphoric?

Filled with trepidation at what’s coming next?

Bring it on, Nik! Bring it on!

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