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Posts Tagged ‘gratitude’

Sitting at the breakfast table with my family… Just letting that sink in a bit…

Watching as Nik manages his bowl of cereal and banana, his scrambled egg and sausage, and a small glass of almond milk (hello, bottomless pit and hollow legs!). So very typical and yet…not. It occurs to me that, once I’ve prepared his food, the only assistance he needs lately is an occasional admonition to use his napkin or to slow down. To take a break from his methodical shoveling of everything into his mouth until it is overflowing.

I look across the table and watch my husband watching our son. He catches my eye and we smile. “You catching all this?” I ask with a lump in my throat. His only answer is a giant smile which transforms his face into pure joy.

So many years we worked with Nik to just be able to sit in a chair without falling over, to hold a utensil , to lift a cup. So many years we worked with professionals, like our beloved Ms. Michelle, to help him learn to tolerate textures, to initiate a swallow, to chew. Teaching him how to drink from a straw, to suck, swallow and breathe. The things which come naturally to babies but not to our child who spent too long on a ventilator and too long with tubes in his nose and mouth. All the years we wondered and worried, “Will he ever…”

The answer sits at our table in his very own chair with is very own place mat, dishes and utensils. It all looks so…normal.

It looks an awful lot like a resounding “YES!”

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Ok, so I know today is the whole Wordless Wednesday thing and I could skate by without a post and just slap up a cute picture of my kid and be done with it. But I can’t because, in this case, the picture is just a small part of the story. And this story is too good not to tell.

We’ve been going through a few bumpy stretches around here as we work to find a new equilibrium. Between Niksdad working nights now and getting less time with Nik, the wonky school schedule, the “super storm,” the broken speech devices (it’s fixed now!), the belly troubles, the ear infections and the early triennial evaluation of every aspect of Nik’s needs and services…yeah, bumpy. When we get into a challenging run of days, it’s easy to forget to look for the good stuff.

Like this:

He’s a great date!

So, what’s so special about a picture of my uber-cute son sipping on a beverage at our local Starbuck’s? The fact that he asked to do it.

Our pediatrician’s office is near a Starbucks with a drive-thru window. Whenever we go to the pediatrician, as we did yesterday for yet another raging ear infection, we stop at the drive-thru for Nik’s favorite treat: lemon cake. Nik only ever gets it after seeing the doctor. I don’t even recall how we started it, but it’s become a part of the ritual, part of the litany he recites endlessly as I drive with his speech device. “Doctor’s office first, lemon cake next!”

Over time, we’ve progressed from sharing a slice between us to Nik hogging it all to himself wanting a whole piece. I usually drive and sing and hand back a bit of cake here and there as we head home on the highway. It’s not exactly the neatest way to do it, but it’s always been such a hassle to try to wrangle Nik in public places with lots of things for busy hands to get into while Mama pays for stuff. In short, it’s been a sanity-saving measure for me.

As we passed the Starbucks on our way to the doctor’s office, Nik kept repeating the word inside on his device. “Yes, baby, we’re inside the car.” “Yes, Nik, we’ll be inside the doctor’s office soon.” I didn’t really understand what he wanted but was following the pattern of AAC use which is that you acknowledge every utterance so as to encourage continued communication. It’s become so ingrained that there are days I have to catch myself from doing this to my husband as he speaks!

I assume that I have interpreted Nik’s communication correctly because I didn’t hear it again. Until  I am about to turn into the drive-thru lane. From the backseat of the car, I hear it…

Inside. Inside, please. Inside, Mama. Inside. Want sit inside.

My boy knows what he wants and can tell me. My miracle child, who was once able to communicate only  through self-injury and tears, can make himself understood without endless prompting or cajoling! The magnitude of this milestone, years in the making, does not escape me. As I pull into a parking space, I am rewarded by the sound of laughter as Nik claps his hands in delight. Clearly, his success does not escape him either.

Once inside, Nik proceeds to use his device to tell the barista “Want lemon cake.” I admonish him to use his nice words; “Please,” he says in the quirky digitized monotone I have come to love. In this moment, the endless hours of teaching, prompting, shaping and modeling fade from my mind as I watch the naturalness with which he connects with the girl behind the counter.

For a fleeting moment, I tell myself I might consider buying a pony if he asked.

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I’ve always been a cat lover. It started long ago when my four-year old self woke to find the family cat having kittens– in my bed, under my covers! A series of family pets including dogs, cats and horses followed; the cats were always my favorite for their silent and fluffy unconditional love to an often lonely little girl.

In college, my beloved Tasha chose me as hers by climbing up my pant leg and forcing her kittenly affections on my cheek.  We had seventeen years together including several moves and many relationships. Tasha used to run and hide from all my boyfriends until my husband came along. I’m convinced she was waiting for the “right one” to come along before she finally succumbed to old age and kidney failure in my arms in the middle of the night mere weeks before my wedding.

Shortly after the wedding, my heart still ached with the loss of my Tasha and I wanted to find another cat to love. I was so sure it would be a boy because, well, no other female cat could possibly replace Tasha in my affections. Turns out I was both wrong and right and ended up with not one cat but two — a boy, Rascal, and a girl, Pandora.

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Pandora was a feral rescue cat we adopted when she was about four months old. She was, and still is, an incredibly affectionate girl who loved nothing more than snuggling on my lap. When I was pregnant with Nik, she would lie on top of my belly and rest her head against my heart. I was on bed rest during my first trimester, so there was lots of bonding time between Pandora and me.  In hindsight, I think she was bonding with the baby growing in my belly, too. Though, in typical cat fashion, I suspect she was telegraphing messages of “I rule the castle and don’t you forget it, peanut!”

Nik was born three months early. The devastation of coming home from the hospital without my baby, the worry and waiting for the other shoe to drop because he was so fragile and his health so precarious, was made bearable by Pandora’s faithful and patient love. As I sat on the sofa, night after night, sobbing uncontrollably, she would silently nudge her head into my before wiggling her way onto my lap. It didn’t take long before she would drape herself over my shoulder –offering herself up as a giant furry tissue to catch the torrents of my grief.

When Nik came home from the hospital, seven months later, Pandora immediately bonded with him. Nonetheless, I had to constantly monitor her; being a slightly anxious kitty, she had a habit of indiscriminately chewing through things. Like the lamp cord she chewed through on one of the many days I spent at the hospital with Nik. I was worried she would try to bite through the oxygen tubing which trailed around the house, keeping Nik breathing freely. To my wonder, she never tried; it’s as if she knew that Nik needed her to watch over him.

When Nik napped, Pandora would circle a few times and lie down facing him. When he was awake, despite his inability to do more than sit in his bouncy chair or lay on a blanket, she would sit across the room watching warily. She kept her daily vigil faithfully and slept outside his room each night.

Shortly after we moved back east, when Nik was about fifteen months old and no longer on oxygen, the routine was pretty much the same. No matter where in the house Nik was, Pandora was almost always somewhere she could keep watch over him. Nik wasn’t yet sitting or even rolling over so she stayed relatively close.  Because she wasn’t allowed to sleep in our room (Niksdad has allergies) and she wasn’t allowed in Nik’s room for fear she would get into the crib with him, Pandora continued to keep her silent vigil outside Nik’s bedroom door each night.  When we went into Nik’s room to start the pump for his overnight feeds, Pandora would accompany me into the room and rub against my ankles until I picked her up. “See, girl, our baby is fine. He’s sleeping. Go lie down now.” And off she would go to wait in the hall.

I always thought she would have made an excellent mama cat.

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The sounds of frantic meows at my bedroom door woke me from my already light sleep. “Pandora,” I moaned, “shut up! You’ll wake the baby!” I hissed and threw a shoe at the door in an attempt to scare her away. To no avail. Her meows became louder and more insistent. I got out of bed and threw the door open to shoo her away. She swatted at my leg and head butted my ankle and continued to howl. Something wasn’t right, but I couldn’t figure it out.

I picked her up to soothe her but she jumped out of my arms and darted to Nik’s door, pawing and meowing. Annoyed now, I scooped her up and shushed her. “Fine, you want to see the baby? He’s sleeping. He’s fine.”

When I opened the door, my heart stopped. I remember suddenly screaming as if the house were on fire.

Nik had not ever been able to roll over independently; it was an emerging skill we were working on and he could only roll in one direction. In his sleep, he must have rolled numerous times: the feeding tube was wound completely around his neck. The increasing tension on the tubing had pulled the pump stand over so far that it lay precariously perched on the very corner of the crib. One more turn or a slight bump would have sent it falling to the floor, tightening the tubing around Nik’s neck. Nik was asleep through all of this; he didn’t make a sound.  I wouldn’t have heard anything through the baby monitor which sat next to my pillow. Were it not for Pandora’s utterly uncharacteristic howling in the middle of the night, we would have never known there was anything wrong until it was too late.

Guardian angels come in many incarnations.  Nik’s has the softest fur and the sweetest meow.

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Editor’s note:
Obviously, that was the end of Nik’s unattended nighttime feedings, but Pandora continues to keep her vigil to this day. During the years in which Nik woke screaming in pain every night, Pandora was always right there at my feet, waiting until all was calm and I would hold her over the crib to stroke her gently and show her that our baby was okay. Even now, she waits outside his bedroom door until he has gone to sleep.

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I am grateful that today is Friday and the school week is over for Nik. This screwy schedule of so many days off in November (crazy school district schedule!), plus the hurricane, plus the election… Nik’s whole sense of time and place is way off.

Mine, too, little buddy. Mine, too. It’s time for some decompression and relaxation!

May your weekend be as stress-free and rejuvenating as possible!

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Sorry to disappoint, my friends. I don’t have a pithy, meaningful or otherwise significant post to share tonight. The demands of the day and the need to prepare for an early morning appointment with Nik have me recognizing my limitations and acknowledging that I need to take care of myself; Nik and I will be on the road at sunrise and, though he’s grown and changed in so many amazing ways, his needs still require a great deal of logistical planning.

I am grateful for my ability to recognize and honor my limits. Tonight, I will don my Oxygen Mask and bid you sweet dreams until tomorrow.

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What she said

Because, really, I wish I could say this half as eloquently as Jess did… just go here and read her moving tribute to our veterans.

With gratitude for those who serve or did serve in our armed forces.

267249-9-war-memorial

War Memorial (photo by Luigi Clemente)

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