Words into action

The natural patterns and rhythms of verbal communication do not come naturally to Nik. Despite the fact that he’s had his speech device for three-plus years now, he still struggles with parts of speech and being able to put words together in a way which is understandable to “outsiders.” It’s just a part of how his brain is wired. Much of Nik’s default method of communication is “telegraphic,” meaning that he will use one word for multiple meanings and that meaning is figured out by the listener who must either be psychic or must elicit more information to determine the context in which Nik means them.

For example, Nik may say “Park Daddy” to mean any of the following:

I want to go to the park with Daddy when he gets home from work.

I went to the park with Daddy this morning.

Will Daddy take me to the park?

I like going to the park with Daddy.

In speech therapy, Nik is working on using “action words” to go with the things he labels. For example, when he says “Park Daddy,” Ms. K will ask what actions he can do at the park– swing, climb, etc. They work on pairing nouns with verbs and reinforcing structure and the relationship between them. It’s a painstaking process which needs to be supported consistently– not just in his twice weekly sessions with Ms. K.

Nik loves to chatter to me as we drive along to the store after school or on the weekends. I try to encourage and coach his language use all the time. Lately, though, I can tell that Nik finds it annoying. I can’t say I blame him; who likes to be grilled all the time, right? Sometimes, he flat-out refuses to participate and changes the subject to avoid the work. Others? He plays me like a fiddle and I don’t even realize it until it’s too late!

* * * * * * * * * *
On the way home from the store yesterday, we shared a small bag of chips. As we drove along, I doled out chips every time Nik asked “more chips.”
“Nik, what actions can we do with chips?”
We’ve done this exercise often enough so I knew, from the silence in the back seat, that he was processing the fact that chips are food and you can eat, bite, or chew food.  Uncertain if I would need to prompt him with possible answers, I asked again.

“Nik, what is an action we can do with chips?”

I heard the quiet beep of Nik activating the screen on his device to answer.

“H-O-L-D bag.”

Well played, son. Well played.

* * * * * * * * * *
I promised Nik we would go to McDonald’s after his therapy this morning. He was extremely excited.  We don’t dine there with any remote degree of regularity; I try to save it for special times (or travel emergencies) and he loves going inside to eat.   On the way to see Ms. K, Nik and I were discussing what he would have for breakfast. He suddenly got stuck in a loop and began to perseverate on eggs.

“Eggs, eggs, eggs, eggs…”

Doing my best to help him break out of it, I tried to expand the language. “Nik, what can you DO with eggs?” I asked.

“Eggs, eggs, eggs, eggs…”

“Nik, there are lots of things we can do with eggs, right? Eggs are food and we can…” I began to sign eat, bite and chew as possible clues for him.

“Eat, eat, eat”  he replied from the back seat.

“Very good! That’s right. We can eat,” I signed. “Or we can Buh…” as I signed the word bite and made the sound of the letter B.

“Eat, B-”

I could tell he was about to spell it out and I started to nod in approval.

“…A-C-O-N. Eat bacon. Eat bacon.”

Yep, I’d say he’s got the important stuff down pat.

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Just another ordinary day

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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Transfixed

My child’s life has been wrapped up in hospitals since the day he was born. Ironically, it’s the place he is most at ease; he knows the equipment and routines. He’s not afraid to tell a doctor they didn’t look in his ears or to ask the phlebotomist for her tourniquet. (Relax, our answer is always a resounding NO!) He knows how to work the otoscopes and the blood pressure monitors, the pulse oximiters and the electronic scales and where they keep the disposable caps for the thermometers. It’s all just second nature to him and we don’t give it much thought.

We’ve walked this hallway what feels like a million times through the years— many of them as recently as this past week. The pictures on the walls haven’t changed, the faces are pretty much the same. It works for us– for him, the routine, the predictability and familiarity. He knows Ms. M at the coffee shop who waits patiently as he orders his “cookie chocolate” with his speech device. Mr. John, the valet attendant, who always gives a smile and a fist bump and who never, ever makes it a problem if we want to play on the playground even after the car arrives. My little ambassador knows the nurses in varying departments by name and remembers the color of the stethoscope everyone wears. Dr. C? Red. Dr. D? Black with tape. Ms. T? Green…and so on.

Today, we’re winding down from a very long morning of appointments on the heels of a week’s worth of appointments and disrupted routines. I can tell he’s off kilter and out of spoons. I’m kind of feeling the same way. It’s been a hard break at the end of the school year and he’s missing not only his routines and outlets, but his very best school friend.

Him: Marcus, today
Me: No, baby, not today. (*crack* there goes my heart breaking just a little bit more with each repetition of this exchange)
Him: Marcus, school tomorrow.
Me: No, baby, not tomorrow.” *crack*
Him: Maybe.

My beautiful, loving boy. So hopeful. So resilient.

He stumbles against me periodically as we walk, loosely holding hands; I can feel his weariness. He looks longingly at the wagons of the other children going by. I silently berate myself for not getting a wagon for him; he’s tough but even he has his limits and his legs have been aching so much lately. If we weren’t in the home stretch heading off to get our requisite cookie for the long drive home, I would absolutely get a wagon.

He stumbles again and I feel him pull away from me, his hand slipping from mine. Suddenly, I’m on high alert as he darts to one side. Instantaneously, I scan the area and evaluate the possibilities of where he is heading. I see an office door tucked into the wall up ahead and dash to cut off his inevitable entry. I beat him to the door which wasn’t his target after all. His destination was something I hadn’t even contemplated.

He stops suddenly and cranes his neck upward to look at one of the many images which have become so much a part of our, my, unconscious mind. His spindly arms reach upward toward the mural – almost in supplication. One hand on the image, he is utterly transfixed. Relief washes over me. “Nik, what on earth—“ I begin. Then, I see the image on the wall. I am unable to breathe and I feel slightly dizzy. I am suddenly sucked into a vortex. Unbidden, hot tears course down my cheeks; I couldn’t stop them if I tried.

I watch as his delicate fingers reach up to touch the face of the child in the image—an infant on a ventilator. The woman – I’m assuming she’s a nurse because of the scrubs, but also because of the tender way she is cupping the top of the infant’s head—looks nothing like any of the nurses who spent so many months by our side all those years ago. Yet, suddenly, I can see their faces and hear their voices.

I can hear it all so clearly—the hum and whoosh of the ventilator, the sounds of the automated blood pressure machinery. I can hear the sounds of the gentle crooning as they shushed and soothed sick babies. And the alarms—oh, God—the alarms. I can feel the sudden, urgent energy in the room when something went terribly wrong. And the tears and stricken silence following the unthinkable.

I don’t think about those things often—seldom consciously. Yet, I can’t help but wonder at how deeply they have been etched into my psyche. How little it takes to trigger the emotions and memories.

Nik’s finger traces over the image of controls on the ventilator. He turns his head to me as if in question, but I don’t know what he’s asking. Could he possibly remember? He was so tiny, so fragile—weighing barely more than a pound of butter. Is it even possible? I can’t help but wonder. Is his sudden, reverent fascination with this particular image on this particular day because of an offhanded remark I made to a nurse today about how little he weighed and how long he was in the hospital? Does he have those visceral flashbacks, too?

I can point to specific habits and traits he has developed as a direct result of his 209 days in the NICU—habituation they call it. The way he likes to fall asleep all scrunched into a ball with his feet and head pressing against something? That’s a vestige of all those months cocooned in a bendy bumper. The way he can sleep through almost ANY sound, but cannot sleep alone in his room. The way he constantly needs music in the background of whatever it is he is doing. But, never, before this dizzying, heart aching moment, have I ever suspected he had more than hazy awareness of his time in the hospital.

I have kept my own memories and emotions so neatly compartmentalized that I simply assumed he had no real memory of any of it. It’s been easier for me to cope with my own waves of remembrance that way. The thought that he might have powerful conscious memories of his difficult sojourn tears at my heart. If I, at nearly 50, still cannot process it all without falling apart, what must it be like for him? How does he process all that happened to his tiny body and tender spirit without the layers of cognition and understanding?

I don’t have any nice neat wrap up to this story; it’s unfolding as I write. I’m processing as I go. Apparently, so is my son.

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Doing the Write Thing

A milestone many, many years in the making. It’s still a work in progress (especially the letter k), but it’s finally happening!

My boy is so proud of himself, so happy when he writes his name. It’s his new favorite thing to do and he does it everywhere — with his fingertip on the side of the bathtub at night, on the playroom walls, tracing his name on the glass of the storm door as we wait for the bus. When he thinks I’m not listening, I can hear him softly trying to sound out the letters one by one. “Mmmmm, ihhhhhh, kuh.” (He cannot articulate the sound of many letters, including N.)

Waiting for the bus this morning:

“What does that say, sweetie? What does it spell?”
His nimble fingers fly to his device to answer — name.

He knows it is his.

“That’s right, love, it’s your name. Can you say your name?”  Knowing full well he cannot articulate the actual sounds into one fluid word, I have no expectation of a response, but he tries; he always tries.

Today, however, he voices an unexpected and enthusiastic “Guh!”

Startled, I smile widely and feel the sting of tears in my eyes.  He knows he has surprised me and his face splits into an infectious grin as he claps with glee at his cleverness.

My boy is nine. I don’t expect that he will ever use his laborious manual writing for more than signing his name, but I am so incredibly proud of his efforts and his perseverance; both are –in spite of the continuing state of flux of his health and his daily challenges– such constant facets of my amazing child.

The only things more constant are the love and pride I have for him.

 ******************************

Today, Wednesday, March 6, people around the world will unite their communities to Spread the Word to End the Word®, as supporters participate in the 5th annual ‘Spread the Word to End the Word’ awareness day, aimed at ending the hurtful use of… the R-word (“retard(ed)”) negatively impacting people with intellectual and developmental disabilities (IDD). Language affects attitudes. Attitudes impact actions. Special Olympics and Best Buddies International encourage people all over the world to pledge now to use respectful language at www.R-word.org and build communities of respect and inclusion for all people.  I hope you will add your voice in support of these efforts. Your life may not be graced by a loved one with an intellectual disability, but I am sure you know someone whose life is touched on a daily basis. The next time you hear someone using the term as a slur, please speak up. For your friends, your loved ones… for my child.

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What we didn’t know then

You may have noticed that my writing has fallen off here. Quite a bit. Yeah, I know, I know. I don’t need to beat myself up about it, it’s my blog, blah, blah, blah.  The truth is, I haven’t been writing because I haven’t known how—or what—to share about the changes happening with my son. The words are jammed up inside my head, warring with the feelings inside my heart. I have discarded multiple drafts in an effort to find the words I need. I wrestle with what I want to say and how much I feel comfortable sharing. I still don’t have the answer; I am outside my comfort zone.

The irony is not lost on me.  Ever the consummate over-sharer— not afraid to tell my story to anyone who will listen, I have struggled with what to reveal. I’ve been grappling with finding my own truth and having to confront my own biases all while trying to find a new equilibrium. I have been forced to examine and to reframe my vision for the life I thought we would have.

The life I thought he would have.

It’s very much a work in progress as we continue to redefine, reshape and work our way through the morass of emotions and information.

*******

When my son was born extremely prematurely, he was substantially smaller than his gestational age and had a number of identifiable health conditions in need of immediate treatment –either with medications or surgeries. Life—mine and his—became about surviving another day, making it through another crisis.

Over the course of his 209-day hospital stay, and even after he came home, the focus was on making it through; through another season, another health crisis—whatever curve-ball life threw our way.  At that point in time, there was no way to predict how the cards would fall and no way of knowing what his future might hold.  Many professionals told us there were still so few children like ours who were old enough to really have enough data to be able to predict with any degree of certainty. So, we simply hunkered down and did the best we knew how to do with the minimum of supports we had. All we knew was that we were not quite out of the woods but not quite fully in them.

“When we let go of hope fear wins.”

Through the years, there have been so many well-intentioned people –from health care professionals to total strangers—who confidently told us not to worry, our son would surely catch up. They patted our shoulders in sympathetic displays and told us stories of their cousin’s friend’s uncle’s daughter or their neighbor’s son who were “born early, too; they caught up by the time they were in elementary school.”

When you don’t know what you don’t know and the prospect of knowing certain things is, well, scary, it’s all too easy to want to believe the well-wishers and the miracle-sellers who predict your child’s miraculous growth and feats of development. So, you put on the blinders and tuck your chin down and simply soldier on—hoping for and working toward the best, whatever that turns out to be. In the absence of even a hint at the longer view, we simply clung to hope and pushed our worries aside, taking it a day at a time, an issue at a time.

When our son was ultimately diagnosed with PDD-NOS, it gave us something to hold on to and provided a new context through which to view everything else. As time progressed and some of the more emergent health issues began to resolve or remained stable, we hit a kind of developmental sweet-spot.  Our son began to make tremendous progress and was rapidly gaining many skills which had been so severely delayed. In a seemingly short time, he blossomed from the child who couldn’t even sit up or roll over and who relied on a tube for all his nutrition, to a child who could walk and run, climb and eat, and who had taught himself letters and was showing signs of spelling and early reading skills emerging.

With that swelling surge of hope, we began to really push for supports and look for signs of academic progress.  Some early literacy skills were emerging, multiple word sentences constructed on his speech device – there were glimpses; glimmers of dazzling progress.

Until there weren’t.

Which is where we have been for a while now. I’ve struggled to understand for myself and to try to articulate for others, the degree to which things have stagnated; there’s been some significant regression in some areas. It’s best summed up in a brief conversation I had with our developmental pediatrician this week.

ME: So, if I have three different evaluations, done by two different entities over a two-and-a-half year period – and not shared between each other—and they all show pretty much the same thing, including almost no change over time…

Can I pretty much assume that (1) my son doesn’t test well and the tests aren’t completely accurate and (2) that there’s probably *some* kernel of accuracy there which speaks to a larger issue? The one we think we are seeing?

DR: (wrinkling her nose in a sympathetic grimace, nods her head) Yeah, I would make that leap. Let’s make an appointment to talk about it and find a new way forward.

Hope is important; it is vital. But so is the ability to see beyond the heart’s desires, to peel back the thin veil over your fears and really look at what is in front of you. I’ve been in that process for a while now –none of this is new data; it’s just data my husband and I have finally been ready to see in a different light.  The process of getting to this point has been emotionally messy. It’s been painful to confront our own prejudices.

For years we have both felt like we were sort of straddling two different disability worlds and not feeling like we solidly belonged in either one. Was our inability to settle in, to identify with any one group, born of denial and shame? Why is it so much easier for me to say, publicly, that my child has “mild cerebral palsy and autism” yet I cannot bring myself to declare just as casually that he is intellectually disabled—mentally retarded?  (Yes, I know the term really isn’t used anymore; that’s my point—I’m calling myself out on my own biases and misperceptions.)

Different words will not change my beautiful, smart, funny, loving child. Nothing will.  And yet, the truth of those same words cuts me to the bone, laying bare the fears and grief I’ve held at bay for most of my son’s life; I am the one it changes. I am the one those words challenge.

I hope I am able to meet it with half the grace, determination and heart with which my son has lived his entire life.

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Season of change

Nik’s IEP is next week. I have been in constant contact with his teacher (who gets him, thank God; she really gets him), writing goals and summaries, researching and ranting to friends about “stupid OT’s” who think my kid needs a handwriting goal… again; Nik’s teacher will set her straight.

A sample of Nik’s ability to trace his own name after 8+ years of occupational therapy. There are reasons I keep pushing for assistive technology, folks!

As far as IEP’s go, I think this one shouldn’t be too bad; Nik’s got a really great team working with him this year. They get him; they have seen the funny, smart, affectionate child I see. They know him well enough to recognize when he is having an off day which is not representative of his potential.

Still, I’m not going to lie; the anxiety is really running deep over this one. We are making big changes, big requests and, possibly, even adding some new letters to the already overflowing alphabet-soup of diagnoses and classifications which are a significant part of Nik’s educational record. We’re losing some services but gaining others…for now. We’re going to be asking for a minimum two-hundred percent increase in one of his services; I expect a lot of push-back on that (thus the reading and research). Over all, though? I’m hoping for good things and easy resolutions.  And yet…

He’s nine. NINE. The gaps between my child and his peers are growing so much wider and the fears I have for my his future are taking root ever deeper in my spirit. The emotions are hard to push down.

I see-saw between hope and despair, manic laughter and tears.

My fingernails have all been cut off to keep me from biting them to the quick.

I may or may not have indulged in some emotional eating lately.

It feels like so much is at stake in this particular meeting. This particular year. It feels pivotal and overwhelmingly, intensely…huge.

It’s too much. And I am foundering.

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Bowled Over

Yesterday was a pretty tough day for my son. He’d been looking forward to the country-wide Special Olympics bowling event for weeks. His excitement was mostly about riding the school bus and seeing “friends” with whom he could play his wordless hand-clapping game. His expectations and the reality were so very, very far apart.

Don’t get me wrong; we love Special Olympics and all that it has opened up for Nikolas. It gives him an opportunity to learn new skills, to experience new situations, and to practice some of the very important listening and participation skills which challenge him greatly on a daily basis. I appreciate that he can participate in whatever manner meets his needs dictated by his physical limitations in both motor and visual processing and coordination. Frankly, I also love that Nik is often not the most obviously impaired child present – as it so often feels when we are at the park or even within Nik’s own wonderful classroom setting.

So, why was it such a tough day, you ask? Simple, really…

Take approximately 200 kids, each with an accompanying teacher, paraprofessional and/or nurse, add a family member for every other kid present, the staff and volunteers from Special Olympics, the requisite number of bus drivers to transport those children and school professionals from four different school districts and pack them all into a 32-lane bowling alley for three and a half hours.  I don’t have many sensory issues of my own, nor do I have any impairments which make it exceptionally challenging for me to process visual and auditory input like Nik does, but I can tell you that my brain was still buzzing from the tension more than six hours after the event was over.

Nik gets ready to bowl with the help of a ramp and his friends.

Nik didn’t even make it through the first of two full games before he was spent.  He went from a bubbly and exuberant boy when they first started, to a child who could not even pull himself together after the first five frames of the first game. He simply shut down. DONE. No amount of coaxing or cajoling would work. In fact, it made it worse.

If I had the benefit of today’s hindsight yesterday, I would have simply taken Nik home. It was shades of our Special Olympics soccer experience of a year ago when Nik was so utterly overwhelmed by the sheer volume – both in terms of people and noise, that he could do no more than throw himself on the ground and wail his outrage and frustration. Yesterday was deceptive in that he did not throw himself on the ground, but he made it crystal clear he was not going to bowl any more. Instead, we spent hours walking up and down and taking some breaks to sit and drink some soup or nibble at his bagel.

Nik has, clearly, had enough fun for one morning!

Given how crummy he feels right now between his infected ears and sore throat? It’s a miracle he didn’t throw himself on the ground and weep and rail at the world; I’m not so sure I wouldn’t have in his situation. Progress.

But at what cost? I watched as my beautiful boy flitted from place to place like a hummingbird –unable to fully alight and be comfortable or content for more than a flash before the compulsion to move on took hold. We walked and wandered. We tried to eat lunch and sing songs in the semi-quiet rooms near the back of the bowling alley. Still, it was all too much. I could see the perseverations rising like flood waters and I felt helpless to figure out where and how to draw the line. I wanted to hang in until the end so that Nik could get the ribbon for which he had worked so damn hard. He may not have finished his event, but he gave it his all and I was proud of him. I wanted him to hear the crowd celebrate his achievement, too.

As the awards were being given out, Nik’s para, Ms. M, and I realized that something was wrong; Nik’s entire group had been given their medals and ribbons and were making their way toward their school groups. There we stood, confused.  I know Nik didn’t understand the ramifications of what was happening, but Ms. M and I both did. I felt hot tears prick my eyelids. Ms. M adores Nik like he was her own son; she asked me to stay with Nik and strode off like a mama bear on a mission.

Ms. M returned triumphant but disgruntled. When Nik hadn’t finished his first game, a volunteer removed his name from the roster. On paper, it was as if my boy had never shown up, had never given every ounce of heart and energy he had. As Nik sat slumped against my shoulder and my heart was, figuratively speaking, on the floor wailing in frustration and outrage, Ms. M. simply made it right. (It’s one of very many reasons I am so grateful she is working with Nik!)

When the announcer called Nik up to get his ribbon, Nik was all smiles and fist-bumps with the police officer who gave him his ribbon. I, on the other hand was all sniffles and quiet tears. The oversight in such a setting where it’s all about inclusion, left me rattled.

My boy works so hard to make his way in a world which neither understands him nor fully embraces him for how he is right here, right now. As far as I’m concerned, he deserves a ribbon every day.

Emotional crisis averted, we made our way to the opposite end of the bowling alley to find Nik’s teacher and the three classmates who had participated in a different division. It was like watching a family reunion; Nik suddenly sprang to life and bubbled over with joy at seeing his friends.  They were also over stimulated and tired from the long morning. One of the boys can get very physical when he is in that state and I worried when Nik grabbed his hands to start to clap with him. I admonished Nik to use his “words” (his speech device) to ask the boy if he wanted to clap.

The way Nik spelled everything out was as if it were one long, breathless request. “Marcusclapplease.” Marcus has always made me slightly uncomfortable because he is so much older and bigger than Nik and has no concept of personal space. He also has a very flat affect so it’s hard to tell what he’s feeling or thinking at any moment. I watched, somewhat leery, as he put his hands up for Nik to clap.

Marcus pulled his hands away very suddenly and mumbled “clap done.” Nik persisted and Marcus tensed. I knew Ms. M and Ms. C (the teacher) were watching and ready to intervene, yet they didn’t seem at all anxious about what Marcus might do. Marcus reached out and put both of his hands on Nik’s shoulders and slowly pulled him to his chest. I held my breath as I watched in awe; Marcus slowly bent his head down and, with a tenderness I could not have imagined he could express, kissed the top of Nik’s head in the most affectionate and brotherly gesture I have ever seen. So simple, yet so profound.

The sting of the three-plus difficult hours which had come before this moment suddenly melted away. This…connection; this was the real prize for my son who gives his all every single day. This was what he came for.

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Today You Are Nine

Nine? How did that happen? In the blink of an eye you went from my fragile little micro-preemie –fighting for your life over and over again, to my funny, engaging, affectionate monkey!

We still have so many miles to go in this journey of ours together, so many things to learn and so much teaching to do in the world around us. But the one thing I hope you will always, always know is how very much you are loved. How very much you are cherished and respected. And how none of that is affected one iota by the things you can or cannot do in this life.

Happy Birthday, baby. You are my life, my soul, my heartbeat. You take my breath away every single day. You fill me with pride and wonder, perspective and faith. Though our road together has been so very challenging from even before your birth, I wouldn’t change a single bit of it if it meant you were any different than you are today.

I love you so very, very much.

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A Month of Gratitude – Day Fourteen: Little Big Things

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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Month of Gratitude – Day Twelve: Pandora

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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