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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Reinvention

Who am I?

Before my son was born, I had a career.  It wasn’t a stellar, glamorous career but it was steady work doing something I’m good at, something for which I was appreciated and valued and which gave me a certain measure of latitude in my days and weeks.  When I became pregnant, I was a very high-risk patient due to my age and my reproductive history of miscarriages and infertility.  I was put on “modified rest” and highly restricted activity —definitely no thirteen hour days commuting into the city, managing the stressful details of running an office and juggling the demands of multiple executives.  Through my entire first trimester, I managed to stay in contact with my office and keep things running as best as I could through conference calls and emails.

At the end of my first trimester, my new obstetrician gave me the thumbs up to return to work.  I was relieved and felt a renewed sense of purpose each day.  My plan was to return to work just a few months after the baby was born.  Life, as it turns out, had other plans for me.

Nik was born at twenty-seven weeks.  Because of a previously unknown uterine anomaly, his growth had been restricted and he was the size of a 23 or 24 week fetus.  He weighed in at a whopping 530 grams at birth —including the breathing tube and apparatus to hold it onto his impossibly tiny face.  One pound, two and five-eighths ounces of determined fighter.  He turned my world upside down in ways I haven’t even begun to identify!

Two hundred nine days in the NICU, countless operations and ongoing interventions.  It became glaringly clear that my work days were over for the foreseeable future.  Nik’s needs were too great and the cost of childcare too steep.  My fulltime job became “mom”; my new boss had me wrapped around his little finger.  Somewhere along the line, I just assumed that I would return to the work force eventually —once Nik was “healthier” or when he went to school.  My husband and I had discussed the fact that we probably couldn’t survive for long on just one income.

Fast forward six years.  Many twists and turns in our journey have led us to a new home, a new career for my husband —who is about to return to school to advance that career further— and the unexpected decision to home school our son.  His needs are still very great and the cost of specialty care is prohibitive.  We cannot afford a private school but I am no longer able to juggle the constant demands of his safety and education with running a household, being a wife, being a mother and trying to make it all work.  Something has to give.

That something, historically, has been me.  Tonight, as my husband and I discussed the next stage in his career development, it finally hit me; I’m not ever going back to work in the way I once imagined.  My husband’s school program will take another two to two and a half years at which point I will be nearly fifty.  Ten years out of the work world.  Ten years out of the loop of, well, everything that doesn’t somehow revolve around parenting a child with multiple disabilities or being a wife.  Make no mistake, I do not devalue those things at all —they are a vital part of who I am.

However, tonight, it felt like the paradigm of my future that I’ve held for so long simply vanished in a puff of smoke.  I am left feeling lost.  Who am I? What will I do?  Who do I want to be outside of my roles as wife and mother?  Is this all there is?

I don’t have any answers yet; I suspect I won’t for a long while.  But I do know that I need a plan for my here-and-now to make sure that something anchors me, fills me up.  Something gives me a sense of self outside my family, a sense of purpose.  Something to look forward to that is just for me.

They say necessity is the mother of invention.  I say reinvention is the necessity of motherhood.

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Obstruction

I don’t know if I should be comforted or frustrated by the knowledge that my instincts were right about the ENT.  As Murphy’s Law would have it, Nik’s ear looked great and his tonsils seemed fine when the doctor got a good look.  Well, hell, I’m not a doctor but I’m pretty sure that even I know that a week on heavy-hitting antibiotics might have some slight ameliorating effects.

The bottom line is that the doctor doesn’t think the tonsils are the problem and doesn’t want to remove them; he said he thinks it won’t give us the results we are hoping for and may make Nik’s oral motor issues worse.  Now, here’s where the good doctor and I part company because I’m pretty sure he’s looking at this strictly from his little ENT-corner-of-the-world view while I am looking at the big picture.

To whit:  Nik has a significant history of both cardiac and pulmonary disease or insult.  He was a history of Failure to Thrive (FTT) and is still in the third percentile for both height and weight for his age with a body mass index of less than fifty percent.  This child who used to sleep ten to thirteen hours per night without incident has not slept well in three years; the average amount of sleep Nik now gets is eight hours total —broken into three, sometimes four, segments.  His longest stretch of sleep these days is about three hours.

My once placid and even-tempered child is now a whirling dervish with a recent diagnosis of ADHD.  I’m not sure I buy that, really.  Not as long as there may be any underlying pathology which may be treatable.  And the long-term cost of doing nothing but medicating it and hoping it resolves itself is too great.  The threat to Nik’s overall health and development is not insignificant; the toll on our family as a unit is beginning to show.

I’ve already got calls in to our fabulous pediatrician; I know I can count on her to go to bat for us if we need to be referred outside our state for a second opinion.  Yes, one drawback to living in a small state is that all the pediatric otolaryngologists practice in the same facility.  Apparently, they also all share one opinion among themselves depending on who’s on the schedule.  But I digress.

Nik’s insurance demands that we exhaust all possibilities before they will deign to authorize an out-of-area office visit.  That means our next step is requesting a sleep study.  Call me jaded but I like to think of it as a sleepless study; let’s face it, there’s no way anyone can sleep “normally” when they’re in a hospital and wired to all sorts of machines —especially gadget boy Nik.  But it’s one of the hoops we have to jump through before we can make any real progress.

Stay tuned…

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Same old same old

Sorry, nothing new to share. Unless by “something” you mean my son not sleeping for yet another night and finally hitting the wall of exhaustion so hard that he passed out in my arms this morning.

He slept for two hours while I enjoyed the quiet.  My brain is fried, my nerves are shot.  I’m hoping for a break soon.

Watch this space for better news —or more coherent writing— soon.  I hope.

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The clonidine chronicles, part 1

Last night’s trial of clonidine was, well…

I’ll let  my posts on Twitter tell the story:

The aftermath of four consecutive nights without sleep (well, three years, really, but we have a few good nights once in a while) has been brutal today.  This is, by far, the worst stretch ever for us.  Nik’s ability to handle even the slightest deviation from routine or expectation has led to a series of frighteningly explosive meltdowns.  Nik’s sweet little face is covered with self-inflicted bruises and he looks like he was on the losing end of a barroom fracas.

We opted to hold off on the clonidine again until we speak with our neurologist and get a clearer plan in place and set some parameters about how long we need to give the clonidine before we call it a bust.

We’ have gotten some good feedback and suggestions from many sources about possible medications to explore.  At this point, though, we are very limited in what we can give Nik because of his swallowing difficulties.  If it can’t be crushed or chewed, mixed in with food, or doesn’t come in a liquid form we can’t try it with Nik right now.  This rules out some of the medications we’ve heard so many good things about, relatively speaking.

Niksdad and I suspect there is more at play right now than just the sleep disorder and are working hard to get to the bottom of whatever it is.  For quite some time now, Nik’s had chronically inflamed lymph nodes, enlarged tonsils (though no sign of active infection), and chronic fluid in his ears —sometimes resulting in infection, sometimes not.  We suspect that the pressure, the shifting fluid, the discomfort of swelling in his throat —all of it— is exacerbating the problem by causing some obstructive sleep apnea.  Not to mention the intermittent and unpredictable changes in Nik’s eating and drinking patterns.  We see the ENT on March 2 and will be discussing a tonsillectomy.    Until then, please send good thought and prayers for sleep. 

Oh, and send coffee.  Lots and lots of coffee!

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Because I said I would

Wow, this getting back into the habit of writing is hard.  It doesn’t help that I am the world’s worst procrastinator. (Um, does that actually make me the best?)  It is so much easier for me to flit back and forth on Twitter and Facebook.  Little snippets of conversation between Nik’s multitude of appointments, meals, snack, school work and play time.  Of course, that just feeds into the whole short-term memory deficit…

So, I have nothing really moving or important to share now.  Life is looking moderately steady —including the consistent lack of sleep each night.  Nik keeps waking at about the same time and then waking/sleeping in these three-hour cycles.  Niksdad and I have all kids of questions and half-theories about what could be causing the sleep disturbances.  It may or may not be related to Nik’s recent (as in, this winter) development of Reynaud’s Syndrome.  At least, that’s what we’re calling it for now; he has all the classic symptoms but hasn’t been diagnosed yet. That appointment is at the end of this month.

Meanwhile, knock on wood, Nik has been moderately healthy for the past month.  An occasional need for Mucinex here and there but no real illness. That in itself is progress. He has had these weird episodes of extremely swollen tonsils without infection.  We’re talking so swollen that you can actually see the tonsils touching the uvula. It does explain the intermittent food refusals we’ve seen recently, too.  I mean, who wants to eat with all that stuff blocking your throat, right?

Tomorrow is another EEG for Nik.  I’m not sure if I want the neurologist to find evidence of seizures or not.  On one hand, it would explain some of the odd tics, facial expressions and behaviors we’ve seen in the past couple of months.  On the other hand, it would mean that Nik’s seizures are back.  Wow. That was a hard sentence to reread “…Nik’s seizures are back.” Yup, I think I hope the EEG is negative after all.

That’s the funny thing about this parenting of a child with so many unknown and overlapping medical and developmental issues, you never know which team to root for , so to speak.  Does having a diagnosis mean the problem goes away or is at least treatable? Not necessarily.  But, is the not knowing less scary than the big, scary possible diagnosis?  It’s a damned-if-you-do-damned-if-you-don’t kind of existence sometimes.

So, I try hard not to focus on those things until the last possible minute —like on the way to the doctor’s appointment or the lab.  (See, the procrastination can be a sanity saving measure sometimes!).  But the truth is, the worry is always there.  And it’s not just about the medical stuff.  School, communication, and so many arenas.  It gets paralyzing.  Overwhelming sometimes —especially when it all snowballs.  I just shut down.  Maybe that’s why I stopped writing for so long, too?  It’s so much easier to comment on someone else’s situation than it is to face my fears and anxieties.

There are a lot of those lately.  So many I can’t even articulate them yet.  But I will.  Because I said I would.

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Our week in review

Monday: Nik got a new diagnosis which we are still processing and will be discussing plans with the doctor if/when we see her on Tuesday.  Nik choked on a magnet and I performed the Heimlich on him.  Nik fell off the window sill and smacked his chin pretty hard.

Tuesday is a blur. 

Wednesday:  Nik was a tad “off” and felt like he might be running a fever.  He developed a slight cough and a bit of laryngitis.

Thursday: Nik woke with a fever, runny nose and cough.  Laryngitis was worse.  We took a trip to the pediatrician (not our regular, beloved Doctor Mary) to discover that Nik is sick.  Well, thank you very much for that stellar diagnosis.  Too soon to tell whether it’s flu or cold.  Or both.  But he did get his H1N1 vaccine since his fever wasn’t in evidence at the time.

More of the same fever and coughing ensued throughout the rest of the day and night.  Very little sleep was had by a stuffy, coughing cranky boy. Or his mama.

Today, Friday:  More of the same only wider swings of the pendulum. Higher highs for short spikes followed by long periods of near-normal temps.  Gotta love the wonders of Advil, Sudafed PE and Delsym.  The appetite, though?  Fuggedaboudit!  If it wasn’t slushy or thin liquid, Nik had no interest.

By dinner time, my boy was sporting oozing green and gunky eyes, too.  A call to the on-call doctor confirmed my fears: pink eye in both eyes! UGH.  Apparently, this was enough to push Nik over the edge, too.  He hit the wall hard and fast after dinner and just crumpled into a sobbing heap on the sofa at 6:30 —while I was at the pharmacy picking up his antibiotic eye drops.  His fever spiked again to 102.3F  Better than last night but still not encouraging.  The only saving grace (knock on wood!) is that his chest still sounds pretty good; all the goopyness is in his head.

Thank goodness for the weekend and a chance to lay low and, hopefully, regroup and recuperate.  Wishing you and yours a good weekend.

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A new mantra

When we let go of hope, fear wins. 

I’m holding on tight; sometimes it feels like it’s a close race.

That’s all.

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Trying to get a word in edgewise

I’ve got a head full of thoughts to share —many about communication, the challenges and intricacies of using AAC devices, and some thoughts and questions about the interplay of vision and attention span.  They’ll have to stay there a while longer, I’m afraid.

My days have been filled with playing “guard the (feeding) tube” and “mop up after me!”  Seriously.  Nik has taken to pulling his tube out more than half a dozen times in any given day (today is a new high, I think) and is making his distaste for pull-ups —even when dry— inordinately clear.

It has gone from startling to amusing to downright annoying as hell.  Where once Nik would either pull his tube or strip and go to the bathroom on the floor, now we are hit with a constant double-whammy.  It has become a game to Nik.  He cannot be left unattended right now.

Niksdad and I have decided to take it in stride and not make a big to-do over the behavior.  We know Nik is trying to communicate that he wishes to be rid of both the pull-ups and the tube.  We also know that several things have to happen in order for that to come to pass sooner rather than later.  We’re working on those things daily.  However, Nik, in his infinite smarty-pantsness, has decided we’re not taking him seriously enough and has escalated his campaign. 

Yesterday, as I stood in the kitchen preparing dinner for my perpetually hungry son, I heard a distinct thwackof snapping elastic.  Concerned, as there should be no items in his play area which make such a sound, I looked over the gate to make sure Nik was okay.  There stood my indignant child, in all his au naturel glory, very deliberately ripping the elastic tabs on the dry pull-up he had just removed.  I had to chuckle at his determination; he’s figured out that we cannot reuse the pull-up if it won’t stay on his bottom.    As I looked, I could also see that Nik had removed his feeding tube —yet again.

I sighed and turned to get the necessary supplies to restore order to his clothing and his tummy.  As I returned to the family room, I found this tableau.  There was no hint of randomness to it in the least.

"Dear Mama & Papa, I'm D-O-N-E! Got it?"

Dear son,

Your message has been received loud and clear.  Believe me, we want to be done with this nonsense of the feeding tube and the pull-ups once and for all as well.  Alas, it is not yet time and we must continue to dress you and re-insert the dreaded tube for a while longer.

Meanwhile, please give us a break? ‘K, thanks.

Love,
Mama and Papa

**********************************
ETA:   Nik decided we really hadn’t gotten the message clearly; today he pulled the tube and hid it under the sofa. 

Pray for us.

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Tu-be or Not Tu-be?

A taste of life at our house during a three hour period leading up to and including dinner and bed time as told through actual postings from my Twitter account.  (Thanks, TC, for helping me see the humor!)

Dear son: pulling your tube *out* is supposed to hurt. Putting it back *in* isn’t. You’re doing it backwards. Love, Mama

 

p.s. to my son: Next time you pull out your tube, please let me know sooner? That hole closes *awfully* fast, lovie. K? Thx, Mama xoxo

 

Dear son: “Third time’s the charm” doesn’t apply to pulling your feeding tube out.

 

Dear son: STOP WITH THE DAMN TUBE ALREADY. Love, Mama & Papa

And the tweet I didn’t have a chance to send:

Dear son: Thanks for passing out cold in my arms at 7:15 tonight.  The feel of your snuggly little body nestled against me —your forehead against my lips — makes me forget all the rest.  Love, Mama

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