Archive for the ‘sadness’ Category

The shoes should have been our first clue.

After a perfectly delightful morning —one which began after more than twelve hours’ sleep for Nik and a leisurely breakfast for myself and Niksdad— we began our preparations for a jaunt to the local peach festival, followed by a visit to the park.  The pre-departure routine is always the same: “Okay, buddy, time for some clean pants.  Bring your toy and let’s get clean pants.”  “Clean pants first, then socks, MAFO’s and shoes.”

Nik is always eager to perform this routine; he loves to go out with us.  Lately, he’s begun to put his orthotics on by himself —even getting them on the correct feet.  He was just beginning to clamber onto the sofa, where I sat waiting with wipes and pull-up in hand, when Niksdad brought over his socks, MAFO’s and shoes.  The scream which issued forth from my heretofor sunny child was unlike anything I’ve heard except when he is in extreme and urgent pain.  It was the kind of sound which makes my heart race and causes me to drop everything and come running in an instant, certain I will find my child covered in blood.

There was much wailing and gnashing of teeth (to put it quite mildly) until we figured out the problem: the shoes.  Perfectly good, serviceable Nike’s which Nik has worn on many occasions though not for sometime.  (His other Nike’s were so filthy from repeated outings to the park— the laces were nearly black— that I insistedwe wash them last night; they were still in the laundry closet, slightly damp.)  I put the offending shoes on the floor at my feet while Niksdad went to get the still-damp shoes.  Apparently, even that was too close for those awful shoes; Nik screamed and jumped off the sofa, grabbed the shoes and ran to the entertainment center to put them on top.  That’s were they’ve been sitting for weeks now; it made perfect sense to Nik’s sense of order.

Once Nik realized the “correct” shoes were going on his feet he calmed down.  In fact, he seemed quite eager for our outing.  Off we went on our merry way.  “We’re going to get ice cream first, then go to the park. Ok buddy?  Ice cream first, then park.”  I repeated that phrase, like a mantra, as we drove.  Nik is usually pretty good about changed routines or routes as long as I tell him the sequence several times over.

I should have known that the shoe incident had my precious boy already wound too tightly.  As soon as I turned right at a traffic light where we normally turn left, Nik’s tenuous balance shifted and the tempest began.  I talked to him in soothing tones as I drove.  “It’s ok, sweetie, we’re going to get ice cream first then go to the park, remember?  It’s ok.  You’re ok.”  All the while, Niksdad held on to Nik’s feet so he couldn’t injur himself (or us) with his kicking.  I drove with one hand on the steering wheel and one hand holding Nik’s sweaty fingers, gently squeezing to give him some proprioceptive input which I hoped would calm him.

We parked right next to the entrance (God bless our disabled parking placard!) and waited for the storm to abate.  When Nik didn’t seem to show signs of calming, Niksdad said tersely, “This isn’t going to work, let’s just skip it.”  His frustration level was, understandably, rising with each howl and each kick which landed on the back of his seat.  Not realizing that Nik was already overwrought and wound too tightly, I insisted we at least get out of the car and try

There have been times when simply getting out of the car has shifted Nik’s attention enough that he is able to calm down and we end up having a decent outing.  I also felt very strongly that we neededI needed— to not be held hostage to the autism.  We spent the first two years of Nik’s life sequestered away from everyone and everything because we had to protect Nik’s fragile immune system.  We’ve spent much of the last couple years isolated from nearly everyone and everything except the occasional family outing.  At some point, I felt, we just have to say “Damn the consequences!” and try —just try— to be a part of the very society in which we want our boy to thrive.

Today was not the day for that.

We never made it to the ice cream or the petting zoo.  We pulled into the parking lot at the park and Nik fell apart again.  By this time, he was so overwrought he couldn’t tell us anything.  “Are you hungry?” Nik signed please so we offered him a bite of his sandwich; he thrust it at me and screamed.  “Do you want to go play in the park, sweetie?”  He simultaneously signed please and shook his head no.  I started to hum Mary Poppins songs to calm him.  It seemed to work until I stopped.  The wailing began again.

We drove home to nurse our wounded hearts and try to figure out what our boy was telling us, what he needed.  As we pulled into the driveway —like magic— the tears and tantrums abated and the happy singing began.


Nik has now had lunch and is a very happy camper —singing Mary Poppins and Signing Time songs to his toys, playing with his alphabet puzzles.  We may attempt the outing again in a while —or not.

It’s so hard, trying to find the right balance between stretching Nik’s boundaries and honoring his needs.  Between giving my child what he needs and giving myself what I need.  Trusting my instincts and listening to the voice in my heart that says “We have to try…”  The lines are hazy and constantly shifting —like walking on a sand dune in a headwind. 

I believe we are at a crucial point in Nik’s communication development:  the more he knows he can make himself understood —and the fewer tantrums as a result of that success, the more intensely frustrated he becomes in those instances where he cannot make himself understood.  The extremes seem to be farther apart and I feel stretched to my limits straddling the chasm.  But I’ll write more about that another time —after I mull it over some more.

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Look out! Look out!
They’re walking around the bed
On their head
Clippety cloppety
Arrayed in braid
Pink elephants on parade

“Pink Elephants On Parade,” from Dumbo

It feels like there’s a huge pink elephant sitting in the middle of my cyber living room and I cannot get past it to write anything else until I deal with it. Of course, no one else can see this elephant because it is really in my mind. But since blogging seems to help me work out some of these things, well, you lucky readers will get to join me in my sorting it out. Grab your hankies, this feels like an emotional journey of epic proportions today.

Since Nik was born, this has always been a very difficult time of year for me. I know that it should be filled with joy and hope, faith and miracles, and all that sort of stuff. But for me, try as I might to let it go, it still carries the essence of anxiety. The glimmers of impending catastrophe that gnaw through my veneer of calm, cool collectedness.

We knew just before Thanksgiving that there was something “not quite right” with my pregnancy. I spent the two nights before Thanksgiving at the hospital getting steroid shots and being monitored for hours before they would let me go home. My sister’s in-laws —who always welcomed me with open arms to every family gathering since my own family was 3000 miles away —pampered me and waited on me hand and foot that year. Nik was born via emergency C section the following Tuesday afternoon following a scary non-stress test (you gotta love the oxymoron name of that one, huh?!). My husband was somewhere under the San Francisco Bay —on his way to a conference in the same town where I sat alone and terrified in a hospital labor and delivery ward waiting to find out whether our child would make it long enough to be delivered.

Nik was in rough shape with no amniotic fluid to cushion him, the umbilical cord was wrapped a couple of times around his tiny fragile neck, and he was in a breech presentation. Try as they might, the OB and perinatologist couldn’t get Nik to respond to any stimuli. His body was shutting down and his heartbeat was irregular. Time was slipping away and attempting to take my child with it.
Niksdad made it with some few minutes to spare. Nik followed soon after.

I don’t’ remember much of the delivery, except the feeling of my insides being stuffed back in before they stitched me up. Niksdad had left my side to be with Nik. He was the only one of us who saw our son’s face unencumbered by breathing apparatus for weeks. Niksdad’s strongest memory of the moments after the delivery is of touching Nik’s hand and feeling Nik’s miniature grip around the tip of his index finger. “I’m here, Daddy. Don’t go away.”

Yet here we are four years later with our strapping boy. He has so many challenges and he fights like a hero every single day. I know I should be reveling in that spirit. And most days I do but, for some reason, these days approaching Nik’s birthday are always a roller coaster of emotions for me —and for Niksdad though he doesn’t show it quite as obviously as I do. There never seems to be an end in sight, a soft place to land to catch our collective breath.

I am sure some of this feels more intense this year because of the episodic pain that Nik has been having and our anxiety about finding a cause —and putting an end to Nik’s pain. Then, too, there is the fear and uncertainty of what lies ahead for Nik in terms of his overall development. We refuse to accept that Nik will not progress beyond where he is now in terms of his ability to communicate his wants and needs. With each passing day I see Nik become so much more engaged in his environment, so much more interested in socializing with familiar people like his grandparents and his therapists. Yet we also see so many times where Nik is simply not present at all; he has retreated into a place where we cannot reach him. There seems to be no middle ground, no place where we can see a continuum of progress unfolding.

We feel lost as to what to do for Nik. We pulled him out of school because we knew it was too overwhelming for him. Yet he needs something more than I am able to give him by myself. There is such a dearth of resources in our state unless your child is in the school system. It feels so damnably unfair that I have to put my child in a situation that I know is not good for him in order to gain access to certain services. And it breaks my heart that our financial situation is what it is right now and that we are not in a position to be able to pour dollars into additional therapy for Nik; he responds so well when he gets it.

Maybe that is the emotional parallel that I am feeling right now —the uncertainty, the fear of whether my child will be alright, and the worry that I am not up to the task. It definitely feels the same as it did four years ago; that’s a feeling I haven’t had for a very, very long time. I know that I cannot see into the future and I’m not certain I really would want to know anyway. But I seem to have lost my sense of being grounded recently and I don’t know what to do to get it back.

I need guidance, practical guidance, to find resources I can use to help my child. Things that I can do right here, right now —at home —that aren’t going to cost me an arm and a leg. Things that will give Nik some good sensory input and help him regulate himself enough to stay present more than spurts and moments in a day so he can learn the things he needs to learn. To communicate when he’s had enough and needs a break, when he’s hungry, when he’s bored and wants my company —and so much more.

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I love the internet and the communities we create with one another. One of my favorite moms —and a thoughtful, thought provoking blogger —emailed me tonight. Her radar must have been up because she asked how I was. Nothing unusual about that, right? I dunno, call it weird vibes but I thought I could sense “you’ve been kind of quiet, are you ok?” behind the question.

I’ve been wrestling with a situation —it’s not a problem, but it is something which requires resolution —and it’s been my own personal Deatheater all weekend long, just sucking the life and soul out of me. I’ve been thinking all day long about what I wanted to write tonight. My response to her email follows:

“We’re…ok…sort of. Long story short– we have a chance to fight
to take Nik out of school but it requires building a pretty significant
case to convince Medicaid that they should pay for Nik’s therapies
and stuff. I’ve spent the better part of the last 4 days combing through
records and drafting “talking points” for a conversation with the case
manager. I’m angry that I even have to do this. I’m depressed to see
the realities of Nik’s *minimal* progress over the course of the last
calendar year. And I am concerned at the concrete evidence that Nik
is also far more susceptible to illness than I had perceived.

BTW, don’t be surprised if you read some of these very same words on my blog later…I’ve been wrestling with a post about this issue. In light of how all consuming it feels, I’d say it’s appropriate. Plus, Nik’s IEP is Friday.

Plus…Nik fell again Friday and hit his head really hard. More seizures in the hour
following. He’s been falling more lately and hitting his head.
Tonight he pitched face-first onto the hard floor. Nice goose egg on the
left side to match the cut he got at school this morning on the right…”

So, I guess you could say my plate feels a tad overloaded and I’ve had my fill and then some! Lori at Spinning Yellow has a post up today about looking at her life in terms of time looking backward and time looking forward. That’s kind of what I’ve been doing all weekend long with respect to Nik’s life as it relates to medicine and education. Here is some of what I discovered:

In a full calendar year, Nik made nominal progress in OT and PT skills —as indicated by three assessments done over the course of the year (school intake last July, outside professionals in Feb, and his current private therapists this July). Over that time, he made roughly a three month gain; he had been making more significant progress with individualized services through early intervention.

Speech is even uglier…

Based on where he was when he started school, Nik has actually regressed to the functional communication of a 6 month old —courtesy, in my opinion, of the utter lack of stability in our school’s SLP staffing. Nik’s first speech therapist met him evaluated him, and left two weeks later. The next one lasted the school year but did very little. We spent a lot of time addressing the feeding issues —which it took Medicaid to tell me “Oh, no, schools don’t handle that stuff at all,” before we realized we had wasted an entire year for nothing. The actual communication issues? Not a whole lot of progress. But — and forgive me if I sound bitter here — it’s awfully damn tough to make any progress when you spend roughly fifteen minutes a week with a child. Even that wasn’t always one on one. How do I know, you ask? I requested the records from the SLP before she left school last Friday. Yeah, the revolving door of speech therapists strikes again.

So, let me put it this way —all things remaining the same as they were over the past school year, at his current rate of progress, my now nearly four year old will be functioning at the level of a two year old by the time he starts first grade. Now, I know there are many, many children for whom this would be remarkable progress. I also know that Nik started life with the deck stacked not exactly in his favor. But my son is so smart and keenly analytical. He’s the kid who mapped out how to get out of his crib without ever actually making practice attempts first. The kid who can watch me work a deadbolt a few times and then figure out how it works —again, on his first attempt. He is also the same kid who makes remarkable, steady progress when he is given the right level of services.

Bear in mind, this is all based on testing and evaluations up to —but not including— the arrival of Miss D and Miss T into our lives this July. Since then…nothing but progress and rapid gains, baby! Makes sense since he’s all of a sudden receiving roughly four times the amount of therapy he got all last school year.

I forgot to mention, all of this mayhem is the result of a great conversation with a very savvy advocate —the same one who is coming to the IEP on Friday! It is at her urging that I embarked upon this tedious and frustrating (albeit highly edifying) endeavor which I hope will pay huge dividends! Maybe that’s why it has been so difficult for me? Not so much compiling the evidence of things I already know, but the need to paint a picture of my son in such a light that we have a shot at prevailing in our quest. I am leery of getting my hopes up again only to be dashed upon the rocks once and for all.

So, this conversation with the case manager has not yet taken place; I wanted to make sure I had all my “ducks” in a row. I need to present a compelling argument to convince her that it is not only in Nik’s best interest for us to take him out of school, but that it is also a sound financial decision for Medicaid. I’ve compiled charts of data, lists of arguments, evidence to support the evidence. You name it.

I guess I can’t say it’s all been bad; I mean I did have a realization about Nik’s health which had not been so clear to me before.

Since I’ve been mired in depressing health statistics today I will share them with you. Lucky you! In the past 15 months —which is the time frame since he began school at the age of two and a half —Nik has:

— missed 32 days of school (more than 6 weeks). Of that time, more than 70% has been due to illness, including a week-long stay in the hospital in January.

— been on antibiotics 14 times in 15 months.

— lost an average of two hours sleep for every school day because we have to wake him early enough to get his tube feeding in to fit the school schedule.

— lost and gained and lost roughly the same three pounds —right now he’s holding steady.

— been diagnosed with an immune deficiency and now needs to be on antibiotics every time he is ill so he can fight off any secondary infection. The constant use of antibiotics puts Nik at significantly increased risk of developing resistance to the few drugs he can take; he is allergic to all “-cillin” drugs (Penicillin, Amoxicillin, 4 generations of cephalosporin drugs, etc.).

In addition to all that, there are numerous developmental reasons why school is not right for Nik at this point. Nik requires significant one on one attention and direction simply to engage him in a desired activity. He also requires highly focused, individualized attention to practice and retain new and emerging skills.

To date, despite numerous conversations about the need to do so, there has not been any effort made by school to address Nik’s perseverative behaviors —specifically doors and drawers. Nik doesn’t respond to a simple reprimand/rebuke. He needs active redirection until he has the cognition to understand either it is not something to play with or that he may do so as a “reward” for doing “x.” There is not a consistent manner established at school to address this “interfering” behavior. Their word choice.

It is becoming clearer and clearer to us that Nik is unable to process the bombardment of sensory input he receives during the school day. He does significantly better in a quieter, smaller environment. He does have moments of shining splendor during the school day but by the time he comes home from school, Nik is so dysregulated that he cannot function. He cannot make eye contact, he cannot sit still, he does not respond to attempts to engage him in anything; he simply likes to play on his own and on his own terms. This usually involves a lot of throwing toys and laughing maniacally! By dinner time, Nik is so exhausted from the day that he cannot pull himself together to function without the risk of injury (like tonight’s “facer”). Often, he is nearly passed out from exhaustion before his dinner is even finished.

Then, too, we have concerns about Nik’s physical safety at school during his period of being a “new walker” combined with his visual deficits. Of particular concern is his depth perception in an environment that is visually very flat and composed of cinder blocks and hard tile floors, lots of counter tops at eye height, etc. Nik has already had two episodes in two weeks of falling and hitting his head hard enough to cause clusters of increased and changed seizure activity immediately following. There is talk of trying a soft helmet but we have very strong doubts that Nik will comply due to sensory issues he has with things on his head. School is the only place Nik has this problem with any consistency.

As I re-read what I have written, I can understand my mood of late. It’s not that I don’t have the greatest of hopes for Nikolas —I absolutely do! It just frustrates me to no end to realize how much harder he —and we —have to work just to provide opportunities for him to make the progress he is capable of making. It galls me that we as a nation spend so damned much time, energy and money on a war we didn’t ask for and have nothing left to nurture and educate our greatest resources of all. And it makes me sad that I have to paint a less-than-flattering (though wholly accurate) picture of my son in order to help him.

Wish me luck, I think I’ll be talking to that case manager soon.

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“I think we all feel like that, sometimes: forgetting that we have exactly what we need already within ourselves, if we can just believe in it.”

Those words, about courage, from Jennifer’s post today on Pinwheels really struck a chord with me tonight. It’s been a very trying few days here in NiksHouse. I feel like the dang centipede is tossing its shoes again. The up and down, back and forth of emotions and activities is exhausting. In spite of my working out regularly and trying to eat healthfully, I just feel like Dorothy must have felt in the poppy field. I simply want to lie down and sleep and let it all go on without me.

But I cannot. I guess that’s the cost of trying to be a good mother —no, of BEING a good mother. There isn’t much rest or respite and we have to take it where and when we can find it. I find mine online with you all. I’ve been jonesing to write for the past couple of days but haven’t been able to find the time. Now, it feels like I need to cram a lifetime into one post. Sigh… Did I mention that there are some incredible moms out there who simply must have ESP? I’ve gotten some wonderful emails from a few of you…just checking up on me. It means the world to me. More than you know right now. I may not answer each comment or email but PLEASE know that they have all touched me in the heart.

So I’ll start with the easy stuff first — Nik is having surgery Friday to remove the tube from his right ear. We have no idea if it will make any difference but we sure hope so! The episodes of rubbing and crying are increasing in frequency. Poor guy took THREE HOURS last night to cry himself to sleep. Nothing Niksdad or I did seemed to help at all. It was the tug-of-war with our hearts —the frantic cries and clutching at us for comfort, coupled with the pushing away because Nik was so tired and just wanted to sleep. Unfortunately, we couldn’t give him any Advil to help him make it through the night —too close to surgery. (Anti-inflammatories thin the blood…not good before surgery!)

We survived the bumpy night and made it through the way-longer-than-it-ever-should-have-been pre-op appointment today. Nik must have remembered last weeks’ EEG (I didn’t write about it…it was awful!) where he had to be strapped onto a papoose board and restrained for nearly an hour. (I cried when he finally passed out from exhaustion.) He had THREE major meltdowns in a two hour span while we were at the appointment today. Nothing I could do to help him except try to distract him from the nurses in their scrubs. Who knew “white coat syndrome” could start so young?

Back home for lunch, the rest of the day went great. Off to see Miss D and Miss T —our new favorite therapists. Nik is doing so much better and really making some wonderful progress. I could probably write several posts about that by itself. Suffice to say; lots of good things are happening in terms of his attention span, starting to play appropriately with some toys (instead of throwing everything), more social interactions, generally a bit calmer. You know, only Energizer Bunny to the 3rd degree or so.! Nik is communicating a bit more using some hand-over-hand gestures to put our hands where he wants them. For example, he is a smarty-pants and can buckle the lap belt on his chair, his stroller, you name it…but he cannot always open them. His new favorite game is “I buckle, Mommy unbuckles;” he clues me in to the fact it’s time to play by guiding my hands to the buckle —and wont’ let go until I’ve done my part, repeatedly! He is beginning to respond appropriately to things like laughter. He has the greatest little giggle.

So I’ve been having such a wonderful time thinking of all the fun Nik and I are going to have when he’s not in school this fall. Not that I had any specific things planned, mind you. It’s just the sense of freedom and relief since we made the decision to take Nik out of school. I was in the craft store the other day and walked past all kinds of finger paint supplies and fat crayons and play dough…and I had to stop myself from buying it all on the spot! I realized that being able to work with Nik at home will help fill some of my own need to do creative things. It might not look quite like I imagined, but —really —it’s the act of creating that is so crucial and that I have missed so much lately. I was getting really excited about home schooling.

Then the shoe dropped. Without getting into the details, Nik’s only insurance is Medicaid. For which we have been incredibly grateful; they’ve covered everything that we’ve needed so far. Until now.

Miss K, the admin at our therapists’ office, told me yesterday that they had gotten approval for only a limited number of weeks. Not a big deal; it’s easy enough to get new prescriptions/referrals every so often. The kicker, though, was the note on the bottom of the authorization form “…then transition to school.” I felt like someone had kicked me in the gut with steel-toed boots. Not the sharp stab of immediate pain, but the dull ache which builds and builds. By the time I got home with Nik, I was in a state of near hysteria. I held it together long enough to give Nik his lunch and get him down for a nap. Then. I. Lost. It.

I pulled myself together after Niksdad and I talked about it. We decided not to get too upset —well, a little is good —until we checked it out with the insurance. Maybe we misunderstood. Uh, no, apparently not. I talked to someone from Medicaid today and explained the situation and that we had not intended for Nik to return to school because he had not made any progress. The response I got was “Once a child turns three, it is the school district’s responsibility.” Ohhhhhh Kaaaaaaayyyyy.

So here I am with a 3 ½ year old who functions, for the most part, like a 9-15 month old —with some amazingly age- or near-age-appropriate scatter skills —with concomitant medical issues whom no one wants to take responsibility for providing the necessary and appropriate services. School says it medical; Medicaid says it’s educational. Mama says its bullshit!

Niksdad and I both agree that school is not the place for Nik. In the year he has been there —receiving his “30 sessions per year…minimum 15 minutes group, consultative, or individual…” in each of his services — Nik has made NO MEASURABLE PROGRESS. Now, I don’t say that to be dramatic. We have evaluations done by different professionals at different times throughout the year —including the recent evaluations done by the new OT, PT, and SLP. Every single one of them puts Nik at exactly the same age equivalent as the other reports. NO MEASURABLE PROGRESS.

Now, Nik has certainly made some progress, most of it very recently, but he continues to fall further and further behind his peers. This child whom every professional that has worked with him acknowledges is “incredibly smart,” “Very determined,” “a great problem solver” among many other things. How is it possible that this child then has not progressed? I guarantee it’s not for want of Nik’s trying!

So now we are in a holding pattern. In some bizarre turn of serendipity, I did not send the letter to school yet to withdraw Nik. Whew! I’ve gotten past the feeling of being kicked in the gut but not past the anger or frustration; I will need both to fuel me when I want to quit because I am tired.

I’ve reached out to some parents I know in my area who are very good advocates. Both have children with special needs who are significantly older — 18 and 22 — and both advocate for other children through advisory councils and through the child welfare system. I am hopeful that one or both of them can give us some guidance about our next steps. I am also looking in to finding an attorney should the need arise.

So here I sit, preparing for yet another of Nik’s surgeries. Oddly enough, it’s barely even registering on the anxiety scale. I don’t know if that’s because we are truly relaxed and know that Nik will come through with flying colors, or if it’s because I am so wound up about the school/insurance conflict. Whichever it is, we’ll take all the prayers, good karma, love, hugs, and laughter we could get about now. Our well feels a little dry.

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We’ve been through some things together
With trunks of memories still to come
We found things to do in stormy weather
Long may you run.
~Neal Young

Wow, who knew there were so many of us on this same journey?! Thanks everyone for not only your supportive comments on my existential crisis, but especially the reminders that “this too shall pass” (eventually). I guess I’ve gotten so used to worrying about something that it was inevitable I would turn my radar inward to myself and my marriage. Not a bad thing to do every once in a while, I guess.

Things are looking brighter these past couple of days. Niksdad seems more relaxed —now that he’s embraced the “no work for two weeks” concept. He’s been taking Nik to the park in the mornings after breakfast; giving me a chance to get back into my workout routine which has been interrupted by first Nik’s then my illness. It’s felt really good to get out of the house to do something that makes me feel more vibrant afterward. Sweaty, but vibrant.

We’ve made plans to take care of some projects around the house —big ones, like replacing the yucky carpet in the family room with some sort of wood laminate. The family room is where Nik spends a great deal of time and it takes a real beating. The carpet is ugly and stained and I don’t even want to think about what’s possibly growing underneath! We won’t be able to do the actual work until Nik goes back to school on the 22nd. But, the process of planning and making flooring selections —which of course leads to discussions of other projects —has felt good. It feels reminiscent of the early days in our marriage when we would tackle projects together in our first house —the one in CA, where we lived when Nik was born. We were partners and made a great team.

In fact, we still make a great team; everybody remarks on that and tells us how lucky we are. They are right. We’ve had to shift our focus quite a bit in these past few years but we’ve always worked well together —planning, discussing, researching, strategizing, dreaming together, and inspiring one another. Maybe we took our eyes off the road for a little bit but I think we’re on the right track.

It’s a bit like all the times I’ve been on a car trip by myself (in the olden days before Niksdad came along). I’d be off on an adventure, driving down the highway —not always toward a specific destination. I’d look down and the gas gauge would read near empty and the next exit wouldn’t be for miles and miles. I’d drive along, darting anxious glances at the fuel gauge every few seconds, wondering when I would run out of gas on some lonely stretch of road. Know what? It never happened; I always made it to a gas station in the nick of time.

I need to remember that more often when I get antsy about my life —especially my marriage. The frustration, though, of not being able to have consistent time alone together gets tough. Unfortunately, we aren’t exactly in a position to shell out bucks for specialty care givers —which are VERY hard to find around here. In fact, there’s such a demand that no one with the right qualifications wants to work the small number of hours we need. The respite system in our area is the pits for us right now. Medicaid doesn’t recognize the need for couples to go out once in a while as legitimate. If I worked or were in school, then they would consider our eligibility. The only drop-off respite we’ve been able to find doesn’t’ work with our schedule and our needs. So, we limp along with the help of my folks for now. During the school year I think (I hope) it will be a bit easier; some of the Para’s also do childcare/respite once in a while and I know lots of them!

Meanwhile, though, we’ve been making plans to do some things together as a family; things like a return trip to the beach, a trip to the zoo, a local peach festival this weekend, the pool at my parent’s country club in the afternoons (weather permitting), and a trip to a new “Can Do” playground which opened up about an hour north of here, near the hospital where Nik sees all his specialists. We might even try XBos again!

It feels like a time of renewal somehow. Maybe not quite what I had envisioned —you know, candle light and romance —but perhaps better, more important as we, Niksdad and I, learn to make the most of the precious time we do have together. Time that must include our son right now.

Long before Niksdad and I got married, I wrote a vision for myself of what I wanted our marriage to be:

Niksdad and I have a loving marriage and raise healthy children in a warm,
loving, creative, and stable home. Our relationship touches the lives of
many as we open our hearts and home to many children. Our love helps heal

Deep, huh? It may not look quite the way I had envisioned it all those years ago, but perhaps we haven’t lost our way after all. Maybe I just need to check the map every once in a while to realize that the wrong turns or missed exits will still get us to our destination —wherever that may be. And if I let myself, I just might enjoy the ride.

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Yesterday, as you can probably tell, was a difficult day for me. I am sure the fact that Nik had such a difficult day, too, didn’t help one bit. His blankety-blank ear is acting up again…worse lately than it has been in a while. No signs of infection (yet), but I think it’s on the way; he woke up screaming this morning and hitting his ear. Sigh…

Meanwhile, we’ve been starting to make some connections that are leading us to wonder if Nik may have some sort of vestibular disorder. It’s still early stages of mulling things over but we will definitely ask the docs to consider checking it out. He’s got significant vestibular insecurities (more than he used to), his balance has been kind of funny of late, and his eyes…well, they’ve got a lengthy history of their own. Throw in the whole weird ear saga that continues to worsen with no sign of infection. I don’t know that we would have put these particular pieces together but the new OT indicated some things in her initial evaluation which do seem to be cause for concern; it certainly bears checking out.

Yesterday was one of those days for Nik. Manic tears and laughter all morning long. Nothing made him happy or comfortable until he had Advil at lunchtime.

After a short non-nap (happy quiet time in his crib), my happy-go-lucky boy was back. In rare form, too! It never ceases to amaze me how Nik makes such rapid progress when he is well and healthy and how quickly he seems to lose skills when he is under the weather. In the morning, my angel couldn’t pull hiimself together to be able to cry out for “mamamamama”; even a trip to the park just didn’t cut it.

Yet by the afternoon he was literally climbing the walls…and the furniture…and the windows.

I took him for a walk to my parents house (roughly 2/10 of a mile round trip) without his orthotics; I wanted to wear him out so he’d sleep well! LOL. He walked the entire way there without having to stop and sit once! Just held my finger and marched his wobbly little body all the way there. He knew where we were going and was very excited; he adores his Nanny and Granddaddy! Good thing it’s mutual; Nik fairly attacked his Granddaddy by climbing onto his lap and demanding “kisses” by touching his forehead to Dad’s…over and over and over. My dad was in heaven.

Nik showed off his newly developing walking skills by taking a few steps here and there to Nanny’s outstretched hands, demanding that she play their special singing, clapping game. No one does it quite like Nanny.

Niksdad’s work schedule was changed for this weekend…some unexpected time off. Between studying for his final exam on Monday and getting some yard work done, I think we are going to try to have a date night tonight! Woo hoo!

Here’s to a brighter day…for everyone!

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Today I feel like crying —for no reason, for every reason. For joy, for grief long past, for frustration, for my son, for my life. I’m sure it’s a combination of factors such as sleep deprivation and hormones (gotta love PMS), but the feeling is so overwhelming that I am afraid to give in to it; I am afraid that once I start I will be unable to stop. I want to wallow but I cannot go there today. Nik needs me to not go there today. Still, I cannot shake the feeling. Maybe I need to let it out to move on.

I have read and re-read Jennifer’s post on ParentDish about her twins, Bennett and Avery. It is a beautiful post about their brotherly bond and the ways they are changing as they grow. It is also evocative of the anxiety which ensues upon coming home from the NICU with more than one vulnerable baby. It is, truly, a wonderful post. I hated it.

It made me cry —hard. Not from the beauty of Jennifer’s words or the images of her boys falling asleep, limbs tangled together. For me, it was like ripping a scab off of a wound I have buried so deep within my soul that I had nearly forgotten its existence. Nik had a twin.

Somewhere in the transition from my first to my second trimester, Nik’s twin simply vanished. Gone as if it had never existed yet I have the ultrasound pictures to prove that it had been very, very real. I was crushed. Niksdad and I had tried for so long to achieve a successful pregnancy —riding the roller coaster of infertility treatments and multiple early-term miscarriages —that we had nearly given up on our dream of our “prefect” family of four. While we hadn’t intended to have two at one time, we had just started to get used to the idea of our “red-headed twin boys” which is what we were sure we were going to end up with.

I remember crying on the way home from the doctor’s office. Niksdad gently held my hand and whispered that maybe we could try for another one after “Poindexter” was born. But I knew in my heart that we wouldn’t; I was turning 40 in just a few weeks and I had already had a difficult first trimester out of work on limited-activity disability which might as well have been complete bed rest. What should have been a period of joyful anticipation for us was, instead, a time of intense anxiety and hyper-vigilance. I packed away my tears and pain over the loss and tucked it in the back of my heart. The baby living and growing inside of me needed my energy now. Grief would have to wait for another day.

As fate would decree, that day would have to wait for a very long time. Nik was born three months early but measured as if he had been four months premature. We hadn’t known until during my delivery that I have an anatomical anomaly — a septate uterus. A thin, membranous wall divides my uterus in two; the “wall” has no blood supply. Apparently, the placenta had attached itself to this membrane as well as to the uterine wall. The result is that Nik had less than optimal blood supply throughout my pregnancy. The doctors suggest that this is the reason for Nik’s prematurity and extremely low birth weight as well as the reason his twin vanished. No one can say with absolute certainty though.

With Nik’s very premature arrival and the resulting changes in our lives —on the order of some very significant magnitude —I’ve just never stopped to look back. The intensity of the early months in the NICU and the fears of whether our dearly wanted child would even live consumed our every waking thought. I couldn’t spare a jot of energy for anything or anyone beyond my husband and our son. I’m not sure Niksdad would even want another one after all we have been through with Nik; it has been like the tempering of steel in a very hot fire. The heat is exhausting and the fear of being burned is too great.

Bit by bit, I am coming up for air and discovering that life still exists in the “outside” world though it seems just barely on some days. My not-so-baby boy still needs me, perhaps now more than ever. He needs me to help him navigate his way through his day to day world, to guide the hands and hearts of those who teach and work with him, to stand firm in the face of ignorance, pettiness, prejudice, and a tightwad school system.

Having another child is simply not an option that Niksdad and I feel we could responsibly, or in good conscience choose; I have been told by my doctor that I would be on complete bed rest and face a pretty high chance of having another premature, medically vulnerable child. While I wouldn’t have terminated my pregnancy had I known what was coming with Nik, I would not knowingly risk a second; it wouldn’t be fair to anyone involved. So I don’t think about the twin that vanished or the idea of having another child anymore —when I can help it.

Still, there are quiet moments when I am caught unaware by an invasive sadness; sometimes, it sneaks up on me as I watch Nik playing —especially if he seems bored. It is sadness for what might have been. Not Nik as a “normal” healthy toddler without disability or challenge. I can no more alter my son, nor would I want to anymore, than I can call down the moon. Instead, I am filled with regret and longing for the brother or sister Nik will never know. For the sibling who could have—might have— taken the lead and taught him things, shown him things, played games, or shared secrets and tangled limbs as they fell asleep in the dark. For the brother or sister who would also learn from Nik —about strength and dignity and courage. About loving fiercely and unconditionally. About grace and acceptance.

If it is true that God only gives you what you can handle, then I must be grateful for the gift of Nik and God’s confidence in me. Frankly, there are days I doubt my ability to give Nik what he needs and I am convinced that God got it wrong. Still, there are days I wonder why God chose only one for me. Blessings and lessons come in unexpected ways.

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