Archive for the ‘family’ Category

As many of you may recall, Niksdad —once a professional Mechanical Engineer licensed in three different states —has gone back to school for nursing. Not just any ol’ nursing, no sir not for him. He wants to be a pediatric nurse anesthetist.

In spite of the fact that he’s already earned multiple degrees, Niksdad had to re-take some courses in order to qualify for the nursing program he is in. He has been in school for two years now —maintaining a 4.0 average, too, if I may brag for a moment —and has finished all but one of the requirements for his LPN (licensed practical nurse); the final hurdle is this exam.
He takes it tomorrow at 7:30 a.m. (Eastern).

He’s been studying like crazy for the past couple of weeks. I know he’ll do great; he never trusts his own knowledge and brilliance. Please think good thoughts for Niksdad to pass his exam tomorrow. Once he passes that test he can start working as a nurse! (Goodbye, Home Depot!)

Of course, I won’t even start to think about the extra year to complete his RN, the year he has to work after that, the additional Bachelors degree (BSN) he must get, followed by the Masters in Nursing he needs to then enter his chosen field.

There are lots of steps and stops along the way. But this one? It’s a biggie —and I’m so proud of him.

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From pigtails to perfume
I’m growing up so soon
Going to parties
I love having my own room
Don’t spend as much time at home now
There’s so much to do
But I know, it’s true

I’ll always be daddy’s girl
Out in the great big world
He’s taught me what’s right from wrong
I feel so strong
I’ll always be daddy’s girl

I fill up my diary
With all my dreams and hopes
My future keeps changing
Like a rainbow kaleidoscope
A special boy waits just for me but
Even though he’s so nice
I know, inside

I’ll always be daddy’s girl
Out in the great big world
He’s taught me what’s right from wrong
I feel so strong
I’ll always be daddy’s girl

Soon I’m gonna be all on my own
I feel ten feet tall
I’m not that little girl any more
I can do it all

I’ll always be daddy’s girl
Out in the great big world
He’s taught me what’s right from wrong
I feel so strong
I’ll always be daddy’s girl

The greatest gift in the world
Is being daddy’s girl
He’s given me the perfect start
Right from the heart
I’ll always be daddy’s girl
I’ll always be daddy’s girl
I’ll always be daddy’s girl
Daddy’s girl

Daddy’s Girl ~ Sailor Moon

You know, I didn’t fall for just any ol’ Tom, Dick, or Harry. Oh, oops —ahem— actually I did. My grandparents had a funny sense of humor and named my father and his brothers —one fraternal and two identical triplets born in 1931— names which could be (and were) shortened to Tom, Dick, and Harry. They were minor celebrities in their hometown.

Happy Birthday, Daddy!
Though the years have changed us, they won’t change my love for you.

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In the midst of some continuing troubled times with Nik’s increasing chronic pain episodes and so many moments when I feel tired and hopeless about any number of things having to do with Nik’s development and future, Nik somehow finds ways to make me smile and laugh. Or to weep with overwhelming love.

So many of these moments involve either his antics with food

Of course, I completely understand the attraction. I’m just as crazy about the big guy as I am the little guy.

Thank goodness for my two anchors; when I seem to lose my way they are the beacon which guides me back home. Back to what matters most.

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It’s been a super long week…seven appointments in four days, 300 miles on the car (for the appointments), and a very high stress day yesterday which involved a missed workout, mopping the floor twice, wiping down the TV and entertainment center and shampooing the sofa. Oh, and a solo-parent outing with Nik on Thursday night in a non-child-proofed house! In spite of all that, Niksdad and I managed to squeeze in a date Friday night and all three of us had dinner with my parents tonight. I even managed to fit in three workouts this week.

In other areas:

Keep your fingers crossed…I think we’ve debugged the episodic pain thing (no thanks to any doctors though!), or so it seems. Since we increased Nik’s caloric intake and are making sure he gets a snack or something roughly every three hours, Nik’s been sleeping anywhere from ten to twelve hours each night…straight through! And the day time episodes have diminished significantly; we’ve gone from ten plus episodes a day to roughly half a dozen or fewer a week now. I really do think it has something to do with his metabolism or his endocrine system; it wouldn’t surprise me as I have some issues there as well. Still, we are going to go ahead with the video EEG (Feb. 26-28) to make sure it’s not related to any seizure activity. Nik’s seizures are, for the most part, subtle and can be easily missed. Occasionally, like last night, he will simply drop. Fortunately, Niksdad was on hand to catch him so we avoided any bloody lips or nose, thank goodness!

There are times that the pain seems to strike Nik completely out of the blue; he’ll be having lunch or playing happily with a toy and then —all of a sudden he begins to cry and punch himself in the head or poke at his eyes. Those are the ones which cause considerable consternation for us all. But, there are times when Nik uses the same behavior to communicate his anger, frustration, or boredom. Teasing out the difference between the two has been much easier since we made the assumption that any actual discomfort may be caused by hypoglycemia or something in that realm.

Really, though, I’ve got to give Nik credit for his smarts; he’s identified the fastest and most effective way to get Mommy and Daddy to drop everything and come running when he wants us. Since he can’t call out for me, and he can’t tell me what he is feeling —yet—he bangs his head. I don’t like it but it makes sense to me. The next step is to work on finding ways for him to express his frustration without causing himself physical harm. My mother and I are constructing a very large “crash pad” that I want to try to get him to use for those times. We’ll see how that works out. Meanwhile, I need to get things rolling to procure the AT devices which were recommended at Nik’s recent AAC evaluation. If we can get those into use I think we will have a pretty good shot at, eventually, making some headway in minimizing Nik’s acting out of frustration.

I don’t know if Nik is going through some sort of separation anxiety phase right now —or maybe it’s just a control issue; lately he wants me to play with him constantly. He loves to play with his shape sorter —he has three different kinds, two of which he has mastered and the third he is well on his way to mastery. If I sit with him and talk to him while he works —Oh, look it’s a red triangle, Nik. Where does the red triangle go? Can you show Mommy the blue square? —Nik will empty and fill the darned thing a dozen times or more if I let him. But the minute I turn away —even if I get up to blow my nose —Nik gets up from the floor and begins to methodically throw all the pieces over the gate; he never seems upset —in fact, he laughs this giddy little giggle while he is doing it. If I stop him and sit down with him again he will continue to play happily.

The kid is insatiable for the company of Mommy or Daddy. We don’t necessarily have to be doing something directly with him; we just have to be close enough for him to engage us if he wants to. The irony is that when I try to take him to the Y and put him in the Kid Zone (childcare) so he can play with other people, he completely freaks out. Last week he got himself so worked up that he threw up everywhere. I know that if I can spend a few minutes with him and distract him with the toys he will be fine and won’t even miss me.

Yesterday morning was beginning to be a repeat of last week; when I told the attendant that I needed to help Nik transition, I was told emphatically that no adults other than Kid Zone attendants were allowed in. This particular person didn’t know Nik (I don’t usually take him on Saturdays) so they didn’t understand the need. To them, they just saw a small child with a behavior problem; their attitude was pretty much Tough luck, lady! I left angry and frustrated —and had to blow off my workout partner! The people that work there during the week all know Nik and work with me to help him adjust. In fact, when I see these same ladies out in the grocery store they all ask me Where’s Nik? How’s he doing? We haven’t seen him in a while! There’s a relationship which gives us the flexibility and understanding to bend the rules a bit.

Yesterday was my first time encountering a person who either didn’t get it or didn’t care; it was eye opening for me in many ways. I realize there will be many, many people who neither get it nor care and I need to figure out how to handle it in a way that takes care of Nik without alienating others. I know we will encounter it more and more as we venture out into the world beyond the safe and familiar confines of our home.

Today, though, provided a foil for yesterday’s anger, frustration, and disillusionment. Niksdad didn’t have to work so we had a nice little family outing this afternoon —at the Y! We figured it would be a good idea to see how Nik handled being in the pool before we plunk down the fee for the special adapted swim time I wrote about here. It’s been about six months since Nik has been in a pool of any sort so we weren’t quite sure what to expect.

The tears started as soon as we pulled up in the parking lot; seeing Nik’s bottom lip quivering and the tears running down his cheeks nearly undid me. But we took a collective deep breath and forged ahead. Once Nik realized he wasn’t going to the child care area he calmed down —until he got into his suit and entered the pool area. Does the phrase “clinging monkey” give you a clear enough image? As soon as Nik got into the pool with me, the tears and panic set in. I don’t know if it was a sensory issue or just plain old fear; I suspect it was some vestibular insecurity. Whatever the cause, it wasn’t pretty!

I held Nik tight in my arms and sang one of the lullabies from Mary Poppins in his ear. That helped a bit but he was still really clingy; Niksdad and I were both surprised as Nik was once so comfortable in the water. Eventually, we found a distraction in the form of some pop-beads which were floating in the water. Niksdad and I got Nik interested in taking them apart and putting them together again; the whole time I was giving him some deep pressure around his pelvis and making sure he could feel my body under his. About fifteen minutes after we got into the pool, Nik relaxed his grip on me and seemed to settle in. By the time we were done —about thirty minutes later —Nik was only holding onto my index fingers, splashing, kicking, and even dipping his face into the water!

The whole family left the pool in a great mood. You might say we were floating. Not a bad finish for a week that started off feeling like we were drowning!

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The purity and generosity of a child’s heart can be astounding —and humbling. A child’s experience has not yet shaped the walls and barriers that we erect to protect us from life’s insults, injuries, and injustices. Children, somehow, have an uncanny ability to see the heart of a person when they are given a chance to spend some time with them. It is evident in the way a small child will shy away from a family friend or gravitate immediately to a seldom seen relative. Their radar is highly accurate when we give them a chance to use it and listen to it. The gifts we can receive from this can be profound —perhaps even miraculous.

My in-laws arrived on Tuesday night. As I wrote in this post, I was filled with trepidation, anxiety, and resentment at the intrusion. The history between my MIL and me has been cordial —on the surface —but strained as far as I am concerned. There is a lengthy history on her part of passive-aggressive behavior —toward even her own family—lying, secrecy, condescension and resentment when things do not go according to her plan. On my part, there has been anger and resentment at her manipulation of her own family members, her intrusive questions about aspects of our lives which are none of her business, and —the most damning sin in my eyes —her cavalier attitude about her only grandchild, my son.

My father-in-law is a man of very few words —to anyone; he spends much of his retired life outside the house. I don’t know if this is to avoid confrontation at home or to fuel his rabid obsession with trains —all things trains. Knowing what I now know about Autism, I might venture to guess that he falls somewhere on the spectrum but I cannot say for sure. In any event, when it comes to maintaining family relationships (or not), my FIL simply goes along for whatever ride his wife directs. My FIL is cordial and affectionate enough when it comes to me; I don’t think he harbors any resentment or ill-will. I do think he is simply tired of fighting in his own home so he tunes out or goes along. The net result is the same —ineffectual.

The last time my in-laws saw Nikolas was June of 2006; it was a few weeks before he started school. At that time Nik wasn’t yet standing on his own and he wasn’t doing much communicating; he was a happy little boy in his own world which, sporadically, he would open up to others. On that last visit, he wasn’t terribly interested in his grandparents and, frankly, they didn’t know what to do with him. They were at a loss as to how to be with him.

I understand that uncertainty may have fueled much of my MIL’s misinformed and intrusive inquisitions —about Nikolas and how we are raising him —in the intervening months since that last visit. Perhaps, as my husband once suggested, she was afraid of what she would see when she came to visit and so she stayed away. Meanwhile, she created an alternate reality in her mind —a reality which was far from what we experience with Nik and of Nik each day. In spite of our assurances that Nik really is making tremendous progress, I think my MIL could not bring herself to believe our words. Yet, on the other hand, she could not bear to see for herself if her imagined reality were to be true.

My logical mind understands and appreciates the difficulty of her dilemma —truly. But the proud mama, the loving wife, the woman who wants to share her bounty with the world has such a hard time not being angry and resentful.

My son, it seems, would have it be otherwise between us.

From the first moment my in-laws saw Nikolas on Tuesday morning (he was already asleep when they stopped by Monday night), my hackles were raised; I was in my full protective-mama regalia before they even walked in the door. As I sat in the loft, making notes from a conference call I had just completed, I could hear my MIL talking in a baby voice —in the third person —to Nikolas (who was in his seat having his lunchtime tube feeding), “Ooh, what songs does Nikowas know?” “Grandma’s so happy to see Nikowas!” “Grandma wants Nikowas to use those toofies to chew-chew-chew.” Nauseating. Infuriating. I could hear my FIL asking Niksdad, “Does he sit in that chair all day? Can he roll around on the floor? Can he crawl yet?” I had to wonder if they even listened to all those weekly phone calls from their own son, Niksdad, telling them about all of Nik’s milestones and progress. Did they even look at the pictures we’ve sent on a regular basis?

To say that I could feel the visit rapidly sliding downhill would be an understatement —a gross understatement.

Yet, somehow, after a crappy partial day in which Grandma cooed and talked baby talk between bouts of grilling us about “Will he ever…” or “Do you think he can…” and “Have you tried…” and a near family meltdown over a miscommunication —in which no one was blameless —we managed to go out for a nice meal together to celebrate Niskdad’s birthday (which is today). I was so upset that I really didn’t want to go but I love my husband very much; when he told me it would mean a lot to him if I went —that it wouldn’t feel like a celebration without me —a swallowed the lump in my throat and went anyway.

I don’t regret the decision. Somehow, in the intervening hours between the cloying baby talk and having my buttons pressed, my in-laws found their equilibrium with Nik. The baby talk stopped —well, for the most part —and they really began to engage with him. As you can see in these pictures, Nik rewarded them richly for their efforts. They both expressed such surprise —tinged with grandparently pride —at all the things Nik is doing now. They marveled at his problem-solving aptitude, his laughter and music, his independence in so many things; they were bowled over by his charm. Finally.

When Grandma and Grandpa stopped by today to say their goodbyes, Nik was sound asleep (see adorable proof here). It gave my MIL a chance to spend some time talking with Niksdad alone. She made it clear that she didn’t want to be interrupted so they went to the living room. My first reaction was that I was miffed; I thought she was snubbing me in my own home. Since we live in a small townhouse and my MIL wasn’t making any effort to speak quietly, I eavesdropped —shamelessly. I don’t regret it one iota. In fact, I am so grateful that I listened; I gained tremendous insights into some of my MIL’s attitudes and behavior —and why she has nearly severed all ties with her siblings. The latter fact has baffled me for years and Niksdad has never been able to shed any light either.

Since it is not my story to tell, suffice to say the story my MIL told left me stunned and horrified —and feeling much compassion for her as a woman. I know it doesn’t change the behavior she has exhibited through the years, but all of a sudden I felt like I had been looking at her like one of those Rorschach ink blots and only seeing one thing. What I overheard today gave me a different picture and made me pause to think about her actions and attitudes more as her defense mechanism. Much like I often do with my own son, I had to put her behavior into a different context than the norm I expect in most relationships.

When Nik awoke, he was ecstatic to see his Grandma and came right over to climb up on her lap to play. I watched them laughing —both of them chortling with glee —as they had their little love fest. Nik’s Grandpa even joined in —in his own stoic way. I took lots of pictures and was struck with awe at the unfettered love and joy I saw through the lens. The tenderness with which Grandpa stroked Nik’s cheek reminded me of my own husband; a man of few words most times, he can convey so much love and tenderness with a touch or a look —whether it be toward Nikolas or me —and it melts my heart. I could see the family connection being made before my very eyes.

It’s been a long, long time coming. I know there will always be the same behaviors from my MIL but I have new knowledge —a different context in which to see her. I also, apparently, have the world’s most charismatic child —a spirit capable of healing tremendous rifts in people’s hearts and souls and of teaching important lessons to those who are willing to listen and learn.

When the student is ready, the master appears ~ Buddhist Proverb

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See, it’s not all bad around here…

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Nik’s Autumn Almanac

From the dew-soaked hedge creeps a crawly caterpillar,
When the dawn begins to crack.
It’s all part of my autumn almanac.
Breeze blows leaves of a musty-colored yellow,
So I sweep them in my sack.
Yes, yes, yes, it’s my autumn almanac.

“Autumn Almanac” by Ray Davies, The Kinks

Yesterday, the sun rose brightly on a crisp, dew-sparkled morning. The call of early geese carried on the wind. Leaves swirled from the large maple in the neighbors’ yard, drifting down to grace our late summer garden with a scattering of golden yellow, flecked with brown and red. The cats lazed on the window sills in the dappled morning light as our household awakened lazily without the aid of alarm clocks or a crying child in the dawn hour. Seven o’clock. Blissful awakening.

It felt like a good morning for a family adventure. So off we went in the picture perfect autumn weather to the Fall Festival held by the same folks that hosted the Peach Festival in August. It was busy in a small town sort of way —just enough to entertain but not too much to overwhelm.

There were children’s mazes made of hay bales, a giant maze cut through the corn fields, pumpkin painting (which we skipped as Nik isn’t quite into that yet), a petting zoo, hayrides and pick-your-own-apples and pumpkins, as well as corn and soybean “sandboxes” and fresh pressed apple cider.

Nik exhausted himself in the fresh air and sunshine. His favorite things were the sandboxes —total sensory delight, and the animals.

Nik made fast friends with Paddy, a five week old calf. It was a mutual affection, apparently. It was so wonderful for us to watch Nik really engage with Paddy; we actually had to keep him from climbing on top of the poor calf!
The change we saw from the last time we were here was phenomenal! Nik was so much more aware of his surroundings and of the other children.

And he even managed to bring home about a quarter cup of beans; imagine “The Princess and the Pea” —in his shoes! They somehow got up under his pant leg and down between his orthotics and his foot. OUCH. Poor kid. No wonder he didn’t want to walk or stand after he got out of the beans. And here we thought he was just tired. But that wasn’t as bad as another kid who I watched end up with a diaper full of beans!

And, reminiscent of the peach ice cream encounter in August, Nik managed to surprise us by tasting and actually enjoying fresh pressed, mulled apple cider. Ordinarily, Nik won’t drink anything but water. If he has a single sip of juice or milk he pushes the cup away and makes a face as if I poisoned him. My drama child! Not only did he not push the cup away, Nik actually kept pulling my hand back to give him more. Needless to day, there’s a half gallon container of the stuff in my fridge right now.

I love the autumn; it always feels like a fresh start to me. And after all we’ve been through recently, we’re certainly ready to put it behind us and move on.

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

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

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

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

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

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

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

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

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

This was a shared moment —a relationship.

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

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

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

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

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Time check. 3:30 a.m. Nik’s been awake for an hour —alternately playing and crying in his crib. The kind of cries that let me know he is not in any real distress. Just enough to keep him awake —and me, too. Well, that and the toilet which has chosen tonight to run incessantly. My only secret, sadistic pleasure has been waking Niksdad to fix it. I have already thrust my hands into the tank to fix the valve no less than three attempts in 20 minutes only to crawl back in bed and hear the tank draining and refilling again. I am not sure which of Dante’s circles this is. Crying child, running toilet, and a spouse who can sleep through the arrival of the second coming!

Having been in Nik’s room once in the past hour to comfort and console —and provide a quiet toy to distract him from thoughts of climbing out of the crib —I am waiting this one out. I don’t know if it’s a change in barometric pressure, or what, but his ear is acting up again. Not in an ear-infection-kind-of-way; rather, more of the same indeterminate pressure which causes him to rub and flick at his ear and which brings him some sort of intermittent pain. There is swelling around the lymph glad and, so help me I am not crazy, around the mastoid. It comes and goes and never seems to be present when we are visiting one of the myriad doctors Nik sees. I guess the surgery wasn’t the magic answer we were looking for.

3:40a.m. I listen to my son’s cries escalate to a wail of pain and frustration (is he crying for both of us, I wonder), as I can do nothing to ease his discomfort. The toy has long lost its appeal and Nik is simply tired and in need of that elusive balm of sleep. I cannot even go in to console him and rub his back as I used to do. Now, he wants to stand up and cling to me, begging me to release him from the prison of his crib. I am no longer naïve and hopeful that he wants the comfort and safety of Mama’s embrace. Alas, he has grown wily and I have become jaded. Unless I am prepared to take him downstairs to start our day, I dare not lift him.

Instead, I sit here at my keyboard feeling supremely guilty and more than a little frustrated as I listen to the wailing and thrashing which signals his discomfort, his frustration. His utter exhaustion.

At 4:00 a.m. I cave. When I enter his room, he is happy to see me. I feel guilty for raising the false hope of release. He begins to clap my hands together —one of the ways he requests play time. Instead, I smooth his hair, rumpled from his rolling to and fro in the crib. I whisper gentle soothing words to encourage sleep and relaxation. Failure ensues.

As I leave his room, the wailing and thrashing begins anew, this time with the tenor of extreme frustration. I know that if I wait it out he will eventually fall back to sleep. If only I could do the same.

I look in on my husband. He is sleeping blissfully —ignorant of the drama playing out down the hall. The struggle of maternal instinct versus parental control. Sleep versus play. Damn those ears anyway. Nik’s for causing him such distress and disruption. Mine for being unable to ignore the primitive pleas of my child. My husband’s for being able to sleep through it all. I m not even sure he opened his eyes when he fixed the toilet!

Never before have love and resentment balanced on so fine a hair. I am torn between my need for sleep and caffeine. Two roads…which shall I choose? The choice truly can make all the difference in my day.

4:25 now. It sounds like Nik is settling back in. The wailing is reduced to quiet moans and sporadic whimpers. Quiet. Then the sound of music from his toy. Damn. The boy is so tired. I go in to take the toy away so he won’t roll over on it and activate it as he is drifting off to sleep. He sits up and leans his head against the side of the crib. I can see the shadowy outline of his little form begin to droop and slump as he fights the pull of slumber. “Please, God, let him sleep” I pray. I am so weary at this point; I want to climb into the crib myself. Caffeine is looking like the only way I will ever make it through this day.

4:35 —Is he out? Taking a leap of faith, I stagger the few feet down the hall toward my beckoning bed. Whimper. Moan. Wa-ai-ai-ai-il! Followed by more whimpers. Followed by whines. SHIT!

4:45 a.m. —Clutching the monitor in my hand, I stumble down stairs to start the coffee. The faint blue glow of the light on the coffee pot lures me like a siren. Looks like caffeine wins out after all. The monitor is eerily silent so I check the volume. He’s out. Asleep. Joyous reprieve!

Coffee forgotten, I stumble back upstairs and crawl into bed. I awaken briefly an hour later to tell Niksdad that he is to let Nik sleep until he wakes on his own and to wake me…well, never! He gently kisses my forehead as I drift off again. I awaken three hours later to find my son awake, dressed and fed, and fresh coffee in the pot.

I am in love once again.

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The sun will rise as sure as there’s a day time
Don’t worry ’bout a thing….in time you’re gonna see
Your life is everything you make it
The hard times never last
Trust in your heart and don’t look back

“It’s Gonna Be Alright” (The Cheetah Girls)

As summer begins to wind down and the start of the school year is around the corner, my heart has been heavy at the prospect of Nik’s upcoming IEP. Niksdad and I already know that school is not willing to budge on some things —most notably a one-on-one paraprofessional for Nik. Their stance is that Nik is at an age where he needs to be able to generalize his learning and not rely strictly on one individual. The concern they raised, in our non-IEP meeting in July, is that Nik is smart enough that he may find ways to not pay attention to the actual teacher but look to his para for validation instead. In addition, the principal feels very strongly about educating the entire staff about Nik’s subtle seizure activity and promises that there will always be eyes on Nik. The principal is new to the school as of early July so I have to cut him some slack for his incredible naiveté. I know from first-hand experience that there are not always eyes on Nik and that there are times he has been virtually ignored by “seasoned” paras who were sitting right next to him in circle time —singing and gesturing their hearts out as Nik sat between them, ignored and not participating.

I know that my son has some very significant educational challenges and that the teacher really believes Nik has incredible potential; she just doesn’t have a clue how to “unlock it” (her words). I have tried my best to be helpful in relating my own observations and insights about what has worked with Nik. I’ve had countless conversations with the OT about my suspicions about Nik’s sensory issues being at the root of his extreme attention and regulation challenges. For whatever reason, my words seem to fall on deaf ears. This has often been the case with medical professionals as well; Niksdad and I persist and persist until, finally, Nik reaches such an extreme state that the doctors give in and investigate the things we’ve asked them to. Many, many times we have been proven right.

Righteous vindication doesn’t feel very good when you are watching your child suffer. Or regress in skills or fall further and further behind his peers when he once made such rapid progress that therapists were amazed at how quickly he learned.

With those things in mind and with the rapid and marked progress Nik has made in just a couple weeks of intensive work with his new OT and PT, Niksdad and I have decided it is time to pull Nik out of school. I’ve checked all the legalities with the Department of Ed (DOE); Nik isn’t required to be in school until he is five. Even then, it doesn’t have to be a public school, just “an educational program.” Our situation is such that Nik qualifies for significantly increased services through his Medicaid so we don’t have to worry about too many out of pocket expenses for therapies. As it is, the insurance has already authorized a 100% increase in his OT (from one session to two per week), a 200% increase in his SLP, and a 300% increase in OT. This means that Nik will now be getting the level of services which were recommended by multiple independent evaluations done over the past 12 months.

Sure, we could keep Nik in school and add the therapies on top of that, but we have to weigh the cost of that against the quality of life for Nik and for us as a family. He is simply too young to be spending every waking hour in some sort of rigidly structured activity. Seven hours of school each day —20% of that spent confined to a chair for tube feedings, plus another two hours of therapy daily (including travel time) —home just in time for dinner then bed (since Nik doesn’t nap much at school and cannot stay up much past 7p). Then throw in the time missed from school for doctor’s appointments…It’s just not realistic to expect ANY 3 ½ year old child to tolerate that much without some serious PLAY —let alone my little Energizer Bunny to the Nth Degree. The more we thought about it and talked about, the easier the decision was to make.

To say that Niksdad and I are excited at the prospect of Nik’s inevitable progress would be a gross understatement. Plus, the idea of not having to wrangle with school over every last little thing —the classroom staff about feeding, nap, and communication about Nik’s day, the school nurse over every last little tweak to Nik’s tube feedings, finding out the hard way that they ran out of diapers or some other supply for Nik, etc —feels like another headache mitigated.

I know it will be a challenging transition for us —Niksdad begins his nursing clinicals in another couple of weeks and will have very little free time (especially after putting in hours at Home Depot, too!) and I may feel slightly (a lot?) overwhelmed at first. But it also feels a bit like I finally get a shot at the “new mother bonding” that I didn’t get when Nik was born. By that I mean that he and I will sort of feel our way through it together. We’ll figure out a new schedule, new activities and adventures. I have already begun to set up a regular therapy schedule for Nik — the same time each day for OT and PT —and we’ve gotten insurance approval for the developmental playgroups, too! Imagine —built-in play dates! I have visions of finally being able to do the things that “the other moms” get to do —Mommy and Tot swimming, music class, toddler story hour at the public library. Walks in the park with other moms, the occasional shopping trip with a friend and her kids — things we couldn’t even dream about doing before because of Nik’s school schedule. And it’s not like I will get another chance at this gig…

I think I may become less angst-ridden about my own future as well. Niksdad and I had a long discussion about him being the sole income earner; he finally gave me “permission” to let go of my guilt about not contributing financially. I no longer have to think about rushing out to get a job —any old job for income — unless or until the time comes when Nik is ready to go back to school and I have an idea of what will make me happy. Have I mentioned how much I love and appreciate my husband? I DO.

I will no longer have to schedule my workouts around Niksdad’s or Nik’s school/work schedule quite as rigidly. I now have the freedom to put Nik in the childcare area while I work out and get a little “me” time. What a concept! I know my own mother is anxious that I will become more overwhelmed and exhausted, but I truly feel this is the right decision for us.

We will figure it out and find a new equilibrium. Just as we did in those awkward and terrifying first days at home after our 209-day NICU stay. I think we’ve done fine so far. In fact, I’d say we’ve done very fine, indeed.

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