Archive for the ‘family’ Category

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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As my little hometown grows up and becomes overrun with new housing developments and shopping centers, it is becoming increasingly rare to find celebrations of the old ways, the agrarian culture, and the simpler times. Sigh. As Rascal Flatts sings, “I miss Mayberry…”

One of the neighboring towns hosted their annual peach festival this weekend to commemorate the town’s once rich agricultural history. You see, Delaware was one of the top peach producing states in the union until the dreaded peach blight of eighteen-something. Seriously. Nonetheless, there are a few large farms around doing a booming business; one of them always hosts a huge customer appreciation event complete with music, hayrides, a small petting zoo, and free peach ice cream cones all day long.

So, Saturday morning found NiksFamily heading out in the sweltering, muggy air to embark upon an adventure —to expand our cultural horizons. It was, I think, the start of a new family tradition. We ventured into the town center —all two blocks of it —to check out the official peach festival (which is separate from the event hosted by the orchard). The town’s single train station —long ago converted to the town hall —doubled as the main stage on Saturday. Heck, it was the only stage!

We wandered the street along the edge of the railroad tracks, perusing the offerings of myriad vendors. The local high school drum corps playing in the background, Niksdad and I held hands as we wandered and sweat. Nik wanted to walk a bit so we took turns holding his hand for support. When the heat became too much to bear, Niksdad hoisted Nik onto his shoulders. Now, I have been to many “street fairs” when I lived in NYC and near San Francisco —the kinds with a gazillion different vendors and umpty-ump musical acts (some big names) and an air of highly organized chaos about them. Saturday’s festival was nothing like it.

There were tables of crafts and clothing, jewelry and hand-sewn handbags, potpourri and wood art. And the baked goods. Oh, the baked goods. None of the slick, mass produced bakery fare here. No sir, each and every pie, cookie, loaf of bread and you-name-it —all home baked by the ladies of the XYZ church auxiliary. Such a fierce competition between them, too! I found myself getting teary as we wandered; I suppose I could claim it was from the heat or the sun in my eyes. The truth is, I felt an odd connection to another time; I felt nostalgic for a life I’ve never known but always dreamed about. I felt like time must have stood still for this one day, just for me. And that was just the beginning…

After melting under the morning sun, we got in the car and headed up the road to the farm for the customer appreciation event. Now, my mother swears she use to take me to this farm as a kid —to pick out pumpkins; I have no recollection of this whatsoever. I am sure I would have remembered such a beautiful farmstead; their event was so much nicer than the festival we had just left. There were huge tents —set up under gigantic shade trees which have to date back well over 150 years —with volunteers serving up refreshing ice cream full of thick chunks of yummy peaches. Mmmmm…There were hayride tours of the orchards, a small petting zoo —kind of a rag-tag collection of family pets and farm animals —and a musician playing wonderful background music that you could sing along to. Perfect.

I don’t think words can do justice to the fun we had. Nik wanted to walk around holding onto one of our hands or he wanted to scoot along on the ground. Knowing how much Nik thinks he wants to eat versus how much he actually does (rather, DOESN’T) eat, I decided to see if Nik would deign to take a lick from my ice cream cone. He’s never really cared for ice cream before; it’s too cold and too wet for his liking.

Apparently, the secret is all in the cone! Not only did Nik enjoy the ice cream, he wanted to have his very own cone and “yelled” at me when I tried to share with him. He actually looked me in the eye, pushed my hand away and said “Ng, ng, ng, ng!” which is how he says “no.” Nik didn’t really want the whole cone, he just wanted the control. But the fact that he ate numerous bites —licks, really —of peach ice cream was pretty monumental. Especially because he sat on the ground next to me the whole time and even tried to feed me a time or two. New stuff. A big deal.

Ice cream finished, we wandered a bit and ran into some people we know including one of the para’s from summer school. She was pleased to see Nik; he actually acknowledged her presence and held her hand for a moment. It was a sweet moment for all of us.

From there, we found the petting zoo. Nik didn’t seem to really recognize that there were animals there; perhaps it is because he hasn’t had much exposure up to this point? There was a two-day old calf, some baby bunnies, a couple of pygmy goats, and a dog. An interesting collection to be sure, but it was just enough to captivate the smaller kids. Once Niksdad helped him pet the calf, Nik seemed to catch on a bit.

By lunchtime, it was clear that Nik was beginning to fade. We gathered up our dirty little ragamuffin —with his dusty shorts and his dirt-smeared face he looked like the most typical three and a half year old boy —and began to head to the car. When I heard the song that was paying, I had to stop and dance with Nik. How could I possibly resist the lure of “American Pie?” I scooped Nik up and whirled him around as I sang to him —and he looked me in the eyes, threw his little head back and laughed! The more I sang and whirled, the more he looked right at me, smiling and laughing and clapping his hands. I could have died on the spot and gone with a smile on my face!

Yes, definitely an occasion to be repeated every year!

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In case anyone’s been worrying about my absence over the past few days —all is well in Niksworld. In fact, you could almost say it’s been idyllic. It is kind of amazing —when I let myself remember to do it — that when I put something out to the universe, God, my subconscious —or whatever one believes in— things do have an uncanny way of unfolding.

My recent posts about my brief existential crisis, and the outpouring of support and warmth from so many readers, really helped to crack me open a bit. I don’t think I even realized how guarded I was being —with my time, my energy, and especially with my heart. Perhaps it was simply fatigue, or perhaps it was a phase of a larger, natural cycle which is occurring in my life and I couldn’t see it. Whatever it was, it feels like it’s on the upswing now!

These past few days have been absolutely phenomenal in every single way I could possibly describe; perhaps I should go buy lottery tickets tonight? (Only half kidding…) I’m not even sure where to begin to relate all the things that have happened over the past week; forgive me if I ramble in a somewhat disjointed fashion from topic to topic.

First of all, things with Niksdad have been peaceful and relaxing. We’ve spent some great time together working on some household things both big and small, catching up on a bit of sleep, and simply spending time together both with and without Nik. My sixteen year old niece even volunteered to babysit last night — FOR FREE! Yes, we had a date! An honest to goodness date.

Niksdad shaved and I even wore makeup and did my hair! Not that we don’t do those things on a fairly regular basis —just not always for each other or with such intention. We got tickets to see The Bourne Ultimatum and planned on dinner before hand. Nothing fancy because of the time constraints, but it was out and it was without Nik! I won’t spoil the movie for anyone but I can tell you that we loved it! From the minute it started, we were clutching each other (well, maybe me a little more than him and maybe him for different reasons?) and the adrenaline was pumping. AWESOME. Oh, yeah, Matt Damon is sexy, too! Anyway, it was a wonderful night and it felt “normal.” I don’t mean normal in the sense that our daily lives feel abnormal; I mean “like the rest of the world” kind of normal. As in, “Ho hum, isn’t this so UN-extraordinary that it’s almost boring” kind of normal. We didn’t even talk about Nik!

It’s been sort of like that all week, though; like the spark has been rekindled a bit and the subtler expressions of affection are surfacing more. Even when we are together as a family —which we’ve been a lot this week —the feeling is present. We haven’t made it to the beach but we have gone to the pool several times. Friday we went to the “Can Do” playground before going to the hospital for appointments, and Saturday we went to the peach festival. (Each of the latter two events merits its own post…coming soon!) Niksdad even turned down a chance to work this weekend “Just because;” it felt great to have him put us first again.

Like I said, it’s been a full week for us here. Nik, too, has been having his own momentous happenings. The kind of things that parents of “typical” kids might miss because they seem so “normal,” so expected.

We had someone come to the house this week to do an evaluation of Nik’s eligibility for services through the Division for the Visually Impaired now that he has been discharged from the “Deaf-Blind” program. When the woman, Ms. S, arrived Nik was playing by himself in the family room. As soon as Ms. S. walked into the room, Nik’s attention was riveted. He actually stopped playing, scooted over to her and pulled himself to stand using her legs. He looked up at her with a big smile and reached for her hands to play “clap hands” as he does with Nanny. Ms. S was a good sport and played along. I was surprised to see Nik take an active interest in someone besides the little boy in the mirror! What happened next floored me.

Nik, still standing —he is getting a bit steadier with each passing day —reached out to take Ms. S’s hand in his and led her to the sofa to sit down. Such the gracious host! He then proceeded to climb up on the sofa and sit next to her to continue their play. Ms. S did not realize it but she had been given a signal honor! Nik has never done that before.

That same afternoon, when we went to the pool, Nik was very aware of other children nearby as he cruised along the edge of the toddler pool or sat splashing happily in the water. Though he didn’t actively seek them out, he watched and seemed to perk up when one approached him. He even flirted with another mother! I wonder if he could sense her friendly curiosity about this happy-go-lucky child splashing and singing.

She wasn’t simply another mother at the swings; this woman was —is —a kindred spirit. She proudly introduced her beautiful 10 month old son with Down Syndrome and we bonded quickly. We shared an understanding that the path we have been placed upon in mothering our different children is not one easily accepted and understood in our smallish community. We lamented about the school system and some other shared frustrations, but mostly we talked about the special joys of our children and the moments we never want to take for granted. The whole time, Nikolas climbed all over this woman, playing with her sunglasses, her son’s float, her daughter’s goggles. The woman not only did not mind but encouraged him and praised him for being so smart and engaging. It felt like the hand of God had reached down to touch my heart. I didn’t get the woman’s name or phone number and I may never see her again, but I will remember her for a long, long time.

Thursday was a very eventful day. We started the day with a four hour eye appointment —ugh! I had a session with my trainer at the Y so Niksdad took Nik to the eye clinic. It’s not an ideal set up; you have to arrive by a certain time and be prepared to wait with lots of other families. Still, the doctor is wonderful and she’s the same one we would see if we drove an hour each way to her private office. So we trade off the hours in the car for the hours in an office; at least in the office, Nik is able to move around and engage with his environment in a way he cannot in back seat of the car. Anyway, it turns out that Nik did great at the clinic —in spite of having to be restrained to have his eyes dilated. He was very social and incredibly patient!

That afternoon, after the already too long eye appointment and no nap, Nik had OT and PT. I worried that it would be too much and that Nik would simply fall apart. Oh contraire! Nik probably had the best session ever. Ever. As Miss D, the OT, brushed Nik and sang silly songs to distract him, Nik gazed adoringly at her! I was rather jealous, I must confess! Nik was putty in her hands as she did joint compressions and deep pressure. When Miss D put Nik in the ball pit, he not only grinned but he initiated a game of “you hand me the ball and I’ll throw it out of the pit and laugh myself silly” with her. Oh, the stabbing pain in my heart as I watched my son flirt and giggle and interact with Miss D; I don’t know if it was from envy or pride but it ached.

As if that weren’t enough, the entire session was filled with my exclamations of, “Miss D, he’s never done that before!” Even Miss D was surprised at how well Nik did with the swinging, the ball pit, crawling through the tube, pushing the cart, etc. He even let her put him in the big yellow gigaball —TWICE —without complaining. He hates the texture of smooth, sticky, inflatable plastic but he did it for her! He even graced her with a few independent steps. I am not sure if I want to hurt Miss D or adopt her! It was amazing, simply amazing.

Miss D handed Nik off to Miss T, the PT, for their session. It wasn’t quite stellar but Nik did some pretty good stuff. I can tell that he kind of falls apart after about 15 minutes with Miss T. I cant’ tell yet if it’s something about the dynamic with Miss T or if Nik is simply mentally fatigued by then. I think it’s the latter; there’s nothing about Miss T that Nik seems to object to —except for the fact that she’s not Miss D!

In the midst of all this wonderful-ness, I got a call from my husband telling me that my father had been in a car accident; he didn’t know more but was on his way to the scene with my mother. My heart lurched and my heart raced at the idea of my Daddy, Nik’s Granddaddy, in some mangled, broken state. I calmly told Miss T that I might need to go; Niksdad was going to call me with more information as soon as he got there. DAD IS FINE. Whew! To make along story short, he misjudged some distance for a turn and got hit broadside by a truck.

God must not want my Dad yet, because the circumstances of the accident are pretty freakin’ miraculous. The trucker was near his home and knew that it was a bad stretch of road so he wasn’t going very fast (about 40) —the local cops and EMS call the area “Helicopter Corner” because they are always having to Life Flight someone out of there. Amazingly, the point of impact was exactly on the door post behind the driver’s door. Another four to six inches toward the front and it would have been a very different outcome. Dad, we think, must not have seen the truck until just before impact. That is the only way I can explain the fact that he walked away from a totaled car without so much as a single twinge of discomfort. None. He’s been checked over from head to toe by doctors and there is no sign of any injury whatsoever —unless you count the wounded pride. 3 days later and Dad still has NO PAIN. Amazing!

So we’re living life in the fast lane here (ha ha). Big stuff. Good stuff. And it just keeps coming! I feel like I should put up a sign on my blog that says “Watch This Space” as I have more to share! Niksdad is working tomorrow night (yeah, his schedule got changed again) so I’ll have more time to write.

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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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You can’t always get what you want
You can’t always get what you want
You can’t always get what you want
But if you try sometimes, well you might find
You get what you need.

Mick Jagger/Keith Richards

I love my husband very, very much and I would be the first to complain that we don’t get nearly enough time together. Between his going back to school to become a nurse anesthetist (we still have a few more years to go) and working part time, Nik’s school schedule, Nik’s doctors’ appointments, and the general stuff that needs to get done around the house…well, let’s just say there’s never enough energy to go around for both of us at the same time. When he’s up, I’m down and vice versa.

With some of Nik’s special needs —most glaringly, his feeding tube and the fear it seems to invoke in any non-parental caregivers —it’s quite challenging to find a babysitter very often. My parents are pretty good sports though and do come over once in a while after we’ve put Nik to bed, giving us a chance to slip out for a movie once a month or so. Still, it never seems like enough.

Just the other night, I told Niksdad that I really missed “us.” Now I look back on all those times we used to take for granted when we could hop on the back of his Harley and ride off to a vineyard for the day, go for a drive in the mountains, a weekend in the country, a late dinner and a movie followed by an even later (decaf) coffee. Sigh…those days are gone. Long. Gone. Forever.

I cried on his shoulder last night about how we never have time to even just touch anymore. I’m not talking sex (don’t even go there!), but the affectionate embraces we used to share as we made dinner together or sat on the sofa watching a movie. All the subtle cues that remind a person they are loved and cherished. Now, our lives are so full we barely even have time to do things together that aren’t some sort of task on a to-do list. If it can’t be “divided and conquered” we don’t bother to tackle it anymore. Sad, but true.

Now, lest anyone think the love is gone, the flame has died, etc, I think I should note here that we have a tremendous amount of love, respect, trust, and affection for one another. We just seem to be sadly lacking in any modicum of mental, physical, or emotional energy left to do more than kiss one another and assure each other that “I love you, Darling,” or “I love you, too, Honey. G’night” before we pass out at the end of each day. Only to wake up six hours later to repeat some variation of the same theme the next morning.

I know my husband loves me and he is working damn hard to create a new life for us —not to mention a fulfilling career for himself. And I know that what I do as a mother to our son is irreplaceable. Niksdad and I did a rough estimate a couple of years ago and determined that, in order for me to work full time outside the home, I would need to make nearly $200k a year to cover it the additional costs incurred for childcare and nursing care. Niksdad likes to remind me of that once in a while; I guess maybe that’s his way of letting me know that he appreciates everything I do.

Still, I really miss our time together as a couple. I don’t know what it’s going to look like as we get further and further into Niksdad’s nursing training —longer class hours and clinicals on top of that, plus the study time —and I worry that we will drift apart. Not for lack of love and commitment but for lack of energy and creativity. For lack of something in common anymore that isn’t our son. My fear is that, as Niksdad grows and changes into his new career, I have nothing to show in my life besides being Niksmom.

Have you been there? How did you weather it, what did you do to keep things alive in the face of utter exhaustion and shared concern over your child/ren? How did you get out of what I call “the roommate rut?”

I wrote all that the other night and didn’t have the cajones to post it; it somehow felt too personal and maybe would make someone (besides me) uncomfortable. I am my own worst censor —always worrying about someone else’s needs first, even when I write sometimes. Sigh…

Niksdad headed off to work this afternoon. About 40 minutes later he came strolling through the front door looking baffled. Seems his work schedule was changed and no one thought to tell him. He works part time at Home Depot as he is going to school. We have been fortunate enough to be able to take some equity out of the house so his income isn’t mission critical. Well, it is in the sense that it will help us make the money stretch farther, but it isn’t in that we can certainly afford to pay our monthly expenses without it.

So, now Niksdad is completely off of work for the next two weeks. Hmm…I sure hope my lamenting about not having time together didn’t misfire in the universe… The old adage “Be careful what you wish for” sure applies here!

So here I’ve been grousing about not enough time together and all of a sudden —WHAM! Now what do I do? I mean, there is such a thing as too much of a good thing, right? How do I strike a balance between quality time with my husband and us wanting to kill each other from being together 24/7?

Yeah, I know…I’m never satisfied. (Laugh) (Um, file that under one of the ways in which Nik and I are alike?)

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