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“Education is only a ladder to gather fruit from the tree of knowledge, not the fruit itself” ~ Anonymous
For months, I’ve agonized over finding the right materials, setting up the right environment, planning the right curriculum to home school Nik —to help him “get ready for school.” (…as if that were really an option right now?) It has been so overwhelming that I have dragged my heels and gotten stuck in analysis-paralysis to the point that I have had anxiety attacks (well, moments anyway) about whether we made the right decision in pulling Nik from school all those many months ago. I mean, sometimes I’m just not sure I have what it takes to home school Nik and meet his needs.

This morning, as I sat in the loft checking email, reading blogs and doing a bit of research, I started to really listen to Nik as he played down in the family room. His laughter and songs bubbled up over the balcony; I could see his smiling face with my ears. His each and every little sound is so richly nuanced that I cannot begin to imagine how much this child of mine has to tell the world. I listen to him admonish the pillows on the sofa or his scooter for not cooperating with his grand plans —whatever they may be. I listen to his enthusiastic singing of his favorite parts of the ABC song from Signing Time; it’s always a fair indicator of his mood since he looooves that song.

Feeling incredibly guilty that I haven’t yet struck upon the perfect combination of curriculum or methodology, but bolstered by yesterday’s foray into the local über-discount store where I found some preschool oriented materials cheap, I decided to simply go play with my son.

As Nik climbed all over me and we laughed and bounced, as we tickled and giggled and he asked for “more, more, more” with his flying hands and laughing eyes, it occurred to me that we were in the middle of a learning experience. When we play together, when I prompt him to use his language and communication skills, when he looks me in the eyes laughing and smiling, he is learning how to interact with others, how to express feelings, how to engage another person’s interest, how to ask for what he wants.

When I tell him “No more, Mommy’s all done,” he is learning about boundaries and limits and how to respect them; sometimes it works and sometimes it doesn’t, but he’s learning.

When I introduce a new toy —a small red foam ball and brightly colored bowling pins —he is learning the skills of observation, exploration, and discovery. Of course he does not do what I expect him to do —in spite of my showing him a few times. Instead, he laughs and throws the ball and chases it around the room; he tries to mouth the pins or stack them or link them like beads.

Watching him trying to sit on the six inch round foam ball time and again —as he does with his yellow playground ball which is three times the size of the foam ball, I laugh and shake my head thinking he’s just being silly. Then it strikes me that he is learning through experience about big versus little, soft versus hard. As he tries to bounce the red ball and it doesn’t go very far, he is learning about how different physical properties act. He rolls or kicks the ball on the floor and he is learning fine and gross motor coordination, visual tracking, and how to aim at another object.

It finally occurs to me that so much learning takes place in our household every minute of every day if I but step back to see it. If I allow myself to let go of the expectations, imprinted on my consciousness by so many years of traditional school room learning, and the goals I think are important, I can watch and learn from Nik where he needs to go next. I can follow his lead and use the skills he already possesses to build a strong foundation for him to continue his own journey of exploration, self discovery and learning. And I can incorporate his journey into mine.

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

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How much time do I spend in turmoil, wailing and gnashing my teeth, and wondering—

“Will he ever…?”
“Can he even…?”
“Why doesn’t he…?”

If I stop to remind myself that Nik does things in his own time, I am able to let go of the anxiety; Nik has shown me countless times that he is capable but he must find his own pace, his own rhythm. And when he finds that groove —that perfect chemistry that only Nik can know —magic happens.

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So many babies who have some sort of special medical needs from birth or shortly after —be it from extreme prematurity, genetic anomaly, or some sort of trauma or insult surrounding gestation or birth— end up being given so many medications; this one to stave off infection, that one to keep the heart from stopping periodically, another one to help with digestion, seizures, blood clotting —and so on. The longer term ramifications of these medications can not ever truly be known though reasonably logical conclusions can be drawn from years of accumulated data. Still, when a parent is faced with life and death choices, it can be more than difficult to weigh and measure the long-term effects of a particular drug against the permanence of losing one’s child.

One is forced to make imperfect choices with little objectivity.

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Nik began having absence seizures when he was roughly fifteen months old. At first, we thought they were simple staring spells —Nik’s little way of finding respite from the bombardment of sensory input which accompanied the revolving door of therapists and visiting nurses to our home and frequent trips to one or another doctor in the cadre of specialists for all of his -isms, -itises, and –oses. It wasn’t until he was two that Nik finally got an official diagnosis and began yet another medication.

We went through a few different meds before we found the one which seemed to be the most effective with the least negative side effects. Little did we realize that the cure would also bring about a new problem. Apparently, as we gradually ramped up to the appropriate maintenance dose, Nik began to experience a marked sense of disorientation and dissociation. He felt funny; his balance and coordination —already grossly delayed—were significantly impaired. Because we had no basis for comparison, Niksdad and I did not realize it.

With each incremental increase in the medication Nik felt the fuzziness invading his head. Because he couldn’t tell us with words or signs, he told us in the only way he could; he began waking with screams and howls as he shook and swatted at his head in his attempts to make the sensation go away. We never made the connection between the medications Nik received at dinner with the behavior which occurred hours later. The onset was so gradual that we thought there must be some underlying physical issue; something else had to be causing our son’s horrific discomfort.

A month after Nik’s third birthday, another medication was prescribed for the headaches we all— the doctors included— were certain were from some other source. The second medicine enhanced the effects of the first; a vicious cycle ensued. As we continued to increase the dose of the first medicine, the second one magnified the intensity of its effects on Nik. Nik’s once rapid progress with gross and fine motor skills seemed to stall; his previously voracious appetite completely disappeared. The smiling, laughing child I knew wasn’t replaced with something or someone else but his attention span began to dwindle greatly. Nik’s autistic characteristics became more pronounced; they were there all along but they became the first thing we saw more and more.

Can I prove any of this beyond a shadow of a doubt? Unfortunately, no.

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Though he loves to brush his teeth at home —sitting on my lap as we sing a song about brushing — Nik has always hated our trips to the dentist. I don’t blame him; he has to be restrained by strangers who don’t want to take the time necessary to allow him to explore and find his comfort level. Unfortunately, we don’t have a choice about dentists right now so we try to make the best of it; I still have to argue though to be allowed to hold Nik on my lap instead of sacrificing him to their care.

Having discussed the issue with the neurologist and the pediatrician, we recently decided to try a low dose of diazepam (valium) to help Nik relax a bit; if he’s not anxious about it he won’t fight, right? Wrong, wrong, wrong. WRONG.

You know how some doctors tell parents not to give their kids Benadryl or cold medicine before flying because it can have the opposite of its intended effect? That’s called a paradox response. Yeah, that’s what happened to Nik when he got the drug in his system. To say it wasn’t pretty would be a gross understatement. Picture your sweet little child strung out on PCP (Angel Dust); you’ll get the picture.

I tell you this not to garner sympathy but to illustrate a point. At the peak of his medically induced rampage, all of Nik’s previous behaviors relating to his episodic pain returned in full blossom —and then some. It was one of the worst things I’ve ever witnessed; doubly so because I knew that I had caused it. I knew that it was simply Nik’s mind and body reacting to the horrible, disorienting sensations caused by the drug; the knowledge brought no comfort.

Sobbing as I drove the 54 miles home with my feral child, I had a flash of insight.

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When we tried to increase Nik’s second seizure medication a few months ago, in preparation for weaning off the first one —the one we worried was causing headaches— Nik’s episodes of horrifying pain and related behaviors drastically increased; his temperament became more volatile and his meltdowns more frequent and more intense. As soon as we realized this and we reverted to the status quo Nik began to improve. After numerous discussions with the neurologist, we decided we should try to wean Nik off of the second medication instead; it has more long-term negative effects on cognition and liver function.

The change was not instantaneous but it was rapid. As we gradually decreased Nik’s daily dose of the medication, we began to see marked shifts in Nik’s attention span, his interest in social interaction, and his desire and ability to initiate play. With each decrease in dose it seems we have witnessed a blossoming of Nik’s personality and intellect; his keen problem solving skills have reached new heights. Nik’s motor skills and communication have been catapulted to a level we had not expected to see for quite a while longer. But the best and most important change we have seen?

The complete cessation of Nik’s episodic, debilitating pain. (Knock wood!)

Can I prove this theory beyond a shadow of a doubt? No, again. But the explosion of cognition, motor skills, and rich social interaction that I see in Nik on a daily basis tells me all I need to know.

Sometimes magic happens all on its own. Sometimes it needs a helping hand.

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Yeah, I’m gonna take that mountain.
Ain’t nothing gonna slow me down.
And there ain’t no way around it.
Gonna leave it level with the ground.
Ain’t just gonna cross it, climb it, fight it:
I’m gonna take that mountain.

I was born a stubborn soul;
This is just a stumblin’ block;
I’m gonna take that mountain.
—Reba McEntire

I had hoped to post this on the 2nd. But, wow, life keeps coming at me faster than I can duck and dodge lately, it seems. This post has been “in progress” for a couple of days now. Had a few things keeping us on our toes recently, as you may recall!

What, you may ask, is the significance of the 2nd? It was Nik’s 45-monthiversary. Yeah, I know, you don’t usually count the months after they reach a certain age. But since Nik was born, on the second of every month I stop to celebrate the miracle that is my son. (For those of you trying to count right now, Nik was born on December 2nd.)

Last night, after Niksdad and I finished filling out a sensory profile for school (yay, they are finally taking us seriously about the sensory issues!), I sat down and typed out a quick list of some of Nik’s accomplishments over the past couple of weeks. I also did some serious reflecting on where we’ve come together as a family and what Nik has been through as a human being. I got so overwhelmed that I couldn’t write anything

Try as I might, I still cannot bring myself to write in any coherent fashion about the events leading up to Nik’s delivery by emergency C-section or of the 209 day s we spent in the NICU. Sure, I can share the specific statistics of Nik’s weight, length, Apgars (which were 9 and 7), his diagnoses, and his surgeries. I can share funny anecdotes about my son and interactions with other people. What I cannot yet write about —not even for myself — is what I went through. The emotions are too raw. Too real. Too close, still.

How can you capture the essence of one’s personal experience in the aftermath of being told not to plan or celebrate your child’s birth yet beacsue he may not even make it through the night? The implications of receiving such advice are staggering still. There are some things which one cannot write about until many, many years after the fact; I guess this must be one such for now.

In any event, I can —and do joyfully —share the incredible growth of my miracle child. Unlike the last party I threw, this one is full of joy and laughter —and overflowing with love and pride. I hope you’ll join in the festivities!

At one month old, Nik’s feet were a mere 1 ¾ inches long —smaller than the bowl of a common table spoon (not to be confused with a Tablespoon for measuring). His limbs were so small and fragile. Nik’s entire arm was the size of my index finger; my husband’s wedding band fit all the way to Nik’s elbow. He had gone through the first of his numerous surgeries at the tender young age of 19 days. Nik hated to have a wet diaper; one of the first things he learned to do was curl his foot to confuse the oxygen sensor attached to it. When he needed a diaper change, Nik would curl his toes and the nurses would come running to see what the alarms were all about. Even then, Nik was exhibiting some pretty amazing smarts!

Fast forward to today. Nik has been through numerous surgeries and spent way more time in the hospital than any person ever should. To date, he has spent 18.9 percent of his life in a hospital —most of it in one continuous stretch. That doesn’t include outpatient visits or ER trips. Do the math for your own life; if you had spent that much time in the hospital, what would your outlook on life be like? I am continually in awe of my child’s inherent sunny disposition and his utter confidence that he can do absolutely anything. And he can; the boy is unstoppable!

If you’ve been reading my blog for a while, you know that Nik has made some amazing strides recently —just surf my recent archives for plenty of examples! Here are the latest in what I hope will be a long, continuous line of “amazing and death-defying feats” from my little monkey:

Nik walks. Perhaps not with elegance or grace but certainly with verve and enthusiasm to spare. He climbs like a monkey! The sofa, the crib, the window sill…

We play so much more than ever before. The joy and laughter are no longer one-sided; when I can engage him, Nik participates fully and joyfully.

Feeding is becoming enjoyable for both of us again. Nik’s still not eating but he is making great progress with chewing things he wouldn’t chew before —wash cloths, chewy tubes, Nuk brushes —I think because I am making a game out of it. He is trying so many new tastes and textures, still only licking, but without fighting. If I can encourage his enjoyment of many things, I have confidence that he will actually eat them one day.
Nik is now making so much more eye contact more consistently. He laughs appropriately (sometimes not) and is beginning to initiate contact and communication in his own way. Lately, it seems there has been a communication explosion. Nik takes my hands to guide them down to his tray when he wants to get out of his chair. To his lap belt when he wants out of the stroller. To the gate when he wants to go through.

Nik is beginning to communicate more with his voice. While the words aren’t there, he makes sounds that are the tonal equivalent of “No” or “Mo-om!” —you know, in that admonishing tone. Same thing for “up” and “out”, both sound similar but he uses them in the correct context quite often He will approach Niksdad and make a “raspberry” when he wants to play with him (the “fart” song I mentioned here). He will hum the tune of “Wheels on the Bus” when he scoots over to be brushed, “Row, Row, Row your boat” when it’s time to brush teeth. He gives kisses now with a smacking of his lips to the air before he tips his forehead to my lips.

Nik is wearing his glasses more; it’s still a battle sometimes but when he is engaged in an activity he forgets he has them on and will wear them for up to 40 minutes at a time. And speaking of being engaged…Nik will stay with an activity for anywhere from 20-40 minutes now (with prompting and interaction w/someone). It used to be less than one minute!
My once fragile and sickly little child has become strong, strong, strong. He goes on and on like the Energizer Bunny on steroids! The other day, he tipped over his Kimba seating system. The thing weighs roughly 50 pounds! Slow is not in his vocabulary; he’s got things to do and “lost time” to make up.

And did I mention how smart he is? Seriously. Nik isn’t terribly interested in playing with things “appropriately” but if you give him leeway to explore and examine something? He will figure out how it works in the blink of an eye. Sometimes he doesn’t seem to realize that he has all the information to put his skills to work and then…BAM! Just like climbing out of the crib. And he knows the deadbolt on the front door is the thing that keeps him from getting out. —for now anyway! I am already trying to think two steps ahead to solutions for the day —coming very soon— when he realizes he can open that door to a great big world.

I hope the world is ready for Nik.

Ready or not, here he comes!

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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
others.

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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Well, my parents were not able to babysit last night so we didn’t have our date night. Harrumph! We did manage to rent a movie and get some “down” time that wasn’t about studying, cleaning, doctor’s appointments or taking care of Nik. We got a commitment from my folks for this coming Friday night, though, so I think we can muddle through another week without forgetting each other’s name!
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Today has been a terribly stormy day with thunder and lightning and driving rain. Though, why on earth it’s called driving rain is utterly beyond me; you can’t see a darned thing to drive when it rains that hard! Our well laid plans —to take Nik to the park in the morning then the pool in the afternoon —fizzled out big time. We took Nik to XBos instead.

Overall, he did really well. He cruised and climbed and slid with both Mommy and Daddy a few times. He seemed to be really enjoying himself until Daddy took him up into the structure one last time to try a different slide. We still don’t know what it was —the noise, the lights, being tired, or maybe fear — that made Nik completely freak out midway through the trek. I was waiting on the ground level while Niksdad took Nik up through the structure. They were having a perfectly good time until somewhere near the top.

I could see Nik fighting against going up the platforms as they got closer to the “big” slide (which Nik loved when he went down with Daddy a little while before). Daddy would help him up and then Nik would climb right back down. This went on a few times and then Nik just went ballistic. He fell to the floor screaming, crying, kicking, hitting his head and biting his hand. To say it was awful would be an understatement; I know you all fully understand what I am describing.

Poor Niksdad made the mistake of trying to restrain Nik (he was in a relatively safe area and was not in danger of falling) and got a head-butt in the nose as Nik thrashed and reared into him. I felt helpless and frustrated. I could see what Niksdad was trying wasn’t working and I didn’t want to tell him so in such a public way. I simply told him to keep Nik safe and I was on my way up. I don’t think I’ve ever climbed and clambered so fast in my life.

When I got to Nik he was still frantically wild —very much out of control. I wrapped my arms around him and pulled him into my lap —receiving my own head-butt in the neck for my efforts. My objective wasn’t to restrain him but to stay with him (thinking very much of Kristina’s post about being Zen with Charlie) and to let him know he was OK. I just told him over and over that he was ok and that no one was going to make him do anything he didn’t want to do.

As I spoke very calmly to him, I began doing some joint compressions on his hands, arms and shoulders and gently pressing his hands together so he could (maybe?) get some calming input. I started to rock forward and back as I held him and hooked my arms under his knees, hugging them close to his chest. I felt his body begin to ease and the crying became more of a whimper. I scooped him up in my arms and asked Niksdad to go down first so I could hand Nik down to him as we went from level to level. At one point, I simply carried him until we got all the way down. By the time we got to the main floor, Nik was nearly recovered.

We took him into the toddler play area —with all the little Tumble Forms type stuff —Nik was back to normal in minutes. We decided it was time to go and headed back out in the rain. By the time we got on the road, Nik was singing and smiling as if nothing had happened.

I felt so awful for Niksdad. One, because Nik hit him so hard that he nearly broke his nose. Two, he didn’t know how to help when Nik really needed him. I don’t mean that in a judgmental way at all; rather, that we are still fumbling our way around and trying to figure out what works. Niksdad is still learning that restraint makes it worse. I think I get it more readily because I am the one that is usually with Nik at all of the “awful” appointments where he needs to be held down for something (like the g-tube stuff or EEG’s). Since I am not strong enough to hold Nik as he gets bigger, I have had to find alternatives.

The only reason I thought of trying the joint compression is because of Miss D, Nik’s new OT. I’ve watched what she’s done with him the two times we’ve seen her; it isn’t a magic cure at all, but it definitely helps Nik maintain focus and calm. I’ve been trying it at home over the weekend but haven’t been able to tell if it helps. I think I can safely say, after this morning, that it does.

Nik ended up having lunch and taking a nice nap while Niksdad got to study for his final exam tomorrow and I got out of the house for a short break. All is well and Nik is now sound asleep for the night. Let’s hope…

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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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