Welcome To My Planet

This Is How We Do It, Baby

2011-09-12T17:14:00.002-04:00

Whenever anyone asks me "Where do you go on vacation?" I reply "A small lake community in the mountains of Pennsylvania." I keep it vague for two reasons. One, because no one would recognize the formal name, the way they would "Disney" or "Outer Banks" or any rendition of "The Beach," and two, because it has been a "best kept secret." This place is held dear from generation to generation of those who spend a lifetime of summers there. It is a small, insular, loyal community. It is, in fact, more of a neighborhood than a transient tourist spot.

Quiet, simple, serene, natural, respectful, it is almost a throw back to the "Leave It To Beaver" times. With our lives being so hectic and crazy, this pace is necessary for our souls to recover if only for 14 glorious days of suspended animation in our endless mountains.

Because this vacation spot is unfamiliar to most everyone I know, the next question is usually "What do you do there?"

"Nothing" I sigh blissfully.

It is difficult to describe what people do on top of a mountain in a tiny town that has not a single grocery store, pizza parlour, arcade, movie theatre, shopping outlet, fast food chain, or good cell phone reception. In a place where the "downtown" boasts only a quaint ice cream shop, a used bookstore, a post office, a tiny shop for sundries and a small art gallery. Where the hot spot during the day is a three-mile, sand bottom lake without a boardwalk, but with sailing, canoeing and floating docks.

What do we do here? Actually, this vacation is less about doing and more about "being." One day during our first week here I was invited with a small group of women to do morning yoga on the floating boat dock. I ran a mile to the dock, did an hour of relaxing yoga, and ran a mile back to our house. As I stretched and posed in the sun, hearing the water lapping against the pier and the birds chirping, I realized that our vacation is very much like some yoga poses appear. Doing nothing and everything. Being present and mindful, while being truly relaxed in body and mind.

Yet unlike yoga or other meditative types of retreats, we are doing it together as a family. There is really no other time throughout the year that we spend such quality family time together.

We go to the lake during the day.

We go on hiking trails and discover mosses and hidden waterfalls, collecting prizes like acorns and rocks.

Contemplating a caterpillar munching on milkweed and watching dragon flies buzzing around the lily pads.

All three meals are eaten together at the table, starting with grace and ending with conversation. The T.V. stays off and the books and board games and cards come out.

A big treat is a scoop of ice cream down at Ye Ole Sweet Shop, a 1/2 mile walk away, or making s'mores over one of the outdoor fire pits. After the kids are down for the night, the grown ups drink wine, play Gin Rummy or read in front of the fire. The girls, my three littlest and their 11 year old cousin who comes with us, all pile in one room. At home in New Jersey they all have their own rooms but they love sleeping cuddled up together here.

We take one traditional "big outing" which involves driving an hour to an old, throw-back amusement park called Knoebels. It is inexpensive, nostalgic, easy to manage, and the big excitement of our two week trip.

The best part about this amusement park is seeing the girl's personalities come out. Pink went on literally 2 rides. She is our cautious mother-hen who wants her feet firmly planted on the ground. She rode the teacups with her sisters and cousins and I could hear her dithering "Okay, everyone, hold on tight to the wheel in the middle!" as she white-knuckled it with a brave face. Then there was Rella who at 3 has no concept of danger. The only thing stopping her from thrill seeking was the height requirement.

And five year old Tink? My little itty-bitty pixie who screams at a bug... breaks down a cries at the sight of a single microscopic drop of blood... needs therapy over any little tiny change... cries hysterically at the thought of going to college away from home? She's ironically our adrenalin junkie.

There she is, somewhere up there on the Italian Trapeze, as I stood below with my heart literally in my mouth having a panic attack. I was waiting for her to come flying down and crack her head like a coconut. I stood and smiled and waved and secretly wished the cotton candy stand sold Xanax.

So, what do we do on our vacation? We do together. We enjoy each other's company in a picturesque setting. We hike, we read, we take family walks, we explore. We wind down. We fuel up. We breathe. We simply be.

First Day

2011-09-08T09:11:00.000-04:00

This day seemed so far away. After years of having three small children at home all day under the ages of three... changing incessant diapers... unable to go anywhere from my own bathroom to the grocery store to the gyno without tiny people accompanying me... I am putting the third of my four children on the bus for school.

I am not ecstatically happy if you must know. In fact, there is a little emptiness in my heart where the wind blows through. I miss my little Tink on this, her first day of big girl school.

My heart... my laughter...my sidekick. My Tinkie-Girl.

Today starts the first day of school for Tink and the last day of endless time strung out before her, carefree, with zero responsibilities. For the rest of her life, starting now, she will either be going to school or working. For. Ev. Ver. It's over. She's officially entered "the mix," "the rat race."

Okay, it's just half-day Kindergarten, but I'm going for dramatic effect here.

My friend asked her "Are you going to Kindergarten in the morning or afternoon?" She replied "Neither. I'm PM." That's my concrete girl.

So, she got on the bus at noon and I tried to be brave for her. It helped that her B.F.F.L. Jolie was on the bus, squealing Tink's name and saving her a seat. Tink was so stoic as she sat in her seat that she neglected to look out the window and wave goodbye to her Mommy. Probably for the best. The stupid smile on my face wasn't masking the tears.

And with that, she was gone. Driven by a complete stranger (who was 30 minutes late I might add). I'm so proud of her. I'm so happy. But the sick, sadistic part of me misses when they all were little. Psychotic as I was when in the thick of Babypallooza. It's twisted, I know.

Pink entered SECOND grade. Of course she knew the drill so she was excited instead of nervous. I remember putting her on the Kindergarten bus like it was just yesterday. Of course, the day before yesterday, I held her 8 pound 6 ounce body in my arms. Funny how parenthood falls into that weird time-space continuum, time warp thing.

And guess who is back after three weeks away in Maryland? My Sweet Sixteen is back home and back to school too. As you can see, she's thrilled....

The sweetest part about the first day of school is not the excitement of sending them off.

It's the joy of having them return home.

2011-08-27T21:49:00.000-04:00

"The pessimist complains about the wind; the optimist expects it to change; the realist adjusts the sails." - William A. Ward

Vaycay

2011-08-24T21:33:00.001-04:00

Right now we are on our annual 2 week summer vacation at our favorite mountain top lake. That means we missed my first earthquake experience (and maybe the only of my lifetime) which randomly hit the east coast. They could feel it in New Jersey... And even further north. My neighbors had chandeliers swinging and I MISSED it! I will also miss the freak hurricane ripping through the mainland... I suppose I should be happy about being on a mountain of peace instead of dealing with power outages and scary winds. Hopefully another tree won't fall on our house.

So, I'm blogging while on vacay because I've promised myself and everyone else that I would write more regularly. I certainly can't let another 2 weeks go by in cyber-silence.

Unfortunately, only my iPad works up here, and despite my best attempts to figure out how to get photos on my blog from my camera or cell phone? It ain't happening. Oh well, you will just have to deal with my blabbering mouth instead and wait until I return for pictures.

Our first five days have proved restful and serene. I have done yoga in the morning on the boat dock with a bunch of wonderful women and gone for several 2 to 4 miles runs. We took our first family hike around the lake which is about 1.5 miles and even 3 year old little Rella did the whole hike without needing to be carried once. We eat ice cream cones with the kids in the evenings and after they go to bed exhausted from a day at the lake, the grown ups drink wine, devour novels, sit by a fire, or play cards.

I wish I could post some photos for you. It just feels empty without at least one.

More later... It is time for my chromo therapy bath in the jet tub with a Pinot in one hand and good book in another. Ciao!

tHERsDay: The Crying Room

2011-08-18T23:29:00.001-04:00

There is a place in the back of our church called The Crying Room - a tiny room in the rear of the nave, partitioned off and divided by a huge pane of glass. It is a room where parents can bring their crying babies, loud toddlers, or any one who may not be ready or able to sit through an hour church service without being disruptive. You can see and be seen. You can hear (through the sound miked in over the speakers) but not be heard.

There is a separate entrance to the crying room out in the hallway and when you are contained inside its walls, the fourth wall of glass is supposed to make you feel comfortable and included. To me, however, it feels like I'm in the Pope Mobile or I'm some expensive painting behind a wall of bullet proof glass. Yet I am acutely aware of the fact that I am neither as holy as his Imminence nor irreplaceable as the Mona Lisa.

Out of courtesy, I sit with CB back there along with the young moms and their tiny children as she is a bit too squealy, screamy, and physically agitatated to be out in the congregation without freaking everyone out. My husband sits out in the real world with our three other girls. I see the backs of their heads bent in prayer or whispering to one another when I know they're getting bored. I see life go on through a transparent dividing wall.

For me, the experience of being in the crying room is probably much different from the other moms who frequent this place, knowing that their time in here is limited and expected due to the developmental age of their children. They know that this is a "way station" and that one day they will graduate to the outside world. For me, this room is the literal expression of the gigantic metaphor of my life as a mother to a significantly disabled child - participating in life from behind the glass. Sitting in the proverbial fishbowl. Holy surreal.

It's stressful for me back in the crying room, though much less so than if I were sitting out there with the masses. I worry because there are families in there who I'm sure don't understand what CB's deal is. She's banging on the walls, incessantly kicking the chairs in front of her, jumping up and down in her seat, scratching the flesh off of my arm, profusely drooling and 9 times out of 10 will poop in her diaper and smell up the joint.

I try my best to pay close attention to the service because that is why I'm there - not just to be present in body but also in spirit. If I'm just there in body and my mind is elsewhere, then what's the point? I should have just stayed home. Yet I'm always anxious and tense and feeling raw and exposed, and when you are gritting your teeth together and feeling frustrated it's pretty hard to be all holy and stuff.

Last Sunday back in this crying room, the priest spoke and the congregation chanted in unison, and....

CB spoke.

She called out "Mommy!" as clear as I've ever heard CB say a word.

CB's language consists of babbling, sing-song, repetitive sounds and a few one-word verbal approximations that mostly involve food and her favorite "stim" items. I waited 8 years before I heard my first born child call me Mommy. Some people never hear it in their entire lifetime, so I was okay with the prolonged wait. It kept me in suspense. In the past 16 years, I can count on one hand the number of times CB has mumbled something that resembled "Mommy" and have cherished it dearly. Plus, I have three others who say enough "Moms" in one hour to make up for all the years I missed. The "typicality" of my other lovebugs can dull the nagging ache of not hearing it from CB, but voids like these can never truly be filled.

So here is CB on a typical Sunday morning suddenly moved by something (and I cannot fully connect the dots as to what), calling out without prompt or provocation a resounding "Mommy!" as clear as a church bell straight from the heavens. She followed it about half a minute later with a loud and equally clear "Daddy!"

The significance of where we were when this happened was not lost on me.

On the other side of the glass wall the music soared, the people chanted in unison, the priest carried on, no one missed a beat. While, inside the fishbowl, a frustrated mother and her misunderstood little girl were granted the small but sweet gift of a moment of grace.

20 Minutes A Day

2011-08-16T08:13:00.001-04:00

Reading with my children 20 minutes a day is much more lovely with a Starbucks Iced Chai Latte in hand at the bookstore.

Nothing And Everything To Say

2011-08-13T13:26:00.001-04:00

What can I say after such a long hiatus to anyone who may actually be still poking around my blog? There is really nothing to say, and everything to say.

When you've been away so long it's so hard to begin. Where to begin? With the superficial, I guess. Summer has been exquisite. It has been perfect. It kicked off with Tink's adorable little preschool graduation at an old historic theatre.

Then, we settled into July with long days at the pool, where Pink got her deep water band after barely being able to swim last summer. Tink and Rella went under water for the first time after Tink swore she'd never, ever, ever, EVER go underwater in her whole LIFE. They are all three little fishies.

There was the fourth of July parades and fireworks.

Pink turned seven and we celebrated by spending a weekend at Great Wolf Lodge.

Lawn sprinklers, family walks, grilling, cold beers, the circus, girls nights out, sleeping in... I *heart* summer so bleepin' much! Even with the Jersey heat and humidity - Jersey, you can't ruin it for me!

sleepovers with their cousin

our first circus which was very fun, but I felt really sad for the animals, so I may have to boycott

When our lawn sprinklers turn on, it's instant fun for the girls. They are usually naked.

Girls night out at a winery right down the street from my house... I know, how lucky can a girl be?

While I hear many comrades in the minefields of motherhood counting down the days until school, I actually am not looking forward to September and the change of pace it brings. Not because there aren't sibling spats, and other such chaos a slew of children can conjure. I just actually enjoy having the girls home during the summer, chaos and all. I am going to miss seeing them every day. There, I said it, I'm certifiably nuts. I miss my girls when they are at school and not one day this summer has gone by where I've thought "God, I can't wait until school starts." How pathetic, I know.

Well, let me put in a little caveat. If CB was home all summer without her extended year program? I would be feeling very differently. She was off yesterday and I was flat out DONE by noon after cleaning up pooh all over our family room floor and her. I love her to pieces, but that girl can really shred the thread of sanity that I hang on to. She's missing from most of these pictures as she spent much of her break from her summer program with her dad in Maryland. She doesn't do parades and water parks and fireworks well, so it ended up for the best. She does love the pool so every Friday, her day off, she enjoyed that. I hope that felt enough like summer to her.

I have to say that I have been in heaven and we still haven't gone on our 2 week vacation! With one exception. In July, my beloved grandmother died at 93. She was my mother's mother. Up until she died, I had all four grandparents living, so this was my first up close and personal experience with that type of loss. I am lucky to have made it into my 40s before facing the death of a someone very close to me. Not all of us are so fortunate. The void that is left when someone you can't ever remember not being in your life, someone who loved you and held you from the time you were born and lathered you with kindness and sweetness and joy, is tremendous. It is like losing a small piece of yourself, but I am confident that with time, I will come to know that she is not gone, but with us all. Woven into the fabric of who we are and can never be removed from our memories, our thoughts, our hopes, our heart. We just can't see her and talk to her anymore, and that part sucks big time.

The day we said goodbye to my grandma, was the day after my brother-in-law's first baby was born. She is the most precious little angelic thing.

It's so strange to have two very significant life events almost overlap like that, when you come face to face with birth and death, new and old, a soaring heart and a broken one. The way everything lives and dies, comes and goes, ebbs and flows. It's life, raw and uncut. There are only 2 certainties we really have with whatever life we live- it begins and it ends. All the stuff in between is largely out of our control and much less predictable, though we try our best to set the stage through our actions. Here's all I know: If I can spend more time celebrating than sobbing, being part of the solution instead of part of the problem, loving and being loved? Then I figure that's a pretty good life.

I promise to write more regularly. In all the stuff that happens in between a beginning and an end, I find there is also an ebb and flow of nothing and everything to say. I will make an effort to find everything to say in the face of the nothing - find it, make sense of it, give voice to it, free it. Because the stuff in between the bookends? That's the living. That's the story of our lives.

Sweet Sixteen

2011-06-01T09:26:00.003-04:00

We typically lay low on Memorial Day Weekend as both Dr. Fabulous and I are averse to traffic. And crowds. And spending money to sit in traffic and be tangled in crowds. So we hang locally. This year it was cook outs in the 'hood, parties with family, parties with friends, hanging at the pool and watching parades.

I love our town. I love the people we have met, the people we continue to meet, and everything about our new community. I'm so happy here.

Making wishes with pennies at my brother's graduation party, and believing they'll come true.

The girls loved the zipline at our friend's house. We had a fun afternoon and evening at their cookout - slip and slides, ziplines, baby ducklings, water balloon fights and plenty of ice cold beer and delicious food for the grown ups.

Every year Memorial Day weekend caps off with CB's birthday. This year was a little extra special. This year, was her Sweet Sixteen.

I don't know how I suddenly have a sixteen year old daughter, but I do. It doesn't seem like sixteen years ago that I sat in my townhouse on East West Street in Baltimore's hip Federal Hill area with a 3 day old floppy, sweet smelling little baby. Her father and I lived in a narrow, three story, rented row home - a living room/kitchen combo on the first floor (the kitchen consisting of a tiny wedge of counter, a bar sized sink, room for a tiny 2-seater table, no dishwasher, and a 4 foot tall fridge), the half spiral staircase against an artsy, exposed brick wall leading to the second floor which held the only bathroom in the house as well as CB's bedroom. The top floor was just one large room, the master bedroom, which didn't even have a closet. It did, however, have hard wood floors and a fantastic view of the Inner Harbor's skyline at night.

I was 26 years old, married for less than 3 months and a mother for less than 72 hours. I was alone on this first night home from the hospital. All I will say are the facts, without judgement: my first husband was out until 4 am at a Bachelor Party for a friend on the night our new baby came home. 'Nuff said? That small little anecdote sets the tone of the first several years of motherhood for me. Me and CB; alone, together.

Well, we are not alone any more! Sixteen years later I'll skip all the heartache and drama to say only this - Man, time really flies. Let me also add - Man, I'm getting old. Two huge cliche statements. You'd think an aspiring writer could come up with something more poetic than that, but sometimes the cliche says it all.

I can't believe my little girl, my first born, is Sweet 16. So much has changed. Even as I say those words I am struck by the oddity that while so much has changed for her, she personally has not changed very much. CB is CB.

Despite mellowing behaviorally over the years (um, thank GOD!) who she was and how she acted at 3 is still pretty much her schtick at 16. The one who has changed is me. I am the protagonist in her life story, and it feels totally narcissistic and self-serving to know this but it bleeds of too much truth. In being her mother, I have been transformed. In living through the different hardships that occurred during her childhood then post-divorce, I have been transformed. Entering a new phase of my life, more deliriously loving and happy than I could have ever imagined, I am transformed while she stays constant, like my north star.

Here's CB's birthday dinner. Never would I have expected to snap this photograph on the day my eyes first lay upon her face. Life is so funny that way.

Only CB would prefer eating goldfish crackers and peanuts to birthday cupcakes. Her sisters blew out her candles for her but I made them all make a wish for CB as they blew out the flames.

What Sweet 16 could be complete without someone having a big giant explosive diarrhea? And by "someone" I don't mean ME, though I was the lucky one who got to clean it up. It's never a party until Mom cleans up pooh. And gets stung by a wasp. Not necessarily in that order.

Somehow, somewhere, there is a wasp in our house. All I know is apparently Pink thought she saw a wasp this morning, told her dad as he took her to the bus stop, he neglects to mention it to me, who unsuspectingly rummages through my purse which pissed off said wasp and next thing I know, a random, black flying blur darted out of nowhere with pure vengenence and stung me right on the inside of my arm. I barely saw the thing and haven't seen it since. It has been hiding out for hours just waiting to strike again. So, I'm walking around my house, terrorized, in a full sweat suit with a hood up all day despite the 93 degree heat. To add insult to injury, I'm officially sick with what I suspect is strep throat, but I can't be sure. At some point, I will go to the doctor. In true "Alicia fashion," I will wait until I'm on death's door.

On that note, Happy Memorial Day to all ...

and Happy Sweet 16 to my CB. I won't have to worry about her borrowing the car keys, dating, or breaking curfew. Autism has its perks.

Weekend Wrap-Up, Mother's Day Style

2011-05-09T09:14:00.000-04:00

This weekend was glorious.

Mother's Day weekend began with CB's prom friday night. I will devote a post to that soon. But for now, here's a teaser of my beautiful, almost 16 year old, daughter.

Saturday I spent the day with my mother getting tea at the local tea house and then walking through the quaint downtown, meandering through the antique shops.

While I was spending my day childless, Dr. Fabulous was out buying Pink a new bike. This meant that Tink got Pink's old bike, complete with new training wheels and a new bell. They spent all day outside showing off after I returned home.

Okay, Rella got a bit left out. She'll survive.

So stoked to be rockin' some summer gear.

We also discovered about 200 tadpoles in an enormous puddle in the empty lot next to our house.

Of course, by Sunday the water was evaporating, threatening the lives of the tadpoles. With no rain in sight for about 5 days, don't you know Dr. Fabulous was filling that puddle with wheel barrels of water. How could he not? The girls had named all 200 of the infant froggies!
Mother's Day proper kicked off at our favorite restaraunt, Blue Plate, in our cute downtown followed by church then ending with a drive out to Auburn Road Vineyards (my new obsession). We spent the rest of the day meandering through the vineyards and hanging out. It was a fun surprise for Pink to see a few schoolmates there whos moms I also know, so the girls got to run around with friends while the grown ups got to chat while sipping Pinot Grigio on the flagstone porch under a beautiful pergola.

It was the kind of Mother's Day weekend you just can't buy in stores, always fits just right, and that you never want to return. That kind of perfect.

tHERsDay

2011-04-21T23:12:00.002-04:00

Thursday is HER day. For all the pictures where she is left out. I'm giving her a little press. Just because it's tHERsDay.

Last week I got a note home from CB's room mother with a great idea for Teacher Appreciation Week. She sent home a scrapbook page for the kids to draw some kind of "thank you" on. She also said she'd love to get the 2 teachers a nice gift and requested a $4.00 donation for any parent who would like to participate.

I sent in the money and scrapbook page. Apparently I, and one other mom, were the only parents who participated. The deadline for collection came and went, so CB's room mom said she would not be able to do a classroom gift for the teachers as planned due to the minimal participation.

You know, the whole thing should make me angry but the funny thing is? It makes me so sad I can't even muster the strength for anger.

Some of you may recall the beautiful Halloween party this same room mom put together for parents and students, and that I was the only parent who attended. A row of beautiful potted mums sat on the floor for the parents, unclaimed.

Now, I'm sure there will be parents who send in little gifts for the teachers. There will probably be some who won't. The bottom line is that these teachers are incredible. I cannot describe the difficult population they work with and how committed they are to these kids. It woulda been nice to show them some "group luv." And it woulda been nice to show our first room mother EVER (that I have seen in CB's 5 years at her school) a little support too. But that's just me. I get heartbroken over things like this. Mostly because of what it represents, and I don't like what it represents.

Weekend Wrap Up: Spring Is In The Air

2011-04-20T11:58:00.005-04:00

Spring is in the air, but the Jersey weather sure ain't matching. We'll have a day or two that is nice a warm. A tease, really. Then we're back to chillier, overcast days and/or wind and/or rain. The thing about Jersey weather? You go from a cold winter to a hot, humid summer without much more than a few nice spring days in between. It's a rip off, but hey... it makes you appreciate what you can get. At least, everything looks pretty.

'Tis the week for egg hunts and spring concerts and coloring eggs. We've had a very busy week with playdates, children's theatre, visits to family, doctors appointments, and IEP meetings.

Tinkie's Pre-School Spring Concert. This was after the "Rockin' Rabbit" number.

Last weekend was packed and this weekend will prove the same. But busy beats boredom. I can't stand boredom. It's quite ...boring.

Our windy easter egg hunt last Saturday was a hit.

I had to take all four girls alone. This was a bit intimidating, but I just chose my attitude and stuck with my choice. My attitude was "Everything will be great!" And it was. CB was okay, though not completely thrilled about being out. She hung in there, a bit whiny and tried to be uncooperative, but I held my ground. The hunt was short and sweet due to the impending rain which fell minutes after we got into the car. That was good though. Short and sweet is what you need when alone with 4 kids in a wide open field. We saw lots of friends there from Pink's school and Tink's new playgroups which was cute.

Rella was the only one not afraid to approach this stellar lookin' easter bunny. But, as you can tell, she is not thrilled. Or maybe, she wasn't fooled.

Palm Sunday was spent with the Dr. Fabulous side of the family. Since we rotate years spending Easter with his side and my side, it is nice to have Palm Sunday to get together on the "off years" when we don't go up on Easter.

My mother-in-law is an amazing cook. I mean, AMAZING. I always leave there ready to explode. Good thing we could run around outside to burn off some extra calories.

My Easter gift to myself? I finally broke down and bought a new point-and-shoot camera to replace the one I've hated and complained about for over a year. Panasonic Lumix baby. Can't wait. It should be arriving next week in the mail. So for now, enjoy these fuzzy photos I need to spend hours doctoring up on an editing site. Hopefully, the new one will be kick ass! I just wanted something decent for CB's upcoming PROM.

Dr. Fabulous told me that now that I have my new camera, I'll be off to obsess about something else I can't live without. It took a whole 24 hours before I realized he was right.

I hate my old, out of style, crooked glasses. I really need new ones.

The State of Things

2011-04-08T22:12:00.001-04:00

For any last straggling "fans" who check in with my blog... I know I am letting you down. I have not been writing as much for months now, I know. During the free time I can spend writing, I am actually working diligently on my book manuscript. Wow, it feels so weird to actually write those words. Anyway, I have over 130 pages written and an April deadline for completion. I'm trying not to think and talk about it too much and just be productive. When I think and talk about it too much? I think and talk myself out of writing it because I convince myself that a) it's bad, b) it's stupid, c) no one will buy it and d) those few who do will think its horrible and write scathing reviews of what an awful mother and writer I am on Amazon.com. So, you see where all this spirals down to. The land of self-deprecation and I'm in no mood for that place.

Anyway, not thinking... just writing writing writing.
Okay, enough of that dullsville... onto the real exciting stuff.

The state of things around here is slipping.

Too much time spent writing and shopping, being social and having fun. Not enough time spent on cleaning. Why? I'll tell you why. The fake answer I give my husband is because I'm too busy. And I am busy, that is no lie. But too busy? No. I could work it out if I really prioritized it. Truth is, cleaning is lame and boring and I do not enjoy it at all. I enjoy spending my days doing other things.
Enjoying time with the girls and their activities

and spending weekends with friends and family celebrating birthdays

We've all been enjoying the very slow start to spring. Jersey has been fighting Spring, but we're on the cusp of bloom. The tight buds are just starting to relax.

Some have even opened, but not many have transformed at our house on the cul de sac. In fact, the first flowers of the season, our daffodils, came up without any bloom. Yes, only I could grow 15 headless daffodils.  Go figure.

Oh, best for last. I'm all over the place here. So the other day, CB got a drink of water from the sink by herself , something we taught her to do a few years ago. She's still working on shutting off the faucet after she pours a cup of water, but I'm happy with any bit of independence she demonstrates. Anyway, she walked her cup to the table and was about to sit down. Suddenly she sprang up and went back to the sink. I started walking toward her, ready to guide her back into her chair for her snack, and then I saw her pick up a dishtowel laying by the sink, walk over to a spill of water on the floor, stoop down and put the towel on the puddle. She even did a little wiping motion. Then, she left it there and went back to the table. I stood there in shock.

She tried to clean up after her spill.

SHE TRIED TO CLEAN UP HER SPILL!

I was beside myself. Elated. This is coming from a girl who typically is totally clueless about the world around her. She'll knock something over and keep walking, she'll step right into a puddle in a daze and it won't phase her. We've been attempting to toilet train her for almost 12 years with minimal success. In fact, sometimes after sitting on the toilet? As she is standing there to get her diaper placed back on, she'll pee all over the floor. And me. Completely oblivious. She once walked out of the house with her pants down around her ankles as I was running down the driveway to collect the mail. She is constantly in La La Land. Words can not describe how completely disconnected she is from the space around her physically and emotionally. But one day, she noticed that she spilled and actually tried to clean it up. For a brief second... she "got it." I was stunned. I was happy. And with this small action, it planted a seed of hope.

Hope was the pulse of my world when she was first diagnosed with Autism and Severe Cognitive Impairments at age 2. Hope floated me, motivated me, and provided the life vest to cling to in the ever changing tides. However, hope lost its buoyancy at some point, maybe after ten years or so. Hope was replaced by the grounding forces of realism and stark acceptance. To a certain degree, I suppose that is natural, but I hadn't realized how just a little inkling of hope allows a crack of light into a world you didn't even know was in the shadows.

My hope has certainly altered. Life experience will do that.  I no longer hope for a miracle, but for an improved quality of life not just for me and my family but for CB herself. It feels good to have it back. It feels good to believe in her. To believe that there is even more in there than she is able to show.

With such a small gesture, with such an imperceptible shift, I feel hope's pulse again below the surface, and I can let myself feel lighter. I can hope for my daffodils to bloom. And if there is no bloom? I can let myself enjoy my bloomless daffodils.

My daffodils without their bloom still remind me that spring is here. Remind me how pretty and strong the green leaves can be. Reminding me that something is there, growing. Just waiting to seen - not for what it's lacking, or everything it should have been, but simply for everything it is.

Prom Is In The Air

2011-04-02T22:29:00.002-04:00

We're one month away from CB's prom. Last spring was our first year in attendance and it was the best night of my life with her. Like last year, stress-free, private shopping is provided at the school where mothers can help their daughters browse and try on a huge selection of gently used formal dresses (donated by staff, family and the community). If a dress is found, that student gets it for free and the parent only pays for any alterations and/or cleaning that may be necessary.

This afternoon is almost as fun as the prom itself. CB's teacher brought her down and helped me with something my daughter can not stand... trying on dress after dress. The irony of it all is she is breathtaking in each one, but a) doesn't even know it and b) could give a rat's petuty. Her teacher brought reinforcements with a class aide this year as last year CB ended up throwing the partitions across the room in her protest at our last dress shopping extravaganza. A girl trying on gowns should always have at least four sets of extra hands total, don't ya think? And once again this year, I have her trying on formal wear in black socks.

I loathe my camera. I mean, only photo of both of us together and it's blurry and horrible!

I've never taken my 15 year old daughter to the movies in my life. Or out on a shopping spree or to go get our nails done. I never watched her play a sport from the bleachers, or drove her to her first sleep over party. I won't teach her how to drive, help her find her wedding dress, or watch her walk down the aisle. I'll miss so many things in a "typical Mommy -Daughter" relationship, but I don't get to miss this. Prom dress shopping with my Almost Sweet-16, first born, little girl.

We were pale, petal pink last year. She was truly exquisite, but a lesson was learned at prom the year prior. She needs straps.

This year, I think we'll play up her eyes with a pale, periwinkle blue cocktail length dress.

Out of 3 photos in this dress, this was the least blurry. Man, I hate this camera.

But we'll leave the black socks and ponytail at home. And, if you can't tell by the quality of my photos lately, a new camera is in order. And I mean, bad. So bad that I lose sleep over it at night. So bad that when my amazing husband surprised me by bringing home a new printer/scanner/copier/faxer I was ungrateful enough to actually think "Crap, I wanted a new camera, not a stinkin' amazing printer!"

Only 4 weeks until prom... I think my camera will accidentally get flushed down the toilet tomorrow...

Weekend Wrap Up

2011-02-28T21:28:00.002-05:00

The girls went to a Chocolate Spa Birthday Party this Saturday. And when I say chocolate spa party, it was all out spa. The most stinkin' cute thing I've ever seen! Pink, the more introverted and reserved of the Pink-and-Tink duo, opted out of the chocolate facial, pedicure, hair and makeup and only did the manicure after tremendous coaxing. Of course, Tink was eating it all up, sitting there in her robe with her toes in the chocolate scented water, a masque on her face and cucumbers on her eyes giggling that "this is the LIFE." I'm afraid she takes too much after me.

I felt so bad that Pink couldn't get over her shyness enough that day to fully experience kiddie spa bliss. So, we did our own spa day on Sunday afternoon. Not as glam, but the great thing about kids? It doesn't take much to float their boat. As long as I'm giving them the rarity of my personal attention, they eat it up like an ice cream sundae.

Tink took a bath in her new bath salts while Pink manicured me.

Pink would much rather be on the "services rendered" end than "services received" end. I am of course the complete opposite... well, at least when it comes to beauty and relaxation.

We did each others hair and make up amidst scented candles while listening to her favorite Taylor Swift CD. It was an afternoon of delicious decadence and lightness of being. Nothing to do. Nowhere to be. Everything to appreciate.

Later we took a mini exploratory "hike" in the woods behind our home.

We own about 1.6 acres which abuts another 6 acres of protected woods complete with hills, valleys and a creek. It is amazing at what you can find in your own backyard when you venture out behind the invisible walls you create.

It was kinda neat to crunch in dead leaves, climb through twisted vines and old moss covered logs, like you were miles away. Then you look up and there is your home, a beacon, silhouetted with the glow of a setting sun. The mysteries of life and excitement of discoveries just 100 feet away from your manicured lawn.

It reminded me of the Acres of Diamonds parable recanted by Russell Conwell in the late 1800s to early 1900s. This is the story of a man who left his family to search the world over for wealth. He lusted after diamonds, but despite the fact that he committed his life to this search, he never found his diamonds or fortune. Instead, he reached the end of his days with nothing to show... no family, no friends... he was reduced to a lonely pauper and ended his own life. Meanwhile, the man who bought his farm years later was happy and content with his family, his home, his life. One day, this simple and grateful farmer found that his home resided on an abandoned diamond mine. The very thing the former owner spent his life fruitlessly looking for was right there under his nose all the while. Hmmmmm. Makes ya think.

This weekend was about relaxation, nurturing, leisure time, family, and simple discoveries.

We discovered that spring was on its way as we found buds poking through the soil.

Right under our noses, where there was nothing just days ago. Now the faint recognition that spring is around the corner. The faint recognition of beauty, hiding underneath what seemed to be barren ground. Tender, bright, and full of promise. It never ceases to amaze me that at any given moment, right underneath the surface of something that seems so common, so lacking, so banal, lies the potential for beauty.

It's The Simple Things

2011-02-25T22:28:00.004-05:00

Simple Bravery
Today, there was the potential of a Tornado Watch in New Jersey and I'm bizarrely petrified of tornadoes. You would think I lived in tornado alley the way I obsess about tornadoes. These 60-mile-an-hour winds this afternoon were really frazzling me, but I went out in it anyway, braving the fictitious tornadoes, real rain, thunder and lightning. Just letting it go. Living a little. After all, I had 3 items to return to Kohl's before the weekend and a major mommy social event to attend.

Simple Changes
I've showered three times this week (major upgrade) and have kept my nails painted since Saturday. These things are unarguably superficial, yet despite this fact these things do represent a small shift. Gradually, over the past several months, I have started making small changes in how I treat myself. For years, I have put myself at the bottom of the totem pole. Now I'm up, by maybe one carved crazy tiki-face. But I'll take it. It is both important and not important, but it feels good to feel good. With my littlest one now three, there is a light at the end of the tunnel, which makes me both happy and sad...

Simple Accomplishments

I was published in the Op/Ed section of the Philadelphia Inquirer this week. I had reworked one of my older blog posts about the snow into a commentary article which was picked up and ran in Thursday's paper. A small feat to an established writer, but to a newbie like me embarking on a new (hopeful) writing career, I was feeling very proud.

Simple Joys
I am now totally obsessed with chai tea which I have tasted a few times and always liked, but now that I scored a few "free" bags, I am addicted. Perhaps I can now kick the Diet Pepsi habit. Perhaps. Next week? Starting yoga again. Downward facing dog baby. Warrior pose. Watch out.

Taco Night. The only dinner all 6 of us will eat, happily. I love me some taco night.

I love my 6 year old's paintings. She's done a "61 cat" and a really cool castle. We're going to mat and frame them for the house.

Progress
One of the things I've wanted most over the past several years is to write a book and have it picked up by a publishing house. I can't say whether Part II will come to fruition, but about 100 pages have been written thus far and it feels good to not just say "I want to write a book" but be in the ACTIVE process of really, truly doing it. For REAL for real.

Not on this, obviously...

The joy it is bringing me cannot be contained. I just really hope it doesn't suck. That would be a total buzz kill.

Quote of the Week

"...success in life is not how well we execute Plan A; it's how smoothly we cope with Plan B."
-Sarah Ban Breathnach (from Simple Abundance)

Here's to Plan B. That's the place where I live, and I have grown to love it.

100,000 Homecomings

2011-02-24T08:32:00.001-05:00

CB is the child of divorce. It might not have affected her emotionally the same way it would had she been a neurotypical child. I don't know how the shuffling around from parent to parent impacted her. She never gave any indication of angst, confusion or unhappiness. For CB, her world is likely always unpredictable. She has constructed a tiny planet for herself that could fit on the head of a pin, unless or until someone else pulls her out of it. Even then, what she allows herself to be aware of appears rather limited. Again, these are things we'll never know as her internal world lies forever inaccessible.

For me, my divorce constructed a life consisting of a series of goodbyes to my daughter. Whereas we once lived under one roof, we each had to quickly grow accustomed to a life where a few times a month we drove down the interstate and said goodbye. Even after all of these years, I still shut the door to her room when she's gone to avoid seeing its emptiness. I can't bear to see the silence.

Saying goodbye to her has become rote, but not easy. Missing her presence in our family has become our norm but again, not easy. The respite is nice, looked forward to sometimes, but the relief it offers also comes with a weight on the heart.

So many goodbyes have been said over the past 10 years. One hundred thousand goodbyes over a lifetime, and counting. But within each goodbye lives the quiet joy and sweet relief of over 100,000 homecomings.

Maybe I'll Get Lucky And Be Eaten By A Tiger

2011-02-21T22:03:00.000-05:00

I love going out and getting a little crazy once in a while. This weekend was the perfect girls night out at the beach! We all packed our bags, drove to the beach, dressed to kill, and went out dancing. The only problem with these girls nights is that I can seriously no longer hang like I could 15-20 years ago. Yet, in the moment? I totally think I can. My husband says that THINK I like alcohol more than I really do. I don't know what exactly he meant by that. The loss of my last functioning brain cells made it too hard for me to think that one through. Right now, I am having a love-hate with alcohol and will abstain for at least a week.

I think it took me a good 48 hours to recover from my night in Atlantic City. We danced at a disco to the hottest music until 2 am. We went buck wild... well, for happily married moms of young children, buck wild. We didn't go to sleep until almost 3:00 am and not because we were nursing babies or soothing nightmares. It. Was. The. BEST.

Until the next morning. My friend L, who had to drive home to take her kids to the flipping circus, summarized the effects of our night of indulgence perfectly:

"Maybe I'll get lucky and be eaten by a tiger."

Her immortal words lingered with me on my 1 hour and 20 minute drive home that afternoon with a raging headache, blinding nausea, acute dehydration and severe sleep deprivation (otherwise known as a colossal hangover). I was praying for that same tiger to jump in my car and take me out of my misery.

But crazy as it seems, it was totally, totally worth it. Blowing off a little steam, laughing and letting go. I can't do it often, but every once it a while, it's nice to let the cork out before the pressure builds too much and just have good, clean, crazy fun with friends.

Weekend Wrap Up

2011-02-08T15:33:00.003-05:00

I think there was a Super Bowl this weekend. I didn't even know who was playing until 5 minutes before the game started. Dr. Fabulous read a book with the game on mute while the females of the household paid no attention. I am ashamed to say I seriously don't even know who won. If I ask Dr. Fab, I'm sure he'll know. Though obviously it wasn't important enough to him to give a shout out about the winning team post-game.

As you can see, we are not a football family. Or baseball, or hockey, or any sport really. You will not find a "man cave" in our home complete with sports memorabilia. Oh, wait, I remember. We do watch the World Cup in Soccer. Once every six years. It ironically always seems to fall on Pink's birthday party.
So, Sunday was not all about the football. I spent the day couponing, making meat sauce, reading, doing art projects with the kids....

...and recovering.

Recovering from what you didn't ask? From my exploits on Saturday. We went to see my brother and sister in law for a family party at their new home in Hershey, PA. The ride ended up being an extra hour due to traffic, so it was three hours total which wasn't a biggie at all. The reason I mention the length of the ride will become clear in a bit. I know, you're on pins and needles.

It was a great party. We were the only ones who brought sidekicks under the age of 6. They were very well behaved, thank goodness. Rella of course got her head stuck in the banister, because what kid doesn't try to shove their big ole noggin through wooden spindles at some point. But other than her brief humiliation, all was good. I even made a new friend!

We then hit Chocolate World.

Hershey Park itself was closed, but Chocolate World was doing business. Our first event was to take the free tour which involves getting on a little train ride and winding through a simulation of how chocolate is made at the factory. Upon getting off said ride, I threw my back out.

Obviously, this incident dampered the day. Some kind of stupid pinched nerve in my lower back that felt like I had a cattle prod electrifying me. But only when I bared any weight on my right leg, moved, sat, stood, laid down, or breathed. It hurt most when I laughed, which was most annoying because Dr Fabulous kept making me laugh the whole time; making fun of me as I hobbled through Chocolate World like a 104 year old woman. My hypothesis is that the long car ride messed things up. My lower back was feeling pretty achy by the end of the party up until that nerve got pinched exiting that fateful ride. It had felt like someone punched me right in the kidney. Which was, actually a picnic compared to the blinding, searing pain of a raw nerve ending being clamped deep in your spine.

At least I was surrounded by chocolate to dull the pain.

But somehow we only ended up buying the worlds largest Twizzlers instead. No sense, I know. My husband doesn't care for chocolate all that much. One of his only faults, but a MAJOR one in my book.

The ride home was brutal. Sitting with low back pain is the pits. Sleeping didn't work out so well either.

So Sunday I took it easy, thanks to Dr. Fabulous who lived up to his well-deserved nickname. I'm about 50% better today. No cattle prod, just general discomfort. Which is good because by Monday it was back to the daily grind: Grocery shopping, lifting children, wiping tushes, giving baths, cooking, cleaning, and laughing. Yes, the best thing about today was that laughing no longer hurts. Thank God, because life is way too funny to be deadpan all the time.

Weekend Wrap Up

2011-01-31T19:17:00.003-05:00

Jersey is still covered with snow. It's been too cold to melt the past barrages of storms. While this weekend many went outside to build snowmen, forts, igloos and go sledding, we only braved the cold to go up to Northern Jersey to visit family on Saturday. We have a wonderful tradition of celebrating everyone's birthday with a family dinner and cake.

They tend to get a bit backed up though, so we celebrated four birthdays; the January and February contingencies. It's always an all day event as it is a 2 hour drive. Plus, we don't see everyone that often, so it's nice to just block off the whole day while we can. Before the kids activities supercede all traveling. Before our busy lives get even more complicated. For now, we enjoy the time we have to spend.

This is our back yard at sunrise. You can see the colors of rainbow sherbert peeking through the lattice of trees, but trust me. This image does not do real life justice.

Sunday should have been productive. Or fun. Or snow-filled. I suppose the problem is that I do not care for Winter, cold and snow. I loathe cold weather sports and activities. I detest skiing, sledding, ice skating and if you want to see me super peeved, try getting me in a snowball fight. The girls, too young to entertain themselves without adult supervision and guidance outdoors, just haven't taken a liking to being out in the snow either. They get all dressed for it, but neither Dr. Fab nor myself venture out with them, so 28 seconds later they are back in feeling cold and bored.

I know I'm robbing them of a critical part of their youth. I see them turning into homebody couch potatoes before my eyes. Tink cries if we have to go out anywhere because she's "too tired and just wants to stay home." What have I created? Some of my friends have their 6 year olds in 3 activities at once. My 6 year old does Daisies. And... yeah, that's it. My 10 year old niece is in about 876 activities between girl scouts, swimming, singing lessons, church choir, church group, and the list goes on and on. That does not include socializing and homework. We. Do. Nothing. I should be bundled up, tobogganing down a hill all afternoon, laughing with glee, making snow angels and building forts. But they play so well together inside - finally! I'm starting to see the pay off of having 3 kids so close together. I'm banking on the rest of the years being worth the first 4 of utter mayhem and chaos! This gang can create whole make believe worlds of pretend and occupy themselves for hours. Sometimes. Eventually they start fighting. Most of the time,they drive me nuts and clamor for T.V. just like every red blooded American kid. At least they aren't trying to drag me outside. We're all happier where it's warm. Besides, no one owns snow pants or snow boots anyway.

So we were totally lame this weekend. It was a quiet Sunday. Reading. Writing. Researching.

I have a bunch of irons in the fire and not enough hours in the day. But that is okay. Slow and steady wins the race. Perhaps we're not most jet-setting, active, on the go, metropolitan people. But, we're living a good life. Sometimes it's just nice to appreciate the quiet and calm of not much to do.

Swallowed

2011-01-28T10:12:00.002-05:00

A clown twists colorful latex tubes into balloon animals, mesmerizing the group of children chaotically assembled around him awaiting a turn.

She waits. Wide eyed, patiently, a bit shy. She waits as I talk to friends and keep my eye on my 2 younger girls running amok on the playground. She waits as children who were waiting before her fill their outstretched arms with colorful poodles, swords, elephants, and silly hats. She waits as children who came long after her are also served. The clown seems to see every other child but her. The loud ones, the friendly ones, the adorable ones, the complaining ones. Not the one who sits and waits with the quiet, solemn trance of a monk. She waits empty handed, for 17 minutes, allowing the other kids to push ahead. Allowing them to be noticed first. I see her swallowed by the crowd.

I'm annoyed. A little at the clown, but more at what it all represents. What I see happening to the beautiful, quiet, compassionate souls of the world sometimes. That the more extroverted, boisterous, showy, or "obvious" one is, sometimes the more attention one receives. That often you have to make the world notice you. Maybe I was annoyed because I was watching an amazing little girl being unintentionally overlooked... once again... as if she were invisible. Maybe I was annoyed because the invisible girl waiting was my precious 6 year old daughter... and she is not my only invisible child.

My eldest, at almost 16, roams to earth and I see her footprints vanishing behind her as if her presence might never be known. As if all that will remain of her are the scars on the hearts of the few who had no choice but to love her. I can count those people on a single hand. There will be no legacy. There will be no voice. She exists in the moment, as she is, passing through a world that seldom sees her. And when they do, they often look away.

A friend of mine, a single mother of a teenage boy with severe autism, once described the phenomenon of feeling people simultaneously noticing her son while pretending they don't as he publicly tantrumed or acted loud and "different." Like she was both being scrutinized and avoided, stared at and ignored. Conspicuously inconspicuous. I could completely relate to her experience. Sometimes I feel like I'm living in a fish bowl. Everyone looking in as I move in muffled slow motion, separated by the thick glass that divides the "normal" world from the "less than normal world" I inhabit. Everyone witnessing the spectacle of my life at a moment that should be ordinary. Those outside the fishbowl, unable to enter for fear of drowning. Those in the fishbowl, trapped for fear of suffocating in this planet's air. Living in concert with those who pretend they don't see us but I feel their sideways stares. I feel the space where humanity and connectedness should be. Those who cross the forbidden gap lighten my heart and mind like the kiss of an angel.

Before I was inducted into the world of special needs, I too would avert my eyes when I saw someone in a wheelchair, or a child with Down Syndrome at the pool, or an adult with cognitive impairments acting differently at a restaurant. I felt that not looking was a GOOD thing. You don't want to be impolite. You don't want to stare. You want to act casual... nonchalant...as if everything is normal. Like their disability or their atypical behavior doesn't bother you. Certainly, looking either away from them or through them is better than 'staring.' But now I wonder... is it?

Is there a potential problem in averting your eyes, acting like everything is normal, pretending you're NOT watching a kid have a meltdown standing in a long line for pizza with a mother struggling to control him? I mean, it seems the "right" thing to do. Just act normal, and the parent and child will feel normal. Right? So, we ignore the girl screaming in the restaurant, or the mom struggling to get her adolescent boy out of a store, or the 2 year old, severely palsied child going by in a wheelchair.

But, if you see a typical child with a bloody nose, would you get the mom a tissue? If you saw a woman and her 3 young kids drop her grocery bags, would you help her pick them up? If you saw a kid lost in the Target, would you kneel down and help them find their mom, or walk by, eyes averted, trying to pretend it's not a big deal? If we saw a cute baby in a stroller, would we smile and strike up a conversation saying "Oh, he/she is soooo cute!" to the parent?

Because a child lost, bleeding, or a parent fumbling to pick their life up off the floor is a big deal. Isn't it? And what if the child is not acting out or tantruming, they are just there in the world. Sometimes it is nice to feel like someone notices you, is interacting with you, at a time when you feel conspicuous or vulnerable or tired. Just to feel your child is noticed for all they are. That they are seen... here... visible.

My 3 youngest and I walk up to the door of a convenience store. I have my double stroller, always a debacle at getting through doors. A girl in her late teens is exiting the store. She has no arms. Her hands come directly out of her shoulders and she is very short in stature. As I approach the building, she asks "Oh, can I get the door for you?" I see that the door is now shut and must be opened by pulling a handle, so I hesitate for a milisecond wondering how on earth a girl with no arms could get the door for me. Then I figure she wouldn't have offered if she couldn't execute. "Sure, thank you SO much" I say. My 4 year old says with all the discretion of a young child "How can she open the door Mom?" I say, without embarrassment in a loud voice and with jovial sarcasm "With her HANDS... just like you and me, silly!" Then I make eye contact with the girl and smile. The girl indeed opens the door with her hand that comes out of her shoulder. I notice the book she's holding in her other hand: one of The Twilight Series. I tell her I've read it and it's great and we exchange thoughts about the book. I thank her again.

My children noticed she didn't have arms. So did I. I don't think the point is that we have to pretend we don't notice. In pretending we don't notice, we ignore a chance to connect with those who are often visibly invisible. Those who everyone sees, yet pretend not to notice.

I watch my introverted 6 year old run across our front lawn to meet my 15 year old as she gets off the bus. She's almost 10 years her junior, but shepherds her toward the door like an older sister, chatting all the way. My two invisible daughters. One has a chance to find her voice and make her presence known. Her footprints leaving indelible marks. They're going to be big enough for two. When one cares for and carries another, they leave a trail as bright and fierce as the tail of a comet.

I see them walking across the lawn, straight into my arms. I see them.

tHERsDay

2011-01-27T13:48:00.000-05:00

Thursday is HER day. For all the times she is left out. For all the photos where she is missing. I'm giving her a little press. Just because it's tHERsDay....

Everyone Home On A Snow Day.

CB Entertains Herself Flipping Through A Magazine,

Tapping On Each Page As She Goes.

Stuck In The Middle With You

2011-01-26T11:28:00.001-05:00

The excitement this week? Tink turned five. FIVE.

I suppose I say this every time one of my children has a birthday but... it's going so fast. Next fall, she's off to Kindergarten. I'm already saddened by that, but she is so ready. As she says whenever we go to a new place or have a new adventure: "I'm ready for my close up!!"

Tink's favorite thing to do is look at herself in the mirror. She could gaze upon herself for hours as she poses and sings and makes faces. She fascinates herself. She is the cuddly one, folding herself up to the size of an envelope to sneak in your lap. Climbing between the warm sheets first thing in the morning to snuggle. Her chameleon eyes... you can't figure out what color they are. One moment brown, then the light hits and they turn deep emerald. Her big huge personality fits in a tiny waif-like form, prancing around on tip toes like a ballerina. Sharp as a tack, cute as a button, eager to learn, quick to imagine, happy to be, completely carefree.

Tink is the "middle child." Technically, I suppose. It's sort of hard to find the middle of 4, but since CB is about a decade older than the rest of the girls, and the three others were born right in a row... boom, boom, boom, that puts Tinkie smack in the middle. However, whatever "middle child syndrome" is, she does not have it. Just like "No one puts Baby in the corner" - "No one puts Tink in the middle."

She's infectious and sprightly. Draws attention where ever she goes. The boys in her preschool become infatuated with her, but she could seriously care less. She is confident, content, and has no need to impress or seek attention or approval. She knows her own mind. Always verbose, Tink was speaking in 10 word sentences at only 14 months old, so it never seemed like she was toddler. She went from infant to 5 year old and skipped everything in the middle. She is loving, highly existential, and deeply moved by theatre and music. Her favorite musical is Les Miserables and her dream is to be little Cozette singing "Castle on the Cloud" on stage. Too bad the girl can't carry a tune, but she sure can get into the theatrics of performing. She apparently is married to Pat Monahan from the band "train" but I think he is entirely unaware of this arrangement.

I love this girl. I mean LOVE her. There can't be a world without Tink in it. She was always destined to be. She was always destined for us, this family. Fitting right in, sandwiched between a quiet and differently-abled teen, a sensitive, empathic 6 year old, and a rambunctious, energetically wild 3 year old. Stuck in middle, there she is. My Tink.

Happy 5th birthday sweet girl. You will always be my rock star.

deliberateness

2011-01-13T21:14:00.001-05:00

With the new year came new promises:  A pact with myself to change a few old habits into better ones. Health, as always, is at the top of my list. Eating better, cleaner, less. Money management is another; making grocery lists and sticking to them, tracking my monthly budget better, and avoiding impulse buys. And of course, there are the (empty) promises to keep the house cleaner and more organized. These are not resolutions, mind you - don't do those. Just gentle suggestions to myself. Habits to break. New tricks for an old dog.

Changing behavior simply requires the replacement of one set of responses, or habits, with another set of responses.  Making something habitual, quite honestly, requires repetition. Especially with those things that don't come naturally. Repetition takes deliberateness. Keen, unwavering, kick-your-ass-into-gear deliberateness. Taking my "half-mindless" daily activities and making them more "fully conscious." When I catch myself, remind myself, bite my tongue, push myself to try a bit harder, then I am working on living with a bit more deliberateness. The hope is that one day, everything that feels deliberate will become reflexive.

What is most important to me, however, is not how well I do or don't manage my monthly budget, how much I exercise, or what number I see on the scale. What matters most to me is taking myself off "autopilot" and bringing myself fully present in the day. Present with my kids, with my choices, with the moments that I can not get back. As my husband says so often when appreciating a moment; "I'm taking a picture for my heart." I need to fill my heart's albulm.

So often, I let the gears of the day grind and roll me forward on this conveyor belt, and I sit, half-mindless, following where I am lead.  I sail in the direction the wind blows. Life acts, I respond. All the stupid little things that fill my day become more important than the things that actually are.   Are doing the dishes and sweeping the floor and returning emails more important than having a Michael Jackson dance party at 2:00pm in Pink's room? I think NOT! Dance party, baby!

With deliberateness, I can take myself off autopilot and I can consciously chose the responses I wish. I can anticipate, adjust, sail in whatever course I wish. Or, I can go in the direction the wind blows me and just take better care to notice the beautiful scenery, the light on the water, the smells in the air as I travel. Spontaneity is not lost in deliberateness. They can coexist. Spontaneity is both a wonderful side effect and deliriously sweet outcome of being totally "present" in life.

I can be more deliberate in what I say and how I say it. In reaching out to a friend or family member. In spending quality time with the girls. In giving daily thanks. Deliberateness creates habitual behaviors and habitual behaviors soon cease to be "behaviors" but simply become woven into who you are.

Next thing you know, deliberateness turns into effortless.  Next thing you know, you begin to live the most effortlessly fulfilled life you've ever imagined.

Or, at least, this is my theory. I'll keep ya posted.

the snow that never drifts

2011-01-09T14:51:00.004-05:00

The snow that never drifts

the transient, fragrant snow --

Emily Dickenson

It snowed again. A soft, quiet snow, that began right before rush hour and promised to continue for the entire morning accumulating to about 3 inches. Enough to be either pretty or aggravating, depending on your perspective. When I went on facebook I saw a range of reactions about the snow. Some openly cursing it, others enjoying watching it fall. It was the same snow to each of us, yet it rendered such a broad spectrum of reaction.

I personally enjoyed this particular snow fall. Mainly because I had no reason to go out in it, so we stayed in our pjs all morning. I sat in my office checking emails, sipping hot peppermint tea and writing for a while while the girls played pirates on the staircase. This is the view from my desk.

I fell into a zen-like trance watching the snow fall, blanketing the landscape with purity. One of nature's spectacular shows. How different I might have felt had I been outside, cold and wet, wiping off my car, slipping on the streets!

Perspective.

I think about my life caring for a child with Autism and other disabilities resulting from brain damage. I want so badly to always feel like her special needs are a gift. To see the beauty in it. The blessing in it. To pontificate for hours in written and spoken word about how she's taught us so much and we're all better people for it and I wouldn't change a thing. And truth is, I do feel that way some of the time. When I have time to breathe and reflect and just "be." But, like how the mood quickly changes when you go from watching the snow fall from your warm cozy home to shoveling out your car, the same holds true with Autism. You can philosophize all day about raising a child with special challenges, staring out at it through the window pane, but at some point you have to go out in it.

Coming to peace with CB's diagnoses and living the day to day trying to remember it - and live it - does not always come easy. At least not for me. The snow stops looking pretty once I am freezing my butt off and skidding off the roads just trying to get a simple gallon of milk. The day to day can get a little (okay sometimes a LOT) aggravating. So, it's tough because so often you have to go out in it. And unlike snow that melts, you're in it 24-7-12 for the entirety of your lifetime.

You have to walk into a room and find your daughter thrashing on the floor with a bloody eyelid and head contusion after falling out of bed mid-seizure. You have to go downstairs at 4 am to find she's emptied the fridge and chewed through 10 cheese stick packages and broken a dozen eggs. You have to leave parties early or skip them all together. You watch her push and hit your other young children and never once interact with them and worry they will grow up not loving their older sister, and you cry in the bathroom alone stressing about who might care for her when you are dead and gone?

You get pummelled by your daughter in the throes of a post-seizure psychosis at 2:00 am while protecting your three small children from this scene. You have to change diapers full of bowel movements for fifteen years with absolutely no end in sight. You have to remind and redirect her all day long to stop repetitively banging the floors, the windows, the walls, over and over and over again... the same reprimand, every five minutes for 15 1/2 solid years and it changes nothing because she still bangs and scratches your walls, bangs on the floor and the windows because she's in the grips of a compulsion like no other you've witnessed. But you know you're going to give yourself an aneurysm one day because deep inside it just drives you up the wall because quite simply: It. Never. Stops.

Your daughter breaks things at family members homes when they are kind enough to watch her. Some tell you it's okay. Some tell you otherwise. Either way, you cross the names off your ever dwindling child care list. You listen to a friend tell you "no one understands" what they are going through because of some "stubborn toddler" phase their perfectly neurotypical three year old is in (and will surely grow out of, and by the way your OWN 3 year old is in the same phase herself) but somehow NOBODY (which you assume includes you too) understands how hard they have it, and you just bite your tongue until you taste blood and tears, white knuckling the phone, not bearing to spit out that at least she should be grateful she wasn't up all night with a seizing child.

You keep a lot inside because the reality is, not too many people really know what YOU go through. Not that it really matters. It's just lonely as hell.

Over and over again, you go out in it. You dig yourself out, but it keeps on falling.

But every so often, you let yourself sit down and just be. Just appreciate. Just give thanks. Find the hope, the love, the blessings that keep you and your family going. Like the falling snow, we love it or hate it, but in the end, the meaning of it is ascribed by each one of us alone. The more beauty I find, the more grateful I feel, and the more sadness and anxiety recede.

Snow is cold. Snow can be dangerous. It can be confining. These things are true. It can also be fun, beautiful, peaceful, and draw us together as a family. The more times I can see the beauty, not the aggravation, in what fills my life the more I blanket my existence with the calm beauty of living. I can begin by taking the time to witness a single moment for all that it is, collecting moment after moment as they cascade down from the heavens in all their raw truth. They are as they are. Each unique as a snowflake. A prism of light. Beautiful. Simple. Mine.

Like the quiet dusting of snow, I can watch the moments float down like feathers. Each distinct from the next. Layering gently on top of each other, creating days, then years. Blanketing my landscape in a vision of brilliant white. Creating the picturesque scene of a lifetime.

Will I look out and see it as beautiful or aggravating? Everyday, I will fight to make the choice. And I think you know which one I fight for.

tHERsDay

2011-01-06T22:11:00.001-05:00

I was hoping with the new neurologist and additional meds

that the seizures would start abating.

We were clear for a few weeks, but Monday night at 4:00 am

we had another bout of that nasty "post-ictal psychosis."

Of all she and I have been through,

the aggressive psychosis following some of her seizures

is the toughest thing in the world to witness.

I can only imagine how scary it is for her.

The injury she inflicts on me in this state is not in her punches.

The wounds sustained are only in my heart.

It's times like these when I realize

there is nothing harder for a mother

than watching

helplessly

as her child

falls apart.