Tuesday, May 31, 2011

the day to day

Sometimes I feel that people are drawn to the dramatic aspects of having a child with special needs, but forget the much needed celebrations of day to day.

For example: the diagnosis. Attention is showered on the new baby, some overly positive to compensate for the fact that said congratulator has no clue really what to say, some negative and audaciously full of pity because, once again, no idea how to respond.

Each positive word, no matter how awkwardly worded, is appreciated like the balm that it is to the broken mother's heart.

Pictures are posted- comment after comment pours in about the cuteness of the "different" baby, in hopes of helping the parent still feel as though their baby is loved.

People are encouraging. Positive words are exchanged.

The special needs parent feels uplifted, chosen, thankful.

If the child has perhaps a leukemia scare or a surgery, such outpouring is once again evident. And again, balm-like in its therapeutic powers.

However, inevitably circumstances even out into the humdrum of the day to day.

Comments aren't as plentiful. Observers forget about the drama and return to their own lives, happy that they can turn off their computer and be transported back to the life of parenting normal children.

The day to day is where it can really get you.

Wondering what the function level of your child will be-feeling guilty if you choose another activity over extra therapy time and feeling that perhaps might be the difference between your child growing into a capable adult or dependent on the world for every slightest need.

The day to day leaves you full of tense wonderment for your child's future.

Yes, of course, you accept the diagnosis. That's all part of the drama.

But on those boring days where nothing exciting happens, that's when you're left to doubt your parenting job and drown in the many emotional traps of love versus fear.

You find yourself celebrating even the smallest show of cognitive activity-such as naughtiness. Surely that is your child's way of expressing and exploring the world with the same curious mind of any normal toddler.

Each naughty activity becomes an unbelievably exciting display of your child's genius as you silently encourage different acts of rebellion just so you can once again see them making a decisive choice on their very own, showcasing a true mastermind of intellect hidden behind the almond shaped eyes and distinctively carved chin.

Small shuffling that turns into long paths of furniture cruising leaves you feeling as though your baby will be set to run a full fledged marathon in a couple of months....and you find yourself beaming with ardent pride at the mere thought of your child's chubby leg engaging in the deliberate high step with brow earnestly knit in concentration as each and every muscle works overtime just to accomplish the simplest of motions.

If a small hand accidentally forms a sign that means "eat" that you have been rehearsing for months and months, you shower food down upon your unsuspecting child just in case they were actually asking for a snack, and rejoice in the possible progress regarding their sign language skills and then prepare yourself to eagerly wait weeks more to see the same sign repeated.

The day to day. The smallest of accomplishments. That's where the true drama lies.

And that's where the parent of the special needs child needs the most support, encouragement and love.

Things that are easy for your child to do...are incredibly difficult for mine. Each act of physical prowess or mental understanding that your child could do months ago, mine is just beginning to slowly explore

and I celebrate, post and brag about the slightest expression

of my daughter's true brilliance

hidden to the casual observer, but revealed to me, bit by bit

through the day to day,

occurring just as I'm about to give in to the fear.

I write this to thank you for celebrating with me and for your many kind comments for the day to day activities that I elaborate on in painful detail at times here on my blog.

Thank you. I appreciate it all more than you know.

Monday, May 30, 2011

home sweet home

 Wash machine whirring busily, unpacked bags sitting in haphazard piles around the house, baby contentedly settling into her familiar crib, sand still clinging in between toes, a family relaxed and reunited after quality time spent in the car- yep, all the signs are there that we had a fabulous weekend away at the beach and have returned, refreshed for normalcy once again (and yet, strangely enough, exhausted)

I wanted to take a million pictures to represent the long awaited vacation, but the weekend was full of small moments that happened so quickly, by the time one reached for the camera, they were gone.

Some favorite moments:

Addison playing nicely with her cousin Svana (Addison finding Svana's silky blond curls irresistible and sneaking in way too many pulls)

Quiet conversations with family and friends.

Amazing food.

Spending time out on the beach, both with a sweatshirt and with shorts and tank tops.

Games that reveal true colors (I guess my true color is not a pretty one...competitive much?)

Laughter.

Chubbs getting enough attention to put her way far over the edge into spoiled rotten. (she garnered ridiculous amounts of attention wherever we took her...and, of course, she thrived on it...)


Yep, all the ingredients were there for a perfect vacation. My only complaint was that Addison decided to throw away her habit of being a wonderful sleeper and decided to stay up super late and get up super early (didn't want to miss out on anything). As she was sleeping in the same room as us, the rule "play quietly until sleep time is over" wasn't as effective as it normally is, as her loud and exuberant "BA BA BA BA BA BA" at 5am was pretty difficult to continue sleeping through. (-:

Here are a few of the moments that I did manage to capture this weekend: (btw, my camera that I have used faithfully for the last eight years broke this weekend...sadness. enjoy its last few shots)

 Addison was all over the place therapy-wise this weekend. Pretty sure she decided to cruise the entire couch length several times. (and not just a shuffle walk...very deliberate high steps)


 "wait, where did my legs go?"

 Cousin kisses from the gracious Svana who thankfully decided not to hold the hair pulling against Addison.
 happy baby.
 trying to decide if the sand is worth another bite...
 apparently I'm the meanest mom in the world to make her wear a sun hat

 lounging on the beach makes Chubbs thirsty
 it's all about finding the perfect position
 yes, I make funny faces at my daughter so that she will make them back. guilty.
 While watching this pic being taken, my mother-in-law suggested that this should be our Christmas card picture...hmmm, she might rescind those words of wisdom after seeing how it actually turned out.
Merry Christmas?
 (fyi, during the car ride, we decided on little brother's name. so excited to finally have that settled.)
As I am camera shopping, I would love to know- what type of DSLR camera do you use and why? I am looking at a Cannon Rebel t2i. Anyone use this and like it? Hate it? and why?

Glad to be home, and desperately hoping for some normal sleep tonight. Aaron is outside tilling up our garden...I expect that I will be expected to go out shortly and help plant....hope my ever growing hinny will be able to be peeled off of this couch. (pretty sure little brother grew double in size this weekend. seriously. I now feel 40 weeks pregnant. 14 more weeks to go...I have a feeling this might be a big baby)

Thursday, May 26, 2011

Procrastination bites yet again

This weekend something very special is happening. This may not be a big deal to the average person, but to little ol' me -wife of a business owner who can NEVER take off work, mother of a high maintenance child who I couldn't travel while pregnant because of high risk and after she was born because she was hooked up to oxygen for 9 months....all we have traveled as a family in the last several years was to Boston for her surgeries, and Addison and I went once to Wisconsin for a work thing-to me, this is very exciting!!!

This weekend we are taking a VACATION! Going to a beach in Maine for a long weekend with Aaron's family and some friends.

As one who hasn't done a lot of traveling lately, this week I have been reminded with how much work goes into planning for a trip like this. There's the laundry washing, the clothes packing (planning out Addison's wardrobe takes hours), of course we must get the garden planted before we go, need to make the appropriate desserts for sharing, the car needs to be cleaned and oh by the way my car still has on studded snow tires.

Being the procrastinator that I am, I thought I could knock out most of those today, as I work MWF and Tuesday was busy relishing the moment. ha.

Addison and I were out early, hitting the road to get the shopping part of our list done:
Lowes to buy the seeds for the garden: Addison loves that store. So many men to smile and flirt with. (what can I say, this girl loves the men)
Kohls: Kohls cash was expiring...can't let that go to waste
Sears: Camera research
Michaels: organizing baskets
Ritz Camera: Camera research
Hannaford: ingredients for dessert
Pick up Sister-in-Law
Cashed in Mother's Day pedicure-completely necessary part of a beach trip

Not that you care, but just to give you an idea of what our morning was like. We were on fire, running in and out of each store like overworked madmen inspired by the promise of vacation.

We finally stumbled back into the house, toes glowing beautifully, stomachs growling pitifully and exhaustion setting in.

Within seconds of being settled in her crib, Addison was sound asleep. Time to get the laundry, planting, packing, baking part of my list done.

So tired.

I just sat down on the couch for a second.

Such a comfy couch.

That's the last thing that I remember until hours later when I was awakened by Addison's cry, I lifted my head off of the enticingly soft couch and realized that I have spent my entire hours-of-relief-while-the-overactive-toddler-is-knocked-out-cold by sleeping myself.

Nothing was washed, planted, packed or baked.

complete. failure.

Honestly, I don't even remember falling asleep. One second I was composing a list in my head of what to do first, and the next second I was picking my face up from a puddle of drool (I know, attractive, right?) and wishing for a neck adjustment because of my pretzel like sleeping position.

Anyone else have days where they just feel like an especially bad mom/wife? Well, that has been my week (read my last post if you need your memory refreshed)

As queen procrastinator, I promise myself every time that I won't let it happen this way again next time, but I end up waiting so long to give myself the message (ha) that the worst kind of procrastination happens...every time...

Sigh. My washing machine is currently working overtime, a loaf of delicious smelling blueberry bread is cooling on the counter and my baby is fed bathed and in bed. Perhaps it's not a lost mission after all (since it's raining and the planting will just have to wait)

Well, at least Addison had a good day.


"I'll take French tips, please...and does this remote come in any other flavors?"


Off to continue with recovery mode. It has been nice to whine about it first. (-: and oh yes,
YAY VACATION!

Tuesday, May 24, 2011

Warning: don't read if you have a weak stomach

I had a beautifully poetic blog post planned for today. How being Addison's mother has taught me to enjoy the moment-to stop and savor every life occurence instead of assuming it was merely a stepping stone to a bigger, more dramatic moment.

It was a beautiful blog post. I promise. I planned it out this morning while I was in the shower. (Confession, I do some of my best thinking while in the shower).

While I enjoy the luxury steam of our shower- Chubbs loves to play on the steps in front of the tub (separate from the shower), cruising along the bottom step and playing with her toys that I leave for her there. She loves shower play time.

Until today. When she decided to try something shockingly new.

I was busy thinking of synonyms for 'savor' and 'relish' when I happened to glance over at Miss Rocket Crawler. Within the 30 seconds that my eyes were off her, she crawled over to the toilet, pulled her self up (both of these things were not new, but she had never tried them during shower play time...she was sually too busy trying to get to my coffee cup from the top step)

and then I noticed her latest and greatest activity.

She had reached one grubby paw into the toilet, pulled out a urine soaked piece of toilet paper, and had began diligently gnawing and sucking-seeking optimum flavor.

Needless to say, the beautiful blog post flew out of my mind as I raced out of the shower (getting water, everywhere, btw), tore the soaked wad out of her mouth and hurried her over to the sink for a thorough mouth washing.

She was none too pleased to have her snack taken away and fussed and fought against the mouth rinsing.

Sigh. It was to date the most disgusting part of motherhood. (That coming from a g-tube mom who had way too many feedings go down way too fast and then come back up to plaster me in the face....this today was far, far worse)

Rookie mistake, leaving the toilet seat up, to be sure...but honestly I didn't think her short little arms were long enough to reach all the way into the toilet.

Addison 1.  Mommy 0.

The rest of the day was beautiful, balancing just the right amount of moment savoring and relishing. We grocery shopped, and after the tenth time of turning her back around in the cart and saying "no" quite sternly- she finally sat obediently, staring at me with wide eyes and making funny faces to get my attention.

We played outside. We napped. We walked. We shared afternoon snacks.

I savored and relished every moment and considered rewriting this morning's post all over again.

And then, dinner time struck.

Now, Aaron works quite late, so we hardly ever eat before 8:00. Addison eats at 5:00 and is in bed by 6:00. Therefore, she ends up eating a lot of babyfood and fresh fruit/crackers/cheese because if I prepare something just for her, she will refuse to eat it and I end up throwing it all away. (Note, if eating at the table as a family, she eats what we eat fine...but I can't justify keeping her up that late)

Tonight we are having spaghetti and meatballs, so I took some of the sauce and some of the noodles, cooked them at 4:45, slathered them in mozzarella cheese and knew that I had a success on my hands. Delicious dinner for Chubbs.

Turns out she was only interested in playing with and throwing the carefully prepared food:
She would give me this stubborn look after locating the noodles that I carefully hid back in her cheeks and dramatically spitting them out.

 Refusing to eat, but liberally throwing and playing in it. Sigh. She is seriously the most fickle eater ever, and no amount of forcing food down the throat seems to do anything for her.

Addison 2. Mommy 0.

It was a beautifully savored and relished day, bookended by moments of frustration and catastrophe.

I guess that's just part of motherhood.

Thankfully, tomorrow is always new...with fresh opportunities to put down the toilet seat in time and new chances to encourage Addison to eat grown up food.

(Panicked question to self: will it be double the trouble with little brother since Addison now has a built in look out for her trouble making????)

Monday, May 23, 2011

bedtime

My favorite time of the day is performing Addison's bedtime ritual.

First I feed her dinner. Some days this is much more frustrating than others, depending on how cooperate she's feeling and how lazy her jaw muscles are that day. (totally not kidding)

After dinner comes her bath where she loves to splash, make crazy faces at me, and double over in attempts to drink as much soapy water as she can get away with.

Bath time is invariably proceeded by play/wrestle time on Mommy and Daddy's bed. Addison climbs up/over Mommy, stands, gets thrown around and engages in almost constant laughter and tickling. We have our own private form of communication during play time made entirely of smiles, laughter, and the "bass mouth" face back at each other.

Playtime naturally leads into story time, in which Addison wants to be the one turning pages and sits very attentively as she soaks in every word.

While Mommy gets her final bottle of the day ready, Addison plays with the baby in the mirror, carrying on an extremely serious conversation made up entire of "ba ba", hand gestures, and mirror kisses.

Putting Addison snuggly in her crib, handing her her bottle which she grabs onto (with her hands and feet), I kind of want to just crawl up next to her in her crib; she looks so cuddleable.

After finishing her bottle and cruising around in her bed, jostling the blinds, throwing her radio on the floor, flipping her empty bottle under the crib and continuing her "ba ba" conversation through the window, she finally falls into an exhausted sleep, landing in an awkward position which suggests that perhaps she just collapsed mid-play.

Favorite time of the day. Hands down.

Somedays I say a prayer of thanks when she's finally in her bed and asleep so that my sanity can slowly return, but most days, I really miss her while she's sleeping (or cruising around, jabbering)

I treasure every minute that I have the privilege of caring for my little girl.

But sometimes it really breaks my heart when I think of all of the children who don't have a Mommy for a dinner, bath, play, bottle routine.

What about the kids who don't get tucked in at night and then checked on and re-kissed twenty times before sleep actually happens?

I can barely stand to think of the kids who are refused the luxury of a loving bedtime ritual solely because they were created with an extra chromosome, and therefore not wanted.

My friend Patti, over at A Perfect Lily, is doing a giveaway to help one such orphan.

She has done so much to help many orphans already, and her influential help continues with her latest focus, sweet, dear Albina. Please check out her post and help if you can.

Hopefully through the help of Patti's fundraiser, Albina can soon have loving parents who will give her a bedtime ritual, love, and someone to treat her like the amazing person that she was created to be instead of simply a number in a crib.

I have a beautiful baby to go give yet one more kiss to as she sleeps contentedly, dreaming of all of the trouble that she plans to engage in tomorrow. I smile in love as I check in on her, but my heart is also heavy.

 For Albina. And so many others just like her.

 If only words equalled money, I would be able to help them all. Please check out Patti's post.

Sunday, May 22, 2011

writer woes

Being 25 weeks pregnant, chasing around a 1 year old, actively trying to get a book published, finishing up my final school year as a teacher, getting stressed about narrowing down to one income, and struggling with some back/hip issues that have been seriously limiting me.- I am just about done in.

To be honest, these past few weeks, this is all I have really felt like doing:
But there isn't time to sit around and have a pity party. When I'm not teaching, I'm taking care of my house and baby or writing.

I'm overwhelmed by trying to accomplish everything and I feel a little bit like the world is staring at me, expecting and waiting for me to fail.

I know I'm a bit crazy to attempt to break into the publishing world as a first time author. I recognize my insanity here.

But my book has an amazing message that needs to be read by more than just me and a few faithful friends.

I believe in my book, and I appreciate more than I can say those few who have given me words of encouragement.

Because honestly? Having the world wait for you to fail is a very discouraging place to be. Especially to this slightly hormonal, exhausted woman.

Has anyone every attempted the impossible and succeeded? Does insanity ever pay off?

I read somewhere the other day that when you're trying to get a book published, you don't need everyone to believe in you- just one person in the right place who is willing to stick their neck out for you.

I have an amazing opportunity in a few weeks to meet with a woman who used to own a publishing company. She owes my boss a favor, and sounds willing to "point me in the right direction". She knows all the right people, and can get me where I need to be.

So the fact that I'm stressing right now to get my book perfect before that meeting shouldn't be surprising. Sometimes it just feels like aiming high and attempting the impossible will be the death of me.

Please pray that this meeting gives me the answers and direction that I so desperately need.

Getting a book published is stressful and fills me with constant doubt about my writing abilities. But when you're fighting for the world to accept your daughter just the way she is, and you spent the last year of your life crafting a fiction book that would positively influence the world's view on having a special needs child while still being an enjoyable, suspenseful read...

...and you feel some unseen force pushing you to continue and finish just when you're wanting to quit the most...

somehow, all of the stress seems worth it...but the journey getting there sure isn't a beautifully paved road.

it's a gravel pit that sucks you in and then mysteriously turns into quick sand...




Saturday, May 21, 2011

naughty chubbs

Question: Does having an extra chromosome take away the naughty gene and cause the person in question to be a picture of angelic happiness all the live long day?

Since a picture is worth a thousand words, here are 8,000 words to answer that question (with a few carefully contributed comments from yours truly)

nope.
to be fair, she comes by her messy gene honestly...but does she have to be sooo happy about it?

nope.
(this one requires a three picture progression...she is a master of finding anything sweet,  going to great therapy heights to obtain it...and then eating the delectable goodness that we in our meanness keep from her...once she even ate a candy bar through the wrapper...yes it is possible)

nope.
(she holds great fascination with attempting to get her head inside the toilet...)
nope.
(curiosity leads to a possible case of strangulation...she seems determined to grow up too fast)

nope.
(she really has it out for my coupon basket. Haven't had an organized coupon collection since before she discovered the delicious taste of paper and learned the skills to get to it.)

big nope here.
This is the raspberry syrup that my mother-in-law so graciously found for me, and Addison's little sugar radar has her convinced that the syrup is for her...(the concept, share with your little brother is totally lost on her at this point. lol.)

and that's just a small sampling of the pictures I could post...

I have a beautiful daughter with an extra chromosome...who has a very mischievous, naughty personality...which she got from her father

Does this remind anyone else of the phrase "More alike than different?" (-:

Thursday, May 19, 2011

random...with pics

This week I have had ample opportunity to work on my book. Lots of uninterrupted writing time while Addison hangs out with her PCA (she's in PCA transition time since her usual one is about to have a baby, so Addison is breaking in a new one on the "off" days). I am so incredibly thankful for the time because I realize it will be virtually nonexistent come September, and I would really like to get all of my basic writing/editing done before then.

All that to say-the book is making great editing progress this week, but my writer's mind is pretty much wrung dry for today...so instead of sharing words- I'm sharing some pictures that were floating around my computer, but never had a chance to post until now:

Hanging out at Gwampa and Grandma's House (and looking pretty pleased to be there)

Striking a pose
Happy baby.
just a little bit obsessed with that cute baby in the mirror...
Full of hysterical faces (she has found that it earns her attention, so she makes lots of funny faces)
photo courtesy of her new PCA, Carrie
This is her standard funny face of choice... (after which she cracks up laughing)
photo courtesy of her new PCA, Carrie
and playing with the paper is only so much fun before you realize that you've been recycled...
In conclusion, I just have to say that I bawled my eyes out watching this week's Glee episode-anyone else find it as endearingly sad as I did? (I just kept picturing Addison as the sister who died, and I could not stop crying)...and yes, I started watching Glee because I am a high school music teacher and it is pretty much the only language that some of my students speak, so I had to do my research. (-:

In between writing sessions, I'm reading Story of Beautiful Girl by Rachel Simon. So far it has been incredibly difficult to read and yet I've been absolutely captivated by the way she portrays the "slow" girl and what she's really thinking even though those watching her have no idea what's really going on inside her head. Absolutely fascinating and well written (what I've read so far) Has anyone else read this?

I'll save you from any more scattered thoughts and sign off before I start confessing embarrassing tidbits (need.more.sleep)

Hope you all have a wonderful Friday! I will be writing, writing, writing (after a much needed chiropractor appointment). BTW, I do hope soon to share some of my book with you-this is not just a tease. I have a big publishing meeting coming up in a few weeks, and I might test some material out on you before then, if it's OK with you...

Tuesday, May 17, 2011

the judgment has started

I realize that on a good day, Addison could easily pass as a chubby 6 month old-or a small sized 8 month old, and at first glance one might assume that she is much younger than she actually is...

...furthermore I realize that my baby bump has grown from the awkward is-she-just-putting-on-a-little-weight? stage to definitely-there-is-a-baby-growing-in-there stage....

sooo people are starting to notice...and make comments...

Yes, my babies will be eighteen months apart. No, I don't feel that I have to justify to the world why we are having our children so close in age.

Last weekend I was at a work function and another music teacher (not from my school) was asking me if I was moving out of state since he had noticed my job being posted as open.

I replied that no, we were actually having another baby and I was going to take some time off teaching to stay home with my kids.

He leaned in real close and said with a conspiratorial whisper "You understand what causes pregnancy, right?"

I gave him my best teacher death glare and he backed away with nervous laughter, not saying another word.

Seriously? How is that an appropriate question to ask a colleague?

I was at the hospital yesterday with Addison getting her bloodwork checked (everything is wonderfully normal-yay!), and just in the hour or so we were wandering about, I got so many comments...

"Oh wow, you're having another one?"
"You're going to have your hands full."
"You're already pregnant again? Is that baby yours?"
"Good luck with that." (said in a snide, judgmental voice)

and as I am barely 24 weeks pregnant and the belly growing is far from over, I dread the comments that I'm still to hear.

Why do people feel the need to immediately judge when they see a pregnant mom with another small baby? They don't know any of the background or history or the fact that a sibling close in age will be the very best thing for Addison's competitive driven development. (and even if it wasn't a planned thing...why is it their business to comment or judge?)

If this little boy is healthy and a good eater, I give him a year before he's caught up to Addison in size. Perhaps for a while they will resemble twins. (-: People don't judge a mom with twins, so maybe I just have a year or so left of the judgemental looks, and then the world will understand my family at first glance once again.

Oh well, I don't care. I just know that these comments are going to get very, very old...

I need to come up with witty responses so that one person will ask-be horrified-and then spread the word...no one will mess with us.

Q:"Oh wow, you're having another one?"
A: No, actually we're having triplets. Guess we didn't read the fine print on those fertility drugs...

Q:"You're going to have your hands full."
A:"Oh you have no idea, this is actually my twelfth child in twelve years. An even dozen was our goal."

Q:"You're already pregnant again? Is that baby yours?"
A: No, actually, I have a rare bloating condition that causes my stomach to weirdly inflate when I have too much salt. We tried that new Chinese restaraunt last night(shake head sadly)-their billboard that proclaims their food low in sodium is a complete lie.

Q:"Good luck with that." (said in a snide, judgmental voice)
A: With what? Losing the rest of this baby weight? Are you calling me fat?!? (hysterically lunge towards them while muffling a loud sob/scream)

Hmmm...promising start...I need to hone these answers a bit more.  Let me know if you have a witty response suggestion...I still have 16 weeks worth of comments left to hear.

Sunday, May 15, 2011

Pregnancy Cravings- Myth or Reality?

I don't believe in weird pregnancy cravings. .

This is my second pregnancy, and my entire life I have scoffed with ridicule at the stereotypical pregnant woman who wanted pickles and ice cream. Because really? That's ridiculous.

My last pregnancy, I remember one night at 10pm asking very sweetly making my husband go to the grocery store for black olives because I wanted tacos RIGHT THEN and they MUST have black olives.

But not really a craving. Just good, common sense. Tacos should have black olives. Fact of life.

This pregnancy, at least once a day I have had a bowl of Cheerios or Life with whole milk and fresh strawberries. But still not a craving. When I was so sick, it was the only thing that stayed down, and it just grew to be a comfort food. Instead of dessert-I prefer a nice big bowl of cereal with those sliced up strawberries. Ahhhhh. So good.

A couple weeks back I passed a pastry sale at Shaws. A dozen deliciously perfect plain glazed donuts for $2.99. Such a great deal-and they looked delectable beyond all reasoning with myself. So I bought the dozen and guiltily ate way too many of them.

Side Note: The reassuring fact that you can eat whatever you want when you're pregnant and you will easily lose it all through nursing is a LIE fed to newly first time pregnant people from bitter-still-wearing-maternity clothes-with-teenagers moms who wants everyone to suffer from the falsehood as much as they have. It's a LIE. (learned it the hard way, yup.)

So the donuts from Shaws-totally not a craving. Just a good sale...that resulted in some bad eating choices. (the fact that I saw them on Wednesday, did not buy them and thought about nothing else until Friday when I had a chance to go back...means nothing towards proving the existence of cravings. I just hate to pass up such a good sale)

Still laughing at the "craving" idea. Who has those? Not me. I assure myself daily.

Until today. Well, yesterday actually. Yesterday I was eating lunch at Applebees with a very good friend. I decided to try a new beverage- raspberry lemonade.

Oh sweet nectar of the gods.

Raspberry lemonade. It was tangy. It was sweet. It slid down my throat in the most glorious fashion, setting on fire every last taste bud. The ice cold beverage landed smoothly in my stomach, indulging in a satisfied happy dance which immediately demanded the need for more. raspberry. lemonade.

Thank goodness for free refills.

And carry out cups.

The only problem was, today (24 hours after my last sip of raspberry lemonade) I was driving home from a performance and that's all I could think about. I struggled to keep my car on the road while my throat was crying out for more of the tangy sweet beverage I had introduced to it yesterday. In intricate detail I imagined that I was holding a delightfully chilled cup of the desired beverage, carefully sipping the goodness, feeling that same happy dance in my stomach celebrating the best thing since Dove chocolate pieces. Ahh yes, that's the stuff. The dream was so real I got all kinds of cranky when I brought my hand holding the cup up to my mouth for another sip and discovered that it was startlingly empty.

I know now how vampires must feel.

Sooo, I did what any cheap pregnant woman would do. I stopped at the grocery store to pick me up some lemonade and raspberry syrup to make my own raspberry lemonade (can't go running across town every time I get thirsty...and don't even suggest a mix....gag me now.)

The only problem was, the store did not carry any syrup (you know, the kind you put in coffee, teas or LEMONADE) How is that even a legit grocery store??? Just a waste of space. I have lost all respect for Hannaford...

...and Price Chopper...TWO stores who had the very nerve to stand between me and my raspberry lemonade. As I raced through the aisles hoping to find it in an unexpected location (perhaps it was in the freezer aisle now???) I was faced with the bitter truth.

I was not going to get any raspberry lemonade.

I felt my throat begin to close up. Life was no longer worth living.

I drove home in defeat.

Now I sit, drinking regular yellow lemonade and my taste buds are not on fire. My stomach is not doing a happy dance. It's actually making me a little sick. Little baby boy does NOT approve of this substitute.

Sweet nectar of the gods has been replaced by muddy water mixed with a little tar flavoring.

Hubby left to go to church an hour ago. He mentioned off hand that he might stop at Shaws to see if they carried the desired raspberry syrup. (What do you know, he does listen when I talk)

Someone mysterious person stated pretty strongly that he would not be let back in the house if he dared come home without it.

Pretty sure that didn't come out of my mouth. Addison's first sentence. So sweet.

I give in. I admit it. Pregnancy cravings are real. (and so is raspberry syrup-fyi to grocery stores who have now made my list)

Wednesday, May 11, 2011

heart day

It's one thing to be sick or physically hurting yourself. When I was nine, I broke my back, requiring a backbrace, therapy-you name it. That event set off a long struggle of back issues. I am certainly no stranger to pain. From very young, I have never been able to swallow pills-tic tacs-m&ms (it was an absolute crime to have to practicing swallowing on m&ms...such a waste). As a result, I became a big fan of simply toughing it out which extended into my childbirth experience where I chose to go without an epidural (this was while being induced...for 31 hours). When I am sick or hurting, I simply keep going because that's all I know.

It's an entirely different matter when your spouse is sick. Aaron is perhaps the worst sick person that I know. He is a go-go-go type of person, so when his body crashes, the whole world around us shakes from the fall of the workaholic giant. He insists that he's fine, but he's not. He won't let me feed him or baby him-because oh by the way he's fine. "Doctors are for the weak" and I'm pretty sure Aaron hasn't been to a doctor since he dislocated his shoulder skiing a couple winters ago (after which I practically had to dislocate his other shoulder just to get him to slow down and take care of himself).

But no matter how tough it is working through a physical ailment of your own-or reminding yourself that marriage is forever when trying to reason with a sick spouse-all of that drama absolutely pales in comparison when it comes to your child being hurt, or sick, or even uncomfortable in the slightest.

I'm convinced that part of the reason child birth is so painful is because your heart is using the opportunity to grow an extra chamber-to feel emotions that you've never felt before as you strive to take the very best care possible of this tiny infant intrusted to you. This new chamber of your heart houses concern, love, fear, an incredible imagination that always pictures worse case scenario, a fierce protective nature willing to do whatever it takes to ensure the safety of your child.

And yes, Addison is sick right now. She is miserable and I wish I could take away her pain and get my happy toddler back, but that's not even what I'm primarily talking about right now.

One year ago today, I handed my tiny daughter to an anesthesiologist who in turn handed her to a heart surgeon who was attempting to close a very large hole in my baby's heart. It's ironic because if this was any normal child's heart, they would have let the holes close slowly over time (they only did one with this first surgery)-letting it take years if necessary. But because of her high pulmonary hypertension, they knew they needed to close the hole to ease some of the pressures that were at sky high levels inside her very little chest. They went in from her back-from behind her left arm knowing that they had to do the surgery as quickly as possible to minimize the risk of death on the operating table (high pressures aren't something you want to mess with).

There is absolutely nothing that compares to the feeling of having your baby in surgery. Knowing that the life of your child is in the hands of medical professionals-there's nothing you can do to assure yourself a positive outcome or even tip the scale in your favor. Even just the fear of being put under and all of the risks associated with it are nothing compared to the thought that the very organ that pumps life into your baby's body is being handled with the hope of making it better but the risk of losing it all is so real you can taste it.

Imagining the open and exposed body of the small body that you have nurtured and loved, at the mercy of the surgical team-praying and hoping that this won't just another number to them that might end as one of the failures where the patient leaves the OR lying completely under a sheet.

That new chamber of your own heart that was grown just to feel all of the new emotions that accompany motherhood is filled with so much pain that it makes you want to rip your own heart and give it to your child whose body struggles to function on her own.  When those blue eyes bright with pain slowly blink open in the Cardiac Intensive Unit-the frustration from being unable to take your child's hurt away-the fact that you can't even hold or move her due to all of the tubes and wires connected to make sure that a machine breathes for her even when she can't on her own-the knowledge and fear that it isn't over, that these next hours are so critical whether she lives or dies-the relief that you are able to see your child alive again, that motherhood is not over for you, that hopefully this means that your daughter can finally come off of 24 hours of oxygen a day-all of these emotions combine to create more pain for yourself than you ever thought physically possible.

There is truly nothing like having a child in surgery-the fear, the hoping, the desperate prayers.

But in all reality, it's one of the best experiences for a parent, any parent. Because each of us recognizes somewhere in our knowledge base that we can't control whether our child lives or dies. We do the best we can, but the ultimate care and safety of our child is not up to us.

Trust. Trust in an almighty God who created the life of our child to sustain that little life as he sees fit. Trust that the outcome of whatever the circumstances that there is a bigger plan set into motion by someone much bigger than ourselves.

Every parent should know this, but the ones who hand over their child's life to a surgeon-that parent is forced to face the bitter reality. Their child's life is not their own. That parent is put under fire to see if the trust is really truly there. The Lord has a plan for each of our kids, and sometimes the hardest thing to do is to stop doing and simply trust.

That is what surgery taught me. One year ago today. That is what I remember each time I look at the scar on my baby's back. The memories flash through my mind every time the doctors now listens to her heart and says they can't even hear her murmur anymore. The thankfulness that floods my heart every time I remember the oxygen battle and how that surgery got us closer to being done with it.

I am thankful-for the brilliant surgeon and medical team at Boston Children's Hospital, but more importantly, I'm thankful to the Lord for choosing to bring my little Chubbs through her heart surgery successfully. Because he is good. All the time. Even when your baby needs heart surgery.

Happy heart day, sweet Addison.

Tuesday, May 10, 2011

sick baby

So poor little Chubbs...last night when I hastily hit publish on the post because I heard retching noises coming from my little girl's crib, I had no idea what had come upon us. I had a throwing up, diarrhea filled, feverish, clingy little girl on my hands who had no desire to move, let alone cause her normal round of trouble.

I ended up leaving work today to take her to the doctor. I realize that any other parent might just assume that their child has a simple bug and wait it out after making sure there are some wet diapers (I had to argue with the nurse over the phone to be able to bring Addison in today), but with Chubbs' history, I run her to the doctor at the slightest little thing (call me over protective, but I do what I have to to take care of my baby) Especially with our leukemia watch that seems to constantly have me on edge-every little thing out of the norm makes me start to worry, so when my little girl showed signs of an innocent stomach bug, I freaked out.

Here she is right before we left to see her pal Dr. Costello (the bruise is from when she threw herself into a doorway while her PCA was watching her a couple days ago):
Here she is right after...(love her little shoes-I think she could be a Gymboree model):
She's just been extra beautiful
and extra cuddly today
and I cuddled her, enjoying her chubby arms clinging around my neck and her breath in my hair all the while freaking out, imagining having to deal with leukemia with my beautiful girl.

I love this little girl so much. I hate to see her sick and feeling miserable.

We'll be going in to the hospital lab to get her blood counts rechecked as soon as she's feeling better (because we're due), but thankfully her pediatrician doesn't think that today's bug has anything to do with that. 

And yes, I know I freak out over the smallest things, but can you really blame me?

Note: After waiting in the Pediatrician's waiting room forever for our impromtu appointment, I finally heard a little boy's name that I really like that Aaron sort of likes (there's no better place to have the most trendy baby names paraded in front of you)...we're that much closer to being able to call this baby something other than "little sibling" or "Addison's new chew toy"

Monday, May 9, 2011

pat on the back

Today was an off day from work (only 12 workdays left...but who's counting?), and I found myself delightfully in an unexpected guilt free zone. Normally on the days I'm not at school teaching, I spend every available moment writing, writing, writing my book. But I am currently between drafts, am waiting for a publishing meeting at the beginning of June, and as a result am in a short holding pattern...

So, I cleaned my house. I know, I am probably the most exciting person in the world.

Truth be told, this past year I have raised a rather high maintenance child, worked every other school day, kept my family in clean laundry (mostly), fed my family creatively while on a budget, did a variety of side playing gigs, kept up faithfully with my blog posts (why yes, thank you for noticing) and oh by the way wrote a book. With a schedule like that, something had to give, and more often than not, it was the housework (which you'll notice is entirely missing from the above list...no use lying about it).

So today I cast aside my writer's guilt, and attempted to move my house's status from very embarrassing to just slightly embarrassing (unless you open the wrong door too fast and objects begin to rain down on you). Chubbs of course helped, waiting until I collected dust piles before crawling over and sitting her little bum right down in the middle of the pile all ready to be swept up. Oh yes, she also dashed over while I was vacuuming and attempted to take a nice juicy bite out of the cord-broke my rollers in the bathroom-and resorted all of the paper in the recycle bin.

I folded laundry (a bazillion loads), cleaned floors, organized trash bins, plowed through piles and piles of papers on my desk AKA the dining room table, cleaned the dishwasher with a snazzy cleaner thingy, thoroughly cleaned the garbage disposal (in the process breaking it...but thank goodness it's finally clean), wiped down, dusted, etc etc etc.

Yes, I'm inordinately proud of myself. Cleaning and organizing aren't really my thing, so when they by some miracle happen, I always taken a short moment to smugly pat myself on the back and dream that this feeling of being organized will last longer than the amount of time it takes me to start piling up the papers again.

 As I will be joining the rants of the SAHM club in 12 very loooong work days, I figure the standard of my cleaning might be expected to go up here in the near future...about that...I make no promises...

Chubbs and I took a delightful break out on the lawn where she insisted on practicing her standing in the grass-the texture fascinated her. She also did a couple seconds of independent standing, making her face where she tries to get me to laugh and then falling backwards (wow she's lucky I have fast reflexes).

Anyhoo, such an exciting day, I'm sure it's hard to hear about all of the excitement you missed here today. You know, I waste a lot of energy on guilt about how my house isn't perfectly clean, but I'm slowly coming to the conclusion that it's OK that housecleaning just isn't my thing. I have other strengths (awkward pause while we all try to desperately think of something), and I do my best with the cleaning, staving away rats and debilitating mold-that should count for something. Note, I find it fascinating to read blog after blog about how to be a better housewife...but then all the reading wears me out and I have no actual energy left to institute their "34 steps to a more organized house" article...

How do you keep your house perfectly clean all of the time? (I just assume that everyone else does and I am the only failure...besides my wildly successful day today, of course)

Oh wow, gotta go. Chubbs is making noises that sound an awful lot like vomiting in her crib. The back patting must stop (for now).

 

Sunday, May 8, 2011

The head that wears the flowered hat

If you are tired of looking at pictures of Chubbs...look no further my friend-this post is not for you. If you love big flowery hats and adorable babies with just a bit of a goofy attitude...look on...

Some of you may have read my last post and thought "yeah right" with all the wonderful things that I posted about my beautiful daughter. I just wanted to to show you the amazing little girl that I am privileged to be a mother to:
Thank you to Stacey for the beautiful hat! She brought it to church and it just happened to match Addison's mother's day outfit. Isn't that a happy coincidence? (also a coincidence-Aaron picking out the same Mother's Day card for me that I bought for his Mom)

Anyway, hope you enjoy the pictures. I don't have a whole lot to say-the pics pretty much speak for themselves and I want to go back to cuddling my little girl who has been on just her very best behavior today (including sleeping until 8..if only little brother hadn't woken me up starving at 6..and then again at 6:30 to vomit up that mistake bowl of cereal...It was nice of Chubbs to do her part at least (-:)

Hope you all are having a wonderful, wonderful Mother's Day! I have been blessed with a wonderful mother and mother-in-law...fabulous lunch at the inlaws house, now I need to call my mother...perhaps I'll Skype Chubbs in.(-: