Monday, September 28, 2009

ANGELS AMONGST US - The Hands that ROCK the Cradle

When it was just me, the Sarg and our old soul we were on EASY street. A 2:1 parent/child ratio is a breeze! But, you sort of never really recognize the value of that until it's gone.

"Honey, I think it's time to have that baby sister or brother the old soul recently asked for? [pregnant pause] But, you know, I'm ok if you really don't want another."

"No! We definitely want another child. Right? TWO is what we ALWAYS talked about!"

"Great! Because I really do want Olivia to have a sibling."

Some of you have got to be laughing, knowing how this all turned out for us...

Well we're not on Easy Street anymore! Busy Street! Funny Street! Happy Street! Laughing Out Loud Street! But, definitely not Easy Street! Why? Because we now have 3 children. That SECOND baby turned into a second and THIRD when the egg split.

For years, my sister-in-law would lament the challenges of having 3 (2 of my sisters have 2 each) with time-tested classic examples: it's 2 against 1 in every argument and there's always an "odd man out" whatever you do and where ever you go. Rides are always 2-seaters, someone's got to sit alone in the waaaay back of the mini-van, and then, of course, the obvious... a parent has 2 hands to hold onto 2 kids. Which I've now expanded to include a parent has 2 eyes -- one to follow each kid; 2 legs -- one to chase each kid; and there are 2 parents -- one to pin down each kid during diaper time. That SOOOOO doesn't work with THREE! Especially when 2 of them are a pair of twins which means they share the same developmental age and require equal levels of parental supervision, guidance and protection to keep them safe and alive all while they're moving at break neck speed in 2 totally different directions. A brief glimpse of my life on Crazy Street!

So we set up your home to accommodate our three children's safety, learning and development... And, just when we've got it down and the kids are happy to stay at home, wouldn't you know it, we get invited to go to someone else's house which is not ideally set up to accommodate 3 kids -- 2 of whom are 4-year-old twins. Generally, the invite comes from family because most people outside of the family are not interested in play dates involving more than one kid. And, going to other people's houses -- especially if they don't have young children -- presents a new set of challenges. There are untold dangers lurking around every corner. We parents of multiple wee ones have to worry about :

1. Not breaking any of the hosts beautiful decorations. My house is completely childproofed... read: devoid of beautiful, breakable decorations... So, we don't have them anymore. They've either been removed or broken;

2. Whether sharp objects like scissors, knives and tools are in locations accessible to little ones. Ours are all in locked drawers or out of reach cabinets.

3. Not falling down the stairs that have no baby gates. There's a locked baby gate at the top and bottom of each stair case and at several door ways in my home; and

4. Not taking a dive into their swimming pool (doesn't matter if it's open or closed).... Because my guys can't swim yet. You see, the toddler swim lessons at the local pool require an adult for each child and are only offered when daddy's at work.

When visiting others, help is welcome but generally not available. I absolutely do not expect anyone to watch or care for my children but me... and my husband! I recognize that other guests have come to this party to socialize and NOT to watch my kids. So, I accept that my role is still to parent and not to socialize all that much... Mostly, I'm running around -- calmly on the outside, frantically on the inside -- in search of one or more of my children to ensure their well-being... And, if I'm not worried that they're still alive and still on the premises, I'm thinking about whether they've had anything to drink. Did I bring the apple juice? Have they and will they eat what's available? Did I bring the Tostitos? Are they appropriately occupied? Not watching x-rated movies with the teenaged boys? Do they need their diapers changed? Or, have they exploded all over the hosts house? Are my children hurt? Have they broken anything -- bones or the host's valuables? Are they lost? Or, visiting with pets they shouldn't be? And, the list goes on, specific to whose house we're visiting.

This weekend was different! This weekend we had the good fortune to visit the stunningly beautiful home of my cousin, Bridgette, and her family for a reunion of my mom's side of the family with all of my cousins. By the way, our host, Bridgette, also has 3 kids. Looking at them now -- all middle-school aged and above -- there's no evidence whatsoever that she ever went through this frenzy that I experience every time we visit a new house. Makes me wonder if this is really a twin-specific thing versus a 3-kid thing. Anyway, there we are in a meandering home with rooms off of rooms off of rooms where comfy chairs grace nooks and crannies at every turn. Multi-level patios look out on the 7-acre grounds of manicured lawn and surrounding woods. Steps lead to an in-ground swimming pool and picturesque fire pit and there's a trampoline at the edge of the clearing. Quads are parked in the long and winding driveway, waiting for drivers to choose any one of multiple paths that lead off into the woods. It's a shangri-la. Their own Private Idaho which she opened up to the likes of us! Ha ha.

Sarg parked himself in the kitchen 5' from the door to the downstairs playroom -- with a view of the 1st floor office-turned-playroom. (Bridgette informed us that hand-me-down toys were moved upstairs specifically for our taking... Home! Please!) I parked myself outside on the upper deck with a view of both the exit door from the tv room and the lower deck sliders leading out to the yard which exits through the office connected to the basement playroom. It' a jump and a skip (or a bee-line for the boys) to the pool from there! Aptly stationed... we stood guard!

As it turns out, Sarg was able to have a lengthy and in-depth conversation at the kitchen table with Cousin Tom and I caught up with cousins Rosalie and Jim while the children played nicely. Quietly. Supervised, cared for, followed and otherwise entertained by two of Bridgette's children and one of Jimmy's kids: Patrick, Joseph and Daniel attended to Brian and Michael like pros! They were having so much fun that Olivia and some of the other kids joined in. They all played. They all ate. They all jumped on the trampoline. They kicked the soccer ball and threw the football around. They watched Finding Nemo in the tv room and Star Wars in the Club House. Played sword-fighting in the basement playroom and robot in the office-turned-playroom upstairs. Even their cousin Tara pitched in to intercept Brian's solitary bee-line toward the pool. Amazingly, neither he or his brother even bothered to try it again. The big kids were so engaging, the little kids had no reason to stray. Patrick and Joseph helped my boys onto and off of the trampoline. Daniel escorted them back up to the house (avoiding the pool). In between, Patrick even helped Olivia perfect her trampoline handstand and gave her a ride through the woods on the quad... After which Tim and I HAD to take turns giving Brian and Michael rides as well.

Great fun was had by all. Even, and maybe especially, by the Sarg and I because we so infrequently get the chance for child-free adult conversation (or to ride quads)... All my thanks to the next generation of cousins. These wonderful kids brightened our world this weekend. Their bright light shone, not at the end of the tunnel, but right here in the part we're traveling through right now. What a wonderful band of angels my cousins are raising. They should be proud of their beautiful children and the gift they gave so willingly to me and mine without even being asked.

Here's to my cousins' children... Angels amongst us!

Sunday, September 27, 2009

Don't Let the [Mommy] Parade Pass You By

Do you think, in her day, that Charo dropped her own kids off to school in the morning? Stop for a second and imagine what that might look like. (Or are you not old enough to know who Charo is... yikes!) I'm not sure if she did but I don't even have to close my eyes to picture it. I just have to be at my daughter's school at 8:05 AM Monday through Friday to see Charo (or her look alike) "cootchie, cootchie" her child to school. I LOVE people watching and the Mommy Parade that takes place every morning ranks amongst the best!

I was thinking, you can tell a lot about a mommy's life by her drop-off attire, demeanor and routine... It's like a fashion runway of sorts. So, without further ado, welcome to the Mommy Parade. The most diverse runway show around:

This morning, the Charo-Mommy is dressed in skin tight, sparkling black, leather-look leggings with hot pink Candies (Remember those sandals? They're back!). She's paired these with an equally tight fluffy white short-sleeved, low-cut, scooped-neck angora sweater and, in keeping with today's look, a lacy, hot orange Victoria's Secret peek-a-boo-strap, push-up bra that's working double time this morning. Her big blonde hair is perfectly coiffed in a Dolly-Partonesque-style and her nails -- fingers and toes -- are impeccably splashed in matching hot pink and orange with white feather air-brush art tastefully dabbed on each. Make-up, it would seem, has been applied professionally this morning. We'll have to ask her secret. She has definitely NOT given up on herself. And, her bubbly personality matches her flashy wardrobe.

Three cars back, here comes Going-to-the-Gym-This-Morning Barbie-Mom. A cute little pixie cut frames her impeccably but naturally made-up face and the baby blue spandex-enhanced velvet capris with matching cropped jacket that are gently soothing to the eye and, I'm certain, the touch. The outfit is complete with the requisite white leg and arm stripes and a matching white iPod Nano strapped to her bicep with a soft pink cell phone clipped at her waist (in support of Breast Cancer Awareness). Oh, and there it is folks. The pedometer right beside the phone. Yes, it's a good "I still take care of myself" look as she bounces down the runway, with her matching daughter, to the school's lobby doors.

Business Mom has just left her child at the front gate. With a quick hug and an over-the-shoulder wave, she turns and we see she's wearing navy blue and pinstripes today, tailored into a well-cut and well-fitted pantsuit. The ensemble is topped off with a feminine white cotton blouse and tastefully understated pearl accessories. Keys in hand, we can see her fashionably pointy and spikey high-healed shoes are not quite as practical as her professional business look but she's making it work... like everything else. Get out of the way, ladies, she's in a rush to get to the office this morning.

Safety-Drop-Off Mom rounds the corner, making a Brooklyn stop (meaning she's cruised through the stop sign with a brief tap of the brake just to satisfy the traffic officer who might be watching... the Crossing Guard recognizes her car and knows her game). She's disregarded the Mom at the opposite stop sign and cruises into line to take her place on the mobile runway that is the Safety Drop-Off. Though we can't see the entire ensemble, the t-shirted shoulder at the driver's window is doing the Miss America wave to the other runway contestants she knows. Uh oh, looks like junior forgot to grab his back pack. Vaguely annoyed, she jumps out and rushes around the front of the vehicle (inconveniently holding up the line), and we see she's sporting fashionably shabby-chic jeans with faux wear on the butt and thighs. And, I'm wrong, it's not JUST a t-shirt ladies, it's bedazzled across the chest with "Old Navy" in faux Austrian crystals. Pony-tailed hair and Ked's slip-on sneaker skids complete the look. Very young. Very today. Simple but chic. Naturally she is sans make-up and it looks good on her, girls!

Looking down the runway, the Mommy Parade continues.

Around the corner, the I-don't-follow-the-Rules Mommy has pulled to a stop in the "No Stopping" zone. As she shouts "Hurry!" and "Have a great day!" to her child, we see she's casually dressed for a work-at-home day today in black stretchy pants and an oversized t-shirt. As the automatic door on the mini van slides closed behind her child she hits the gas to avoid the wrath of the principal who's out there trying to keep the de-busing zone car and clutter-free for the arriving buses (whose unlucky moms miss the parade every day).

The Stay-at-Home Mom is bringing up the rear. Pushing a double front-to-back stroller, the under basket is filled with backpacks. There are 2 children behind her meandering along. She keeps up a casual pace (because she can) in her flowered capris, comfortably paired with an empire-waisted Vera Wang apron top. Reasonable leather flats are perfect for walking this morning. Her hair is neatly combed and held back with a modest head band. Yes, it's a good, relaxed, put-together look.

Here comes New Mom (sometimes referred to as "Pajama-Mom") rounding the corner. She's passing Stay-at-Home Mom with the car-carrier baby carriage. Not sure she's done her hair or make-up this morning and those might be lounge-pants with matching top (I saw them at BJs Warehouse last weekend when I was Food Shopping with Disco Danny). Very comfortable for lounging... and apparently for running to school with your little ones. It's a classic New Mom look folks. Gotta love that!

And, then there's me! Yes, I'm an integral part of the Mommy parade in my own right. I fit right in and I am not alone. Here I come, the Haven't-Left-The-90s Mommy who prefers to be known as the I-Know-I'm-Outdated-Stay-At-Home-But-Have-Too-Much-To-Do-To-Bother-With-My-Outfit Mommy. At least I'm dressed, right? I might be in jeans or capris in the circa 1995-style -- either inexpensive or, more likely, the only ones that still fit me (maybe both) -- and I'm probably wearing a Kohl's special, extra-long printed T shirt -- either the bright orange one with recycling emblems or the lime green one with tie-dye peace signs donning the front. I've done my hair and make-up on the run so it's a halfway there frazzled look that goes with the clothes (halfway dressed, halfway to 2009 or halfway to school? I'm not sure). My running shoes are strictly practical because I'm always on the run but not to the gym, though I'd like to be. I NEVER park in the no-stopping zone (rule follower that I am... Besides, I don't want the principal yelling at me... ever again!) and I wait and watch my child walk her own runway. SHE is impeccably coiffed and dressed in perfectly appropriate and up-to-date -- but absolutely NOT-HANNAH-MONTANA-ish -- 7-year-old attire. I stand on the sidewalk outside the open door of my 10-year-old mini-van so the boys can wave goodbye with me. (I can't be the Safety-Drop-Off Mom even if I wanted to because the automatic sliding door doesn't work anymore.) I shamelessly blow kisses to my daughter, waving and openly hugging myself (as a symbol of hugging her) before she reciprocates then disappears through the doors. With an ear-to-ear smile and love in my heart, I'm off for the boys' morning drop off and another eerily similar Mommy parade but with a Queensie twist. The NYC burrough of Queens has it's own special style that includes a lot more Heel and Hairspray.

This Mommy Parade takes place in Nassau County. Also known as NYC suburbia! It's a fascinating mix of people, cultures, types and styles. And, I'm sure I offer the other Moms as much people-watching entertainment as they offer me. We are a melting pot of moms. We all know each other. Respect each other. We say hello every morning as part of our Mommy Parade morning routine. And, our children play together on the play ground after school. We mommies clique just like the kids despite our best efforts to discourage them from it and despite our different styles. Because underneath it all (and I'm not talking skivies, God help me, but deeper than that), we are all Mommies who love our children and are doing what we can and need to... not just to get through the day but to embrace our roles and our lives.

I LOVE the Mommy parade!

Still, next year, when the boys (who, in case you didn't hear have an extra 21st chromosome... commonly referred to as Down syndrome) attend kindergarten back in our home school district, I hope to graduate to the "Stay-at-Home" Mom with the stroller full of kids and backpacks and a more up-to-date but still practical wardrobe.

A girl can dream....

Saturday, September 26, 2009

Down Syndrome Awareness -- Waiting to be Insulted?

I've been struggling with something for awhile now -- 4 1/2 years to be exact --pertaining to the use of labels or descriptors when referring to a person. Specifically, I'm trying to decide whether I'm waiting to be insulted by semantics or if there really is something behind the words. Admittedly, mostly these words I find insulting are not spoken maliciously (though sometimes they are) but maybe just with a lack of awareness that they might hurt.

Generally, it's hard to insult me. Heck, I have a talent for over analysis and can usually turn an insult around and somehow feel less bad about the spoken and the speaker. But sometimes words are NOT just words. Take the "N" word used to describe people of African descent. Take the "R" word that us mothers of children with special needs hate so much. Words are sometimes more than words depending upon the meaning society has assigned to them. Further, the word may have negative connotations specifically for the listener. Sadly, for the speaker, these meanings may not have been their intent. But, since "perception is reality" then my struggle is not unfounded. For me, some words or the way they're used -- even the position in the sentence -- CAN and DO hurt my feelings somehow.

It doesn't bother me when I hear someone say, "the blonde girl" or "that tall man". I think because having blonde hair or being tall is thought of as good... attractive... in our world. No one who is height-challenged likes to be called short and I didn't appreciate when an ex-boyfriend said to me, "wow, your hair is brown. JUST plain, old brown!" But, when I hear someone say, "that fat kid" or "an autistic boy", I cringe for the person and for their mother, father and siblings. Sure the kid may be overweight and, yes, the boy might have autism. But, that is not all they are. I guess what I'm saying is that I am sometimes insulted when the descriptor precedes the person... especially when the descriptor has negative connotations. I'm saddened that the description, coming first, has been given more importance than the individual. Maybe I feel this way because of the negative connotations our society has assigned to Down syndrome... and other descriptors like "fat". In my mind, the underlying negative connotations reduce the value of that person.

For me, the specific semantics in question were used to describe 2 of the people I love in this world more than life itself. My beautiful boys. Recently, talking about my amazing children who happened to have been born with an extra 21st chromosome, a good friend said, "... it's not because they're Downs kids..."

"OUCH"

I love my friend and I know she certainly didn't mean to insult me. Nor do the countless people who refer to my children this way. And, so many who refer to their OWN children this way. I hope. Still, I am bothered... deeply... by this phrase.

Do you see my children as "Downs" first?

And, does that make them "less" than a child without Down syndrome?

Of course, I know my kids have Down syndrome so the statement is not technically incorrect. I accept my children's Down syndrome. And, I accept that we may encounter limitations in some of their abilities... though so far, we have not!!! (Delays here and there, but not limits!) It's the term "Downs kid" that bugs me incessantly. It's NOT a cute little nickname for the syndrome my children have. And, it DOES put their potential disability before the wondrous people they are. Let me ask you this.... would you refer to that fat kid as "that FAT kid" to the mother of that child? Would you even say "that FAT kid" to any other mother on the playground lest they think you insensitive?

All over the internet, people like myself are working hard -- blogging about our children -- to dispel the negative connotations associated with Down syndrome. But, the truth is, more often than not, I think, people pity me because my sons have Down syndrome... as though I've been cheated out of the sons I should have/could have had. I have the most perfect children in the world and I would not change anything about them. They are perfectly imperfect just the way they are. BUT, the world still thinks of them as less than those of us who have only 46 chromosomes.

As such, PLEASE, consider changing the way you refer to my children -- or any kids who happened to have been born with an extra 21st chromosome -- to "children with Down syndrome" or, even better for me as "Brian & Michael". Consider that the direct or underlying meaning YOU have assigned to any particular descriptor is NOT the one that the listener may HEAR when you refer to her children as "Downs kids" or "that FAT kid". Unfortunately, in this case, my talent for over analysis actually brings me to the negative connotations AFTER my own positive thoughts about Down syndrome... which are, it's really no big deal! But, the societal meanings are still generally negative and ultimately, that phrase, "Downs kids", does bring up negative feelings for me because I think you might actually believe all those negative things you hear about "those kids".... The ones that have Down syndrome, like mine.

Sure, there are some descriptors that don't seem insulting... but you never know how the listener perceives the descriptor... true or not. Perhaps the blonde girl's mother fought the negative connotations of being a "dumb blonde" all her life and hopes her child will not face that same discrimination. Perhaps, the person you're discussing "that FAT kid" with just lost 100 lbs and spent their whole life ridiculed for being overweight. Perhaps the mother of "that Downs kid" believes you see her child as a retard (an insulting word, for sure). Her perception IS her reality!

So, if you absolutely have to use the descriptor because it enhances the conversation somehow... then try putting the person before the description and use a description that is factual and NOT slang:

a boy with autism (not an "autistic boy")
a child with Down syndrome (not a "Downs child")
the little girl with the red shirt (not a "fat kid")

In truth, unless you're specifically talking about Down syndrome... there is almost no reason for you to include that descriptor in any conversation about my children. Am I waiting to be insulted? No! With much more over analysis than I've even voiced here, I don't think so. I am just trying to educate the public to be more sensitive to the feelings of everyone around them. Words CAN hurt and the listeners perception IS reality.

Perhaps there is a GOOD and TRUE and HELPFUL way to phrase your comment. But, if it is not GOOD and TRUE and HELPFUL (all 3), perhaps it's better left unsaid.

Thursday, September 24, 2009

THANKFUL THURSDAY - Overwhelming Moments

Sure, I've had a few overwhelming moments this week. Like when the neighbor's painting and power washing crew blew questionable (read: maybe lead-tainted) paint chips all over my children's play area and toys yesterday. We all have them (overwhelming moments, not leaded paint chips... hopefully). But, you know what, they were only moments and they did not define my week... Thankfully!

[1] THANK GOD the aforementioned paint chips turned up negative for lead content according to the Department of Health - Environmental & Lead Poisoning tester, Gil. I know Gil and his boss, David very well... Unfortunately, I guess you could say. See, I've just been cut loose from 3 years of monitoring to remove lead from my home and property. Back in 2006, the boys tested high for blood lead poison. As such, their blood and our home has been monitored and tested and we've been advised and assisted in removing leaded-paint from our almost-200-year-old home... by Gil and Dave. When the power-washing incident happened, I called Dave and he immediately sent Gil out to our house in one of those big, DOH-HAZ MAT (read: Department of Health Hazardous Materials) trucks to test. No matter who you are, that's a scary truck to see parked anywhere near you're home. But, I think my neighbors started to get used to it... though it scared the power washer away. Thanks guys for being there... or here... to ensure the safety of my children AND all the children impacted by environmental lead poisoning.

[2] I LOST 1 1/2 LBS this week. YEAH!!!! Thanks, Weight Watchers, for a program that works. At this rate, I should look half-way decent in a bathing suit by next summer. Too long you say? Hey, that's better than looking indecent in my suit next summer. No?

[3] Here's a weird thing to be thankful for... Brian's illness this week. I'm grateful that we got the lighter and speedier version of what's been going around... and that no one else got it!!! A mild fever for 2 days with NO other symptoms and we're back in the swing of things. With or without Down syndrome, that's like a miracle given what every other kid I know is experiencing! We had: No vomiting. No coughing. No remnant cold. No sinus infection. No ear infection. No restless sleep. Just 100.2 for 2 days... then gone! Now you see why I'm thankful?

[4] I'm also thankful for my father's medical coverage and for the care he's getting (before it all changes). He's been having some memory loss issues and we've been going for a few tests (understatement) to determine -- or at least eliminate -- physical causes besides old age. For my dad -- so far anyway -- the Medicare system is working.

[5] I'm grateful for the beautiful, if not brief, Indian Summer we're experiencing. I'm still having a tough time letting go of summer so every day that approaches 80 degrees soothes my soul.

Take a moment to focus on the good moments instead of the rough ones. God knows it could have been a lousy week for me... but it wasn't. The good moments overshadowed the bad ;o). May it always be so!

Special Exposure Wednesday - My Merry MerMen


The boys favorite bath time fun is to lay down with most of their heads -- but especially their ears -- underwater, faces protruding and talk to each other fascinated by that muted underwater voice. They finally caught on that they can't turn their heads to look at each other without nearly drowning. LOL!

Yes, they are identical! Though they look so very different from each other here. Can you believe there's only a 3 lb difference between them? Maybe it's the water? Or, the angle? Weird huh?

Sunday, September 20, 2009

Down Syndrome Awareness -- DS Character Traits... Or, Are They?

I always found it interesting to hear mothers whisper about how all the less-than-desirable traits their children displayed could be attributed to their husbands while the cute or smart traits were claimed as their own genetic donation. Having children is an amazing amplification of our own and our spouses' traits -- strengths and, sometimes, weaknesses -- all wrapped up in this human being that we love so dearly.


You've probably heard by now about my daughter, Olivia, and Brian and Michael... my 4-year-old identical twin boys who happened to have been born with an extra 21st chromosome (aka Down syndrome). Like every parent, I am overwhelmed with love for all 3 of my children. They are nothing short of amazing in the eyes of absolutely everyone who knows or meets them. That said, the boys -- being 4-year-olds -- occasionally display some less than desirable traits... (For those of you who are thinking, "what about Olivia?"... Yes, she does too!) I know, Bad Mommy for putting that on a blog for all the world to see. God forbid someone should know that my perfect children are imperfect. Or worse.... "normal"!


Yes, it's true. Sometimes even my kids with Down syndrome behave less than perfectly! For instance, just last night, Brian threw his first little temper tantrum (first at 4 isn't bad) because he wanted to wander off in search of Daddy who'd gone to purchase ride tickets at an absolutely AWFUL amusement park called Boomers (saving that experience for another post)! I was actually surprised at just how unruly both boys were behaving... though admittedly it was only marginally bad compared to the behavior of other children I've seen. But, these were MY kids... and I was a tad embarrassed, truth be told.


So, this morning as I pondered Brian's odd behavioral outburst -- his wriggling free from my grasp to lay down on the ground crying and pining for his Daddy -- I thought maybe he was too tired, too hungry or getting sick. Sadly, it also occurred to me that folks around the park might have attributed his behavior to the fact that he has Down syndrome. This is SO not the case. You see, he's always had Down syndrome but he's never behaved the way he did last night. Which is why I got kind of ticked off this morning as I was thinking about it.

I have seen countless children throw themselves to the ground kicking and screaming and none of them had Down syndrome. And, I'm guessing that most people don't walk up to that child's parent to assign blame to their genetics for the behavior. More often than not, they probably -- often wrongly, usually secretly -- blame the parents for improper training. Sure, I've gotten the "Can't-you-control-your-kid" look on occasion. But, unfortunately, when my child acts out or displays any less than desirable behavior, people have actually had the nerve to say to me, usually with pity and a shake of their down-turned heads, "It's the Down syndrome. You know they're very stubborn!"

Oh? I'm sorry, do you have a child with Down syndrome? And, what 4-year-old do you know that doesn't show signs of stubbornness, using their bad behavior to try and get what they want? Let me tell you, I stood my ground. I didn't let Brian get up and go find Daddy. So, the next time, when he DOESN'T throw a tantrum but waits patiently... is that ALSO because he has Down syndrome? Or is it because, as a parent, I addressed the situation appropriately?

On the flip side of that behavior coin, when my children wake up happy, or laugh with glee at something they find humorous, or greet someone they like with affection, those very same strangers say to me, often with envy, "It's the Down syndrome. You know they're all like that!"

Hmmm? You know what... it doesn't work both ways. Matter of fact, it doesn't work at all to constantly blame the Down syndrome for every little thing my boys do or don't do.
I, for one, am tired of the stereotypes. I'm tired of hearing every one attribute every negative aspect AND every positive aspect of my children's behavior to Down syndrome. How about their behavior is just their behavior because Brian is Brian and Michael is Michael? And sure, I'll take some responsibility for how they are and how they choose to display their behavior. I am their parent and, as such, it's my job to teach them right from wrong. And, it's my blood, and my husband's, running through their veins. (See a little stubbornness in there? I can't imagine where they get it from!)

Maybe my 4-year-old watched your child that doesn't have Down syndrome throw a temper tantrum in the supermarket and get rewarded. Maybe my 4-year-old is stubborn because he's 4 and it serves him well as he investigates the influence he has on his world... and not at all because he has Down syndrome. Maybe my boys who happen to have an extra 21st chromosome wake up happy because they're like me. I wake up happy every day! That's right, every morning with a smile on my face mostly because it's another day I get to spend with my kids. For that matter, my daughter wakes up happy too... and she doesn't have Down syndrome. So, maybe my kids are happy because genetically, they're MY kids and not because genetically they have an extra 21st chromosome.

Women are not dumb because they have blonde hair. People are not smart because they wear glasses. And, my children are not stubborn or happy because they have Down syndrome. They are those things and so much more because they are themselves. Yes, Down syndrome is part of who they are. But, it does not define them. It does not govern their every behavior or emotion. My children are their own unique selves. They are Brian and Michael. They are sometimes stubborn. They are usually happy. Genetically, they are MY children! Isn't that just SO obvious?
I have found in my extraordinary life that yes, white men CAN jump... Just because they can and even if they have Down syndrome!

Saturday, September 19, 2009

September is Childhood Cancer Awareness Month

I cannot even imagine the pain and fear that comes with a diagnosis of cancer for one's child. Now take a moment to consider what the poor children go through. Having identical twins with Down syndrome, this is probably my greatest underlying fear with regards to their health... because children with Down syndrome are at a greater risk for developing juvenile leukemia. But, there are so many childhood cancers and so many children fighting for their lives every day it's hard not to worry about who is next.

Did you know?

  • Each school day, 46 children are diagnosed with cancer.
  • On the average 12,500 children and teens will be diagnosed with some form of cancer each year in this country.
  • One in 330 children will develop cancer by age 20.
  • Although the 5 year survival rate is steadily increasing, one quarter of children will die 5 years from the time of diagnosis.
  • Cancer remains the #1 disease killer of America's children – more than Cystic Fibrosis, Muscular Dystrophy, Asthma and AIDS combined.
  • In the U.S. almost 3,000 children do not survive cancer each year.
  • Over the past two decades, only ONE new cancer drug has been approved for pediatric use.
  • Currently there are between 30-40,000 children undergoing cancer treatment in the U.S.
  • As a nation, we spend over $14 BILLION per year on the space program, but only $35 MILLION on Childhood Cancer Research each year.
  • There are 15 children diagnosed with cancer for every one child diagnosed with pediatric AIDS. Yet, the U.S. invests approximately $595,000 for research per victim of pediatric AIDS and only $20,000 for each victim of childhood cancer.
  • Research funds are scarce as most money is diverted to well-publicized adult forms of cancer, such as breast and prostate.
  • Right now, this second, somewhere in America, there are 7 children fighting for their lives who won't live through the day.

So what can you do?

  • Wear GOLD for our kids!! When people ask who you're wearing gold for, TELL them!! It's for the thousands of children who have and are fighting childhood cancer EVERY day!
  • Go eat at Chili's on September 28th! They will be donating 100% of their profits to St. Jude's, a leader in Childhood Cancer Research.
  • Register at marrow.org and become a bone marrow donor! It's quick and painless and you could save someone's life!!
  • Donate blood as often as possible! Kids on chemo receive countless transfusions and blood is always in high demand!
  • Take a meal to your local Ronald McDonald House or children's hospital to give to a family there, it will be SO appreciated! Stick in a card just to make them smile! The days and nights are long, and anything to break them up is a welcome relief!
  • Most of all, just don't forget… Childhood Cancer Awareness should be EVERY day! Who do YOU wear gold for?
A Poignant Message From the Folks at Saint Jude's 6A Wing


* These facts and the video were excerpted from Renee's post on 5 Minutes For Special Needs. (Click the link to read the post in it's entirety.)

Friday, September 18, 2009

Food Shopping With Disco Danny


I know I'm in good company when I say that I love classic rock and roll. But, admitting that I also love all those late 70's-early 80's disco tunes is like coming out of the disco closet in my Z-Cavariccis and Capezios. So, there it is... I'm out. Every time I hear one of those old disco songs I'm flooded with some really good memories of great times spent with my friends going out dancing every Friday night! These memories make me happy.


So, I recently realized that the reason I like going food shopping at BJ's Warehouse is because they play all those great disco songs that I loved so well back in the day.
Do you remember those elevator music machines that used to play 50s' doo-wop and big band tunes? Well, now they play 70's & 80's stuff... which is considered "oldies" because we're nearly to the year 2010 now. Can you believe it? Anyway, last week I was shopping at BJ's Warehouse when one of those great old disco songs came on the MuZak. "Tragedy" by the Bee Gees filled the air. I'm one of those people that sings softly -- but out loud -- sometimes mouthing the words when I hear a favorite old song on the radio. And, in keeping with my 80's disco persona, I am also the girl who bopped on the side of the dance floor much more often than I actually got out there and boogied. So, there I am looking for Good News Razors when the Bee Gees harmonic voices fill the air. It's an automatic response as I begin singing softly "...when the feeling's gone and you can't go on it's TRAGEDY!" And though I'm probably singing the wrong words, I'm enjoying the heck out of it anyway when all of a sudden, Disco Dan pops up behind me and starts to boogie down. He's belting out the lyrics at a greater-than-conversational volume so everyone in the aisle stops to see what all the commotion is. To what should have been his embarrassment but was mine instead, he links his hands and starts rolling his arms like John Travolta in Saturday Night Fever. You know the move! Shaking his hips back and forth and singing into the pen that he was previously using to cross off items on his shopping list.

I was absolutely LOLing with my face buried in the boxes on the shelf!

Hearken back for a moment, to those guys at the disco who would shuffle up and start gyrating right in front of you for 30 seconds before they'd actually ask you to dance with a nod of the head and then a quick glance toward the dance floor? You know, one of those, "you and me, out there?" kind of gestures? He HAD to be one of those.... almost 30 years LATER! OMG, I avoided those guys like the plague and now, because he overheard me quietly singing the wrong words to what might have been his favorite disco tune, he's on me like Tony Manero on Stephanie in Saturday Night Fever from the moment she steps onto the dance floor at the 2001 Odyssey Disco in Brooklyn, NY. It's 1978 again!

I hastily decide to fore go the razors -- I'd rather hubby grow a beard than hang around this aisle any longer -- and I high-tail it to the check-outs with a quick stop at the cold cut counter for lunch meats for my children.... That's right buddy, I am a happily married, mother of 3 and NO, I don't want to dance with you. LOL!

My order is already on the belt when suddenly... Disco Danny sidles up behind me. He's offered his spot to the person behind him in the next line and quickly switches to my line. Seriously?!!!! (I can't make this stuff up!) And, he starts bustin' his moves again, waving both hands high up in the air as he rotates his hips in a circle. He's really getting down now... LOL and OMG! I'm mortified. What the heck is he doing? Still belting out the lyrics to the new disco song featured on the MuZak into his makeshift microphone, he boogies right up to the credit card keypad and continues demonstrating what I'm sure were his best moves.... 30 years ago. I've packed my items in record time and now I have to pay... BUT he's commandeered the keypad and is using it as a prop for his disco pole dance.
"Excuse Me", I say politely, avoiding any eye contact whatsoever lest I give him the wrong idea. He gives it his last shot and does the most famous Saturday Night Fever move ever... Right there in BJs! His right arm shoots up in the air, right pointer finger pointed skyward; his left hand is on his overgrown waistline; legs-splayed/left leg straight, right-knee-bent.


This is SOOOO not working for me! In record time, I swipe my card, punch in my 4-digit code and just about run from the store with the receipt flying behind me like a flag. I didn't stop at the door to show my receipt to the clerk. I knew I wouldn't be safe until I'd packed my groceries into the car, buckled my seat belt and locked all the doors. God forbid he catches me in the parking lot without other people around to hear me scream! LOL! I drive out the wrong exit on the far side of the parking lot -- way too fast -- avoiding the store entrance just in case Disco Danny decided to go for broke. Who knows what fancy disco move he'd pull out of his white polyester leisure suit sleeve.

Yeah, I love the old disco tunes. But, not so much the old Disco Dannies. What a bummer! I guess I'm gonna have to rethink my quiet singing and sideline bopping in public!

Thursday, September 17, 2009

THANKFUL THURSDAY - The Biggest Loser

God knows having children -- any children, but maybe especially children with special needs --puts a great weight on mothers to do more, try harder and go that extra mile to help our children accomplish even the smallest milestone, task or rite of passage. Speaking for myself, nothing is taken for granted and every developmental step is won with blood, sweat and tears. For the past 7+ years, my life has been dedicated to the care of my 3 children -- 2 of whom were born with Down syndrome... my 4-year-old identical twin boys, Brian and Michael. As such, I willingly put my wants and needs temporarily on the sideline to attend to the needs of my children. But, beginning today, without sacrificing any of my efforts on behalf of my children (because they attend full-time preschool), I'm happy to announce that I'm coming off the bench and getting in the game again. I'm doing something for me!

I'm working my way towards being the biggest loser starting today... a Weight Watchers loser, that is. So, my thankful list is in keeping with this exciting theme...

[1] I'm thankful for the opportunity to finally be able to do something good for myself without the guilt of having to sacrifice time with, money for, or attention to my family.

[2] I'm grateful that this opportunity has finally presented itself while I'm still physically able to take advantage of it. I'm not so far gone, not too old, not too fat and not too mentally lost (I hope, LOL) to make a come back on my own behalf.

[3] I'm am ever so thankful that I've had the wondrous opportunity to spend these last 7 years totally focused on my children without having to be torn in half working, like so many others. I can't say some of the sacrifices weren't difficult but I've been incredibly lucky to be able to stay home with my babies.

[4] I'm thankful beyond words that my boys have grown and developed so well that they are able to attend an integrated pre-school with their typically developing peers. This is nothing short of the Amazing Grace of God.

[5] I am beyond thankful to all the people who have dedicated their lives to helping Brian and Michael and to helping ME to help them achieve as much as they have... all working together! And, I'm thankful for all the people down at Weight Watchers who are about to help me succeed so well on this new journey.

Every day is a new day. Live it to the fullest!

Sunday, September 13, 2009

LABOR Day Revisited

Labor Day with a Twist

Each year, as the summer draws to a close, we gather together with our families for one last summer barbecue, pool/beach fling to celebrate… Labor Day? I spend the first half of the day chasing my 4-year-old identical twin boys who happen to have been blessed with an extra 21st chromosome (aka Down syndrome) away from my sister’s pool. Hopeful, but, in the end, unsuccessful at putting off actually donning my bathing suit in front of family and friends yet one more time and squeezing the little guys into their swimmy diaps, bathing trunks, floaty suits and life vests… all at once – in a feeble and barely successful attempt to keep their beefy little chins above the water line – to let them swim one last time before school starts. This year, in the midst of my back-to-school frenzy I gave some thought to this particular, if not somewhat peculiar, celebration. What and why is Labor Day?

Many years ago, during the times preceding the American Industrial Revolution – what’d we call those, the Dark Ages? -- rules governing labor were necessary as laborers were pushed for untold hours with little or no reward for their efforts all to someone else’s benefit. It was right and necessary that someone stand up for the poor laborers and institute controls to protect their health and well-being. The process of instituting labor rules is how Labor Day came to be. 8 hour work days. Hour-long lunches. Regular breaks. Weekends off. And, more!

So, here's my twisted rant… LOL

Well, let me tell you, I know all about laboring! I do it every day, for long hours and without a break! What mother doesn’t? Where are the rules governing motherhood-associated labor?

In the old days, laboring was productive. It started out where you were pushed [to push]… by the midwife. You worked hard, sweating, not able to shower or change your clothes or brush your hair or freshen up your make-up, sometimes for days without a break, and the output was a wonderful product you could be proud of… a beautiful healthy baby. Today, with all the in-vitro procedures (where's the labor in that?), drugs and epidurals, who labors? Mothers are wheeled in at the convenience of their Obstetrician’s schedule without ever having felt a single contraction. They’re shot up with Pitocin to bring on the labor, and then given an epidural so they don’t feel the pains of labor. Once they’re comfortably numb, they’re sliced and diced, and their babies are carefully removed by a very well paid doctor who’s spent no more than 20 minutes in the O.R. with the barely laboring mom. No one’s pushing or laboring much at all anymore. Pain killers ensure that we feel little if any post-labor discomfort. Nurses whisk the baby away to care for them completely while Mom freshens up for the well-wishers who come to share their congratulations. The baby is in the nursery down the hall being fed and burped and changed. Meals are delivered, flowers decorate the room and mom is encouraged to sleep! This makes us believe that the LABOR of motherhood will always be so well-controlled and evenly distributed across many helpers who each take a piece of the task just as Labor rules intended.

So far from the reality! Motherhood is not an assembly line. It's a sole proprietorship!

I’m up at dawn doing laundry, stowing dishes, packing the dishwasher, sweeping (no vacuum; too early; it’ll wake the kids). Then onto readying the outfits, lunches, snacks, backpacks and breakfasts for my 3 children. I feed and water the cats then clean out the dog’s eyes with saline solution and cotton balls and alternate medicating/moisturizing them as I do every day, five more times throughout the day. An hour later, and most days, I need to gently force all 3 kids out of bed, down the stairs, into clothes and food in their mouths to ensure a timely start to the day. Somewhere in there, I gobble down a Fiber 1 bar… my breakfast. I’ve been up now and working for 2 hours with no breaks yet. I put the kids, their carefully loaded backpacks and refilled juice cups into the car, buckle everyone in, grab the hair brush (because Olivia hasn’t done that part of the morning routine on her own yet? Still?), my keys and phone (just in case someone needs to reach me), and begin the first half of my 3-hours/day school drop-off commute. I drive the old soul around the block to get in line in the traffic-jam that is morning drop-offs. I circle the block twice to find an open and legal spot. I jump out, brush and braid her hair, help her strap on her backpack, instruct her to kiss her little brothers goodbye and keep watch as she pleasantly meanders up the walkway, saving worms, picking clovers and finally vanishing into the halls of academia with its own special set of rules and regulations also meant to improve (read: control) the outcome. Once she’s out of sight, I jump back into the car for the 50-minutes-in-morning-traffic drive to the boys’ school. Keeping up the lively conversation, I-spy game-playing, color-naming and singing all the while lest I lose my job to a more competent…. ?Bus driver/bus matron team? who can do it in a more-timely but less-fun-for-my boys fashion… as their teacher reminds me daily when we arrive late… again. We pull into the parking lot and search for a spot as close to the door (ha!) as possible. Our arrival, inevitably 10 minutes late, results in a hasty de-car-ing process. Even still, as a quality mother I cannot skip the teaching moments as the boys learn about how to clip and unclip their car seat buckles, look-both-ways-for-moving-cars before crossing the parking lot, do the up-down walk on the curb to strengthen their hip flexors, count 1-8, alternating feet as they walk down the stairs and then play on-your-mark; get-set; go as we race-walk, all the while holding their little hands and 2 overstuffed backpacks on our way through the atrium and into the school’s vestibule. I sign in at 8:45 (their clock is 2 minutes fast!). I wait for the teacher or aide to come and fetch Brian. Since the boys’ surgery, she has to make a 2nd trip, coming back separately for Michael who needs his own good-bye time with Mommy and then, ultimately, I help deliver him reluctantly to his classroom and then race back down the hall, through the atrium and to the car lest he see me linger and change his mind about wanting to attend school today. I’m officially “done” with the required morning drop-off routine. It’s 9am. I’ve been up for 3 hours. No breaks yet!

I drive the ½ hour straight to BJs warehouse to stock up on food supplies and staples for the whole family. A solid 45 minutes literally jogging through the store, I pay, pack out the shopping cart into the car and drive the 15-minutes back home. It’s now 11am. I treat the dog’s eyes again, let both dogs out in the yard and unpack the car and groceries, stowing them into their respective cabinets, drawers, freezer and/or fridge. I take a 2-minute potty break with the door open so the dogs can come in and greet/eat/drink in good company. Mine. It’s my first "break" of the day. They’ve missed me so I pet them. Give them a treat. It’s 11:30am. I’ve been at it for 5 ½ hours so far. I grab a glass of water and take a vitamin.

I have maybe 2 ½ hours before I have to start the 2nd half of my commuting job to pick up the kids from school. I grab a couple of the 10-foot-long 1x4s I purchased to trim the windows in the great room and transfer them to the back steps. (They’ve been sitting in the middle of the living room since I purchased them – with all 3 kids in tow – last week at The Home Depot.) I search through the mess in the barn and drag the circular-saw, table-saw and hand-sander out of the barn and set them up on the back “deck” (if you could call it that). I retrieve the tape measure from the kitchen counter where all the tools we’ve used in the past month pile-up, patiently waiting their return to the tool boxes, shelf or floor of the barn. I find the sketch I drew of the windows and measurements buried beneath a pile of “Need Action” papers and the appointment calendar stacked on the kitchen table. I’m ready. I recall my Dad's warning, “measure twice, cut once” so I go back in and measure the windows a 2nd time. My first set of measurements are right on. Back outside, I cut the top piece for the first window. I lightly sand the flat surfaces and edges then test the piece by holding it above the window. If I’m lucky, it’ll fit. Digging through the 6 tool boxes/bags each containing an incomplete set of tools with no rhyme or reason for their placement, I find the stud finder my mother gave me a few years back. In the great room again, I locate the studs and carefully center and nail the first board in place. It’s 12:15pm. I treat the dog's eyes then, like the instructions on a shampoo bottle “rinse and repeat”, I start the process again. Wiping the sawdust away, I grab the next piece of wood. Measure. Cut. Nail. 1 ½ hours later, one window is framed. Not stained or painted yet – that may take another 2 years -- but at least it’s in place. I’ve got to clean up and leave for the after-school pick-up routine quickly.

If there’s time, I jump in the shower for 5 minutes. If not, I hate to admit this but I simply dab on additional deodorant, change out of my work clothes and into something vaguely more respectable, refill the juice cups, grab the bag of Tostitos and my cell phone (as per the reminder post-it note stuck by the front door) and sprint out to the car. I’m already probably, typically, 5-minutes later than I want to be/should be. I’ve got another Fiber 1 bar with me, if I’m lucky. Otherwise, I’m shoveling Tostitos into my mouth as I back out of the driveway. I’m driving again. This time of day there’s no traffic. And, though technically, I’m “working”, I put 104.3 classic rock on the radio and consider this my first real break of the day. 15-minutes into the ½ hour drive, I grab the hands-free blue tooth phone ear-jack, plug it in, turn down the music and call my Dad just in time to remind him to go and pick up Olivia from school. His memory is slipping so this is a daily procedure to ensure that, should I get stuck in traffic or the boys’ teacher doesn’t deliver them out to me right away, or the planets don’t align just right and I miss the 3:05pm pick up at her school, there’s another adult there to claim Olivia. If Grandpa doesn’t answer the phone, that sets in motion another course of action that includes contacting any one of several mothers in Olivia’s class who can let me know if Grandpa has arrived at the school yard, remembering her pick-up without prompting OR if he’s MIA. If the latter, I must quickly identify another of these spy-moms who might be available to hold Olivia for the extra 10 minutes – maybe on the playground, maybe at their house – until I arrive. If not, she’s in the office and will be emotionally upset with me at being “forgotten”. As if!!!!

I arrive at the boys’ school 10 minutes before the end of the day. If the teacher is feeling generous, she might let them forgo part of circle time and bring them out to me a bit early. Otherwise, I wait until the official dismissal time of 2:30pm. For the 2nd time in the day, I race against the clock and traffic. As quickly as possible, I gently coax the boys -- who’ve barely had time to be physically active all day but desperately want to be so -- through the atrium and into the car without letting on that we’re in a hurry. This is the ultimate test of a good and patient mother. Maybe we have the extra 2 minutes to ride the elevator down one floor to the sub-level where there’s a great echo chamber they love to test. Perhaps we can run back-and-forth with our friend Lucas for another minute before we have to count 1-8 back up the steps, do the up-down walk with the other leg to strengthen the opposite hip flexor from this morning and then climb into the car, review our buckle-up lessons, and set-up the juice and Tostitos snack for the ride home. If it’s pre-2:30pm, I have a fighting chance at arriving at Olivia’s school JUST in the nick of time for pick-up (as long as it’s not raining and there are no accidents on the 2 parkways I travel). And, if I’ve been a good mom and the angels are sympathetic, I might even get a reasonably close parking space near the entrance where her class let’s out. In record time, I release the boys from their car-seats and run to the pick-up door just in time to grab her before the teacher deposits all the unclaimed children in the main office. If I’m really lucky, Grandpa is there, -- which I have by now confirmed either with him or with another class mother – and none of this matters. In that case, when I arrive in the area, I pick up the happy pair – Grandpa and Olivia -- from the playground or on their walk home – a nature walk that always results in handfuls of rocks, sticks and 4-leaf-clovers (Olivia’s miraculously proficient – like my paternal grandmother – at finding these EVERY WHERE!). We are now 5 passengers full! It’s 3:15pm. 8 hours and 15 minutes since I dragged my weary bones out of bed. I’ve had a 2-minute potty-break and 5-minute shower break so far... not including the classic rock drive time.

We drop Grandpa back to his house, say our goodbye’s and thank-you’s, and make our way home. If the boys are sleeping – depending upon whether they actually slept, versus just rested, during school nap time – I leave them in the car and gingerly coax Olivia into the house for a 10-minute snack before the homework routine starts. This part kills me because, as it’s still early in the school year, I know the daylight and nice weather will be waning soon so I’d like to stay outside to play and garden with Olivia… always her preference. But, the good, conforming mother says, “Let’s get our homework out of the way”. Honestly, it doesn’t always work this way (for me or for her) but I always give it a shot! Homework, depending upon the day and mood, could take 20 minutes or 2 hours. If the boys aren’t sleeping, they share in the quick pre-homework snack. If they are, I sit by Olivia in the office – after cleaning and medicating/moisturizing the dog’s eyes -- while I blog and she [home]works. You might consider this yet another break in the day, but for the record, my blog is an effort to connect with other parents of children with Down syndrome. To share ideas, find solutions to the issues I face, connect with like-minded, like-living mothers. It’s about mothering and my kids. Not about me. OK, it's a little about me. It's a release and I love to write. But, eventually, hopefully, this blog will be linked to a DS-related e-commerce site -- one I hope will help other parents of children with Ds with developmental challenges -- that I plan to start and manage in my free time. LOL! Not that I don’t enjoy blogging and connecting with other Moms, I do. But it’s not just pleasure. I HAVE to do this... Besides, most of the time, I'm sitting beside Olivia coaxing her to continue working on her math problems.

She's done with her homework and I’ve checked it over and initialed it. It’s 5PM. Time for dinner. The boys are long up from their naps if that was their latest activity OR done watching their movie (meant as a distraction -- one I'm riddled with guilt over but have few alternative options -- while Olivia does her homework). Hubby should be rolling in shortly too. For the record, I don’t enjoy cooking. Especially since each of my children only eat and strongly prefer a different meal from each other. I throw a hamburger and a hot dog on the grill, a slice of pizza in the toaster oven, fill a plate with Tostitos, sprinkle it with cheese and pop it into the microwave…. The latter is the only common food choice they like. This covers the kids’ supper. There's often no veggies. Sure I try, sometimes. But, they don't eat them so why cook them? The Sarg is late with overtime and on his own for dinner, again. Besides, I just don’t want to do any more than I’ve already done. I pull the dinners out of their respective cooking locations, carefully dump them onto plates on the table, cut and dice and divvy up as needed, put in a new movie to distract the boys enough to get them to eat but not enough to distract Olivia from eating and TRY to get everyone to sit down at the table. It’s 6pm-ish! Later, if I haven’t been really diligent about staying on track. It’s bath night which has to begin no later than 7pm or I won’t have them all done and in bed by 8pm… ish! Me and Ajax or Scrubbing Bubbles clean the tub so that I’m comfortable they’re not going to be dirtier coming out of it than they were going in. Fill the tub, grab the diapers, pjs, bath toys and boys. First a potty-attempt (usually unsuccessful but I try every time, counting 1-10 x 2 boys) and then into the bath where the cleansing process begins. Wet hair. Dime-sized portion of shampoo. Lather. Rinse. Repeat. No, I don’t do it twice on one head…. I have twins. So I do it twice… once on each head. That’s the repeat part. “What’s next boys?” I ask. “BUBBLES!” “Are these the bubbles?” I ask holding up a white bottle? I ask again with the yellow soap bottle. And, again with the pink bottle. “NOOOOOO” they say until I hold up the purple bottle of bubbles. “Right!” We’re practicing colors again. Bubbles poured, wash-cloth in hand, I name each body part as I wash it, explaining to the boys which part it is, its function (which can get interesting) and why it’s important to keep it clean as I go along. Rinse and repeat. It’s 7:30pm. I grab a crossword puzzle I’ve previously ripped from the Pennysaver or newspaper while checking for fun upcoming Community Activities I can do with the kids on the weekends. I get my 3rd official “break” of the day... confined to the bathroom. As the boys play in the tub, I spend 10 minutes with the crossword puzzle. This may or may not be time enough to finish the puzzle but I hope it’s helping to keep my 46-years-old-and-aging brain from atrophying. By 7:45pm the boys are done. One more potty-attempt, then diaped and in pajamas. Hair combed against their will. You're right, it's probably 8pm. And, it’s Olivia’s turn… also against her will. The bath is emptied, the shower is adjusted to just-the-right-temperature and she’s in. “Call me when your hair is completely wet.” She never does. I check on her in 5 minutes. Wash her hair – lather, rinse, condition, rinse and clip it up – then instruct her to wash the rest of her self. I don’t go through the body parts any more with her… though sometimes I remind her of the importance of washing parts that get particularly dirty or stinky… like feet and armpits. I set out the towel and her pajamas beside the shower so she can reach and return to the kitchen to pack the day’s dishes into the dishwasher and brush the boys’ teeth. By the time I coax Olivia out of the shower she didn’t want to take, it’s 8:30pm. Or later. Sometimes much later. I take care of the dog’s eyes one last time. I transfer the wash to the dryer, load and start the washing machine and dryer, start the dish washer, shut off the television, the computer, all the lights, and grab a boy – usually Michael – for a ride upstairs while Daddy carries Brian up. I arrange everyone in their beds, kiss Olivia good night, float the sheet gently over her (because she loves this), choose and read 2 or 3 books or let the boys watch a movie (bad mama) until everyone passes out. It’s a cr*p-shoot as to who goes out first. Rarely it’s Olivia. Ocassionally it’s Brian or Michael. Sometimes it’s me. Mostly it's Daddy. It’s now between 9 and 10pm. I’ve been up and working nearly 16 hours. I’ve had MAYBE 20 minutes worth of breaks throughout the day. The night may or may not afford me unbroken sleep depending upon whether the boys have eaten something that unsettles their stomachs, been bitten by too many mosquitoes, have stuffy noses, are too hot, too cold or any other affliction that will wake them from their slumber… Then, I’m up again with them. Otherwise, I'm up to go to the bathroom. That's all the way downstairs.

Granted I don’t frame windows or shop at BJs Warehouse every day. Some days I clean the house, vacuum and mop the floors, clear the counters, sort through and donate out old toys, do the laundry, prepare for dinner, transfer seasonal clothes out of/into bins and dressers, garden and/or landscape, organize the tools in the barn for the 5th time, lay a brick-in-sand patio, mow the lawn, paint or spackle a wall, groom the dog, call/wait for the appliance repairman, take my father or the boys to one doctor or another, pay the bills or any number of other necessary activities. Once every 6 months or so I have the good fortune to have lunch with my mother or my aunt. And, once every few years, I have a dinner salad with a girlfriend. Sure, this job might be a little easier if my boys didn’t have special needs or if I didn’t care so much about the quality of my work or the outcome… I'm striving for a good finished product. But, as long as those things matter to me, this is the hardest job in the world. There is no rest for mothers. No built in breaks. No labor rules or regulations affording me time off. It is non-stop. Without breaks. Without pay. Recognition is pretty much nil and the rewards are not monetary… but they are GREAT… They are intrinsic rewards. I see my children growing up to be interesting, knowledgeable and responsible, caring and compassionate human beings. I see them living up to their fullest potential. I see them becoming good, honest and faithful people. This is the best job I’ve ever had. The most important job in the world. I wouldn’t trade it for any other job. No, it’s not for the weak-willed or weary or selfish or lazy. And, the Labor laws developed to help the overworked, underpaid and under-represented workers do not apply here.

As the summer closes and I prepare my young children for yet another year of school, it’s this labor of love that defines what motherhood -- and real labor -- means to me. This is what I will celebrate each Labor Day from now on.

Somehow, with just a little bit of reflection, some humor and a whole lot of typing, this inane holiday just took on a whole new meaning for me.

Friday, September 11, 2009

September 11, 2001


I'm not sure I can do this story justice. I'm not sure I can capture the essence of this day, 8 years ago. This photograph -- with New York City's skyline (no towers) gracing the horizon -- was taken recently from Long Island's Levy Preserve in Merrick. I live closer to NYC than this. And, I was working just one mile north of Ground Zero, in the heart of NYC, on September 11, 2001.

This day of remembering has come around 7 times since living through the terrorist attacks on the World Trade Center towers. Each time it does, my emotional response catches me by surprise. No, my life is not the same as it was before September 11, 2001. Dare I say that no American's life is the same before that fateful day. I'm sure my life is less changed than the lives of the family members of the 2,752 victims -- innocent people -- that lost theirs that day. I'm sure my life is less changed than those that were there at Ground Zero, running down the stairs of the 2nd tower as the first collapsed. "Survivors!" Less changed than the police officers and firemen that responded and lived to tell about it -- some for only a short time, ultimately dying painfully of exposure-inflicted illnesses. But, my life is significantly changed too. Significantly.

I was a corporate marketing technology executive working in lower mid-town Manhattan in a beautiful old NYC building across the park from the landmark Flat Iron Building on 23rd and Broadway. My office windows faced downtown. I loved the view of the gold domed clock tower on 14th street and the triangular Flat Iron building just outside my windows. I was 8 1/2 months pregnant on September 11, 2001, excitedly expecting my first child.

I'd woken up early as the result of a disturbing dream -- there was a huge forest fire and the animals had all climbed up into the trees to escape the spreading fire. They were screeching and screaming for help because they were now trapped in the tree tops with no way down. But, the fire and heat were too fierce and I could not help them. I could only watch and listen to their woeful screams as the fire engulfed them. I woke upset. On my daily commute into NYC -- which I shared with my sister -- I was retelling the nightmare during our usual fast-paced trek down and across town. As we made our right onto Broadway every one fell silent... a HUGE jet airplane flew overhead, engines roaring, as though it were about to set down right there in front of us. Using Broadway as its runway. I don't know if I ever realized that planes do not fly over Manhattan until that moment when I -- along with every other New Yorker on the street -- stopped and stared in disbelief. My sister said quietly, "that's going to hit something." In the few seconds it took to disappear from sight -- behind the myriad of tall buildings, the trademark of NYC -- everything and every one was frozen in time. Then, life in the Big Apple continued. We reached my building and I bid my sister goodbye. I showed my identification to building security and made my way up to our corporate offices. There in our lobby, a large crowd was gathered around each of several television monitors mounted throughout the waiting area. I listened. I saw. I heard. That plane -- the plane my sister and I had seen flying down Broadway -- had flown right into the World Trade Center. Some of my colleagues were speculating that it was a small sized plane and I corrected them, quickly asserting that we'd just seen that very jet plane fly down Broadway not 5 minutes earlier.

I wandered to my desk listening to people voicing more and more absurd theories. Among them, "a terrorist attack." I did not, would not, could not think it true. And then the second plane crashed into the second tower. A colleague postulated that the pilot must have accidentally veered into the second tower while watching the commotion in the first... as if flying a plane was like changing lanes in an automobile. No. That couldn't be it! What was happening? A terrorist act quickly becoming the only plausible answer. My mind went blank. BLANK. I could not think. What was going on and why? The monitors showed the lower Manhattan skyline shrouded in smoke, both towers ablaze.

I can see the two pillars of smoke rising up above the roof top of the building next to mine. I can smell the smoke. I can hear the sirens to the north of me, to the east of me, to the west of me and overwhelmingly to the south... all moving to the south. I am one short mile from Ground Zero. New York City, the city that never sleeps, is eerily silent except for the wail of sirens. I am overcome with a quiet sinking, sick sort of feeling in the pit of my stomach (it is there again even as I type this). A low grade anxiety. It's not the panic I know the people in the towers must be experiencing, en masse. No flight response kicks in here, a mile north. I cannot make sense of it. I know what I see, what I hear, what I smell. But, I don't understand. My mind is blank!

This goes on for I don't know how long. Too long. The televisions blare their hypothesis, finally settling on terrorist attacks. The Pentagon has been hit. Another plane is down in Pennsylvania. There are still other planes in the air unaccounted for. No one can say for sure whether any more planes are aimed at another NYC landmark. I am surrounded by NYC landmarks. But, oddly, I feel safe here... I am in my cocoon. Out there. Outside the windows, it is not safe. I KNOW this!

The President of my company is in town from Dallas. I am the senior executive running the NY office. He finds me. He looks more worried, more confused about what's going on than me. Maybe it's because I'm a New Yorker... as though this sort of thing happens every day. "Welcome to our fair city" I say, making light of the situation. Honestly, it's all we have to keep things together. No one is breaking down. People are doing. Moving. Making decisions. I give instructions to all of my employees to leave immediately... Get off the island of Manhattan as quickly as possible before anything else happens. Before every one else in NYC has the same idea. I'm sure I'm not the first. But, the work ethic here dictates that many will wait and see if this is real. To see if they can get something done before.... Before what? I don't know. Two of my employees are from "Jersey". One is 3 months pregnant. She's barely showing. I send them together, encouraging them to use the pregnancy as an excuse to get themselves on the ferry more quickly. "Push your stomach out, Kerrie, and get going." I later find out that worked. They were home quickly. Safely.

Time is passing slowly. It feels like I've barely just arrived. The phone is ringing. It's my sister who is adamant that I should not leave, not go anywhere without her. I explain that we're staying here. The head of our parent company has ordered in food for those few of us who have no where to go. No way to leave. The Long Island Rail Road has already shut down. And, at 8 1/2 months pregnant, I'm not prepared to head downtown towards the chaos to walk across the Brooklyn Bridge like thousands of others fleeing the city. It wouldn't be good for me, for the baby, to be jostled about in a large and panicked crowd. Not good to inhale the questionable air down town. I decide... we decide together, my sister and I... that we'll wait it out. Stay put for now. She walks back over to my office where she left me not long ago, so we can be together. Whatever happens, we're together. That's a good thing. Finally, we get in touch with family members, but just barely before all the phone lines go dead. The cell phones are mostly not working -- too much network traffic, people trying to reach their loved ones -- but my phone connects and I'm able to assure my husband and another of my sisters that we are ok. We are together and safe! Safe? Who knows, for sure?

Initially we mingled with my coworkers but the mood and comments were... weird... uncomfortable. So my sister, my boss and I, took to a private conference room, south facing so we could watch. Watch the smoke rise from the damaged towers. And we knew, we could tell, when the first tower collapsed, by the sudden mushroom cloud of billowing smoke. Then the second. This was real life happening right before our very eyes. Not at all like watching it on television.

The day dragged on -- the smoke rose up into the sky, the news reports continued, I tried to do some work to no avail -- until it was nearly 5:00 pm when things seemed to have... not calmed down exactly. There was no lull. Or, maybe that's all it was all day... a lull. Nothing had returned to "normal". It never would. It just seemed like the right time to go. I guess it felt as close to normal as it could. Nearly the time we would have left work... before 9/11. Before the terrorist attacks on the Twin Towers. We heard that the LIRR was running hourly trains again to help straggling commuters get out. Perhaps that was why we ventured out finally.

The people of New York City were gone... No one! Except for my sister and I. And, one lone photographer, his back to us, kneeling in the middle of Broadway where just hours before a jet plane roared too closely overhead. He had a huge lens on his camera and was shooting straight down the street into lower Manhattan where the building tops were clouded in thick grey smoke. Down a street that would have "normally" been congested with cars, buses, taxi cabs and people. People all over the place. But not today. Not September 11, 2001.

We walked -- like the Simon & Garfunkel song says -- amidst the sounds of silence in an otherwise noisy city. (Apropos lyrics.) We kept our New York City pace though there was no real reason for it. Maybe again, shooting for something close to "normal". In Penn Station, there were almost no people, very few riders. A handful, maybe. Most every one had run for their lives earlier in the day. I honestly do not remember the train ride home. Uneventful, I guess, which is a strange way to describe any part of that day. It was wholly the most eventful day of my life!

When I got home, I shed my first tears. Quietly... amidst the sounds of silence. I have shed many since remembering this day over the past 8 years. Remembering and crying... always quietly.
It was fortunate that the wind blew from North to South that day 8 years ago. I guess that's why we never actually HEARD the plane hit the Tower. The noise traveled south with the wind. The same way the smoke travelled. I had two cousins working in the Towers that day. Both survived. One, already late for a meeting, walked into the lobby but at the last minute decided to go back out for coffee. All of her colleagues perished. The other descended the fiery stairwell with hundreds of others. He survived the day and then moved away from New York. It was the second time he'd survived an attack on the Towers... He was there for the '93 bombing and after September 11, 2001, he decided not to tempt fate again. He now resides happily in Connecticut. He ventures no where near the big city or important landmark buildings that could be targeted by senseless acts of terrorism.

By Friday I was back to work. We all were. Just 3 days after the attacks acting as if... as if things were back to normal. 42 days after that fateful day, I gave birth to a healthy baby girl. We named her Olivia... after the olive branch representing peace. We thought it appropriate. She is my peace. An old soul. I worked in NYC another year before I left to be a stay-at-home-Mom. I also have identical twin boys now who happen to have been blessed with an extra 21st chromosome (aka Down syndrome). They fill my days with love and laughter. I am truly blessed. I laugh and smile all day long, every day... Except for this day each year, as vivid memories come flooding back. The forest animals are screaming -- the sirens are wailing -- and I cannot help them. Each year, they perish again.
I still live a mere 25 miles outside of the Midtown Tunnel. I love New York City and visit it frequently. I assume that when I return to the work force after my stint as a stay-at-home-mom that I will do so in the greatest city in the world. New York! Mostly, I feel safe there. And, safe here (living so close). But, there is an underlying sense of unease that it could happen again. That I might not be so lucky next time. It's sort of always there with me, in the pit of my stomach. I guess that's why my cousin left.

So, what has changed? Me! My world! My thoughts about what's possible. I cannot look at a plane flying overhead without remembering that plane. I cannot look at the beautiful Manhattan skyline without seeing what is no longer there. My heart is full of respect for all New Yorkers. For the NYPD, FDNY, Mayor Giuliani, my supervisors and colleagues, fellow commuters, and City-dwellers who all calmly held down the fort while we were under attack. Who all did what had to be done. Helping eachother get through the worst day in the history of New York. My husband joined NYPD after the September 11th attacks in New York City. He knew full well what he was getting into when he took his oath. He knew what the worst case scenario could be and accepted the responsibility. We are all New Yorkers. We are tough. We can survive absolutely anything... can't we? Surely, we have proven that!

As a people, we are forever changed. We will never forget! I will never forget a single moment of that day... Like it was yesterday. Not a single second that passed as my new baby kicked inside me. Every breath I took, every emotion that seared my heart, every blink of my eye... Because I know things can change that quickly. In our post-9/11 world, I recognize this and take nothing for granted. I am thankful for what I have. That I and all my loved ones survived. I'm sorry, devastatingly sorry, for all those who lost so much that day.

We all lost something that day! We lost what it feels like to be safe. To see a plane as just a plane... not a potential weapon. A building as just a building... not a potential target. A person as just a person not a potential terrorist -- someone who would hijack a plane and kill thousands of innocent people. Or a potential victim -- a name on a wall to be called out by their loved ones years later. To be remembered as part of one of the worst days in American history. No, I will never forget. And, yes, I am changed! Significantly changed.

Thursday, September 10, 2009

Angels Amongst Us -- New Shoes AND A New Teacher!

Yesterday was the boy's first day back to school. I'd like to say it's been a long and enjoyable summer but, in truth, I had only a measly 3 weeks with the boys out of school. And, while I enjoyed and made the best of that time, the restart was a little... premature... unwelcome??? For me anyway. But, for the boys, it was still appropriately exciting. They were thrilled that they were going to see their teachers and friends again...

"Toni!!!"

Uh oh. That was last year's teacher. "No No Brian. You'll be able to say hello to Toni. But, this year your teacher is going to be Sharon. SHHHH... AAAAH.... RON!"

"Noooooooo, TONI!"

Prepared for an upset, we arrived at the school amidst their excited rant about seeing Toni as well as Jolly and Jene, their classroom aides, and Ala, their friend and former classmate... FROM LAST YEAR (which ended all of 3 weeks ago). Out of the car, down the steps, through the atrium to the NEW door on the right (not our old door on the left... FROM LAST YEAR) all to the backdrop hum of "Toni, Toni, Toni!"

I noticed Steve Hernandez, the Education Director, meandering through the atrium welcoming students and parents back, impeccably dressed with a super-cool-for-kids necktie, as always. As he approached, I reminded the boys to say hello. They gladly obliged in a Blues Clues sort of way.... "HI STEEEEEEEEVE!" Steve immediately reached down to greet them with his usual high-fives and hand shakes after which Brian excitedly pointed to his feet and announced, "NEW SHOES". Now, my boys are aware that their articulation is less than understandable most of the time. So, for that split second, the 3 of us held our breaths waiting to see if Steve understood. With a great big, high-pitched voice, Steve responded with utter excitement, "Oh COOOL! ME TOO!" and pointed down at his own brand new, dress-up shoes.

That moment -- their moment! -- was AWESOME! Brian recognized instantly that Steve understood him. And I KNEW instantly that it was going to be a great year for my boys.

Brian and Michael marched purposefully -- triumphantly understood -- down the hall to where their new teacher -- not Toni -- stood waiting at the open door of a huge and wonderfully well-stocked classroom. By way of introduction I said to the boys, "This is your new teacher, Ssshhh-aah-ron." As she knelt down to say hello, unprompted, both boys gave her a big and simultaneous hug -- it may have been a ploy to get a peak over her shoulder at the various toys and children scattered about the room behind her -- and then both said, "Hi Aaaah-Ron" before they ran in to play cooperatively with their new classmates.

Funny... they both skipped the "Shhh" part of her name (a sound they know and can produce).... I hope that's not foreshadowing! LOL.

This is dedicated Steve, Sharon, Toni, Jolly, Jene and all those who dedicate their lives to educating children with special needs. God bless them for their patience and for their loving attention to my boys.

Wednesday, September 9, 2009

Special Exposure Wednesday - First Day of School


After dropping "Ala" to school on the first day... (hers, not ours)
We were lone children playing on an empty playground!

Very surreal!

Saturday, September 5, 2009

Real-Life Identical Twin Genetics Lesson

My boys attract a lot of attention being identical twins. As a matter of fact, that is definitely the factor that draws most people's attention. Then, the Down syndrome seals the deal. They are, as the old soul puts it, "too cute to measure!"




Every once in awhile a stranger will ask if I'm SURE they're identical twins because she/he can tell the difference in their physical appearances. [Yeah, the MDs and genetic testing must be wrong and you're right. LOL] I also get asked if the boys act exactly the same being identical twins. Do they do everything together? Like all the same things? I guess that assumption speaks to the belief that personality is genetically determined such that identical twins would have genetically identical personalities. This is SOOOO not the way it is. My boys couldn't be more different from each other despite looking very much alike. Though modern psychology posits that some aspects of personality may be at least partially predisposed (i.e. optimism vs. pessimism) no one is entirely sure how much of one's personality is determined by genetics versus environmental factors/life experience. It is widely accepted that what happens to a person in life and how they handle it may alter the predisposition and outcome.



Having identical twins, we found there are many things that are predisposed but environmentally impacted as well. So, here's a couple of really cool examples of genetic preprogramming affected by environmental factors:



[1] Both of my boys have Down syndrome. The duplication error that was present in the original egg cell was duplicated in both eggs when it split. I often ponder the science of this and the fact that the duplication error was programmed into that specific egg cell and duplicated in each of my identical twins. This means that the notion that Down syndrome is merely a mistake that happens during the process of copying the 21st chromosome is a scientifically inept description. Whatever causes the duplication error is already programmed into the egg cell before any splitting or duplicating occurs. Otherwise, it would be possible to have identical twins where one has DS and the other does not... To my knowledge, this has never happened. The triplication of the 21st chromosome is not an accident that happens at the time it's being copied but rather an altercation in the preprogramming built into the original egg cell. But, the result, the outcome, the prognosis varies from one child with DS to another based on environmental factors. Identical twins with Down syndrome make this a fascinating topic to ponder. My guys happen to be pretty much on par with each other. Throughout the Early Intervention process, the boys received a multitude of evaluations in speech, PT, OT and Special Education. Eerily, they almost always received the same scores on their evaluations... and if not the same then just decimal points apart. Even the therapists were baffled by this. They consistently achieved the same scores but always in different ways. Michael could sit up while Brian could pull to stand but couldn't hold the sitting position. Brian could jump but Michael could throw the ball. Brian knew his colors while Michael could match. Brian could copy a circle, Michael a line. Over and over again, they achieved the same scores not because they could do all the same things but they could do different things that totalled the same number of points on their evaluations. They are preprogrammed to have Down syndrome. They are very much on par with how this affects them in so many ways. But, what and how they learn, the skills they master and when is absolutely unique to each boy. Very weird!



[2] Children with Down syndrome grow teeth willy nilly. The order and timing has no discernible pattern from one child with DS to another... EXCEPT in identical twins with Down syndrome. Every time a new tooth erupted, it did so first in Michael's mouth before Brian's. But their teeth did erupt in exactly the same order just not at the same time. That's because Michael habitually chews things. He's chewed the tops right off of every sippy cup straw we own (much to Brian's chagrin). And, he's a fearsome meat eater. If you ask Mikey what he wants for breakfast, he'll tell you a hamburger. Brian will always choose pizza. The more you chew and the harder the object you're chewing, the sooner you wear away the gums covering the slow growing teeth underneath. Soooo, Michael's teeth came out earlier than Brian's by anywhere from a few weeks to a couple of months. Michael's recently filled in a couple of gaps but we're still waiting for Brian's teeth to follow his genetically identical pattern. Very interesting to watch in identical twins.



[3] When we meet new people, inevitably they try to determine one distinguishing factor that will allow them to accurately identify which one is Michael and which is Brian. Aside from the color of their shirts or a temporary boo boo on the side of one's face, there are a few features that vaguely differentiate them from each other. These, of course, are much easier to detect when you have both boys standing face-forward in front of you (not always possible) so it's not always a help. It so happens that Michael's face is thinner than Brian's and Brian's face is wider than Michael's. This is because Brian's head is wider side-to-side and Michael's is wider front-to-back though the circumference of their heads are exactly the same. You see, the boys were born 8 weeks premature. That means their heads were VERY soft upon their births. Michael spent 6 weeks in the NICU (battling a C-dificil and NEC infection) where he was rotated from back to front and one side to the other like a rotisserie chicken. Given he was hard-wired and attached to monitors to ensure safe and sound sleep, they kept his head very well rounded. On the other hand, Brian was sent home after only 2 weeks in the NICU. And, given the "Back to Sleep" campaign which has caused a 50% drop in the incidence of Sudden Infant Death Syndrome (SIDS), mostly Brian slept on his back. I did wedge him on his sides nearly every night to round out his head like his hospitalized brother's, but he wiggled his way out of the wedges and found comfort flat on his back. Key word "flat". His head, that is! Not desperately so but enough to make the shapes of their heads slightly different which also alters the appearance of their eyes ever so slightly. So, that's partly how we tell them apart. That and the extra 3 lbs Brian carries around... also environmental!



[4] And, finally, I came across a new example of genetic preprogramming influenced by environmental factors just last night as I was bathing the boys and looking, as I always do, for new marks and freckles on their fair skin. When the boys were born, we did not know whether we were having identical or fraternal twins as they were in separate amniotic sacs. We thought, wrongly, that they were fraternal. As it turns out, 2% of all identical twins develop in separate sacs because the egg splits up in the fallopian tube in the first 48 hours of pregnancy and the two babies travel to the uterus, attach and grow independent of one another in the womb. One of the things that made the NICU nurses pretty sure they were identical twins when they were born was that neither of them had a single mark, freckle or spot anywhere on their bodies. This, apparently, is a rarity as well. It seems most everyone is born with some small birthmark of some sort or another. But, Brian's and Michael's bodies were both blank slates. Of course, just living their lives has since left evidence of their experiences on their beautiful skin in the form of scars and freckles. So, Michael has this one little freckle on the right side of his upper back (his wing, as Grandma would call it) for maybe a year now. Brian does not. Or, I should say, did not... until I noticed the smallest little freckle just starting to appear in exactly the same spot that Michael has his!!!!



Think about it. Genetically, their skin is built the same as each other's but the amount of sun each boy gets is slightly different. Freckles are caused by sun exposure. The boys spend most of their days in close proximity to one another and wearing approximately but NEVER the same clothes... And, last time I checked, the clothes they wear -- except for their bathing suit tops -- are not UV protected. How much sun one boy gets over the other is variable... ever so slightly variable. Who's in the shade? Who's back is to the sun? Who's wearing a white shirt versus a blue shirt? (Neither ever goes shirtless outside of our home.) They've been exposed to ever so slightly different environmental factors. It took more than a year, but that very same freckle, once exposed to it's quota of sunlight appeared on Brian just the way it had, much earlier, on Michael. Even their freckles are genetically programmed if the environmental stars align just right. How cool is that???



My hubby and I think this is all SOOOO cool! The whole identical twin thing is fascinating to watch up close and personal! So, for those people who meet the boys, agree they look alike and ask "how do you tell them apart?"... We sometimes tell them apart by the shape of their faces which goes along with their slight difference in size. Though they have always measured within 1/4" height of each other, Brian consistently weighs 2-3 lbs more than Michael. Brian=Bigger is easy to remember. (But, DON'T ever say that to or in front of them lest we affect Brian's self-esteem and make him think he's fat when he's not or Michael's self-esteem making him think he's too skinny, when he's not!) Or, we may tell them apart on any given day by who's missing what teeth or who's got a visible scar or beauty mark where. But, mostly, we tell them apart by who they are and how they act... by their personalities... because, while these other differences I've mentioned are ever so subtle -- Brian and Michael are vastly different from each other in personality.... despite being genetically identical twins.