Sunday, September 30, 2012

In The News - September 2012

Every month I compile a list of the stories I post on Down Wit Dat's Facebook page. They are stories of inclusion, of advocacy, of education, of hope and of love.  These are from the month of September.

AUDIOindicates an audio clip
APPEAL indicates an online petition or plea
BLOG indicates a blog post
EVENT indicates a scheduled event
LINKS indicates links or resource materials
PHOTOS indicates photos
STUDY indicates a study
THREAD indicates an online discussion thread
VIDEO indicates a video

Against The Odds, A 'Miracle Boy Grows Up'
Pakistan 'Koran plot' imam remanded in blasphemy case
LINKSLatest News

President Zardari: Save my daughter!
LINKS Explaining Down Syndrome to Children
Family: Boy With Down Syndrome Kicked off Flight

Blood test for Down's 'could avert 300 miscarriages a year'
BLOG A Sister Stands with Her Brother: I Am Heard, I Am Important, and I Am Included

The Changing World of Augmentative and Alternative Communication (AAC)
EVENTMaking Connections – Film Screening. Untapping emerging talent from Toronto’s special needs community
BLOG What’s The Difference
An open letter from a pissed dad
Young girl with Down Syndrome, wrongly accused of horrible crime released
“Picky Eaters” Will Not Starve Themselves But Problem or Resistant Eaters Might
Feeding Milestones for Children

Man with Down’s syndrome sues over DNR order

A Mosquito in the Room

Sue’s Infant Daughter Is Just Like "Any Other Baby": How Glee Succeeds in Its Portrayal of Down Syndrome — Exclusive

Disabled Vulnerable to Violence
Welcome to the Table

Recess Skills for Children with Special Needs
I'm Down with You, An Inspired Journey
A Special Needs Parents Response to "I don't know how you do it"

Beyond picky eating: avoidant/restrictive food intake disorder.

FDA links SimplyThick to infant deaths, warns parents not to use

Down Wit Dat has been nominated for Circle of Moms' Top 25 Canadian MomsEveryone, everywhere can vote once a day, every day until October 11th. 

I am participating in the 31 for 21 Blogging Challenge again this year.  I will be blogging every day for the month of October to educate and raise awareness of Down syndrome.  Please share and get the word out.

We had our seventh T-21 Blog Hop on September 21. Join us for three days of excellent blogging on October 21! 

Our Facebook page now has over 820 fans. Welcome to all our new friends. 

Don't forget our Facebook Group!  Down Wit Dat - The Group is an all inclusive special needs discussion forum.  Join the conversation!

I'm looking forward to judging September's Photo Theme "Back to School" Results to be posted tomorrow on Down Wit Dat's Facebook page. October's Theme to be announced at the same time.

...And that's the news.  Keep the stories and information coming!

Thursday, September 27, 2012

Down Wit Dat Nominated for Top 25 Canadian Moms!

We interrupt this blog to bring you the latest news:

Down Wit Dat has been nominated for Circle of Mom's Top 25 Canadian Moms category!  This is super exciting... although we have a global following, we are relatively unknown in our own country.

As well, this is an open category, so it would be fantastic to score one for inclusion!

What you can do:

On the right hand side, you will see this logo:

[Circle of Moms Top 25 Canadian Moms - 2012 - Vote for me!]
Click it once and find Down Wit Dat in the rankings (look for our distinctive blue DwD square dragonflies logo).

Down Wit Dat
Look for this logo!

Then, to the right, click the thumbs up "vote" circle.

That's it!

You can do this once a day, every day until October 11th!

We also have the voting link posted to our Facebook Page and in our Facebook Group.  Vote early, vote often.  Let's show Circle of Moms and Canada what we are made of! 

Thanks so much.  For the nomination and your continued support.


[We now return you to your regularly scheduled blog]

Monday, September 24, 2012

Pull Down Your Pants and Slide on the Ice

I have spent the last few weeks feeling like I have a head full of bees.

It's not a pleasant feeling, this anxiety/anger/annoyance/exhaustion mix.  It's not easy dragging my ass out of bed in the morning/evening/whenever I have to get up, either.  However, I, like every other shift worker with kids, do it.  I nap when I can to try and take the edge off.

Why all the bees?  Nothing and everything, I would suppose.  Work is stupid busy and very stressful as there are some major changes coming down the pipe.  These will be good for me, make no mistake, but as the saying goes, change is always hard.  There are many happenings on the home front as well.  Quinn is getting adjusted to his new schedule, Wyatt and Zoe are teething and growing and doing all the things they are supposed to be doing... except sleeping.  As a family we are trying to get a rhythm going again with my schedule in relation to everyone else.  It's tricky. Throw in doctors appointments and my new hobby of restorative dentistry and it's good luck trying to find time to meet up with anyone for coffee or a phone call that isn't between 2 and 5 am.  We also have some construction efforts happening, including our ongoing fence saga (don't ask!) and an overhaul of our electrical panel coming up in the next week or so.  With all the cash flowing out the door, I'm trying to pick up overtime where I can. Busy, busy. Buzz, buzz, buzz.

I'm not kidding about the dentist either.  I have appointments lined up from now until next Christmas.  One of the grosser parts about being pregnant with twins was how sick I was.  I threw up several times a day for 4 or so months.  Then it decreased to once a day or so for the rest of the pregnancy.  The constant infusion of Coca Cola (once I figured out I could drink it again) after the babies were born did not help either.  Essentially, I now have the teeth of a bulimic, at least on the top.  It's a little embarrassing and a whole lot upsetting, actually, since I used to have a nice smile.  It will be again, it will just take a lot of work.  I have a fabulous dentist, a great endodentist and a periodentist that will all take a crack fixing things.  At some point, when I feel like smiling again, it will be beautiful.

Yesterday things hit critical mass for me.  As I am going to be doing the 31 for 21 again this year, I thought I'd be proactive and at least do a little of the legwork first.  Not to wreck any surprises, but I started researching again for another installment (or two) of my increasingly inaccurately named "A Brief History of Down syndrome".  Not to ruin anything further, but it is a topic that I have been considering for some time (since the last installment, actually) and this one in particular is a difficult one for me to write.  Through Friday night and Saturday, all the while struggling with dates and reading reams of historical accounts to make sure my quotes were accurate, the words started to flow.  As of lunchtime Sunday, I'd say I had over half the article done, annotated and linked appropriately.  You'll notice I said had, as with a few key strokes, the whole thing went away.

I have no idea what happened.  Blogger has changed it's format and it should have been auto saving, yet for a very long time, it obviously had been not.   I was left with a quote, my intro paragraph and half a timeline.  Insert Rage Comic guy here.

I don't have any place in this house that I can consider my own.  I share everything with at least one other person and now that I am no longer in charge of running this household, none of it feels like mine.  I have been joking for a couple of days with a few friends that if things did not improve, I was going to build a fort in my closet and just hole up in there with my laptop and write.  Comfy cushions, a glass of wine, some fatty snax, maybe even some brie, definitely a password... the list grew and grew as we riffed on my building anxiety.  It's sad in a way, that my idea of heaven now is a quiet corner where I can relax, be creative and eat and drink something that someone else isn't trying to at the same time.   As kooky as this sounds (and trust me, as a mental health professional, I KNOW how it sounds), after I lost my article, I did just that.

I went into my closet and built a fort.

Ok, as far as forts go, it was not all that awesome, but it was my fort.  The babies were down for a nap, Sean and Quinn had gone to the grocery store to get a few things and I sat down in front of my laptop, on a pile of pillows, with a small bottle of wine (which remained unopened, oddly enough).  I had just eaten lunch, so no fatty snax were required, however I did have a plan to fortify my reserves later if it came down to it.  Surrounded by shoes that no longer fit and clothes hanging on three sides, I was ready to rewrite what had been lost.

I had nuthin'.

I remember vaguely the order of the information, the info itself, how it looked, where the pictures went, but I was just too angry and exhausted.  I stared at Mr. Blinky (the cursor) for what seemed like forever and gave up.  I curled up and had a nap.  I napped on the floor of my closet, in front of my laptop.

A short time later, Zoe awoke screaming.  I'm not sure if she had a nightmare or what, but in the few seconds it took me to get there, she had stood up and was shaking, her eyes wide with fear.  Wyatt managed to not wake up (he is used to his loud sister), but I scooped her, her tookie (soother) and her bunny up and snuggled with her on the futon.  She fell asleep on my chest a few minutes later, but my efforts to put her back into her crib failed miserably.  Everything was going quite well until she rolled over and smacked her knee on the edge of the crib and awoke howling once more. 

I carried her into our room and we snuggled under the comforter.  She was restless at first, but did eventually go to sleep.  I was wide awake at this point and just lay there, watching my daughter sleep.  Occasionally I would brush a stray hair from her face or smooth down her damp curls.   What I am going to say next is going to sound trite to many people, but I think a few of you will understand.  Looking into her precious tiny face, it all made sense.  All of it.  As I listened to her slightly snotty breathing, the bees went away and left in their wake a state of calm.  I don't know what it says about me, about my kids or what, but they always have the ability to make me focus.  I quietly slipped out from under the covers as to not disturb her and sat down at the laptop to write.  I was only there a few minutes when I heard her chatter-y call out "Adada deeba dada?"  I leaned forward a bit so that she could see me and after "Aaaahaaaaa!" she carefully climbed down and toddled over to where I was sitting.  Her hair was all tousled and she dragged her bunny with her and I had to let her in the fort, password or not.  She looked around a bit, chattering all the while as she took in her rather unusual surroundings.  Finally, she plunked herself down on my lap and I loaded up some Sesame street videos to pass the time before Wyatt woke up.

We sat in my fort, she and I... and watched Feist sing about counting to four and Adam Sandler sing about Elmo.   As much as I hate the little red bugger, Zoe and I bopped along to Adam and his guitar.  It was halfway during that video that she smiled and looked up at me with complete delight.  She grabbed my hands and we clapped along and somewhere in there I knew the bees were gone for good... or at least until the next major crisis.  It's that look of wonderment, that simple contentment that the kids have.  You show them something small and they wring every last bit of happy out of it.  Simple pleasures, simple things... my coping had failed temporarily and these things had eluded me.  A little bit of beauty, of calm, of relaxation, of sleep, quiet and wonderment and suddenly all the things that had been plaguing me for weeks were gone.  We giggled and I sang along to the songs until the spell was broken somewhere around the sixth video when we heard Wyatt call out and Zoe toddled off to find her brother.

I came back into my 'fort' one more time, just to write this.  I needed to sit in the space to recapture exactly what it was I was feeling, what I was experiencing.  During the course of my writing this passage, I've stopped a few times and looked around.  Yes, this isn't a place that I would want to spend all my time, that is for sure.  However, it is big enough, it already has a desk in it and it would suffice as an impromptu office now and again if need be.  For now however, I picked up the blankets and the pillows and the still unopened wine and went downstairs for dinner with my crazy noisy family.

I wouldn't recommend hiding in your closet, literally or figuratively, to anyone.  However, I am of the mind that we all need a little corner for ourselves, in which to be ourselves, whatever or whoever that is.  Call it an office, a den, a 'man cave', a boudoir... even a fort if need be. Just make it of you, for you.  No matter how strong or full of coping skills we think we are, we aren't.  I always tell my patients that everyone is one major life event away from being in their shoes.  They all agree.  They all thought they could keep it together too.

It's not a contest, but I acknowledge freely that I have a lot on my plate.  I may have completely lost it, but I don't think so.  One afternoon of fort building was enough silliness to last me for a while.  The ancients believed in fighting evil with evil;  I believe in fighting insanity with more insanity sometimes.  To quote Major Sidney Freedman from M*A*S*H; "Ladies and gentleman, take my advice.  Pull down your pants and slide on the ice."  Essentially, life is too short and you have to have a little fun sometimes.  Building a fort and watching Sesame Street with my daughter may not keep the bees away for good but it certainly smoked them out and calmed them down a bit.  

And that is that... in a nut-shellmo.  :)

Sunday, September 16, 2012

Silent Sunday: We are Family

Well, Hello There...

My Mouf Hurts

En Pointe
This Pretty Much Sums Up My Kids...
Brotherly Love
Almost a family Portrait... Almost

I has a chair!

Now I has the chair.

Nope.  Chair is mine.
I love this one...
Join Down Wit Dat on the 21st of Every Month!

Monday, September 10, 2012

The War on Time and Stuff

I've said this before and I will say it again:  Time is not my friend.  I look back at my life BK (Before Kids) and laugh my tired butt off as I thought I was so busy then.  (Gimme a break!)  I wish I could go back in time some days and smack some sense into the 'then' me... Come to think of it, I can think of a few more people in history I'd like to smack some sense into as well.  Upon further reflection it is probably for the best that I don't have access to this kind of technology, because you can be assured I would probably unravel all of space-time with my sense-smacking pursuits. Anyway, I digress...  It's probably the coffee; caffeine being the only thing keeping me going most days.  I get more done, but I have the attention span of a gnat.  I also have to be careful as some mornings are a crap shoot whether that second cup will provide me with the energy I need or simply bring on a cardiac event. 

Lately, most of my spare (ha!) time has been spent on reorganizing this crazy house.  Instead of saying things like "Ooh!  That IKEA shelving unit would solve a lot of problems around here" and then promptly losing the catalogue after the kids have shredded it, I've actually gone to IKEA and purchased the aforementioned shelves and the matching doors.   And a whole bunch of other stuff.  And their matching doors.  I've spent a ridiculous amount of money, but I've managed to reclaim my living room (hooray!) and we are working on the other areas of the house.  It's a fair trade. 

The clothes are a major portion of this mess that I live in.  I also make no secret of the fact that laundry is the bane of my existence.  My father-in-law, bless his heart, was completely flabbergasted by the laundry when he was down to help out after the babies were born.  Rightfully so too, as my laundry practices are bizarre by most standards, yet completely necessary by mine.  The babies clothes are washed together, using baby detergent and stain remover and no fabric softener.  Makes sense.  Everyone else, however, has their stuff washed separately as well.  My clothes, which may or may not be contaminated by hospital germs are washed using whatever detergent is handy and my fabric softener (one of my few luxuries).  Quinn's clothes get random detergent, stain remover and whatever cheap fabric softener is going.  Finally, Sean's are washed using one of two detergents that don't make him want claw his own flesh off and no fabric softener (for the same reason).   See, I can hear you cringing from here and I haven't even gotten to the towels and the linen yet.  It's complicated.  There are many sorting bins and the sheer volume will stagger you.  What it does create is a house where there is no digging through a basket of clean laundry trying to find the mate to one of your socks and only coming up with his underwear, some towels and a bunch of the kids clothes, because, let's face it, no one needs that at 4:30 in the morning.  This is my laundry basket, this is yours.  There is complete laundry separation in this house, yet it still manages to be EVERYWHERE.  For what it is worth, I do at least two loads a day to try and stay caught up.
When I'm not sorting, washing and folding laundry, I'm sorting through the kids clothes.  In the last three weeks, we have hit a landmark;  all three kids have suddenly grown out of the sizes that they were wearing.  I'm not sure if it is what I'm feeding them or if it's the fresh air that they got this summer, but WHAM!, they seemed to grow out of everything overnight.  This has meant a changeover of all the kids clothes and doubled their laundry as I try and get all the clothes clean to sort out.  I have been blessed with wonderful friends who rallied for the cause and made sure that I had enough clothes for the twins.  I have a motley collection of different sized bags and bins squirreled away under the stairs that are full of clothes;  they are sorted by sex and size, all of which is written neatly on the outside.    I've always got the twins' next size laid out and ready to go in their closet organizer, which means once I clear out the outgrown things and move the current size over, I get the size after that ready as well. I'm sure that sounds crazy too, but there is nothing like being caught short in the middle of the night, cleaning up god-only-knows-what and finding out that there are no clean jammies left.  Or, running late for an appointment, frantically dressing the little people to get them out the door, only to find out that there are no more pants (or gender neutral ones that we can borrow from the other).  Both have happened.  Both were not fun.  Quinn's clothes will be kept for Wyatt, but the outgrown babies' clothes are being sorted out again for disbursement. There is a boy bag, a girl bag and a neutral bag that are earmarked for babies that are on the way.  When I say 'bag', of course, I mean bags, but that is beside the point.  There is also a pile for donation;  there is a family shelter not too far from me that we refer to at the hospital and they are always on the lookout for maternity and baby clothes.  For the first time since they were in 0-3 months, Wyatt and Zoe are the same size again... which makes it easy as I always have a stash of plain onesies in the living room for accidents (read:  creation of more laundry).  Did I mention that I'm sick of looking at clothes?  I'm sick of looking at clothes. 

Don't get me wrong, I am extremely thankful for being in a position to afford clothes for my kids and to have friends that helped me out.  I just think that, for someone that a) does not work in fashion/retail and b) cares so little about dressing herself, I spend a lot of time thinking about or dealing with clothing.  It comes up in other areas too.  This summer, we sent Quinn to a local day camp for three weeks (only two were consecutive).  He loved it, but every day was pretty much like spinning the Wheel of Random Misplacement.

The very first day, he lost his swim trunks and UV shirt.  We replaced them that night, but pointed out to him that this was the last time we were going to do this sort of thing.  He managed to get through the rest of that week with only losing the freezie lid off one of his sandwich containers.  The next week we managed to scrape by with only replacing his running shoes (due to wear and tear, thankfully).  The last week, however, was a Wheel of Random Misplacement Spin-Free-for-all! (Probably to make up for lost time.)  The first day, nothing happened.  On the second day, he lost his swimsuit again and his towel for good measure.  We made him wear an old swimsuit the next day and Sean went to the camp and rooted through the wet, stinky, mouldy lost and found.  He located Quinn's trunks and towel... but no shirt (and no sign of the first set that he had lost either).  All was almost well, except for that day's spin when *whizzzzz!*... Quinn came home without his lunch bag. 

Now, by this point, we had the camp phone number on speed dial and managed to get one of the teenagers that work there to put it in his leader's locker for the next day.  Since it was now Thursday, we thought, 'ok, we might just make it out' until *whizzzzz!* We actually hit the jackpot!  Sure, he came home with his lost lunchbag, the lunchbag he was sent in the meantime and his swim trunks and towel.  However, his jeans were actually on inside out and backwards, he had lost his hat and was wearing a totally different shirt than the one we had sent him in.  To be fair, it was the same shade of red as the one he had worn in the a.m.  However, he had worn a plain Cherokee shirt and came home in an Osh Kosh Tee emblazoned with a maple leaf and CANADA in giant block letters across the front.  I have to give the kid 10 out of 10 for style, patriotism and brand/quality upgrading, but minus a bunch for common sense and actually going down a size, yeah? We dug out an old hat for the boy and the gods smiled on us the last day as he only came home with a sunburn, having forgotten to apply sunscreen after the pool.  The Osh Kosh shirt is really nice, actually.  It washed up really well and I put it away in a bin under the stairs for Wyatt.

Keeping my house clean is almost impossible with three kids and two adults rampaging around (and a Mommy who is absent a lot of the time).  However, we do our best and these little organizational projects are in fact all consuming for a bit, but in the end, totally worth it. Even if they only save a minute here and there, they surely add to piece of mind, which is in short supply also. We have other projects coming up in the future which should help out even more, but until then, we will continue on with our War on Time and Stuff.  It's frustrating with two babies sometimes, that is no joke.  There are only certain times that we can shop.  There are only a few brief windows throughout the day that one of us can nip off and complete a small task.  We are still changing about 10 diapers a day, give or take a few between them.  We are still preparing some chunkier-texture baby food, but for the most part the babies totally feed themselves finger foods (which is less or more time consuming, depending on the day).  Keeping abreast of their dietary needs is another blog post all together;  suffice to say that it is interesting when one has 12+ teeth and the other has four and is still trying to master chewing.  Yargh.  My brain hurts just thinking of it.

Someone at work yesterday morning asked me "how do you stay sane?" after I regaled him with my early morning pre-work adventures, including a stopped up sink, two loads of laundry and a Lovecraftian bug (centipede) in my coffee cup.  I quipped back "I'm not so sure I was in the first place", but really, I have my little hobbies and my few stolen minutes here and there (like the ones it took me to write this).  The stress does build up still and when it does, I have to do some mental housecleaning and organizing as well... which I try to do regularly. (I said "try".)  On the other hand, I am reminded of a sign that I saw in a nursing station some time ago that said:  "You don't have to be crazy to work here, but it helps!".  That is closer to the truth, really. It helps to be slightly off kilter while I have three kids careening off every surface and each other.  If I was totally balanced, I don't think I would be as adept at things.  You sorta need a slightly off centre, drunken style half-spin to manouever through our chaotic life. It will never be completely organized, hell, we may never all be clean again at once.  However, it's our life and we love it.  Time doesn't love us, but we are going to show that broad up by living well.  It is the best revenge, after all.

Sunday, September 2, 2012

Moment to Moment

"The ability to be in the present moment is a major component of mental wellness." 
--Abraham Maslow

Many people aspire to "live in the moment".  In today's world it has become cliché.  In Team Logan's world, this is our reality; we live in a series of moments, strung together like beads.  There are many reasons we do this; we do this for happiness, we do this for survival.  We do this out of a need for stability, even for a need of self-actualization. Most of the time it just boils down to 'because we have to'.  There is always a lot going on which makes planning and projecting almost impossible in some ways.  The past few weeks have contained some very significant moments.  Some are happier than others.  Many, especially those from work, are best forgotten all together.   There are the game changers too... those are the ones that we have learned truly matter.  We have learned to parse through all our moments and live in the ones that mean the most.  It's not about hiding or being in denial;  it's about staying focused and enjoying ourselves as much as possible.

A very significant moment occurred a week ago Thursday.  That morning, I found myself once more staring at fish.

Unlike the last time that I found myself tranq'ed by this particular tank, my daughter was buzzing around the room, occasionally stopping to gaze up at the waving tails within.  Her twin, my son Wyatt --- the reason we were here --- was perched on my knee.  I bounced him absentmindedly as he watched his sisters antics and grasped my fingers with his chubby fists.  The bubbling of the aerator was soothing;  once more I found myself falling into a trance when we were called into the cardiologist's office.

The uncertainty of Wyatt's heart has been looming over us for so long.  Like the Sword of Damocles, it hung in the balance on the barest of horse hairs .  So far, so good:  no CHF;  no meds;  no cyanosis.  No coughing due to fluid in his lungs.  No infections outside of the two colds the kids have endured.  No antibiotic use outside the NICU.  We've been lulled into a sense of comfort by our lives, we've tricked ourselves to not see it.  Occasionally, we look up and remember.  Sometimes I can almost feel it's keenness whisper across the back of my neck.  Whether we want to admit it or not, we are "cardiac parents".  Our son would be farther along in his development if he didn't tire so easily.  This day we will get answers.   We find out if we're continuing along, or if we're steeling ourselves and actively planning for his surgery and subsequent recovery.  There is a lot hinging on the next hour or so, ranging from the usage of accumulated vacation time to Christmas plans to our future in general.

It's a familiar place, this office.  I like the doctor very much.  His wife is also lovely and works as his sonographer.  Both are very highly regarded in their field.  However, my stomach is in knots and my son can feel it.  He is not himself today.  Although a little tired, he should still be more outgoing, friendlier.  Even when exhausted he waves at strangers and smiles toothy grins at old ladies in the supermarket.  Today he is in "Michigan J. Frog" mode.  Somber, half gazing around him, shoulders slumped.  Looking every inch the stereotypical archetype of Down syndrome.  I too am going through the motions as I robotically move about this appointment.  Wyatt is weighed and measured:  10kg, 70 cm (22lbs, 27.5in).  He's a little heavier in the few weeks since the visit to the pediatrician.  We go on to consult with his physician. 

History is gathered, Wyatt is assessed.  We return briefly to the waiting room before being called in for his echocardiogram.  For the first time here, Wyatt is sedated, given a tiny drop of midazolam in some chocolate milk.  As it takes effect, he becomes slower and looks drunk.  He stayed awake through the entire procedure, calmly gazing around and occasionally focusing on the Dora the explorer tape the sonographer had popped into the overhead TV.  We went back to the waiting room one more time, before I was called in to see the results.

As always, the cardiologist played the recording for me.  In real time, I watched my son's tiny heart as it beat within his chest.  The ventricular aspect is almost indistinguishable at this point;  to my untrained eyes it looks like a simple narrowing in the septum.  Two valves opened and closed with each beat;  above which the atrial septum was distinctly absent.  The beat was strong, regular, steadfast.  The back flow through the valve highlighted in colour.  "A few stitches" would ease this problem, nothing more.  I nodded, smiled appropriately, waiting and attuning myself to his every gesture, his every nuance so that I would not miss or mistake the information that was coming:

Pre-op appointment in 8 months.  Surgery, most likely within a year.

It is not bad news, it is not good news.  It is news that allows us to breathe again.  To plan.  To have some kind of idea what the next little while is going to look like.  It may seem like an incidental but there are so many things at stake.  Vacation time can now be planned and the current accounts that were held back "just in case", used for their intended purpose (and alleviate my current level of exhaustion).  Anniversaries, birthdays, Thanksgiving, Hallowe'en... these events are allowed to exist again.  Although their exile was self-created, it is impossible to imagine the future while that blade could fall any minute.   It's still there, but is supported by much stronger stuff.  We have a plan. We can do this.  This was an important moment;  this is one of the moments that allow us to live.

A few days before our trip to the doctor, we were eating dinner in front of the TV and Zoe was doing her best to cruise for tidbits.  The night before had been complete hell for both her and us as she was awake and screaming a great deal of it.  She has quite a few teeth coming in at once and I have no doubt that her mouth is terribly sore.  So much so that her appetite has decreased overall and she is more apt to eat soft squishy things and drink her milk.  I'm not adverse to giving the kids food off my plate either as I want them to eat and to experience different flavours and textures.  So, she was travelling back and forth between Sean and I and taking bites of our pizza.  At one point I made her use her sign for "more" and half jokingly said "say please".  I didn't get my please, but what I got was even cooler.

She said "Mama!".

I have been almost torturing her for months with "Mumumum".  My eldest son did not call me "Mum" until he was much older.  He was speaking in full sentences by the time I actually got a "Mama" out of him;  up until that point he had called me "Lady".  Zoe's "Mama" was typical of her;  sudden, it caught me off guard and was accompanied by a grin that would lead you to believe that she could do this for months but just didn't feel like it.  I tried not to freak out but still scooped her up and danced around the living room a bit while covering her with kisses.  It was awesome.  All the kids joined in the fun as Wyatt screeched and giggled on the floor nearby while Quinn shouted "woo hoo!".  Truly a banner moment.  She has been doing it sporadically since then, but she is aware that it has impact, the little minx.

Nine days later, the babies and I were in the kitchen as I was feeding them dinner, while Sean prepared ours. Wyatt was across from me in his high chair and both babies were babbling away in between courses.  At one point he said "um um um" and I smiled at him and said (like I had a million times before) "say Mama". 

So he did.

Not only did he say "Mum mum" but he held up his spread hand and tapped his thumb to his chin, making the sign for mother as well.  Suddenly, things got pretty blurry and I was lightheaded as I choked back the scream of delight that would surely have scared the daylights out of him.  As it was, I still pounded my feet on the floor and a few tears rolled down my face as I squeaked "He said Mum mum!  He said it!  AND THE SIGN!"  I covered my little guy in kisses as I had his sister;  he just laughed at me and reached for his dessert.

These are the moments that you live for as a parent;  as a special needs parent, doubly so.  We have no room for complacency on Team Logan; each new feat is celebrated to the max, each new skill rewarded.  All the sleepless nights, all the fatigue, all the hours of therapy, all the pain is gone in an instant and replaced instead with a supreme joy that I doubt I could explain fully.  Imagine a hundred pipe organs exploding into fanfare while fireworks rocket overhead and you will not even be close.  These are the moments that make everything worthwhile.  These are the moments that make you feel alive.

We will have more moments of note in the near future.  Our eldest starts Grade 1 on Tuesday.  We will have new words, new signs, new methods of locomotion and expression.  There will be more teeth, more texture and more variety to meals. There will also be the sleepless nights, frustration and tears... some of which might actually be from the children. 

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