What's Up?

"And so I cry sometimes
When I'm lying in bed
Just to get it all out
What's in my head
And I am feeling a little peculiar
And so I wake in the morning
And I step outside
And I take a deep breath and I get real high
And I scream at the top of my lungs
What's going on?"
--What's Up?, 4 Non Blondes

I feel like shit.

I've probably listened to The Wall eleventy-teen times this week.   That's usually not a good sign.

In the echoes of the back of my mind, where my critics, both real and subconscious live, there is a little (metaphorical) voice saying "Why wouldn't you be?  Look at your life."

I know.

I work too much, I sleep too little.  I am the sole breadwinner for Team Logan.  I spend my one life, working both days and nights where I wade through the depression, psychosis, mania and addictions of a populace.  I then come home to my other life, my three kids who deserve healthy, happy parents, a clean house and all the attention we can give them, instead of a Mom who just wants to flop on the couch, drink Jack Daniels and play Skyrim.

For the record, I love what I do.  I love my kids, my house, the life that I have built for myself and the people in it.

But.

I.  Feel.  Like.  Shit.

As I looked around bewildered one day through some unprovoked tears, I had to sit down and take a hard look at what has happened in the last year.  I spent several months off and on, in a great deal of pain in the bathroom.  After all the tests, after all the procedures, we still don't know what that was... other than it seems to have subsided in the last month. We still haven't hit the one year anniversary of Wyatt's surgery;  although he is doing very well, that experience still haunts a bit.  Work, school, Christmas, money, family, life... When you break it down along the five axes like we would with anyone else, yeah...  I've got a lot on my plate, man.

Not to put a fine point on it, but right now, my coping mechanisms aren't working too well.  Everybody has them, it is just a matter of whether they are constructive or destructive and how well they work overall.  Coping strategies that are negative for you are pretty self evident:  things like alcohol, cutting, drugs, any behaviour that is excessive and interferes with the normal functioning of your life.  The positive ones are not as fun or have the instant gratification as the other, but have longer lasting effects.  Things like distraction, visualization, exercise, going for a walk, playing an instrument, doing a craft, doing a hobby.  The other addendum to that is that when your coping starts to fail, you really don't feel like doing any of the positive ones any more. 

This blows.  Goats for quarters, even.

Some might readily point to my second born, the one with Down syndrome.  If one were to believe the grief rhetoric that parents have been force fed since... well, forever, his existence is reason alone for me to feel this tired and burned out.  Hell, if I really wanted to, I could blame any sort of thing that I did or felt on his "brokenness".  Don't forget I was warned by professionals that having a child with a disability would break up my marriage.

Um, no.

I'm going to take yet another teaching moment (gah!) and state that I refuse to spin this the other way,  to say that he is my, rock, my salvation with a magical chromosome.  I will say that all my kids, all three of them are the reason that I do anything;  from getting up in the morning to working extra hours to not sleeping, ever.  The idea that one person can cause another's depression is laughable at best and very misleading at worst.  Ultimately, like everything else in life, it all boils down to coping.  How well, when, how in particular and how much in charge you are willing to be of it.  This is not a will yourself out of a rut through the magic of bootstraps thing any more than it is madness, an unspeakable horror lingering just out of sight in the shadows.  It just is.

As a rule, I've given up most of my vices other than the occasional drink (or three) now and again and my Coca-Cola and my coffee.  Oh dear god the coffee.  Music has always been my drug of choice and I utilize it whenever I can.   My sense of humour is also so dark that it's difficult to see most days, but it gets me through.

As I tell my patients, if it's not working, do something else.  I have basically gone from work to home to work and with the exception of a brief trip at Christmas, did not go out at all for months, except for a handful of trips to the grocery store.  It's also minus a million outside and even if I do manage to see daylight ever, it is probably snowing.  So, to offset, I took a little day trip with some girlfriends last week.  At least for a little while, I found a piece of heaven.

But, one afternoon out of 365 is not enough.

If it's not working, do something else.

We frequently re-assess how things are done in Team Logan.  It's time to, once again.  As we do not have a lot of social supports around us and not a lot of opportunity for things like nights off and "date nights" (or hell, "uninterrupted meaningful conversation"), we jumped at a proposal made by Wyatt's worker.  She found a new program through Tourism Toronto that gave parents of children with disabilities a weekend of respite.  Called "Relax, Recharge and Renew", the program utilizes many of the major attractions and hotels in Toronto and creates a weekend away for parents/parents and siblings of the person with special needs.  At first, I was horrified.  However, the more I thought about it, the more I realized, yeah, I do need some respite... 

...From my life, period. 

I do really need a break, from being a parent, as parenting all my kids (like parenting any kids), is hard.  Listening to, assessing and the assisting with the anguish of strangers is hard.  Maintaining a safe environment while still maintaining the privacy and respecting the humanity of a patient is hard.  Dealing with the systemic failures, interdepartmental issues and bullying in a regional hospital is hard.  Dealing with social isolation, dealing with a personality that is very much introverted (believe it or not) most of the time, is hard.  Writing this blog and being involved in the advocacy projects I am in is hard.  Living the double life that my job life and family life are and maintaining some semblance of balance?  Hard.

This weekend is Team Logan's weekend.  From when the car service picks us up Friday afternoon, to when it deposits us back home again on Sunday, we will be hopefully be relaxing, renewing and recharging.  And reflecting and re-evaluating.  And hopefully putting some new plans in place.

To quote Spider-man (or "Spider Ma'am if you happen to be my daughter):  "with great power comes great responsibility".  I lack spiffy powers, but I do have responsibilities--to my employer, my patients, my co-workers and my family and friends--to stay on the top of my game.  I'm not at the moment.  I recognize that and it's time to do something about it. 

I'm hoping this weekend will at least be enough of an interrupt to allow us to make some changes, to allow whatever it is that is chewing my tail to fuck off.  Hell, I'd be cool with 6 hours of uninterrupted sleep, some decent tunes and a good meal.   This weekend appears to be all that and a bottle of wine.  (I'd say chips there but I've eaten far too many of those lately.)

Relaxing, renewing, recharging, re-evaluating.  Yeah.  Sounds just like what I'd recommend.  Life can really grind you down from time to time, even if you are one of the ones that you'd least expect or are well versed or considered the 'strongest' or most brave or some other silly thing.  Lets face it;  there will always be more snow, more bills, more stress, more sleeplessness, more coffee jitters, more trolls, more physical pain, more anguish, more, more, more...  Life is like that.  

Sometimes building a fort isn't enough.  Sometimes you need to step outside, take a deep breath and get some perspective.  

...So I can get back to doing what I love.  

(That may involve coffee and Skyrim too, but you get the point.)

Ho Ho Hum

This time of year is pretty weird with us.  Unlike your average working Jane, I [enter adjective here] chose a profession that is 24/7.  In the first week of October every year, I learn whether I will be working Christmas or New Year's that year (and whether the rest of Team Logan will be visiting extended family for Christmas or not).  It's either one or the other, there are very few exceptions.  Fairness dictates that we alternate but there are some of us that do have a distinct preference.  Since my littlest are still very little and my going-to-bars/parties days are over, I really have no use for New Year's Eve other than an excuse to sit in my basement, drink wine and eat too much.  So, I opt to work it as often as I can.  My younger colleagues can go out and party and I can spend Christmas with my growing family, instead of being completely overcome with waves of homesickness and loneliness.  Lets face it, Christmas in the psych ward sucks jingling donkey balls; it doesn't matter which side of the glass you are on. 

You'd think I'd be all over the seasonal trappings like, well, me on a Christmas cookie... but you'd be wrong.  I have no idea what's wrong with me this year.  Unlike people who start in early November (or even earlier, GAH!), I wait until after my Birthday to start.  The first week of December usually finds me stomping around absentmindedly in my Crocs in subzero weather trying to hang lights on the house (which is even more fun in Crocs if there is snow on the ground).  I'll be hauling out our "new" 7' artificial tree (that we got two years ago) from under the stairs and gleefully start sorting out the Lang syne of decorations that we have.

But not this year.

Perhaps it was the uncharacteristic celebration of my Birthday that's thrown everything off kilter.  Maybe it's the piles of laundry and "kibble" that accumulate about the place.  I have no idea.  I do know that I can't shake the feeling that I'm somehow two weeks behind everyone else.

My neighbours must hate me at this point.  Everyone down the street, Christian or non, has a display of twinkling lights on their house.  Even the ones next door who more than often have a car parked on their lawn, have lackadaisically thrown a net of lights over the railing and called it festive.  I have a grumpy gargoyle, in a dead garden, which in turn is half-buried in snow.  FFS, I still have a skeleton tied to the porch (who is also, now half-buried in the aforementioned snow).

We're forgoing many of our usual customs this year--that could be part of it.  Usually I make a big deal out of a photo card of the kids to send out, but time and money won on that one this year.  I'd bet right now though that most of this stems from tiredness and a lot of the same thing that has caused a plastic femur to be poking out between the railing spokes in Mid-December. 

That 7' tree I spoke of earlier?  Didn't come down until August... and I'm in no bloody rush to put it back up again.  We stopped trying to "get one more night" out of it mid-January.  With the preparations for Wyatt's surgery and whatnot, it was abandoned (along with much of our rec room), to the spiders and piles of stuff that we dumped there as we rushed about our lives for the summer.  There's only so much "leave the tree alone!" that one person can say in a day as well.  With two curious toddlers in the house, visions of broken ornaments and trips to the ER danced in my head.

No.

Instead, I told the kids that we'd focus on their little tree this year.  That I can handle.  We always have a smaller one in the living room with the handmade ornaments Quinn and I have put together over the years (and the ones he made at daycare and school).  Our old one went to fake Christmas tree heaven last year (see "leave the tree alone!), so this year found me hitting Canadian Tire to get a new small one.  It proudly graces our living room where we spend most of our time.  Q and I have already added to it and I look forward to the little things that we can all work on together for it.

My enjoyment right now comes vicariously through the kids.  Quinn delights us daily with the spoils from his Lego Advent Calendar.  I'm still at a loss why the Firefighter came with a sausage, but okay, sure.  We've also discovered that we're both good at making what he calls "snowflake lanterns".  Actually, one of my colleagues gets the credit for these, but after she had taught me (and we decorated the nursing station) I came home and taught him. (Here is a handy how-to.) We were somewhere around the second one each when he turned to me and asked what would happen if he alternated the widths of his cuts back and forth.  Having only done thin or thicker strips, I had no idea and admitted that I wasn't sure if it was going to work.  He shrugged and gave me the look while telling me that "it doesn't matter if it turns out as expected or not... it's still art."

Ok then...

Once we ran out of blank paper, we used some of his origami paper to make both large ones to hang from the ceiling and a few small ones to hang on the tree.  We did this in just under an hour and the twins got up from their nap to a world of wonder. They ooohed and aaaahed over what Zoe calls "the kites" covering the living room ceiling for quite some time.  It's the little things...

Homemade ornaments on The Kids Tree.  The white and red
ornament is a smaller version of our "snowflake lanterns".

The stockings got an overhaul too, in preparation for Santa's arrival.  Quinn's ripped last year, so he got a brand new one and every other one needed a drop of glue here or there or a touch up of any sparkles.  It was fantastic watching their eyes light up and Zoe's little feet dance as I showed them the results.

I'm sure I'll get there eventually... by the time Christmas Eve rolls around and we watch It's a Wonderful Life (and cry) for the umpteenth time, I'll be in the zone.  Maybe I'll snap out of my Seasonal Funk in time to get my Merry on and bake something before hand.  Or, maybe not.  Things like having to slog fruitlessly through the mall crowds for two hours last night searching for snow pants for my eldest, while my youngest yelled at random passers-by (in between nose wipes) and my middle child pulled everything down that was within reach... really aren't helping to be honest.

Meh.  I'll just have to listen to some carols or at least some Zebrahead over and over until I cheer up.  Maybe I'll go make myself some grog and find enough happy to go hang those lights and finally take the skeleton down.

Or maybe not.

Or... Maybe I'll just give the damn thing a hat.

Cups of Coffee

"Caw-fee fweeze?" (Coffee please?)

A small blue cup and a silver pot are thrust at me over and over as my daughter makes believe that she is making me coffee in the toy kitchen.  At my nod, she'll say "coming right up!" and then 'boil' the pot on the burner-like circle that makes bubbling noises.  She will then hand me both cup and pot with a cheerful "here you go!" (which proves she will never work at Tim Hortons).  I will sip pretend coffee for the seventy-fifth time in an hour (give or take) and watch the delight spread across her face as I finish my exuberant slurping with a loud "ahhhh".  Every time she giggles, then skips back to the kitchen and putters about a bit. Her hand noticeably trembled as she attempted to hang one of the plastic spoons over the little sink.  She focused intently on the spoon and the tiny hook for a few moments and eventually completed her task.  After a satisfied nod at her handywork, she whirls on her heel to ask "Caw-fee fweeze?"

This kitchen and a few other more advanced toys have been introduced into the twins' world in the last while.  It was originally purchased for Quinn a couple of years ago--he played with it incessantly.  At first he made us all manner of treats and concoctions in his kitchen.  It then became a restaurant and acting as a short order cook, he would make us lunch, usually pizzas and burgers. As time went on and he and it evolved, it became a laboratory for all manner of devious experiments.   Rare and deadly viruses were cured.  Potions were procured and super powers were endowed upon an unsuspecting populace.  It had fallen out of favour recently and has sat unused in our basement, entertaining only the dust and the occasional spider.  Now it lives in a corner of our living room, providing happiness for all.  It offers an oppourtunity for all three kids to play together... and apparently the creation of endless cups of coffee.   They say that the kitchen is the heart of any home;  right now a tupperware container full of slightly-wacky-out-of-scale-play food and a plastic kitchen is the heart of this one.

My children are growing and changing right before my eyes.  Long gone are the fragile bird-like creatures in the NICU that clung to life with a fierceness that is only matched by my love for them. My eldest meanwhile, has grown into a very wise-for-his-years little sir.  These changes only underline that nothing is permanent,  that life is forever tumbling forward. They are not the only ones that are aging either.  I am reminded of that every morning as I no longer spring out of bed, excited and energized for the new day. (Okay, I never did that, but you get the idea).  Instead, I fumble for my glasses and shuffle off to the bathroom, willing my stiff limbs into motion.  As I swallow the first of the day's Tylenol and blink over my (very real) coffee I am very aware that this coming birthday will start with a four and end with a two.  As the magic elixir starts to work, I'm reminded that I'm only halfway along this road and there is so much more awaiting me. 

I had a rare second cup this morning as I awaited the results from Wyatt's echocardiogram.  We found out what we already know;  that his oxygenation is up, his growth is up, his development has skyrocketed and that overall he's a different kid than he was before his surgery.  This week alone I've seen him hold his hand to his ear and say "hello?" into a 'phone', go up the stairs on all fours, learn to cough into his arm, offer up empathy to a sick friend, console each of his sibs, advocate his wants to each of them as well, use half a dozen words appropriately, count to three, and stand up unsupported for a few seconds.  He is on the cusp of so many fabulous things right now.  His cardiologist reinforced what we already knew;  his heart is "beautiful". So much so that the doctor doesn't want to see Wyatt for a year.  As I watch him reach up to the cupboards on the kitchen to pull out a pretend plate for his real toast, I smile and wonder what next year will bring.  Gone is the impression of a ticking time bomb in his chest.  Gone is the sword over our heads, gone is the lurking fear.  Instead there is just a boy, one who always offers his cup up for "clinks" (cheers) and wants to hold my hand during meals. 

It was over coffee that I read my eldest son's report card and marveled at how well he had done and how silly some of the comments seemed.  As a rule, these things are pretty stock: "...is gaining proficiency with adding and subtracting to 20", "can identify three states of matter" and "can identify living and non-living things" (oh please...).  One of these comments did stand out for me as I read through his mid-term;  it read "next steps:  Quinn is encouraged to experience life to the fullest, and enjoy each day as it comes."

What the...?

Is that like YOLO?
Is he depressed?
Bored?
Should we consider moving him to an enhanced class/school?
Is he still being bullied?

Sean attended the parent teacher meeting as it was at 9 am after a night shift, not historically a stellar time of day for me.   During the meeting he was told that Quinn is "a bright light" and almost without exception universally accepted and cherished in his class.  His classmates have advocated for him as much as he stands up for them.  After a little discussion including potential boredom, Sean was told that if we wanted, we could do the official "enhanced" testing and move him to the one school in the region (that is actually outside Brampton) that handles these things.  However, we have decided to keep him where he is. He seems to have successfully overcome his issues with his peers himself and is actively learning from them as much as they are from him.  Inclusion benefits everyone.  Even the brightest lights. 

Before my night shifts, I make a thermos mug full of coffee to take with me.  Usually I crack it open during report, but the other night I was barely keeping my eyes open as Sean gave me a lift to work.  As I sipped my brew, Sean told me how he and Quinn had been discussing vaccinations on the way home from school.  Quinn asked him about the difference between measles and mumps and Sean recounted a pretty good description, including the effects of measles during pregnancy and how mumps might make a man sterile.  I cringed as I heard that Quinn asked what that meant. Sean answered "it would affect his ability to father children". 

I was anticipating an awkward conversation with my son in the near future, but my fears were put aside a second later when I was told his response:

"Oh.  You mean it affects sperm production.  Okay then."

I wiped the dashboard off as best I could, but I'm still finding spewed droplets that I missed.

My life can easily be recounted by cups of coffee.  Physically it has allowed me to maintain the furious pace of my life. The loss of sleep. The soul crushing schedule.  Metaphorically it has allowed me to understand myself as one who changes the world around them.  It has been a good metaphor for this year of my advocacy.  Coffee has taken on a new role lately too, as its consumption has helped precipitate a few of the "attacks" I continue to have.  However, my daily medication and my "emergency" meds are helping while I await more clues as to what is happening to me.  For now, I can still have my cuppa.

My love affair with the bean is pretty much like my love affair with this life.  It can be savoured, drunk fast, provide comforting warmth or offer up a burst of frenic energy.  It can leave me shaking and strung out.  It can be enjoyed with friends and family.  It nourishes and soothes and gives me a piece of home while I wade through the anguish of strangers during my work day.  I can pass time, share fellowship, extend kindness and as it turns out, spend time with my children and marvel at the beautiful little humans that they are.

"Caw-fee fweeze?"

Yes darling.  I'll have mine with milk.

Keeping it Real

I'm not unhappy.  My life is pretty good.

I know this will cause many of you to say "duh!" rather loudly, but there are a lot of people out there that still can't wrap their heads around this.

We're not unhappy.  Life is not hard.

Oh sure, we have our fair share of poopy diapers and kitchens that don't clean themselves.  There is drama.  There are skinned noses, hurt feelings and juice spilled from one end of my house to the other.  There is life, sure.

But we're happy.

There are a lot of things we would like to change, of that I have no doubt.  My husband is a stay-at-home Dad and I'm pretty sure he'd be perfectly happy to be back at his old job on those weekends when I work nights.  Surrounded by the aforementioned poopy diapers, swimming lessons, yell-y kids, an utter lack of privacy, quiet, and a complete thought; he'd be bananas not to.  But, he's not miserable.  The little ones go down for a nap at some point and the big one is content to hang out playing video games or quietly watching a movie in the mean time.  In a related story, I'd give my (honorary) left nut to be able to stay home with the kids.  Ok, I'd probably work one day a week, but to not have the responsibility of everything fall directly on my shoulders is a nice dream too.  Something for "when we win the lottery".  I think there are times when we would both change this part of our lives.

But, we're not unhappy.  Not in the least. 

Back in the early days, the just post-potential-diagnosis-but-not-sure-but-there-is-an-AVSD days, I was pretty sad.  I had a right to be, having just lost an Aunt I cared about very much (and didn't call much in her final years) and almost losing a very dear colleague in a horrific car crash.  I was also super pregnant with twins, super heavy, slow, in pain almost constantly and had to wear "Batman" anti-embolism hose that took me no less than half an hour to sweat my way into each and every day (and a nerve wracking 5 minutes to gently fix every time I had to pee, which at that point was eleventy-zillion times a day).  I was very sad when I was told about my unborn baby's diagnosis.  As time went on, I was told I was sad as I was "grieving my perfect baby".  Once they were here, once we knew about Wyatt's karyotype, once the twins were being kept alive in the NICU, I was told by a social worker and every piece of literature that I was handed that I was grieving.  As I continued to write updates to my family, that is how I described it.  Grieving.  Down syndrome was making me grieve.

I learned more about DS when I  got the babies home.  I also learned all about them, their individual personalities and got really into the swing of being the parent of infant twins.  It was then that I started to figure out my emotions a little more.  Ok, so DS wasn't what I originally imagined for the ONE baby that I thought I was going to conceive, but really, is that one little chromosome the source of all my sadness?  How about postpartum blues, post-surgical pain, recovery, or multiple personal losses?  In relation to my son's very real cardiac condition and the two fragile lives for which I was terrified, how about simple fear?  In retrospect that sounds like the recipe for postpartum depression, not my son's T21.  My own husband, upon hearing the "grieving" bit, argued with me.  "It's not like anyone has actually died!"  he said to me, exasperated. His mother had passed away suddenly in 2001 and it was this very real loss that he referenced now.  However, as told to us by that social worker that came to see us while we held our tiny sparrow babies, we were grieving our son's Down syndrome diagnosis.  It was only natural, after all. 

It took me quite some time to sort out my thoughts and feelings, probably compounded by my early return to work and the challenges I faced because of that.  As the children grew and my son became more of a boy and less of a baby, it became more evident how he was just himself, not some list of potential or actual diagnosis, not some 'special' baby, not the source of any familial discontent.  You see, I was told that my husband would leave me, that having a disabled, a "retarded" baby would ruin our lives, our marriage.  I was told by many "well meaning" people that it was a good thing that "Down's children" were so loving as I would have a forever child.  I was told by every medical source, by every appointment, by every medical professional that his extra chromosome would be the cause of a life of sickness.  I was told by a nurse that it was a good thing he was a boy, imagine how tragic it would be if he was a girl?  I was consoled for his birth, often multiple times a day.

I wish I could wave the realization of what I had attributed exactly to his extra chromosome off as a "D'oh!" or "A-ha!" moment, but the reality is I was deeply ashamed at my participation in the "love the baby, hate the disorder" mentality.  How I would love him "despite" his Down syndrome.  How as a family we would "overcome this obstacle".  You can see that here in past posts, as my writing changes and as I became more of the advocate that I am today.  Of course, I still had to really start to check my ableism at the door and realize quite a few more things, but you can see where I actually started to get it.

This month, being Down syndrome Awareness month in the US, you would expect me to be all over this like in years past. But, I'm not.  There's a lot of reasons here, ranging from current personal illness to personal perspective.  I'm not so keen on the "awareness" any more;  the colours, the gew-gaws, the posters.  Instead I'm all about the education or the advocacy part.  Even the activism part.  One could argue that I always was more of an advocate than awareness raiser given the topics of most of my posts in Octobers past... I may partially agree with you too.  However, as I've stated before, I'm done with awareness.

Instead, I'm going to advocate.  Hard.  It may not be pretty, it will probably seem to some like I'm shouting.  It may seem to some that I am full of hate and anger and all the things that I am accused of because I don't write about unicorns and rainbows and flatly refuse to accept things as gospel as they have been "always done this way".  So be it.  I will continue to challenge the stereotypes and whatnot that many people maintain as "fact" about Down syndrome.  There will probably be swearing.  This is what I do. 

That particular social worker is no longer telling new parents of children with T21 about grieving the diagnosis.  In fact, I've helped develop resources for new parents.  This blog is routinely passed out as a reference and I have been personally thanked by a great many people.  I am no longer misplacing my emotions onto my son.   He is no more or no less stellar than any other child of mine.  My desire from day one was to ensure that nobody else would either, even if I couldn't process or understand it properly.  We are not unhappy.

We're us.  Full of emotions and drama and all the little things that make up Team Logan.  Sometimes we're happy, sometimes we're sad.  Sometimes we're silly and giddy sometimes we get frustrated with one another, hell, even argue.  Sean and I worry about the things that other couples do, like money and our health and whether or not we're getting enough sleep.  The kids romp around here together, spreading chaos and love in their wake... and occasionally whacking each other with toys.  Down syndrome is literally a microscopic part of that, if it is really a part of that at all.

We're not unhappy. We're real.

I long for the day when no one is surprised at that statement.

[A banner for Down Syndrome Uprising, depicting the text "Down Syndrome Awareness Month,
with the word acceptance stamped over the word awareness.]

Reflective Practice

It was raining when I started to write this.  Which was welcome, as 35 degree weather is not proper for Southern Ontario.  Especially in September.  We've needed the rain and the last growing days of the garden will welcome it and more.

The garden is not alone in welcoming this storm;  the rain was soothing to my frayed nerves and the light show seemed to pick up my spirits.  The last little while has seen a few things that have made me reflect... on life, on my job, on my advocacy and really, everything down to these words you see here.

I've been trying to make sense of a lot of things in the last little while, trying to incorporate new ideas, trying to understand the motivations behind certain things.  It's been hard.  Too much has happened, too much stimulation, too much, too much...  Back, what seems like a million years ago, I had an older Italian lady as a patient.  I sat down next to her one morning and after the usual pleasantries asked how she was feeling.  Without missing a beat, her eyes bore into mine and she half laughed.  "How I feel?  Girlie, I canna stand, I canna sit still and my headsa goin' aroun' like a chick-a-loan!"

I know how she feels.

Although not completely cyclonic, my thoughts are pretty all over the place.  I've written no less than three posts this week in an effort to get my shit together;  they cover all flavours of outrage and pain and psychiatric analysis... and I have not published a single one. It's been hard.  There's been too much.  I'm fine... well, aside from a gallbladder that hates me, but the family is fine.  But, there's been a little shakeup, a little wakeup... I've been doing some serious self reflection.  It's a side effect of being a nurse, a pre-requisite of renewing our license and really a valuable tool for everyday life as well.

All the stereotypes have come out to play in the wake of the recent murder attempt of Issy Stapleton.  I hate the intar-webezs right now.  Over and over I have seen this act discussed (by both the able and the parent advocate) with words that just blatantly exhibit the intolerance that it sprang from in the first place.  Yes, there is no doubt in my mind that her mother (who will not be named here) was mentally ill.  The system in which she was navigating is very stressful to many parents, I won't argue with you there... but it still does not justify murder, or attempted murder in any way. 

Many people, including some that I respect greatly, have commented on this incident at length.  Anything that I would have to add, at this point, would serve little purpose. As a side effect however, this horrible act catalyzed a lengthy self-reflection re: my online advocacy; an analysis in the works for some time.  I've looked at my efforts, my words, the rationale behind them. Are my affectations effective?  I've had to do this.  Issy's mom was a blogger and "parent advocate" too.  Many self-advocates are wary or flat out despise blogs by parents of kids with special needs.  This event just crystallized those reasons even more.

A valuable resource came to me as I was trying to get my thoughts organized. Alison Piepmier's Saints, Sages, and Victims:  Endorsement of and Resistance to Cultural Stereotypes in Memoirs by Parents of Children with Disabilities provides a great deal of insight into this issue.  Although Alison uses formally published materials for her comparison, I believe that parent advocate blogs could quite easily be used here as well.  This part in particular jumped out at me:

"Many of the memoirs I have read reinforce and thereby strengthen our culture's dehumanizing stereotypes that surround and define disability. Through their use of grief, their emphasis on a limited medicalized model, and their framing of the child's disabilities, these memoirs often represent the child not as a person but as a problem with which the parents have had to grapple. "

It's a fine line sometimes, wanting on one hand to find others to share in the experience, but at the same time, what are the costs?  When we call our children "broken", when we focus on our interpretation of their thoughts and feelings, when we refer to our children with otherworldly terms, when we focus on the difficult times, when all we list are doctor's appointments, surgeries and medical interventions, when we blame our kids for our mistakes and our bad choices, what message are we giving the world?

I just spent most of the month of April talking about my son's heart surgery.  Did I unwillingly perpetuate the medical model? Has my son become a bystander in an accounting that was meant to educate and support those (and their families) that face AVSD surgery?  Has my telling of appointments and whatnot in the early days been detrimental overall?

I don't know.  I just recently checked my Ableism at the door, so I'm probably not the best at interpreting this.

Every time I mention one of the kids or post an image I do think about the ramifications.  I think about it in context to them.  It wasn't an easy thing to talk about my elder son's bullying for a variety of reasons, the main being Quinn's interpretation of such a thing.  I talked it over with my husband,  but I made sure that I asked my son's permission too, before I breathed a word of it.  

Is this exploitative of my family?  I don't know that one either.  There are no T-shirts, I don't have a shop and there is no money being made here.  (There won't be, either.)  I already have a job, so looking for a writing career is not my intention.  The focus of my writing has changed, true, from those early days when I just wanted to raise awareness, find other twins like mine and still research the things that I could not find out about Down syndrome and did not know about prior to becoming Wyatt's mother.  Secondary gains? There are a few, including a general sorting out of my thoughts and meeting a lot of really cool people in the disability community that have helped to broaden my views.

Is it possible that I have reinforced stereotypes of disability?  I'm sure I have.   I too am an able product of this society that needs to devalue and ostracize to survive.   I'm also a member of the medical establishment, the people responsible for the perpetuation of the idea that disability is a disease and needs curing.  Toss parent blogger onto that list.  On the surface, I'm part of the problem.  No wonder I am uncomfortable in my own skin lately.

So why do this?  Why continue doing this when there is so much conflict?  That one is simple:

There are a lot of people out there that hate people like Wyatt.

Even those that claim to represent people with intellectual disabilities and developmental delays are often more concerned about image and the "correct marketing of Down syndrome" rather than basic, civil, nay, human rights. Allowing certain things to slide, things that you probably would not tolerate in another circumstance just reinforces these stereotypes and keeps things like across-the-board inclusion and acceptance out of reach.  Portraying life in over the top happiness isn't helpful either, as it perpetuates "overcoming", instead of just letting people be themselves.  My son is not a product to be marketed like Wonderbread, or the latest pop sensation.

I've gotten a little heat lately as I've been writing about some pretty "heavy" topics and apparently I should be more positive.  I'd like to lighten up, frankly, to be able to write about my daughter putting fries up her nose and announcing she's a "Rawr-rus" and all the little human moments that make our little family.   To make this more of a parenting memoir that focuses on the joy of being... well, us.  Together.  With all our little quirks and idiosyncrasies and adventures.  But I can't.  I can't because society won't let us just be us.   One of us came with an extra chromosome.  To us that's no big whoop, but it's still a dealbreaker to many people.

There are no conclusions to this one.  Reflective practice, when done correctly, is an ongoing narrative.  I know that I'm not going to do everything right, being human and all.  I hope my self-advocate friends continue to be patient with me... even when I need a round of "able-splaining".

I'm going to go spend time with my kids today and make a buttload of tomato sauce.  In the act of creating something to nourish my family through the upcoming winter, I will find a little more peace. As the twins interact with the jungle yard after the rain, as my elder son regales me with his day at school, I will be reminded why I do this.  So that all my kids can one day tell me of their day at school, where Zoe and Wyatt and Quinn can continue to grow and learn.  Together.

So that we can continue to be just us.  Together.

--------------------------------
Piepmeier, Alison. "Saints, Sages, and Victims: Endorsement of and Resistance to Cultural Stereotypes in Memoirs by Parents of Children with Disabilities." Disability Studies Quarterly 32.1 (2012):  Disability Studies Quarterly. The Society for Disability Studies. Web. 11 Sept. 2013. <http://dsq-sds.org/article/view/3031/3058>.

Wordless Wednesday: Summer Kisses

Driven to Distraction

I've been trying to write a post, while I'm off, for the last 5 days.  I've started two really good ideas, one meh idea and this one... and I keep getting distracted.  Not by one thing in particular, but derailed by all the things.  I have a bunny in my backyard.  I hate the way the racoons keep digging up my garden.  The kids are rioting.  There is a fly in here.  The living room is a mess.  Phone?  Whar?

It's raining!
It's sunny!
It's hot! 
Bunneh!

Ugh.

I guess on paper my reasons are as good as any:  full time job, that job is hard, I have three kids, twins, a kid with special needs, I work shift work, I never sleep, I'm always tired.  The reality is a lot simpler: I'm not doing a lot right now as I am off.  OFF, I tells ya!

See, this is what people are supposed do when they are at home and not working.  They rest.  They catch up on hobbies and connect with friends.  They read and watch TV.  You can do things with the kids, whether formally organized or not, or just hang out.  Leave it to me to assume that this is some new pathology, most likely brought on by caffeine withdrawal.  But, it's not.  It's more likely that this is what happens when I don't have things looming over my head.  It's been a long time since that has occurred.

It's been refreshing frankly (and I seem to have gotten just as much done).  I'm not stressed out for a change, which is good.  In between random observations, life has gone on as it always does.

My first day off (after my last night shift) is traditionally my "silly day" as I don't sleep until the kids go down for their afternoon nap.  Usually I pick this day for all of us to go shopping, which generally gives my husband an eye twitch that lasts him a good few days.  This past week it fell on Friday, which is a great day to get groceries before the store is mobbed for the rest of the weekend.  It's also a good day to do any errands that you want to do.  This week, on a whim, I actually wanted to visit a bookstore.  That may sound like an innocuous request, but I usually don't have time to go.  I barely have time to read;  when I do,  I order books online or have Sean pick them up for me. This time, I had worked!  I had been paid! By gawd I was going into a bookstore!

Ever seen The Sound of Music?  As I walked through the front door and the first vapours of "book smell" mingled with burnt coffee hit me, I was Julie Andrews.

The hills are aliiiive, with the sounds of rea-ding...

Dramatic?  Yes.  But totally on point.

I miss puttering through books like this... I always end up buying way too much; at least I recognize that I'm still a book addict and that I can't own all of them.  As we went to the children's section and Zoe began to act out, I realized something else:

We have started the "terrible twos".
With two of them.
I have two children in the terrible twos.

We were busy feeling for looking for Lego Mini-figs for Quinn, when she started thrashing in the stroller and screaming "Help me MAMA!  HELP MEEEE!" while leaning as far out of the stroller as her harness would allow.  I could feel every eye in the store on us as I casually addressed my daughters pleas for release.  Without looking, I could also tell that husband's eye twitch was worse.  His voice was a little more taut than usual when he expressed how glad he was for me to be there "this time" as other times people have looked at him like he was a kidnapper.

*facepalm*

We continued on with our mission.  Right on cue, Wyatt started up, leaning out of the stroller the other way (possibly for balance).  He howled whilst simultaneously chewing on his finger to indicate to us that his incoming tooth was the source of his discomfort.  With now two children kicking and wailing, one of which needing Tylenol, we had to go. 

As I loaded our finds on the counter, the cashier asked "Going on a trip"?

*blink*

Maybe it was my two wailing kids in the background but for the life of me I couldn't figure out what he was saying.  Trip?  Where? With this lot? Was he mad?  Had he any idea what was involved in such a thing? Did he not know?

After an awkward pause, during which I stared at him and wrestled with the word shapes he had presented me, I dropped my eyes and answered "no" very quietly.

"Awahh" he answered (or something similar) and having paid for my new treasure, we left the store, the kids still freaking out.  They were fine once they were buckled into the Whaaambulance and we were able to complete our shopping with a minimal amount of shouting.

The raging.  The throwing of things.  The screaming.  We went to friends' house for dinner on Saturday;  they have two lovely, well trained (and child accustomed) Vizslas.  Sadly, two out of my three children would start screaming and shaking--seemingly with rage--every time one of the dogs approached for a friendly lick or sniff.  The twins would alternate ear piercing screams at random intervals.  It wasn't out of fear after the first few encounters; as time went on it just became their stock answer to a doggie approach.  It's no wonder the wine evaporated at an alarming rate.   There is hope for everybody tho' as Wyatt reached out to pet one of the pups;  however, the sniff he got in response set off another round of Baby Hulking.  Another day, I guess...

There are some side benefits to this stage.  Wyatt is now officially in the 95th percentile for weight. You can actually see by the increase in muscle mass since his surgery.  His weight will drop dramatically as he learns to walk;  that isn't that far in the future I don't think, as he managed to slowly cruise most of the length of the couch yesterday.  Our pediatrician was so impressed by both of them last week that she didn't want to see Zoe for 6 months and Wyatt for three.  He has a fabulous pincer grasp and point... even if he is only using it to turn the TV/VCR/DVD off.  And on.  And off... 

Zoe, our youngest and most loud precious, seems to require some sort of gymnastics training or her own crime-fighting circuit.  I can feel the hairs turn grey now as I remove her from the back of the couch, the bookcases, the chairs.  She is a thrill-seeker with a temper.  She also loves to play with both of her brothers, which makes my heart smile.  She is delighted to play "blocks" (Duplo) with Quinn...and anything else she can think of, but she will also take time to sit on the floor and roll a ball to her twin (despite fighting over everything else).  They rolled a ball back and forth--with very little intervention from us--one night for over 20 minutes.  She also makes sure that he gets his snack or drink first.  "Here Why-ATT", she'll say, handing him "Why-ATT's nana" (banana) or "Why-ATT's cookie".  Although I love all my kids equally, this one is my girl.  My colleagues at work are in agreement that she is Karma's way of repaying me for, well, me, but as she stops mid-gallop to bed at night and whirls around to say "Goodnight mama" and give me a kiss (and honk my nose), I think I'll let them believe what ever they like.

Distracted.  I am soooo distracted.  How can I not be?  There is always so much to process.  There is always so much to learn and experience.  Quinn is finishing Grade 1 this week.  We have to figure out his camp schedule and discuss what we can do to socialize the twins more. After now, I won't surface and see my family except in brief flashes until Sunday morning.  I will write that post on Abilism and continue my Brief History... series at some point.  Until then, as you can well imagine, Te...

BUNNEH!

Silent Sunday: Spring Sunshine

Prelude

"After silence, that which comes nearest to expressing the inexpressible is music."
--Aldous Huxley

It has been quite the journey to get to this point. I have known since my twins were about 30 weeks gestation that Wyatt was going to have open heart surgery.  After all the appointments, after all the back and forth and the changing of dates, he will finally have his heart repaired tomorrow.  Our final preparations will happen tonight.  We will travel to the city in the early hours of the morning, our nerves taught, fraying... and hand our son's life over to the surgical team.

We've been in watchful waiting mode since the pre-op appointment.  Is that a sniffle?  A rash?  Is his stool looser than normal?   Doesn't he seem a little warm to you?  Any sign of infection, any slightly off colour secretion will cancel this surgery.  It is the thinnest suggestion of Spring here in Canada; this week it stopped snowing and began raining. As a result, all the viruses are still running strong.  We've stepped up the hand washing, the hibernation.  We've limited shopping trips and excursions and become completely paranoid about his overall "exposure".  For those that know me, this is totally out of character.  I believe in a healthy attitude towards germs, that challenging one's immune system is necessary. Now, I have to be very liberal with the Clorox wipes and I hate it.

There has been a lot of preparation to get to this day.  If, for some reason, his surgery is cancelled and not rescheduled within a three or four day window, it will be too late to reclaim my vacation time.  We would have to reschedule for later in the summer.  There are other, little piddling details too that add up and cause anxiety. After much soul searching, debate and general carry on, I've decided to find formal accommodations for the first three nights of Wyatt's hospital stay.  There is a part of me that feels a certain degree of guilt over this;  my Mama-ness feels I should be there, holding vigil at his bedside 24/7.  In reality, his first three days will be spent in the CCU.  He will be the most sedated and have the most amount of nursing care.  My bed would be a hard chair or a lounge shared with other parents.  I'm a little far gone past my university days, so crashing in a common room is not really going to happen.  My accommodations will have a shower and all the amenities which will keep the "thinking" to a minimum and the flexibility to a maximum-- especially if I had to make a 2 am dash to his side or, got back at that time and need a cheeseburger.  The real work starts when he is moved to cardiology when he will be more awake and in need of more distraction.  There is a daybed in the a bathroom in those rooms. I will be more than happy to camp out with him then.

Another part of this decision was, well, me.  I know me.  I will need an escape.  I will need to decrease the stimuli, to chill out and be quiet.  I will either not want to talk to anyone, or will want to talk to EVERYONE constantly, at least the first day.  I will either sleep like a stone or pace the floor.  I need a space to either sob at random or to stare blankly at the TV.  This makes me a crappy house guest for those that have offered.  I was only going to have my Fortress of Solitude for one night, but Sean convinced me to stay for three and reevaluate on the weekend.  I hated to admit it at first, but he was right. 

I've packed and repacked and packed again for urban survival casual.  I've done ALL THE LAUNDRY and shopped for ALL THE THINGS.  I even have a spiffy new "travel" (read smaller than my 18" one) laptop that will be both a connection to the outside world and a source of entertainment for Wyatt and I. Sean and the kids have a fridge and freezer full of food.  I feel that I can disappear for over a week and know that they will be fed and have clean clothes.

There had to be some degree of discussion with the kids as well.  In Zoe's World, "Mama gone!" will be pretty significant.  She's also been waking up at random for the last few weeks screaming "Noooo Wyaaaattttt!  NOOOOOO!" which, I have to admit, has creeped me the hell out.  I explained to her, as best I could the other day, that Mommy and Wyatt were going on an adventure soon.  I don't know what sunk in, but she looked at me levelly for a moment and replied "Okaymama" before wandering in search of something more fun (I think she's figured out how to blow me off).  Quinn required a different approach: a handful of days ago, he approached me asking for details.  He's a clever kid and deserved a proper explanation. I drew him a few diagrams and talked honestly about Wyatt's heart, how the blood is supposed to flow, how the lungs provide oxygen and remove carbon dioxide, how the heart itself works and how Wyatt's is different.  Quinn listened raptly, pointing out a few things here and there himself.  At one point, he must have gotten tired with my terrible drawing ability and went to get one of his books that has an anatomical representation of the heart.  I went through the explanation again, noting that he had absorbed what I had told him the first time around.  We totally geeked out together for about half an hour more and then at my insistence, watched a little TV together.  So far, the only fallout is a general concern for his brother's welfare and a brief serious discussion about the "heart/lung machine" that occurred a few days later at bedtime.  I know many parents probably would have glossed all this over, but I know my son.  He wouldn't have been satisfied with the "kiddie version". He is still concerned, yes.  But, he knows what is involved and seems to have given him a little piece of mind.  

As it turns out, Quinn also has the best teacher ever.  In anticipation for him being a little off about his brother's upcoming surgery, his grade one teacher is filling the classroom with some of his favorite things:  space, marine biology and superheroes to name a few.   She's also asked anyone who wants to wear Quinn's favourite colour to do so, to make things a little more festive.  I burst into tears when I heard this.  Sometimes the best supports come from the most unexpected of places.

I have made it through my last two twelve hour shifts and despite my fervent prayers, the gods of Psychiatry were anything but kind.  Tonight has seen me get home in one piece;  we have
put Wyatt to bed after his pre-surgical scrub bath, will finish packing and try and catch as much sleep as we can before 3 am. My other two are hopefully enjoying their sleep over and I already miss them dearly.

There is a knot of fear in my stomach that I cannot dislodge through reason or recognition.  I know that it is there.  I know why it is there.  Right now, I will pacify it and myself through comfort.  Through distraction.  I have killed many dragons in the days leading up to this point.  I have lost myself in my advocacy work at times and done a lot of soul searching.  There are pivotal moments in everyone's lifetime where your resolve, your stamina is tested.  This is one of those times for us.  I have to embrace it as such and find the music within.  As this new stanza unfolds for us we are mindful of the composition thus far... and those that have joined us in it. We are cautious, yet strain to hear the opening refrain of this next chapter in our lives, in Wyatt's life.  With a little luck it will just be like Wyatt himself:  wondrous and full of life.

The Surgical Suite:
Prelude - Grave - Allegro con brio - Adagio - Allegretto con moto - Finale - Coda

The Cat in the Corner

With each moment, we draw closer to Wyatt's big day.  We use terms like "repair" and "procedure" and all sorts of sterile clinical things... but it doesn't change the fact that he is going to have open heart surgery.  In a handful of weeks, the day--that we have known about since his in-utero AVSD diagnosis at 30 weeks--will be here.  There is a wealth of emotion that I am trying to process; I would be lying if I said I was looking forward to this.   I haven't been myself, my sleep is interrupted (even more than usual) and I have been unable to write more than a few words.  There is no sense of impending doom, I don't want you to get that impression.  However, there is a tension in the room, a watchful waiting.  I can feel it there, sitting in the corner... with it's paws crossed and amber eyes gazing expectantly.  Only the barest twitch of tail announces it's existence, but it is there. Waiting.  Whether to pounce or settle to slumber, I cannot be sure.  But, it waits.  Patiently.

I have been going about my life in defiance of this new visitor.  Routine is maintained.  Groceries are bought, homework is done. Alarms are set, alarms go off.  The kids themselves are in good spirits and aside from another bug that has invaded our happy home (codename:  "Cough Until You Puke"), it is business as usual with them too.  They continue to grow and develop and surprise me at every opportunity.  Although I haven't given an update since before Wyatt and Zoe's birthday, all has been well with my three little minions.

Quinn continues to exhibit an intelligence that is very much beyond his years.  His easy grasp of complex concepts is only outdone by his sense of humour.  He was hit particularly hard this week by our newest virus, but has rallied just in time for March break.  His understanding of anatomy and physiology continues to astound me as he continues to ask questions that have me stopping to think.   Earlier this week, one of the fans on Down Syndrome Uprising posted a link to a nursing based page that had posted what they had supposed was an anatomical diagram of DS (which was more of a horrible caricature with misleading information).  As an added bonus, there was a caption encouraging 'shares' to bring awareness to "the devastating effects of Down's Syndrome" (spelled incorrectly).  The page itself smacks of "like farming", but the image was awful and many wrote to protest, including many that said they were nurses.  It was all a bit disheartening after a long day of actually being an RN and I was unaware that my eldest had seen the image until a voice spoke at my elbow.

"What is that, Mom?"

"It's an old diagram of Down syndrome" I told him, flatly.

"Really? That doesn't look like Wyatt.  What is all that stuff [in the middle]?"

I started to explain that the picture was trying to point out some of the things that could occur with Down syndrome and halfway through, he interrupted me;

"Why does it all look like that?  Why does the face look like that?"

I tried to explain that they tried to put a whole bunch of "symptoms" on one diagram.  He wasn't buying it.  His brow furrowed and he stopped me short with the following:

"But Wyatt only needs his heart fixed and then he will be better. That is not right. They should not say all that.  It's not right."

I gave him a huge hug as my eyes welled up.  My six year old can grasp in a few seconds what it is taking adults decades to get their head around.  Health teaching needs to be fair and balanced, not angled to be as grotesque as possible (or even worse, completely insubstantial).  That starts with teaching health practitioners correctly in the first place. He gets it and he's only six.  I can only imagine what else he is going to understand in the future. 

We try to find little things for us to do together, which doesn't always work out with our schedules.  Quinn and I have a project coming up that will hopefully sprout seedlings for our garden this year.  I can't tell you how much I am looking forward to this.  We're recycling Coke bottles for self watering planters, so it should be a fun little science experiment.  Botany, physics and ecology all in one lesson, what more could you ask for?  If all goes well, we'll get to (literally) eat the fruits of our labour later this summer.

Zoe just keeps getting funnier.  One of her latest endeavors is learning the 'spit take'.  She would take a long haul on her juice cup and then mist it out in a giant raspberry and laugh hysterically.  I thought it was funny the first time, until Wyatt started to imitate her a moment later.  They went back and forth in a flurry of 'thhhhppppttttthhh!' as they, the floor and everything around them slowly became soaked with juice.   It's happened a few times since then and I have to stop her as she starts up, or it becomes a spit take-one-upmanship contest that only ends when the ammo runs out.  She'll then declare the whole thing "AWEthome!" and move on to her next demolition project activity.

Wyatt's development continues to move forward in leaps and bounds.  He is wanting to stand at every convenience;  although he can't quite get there from a full sit, he can stand up from sitting on a stool and when placed in a standing position is quite content to stay there.  He loves this new view on the world a lot, actually.  If I'm on the floor he will crawl over and half crawl up my arm.  I'll help him up and he will causally look around and survey his kingdom.  More often than not however, he will lean in and put his head on my shoulder.  He'll often sigh in contentment and snuggle in even tighter, sharing this new thing with me, his feet firmly planted on the ground.

He had a Speech and Language assessment a week or two ago where we set have a whole new list of language goals.  He continues to sign and say "dada" and "dah-dee!" but Mama is still a no go (except for that one time...).  That is, until the speech therapist pointed out to me that he says "baba!" a lot and asked about his ears.  It's possible, if there is fluid in there (remember all that a few weeks ago?) that he cannot hear the "M" sound properly and is repeating it as "B".   If you watch yourself say both in the mirror, there really isn't much difference.  He has been saying Mama, in fact it's his most common word.  I just wasn't really hearing him.  He's still using his own sign for "parent" and he uses it for both of us.  Instead of touching his thumb and spread palm to his forehead (where he signs "Daddy"), he taps it on the top of his head.  We're continuing to work on "more" and "thank you" and a few more signs.  He can say "tah-doo!" when you hand him things, so he is already giving us his version of thanks.  They were impressed with his sudden leap in activity;  we just can't discount the effect that his VSD closing has had on his overall ability.

It may seem to the uninitiated that Wyatt cannot communicate well, as his words/signs are limited compared to say, his chatty twin.  I want to banish this notion completely as no one that meets him seems to have an issue understanding him.  The other day for example, he did something that was pretty remarkable.  We have a small dresser in the living room that holds things like wipes and diapers and movies and things.  Zoe has discovered the bottom two drawers and routinely likes to pick up toys/random objects and hide them in there.  Lately, Wyatt has emulated her, which has resulted in some pinched fingers here and there.  We were all in the living room and I turned around at the sound of Wyatt crying loudly;  he was holding up his hand for me to see.  I asked "What happened?" and still crying, reached behind him, placed his hand on the drawer, snatched it away like it was hot and cried louder.  He had perfectly mimed getting his hand caught in the drawer.  A quick assessment and a few kisses later, all was forgotten.  We've both learned a valuable lesson with this:  he, not to play with the drawer and I have been made more aware of just how good his communication really is.  His twin sister, who can talk, has done the same thing and cried so hysterically that she could not be understood for a few moments (and needed much calming down afterwards).  He on the other hand, quickly and efficiently conveyed what the problem was and went right back to playing after being comforted and validated.  Sha-ZAM!  That's m'boy.

It seems that Zoe is the latest one hit by Cough Until You Puke.  I was awoken groggily a few times by the sound of her coughing during the night, but it was Wyatt who brought it to our attention.  After a long hack session about 4am, I heard a telltale gag and immediately Wyatt started to cry.  I stumbled into their room to find a bewildered Zoe in a mess in her crib with Wyatt kneeling up against the rail of his crib, obviously distraught at the state of his sister.  I flicked the light on and started about the business of stripping her bed while Sean popped her in the tub.  Wyatt was pretty patient for a few minutes, as he sat with one eye open, but had obviously had enough as he eventually reached as far as he could to snap the light off before laying down again.  I laughed and went across the room to turn the lamp on, to which he groaned and sat up again, grumpily.  His language could not have been clearer if he had actually said "What the hell, guys?  I'm TIRED!" 

I guess it is time to finally drop his crib down as he can now open the door.  We are used to leaving their door open a crack, to help with air circulation and whatnot.  Sean got up very early one morning to use the washroom and in walking out of our room, noticed the door of their room open.  He thought "What the...?" and in walking towards to investigate, a little head popped up over the edge of the crib and squealed good morning.  We figure Wyatt was able to grasp the edge of the door and flung it wide, in the hopes of seeing one of us.  We started shutting the door at naptime that day, only to hear what sounded like the doorknob rattling shortly thereafter.  He is unable to get out or fall out of his crib still, but to be safe, I think it has to drop down a level.  That will be a big milestone for us, as he is definitely no longer a baby, instead he is very much a little boy.


Life goes forward, regardless of things like surgery dates.  Although April 3rd crouches in the corner over there, I am aware of it and regard it warily in my peripheral vision.  My concerns are not really based on the procedure itself, but rather all the planning and preparation involved and other intangible Mommy-like things.  It is comforting to know however, that when the fear starts to grow and loom in the shadows, I have many things that bring me comfort and stop it in its tracks.  My kids.  My goofy husband.  My friends, both online and IRL.  My colleagues (of all stripes) who banded together to let me know that they were supporting us with our upcoming journey and the individual ones that have approached me since to offer private words of encouragement.  With all of this I may just muster the courage to look it directly, maybe even extend a finger or two.  Maybe, if I remain still enough, a well placed pst-pst-pst can coax it out into the light.

  Don't forget to vote for Down Wit Dat - The Group as Favorite Special Needs Online Community!  

Community Pride

Once more, I would like to interrupt this blog for a special announcement...

Down Wit Dat has been nominated for an award from About.com!  That's two years in a row!

You like us!  You really like us!

This year, we have been nominated for Down Wit Dat - The Group, the discussion forum for Down Wit Dat (our Facebook page) and @Down_Wit_Dat our Twitter Feed. 

Confused yet?  I probably should have been a little more creative with the naming scheme.

However, I am very proud of our mighty little online community and I am honoured and thankful to whoever took the time to nominate us.

You can vote once a day, every day through March 19th. 

About.com's Readers' Choice:  Favorite Special-Needs Online Community Voting Here!

Congratulations to all the nominees!

We will now return you to your regularly scheduled blog...

Breathe

I played the fool today
I just dream of vanishing into the crowd
Longing for home again
Home, is a feeling I buried in you
I'm alright, I'm alright
It only hurts when I breathe
And I can't ask for things to be still again
No I can't ask if I could walk through the world in your eyes
Longing for home again
Home, is a feeling I buried in you
I'm alright, I'm alright
It only hurts when I breathe...

--Melissa Etheridge, Breathe

If you haven't figured out from the blog titles or the song lyrics interspersed throughout my writing, music plays a big role in my life.  It is high on my list of coping mechanisms and the soundtrack to my life, contrary to my rocker exterior, is quite varied.  As I've said before, music is magical;  it can make your soul soar to the heavens and then hurl you to the depths of despair.  It can create a mood, it expresses what the tongue or pen often cannot.  If you're like me, you will often find yourself struggling to grasp a thought or feeling when along will come a piece that will make you say "Yes!  Exactly!"

Melissa Etheridge did that for me once.

Two years ago yesterday, as I was wrestling with the news that my unborn son had an AVSD and a very high likelihood of a chromosomal disorder, I listened to a lot of music to try and remain calm.  As hysterical as I wanted to be, I had to remain calm for all three of our sakes. I also had to let a whole bunch of people know that my naive little bubble had popped.  All was not well with my pregnancy, all was not well with the health of my babies.  So much so, that the pain of it all permeated everything.  Every task I completed, every moment, both awake and asleep seemed saturated with this new development.  As I struggled to maintain my composure, to pretend that it was all no big deal, it all had to come out somewhere.  It hurt, seemingly, with every gasp that I took.

So, I published a "note" to Facebook for all my friends and family.  The reach was a bit larger than I was comfortable with, but that was the price I had to pay for not seeking out those closest to me one by one.  Entitled "It Only Hurts When I Breathe", stealing a lyric from Melissa's song that I had been listening to as I wrote, I brought everyone up to speed, fast. Two years later, as I reread those words and summon up those old demons, I'm struck at how far we have come.

Almost two years later, I have three reasonably healthy children (Boogie Wonderland/Expectorate Boogaloo aside).  We are waiting for the pre-op appointment for Wyatt's heart at Sick Kids and there are some appointments in the next month, but other than that, it is business as usual. 

In those long, sleepless nights before and after they were born, one of the things that I worried about (aside from the myriad of other things) was their "twin bond".  As a culture, we like to mysticise this relationship, but the truth is that it exists and no chromosomal differences are going to interfere with it.  My twins, despite their physical differences, still play together.  They roll over each other like puppies and protest when one steals the others toys (it goes both ways, trust me).  Wyatt has learned to hold his own and will shove and pull Zoe down when she annoys him.  Here's a video I shot this morning of them fighting over the dinosaur.  You'll see Wyatt hold his own and voice his protest a couple of times.  You'll also see him tickle her foot and her to talk directly to him once or twice.


Wyatt and Zoe Fighting Playing with the Dinosaur
They are also very aware of the other;  when one is upset and needing comfort, the other will most likely seek some too.  Wyatt managed to pull a lamp down on himself the other day;  I had two crying toddlers in my lap for the better part of half an hour afterwards. If Zoe wakes up first in the morning, you can hear her trying to wake her brother up.  Once awake, the two will "talk" back and forth to each other.  This used to be very rudimentary with babbling, but now that things are getting more sophisticated, there are some words thrown in here and there.  I cannot describe how beautiful it really is.  Watching them play together despite their differences is also a thing of beauty... a fleeting thing, but a thing nevertheless.

Playing nicely together.  A moment later, chaos resumed

Overnight, Zoe has gone from "baby" to "little girl".  A goofy little girl that is smart as a whip and makes me want to squish the stuffing out of her even when she is driving me insane.  She toddler giggle-word salads her way through the day with the occasional crisp sentence where you least expect it.

Where have I seen this kid before?

Oh.  Right.

Wyatt is still developing strong.  He practices his kneeling whenever he can.  We are also working on his standing, but it isn't independent enough for me to get a shot of it yet.  He's popping out molars at an alarming rate and not surprisingly, is more exploratory with food.  He's also shoving it in as he has gained a lot of weight since his last check up.  Zoe has traditionally weighed at least a pound or more than him, once she caught up to him at the three month point.  As of this afternoon, he weighs 5 more ounces than her.

Born:  4lbs 1 oz, now 25lbs 7 oz

Born 4lbs, 13 oz, now 25lbs 12 oz.  Boom!

Somewhere, along the way, things stopped hurting so much.  When you look at my babies now, it's really not that much of a stretch.  Most of it seems silly in a way.  I know that meeting him in person blew a lot of doubt and insecurity away, but the learning and experience I have gained since then are the reason that Wyatt's differences stopped being such a big deal.  The people I have met, both virtually and in real life, have helped me along.  Soon we will learn the details surrounding Wyatt's surgery and after that is over, I will finally exhale, deeply and with conviction.

Today, we are more than "all right".   That pain is gone... and in it's place is a bustling, busy little family that I am blessed to be a part of.  New pains will come.  There is a big one in the wind.  Until then however...

Breathe. 

Comfort In the In-Between

Being the 7th of January, it's more than time that I write something for the new year, don'tcha think?

But what to write?  I'm in the enviable position right now that there is nothing pressing on my brain pan, as eager to get out as a golden retriever pup into the first snowfall.  Things are quiet again.  Things are in-between again.  I have a list of people that I have to call today, of appointments I have to make.  I'm tempted to leave it until tomorrow, just to have one more day of in-between peace.

That's not to say that things aren't happening around here right now, because they are.  Both babies are rapidly becoming babies no longer.  Each new day brings new things, new masteries.  There is a lot I can tell you about teeth and four point crawling and self feeding and new discoveries and talking and the task of switching them both over to a new size... and I will, rest assured.  Just not right now.  I want to stay in the in-between.  Its relative quiet is soothing right now.  After the hectic holidays and over two months of sickness and working through the New Year, you will permit me this little self indulgence.

There is still a lot to consider here in the in-between.  It is a softer place than others, full of things like gratitude and remembrance and reflection.  There is little "tasking" like there is in other places and a lot more awareness.  Like this morning...  Normally, Miss Zoe is a whirlwind of colour and noise by breakfast;  unfortunately our little Zornado had a restless night and woke up several times.  I'm not sure if it was bad dreams or what, but she resettled herself each time.  Sean carried them both downstairs for breakfast sometime around 10 am this morning and standing Zoe on the kitchen floor, started about the job of buckling Wyatt into his chair.  Zoe disappeared upstairs in a flurry of little bare feet and returned shortly afterwards with her blanketbunny and tookie (soother).  Normally, they reside in her crib during the day;  she happily flings them aside to get a running start on the day.  Not today.  Bunny had to sit near her at the table and once breakfast was finished, she curled up with us on the couch.  Still in her jammies, her eyes wide and her fingers entwined in bunny's familliar softness, she rested, watched TV and had a quiet morning with us. Wyatt took up the assignment of tearing the living room apart on his own, but for a few hours we spent an almost magical sweet time with our little girl.  She has since regained her energy and her almighty screech, but for a bit I got to snuggle with my girl without her restless squirming.  I got to consider how long and beautiful (and how unlike mine) her eyelashes are.  How very big she is, yet how small and delicate her features still are.  How perfect each little one of her "toesh" are, even if she does have her Dad's Fred Flintstone feet.  A camera was no where at hand to capture this time, so I only had my mind's eye to freeze this morning forever.  It's certainly not as reliable, but I'm hoping in my twilight years that some of this will remain, when so little else will.

As we cuddled on the couch, Zoe occasionally sighing as I stroked her hair, Wyatt surprised me with his determination.  In his crawling around the floor, he had arrived at a point where the coffee table blocked his view of the TV.  He heard Super Grover come on and instead of attempting to crawl over to a better vantage point, pulled himself up to a high kneel on the coffee table and shoved all the toys out of the way to get a better view.  I started laughing, almost dislodging Zoe who was curled up in my lap.  His solution was elegant in it's simplicity and he smiled,  his chubby elbows bracing himself on the table as Super Grover showed up for another awkward adventure.  He has come so far in the last few months, despite the rounds and rounds of viruses and bacteria that have sapped his energy and impacted his ability to breathe.  I am grateful to see the spark back in his eyes and the impishness back in his grin.  I am grateful to see that his ears have become unblocked and other than the discomfort of growing teeth, is returned again to health.

My eldest had become a little house happy over the Christmas break.  I think he was as relieved as we were to return to school this morning, to see his friends and return to a routine that involved more than meals and bedtime.  He'll turn seven this spring... all angles and coltish, he amuses us every day with his "awesome dance moves" and "beautiful singing voice" (his words).  He is kind and artistic and scientific and everything I would ever imagine I would want him to be.  Even when he leaves gobs of toothpaste in the bottom of the sink or "art" all over the house.

Before Christmas, Sean and I found ourselves having a shared moment of thankfulness.  We had gone out early to do some Christmas shopping and although we had fed all the kids and deposited Quinn at school, we had neglected to look after our own needs.   We stopped at Tim's, grabbed a breakfast sandwich and some coffee and plunked ourselves down at one of the tables in the sectioned off area in the mall and began to wolf our breakfast.  The twins were in the stroller and were given a Timbit or two to nibble on.  I was finished my sandwich when I looked up and nodded to Sean "Look.  Twins".  A couple was wheeling up to the Timmies kiosk with a huge double stroller complete with baby buckets and lots of blankets... the tell tale signs of new-ish little ones.  The Mom saw our stroller as they were wheeling up and called out to us "You have twins too?".  We smiled back and the inevitable twin parent conversation ensued.  While her SO waited in line, she leaned on the mini wall and we talked about our kids.  She looked like any other twin parent in the first year:  exhausted, unwashed, rumpled and in great need of adult conversation.  I was briefly shocked when she asked me "were there any complications?", and nodded that yes, they had spent some time in the NICU.  I held back Wy's heart issues and DS as I didn't want to scare this new-ish, still exhausted Momma; although there is really nothing scary to me (and you), being in the know, it's a bit unsettling to some people, especially complete strangers.

As it turns out, this Momma needed this conversation much more than I had thought. 

Her twins, a boy and a girl, were nine months old at the time of this meeting.  Although they were born at the same hospital as mine, her son was whisked immediately to Sick Kids.  He has Situs inversus (mirror organs) and had a few complications that went with this (although he was much better now).  Her daughter had difficulty breathing and a few abnormalities, such as a cauliflower ear and a few other things, such as an umbilical hernia.  They were in two different hospitals for months.  I could empathize a bit with the NICU stay, with the worry and having to quickly get your head around new and seemingly frightening things.  I told her, as we sat in our island in a busy mall at the height of the Christmas shopping season, about Wyatt, his heart and his extra chromosome.  She flinched, like everyone else does when they hear the words "Down syndrome", but at my casualness, my son's adorable chatter and the recognition that both her still tiny ones too had delays ahead brought her around quite quickly.  I also think that watching us have a relaxed coffee together also calmed her a bit and gave her a bit of hope for the future.  The first year of twins can be hell;  you don't fully understand that until you are in it and you don't understand how far you have come until you are on the other side of it.  We took our leaves and as we strolled up the length of the mall, Sean and I talked about our chance twin encounter.  We both were of the mind that we were very very thankful... that both our kids had been reasonably healthy, all things considered (AVSD's, chromosomal disorders and inguinal hernias aside), that our NICU time was reasonably short and that we had reached the point of being able to savour a cup of coffee, on a reasonable amount of sleep, before spoiling our kids at Christmas-time.


There is a storm coming, that much I know.  I can't see the clouds gather yet, but it shimmers, like a migraine aura, on the periphery of my vision.  This year, although one of great promise, will still hold some darker times for Team Logan.  That's not a subject for today either, here in our in-between.  What we do have is an appreciation of certain parts of 2012.  This blog, its growth, its accomplishments, its wonderful fans and yes, even its critics. I am thankful for all of those who read weekly and share some of the things that I put down here.  I have been doing this for almost two years... that is another passage of time that causes me to shake my head in disbelief.  January 13th is the two year anniversary of my first post, recounting another storm, namely my son's in utero AVSD diagnosis.  Soon it will be their second birthday, if you can believe that either. 

Here in the in-between, there is comfort; security. Despite what is coming, the sun is still shining here and it feels warm on my face.  I am acutely aware of my many blessings and my surroundings, as I sit here and write. I'm aware of my coping mechanisms too, as I wear a Hawaiian style shirt and flip flops with my khaki's rolled at the ankles while the reflection of a Canadian winter wavers ever so slightly on my screen as I hit each key.  There is thankfulness.  There is much gratitude.  My daughter and I are very alike, as I wind my fingers through this time and settle with it's familiar softness.  2013 has started with contentment.  There's a lot to be said for that.  I will excuse myself for the time being however as there is a little girl with a bunny who is gazing up at me with dark pools for eyes as she puts her head on my knee.  There's another little one behind me making clear "lalala" noises at some of his favourite toys; yet another sound that will raise eyebrows with his workers.   I think those phone calls will wait until tomorrow.  The in-between is much more promising for today.