Saturday, March 9, 2013

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.

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  1. Communication can only be seen as impaired if we confuse communication with a narrow set of arbitrary things, sounds and gestures. You are so right on putting that notion to rest.

    Other than that, hope the puke dries up soon. Meanwhile and afterwards, we're here for you guys.

    1. Thank you. We communicate in a myriad of ways. Words and gestures are only part of it.

      It's not a tummy bug per se, just a nasty cold thing that makes them hack a dry cough until they lose their lunch. Eldest had it for two days (the hack-puke part), so I'm hoping it passes soon. Thanks for the kind words and the good wishes.

  2. It's so hard to have this hang over your heads. I know. Remember what I said about holding your breath? Yeah, I did that a lot. Nothing anyone says makes the breath holding go away, but, talking about it, to the doctors, to friends, to family, random helps you process the fear a bit. It will be one very, very long day after a very, very long wait. But, just wait until you see how quickly he bounces back! Just remember to breathe... :)

  3. How brave of you to live the 'normal life' in spite of the waiting. Beautifully written.

    1. Thank you. It's the only thing I could think of...


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