Friday, December 31, 2010

Auld Lion Syne

Ever caught a train on the London Underground or the subway beneath New York?

I’ll never forget the first time... I stood fidgeting on the platform, eyeing the yellow stripe on the concrete edge that divided me and certain death on the tracks. Then, like a 120km/h jabberwock, the train burst from one dark eye of the tunnel and rushed past the platform, sucking at my clothes and yanking the breath from my lungs.

That’s what it feels like today; the tail end of 2010 is sprinting down the tracks.

Whoosh, indeed.

HIGHLIGHTS OF 2010

Special needs nursery school: by far the best decision we’ve made for Travis – and to think, we actually took him off the sacred Waiting List at one point (I blame the doubt gremlins, you know how they like to boot-kick your mental hamster right off its wheel). There is a sign by the front door of Wiggles & Squiggles that reads “Welcome to a school where miracles and possibilities surround you”. I have evidence of this, just look at these pictures that came with Trav’s end-of-year report!

The ‘big boy’ bed: in March, our Travis threatens to explode out of his cot like the Hulk, so he graduates to an adult-size mattress... on ‘Ground Hero’, which is the opposite of ‘Ground Zero’. After all, when your entire world takes place at knee-height, it’s best to stay grounded, neh?

Travis the Lionheart visits the prosthetics magician, Dr Gagick, whose thick eastern European accent makes me feel like we’re in the hospital tent at the Russian front in World War II. Hilariously, we leave with a blue-and-purple foot splint for Travis, which Uncle Phil informs us is Russian snow camo print. Also, Travis gets giant orthopaedic ‘tekkies’ which we call his astronaut shoes. They only cost R1700 a pair.

(Wiggles & Squiggles parents, if you are reading this, how about we start a Classifieds club for these outrageously expensive shoes, and other aids and equipment? They cost a fortune, and our kids grow out of them lightning fast!)

Feeding tube, thwarted! Roundabout July, Travis goes on his worst hunger strike ever, and his endocrinologist, action hero Dr Segal, informs us that if the Lionheart doesn’t put on weight by his next appointment, he’ll have to have a feeding tube inserted. After weeks of stress, desperation and a feast of unwanted toddler meals for Soapy the Labrador, we got Trav’s weight up. Full cream yoghurt from Woolworths – just throwing that in there...

The toilet cake: for the Lionheart’s birthday in August, I learned that watching several episodes of the Cake Boss on Discovery channel does not make me a plastic icing sculptor. What should have been a giant carrot cake with cream cheese frosting in the shape of Trav’s favourite toy – the washing machine – turned into a cinnamon-flavoured goop that was thrown in the trash, followed by an emergency vanilla sponge ‘stunt’ cake decorated to resemble something that looked more like a toilet than a Speed Queen.

Our blog is nominated as a top 10 finalist in the Best New Blog category of the 2010 South African Blog Awards. (And the world discovers that Stacey Vee’s happy dance is done to the tune of the Hot Dog Song from Mickey Mouse Clubhouse. “Hot dog, hot dog, hot diggedy dog!”)

Travis makes his stage debut in Where the Wild Things Are, his first school play. He manages about five mins of stage time, before the cacophony of musical instruments gets a bit much, and the Lionheart does an early exit stage left. He looked magnificent in his costume!

A visit to uShaka Marine World on my 30th birthday in October reveals that Travis is hypnotised by the fish tanks. He presses his nose against the glass, watching sharks, manta rays and jelly fish float past. Santa Claus receives a letter suggesting that the Lionheart might enjoy a fish tank for Christmas, and sets his elves to work. Meanwhile, that same day, Travis cultivates a five-star chocolate milkshake moustache when he drinks from a cup for the first time.

An ode to Lindt: perhaps not surprisingly, living in a politically charged country, Lindt the dictator cat went missing late October – presumed assassinated. Lindt, an indiscriminate killer of creatures both feathered and scaly, and equally indiscriminate ‘cuddle slut’, probably met her end while stalking our violent neighbour’s birds in his yard. I still remember her black kitten paws reaching out from the mesh cage at the SPCA three years ago, mewling “Pick me! Take me home with you!” She is sorely missed.

The Sugarbean Express: for a couple of weeks in November and December, it seemed the Lionheart would have a sibling. It was not to be, not just yet anyway. Reading through the posts here, here and here, I knew instinctively something was wrong. Soon, my little bean, soon...

After two years of resistance, we introduce Travis to behavioural meds in December – Risperdal. It hasn’t been the ‘miracle drug’ we hoped, but the Lionheart’s sleep patterns are approaching normal, his unpredictable moods are stabilising, and he’s more responsive and open to activities. Baby steps...

Dear readers, thank you for all your emails, comments and support in 2010. The Lionheart family has made new friends around the world; your kind words and advice make a difference in our home, and we hope sharing Trav’s stories make a difference in yours.

Next up: New Year’s resolutions!

Saturday, December 25, 2010

Twas the night before Christmas




The Lionheart's bedroom, before and after...
  

“Twas the night before Christmas, when all through the house
A small creature was stirring, much larger than a mouse...
The midnight bum-slider took to the floor tiles, and shared:
‘When I get back, my old bedroom better be there!’”

Special needs parenting lesson #237: do not attempt to re-arrange your autistic three-year-old’s bedroom on Christmas Eve. Even if it’s because Santa has just dropped off a 60-litre fish tank plus a fancy set of shelves for Nemo’s new pad to stand on. This is a rookie mistake.

Since we started Travis on the Risperdal, I have slept like a baby. This is because Travis has slept like a baby.

Unfortunately, neither Santa Claus (my husband) nor Mrs Claus (that would be me) got much sleep at all last night. Instead of taking strategic bites of the mince pies left out on a plate, and glugging half the token glass of milk in the early hours of Christmas morning, I had a half-asleep-awake-asleep-awake Lionheart digging his fingers into my arm each time his eyes flew open in terror, because something was Just Not Right in his bedroom.

Sigh. What were we thinking?

I’m encouraging the Lionheart to spend as much time in his room the next few days, building up some good vibes. I got through a third of his favourite Peter Rabbit pop-up book earlier today before he scooted nervously out his bedroom door. There are no fish in his tank yet, so there’s no coaxing him to stay in his bedroom to watch them swim about. The fish are arriving in a few days; a friend has gifted our Trav with five Malawis – I’m guessing they look like this. Can’t wait! I should perhaps note here that I know as much about fish tank maintenance as I do about landing a Boeing 747.

Our first family Christmas at home is proceeding like an all-you-can-eat sunset cruise floating lazily down the Smorgasbord Riviera.

Last night I made a trifle with layers of Madeira cake soaked in sherry, peach slices, cherry and orange jelly, brandy custard and double cream. We had toasted croissants, topped with smoked trout and creamy scrambled eggs. And as I’m typing this a cranberry-and-port glazed gammon and large chicken with pork-and-herb stuffing are filling the house with mouth-watering smells. Morne is making his famous roast potatoes, and our Christmas lunch is rounded off with rice and cauliflower with white sauce.

My butt ballooned by 2kg just writing that. Better put on my stretchy pants.

What is missing is the wide-eyed wonder of small children ripping open presents beneath the Christmas tree. We have all the right ingredients: a toddler, a tree and presents. Alas, even though the Lionheart is three, he still doesn’t understand any of it. Sure, Morne and I could plaster on the too-stiff smiles and pretend that Travis DOES know what’s going on, and then ho-ho-ho through the charade of opening presents, lighting candles, singing carols and talking about what a smarty pants Santa is for figuring out that the Lionheart really wanted a fish tank, the clever old codger...

Realistically, this kind of behaviour would leave Travis bewildered and “bedondered” – which is an Afrikaans word to describe the terminally grumpy, for my international readers.

So we are free-styling this family Christmas thing. What Travis knows is that there are plenty of cuddles going around, new toys have materialised from underneath all that delightfully scrunchy paper, the house smells delish and this afternoon holds the promise of two hours splashing about au natural in the swimming pool (none of the Lionheart’s swimming costumes fit thanks to his recent growth spurt).

I’ve been taking photos all day, which I’ll post soon.

Monday, December 20, 2010

The alchemy of grief

What does one write about after so publicly sharing a loss?

I have plenty of material. It’s Christmas, the first one the Lionhearts have ever spent at home as a family. I could talk about how Trav’s new behavioural meds have turned him into a somnambulant koala for approximately 12 hours of the day (8pm to 8am). Or that I’ve heard that Santa is bringing him a fish tank for being such a good boy this year.

What I’d really like to write about, is alchemy. This, for those not historically inclined, is the 2500-year-old (presumably unsuccessful) practice of turning base metals into gold.

Travis the Lionheart is an alchemist. He’s the real deal.

Since I came home without the Sugar Bean on Friday evening, he’s transmuted my grief into something decidedly more wondrous – awe. I know that my husband feels the same.

Rolling and giggling on his mattress, I look at his toes... and there are 10 of them. The right number. They have the finest creases over each knuckle. The way the nails on the second toe of each foot tend to curl under a little... it’s not weird, it makes me smile. Even his right foot, and his ankle that caves in painfully when he puts his weight on it, foot splint and all – it is beautiful, too. Those skinny ankles... the undeveloped calf muscles...

Every time the tears threaten, I sit down next to my Lionheart and lose myself in the beauty of his thick, dark eyelashes.

Travis, you are perfect.

I said it, that word I promised never to use to describe any child. It’s a Christmas miracle.

Saturday, December 18, 2010

The evacuation

It happened so fast.

At 11am my friend Amanda phoned to say that she’d called in a favour, and our gynae could see me today (I’d been struggling to get in an appointment before Christmas). By 7pm, I was on the couch at home. Bean-less.

I’d like to say that everything that happened during those eight hours is a blur, but alas, I am a writer. The detail is etched in 1080p hi-def adjectives and metaphor.

My doctor knew immediately something was wrong. “Are you sure you are 10 weeks pregnant?” Yes, doc, I have the blood test results and the 8-week scan from my GP right here. “Let’s take a closer look...” Uncomfortable trans-vaginal scan ensues. “Over there. See how the foetal sac is elongated. I’m not seeing enough development.”

And there you have it. No heartbeat.

“I’m afraid this is a miscarriage, Mrs Visser,” he says gently.

My doctor called me Mrs Visser all day – which caused no end of confusion at the hospital. It’s Mrs ‘Venter’ by the way. Friends and family sweetly indulge my insistence that I write under ‘Stacey Vee’.

Doc explains that this type of miscarriage is quite common when you’re 30 and older. One in six (which seemed a ludicrously high statistic, until many of my Facebook friends last night commented that they’d been through the same thing). It also has nothing to do with my difficult pregnancy with the Lionheart and his brain malformation.

Let’s start with the word ‘evacuation’.

I’d always thought this kind of medical procedure was referred to as a DNC, which immediately makes me think of Run DMC, the hip-hop group from Queens who were so popular in the 80s. This morning’s research tells me that I suffered what is known as a ‘blighted ovum’, which could have been caught much earlier, and the removal procedure is actually called a D&C, which stands for Dilation & Curettage.

But that’s not what they REALLY call it.

It’s called an ‘Evacuation’. From the doctor’s reception room, to the hospital admission, to the pharmacy, to the maternity ward, I had nurses and hospital staff sternly mouthing “Evacuation!” into telephone receivers and scribbling it on plastic wristbands. It seemed so ridiculous. Like I was in the midst of a fire drill or a hostage situation... the latter of which, I guess my womb actually was.

It’s also good to know, should you ever have this unfortunate experience, that you are booked into the maternity ward. As I walked in, a proud mom was wheeling her bundle of joy past me in those transparent baby beds you see in the commercials. In my ward, the bed next to me was surrounded by “Congratulations, it’s a girl” balloons and pink flower arrangements. The mewling of newborns echoed down the corridor.

You would think that this would be a knife through my heart, but no. I only felt guilt.

I felt guilty that the newly pregnant girl in my gynae’s waiting room had to listen wide-eyed at his receptionist (bless her) loudly make arrangements for me to be booked into hospital for an ‘evacuation of the uterus’. I felt guilty that the fresh-faced mom in the bed next to mine in Ward 8 had to hear my gynae tell me “There’s nothing you could have done”, and then after the operation, listen to me take all the phone calls of sympathy as they rolled in.

Another of the challenges of being a special needs family is that Morne, my husband, wanted desperately to be by my side. But he needed to stay with the Lionheart. I insisted. I allowed myself to cry just the once yesterday, when Morne came to my hospital bed for a short visit. I am married to a Camel man poster boy, but we both sobbed. To have a first-born with special needs, then lose your second child this way (or the idea of a second child). It’s cruel. The Lionhearts are a resilient tribe, though – we bounce like tiggers.

I made that trip down the sterile hospital corridors, the lights flashing overhead, alone. I was terrified, but I did this solo for Travis, because he needed one of his parents. I didn’t want him dumped elsewhere. Amazing the wells of inner strength you discover when you become a parent.

That blasted 12-week Rule! Let me tell you something. Every phone call, every text, every message of condolence on my Facebook wall has made me stronger. If I’d listened to that ridiculous rule, and only told everyone about our Sugar Bean at 12 weeks, I would have woken up this morning with puffy, crusty eyes and a black hole behind my ribcage that sucked all the light in. But I didn’t. I am strong today, optimistic, bolstered by the love of my family, friends and followers. I opened the curtains this morning and drank in the sunshine. I cannot thank you all enough.

Amanda Rinken – who was with me at the gynae, booked me into hospital, and stayed by my side when my husband could not be there – you are going straight to heaven. My family: mom and dad, my siblings Gisele and Rowan, Bev and Ron, Yvette and Eddie, and my cousins Nikki, Kelly, Michelle and Kathrynn. My in-laws: Mom, Dad, Michelle and Philip. I felt your love around me yesterday.

All the messages I received from friends and extended family yesterday. Bless you.

And my husband: to the moon and back, my love.

Sunday, December 12, 2010

Report cards, Christmas trees and zombie watch

Good news! The Lionheart’s end-of-year report has plenty of 1s! And in other news: at the Trav’s special needs nursery school, 1s are at the bottom of the scale.

Here’s the chestnut... I find, to my well-endowed-Type-A-over-competitive-astonishment that it doesn’t bother me in the least. That’s what has really taken me by surprise. Not that my Lionheart still has plenty of skills that he needs to master, but that I ‘have his measure’ so to speak. I know what my special needs first-born is capable of, I accept and understand his limitations, and I can measure his progress realistically.

This is what Wiggles & Squiggles taught me, the parent, in 2010. How to manage my expectations.

Reading his report a second time this morning, I have tears in my eyes when I come across a 3 or a 4. Listens to stories! Explores with sounds! Turns pages of a book! Makes deliberate marks on paper! Puts objects in a tub! Quietens when music is played! Sits at table for a meal! Looks for familiar adults! Shows developing concentration!

In January this year, Travis the Lionheart had none of these skills.

(The scale is 1: Fully prompted, 2: Enjoys activity with support, 3: Skill emerging – not yet consistent and 4: Spontaneous/independent.)

Next year, Travis remains in the nursery school class with Teacher Sue and Thengi, which pleases me no end. Well done, my boy. Bravo!

Yesterday, we put up the Christmas tree. I’m having a very “Bree van der Kamp” festive season this year. The tree has a theme: purple baubles and tinsel, silver decorations and white lights. The Lionheart sat enchanted beneath the boughs when we switched the Christmas tree lights on, and then he noticed the shiny purple baubles on the lower branches and proceeded to swat them like those tennis balls that are attached with a string to a pole.

I’m also going to make home-made mince pies and cook my first gammon. Wearing high heels and pearls. Tra-la-la!

Okay, I’ll most likely be wearing a baggy top and stretchy pants.

ZOMBIE WATCH
Last night marked four nights since we started Travis on his behavioural meds, Risperdal. Apart from the first night, when he pulled another 3am wake-up call, he has slept extremely well. Down at 8.30pm and up at 6am or 7am. On night two he was whimpering in his sleep and I crawled into bed with him, torturing myself with thoughts of what chemical reactions could be taking place in his brain and if they were terrifying him, or making him feel dazed and confused.

In my early 20s I was on SSRI medication to control my panic attacks, and I know the symptoms and side effects these types of meds come with. Nightmares, dry mouth, shaking hands, involuntary jerking of muscles... I fear that because Travis cannot speak, he’ll go through unpleasant adjustments without me noticing. So I’m monitoring him, big time.

What I am noticing is less fluctuation between complete meltdowns and giggling uncontrollably – which I consider the two extremes of the Lionheart’s behaviour. Yes... watching your son roll side-to-side on the floor manically, giggling for no reason until he starts running out of breath 30 minutes later is disturbing, not cute or charming.

And I have yet to notice any “blanking” out, which is what I call zombie mode – and which means I’ll pull the plug on this little trial immediately. Keep in mind that with an autistic child, not making eye contact or turning your head to acknowledge sounds is normal behaviour. Travis is still “with us” in this case. By “zombie mode”, I am watching for when the Lionheart is “not with us”.

HOW’S THE ‘SUGARBEAN’ DOING?
Not much is happening with our Bean. It is early days yet; I am only 9 weeks and 1 day today.

I still live with the fear that something is “not right”. This will probably haunt me, even after the birth – and no amount of scans or tests will ease this paranoia until that first step or first word. Even though I have received many “Congratulations” and “I’m so happy for you guys”, I am feeling hesitant to leap into the excitement of re-doing the spare bedroom, purchasing New Born nappies, sobbing as I buy teeny tiny pairs of socks...

But chin up! I do believe that my emotional state affects the Bean, so I’m taking regular deep breaths and thinking soothing, loving thoughts, and patting my belly (slash fat rolls) affectionately and saying: “How are you doing today, Bean? Mom loves you already, just the way you are.” And I mean that.

Wednesday, December 8, 2010

Booger biscuits and miracle meds

I love this time of year. It’s not because I can hear the sound of “Jingle bells, jingle bells” everywhere I go (I think the shopping mall soundtracks are sinking into my consciousness by osmosis). It’s Travis that’s infusing our household with the Christmas spirit.

Dashing through the snow, on a one-horse open sleigh...
Sorry about that.

Look, I don’t think the Lionheart actually knows what’s going on. Santa Claus and Christmas trees and reindeer – that’s just mom blabbing away. Yap, yap, yap, presents. Blah, blah, blah, more presents.

Over the fields we go, laughing all the way...
Dammit! This flipping song.

Travis is coming home from Wiggles & Squiggles laden with baked treats. A bag of biscuits last week. This week some festive cupcakes wrapped in cellophane. All loving smeared with the booger-encrusted fingers of a class of enthusiastic toddlers in baking class. Boogers. BOOGERS! I look at these goodies, and all I can see is the Lionheart with his tongue halfway up his nose slurping some tasty mucus. Blugh.

Bells on bob tails ring, making spirits bright...

Okay, the last time Travis came home with biscuits he made at school, I ate them. I was starving, okay. Plus the blue icing and silver balls were awesome – no one decorates biscuits like that anymore. Perhaps the boogers gave it that extra little something.

What fun it is to laugh and sing, a sleighing song tonight!
Oh! Jingle bells, jingle bells...

Back to our regular programming. We’ve just come back from the Lionheart’s check-up with his neurologist, and we left clutching a prescription for a medication we hope will turn our frustrated, aggressive, biting, pinching, shrieking special needs child into a more settled, responsive toddler. Or a drug-induced zombie – which is my worst fear.

I’ve collected the Risperdal syrup from the pharmacist, who gave me painstaking instructions on how to measure the right dosage. From tonight Travis is officially on behavioural meds. Obviously this is not a decision we’ve taken lightly, if you’ll recall my earlier write-up. I’ll keep you all posted on his progress and response to the meds.

BUMP UPDATE
The weather is still balmy in Uterus land. “Bean”, which is what we’re calling the new one, is still playing havoc with mommy’s hormones. I’m holding thumbs that the morning-to-midnight sickness will pass soon. Other than that I’m feeling good and indulging my every craving. You know when you go into a pregnancy with a double chin, that the scales will take a pounding over the next few months.

Morne and I are determined to savour every moment of this pregnancy. We’ve also decided not to find out the sex until the big reveal in July, which will take some superhuman willpower.

Now, to the fridge!

Friday, December 3, 2010

Keeping secrets is HARD!

This post is being broadcast in close proximity to a porcelain throne. It is being typed with two fingers, while my other hand is preoccupied with feeding small sips of ginger beer to my face. Yes, dear readers, Travis the Lionheart will have a sibling in early July. I’d whoop for joy, if I weren’t cursing this surge of pregnancy hormones that’s making me feel so green.

Its early days yet, I’m only eight weeks in. I had my first scan yesterday, and all is well in Uterus town, inhabitants: 1. I’ve been struggling to keep this little secret until that mystical 12-week milestone when you are free to hire a small airplane and sky-write your happy news for all to see. Especially while writing this blog; it seems downright dishonest not to share what’s REALLY taking centre stage in the Lionheart household, over and above Trav’s antics.

I mean, I’ve spent the last week worrying that this is an ectopic pregnancy (sorry male readers, this is going to get gross... I was spotting a little, and it freaked me out completely). Thankfully yesterday’s scan with my GP ruled that out. Shew! Don’t I feel sheepish?

On the 12-week Rule, it has got me thinking. If you tell no one, and God forbid it turns out that there is something wrong... are you supposed to suffer that loss in silence? Don’t you need the support of your family and close friends more than ever? Obviously you don’t blab to everyone. But, isn’t a foetus a human being before 12 weeks? It has a beating heat and eyelids and fingers and everything by then. Come on.

Back to the topic of the day. Obviously, even though this is a planned pregnancy (imagine that), we are terrified. I just quit my cushy, full-time job for goodness sake! The Big Guy Upstairs has such a sense of humour... Waddling about with a ballooned tummy is not going to win me any new freelance clients. Luckily, I’ve prepared rather well for this leap into the unknown in my career, so we should be okay financially. It’s my new mantra: “We’ll be just fine. We’ll be Just Fine!” I hope.

Trav and his 3am wake-up calls have been exhausting. My energy tank is running on empty, what with the business of growing a human being that doubles in size every couple of days, so sleep is platinum-grade stock right now. The Lionheart rewarded my fast-dwindling patience last night by sleeping from 8pm to 6am, bless his little socks. Thank you, thank you, my boo boo!

We have to cope with:
  • The fear that something has already gone wrong with the New One’s development. After all, the Lionheart’s brain malformation occurred in the first trimester. Folic acid is my friend.
  • All the worries I expressed about raising both a special needs child and a ruggle (regular child). You know kids: they’ll find any reason to yell “I hate you” and run into their black-painted room, slam the door and play the most gawd-awful music of their generation at ear-splitting decibels.
  • How will I handle a hungry, crying newborn at 3am, when my special needs 4-year-old who can’t walk also wants “Up!” at the same time?
What next? There’s a Lionheart and a ‘Watch This Space’ in our Bath Tub? I'll have to give it some serious thought. But for now, I'm craving watermelon, orange juice, and an long afternoon snoooze.