HMB Camping

Having a camper van is like having a 2nd home.  You have to buy all this shit to put into it (though I admit that is wildly fun).  I feel like my carbon footprint is looking like that of big foot's.  However I just saved a 35-year old car from meeting the junkyard so maybe I'm stacking up my carbon neutral points too.

We camped at Half Moon Bay this weekend.  It's such a short drive from our house (about 45 minutes).  It's almost as if we never left home, except for the sleeping in a freezing car on the beach.

This baby cot, right above the front seats, is twice the size of her bassinet at home.  We sleep in a car and Niko gets an upgrade on her bed.  

Niko loved watching Mila fly a kite on the beach.  

Pulling Niko into my bed for a morning snuggle.  She was freezing cold but slept better than any night at home.  Maybe that's what I've been doing wrong at home, I'm forgetting the ice packs in her bed.  

I love stripy Niko against stripy bedding.  

The stuff that… uh-huh… Mila says

Mila:  Momma, Niko is over a year old.  Don't you think it's time that we teach her how to walk?
Me:  Well, I don't think that Niko will ever walk.  She' special.
Mila (frowning):  So I'm not special?
Me:  You are very special.  Niko is special too.  She is special-needs.

Later that afternoon…
Me:  Mila, we are about to meet momma's very good friend.  She is very special!
Mila:  Ah.. special-needs?

In fact, anytime I mention the word special now, she wants me to specify if something is special or special-needs.  How do I know exactly the level of appropriate information to explain to a four year old?  I don't want her to go around asking if everyone is special-needs.  We might end up walking out of many rooms with our tails between our legs.  However to hide everything about Niko is to set Mila up for big disappointment in the near future, and perhaps severe emotional damage.  What I am certain about is that Mila should understand that Niko is different.

Handbook of Discussing Difficult Topics With Young Children, where are you?  

Eyes and Heart

It was time for Niko's annual eyes and heart checkup.  I have nothing to report and I couldn't be happier.  Everything checked out fine.

I love this photo of her echocardiogram.  She was so calm.

We saw the same Zen Master who monitored her previous echo.  Niko seemed to recognize him, or his energy, right away.  He explained to me that if a child has a good experience with him upon the first visit, he/she will always have good subsequent visits.  And vice versa, if the child was terrified during the first visit, the child will freak out at all other visits.  Even if the patient is only a few weeks old on first visit, the child will respond the same way to him for all other visits throughout the patient's life.  And he's been specializing in pediatric cardiology for over 20 years.

He also asked me to notice the shifting of Niko's eyes when I laid her down on the bed.  He said, "I wait until I see, in their eyes, that they are settled down.  You see right now she is still scanning the room, meaning that she is not ready for me to start……. There.  Now she had recognized me, and she's settled into a comfortable space.  I can begin."  He was so calming that I was ready myself to curl up on the chair and sleep.

But look at Niko in this photo.  The room was dim.  There was a soft buzz tone all around.  There was a monitor with flashing lights of red and blue.  And a tender gentle man was rubbing her chest.  She was in heaven.  I did not even mention that she got three vaccine shots in her thighs just moments before this appointment.  She went from painful screaming to bliss.  This man must have a PhD in zen mastery.  

The Junkyard Wonders

Mila loves books.  She loves books so much that somedays she demands that I read 8 - 10 books to her in one hour.  Her book collection can reach the ceiling and back a couple times, if the books were stacked (and we have high ceilings).  So now we go to the library a few times a week to check out as many books as I can carry for our 8-block walk home.

I love the library.  So many books to read and we don't have to keep any of them.  We simply return them for others to enjoy.  What a great system!  Who came up with this wonderful public service?

I mostly select books by the illustrations.  They say, "Don't judge a book by its cover."  But that is exactly what I do… for children's book anyway.  A simple story can become alive with richness when accompanied by stunning illustrations.  A flat character can become nuanced and intriguing if drawn with flare.  Because I'm so naturally drawn by aesthetics in every aspect of my life, I cannot read a picture book if the pictures are unattractive.  Perhaps it's superficial, but when a book is poorly illustrated, the writing become coarse and second-rate in my eyes. 

The other day, I just grabbed a book as we were heading out, based on its illustrations of course.  When we got home, I read the story to Mila with Niko on my lap.  This is a favourite activity for the three of us.  The book is called The Junkyard Wonders by Patricia Polacco.  And suddenly I started to choke up.  I even heard my voice shaking.  I admit that I've become extremely sensitive since having Niko.  But nearly bursting into tears from a children's book?  

I had no idea that this book is about children with special needs when I grabbed it at the library.  It's about a gang of misfits, shunned by the "normal" kids in school.  They form strong bonds and experience excitement and sadness.  Some of these kids are diseased, some have tourettes, some are dyslexics, and some are geniuses.  This book was a surprising find.   

Living

If a grandparent, or parent, or uncle, or great aunt were diagnosed with a terminal condition and were told to have about three to five years left to live, one would say that this person is dying. Family and close friends would visit more often to spend precious time together to indulge in memories, to share stories, to relive grand achievements, and to celebrate this person's life.

Perhaps on the drive home,  the visitor starts to grieve.  The brave face he put on, just moments ago, starts to fall.  He is witnessing the deterioration of life.  He is witnessing attrition, collapse, loss.  He is waiting for the light to dim.  He is watching a loved one die, losing one physical ability at a time.  He is preparing himself for closure.

My Niko has a terminal condition, but she is not dying.  This is where perspective is my salvation.  We are told that she has a scant number of years to live, but her light is not dimming.  Rather than watching someone lose function slowly, I have a small round baby with unknown potential.

On the seesaw of doom, we somehow ended up on the raised seat, lifted high above the murky water.  I have the pleasure of witnessing Niko develop and learn.  I get to watch Niko acquire new skills and functions.  I get to watch her explore and find pleasures.  I get to have hope.  Will she learn to sit up?  Will she speak?  Will she roll over?  Will she crawl?  Will she call me momma one day?  Niko is not losing but gaining.  She is not fading, but growing.  I get to have hope in a child who is not dying, but living.        

One of Niko's new pleasures — hanging her right leg out of her stroller. 

Mila's number one fan

Ridiculous in pigtails?  Maybe. But she circumvented "hideous" and went right back to "cute".

Camping

We went on our first camping trip in our new (very old) camper!

I honestly had no expectations of getting this thing out of the shop anytime this year.  But after almost two months of work at Fred's Garage, this baby came home this weekend.  The cosmetic work will begin shortly.  But that will take time to track down all the perfect parts and to pick the perfect details and colours.  (This will be more fun than designing a dream house.)

So this weekend we jumped into our kombi and headed straight into the mountains.

I was so thrilled about driving in this camper.  While this vehicle introduced me to an orchestra of sputtering, choking, screeching, rattling, ka-booming sounds that I've never heard before, I really didn't care that we were being blown all over the highway.  The breaks were not really responsive and we hardly kept up with traffic, but I felt magnificent.  Each time we passed a reflective surface like a shop window or a shiny wall of glass, I was shocked to see our beautiful reflection.  Now I know how those gorgeous girls feel when they spot their own reflections and ogle at their lovely selves at every given chance….  "Oh ooooooh! who is that beauty?  Oh it's just me looking back at myself.  Hello hot stuff!"  When I'm in my kombi, I am vain and damn proud of it.

Taking a feed break at a rest stop.  Don't we look brady bunch?

Niko loved being in our Kombi.  She slept like a champ behind the mosquito net.  

The only thing that put a damper on things for me were the nasty mosquito bites that I suffered.  The worst one was just under my left eye.  The entire left side of my face swelled up, causing temporary sensory loss. 

Moreover I happened to eat something that resulted in an abominable rash all over my body (one of the worst rashes I've ever endured)… no part of me has been spared.  I have a horrible rash e-v-e-r-y-w-h-e-r-e!  I am having wild fantasies of riding on a mechanical bucking bronco made entirely of loofah.

But all in all, a damn good weekend!