Monday, March 21, 2011

Today is World Down Syndrome Day!

Today, March 21, marks the 7th anniversary of World Down Syndrome Day.   Click on the picture above to learn about this very important day, and to see some of the celebrations all over the world.   Today is a day to celebrate the strengths and diversity of people with Down syndrome.  

I've written and re-written a post about 100 times today.  I'm sure many of the people who read this blog can relate to my difficulties in writing on such an emotional day.   Really, where do I begin?  Do I write about the personal journey my family has had with Down syndrome;  a journey that began nearly 14 years ago?  Do I write about Paige herself, and the incredible young lady she has grown into?  Do I write about the many, many other children and adults with Down syndrome that I have come to know, and how each one of them has offered me beautiful and unique insight into life?   Do I write about the not-so-happy stories, of children in other countries, who are cast aside, left to die, or perhaps even worse, sent to institutions where they will live out their lives never having known the love of a real family?   And, of course, with that, goes the staggering statistics of our own "civilized" world - where in North America, some estimations are that nearly 8 out of 10 women who find out their unborn child has Down syndrome will chose to end that child's life, rather than welcome it into the world?

But, today is a day of celebration. And celebrate we should. As you can imagine, those of us who have been welcomed into this world of Down syndrome, through the birth or adoption of a child, or the addition of a new family member, or a friend's baby, or even though our interactions with an adult with Down syndrome in our community - today, well, we celebrate; we offer good wishes to one another.  We smile that knowing little smile that allows us to tell one another that we get it - we understand how it feels to have your heart open just a little wider - your joy-cup runneth over, and oh, how glorious that feels. 

Today,  I celebrate Paige, and her amazing life, and her amazing capacity to love, and find wonder in the world.  I can't get enough of this child.  My heart bursts open every single morning when she is still sleepy and full of hugs, and it fills with laughter when she points her finger at me, very seriously, and says my name, telling me so very much with that small gesture. 

And through her, and my love for her, my eyes have been opened to a whole world of people with Down syndrome.   Its like a force-field, a magnetic draw that pulls me in - where my best fantasies involve being able to spend all my days in a room full of children with Down syndrome - learning and growing, and shooting for the stars.  Oh, how we would celebrate when one of those stars were caught! I imagine my world to be aligned just so, just right so I could visit Reese's Rainbow, and bring a few children home, to fill my rooms and my heart to overflowing with 21st chromosomes.  

People with Down syndrome are as unique and diverse in their abilities and desires as people with the typical number of chromosomes are.  Some will soar, and run, screaming into the world, "Here I am!!  Watch me go!"  And others will do it a little slower, a little more quietly, tentatively feeling their way into a world that is sometimes a little scary, a little too big.

Today is a day of celebration indeed. 

I love someone with Down syndrome.

 I love a lot of someone's with Down sydnrome. 

Do you?

Friday, February 25, 2011

I May Have Predicted My Own Future

So with my last two posts, I entered into a sort of premonition/deja vu territory that I never felt the need to venture into. 

I have waxed poetically that if I were indeed a Superhero, I would surely possess the power to make time stand still, to be able to freeze moments of my life, and hold on to them forever.   And I have contemplated the fairness of the world;  knowing that I stand very much on the upside of the fairness scale - that if the world were indeed fair, I would have to be knocked down a few pegs while others less fortunate than I would rise.

A few days after those two posts, I should have created yet another post, titled "Be Careful What You Wish For."    Because my life sort of took that Superhero turn, and I slid a little on the "its not fair" scale.

On Superbowl Sunday, I was making cookies with Dakotah and had some sort of blip where I froze in time - dropped the cookie sheet I was holding, stopped talking, stopped laughing - literally just *stopped.* A few seconds later, after Dakotah had repeatedly spoken to me,  asked me to pick up the cookies I had dropped, and then started getting mad at me for not acknowledging her, I started again.    Just like that, as if someone had snapped their fingers, stopped me in time, allowed the rest of the world to continue, and then snapped me back into it.

Superhero powers indeed.

Several doctors appointments later, several tests later, lots of what ifs, and could bes, and maybes, and let's hope nots, it appears that I may have had a stroke that night.  There is a 4mm section of dead brain tissue deep in my head that shows it.   And lots of unanswered questions about what happened and why.  Without the classic risks of high blood pressure and high cholesterol, I'm deemed relatively low risk for such an event. 

With a bit of a colorful medical history of things that have happened in the last ten years, but have resolved themselves, or have been of such little consequence that we did not dig any furher into it,  there are lots of possibilities of what may have caused this.

My reaction to all of this has intriqued me.   First, I am strangely curious about how nothing it all was.   Nothing in a sense that I couldn't have comprehended before this happened.  I have no recall of that 15 or 20 seconds;  it wasn't like I was asleep and felt myself wake up,  I was very conscious that I had just stopped.  I didn't hear anything, see anything, feel anything.  There was just....nothing. Such a very strange feeling.   I guess I would have expected dancing bunnies or a bright light or something.  Instead, just an eery feeling that, for a few brief seconds, life went on without me.

And then, sitting in my dr's office, as he turned his computer monitor toward me, pointed at the screen with a pen, and said, "you've had a stroke."  I wasn't scared or upset or anything.  I was just...vulnerable, I guess.

Honestly, and it makes even me laugh to say this, it was like the first time in my life I've ever realized my own mortality.   It was probably the first time in my entire life of lives that I truly realized that I am *not* actually a Superhero, lol - that I am human, and faulted, and defective, and will, someday, eventually die, just like every human before me, and after me. 

I mean, how could that have never occured to me before?

In the wake of fearing something really sinister,  there have been a few "not fair" moments racing around in my head.    My children rely on me so much - and its been my greatest blessing to know that however faulted I am, they have always been able to count on me.    It would be very rough on them to lose that. 

And yet,  I am fully aware that the true question is not "why me" but "why not me."   My life is no more precious or valuable than any other.   As much as I think about how devastated the world would be without me, lol, I know that it would go on....I even had a momentary glimpse of that in my very own kitchen.

As the drama of the events are beginning to ebb away now, and its looking like there is at least something fixable going on,  I am again humbled.    I am incredibly thankful that perhaps what happened that night was a warning sign to me, a signal that something does need to be fixed, and now, I am on the path to fixing it.

So, while I am currently rethinking my wish for superhero powers that would allow me to freeze time,  I also remember how empowered I am as a person, again fueled on by the two true superheroes in my life - knowing that this is a blip I will get through, and one that will once again remind me to smell those roses while I still can....

Oh, and don't think I'm 100% human just yet - I'm still very much contemplating a hot pink cape flowing behind me as I conquer all these little challenges ahead of me.   Really, how rockin' cool would that be?!

I only hesitate because of the look of sheer horror on my 17 year old daughter's face when I knit my own fingerless gloves, or took out my "Party Naked" sweatshirt that I won in a contest at a bar when I was not so much older than she is now...

Thursday, February 03, 2011

"It's NOT Fair!"

Protests my oldest daughter when she is told she has to clean her room, put dirty clothes in the hamper, take care of the clean ones...before she can have the car for the night.

"Life's not fair,"  I answer back, not feeling particularly horrible for imposing such a terrible restriction upon her.

Hmmmm....that's quite a statement there, my girl. You are right - life is not fair.  Not often.  Maybe not even ever.  And thank goodness for that. She thinks life isn't fair because, well, because she is 17.  She thinks she has restrictions and rules and impositions, and that I, as the adult, do not.   She can't wait to be all grown-up so she can do whatever she wants, whenever she wants.  You know, like I do.

But, we only ever really utter the "life's not fair" credo when we aren't getting something that we want, or when life isn't going as we want.   When life is awesome, we don't scream, "This isn't fair!"  But maybe that's the time we should think about it the most.

I venture to guess nothing would humble us much more than comtemplating what true fairness would mean to us.  Even keeping the concept of living the 100 Mile Life - where we buy only local food, and support local charities, and attend local festivals, and virtually self-contain our lives within that 100 mile radius - even then, the vast majority of us should be on our knees thanking the Good Lord for making life "not fair."

As I type this, someone we know is recovering from a devastating fire that took her entire house, every possession she and her 14-year-old son have - all their photographs, all their clothes, the simplest items - socks, a toothbrush, everything, gone.   And a co-worker's infant grandson was taken to hospital this morning for an operation for pyloric stenosis.  A "routine" operation by most accounts, but when its your tiny baby - and you just found out it was going to happen hours before, it feels anything by routine.  So not fair.

And in that same hospital, no doubt there is a child who is struggling to live - perhaps one just diagnosed with cancer, or a condition that will end his or her life entirely too soon.  A moment has happened, and a family's life is forever changed.  Not fair, not fair, not fair.

A 70-car pile up in Montreal yesterday surely reminded many people of what is important to them, even as they deal with the hassle of repairing or replacing cars.  No one died, and for that, it was a good day.

Within a 100 miles of us, a homeless person will walk into a shelter, desperate for a warm place to sleep, a warm plate of food,  just as my 'not fair' girl has said, "yuck, we had that last night:" as I put the pot of homemade soup I made yesterday on the stove to heat for dinner. Not fair?

Within a hundred miles of us, perhaps tonight a marriage is ending, and with it begins a world of change for a husband, a wife, and their children.  And although it maybe the best thing that ever happened to their family, tonight, among the sorrow, they will struggle to see it.  And our family, for all its imperfections, and there are many, will be together tonight.  Not fair?

And within a hundreds miles of us, maybe someone is planning a second honeymoon to Italy tonight - a trip my family cannot even fathom at the moment.   Perhaps a teenager is getting a new car as a reward for a great report card.  So not fair, says my teen. 

Someone near us is surely falling in love,  celebrating a "+" sign on a pregnancy test,  going into labor, making their last mortgage payment.   Not fair, thinks I, who's already seen most those milestones, but still remembers them with fondness and longing.

Somewhere near us, someone is laughing at funny email,  smiling at the re-connection of an old friend on facebook.  

Somewhere near us, something bad is happening to a really good person, and something good is happening to a not so good person.   So not fair.

And all of this mixed-up jumbled-up world of fair and unfair; a world that makes perfect sense one moment and then absolutely no sense at the very next is just a part of this crazy thing we call a life.

May we remember to be thankful when something wonderful and incredible happens to us, and humble when something devastating happens - mostly, may we remember that this life of ours really isn't fair.   And especially,  may we be among the fortunate to get a taste of each dish - the bitter and the sweet.

Wednesday, February 02, 2011


If I could be a Superhero, I'd have a big tie-dyed cape, full of swirls of color and pattern - and I'd wear it over a bright pink leotard (hey, its a fantasy, I can imagine for a moment that a bright pink leotard on this body wouldn't send everyone screaming from the room, lol)  - and my superhero power would be the ability to scream "FREEZE" at the top of my lungs, and make it so.  Imagine being able to freeze moments of your life.

Because, when I think about my life, I picture a giant puzzle of those frozen moments, all parts and pieces of what make me, me. If someone were to ask me what my favorite trait about myself is, it would be just that - that I am consciously aware of "freeze" moments, while they are happening, and that makes my life feel joyful and content.  

Right now, at this moment, I am living a freeze moment.   Its snowing outside. A lot.  I'm not a big lover of snow, I don't like to be cold, I hate driving in it, and save for a very few select moments of thinking its beautiful, I tend to shuttle in and out the door, avoiding it at every chance I get.

But, I'm home from work, my kids are home on a snow day - and this feels good and perfect and right.  Dakotah is just waking up, all that hair piled on top of her head, wearing a too-big t-shirt inside out, still sleepy eyed, and mellow.   

What a time in her life for her right now. Starting her last semester of high school, busy on student council; planning next week's school bake sale to benefit abused and neglected children, working on the Valentine's Day dance at school. 

And yesterday, ordering her Prom dress - "the" dress that she has oogled over for nearly six months now.  Its ordered for sure for sure, there are no take backs, no chance it will not be in.  She is happy and excited we ordered it from NH - glad that no one in her school will have one like it.  Its the dress she's talked about for 4 years - knowing she would know it when she found it - and she did.

She also got accepted to a university yesterday in a BA Honours History program.   It's not her #1 choice of schools, but a very close second, and a relief to hear from one school as she waits the others out.  Just six months ago, I was terrified of her going off to university in the fall - she was so not ready to take on the world.

But six months have made a world of difference, and the tide has changed a bit in our house.   I can feel the shift of little girl to young woman, and although I wish I had my freezing superpowers many times over the years of her being that little girl, I am incredibly proud and happy for the young woman who has emerged as well.

She is a bit eccentric, just like I was at her age; and it will serve her well as she ventures out into the world.  She will question things, and analyze them.  She will see beauty in the world, and injustice as well.  She will laugh and cry and fall in love and have her heartbroken.   

And, hopefully, if she has listened to me just a little bit, she will know those moments are all puzzle pieces of her life - all necessary to put the whole picture together.   I've told her over and over again to capture the joy of life, to try and realize those moments that she wants to freeze as they happen, and to hold on to them for dear life when she is wishing a different moment will pass very quickly by.

Paige is sitting near me on the floor, her beloved catalogs, magazines, and books surrounding her; stopping every once in a while to say my name, or show me something in her book. 

Paige's life has the beauty of simplicity that most of us are not blessed to capture.  She is a 'live for the moment' girl, and has no worries of what tomorrow will bring.  That is an incredible gift if we only allow ourselves to see it.   When she is sad, she is sad, and when it is over, it is over. When she laughs, she laughs with her whole heart and soul, and has not a care in the world who is watching.

She has that innocence of trust with me that grew away way too fast with Dakotah.  She still believes me to be her superhero mom - who shows up with a few m&m's in a bowl, or some yummy smelling hand lotion, or a bathing suit with a promise of a dip in the pool in the summer;  a mom who can love up a babydoll faster than you can say abracadabra. 

It's these moments - just like this - hanging out in our p.j.'s, with the snow coming down so hard we can't see across the street, with nothing on our to-do list today but making a big pot of homemade soup, painting our fingernails, taking out the crayons, and maybe if my big little girl doesn't protest too much, having a picnic lunch on the living room floor - these moments that I wish my Superhero powers really worked.