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?

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...

"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.

FREEZE!

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.

FREEZE

For My T21 Sisters

Yesterday, a mom in our T21 group lost her precious daughter.  Renee was 10 years old, and had Down syndrome and Cystic Fibrosis.  She was a beautiful little girl, and all of us in our "sisterhood" are reeling from the news - saddened in a deep, soulful way, and wishing we could somehow pray it, or hug it, or wish it away.  Why must it be real?

Some of us have commented today on this community of ours - how we are so ingrained in one another by the simple addition of an extra chromosome into one of our children.   How we have extracted so much joy from one another, so much knowledge, so much love.   Yet, we have also handled more than our share of saddnesses, as we have had to say good-bye to many that we loved so dearly.  There have been too many good-byes, and sadly, there will be more.

Just yesterday, I was commenting on another friend's blog about that fear of death, especially in our children with special needs.   I live every day with that fear in the back of my head.   As I said to her, I think it comes from our realization that there truly are no guarantees in this world.  

We have learned that lesson for real, not in the abstract.   We know that statistics, like 1 in 800 babies are born with Down syndrome really doesn't mean all that much until you are that one.  That the termination rate of 7 or 8 per every 10 diagnosed prenatally is just a number, until your heart aches for the real knowledge of what has been lost. 

We are told that when we become mothers, we learn to wear our hearts outside of our bodies.  And all of us would agree that is true.  I could never have even begun to comprehend how deeply I could love, how deeply I could be in love, until Dakotah arrived.  And it is a sustainable love - 17 years later, and I'm missing her terribly today, as she has been off at Leadership Camp for two days.

Two days.   And I can't wait to get her in the house, to find out about every detail of the last two days.  Of course, an hour in to the discussion, I'll forget how quiet it was while she was gone, but I will be happy just the same that she is here.

I feel the same ache of missing Paige when we are apart.  Every day, I am happy and excited to see when her bus arrives.  I can't wait to talk to her, and just be near her.

And perhaps its because Dakotah has begun to spread her arms widely and is ready to fly away a bit that I don't feel quite the same frailty with her as I do with Paige.  Paige needs me for nearly every aspect of her life, and most likely, it will always be that way.   I will be happy and honoured to feel needed by her until my days have come to an end.

Perhaps its because we are aware that there is a very real campaign for eliminating children with T21. Perhaps its because we are aware that sometimes our little ones are born with very real health problems; health problems that make things like developmental delays seem like a walk in the sun.  Perhaps its because so many of us have held vigil for one another's children, as we've prayed, and hoped, and celebrated, and cried.

And, perhaps its because each of us have been thrust, either softly, lovingly, or cruelly and forcefully into a world we knew nothing about.  Each of us carries in our souls that story - that story of when we first found out that T21 would play a significant role in our lives.   Some of us knew prenatally, some of us knew only at birth. Some of us received the news in sweet, wonderful ways, and some of us, not so much.

Regardless, we all carry that "freeze frame" moment.  That exact moment when we realized our lives had changed significantly, drastically, forever.  That moment swept us off our feet, and hit us with the realization that a single moment, a blink of an eye, a nanosecond on a clock, can make our hearts stop beating for a second, can make the whole room feel like one single speck of light.

Since that moment, we have been engrained into one another's hearts, knowing that that single moment empowered us, made us stronger, made us laugh longer and cry harder.   That moment, someone turned the light switch on, and our souls opened a bit wider - just wider enough to fit an extra chromosome into. 

We live with great joy, great celebration, great pride in our children.   We spend most of our days in awe of our luck - the luck of having these amazing people in our lives.

And, we live with a tiny little spot in the back of our minds that won't quite let us forget that real life is just that - fleeting, dashing, flitting about in front of us,  begging us to hold on while we can, because we never quite know when it will change again, in just that blink.

For my T21 friends, and sisters,  who are all wishing we could erase that cyberspace between us right now; who have laughed and cried and celebrated with me, I want you to know you are all very real. 

~~~~~~~~~~~~~~~~~~~~~~~~~~
"What is REAL?" asked the Rabbit one day, when they were lying side by side near the nursery fender, before Nana came to tidy the room. "Does it mean having things that buzz inside you and a stick-out handle?"


"Real isn't how you are made," said the Skin Horse. "It's a thing that happens to you. When a child loves you for a long, long time, not just to play with, but REALLY loves you, then you become Real."

"Does it hurt?" asked the Rabbit.

"Sometimes," said the Skin Horse, for he was always truthful. "When you are Real you don't mind being hurt."

"Does it happen all at once, like being wound up," he asked, "or bit by bit?"

"It doesn't happen all at once," said the Skin Horse. "You become. It takes a long time. That's why it doesn't happen often to people who break easily, or have sharp edges, or who have to be carefully kept. Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in the joints and very shabby. But these things don't matter at all, because once you are Real you can't be ugly, except to people who don't understand."

My Poor Blog

My poor blog has fallen victim to evil Facebook! I so often feel like I have a post to make, and then get distracted, and don't make it. Its as if I'm overwhelmed by all the different things I want to post that I end up posting nothing!

At any rate, Fall is arriving here at our house, the mornings are cool and everyone has their official back-to-school cough and cold. Dakotah has entered her Senior year at high school, and has hit the ground running. She is heading off to Leadership Camp in a few weeks, and is busy helping organize that. She is on student council, and student council is very active in her school. This morning, she left the house with lots of "spirit" clothes for spirit day, and is part of her school's improv group that is meeting at *yikes* 7 a.m. some mornings. That means her leaving the house at 6:15, and getting up at 5:30. What a big change from her lazy days of summer where I would finally get exasperated at her at 2 p.m. and tell her "enough already!" - get out of bed!!!

Paige is in Grade 7 this year, and has switched schools, as well as school boards. This means a whole lot of new people to meet, a whole new building, new routines, and lots of new things to get used to, for both of us. So far, it has been an incredibly good choice. The school has been so very welcoming to her, geniunely wanting to learn about her, and to meet her needs. Her classroom teacher seems amazing so far, and is so good at inclusion for her. He has a son with autism, who is quite a bit younger than Paige, so perhaps he is seeing his future in her eyes in a way, and wanting to make her classroom experience positive.

It seems everywhere we go, we are always meeting new people who's lives have somehow been touched in a positive way by someone with developmental delays, or physical disabilities. What a blessing this journey has continued to be for our family.

I took the summer off from my job, to spend with my kids. It was glorious, and in the fashion of Seinfeld's "Summer of George", I lavished in it. It was so nice to be near them every day, literally spending every moment of the summer with Paige, and as many as Dakotah's busy social schedule would allow. We swam and soaked in the sun, and cooked on the barbeque, and went on little road trips, and did all of those things that we wouldn't have been able to do if I had worked. We even watched Big Brother, lol.

So. now I am job hunting, and sort of excited to see what the next adventure in life will bring to me. Always the optimist, I continue to feel as if I have a real purpose here on this great big planet, and know that the opportunity to explore that still lays before me in some form.

I guess that is really the essence of life - to look forward to what is to come, happy to know it will be as awesome as we allow it to be, and sure that we can handle to stumble stones along the way.

Happy New Year!

Wow - 2010 is here! And so....here we come 2010!

Its a quiet day in my house, the snow is falling steady and lightly outside, Dakotah is still sleeping, Paige is watching her Sesame Street New Year video for the 200th time, and I'm trying to be all reflective and contemplative.

I'm contemplating resolutions, and wondering which ones I should make, which ones I should ignore, and which ones I might actually keep! I'm not feeling ready to gear up for a brand new year just yet, so I think I'm going to wallow in this semi-holiday weekend, and commit only on Monday.

One thing I have thought a lot about for the new year is where my blog is going. Since joining facebook, I have sorely neglected blogging. I have always maintained that I wanted my blog to be a sort of gift to my children - a chronicle of their daily lives, my thoughts as a Mom as I raised them, and a place where they would know the real me - free of the everyday stuff like laundry that never ends, lol.

As Dakotah gets older, I'm more cautious about what I post about her, as she has the right to pick and choose what stories I share, no matter how cute or funny I think they are. :) She is so quickly becoming a young woman, and not only my oldest daughter, but a wonderful friend as well.

I think, especially as Moms, we hold so much history for our children - stories that are never remembered or repeated except by us. Family histories, and just funny moments we hold on to of our kids that only we share.

Its something I've always thought about - how so much of that goes with us, and unless we get it down, it gets forgotten.

A couple of months ago, I stumbled about a great idea, called "Journal In A Jar" which is basically a series of questions that are posed to help you get started on writing down the important stuff. I think this would be such a wonderful gift to give to someone - and then, in return, a wonderful gift to receive when it was all done - the chronicles of someone's life.

So, because my blog means so much to me, and because I've slacked off on the every day musings of our life, I will be relying on some of these questions to keep my posts going. Randomly, I'll post a question and then journal about it, in no particular order other than what catches my eye on that day.

I hope some of my friends and readers will find some inspiration and lead me to their blogs where they answer some of these same questions. And who knows, some of you may find yourselves the subject of my day's post! :)