Bits of Betsy

Today is World Down Syndrome Day!

2011-03-21T15:53:00.000-04:00

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

2011-02-25T16:00:00.000-05:00

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!"

2011-02-03T19:13:00.000-05:00

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!

2011-02-02T12:51:00.000-05:00

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

2010-10-08T16:36:00.001-04:00

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

2010-09-16T10:28:00.003-04:00

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!

2010-01-01T11:24:00.002-05:00

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! :)

Merry Christmas!

2009-12-27T13:39:00.002-05:00

It seems impossible that Christmas has come and gone already. It was just yesterday that all the commotion in our house was celebrating Dakotah's 16th birthday.

This year we were especially thankful for the health of our family. This was the first Christmas in three years that Paige has not been in a full body cast, laid out on the floor on her back to open presents. She is so close to walking again - but progress is slow, and she is unsure of herself, still afraid to take those first adventerous steps.

She is such a good kid - so good natured and easy going. So many routines have been tipped upsidedown over the last few weeks, and she thrives on routine. Still, she has handled it all like she always does - taking like as it comes, and smiling all the way.

Dakotah has enjoyed her holiday off - she is the typical teenager - crawling out of bed very late in the morning or even early afternoon. Its always in the back of my head that there are just a couple of years left for her to be in our little nest, for our Christmas to be like it is, and not just her coming home from school, etc.

She is gearing up to exams and big semester projects due in the next couple of weeks. She is enjoying that newly acquired driving licence - and wanting to drive everywhere, all the time. With all the freezing rain we have had over the past few days, she is quite bummed when we tell her no!

I hope all of my friends and family had wonderful holidays and created memories that will last a lifetime!

Another party picture!

2009-10-21T03:19:00.002-04:00

Dakotah even had tie dye jello shooters (non-alcoholic) at her party. How fun are these?!

You're 16 - You're Beautiful - And You're Mine!

2009-10-19T19:25:00.009-04:00

Well, mine for a little while longer at least.

Dakotah turned 16 on Saturday. We ushered the night in 60's style, with retro clothes, lots of Beatles music, tie dye stuff, and peace signs, baby. Add in a dinner and dance, and a fun bartender for mocktails, and the night was fantastic.

I hope Dakotah remembers the night for years to come. She wrote on her facebook page that night:

“Life gives us brief moments with another...but sometimes in those brief moments we get memories that last a life time...”

So true...

Here are some pictures of her magical night.

Getting ready for the night with her friends Alex and Jess:

Here's to you!

Her friend, Nick, showing her the picture he took of the "Imagine" memorial in NYC at Strawberry Fields. Telling her the story of the guy who decorates there every day.

My hippie girl and her buddy "EZ"

Opening the frame that has tickets to "Never Shout Never" in it:

Realizing she is going to a Never Shout Never Concert, and in her own words, "meeting my future husband, Christofer Drew"

I love you, my sweet girl....

Upside down and 'round and 'round

2009-09-09T23:10:00.001-04:00

What a crazy mixed up week it has been. My entire neck, back, and spine feel like someone is shooting poison stress arrows at me on a minute-by-minute basis. I'm surely getting old, which I guess isn't that bad of a thing to be doing.

The girls started school on Tuesday. Dakotah has a pretty full course load, but she seemed ready to return and dig into the routine. She has just two years left of high school, and even she seems a bit shocked by that - its going by as fast for her as it seems to be for me.

Paige was more than thrilled to start back at school too - she loves it, loves being there, loves being with her friends, loves the routine. Unfortunately, there have been some bumps for her start this year - we haven't figured out busing just yet, and I was more than shocked to arrive Tuesday after school to pick her up to discover that her aide had been cut to just a half day.

I was most upset because it was done without speaking to me, or even informing me, and even her teacher and the aide herself were surprised with the news on the very first day of school.

She has an IEP in place, and I'm confident that it will be ironed out, as it seems to be mostly a scheduling blip made during the summer by the former principal, but it isn't solved yet, and I've got my hackles up about it - ready to make some noise if it doesn't change by week's end.

Right now, she is physically dependent for help with basic needs like walking and toileting, and its not even comprehensible that anyone would think she could go a half day every day without assistance in those areas. Couple that with the fact that she is non-verbal, and needs someone to work with her academically during the day, and well, it is not only unacceptable that they do not carry out the IEP as outlined, it is illegal.

I'm trying to be calm and nice about it, but I'm also determined and quite ready to be assertive in any way that will bring the quickest result. The nice way would be to schedule meetings and bring representatives in, etc, but the fast way is probably to make some noise publicly - the whole squeaky wheel theory, you know.

So, we'll see how that goes.

My job has been really stressful lately too - my boss isn't sure of the direction of his company, and every day seems to bring a different "game plan" to the table. Its difficult trying to follow rules and procedures when they change on a daily basis. So, I don't know where that is going either.

And of course, regular "life" stuff happens - the engine on my van went; it was a $2,000 repair. Next week, we are putting in a new oil furnace at a cost of $1,500. Back to school uniforms and expenses have crept up on me - its always something :)

Last Friday night, Dakotah was at a friend's house for an end of summer party, with about 20 or 30 of her friends from high school when one of the boys was called away suddenly. They found out later that his dad had died very suddenly of a heart attack at the age of 52.

All of Dakotah's friends went to the wake tonight - the first one Dakotah has ever been to. It was emotional for them all, and powerful to know that they were all supporting one another and leaning on each other to be there for their friend Cody.

I was proud of her for going, and would have liked to be there when she did, but it was sort of a rite of passage for the kids as they all went in to express their sympathy together.

As I was driving to school to pick Paige up today, I was thinking there isn't a single spot in my life that doesn't feel stressful. Of course, that isn't completely true - everyone is healthy, well-fed, has a nice warm bed to sleep in, etc.

But, I was feeling a little whiney, to say the least.

Then, I arrived at school, went into Paige's classroom, where I was met with the most beautiful little girl-our friend Emma - who ran to me, jumped in my arms, hugged me tight, and said my name over and over again, and then jumped up and down with excitement.

With a greeting like that, who wouldn't leave with a smile on her face, no matter how goofy the world is acting right now?

A Paige funny!

2009-08-19T10:41:00.002-04:00

Paige has been able to run the dvd player from a very young age. She has favorite movies, and even before she recognized letters and words, she could tell just by looking at them which ones were her favorite.

She can fast forward or rewind the dvd with exact precision to the spot she wants to watch, and she has spots on her favorite movies that she likes to watch over and over again. Anyone who visits our house leaves us humming a tune or singing a song that they can't get out of their head for probably hours after, lol.

So, the other day, she couldn't find the movie she wanted. She had the case, but no movie. So, she picks up the case, looks for a dvd in the group that has no writing on it. She then took the blank dvd and the case of the movie she wanted to the computer, handed it to Wayne who was sitting there, then opened the door to the dvd writer on the computer, put the dvd in, and waited, hoping that Wayne would find a copy of it and burn it for her.

She is so smart that girl of mine!!!

Happy Dance!!

2009-08-08T22:22:00.003-04:00

*drum roll*

Tonight, coming back from the bathroom, Wayne let go of Paige's hand for a few seconds, and she STOOD ALL BY HERSELF in the middle of the living room. No other support, no walker, no wheelchair, no wall to hold on to, nothing but air, baby!!!

She was scared to death, and wasn't too happy until we started screaming and celebrating, and then she realized it was something to be proud of.

She couldn't figure out how to sit down without help, and didn't lift her foot to take a step, but she stood and it was glorious!!

How lucky I will be to witness first steps again!! Yahoo!!!

OW!

2009-08-08T22:07:00.003-04:00

I think I broke my toe. I was going up the stairs in the dark two nights ago and of course, the stuff I left on the stairs to be taken up by Wayne or Dakotah had simply been stepped over on their way to bed.

So, as I realized it was still there, I reached to pick it up, and as I did, my foot collided with the big column base at the foot of our stair railing. It hurt like a beeotch but I shook it off - until I laid down in bed, and touching my toe to the sheet sent throbbing, pulsating pain into my foot. Every time I moved, it woke me up.

Geez. Now its all bruised and swollen looking and pushing its two brother toes off to the side.

You don't realize how much you use a tiny little toe, especially one that's not even on the side of your foot. It stretches with every step. Every time someone comes within 10 feet of me, I scream, "watch my toe!!!"

Kirby is like a magnet to it - he's stepped on it about 20 times already.

I'm pretty sure I'll recover from this tragedy, lol, as I did the same thing about 15 years ago when I tripped on Wayne's golf bag. Its already feeling a bit better, but it would be nice if I could suck some sympathy out of it for a while. :)

Good thing I don't have big feet - I can't even keep these small ones out of the way of anything.

I think I need to invent a toe sling.

Or maybe a toe cast.

And then you could all sign it in teeny tiny letters.

Happy Birthday to my dad

2009-07-27T01:38:00.005-04:00

Today would have been my dad's 77th birthday. He died nearly 12 years ago, before he even had a chance to grow old. I think of him often, and miss him dearly. Most milestones - his birthday, holidays, the date of his death - pass by with a peaceful calm feeling, knowing he is still here with me, and that one day I shall meet him again.

I'm not sure why, but today its hard - really hard - to miss him. Its nearly 2 a.m. and I'm sitting quietly in the dark, thinking of him, and praying for the strength to get through the day without the deep, engulfing sobs that I feel wrapping their hands around my throat.

I'm lonely for him. He was such a good father.

~~~~~~~~~~~~~~~~~

In The Light

A shadow of joy flickers; it is me.
I told you I wouldn't leave.
My spirit is with you.
My memories, my thoughts
are embedded deep in your heart.
I still love you.
Do not for one moment think
that you have been abandoned.
I am in the Light.

In the corner, in the hall,
the car, the yard
These are the places
I stay with you.

My spirit rises every
time you pray for me,
but my energy comes closer to you.
Love does not diminish,
it grows stronger.

I am the feather
that finds you in the yard,
The dimmed light
that grows brighter in your mind,
I place our memories for you to see.
We lived in our special way,
a way that now has its focus changed.

I still miss you
and long for the
many words of prayer
and good fortune for my soul.
I am in the Light.

As you struggle to adjust without me,
I watch silently.
Sometimes I summon up
all the strength of my new world
to make you notice me.
I show you that I am here, and you feel me.
Called to you by your grief,
I try to impress my love deeper
into your consciousness.

As you should, I call out
to the Heavens for help.
You should know that
My soul is now healthy.
Your love sends me new found energy.
I am adjusting to this new world.
I am with you and I am in the Light.

Please don't feel bad
that you can't see me.
I am with you wherever you go.
I protect you,
just as you protected me
so many times.
Talk to me and somehow
I will find a way to answer you.

Whatever your question,
whatever your fear,
I will hear you
I will see you with my new eyes.
I am learning to help wherever you are,
wherever I am needed.
This can be done
because I am in the Light.

When you feel despair,
reach out to me.
I will come.
My love for you truly does
transcend from Heaven to Earth.

Finish your life with the enthusiasm
and zest that you had when we were
together in the physical sense.
You owe this to me, but more importantly,
you owe it to yourself.

Live life for both of us.

I am with you because I love you
and I am in the Light.

---Author Unknown---

Dream a little dream of me...

2009-07-26T19:02:00.002-04:00

I have about 7 or 8 dreams that I have had for close to 20 years. These dreams are always the same, all the same details, people involved, etc. They come without rhyme or reason, and are so familiar to me that I am almost in an awake state when I am dreaming them.

Its funny, but I almost forget the dreams until I have them again, and then I wake up thinking, "there is that darn dream again." Last night's dream was the one about my sister finding out she is pregnant. In the dream, I see her go through all the stages of pregnancy, with her giving birth to a little boy. Then the dream fast forwards, and I see the little boy about two years old.

In the dream, I am near the boy, but I can't touch him. And I never learn his name. That bothers me, both in the dream, and when I wake up. And I ache for this little boy, totally jealous of her getting pregnant by "accident."

There is so much strange in this dream - first, Kathy's boys are 27 and 31, and she is, well, past child-bearing age, lol. I'm very close to her and her boys, and don't understand why I dream that I can't get near this child.

And, in my waking hours, I am not, not, NOT desiring to be pregnant, lol.

This dream, and the few others that I keep having bother me for days after I have them...I feel vulnerable, haunted by them.

Does anyone else remember their dreams so vividly?

Before the pool was even full...

2009-06-28T15:26:00.005-04:00

Someone had to stand in the way of the water. It should be fun keeping this guy out of the pool all summer long! Paige has been in three times, and is having a blast - she is getting so much great exercise for her legs!

Advice to myself...

2009-06-10T15:42:00.003-04:00

I stole this idea from Dave. He read an article in a magazine where celebrities wrote a letter from their "adult me" to their "teenage me."

I thought this was a great idea - I'm always writing letters to my children, and just the other day, Dakotah and I were discussing this...how sometimes I write her a letter and give it to her, and sometimes I just tuck it away. I told her it made me feel good to know that when I am dead and gone, and she is going through all of my "stuff" that she will find pieces of her life and words of wisdom from her Mom in places she least expected it. In fact, I would like to add the words, "whisper words of wisdom" to the edge of my tattoo - because I think that's one of my most important jobs as a Mom.

So, here is my letter to 15-year old me, on my birthday!

Dear Betsy,

Today, you are 15. Later tonight, your friends will throw you a surprise birthday party in Kathy's basement. It will be one of the first sort of girl-boy parties you have, and you will remember this party for years to come.

You're just beginning to grow up, and although it may seem slow to come to you now, adulthood is just around the corner. I wish I could offer you the wisdom of the years in the way that a 15-year-old could understand. Enjoy your high school years with vigor - laugh often, study hard, and avoid high school drama.

In a couple of years, you will be voted most likely to succeed in your graduating class, along with most sensitive and, ironically, best couple. Just to let you know, that best couple thing isn't really going to work out, as your long time high school boyfriend is actually gay. He's gonna figure that one out in a few years, and you are going to have to take the ribbing of people who tell you that you 'scared him gay.' But, not to worry, there will be a few other suitors along the path over the next few years.

You should really listen to the advice of some of your teachers, especially your English teacher, Mr. Gigi, who tells you over and over again that you are a writer - that its natural and easy and fluid in you. Don't be so worried that its not a real job - give it your all, and maybe it will be. Believe him when he tells you words are powerful, and that you have the power...

Oh, and take advice from your business teacher too - even though you are learning to type on a manual typewriter, and can fling that carriage halfway across the room faster than most, this talent will soon be obsolete. You won't even believe what its eventually replaced with. Still, she has some good advice - sit up straight, put your feet flat on the floor, no chewing gum and DON'T LOOK AT THE KEYS.

And as long as we're listening to advice from teachers, keeping one body space between you and the next person is always a good idea too. ;)

That permed hair of yours - you're going to wonder what the hell you were thinking someday. Same goes for that blue eyeshadow, the turned up collar on your shirt, and the three piercings in each ear. You're probably still going to love the smell of Love's Baby Soft and Jovan Musk though.

And I'm pretty sure that you'll re-discover clogs in the form of Birkinstocks at some point in your life.

Don't believe it when people tell you that you can't change the world. Its nonsense, and uttered only by people who don't realize the power of one person, of paying it forward, and of remembering to be grateful.

Some things you might consider NOT doing in the next few years - getting into bars underage on the arm of your brother-in-law, mooning a policeman at a town hall dance, showing up at a Halloween party dressed as Woodstock from Peanuts, only to realize its more of a drag queen kind of party, popping out of a birthday cake, winning a "party naked" t-shirt, harrassing the Chuck E Cheese mouse...

And if you decide not to take my advice and still do those things, be glad that this thing called "Facebook" has not yet been invented.

Be prepared for lots of surprises in your life. At 15, you cannot even imagine what the next 30 years will bring you - the friends you will make, the friends you will lose, the jobs you will have, the journeys you will take. Relish them all, and realize they are all forming a part of who you are and who you become. Shake off the bad stuff, and fall to your knees and thank God for the good stuff.

I know you love school - spend your life being a student. Absorb the world like a sponge, learning life's lessons in places that you least expect to find them. Remember, everyone has a story, and those stories are what make us human. Share yours and take great interest in others.

When you are voted Most Sensitive, it will be because you are an emotional person...something you will debate over and over again whether that is a good thing or not. Don't mistake being sensitive for not being strong. You are going to surprise yourself and everyone who knows you with your strength in the years to come. You are going to learn to appreciate that you love deeply, cry often, and laugh even more. You will understand and be grateful and you will not want to change that.

You will be blessed. Many, many times over. You will look back on your life often and be so surprised at the journey. But, you will not wish it away; you will celebrate it.

Its gonna be a great life - see ya in 30 years.

Betsy

I'm Still Alive!

2009-06-04T15:32:00.003-04:00

Wow, I just realized its been nearly a month since my last blog post. I'm pretty low on the hierarchy scale for the computer lately, as Dakotah works to finish up her year end projects for school, and Wayne is busy scheduling for Little League Baseball for the summer.

Its that crazy, fun time of the year where its busy and fun, but almost too busy to be any fun, lol.

The girls have just a few weeks of school left. Dakotah will be halfway through high school in just three weeks. She has had a few meetings at school to try and pick her courses for the next two years, with the "what do you want to be when you grow up" thought behind it.

She really isn't sure, and is really a bit stressed about it, so afraid she will make a wrong choice, or that life will somehow throw her a curve ball that she can't anticipate, and that she will wish she had taken another path.

Of course, life is a journey, not just a path, and no matter what she decides now, she will encounter lots of surprises in the years that follow. Heck, I'm 45 and still probably cannot answer that "what do you want to be when you grow up" question.

Maybe, I'm just not sure I'm all that grown up yet. :)

I want to give her great wings to fly, and want her to know that the world is hers for the grabbing, but I do it all with a big lump in my throat, knowing how fast she has grown up before my very eyes.

We look forward to new phases in her life with great anticipation, and a tiny bit of bittersweet "seize the moment" flavour.

She is such a great kid, and so far, fingers crossed, these teen years have been no more trying than a constant quest to keep her room clean...a quest I simply cannot seem to succeed at, no matter how much I nag at her to do it.

Paige is doing wonderfully - she is not walking on her own yet, but she loves being outside, and begs to go for a walk at least 10 times a day. She loves being outside, even if it means in a stroller for right now.

We are installing a pool for the summer, and I'm so happy for that - both girls love the water, and it will be so good for Paige's physical strength. I'm going to want to sneak way from work many afternoons, I'm sure!

Life is strolling along at a very normal pace for all of us now, and I'm not going to complain about that at all!

What a lovely night

2009-05-06T19:14:00.004-04:00

My friend, Camille's, daughter had her Confirmation on Monday night. I don't know if you can tell, but if you look closely at her left hand, she has her fingers crossed - she is either making a wish, or telling a lie, rofl.

I was so honoured and happy to be her sponsor. It was such a magical night - Emma was so sweet, and so adorable, and so affectionate all night long. Every time she looked at me, my heart melted.

As I said to Camille, it was as if the Bishop were tying our heart strings together as he Confirmed her. I felt so bonded to her, and tied to her soul in an incredible way. Every few minutes, she would just gently pat my hand, or kiss me so softly. We were both just adoring one another.

I know we all go through times early on when we feel like everyone is looking at our children because they have Down syndrome. We worry that people are staring at us or making judgments about us.

That feeling eventually goes away, and I can't even remember the last time I worried, or even thought about anyone noticing Paige had T21.

But Monday night, well....I really felt like all eyes were on us. There were probably 50 children with parents and sponsors at the Cathedral, and I felt like every single parent and sponsor was looking at Emma and me - with envy and jealousy that *I* got the privilege of standing beside her, putting my hand on her shoulder, and praying for her. I felt like every set of eyes in the room was looking at us, wishing they could be us, as we snuggled and hugged through the service.

My heart nearly burst when Emma was standing on the kneeler in front of me, and reached around and took my hand to put it on the pew in front of her, so I was protecting her on both sides, and then, as if it weren't just right, she took both my hands and wrapped them around her waist. I could have fainted from pure joy at that moment.

As I whispered to her over and over again at the end of the ceremony "Thank God for you, Em, thank God for you."

Baby Michael

2009-04-23T00:10:00.003-04:00

Today, Paige had a dentist appointment at CHEO. The clinics at CHEO are lined up and down a long corridor on one wing of the hospital. There aren't too many of those clinics that we haven't visited at one time or another - audiology, neurology, opthamology, general surgery, etc.

The dentist's office shares the same waiting room as the neurology department. While we were waiting for Paige to go in and have her teeth cleaned, we were people watching as we often do. Paige love, love, loves to people watch, and is content to sit and do it for a very long time. She loves being in a mall where she can see many people come and go.

For me, I am a dreamer, I guess, and I believe that everyone has a story to tell. When I people watch with Paige, I try to imagine the story that I would be told if I were brave enough to ask - imagine the beautiful, maybe heart-wrenching stories I could learn from an old lady out buying lottery tickets, or a little girl happily buying her first pair of school shoes.

So, it was with this kind of absent minded dreaminess that Paige and I saw baby Michael. Now, I have no idea if that was his name, but I think he kind of looked like a Michael. He was about 3 or 4 months old, dressed in a navy blue and tan plaid shirt with little khaki pants on and a sprig of white blonde hair on the top of his head.

Baby Michael and his parents were coming out of the neurology department, and both mom and dad were visibly upset. Dad was nearly gasping for air, as tears streamed down his face, and he struggled to hold it together. He was clinging to his son for dear life. Mom was red-faced, and tear stained, with that deer-in-the-headlights look that is never good.

They were escorted across the hall, to the surgery clinic. Once they were left alone for a minute, Mom folded into Dad's arms and they rocked back and forth and just hung on to one another, rubbing baby Michael's back as they did.

Within a minute, they were again whisked away into an office.

I so wanted to shoot them magic words bubbles - and I'm not even sure what those words would be. All in a moment's time, I wanted to tell them that it was o.k., that they were in good hands, that they were strong, that the love they had for their baby would make them nearly limitless in what they could endure for him. Maybe I wanted to say, "I know, I know" or "I understand."

But, of course, I don't know much of anything, other than they had just received devastating news of some sort.

I pray that the desperation that I witnessed was fear - fear before acceptance of something that could perhaps be fixed, something that would allow them to love and cherish their dear boy for years and years to come.

I pray that the days ahead for them are good ones, that the life lessons that are about to be thrust upon whether they asked for them or not, are good ones.

Most of all, we prayed for baby Michael tonight...a sweet little boy who's story or name we will never really know.

But, I'm sure when Paige and I said our prayers, Our Good Lord knew exactly who we meant.

Why do I do the things I do?

2009-04-19T17:25:00.003-04:00

After bragging last week that I haven't had a cold in five years - what happens?? Yep - I get a cold - a bad one - one worthy of an every five years experience. *cough, cough, sniff* (oh, don't forget *cough, cough, cough, cough, leak pee*)

More Easter fun...

2009-04-15T15:49:00.005-04:00

Here is my latest attempt at home-made Easter eggs - truffle-like and filled with chocolate, vanilla, nuts or coconut inspired by Bakerella - yummy, but a little goes a long way - we still have too many left!

These are still in the rough stages, still drying, so there's lots of drippy's on the edges.

Thanks to Dakotah and my friend Julie for their groovy decorating skills!

Easter Evening

2009-04-14T20:08:00.003-04:00

Dakotah's favorite thing to do...take pictures! Notice the little line of chocolate on Paige's bottom lip. It was Dakotah's way of convincing her to "model" for her. By the grin on Paige's face, it looks like she thought she was the one doing all the convincing!

Be Inspired, Be Humbled...

2009-04-14T11:42:00.003-04:00

If your face needs to smile so wide it makes your cheeks hurt,
If your heart needs to swell so much it feels like it will burst,
If your soul needs a hug so warm and tight you never want to let go,
If you want a feel good moment that will carry you through the day,

Then take just seven minutes to watch this video - you'll be so glad you did!

Susan Boyle

What beauty we might miss...

Indeed!!!

2009-04-12T14:20:00.003-04:00

Today's The Day

2009-03-31T16:19:00.003-04:00

Make it YOUR day to drop this word from your vocabulary.

A Few Pictures From Paige's Birthday

2009-03-29T19:01:00.007-04:00

Paige turned 12 last Monday! We made the mistake of opening gifts first and then going to the cake - Paige isn't much of a cake eater and was rather unimpressed with my decorating skills, lol.

A great new blog!

2009-03-29T10:34:00.004-04:00

My friend Julie, just started a fantastic new blog called Recipe Adjustment.

If you like to cook, like to eat, like to read about cooking or eating, need a recommendation on a product or an ingredient, then you MUST bookmark this blog and visit frequently.

Julie is the consummate cook - she spends hours devouring recipe books, and then tweaking the things she reads into delicious one of a kind food. She is also a great researcher, so if you are trying to decide which mixer is the right one for you, she's the girl to go to. She can find you the best, at the cheapest cost!

I can't wait to see where Julie takes her blog - I'm excited to see decadent recipes, and consumer information about food warnings, specialty recipes like low sodium meals, or how to prepare a whole week's worth of meals on a shoestring budget in just one afternoon.

Make this blog one of your dailies - you won't be sorry!

Dear Dad,

2009-03-23T22:52:00.002-04:00

March 22nd marked the 11th anniversary of your death. Its hard to believe that we said goodbye to you 11 years ago.

I miss you terribly, and long for the sound of your voice. I still have that same dream I've had since you died - the one where you are sitting in the corner chair of my dining room, while I am entertaining guests. Only I can see and hear you and you are telling funny stories and commenting about the people around the table and the things they are talking about, making me laugh right along with you.

Its a strange dream, and its funny that it keeps happening, almost identical every time I have it. I've begun to look forward to the dream, and am always happy when I wake up to remember it. I can see your crystal blue eyes so clearly in the dream, and can hear your voice as if you are sitting next to me.

Its a strange combination of emotions - this missing you so badly, literally aching for my dad to be alive again, and then feeling so happy and so blessed to have had such a great father who left us too young, but with amazing memories of an incredible man.

I imagine for anyone who truly loves their children, there is no greater honor than to die knowing your children adored you, to know you were a good parent, and that you made a huge difference in the lives of the people you created.

Please know that you excelled in all of these areas, Dad. I have adored you forever, and will continue to adore you forevermore. You guided me and shaped me into the person I am, and I am forever thankful to you for that.

As much as I miss you, it was your soul that made you an amazing father, not your physical body. And I feel just as close to your soul as I ever did. That makes the missing you part just a little bit easier.

I'm hoping you've saved a seat for me in Heaven, because the minute I get there, I'm going to be jumping from cloud to cloud, looking for the man with the gentle voice, the white hair, and the amazing eyes - and I'm going to sit right down beside him, and tell him that I love him.

And then, Dad, you are never going to leave my sight again.

Love you with all my heart,

Betsy

As the kids' today say, it was a par-tay

2009-03-23T22:19:00.002-04:00

Last week was March break for my kids. After much deliberations, and many negotiations, Dakotah finally talked me into allowing her to have a party at our house on Saturday night.

For any of you who haven't experienced 15 and 16 year olds yet, let me just tell you that the crazy 8-year-old parties you've witnessed are nothing. Those you can organize, and at least somewhat guide the children through the chaos. The cool things are balloons and treat bags and messy cake and ice cream.

When you're a teenager, the word party takes on a whole new element. Dakotah thought that perhaps 20-25 people would be the appropriate number of guests. I kindly suggested 8-10. We settled on 14. I might not have bargained quite enough on that one.

So, set up with a whole list of household chores to d0 (hey, I had to get some benefit from it!), Dakotah cleaned and organized, and did everything I asked of her last week. Which was actually pretty darn nice.

And when the honored guests began to arrive, I did what I promised - I slinked myself, my husband, and our youngest daughter up the stairs so that the guys and girls could do their thing.

I wish I had my computer upstairs at the time, because I had so many thoughts about this little get together...

Its strange being on the "grown up" side of things. Listening to the kids talk and laugh and just be goofy reminded me of my teen years, and they truly don't seem like as many years ago as they really are. It seems strange that I was the supervisor, the one "in charge" - when I so vividly remember being a kid just like them.

I have always believed that one of the keys to successful parenting is to know your children's friends. As much as a pain as it is to have kids hanging around your house all the time, I think it is well worth the investment in time (and groceries!) to have them be familiar with your home, and for you to be familiar with them.

I want to know what the kids Dakotah hangs out with are like, and I want them to know what to expect from me...where I am willing to compromise, and where I am absolutely not willing to compromise.

Dakotah did a really good job as hostess; she turned music and voices down when they got too loud, she stopped the sillies when kids were being crazy, and she checked in with me often. She even tolerated me coming and going every hour or so, just to kind of make my presence known.

I have to say, I think she really does have a pretty good group of kids she hangs out with. Even though the language sometimes left a bit to be desired when I wasn't downstairs, they were polite and respectful when I was. Some of the bits and pieces of conversation that drifted upstairs was a bit interesting at time, but nothing particularly shocking.

I was a bit surprised at the "couples" that seemed to be there - but these are kids in their mid-teens, and its a rite of passage to have a boyfriend or a girlfriend; its the time to begin to learn some of the intricacies of relationships, and to learn about who you really are. I felt kind of old and like my own mother when I wanted to sit between them on the couch. ;)

I haven't experienced the boyfriend thing with Dakotah quite yet, so getting a little taste of it was just another notch on the belt of this motherhood thing.

Right now, she is a social butterfly, who travels in a big pack of kids. Every weekend there is a party, or a movie night or something going on. I spend gads of time taxiing her here, there and everywhere. Most weekends, I don't see 5 minutes for myself, and there are times when I just want to scream "enough already."

I really do want her to love her high school years, to have fond memories of it, and to make good friends that she may carry with her for a long time. I want to have a good relationship with her, where she feels that she can talk to me about anything. I'm not seeking her friendship, but her trust in me as her mom, which sometimes takes on the role of disciplinarian and advisor, and yes, sometimes even dictator.

I don't know that I will agree to parties at our house too often - I was just too nervous, feeling a bit too out of control, and fretting a little more than I probably should have. It was just too many bodies to be responsible for.

But, we all lived through it, and everyone seemed to have a good time.

Every day these two girls of mine bring me new experiences, and new things to ponder. I wonder what our next adventure will be!

World Down Syndrome Day

2009-03-23T15:28:00.003-04:00

Although I'm two days late posting for World Down Syndrome Day, I didn't not want the day to slip by without comment from me.

I'm so happy that people from all over the world celebrate Down syndrome on March 21st. Its a wonderful feeling to share that kinsmanship with people I will never know, and with many, many people I have gotten to know simply because one tiny little extra chromosome happened in our lives some years ago.

Before I had Paige, and admittedly, perhaps even for a while after I had her, I never understood when parents who had children with disabilities would say they wouldn't change a thing about their child.

Surely, that must not be true. O.k., its easy to say that you love your child just as they are, but wouldn't you really want them not to have Down syndrome, or any of the other number of things that a tiny genetic blip could make happen in a body?

Just last week, when I was discussing genetics with my sister, she said, "well, of course, if there were some magic pill you could give her that would make her walk and talk and...."

Hmmmm....I began to think. What if there were a magic pill? Would I be rushing to get a prescription written? Excited to give it to Paige right away?

To be honest, if there were a magic pill that would have taken away the medical issues she has had - esophageal atresia, gall bladder problems, reflux, orthopedic problems, the list goes on and on and on...I may just sign up for it.

Because its never easy to see her hurting, to face another surgery, or another health set back. Its ingrained in my body as a mother to want her to be healthy.

But being "healthy" has very little to do with her developmental delays, or her extra chromosome.

I really have no interest in THAT magic pill. I truly do understand now what it means to love your just child as she is. I love every single part of her - her silly giggle, her sweet hugs, her goofy little ears, her starfish hands, her brushfield spots, her long skinny legs...

I love the good stuff and the rough stuff. I love how she has this intricate way of communicating with me that involves very few words. I love strolling through milestones, and jumping up and down with excitement at goals that have taken forever for her to meet, when I might otherwise have missed them completely had she raced through them.

I love the journey - the people we meet along the way - the experiences we have - the way the world looks a little more beautiful seeing it again from her eyes.

I love this little soulmate that God has given to me, keeping her just a tiny bit closer to me, tied to my heartstrings with a tiny little extra chromosome, that will allow me a few more years to claim her as mine, all mine.

I love the wings she will sprout, that will slowly let her fly away from me, and the beautiful eyelashes that will look back at me and flutter, and make my heart soar.

I love every single thing about her, and no, I would not change a thing. Not a single thing.

Dear President Obama

2009-03-23T15:22:00.002-04:00

May last week's "slip of the tongue" be a good lesson for you. Words matter. They can cause great joy, and great hurt. They can stop and start wars. It is never acceptable to laugh at or poke fun at a group of people the way you did.

Perhaps most bothersome is that what you said really was a slip of the tongue - something you said that you immediately realized was wrong, and needed to be taken back. Because that tells me that perhaps in the confines of your own space, when the lights are down, and you are just "you" and not the President of the United States, that you do make these kinds of jokes. People don't slip and say words that aren't part of their everyday language.

Certainly, you understand that your conduct must be beyond reproach. That "I didn't really mean it" isn't an acceptable answer.

A great many people in your country have embraced you as the President primarily for your stance on disabilities. In assuming this position, you have accepted the responsibility of setting a good example for the people of our country. Your words, as well as your actions, will be scrutinized.

I'm sure this is one mistake you won't soon forget. I think that's a good thing.

Spread The Word, To Stop The Word

2009-03-15T08:34:00.002-04:00

As John says, there is no nice way to use the word "retard." If you are using this word without thinking about it, consider some of the other words that you would never, ever call someone, and add this word to the list.

Please. Please consider how hurtful it is, how deeply ingrained the indignity is when someone utters it in a mocking tone.

If you know me personally, please do it for Paige. If you are visiting this blog because you have a family member with a developmental delay, please spread the word to your family and friends.

There is no shame in having a developmental delay or a disability of any kind. Trust me, some of the greatest human beings you will ever meet are ones that you may have just walked right by without even noticing or acknowledging. Do them and yourself a favor and see others as fully living and loving human beings, no matter what the differences.

Please stop using the R word - replace it with respect.

Loving Dave Hingsburger!

2009-03-07T19:37:00.002-05:00

There is a hole in this world that I fit into. It's an odd shaped hole. But its mine.

- Dave from Chewing The Fat.

As I said to Dave on his blog, I love the idea of creating my own hole in the world - rough around the edges in some spots, smooth in others, and then just kinda funky and groovy in others.

What Dave says is so true - each of us creates a little hole in this world through our words and actions, through our sense of humor, or our grumpiness, or our ability to love, or our desire to express an opinion or any other of innumerable ways.

I write often about Paige and sometimes about her differences - but her differences are really no more grand or more pronounced than anyone else's. Maybe they are a bit more visible to the general population, but in all of our striving to fit in, to be like others, I believe we all carry an innate desire to be distinct and memorable too.

Sort of like a carbon footprint, only maybe a little nicer, the hole in the world we create is up to us. Some of us will choose a nice, neat little hole, with smooth edges and not much definition. Others will leave a giant blast that says "I was here!" in enormous, eye-capturing ways.

I think our hole will be in the eye of the be"hole"der - as I can imagine that I would describe Dave's hole in the world to look differently than Joe would describe it.

Over the past few days, I've contemplated the people I know and what their holes would look like - a big variety of shapes and sizes, and edges to be sure. Yet, everyone has created something to be remembered - something distinctly theirs.

Perhaps this thought of Dave's - that we all have a hole in the world that is ours, is a great equalizer. I imagine none of the holes will say "this person's IQ was..." or "he stuttered" or "she had seizures."

Instead, just like I said to Dave, we'll see some smooth spots, and some rough spots, and probably something funky and groovy too.

Certainly, there are people like Dave who's little hole in the world will never be forgotten. And the rest of us will never be quite the same for seeing it.

Said by Dakotah...

2009-03-01T22:49:00.005-05:00

when I asked her if I could post these two pictures on my blog.

Dakotah: I hate when you post pictures of me on your blog, then everyone can see them.
Me: But you posted them on Facebook, and you have like 500 friends that can see them.
Dakotah: Yeah, but your friends are old.

So, my dear old friends, here's my smarmy daughter :)

Why do birds sing from up above?

2009-02-15T17:04:00.002-05:00

So, we were all at the mall yesterday, shopping and basically wandering around. We stopped at the food court to have lunch, and we were sitting there eating - Wayne, myself, Dakotah, and Paige, in her wheelchair.

Paige was pushed up to the side of the table with her back to the restaurant part of the food court. She was dressed for Valentine's day - with her big puffy white jacket on that has big pink and teal and blue and green and yellow hearts on it. Her hair was down, and she looked cute as a button, if I do say so myself.

As we are eating, this young man about 15 or 16 wheels by us in his electric wheelchair. He is very blonde, with striking blue eyes. He goes by us, and tries to get a glimpse of Paige - definitely trying to check out the girl who uses the same means of transportation that he does.

Because of the way she was facing, he couldn't get a good look at her. So he came back by. And then he went by again. And again. Finally, he parked himself half way across the food court facing us.

We were all like "omg, he is TOTALLY checking her out."

It was so funny, most especially because Dakotah was also with us. And if any of you have ever had a 16 year old daughter, you know the preparation involved in going to the mall - the contemplation of what clothes to wear, how to fix your hair, putting on makeup, selecting the right shoes - the list goes on and on.

No one seemed to notice Dakotah - but that boy sure seemed to want to get a good look at Miss Paige.

That's the 2nd boy in a month that has been sweet on Paige.

Look out, Dakotah, your little sister is gonna be competition in a few years :)

Happy Valentine's Day!

2009-02-14T09:16:00.003-05:00

Isn't it funny how the smallest events are the ones that create the sweetest memories?

We were just remembering some of our favorite Valentine's moments. There are, of course, those traditional memories, when Wayne and I were young, and he was trying to woo me - and would send dozens of roses to me leading up to Valentine's Day, with some really neat gift arriving on the day itself. Or the hours I spent madly in love with him 250 miles away, scouring the Hallmark stores for just the right card - and not, being able to decide on one, would send off many to him.

We were laughing because of all the sentimental ones we sent to one another, the only one we can actually remember the words to was one I sent to him that went like this: (sorry, adult content, lol)

Outside of the card: "Know what I like most about being your sex kitten?"
Inside of the card: "Playing with your squeak toy."

*giggle*

ANYWAY!!!

My dad was always romantic to my mom on Valentine's Day, and would always bring her yellow roses, her favorite, for that day. But, the last year he was alive, just a month before he died, he wasn't able to do much for her, but she brought him a little stuffed raccoon that was dressed in a sweater with hearts on it, and a little red mask, along with some candy.

The last day we saw him alive, Paige (not quite a year old) was laying on his bed with him, cooing at him, and just being near - and he showed her the raccoon. She was playing with it, and I heard him say to her, "why don't you take care of this for me."

She still has it, and needless to say, it is very, very precious to us.

When Dakotah was in Jr. Kindergarten, just barely 4 years old, she spent almost an entire week copying the names of her friends onto Valentine's Day cards, and signing them all. I remember she couldn't fit her whole name on one line, and she tucked the letters of her name anywhere she could fit them - too cute!

And one year, her and I spent hours and hours and hours cutting dozens of hearts out of pink and red felt, and then tying them with ribbons to her pants and shirt, and putting them in her hair for "heart day" at school - the class that wore the most hearts got a pizza day. I'm pretty sure she was instrumental in helping her class be the winning class.

On Paige's first Valentine's Day in school, she was in what we called the "black period" - her favorite color was black, and everything she colored was black!!! Our whole house was decorated for Valentine's Day in BLACK hearts - taped on cupboard doors, the refrigerator, every surface we could find. She sure colored a lot of hearts that year, lol.

Way to go goth, Paige. heh.

So...keep it simple today. Make a memory for your loved one. Write "I choo choo choose you" in lipstick on the bathroom mirror. Tuck a red paper heart in someone's pocket. Lift your little one's shirt up and cover his or her belly in kisses (note, this also works with husbands, lol). Trace a heart in the frost (or dirt) on your car's back window.

Be goofy and sentimental!

Happy Valentine's Day!!!

Looking up!

2009-02-05T12:32:00.002-05:00

I'm so happy that Paige is feeling better. Perhaps she will try school for a bit tomorrow, although she will most likely wait until Monday to go back.

Its not always easy being the navigator of this ship that sometimes takes us through rough waters. Especially with Paige's very limited verbal skills, I don't often know when she is feeling sick. She has an incredibly high level of pain tolerance, and does not indicate to me that she is not well until she is really not well.

I think I, and probably every mother of a child who is medically fragile, find myself in a constant battle with my instincts. Am I overreacting? Am I taking her symptoms too seriously? Am I worried about her having something really bad when its probably just a cold or a stomach bug?

Or conversely, am I trying to brush it off, hoping she will perk up in a day or two, and we can avoid a long wait at urgent care, or another needle prick, or yet another unpleasant procedure performed on my child who is already feeling miserable.

I don't want to be an alarmist. But I do find myself googling symptoms when she is sick. Could this be "it?" The inevitable shoe dropping that silently hides in the back of my mind - a constant reminder of just how incredibly lucky we are to have this little girl in our lives, how lucky we are that she has received such great medical care, and that she is working hard to thrive.

And...I don't want to be the mother that the doctor looks at in disbelief, that I didn't recognize how sick she was, that I hadn't been in a week before, trying to help her get better.

On top of that, is that maternal ache that every mother feels when her child is sick. I would take 10 times the sickness, 10 times the level of pain, in order to spare her a single moment of it. I fret and wonder, how long has she been feeling unwell? With her cast coming off, we expected some discomfort, and indeed, she has been grumpy and moody for a month now, something very uncharacteristic of Paige. Has she been sick this whole time?

When Paige was younger, I was actually more overprotective of Dakotah, because I always had this sinking feeling that I was going to be so in tune to Paige's medical needs, so on top of them, that I would miss something big in Dakotah, and she would become the child who's life we were begging God to save.

I tell Dakotah all the time that I'm learning to parent her just as she is learning to grow and become independent - that there is no manual, and that we must do the best we can do at this job called life. Each day brings new lessons, new worries, and new joys, and thankfully, most days the joys are so great that the worries and necessary lessons become just a small part of who we are.

I thank God that He has bestowed me with the gifts of my children - constant reminders to never take anything for granted, and to fall to my knees daily and thank Him for the splendor of what He has given me.

On the mend!

2009-02-03T13:59:00.002-05:00

Paige was back at the ER last night - this time she got some antibiotics and more medicine for her thrush. She is finally seeming a bit better - drinking good today, and is eating some goldfish (the crackers, not the animal!).

She seems to have a lot of different things going on at once - which is why the symptoms have seemed so willy nilly to me, I guess.

Her weight is also really down - from 60 lbs in October to 36 lbs last night - that's a lot of weight on a kid her size. So, we will keep monitoring that, and work on getting some meat on her little bones once she starts eating again.

Poor monkey was so, so sick...I'm glad to see her a little less miserable.

Still not feeling wonderful...

2009-02-02T13:51:00.003-05:00

Paige now has a really, really bad case of thrush. She seems to get this every time her body has a "trauma" of any kind - thick, heavy white crust in her mouth. The ER doctor told me yesterday that children her age don't get it - something other doctors have told me too, but she gets it...and often enough too. If anyone has any thoughts on why that might happen, please let me know.

She is drinking a litte bit, but only milk - I imagine the juice is hurting her mouth. The last solid food she had was last Tuesday. I'm worried about her, but was told at the ER yesterday that it was just something she had to get through. She slept for nearly 36 hours straight from Saturday night to this morning - only waking up when I woke her.

She is a bit perkier today, and has been awake a few hours, so I think she is on the mend, but its a sloooowwww mend, lol...

Poor sweetie...

Paige is so sick...

2009-01-30T15:10:00.002-05:00

She was finally perking up after having her cast removed, not as grumpy and stiff, and now this!

She still can't really push herself up to sitting yet, and is barely able to roll from side to side, and then three days ago, she came down with a bad cough - really yucky sounding lungs, but no runny nose or anything.

She had been vomiting when she choked on mucous for the first couple of days, and now she is vomiting as soon as she has as much as a sip of juice. She isn't eating or drinking at all, and is so listless and just looks really, really sick.

She is still peeing, so she isn't dehydrated yet, but she is one sick little kid...

Early for Wordless Wednesday, but...

2009-01-20T18:48:00.001-05:00

Wow! If we can only embrace this feeling of hope for a very long time...

Said by...

2009-01-19T17:23:00.002-05:00

Paige's buddy, Chayce, when she arrived at school this morning, the first time since October...

"PAIGE IS BACK?? Um, I forgot how cute she is, can I be her boyfriend?"

Delivered with a big set of dimples, and a sweet smile, who could say no, lol...

Freedom is...

2009-01-13T09:29:00.002-05:00

being able to wiggle your bum back and forth, and scratch your own kneecap!

At least that's what Miss Paige would tell you freedom is! Her cast came off last Thursday. Finally...it is behind us. Forever, hopefully.

These first few days have been rough for her - as her muscles are reacting to being out of the cast and she is having a lot of tremors. She is incredibly stiff and doesn't want to be moved around too much just yet.

And her skin is pretty gross. When the cast first came off, we couldn't even wipe it because it would peel off when it was rubbed. Now, its getting a bit crusty and crackly. I didn't know this until her cast came off last year, but skin actually regenerates inside of a cast similiar to the way it grows in the womb - a moist environment that makes it like newborn skin.

She is even covered in a fine layer of hair, like a newborn is - and its very funny, because its exactly the shape of the cast - from her ankle up on one side, from her knee up on the other. Even the little hole that was cut out for her belly is not furry, but everything else is.

She's still very unsure of herself, and is just starting to sit up - she had her first bath on Sunday, and I think it felt wonderful, because she was anxious for another last night.

She has a hard time regulating her body temperature, as the cast was sort of an insulator, so she doesn't like being cold at all!

So, next week, she will try half days at school to see how it goes. She will go in her wheelchair for now, and we are getting a walker for her, that she will be able to start using within the next few weeks. Her surgeon guesses it will be between 9 and 12 months before she starts walking independently, which I think is a good estimation - she was just, just starting to take a few steps before this last surgery.

She has been a bit tempermental, which is soooo unusual for Paige - pretty demanding and hard to please, lol. But each day is getting a little better, and hopefully it won't be long before the last two years are just another story for our family to tell.

Thanks so much for all of the well wishes and prayers - they surely helped!

Another year over...

2009-01-04T23:23:00.003-05:00

and a new one just begun.

Tomorrow marks the official end of our Christmas holidays. The routine begins again, as Dakotah heads back to school, and Paige and I settle in for a week of appointments and housecleaning, and trying to get some work done, all while making sure there is plenty of snuggle time for us.

After a few days of post holiday let-down, I'm ready to start the New Year. It will be the first year since Paige was born that we are not anticipating an upcoming surgery, and I'm anxious and excited at the prospect of settling back into our lives without this hanging over our heads.

On Thursday, fingers crossed, she will get her cast off. And thus will begin an anticipated year of rehabilitation for her, as her muscles work to regain their strength, and her new hips learn to support her, and she starts taking those first tentative steps yet again. Its been 15 months since she walked independently and, God willing, these surgeries will pay off, and she will conquer that skill again one day.

She has flourished in her cognitive skills while she has been in the cast. Its been fun, and amazing to see how quickly she is learning and picking up new things. She is fascinated with words and letters and reading, and I'm so, so happy about that. A lover of words myself, and someone who can get lost in books for hours, I'm so happy that she too cherishes books and words.

Paige has never been one that has leapt through milestones; instead, she meanders, and takes her time, stopping often to linger over the tiniest new task learned for months and months before moving on, so this has been an unexpected and delightful surprise for us.

As I should have learned already after nearly 16 years of parenting, you just never know. You never know what the next day will bring to you, what the next challenge will be, or what the next celebration will be.

Both of my children remind me daily that there is no roadmap to this thing called parenting - there is no anticipation of what will work in six months, there is only now.

This year has been a big year of learning and growing with Dakotah as well. As I watch my oldest daughter grow into an amazing young woman, I have had to refine my Mom skills many times this year.

The balance between trying to keep an honest, open relationship with her, one where she feels that she can come to me, and talk with me about anything, and trying to remain the parent, the one who sometimes has to say no, or be strict is not often easy.

There are no black and white lines, and the greatest wisdom I have gained over the years is the ability to think before I speak or act. Not always an easy task, sometimes analyzing a situation for a while makes the judgement a bit clearer.

The challenges to a young woman are great, and she is handling them all quite well. Its very hard for me to want her to have the very best time of her life during her high school years, and at the same time, wishing she would just stay home with me, and let me tuck her into bed at 8:00 like I used to!

I constantly lecture her that we all make mistakes, but there are mistakes and then there are mistakes. A dumb mistake is saying something to a friend and hurting their feelings needlessly, and then having to make amends. That is a mistake of growing up; and there are lessons to be learned.

But, some mistakes can never be corrected; getting into a car with someone who has been drinking; putting yourself in an unsafe situation, etc.

Little by little, I have to both guide her and let her go with nothing but a fervent prayer that she will make wise and good choices.

I have definitely learned to "pick my battles" as any experienced parent must do. She has rules that she knows she cannot break; and some that she knows she can probably persuade me to bend a little too.

Last week, she finally talked me into allowing her to get a "monroe" piercing...a tiny little diamond between her nose and her lip, just to the left. A year ago, I would have NEVER thought I would have allowed it, but she has researched it and paid for it herself, and is taking good care of it, and I know, when its all said and done, if the worst thing she ever wants to do in her teen years is staple her face, well, so be it, lol.

She has handled the challenges of being a teenager so well; getting good grades, having good friends, making good choices. I'm so proud of her.

I wonder what these two silly, crazy, wonderful daughters of mine have up their sleeves for 2009 - what they will challenge me with, what they will surprise me with, what will make me cry and what will make me laugh.

I hope I will be calm and wise, and have all the answers for all of the challenges they present to me. Most likely I will not, and I will learn right along with them about this life of ours.

One thing I know for sure. They always, always, always know they are loved. Without exception. Without condition. Without hesitation. Without reservation.

With everything that I am, perfect and imperfect, they are loved.

I'm The Mom!!

2008-12-15T09:40:00.000-05:00

Almost there!

2008-12-08T03:11:00.005-05:00

One month from today, if all goes well, Paige will have her body cast removed. In total she will have spent more than 6 out of the last 14 months in a cast, unable to sit up or roll over, or do much of anything other than lay somewhat flat on her back, with her legs suspended in the air.

To say that this would break the spirit of most of us is probably a grand understatement. I can't imagine the frustration of not being able to move; not being able to scratch an itch, or reposition myself while I sleep, or sit up to watch t.v. or eat dinner.

I can't imagine anyone in our family having the courage and strength that Paige has had throughout this ordeal. I have trouble sitting still long enough to post my blog, or watch a half hour television show.

Dakotah would certainly spread the misery around - she would be so bored and so frustrated, and wouldn't hesitate to take that out on ME, lol. She'd be the kid that wanted the bell next to the bed so she didn't have to wait 8 seconds for anything. And by about day 3, I'd be ready to take that bell and hurl it as far as my arm could throw it.

Ditto to how Wayne would handle it.

Its even more amazing that Paige has such limited verbal skills and is really unable to understand the "why" of this cumbersome cast, and yet, she still takes it all in stride. Her entire world changed virtually overnight. She went to school one day, played with her classmates, did her work, and then the next, she went to the hospital, fell asleep, and then...THIS.

She is one of the most gracious human beings I've ever known. Every single morning she greets me with that sweet little voice of hers. She smiles at me as I bend to hug her and talk with her, running her hand through my hair, taking the inventory of the familiar things she loves - checking each of my ears for earrings, looking for Kirby who has inevitably come into the mix, wanting some attention.

Her day is quiet, no noisy classrooms, no assemblies, no preparation for the Christmas play.

But, every single day from her quiet comes respect and adoration from those of us who love her so dearly. She lays on a blanket on the floor, and we all clamour to be near her - to talk with her, and adore her and help shorten her long days.

And inevitably at night, when its time to go to bed, Dakotah will be the one who wants to sit next to her and tell her all about her day, and what she has done. And then, more often than not, Dakotah will sing to her; almost always Beatles lyrics, from her favorite movie of all time "Across The Universe."

And Paige will join in - singing her lungs out with nary a real word spoken - just holding her big sister's hand, mimicking the rhythm's of the music with short syllables, dah dah dah dee dah, ma ma ma ma ma.

People may look at our family and think us very far from a normal family with typical happenings.

For that, all of us thank God every single day.

'Tis The Season!!

2008-12-01T23:04:00.003-05:00

So, now that American Thanksgiving has passed, I suppose we can officially begin to celebrate the Christmas season.

Sunday night, we bundled Paige up in her coat and blankets, put her flat out in her wheelchair, and went to our town's annual Christmas parade. She was so happy to get out of the house and see some noise and excitement. It did her so much good to get some fresh air - she was in such a great mood when we got back home.

We're still sort of halfway through putting Christmas lights outside - no matter how early we start, Christmas seems to jump up on us.

Almost always, I get a good old fashioned case of the blues just before Christmas...I've had a lot of "stuff" happen over the years in the weeks before Christmas - two miscarriages, my dad being diagnosed with terminal cancer, Paige's prenatal diagnosis, etc...

So, I think I somehow got myself stuck in a bit of a rut. When something bad didn't happen, I felt apprehensive and nervous that it was just around the corner. I always felt sort of a desperation to make every Christmas the best ever - and I always felt a bit out of control about it as well - that no matter how well I planned, how many lists I made, how many gifts I bought, how much cooking I did, how many promises I made to God, that as soon as I let my guard down, I was going to get it and get it good.

I'm not sure what is so different about this year - but so far I've escaped that feeling of dread. Perhaps its because Paige has had what we are hoping will be her final surgery for a very long time, and we can actually see the end of the tunnel to the Escape of The Body Cast. Perhaps its that even though I miss my dad like I do every year, I feel him very much with me this year...in a very happy way.

Or maybe its a combination of little things that are making this a good season. My children are healthy, my dog is so dang cute, we are doing well as a family, I have good friends, one of whom actually works with me in the office I where I work. I really like my job, and I have a funny, crazy boss, who never stops entertaining us.

Whatever it is, on this December 1st, as we head toward Christmas, I'll take it, and I'll remember to be very thankful for it...

****
Please pardon any funky colours on my blog - I am waiting on a new monitor - this one is dark and not very precise - I'll fix everything up nice in a few days!

My funny girl

2008-11-14T08:59:00.002-05:00

Dakotah loves it when I tell her things about when she was little. I was telling her some yesterday, and we had a good laugh.

~~~~~~~~~~~~~~~
Dakotah, age 2, in her car seat on the way to the store: "Man, I gotta shave these legs."
~~~~~~~~~~~~~~~~~~~
Dakotah, age 5, writing a story for school (Catholic school, btw) about what she did that summer, "Hey, Mom, how do you spell lesbian?"
Me: "What?!"
Dakotah: "How do you spell lesbian?"
Me: "Why do you need to spell that?"
Dakotah: "Because I'm writing about when I visited my family in Lesbian, NH"
Me: "OOOOhhhhh, you mean LISBON, NH!"
~~~~~~~~~~~~~~~~
Dakotah, age 3, as I'm getting ready to go to a baby shower, "You look pretty, Mom, just like MiMi on the Drew Carey show."
~~~~~~~~~~~~~~~~~~
Dakotah, age 4, after discovering she had eaten all the heads off the animal crackers in her box, "I was saving the bodies for later."
~~~~~~~~~~~~~~~~~~~
Dakotah, age 2, attending Mass, "Hey, who's that guy up there on the letter T?"
~~~~~~~~~~~~~~~~~~

Paige always wows her audience!

2008-11-07T08:21:00.002-05:00

Yesterday we had a follow up appointment at CHEO - Paige now had a big bar between the legs of her cast for stability. Now, I have to come up with some creative ways to get pants on her!

Anyway, in the afternoon, Wayne's mom came to visit us. She is in her mid-70's. She was so excited when Dakotah was born - the baby girl she never had. She doted on her, and spoiled her and was so proud of her she about burst at the seams.

When Paige came along, there was a bit of adjustment that she needed to do. She was older, had never really known anyone with Down syndrome, and came from a time when families didn't really talk about such things.

She never loved her less, or fussed over her less than she did Dakotah, but there has always been an air of ...sadness, I guess. A little tug of pity in her heart when she thinks about Paige, and mulls over what she thinks "could have been."

And, I'm sure she has had a hard time with lots of her relatives - trying to figure out what to say and how to approach the fact that her granddaughter has T21. To be honest, she isn't very well educated on it, and still probably holds out many myths and theories about why Paige has T21.

When she got here yesterday afternoon, I was sitting on the floor with Paige, working on her alphabet, some letters, and a few words.

You could have blown Wayne's mother over with a feather. Time and time again, Paige identified letters and words, put the right letter combinations together to form words, and answered most of the questions I asked her successfully. Not too shabby considering Paige's spoken vocabulary is probably less than 10 words.

She beamed with such pride at Paige, and fawned over her, telling her over and over again how smart she was.

I'm pretty sure she doesn't know that most children with T21 read. In fact, I'm pretty sure she left our house thinking Paige was the ONLY child EVER with T21 to read, lol - you know, because it IS her granddaughter after all.

It was a very cute, funny moment to see -

Most People Can't Tell

2008-11-04T15:51:00.002-05:00

So, I made a major blunder today.

While waiting in line at the Post Office to pick up a package, I see a totally adorable tiny little boy with bright red hair, and big blues eyes who has Down syndrome. He is a sweet as can be, and is waving at people over his Mom's shoulder. My heart melted like butter!

After I picked up my package I went into the lobby of the Post Office, and there he was - sitting on the table while his mom was writing a note. I went over to her, and said, "I have to tell you how very gorgeous your son is - he is just adorable." She looked up and smiled and said "Thank you."

Then, I said, "I have a daughter with Down syndrome too." Her whole faced changed, and she says, "Most people can't tell he has Down syndrome."

So, what does one say to that? I floundered through, and just told her he had caught my eye because he was so cute and so sweet the way he waved at everyone. He was adorable, perfect, sweet...and he had Down syndrome - all very positive and happy qualities to me.

I asked his name, and spoke to him, he was very lively and very interested in catching my attention. Then she asked my daughter's name and when I told her, she relaxed a bit - she recognized me from the Parent Pak she got when her son was born.

We chatted a bit about his birth; he spent a bit of time in the hospital with duodenal atresia (I told her Paige had esophageal atresia, and she replied "oh, they all do." - strange...)

The timing of meeting this little boy was perfect for my blog post today, as I have been composing a post inspired by one of the moms on one of the Trisomy boards I visited, where she asked for "bits of advice" from parents of older children with T21.

I will write more on these nuggets, but here is one suggestion from an "old pro," lol.

Its so important to take away the "stigma" of Down syndrome, if you will. There is absolutely nothing wrong with your child looking like he or she has T21, and the truth is, if he or she does have it, most people will recognize some of the physical traits on your little one. These traits are no more important than hair color or eye color or any other physical feature your child may have.

My advice, for what it's worth, is to make talking about Down syndrome as easy as talking about what's for dinner - that means talking to other siblings about it, bringing it up appropriately in conversation, getting your child with T21 used to the term Down syndrome, etc. No sibling is too young to understand - Dakotah was just 3 when I was prenatally diagnosed - and we played the "same & different" game with her - she had the same color eyes as her dad, but different than me, the same hair as me, but different than dad, the baby had Down syndrome, she did not.

People will approach you and ask, and you may feel offended or caught off guard, but having had a child with Ds for 11 years, I can tell you that 99% of the interaction I have had from strangers has been very positive - lots of people have shared stories about people they know with T21 with me, many, many people have stopped me just to admire Paige.

There is nothing wrong with having Down syndrome, and trying to tuck it away makes it taboo - and it shouldn't be.

And if my advice doesn't matter, learn from Dave Hingsburger, who says, "If your child has Down syndrome, you better tell them and their siblings - or someone else will."

We are home!

2008-11-02T10:12:00.002-05:00

Paige had her surgery on Tuesday. It went smoothly, although it took a bit longer than the last one - she was in the OR for nearly 8 hours. Last time, we had a really, really hard time with pain control after the operation - they just could not get ahead of it, and she was really out of her mind with it those first 8-10 hours afterward. I was very worried about that.

This time, the anesthesiologist did an epidural before they even began the surgery and what a HUGE difference it made. She woke up comfortable, and not so frightened. We were able to go into a regular room and it was just so much less panic.

Her surgeon is amazing, and I'm very grateful to him, but I gotta say - those anesthesiologists rank right up there - they are the ones who hand out all the good drugs, lol. I was also able to have a good chat with the head of the anethesiology department the next day - and told her how different the experience was this time, so maybe they will keep that in mind if any other little ones need this surgery.

So, the cast is back, of course - from ankles to armpits. She feels soooo heavy this time - I really cannot lift her by myself anymore. I think they coated her with lead before they casted her, lol.

She is doing o.k. - just getting back to eating and drinking a bit, and complaining a lot!

We got a freak snowstorm the night of her surgery - high winds, 6-8" of snow, crazy weather that Wayne had to drive home in late that night. We had just cancelled our appointment for snow tires, because her surgery date got changed.

We are snuggled up at home until she gets better, probably 8-12 weeks or so. She very much wants someone right beside her all the time - there was so much activity in the hospital and so many people poking and prodding her, that I think she wants someone standing guard for her. Poor kid, she'd hear a cart coming down the hallway, and she'd say, "all done, all done" - afraid they were coming for her.

She had a sweet little roommate named Jenna, that had a very unusual life story - I'll write more about her, but I have to wrap my brain around all of it - its one of those stories that make you rethink so many things.

Thank you everyone for all of your thoughts and prayers - we felt them all. Big hugs to those of you who have had really tough weeks - especially Tara Marie - I'm thinking about you, and know you will love Greta through the hurt.

My buddy & me...

2008-10-24T14:10:00.004-04:00

Paige will go in for her second hip surgery on Tuesday. I'm not looking forward to it, but I'll be so glad when its done and behind us. Together, the two of us can do just about anything...

We'll be at CHEO for most of the week next week...please keep us in your thoughts!

If Only...

2008-10-21T10:58:00.002-04:00

It's shameful to hear about the cost of our political campaign. The numbers are absolutely staggering - millions of dollars in private donations to Obama, and public funds for McCain are nothing short of insane.

I know its somewhat necessary, and campaigning does cost money, but my mind swims with the possibilities of places where these funds could be so beneficial.

It seems like Obama may very well be our next President - hopefully all of the private sector people who have donated so much money to ensuring that will happen will continue to donate to important causes and programs to get our country back on track. And hopefully Obama will put that money where his mouth is, and we will see the fruition of the promises he has made during the campaign.

Take a Deep Breath In...

2008-10-17T02:06:00.008-04:00

and then...let it out.

In the time it takes us to take one single breath, that's the amount of time it takes our children to grow up.

Today is Dakotah's birthday. To say it seems like yesterday that she was a newborn, that I was holding her, and memorizing her for the very first time is an understatement.

Dakotah has always been such a wonderful child to raise. Beautiful and smart from the very beginning - her video of her first birthday shows her saying "Oh, wow, I like it" so clearly. She potty trained at 18 months in a matter of 4 or 5 days - simply announced that she didn't need diapers anymore, and that was that.

My first and only child for 4 years, we spent hours and hours and hours together, lavishing over her every accomplishment. She was my greatest playmate, and I could not get enough of her. Every day, we would work on a craft project, or go for a walk, or do puzzles together, or play school.

When she slept, I would count the minutes until she woke again, missing her and eager to have her near me again.

I would tell Wayne over and over again that we had won the child lottery - that God had blessed us with the perfect child. What an awesome God He is to have blessed us with another winning ticket 4 years later.

How fast the years have gone by, like time lapsed photography, like the guy who took a picture of himself every day for 17 years.

Now, she towers over me, 5'9" of legs and a heap of hair, and a body that would easily pass for 3 or 4 years older than she is already. Still smart and funny and pretty, and every bit a teenager. She rarely travels in anything but a pack of other teenagers, giggling girls who love to shop and spend hours on their hair and makeup, and yes, even the occasional boy or two who infiltrates the sisterhood of girlfriends.

Soon, she'll be begging for the car to go somewhere, leaving me with a twinge of reality that it won't be long before she is off to university, where she plans to study to become and Optometrist or a Speech Pathologist.

Another deep breath, and I'll be writing about her graduating from University, about some fine young man that has swept her off her feet, and how beautiful she looks on her wedding day. A blink of an eye, and I will be holding a grandchild, and telling her that it just doesn't seem possible that this baby isn't her, that we aren't transported back to 1993 all over again.

Soak in every single moment of your child's life. There is no better way to live your days.

Happy Birthday, Sweetheart.

A Ray of Light...

2008-10-15T11:37:00.007-04:00

  “Dwight (Uncle White-in our house), was (and still is),

someone who could bring a sense of contentment...

when we didn't feel we had it, or perhaps didn't feel we

deserved it.  He had the ability to put a light in

our souls - perhaps in places that we are so bruised....

that we didn't think there could be any light.”

This above quote is from Jen, a member of Dwight’s family. When I read it, I thought that she beautifully put into words what so many of us feel about our children and family members with T21.

I write often about Paige having a visible soul – one that I can see when I look at her, so strongly that it was the first thing I noticed when she was born.

We talk about purpose driven lives, and I have always believed that Paige’s purpose is very clear, and very distinct. She will, and has, touched so many people’s lives, and has quite literally, saved a few along the way.

For me, just as Jen has said, she brings an incredible sense of contentment. When life is feeling chaotic, and crazy, and out of control, her arms around my neck, my face in her hands as she looks at me and talks with me make everything better. I truly adore this child – in such a way that my heart fills every single time I see her.

And when my soul is bruised, and my heart is hurting, just being near her makes it so much better. Just sitting with her, beside her, and feeling the strength of character and power of her soul heals me.

She is unencumbered with so many of the fluffy details of life, and that makes her so much more aware of the important details.

She makes those around her think about their world differently. Just this morning, as I was helping her get ready for school, she stopped to snuggle with Kirby, when all of the rest of us were hustling and telling him to lay down.

Every day when she gets off the bus, she refuses to go into the house until she has watched her bus go down the street, turn around and pass by our house again.

I wonder if these qualities are distinctly related to Trisomy 21, as I get that same feeling from Paige’s pals Emma and Livee when I’m around them…a warm, happy feeling that makes me feel like I have arrived…home, safe and sound, and surrounded in love in a way I never knew existed.

Think of Me First As A Person

2008-10-06T13:09:00.004-04:00

" Think of me first as a person who hurts and loves and feels joy,”
--Dwight Core Sr.

Many of you will remember the story of Dwight Core Jr., Dwight's father had made home movies of Dwight as a child, and they were left in a cardboard box for years. Found by Dwight's nephew; he created a movie documenting Dwight's early years called "Think of Me First As A Person." This film was accepted into the Library of Congress, and became very well known among those of us who's lives have been touched by T21.

Sadly, Dwight passed away last Wednesday at the age of 48. He was very loved by his 4 sisters, and many friends and family.

You can see the film here and visit Dwight's website here.

All of my prayers to Dwight's family, especially his sister Patricia, whom I have come to know since the creation of this film.

You were a movie star indeed, Dwight!!

In the beginning...

2008-10-06T02:58:00.002-04:00

At the start of our family's journey of raising Paige, I created a webpage to document her life, and the adventures her first years took us on. There was no blogging at the time, and everything had to be written in html. It was fun creating backgrounds, selecting music, and "getting it down."

If you'd like to read about our humble beginnings on this amazing life path, check out the original Bits of Betsy.

Blogging for Down Syndrome!

2008-10-02T12:11:00.002-04:00

Ok, so I'm off to a rocky start! Once again, I have committed to blogging each day in the month of October in recognition of Down Syndrome Awareness Month. And...its October 2nd, and this is my first post ;)

Life so gets in the way of documenting our life!

Paige has been to CHEO several times in the past few weeks. At first she had some bloodwork come back funky, and we thought she would need to be transfused. But after some retesting, everything seemed to stabilize.

And then she had regular appointments, her vision and hearing tested, a trip to the dentist, etc. Yesterday she had a barium swallow to look at her esophagus. She's been having a bit of trouble eating lately, and we just want to make sure everything is o.k. before she heads into surgery.

Her surgery date for her hip is November 4th. Ugh. I am really dreading it. It will mean a full body cast for another 12 weeks or so for her. Its not so much that its because its obviously a lot of work, and that she can't go to school, or any of those things.

Its more that Paige is really not able to understand why she is going to go to the hospital, and then wake up in a body cast again. Its that nagging Mommy fear that she will somehow feel like she is being punished, that she has done something wrong to deserve this, or whatever. Its that I can't know what she is really thinking about it, and I can't explain the "its for your own good" concept to her.

Its that mom thing that would willingly take twice as much hurt and inconvenience to save her just half of what she has to go through.

At the same time, I'm also so grateful and so thankful that so far, all of her "boo-boo's" have been fixable; that there are amazing doctors that have laid their hands on her, and with the help of God, kept her healthy and alive and with me.

Every single day, without fail, she comes to me, and just soaks me in. Without a word, she will hold my face, and run her fingers through my hair, and just look into my eyes, with such love and joy and innocence, so unassuming and so in the moment. She will listen as I talk to her about her day, and laugh when I sing to her, and babble away to me the way she often does.

Its as if her body is transparent, and her soul visible. I have never, ever lost that feeling that I had the very first moment I laid eyes on her - I remember saying, "I can see her soul" while we were still in the delivery room, and now, 11 years later, that is still so true.

Every day, someone is touched by her, every day I tell a sweet story about her, or someone tells me something funny she did, or something nice she did for another classmate of hers. Wherever we go, kids recognize her and speak to her, and exclaim excitedly to their parents, "LOOK! There's Paige!"

Sometimes, we talk about having "feather" moments - when a little feather floats into your busy day just to remind you of something bigger than you, greater than you - and it brings back a wonderful memory, or fills your heart with happiness for a moment, or simply offers a deep breath to carry on...

As I sit and type and look out my window at the gold leaves falling from the tree, I think about Paige, and know that this is very much her destiny, and thank God, mine as well. Just like that tree, her beauty takes my breath away, reminds me of how blessed I am, and lets me know that all things are renewed.

What an amazing girl she is.

Indeed.

Difference is An Artist's Game

2008-09-11T20:14:00.001-04:00

Simply beautiful...

I Never Understood This

2008-09-09T22:26:00.002-04:00

So obviously, the race for President has caught my eye and my interest. One thing I never really understood is the desire for either party to "diss" the other. And yes, I have sat here for 10 minutes trying to find a better word than diss -which is probably not even a word, and if it is, I'm probably too old to be using it.

I really don't get the television commercials from McCain's camp telling me what is wrong with Obama and from Obama's camp telling me what is wrong with McCain.

Quite frankly, I'm hoping one of them will convince me to vote FOR them, not AGAINST the other guys. Our right to vote is far too important to exercise than to waste it on the lesser of two evils - we have the responsibility to vote for the candidate we feel is right, not the one who is less wrong.

Don't waste your time and money campaigning against your opponent; spend your time campaigning for yourself.

Perhaps its because I can relate to her so much as a mother and a woman, and perhaps because she has a child with Down syndrome, but so many people have felt compelled to share their opinion of Sarah Palin with me.

I am terribly undecided now, and her nomination certainly does not "seal the deal" for me, so I don't believe that I am particularly defending her over anyone else.

But, geez Louise, I've seen some funny ironic, not funny haha, stuff about her in the last week. One of the first comments that struck me was the big announcement that her speech was written for her. Speech writing is big biz in the political world, and I would venture to guess that not too many speakers at either convention wrote their own speeches without any help.

And then there's talk about how is she possibly going to raise a family and be a good Mom if she is VP. Probably much the same way Obama is going to raise a family and be a good Dad if he is President. Are we really that archaic that we think that she cannot do both?

Shouldn't we worry more about the mom who is working two jobs just to feed her family? Who is barely making ends meet, and who has no choice? Perhaps one of the considerations of our vote should be how to help that family; how to make their lives a little easier and a little safer.

And, of course, there's Trig. Probably most of my friends who have children with T21 have watched her a little more closely and with a little more scrutiny because she is one of "us."

Certainly, being the mother of a child with special needs does not make you a superhero. It doesn't soar you above other moms, or instantly impart you with amazing infallibility. Some rise to the ocassion, some do not.

Will she be supportive of families raising a child with special needs? Will she be the answer? I don't know. I don't know if Obama will either - one of the reasons I am still undecided.

But, at the very least, I hope she has brought to the forefront one very important lesson for people to see. Families that love and embrace a child with Down syndrome are just like other families - perfect and imperfect. Life goes on, and we each embrace our own sense of normal and adjust life as we need to - but we do that for each child we welcome, regardless of chromosome count.

I've read blogs where people have said she will never understand what it is like to be a typical mother of a child with Down syndrome; after all, who is going to deny the governor, or the Vice President, services for her child?

But, you know, there is also some alienation that she will experience that us "regular" moms will not. Most likely, she will not be showing up for playgroups without being recognized; she won't be able to freely post on a public board for support like I do.

She is very early on in the journey to raising a child with Down syndrome; but I suspect she is feeling the same things that all of us felt at that stage - trepidation and joy, all at the same time.

Regardless of where this campaign takes her, I think it will be a good thing for the Down syndrome community.

I enjoyed watching her speak; I like her feistiness, and that "I am woman, hear me roar" attitude. I like that she shook things up a little.

I hope that she is not dismissed for any of the reasons I've seen her criticized for - dismiss her for her politics, not because she is a mom, or a woman or the mom of a child with special needs.

In the meantime, I have no idea who in the heck I will vote for. And I am so waiting to be convinced...

Its Getting Interesting!

2008-09-05T10:17:00.002-04:00

When I was in my 20's, I participated in a series of political forums with the company I worked for in New Hampshire. Our company hosted many presidential hopefuls in the 1988 open election, and I was able to meet virtually every candidate that was running that year.

Having security clearance, and being among the organizers of the event, I also had the privilege of the "after parties" if you will - where the candidates sort of let their hair down, hosted a more private party, etc.

Needless to say, I became a bit of a political junkie - young, and full of great hope for what the future would bring, I was fascinated by the candidates, aware that much of their success had to do with charisma, and very ready to argue with anyone who disagreed with my political viewpoints.

I remember that my father was completely opposite in what I believed in at the time - he a conservative who believed in patriotism and fighting for freedom of your country, me, a know-it-all liberal who thought sprinkling the world with daisies and peace signs would solve everything.

The real truth is, the real solution is probably somewhere in the middle, and as I've gotten older, I realize that.

I'm following this campaign with great interest. Its very different following American politics while living in Canada- as I truly have an "American" viewpoint of politics and my friends and family here do not. Its funny that the two countries can be so similiar, yet so different in how they approach issues.

I can barely stand to watch the conventions in the same room as Wayne; he drives me crazy with comments and how he sees things so black and white. He thinks everyone is showboating, and doesn't believe any of it.

I still hold that hope for our (my) country and our world - that there is greatness in our future, that there are people of altruistic nature who can lead our country.

Now...to just figure out who that might be!

Always a democrat in my younger years, swayed toward the republican party at some point, and now - standing in the middle without a solid decision made. I am watching and waiting, and trying to decide with as many real facts as I can gather.

But, I have to tell you, there is one ambassador that has caught my eye, and would capture my vote and my heart in an instant - one who will probably make a better impression and better difference for this world than any of the real candidates combined will ever do.

And...he's got really nice hair :)

You are absolutely adorable, Trig Palin - and so is big sister Piper.

Its My Favorite Time of Year!

2008-08-26T13:08:00.002-04:00

I love this time of year - with autumn soon arriving, you can feel the change in the air, if not during the day, certainly at night when the sun goes down.

My girls will be heading back to school next Tuesday; Dakotah in grade 10 and Paige in grade 5.

We've had a pretty good summer, filled with lots of rain, lots of baseball, a balloon festival, a trip to a drive-up zoo, a drive to NH, and lots of other fun things that have kept us busy and made the summer fly by.

Paige's surgery is scheduled for early November; so this winter will be a sort of deja vu of last; but it will be behind us eventually, and we'll be all the better for it, save a few more scars for Paige and a bit more gray hair for me.

Summer has seen Dakotah's hair go from dark blonde to brown to brown with lots of highlights in it. I did manage to escape the "Marilyn Monroe" lip piercing she wanted - so far. She is excited to go back to school, and has been busy with some end of summer parties lately - and boy, the parties are evolving from girlie sleepovers that she had in 7th grade, with lots of giggling and eating junk food to more grown up parties with - gasp - boys and girls - and "hanging out."

Hanging out generally means lots of doing nothing, but makes this mom nervous sometimes, as, contrary to her beliefs, it wasn't all that long ago that I was a teenager, and I can remember all the trouble we could conjur up when one or more of us were gathered with nothing much to do.

Paige could have had surgery as early as September 16th, but I elected to put it off for a few weeks to allow her to have some back-to-school time with her friends, and to get some of those appointments we missed last year in - dentists, pediatrician, eye doctor, etc.

She has a cute little outfit all ready to go back for the first day - she has started looking more grown up over the summer, and her teachers and her aide are going to find a big difference I think.

Anyone who ever said she would be my little girl forever was sorely wrong, as she is starting to blossom into a young lady too. She will be returning to school wearing her first bras - cute little striped pullover-the-head ones and ones with flowers and bows and all things precious on them - its absolutely too sweet and too cute to see them on her.

I was very surprised a couple of weeks ago when she got her first period. She is just a tiny thing of 62 lbs, and is just 11 - I thought it would be a couple more years before that arrived, but surprise! She is actually earlier starting than Dakotah was, even though Dakotah was nearly twice her size at this age. I guess not everything is delayed when you have T21 ;)

We've been school supply shopping - my favorite kind of shopping to do! I love new pens and pencils, and markers, and notebooks and all the fresh new things that hold the promise of a brand new year full of learning for everyone.

Hi ho hi ho - its off to school they go!

We're back from our mini va-kay!

2008-08-10T23:02:00.002-04:00

Dakotah left to go to NH with my sister, so its just the three of us this week. It always surprises me how much I miss her so quickly. To think in just three short years, I'll be sending her off to university - it seems too crazy to even comprehend. She is trying at times, and can sometimes push all of my buttons, but I love her so much and really like her as a person. If we were just two 15 year olds, (or two 44 year olds for that matter!), I think we would be best friends.

We went to Parc Safari - a place where you roll down your windows, or open your van doors, and the animals come right up to see you. It was pretty neat having deer, yaks, zebras, giraffes, ostriches, alpacas, and a whole host of other animals stick their heads right in the back seat! Paige loved it as you can imagine.

Being away from home was interesting this time. Paige is still having to use her adaptive stroller when we are out - she walks holding our hand but only for very short distances. It was funny to see how many times Wayne commented that places weren't very accessible - he doesn't often take her out for errands or places where he has to go in and out of a lot - so he was quite surprised when something appeared accessible, until there was a lip on the sidewalk, or a doorway not quite wide enough.

We shopped in a huge mall, and for the first time in years and years, I was very aware of people doing a double take when we walked by. Kids and adults alike would turn around and stare or look at Paige for a few minutes - it was very strange, as I haven't noticed this at all for a very long time.

I really think it was more that she was in her stroller than it was that she has T21. I actually wonder if it is because she doesn't initially appear to have anything wrong with her, and that's why so many had to stop and look - she just looks like an older kid in a big stroller!

We never felt offended by it, just curious to why it seemed to happen so much this last week.

I think, too, that I am more aware of her differences since we had the meeting with Dr. Doyle. Or maybe its because she is really starting to grow into a young lady that I'm thinking about it a lot. I sure miss that baby of mine!! I tell you, when people say silly comments like, "she'll always be like a child," they really don't know what they are talking about.

Just like Dakotah has grown and spread her wings, Paige is as well. Perhaps she is a bit more subtle about it, but I see her working hard for her own independence - pushing me away in the pool so she could swim the length of it freely; welcoming hugs and kisses for bedtime, but then letting me know that she's had enough; seeing her trying hard to be with the "big girls" this week - wanting to be between Dakotah and her friend Jess when they were on messenger, or facebooking - giggling at them, and trying to get them giggling back - acting silly to get their attention - so typical, so normal of a younger sister to do - and so very sweet to watch.

We are on vacation!

2008-08-06T20:16:00.002-04:00

We are just gone for a few days, and are only about 2 hours from home, but we did manager to get away for a bit.

Its been cold and rainy where we are, so our activities so far have been limited to indoor swimming and mall-shopping. Hopefully tomorrow will bring some better weather, and we will be able to do something really fun.

Dakotah has brought along her friend Jess and they have had fun shopping til they drop. I have determined that I'm too old for mall shopping - all the stores seem cutesy an trendy and way too expensive. I think I'm just at that point in y life where I don't ache for a pair of shoes simply because they are the "in" thing - I'm happy having comfy shoes and not thinking about it too much, lol.

Paige has had fun - she loves swimming and people watching at the mall. She is a bit out of sorts, as her routine is completely upsidedown and I'm not sure she understands why we traded our nice big house for a hotel room, lol. She likes the simple things like Mom does - and is quite happy just hanging out.

On Friday, my sister Kathy is meeting us here and picking Dakotah up; she is going to NH for a week to visit with our family down there.

For me, it is back to work next week!

I must admit - its kinda nice leaving our room and coming back to our beds made!! Now *I* get the luxury of that mysterious fairy that does it at my house, hehe...

Time to spiff up my blog!

2008-08-03T21:48:00.002-04:00

My poor blog has been horribly neglected this summer. Usually, when I don't blog often, it is because my mind is so busy, and I have so many thoughts to get down that I can't sort through them enough to post.

This time, not so much!

I think I've hit writer's block - everything seems mundane and boring...I start to write, and then click away.

In an effort to get out of that slump, I'm going to visit The Daily Meme. This site is full of great ideas. Broken down into days of the week, each day has tons of suggestions on it. I could get lost forever in these ideas!

So, hopefully, I'll be able to get creative, and put my own twist on some of the subjects that I find on this site! Please check it out, and feel inspired!

Thanks, Randy Pausch

2008-07-25T23:47:00.004-04:00

Randy Pausch
Achieving Your Childhood Dreams

Rest in peace, Randy...you did it with great dignity, a sense of humour, and with an amazing message to the world.

My prayers go out to your family. They will be o.k. - you taught them how to love with their whole hearts, and that will carry them for many years until you meet again.

You seemed like a great guy - I think I would have enjoyed knowing you.

If anyone hasn't seen his "last" lecture, its worth taking the time to see it...

"She's Always Going To Need You"

2008-07-19T16:07:00.003-04:00

I met a wonderful doctor this past week.

His name was Dr. Doyle, and he runs the clinic for children with autism at CHEO. He is a developmental specialist, and the last doctor on our list of doctors to see to determine if Paige has autism.

Dr. Doyle is an older gentleman, soft-spoken, genuine, and so very sweet. The wing of the hospital that we met at is called the Children's Treatment Center -where children with physical and developmental delays go to receive therapies, evaluations, fittings for seating, diagnosis, etc.

There is an on-site school at OCTC - for kids up to grade three. Although many people strongly disagree with "special" schools, this school is special for all the right reasons. It was designed for children who are quite severely delayed; the classrooms are small in number, but big in size to allow for wheelchairs and adaptive equipment. The teachers and aides that work with the children are trained to meet their needs within the classroom. Doctors are available at all times, and often the children with greater medical needs see their doctors right in their classroom.

Each room has one-way mirrors so parents can stop by at any time of the day to see what their kids are doing. This is my 3rd or 4th visit to OCTC, and each time I visit, there are always parents there. Although, its sometimes hard to tell who is who, because there is such a great sense of family between parents and educators that they are on a first name basis, sometimes chatting about the previous weekend's adventures and such.

So, needless to say, I felt at home the moment we wheeled our way into the waiting area.

I was greeted by Dr. Doyle, not a nurse who took us to a waiting room, but by the doctor himself, who led us to a friendly room with toys and puzzles, and only a discreet bit of "doctor" stuff around.

I was prepared for the typical developmental checklist to be read to me - to answer all of the 500+ questions that I have answered before, with the vast majority of them being answered with a 'no, she doesn't do that" or "no, not yet" or something of that nature.

Instead, I was led into a conversation about Paige herself. A conversation in which I was able to tell funny stories about my little girl; in which I could brag about all the things she can do, and talk about the areas where she isn't progressing quickly.

He was genuinely interested in her as a person, giving me scenarios and asking me how I thought she would react in those scenarios.

After an hour or more, he told me all the things I already knew - that she was developmentally delayed past the point of what was typical for a child with T21; that she displayed many characteristics of a child on the autism spectrum; that my answers led him to believe she was a child with autism; and that his observation of her over the time we chatted pointed to several key factors that would lead him to diagnose her with autism.

He asked me if anything he was saying surprised me, and I said, "no, of course not, I would have been more surprised if I came in here and you told me she was NOT autistic."

And then he said something in the most amazing way. In a way that made my heart swell with joy, that made me want to burst out smiling, that made me want to pick her up, swing her around in a circle with both of our heads tipped back, laughing the whole time.

He said, "she is always going to need you."

Without a second's pause, I answered, "That's good, because we are always going to need her."

~~~~~~~~~~~~

So, that's it? That's all a diagnosis of autism, or T21 for that matter, means?!?!?

That she's always going to need us? That's the worst of the worst? That's what we fear so much? Delivered the way he did, it seemed like such a wonderful gift.

Wow. Wow to all of those people who contemplate termination of their pregnancies. Wow to those of us who live in fear of what adulthood will bring for our kids. Wow to those of us who close our eyes in the dark of night, or in the privacy of a shower and wonder "what if" "what if" "what if." Wow to all those worries, sometimes so unfounded, and yet so profound that they take over our lives.

She's always going to need me.

She's always going to need me.

She's always going to need me.

Hardly a life's sentence.

Rather a life's blessing.

You Can Call Me Bill...

2008-07-07T23:36:00.002-04:00

So, today I felt like I had been thrust into a time machine, and totally flung backward nearly a year.

Normally, that would be a good thing - who wouldn't welcome the chance to re-live a year over again?

Admittedly, though, this news has come with a heavy sigh, a resignation, and a lot of self-talk to myself about digging my heels in, pulling myself up by my bootstraps, and jumping in again.

Paige saw her orthopedic surgeon today. Her hip is heeling well, although it is taking some time. She is walking with just a bit of assistance - she can walk holding my hand. She doesn't have a lot of stamina, and is definitely still very stiff. As expected, she is literally learning to walk all over again. The best way I could describe her ability to walk is "hobbling along" a few feet at a time.

One thing that is really amazing is that, for the first time ever, she is able to walk with her left foot flat on the floor. Since she began walking, her ankles and knees have turned in so badly that she was walking on just the inside of her feet, with her ankle bones nearly touching the floor. There is a marked improvement in her left foot.

However, her x-rays show that her right hip is in very bad shape - it was dislocated in the xray. So, we are now again on the "waiting list" for a surgery date - one that will happen some time in the next 6 months.

I knew this was coming, but I guess I put it out of my mind or something. I really expected to go and see him, and to have him say, 'come back in six months and we'll talk about the other hip. He didn't.

What he said is that he feels he has only a short window of time to fix her hip...as puberty hits, and she grows, her pelvis will change and it will become more difficult to perform this surgery.

So, here we go again....

I'm a rush of emotions - that night of the surgery is NOT one I ever, ever, ever want to re-live again. I never want to see my child in that kind of pain again. I don't want to hurt her little spirit, and by not being able to explain to her what is going to happen, I'm afraid that will happen. She'll be devastated to wake up in that stupid cast again. Once again, she will have to drag that thing around again for at least four months...not able to sit up or stand up or do anything really.

At the same time, I can't wait for it to finally, finally, finally be behind us. I can't wait to get to the point where we are not waiting on something dreadful to happen.

The times in her life when we haven't been waiting on the "next" thing have been small compared to the times when we have. Tonight I'm feeling melancholy and a bit sorry for myself and for her.

I know to be grateful - I know that "it could be worse" - much worse, and I know how incredibly blessed we are that we have people who can help her to get better.

I guess I had my hopes up for a nice uneventful year ahead, lol.

To top that all off, I am having some medical problems as well, and have been feeling really yucky lately. More than likely, I will need to address these problems and get them fixed - and somehow find a time to squeeze that in between now and surgery day.

So, the countdown begins again. Yahoo.

"She's a bit of a pre-snorer"

2008-07-03T18:55:00.002-04:00

Paige is cracking me up when she goes to bed at night now. She has always mimicked Wayne when he snores - she'll come into our room, and stand beside his side of the bed and copy the sounds he makes.

Lately, when I tuck her in, she is snoring herself to sleep, lol. She will lay there, eyes wide open, and rhythmically snore - only she kind of does it in reverse - instead of making noise when she inhales, she makes noise when she exhales.

She will do that until she drifts off to sleep, and then she stops snoring - because she is asleep by then, after all.

Too funny!

Wisdom for my children...

2008-07-01T22:46:00.002-04:00

1) Don't react immediately or make fast decisions. Time is a great provider of perspective; and allowing yourself a bit of pondering time can save you heartache, and apologies.

2) Name your fear. When you are feeling overwhelmed, and scared, try to really search your soul to see what is causing you fear. In my life, some of the most fearful things have brought me the greatest blessings.

3) Laugh every day. Especially laugh at yourself at least once a day. Don't ever take yourself so seriously that you can't find something funny in your every day world. That bit of toilet paper stuck to your shoe, or the piece of hair sticking up in the wrong place, or the tear in the seat of your pants will be nothing more than a story to tell in a few hours.

4) Love someone with your whole heart and soul, whether that be a lover, a friend, your sister or a parent. Find someone that takes your breath away just for their sheer existence - someone who makes your heart skip a beat with their beauty, inside and out. Please know, for me, I love the two of you in this way. Every single day, I am blown away that you are my children, that I am blessed to be your mother. I'm not worthy-and I know it. But, I sure do try.

5) Allow yourself a little indulgence once in a while, something you do for no other reason than it makes you feel like you are five again, swinging your feet without a care in the world. Sometimes this indulgence will be a simple as a scoop of chocolate ice cream, and sometimes it will be a tiny bit naughty, like skipping school to have an at-home pajama day, just because.

6) Believe. Believe in yourself. Believe in God. Believe in your convictions. Believe you can do it.

7) Make good choices. Bad choices will make your life unnecessarily complicated.

8) Be positive. Keep a healthy perspective. Be grateful. Look for the little things in life that will remind you of how wonderful this world is. This is perhaps the thing I wish I could hand you the most - a lesson I wish I could feed you, instead of one you have to learn. Some days, a cup of black coffee, a bite of a fresh strawberry, a stranger who holds a door open for me, my children's laughter, the dog resting his chin on my foot - all of these things remind me every day of how lucky I am to be alive.

9) Make a difference in this world. Please. Volunteer, pay it forward, pass it on - no career will ever make you feel more fulfilled than to know you are truly a good person deep down.

10) Watch out for one another. I am so happy that the two of you have such a special relationship. It fills my heart with the greatest of joy to see you two sitting on the floor, being all girlie - Dakotah brushing blush onto Paige's cheeks, helping her to pick out a nail polish color...brushing her hair. And the way Paige wraps her arms around Dakotah's neck, and squeezes with such abandon...pure, perfect love for one another. Don't ever lose that.

I love you two!

His Favorite Way To Be...

2008-06-25T23:37:00.002-04:00

Soaking wet!!! Fresh from a game of fetch from the water - even has bits of stick still in his teeth!

I'm Still Here!

2008-06-15T16:43:00.004-04:00

Its been so long since I've posted - its like going to church - you do really well going, and then you miss once, and its hard to get back on track again!

Life has been busy as usual for all of us. The girls have just 7 or 8 more days of school left, so we're finishing off end of the year things for them - final exams for Dakotah, IEP meetings for Paige...then field trips and special events at school.

We finished up our annual CHEO fundraiser by presenting a cheque on the Children's Telethon for over $15,000 again this year. We will never fully repay them for all that they have done for our family, but it is a start...

Our summer activities have started, and all of those appointments for Paige that I booked off until the summer will soon be upon me. As usual, Dakotah wants to travel to New Hampshire for a couple of weeks, and attend Journey to The Father.

Baseball season has started, and is taking up huge amounts of our time. Its tough to run 12 teams of kids from age 4-16, to keep schedules, make sure every team has everything they need, fill in for coaches, etc. Wayne is even busier than I am with it - I've sort of lost some of my inspiration, and really enjoy what I like to call the "public relations" part of it the most - you know, the part where I chat with the parents, cheer the kids on, and make sure everyone has water and orange slices.

Its the constant demand of paperwork and deadlines put forth by Little League itself that is really overwhelming for us.

Paige is doing well. We had her IEP this week, and I through some wrenches in for all of her 'team' to think about. I feel as if she can be challenged a bit more, and that, if we twist and turn our approach a bit, then we may find little niches that we haven't found yet for her to learn and develop better.

So, we'll see how that goes....

We'd love a summer pool in our backyard - it would be so therapeutic for Paige - she would be able to exercise those muscles of hers so much better. Someday!!!

All in all, life is pretty normal around here - and that's not a bad thing at all!!

Kate27, 30 & 37!!!

2008-05-20T22:32:00.004-04:00

I was so happy to see you post on my blog, but your name is not clickable! Email me at BetsyBiskt@hotmail.com.

The Tulip Project

2008-04-13T20:49:00.002-04:00

This year, one of the contributions that I will be making for "Livee's Loonies for CHEO" is a series of handmade cards that I have created with my sister, Kathy.

We have named this series "The Tulip Project" as all the cards in this series will have a tulip somewhere on them. On the back of each card is a note explaining why we have chosen tulips, and a little about the project.

This project is very near and dear to me, and its very good for my soul to look forward to it each year. I have been busy creating these cards and truly feel as if it is a labor of love to do so.

I am especially endeared to it this year, as we have had a very tough year medically with Paige, and she has been hospitalized 4 times over the winter at CHEO.

If you would like to order a set of cards, please email me at BetsyBiskt@hotmail.com, or call me anytime.

To view some samples of our work, please click the links below:

Set One
Set Two
Set Three

Thank you! :)

For Princess Livee

2008-04-12T11:17:00.004-04:00

As many of you know, last year, my family was blessed beyond measure, when our friends Leonard and Carol asked us to be a part of a very special fund-raiser called "Livee's Loonies for CHEO."

Len and Carol are very good friends of ours, and we love them and their seven children dearly. The fund-raiser exceeded our greatest expectations - raising nearly $20,000 in just a few short weeks; all donated by friends and family.

Those weeks were one of the most amazing times in my life. I felt purposeful, and like I finally, finally had found a way to say thank you to so many who had meant so much in our lives.

I created this video as a thank you to Livee's friends and family, who have loved and supported their family. Over 100 copies were distributed in Eastern Ontario, to schools, friends, family, doctors, etc.

I've finally figured out a way to make it accessible on my blog...Powerpoint is not the most compatible program in the world to work with.

So, excuse the poor quality, and the words "evaluation copy" at the bottom of the slides.

Enjoy one of my great blessings...

My Daughter is....

2008-04-10T18:53:00.001-04:00

"almost, sort of" WALKING

Is there really anything more than that to say?!?!? It is as amazing and glorious to watch her take her first steps after surgery as it was to watch them the very first time she learned to walk.
God blessed us with the miracle of perception - we waited six long years for her to walk the first time; surely we can wait a few months to see if it returns once again.

She is determined, and has surprised all of us more than once, as she first worked to sit up on her own, and then to lay back down, and within a couple of days, to pull herself all over the room, and then soon, she was on her hands and knees - and then trying topull to stand at the table or the couch or near the computer.

She is working hard to shift her weight from leg to leg to start taking those first steps...

She has a lot of muscle tone to recover, but she is getting there....

She is...simply amazing.

I say that as if we didn't already know that. yeah right.

Our Daily Dose of Dave

2008-03-27T16:48:00.002-04:00

Hop on over to Chewing The Fat - and read Dave's "10 Bits of Advice" for parents of kids with disabilities.

Dave blogs every day, and always has something interesting or thought provoking to say!

Beautiful Birthday

2008-03-24T10:08:00.024-04:00

If you click on each picture, you will see them in a larger size. Isn't she precious :)

Happy Easter and Happy Birthday!

2008-03-23T23:25:00.002-04:00

What a wonderful day we had today! Today was Easter, and also Paige's 11th birthday. She was happier and more animated than I have seen her in the last 6 months. She smiled and giggled all day long, and was very happy to have a houseful of company for most of the day. She enjoyed opening all of her gifts, and it was so nice to actually sit her at the table for dinner.

We got some really beautiful pictures of her - I'll post them tomorrow.

Happy Birthday, sweet girl - I love you so!!

Happy World Down Syndrome Day!

2008-03-22T00:03:00.002-04:00

Today is World Down Syndrome Day. I am so happy to be a part of such an amazing celebration of diversity and friendship.

This year's theme is "Aim High Enough" - a quote by Dr. John Langdon Down - the scientist who discovered that Down syndrome is a triplication of the 21st chromosome.

If you know someone with Trisomy 21, please let them know you are thinking about them today!

Cast Free!

2008-03-21T23:53:00.002-04:00

Paige had her cast removed last Thursday after nearly 6 months in it. It was so neat seeing her finally free of it. She has lost a lot of muscle tone and a good bit of weight - her little waist is so tiny - at nearly 11, I would have no trouble fitting a size 4 pants around her.

The first couple of days were rough - she was uncomfortable, and did not want anyone trying to get her to move - she wanted to do it by herself. She was moving very, very slowly and it took her 3 or 4 days before she could push herself to a sitting position.

The surgeon is project 6 to 12 months before fully mobility returns. But we are seeing changes every day. She is getting stronger and tolerating a little bit more every single day. With some support, she can take 3 or 4 tiny steps. It still seems to be very sore, as she is favoring her left side a great deal.

I'm so happy to have this behind us, and pray that it will "stick", as only time will really tell us.

I called my sister on the way home, and told her, "I am so very lucky - most moms only get to see their child's first steps once - I get to see them twice!"

We All Love Babies!!

2008-02-23T08:46:00.003-05:00

And this little guy is completely, utterly, totally adorable!!!

Hop on over to visit Chris at Mothering by the Seat of My Pants. Chris has three kids - and her youngest, John, was born with Trisomy 21. Chris's blog is heartfelt and real - a wonderful perspective of this journey many of us are taking upon learning our children have Down syndrome.

When I meet new parents, I always encourage them to write, write, write - because it is an amazing thing to look back at your initial thoughts and feelings even a year or two into the journey, and to see how much you have grown and learned and evolved as you have come to fall hopelessly in love with your little one.

Chris is getting her feet planted on the path, and you can tell by her words that she is introspective and thoughtful, and that she will cherish this experience.

Thanks to one of my bestest buddies, LauraQ, for pointing me her way!!!

Meme

2008-02-20T08:12:00.001-05:00

This is my first ever created meme - and I am tagging all my wonderful friends in the T21 community. Read my story below about Jake, and then blog your first experience with someone with Down syndrome.

Come back and leave a comment, and I'll add a link for you to this post.

Thanks for playing :)

Betsy

Jake

2008-02-19T09:25:00.002-05:00

This post is inspired by Dave Hingsburger who writes about his first time meeting a person with Down syndrome.

I first met Jake when I was about 14. His mom hired me to babysit him one day. I knew Jake had Down syndrome, but she never mentioned it. I guess in 1978 it wasn't as easy to integrate it into every day conversation as it is for me to do now.

Its funny how I can remember almost every detail of that day, more than 25 years ago. Jake was a happy, easy going little boy whose glasses fell to the tip of his nose many times. He would take his chubby little hand and push them back up again, never frustrated at how many times he had to do it.

We decided to play with his fuzzy pumper Play-doh toy, putting the little people on the barber's chair, and squishing play-doh through the holes of their heads so that we could give them a haircut. We made crazy hair styles, and had great fun playing - play-doh is also one of my favorite things to do with my children - nothing gets imagination and conversation going like making "cookies" or people or anything you can dream of.

Looking back, I'm sure we played with play-doh just because we wanted to, not because anyone had assigned the task to help with fine motors skills for Jake. And how nice that it was just a kid being a kid.

I had so little experience with anyone who was different, and had no idea what to expect from Jake. I didn't know what he understood and what he didn't, what he liked and what he didn't. All that I had learned from my own mother was so stereotypical - she used the antiquated words to describe people with developmental delays, and assumed they were all the same.

I remember telling my mother when I got home that day that Jake's hands were really dry and rough, and she told me that "their hands are always like that." For years, whenever I met anyone with Down syndrome, I was very conscious of their hands...always looking for those dry rough hands.

Today, one of the things I love the very most about Paige is her hands - soft and supple and very sweet. How very wrong my mother was.

After his lunch, we went out on their front porch to play. Jake decided to go into the house and when he did, he locked the door behind him. I tried to talk him into unlocking the door for nearly an hour. I teased and pleaded, and then....I knew....

I learned a lot about Jake in that hour it took me to convince him to open the door. I learned that he was sorely underestimated. He wasn't unlocking it because he didn't know how. Oh no...

That big belly giggle as he looked out the window beside the door told me he knew exactly what he was doing. He was in and I was out, and he was going to decide when that changed. He was very clever, and thought it was hilarious that he held the Power of the Door.

He would wander to the kitchen table, where he colored and sat for a bit, and then come back to the door to make sure I was still there. After a while, he tired of being alone and let me back in the house - opening the door lickety split when he finally wanted to.

Many people would read this, and say, "oh, people with Down syndrome can be sooo stubborn sometimes."

I don't know - in a world where everyone is always telling you what to do and when to do it, "stubborn" is probably a very good thing...

Strangely, I don't remember if Jake could speak or not. He was about 9 years old at the time, I think. I don't remember having any difficulty communicating with him, and knowing what he wanted as well.

I don't think Jake ever attended school. If he did, it was most certainly a "state school" for children who were classified as mentally retarded. I'm sure he never received any early intervention services like Occupational, Speech or Physio Therapy.

He lived across the street from the High School's soccer and baseball fields, and often I would see Jake riding his big wheel around and around in the parking lot of the fields when there were games going on.

Everyone knew Jake, and everyone watched out for him.

Last I knew, Jake worked as a janitor at the local high school - a school that would have refused him entry when he was a teenager - a place where he was an outsider at best. He's had that job for many years, and everyone at the school knows him. I hear he loves to get the newspaper every day and look at it from front to back. I'm not sure anyone ever taught him to read; I'm not sure it ever occurred to anyone that he might be able to learn.

I don't know if Jake's family still lives in the big yellow house with the front porch anymore. But if they do, I'd sure love to see Jake again - to sit on the front porch with him, and tell him thanks.

I understand, Jake - sometimes I want to lock the front door and watch the world from the window too. But sometimes, ya gotta take the Big Wheel out for a spin too...

Patience

2008-02-05T11:44:00.002-05:00

"My heart...
My soul...
My life...
My darling Paige...
Together, we have no limits"

This is the note that I placed on Paige's incubator when she was born so critically ill. I wanted her to know that I have no limits when it comes to mothering my children, that I will always be there for them, and that together, we can get through anything.

I remember them telling me as they intubated her over and over again, that she was "tired" and I would become so frustrated - how could she be tired, she was a newborn...how could she be tired of living and breathing already?

I spent a lot of hours with my face inside the little round portal that allowed me a glimpse of my newborn baby - I would talk to her and sing to her, and reach for her hand, one of the only parts of her body that was not covered in medical equipment.

Over and over, I promised her patience - that I could wait for her to be o.k. - that if she needed more time to heal and to grow, I was right there beside her, cheering her on.

And, as the story goes, grow she did - into a beautiful young lady of nearly 11 now.

One of the difficult things I struggle with is the knowledge that I am the mom of a child that would be considered "medically fragile."

I don't much like that role; I'd much rather just be Dakotah and Paige's mom...

Because admitting that my child is medically fragile, and by all accounts, really is, puts me into some sort of weird superhero category that I don't really deserve or want

She was hospitalized nearly a hundred times in her first years of life, with 20 surgeries under her belt before her 5th birthday.

Somehow, that makes me a person to be admired and respected - someone who has bravely gone through a lot, sometimes too much...

But, I'm not that at all. Not at all. I am no more special or brave or any of those other things than any other mother.

I also don't ever want to be held up as the example of how "tough" it can be to have a child with Down syndrome - because it certainly has been one of the greatest blessings of my life, and I am so, so grateful to God for haven given me the opportunity.

These last months, where Paige has been in a full body cast, have been hard on me sometimes. Admittedly, I've had quite a few moments when I have had to remind myself to be patient, that this isn't a race through life, but rather a journey with many paths, each one offering up beauty and lessons if we open ourselves to them.

Other than her first year of birth, when I thankfully had no idea what lay ahead of us as far as medical issues, this has been the longest lasting medical problem we have dealt with. Paige has been in a cast for nearly 5 months.

During that time, I've had to adjust and re-adjust, and then re-adjust again - her schedule, her school, my job, our lives, everything has been affected by this.

And...the reality is, we won't even know if this has been successful until the cast is off, until she tries to walk again. We may very well be facing this all over again in her other hip; we may have to face the reality that she will not ever fully recover from these problems.

So, my heart has been heavy at times, and I have felt very defeated sometimes.

I have a newfound compassion for people such as Tammy, Parker's Mom, and Pam, Rhett's Mom, whose children have been chronically ill, and who's lives have been tumbled upsidedown because of it.

My friend, Melissa, who's daughter has a fatal condition, loves unconditionally, and tirelessly, with the knowledge that Bella is not going to get better.

This morning, I read the news that a very nice person, who's daughter with T21 died at 18 months, has now learned that her five-year-old son has a cancerous brain tumor.

I am not worthy of these brave people who's lives I've been so lucky to learn about. I cannot even comprehend walking in their footsteps for a day.

But, if I were able to, I'd follow along behind and lighten the load as best I could.

And as I walked behind them, I'd remind myself of some very wise words from my friend, Nicole...to "get over myself"

The world is such a beautiful place - and I am grateful to be a part of such a glorious community of friends.

Funny new trick

2008-01-29T14:16:00.000-05:00

Paige has been having a lot of trouble sleeping lately. My theory is that it is because she is spending so much time immobile, that her body doesn't really know to relax when its nighttime - that there really isn't much transition for her, somewhat similar to the sleeping problems people who are blind sometimes have.

Because of her casting, she is sleeping in a hospital bed on our main floor, and I am sleeping next to her on the couch. She has to be turned every couple of hours to prevent bed sores, and needs help to make any moves to make herself more comfortable.

The other night, she was just not going to sleep. She was in a good mood, singing away, tapping on her bed rails, kicking the one foot she has mobility in - anything she could do to entertain herself.

It was getting late, and I was getting tired - somewhere around midnight. So, I would say to her, "Paige it's time for sleep." And then she would fake snore for three or four breaths, and then laugh hysterically!

It was so funny to see her think of that joke all on her own, and to try to get away with something. Every time I moved, or rolled over, or cleared my voice, she would start the snore again, and then giggle afterward.

Tooooo cute!

Paige had her check-up today

2008-01-17T19:04:00.000-05:00

She is doing really well. I was sort of hoping he would trim the cast down a bit, but no such luck.

I got to see the x-rays of her hips before and after - its really fascinating to see how they look - how the anatomy of hip dysplasia looks - its very obvious that it has literally worn down her hip sockets on both sides.

And the after picture was kind of neat too - she has bone grafts and a big metal plate with three screws in it. Its funny that the screws look like regular ol' carpentry screws, lol.

Her other hip is just as bad, if not worse, so that will eventually be done as well. He says this one looks really good though, and if it works, at least he'll know what to do on the other one.

So, no weight bearing for another 5 weeks - no rolling, etc. Another 5 weeks on her back, poor kid...

Things are falling into place though, and we will be able to get back into a routine next week where she will be able to go to school for a bit in the morning, and at least get some socialization in. I have a personal support worker that will be coming in in the afternoons to work with her. She is very sweet, and does lots with Paige while she is here.

Paige has been just adorable the last few days - so affectionate, so full of laughs and smiles, and so, so sweet. Every time I get near her, her face lights up - what Mom doesn't love that?

If it were summer, and we lived near a beach, I'd carry her in that big bulky cast out to a blanket in the sand, and just waste an afternoon or two talking about nothing, listening to the waves, and watching the shapes in the clouds...

She's actually in a pretty good position for snow angels too, but that entails a little more work, and cold, and wet, then we can do right now, lol.

For Dave, and for Brent...

2008-01-13T11:16:00.000-05:00

Dave over at Chewing The Fat, has been writing about Brent Martin, a young man with a disability who was repeatedly beaten and tortured for the sport of it by three young men who bet each other they couldn't knock him out on the first punch.

When the first punch didn't work, they went on to beat him and hit him 18 times, until he was left dying in a pool of his own blood. Reports say that during the beating, he didn't fight back, that he told his attackers over and over again that they were his friends, that he would buy them a beer.

One of his attackers is quoted as saying, "I'm not going down for a muppet."

Dave wants the world to know Brent's name. He wants us to tell everyone we know that its not o.k.

Its not o.k. that Brent suffered at the hands of these men simply because he was vulnerable and had a disability.

Its not o.k. that we are not in an uproar about this kind of treatment.

Its not o.k. that their sentences to jail could be affected because Brent could somehow be deemed lesser of a person, less worthy than a "normal" person.

Brent mattered. He mattered to those who loved him, including his twin sister. He mattered to those he spoke to on a daily basis and whom he generously gave to.

He mattered.

He mattered to Dave.

He mattered to me.

How dare these kids think that they are better than him, that they could do something so cruel and heartless, and then laugh about it afterward?

Those of us with ties to the world of people with disabilities understand that this goes much further than three kids beating up another kid. It goes so deeply in our own souls that it is hard for us to read the stories about Brent. We understand that this is about a prejudice that few speak of or even know exist, something so deeply embedded in people that they do not even realize their own reactions to people with disabilities, both born and unborn.

Thanks to Dave, Brent will be honoured all over the world this week.

As he should be.

We are home!

2008-01-09T09:44:00.000-05:00

I'll update more in a bit - Paige is grumpy and needing me - still not eating and not drinking much. She's been vomitting so we're hoping to get on top of that too.

I've got lots of organizing to do today with nurses, etc.

But, we are HOME!!!

Post-Op

2008-01-06T12:36:00.000-05:00

Paige had her surgery on Friday - it was long, and he had to do both her hip and her femur. She is in a spica from her armpits to her ankle on one side, and her knee on the other.

We had trouble getting pain under control after surgery, and they gave her a lot of pain meds. She reacted badly to them, and they had a hard time stabilizing her afterward. Her sats plummeted and her heart was racing.

So, it took a few hours to get her out of recovery.

Her first night was rough - she was awake for most of the night, and in a lot of discomfort. The pain meds made her incredibly itchy, and she didn't respond to benadryl. She was also probably hallucinating from them, which made it difficult to comfort her.

Yesterday, she was very, very swollen - her feet are like little bread loaves, and her face was nearly unrecognizable. She was a bit more comfortable until mid-afternoon when her iv slipped, and fluid filled her arm - it got rock hard and hot to the touch, and very very painful.

It took 4 of us nearly 2 hours to get another i.v. in her - there is simply no place to put it, and everything collapses when they tried.

After that, she got quite a bit of pain meds, and slept from about 4 yesterday until this morning - she was just kind of in and out of it during that time.

She isn't putting out much urine at all, so they are still pumping her full of liquids. She is still pretty swollen and pale from blood loss.

We just had an x-ray to check for pneumonia, as she is quite foamy around the mouth and breathing is pretty labored.

So...we are here for a while longer.

I can't seem to get anything into her to eat or drink...two spoons of oatmeal and a couple of sips of juice that I forced into her this morning caused wretching and gagging for 20 minutes.

I think all of this is pretty much expected - this is not an easy surgery. Still, its hard to watch my baby just lie there, pale and swollen...

We will hear back from x-ray shortly - hopefully we won't have another complication to deal with.

I'll keep updating my blog for those who are reading it.

Sisters

2008-01-03T15:23:00.001-05:00

Happy New Year!

2008-01-01T12:19:00.000-05:00

2008!! Wow! How fast the years fly by! This year, I will turn 44, will celebrate my 17th wedding anniversary, will wish my kids a Happy 11th and 15th birthday; I am 3 times Dakotah's age, nearly 4 times Paige's age. I will have been a licensed driver for 28 years, will have been able to buy alcohol legally for 25 years, will have graduated from high school 26 years ago...

Those numbers really blow me away - really, life does whiz right by us, doesn't it?

Its the day of making New Year's resolutions, and I'm torn between committing, or trying to commit to a million of them, or just forget the whole dang thing.

Some of the things I'd like to do for 2008 is to take more pictures of my children, to laugh more, to do things I like to do more, to have more down time, to be more creative.

So typical of me though, is that every resolution contains the word "more" when in fact the best way for me to make real changes in my life is to embrace the word "less" a bit better.

Its now 12:30 - 12.5 hours since we rang the New Year in. I can hear Dakotah upstairs - she is just now getting up for the day. Wayne got up about 2 hours ago, but hasn't showered yet. Its snowing like crazy here, and he is settling in for (another) day of football.

I've been up since 6:30, have done laundry, vacumming, fed and dressed Paige, showered, tried to log on to my work computer about 200 times so I can get some work done there, spoken to three people on the phone, put the dog out twice, thought about dinner for tonight...

I totally suck at New Year's resolutions :)

Glory To God in The Highest - and Peace To His People On Earth!!

2007-12-25T00:55:00.001-05:00

Merry Christmas Everyone!

We have a surgery date!

2007-12-23T10:52:00.000-05:00

So, Miss Paige will be holding out for the 2008 model of hip - her surgery is scheduled for January 4th.

I'm looking forward to the day, so that we can finally get it behind us - these last three months in a body cast were a surprise for us - and, had we known this would have happened, surgery would have taken place sooner for her, so that all of this could have been healing time.

Her surgery will be a long one - between 7 & 9 hours if all goes well. We are praying that she won't have any of the complications that we have been warned about - severe blood loss, infection, etc. And, if she does have them, we pray that the doctors who care for her will be prepared to deal with them.

Although its been quite a journey so far, I am also very grateful - it could have been worse. Through it all, Paige has remained her sweet, happy self for the most part. I have loved the extra time I have spent with her, and have felt so close to her as I laid down beside her on the floor and just "chatted" so many times.

Just as it is a celebration of humility in my church for a bishop to wash the feet of his parishioners, it is that same celebration of humility and joy that makes it so easy to care for Paige - to give her sponge baths, and to eat our dinner on the floor beside her so we can all eat together.

It was not a burden to bundle her up on that cold, cold night and put her in her wheelchair, and plow through the snow to watch the parade - it was our great privilege, and we did it with the knowledge that we are very, very blessed to be a family who loves one another, and who clapped and waved and laughed at Santa as he waved to the crowd.

Paige has been so healthy this fall - not a single runny nose, not a cold, etc. Her skin has held up well with this cast - there have not been any tender spots that we have had to worry about.

I have rather enjoyed sleeping downstairs with her - when this is all over, I will miss waking up to cover her up, or just to watch her sleep for a while, to listen to her breathing, and to lift my eyes to sky and thank God, over and over again, for the gift of her.

And, I daresay my husband has made himself quite comfortable having a room of his own for the first time in nearly 20 years!! He has set it up like quite the bachelor pad - with a stereo for his old record collection, and sprawled across the whole bed like he owns it :)

Even though he says he misses me, no one has jabbed him in the ribs and told him to stop snoring or to get on his own side of the bed, or to turn down the radio or give up some blankets for quite some time!

The saddest casualty for me has been that we have had to cut her hair - it was getting so matted and tangled when she would spend long periods of time in her wheelchair or on her back - and it was just impossible to manage - we have to wash it hanging over the bed, and she was very upset at me as I tried to brush it out every day.

So, about 12 inches of it has come off - it is no longer down past her bum, but about halfway down her back. My heart still tugs when I look at it, although she seems rather unaffected by the whole experience, except hair care is much easier now.

I am heading into our Christmas celebration with a happy heart - so grateful for so many things in my life...my wonderful community of T21 sisters, my children, my husband, my sister, my dear friends...

Annette

2007-12-16T11:42:00.000-05:00

Annette passed away this morning at 1 a.m., surrounded by her family. She leaves to mourn her sister, Lisa, her husband, Tom, and her two boys, Kurtis, 9, and Ryan, 7 and so many friends. Annette was part of our Trisomy 21 family - Ryan has Down syndrome.

She was a wonderful friend, wife, and mother. She will be dearly missed by so many.

Please pray for Annette

2007-12-15T00:19:00.001-05:00

Please pray for my beautiful friend, Annette. Pray that she is peaceful and pain free. Pray for her two young sons, Kurtis and Ryan, and her husband, Tom, as they struggle to say good-bye to her. Pray for strength for her family, and the knowledge that they are surrounded by love.

Paige's Hand

2007-12-05T20:46:00.000-05:00

This is one of my very favorite pictures of Paige - it is the actual size of her hand just after her first birthday. She laid her hand on the scanner, and we took the picture that way...

I have always adored Paige's hands. My first knowledge of them was when she was in utero - when the technicians studied them so closely to see if they were clenched - a sign of Trisomy 18 - the diagnosis she was suspected of having before we got amnio results.

And the day she was born - her hands became the focus of the team of doctors awaiting her yet again, as we discovered she was born with an extra thumb on her right hand.

Just a few days later, I would cherish those hands of her, as there were so many tubes and wires everywhere on her tiny body that her hands were the only thing that I could really see or reach for. How I loved staring at those hands...

Through her first years, we spent quite a few nights in the hospital, where I would sleep next to her, and her tiny hand would reach for mine in the dark. From a very young age, I would only have to whisper to her, "do you want to hold hands" and that sweet hand would come my way...

And, indeed it is her hands that have taught me some really great lessons. Not only because of the things they have done, but the things they have struggled to do as well. She uses her hands to speak, and entertains herself often by watching her hands dance in the sunlight.

Its those lovely hands of hers that have kept me grounded on this journey. They remind me that God did not bless me with her in order for me to prove to the world that I could raise the smartest, most accomplished, most impressive child with T21 ever.

No, His intention was completely different.

He wanted me to know unconditional love for my child. To feel my heart fill with joy every day at the sheer sight of her. He wanted me to be a messenger of this joy; to share that joy with others.

He does not want my life to be measured by success in the usual way we measure success - by a career, or by finances, or accomplishments. Nor does He want me to judge the worthiness of her life in that way.

Instead, He sent her to me so that I could learn the real values of life - those of compassion, selflessness, and yes, sometimes humor.

Those lessons help me to be a better mother to both of my children; as I fight my own perfectionism and realize that they both are gifted in their own way, that they both will soar and they both will coast - that its a natural progression of our lives.

Paige uses those hands to express her love - when you sit with her, or lay beside her, she will ever so gently rub your face, touch your hair, and explore you in a way that only an innocent child can. She particularly loves to see if you have earrings on, and loves the feel of them as they rub against her hand.

Right now, she is using her hands to harass the dog, who is trying to feign sleep under the coffee table, in the furthest corner his 90-lb body will allow him to be. She commando crawls after him, and squeals in this high pitched way that only he can hear, lol

In the next couple of weeks, I will once again be whispering, "do you want to hold Mommy's hand" to her, as she wakes up from anesthesia, somewhat confused and looking for comfort.

And, with any luck at all, when I am old and my days are coming to an end, it will be her who whispers in my ear, "do you want to hold my hand?"

And then...then...I will remember once again that the celebration was the journey, not the destination. That however ordinary anyone else in the world might have judged us to be, we have been quite extraordinary, this team of her and I.

Shameless Plug!

2007-11-21T09:20:00.000-05:00

Come and visit us! My sister will be coming up this weekend and we will be going to a craft fair with everything you see listed here, and lots more! Check it out...