Monday, December 08, 2008

Almost there!

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.

Monday, December 01, 2008

'Tis The Season!!

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!

Friday, November 14, 2008

My funny girl

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?"
~~~~~~~~~~~~~~~~~~

Friday, November 07, 2008

Paige always wows her audience!

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 -

Tuesday, November 04, 2008

Most People Can't Tell

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."

Sunday, November 02, 2008

We are home!

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.

Friday, October 24, 2008

My buddy & me...

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!

Tuesday, October 21, 2008

If Only...

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.

Friday, October 17, 2008

Take a Deep Breath In...

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.

Wednesday, October 15, 2008

A Ray of Light...

  “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.

Monday, October 06, 2008

Think of Me First As A Person

" 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...

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.

Thursday, October 02, 2008

Blogging for Down Syndrome!

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.

Tuesday, September 09, 2008

I Never Understood This

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...

Friday, September 05, 2008

Its Getting Interesting!

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.

Tuesday, August 26, 2008

Its My Favorite Time of Year!

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!

Sunday, August 10, 2008

We're back from our mini va-kay!

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.

Wednesday, August 06, 2008

We are on vacation!

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...

Sunday, August 03, 2008

Time to spiff up my blog!

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!

Friday, July 25, 2008

Thanks, Randy Pausch


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...





Saturday, July 19, 2008

"She's Always Going To Need You"

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.

Monday, July 07, 2008

You Can Call Me Bill...

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.

Thursday, July 03, 2008

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

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!

Tuesday, July 01, 2008

Wisdom for my children...

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!

Wednesday, June 25, 2008

His Favorite Way To Be...

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



Sunday, June 15, 2008

I'm Still Here!

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!!

Tuesday, May 20, 2008

Kate27, 30 & 37!!!








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

Sunday, April 13, 2008

The Tulip Project

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! :)

Saturday, April 12, 2008

For Princess Livee

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...



Thursday, April 10, 2008

My Daughter is....

"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.

Thursday, March 27, 2008

Our Daily Dose of Dave

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!

Monday, March 24, 2008

Beautiful Birthday

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




























Sunday, March 23, 2008

Happy Easter and Happy Birthday!

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!!

Saturday, March 22, 2008

Happy World Down Syndrome Day!



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!

Friday, March 21, 2008

Cast Free!

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!"

Saturday, February 23, 2008

We All Love Babies!!

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!!!

Wednesday, February 20, 2008

Meme

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

Tuesday, February 19, 2008

Jake

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...

Tuesday, February 05, 2008

Patience

"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.



Tuesday, January 29, 2008

Funny new trick

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!

Thursday, January 17, 2008

Paige had her check-up today

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.

Sunday, January 13, 2008

For Dave, and for Brent...

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.

Wednesday, January 09, 2008

We are home!

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!!!

Sunday, January 06, 2008

Post-Op

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.