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!

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.

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.

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.

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.

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.