Fall 2012

Fall 2012
[learning to live a perfectly imperfect life]

Comfort Capes Story Postponed


Don't worry... you didn't miss it.  I had to fast-forward through the Early Show twice yesterday to be sure I didn't miss it.  Turns out they flew Amy and her family out to do the story about the Capes live yesterday, only to run out of time!  So, they taped the segment, and it will run sometime later this week.  Thank goodness for DVR... I'll be setting it to tape the show all week! 

Nerdy Lists & Finding Comfort


We are alive and well.  My absence from the Blog World definitely hasn't been from lack of blog ideas -- in fact, I have a little notebook beside my bed that's full of things to blog about, and the list keeps getting longer.  (Is that nerdy that I have a "Things To Blog About" list?  If it is, then call me a nerd, because I have a list.  And if you know me at all, you are not even slightly surprised.)  


We've been spending time with family.  My sister, her husband and 2 girls came from Kansas to visit -- we celebrated Rylee's 6th birthday and my neice's 1st birthday. My mom, dad and aunt came for a few days as well. Lots of pics from that fun visit to come soon!


We've been hanging Christmas lights. And yes, I know many people are very bothered by others who turn on lights before Thanksgiving -- don't worry.  Ours aren't turned on yet.  Not so much because we think we need to wait until after Thanksgiving, but because our timer randomly turns the lights off whenever it feels like it... often just before dark when you would actually be able to see the lights.


We've been vacuuming.  Remember in this post when I talked about our worthless vacuum? After much consideration about waiting until Christmas to get a new vacuum, I realized that neither Jeremy nor I wanted to waste one of our Christmas gift wishes on a vacuum.  (And even if I did, I would not admit it, because that would be lame and nerdy.  And I've already admitted to 'nerdy' with my list about blog ideas.)  Santa has a difficult enough time getting his belly down the chimney, much less his belly and a vacuum.  So, we bought a new vacuum for ourselves and now are pretty much obsessed with the household task.  It's a Dyson.  And it rocks.  


We've been teaching about manners.  

Carter: "Why-wee... get book peas?"  (Translations: "Why-wee" = Rylee and "peas" = please)

Rylee: (Rylee gets book Carter is requesting and gives it to him.)

Carter: "Yank you." (Translation: "Yank" = Thank)

Rylee: silence

Carter: "Why-wee... say welcome."

(In all fairness, Carter gave the girl less than 2 seconds to reply with "You're welcome.")

Rylee: "Welcome."

Carter: "Yank you...... hey Mom!  Why-wee said 'Welcome'!"


*****

Something that's been on my nerdy  "Blog" list for quite some time is "Comfort Capes."  And my reason for needing to blog about this now?  Well, you will just have to read on!

This summer we were asked to be a part of a special project.  "Comfort Capes" were created by a Mom -- a Mom with an imaginative little girl who became sick and needed to spend a few days in the hospital.  And the way a simple super-hero cape worn by one little girl at the hospital during treatment has turned into many sick children, finding comfort in their "Comfort Capes" is amazing. The story is best told by Amy, the creator of "Comfort Capes" here.

Rylee and Carter were asked to be a part of a "Comfort Cape" photo shoot at Sanford Children's Hospital.  Here are a few of the fun photos, courtesy of Sanford.  (Rylee is in a teal shirt with a teal/yellow cape, and Carter is in a red shirt with a navy cape.)

(And yes, that is our amazingly gorgeous new castle-like Children's Hospital.)  











Some of these photos can be seen on the "Wonder Capes" website homepage, or here on this page.

After chasing the kids around during the photo shoot in the summer heat, (you know, to keep them in the camera frame and not running off into the parking lot)  I was asked to say a few words about the "Comfort Capes."  Like I've said before, I'm not very good on camera.  One way to find out what your "nervous tendencies" are is to watch yourself on camera after you've had little time to prepare what you're going to say, and sweat running down your forehead from running around outside.  (So, please ignore the annoying frequent blinking of my eyes and sweaty bangs.)  (Video link in a second... one more aspect of this story to explain!)

Our involvement in Comfort Capes happened shortly before Rylee's tonsillectomy.  So, when they found out that she was going to be having surgery and staying at the hospital, they asked if they could tape a bit of Rylee before her surgery, wearing her "Comfort Cape."  You can see some of the pictures and video footage here.  (Click on the "Wonder Capes and Comfort Capes Story" video.)

Lastly, here is photo of Rylee I took during her hospital stay.  

It's been very exciting to be a small part of this project, and even more so, touching to read the stories from the families whose children have gained comfort during their hospital stays from their capes.

So, why did writing about this finally get to the "top spot" on my "Things To Blog About" list? Well, I'm so glad you asked.

This Monday morning, November 23, CBS's The Early Show, will be doing a story about the "Comfort Capes."  Amy, the creator, emailed me to say that some of the footage and/or photos Rylee & Carter were involved in may wind up in the news segment!  I am excited to see the story!  If you happen to miss it, I will see if I can post it after it has aired. 




*****

If it weren't getting late, I'd tell you about Carter's newest big-boy development, or Rylee's 1st Kindergarten report card, or.... Oh geesh!  Where's my nerdy  "Things To Blog About" list?

Life with An Extra Chromosome (Welcome to Holland)


Welcome to Holland
By Emily Perl Kingsley

"I am often asked to describe the experience of raising a child with a disability -- to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip -- to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean, Holland? I signed up for Italy! I'm supposed to be in Italy. All my life, I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for awhile and you catch your breath, you look around, and you begin to notice that Holland has windmills, tulips and even Rembrandts.

But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn't go to Italy, you may never be free to enjoy the very special, very lovely things about Holland."

******

We found out Rylee had Down syndrome when I was 20 weeks pregnant. I am often asked if I could do things over again, would I want to know of her diagnosis before she was born. My answer is, most definitely, yes. And this is why.

We knew we were going to Holland shortly into our vacation-planning. (We'd only had 20 weeks to plan a trip to Italy... not 40 weeks.) So, we hadn't bought too many guidebooks for Italy, and our Italian was still very shaky.

"Oh... we're not going to Italy. Hmmm. Well, okay." Though we may have been a bit surprised, our reaction was far from one of devastation. We didn't personally know anyone who had been to Holland, but we knew that we could find the beautiful things about Holland.

We had time, before our vacation, to exchange our guidebooks about Italy for ones about Holland. And really, some of the guidebooks worked, no matter where you were visiting. (There are some ways in which a vacation is a vacation... no matter where you're going.)

We had time to let our family and friends know that plans had changed... instead of receiving postcards from Italy, they would be getting postcards from Holland -- still absolutely gorgeous postcards... just different.

When we got on the plane, we knew we were going to Holland. Instead of being upset, disappointed and shocked that we were not landing in Italy, we could look forward to all the things we'd get to do in Holland. No sadness. Just excitement.

Yes, we had friends that had gone to Italy. And they talked about how amazing it was. But, we also began meeting friends who had gone to Holland, and wouldn't have had it any other way. Friends who visited Italy had stories about the gondolas, and friends who visited Holland had stories about windmills. The stories were all wonderful... just different.

We don't have pain in the loss of a trip we didn't get to take. Later, after visiting Holland, we did in fact get to visit Italy. And it was fabulous. But do I wish we'd gone to Italy first?

Not at all.

******

Six years ago today, we boarded the plane to Holland.

And this is the amazing little girl who took us there.



Happy 6th Birthday, Rylee Jayne

(Almost) Wordless Wednesday - Halloween Edition


Shrek and Donkey had a great Halloween! Donkey, however, was a bit more willing to take photos than Shrek, which is why he has more pictures. The kids ate a few pieces of candy and Jeremy and I ate the rest. It was a fun night!

Notice big sister Jordyn dressed up like.... a teenager. Holes in the jeans and all. (Oh, and Jordyn is a great big sister and everything, but don't think she came trick-or-treating with us. We stopped to see her so she could see the kids' costumes. We are cool, but not that cool.)