Tribute to Cardiomyopathy

The Children's Cardiomyopathy Foundation has been a life saver for us - more like a life line. It is the only one of it's kind and can be credited for any information I have about Eden's heart disease. Their list serve of families has become an extension to my family. They are the only other people that know where we've been and truly understand our struggles. We share successes and set backs, test results and doctors, research and advise. I am so grateful that such a resource exists and owe so much of my knowledge and strength to these families.

This slide show was just finished today, but the development and collection of photos began before we became members. Therefore, you won't see Eden in any of the pictures. It was so nice for me to put a face with the names I have read so much about. I just want to reach through the screen and kiss each one of them!

(Unfortunately) We are not alone. (Thank God) We are not alone.

Calling all travelers

Here I go again... using Eden's blog to my personal advantage. But desperate times call for desperate measures. Here's the deal... Brian and I NEED A VACATION and are looking for suggestions from you on where we should go. Hopefully I don't need to explain why... but if so... here's a brief recap.

Eden was born sick = stressfull

Eden wouldn't eat (or grow) = frustrating beyond belief

Eden has moderate-to-severe case of seperation anxiety = exhausting

Eden spent 5 months on the heart transplant list = no travel outside of Denver

Eden received a new heart 8-6-08 = gut renchingly difficult

Eden is immuno-compromised = traveling is complicated

Eden still wakes up 50% of the nights = sleep deprived

We've had no real vacation since Eden was born (not including a couple weddings and 24 hours in the San Juans) = REDICULOUS!

Now do you understand??

Here's what we are hoping for:

1. A week away from our house, our work, and sorry to say... our kid (refer to list above)

2. Warm weather (preferably within beach proximity)

3. Sleep and relaxation

4. Possibly an all-inclusive type place so we don't have to think too much

5. A good deal

6. A great recommendation... :)

In the name of all who love Eden Raine - please don't let me down! Think hard. Where have you been that you love? Where have you heard other's raving about? Talk to your friends, talk to your cubbie mate, talk to the guy next to you on the bus, metro, or plane.... and then talk to me! There is a handy little section called comments for this exact purpose. If you don't have a gmail account it is not quite so easy to comment here, but you can surely send me an email. You know the address, right? kerajane@gmail.com

Great. Can't wait to hear from you!

My future's so bright....

... I've gotta wear shades!

Funny lines for the day...

"Eden, today's a special day. It's Obama's Inauguration. Can you say - IN-AUG-UR-A-TION?"

"NO!"

"Come on, Eden, try. IN-AUG-UR-A-TION"

"NO!"

"Please?"

"No, Mommy. I can't say inauguration!"

(You just did)

Then, after Eden had commented several times throughout the day about 'President Obama, this.... and Obama's our president that...' I was feeling very successful and decided to show off to Brian at the dinner table.

So I say, "Eden, can you tell Daddy what Obama is?" "Who is Obama?"

She looks up at him with complete confidence and says, "A ROCK STAR!"

Well, I guess after a full day of CNN, he must at least seem like a movie star.

This is our little 'rock star' in the bath tonight...

... what a great day.

Trip to Holland

Welcome To Holland

copyright 1987, 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 guide books 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 guide books. 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 a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has 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, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

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

I first read this story just weeks after Eden was born (thanks to my aunt Rosalyn) and it has come across my desk several times since. Each time I read it differently, finding myself in a new stage of coping with Eden's life challenges. But everytime I cry like a baby!

Currently, we are weighing the decision to have more kids. It is true, what the author says, the pain of Eden's heart condition will never, ever, go away. It has robbed me of my innocense as a mother and I am forever changed. Don't get me wrong, we have fallen in love with Holland - all short, hairy, and full of attitude! Do we really want to get back on that plane?

A letter home

Dear Daddy,

We have had a great time in Western Kansas, but I've missed you terribly. We survived the road trip without your driving skills. Even though mommy's knuckles turned white a time or two, she did a great job of entertaining me with a game of "I spy out the window". I learned several new words... like grain elevator, windmill, and tumbleweed. Mommy's also not as good at keeping my necessary electronics charged - both the camera and my dvd player have died, her laptop however seems to keep working. Hummm? We spent a fun two days with Grandma NeNe, cousins Campbell and Whitney, and the rest of our family in Garden City. I love Campbell so much! I just follow her around and copy everything she does. She taught me to duck at the camera, lounge while watching TV, and ride a scooter. She is one of the coolest big kids I know... well, you're pretty cool, but you're my daddy! We're back at the ranch now and will be heading home tomorrow. I can't wait to see you! (I've even cried myself to sleep a time or two because I miss hearing your voice.) I hope that you have had a great time in the mountains and have saved enough energy to give mom a break when we get home.

Your dearest daughter,

Eden Raine

Best Gift

Some of Eden's most profound statements come out of her mouth while sitting in the car seat. It must be some sort of a throne for her. At the very least, it is her thinking chair.



This morning, as we trod around town - running errands - wandering through Christmas sale aisles - squirting hand sanitizer - and recounting the same discussion over and over... Eden says,



"Christmas is all done, right mommy?"

"Yep, Sugar, it is over."

"Santa's not coming to our house anymore, right mommy?"

"Nope, not until next year."

"I already got all my gifts, right mommy?"

"That's right, you've finally opened them all."



And this discussion happens at least three more times.



Finally, we are heading home... and somewhere in between Eden giving me directions and telling me to turn up the music she says,



"Know what my best gift was mommy?"

"No, Sweetie, what was it?"

"My heart".



GULP!



"You are SO right Eden, that was the best gift many of us received!"



I realize that she is probably repeating her version of something we have said to her over the last month or so. But, I can't help but wonder... at some level, does she get it?

Time will tell, time will tell.

A bitter-sweet farwell

Today I am the same, regardless of my hopes to enter 2009 a better version of myself. Since I didn't wake up on Thursday morning a changed person, it looks as though I must resolve to work a bit more.

Brian and I had our annual discussion of resolutions - those as individuals and as a couple/family (we even made a few for Eden... i.e. regular toilet use!). Most of these you don't care to hear, but it was interesting to revisit the year we left behind.

Goodbye 2008....

... We entered you with great doubt.

... The news of a bad heart.

... Eden given a year to live.

... We quickly celebrated Brian's 30th year and Eden's second

... then settled into our 5 month wait for a heart.

... Kera began running everyday.

... Brian waved to the mountains from downtown.

... We vowed not to travel: no weddings or funerals or births.

... We joined a family we never knew existed at the Children's Hospital.

... Our house got sick (sewer was replaced)

... Our car got sick (a/c replaced)

... Our dog got sick (various lacerations)

... And finally, when we didn't think we could wait any longer, the call came!

... Time suddenly sped up.

... Eden soared through her heart transplant.

... She was walking in 3 days,

... home in a week,

... and has been running ever since.

... She broke her leg,

... then her arm,

... and we gave thanks for an active child.

... Family and friends came to our rescue.

... We celebrated 5 years of marriage - without which this journey would not be possible.

...The holidays came so we could rejoice one more time.


... Goodbye 2008.

A soft landing

We gratefully arrived back in Denver for Christmas Eve in our own home.

To enjoy a heart tree

Gifts galore

The Polar Express and a warm fire

An "angel"

Joseph and Mary

and a naked jay bird in a fir tree.