My new music

Photo source: www.mytricuspidatresia.blogspot.com

Last August, I googled the words "Eden Heart Transplant", looking for a story that had been written on Eden - obviously assuming that was plenty of information for the world wide web to locate my daughter. To my surprise, she was not the first link to appear, but rather something else called Living For Eden caught my attention. This is how I first discovered the pianist Paul Cardall, his blog, and his story.

At that time, over a year ago, he was waiting for a heart transplant after living with half a heart for over 36 years. He also happened to have a three year old daughter named Eden. I continued to follow his blog - intrigued by his inspirational writing and beautiful music. On September 9th, after waiting more than a year, he finally received a new heart. I continue to follow his story and those of others he highlights with failing hearts. They not only give me hope, they also provide perspective and a larger family for which I feel we belong.

You, too, can read his blog here and listen to more of his music here. I dare you to buy one of his CDs - you won't regret it - I listen to mine so much that I chose to support him (even though he doesn't know it, or me) by sending some as Christmas gifts.

Again, I really hope your season was bright. What a blessing this year has been!

Merry Christmas

Christmas Eve:

Started with the spreading of oatmeal on the lawn

(so the reindeer can find our house)...

setting out cookies for Santa and spinach for the reindeer...

then, waiting patiently for his arrival.

Christmas morning:

Was full of discovering Santa's presents...

and the gifts sent by others...

loving on our favorite gift...

and wishing you all a very, merry christmas...

Home sweet home

Tearfully introducing...

August Redding Murphy

Born 12-21-09 @ 11:37 am

7lbs 6oz, 20 in.

(Perfect!)

More to come soon...

(He's got to get used to this flash in his face all the time.)

'Tis the Season

One advantage to all of this time spent waiting for "little two" is that we have had more time to enjoy the Christmas season. Eden is now on Christmas break (from pre-school) and my mom is here until the baby comes...



We have trimmed the tree with hearts:





We have anticipated the elf on the shelf's arrival every morning:












We have made an advent calendar to count down the days until Santa's arrival:






We have made Christmas cookies:







We even took a very exciting carriage ride through downtown:

Now you can come "little two", REALLY!

In case you are wondering...

we are still waiting...

Dear Santa,

I made this list just for you... hoping for a few fun things for Christmas.

I asked for a baby brother or sister, but you know that I really just want a sister... right?

Daddy says he wants his wife back. What's a wife?

Mommy says she wants a new body. Huh?

Anyway... if you could please bring all of those things along with:

--- a cape (preferably pink)

--- some art supplies

--- a robe like Mommy's

--- and a sled like yours.

Thanks!

Love, Eden Raine

Hope Street

I found myself in the bathroom this morning at 2:00 am, freaking out that I may be going into labor. Although it was a false alarm (darn Turkey Tetrazzini!), I was surprised to realize how scared I am of this next step. You may not know this, but I had a wonderful pregnancy with Eden - even a fairly easy delivery. The events that followed are what haunt me... purple baby, life-flighted to another hospital, in the NICU for weeks.





Yes, we have been watched much closer this time and have no indication there will be any health complications, I would be insane not to wonder, right? More than wonder... I have lived the last 9 months in an emotional state that waivers from fear to anxiety to denial. However, "hope" is what I'd like to call it.







I am hopeful for the best possible scenario. I am hopeful for a baby that cries after delivery, that effortlessly takes it's first breath, and that settles onto my chest to feed. I pretend to care about things like the car seat and a Christmas birthday, but oh how I would fall in love with just good health.

If you're reading this... consider yourself "on call" for what will be in the coming days. I may need you more than you know. (But hopefully NOT)

Scratch that!

Little Two,

I just learned that your carseat has been recalled and a new one will be delivered in 10-14 days!

Can you wait!?!

The invitation

My dear little "two",

I just thought you should know that we are ready for you. I mean, as ready as we'll ever be. We've cleaned all the carpets and rugs...

even in your big sister, Eden's, room...

We've cleaned out the spare bedroom for you (although you'll still have to share with our guests now and then).

Mommy's been to the spa...

and celebrated your upcoming arrival with friends...

I even casted my belly as to never forget the impression you've already made on me.

So, you see... we're ready. Really.

Wouldn't it be nice to have your birthday before Christmas? I'm just saying...

Mental Health Day

Eden stayed home from school with me on Friday... she'd been pretty teary all week and I just felt like she needed a "Mommy and me" day. In fact, I found myself second guessing this whole pre-school thing all over again (she was doing great before the Thanksgiving break).... maybe we were pushing too hard, maybe this schedule is too long, maybe she didn't need to go for another year.

But much to my surprise, guess what she wanted to play ALL day?

SCHOOL!

"work" mat:

snack time:




nap time:

the lesson:

(I was roughly able to follow... something about the location of America on the globe and the stars in the sky...)

Needless to say, she'll be going back to school tomorrow!

The Nesting Crew

came to town.

We walked.

We talked.

We shopped.

We cooked.

We prepared for little Two.

(I'm still in a bit of denial that this is all going to happen.... soon!)

37 weeks

and counting...

Giving thanks for 24 hours of normal

Eden's heart condition inflicted our entire family. Not only was Eden subject to the rare diagnosis of cardiomyopathy and a heart transplant, but I became the rare mother of this type of child; Brian, the rare father, and so on. I have mentioned this struggle before in a former post about medical orphans here.

In the last year or so, we've found a few places where we are not so different. The Children's Hospital Heart Institute has provided nurses and doctors who are familiar with our medical issues, as well as a few of the families we've met there that have also walked down the transplant road.

Another HUGE place of comfort, for me, has been in the Children's Cardiomyopathy Foundation's (CCF) list serve. For the last two years, I have read, written, celebrated and cried with families all over the country/world who struggle with Eden's same (or former) heart condition. Not all of these families need or choose a heart transplant, nor do they have the same cause for the condition, but many of our stories are the same. I have never felt such a family of support like this one, especially amongst relative strangers.

Through this list serve I have befriended the Altieri family. Jackson is their three year old son (just weeks younger than Eden) who had dilated cardiomyopathy before he was transplanted in Boston at 18 months old (about a year before Eden). His mother, Nicole, has been a wonderful resource and shoulder to cry on. We are friends on Facebook, share emails and phone calls, but not until we were in the northeast this October did we get to meet in person. Eden and I had the pleasure to meet and spend the night with their family.

This year, I am thankful for an amazing group of supportive family and friends, for Eden's continued health and progress, for a healthy and very active baby in my womb... and I am especially thankful for a family just like our own, who spent 24 hours with us and helped Eden and I feel normal - syringes, anti-bacterials, medicine schedules, fears, tears, hopes, constant picture taking and all.

Thank you, Nicole... you don't even know how much.