"Let them eat cake"

So you know how some kids don't really know what to do with the first birthday cake and end up not really eating much of it? Yeah, so Bodie's not one of those kids...

He went from this...

to this...

in about 15 minutes flat. How you might ask? Here's how...

A little skeptical at first...

"Ewwwww...mommy, I don't like my hands being dirty like this!" (as an aside, that's probably the point we should have taken the cake away and given him birthday graham crackers instead)

"Well, wait a minute, let me just taste it..."

"Holy crap, that was good! Let me get some more!"

"Oh, what the heck, I might as well double fist it"

Making VERY quick work of the cake

(I should interject here and note that this is about the time where, in true Bodie fashion, he shoved his mouth waaaaay too full of cake, coughed and gagged a bit and then threw up. Lucky for us (and him), we were prepared and caught it all in a towel, which enabled him, again, in true Bodie fashion, to shove the towel out of the way as soon as he was done...and dig right back into the cake. I can only assume he was relieved to get some of his dinner out of the way to make more room for cake.)

"What, like you thought a little mid-dessert barf was going to slow me down?"

And...we start rubbing the eyes...

for the complete effect...
(by the way, he was giving me this look because I took the cake away. HE didn't think he was done yet - I thought that much chocolate that close to bedtime is what they refer to in parenting circles as a "rookie mistake")

Like we said earlier today, Bodie is not one to back down from a fight...I'm afraid the cake didn't stand a chance.

I have to say, when you dream about your child's first birthday, this truly is the stuff you dream of (ok, well, maybe minus the barf, but you get the picture). It was everything we could have asked for. He was SO excited, it was contagious. We could not help but laugh at him...and praise God for our sweet silly son!!!

P.S. Check out bing.com today - the background image is of Bodie, CA!!! See, everyone wants to get into celebrating the birthday of our little miracle! (ok, maybe that's not exactly how it went down, but you know that's how WE'LL remember it!)

Happy Birthday, our sweet warrior

Make photo slide shows at www.OneTrueMedia.com

Dearest Bodie,

One year ago today, we were scared. We didn’t know what to expect. We knew we had a baby we loved. We knew that baby had a serious heart defect. We knew that baby would be fighting for his or her life from the moment he or she left mommy’s tummy. We didn’t know how long that fight would last. We didn’t know if you’d be strong enough for surgery…or whether you’d make it through surgery…or whether we’d ever hold you…or bring you home…or introduce you to your sister...or watch you learn to walk or talk...or celebrate your first birthday with you. We knew we had to trust God to take care of you and our family…and that’s about all we knew.

But one year ago today, we didn’t know YOU. Sweet, determined, stubborn, able to overcome incredible odds, YOU. Oh Bodie, you are such a fighter. We should have known how determined you’d be. Even in the womb, you would constantly shove your little knee into mommy’s side. Mommy would nudge it back into place and you would shove it right back out. And so it went, over and over again. Many times a day. Mommy vs. Baby. As we said, we should have known then that you wouldn’t back down from a fight.

And you have faced one heck of a fight this past year. 3 open heart surgeries, 2 cardiac catheterizations, 100 days in Intensive Care Units and another 36 spent on the regular pediatric cardiac floor, more appointments with doctors, therapists and your cardiologist than we can count, well baby checks and vaccinations, monthly Synergis shots, paraflu and c-diff (at the same time, no less) and let’s not forget MRSA in your bloodstream, lots of teething and little colds along the way. But through it all? Smiles, giggles, learning to roll, then crawl, then cruise. Lots of hugs, waves, high-fives and kisses. A smile that melts your mama’s soul. A joy for life that surpasses what we could ever have expected for you. Oh, we could NOT be prouder of you, our sweet little warrior.

We know your fight is far from over. We know you still have at least one open heart surgery, pacemaker maintenance for life, and possibly a heart transplant someday. But today, on your first birthday, we rejoice in the normalcy of your life right now. We rejoice that we can worry about you eating cheerios off the floor, instead of catching illness in a hospital somewhere. We rejoice that we can be annoyed with your separation anxiety because mama’s in the kitchen and you’re in the living room with sissy, instead of because mama’s at home and you’re in a hospital bed somewhere. We rejoice because you are constantly getting into things you shouldn’t (mama’s Tupperware and sissy’s markers are your favorites) and because you giggle uncontrollably when you’re crawling into the bathroom, because you know you’re not supposed to be there. We rejoice because you hate dirty diapers, but hate being put on your back to have them changed even more (oh, that you could figure out a way for mama to change your diaper without actually changing it!). We rejoice that we can enjoy all of these normal things. Life is so good right now and we are forever grateful for that. We have enormous hope for your future, sweet boy. We hope and pray for many, many more birthdays with you, celebrating the miracle that you are!

Most of all, we rejoice in you. God has given us such a gift in you. You have taught us to slow down and appreciate life, the wonder that is raising little ones. We love you so much and you are our brave little hero. Happy 1st birthday, our little half-hearted miracle!!!

We love you!
Mommy and Daddy

Just because

Just thought I'd post a few pics I've taken of Bodie this week, being, well, the happy silly self he has become lately. His separation anxiety seems to have abated somewhat thankfully and he is happier than we have seen him in months! Praise God!!!

and...we're CRAWLING! Just started doing it today, while his therapist was here! Still just a few tentative movements forward, before he drops down to army crawling and takes off...but it's a great start! SO proud of him!

Nothing like the first pair of shoes to make your baby look like a little BOY! (no, he really didn't need them yet - but he is cruising on furniture these days, and, let's face it, they were just too stinking cute to pass up)

Konked out in mommy's arms...how I love these little cheeks!

You can say that AGAIN...

Why am I fired up about CHD Awareness?

I know a lot of you reading this are probably wondering "why is Amy STILL going on about CHD awareness and research? I mean, Bodie had a horrible start, but he's doing great now. Why can't she just let it rest and get on with her life?" (it's ok if you're thinking this - I'm sure you're not the only one)

Here's why...

I cry out for CHD research because my son's life depends on advances in medical technology. Currently, 75% of HLHS kids will make it to the age of FIVE (and that's the most positive statistic I've read - other stats say it's closer to 60 or 65%). How would you feel if you looked at your baby, knowing those odds? Wouldn't you fight with everything you had to improve those odds? Wouldn't you pour your heart and soul into asking everyone you knew to pay attention to CHD's and fund CHD research?

I cry out for CHD research because my son will never be healed. He will always have a CHD. His BEST case scenario is at least 1 more open heart surgery and pacemaker maintenance for the rest of his life. He will always either have a half a functioning heart (the half that was never intended to pump blood to the body, by the way) that's been rewired to work as a whole heart the best it can. Or he'll have someone else's heart beating inside his body. At the moment, those are our only options. If and when the day comes that he needs a transplant, it will bring a whole host of issues, including forever worrying about rejection and the possibility of future transplants down the road. He will always have exercise limitations of some sort. The extent of those limitations will be up to his heart, his lungs and his body, but at the very least, we know that he likely won't be permitted to play contact sports.

I cry out for CHD research because, when my son is a teenager (God willing, he will live that long), instead of assuming he will live forever like most teens do, he'll have to face his own mortality at the same time as he's growing into an adult. How do you do that? I don't know. The oldest people with his condition are in their twenties and there's only a handful of them. Dusk and I struggle with how we'll help Bodie at that point - we know what it's like to raise a child with a "questionable" life expectancy, but we can't know what it's like to be the one actually living with that questionable life expectancy. How do you find a spouse who loves you in spite of a questionable future? Of course, no one is guaranteed a specific future, but it's just human nature to take our best odds, right? Don't get me wrong: we will do EVERYTHING in our power to raise our son to live a normal life, and we have every reason to believe he will fall on the favorable side of these odds, that he'll lead a happy, normal life. We will teach him about God's plan for him, and encourage Bodie to use his journey how he feels called to use it. And so I shove these worries to the back of my mind...but the realities are still there.

I cry out for CHD research because it's not just about MY son. Truly, Bodie is doing incredible right now. But far too many babies are lost every year to CHD's. CHD's are the #1 birth defect and the #1 cause of infant death before the age of 1. 4,000 babies will not live to see their 1st birthday from CHD's alone this year. CHD's can happen to anyone. Yes, we have a history of heart issues on Dusk's side of the family. But the fact is, I have met more families affected by CHD's with absolutely no cardiac family history than I have met with a cardiac family history. Cardiac babies can be born to healthy parents. Parents who have NO inkling what a CHD even is.

I cry out for CHD research because, like so many CHD's, no one knows what causes HLHS. How the heck are they supposed to figure out how best to treat it if they can't even figure out what causes it? I see so much money going to pediatric cancer research, and cancer is horrible, don't get me wrong (my mom is a breast and kidney cancer survivor, so believe me, I am all about cancer research as well), but CHD's kill almost twice as many babies every year as all pediatric cancers combined, yet pediatric cancer gets 5x the funding of CHD's? What the what??? It doesn't make any sense.

Most of all, I cry out for CHD research, because treatment for CHD's has come SO FAR in the past 20 years. Praise God that my son was born in 2010, not 1980 or 1970. But in 2010. A time when we can now say 75% of kids with his defect make it to the age of 5. He is truly on the cutting edge of medical technology. And I am so grateful for that. But I am greedy. I'm his mother. He's my son. I want more for him. I want the statistic to be 100%. I want to rest in the blessed assurance of knowing my son has a really great chance of making it to adulthood and living a normal life. And the more money that goes to CHD research, the greater chance we have of that happening.

So why am I so fired up about CHD awareness? I can't help it. It's in my blood now. I hope maybe it'll be in yours a little bit, too - and you'll be inspired to make a donation to the Children's Heart Foundation, one of the few organizations that gives a substantial amount of money to CHD research!

Sharing Bodie's Story, Part II

About a month ago, I had the opportunity to be interviewed for The CHD Show with Jim Ferretti. The CHD show is a weekly Internet Radio Podcast. Each week Jim sits down with a survivor, medical professional, or parent to discuss their story about Congenital Heart Disease. I had an amazing opportunity to share Bodie's story, and talk to Jim about how this journey has affected our lives, our family and outlook on life in general. To listen to my interview, go to The CHD Show and select the third one down: "January 6, 2011 - Amy Bennett discusses her 11 month old son Bodie born with HLHS, a form of Congenital Heart Disease." Enjoy this little window into our world!

My Heart Beats Red for Bodie

Thank you SO MUCH to everyone for wearing RED for Bodie on Friday!!! We got so many great pics emailed to us - it's so neat to see where all of our followers and prayer warriors are from! We cannot tell you how it humbled us and just made our hearts swell to hear that so many of you not only took time out of your busy schedules to celebrate Bodie on Friday, but also took the time to email and let me know. :-) What was most touching is that there were people who sent me pictures that we've never even met in person! Thank you so much everyone!

Without further ado...here we are...with our hearts beating red for Bodie...

Us out at dinner tonight, celebrating the fact that the flu, for the most part, has moved on (for those interested, yes, it did turn out to be Influenza - YUCK!, and putting Sierra on Tamiflu pretty much got rid of her symptoms in about 24 hours and Bodie and I were able to avoid it altogether, thank God, by taking Tamiflu prophylatically - Daddy, unfortunately, was too far into his symptoms for Tamiflu to help, so he's still suffering through lingering symptoms):

And Bodie fans!!!

Jill Woods, Salt Lake City, UT

Noah & Zoe Schultz (kiddos of awesome parents Jeff & Kellie), Southern California
Jackie & Hayden (fellow heart warrior!) Cech, Nebraska

Marilyn Banducci, Arroyo Grande, CA

"Gigi" Nancy Gerrish, Nipomo, CA

Brian, Anda & Montgomery Palmore, Austin, TX (formerly of Southern California!)

"Popo" Alan & Grandma Jan, Reno, NV

Cousins Hannah & Amelia Bennett, Denver, CO

(is this not the cutest sign EVER???)

Elliana, Jackson, Layla & Savannah Sievers, Lyons, CO
Ned, Mirabella and Milosh (fellow heart warrior!) Chandler

(yesterday was Milosh's 1st birthday - and today is Mirabella's birthday!)

Sierra's BFF Sofia and her awesome mom Valerie and dad Rik Loyola,

Los Angeles, CA

Sierra's beloved "Teacher Juju" and her sweet Elijah Hernandez,

Los Angeles, CA

Erin, Grant, Levi and Annette Fuller, Seattle, CA

(formerly of Southern California -

and truthfully, we're still trying to convince them to move back)!

Jeremiah, Riley and Hailey Welty, Los Angeles, CA (Hailey is one of Bodie's birth buddies - they were born just 2 days apart!)

Colin, Gina and Dylan Watanabe, Pasadena, CA


There were also many of you who told me you wore red, but forgot to take a picture - thank you SO MUCH for thinking of Bodie!!!

Sharing Bodie's Story

I met a mommy friend, Leyna, back when we were just a little family of 3, long before Bodie was even an inking in my eye (ah, I'm taking just a moment to think about how carefree those days were! We LOVE Bodie and LOVE our family of 4 and would not trade it for anything, but there's not much denying that life was a teensy bit easier a few years ago! ;-)). But I digress. Leyna has 2 little boys - one about a month younger than Sierra and her second a few months younger than Bodie. Both of Leyna's boys are heart healthy, but Leyna, bless her heart, has taken an interest in the heart community and raising awareness for heart kiddos everywhere. This week, in honor of Congenital Heart Defect Awareness week, Leyna is sharing stories of heart warriors, and she asked if I would mind sharing Bodie's story! Would I mind??? I was honored to share Bodie's story!!! So, today, to kick the week off, she is sharing Bodie's story on her blog!!! I'd love if you'd hop on over to her blog and check out Bodie's story - click here. Thank you so much Leyna!!!

Red for Bodie!

Just wanted to pop on quickly to thank all of you who've sent me pics of you wearing red for Bodie! THANK YOU! I'm so excited to share them on the blog! Between caring for all the sickies around here and Mr. Velcro who's not too happy about having to share mommy's attention with the sickies, I probably won't get to post the pics at least until tomorrow, so if you haven't yet, please keep the pics coming my way! (remember - amykbennett@gmail.com). In the meantime, I'll leave you with this...this picture sort of encapsulates life in the Bennett household the past few days...

(by the way, his shirt reads "I cry when ugly people hold me" - just thought it was totally appropriate for velcro boy who pulls out the full waterworks if anyone (ugly or not) so much as threatens to disrupt his personal Bodie-being-held-by-mama space).

Red for our Hero

Tomorrow, February 4th is National "Wear Red" Day - a day to wear red in honor of all of our heart heroes!!! Won't you please wear red tomorrow in Bodie's honor??? I know we have a lot of followers on the blog, many of whom we don't even know. I would LOVE it if as many of you as possible would take pics of yourself wearing red tomorrow and send them to me- then I can share them on the blog! If you would email me the pic, your name and geographic location (at amykbennett@gmail.com), I would really appreciate it!

Oh, and please keep us in your prayers tonight - Dusk has been in bed with the flu since Monday and it appears Sierra may be following in his footsteps. Please pray that her case stays mild and Bodie and I miss it all together (seriously, a case of the flu would likely land Bodie in the hospital, so we really don't want him catching it)!

Thank you - and don't forget to wear red!

February...can you feel the LOVE?

February is a BIG BIG month for the Bennetts! The entire month of February is Heart Month, where we recognize, think about and promote awareness of and funding for, all things heart defect related. Next week, February 7-14, is Congential Heart Defect Awareness Week, where we really focus on getting the word out there about CHD's in particular. Valentine's Day is the 14th, Bodie's birthday is the 16th, his birthday party is the 19th and his Norwood-iversary is the 22nd! So yes, a BIG month indeed!

We kicked it off this morning with pink heart-shaped pancakes (they were pink, I promise, even if you can't tell in the picture!)...

...and then a trip to Build-a-Bear, who, for the entire month of February, is giving customers an option to donate $1 to the Children's Heart Foundation, one of the BEST (and only) organizations dedicated to research SOLELY for pediatric heart defects.

(THANK YOU Margarita for the B-A-B gift certificate!)

We got Bodie a bear with the heart stitched on and named it "Hero"
Bodie checking out Hero:
Best friends

Sierra picked out her very own bear (and an outfit, of course) and named her "Princess." Cannot explain how much fun it was to watch Sierra get so excited about her bear. So wonderful to focus on her for once (any parent of a medically fragile child will tell you that siblings tend to get the short end of the stick, so it is such a joy to focus on the siblings when you can!).
So excited to start by picking out a bear (purple, of course)! Posing with the Build-a-bear "expert" Melissa (just LOVE the face splitting smile on Sierra!)
Watching the stuffing in action (Bodie, by the way, was ABSOLUTELY terrifed by the stuffing machine - I can only assume it's because it makes roughly the exact same sound as the suctioning machine in the hospital - and if I can remember that sound, I can guarantee you he hasn't forgotten it!)
Doing the "heart" ritual before putting the little fabric heart inside each bear:
(rubbing it over her heart - not sure Melissa realized Sierra was actually going to stick it down her shirt, but hey, that's what you get with a 3 year old!)
Sierra with the finished product (note the cheesy grin, again? I am telling you, 3-4 years old is the perfect age for BAB!):
As you can see, we had a blast kicking off Heart Month! Be looking for lots of CHD facts and awareness info in the weeks ahead! But, for just a little preview, here are a few things I bet you didn't know about CHD's...

•••Congenital Heart Defects are the #1 birth defect.•••

•••1 out of every 100 babies are born each year with some type of Congenital Heart Defect.•••

•••Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined, yet funding for pediatric cancer research is five times higher than funding for CHDs.•••