♥ hearts ♥

When I see hearts, I think of her...I think of many broken hearts that fight with every beat. I think of the kindess we've been shown. I think of miracles. I think of the many doctors and nurses who save little lives each and every day. I think of strength. I think of those who have lost their battle. When I see hearts, I don't think of the holiday anymore. I think of Congenital Heart Disease.

 

(quilt made by my mama & Maddie's "cough pillow" she used at the hospital after her Fontan surgery...signed  by our favorite doctors & nurses)

in honor of Miss Maddie!

A friend and preschool mom of mine, Jessica, came up with this fun idea to give back for heart month! She is offering a couple of days of photography sessions and will give the proceeds to a charity of Maddie's choice! Hmmm....we have so many favorite charities, which one will Maddie choose?

purpose in the pain

Have you listened to the band Sanctus Real? I've been drawn to their music after stumbling upon the lead singer, Matt Hammitt's blog: Bowen's Heart a couple of years ago. He and his wife have a son with HLHS. Matt has a real platform to speak about CHD awareness...I admire that he does just that at his concerts. I love this video about his journey and the music from his album, "Every Fallen Tear" is just as touching.

 

 

I am a heart mom

On Feb. 2nd, I enjoyed a wonderful afternoon spent with some heart mama's. A fellow east-sider & friend, Colleen, and I drove over to Seattle for lunch and met with eight other women. Yes, driving over to Seattle for lunch and back is so worth it if you get to visit with other mom's in your same shoes. All of our kids are single ventricle kids with their own unique, complex heart. Our kids range from ages 6yrs to 5 weeks old. We are all at different stages in their care. Two of these mamas had babies in the CICU at Seattle Childrens and I was deeply saddended to learn that one of these sweet mama's lost their baby just two days after we had joined for lunch together. The reality of 1 out of 10 will not see thier first birthday came true in this group. Raising a child with a complex heart can be so difficult...battling for and then losing a child born with a CHD is simply unfair.

I enjoyed making heart cookies and gave each mama this poem with an awareness ribbon attached as a favor for coming. I don't know who wrote this but I'd like to share some words that describe each and every heart mom I've ever met...

I Am a HEART MOM

Tough * Blessed * 1 in 100 * Inspiring * Pushed to the Limit * Prepared * Knowledgeable * Compassionate * Brave * Special * Tired * Grateful * On an Amazing Journey * a Germaphobic * Fiercely Determined * Selfless * Aware of What Really Matters * Amazing * Hopeful * Strong Beyond Measure * Courageous * Seeking Miracles * Sleep Deprived * an Ordinary Woman Caring for an Extraordinary Child * Living for the Moment * Taking Nothing for Granted * Doing What I Think is Best for MY Child * Loving * Willing to do What's Required of Me * "Okay" * a Cheerleader * a Warrior * Worried * an Example * Strength Personified * an Advocate * in Survival Mode * a Student * Lucky * Pleading * Following My Instincts * Nervous * Stressed *

Stronger than I know!

 

my hero

Maddie has been more inclined to talking about her heart, asking questions and giving her side of things lately. I love that she's voicing her feelings and opinions when it comes to her heart. Recently, I received a package in the mail from Seattle Children's. It was her surgery DVD's. Yes, they are recorded and you can request them with medical records.

Since the little ones were taking naps, I decided to pop in her Fontan surgery DVD. I've watched her first heart surgery, so I wasn't new to this type of footage, but I admit that I'll always be taken back when I realize that it's my daughter's chest that is cracked wide open while small tools, surgical thread and needles work away on her beating heart. My chest always tightens and the lump in my throat does not go away. I am in awe of her surgeon each time I see this...how does he do it? It's simply amazing. Well, as I was trying to figure out what "step" he was on, Miss Maddie walked in and sat in my lap. I didn't feel the need to turn it off or buffer what I was viewing and she asked very innocently, "is that my surgery?" Gulp. I quickly replied that yes, it was and that those were Dr. McMullan's hands working on her heart. She wasn't grossed out or confused by it. She asked if she was sleeping during it and so we talked a minute about the strawberry gas she breathed in before mommy left her in the surgical suite and that it put her to sleep so she wouldn't feel it. I love this about Maddie...she has always taken things with stride. But the next words out of her mouth I will never forget...

"Mama, I was so brave wasn't I."

It's moments like these that I know God knew what He was doing when He sent Maddie to us. Only He would know that she could endure this and do it so well. He knew that she would be the one to teach us. Maddie is brave, resilient in many ways, and will always be my hero.

heart sisters

Along this journey, beautiful friendships have blossomed. This special relationship for our family began in March 2008. I met Teagan's dad in the Tully's coffee line at the hospital and her mama in the cafeteria. Oddly enough, Trent and I already knew one another from our high school rodeo days and after a quick converstion, we quickly learned that our newborn daughters were both born with complex broken hearts and our homes were just over an hour apart from one another.

Now almost five years later, I've cherished watching this friendship grow. I like to refer to them as heart sisters. These girls are opposites in many ways...Maddie is tall- Teagan is petite, Maddie is blue-eyed & blond-Teagie has brown-eyes & is brunette, Maddie's missing her right ventricle - Teagan's missing her left ventricle. But despite their differences, these girls have so much more in common... they share a silver line down their chests...a zipper. They share a similar story, they share doctors, their birthday's are a week apart, they only have brothers, they love Tangled and princesses, and together they make one, complete whole heart. These two are both tough, spunky and determined. I've loved watching them grow up together and enjoy dreaming about them spending a week at Heart Camp together someday! The Maxwell's are a special family and we're so thankful God arranged this beautiful friendship for our sweet girls and for our families.

 They loved shopping at Claire's and finding these BFF "half-heart" necklaces!

Hopeful Hearts

Maddie was featured in a CHD awareness video created for the Hopeful Hearts Foundation last year. If you'd like more information about this foundation, click here. Enjoy this wonderful awareness video!