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!

Let's spread the word...its CHD week!

February is considered Heart Awareness Month but the CHD heartland considers this a very special week to bring awareness and honor those who have lived and lost due to being born with a broken heart. So how common are (CHDs) congenital heart defects?

• CHDs are the most common birth defects. CHDs occur in almost 1% of births.
• An approximate 100-200 deaths are due to unrecognized heart disease in newborns each year. These numbers exclude those dying before diagnosis.
• Nearly 40,000 infants in the U.S. are born each year with CHDs.
• CHDs are as common as autism and about twenty-five times more common than cystic fibrosis.
• Approximately two to three million individuals are thought to be living in the United States with CHDs. Because there is no U.S. system to track CHDs beyond early childhood, more precise estimates are not available.
• Thanks to improvements in survival, the number of adults living with CHDs is increasing. It is now believed that the number of adults living with CHDs.

a winter update

I am already failing at one of my New Year's Goals of updating the blog more... I want to document these kids and what our days are like. I'm horrible about working on scrapbooks or journaling, so this blog is about the only bit of information we have and I'm realizing that my memory isn't what it used to be! So much blurs together! I can't let "I'm always busy" keep getting in the way! So here goes an update...

Jace played basketball this late fall-winter. His team did really well, playing other area 3rd graders. As you can see, these guys never lack in the personality department and they are a fun group to watch play!

Miss Maddie loves to perform...always climbing up on things, singing and talking like a talk-show host! She entertains me daily!

She had her winter preschool program at the end of January. She remembered her line from "Snowmen at Night" and sang her cute "Snowflakes" song with her class (phew, always makes this mom-teacher happy when her own child is prepared and ready!) Her favorite thing to do in the winter is "to go sledding" she shared. Too bad we haven't been able to do that this year, hardly any snow!

Maddie loves playdates! She and cousin Jilly had a fun afternoon together, playing dress-up is their favorite.

Sam is a Ham! His cousin Grady actually called him "Ham" for awhile when he couldn't say his "sss" and I'm afraid it might have stuck with us...it's cute. Sam loves to be silly, but he's quite shy with others. His hair is wild, he's started signing "more" "food" and "milk". He also says "Dorda" (Dora) quite clear as well as Mama, Dada, "ooice" (juice) and "nanana" (No,No,No). He blows everyone a kiss, he runs around fast with an agressive right-arm swing, he loves to empty-out cupboards and drawers and he is loved and spoiled by everyone!

Duck Hunter Jace = eating duck two weekends in a row...yuck!

Caden! He is such a great little skiier...he is fast and has no fear. I love watching him, heart palpitations and all! Cade loves us to call him "squirrelly" and he is just that! Always lots of energy but such a tender big brother to Maddie and Sam. I've loved watching Cade & Maddie's frienship blossom over this winter. Cade just finished "Little Dribblers" basketball but I didn't get a pic...

 We've gotten in quite a bit of skiing this winter. The boys are doing awesome and really enjoy it. They have to "wait" for mom often at the bottom of the slopes. We recently hit a very sunny, 45 degree day at Mission Ridge. Thanks to the inversion...home was in the 20's and sunshine never felt so good! Bryan and I have loved the time we've gotten on the hills with Cade & Jace. Fun memories have been made!