my Jump Rope for Heart presentation

Last summer another mom from our school asked me to meet with her and our local youth market director from the American Heart Association regarding our school's annual Jump Rope for Heart (JR4H) event.  I tagged along to the meeting, truly clueless as to any input that I might provide the cause, but willing to do what I could to help.

Since then we've found ourselves knee deep in Jump Rope for Heart and I have to say I count myself blessed to be doing it.  The kids are having a ball (or is it a rope??)  actively participating in the planning and prep work, as well.

Last week I met with our PTO to promote our 'new and improved' event and to share why the American Heart Association is near and dear to our hearts (I even created a power point - woohoo fancy!).  I thought I would just document those words here, as well.  I've told the story before here, but I am doing at least one more presentation in the weeks ahead, so I'm counting this as "practice" also, knowing public speaking just isn't my forte!

Here goes:

"My name is Karin and I am the mother of four sweet kiddos:

My oldest are 10 year-old twins, Mr. T and Pookie.  Meiners is 7, and then we have Sashi who is four.

Our twins were born in 2001, and at four days-old, Pookie was diagnosed with a congenital heart defect.  Specifically, the cardiologist called it a 'complete a/v canal,' which basically means she had a giant hole in the middle of her heart where the blue blood mixed with the red blood before it all got pumped out into her body. 

To make a long story short, she truly struggled to survive the first few months of her life.  It was difficult for her to eat because she couldn't coordinate the suck/swallow/breathe pattern newborns use innately.  We needed her to weigh 10 pounds before she could have surgery on her heart, so by the time she was 6 weeks old we were feeding her with a feeding tube in her nose.  Eventually we had one placed directly into her tummy --- she didn't eat by mouth until she was five years-old.  The first four months of her life are kind of a blur, being a new mom - to twins, one healthy, one struggling to survive, but we finally made it to the day we'd been waiting for: open heart surgery.  She was four months old...and the surgery was a huge success!  I remember dancing by her bed in the ICU, so excited that the 'sick chapter' was finally behind us and we could go on with our lives.

Unfortunately, within just a few days, Pookie spiked a fever.  It was determined that methycillin resistant staph bacteria (MRSA - the nasty bug you hear about on the news today) had attacked her heart and eventually it destroyed her perfect repair.  We nearly lost her a number of times after that first open heart surgery.  We watched her become addicted to morphine and live on a ventilator.

But by the grace of God, she survived all of that, and she is now the survivor of 6 open heart surgeries.  She'll be followed by cardiology her entire life - she goes every six months and even had a procedure done in the fall because she was having - in layman's terms - little heart attacks during exercise.  We've sort of taken the year off from PE but she has been allowed to go back this month with strict warnings to rest if she gets tired or feels any sort of chest pain.  She takes medicines every day to keep her blood thin because she has an artificial valve in her heart.  She has to have her blood drawn every month, she can't eat certain foods, and she's banned from sports like gymnastics due to the risk of falls and bleeding.  The great news, though, is that she is doing very well.  She won the spelling bee in her class this week.  She loves to sing and dance and is participating in a very cool song-writing project through St. Louis Children's Hospital.  She's had a bumpy road, but she is truly one of our miracles.

That's our Pookie.

Then, in 2004, we had Meiners, and at 2 weeks-old, he was diagnosed with a congenital heart defect as well - an incomplete a/v canal.


 His story is different than his sister's - he has had only one open heart surgery.  He is our smart, athletic, rascally heart kid,  He'll be followed by cardiology his entire life, also.  But despite his heart defect, he, too, is doing very well.

Most people are unaware that congenital heart defects (CHDs) are the most common birth defect in the world.  In fact, one out of every 100 babies is born with a heart defect.  CHDs are the leading cause of infant death; of the one million children born with a CHD each year, 100,000 of them won't make it to their first birthday.  Twice as many children die each year from CHDs than from all pediatric cancers combined, yet five times more money is given for pediatric cancer research than for CHDs.

My mission - and our family's mission - is to increase awareness of and research for CHD.  We also want to be a light of hope for congenital heart disease.  There are an estimated two million CHD survivors today, and for the first time 50% of those are adults!  We not only want those numbers to improve, I want my two kids to be counted among them!

The American Heart Association (AHA) shares our vision.  Their mission statement is straightforward:  Building healthier lives, free of cardiovascular disease and stroke {CHDs are considered under the 'cardiovascular disease' umbrella}.  Their focus is on educating the public on the importance of heart health through topics as broad as childhood obesity to how to cope with life after a stroke.  They provide us all with help planning exercise routines; they offer delicious heart-healthy recipes; and they teach us how to live longer, healthier lives. 

In 2009, the AHA donated close to $10 million for CHD research.  This positively impacts my family because money donated by the AHA led to the development of the first artificial heart valve.  We look forward to new medicines being developed that will thin Pookie's blood without requiring frequent blood draws;  and we also anticipate procedures that will allow her valve to be replaced through a simple catheterization procedure instead of invasive open heart surgery - which doctors are already doing in some cases!  These advancements may be on the horizon with additional research!  We look forward to improved quality of life for our kids and for all our heart friends!

Our school has been invited to share in fundraising efforts for the AHA.  This year we are super excited to bring a new and improved Jump Rope for Heart to our school.  We began in January already with a Heart Health Awareness essay contest.  Then on January 20th, we are honored to host the amazing skills of of the ShowMe Jumpers!  All of this hoopla culminates in an exciting school-wide Jump Rope for Heart event on - what our family calls "Healthy Heart Day" - otherwise known as Valentine's Day, February 14th.  AND if students raise $3000, our principal has agreed to let them duct tape him to the gymnasium wall!

Heart issues affect us all.  Nearly 2,200 Americans die from cardiovascular disease each day.  That is one person every 39 seconds.  Heart attacks and strokes takes more lives each year than cancer, chronic respiratory diseases, and accidents combined.  They are also the number one cause of death in women.  So, we wholeheartedly invite you to join us in raising money for the American Heart Association.

Thank you so much for listening and allowing me to come and speak to you!"

**Would you consider helping us reach our goal of increased awareness of and research for healthy hearts?  You can visit our family's fundraising page here.

All the amazing statistics quoted in this post came from the following websites:
http://my.americanheart.org/professional/Research/AboutOurResearch/OurResearch/About-our-Research-Program_UCM_320221_Article.jsp
http://yourlife.usatoday.com/health/medical/heartdisease/story/2011/01/10-myths-about-heart-disease/43124514/1
http://www.time.com/time/magazine/article/0,9171,1004724,00.html
http://www.childrensheartfoundation.org/about-chf/fact-sheets
http://www.loweryourbloodpressurenow.org/the_american_heart_association.html

Tommy on Violin

Our days are as busy as ever despite of our policy of {close to} one extracurricular per kid.  When you count four kids in the mix, every night there's running somewhere, in spite of my best intentions.

Last week was no exception. 

On Tuesday night we invited all the grands over for dinner and a symphony concert.  After a fancy Italian meal consisting of whole wheat spaghetti and a jar of Preggo, plus a salad kit in a bag, and Pepperidge Farms cheese bread, we attended the elementary strings concert.

is that spaghetti sauce on his cheeks?  *sigh*  seriously, who IS his mother?!

It's been fun watching T develop his musicality over the last year.  He began private lessons early last summer and is dedicated to keeping them through the year.  (Provided that doesn't include practicing regularly - wait.  Did I say that?)  I'm super excited that he'll be moving to first part in the upcoming semester - one semester early I might add! - but man alive is it tough to get the kid to practice.

Thankfully his private teacher is super patient...or maybe that's unfortunately?

After reading Battle Hymn of the Tiger Mother last year, some days I feel like a super failure, not sitting on him to practice {for hours and hours} - even though I think he has the talent to be really great.  After pushing the kids to work mega-hard on some things last winter that led to more nagging and yelling than teaching of a solid work ethic, I have to be honest, I'm torn between pushing and allowing.  I just don't remember having to be told as a kid to practice my musical instrument...of course, I faked my practice card at times, so there's that.  But I also remember regularly practicing.  (My mom claims my memory fails me, but she doesn't have a blog to prove it...one day I'll be showing this post to my unpracticing violin could-be-prodigy grandchild, just you wait...)
*sigh*

I just wonder:  Does it ever get easier?  Cuz I hear that being a grandparent is even tougher - worrying about not only your own children but their children, too.

Guess that's why it's just healthier to remember to let go and let God.  And to super-remember that God is good all the time - and when it seems as though He isn't, it is because He is great.

And into his hands I place our violin commitment.
Now, where's the checkbook?

Geocaching @ Plymouth

On New Year's Day we decided to take the kids geocaching.  Before kids, we used to hike pretty frequently.  (The best and the worst was hiking to the bottom of the Grand Canyon. ... Hiking in was the best; hiking out of the Grand Canyon was the worst!)  Since the kids, we've hiked here and there, but really not regularly because of the whole "carry me!" phenomena.  Now everyone's pretty much independent and we can get around with only the worst fatigue bringing out the jello legs.  We've heard great things about geocaching, so we planned our route, chose our St. Louis-themed object to leave behind (an old baseball card), and off we went!

We were truly astounded at how many caches there are throughout our area.  In just one park alone there were ... 50?  Maybe more!  How many times have John and I ran past them on a training run without knowing the secret treasures the woods held?!

We decided our first cache would be a St. Louis one called Plymouth.  We enjoyed exploring an old cave entrance, petting some horses that we came upon along the trail, scaling rock walls, and generally just enjoying gorgeous weather and our family.  Eventually, we came across the old Plymouth - yes, literally in the middle of the woods!

The next step was actually finding the cache - and since we really had no idea what we were looking for, boy did we get lucky when Meiners bent down into a hollow old tree stump and brought out a little plastic box!

Oooooh the kids were super excited to sort through the contents of the box and pick out their prize to bring home!  Meiners was finder, so we let him decide on a Rams drink holder (he insisted on using it at every meal the remainder of the weekend!).

We signed in and left our baseball card before moving on to more caches.

We went on to complete about five more caches total (hunting through my camera bag for additional treasures to leave behind, including a zoo map, an old stub from a ride up in the arch, etc.!), but our first find was by far everyone's favorite!

We searched and found a Harry Potter puzzle box. 

Everyone was excited to let T sit down to figure out how to open it until we discovered this message:

We scaled some death-defyingly tall trees (I'm so brave!):

Then we headed home.  Such a great day and a fun new past time for the family!

Shopping with a 4 year-old

Sashi is an entrepreneur.  Her favorite playtime activity is "shopping."  This is when she arranges things in her room is such a way as to make it look a little boutique-y and then invites me in to "shop."  She's the store owner.  I get to play various types of customers.  (She doesn't appreciate the crabby teenager who's always on the phone.  She does tend to like the cowgirl from Texas, but she mostly asks for the mom lately...)

Before Christmas, she used our coffee table as her register, sliding items across the top and providing a tell-tale "beep" verbally.  About half-way through December, however, she began to confide in me, er I mean her customer, that she would be receiving a new cash register from Santa.  I always oohed and aaahed over the consideration but encouraged her to keep the coffee table one since it was such a unique antique.

Anyway, lo and behold Christmas morning, Santa came through.  He brought her a talking cash register that scans, adds, identifies coins, accepts debit cards, and even offers discounts to repeat customers (no lie).  She was in heaven!

Now, "shopping" has reached an entirely new level.  We go almost every day.  And when we don't go, I get told.  And made to promise that we will go tomorrow.

It is definitely one of those quirky play time routines that I want to remember because it is so endearing.  And will change before I know it.

Cherishing these days.

Merry Christmas from our house to yours

In the words of that crooner Michael W. Smith:

May the ones you love be near you
That's the happiest Christmas of all

Much Love,
Karin


Read more: MICHAEL W. SMITH - THE HAPPIEST CHRISTMAS LYRICS http://www.metrolyrics.com/the-happiest-christmas-lyrics-michael-w-smith.html#ixzz1hW5TnEHo
Copied from MetroLyrics.com

feet firmly planted?

I keep saying lately that I'm doing my best to let Pookie be a star while keeping her feet firmly planted on the ground.  Is it possible to do that? 

Yesterday was just a really cool day for my sweet girl.  A few days ago, Erin Bode's manager - the superbly talented singer/songwriter who is writing a song, inspired by and containing Pookie's actual heartbeat - emailed to ask if she would be willing to sing backup on the song. 

Um, yeah!?!?!?! 

Oh, and the news anchor from our NBC affiliate would be there to interview Erin and Pookie about the story. 

Wow.

So that's exactly what we did yesterday afternoon.

I have to admit I am a bit fascinated by this behind-the-scenes look at the making of the song.  We remain blind to a good part of what goes into the process - Erin met with us along with her music director, Adam, a number of weeks ago.  From our initial meet and greet, Erin and Adam had already penned about three song ideas by the time we toured the hospital with them early in November.  Adam was pretty excited when he heard Pookie's heartbeat on the digital stethoscope.  He commented that the beat of at least one of their songs would coordinate with Pookie's heart sounds.

Yesterday when we arrived at Shock City Studios, the crew had already been hard at work for 4 hours.  We were there, really, at 2:00 to meet with Mike Bush - our local news anchor who does such a great job with personal interest stories in addition to the regular news.

Pookie did a really nice job during the interview.  I have a hard time, sometimes, reminding myself that she is just 10.

And Mike Bush was such a nice guy.  He's the father of four!  It was interesting to hear him voice the same fatherly concerns I hear from my husband.  Life is just so universal.  We are more alike than different, every one of us.

Most of the afternoon, Pookie and little Sashi tried to keep themselves occupied.  Erin noted later - there's a lot of "get there and wait around" moments in recording.  What was most fascinating to me, though, and probably demonstrates my completely simple mind, was how each and every aspect of the song?  Is taped separately.  So Erin sings.  Alone.  Then she sings some background parts.  Then Adam played the guitar.  Then he played the guitar with the strum going in the opposite direction.  Whatever that's called.  Then the violinists arrived.  And wow - second chair in the St. Louis Symphony ~ Hello!  They played with Erin's husband Sid on base.

And finally, Pookie got her next minute of fame by participating in the children's choir for the song.

One little person who is always along for the ride - and who behaved so very well all afternoon, tried valiantly to impress Erin with her version of the kids' part.  She practiced with them.  She sidled her way in to the sound room.  But alas, she sat on the floor - as quietly as a mouse! - and just took it all in. Such a sweet baby girl.  Maybe she'll remember it when she's older and at least be able to say she was there.  :)  Front and center!



Such a fun afternoon.  We continue to thank our lucky stars that we get to be a part of this amazing opportunity.  But can you imagine how hard it is to keep that 10 year-old humble?!  ;)

~Karin

The Minutes :: 12.4-12.10

My good friend Frizzy used to host Five Photos on Friday on her lovely blog Heaven's Gift.  I truly loved that series.  I was horrible at keeping up with it.  But it was a wonderful way to give a week its own props by way of an honorable review.
So - in honor of that which once was, I am giving this post up to last week.  I know, I know.  We're all over-the-moon crazy busy.  It's that time of year.  But it was just such an awesome week.  The kids are all healthy; they're getting along with their friends, doing well in school.  Basketball has begun and schedules are nuts, but everyone made it to their respective practices. { I think. } I started baking again (for the first time in months, literally)...We celebrated St. Nicholas' birthday...The kids did a great job in the Christmas Pageant...Dad built a closet from nothing.  It was just such a good week.  Let's pay it a lil homage, if you will.

I could otherwise title this post:  A Tribute to Pinterest - Thee Whom I Love.  Pooks and I are way into hair right now.  Maybe it's mostly me.  I was pretty darned impressed with myself for recreating this hairstyle on my pretty girl, though, I must say.  I, myself, am Queen of the Messy Bun.



Sash insisted on a photo alone with Santa.  She added it to her wall of friends.  Santa gave her this sign to put in the window with her list of things she wants him to bring.  Now, when he asked her what she wanted, she merely said, "Whatever you bring me."  So sweet.  Somehow she found plenty of ideas for this list.  I think she'll be very happy come Christmas morning.  ;)

St. Nick was good to the kids this year already (December 6th).  Sash's ornament is a ballerina.  Meiners' a Power Ranger.  Pooks = Elphaba (The Wicked Witch of the West) and T's was the golden snitch (a nod to Harry Potter).

Here's another fun Pinterest idea.  (Did I mention I love that place??)  Sashi and I had fun surprising Daddy one morning after some light snow :)

The Christmas Pageant occurred last week, as well.  Our sweet shepherd.  Lovin' that hair.  She gave up on the matching beard, though.  (Can't say I entirely blame her!)

I just ove this four year-old march march marching below in the Christmas program...and the puckered little sideways lips.  She's been making that face a lot lately.  Such focus and determination.  So cute.

And get a load of this pre-teen.  He's still three years away from being a tween - are boys tweens? - but that hair sure makes him look older than 7, I think.  He looks like a brooding teenager.  Maybe pensive is a better word.  John and I have officially decided the kids can have their way with their hair.  What's funny is it can't be short enough for Tommy.  But Matt screams when you mention a haircut.  So different.  But it fits both of them perfectly.

And cupcakes.  Yeah.  I laughed as I delivered these.  Sometimes I get this incredible notion that I can bake cupcakes.  Yet, God humbles me.  {Thank you, Lord!}  These were awful.  Just awful.  Not the recipe.  No, the recipe for the cake was D.I.V.I.N.E.  I nearly pitched them and went to buy a dozen from Dierberg's because of the frosting I chose.  Next time I'll skip the brilliant idea to top the delicious peppermint mocha cake with [ever-so-yummy but way too overpowering] mint cream cheese frosting and just top 'em with chocolate frosting.  Now that would have been Y.U.M.!  Yup.  There's always next time.  {They were pretty, though, which is half the fun!}

So, that was our week-ish in a nutshell.  My man was home most of it, taking some hard-earned vacation time, building a closet in the corner of the boys' room.  The closet looks amazing and will be such an asset to their room.  I sure love my handsome handy man.

Yup - it was definitely a great week.  And only 13 days left until Christmas!  Can you believe it??