Eat Cookies for CHD Awareness Week

Hi, Everyone!  I’m not sure what the appropriate salutation is during CHD Awareness Week…Happy CHD Week?…Merry Awareness Week?…Froliche Herz?…L’Chaim?

L’Chaim it is!  Which–if you’ve seen Fiddler on the Roof as many times as I have–you know means “to life!”  And promoting life is really what Congenital Heart Defect Awareness Week is all about.

Tricky foreign language salutations aside, I do want to welcome anyone who has stopped by to visit my little piece of Holland, thanks to shout outs from Cassity of Remodelaholic, Casey of Casey Leigh and Courtney of C. Jane, Enjoy It.  You ladies are awesome-and-then-some for taking time out of your busy lives to help spread the word about The Faces of CHD Pinterest Awareness Challenge.

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A Special Visit from Some of the Faces of CHD

Thank you, thank you, THANK YOU to everyone who has shown their support and encouragement for The Faces of Congenital Heart Disease Awareness board on Pinterest.  Stefenie, Becca, and I have been absolutely overwhelmed by the response.  We went from just under 100 followers of the board on the day of it’s creation to more than 400 in less than 48 hours!  My own Lily and Superkid have been joined by the faces of 35 other people with special hearts…and that number seems to grow every time I check my email!

I want to give a shout-out to some special people who have donated their blogging star power to our cause: [Read more...]

The Faces of CHD – Pinterest Awareness Challenge

As many of you know, I am the mother of two little girls born with congenital heart defects, known here as Superkid and Lily.  I’m also an avid Pinterest pinner–I love collecting ideas and inspiration via Pinterest.

Those two elements of my life had absolutely nothing in common…until today!  With your help, I’d like to help promote awareness of and advocacy for children (and adults) with congenital heart defects by founding a Pinterest board devoted to sharing the stories of families affect by the #1 Birth Defect.  The board is titled, The Faces of CHD – Congenital Heart Awareness Week Feb 7-12, 2012.” [Read more...]

Ordinary Days

I’m very sad that I’m down to something like one post a week on this little blog ‘o mine.  Sorry!  I’m not even going to promise to do better, because things have been a little crazy at our house.

The good news:

  • We had a wonderful Thanksgiving celebration.  Loved having family (Uncle Dustin and his A Team) with us.  My nieces are adorable, and we were sorely tempted to let their parents leave them behind.
  • I’m determined to post pictures of the pies I made for Thanksgiving dinner, because I’m that proud of them.  Stay tuned.
  • Christmas shopping is DONE–at least for my children.  Still working on a few things for the extended family.  But I’m feeling good about it.  I’ve got momentum. [Read more...]

A Visit from The Nutmegger

I’m delighted to welcome my dear friend Erica (a.k.a. Nutmegger)to Holland, today!  She took me up on my plea for blog posts instead of casseroles.  Thank you, Erica!  I met Erica way back when we were both learning how to be wives and mothers.  She was (and continues to be) a wonderful example to me of a woman who never stops learning.  A talented violinist, Erica left behind a academic and performing career to focus on a role that doesn’t necessarily earn her the kind of applause she once received.  She is now a mother of five beautiful children.  

One of my many memories of Erica is of driving up at her house in a panic, handing her my two toddlers and trying to explain with a shaking voice that baby Superkid was in heart failure and I had to get to the hospital with her NOW.  Erica hugged me, told me to drive as fast as I could, and said not to worry about Endeavor and Justone–she’d take care of them.  I believe that run to the hospital turned into an ambulance ride to an out-of-state hospital, and I didn’t see Endeavor and Justone for a week.  They were mothered in my absence by Erica and other dear, sweet friends until I could bring Superkid home from the hospital.  Thank you, Erica, for being that kind of friend!

Erica is about to reveal what the contents of a woman’s purse say about her….take it away, Erica! [Read more...]

The Cure for the Uncommon Nosebleed

This is a totally gross topic.  My apologies.  But the reality at our house is that we are way, way too familiar with bleeding through the nose, thanks to Superkid.

Superkid tends to have a lot of nosebleeds.  Part of this is due to the fact that she has to take a blood-thinning medication to protect her artificial heart valve from blood clots.  And part of it is due to the fact that she has a small artery a little too close to the surface of her left nostril.  (For which there isn’t a simple fix, due to Superkid’s other medical conditions.)

The combination isn’t exactly pretty–especially when her medication is at therapeutic levels.  (Read: when her blood is as thin as her cardiologists want it to be.)  Believe you me, I have the stained sheets, towels, t-shirts, and carpet to prove that.  We have seen some pretty dreadful nosebleeds.  One of Superkid’s worst lasted for 3+ hours, and dripped like a faucet the entire time.  Naturally, that one occurred at 10 o’clock at night while Bionic Man was out of town on business, and involved a late-night trek to the children’s hospital ER with Superkid, Lily, and Lily’s oxygen tank in tow.  The nosebleed stopped as soon as we walked into the ER.  I am not kidding.

And, up until recently, that was the best cure for nosebleeds we knew.  Seriously, we’ve had three nosebleeds worthy of trips to the ER, and all of them stopped upon entry. Kind of an expensive and time-consuming cure, don’t you think? [Read more...]

Healthy Superkid Update

I have not found much time for blogging this last week, and I’m afraid that’s going to be the case until sometime next week.  I somehow think I’m going to have all this extra time when school starts, but I think the reality is that I spend the morning recovering from getting everyone out the door, and the afternoon gearing up for everyone coming back through the door.  Once they arrive, then the action and noise involved makes up tenfold for what wasn’t there during the day.  School totally wears Hunter the Dog and I out, I’ll tell you that much.

Anywho, it’s late, and I’ve got lots to do tomorrow, so this has to be quick.  I just wanted to share the good news that Superkid’s cardiology appointment last week went really, really well.  It was her first cardiology visit in over a year, and her heart looked so good that they told us not to come back again for another year!  That, my friends, is quite a record for us. [Read more...]

Every Heart Has a Story Event

Today I sent my three children off to school.  Hunter the dog and I waved good bye as the school bus drove away (well, I waved, and Hunter looked downtrodden–he’s not a fan of those big yellow monsters that take his peeps away) and then we went for a run.  I took a leisurely shower, after which I let my good friend Nicole in the house.  She’d just dropped off her youngest at kindergarten, and needed some chat therapy.  (I love it when I can provide a service and do my own dishes at the same time.)  And now I’m sitting down to the computer, about to update someone else’s blog widgets and write some articles and be a productive, wage-earning member of society.

I know, my life is just one thrill after another.  But I like it that way–I’ve come to appreciate the magic of ordinary days.

Every once in a while I like to take a break from the glue guns and spray paint and the “fluff” of my life that I generally write about here, and revisit the topics that started my blog.   Last year, I wrote something to explain that, and I want to re-post part of that blog entry, today. [Read more...]