Musings of a Marfan Mom

February 11, 2010
by marfmom
10 Comments

The Worst Winter Weather

For Mama Kat’s Writers’ Workshop, I intended to write on prompt #2: describe your worst winter weather story. However, as I explained to Mark the particular story I’d chosen (how my 23rd birthday was ruined), he pointed out that really, this is the story of HIS worst winter weather experience. He’s totally right. He’s also gracious enough to let me write about it anyway, as long as I acknowledged I’m tweaking Mama Kat’s prompt.

In Ohio, snow comes Oct. through April. It shouldn’t have been a surprise that we had an honest-to-goodness blizzard in March, but it was, mostly because I had plans. See, Mark and I had been married for almost a year at that point, but only been living together a couple of months. He was finishing his Masters as I was starting mine, so he moved back in with his parents and commuted the 3 hours to visit me on weekends. As you can imagine, it put a kink in socializing with other couples.

But not for our birthday! Our birthdays are in the same week and I had planned a small joint celebration dinner party. Our good friends Megan and Scott were coming over and I was making the Brasilian meal I make every year for my birthday: pastels and black beans and rice. This was just the sort of thing I imagined we’d do as newlyweds.

Then the blizzard hit. The day of the party.

Early in the day, I realized I was missing a few ingredients and asked Mark to go to the store. The roads were questionable, so he decided to walk the 8 blocks to get there. I called him a little later b/c I’d forgotten to add something to the list and unbeknownst to me he was already halfway home, so he turned around and went back. NOTE: If I’d KNOWN he’d left the store I would have told him to forget it. Just sayin’.

Halfway through making dinner, Megan called to tell me that their car was stuck and they wouldn’t be able to make it. I was so disappointed! Stupid snowstorm! Well, the roads were pretty clear by then, so Mark decided to go pick up Scott and Megan. Our car was snowed in too, so he gave a kid with a shovel some money to dig us out. The car moved about 5 feet before getting stuck again, and that was that.

Mark and I enjoyed our Brasilian meal by ourselves and stayed home for a few days. I believe even church was canceled that Sunday. And come to think of it, I never fulfilled my promise to Megan to cook her a Brasilian meal. It was the worst winter weather for me because I lost my chance at our dinner party, and for Mark because he actually had to go outside in it.

Here are some pictures from Blizzard 2008:


And can I just say? I am LOVING being in California now!

February 9, 2010
by marfmom
5 Comments

CHD Week: Cora's Story

Today I want to talk about a little baby named Cora, and what she’s doing for babies all over the country who haven’t been born yet.

When Cora was born, she was perfect. She had a great Apgar, a mom and dad and extended family who adored her. By all indications, she was a perfectly healthy baby. But on Dec. 6th, 2009, Cora died while breastfeeding. She was only 5 days old. The coroner determined that Cora died from an undiagnosed congenital heart disease (CHD).

It was after this tragedy that I met Cora’s mother, Kristine, on Twitter and I’m proud to count her a friend. I’m in awe of Kristine. She has channeled her pain into creating the organization Cora’s Story. Cora’s Story lobbies for pulse oximetry tests to become standard for every child. They are a quick, inexpensive test that checks a baby’s oxygen levels, which can detect a CHD. Even if the pulse ox is not standard in your state, you can (and should) still ask for the test to be performed on your child between 24-48 hours after birth. I had never even heard of this test before talking with Kristine.

Why am I telling Cora’s story to all of you now? This week is Congenital Heart Disease Week. Did you know that CHD is the #1 killer of babies? Here are some other CHD facts you might not know:
– Between 1 in 70 and 1 in 100 babies are born with a CHD of some kind.
– This makes it the more prevalent birth defect.
– Many CHDs can NOT be detected on the 20 wk ultrasound.
– There are over 30 kinds of CHDs (also called congenital heart defects) known, though not all of them can be detected with any of the various types of equipment currently available.

So, what are some things that you can do to help?
– Tell everyone expecting mom you know to request a pulse ox test for her newborn!
– Blog about CHD Week and link up your blog post on Kristine’s website.
– Add a CHD awareness button to your blog.
– Check out Baby Dickey’s website for a list of other ideas (and a giveaway).
– Become a fan of Cora’s Story on Facebook.
– Send a free e-card from Punchbowl! For every card sent during the month of Feb., they’ll donate to the Children’s Heart Foundation.

The more awareness we raise, the more babies we can save!