February 18, 2010
by marfmom
10 Comments

Home

Mama Kat’s prompt: “The ache for home lives in all of us, the safe place where we can go as we are and not be questioned” ~ Maya Angelou

I have a few different homes. I have the home I live in with my husband and our son and cat. I have my extended family home. The group of girls I grew up with. The congregation I attended from age 11 until I got married at 22. A group of my Alpha Phi Omega (co-ed) fraternity brothers.

The home I’m going to write about, however, is the one I ached for before I even knew it existed: my Marfan home, otherwise known as conference.

All teenagers, on some level, want to be accepted. It’s a time that we simultaneously scream, “I am my own person!” and “Love me, I’m one of you!” So, being a teenager is difficult enough without adding in a chronic illness that affects both your appearance and physical abilities. As I entered into those tumultuous years, I yearned for the company of other people like me.

While some may disagree with me, I don’t believe that an “unaffected” parent or friend, no matter how attentive they are, can really, truly understand life with Marfan. I had great friends and my parents tried to help me sort out this new, different life, but it wasn’t enough.

Attending conference was life changing because for the first time in my life I was completely and utterly accepted. In some ways it was more Home to me than anywhere else I’ve been. That feeling got me through a lot of hard times.

We were pretty hot back then!

Now that I’m one of the people in charge of the teen program at conference, that feeling of home is first and foremost in my mind. I want each and every teen to know that they are that they are amongst family and that they are safe. They are Home.

This is one subject where I don’t think words can adequately describe the emotions associated. My Marfamily is almost sacred to me. So, I’m reposting this video I made of conference. Enjoy.

Conference video

And to any of my readers who have Marfan or are parents of a child/teen with Marfan: Come. If you’ve ever felt that ache for the “safe place where we can go as we are and not be questioned,” come. You’ll find the home you maybe didn’t quite realize you were missing.

February 17, 2010
by marfmom
7 Comments

The Situation

Well, the votes are in. They came from the blog, from Twitter, from Facebook, and emails. The Situation it is (by far).

original photo from http://chichi212.com/files/2009/12/mike-the-situation-306x460.jpg

I think he rocks it, don’t you?

And no, I was not responsible for this awesome picture. Credit goes to April, aka Kethaera. Check out her artwork! She’s awesome.

Honorable mention for a brace name goes to Kristi, aka Tweeting Mama, who suggested Beckham (as in David), with inspiration from the movie Bend it Like Beckham (which, incidentally, stars one of my favorite actresses, Parminder Nagra). While I can’t bend while in the brace, he is bending my back into a straight shape (with any luck!).

Enjoy this picture of The Situation car surfing in Berkley.

Don’t forget to enter the Have a Heart giveaway!!!

February 16, 2010
by marfmom
5 Comments

The Valentine Man

Since having Menininho, Valentine’s Day has become much less of a big deal in our house. Pre-baby, we’d get dressed up and go out for an Italian meal (and for Brasilian food on our anniversary, to celebrate our heritages). This year, we decided last minute on Saturday to try Applebee’s, where I had a very disappointing pasta dish and Mark ended up with some cheese dip appetizer because that was the only thing he could be confident was gluten-free.

Aaaanyway, the point of this post is not to talk about the flies that accompanied our meal (talk about nasty!), but to tell you about a family tradition: the Valentine Man. As far back as I can remember, each Valentine’s Day I received a small gift from the mysterious Valentine Man. When I was little it was a My Little Pony. As I got older, it might be a CD or a box of my favorite donuts. The gifts were never costly, and I appreciated that it was my dad’s way of letting us know he loved us, when his illness often kept him from being able to express that.

The Valentine Man is a tradition that Mark and I want to pass on to our kids. We went through Target tonight, looking for after-Valentine’s deals because, let’s be honest, it’s not like the baby knows/cares, but next year we’ll be more organized about it and do a card and everything. For now, though, Menininho is enjoying the toys he can take to the playground sandbox when the weather warms up in a few weeks.

Do you have any Valentine’s traditions?

And, have you entered the Have a Heart giveaway?