Musings of a Marfan Mom

December 17, 2009
by marfmom
15 Comments

My Life Motto

Today is Thursday, which means I’m writing with Mama Kat’s Writers’ Workshop. I’m responding to prompt #2: What is one of your life mottos?

I’ve thought about it for the past couple of days, and I’d have to say that my motto is “Live your best life.” What does this mean?

1) Don’t compare your life to anyone else’s. Don’t compare your abilities to anyone else’s. We’re all different and it’s a waste of precious time to wish anything else.
2) Take advantage of any opportunity that comes your way. This might mean taking risks, but risks often mean a payoff down the road.
3) Look for lessons learned and the silver lining. Bad stuff happens; that’s life. Don’t waste too much time being sad. Instead, see what you can do to turn the negative positive.

I learned early on, when my best friend died at 13, that life isn’t fair and it isn’t always long. I believe that having Marfan has pushed me into living my best life. I gained an urgency of sorts to do everything that I can as soon as possible because (not to be overly dark, but…) no one is guaranteed to have tomorrow and I don’t know how long my joints will hold out. To that end, by 24, I’ve been able to earn 2 degrees, travel to 2 countries, hold a variety of jobs, get married, and have a baby. I’m slowing down some now, really relishing motherhood. Most days I feel like I’m living my best life. It’s not perfect, it’s not always happy, but it’s ME.

How do you live your best life?

What are your mottos?

December 14, 2009
by marfmom
8 Comments

The Most Special Christmas

I talked recently about my favorite Christmas, but that post got me thinking about my most special Christmas, which was in 2006.

That fall was a busy time. My brother left on a mission trip; I was planning my wedding to my college sweetheart and filling out graduate school applications. Then, in a six-week period, my father died, my mother was diagnosed with breast cancer, and my brother became injured and had to return home.

Needless to say, I wasn’t really excited about the holiday. Christmas had been Dad’s favorite time of year and it just wasn’t going to be the same without him. Mom started chemo while I was taking finals. My brother was undergoing heavy physical therapy. We also had our good friends (a mom and her 5 kids) move in with us for the month of December while they were between houses. I just wasn’t in the mood to celebrate and I didn’t see how the holidays this year were going to be anything other than something to get through.

I wasn’t counting on Team Regina.

When Mom was diagnosed, some of her best friends at church created a website called Team Regina to coordinate any help that she might need during her treatment. During the holiday and after, this small group snowballed into something amazing. Pretty soon not only was our entire congregation involved, but most of our small town as well!

One woman helped us decorate for Christmas, since none of us were able to lift the heavy boxes from the basement up to the first floor. Another woman came in January to help put everything away. During Mom’s second chemo session, a lady from town came and decorated our living room pink and left us each a pink present. Other families brought meals, provided rides, knitted hats, and offered massages for Mom’s tired muscles. Someone did the “12 Days of Christmas” for us, leaving a little gift by the front door each day.

I’m sure I am forgetting other acts of kindness, but you get the idea. These families, some whom were dear friends and others whom we did not even really know, were angels on Earth. Never has the true Spirit of the season been so manifest to me and I hope God has blessed them all richly for their acts of pure charity and love.