Musings of a Marfan Mom

May 3, 2011
by marfmom
0 comments

A Couple of Requests

I have a couple of favors to ask of you, fabulous men and women of the blogosphere.

1) I’ve come in contact with a woman who is 15 weeks pregnant and experiencing rapid growth of her aorta. As of this time, she doesn’t have a Marfan or related disorder diagnosis, but the standard of care is going to be pretty similar no matter the cause of her aneurysm. She would really love to talk with any other women who also experienced rapid aortic growth during pregnancy. If you did and are willing to talk with her, please let me know either in the comments or through a direct email to me and I’ll put you in touch. Let’s spread the word and get this mama the support she needs!

2) The National Marfan Foundation is competing in the Chase Community Giving contest. If they’re are in the top 100 nonprofits by the time phase one of the contest ends tomorrow night, they will receive $25,000 and the chance to compete for a $500,000 grant. Please, take a moment and vote for them! The NMF has played such an important role in my life and can do so much good with the money. If they make it to the 2nd round, I’ll definitely be posting about their plans for the $500,000 (each finalist organization submits a proposal).

Thank you! You all are fabulous!

May 2, 2011
by marfmom
3 Comments

Processing

Had another post set to publish today, but I’ll save it for tomorrow. Tonight, I’m trying to process things.

On September 11th, 2001 I was in Senora Baldwin’s Spanish 3 class. It was 2nd period and we were discussing ser vs estar and making jokes. Just before the bell rang, Mr. Smith got on the intercom and told us there had been a bombing at the Pentagon and more information would be forthcoming. Then we heard about the towers, and people rushed to the office to call home to inquire about loved ones. Most of us didn’t have cell phones then. After the 15 minute mid-morning break I headed to American History – Mrs. Lewis’s class – and we watched the replays of the planes hitting the towers on the news. My classmates Jeremy and Liza stood near the tv, holding each other, and I knew the world had changed and I’d never forget that small moment of beauty in the midst of all the pain.

Tonight, after I’d just finished dinner and we were preparing to put the kids to bed, my friend Debbie asked me if I was watching the news. The president was about to make an announcement about national security, she said. I flipped the TV to CNN, where all Wolf Blitzer knew was that the announcement wasn’t about Libya. Maybe Osama Bin Laden is dead, I speculated to Debbie and my brother, whom I’d called and instructed to turn on the TV. Then I got on Twitter and saw that indeed, Bin Laden was dead and his body was in US custody. I spent the next hour reading tweets, some funny, some poignant, and watching the news, waiting for President Obama to speak. I was connected to the world in a way that was unimaginable a decade ago.

The excitement was contagious. I think that it was a massive surge of adrenaline or release of a decade of tension, not over the death of a man, though I suppose that was part of it, but also over the closing of a chapter in our history. Our way of lives changed forever that day almost 10 years ago, and now the man responsible for that is dead.

Is it wrong to celebrate the death of an evil man? Was that really what was happening tonight? Is the world a safer place now? Will there be retaliation? Does it bring us closure as a country, for 9/11? What happens next?

I think that some of these are questions that we as a nation are going to be grappling with for awhile.

This is what I do know though. I know that I’m grateful for those troops who go where they’re ordered and sacrifice so much. I’m grateful for their families and the sacrifices they make. I pray we can bring our troops home soon. I pray that our country can rise above the hate and fear and show love. I pray for peace.

May 1, 2011
by marfmom
8 Comments

Project Smile: April

The past few days I’ve felt really overwhelmed with gratitude. I was in the process of creating a blog post around that when I remembered that since it’s the end of the month, it’s time for the Project Smile (hosted by Kristi and Alicia) blog hop anyway!

I get to go to Ohio and Wisconsin in 3 weeks! I haven’t been home in a year and have been terribly homesick at times. One of my brother’s best friends is getting married and we’re going to bless Baby J in the congregation I grew up in the next day, and visit so many friends and see our cousins and take tons of pictures and it’s going to be great.

Deep pressure therapy. I loooove the OT who taught me about this! It’s really made a difference for M when he’s having a sensory meltdown. Like tonight….he woke up screaming and head banging and he started gagging because he was crying so hard. Some well-placed squeezes and he was back asleep within minutes. IT’S AMAZING PEOPLE!

Chicken nachos. I got this recipe off a bulletin at church. Cook up 2 chicken breasts (shredded), 1 can black beans, 1 can corn, 1 can tomato sauce, taco seasoning, and a cup of cheese together in a pan. Pour over tortilla chips and top with whatever else you want. They are soooo good.

I get to take a cake decorating class this summer. I have always wanted to and now I finally am. I registered for it yesterday, along with a parent/child soccer class with M. Maybe he’ll do his Brasilian roots proud and be the next Pelé!

These guys. I mean seriously…who wouldn’t wake up with a big smile on their face every morning if they got to hang out with these two? Plus, I get to be at home with them. Mark and I still look at each other almost daily and say “Can you believe these are our kids? How are we this lucky?”

What are YOU smiling about this month? Link on up! (Just click the button below!)