Musings of a Marfan Mom

January 16, 2017
by marfmom

M & J Take on 2017 Golden Globes Fashion

Who was classy? Who was edgy? Who completely failed? Find out what M, 7.5, and J, 6, had to say (with a few comments from their dad too)!

Olivia Culpo, in Zuhair Murad:

M: Long, long ago there was a woman who wore a dress that looked like people fighting each other in a flower field.
J: I’ll call this the city dress. I like it.
Mark: I’m pretty sure I had that pattern on a towel when I was little.

Pharrell Williams, in Chanel:

M: Is he planning to play in the snow with that hat on?
J: He’s the Jewelry Master. I like the winter hat here. The long coat is nice too.

Sophie Turner, in Louis Vuitton:

M: She looks like a black brownie or smashed up oreos because all those dots on her legs are like crumbs.
J: When you go to her back, it’s not very stylish.In the front the belt looks like a ninja belt though, so I like that.
Mark: I’m reminded of the Emperor’s New Clothes: it’s like she’s missing pieces and doesn’t even know it.

Claire Foy in Erdem:

M: She looks like a giant pile of junk, and the junk is filled with hungry caterpillars who like to eat.
J: Ooooo this is a yes! I like the glitter all over it!

Cuba Gooding, Jr.:

M: Did he try ordering baby clothes instead of his-size clothes? But, I like the plaid.
J: This is just too much going on. He should have worn a plain coat and no tie.
Mark: Suit’s a little small but I like the style.

Sarah Jessica Parker in Vera Wang:

M: She looks half polar bear, half human.
J: White is my favorite color and I love the poofy poofy. I kind of like her hair, but I don’t love it.

Viola Davis in Michael Kors:

M: She looks like she’s made of lightning! It’s in the middle for me, because it’s really just a yellow dress, not that much detail, so I like it but I don’t love it: it’s in the middle.
J: The yellow looks fantastic on her. I like the sparkle lines coming down.

Lily Collins in Zuhair Murad:

M: It looks like 75 seasons of spring were used to make her dress. It’s a worn-out queen’s dress.
J: This is regal. I like poofy dresses.

Donald Glover in Gucci:

M: He’s wearing the total color of the poop emoji. He kind of looks sad.
J: I don’t like brown and purple together.
Mark: I’ve got to agree with M’s assessment, but at the same time it looks really comfortable.

Caitriona Balfe in Delpozo:

M: Firebird! Also, lava versus water: WHO WILL WIN?
J: I really like the neckline here, with the no sleeves. And the orange wrapping around the blue, I just love that SO SO MUCH! Like, SO MUCH!
Mark: Ooooo! That’s superhero-y and classy at the same time.

Drew Barrymore in Monique Lhuillier:

M: She looks like a bird so dead it’s just showing its bones.
J: I don’t like it because it’s mostly just all white. It looks like a big piece of junk.

Thandie Newton in Monse:

M: Is it possible for snow to not melt if there is fire right under it?
J: The gold at the bottom is pretty.
Mark: Taking “the floor is lava” to the next level! I like it!

Emma Stone in Valentino Couture:

M: I like this dress. Pink is my favorite color and I like the stars.
J: I love the stars all over it! It looks like when sunset turns to night.

Ryan Gosling in Gucci:

M: My mom is weird because she thinks he’s cute.
J: I love this on his jacket! Oh wait…that’s the computer pointer. I thought it was part of his jacket. Well, I do like his mustachio.

Jessica Biel in Elie Saab:

M: I don’t understand this.
J: Bummer! Part of the dress is gone…it’s kinda missing.

Nicole Kidman in Alexander McQueen:

M: Wait….whaaaat? What just happened? This is weird and…complicated.
J: Even dumber! Her dress is ripped!

Kerry Washington in Dolce & Gabbana:

M: Can you you get a better dress? Because we can see your underwear!
J: I like her shoulder armor.

Carrie Underwood in Iris Serban:

M: It looks like frosting erupted on you. Can you put it back in its container?
J: That poof is messing up her dress!

Mandy Moore in Naeem Khan:

M: Her superhero name is Midnight Woman and she’d go well with my cat Oliver because he has a black cape, too.
J: DARTH GIRL! I love it! She looks like Darth Vader because she has a dark cape going down her like Darth Vader.
Mark: A little less cape in the back, a little more in the front.

Janelle Monáe in Armani Privé:

M: She looks more like a teenager than an adult. Are you sure that’s the best dress you have?
J: I love this Dalmatian dress.
Mark: That just looks fun!

Best Dressed:
M: Janelle Monáe
J: Caitriona Balfe
Mark: Caitriona Balfe and Thandie Newton
Maya: Viola Davis and Janelle Monáe

Worst Dressed:
M: Viola Davis: it’s so boring, there is no style there!
J: Sophie Turner
Mark: Jessica Biel
Maya: Nicole Kidman and Jessica Biel

December 26, 2016
by marfmom

How You Can Help A Refugee Family

If you’ve spent any time watching the news or reading the news, or even just scrolling through Facebook, you’ve seen images of the devastation in Syria. You may have said to yourself “oh, how terrible! I wish there was something I could do!” It can seem overwhelming to know where to donate, to research which organizations are really helping, and how much of your donation would actually reach families in need.

Enter Humanwire. This is a website that pairs people who want to help with refugee families. I’m going to tell you about the organization, the family that I am chairing a campaign for, and how you can help.

Humanwire works with nonprofits to find and vet refugees to participate. Once families are approved, a picture of them and a brief summary of their story is uploaded to the Humanwire website. Then, people like you and me can choose a family to chair a campaign for.

What does chairing a campaign entail? It’s easy! You choose an amount to fundraise for and how long the fundraiser will run, write a call-to-action, and start sharing your campaign!

What if we don’t reach our goal? Do I have financial responsibility for that as the campaign chair? No, you don’t. The family you choose will get whatever money you raise, whether you meet your goal, exceed your goal, or don’t meet your goal. You have NO financial responsibility for anything.

Can we increase our goal once it’s set? Yes, just contact Humanwire with your new amount and they’ll update everything for you!

How do I know the money is actually going to the family? Great question! There are a few ways. One is via your rewards. Like with many crowdsourcing sites, there are rewards for each level of donation. These include getting email updates, getting an address for the family, and Skyping with the family, among other things. For another way, see the next question.

I don’t feel comfortable just donating money…I’d rather donate for a need. Great! Families also give their hosts a list of needs for each family members. You can opt to purchase an item directly, and a photo of the family with the item will be posted once they receive it! This is separate from the rewards system, but a Humanwire representative said that if you talk to the host of whatever fundraiser you’re donating to, they can work with Humanwire to get you the reward you would qualify for.

How does the money get spent? The host, in conjunction with the family they’re fundraising for, decide.

Does Humanwire take a cut of the money? No. They subsist entirely on donations. When you donate to a family, you’ll be given the option to make an additional donation to Humanwire at the same time, IF you wish.

Now that those questions are out of the way, let me tell you a little about the family that my friends and I are fundraising for. Mohammed, Bassam, and Wessam fled Syria with their parents and some extended family members. Bassam and Wessam are the two eldest, and they both have cerebral palsy. It appears that Mohammed does as well, but their parents do not have the money to take him to a doctor right now.

Currently, their father lists his biggest needs as diapers, medicine, and medical treatment, all for his sons. The older boys are school aged but need special education so they are not currently in school. Their father has been trying to find a job in Lebanon, where they are right now, in order to support his family.

 If he were to come into a large amount of money, the father says he would open his own kiosk to support his family.

My friends and I have a goal of raising $4,000. It would be amazing if we could raise more than that. My family will be Skyping with them on Jan. 4th and I’ll be able to create a better budget at that point. 

As a mom of kids with special needs, I am frustrated, angry, sad, and scared when I can not provide my children with services that they need. But, overall I lead a pretty privileged life. What Mohammed, Bassam, and Wessam’s parents are coping with is on an entire other level. Can you imagine leaving your entire life behind, with all your possessions, traveling to another country and hoping they would take you in, and then having to provide for your children’s complex medical needs on top of that?

Please help my friends and I help this family. We can’t stop the war in Syria. We can’t control how many refugees our country is willing to let in. But, we CAN help THIS family, and in doing so make a big difference in the lives of these children. When there is a way to help, we should take it. You may be able to donate a lot of money. Fantastic! You may be able to donate $5. Fantastic! You may not have any money to spare right now, but you can share this over social media, at work, at your place of worship, at your local library, etc. and encourage your friends and communities to help. Fantastic! Just please, don’t ignore this.

To donate to our fundraiser, go here
If you wish to purchase items directly to the family, go here (and contact me afterwards if you want one of the rewards mentioned in the first link)

December 2, 2016
by marfmom
1 Comment

What I Want My Son to Take Away From Isaiah Austin’s Announcement

* My views here are my own. They are not representative of The Marfan Foundation in any way.

Dear J,

What a time we live in, where Marfan is all over social media – trending twice in one day – due to two famous individuals living with it! However, with such mixed messages as “Isaiah Austin to Play Basketball Again: Is He OK After the Marfan Syndrome Diagnosis?” and “Austin Carlile’s Devastating Message to Fans: ‘I Won’t Get Better’,” it can be hard to know what to think. People are asking what a Marfan diagnosis really means, and how they should live their lives. That’s why I’m writing to you today. There are many lessons that I want you to learn, but one of the most valuable will be how to take care of your body and advocate for yourself.

There is some frustration now, because for two years Isaiah Austin was held as a role model to the youth in our community. He told all of you that yes, Marfan syndrome can make it necessary to adjust your dreams, but you can and will develop new dreams and those new dreams will be amazing. But then seemingly abruptly, he is saying no, he never did leave his dream of playing in the NBA and that basketball is important enough for him to set the risks aside and play anyway. This is not the example I want you to follow.

Right now, the word stable is being used in the media as though it means in remission. This is not the truth, J. Stable for us means that your aorta didn’t grow between echoes. It says nothing about what could happen a day or a year from now. And while doctors may have different ideas about levels of risk, we know that there are some activities that can be universally harmful to us, because of the risk of injury, aortic enlargement, and death.

There has been speculation about the conversation Isaiah had with his doctor. I’d encourage you to reserve your judgement. Such conversations are private. Instead be concerned that the media is calling this the “Marfan Miracle,” and acting as though Isaiah has been told he is cured. We know there is no cure for Marfan.

I have watched person after person die from this disorder, people that I have come to care for and love. That changes you. There is immense gratitude for being part of this community, don’t get me wrong, but there is a heaviness that I live with too. Some people will tell you that restrictions aren’t necessary, that your only limit is your mind. They’ll say that restrictions hold you back. This is not true. I will not parent from a place of fear, but I will parent from a place of caution. To throw caution to the wind is to play with fire, my son. While treatments have improved our life expectancy, Marfan is not a diagnosis to be flippant about.

It is not giving up to live your life within some limits.

My sophomore year of college I took out a notebook and wrote a 5 year plan. Then I wrote another. And another. I had a plan if I went to grad school, and one for if I didn’t. I had a plan for if I married your dad, and one for if I didn’t. I had one that involved kids, and another that didn’t. And when I was finished, I realized that all my plans made me happy. I showed my Type A, slightly control-freak self that there is more than one way to live a good life.

That’s what I want you to take away from this, J. What Isaiah said originally, that is what is true. Marfan will necessitate not participating in some things, like the indoor soccer team you mentioned earlier this week. Some days the pain from this might be intense. You may be mad at your dad and me, and your doctor. As an adult, you’ll be making your own decisions, and deciding what risks to take. I promise you, if you put your safety first, you will find so many options for happiness.

And while many in the community are disappointed now, maybe our fault is in putting all our proverbial eggs in one or two baskets. Role models are important, but we don’t need someone famous for that, nice though it may be. When you go to conference, you only have to look around to see a host of people who have learned and are learning to make new dreams. I pray that you live your life in such a way that someday you will be such an adult for the youth coming up the ranks.


Your mom