Musings of a Marfan Mom

August 11, 2017
by marfmom

Long Time, No Blog

Hello, Blog! It’s been awhile! Here’s a quick recap of what’s happened in the past 6 months:

– I had a hysterectomy.

– We adopted a baby girl, Baby E, and she has the most delicious cheeks you’ve ever seen. We were matched before our home study was finished, which was a huge difference from our first adoption process.
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– Libby Sparks, my friend of twenty years, my and J’s nurse practitioner, and E’s namesake, died. With her passing, I’ve lost all the women who taught Young Maya what being a Marf is all about. While Libby didn’t have Marfan syndrome herself, she understood the value of the community in a way that most non-Marfs don’t. She spent a good deal of time over the years connecting me with other affected people. She attended the conferences and chaperoned the kids’ program, often with her husband. When I moved to Columbus to pursue graduate school (not my first choice, but multiple circumstances made it the best choice), she told me that she believed God wanted me there because I had work to do in the Marfan community. It was Libby that supported me in starting a network group there, and asked me to create a CEU course on diagnosing Marfan syndrome in the ED for my Masters Project. She is the reason I felt comfortable having biological children, and the medical professional who supported me through our adoption process with Miss R. J called her “Doctor Libby,” and “My Libby,” and he trusted her completely. I’m selfishly grateful that she knew about E and was able to see pictures of her before she died. Libby was adored by all her knew her, and without her there is a hole in my life that will never be filled.
– Mark’s dad passed away shortly thereafter. Early onset Alzheimers is a horrible, horrible disease. He was an amazing grandfather and I hate that he missed out on really knowing his three granddaughters, let alone future grandchildren. My boys at least will have some good memories.

– My grandfather died a few days later.

– J got fitted for his first wheelchair and it’s amazing and I’ll be blogging about it soon, complete with video!

– Mark went to China for the first time, for work, and got an unexpected taste of the Chinese healthcare system.

– We traveled to the Marfan Foundation’s annual conference. This year it was in Atlanta. It was the biggest conference to date and, as always, a great time to reconnect with our genetic family.

– I’m speaking at an AHA policy meeting next week!

What has gone on with all of you?

March 5, 2017
by marfmom

M & J’s Oscar Commentary 2017

The Menininho (8) and J (6) are at it again with their critiques. Some parental comments are sprinkled in. Let’s get to it!

Ruth Negga, in Valentino:

M: Too ordinary.
J: This reminds me of a cardinal.
Mark: Nice ribbon.

Naomie Harris, in Calvin Kline Collection:

M: Yah, you’re gonna wanna go buy something else.
J: I don’t like it. That big cut in the middle is ugly.

Ryan Gosling, in Gucci:

M: Hey dude…
J: OH. EM. GEE. I love it! I wish I had one of those shirts!

Brie Larsen, in Oscar de la Renta:

M: Why would you use a bunch of dead bats for your dress?
J: I love it! I love that curve in the dress. It’s awesome!
Mark: Oh my goodness, she looks like she’s being eaten by a giant fish!
Maya: The dress is fine, but that is some “I just stepped out of the shower and didn’t even comb it” hair.

Meryl Streep, in Elie Saab Couture:

M: I love it.
J: I kiiind of like it. There’s sparkles on it, but the rest is just blue.
Mark: It’s majestic.

Emma Stone, in Givenchy Couture:

M: It looks like you just robbed a bank. Give them back all that gold!
J: Where did you find the gold?

Hailee Steinfeld, in Ralph & Russo:

M: Hello Captain Underpants! Next time don’t wear a see-through dress!
J: Disgusting! I hate see-through dresses.
Mark: Flower nipples are not….NO.

Chris Evans, in Salvatore Ferragamo:

M: One of a kind! I like it!
J: I love it! I love this shade of blue!

Leslie Mann, in Zac Posen:

M: (side eye) Neeeeext!
J: I don’t know what to say! It makes me hungry. It reminds me of unripe bananas! It’s awesome!

Taraji P. Henson, in Alberta Ferretti:

M: It’s too ordinary. It doesn’t have enough color in it.
J: I don’t like cuts in the dress. It looks like the dress got murdered.

Dakota Johnson, in Gucci:

M: Your necklace looks like the logo from Mighty Minotaur on Lego Nexo Knights. I don’t know how to describe this dress but it looks cool.
J: She should have a bow in her hair, not on the dress.

Amelia Warner, in Emilia Wickstead:

M: Guards, throw her to the dungeon! The dress is so ugly it should be a crime!
J: Dalmation dress.

Pharrell Williams, in Chanel:

M: You’re the best man I’ve ever seen and I like your smile.
J: Snazzy! Especially the bow and the 3,045 necklaces!
Mark: At first I thought he was going for a musical staff motif, and then I realized it was just necklaces and so I was less impressed.

Kirsten Dunst, in Christian Dior:

M: The dress is too big and poofy.
J: The only thing I like about this is the necklace.

Jessica Biel, in Kaufmanfranco:

M: Good thing my eyes aren’t sensitive. Yikes!
J: Gaudy.

Chrissy Teigen, in Zuhair Murad:

M: Is that dress made of Elmer’s glue and then you got a bunch of confetti stuck to yourself?
J: Her dress looks like fireworks.

Viola Davis, in Armani Privé:

M: I like her wallet. I like the dress.
J: I don’t like the cut-off in the shoulders.

Dwayne Johnson, in Robert Mata:

M: High five!
J: Blue fuziness! I love it!

Halle Berry, in Atelier Versace:

M: Her dress reminds me of cities at night.
J: It got shredded by cats, or by Shredder from Teenage Mutant Ninja Turtles.
Mark: Whoa. The hair and the dress are competing for attention.

Nicole Kidman, in Armani Privé:

M: Whoa whoa whoa whoa WHOA. You should REALLY not make a dress that’s your skin color.
J: I don’t like the pattern and I hate everything else.

Octavia Spencer, in Marchesa:

M: You + a weird bird = that
J: It looks like something is trying to eat her.
Maya: I’d like this more if the proportions were better…the skirt being up so high shortens her.

Janelle Monae, in Elie Saab:

M: Is it possible to catch night and put it on a dress? I love it!
J: LOVE. IT. Look at all those patterns! Awesome, awesome.

Best Dressed:
M: Janelle Monae
J: Emma Stone and Leslie Mann
Mark: Ryan Gosling and Meryl Streep
Maya: Taraji P. Henson and Janelle Monae

Worst Dressed:
M: Leslie Mann
J: Nicole Kidman
Mark: Janelle Monae
Maya: Naomi Harris, Jessica Biel, Dakota Johnson, and Amelia Warner. I could not narrow it down.

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