Musings of a Marfan Mom

March 2, 2016
by marfmom

The Boys Rate Oscar Fashion, 2016

M (7) and J (5) were PUMPED to critique Oscar fashion this year. In fact, J asked me to bring in a few more outfits than I was planning, because he wasn’t ready to be finished yet!

Mindy Kaling, in Elizabeth Kennedy:

M: Definitely a superhero dress!
J: That looks like a Power Ranger dress!

Heidi Klum, in Marchesa:

M: Fancy! It looks like an artist made that…a sloppy artist. I would give this the most weird emoji, if there were emojis.
J: Not cool. I don’t like that open part (points to the chest). I don’t like that there is only one sleeve that goes with it. I want it to have two sleeves.

Priyanka Chopra, in Zuhair Murad:

M: Looks like a lot of flour made that dress. I like that you can see her legs. I think that must mean it’s expensive, like $2,088.
J: I hate that because I don’t want everyone to see her underwear. I don’t like that she’s wearing no pants.

Orlando Jones, in Hollywood Larry:

M: Stylish! Like a bunch of metal leaves. It’s very interesting.
J: AAAAAAAAAAAAAAAAAAAAA!!!! I LOVE that! I like the designs on his jacket and I love his bow tie and I love his hairstyle.

Alicia Vikander, in Louis Vuitton:

M: Her dress is like a meteor shower in the daytime! It’s also like Star Wars lasers falling from the sky, if the sky was yellow.
J: Ooooo! I love that one! It’s a banana colored dress! I also love her earrings. It’s awesome that it’s short in front and long in back.

Saoirse Ronan, in Calvin Klein Collection:

M: It’s like a sea cave. Her hair is good too…it’s fancy.
J: I like that the front of the dress is all sparkly. I like her earrings…both of them. In the back of the dress I like the things right there (bottom straps) and the ropes.

Cate Blanchett, in Armani Privé:

M: It’s like Cinderella covered with blue butterflies.
J: AWESOME! I love the fake flowers and her hairstyle and her lip jam (apparently that’s what he’s calling lipstick)

Charlize Theron, in Christian Dior:

M: It looks like fire! Why would someone wear an all-red dress? That’s just weird!
J: It’s red like blood. It reminds me of when Jesus died for us and gave us His blood.

Naomi Watts, in Armani Privé:

M: It’s like a disco ball with lots of colors. But you can’t see the disco ball because it’s not on there. Get it?
J: That looks like the Rainbow Fish!

Lady Gaga, in Brandon Maxwell:

M: I’m going to have to say “winner!” It looks like a rocket ship taking off!
J: Hahaha we found Lady Gaga! I hate this! I don’t like her lip jam! Not at alllll! I don’t like her white dress…it’s like the white crayon at our house that doesn’t show up.

Kevin Hart, in Dolce & Gabbana:

M: You win, because all the other men look the same! Except for Orlando Jones.
J: OOOOOOOO!!!! I like the glitter on the tuxedo. And I like the black on black on the tuxedo because black is one of my favorite colors.

Kerry Washington, in Atelier Versace:

M: It’s like someone is sticking their leg out of a white wall. The black lines look like broken bathroom pipes. And you know how I love bathrooms!
J: I like the leather on her dress

Jared Leto, in Gucci:

M: It’s like you’re in a video game and he’s a very handsome man but he has blood running down him. (Note: I have no idea what he’s talking about…we’re a Mario and Minecraft house!)
J: I LOVE that! He looks like a salsa guy. It’s meteor-sauce! The red pipes and the red flower I like, like I like meteors.

Rooney Mara, in Givenchy Couture:

M: She looks like a white, flowerly, stegosaurus.
J: How is she wearing any underwear?! I can see through the dress and there is a hole in it. I do like the open side. I’m glad it has two sleeves.

Michael Strahan, in Collection by Michael Strahan:

M: His suit color is like the top of the ocean.
J: Huh??? I saw that guy on TV. I love this color! I love the vest.

Tina Fey, in Atelier Versace:

M: The necklace looks like it has googly eyes on it.
J: Oh cuuuuute! It’s a cat dress!

Jennifer Lawrence, in Dior Couture:

M: Oooooo! Maybe a WITCH might wear that dress!
J: I don’t like it, because I don’t like all those things on the skirt. It looks like a Giant Creepy.

Chrissy Teigen, in Marchesa:

M: It looks like a lot of red airbags hit her all at once!
J: Awesome! I love it! There are so many glittery flowers on it! Hundreds! I like her hairstyle.

Brie Larson, in Gucci:

M: It’s as dark as lapis. That’s a stone on Minecraft. It’s like they cut lapis into a dress and put a belt of glittery stones on it.
J: I like the glittery belt and her hairstyle and the train on the costume. I don’t like the ripples.

Amy Poehler, in Andrew Gn:

M: It’s like alive at night! Like, all these butterflies are coming to eat on flowers in a CAVE.
J: (stares for a full 30 seconds, then falls down) Mom, I did that because this is SO. COOL. It reminds me of the Phantom of the Opera’s jacket!

M: Kevin Hart
J: Mindy Kaling, Orlando Jones, and ALicia Vikander (“I have a lot of favorites!”)

Least Favorite:
M: Charlize Theron
J: Priyanka Chopra

January 16, 2016
by marfmom

The Boys Rate Golden Globe Fashion

Back by popular demand, M (age 6) and J (age 5) critique red carpet choices. This time, it’s Golden Globe participants.

Denis O’ Hare:

M: Good job! There’s no such thing as boy things and girl things!
J: He’s wearing nailpolish just like me. LOVE. IT!

Jennifer Lopez, in Giambattista Valli Couture:

M: Minion. Banana.
J: Cute! I like the design. Cute.

Kate Hudson, in Michael Kors:

M: Are you candy? You look like a pink tootsie roll. And shiiiiiiny!
J: I don’t like it. I don’t like that her belly is sticking out. No to all of it.

Jaimie Alexander, in Genny:

M: It’s like roundish lettuce.
J: I like her hair and I like the colors and the dress.

Eva Green, in Elie Saab Couture:

M: Glittery! Glittery!
J: I love it!

David Oyelowo, in Dolce & Gabbana:

M: Daring!
J: That’s the best. suit. EVER! I love it so so so so SO much! Purple is my favoritest color!

America Ferrera, in Jenny Packham:

M: Minion Banana, the Sequel
J: I like the necklace and I like the color of the dress.

Alan Cumming:

M: He’s handsome! I love the blue jacket!
J: I love his mohawk and I like this tie and his sneakers!

Jane Fonda, in Saint Laurent Couture:

M: She’s like a little flowerpot!
J: I don’t like that thing on her. And she looks like Jesus.

Gina Rodriguez, in Zac Posen:

M: Cinderella-ish! That’s a good thing. I was just trying to compare it with something.
J: I like the straps on her arms and blue is one of my favorite colors!

Eva Longoria, in Georges Hobeika:

M: Tacky!
J: I don’t like it. TRICKED YA! I DO like it because I like the flowers on it!

Viola Davis, in Marchesa:

M: We’ll call this “snowy, snowy night.”
J: It looks like it’s snowing!

Regina King, in Krikor Jabotian:

M: Flower Woman!
J: I love her cape! She looks like a superhero!

M: Viola Davis
J: Gina Rodriguez

Least Favorite:
M: Regina King
J: Regina King

January 10, 2016
by marfmom

To Sport Or Not to Sport: Balancing Life with Restrictions

One of the most difficult parts about having Marfan syndrome or a related disorder is figuring out how to manage activity restrictions. Affected youth (and some adults!) see themselves as invincible. Parents may be inclined to place their children in a bubble for that reason, though some others opt to ignore doctors’ recommendations entirely. Neither is a healthy approach.

The Marfan Foundation has a handout on activity restrictions. It discusses the basics: non-competitive, non-isometric activities, keeping heart rate low, no collision sports. Serious weight-lifting isn’t advised, nor basketball, or football.

But what about all the activities that are somewhere in the middle? And what if your/your child’s aorta isn’t yet enlarged? Do you take the preventative approach and observe all activity restrictions, in the hopes of slowing down aortic enlargement? Or do you decide to let your child fully participate until they absolutely have to stop, even if that might speed up when surgery occurs? We only have one life, so it’s not as if we can try both routes and see which is best in the long run…we have to make the most thoughtful decision we can and hope for the best.

I was diagnosed at 8 and was already enjoying horseback riding and basketball. I had to give up both. My mother would argue that she and my father took a balanced approach to activities…I might remember Mom in particular as being more of a bubble person (love you, Mom!). Naturally, growing up I told myself that I would parent MY kids differently, if they had Marfan. I would let them do way more than I had been allowed to!

But then I grew up, learned a lot more, watched too many friends die too young, and had kids – one of whom has Marfan. I thought maybe I’d get lucky and J would be completely uninterested in sports. I mean, his mom is a freelance writer, and his dad was nationally ranked in Starcraft2 for a short time. What I’m saying is, the athletic blood does not run through our veins. Except, of course, in J’s. He wants to play all the contact sports. Jumping off furniture? Why not? Knee-high AFOs don’t slow him down.

J has watched his brother play sports, and begged from a young age to be included. I’ve been torn. I know the very real pain of having to give up a beloved activity. But, sometimes you don’t miss what you’ve never had (case in point: due to a stomach surgery I’ve never been able to have soda pop, and that doesn’t bother me). At the same time, if you’re too restrictive, kids can rebel, which can be dangerous. I used to sneak into gym class and participate in all kinds of things that weren’t good ideas.

And so we talk. He’s only 5 but he understands a lot more than you might think. He’s been keeping track of his medications for awhile now (what he takes, for which body system, and when he needs to take it). He self-advocates with doctors. He understands, on a very basic level, why he can’t do certain activities. When the Menininho was playing t-ball last year, we agreed to let J try out his preschool playgroup’s t-ball program. It was perfect! None of the kids had any idea what they were doing. It couldn’t have been less competitive or dangerous. So, in the fall, we allowed him to play soccer in that league. J understands that he is only allowed to play soccer until he graduates the preschool program. I like that there is a clean cutoff. Easier for him to understand, and early enough that he’s not terribly invested in it yet.

This summer, we’ve decided, in conjunction with J’s cardiologist, to let him play t-ball in the regular community league. The nice thing about having an older brother without Marfan is that we’ve been able to test out the leagues first. That’s how we know that even at 5 we would not be comfortable with J playing rec soccer, but t-ball is low key. We haven’t determined whether his cutoff will be the end of t-ball, or the end of coach-pitch. We’ll see how the latter goes for the Menininho this summer.

I don’t know if this is the right answer. My Marf Mom gut says that stopping risky sports before middle school will be easiest, but who knows what J will tell his future therapist? I think that’s just how parenthood goes in general though….muddying through, making the best decisions we can with the information we have, apologizing as needed, and trying to do better.

How do you make decisions about your/your child’s activities?