Musings of a Marfan Mom

August 2, 2016
by marfmom
11 Comments

My Mother

It’s been a little over 2 months since Mom died. I can’t use the phrase “lost her fight” with breast cancer, because the cards were stacked against her since we learned the cancer had returned two and a half years ago. It was an unfair battle but she fought anyway. She created a team, argued for a treatment the doctors were reluctant to give, and surpassed everyone’s expectations for her. In that sense, she kicked cancer’s ass.

I’ve started and stopped this blog post many times over the past eightish weeks. My mother was this incredible force and the hole she left feels like a bottomless crater most days. Obituaries serve, in part, as an opportunity for others to know the deceased. My brother wrote a lovely one, but there’s never enough room to say everything. Then he and my sister gave great eulogies at the funeral, but I opted not to because I didn’t want to cry through it.

CCF025272016_0001

So this is my eulogy, my inadequate attempt at showing the world who Maria Regina Figueiredo-Brown was.

She was born in Brasil in 1961, and immigrated to the United States (Ohio) when she was 5. She helped raise her twin brothers who were born weeks after Mom and her parents arrived in Cleveland, and was living essentially on her own at 14. She helped with apartment manager duties while going to school and participating in extra-curricular activities.

She experienced racism, xenophobia, and bullying, not only from her classmates, but teachers as well. She didn’t back down. When a classmate dared her to punch him, she socked him right in the face and gave him a bloody nose. When a teacher insisted on calling her “Figa-frito” every day because he refused to learn her last name, she continually corrected him, even though this typically resulted in him kicking her out of class.

1

Mom says it was almost by accident that she ended up at NYU for college. She had no idea what the process for choosing and applying to a college was, but someone mentioned that NYU had a nice dance program. So on a whim she decided to apply, and people from church gave her guidance.

Mom ultimately decided to become a teacher, because it was a more family-friendly career. While in New York, she danced off-Broadway. Later on, in her PhD program, she found friends to go salsa dancing with, not caring that these friends were much younger. Her graduation celebration was basically just a huge dance party.

It took her 14 years to get her bachelor’s degree due to getting married and having children. I remember my brother and I helping quiz her for her exams. After graduating, she went on to get THREE master’s degrees, and then a PhD. She did this while caring for three children and a husband, all with different illnesses. She didn’t complain, and she showed us that we have no excuses in not obtaining our own goals.

163

She taught us to love Brasilian soccer above all other sports. When we won the 1994 World Cup I had my green and yellow pompoms out for the game, and banged pots and pans outside and screamed with her and my siblings on the porch as soon as the clock ran out. There were real tears the year France beat us. She tried teaching us Portuguese off and on growing up and while my sister is the only one of us kids who is fluent, my boys learned “pare” before “stop” and they know when they’re being chata. A favorite family story is that time at Avo’s house when Matthew just couldn’t grasp the word for “corn” and Mom grabbed his head and repeatedly shoved it towards the food while repeating “Milho! Milho! MILHO!” Mom became a US citizen when I was in middle school. She hated that as part of that process she’d have to reject allegiance to her birth country, so she crossed her fingers for that portion of the oath.

Aside from watching the World Cup, Mom was not a sports fan by any means. But, besides a love of Brasilian soccer, she impressed upon me the importance of hating the Pittsburgh Steelers. In high school she performed in a Cleveland Browns’ halftime show or two and that helped crystalize the rivalry for her.

She was a pioneer in the online school movement in Ohio, went on to research its effectiveness and how our educational system affects students of color. She was a pioneer in the national field too and was really making a name for herself. Her entire career was about lifting up poor kids of color, as she was lifted up, and one of the frustrating things was that I know she could have accomplished so much more if she’d been given more time. We only saw a fraction of what she was capable of accomplishing, but that fraction will have a ripple effect for so many students in North Carolina (where she was a professor) in particular.

Grad PhD 2

She gave of her time and money to the church, even when it was hard or uncomfortable. She was more at home serving than being served, and when she had cancer the first time told me that she understood one of the lessons she could take from it was to learn how to be served by others.

She didn’t believe that everything happened for a reason, but she tried hard to use the difficult parts of her life, of which there were many, to improve herself and those around her.

She loved being a mother. She played with us, took us on adventures, and enjoyed discussions with us, which ranged from social justice issues to listening all about our days, even when my turn sounded like “So first I woke up and then I got out of bed and then I had breakfast and then….”

105

Mom realized we were individuals and supported us in our endeavors even if she didn’t understand them, though she did push us to be musical. We all had to study piano for at least a couple years, but she let Matthew quit after one because she saw it was drums or nothing for him. When I transferred to public school in 9th grade, she convinced the band director to take a chance on me even though I’d only ever played piano. Being in band changed the course of my life in many ways.

Mom is the one who pushed me to be involved with the Marfan Foundation, though she didn’t expect me to become as involved as I did. She didn’t always understand my involvement because of how hard I take the losses in our community, but still supported me. In fact, she took me to my first conference in 1998, and was at many of the others to take care of my children so that i could work with the teens.

We rarely had big fights, but they were nearly all over concerns for my health. When she was wrong, she would admit it. For example, she was dead-set against my choice of college. After my freshman year she wrote the admission office a thank-you letter and told them she had been wrong about the university.

She had the PERFECT principal face, as she called it, and could scare any child and many adults into submission with one glare.

She always said what she meant, and wasn’t afraid of a debate. She was respectful, and people respected her, even if they disagreed. She was the one everyone went to for advice.

She was a Feminist with a capital F. The greatest lessons I learned from her all tie into this, like marry someone who wants you to rise to be the best that you can be, who supports and pushes you. She also taught that motherhood doesn’t mean that you no longer exist, “Your kids come into your life, not the other way around,” she’d say.

142

She was one of my very best friends and I told her it was a measure of her motherhood that her kids called her regularly. Unless she or I was away at a conference (and sometimes even then), I called her at LEAST once a day, sometimes two or three times.

Mom always told us to be grateful, and hammered this home her last few months in particular. So in that vein, I will end this with some of the things I am grateful for:
 – Although I am not thankful for the cancer, I am thankful that it gave us time to say the things that needed to be said.
 – I am grateful she got to meet my daughter. We had had an active homestudy for seven months when she was diagnosed and weren’t sure she would live to meet our 3rd child (if we were ever even chosen to adopt).
 – Not only did she get to meet Miss R, she got to spend some quality time with her and helped me plan her first birthday party, even if she didn’t live to be there for it.
 – We were able to take two meaningful family trips together, one to Portugal and one to the beach.
– She understood that when she was gone, photographs and memories were all we’d have left, so she gave of her time and limited energy to help us create those.
– I know that this isn’t the end, and someday we will see each other again.

135

March 2, 2016
by marfmom
2 Comments

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!

Favorite:
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
0 comments

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!

Favorite:
M: Viola Davis
J: Gina Rodriguez

Least Favorite:
M: Regina King
J: Regina King