Tag Archives: family

The Valentine Man

Since having Menininho, Valentine’s Day has become much less of a big deal in our house. Pre-baby, we’d get dressed up and go out for an Italian meal (and for Brasilian food on our anniversary, to celebrate our heritages). This year, we decided last minute on Saturday to try Applebee’s, where I had a very disappointing pasta dish and Mark ended up with some cheese dip appetizer because that was the only thing he could be confident was gluten-free.

Aaaanyway, the point of this post is not to talk about the flies that accompanied our meal (talk about nasty!), but to tell you about a family tradition: the Valentine Man. As far back as I can remember, each Valentine’s Day I received a small gift from the mysterious Valentine Man. When I was little it was a My Little Pony. As I got older, it might be a CD or a box of my favorite donuts. The gifts were never costly, and I appreciated that it was my dad’s way of letting us know he loved us, when his illness often kept him from being able to express that.

The Valentine Man is a tradition that Mark and I want to pass on to our kids. We went through Target tonight, looking for after-Valentine’s deals because, let’s be honest, it’s not like the baby knows/cares, but next year we’ll be more organized about it and do a card and everything. For now, though, Menininho is enjoying the toys he can take to the playground sandbox when the weather warms up in a few weeks.

Do you have any Valentine’s traditions?

And, have you entered the Have a Heart giveaway?



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Marfan Through A Brother’s Eyes

Today is the 2nd installment of a three-part series: Marfan Through the Eyes of the “Unaffected.” You’ve read my story, but what about how Marfan has affected those around me?

Over New Years Mark, the baby, and I met one of my college girlfriends and her fiancée for lunch. This friend has chronic pain, worse than mine, and at one point during the meal gestured to her fiancée and remarked “Yah, I don’t even know why he’s marrying me!” Her fiancée pointed at Mark and said, “Well, he married her!”

And that got me thinking…why did Mark marry me? [I mean, besides love and all that jazz.] How did he/does he view Marfan that makes him want to stay, when it’s made other guys run away? And from there, I wondered about the effects on my other family members growing up. Aside from the medical bills (OH, those bills!), we never really discussed the impact my illness had on them.

Last Monday you heard from my mother, and today my brother Matthew writes. My husband, Mark, will round out the series next Monday.

Matt is currently teaching 4th grade in New Orleans as part of the Teach for America program. He writes about experiences at the blog Relentless Pursuit of Acronyms. In his “other life,” Matt is a Blues musician and sports journalist.

Hi, I’m Matt, Maya’s kid brother. Unlike my sister, I am neither a mother, nor do I have Marfan. I’m 5’10, play basketball a few times a week, and can’t do any of the bizarre hand tricks that Maya can do because she has a zillion more joints than me or something. Despite me not displaying any of the physical traits of Marfan, I think its fair to say that my life has still been touched by the long, boney finger of the syndrome.

I was 6 (Maya was 8 ) when she was diagnosed with Marfan. I’d like to say that I never thought there was anything different about Maya growing up, but that just isn’t true. She was 5 feet tall when she was 8, which to me, meant she was about 13 feet tall. Despite the fact that she was alarmingly skinny, I assumed that she was going to up to be a professional basketball player, and launch our family (or at least me) into fame and fortune. I remember looking up the tallest woman in the book of world records, and then trying to estimate how long until Maya passed her. How would it be to be the female Shaq’s little brother?

Pesky details like enlarged aortas and dissection dangers didn’t really mean much to Little Kid Matt. Heck, I couldn’t tell my aorta from my armpit. I figured that since my older sister was huge, that she must be good at sports. Being a hyperactive little boy without any neighborhood kids to play with, I would insist that Maya come out and play whenever possible, much to the chagrin of my parents…and probably Maya now that I think of it, since she would have rather stayed inside, doing boring things like reading.

My parents tried to explain that Maya couldn’t be subject to the same kind of roughhousing that might be okay for other kids, but I couldn’t ever understand why…only that she had some sort of vague medial problem that gave her a huge scar on her tummy, and now she couldn’t burp.

I think Maya might have used this for leverage growing up. If we got into a fight, Maya knew that she could smack me, but I could never physically strike back. I grew to resent this a little bit. So she was tall and skinny, and she could make her fingers do this disgusting snapping sound…but from the looks of it, there wasn’t anything wrong with her right? She couldn’t be so sick that a smack in the chest could actually seriously injure her, right?

I think I started to understand things a little better when I turned 11. First, I finally studied the human body in school, and realized just how important all those parts of the body that we couldn’t see are (like the heart). Second, one of Maya’s close friends passed away due to complications from Marfan. In addition to getting an uncomfortable reminder of the mortality of humans at such a young age, the possible severity of my sister’s disorder finally sunk in. This wasn’t just something that Maya might use to get an upper hand in a fight…this could actually kill her. I remember thinking about this at night that year…wondering if something like that could ever happen to my sister.

The event was tragic, but had a silver lining, as it brought out the activist in Maya. Determined not to let something like this happen to her (or frankly, anybody, if she could avoid it), she decided to become an expert on Marfan. This meant that everybody in our house needed to become an expert too. Sure, there were times when I quite frankly did not care what possible connective tissue disorders King Tut or Abe Lincoln had…but deep down, I was impressed at how Maya chose not to mope around, and take charge of her health, even when she was quite young.

Growing up with a Marfan sibling wasn’t always easy, but we made it through pretty well by following a few simple rules. We, as a family, had many conversations about exactly it meant (and didn’t mean) to have Marfan (Matt, your sister isn’t crippled…she just isn’t going to be able to play Rugby with you in the backyard). We had a pretty strict rule about not mocking Marfan, although we weren’t so uptight that we completely lost our sense of humor over it. As siblings, we tried to find mutual activities that we could all participate in, and a lot of the time, I forgot that Maya even had Marfan.

That is, until she started doing those gross finger tricks again.


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Marfan Through a Mother’s Eyes

Today starts a three-part series: Marfan Through the Eyes of the “Unaffected.” You’ve read my story, but what about how Marfan has affected those around me?

Over New Years Mark, the baby, and I met one of my college girlfriends and her fiancée for lunch. This friend has chronic pain, worse than mine, and at one point during the meal gestured to her fiancée and remarked “Yah, I don’t even know why he’s marrying me!” Her fiancée pointed at Mark and said, “Well, he married her!”

And that got me thinking…why did Mark marry me? [I mean, besides love and all that jazz.] How did he/does he view Marfan that makes him want to stay, when it’s made other guys run away? And from there, I wondered about the effects on my other family members growing up. Aside from the medical bills (OH, those bills!), we never really discussed the impact my illness had on them.

So today, you’ll hear from my mother. Next Monday my brother is posting, and Mark will round out the series.

I’ve already written some about my mom, but as a quick intro, she’s a Brasilian immigrant, former dancer, and current PhD student. She raised three kids, four if you count my dad. And this is her story of my diagnosis.
There were a few things about 8 year old Maya that defined her: her love of everything having to do with horses, her skinny arms and legs, and her political activism (yes, even at age 8 she stood up for things, wrote editorials and kept an eye out for unfairness anywhere).

That my children were not athletic was not a surprise to me – after all, the apple does not fall far from the tree. However, Maya’s inability to do some of the most basic things (ride a bike, hit a ball, etc) began to cause me concern when it appeared that she lacked the muscular strength to do them. At her yearly check up I brought up my concerns to her pediatrician, who began to study and measure Maya as if he had never seen her before. He said to me, “I am sorry, I don’t know why I didn’t see it before,” and then he referred us to a life of doctor visits. First a geneticist, then a cardiologist, then an ophthalmologist, and so forth…

I have to admit that the magnitude of the diagnosis did not impact us for a few years. Maya’s condition was not straightforward, so the diagnosis was nebulous – maybe she has Marfan syndrome, maybe it is something else, in the meantime, we will treat her as if she has it. So, for the first few years we did not really think that she had Marfan, we just thought there was something amiss – something that needed caution and concern, but was not as scary as it appeared.

So, our biggest immediate concern was deciding what to do about horse-riding lessons. I was in favor of following the cardiologist’s orders to stop lessons, but Maya’s dad (a horse rider himself) did not want to remove the one activity that was central to her 8-year-old life. So, we let Maya continue through one more riding season. Luckily the horse cooperated until the last riding day of the season when he knocked Maya off and into a pile of manure.
The next year was a growth spurt year and Maya’s dad took her to her yearly doctor appointments. That was the end of horse riding. Maya’s dad was duly frightened by the aortic growth and the memory of the last riding day.

My fears over the next few years was less about what might happen to Maya and more about what was happening to her – she was becoming an angry child. I spent less time on potential problems and more time trying to figure out how to help Maya with the issues that were relevant to her 10, 11 and 12-year old world. This natural tendency to a pragmatic approach has been helpful to me and also to Maya.

I could talk about all the things we helped Maya try, but that is her story to tell.

For me, there have been moments when I shook my fist to the heavens, moments when I was sick with worry, moments when I was sad for all of the things that Maya would miss. There were days when I wanted to lurch out at indifferent (or even mean) middle schoolers, days when I wanted to be able to just go into a store and buy Maya a pair of pants that fit – right off the rack! There were frustrations, set backs, relentless doctor visits and the accompanying bills, and this persistent knowledge that my child is not like all of the other children.

However, I have to honestly say that while these feelings existed they did not persist – mostly we were busy living life. We focused on possibilities not impossibilities. Thus, when Maya could not ride horses, we said, “Ok, let’s see what you can do and let’s do those things.” Maya’s dad took golf lessons with her, we took her swimming, she rode her bike, and we went to art museums, libraries and on short hikes. We participated as fully as possible in every aspect of life. Emergency hospital visits sneaked in and forced us to pause, but once the scare was over, we plowed on. Worries about the future crept into our thoughts periodically, so we did our best to crowd them out with a busy and full life.

This is not to say that we stuck our heads in the sand and pretended that Maya was not affected. We became informed, we read and sought research and experts; we encouraged Maya to become informed, we were diligent about health care, we followed guidelines (sometimes too strenuously). Sometimes we made good choices (helping Maya find a support group) and sometimes we were over-protective. No one parents perfectly.

The bottom line is that we came to understand that we do not control some of the critical aspects of our health. Our behavior can affect our health, but we do not decide who inherits what genes, who develops what disease or all that happens to us. But we can control our responses. And for me, that meant that sometimes I just raised my arms, took a deep breath and rode life’s roller coaster with the wind in my face. After all, if Maya can manage so well, so can I.


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2009 in Review

It’s been a busy year in our household! Here are a few of the highlights:

January: I had just graduated from graduate school and was enjoying doing nothing but being pregnant. About halfway through the month I learned my delivery plans were going to change pretty drastically. My grandfather passed away after a long battle with cancer; his funeral happened while I prepped for my c-section.

February: At the beginning of the month we welcomed Menininho. It was a complicated post-delivery, one that I hope to never repeat. We moved to California and I made my first silly new mom mistake.

March: I learned of the losses of two Marfan friends. Menininho was blessed and formally given a name. Our family came to visit. Mark was diagnosed with Type 1 diabetes.

April: A pretty boring month, but I did blog about some of my baby “must haves”.

May: We started using cloth diapers and won’t go back! Mark officially graduated with his MS. I also had the stress test that started a chain of events.

June: Mark and I celebrated our 2 year wedding anniversary. I also started a series of posts about my life with Marfan.

July: My Life With Marfan posts continued and I prepared for the annual National Marfan Foundation conference.

August: Menininho and I flew solo to visit my mom and sister. I finished up the series and went to my 4th conference, where besides working with the teens I was also one of the closing speakers.

September: My cardiologist discovered a problem with my heart and I decided to wean Menininho early in order to start a new medication. A few weeks later Mark was diagnosed with Celiac disease.

October: We had a mishap at the pumpkin patch, and then better success. I moved my blog from Blogger to WordPress.

November: I relived some childhood memories with MamaKat’s Writers’ Workshop and we got to spend Thanksgiving in Ohio, seeing all of my and Mark’s extended families.

December: The inner breastfeeding advocate in me wrote a post about a woman’s right to breastfeed and the inner patient advocate in me wrote a post about being an empowered patient. We bought a tree, spent too much time in the ER and had a failed Christmas tradition.

I want to thank all of you who read my blog, who give me feedback. I am humbled that you take time from your day to read what I have to write. I look forward to getting to know more of you and your writings in 2010!

~ Maya


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Christmas Eve

I love Christmas. I love the music. I love the crowded malls. I love the decorations. I love the FOOD. I love the traditions.

The best part about our first Christmas as a family of three was the opportunity to create new traditions for our family. Sure, it took some haggling (more than I expected) to figure out which of our respective family’s traditions we’d carry out this year for Menininho. Christmas Eve we’d drive to look at lights and open up our Christmas pajamas. Christmas morning we’d do stockings, read the Christmas story from Luke, eat our (this year, gluten free!) cinnamon rolls, sing a couple Christmas carols, and open presents.

But Christmas Eve I realized we had no Christmas Eve dinner tradition! For whatever reason this seemed totally unacceptable to me, and I pressed Mark about it. We decided that cheap Chinese takeout on the couch and It’s a Wonderful Life would be perfect. And really, this should be NO problem because we live within walking distance from a strip of Chinese restaurants.

We bundled up the baby and ventured out. Our only caveat was needing to find a restaurant that 1) didn’t use wheat in their soy sauce OR 2) had yummy dishes that used no soy sauce. Unfortunately, this was harder than we thought. For starters, I couldn’t convince Mark that it was probably easiest to ask “Does your soy sauce contain wheat?” than to ask “Do you have a gluten free menu?” A lot of people have no idea what gluten is, or may have gluten-less dishes and not know it, but not have a real gluten free menu (we’ve found most restaurants do NOT have such a menu). After about 10 restaurants it was obvious that no one understood what he was talking about, and we didn’t want to chance him getting sick.

Our backup plan was to drive to the mall, where we knew their Chinese restaurant used MSG in their soy sauce, instead of wheat. Unfortunately we realized AFTER we’d gotten Menininho into his shoulder and walked up from the back of the parking lot that the mall had closed 2 hours previous.

I ended up eating 2 cookies and a bowl of applesauce for dinner. I think Mark skipped it entirely. We’ll prepare better next year!

What are some of your holiday traditions? Did you start any new ones after you had kids?


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Failed Attempts

See you all Dec. 28th!!!


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A Call for Books

My younger brother, Matt, runs the blog Relentless Pursuit of Acronyms, about his time as a 4th grade teacher in New Orleans with the Teach for America program. TFA places teachers in low-income areas of the US to bridge the Achievement Gap. I worked for them as a recruiter in college and convinced Matt to get involved with them as well.

In any case, you can imagine that the schools in New Orleans need some help. Matt’s school doesn’t even have a building post-Katrina; they meet in a series of trailers. There are a lot of things his students could probably use, but right now they are desperate for books. It’s difficult to teach reading when there is no classroom library, and we all know how vital to long-term success good reading skills are.

This holiday season, Matt is asking for donations of books. He lists a few specific needs, but he’ll take anything. And, if you have books outside of the 3rd-5th grade level that you would be willing to donate, Matt will make sure they get to other classes at his school, or into the hands of other TFA teachers in the area.

Matt will be making appearances in Arkansas, Wisconsin, and Ohio over the next few weeks and, depending on your location of course, might be able to arrange direct pick-ups. Please consider donating a book (or two or ten) to invest in these children’s future. You can contact Matt at his blog, or leave me a comment here and I’ll make sure that you two get in touch.

And please, pass this on to any friends you think could help. Let’s get his class and his school some great books!!!


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