The Worst Winter Weather

For Mama Kat’s Writers’ Workshop, I intended to write on prompt #2: describe your worst winter weather story. However, as I explained to Mark the particular story I’d chosen (how my 23rd birthday was ruined), he pointed out that really, this is the story of HIS worst winter weather experience. He’s totally right. He’s also gracious enough to let me write about it anyway, as long as I acknowledged I’m tweaking Mama Kat’s prompt.

In Ohio, snow comes Oct. through April. It shouldn’t have been a surprise that we had an honest-to-goodness blizzard in March, but it was, mostly because I had plans. See, Mark and I had been married for almost a year at that point, but only been living together a couple of months. He was finishing his Masters as I was starting mine, so he moved back in with his parents and commuted the 3 hours to visit me on weekends. As you can imagine, it put a kink in socializing with other couples.

But not for our birthday! Our birthdays are in the same week and I had planned a small joint celebration dinner party. Our good friends Megan and Scott were coming over and I was making the Brasilian meal I make every year for my birthday: pastels and black beans and rice. This was just the sort of thing I imagined we’d do as newlyweds.

Then the blizzard hit. The day of the party.

Early in the day, I realized I was missing a few ingredients and asked Mark to go to the store. The roads were questionable, so he decided to walk the 8 blocks to get there. I called him a little later b/c I’d forgotten to add something to the list and unbeknownst to me he was already halfway home, so he turned around and went back. NOTE: If I’d KNOWN he’d left the store I would have told him to forget it. Just sayin’.

Halfway through making dinner, Megan called to tell me that their car was stuck and they wouldn’t be able to make it. I was so disappointed! Stupid snowstorm! Well, the roads were pretty clear by then, so Mark decided to go pick up Scott and Megan. Our car was snowed in too, so he gave a kid with a shovel some money to dig us out. The car moved about 5 feet before getting stuck again, and that was that.

Mark and I enjoyed our Brasilian meal by ourselves and stayed home for a few days. I believe even church was canceled that Sunday. And come to think of it, I never fulfilled my promise to Megan to cook her a Brasilian meal. It was the worst winter weather for me because I lost my chance at our dinner party, and for Mark because he actually had to go outside in it.

Here are some pictures from Blizzard 2008:

And can I just say? I am LOVING being in California now!

Marfan Through a Husband’s Eyes

Today is the last 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.

You’ve heard from my mother and my brother. So, today I bring you my fantastic husband, Mark.

Mark and I met over 6 years ago, in college marching band, and were dating within 3 months. He was the very cutest trumpet player and leader of the band cheers. These days he’s an analog integrated circuit design engineer. In his spare time he enjoys building blocks with Menininho, experimenting in the kitchen, and playing Starcraft and TES4 Oblivion.
I always dated tall girls.

I mean, I was the shortest student my age all throughout elementary school, and the situation did not improve much in the following years. Pretty much everyone looked ‘tall’ to me. Nonetheless, I always dated tall girls.

Therefore, pictures of Maya and I from some of our early dates, when she would show up in high heels and stand, literally, head and shoulders above me, really do not seem all that unusual.

Homecoming 2005

I don’t remember when she first mentioned “Marfan Syndrome” (or, as I incorrectly called it for at least a year, “Marfan’s”), as it was never a game changer for me, just another data point. I certainly did my research, starting from Wikipedia. then going into greater detail, and reading up on resources from Johns Hopkins, The Mayo Clinic, and papers and publications by Hal Dietz. I wanted to be able to join dialogues between her and her doctors on an educated level, to be able to logically take and argue her side when a doctor brushed off an event, and to understand the many choices she made about her health.

We hadn’t been dating too long (well… 2.5 years?) when our first emergency room trip together occurred. While dancing at our university’s winter formal in downtown Cleveland, Maya began to experience a rapid and arrhythmic heartbeat, which was recorded by her Holter Monitor. Maya was engaged in an extended effort to convince her doctors that these arrhythmic episodes were something worth looking at, rather than just an example of running-up-the-stairs-too-fast; so even as I helped Maya recover, we hurried to a phone to send the results to the hospital computer. The on-call, however, gave us a surprise, saying that there was “something unusual” and told us to report right away to the Cleveland Clinic Emergency Room. Though nothing came out of the late-night-became-morning visit and we never quite learned what “something unusual” meant, the following five hours waiting, talking, and playing card games in a room at the ER turned out to be one of our most memorable and most enjoyable dates.
“Conference” was a term I had heard used with reverence by Maya ever since I first learned of Marfan syndrome. Supposedly, it was a veritable Mecca in more ways than one for the Marfs… “Someday, you’ll get to see it, Mark”. Years later, I was taken along to meet the Marfamily at the annual National Marfan Foundation Conference which was held, that year, in Boston. Unbeknownst to me, the great Marfamiliy honors marital affinity–I was now married into this family as much as any “in-law”. I was certainly an outsider to this network of camaraderie stronger than that forged between my lab-mates in the trenches of 6 AM graduate school meetings, but invited nonetheless. They danced, discussed, met, and mingled, and I saw Maya naturally slide into her role as leader, older sister, and sometimes even mother of the hundred-odd middle- to high-school aged kids gathered in the teen program.

But Marfan syndrome exists outside of the momentous occasions, as well.

Marfan syndrome’s activity restrictions have, over time, extended to the both of us in one way or another. We obviously do not hike winding trails and climb gorges like I did when I was younger, nor will long walks on the beach ever be a part of our repertoire. The opposite is true in other ways: As Maya has a limited ability to stand for long periods of time, I am on my feet from the moment I get home from work until well after the baby is asleep in bed.

Most unusual–to me, at least–is that Marfan syndrome seems to produce anger. I attended a support group for “unaffected spouses”, as they called us, at the Boston NMF Conference. The opinion there was fairly universal that the pain, limitations, and uncertainty of Marfan syndrome engendered a vague, undirected anger that seemed to creep into relationships. But, as has been mentioned by Maya’s mother and brother both, Maya began long ago and continues to take this anger and drive it, bit by bit, into her unending activism and defense of those persons and causes she takes under her wing.

We have had our share of scares from doctors, both from medical speculation (“I think she might not have Marfan Syndrome, but rather …. “), or right out misdiagnoses (“I think it’s a dissection! … oop. No it isn’t. Again.”), but they are events that we address as they come and pass as they go, rather than living in fear of them. When Maya’s geneticist speculated that she may have the life-threatening Vascular type of Ehlers-Danlos syndrome, I saw no reason why that should change the nature of our relationship. Maya and I approached the information with a similar stoicism, yet we still met the negative test results with a doubled sigh of relief.

It is because day to day life does not get to be put aside that we are able to continue; to get engaged in Washington DC, get married in Columbus, have a son, and begin to raise him in California.

Marfan syndrome makes every day harder than it could have been, but it is a part of who Maya is, through and through. And now, it is a part of me, too.

And I wouldn’t trade it for the world.

The Most Special Christmas

I talked recently about my favorite Christmas, but that post got me thinking about my most special Christmas, which was in 2006.

That fall was a busy time. My brother left on a mission trip; I was planning my wedding to my college sweetheart and filling out graduate school applications. Then, in a six-week period, my father died, my mother was diagnosed with breast cancer, and my brother became injured and had to return home.

Needless to say, I wasn’t really excited about the holiday. Christmas had been Dad’s favorite time of year and it just wasn’t going to be the same without him. Mom started chemo while I was taking finals. My brother was undergoing heavy physical therapy. We also had our good friends (a mom and her 5 kids) move in with us for the month of December while they were between houses. I just wasn’t in the mood to celebrate and I didn’t see how the holidays this year were going to be anything other than something to get through.

I wasn’t counting on Team Regina.

When Mom was diagnosed, some of her best friends at church created a website called Team Regina to coordinate any help that she might need during her treatment. During the holiday and after, this small group snowballed into something amazing. Pretty soon not only was our entire congregation involved, but most of our small town as well!

One woman helped us decorate for Christmas, since none of us were able to lift the heavy boxes from the basement up to the first floor. Another woman came in January to help put everything away. During Mom’s second chemo session, a lady from town came and decorated our living room pink and left us each a pink present. Other families brought meals, provided rides, knitted hats, and offered massages for Mom’s tired muscles. Someone did the “12 Days of Christmas” for us, leaving a little gift by the front door each day.

I’m sure I am forgetting other acts of kindness, but you get the idea. These families, some whom were dear friends and others whom we did not even really know, were angels on Earth. Never has the true Spirit of the season been so manifest to me and I hope God has blessed them all richly for their acts of pure charity and love.

Female Bonding

Like most families, we have many Thanksgiving traditions: fried turkey, my cranberry salad, the Stinky Boy Room, and Euchre. None, however, top the Female Bonding Ritual: Black Friday shopping.

My first Thanksgiving with Mark’s family, 6 years ago, I was a little intimidated by how intense the women were, but now I look forward to this all year. As soon as the dining room table has been cleared from dinner and everyone has their slices of (the 5 kinds of) pie, the advertisements come out. I think there are about 10 pounds worth, I kid you not. We draw names for the family gift exchange and set to creating our shopping lists. This takes at least a half hour, as we scan the ads for the best deals for each item and make shopping lists specific to each store. Then, we coordinate who is going to which store when, and who is going to be the designated “Kohl’s Jewelry Counter Girl” in order to secure the best jewelry selection. We usually hit Kohl’s first and have one person stand in line while the rest of us bring in our loot.

And did I mention that one of the aunts does a run through of some of the stores on Wednesday, to get a feel for the layout ahead of time? TRUE STORY!

After Kohl’s we always meet for breakfast at McDonalds to give us a chance to regroup before hitting up Target. Following Target we split up for the rest of our shopping, which goes off and on until early evening.

There is a certain appeal to finishing the Christmas shopping in one fell swoop (I was done by 8:30 AM this year!), but I think the real enjoyment comes from the thrill of the hunt and just spending time together sans the boys.

 

What kinds of Thanksgiving traditions do your families share?

Frying

Mark’s brother demonstrates how to fry hush puppies (using polenta):

Video of the men frying the Thanksgiving turkeys:

How Mary Saved Me from Teenage Mortification

This week I’m answering the MamaKat’s prompt #5: Describe a moment you felt embarrassed by your parents

I think a more apt prompt would be “When WEREN’T you embarrassed by your parents?” My mother is not usually one to over-share or cause a scene (except when she passed my baby picture around my class in middle school, or took my girlfriends and me to see Spice World [I only saw it out of peer pressure, I tell you!] and screamed OH MY GOSH THOSE ARE NAKED BUTTS COVER YOUR EYES! during the “male dancers” part…). My father, on the other hand, was a bipolar artist. We lived in a small town and EVERYONE knew who he was, for better or for worse.

Now, in high school we lived in a house whose back could be seen well from the highway. Not built by us, it was an open-beam home and had been constructed with a crane dropping in the skeleton of the house, which caused attention in our town: enough that we got a lot of unsolicited feedback when we did some necessary remodeling.

Christmas was Dad’s favorite season of the year. He loved to decorate the house inside and out, sometimes in unconventional ways. The new house proved to be his perfect canvas, and our first Christmas there he decided on a blue theme.

I don’t have a problem with blue Christmas lights. I do have a problem with abstract designs done randomly all over the exterior of the house in those huge, no longer sold, blue Christmas lights.  Frustrated with trying to detangle the lights, my dad literally threw the whole lot of them onto the side of the house and nailed the mess in place.

You can imagine the comments I heard around town.

The icing on the cake though occurred when I was being driven home from a babysitting gig by a neighbor. “Oh my GOODness!” she yelled as she slammed on the breaks. “YOU HAVE THE VIRGIN MARY ON THE SIDE OF YOUR HOUSE in Christmas lights! How did your father DO that?”

I looked at the mottled mess.

“Oh, you know, he’s really creative like that.”

Please don’t strike me down for that fib. I was an embarrassed teenager.

Piece of Cake

I think I was 9 that summer. My parents bought a fake hammock (you know, one of those that comes on a stand) for our front porch and I was content to spend hours on it reading. My 7-year-old brother was content to cause trouble, and on this particular day did so by tossing me out of the hammock and onto the concrete porch.

I was hurt, but not so hurt that I couldn’t run and wake my parents from their nap. “Matthew pushed me out of the haaaaaamock!” I cried. “You have to PUNISH him!” My father opened up one eye and surveyed my brother and me. “I’m going to need some time to think of a punishment to fit this crime, “ he said, then dismissed us to await his decision.

Really, this was genius. It bought my parents more time to sleep, it placated me, and my brother spent several hours squirming with mental anguish over what our dad was going to do to him. Eventually my parents got up, we did some chores and got ready to go to the pool. Still, no punishment. My brother was getting so panicked that Mom insisted Dad mete out the consequence.

At this point in the story you might think that the punishment was the worry over the punishment, but you’d be wrong. My father, an artist, was more creative than that. With my mother, baby sister, and I waiting by the van to leave, he instructed my brother to stand in the middle of the front lawn.

My grandfather lived nearby in an assisted-living community. Each week the local grocery store would drop off their too-old-to-be-sold baked goods for the seniors, and Grampa Pai would bring us a batch. Most of the food was totally inedible, and this week was no exception: Grampa had delivered us a stale, robin’s egg blue cake. It was this cake that my father took outside to my brother.

Before you could blink, Dad had smeared Matt with blue icing and yellow cake head to toe!

My father laid a towel down in the van for Matthew to sit on, then made him shower in the POOL SHOWERS, you know, the ones with spiders in the corner and that smell vaguely of chlorine and pee? The HORROR! For my 9-year-old self, there could be no better punishment for my dastardly brother.

Now, I realize there are some parents who would cry foul over this. They would say punishments should be more related to the misbehavior and that fear is unnecessary and cruel, and they’d probably be right. But you know what? Matt never pushed me out of the hammock again, we all had a good laugh after the fact (him included), and now that Dad is gone, this is one of our fondest memories. It always makes us laugh, and I respect his creativity in parenting.

I was so excited to see my prompt (#1) posted at Mama Kat’s for this week’s Writers Workshop! And then I realized the story I created the prompt around doesn’t actually fit the prompt, because it’s about my brother being punished and not me. But whatever. I’m taking artistic license. If you can’t do that when it’s your own prompt, when can you, right?

A Halloween Past

I’m pretty sure I came straight from the womb as a Tree-Hugging, Bleeding-Heart Liberal.

You doubt me?

Each September, my mother asked my siblings and me what Halloween costume we wanted her to make for us. As a 7 or 8 year old, I requested a princess costume. But not just ANY princess costume, mind you. Princesses are frilly things who wait to be rescued by princes. I’d definitely grown out of insisting that everyone at church refer to me as “Cinderella.”

No, this year would be different. I would trick or treat as the Be Kind to Animals Princess.

[Incidentally, I believe this was the same year I wrote a heated letter to the editor of the local paper bemoaning the over-industrialization of my neighborhood because I felt it was encroaching on the deer’s natural habitat, and because Mom told me I was too young to personally plead the case at the Zoning Commission meeting. But that’s neither here nor there.]

I give my poor mother props for attempting this costume. She created a dress out of our mauve (or was it plum?) colored futon sheets, though it looked a little like a wizard’s garb. The sleeves and bottom were trimmed with silver zigzag piping and she used puffy paint to attempt various animals along the bottom of the skirt.

Just in case that wasn’t enough to get my theme across, I decided that instead of the usual “Trick-or-treat!” I’d say “TrickOrTreatI’mTheBeKindToAnimalsPrincessSoBeKindToAnimals! Thanks!”

That lasted all of 3 or 4 houses and as many confused looks before I chickened (excuse the pun) out.

I wish I had some video of this to show Menininho someday when he complains about being “different,” as most children inevitably do, so that I can prove that I used to be different too, but still turned out OK.

I mean, I did turn out ok…right?

* This post in honor of MamaKat’s blogging carnival, in which I am responding to prompt #5.

The 3 Cs

We just got back from a whirlwind weekend in 3 of Ohio’s Cs: Columbus, Cumberland, and Cleveland. I’m still in awe of how much we managed to squeeze in. Menininho was beyond a champ! I just wished we’d had more time to see people.

We got in Friday evening. I’m convinced that there are 2 keys to an easy flight with an infant: a Boppy and a sling.  Menininho loved laying on the Boppy in my lap, which freed up my hands some. When he was ready for a nap, I just rocked him to sleep in the sling and then I could nap, too, since he wasn’t going anywhere.

It took forever to get our rental car (the company was out of small cars, even though that’s what we ordered, so they gave us a free “upgrade”: a jeep SUV. PERFECT for our cross-state roadtrip…not.) We met my brother Matt and his girlfriend, Deanna, at Polaris for dinner, then hung out at his apartment for a bit. It’s the last time I see Matt for a long time…he’s moving to New Orleans in a few weeks 😦

Sat. morning Menininho and I had brunch with two of my girlfriends from grad school. To those of you in Columbus: I really recommend Vic’s Cafe on W. 5th street!   Then, it was off to Cumberland for Chris and Erica’s wedding!

Chris and I have been friends since freshman year of high school. He and I were both in the percussion section. Freshman year we were part of a group of guys (I was the only girl) who would get to band early to play euchre. I’ve always been able to count on Chris. He even drove down from Ashland to come to Dad’s funeral. Every year we still get together at my place on New Year’s Eve with a couple of other guys from HS. I first met Erica at one of these parties, and I liked her right away. She is absolutely perfect for Chris and it just made my week that I was able to be at their wedding.

We left the reception a little early to make it to Cleveland at a reasonable hour.  Menininho slept great and we were at Case early in the morning Sunday for Mark’s graduation. He had left the tickets for the Commencement ceremony (which is separate from the diploma ceremony) at home, so I needed to walk across campus to get spare tickets from one of my girlfriends. However, I ran into a little problem.

See, thanks to my pregnancy, I don’t quite fit into my dress shoes anymore. I’ve been living in my black flip flops. Old Navy flip flops really are the best. They’re cheap and form to my feet. I was just thinking the other day though, that I’ve had these for almost 2 years and maybe I should get new ones. Turns out I shouldn’t have procrastinated so much. Partway across campus my left shoe broke. Beyond repair. Mark ended up taking off one of his dress socks and putting it on my foot so I wouldn’t need to walk all the way across campus barefoot in the freezing cold. Fortunately for me, the bookstore had opened at 8 for all those graduates who had procrastinated getting their robes, and they had one pair of flip flops left in just one size smaller than mine. Whew!

The graduation ceremony was really nice. Menininho and I got to walk across the stage with Mark.

It was a great trip! Hopefully we’ll be back (longer!) for Thanksgiving 🙂

Update by Numbers

We’ve had a lot of things happen over the past few weeks that I haven’t blogged about!

1) Menininho had his first ever play date. My friend Anne  and her daughter were in town visiting family and invited Menininho and me over to Anne’s parents’ house.

2) We attended our first event with the Northern California Chapter (Marfan). It was a day-long symposium on pediatric issues. It was so much fun to see people I haven’t seen since July’s national conference and Menininho was a BIG hit! Mark and I were also invited to sit on the chapter’s steering committee, which brings me to #3:

3) I am now helping plan the chapter’s annual BBQ. We expect about 150 people to come. I was co-chairing the event and then learned I’m the only person on the committee with fundraising experience (hooray March for Marfan!) so now I’m heading the fundraising instead of co-chairing. I’m excited about it. 🙂

4) Menininho had his 2nd play date with a church playgroup of sorts. It’s organized by another congregation, but a woman in my congregation knows the ladies who run it so we got invited. It was held at this really cute park that’s also a farm. Roosters just walk around the place and then there are pigs and sheep and cows and goats and a PEACOCK for the kids to see. I loved it; Menininho slept through the entire thing.

5) Now that I am Relief Society Director of Music, I have to plan 5 minute music lessons every week. If you have suggestions of lessons I can teach, let me know!!!

6) WE’RE GOING TO OHIO THIS WEEKEND!!!  I am really nervous about how Menininho is going to do with the plane ride and time change and all the people, but he’s been such a champ about everything else in his life thus far that I’m trying to be optimistic. Wish us luck!

Tomorrow is going to be insane tying up loose ends for the trip + a last minute doctor’s appointment, and we leave a little after really early Friday morning for the airport.  Can’t wait!