Home

Mama Kat’s prompt: “The ache for home lives in all of us, the safe place where we can go as we are and not be questioned” ~ Maya Angelou

I have a few different homes. I have the home I live in with my husband and our son and cat. I have my extended family home. The group of girls I grew up with. The congregation I attended from age 11 until I got married at 22. A group of my Alpha Phi Omega (co-ed) fraternity brothers.

The home I’m going to write about, however, is the one I ached for before I even knew it existed: my Marfan home, otherwise known as conference.

All teenagers, on some level, want to be accepted. It’s a time that we simultaneously scream, “I am my own person!” and “Love me, I’m one of you!” So, being a teenager is difficult enough without adding in a chronic illness that affects both your appearance and physical abilities. As I entered into those tumultuous years, I yearned for the company of other people like me.

While some may disagree with me, I don’t believe that an “unaffected” parent or friend, no matter how attentive they are, can really, truly understand life with Marfan. I had great friends and my parents tried to help me sort out this new, different life, but it wasn’t enough.

Attending conference was life changing because for the first time in my life I was completely and utterly accepted. In some ways it was more Home to me than anywhere else I’ve been. That feeling got me through a lot of hard times.

We were pretty hot back then!

Now that I’m one of the people in charge of the teen program at conference, that feeling of home is first and foremost in my mind. I want each and every teen to know that they are that they are amongst family and that they are safe. They are Home.

This is one subject where I don’t think words can adequately describe the emotions associated. My Marfamily is almost sacred to me. So, I’m reposting this video I made of conference. Enjoy.

Conference video

And to any of my readers who have Marfan or are parents of a child/teen with Marfan: Come. If you’ve ever felt that ache for the “safe place where we can go as we are and not be questioned,” come. You’ll find the home you maybe didn’t quite realize you were missing.

Lessons Lived, Lessons Learned

Today I’m again writing with MamaKat’s Writers’ Workshop. I picked prompt #5: List 10 things you never knew until you were a mom.

1) Blueberry stains come out. Beet stains…not so much.
2) Don’t ever take for granted the power of a hot, quiet shower. Those are rare gifts.
3) Twitter is absolutely amazing. I might have mocked it before Menininho, but the women I’ve “met” over there since his birth have been lifesavers!
4) I actually enjoy being a SAHM. I thought I’d go crazy after 6 months of being at home, but my kid is pretty fun to hang out with (most of the time!).
5) That said, I’ve learned it’s vital to me that I’m not just “Mommy.” I’m happiest when I have some time to write and put my Masters of Public Health to use & in doing that, remind myself that I’m also “Maya.”
6) You know when you’re asking yourself “Hmm…wonder if he’ll hold out long enough for me to run more errand before melting down?” If you have to ask, you know the answer is “no.”
7) If you ignore the above voice in your head, you WILL become That Mom with That Kid and Those People will hate you.
8 ) Sandra Boynton is God’s gift to parents. Reciting Moo Baa La La La will keep a child from crying during shots and buy you enough peace to get a haircut.
9) Dignity is overrated. A happy baby is much more important than what some stranger might think (say, the hairdresser cutting your hair while you repeat the words to Moo Baa La La La over and over).
10) There’s nothing sweeter than watching my husband wrestle with my son.

Moms (or dads), what things have you learned since becoming a parent?

My Monkey Baby

For today’s Mama Kat’s Writers’ Workshop, I’m writing on my strangest dream ever (prompt #2).

I am so glad that I thought to type out my first pregnancy dream the day after I had it. I had forgotten how crazy it was until I re-read it last night. I was about 2 months pregnant at the time and preparing for my 5 year high school reunion. So here goes:

It was late at night and I was standing in a parking lot, outside of a small car. I had just given birth in that car, at the same time as another Latina woman. She’d had quadruplet boys and I’d had a girl. I entered the car to bring my daughter home, but the other woman tried to tell me the baby was hers. She had even named the girl Attila.

So, this baby girl was huge…like at least 10 lbs huge. The weird thing? I’d given birth at 4 months. All I could think was “darn, I never even got to show!”

Somehow I get my daughter from this other woman and her quadruplets, and my baby and I are just walking around. She is the PERFECT baby. She was very smiley and quiet. However, she was totally naked, just having been birthed and all, and we had no clothes for her. Mark bought her some bright yellow diapers.

Then, I decided to take Attila to my high school reunion. As I was showing her to various classmates, I noticed she was growing more and more hair.

She turned into a Pygmy Marmoset!!! An evil one! One who jumped out of my arms and bit my classmates on the head!

from http://www.aqua.org/animals_ pygmymarmoset.html

And I was like “CRAP! What am I going to do with a Marmoset baby?!?! Is her tail going to shrink? Will her fangs go away?”

My mother told me “that’s what happens to premature babies,” and that I couldn’t breastfeed anymore or she’d bite me.

What was YOUR strangest dream?

Snapshot

Today I’m writing on prompt #2 for Mama Kat’s Writer’s Workshop: If you could have given yourself a snapshot 5 years ago of what your life is like now, what would the picture be of and how do you think you would have felt about it?

I thought about this for a while and finally chose this picture, which I took a couple of nights ago. Menininho is going to town on some beef and beans, totally grossing out my mom and Mark, and cracking me up.

Five years ago I wasn’t sure I’d ever have a biological baby. I desperately wanted to experience pregnancy (you know, some day after I was married and all that; not as a sophomore at college) and it was just too early to tell if that would be able to happen for me. I worried about it a lot, increasingly so as the years went by…right up until I was able to hold Menininho for the first time, when he was REAL.

So, it would have alleviated a lot of anxiety to be able to see this snapshot and know that things would turn out ok, that I’d have a spunky, independent little boy with a stubborn streak as long as I am tall.

Menininho’s learning so much now it blows my mind. His new thing is “reading” books. He’ll sit in the book corner we’ve constructed for him (Mark installed a small bookshelf next to the kitchen table, full of board books) and just open and close books forever. Today he came when my mother called him, and tonight he tried to crawl out the door after Mark and I when we left to see a movie. Then he cried when he realized he wasn’t coming with us. He also knows what will get him into trouble. For instance, he’ll sneak over to grab the TV remote and then try to crawl away fast as soon as he’s caught. I can’t believe how quickly my little baby is growing up, and I can’t wait to see what happens five years from now!

2010 Resolutions

I was delighted to see that I could kill two birds with one stone this week by blogging about my New Year’s Resolutions, which also just happens to be Mama Kat’s Writers’ Workshop prompt #5. I hope you all will keep me accountable on these!!!

1) I resolve to exercise 3 days a week. Now that my medicine seems to be helping, my only excuse for not hitting the exercise bike/treadmill/going for a brisk walk is that it’s way more fun to catch up on Heroes episodes online. But now, I’ve got PhD in Parenting and Lactating Girl keeping me honest. If you want to join the Twitter support group, just use the hashtag #mamafit!
2) I resolve to cook more often. Mark & I have been so busy recently that we’ve been making quick and easy dinners. I really want to experiment with gluten free cooking (I’ve been finding some GREAT websites!) and have more formal, sit-down dinners.
3) I resolve to try to work on blog posts ahead of time. Well actually, this is probably a lie. I know I pay for it the next morning, but I just can’t seem to write unless it’s at least 11:30 PM the night before I want to post. Case in point: I tried to start this post Tuesday late afternoon. It’s now close to 1 in the morning on Thursday.
4) Oh, and this one will make my dear husband very happy. In 2010, I resolve to try to clean out and organize my email inbox. Currently I have 6,452 messages. Mark insists this is in no way, shape, or form ok. Neither is my cluttered desktop full of shortcuts and folders and random documents. So honey, this is for you!

What are some of your resolutions? Do you follow through with them? Even bother to make any to begin with?

My Life Motto

Today is Thursday, which means I’m writing with Mama Kat’s Writers’ Workshop. I’m responding to prompt #2: What is one of your life mottos?

I’ve thought about it for the past couple of days, and I’d have to say that my motto is “Live your best life.” What does this mean?

1) Don’t compare your life to anyone else’s. Don’t compare your abilities to anyone else’s. We’re all different and it’s a waste of precious time to wish anything else.
2) Take advantage of any opportunity that comes your way. This might mean taking risks, but risks often mean a payoff down the road.
3) Look for lessons learned and the silver lining. Bad stuff happens; that’s life. Don’t waste too much time being sad. Instead, see what you can do to turn the negative positive.

I learned early on, when my best friend died at 13, that life isn’t fair and it isn’t always long. I believe that having Marfan has pushed me into living my best life. I gained an urgency of sorts to do everything that I can as soon as possible because (not to be overly dark, but…) no one is guaranteed to have tomorrow and I don’t know how long my joints will hold out. To that end, by 24, I’ve been able to earn 2 degrees, travel to 2 countries, hold a variety of jobs, get married, and have a baby. I’m slowing down some now, really relishing motherhood. Most days I feel like I’m living my best life. It’s not perfect, it’s not always happy, but it’s ME.

How do you live your best life?

What are your mottos?

The Best Christmas

It’s Thursday, so that means time for Mama Kat’s Writers’ Workshop! Today I’m responding to prompt #4: Describe how you would celebrate the holidays if it was totally up to you and money was not a factor.

I’m having some terrible writer’s block today and I blame it on all the righteous anger and frustration I poured into yesterday’s post. So, after spending hours last night writing, I went to bed with nothing. I’ve decided to alter the prompt a little bit and instead write about my favorite Christmas.

I’ve celebrated Christmas a lot of different ways. As a child, my parents held big parties on Christmas Eve. I’d help my mother bake pies and after the dinner, all the children would act out the nativity story. Once the guests left my brother, sister, and I would be allowed to open our gift of Christmas pajamas. Christmas morning brought presents and a breakfast of cinnamon roles and orange juice.

One year in college, I spent Christmas in Brasil. There was a blizzard and ice storm back home – power was out for days – but I got to lay out on the beach. I met my Mom’s extended family for the first time, toured the state of Sao Paulo, and ate the best food in the entire world.

The Christmas after Dad died, we had a family of 7 living with us for the holiday. I didn’t feel much like celebrating but the younger kids still managed to infuse our house with the Christmas spirit, and our small town rallied around my family to make Christmas special (this is perhaps a post for another day).

Last year I had a lovely Christmas with my in-laws. I got to experience a traditional Italian Christmas Eve dinner of fried fish (and pizza) and take part in all the traditions my husband grew up with. I loved it!

But I think my very favorite Christmas was the first one that Mark and I spent together. We were grad students, married 6 months, and finally living together (after the wedding he’d had to stay in Cleveland to finish his Masters, and I’d moved 3 hours away to start my program). I didn’t expect to do much, but Mark insisted that we buy a Christmas tree and he dragged it up all 3 flights of stairs to get it into our living room/kitchen. I made some ornaments, including the ugliest stocking holders you have EVER seen. ☺ Christmas day morning was very low-key, opened our gifts to each other, I made some cinnamon roles, and then I got started on dinner. We decided to host a set of young missionaries from our church for dinner and I went all out. I slow cooked a small roast and made cheesy potatoes, green beans, and a (slightly undercooked) cherry pie as sides. Mark had the brilliant idea of trying to cook artichokes, which ended up catching fire in the oven. Needless to say, we didn’t eat those and I haven’t let him near artichokes since.

I realized though that I think a simple holiday is the best. I’m looking forward to this Christmas, Menininho’s first, and starting traditions as a family.

I already bought his Christmas pajamas.

And please don’t forget to enter my giveaway! Tomorrow is the last day!

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?