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Sunday, September 30, 2012

Happy October!

September went out with a bang. It was quite overwhelming for me- I'm more than happy with just one social event a week, but we have been out and about since Thursday.

Thursday we went to hear Dan Savage speak about his It Gets Better Project. It was a funny, educational, heart breaking talk. I'll write more about it in my next post.

Friday we had dinner with some new and old friends. It was so nice to be at the end of September and still dining outside under the stars. Essie had more than his share of cookies, though, and even though he got sick the next morning, he didn't appear to feel sick at all. We were supposed to go to a bowling birthday party Sat afternoon, but had to cancel because I didn't want to take the chance that it was the flu and get everyone else sick, too.

Saturday, after stocking up on this week's veggies at the farmers' market, we took the boat out to a sandbar on the river. There was already a houseboat there with a bunch of guys hanging out and a couple of other people by a canoe when we arrived, but within five minutes of our pulling up to the beach, a dozen or so canoes and kayaks also pulled up, and suddenly there was a party- bluegrass music and all. They stayed for a couple of hours and then left us with the silence of the water once again. It was an unexpected, but welcome addition to the afternoon with friends.

Today we had a birthday party at a local park for Essie and Belalu's friend who turned 2. Belalu had received this sweet dress for her birthday last month from some friends of ours, and I was so happy the day was warm enough for her to wear it. I think it'll still fit her in the spring, but just in case...

It was such a great weekend. The weather was gorgeous, we were outside a ton, we got a lot of friends and family time, and I somehow still feel caught up with work and ready to start a new week. Hope your weekend was also wonderful!

Friday, September 28, 2012

Regarding the Word "Dwarf"

The Fundación Alpe site has so many great resources in Spanish about achondroplasia. It has four main categories: Social, Médica, Educativa, y Voces (social, medical, educational, and voices). The description for this last category reads: "To be heard and to listen with attention to others, to those that have lived and thought about subjects that are important to us. Communication is the path to attempting to give some sense to the infinity of experiences in which we live. Here, expressions of subjectivity, perspectives of the world." 
I have only begun to explore all the resources available on this site, but one of the first things that I read really stood out for me as a mother trying to determine what a diagnosis of hypochondroplasia will mean for my daughter's sense of self and her interactions with the world. The original and complete essay is here. It's called "Sobre la palabra" by Margarita Guinovart, who has since passed away. The first part talks about the word "dwarf," according to the dictionary definition and the portrayal of them in Snow White. This is my translation of the last part of Margarita's essay, and I agree with her completely:

“I don’t expect the general population to know every growth restriction by its specific name or to be in-the-know regarding all the health care aspects and other facets related to each case, that would be crazy. I have a great curiosity for almost everything and, logically, I don’t know many illnesses, genetic mutations and deformities that drive many families crazy with worry. We can’t know everything.

My family and my closest friends are familiar with and know very well a large quantity of information of this sort. We are all very familiar with the word “achondroplasia,” but I admit that it is difficult to grasp. When we have to talk to someone outside of this “world,” of course we never say that Marina has achondroplasia. She is, simply, a dwarf. When someone requests more information, that’s the time to explain, to teach, and to bore, if necessary. But not everyone is willing, and we can’t expect them to be.

Perhaps I am excessively conformist, but it’s enough for me that people in general, the people that we pass by on the street each day, don’t get alarmed when they see that Marina is a dwarf. As pretty as any other girl her age, as smart as the others, as capable of becoming a marvelous adult human as any one else, although she’s 'tiny for her species' or 'of extraordinary smallness.'

What I want for my daughter is not that no one calls her 'dwarf,' but rather that this is only a description, like 'blonde' or 'big girl.' But to judge her in her totality, as a person, rather than only for her appearance… This I am ready to demand. I am ready to fight like a she-wolf for that. I’ll do it heart and soul for Marina, who is a dwarf, and for the “blonde” and for the “big girl.”


Tuesday, September 25, 2012

Good-Bye Summer! Vigo

Last pictures from Spain.
Essie discovered bounce houses and bouncy slides this summer. He never was fully convinced, though. He's not a daredevil, this one. I love that he's cautious but not fearful.
Foam party for the kids- they really know how to party in Spain!
My gorgeous bathing beauty/ water bunny. This girl is going to be using lots of sunscreen in her life- I have a feeling she'll be at the beach/pool every chance she gets.

 That smile melts my heart...

 I miss living by the ocean.
Little bugger figured out how to undo her stroller straps and took to standing up in the stroller all summer. Well, we know who got all the daredevil genes.
 Gorgeous port of Vigo
 Suddenly these guys appeared
 Dancing in the street: traditional Galician music, dancing, costumes

 Good-bye Vigo. Adiós España. ¡Hasta el próximo verano!

Good-bye Summer! Aldea II

The aldea celebrates its patron saint day the same weekend every year, so all the brothers and sisters and their kids, and now their kids' kids come together there to catch up and celebrate family.










Sunday, September 23, 2012

Good-bye Summer! La aldea I

As I gladly welcome in fall (even though I know that means winter is close behind), it seems appropriate that I finally got around to downloading our final summer pictures from Spain. You may recall I was gone for a week or so from here as we went to the family village in the Galician countryside. This is the town where JC's father spent his childhood and all his extended family continues to gather the first weekend of every August under the amused, watchful eye of the grand matriarch, JC's grandmother and Juju, Essie, and Belalu's great-grandmother. Apparently over eighty years of farm life and raising 10 children does a body and soul good.



















Saturday, September 22, 2012

We Have Walking!!

A couple of weeks ago, Belalu took her first steps. It was to get an ice cream drink of Essie's. (hmmm, food motivated much? ;) After that first surprise (even for herself), here and there she would get up and take a step or two and then sit back on her butt. She was content to do that, adding another step from day to day. But suddenly, last weekend our sweet little restless one decided that she liked the vertical view and has been working hard to get around walking. She's still very slow and unsteady, but her determination will prevail soon enough, and then I won't be able to catch up. I have a feeling this will be a recurring theme with this one.




I'm hoping to shorten the silences here. This semester has been very overwhelming for me and I'm up most nights until 1 am trying to get classes prepared for the next day. I'm working on getting ahead so I can have some quiet time for myself most nights instead of doing work.

Thursday, September 13, 2012

Soccer

My little boy started soccer this week. It's a 6-week program for pre-schoolers, so I don't know if they'll ever do a scrimmage. They'll probably just work on ball handling and following directions. Still, I cannot believe he's old enough for something like this. 

It was so fun to see him out there, sometimes following directions, many times doing his own thing, like humming a song and watching the geese fly overhead. He was so excited to be playing "fútbol" like his Papi and Juju.

He doesn't get as much attention on this blog as his sis, but I have to tell you: I adore this boy. He is the love of my life and makes every day more joyful. He's a thoughtful old soul who loves to do puzzles and "read" his books.  I cannot go a single day without a hug from him. I am just so grateful to be his mom and to get to watch him grow. 



Monday, September 10, 2012

Baby Love

Hard to believe Belalu has been with us for over a year now. Essie has been such a sweet, loving brother to her from the beginning. I love these pics of them together from her first few months. And I can't believe what a baby face he has in this first one!


He sat down and asked us to put her on his lap- just because :)