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.”

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.

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.

Back in the States

We're back in the States. Whew! It was a looong trip. Though not as long as the car ride home will be :)

It's nice to be back. The first thing I did was get an iced latte. Yes, after a full 24 hours without any sleep I needed the caffeine, but I'd really missed them in Spain. There are Starbucks in the bigger cities, but nothing like that in Vigo.

The schedule changes have been brutal. The kids keep getting up earlier and earlier- today it was 5:30 am. I'm really hoping that changes soon.

We're visiting with my folks for a little while more and then back home. I'd be more excited about that if it didn't mean I had to start working right away, too. But for now, I'll enjoy visiting my family. We have an early-birthday celebration to orchestrate and a visit to the Island of Sodor in the works. Should be a fun few days!

Vacationing on Vacation

We're headed to a tiny village in the country where JC's dad grew up with his 10 brothers and sisters. The first weekend of August, the whole family gets together from all over Spain to celebrate the town's patron saint day. I'm not sure of the Internet situation there, so I'll likely be gone for a few days. Enjoy the start of August!

Here and There

Encuentros: Some other thoughts from our meet-up Thursday…

What they mentioned about the older generations of little people they knew in Spain was very interesting. N’s mom said at first they had found a reluctance by the older generations with achondroplasia to participate in their foundation’s activities. However, they started getting calls from various groups that revealed the need for their help. For example, an architectural firm from the other side of the country called because they needed to alter a building to conform with new accessibility requirements, including accommodations for two workers with achondroplasia. The firm was calling to find out what these changes would be. N’s parents had no idea, since their daughter was still just a baby, and at that time there were no official guidelines anywhere.  So they needed the collaboration of older people to provide appropriate information. So, she said, their foundation has been working to incorporate people of various generations to meet their different needs.

One woman had shared with N’s mom that she had spent years in therapy trying to resolve the feelings that came about when her older siblings stopped taking her to the playground while continuing to bring her younger sister. They had explained, “We don’t want to take you, because when we go with you everyone stares at us.” She also told me that meet-ups they’ve had tend to be with parents of little people because the adult little people told her “We’re tired enough of people staring at us in public, why would we want to draw even more attention to ourselves by gathering together?”

I want to believe that these stories reflect growing up in a different Spain; that Spanish society today is more open to diversity than it was a generation or two ago. I know that the racial and cultural make-up is very different today than it was when I first lived here almost 15 years ago, and I would hope that this increased diversity is slowly changing cultural perceptions of difference and “the other”. If anything, the increased participation of parents of little people in groups, associations, and conferences seems to reflect a desire to situate their children within society rather than keep them hidden, as I’ve been told happened in the past. (I think of that woman whose siblings left her behind- why did her parents allow them to treat her like that?) Perhaps this effort will result in a generation of people who are proud to be part of a very special group and who are interested in guiding those younger than themselves and their families from their own experiences.

I’m basically thinking “out loud” here, and trying to sort out information as I come across it. I would love to hear your thoughts and reflections on these subjects. What am I getting wrong? What information am I missing? 

Encuentros: Vigo Meet-Up

Thursday afternoon we met the family who heads Fundación Magar here in Vigo. Their daughter, N, who is 13 years old, loved meeting Belalu and played with her pretty much the whole time. When Belalu was clearly ready for a nap, N rocked her in the stroller until she fell asleep.

As the kids played, the parents talked. We learned that they started the foundation when their daughter was just a baby, because when they searched the Internet for information about her condition and wanted to contact other families, they had a hard time finding relevant information. She said the primary aim of their foundation is to raise funds for research in achondroplasia, but that their web page also serves as a space for families to connect and keep up to date on conferences, reunions, and news regarding medical advances, etc. Regarding the social aspect, they know of about 15 families in this region of Spain (Galicia) whose children have a skeletal dyplasia, the majority with achon. They also said that almost all the young people with achondroplasia that they knew have chosen to undergo limb-lengthening surgery. N herself spent the past year lengthening her legs and just started on her arms. She told me it didn’t hurt at all, and her parents reiterated that the surgery was completely her idea. Her mom told me that they hadn’t planned to do it, but that N saw the results of one of her friends that did, and she wanted to do it, too.

We asked how it’s been for her socially, and they assured us that so far it has been very positive. They shared an anecdote about how when she was 5 years old, they realized she didn’t know how to button her shirt. Nevertheless, she always had her school shirt on correctly (in Spain all little kids wear a uniform at school - a type of over-shirt). The teacher watched her one morning and realized that she would put the shirt on, walk over to whichever friend was free at the moment, and that friend would button up her shirt for her. “She has a whole court of ladies-in-waiting ready to help her out,” laughed her mom. When we asked about strangers staring, they just dismissed that worry, too. “Oh, she doesn’t even notice anymore.” While I appreciate the positive perspective, I’m hesitant. After all, N was insistent on doing the limb-lengthening surgery. However, I didn't press the issue.

The families in Galicia usually get together for a day in the summer, and we just missed this year’s gathering, but we’ll be in touch for next year and they said they’ll try to match our schedule with theirs so we can meet more families.

N and her family were very open and welcoming, and we spent a nice afternoon with them. They assured us that the most important thing we can do for Belalu is to promote her self-esteem and confidence. N’s personality reminds me a lot of Belalu. I look forward to seeing them again next year and we’ll be in touch via email until then.

Here and There

• Gorgeous green summer landscapes
• Hydrangeas to-die-for everywhere
• An amazing book I can't put down
• History and the blue of the Atlantic around every corner
• A summer shawl in progress