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Tuesday, July 31, 2012

More Thoughts on "Disability"

A fellow parent recently brought to my attention a 2003 article from the New York Times Magazine, "Unspeakable Conversations," written by Harriet McBryde Johnson. She was an attorney and disability rights activist with a neuromuscular disease who passed away in 2008. In this article she refutes the argument that parents should have the right to terminate the life of a newborn born with extreme disabilities. While most cases of achondroplasia and hypochondroplasia are not extreme (or even slight) disabilities, the availability of pre-natal testing suggests that parents who find out they are pregnant with a baby with a skeletal dysplasia might chose to terminate the pregnancy for fear of having a child who is different or may have health complications. Regarding a person's quality of life, this quote from McBryde Johnson struck me as especially reassuring.

"Are we 'worse off'? I don't think so. Not in any meaningful sense. There are too many variables. For those of us with congenital conditions, disability shapes all we are. Those disabled later in life adapt. We take constraints that no one would choose and build rich and satisfying lives within them. We enjoy pleasures other people enjoy, and pleasures peculiarly our own. We have something the world needs." (The emphasis is mine)

The family of Fundación Magar gave us a copy of the book, Hacia un nuevo horizonte, distributed by Fundación ALPE. You can download a .pdf copy from their main page. On one of the first pages, I found an interesting sentence, although I do not agree with the use of the word "disability" to describe achondroplasia: “There’s still a lot of work to do so that a disability doesn’t become a dramatic element for families when it shows up in one of their members…” (My awkward translation, sorry). What a novel, interesting idea that parents would consider their child's difference as much a variation of normal as the color of their skin, hair, or eyes. I think most AH parents of children with achon or hypo think that way after varying periods of time, but to hear the diagnosis without an initial feeling of shock probably happens to very few of us. Only when we perhaps adjust a previous image held of the child, learn more about something we never had to know before, talk to others, and get to know our child and his/her personality does the anxiety lessen, if not disappear altogether.

Monday, July 30, 2012

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? 

Sunday, July 29, 2012

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.

Friday, July 27, 2012

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

Thursday, July 26, 2012

Dressing in Spain

A mom fabulously dressed for the playground

I am having such fun people-watching here. People seem to enjoy getting dressed in Spain. Overall, they tend to dress up more than in the States- even when wearing jeans and a T, they somehow seem more pulled-together. Maybe everything is ironed, or a woman’s bag matches her shoes or just that the cut of the pants or shirt are more trendy, almost vanguard. I love watching people of all ages- the beautiful dresses that moms put their girls in to play on the playground, the older women perfectly coifed, the heels everyone somehow is able to wear in spite of the tiled sidewalks and steep, steep hills.

Whenever I arrive, I’m always taken aback or puzzled by some trend- mullets on young guys, pants with a super-baggy inseam and skinny legs on young girls… and yet, by the end of the month I find myself thinking: hmmmmm… could I pull that look off back home? (Almost always the answer is NO, especially as I get older), but it’s fun to check everyone out and enjoy the creativity.

One thing I really like is how babies are not limited to pastel shades of blue and pink. There are lots of options available for both sexes here, to the point that I’m sometimes surprised. The other day I was in the baby section of El Corte Inglés, a very popular department store all over the country, and a woman, holding up an outfit, asked the sales lady if it was for a boy or a girl. It was overalls with puffy legs in a deep pink with a white shirt that had embroidery and ruffles on the neck and wrist. I scoffed to myself; of course it was for a girl, but the sales lady and another woman standing nearby entered in debate. “It’s for a boy.” “No, it could be either.” The three finally decided that yes, the outfit could be for either a baby girl or a boy. It has also happened a few times that people have thought Belalu was a boy, even though she was wearing what would definitely be considered “girl” colors and styles in the US. The reason she had to be a boy? Her ears weren’t pierced.

I love these fun differences of cultural perceptions that remind me what I take to be a given, doesn't have to be. It's all in our perception of reality. It's one of the reasons I love to travel- to expand my views and to keep me open-minded.

Wednesday, July 25, 2012

Competitive Parenting

Image from here

Since I found out I was pregnant with Essie, I’ve been aware of the ridiculous phenomenon of competitive parenting. I thought it might just be a US thing, but a recent conversation with some moms here in Spain revealed that not to be the case.

As with most areas of life, there are so many options. Breastfeeding or not (and how long); daycare, nannies, stay-at-home parenting; aspirin yay-or-nay, vaccines, ditto; screen time- what and how long; plastic vs wooden toys; what kind of diapers, what kind of food, where your kids sleep and how long…. The list goes on and on and on. And for every choice, there is a team of experts to support why one way is better than the others.

I feel fortunate that for the most part, my actual exposure to competitive parenting has been fairly limited, and I try my best to keep it that way. When I do come across a mom who wants to engage in parenting competitiveness, I remind myself that her judgments reflect on her insecurities, not my parenting.

I am so lucky to have so many amazing friendships with parents who are interested in sharing their experiences, fears, weaknesses, and of course, joys. I have been so lucky to find many friends that haven’t fallen into the competitive parenting trap.  Oftentimes, the only thing we would appear have in common is a shared concern for our children. Given the diversity of our backgrounds and experiences, even what we want for our children isn’t necessarily the same thing. Nevertheless, we listen, and we share- sympathy, advice, hope, experience- whatever we can in the particular circumstances. And that’s enough. I seek friendships that are based on respect. Respect for our differences, respect for our perspectives, respect for our individual experiences.

That’s why I’m so grateful for the LP parents I’m getting to know. I have found no judgment or competition, just support, love, and acceptance for our family. Competitive parenting may be thriving in some circles, but I’ll keep it out of mine.

An Afternoon by the Pool and Dinner under a Magnolia Tree

Sunday, July 22, 2012

Community II

I already talked a little about community here, but since then I've discovered a new one that has already made a big impact in our lives. The LP community extends throughout the world. Many countries have a national association. I've discovered here in Spain that rather than a national group, there are various, according to the region in which you live. I'm so glad that Belalu lives in a time when connecting with people who share her condition can be that easy.

The Internet provides lots of ways of connecting with people, too, from FB to blogs to the Web pages of the above-mentioned associations. I don't live in a big metropolitan area, however, within a week of Belalu's diagnosis, I had met another mother in town whose daughter has achondroplasia. And within a week of being here in Vigo, I'd connected with another family whose daughter has achondroplasia. Both times, the women were warm, welcoming and totally understanding about my interest in meeting with them- I didn't really have to explain much beyond "my daughter has hypochondroplasia." It's been the same on the Internet. I'm getting to know lots of amazing, wonderful families whose children also share a skeletal dysplasia. People I never would have had a chance to meet otherwise.

It is so nice to have so many personal experiences when the technical information we've been searching for isn't always available or easily accessible. Then again, sometimes it's not technical info we need, but just that personal connection with someone who's been there before us, or is going through something similar. I look forward to connecting more with LPA and our chapter when we get home, and hope to meet more families in person in the coming months.

In regards to Fundación Magar here in Vigo: The woman in charge of the group called a few days ago, and we're getting together this Wednesday. She has a daughter who is 13 years old with achondroplasia. We are looking forward to meeting a family here in Vigo and learning more about their association and their experiences here in Galicia.

El parque de Castrelos

Another playground. This one is located in the Parque Castrelos in the center of Vigo.
With Mami
With Tía Alicia


Saturday, July 21, 2012


Summer is the perfect excuse to consume lots and lots of ice cream.

Friday, July 20, 2012

Essie Gets His Hair Cut

Essie and JC got their hair cut with all the special treatment. She just sprayed his hair with water before cutting it, but when JC got his post-cut shampoo and scalp massage, E wanted one, too. He was very well-behaved throughout the whole experience, though the ubiquitous "chups" (pacifier) was plugged right in the whole time.

Thursday, July 19, 2012

Yummy Breakfast

Each morning we take turns going to get a coffee. JC reads the paper, I read a book in preparation for a new course I'm teaching in the fall on Puerto Rican culture and history. We both get a little time to ourselves before the day gets fully underway. Today I just had to order one of my favorite Spanish breakfasts: a grilled croissant. I love it with jam, which I haven't added yet in the pic. It is so decadent and heavenly. Another thing I love about breakfasts here is that when you order an orange juice, it's always freshly squeezed. At this place, one of my favorite bar/cafés in the neighborhood, they always give you a little glass of OJ with your coffee.

Tuesday, July 17, 2012