Comments with the "m" word

I didn't think it would happen so soon. Both times it took me completely by surprise, as I suppose it always will. Neither was directed towards Belalu, and so were conversations I happened to overhear.  The first time was about two weeks ago. We were at the Y, and it was someone who occasionally watches Belalu in the daycare center there. We were going into the daycare center and she was holding the door open and commented to a guy she knew: "I figured basketball's going on with all you tall guys coming in- I feel like a midget!" Essie had to go the bathroom, so I hustled him in, thinking about how I could approach her about it. But when we came out of the bathroom, she was gone. I thought about it a lot for the next few days. I decided that it was important to talk to her about it, since she could potentially spend time with the kids and may use the word again. Or even use the word in front of her kids and they would think it's ok to use, too. Or what if one or both of the kids had heard and understood? What kind of example would I be setting for them if I just let it go without talking to her about it? So, I wished I had said something. Then, I saw her again a few days later (I don't usually see her so often) and thought about talking to her then, but just didn't. I chickened out.

The second time was last night. E and I went to his first play. It was on campus, and we had a great time. As we were leaving, we passed the student who has dwarfism (I'm guessing it's acon, but I don't actually know), and stopped to talk to her about the show. Then we went further down the hall and E got fascinated with an antibacterial soap dispenser. The hall was pretty much empty, and as I was standing there with him, a group of three guys appeared and one said in a a low voice to the other two, "did you see that midget?" His friend said, "yeah, she's a theater major." They were speaking amongst themselves, she was already gone, but the hall was so quiet I heard them clearly. But again, since it was not a comment I was "supposed" to hear, I didn't say anything. However, my mood immediately plummeted. I was sad the rest of the night. Sad for what I heard them saying about her, and really disappointed at myself for not saying anything.

I'm not a confrontational person. I don't usually talk to people I don't know or intentionally draw attention to myself. If I had been part of the conversation in either case, I would have spoken up immediately. And after the fact, I know I should have said something even though I wasn't part of the conversation, but in the moment I just couldn't get myself to do it. It took me too long to get over the shock of the comment and then formulate how to respond, and by then the moment had passed. In the case of the first comment, though, I actually got a second chance, and I still didn't do anything. I feel like I have let my children down. I'm not setting a good example, and I'm not being Belalu's advocate. I've been unexpectedly thrown into a role that challenges me and my sense of self. Clearly, I have a lot of growing to do.

Happy December!!

Here's to a new month! It's been a really difficult fall in terms of work and lack of sleep, but December has started off well. We've got a week of classes left before finals and Belalu has only woken up once the past two nights after a two-month jag of waking-every-hour. We've got some travel coming up and vacation is always a welcome respite, so I've got a good feeling about the end of 2012. In spite of all the challenges, I've been feeling so grateful lately. My kids are amazing. They are just pure joy and love. Here are some pics from the past week or so as we play around the house. Many are blurry or use indoor flash, which I don't like the look of, so I need to work on capturing these moving targets better, but hopefully you get the gist.

Yes, indeed. I'm one lucky mama. Here's to a merry and joyful December for your family as well!!!

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.”

Happy 1st Birthday, Belalu

On the day she was born

We made it. A rocky, sweet, anxious, joyful, frustrating wouldn't-change-it-for-anything year. Belalu  has made it interesting from the beginning. (Though that's another story for a different day).

One year old!

I have so much admiration for my baby girl. She is a force to be reckoned with, and even though that often makes things harder or more frustrating for her mama, at the same time I'm wanting to pull my hair out, I'm in awe of her tenacity. She knows what she wants, and she will not be deterred from getting it. It's this strength of hers that helped me take her diagnosis in stride when we first found out. I wasn't worried for her, because I knew she would be fine. Short stature will not prevent her from doing whatever it is she wants.

She has such a charming personality. Ah, if only I had half her ability to engage people. Almost from the start she would engage people in eye contact. It was intriguing. This tiny little thing would look at you and establish a connection with you. It was not the flirty make-you-drool-from-cuteness baby look. It was a direct, acknowledging-you-as-another-person look. And she still does this everywhere we go. We cannot be in public without Belalu turning the heads of everyone and leaving them all smiling. (I seriously wish I had this ability). This girl has a presence.

I love that she is different from everyone else. I am proud that I have a daughter who has been challenging my expectations from the first moment of her existence. She is an incredible person, and she's mine.

Here's to another year of discovery and learning for us both, my love!

This Journey of Motherhood

Machu Pichu, Peru 2007

It's commonly said, usually with negative implications, that motherhood changes your identity. I strongly believed this before I had my son, and it was one of the reasons that I wanted to wait until I was 30 before becoming a parent. I figured that I would live my life in my 20s, traveling and finding out who I was, earn my Ph.D. and then settle down to parenthood and promptly lose that self that I had spent so long finding/establishing. I waved out my youth by taking an amazing 40-day trip through four South American countries with a great group of college kids, and then stoically faced what I perceived to be the inevitable decline into middle-age and becoming no longer me, but rather just "_________'s mom".

Of course, I quickly learned that motherhood did not take away who I am. Rather, it enriched who I was, as any significant love will do. I still have the same interests, which I can now share with my children, and it didn't even stop us from traveling. Before he was two years old, Essie had been as far as the Portlands on both coasts and down to Kansas, as well as Puerto Rico, Spain, and Argentina. Motherhood clearly did not slow me down after all.

El desierto de Atacama, Bolivia 2007

Three months pregnant with Belalu in Puerto Rico 2011

When Belalu was born and spent the first 10 days in the NICU, it all felt so surreal. Neither of us have had significant health problems in our family, the pregnancy went fine... we just kept wondering how we ended up there. And as we've spent the past 9 months trying to figure out what is wrong with her, if there's anything wrong with her and are now facing the likelihood that she has dwarfism, I have once again had my perception of who I am challenged.

Before, I imagined that parents of special needs children were somehow more saintly and more patient than the rest of us. I am by no means either of these things. And yet, here we are. On a journey we never expected to take.  Emily Perl Kingsley wrote a wonderful metaphor that describes well the experience of coming to accept your role as a parent of a special needs child, called  Welcome to Holland.

I am grateful to both of my children for helping me become a more wise, loving, tolerant, and patient person. I've still got a long way to go, but motherhood is shaping me into a better person than I ever could have been without them.

Amsterdam, Holland 2006: One of my favorite cities I've visited