Book Review: Little People: Learning to See the World Through My Daughter's Eyes

I've been slowly making my way through this book since last summer. I've really enjoyed it, but it is so close to home I've found myself only being able to read it while in a pensive mood already. It brings up a lot of questions and thoughts that I don't always want to think about right before falling asleep, which is usually when I have time to read for fun.

Dan Kennedy is the father of a girl with achondroplasia. I really appreciate and relate to his thought process as he searches to find meaning in the diagnosis and grapples with where his daughter will fit into society. It was affirming to read someone's perspective with whom I share a lot of the same conclusions, if not a bit unnerving to read about someone going through a similar thought process I was in the middle of undertaking myself.

That was also the most unsatisfying part for me about the book. The parts where he talks about his struggle to understand what Becky's diagnosis will mean for her was almost too familiar. His questions then are my questions now. And of course, since it was written in 2003 and she was on the verge of adolescence, there are no answers. I finished it and wanted a sequel.

I realize my questions about Belalu's interactions with the world will only be answered with time. I also realize that Essie is also likely to have difficulties at some point- I think most people do. (At least in our culture it seems to be a common part of growing up.) But I only find myself worrying about her. What if.... what if.... what if... you can drive yourself crazy with those "what if"s. And then I see her determination, her intelligence, her love of people, and I find myself thinking "This girl is going to be teaching me a whole lot about life and how to take on challenges." Because I really think that's what she's going to do. And I know she's going to be fine, rough patches and all.

I've got two more books regarding dwarfism on my reading list for this summer. This one is next. Anyone want to read it with me and have a virtual book club?

Dan Savage and the It Gets Better Project

Last week we had the opportunity to hear Dan Savage speak about his It Gets Better Project. He told us the project came about as a reaction to the increased suicide rates of LGBT teens. He wanted a way to connect with LGBT youth, to tell them that life gets better after high school, but knew he would never be invited to speak to them in a public forum. The project features people uploading videos of themselves telling their stories to give hope to teens who may be bullied at school and/or at home.

The It Gets Better Project is one example of how the Internet can provide a powerful service. It's a way for people to connect with others who understand them, people who they would not have the chance to meet and talk with in person at a time when they need it most. I can relate to this need for connection- the first thing I did when I found out Belalu's diagnosis was search the Internet- not for medical info, but rather for personal blogs. I wanted to connect to others who could give me some insight to what this diagnosis would mean for our family. That compulsion was also immediately followed by my desire to join in the voices sharing their experiences. Hence, this blog.

I wish there was a similar project for us, the parents of a girl with hypo. I wish we could go to a website and see videos of LP people telling us about their experiences growing up, overcoming challenges, finding a job they love, starting a family ... That web page doesn't exist, but blogs do, and we can attend LPA events and meet people first-hand who can share their knowledge with us, so we can make sure Belalu finds a life of fulfillment, in whatever form that takes for her.

A couple of things that Dan said last week really stood out for me. Obviously, I have no way of knowing now what Belalu's sexual orientation will be, but I couldn't help parallel a lot of what he said about these marginalized teens to her own possible experiences as someone who will stand out as different and could also be the victim of bullying. First, he said that a lot of kids who are bullied at school go home to parents who are like them- racially, linguistically, etc- and can therefore sympathize with their son or daughter because they have similar experiences. We will not be able to relate to our daughter in this way. We will love her and support her, but we will not have had the same experience growing up as a little person that she will. Which is why I want to make sure that she gets to know other little people and has a network of support to turn to if she needs it.

The other thing that I took away from the talk that directly relates to Belalu is when a student asked Dan if he had any advice for LGBT activists. His response was to always have a sense of humor and to not assume that others are the enemy. I have not had to confront anyone yet about Belalu's condition. She is young enough that it is still not patently obvious. However, I know that we will have many incidences in the coming years where I will have to answer or respond to questions and comments- some of them misguided if not downright ignorant and hurtful. And I will need to model behavior for my children. And right now I have no idea what I'll do or say, and I imagine there will be times when it is so sudden, so unexpected, that it will take me aback and even a stock phrase won't come to me. And humor will not be the appropriate response. But equanimity always is. I write this knowing that equanimity is not my strong suit. Neither is grace or eloquence. But I have time to cultivate them both.

If anyone has any advice to give about how to handle comments, stares, etc. I would greatly appreciate it.

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.

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. 

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!

More Thoughts on "Disability"

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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.

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? 

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.

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