Another beloved fall tradition for our family is raking leaves. I really enjoy doing it for the first few hours. I love the smell of the dirt and grass on the ground, the faint scent of decomposition from the leaves, their dry rustle as I walk on them and rake them into piles. I especially love hearing my raking echoed in that of my neighbors as we all work on preparing our houses and yards for those long dark days of winter when we'll barely nod to each other as we rush into the house as soon as possible to escape the cold.
This year, I recruited a couple of helpers.
When the leaves are collected, they are packed into the car and taken to a nearby farm, where they will become either compost or goat food.
My baby Belalu turns 14 months today. I just recently gushed about all her amazingness, so I'll spare you too much more gushing. But I have to tell you, she is just so much fun lately! She seems to be turning into quite the fashionista already. She'll spend a a long time insisting we put on different shoes and socks, then taking them off and giving us other ones to put on her. Her other favorite accessories, besides necklaces and bracelets, are scarves or cowls. It's getting chilly here, so I've been wearing lots of them myself, and she makes it clear she wants to wear one, too. She has appropriated her brother's cowl I knit him last year, and in this picture she's wearing one of my shawls around the house with jammies and slippers. (sorry for the blur, but this girl moves all. the. time.)
With all this interest in neckwear, I decided that she needed some of her own, so I immediately cast on for her a smaller version of the bandana cowl from The Purl Bee. Then I saw the scarf-bib on Adelaide's blog, and realized I could make up some cowls for her right away. They have snaps in the back, but she can also pull them over her head. Boy, oh boy, having a girl is fun :)
The other night we were at a social event for the kids' daycare and Belalu was walking around amongst the parents and kids. At the same time she took a little fall, a woman who didn't see her kind of tripped over her- it wasn't the woman's fault, and she didn't hurt Belalu at all, but later she felt the need to come up to me and apologize again. I told her not to worry, and then she asked me how old she was.
"Almost fourteen months."
"Oh. Poor thing! She's destined to have to look up at everyone, even other little kids."
I smiled and nodded, and then her daughter, who was about 7 or 8 added,
"It's so cute- she's so little and she walks!"
They were just being nice, I know, but they have no idea how right they were. The mom's words especially struck me as odd- I mean, why would you say destined to look up at everyone? Most kids will eventually grow to be the same height or taller than their peers.
Also, we've been getting a lot of "Oh, she's just like a little doll!" comments lately from strangers.
So, I'm still working out what this word means. In general, and for our family specifically. Thanks for bearing with me as I work this through out loud and in stages.
The Word Itself
As a person who until very recently had the luxury of not having to give the word too much thought, I always took the word "disability" to have negative connotations. Dis-ability means, literally, "lack of ability", or "lack of aptitude". In Spanish, the adjective "minusválido" literally means "less valid". It's hard not to see a value judgement in this word, so I believe a more preferred term is "discapacitado." Like the word disability, the prefix "dis" implies a lack; they suggest that something is missing. So, is part of the problem that I am negatively interpreting the term "disability'? But, how can I not? The negativity is inherent in the prefix itself "dis."
This summer I read a wonderful example turning this negativity on its head, which I talk about here.
And many people of short stature or parents of children with a form of
dwarfism will emphasize that they can do the same things as everyone
else, though they may have to do them a little differently. So, where
does disability come in? When they cannot do something? When they need
special medical care or require corrective surgeries?
Hypochondroplasia and Disability
Right now, Belalu does not have a disability. She is at or well beyond all her developmental milestones. She is not impeded in anyway by her hypo. In fact, we're always so surprised at her reach, given the length of her arms. She's constantly getting into things we thought were out of reach. The other night, she put her leg over the bathtub edge and got out herself! It seems that for now at least, flexibility and determination compensate for shorter limbs.
What is not clear to me, however, is how her condition will inform her physical negotiations of the world as she gets older. Why is there so much emphasis on the one hand about LPs being "just like everyone else" and yet on the other implications that short stature is or can be a disability? When I first heard about limb-lengthening, I thought it was a cosmetic procedure. However, many people say that it helps them get around easier in a world not built for them.
This summer I watched an old episode of Extreme Home Makeover, where they constructed a house for a family whose daughter has achondroplasia. At the beginning of the show, her mom talks about how their house is dangerous for her, the stairs are too steep and too many, the counters and the door handles are too high, she cannot do many things on her own because of the way the house is built. On the other hand, I watched an interview with the Johnsons, a family of dwarfs, and Barbara Walters, and they chose to not change anything about their furniture or their house, even though they were all little people. The parents said they would not raise their children to believe themselves disabled: "We don't have a 'woe-is-me' attitude" seemed to imply that people who consider themselves disabled do? But perhaps that was just the editing from the producers.
So, honestly, I don't know what to think. I still don't have a handle on what it is going to mean for Belalu that she has hypochondroplasia. Will she have difficulty negotiating day-to-day stuff because of her height or her bodily proportions? Will she need to have surgery (perhaps multiple ones)? Will she have a lot of pain at some point in her life? No one seems to be able to tell us that now. Like any parent, I want her to be able to do what she wants in life, and I want her to be happy with who she is. Her hypo is a part of her, but it does not define her.
We've been going to the same orchard for the past few years. It's become a fall tradition. Last year was Belalu's first visit.
This year, we went the first weekend it was open, at the end of August,
and it was too hot. It just didn't feel right- it needs to be cool, you
know, feel like fall, to be there. The good thing about going
this early, however, was that Juju was able to join us before heading
home for the season.
Then we went a couple of weeks ago when it was starting to feel like fall had arrived.
This weekend we were there for a birthday party and it was cold. Like, not even 40 degrees cold. I think it's the last trip for the year.
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.
Today Belalu had her one-year well visit. She's actually 13 1/2 months, but I called at the last minute for an appointment and we had to wait this long to get in. Here are the stats for the AH growth chart:
Weight: 19lbs, 11 oz or 8.93kg = 10th percentile
Height: 27" or 68.6 cm = under 3rd percentile
Head: 19" or 48 cm = over 97th percentile
As we already knew from our PT appointment, Belalu has blown past the 12 month milestones and has actually gotten most of the 15 month ones down alreay.
She's walking, waving and saying "bye-bye", says Mama and Papa, that, hola and hi, signs when she's all done, gives hugs and kisses, feeds herself, scribbles with a crayon, puts small objects and different shapes in their corresponding holes, stoops and recovers. She likes to drink from a cup, but gets most of it down the front of her. She understands "no" and "cacaplá" the sound we make with corresponding tongue out if she tries to eat something she shouldn't.
She loves to put on necklaces and bracelets, and then shakes her wrist or walks around patting her tummy and the beads. She'll point to pictures on the wall and say "that" so we'll talk about them with her- really she points at everything and does that, but we do it as a bedtime routine up the stairs and in her room with all the pictures along the way. She loves being outside, playing in sand and water and on the boat, even if it's parked in front of the house.
She is so communicative these days. She points at things and "talks" about them. The past few nights have been cooler, so she's been sleeping in footed jammies. When she wakes up in the morning, she'll start talking in her crib, and when I come in to get her, she's standing up, holding her foot up and pointing at it, "talking" - clearly showing me that her foot has gotten caught in her pajama leg and she wants it back in the foot part. She also looooves taking off her shoes and telling us to put them back on her feet.
She currently has three molars coming in (the first is already all up), but even so, she's been really sweet lately and a lot of fun to have around. She loves playing with her brother and gives him lots of kisses and hugs, along with her Cabbage Patch preemie who came with the name Bella Liv so my mom just had to get it for her. It's the perfect size for her to carry around, and sometimes I'll come in her room in the morning, and she'll be sitting and hugging her baby.
Whew! I didn't mean to go on and on. We're having so much fun with her and enjoying playing and spending time together. Now, if I could just get her to settle in the car so we could drive medium-to-long distances in peace, things would be near-perfect!
Got the official word that our insurance will cover a visit to Dr. Pauli at the end of the month! We are very excited about this, obviously. I have to say, for the record, we've had great experience with our health insurance. A nurse called me last week to see if I had any questions about her health, though when I told her Belalu's condition, she said she'd have to do some research and call me back :) Fair enough.
She then asked me if we needed financial help for travel for any of our visits. ??? Since when does insurance offer that service? Since they are all fairly close by, I said no, so I don't have more details on that.
She also told me they have a free service where in addition to a nurse I can be assigned someone who will help me sort out all the various bills and claims, since we are now working with four different clinic/hospitals.
I keep trying to figure out what the "catch" is in all this help, since you hear so many nightmare stories about insurance.