My Helper

I have a helper that loves to participate in chores, like unloading the dishwasher, wiping up spills, mopping and vacuuming the floor, watering the plants, and walking our Boston Terrier, Mobi.

Have a great week!

Thoughts a Year In

We are now over a year in from the diagnosis that changed our lives. In many aspects, life is exactly the same as it would have been if Belalu didn't have hypochondroplasia. Nevertheless, it's always in the back of my mind, but just as one facet of the many that make up who she is and how she'll face the world.

I am not afraid of different. I love that my daughter is different, and hope that my son will be, too, in his own way. I do not wish for either of them to have "an easy life." That does not mean I want their life to be hard, but I won't wish away the difficult moments. Easy does not make strong. Easy does not invoke contemplation and growth. Easy does not stir us to respond to challenges that compel us to shape our values and define who we are.

I cannot anticipate the challenges either of my children will face. I just try to prepare them to be morally and emotionally strong, compassionate and respectful to themselves and others, and to have integrity. To search for their passion and to value their place in the world. With these tools, I hope they will be able to face whatever challenges arise, and they will be better people for it.

Ready for Spring!

I came home from work one day a couple of weeks ago  to find E had dressed himself to play outside.  The ubiquitous ties have since been replaced with a Superman cape.

Although all this snow is now gone, it's been below 40 degrees F most of the month. This weekend is promising to be gorgeous, and everyone at this point just really needs that to happen.

We're finishing out the semester, so I've not had a lot of free time or energy, but there is a light at the end of the tunnel. Though J is gearing up for a trip to Spain soon, and I'll be teaching a May-term course, so the excitement will continue for a little while longer, I suppose, albeit in a different way.

My house plans have not been neglected, however. I have been doing the best I can to keep up the daily maintenance and have been relentlessly decluttering. Last week I gave E's room a thorough cleaning, and it just feels so good to have nothing extraneous in there. In addition, there are three garbage bags of clothes by the front door to donate tomorrow and several boxes more ready to go to the consignment shop on Friday.

This was my hat when I was a baby. I love that Belalu wants to wear it.

I've been feeling stressed and overwhelmed with work stuff, and clutter just adds to my stress, but so does the idea of having to organize it and get rid of it. My personality doesn't really know what it wants: on the one hand, I hate clutter and stuff just laying around, but on the other, I am very sentimental and don't want to get rid of anything anyone ever gave me. All my work this week has made me I feel freer, and I really want to keep it up. When I have time to start on some bigger house projects this summer, I'll be more inspired and motivated to do them with a house purged of unnecessary stuff.

When I step outside and see all the work my yard needs, though, panic starts to creep back in. And that's when I am grateful for the winter-like spring we're having. I'm just not ready to go there yet, though I will be after next week. We were going to start seeds inside this year, but never got around to it for various reasons, and I'm not letting myself worry about it. All my house projects and plans are to improve my quality of life, not bring more stress and worry to it, so I tell myself this when I start to feel bad about not getting something like that done. There's always next year. Thankfully, we have a several great sources for garden plants in the area, and we'll just go that route this year. I am very excited for our Farmer's Market Saturdays to resume.
Dwarf arrived in the mail last week, though I've been finishing up next month's book club book first. I couldn't resist starting it, however. And I couldn't stop crying while I read it. I think I've read two or three chapters so far, and I couldn't.stop.crying. So, guess I won't be reading this book anywhere but home.

I have some updates on Belalu's latest Dr. appts, but I'll save that for another post very soon. (Hard to believe my baby's 20 months old!)

Hope your spring where you are is bringing you lots of sunshine and warmth.

Playing in the Snow

Honestly, I'm not a weather person; I don't like extreme heat or cold. However, I believe that it's important for my kids to be comfortable and familiar with nature, so I try to get them outside every day I can. This has been really hard for me to motivate myself to do in the cold of winter, but with lots snow just waiting for us to play in, I've had to bundle us all up and get us out there. Belalu is still not quite sure she likes this cold, white stuff, but I'll bet next year will be a different story.

A Full Pantry

With all the traveling we did this past month, my pantry was starting to get a bit too bare for my liking. I prefer to have lots of things on hand to be able to whip up a batch of cookies or a yummy soup when the mood strikes and I'm blessed by the baby nap gods. So, this week I got to work re-stocking my pantry. Nigella Lawson, whose classic, How to Eat, has been my breakfast companion this past week or so, talks about her "domestic goddess" moments. You know, when you've spent the evening or weekend puttering around the kitchen filling the fridge with delicious, nutritious meals for your family.

Yesterday was my "domestic goddess" moment. Belalu took an hour and a half nap, and I took advantage of the freedom to cook up a few days' worth of oatmeal (I like the steel cut oats, but they have a long cooking time for a busy week day morning); roasted beets and made a shallot maple dressing for dinner's salad (from Tyler Florence's Family Meal); and made a cuban black bean soup (from Nigella's book). The house was full of warm, delicious smells, and even though I didn't get home for dinner until 6:30, I had a yummy home-cooked meal ready for me. Juan cooked up the pork for him and the kids earlier in the evening.

I have lots more domestic goddess moments planned for my kitchen over the weekend. Breads, an Indian meal from a new Christmas cookbook, a supply of chai tea, and breakfast/snack cake. We'll see if time and the kiddos cooperate. That last one is likely to involve their help, like we did last week.

And as a "Year of the House" update, I've posted my cookbook cabinet. I got a few new books for Christmas and my cabinet was already bursting at the seams. I moved a bunch of books I didn't use at all in the past year or so down to the basement and if I don't miss them this winter, I'll donate them during spring cleaning. I've already found myself "rediscovering" some books, like Nigella's, which I'm reading like a book- she has lots of great text in there beyond the recipes.

Christmas

As I downloaded my Christmas photos, I realized that all I took pictures of was what we ate. We had Skype on most of the day with various family members out east, so I just didn't take many pictures of the kids, and most of the ones I did take came out blurry.

 

We got home the afternoon of Christmas Eve, so I wasn't sure I would have the energy to undertake our now-traditional "Paella Navideña", or Christmas Paella, as we call it. But after putting Belalu to bed at 6, I rallied and did throw one together. I still have some tweaking to do (mastering the paella is a tricky skill to acquire, especially for a gringa who didn't grow up eating them), but it was my best one yet.

Christmas morning E and J slept in until almost 10 (!) due to travel fatigue, so I had time to make some blueberry muffins, a tradition my mom started when my sis and I were kids.

The rest of the day we just snacked on veggies and dip, muffins, and nuts. Then went to our neighbor's house for dinner- I brought cranberry sauce, cardamom bread, and a bottle of coquito, Puerto Rico's version of egg nog.

The recipe I made filled the three bottles. We've kept the other two in the fridge and have a bit in the evenings- it's coconut-y, creamy, and cinnamon-y with a wallop of rum that can put me right to sleep. It's definitely a new tradition I'll keep up. To have it in the fridge just feels festive. We had some friends stop by unexpectedly last night, and it was great to be able to offer them a glass as we chatted.

Santa brought Belalu a Radio Flyer Tiny Trike. Her PT had suggested we get her a riding toy, and E never had one, so we hoped this would be small enough for her legs, and she can indeed push herself along on her tip toes. I already thought she was mobile enough- now on wheels, there's no stopping this girl (well, until she gets to a wall and needs help backing up ;)

Visit with Santa

 Another advent calendar event: Visit with Santa

Waiting in line.... veeeery excited!!!

He's taken to wearing this tie a lot lately. With this shirt it looks like he's sporting two!

This is as close as Belalu was interested in getting

My babes

Gingerbread House

 One of the Advent Calendar activities this week was to build a gingerbread house. E and I had a lot of fun putting it together. 

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!!!

More on Dr. Pauli's Visit

I forgot to talk about the whole last part of the appointment with Dr. Pauli, so in my next post I'll talk about our gathering post-appointment. (I don't dare say tomorrow, since the way my week's been, it might be longer than that)

Honestly, I didn't go into his office with a lot of questions. I figured he'd know better than us what we needed to know. Basically, I wanted to know Belalu is going to be ok health-wise and I was curious if he could give us an idea of her adult height, since the range for hypo, depending on where you look, is about a foot difference. And we wanted to talk treatments and get his opinion on them.

In terms of her height, he said that right now she is actually still on the AH growth chart, which surprised us because no one else has found that to be true. So, she is way at the top of the acon chart. (There is no hypo-specific growth chart). If this is true, right now she is "tall" for having hypo, but since J and I are both exactly average for our sex, it is most likely that she will also be average for her condition- which I think would put her at about 4'6" at her full adult height. Dr. Pauli said that the best age for predicting adult height is age 2- until then we really have no way of knowing.

After talking to him, we both came away with the impression that she will not be disabled, either due to health conditions or her height. She will face some challenges adapting to a world made for taller people, but she will not be hindered from doing what she needs/wants to do.

This led us into talking about possible treatments. We have decided not to pursue growth hormone therapy. As her mother, I think she is perfect the way she is.  I won't actively encourage the limb-lengthening procedure, but if she decides that it is something she wants to do, I will support her decision. J is approaching things a bit differently. Whenever we talk to someone about her condition, he brings up limb lengthening, saying "if that's something she wants to do." He wants to keep her possibilities open and also I think it assures him in a way that she does have this option. I'm concerned that if we raise her telling her that she can do this in the future if she wants, that we are cultivating an environment in which it is implied that it is something that she should want to do. Of course, a lot of this depends on how we express this idea to her, and we still have some years to figure that out, but we'll be talking about it to her brother before then, and it will surely come up in conversations with others along the way. I want to make sure we're cognizant from the beginning about how we talk about her condition at home and to others.

We also recognize that our perspectives are shaped by our culture. A much higher percentage of little people in Europe decide to proceed with limb-lengthening surgery than in the U.S. (I don't have exact figures right now, though I'd like to find them in my *ehem* free time). Dr. Pauli mentioned the concept of "bella figura" in Italy, where one's exterior is believed to be a reflection of one's interior beauty. J says he thinks the difference between the perception of limb lengthening in the U.S. and in Europe is the difference between individuals adapting to society (Europe) vs society adapting to individuals (U.S.). I would be interested to know others' opinions on this. I have seen plenty of evidence of people in Spain working to make their society more open and accessible to all. I think in the majority of cases, the reasons behind the decision have to be more than just conforming to society, and are likely to be as varied as the people opting to do it.

Since each of us are approaching this subject from a different angle, we had different questions for Dr. Pauli. Recognizing that his answers were anecdotal and not scientific, J asked if anyone who had done the surgery regretted it, and he said no. When I asked if he had met anyone who had decided not to do the surgery or hadn't been given the opportunity to do it and wished they had, he said no. I then asked if he thought that the family culture and one's experience with LPA affected someone's perception of limb-lengthening, and he said he thought that it did. There are many cases, though, some that I know personally, where the parents didn't push the procedure, but the child wanted it.

The limb-lengthening procedure will only get better and less invasive in the coming years, so for now we're going to be aware of it and we'll see what Sabela thinks about it as she gets older.

Raking Leaves

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.

At the Orchard

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.