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Monday, June 25, 2012

Big Day

Today was our anniversary. We've been married six years. But that's not why it was a big day.

This morning I got to meet a woman here in town whose daughter has acondroplasia. She's almost eleven, so they are not going to be friends, but at least she and Belalu can know each other. And it means a lot to me to have another mother I can call and meet for coffee if I need guidance, support, or just a sympathetic ear.

The friend that introduced us did not know the woman well, but facilitated our meeting anyway, which was very sweet. She had asked me last week if I would be interested, and I said of course. A day later J was driving around town thinking "I just need a sign that Belalu is going to be ok," and saw this woman and her daughter walking down the street. He pulled the car over and introduced himself, explaining he had a daughter recently diagnosed with hypo. Luckily, my friend had already talked to her, so she wasn't completely weirded out by the random guy stopping his car on the street. It all seems so fortuitous. They have been here as long as we have, in our not-so-small-town, and yet we meet now. My friend said something today in this regard that really struck a chord with me about how people come into our lives when we need them to.

Yes

The other big event today is the call I got from the geneticist's office confirming the hypo diagnosis. I asked her assistant, the one who called me, about Belalu being referred to Dr. Pauli in Madison, and he said that he used to work with him and that he would check. He called back and said she could see him after we got back. Tomorrow I've got yoga and the sauna in the morning and my sweet friends are treating me to a pedicure in the afternoon.

I'm feeling a lot of gratitude today.

Sunday, June 24, 2012

Traveling with Kids: Planes


San Juan, Argentina
As we are gearing up for a three-day drive out East and will then be flying overseas, I've been thinking about all the tricks I know for traveling with little ones. This will all be new with Belalu, but as I mentioned before, Essie is already a well-seasoned traveler. Mara Kofoed, of A Blog About Love, just did a great Babble post on traveling with your spouse, and I love all of her advice. I would also add some advice I learned from another post of hers, which is SMILE. No matter how tired, how angry, how frustrated you are, smile. For the sake of everyone traveling with you, and for yourself. Smiling really does make you feel better. (The emotional/ patience part is what I need to work on most, so on this trip I'll be repeating the mantra "smile, smile, smile" to myself as my patience wanes and tiredness takes over).
Now, to the practicalities of moving those kiddos from place to place. The following are the best strategies I've picked up for traveling long distances with little children.


  • Keep in mind your child's schedule. The smaller they are, the more important this may be for everyone's well-being. If you can arrange flights and drive times to correspond as close as possible to nap/ sleep schedules, it should make it easier to get them to sleep and more peaceful for all.
  • Wear them out. E never really had a set schedule, so my strategy while traveling with him was to wear him out at the airport so he would collapse exhausted in my arms once we were seated on the plane. When he was really little, this involved people watching, showing him neat things, etc. As he got more mobile, I'd find an empty departure lounge and let him run and climb to his heart's content. Many airports have a children's play area, just ask at an Info desk or look online beforehand. Two of the best I've found are in Chicago and Madrid. 
Paseo de la Princesa, San Juan, Puerto Rico
  • Take breaks. I try to book at least a two-hour layover when possible so we all have time to stretch and run around before getting on another plane. A long layover lets you eat better food than you would on the plane and allows the kids time to play and get worn out before sitting for another long period. Chicago is often our layover spot, and since the airport is so big, we don't often fly in or out of Terminal 2 (where the play area is), but with a longer layover I can walk over there, let them play, and then get back to my terminal with plenty of time. I also like longer layovers because if my first flight is delayed, I'm not stressing the whole time about missing the next one. It may seem counter-intuitive to stretch the trip out longer than necessary, but those breaks really help everyone stay happy and calm.
  • Use whatever resources you have. In addition to the play areas, many airports have a family line that allows you to jump to the front of the security line. Just ask one of the airline people standing by the lines directing people where to go. Bigger planes have basinets for small babies that you can request. I try to call ahead of time, but you can also ask at check in if one is available on your flight overseas.
On an overnight bus from BsAs to San Juan
  • Entertainment is key. Once in flight, E was so easy on planes because he would happily nurse. It provided some awkward moments with fellow passengers (man, those seats are close!), but he never cried on an airplane. (I like to wear a scarf that can provide some modesty). We always get some new toys for trips and only bring them out on the plane. The airport is for running, people watching, etc. Once we are unable to move, and we've exhausted all the possibilities with saying hi to our neighbors, checking out what's in the seat pocket, etc, that's when the new toys and books come out, one at a time. Only when one has been used to boredom is a new one introduced. 
Any other advice you'd like to add? I could use all the wisdom I can get- these are going to be two long trips coming up!

Friday, June 22, 2012

I Made This: Ice Cream


Lemon frozen yogurt with blueberry sauce from Jeni’s Splendid Ice Creams at Home. It’s the third recipe I’ve tried from this book, and all have been unbelievable. This may be my favorite so far. I also tried the Salted Caramel and the Toasted Rice with Black Tea, which are great together. I cannot recommend this book enough.

Thursday, June 21, 2012

De eso no se habla

De eso no se habla (I Don't Want to Talk About It) is a movie from 1993 by the Argentine director Maria Luisa Bemberg. The protagonist is a young woman with acondroplasia. I had seen the movie years ago, but watching it again now in light of Belalu opened up a whole new dimension for me. I found it on Vimeo, but it doesn't have subtitles, so I'm not sure how many of you have seen or can see it.

A quick plot summary: The movie takes place in a small fictional town in Argentina during the 1930s. Carlota's mother realizes her daughter's condition when she's 2. She immediately tries to erase all references to dwarfs from the town and will not admit to anyone that her daughter is different. When she's 15, the town's most eligible bachelor, a man in his 50s (none other than Marcelo Mastroianni), falls in love with her and they get married.  Then the circus comes to town and in spite of her mother and husband insisting she doesn't go to the show, in the middle of the night she goes to the encampment and ends up leaving with them, dressed as a queen and riding a white horse.

At first I was very annoyed that Carlota essentially runs away to join the circus. As "compensation" for her daughter's condition, her mother had made sure she was well educated. So, becoming a spectacle in the circus does not strike me as much more freeing than the life she was living before, nor dignifying of her intelligence. However, the rest of the movie is inspiring. Carlota, or Charlotte, as she prefers to be called after learning French, is a strong female. She embraces and even highlights her difference, much to the mortification of her mother. One of my favorite scenes is when she stands in front of the mirror in a slip and heels with an embroidered shawl, listening to tango and watching herself dance. Her mother walks in, and horrified at Charlotte's sensual admiration for her own body, rips the needle off the record. She then goes into her room, crying in despair, while we hear in the background the needle being placed back on the record as the music resumes and, we infer, Charlotte's dance and self-admiration continues. And I love how Charlotte rides off into the sunset on her own white horse, even after scoring the "knight in shining armor."

Charlotte has grace, poise, and wisdom beyond her years. She is smart and sensual and refuses to accept her mother's image of perfection, preferring to chose her own. The other characters' weaknesses are portrayed with humor, and the movie does a good job of sketching out this small town where secrets are impossible to keep. The movie was based on a short story by Julio Llinas, which I hope to read soon to see if and how his portrayal of Charlotte differs from Bemberg's.

Tuesday, June 19, 2012

Getting There

Belalu does not stop moving. She is really into pulling herself up and cruising, and her height doesn't prevent her from finding things to hold on to. She is also doing the experimental "let go with both hands and see what happens" move. Essie didn't walk until a month after his first birthday, but I'll be surprised if it takes Belalu that long. She just has too much trouble to get into.

There's an easy metaphor here for our own process of coming to terms with hypochondroplasia. J and I are coming from very different places, but I know we're on parallel paths. I'd say these paths will lead to the same destination, but there isn't really a final stop, is there? It's a life-long journey for our Belalu. I've been thinking these past few days about raising a girl and how it is going to be a challenge to make sure she knows her self worth and values her intelligence and wit (because I can already see she is overflowing with both). And I wonder about body image, which is already so complicated for women in our society. There is a period of social development when most girls are loath to be different, and she will not be able to hide her difference behind the usual masks girls use. I see it as my job to make sure she has a solid, iron-clad sense of worth, confidence, and the insight to see beyond the rough patches. Whew. Deep breath.

If I get overwhelmed as I think about it, I just call on her wisdom. One step at a time. Pull up, fall on your butt, lean on others who are stronger, get up again, move forward.


Monday, June 18, 2012

This Weekend








 

  • Welcomed Juju home for the summer
  • Took lots of stroller naps 
  • Made cupcakes
  • Played outside
  • Got new shoes
  • Tried out the neighbors' sprinkler
  • Celebrated Father's Day with brunch



Friday, June 15, 2012

Introducing Our New Grill!

J prepping it for cooking & making a silly face



 
More of my farmers market veggies: portabella mushrooms and rainbow chard

 








Belalu ate some of the chard, but really preferred the ribs!

Thursday, June 14, 2012

Swinging

Due to a recent Yahoo group discussion, I'm now wondering if this wouldn't be recommended, but the geneticist told us to treat Belalu like any other kid. When we specifically asked about avoiding things because of her back, she told us we didn't have to take any particular precautions. So, here is Belalu experiencing the swings for the first time.
video

Wednesday, June 13, 2012

Community

Feeling like part of a community is an important piece of identity. We all need to feel like we belong. I am member of several communities; some I sought out, while others I just became a part of due to geography or shared circumstances. All are a part of who I am.

Likewise, I want my children to feel like they belong to various communities. We live in a fairly small town, so they are likely to grow up with a core group of people whom they will have known their whole lives. Some will be close friends, others will be merely recognizable because they have seen them at the same coffee shop year in and year out. Many people will be somewhere in between. They both will also belong to communities of people sharing their love of a particular sport, past time, or interest, and these communities will extend beyond the borders of their town.

I hope that being a part of these different communities will give Belalu a strong sense of identity. It is easier to face challenges in the world when you know you have a stable base of love and support always behind you.

When she was born, the local yarn store in town honored her arrival with a beautiful window display. These are the kind of people she will be surrounded by. This is the welcoming love she will grow up knowing.

Tuesday, June 12, 2012

E's 3rd Birthday Party



We celebrated with friends at home. There were many kids there, so we had lots of sidewalk chalk, paintbrushes with water, and sand. The kiddos entertained themselves for the most part, so the adults got to chat and relax. We were told that fun was had by all.




Monday, June 11, 2012

Sharing Our News with Friends

We have only just begun to tell people about Belalu, because we have only just found out ourselves. I don't really have a set way to bring it up, though many times people will say "She's getting so big!" and I'll laugh and say "funny you should say that..."

Thing is, this is shocking news. Yes, she had complications early on, so many people have been asking all along "is everything ok now?" And I was telling them "yes, it must have just been one of those things. She's totally fine and doing well." And now, the story has changed again.

So, people don't know what to say. I get it. Three weeks ago, I would have had no idea what to say to a friend in a similar situation. Almost everything, though, has been what I needed to hear, because I know it's coming from a good place. Besides some comments I won't even share because I'm sure they were from shock and resulted in temporary stupidity, the only thing that has rubbed me the wrong way is when people say Belalu "is perfect in her own way." It's the last four words that get me. Just stop at "perfect."

What I really don't want people to do is to assume how I feel about Belalu's condition, and react "for me." I don't consider this bad news, so please don't treat it as such. The best thing to do is to ask me how am I feeling, so you can react accordingly. Technical questions are fine, too. 

Sunday, June 10, 2012

Disability


Disability. Such a loaded word. I was talking to a good friend of mine recently about the concept of disability. She has a rare condition that affects all areas of her life, but to look at her you wouldn't be able to tell there was anything up. In her case, because her condition is not outwardly apparent, it is downplayed or dismissed by others. Nevertheless, it makes life much harder for her, and sometimes it would be nice if people could recognize her struggles.
In Belalu's case, it's the opposite. She is no different from other children except for her physical appearance. But because she will look different, she will be treated differently. People will make assumptions about her. They may assume that she will be unable to do things or be surprised when she can. While I hope that she will not consider her condition a disability, others may.
So much of this word, disability, has to do with perception. Of one's self, of others. It's a subject I'd like to explore more.

Saturday, June 9, 2012

Saturday Mornings


I like routines and rituals. I also like to shake them up and break them here and there, but generally, routine is good. Especially with little ones. This past winter, Saturdays were "Doughnut Day." But once the Farmers Market opened in May, Saturdays have become "Farmers Market Day." The produce has finally started coming in and today I got beets, rainbow chard, shiitake mushrooms, and sugar snap peas. My favorite veggie ever. I eat them like others down potato chips. Just pop them in my mouth and savor their crunchy sweetness. These were the best I've had this season. I'll have to go back and get more on Wednesday. Sugar Snap Pea season is never long enough around here.
PS We spent the afternoon outside and discovered that our raspberries are starting to ripen. Belalu and Essie loved them. Snap peas and raspberries- what a great day!

Thursday, June 7, 2012

Diagnosis

The geneticist today said that Belalu does most likely have hypochondroplasia. We'll get the test results in a month or so, but it will really just provide concrete evidence to what we all already know. Since JC had done so much research these past two and a half weeks, the diagnosis was not a surprise. Nevertheless, I thought it would somehow change my perception of things to have a specialist confirm our suspicions. My reaction, though, has been pretty much the same.

We'll take this one day at a time. Yes, there is a worry that she will be made fun of; that she will be unhappy with her condition; that she will face discrimination... the worries could go on and on. But it won't all happen at the same time and it won't be tomorrow. There is time. Time to educate ourselves and prepare her to some degree; to instill in her a sense of pride in who she is and her worthiness. Just as we would do if she were of average height.

So, tonight I'm focusing on what I can do for Belalu.

My love,
  • You will have a strong sense of self-worth. You will be loved by friends and family, and you will know you have a place in the world with people who couldn't imagine it without you.
  • You will know where you come from. There will be places that will shape your identity with their landscapes, their memories, their smells and sounds. You will belong to these places.
  • You will discover your passions, and they will help you to know joy and satisfaction throughout your life.
  • You will be compassionate and empathetic, because you will know suffering.
  • You will be strong and hopeful, because you will have overcome it.

    Wednesday, June 6, 2012

    In Limbo

    Tomorrow we go to the geneticist. I am not expecting to get anything concrete at this appointment, but I do think we'll go away with our hunch at least unofficially confirmed. We think Belalu likely has hypochondroplasia. It is considered a "milder" form of dwarfism and is therefore not usually diagnosed right away, since the symptoms develop as the child ages.
    At six months

    Belalu a couple weeks old and finally home
    At three months
    At her nine-month well-check visit we saw a substitute pediatrician, because there is only one ped right now at our clinic, and she is out on maternity leave. The sub checked out her growth chart, and her height and weight have been steadily declining on the growth curve, while her head is increasing. So, with the same nonchalance as if saying, "she has a little cold," he said to us, "she has some characteristics of a dwarf." He said he'd read over her notes from the other hospital and get back to us, which he never did. I ended up calling the hospital myself and getting an appointment scheduled. The soonest was two and a half weeks away, which is a long time to not have any concrete answers, though I now understand that this whole process is likely to take much longer than that.

    This possibility came as a shock to us, but not because it came out of the blue. She spent the first 10 days of her life in the NICU for neonatal seizures and they were testing her for everything under the sun. For some reason, it occurred to me that she might have dwarfism one of the first nights there, and we specifically asked about that possibility, and at the time they told us "no" very emphatically. At three months, we realized she was unable to straighten her arm and Juan was concerned that she could have CP. We started the Birth to Three program where a physical therapist, occupational therapist and teacher/coordinator come in every other week to evaluate her progress and give us goals to work towards. She has been doing very well with that and she has attained more mobility in her arms. We also had a six-month NICU follow-up visit and saw the neurologist, a PT, and the geneticist. No concerns. So imagine our shock and frustration at being told she may have dwarfism after nine months of tests and evals with whole teams of specialists. I have to say that JC has suspected all along that something wasn't right. But, it's hard when she's so small to know what is just a funny quirk of hers and what is a symptom of something greater. To me, she's just Belalu.
    At nine months on a walk with Essie
    It's going to be an interesting day tomorrow. I'll be going to yoga before we head to the clinic. Essie will stay with friends so we can focus on what the Dr. has to say without distractions.


    Monday, June 4, 2012

    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



    Sunday, June 3, 2012

    Madison, WI

    This past week the kiddos didn't have daycare, so we took a short escape to Madison for a change of scenery.
    We found a cool playground near the condo where we stayed.

    Animal watched at the Madison zoo



    People watched and played on State Street

    Climbed the walls at the Children's Museum
    We were lucky to stay at a condo owned by our friends, and it was the best arrangement with two little ones. Each had their own room, so no one was impeded by the different sleep/ waking  schedules. Plus, having a kitchen made meals easy, though we did try some local restaurants, too.