Propping!!

I am so proud of Julia. After some physical therapy and exercising, she has mastered the art of propping herself up!! Still not for a long time, but it's coming, and her arms are getting stronger and stronger.

I'm starting to understand what people mean by how very gratifying it is when a child with DS gets something. It takes longer, and it might not even be such a big deal for parents whose kids are already crawling, but it is absolutely amazing. I don't think I could be any prouder of my strong, resilient little girl. She works so very hard, and she's been progressing in leaps and bounds. Next thing you know, I'll have video of her crawling!!!

It's HOT outside!

Dear Julia,
So this is what it's come to. We sit around all day, inside, in as few clothes as possible. Here you are today, July 21, 2011, in just a diaper (one of those pictures you'll just love me for when you're older!). But it's 98 degrees outside, with a heat index getting close to 120. I went running today and wanted to take a cold shower, but the water wouldn't get cold--the water heater probably doesn't have to do much work nowadays! I turn on the radio, and NPR talks about the heat wave, the unbearable temperatures. One interviewee even said that it's like "Satan opened the gates to hell."

Now I know about the dangers of heat stroke; it's why we sit inside all day. And you know I like to be out and about, so this is far from the ideal situation for me. Yet as I listen to complaint after complaint, I can't help but think of the days I was snowed in in Worcester, Massachusetts, digging my car out every single morning before I had to teach, wishing I could move down south where it's warm and I can run all year round. Well, I got my wish, but then I sit here, sweltering, and complain. It seems to be true that people in general are never satisfied with what they have, always wishing for the "other side" of the road, the place where the "grass is greener." As the immortal Sheryl Crow put it, it "ain't having what you want, it's wanting what you've got."

It's sometimes a struggle to want "what we've got," especially in a culture that always wants more, different things all the time. We must "move up" in the world, get the newest gadget, have the nicest house, give our children what we didn't have. But what about what we did--and do--have? The things we never appreciate? William Blake writes about seeing "infinity in a blade of grass." And truly, if we look at that little blade of grass, we see a complex system requiring chlorophyll and sunlight, made up of infinite cells, each with its own molecules, inside of which are quarks...and the list goes on. Sort-of to infinity. Those Romantics were right about a lot of things, I think, yet we seldom stop and, literally, "smell the roses." Or take some time to think about what we're grateful for. So instead of complaining about the heat, I'll be grateful that I have a home with central air to which I can retreat. So few people in the world do. I'm grateful that I live in this beautiful place and can see palm and palmetto trees every day. I'm grateful for the SC peaches I've been snacking on, which I think are among the most delicious in the world (I hope you like them too). I'm grateful for my friend Irina, with whom we went to the Children's Museum today. I'm grateful that I have the summer off from teaching and can spend this precious time with you (I'm grateful to have a job to which I can return). And most of all, I'm grateful for you, who can sit there, in your diaper, and truly enjoy every new thing you see: every new color, texture, sound, shape, and taste. As Wordsworth put it, the "child is father of the man" (or, I might say, "mother"). We learn from little babies what is truly important and valuable in life.

So I would love for you to keep that curiosity, that joy, that desire to learn and to be amazed by the world in which we live. Enjoy everything and don't worry about moving ahead; just be happy to be here, to be alive, and to be loved. If I could give you anything, it would be contentment, an ability to live in the moment. So as we sit inside, I'd like to cherish this time instead of grumbling about it. I know that you do.

Gamer Chick

As my friend and neighbor reminded me, I haven't updated this for a while.  There's so much I could write about: Julia found her thumb and sucks it now, she's almost completely lifting her head up, and her and I have little laughing contests.  She's really much more interactive than she was, and she seems to discover something new every day.
So why am I writing about gaming?  Those of you who know me know that I'm not much of a gamer (now there's an understatement).  I just never really understood the allure of video games versus something like running or reading a good book or watching a cheesy romantic comedy.
But for father's day, I bought my husband this little onesie for Julia (it says Gamer Chick), and I thought it would be cute to put her in Ben's chair and give her one of his controllers:

Julia loved it, and this started me thinking about gaming and the way Ben and his friends feel about it.  So I decided to read up on it and read this article:
http://www.apa.org/pubs/journals/releases/gpr-14-2-180.pdf
It's a really interesting article, but I'll just comment on a few main points.  I, too, used to share that stereotype of games as isolating, Rickets-causing, violence-inducing activities.  Yet what I see from Ben and his friends is that they are indeed "intensely social."  Since his closer friends and his brother live far away, he uses games as a way to connect and talk with them.  And what really impresses me about this version of socializing is that it's done at home, often with other family members around.  Ben's brother's wife might be watching, and his friend's children are often around, audible in the background.  When I lived in Hungary, one of my friends used to go out with us, leaving his wife at home alone to care for the baby.  This activity is done in the context of the home- of family- and is so much healthier than binge drinking or eating copious amounts of pork rinds at a sports game.
The point about visual-spatial skills, "which are typically less developed in girls," is also well-taken.  I myself suck at reading maps, putting together furniture, or coordinating which way my video game character is looking vs. which way he/she is moving (it doesn't help that I grew up in the era of Donkey Kong).  Especially for kids like Julia, these skills are incredibly important, as gross motor function might be delayed.
The place where I get tripped up is thinking about types of games.  So, for instance, we just got a new Kinect, which I enjoy playing with.  I also like Rock Band, and I tend to like puzzle games like Angry Birds.  But what about a game like Grand Theft Auto or Halo or the current favorite, Dead Again?  I have to admit that all of the shooting, the gore, the constant violence just turns me off.  Yet this study claims that exposure to fear is beneficial to children if they learn how to work through it:

                        " Victorian-era parents acknowledged that children would inevitably confront fear-inducing situations; the prevailing view was that learning to face or even master fear could improve character. “Good” modern parents are supposed to limit their children’s exposure to “negative” emotions, including fear, rather than celebrating their ability to cope with and overcome fear."
I agree that Victorian and Romantic-era fairy tales are far more gorey than the sanitized versions we share with children today.  I also agree that teaching a child to "cope with and overcome fear" is really healthy and necessary, but I'm not sure I get how games would do this?  And I'm not sure "fear" would be the dominant emotion- the one expressed earlier in the article is "aggression," which seems to far better fit the bill.  Maybe some of my gamer friends can help me out and comment on this.
Last but not least is the issue of gender.  I do wish that female characters weren't hypersexualized.  While I'm glad they are becoming more powerful, a young girl shouldn't have to grow up seeing female power as affiliated with having huge breasts or a tiny little waist.  Since more and more girls are playing video games, I wonder whether this will change.  Maybe we will evolve to genderless characters, characters who don't impose masculine or feminine, able or dis-abled, values on the players?  That would be a true method of escaping society's constricting norms.
I clearly have more questions than answers, but I at least realize that the issue is a complex one.  One thing I know for sure: I want Julia to grow up to be a kind, giving, accepting person.  When I think about the people with whom my husband plays, they are some of the most giving people I know.  Lee will patiently explain to me the rules of a game, and he will equally patiently give me a hug or listen if I'm upset.  Greg is equally giving, and his game-playing actually fits with his interest in medieval history and literature.  My friend Cassie is a gamer, and she too can put herself in so many people's shoes, assuming (as it were) different avatars.  And I've already written about Maggie, who is so patient when she watches Lee play games.  I wish I could be as selfless in supporting Ben's interests, and I would be proud if Julia grew up to be like them.
So despite my misgivings and my questions, I'm willing to see that gaming does offer lots of positives.  It might not be like running, which is painful at first and gives rewards much later...although now that I think about it, learning to play video games must also be a long, frustrating process.  It's probably even better than watching cheesy, mind-melting romantic comedies, and I do enjoy those.  If she chooses gaming as something she enjoys, I know I will support and take pride in my little "gamer chick."

Julia's Dad, My Husband

May is full of anniveraries for us, some not-so-happy, some joyous. Today is the five year anniversary of my marriage to the most remarkable man I know, Julia's dad. My ring fits a little more snugly than it did five years ago...but then again, so do we.
Like all couples, we fight and disagree, but talking through these things has really helped us get to know one another, and to work as a team in raising Julia. Sure, we have less time together (alone) now that she's here, but being with the two of them every night, with Julia hanging out in her Daddy's lap, is an absolute joy.
In five years, we've been through a lot and learned a lot. Thankfully, we've grown together. He has taught me to stick up for myself, to speak my mind more than I did. He has not only respected my work, but pushed me to do more, achieve more. Most importantly, he has taught me that I deserve love, that I am beautiful as I am, inclusive of my flaws and foibles.
And what does this all have to do with our beautiful little girl? Well, I think a lot. First of all, I'd like her to read this someday and see how much I value our marriage, our partnership. I'd love for her to find a partner some day who will respect and love her just as much, and I want her to know that she 100%, absolutely, no matter what, deserves all of the love in the world, and that she's beautiful, not despite her imperfections but, as Gerald Manly Hopkins writes in "Pied Beauty," because of them:

GLORY be to God for dappled things—

For skies of couple-colour as a brinded cow;

For rose-moles all in stipple upon trout that swim;

Fresh-firecoal chestnut-falls; finches’ wings;

Landscape plotted and pieced—fold, fallow, and plough;

And áll trádes, their gear and tackle and trim.


All things counter, original, spare, strange;

Whatever is fickle, freckled (who knows how?)

With swift, slow; sweet, sour; adazzle, dim;

He fathers-forth whose beauty is past change:

Praise him.

Who would say that a "brinded cow" is beautiful? And yet, none of their spots, or the markings on trout, or even the tiny finches' wings, are ever the same. I hope that all of you reading this, my dear friends and family, realize that you are beautiful and loved because you are "original," some may even say "strange," and (if you're like me!), "freckled." And I hope you all have or had a partner who can show you, day in and day out, that this is the case. I want Julia to know how remarkable her father is, so here's to many more years of marriage and parenthood, many more years of discovery and exploration, many more years of unconditional, perfect love.

Julia--her baptism and her namesake

I have a lot on my mind today.  As I sit outside in my rocking chair, with Julia sitting and snoozing in her miniature rocking chair next to me, I think about God and his plan for our lives.  A year ago today, I found out that I was pregnant with Julia; it was also the anniversary of my father Julius's death.
For a long time, I've wanted to name a child after my father, and I think Julia was meant to be.  In her, especially when she sleeps, I can sometimes see little behaviorisms that remind me of my dad.  Today is the tenth anniversary of my father's passing, but sometimes I feel that he glances back.  I felt that strongly when I ran the San Francisco Nike Women's marathon, and I felt it even more at Julia's baptism.  I just knew that my dad was looking on, smiling.  I know that he would have adored Julia and am really sad that they never met, but I felt his spirit there, in that church, along with all of the other saints and, of course, the Holy Spirit.
Julia's baptism was absolutely amazing.  I know that sometimes, people look at sacraments and see them as symbolic or, even worse, ostentatious, but I think that Julia felt the import of this event.  As usual, she slept through the readings (she's gotten quite the reputation!), but she woke up when it came time for the actual baptism.  She started lifting her little arm up as we got closer to the actual baptism; by the time father Peet held her, she had both of her arms held out, as if to greet her buddy the Holy Spirit:

And when Peet made the sign of the cross with the oil and sealed her as Christ's own, she broke into a glorious smile.  Sure, it could all be coincidental, but I believe this child felt God's presence, and my father's presence, in that space, that time.  I can't explain things in any other way.
I was also incredibly grateful that my amazing friend Cindy was able to come all the way from New Jersey and be one of Julia's godmothers.  Cindy had met my father--she's one of my really long-time friends.  Another "coincidence" is that her birthday is also the day of my father's death (happy birthday, Cin!).  She is like my sister and has always been there when I needed someone, or just needed a laugh.  So it was wonderful that Julia immediately fell in love with her Godmother:

Julia doesn't do that all-body smile for just anyone!  I know in my heart that Cindy will be such an important, integral part of Julia's life.  One of her Godfathers, Greg, couldn't make it this weekend, but he will also come visit, and I know that his presence in our lives will also be a blessing.
Finally, Julia acquired an entire second family in my friends Eliza, Mark, and their daughter Beatrice.  I haven't known Eliza and Mark as long as Cindy, but they were the ones who introduced me to the Episcopal Church, and they have become like family to us.  So it was natural that I would also name Eliza and Mark as Godparents; after all, we have been through so much together, from our wacky trip to Charleston years ago, to our bonding when Eliza had to be a baseball widow, to my bouts with anxiety, to the tragic death of their first-born child.  When Bertie was finally born, I believed strongly that she was a gift from God- not a replacement of any sort, but a blessing.  She has turned out to be such a special child, so gifted with empathy, kindness, and a strong spirit.  She calls Julia her sister, and I do believe they are meant to be Godsisters (Bertie is my Godchild!).  So it seemed right that this family also shared in this special moment with us:

I could go on and on--and I'm already in tears--but I just want to say one last thing about family.  While my Hungarian family, including my mom, couldn't come, I know they were thinking of us, and Julia wore a beautiful cross that she received from my mother.  Ben's family did come, and their presence meant so much to me.  His mother made Julia's baptismal gown, his brother recorded the video for my Hungarian family, and my sister-in-law took all of these pictures you're looking at!  It was right that Julia's introduction to the household of God should happen amidst all of these people who downright adore her.
So as I sit here mourning the loss of my father, mourning (to an extent) the fact that my perfect little girl has Down Syndrome, I can't help but think about the beautiful weather outside, the light breeze that grazes Julia's cheek as she sleeps, the slight smile on her face right now as she dreams about God knows what.  Maybe about her baptism.  All I know is that, if there is a season to every thing, this is a season of renewal, a season of rebirth, and I know my dad is smiling down on us, proud and touched by his little namesake.

Grandparents

I was dressing Julia this morning and decided to put her in a top that my mother bought her. Then, I also put her in booties, as well as this adorable bonnet, that my mother-in-law knitted for her. As I was doing this, I couldn't help but reflect on how lucky Julia is to have such unconditionally loving grandparents in her life.

It is ironic that I can only show things to represent love; from the beginning of Julia's life, when she was a fetus, we did not want her to conflate material possessions with affection. Some things, though, represent devotion, like knitted booties and a bonnet, or the sweet little dog pillow my mom embroidered for her. Even more special, though, are everyday actions: the little things that define our love for others. My mother, for instance, was there when we received Julia's diagnosis, and she's never stopped just loving this little girl for who she is. One of the things we look forward to is mom singing to Julia again; I forgot how much she loves to sing, and what a beautiful voice she has. Julia really grew to love the singing and had started giving mom smiles. This, and speaking Hungarian, are such gifts that mom has shared, and will continue to share, with Julia.

I know my father would also have adored this child. Often, when I have to rock her little butt to get her to sleep, I think about how my dad used to do the same for me. I just hope--and believe--that he's looking down from heaven, and that he's justifiably proud of his little namesake (his name was Julius, and Julia is named after him).

And last week, my mother-in-law came to spend some time here and shower Julia with love. This woman, who I admire so much for her ability to multi-task and keep up communication with some many people on her cell phone, actually put the phone down and, even more surprisingly, just let it ring...because she was spending time with her granddaughter. It's such a little thing, but we were touched by her desire to devote her entire day to being with this little person. She would also give her little tours of our yard, which Julia really enjoyed. She actually arches her little face up toward the sun, sort-of like a cat, to catch the warmth. I know that when Julia gets older, Patty will teach her the names of all of those flowers, and I can just see the two of them doing yardwork together.

Julia hasn't seen her grandpa as often, but I'm counting on the special relationship they will also have. In fact, he told me he had a "secret nickname" that only Julia could call him! Ben tells me about growing up, playing with his dad; they would take cardboard boxes and pretend they were cars, or play with homemade swords and shields. As I get older, I realize that the gift of time is the most precious gift of all.

I can't end this post without mentioning Julia great-grandparents: she has two of them, which is two more than I had! Her great-grandfather has already visited her once, and he held her, literally, the entire time he was here. She's already received a beautiful necklace that was his wife's and has her initials (the same as Julia's) engraved in it...and she's received multiple letters, all of which are in her baby book, and even a Valentine's card. My grandmother is farther away, in Hungary, but she also asks after Julia all of the time and had a necklace made for her out of my grandfather's wedding ring. My grandfather unfortunately died just last June, too early to meet Julia, but this way, I feel his presence also in her life.

As the Psalm says, "My cup overfloweth." Julia has the best grandparents in the world, each with her/his own unique gift to give to her. And these gifts are, to be cliched, worth more than anything money can buy.

Happy St. Patrick's Day from me and Julia!!!