TinyE on tee-vee!
The local news station did a great story about Little Fins, and TinyE makes her first television cameo about 1:30 into the video.

You can read part of the story and also watch the 4-minute video here. If the first video doesn't work, try clicking on the link "Having trouble viewing this video? Click here." and another version will pop up. (note: the introductory ad comes on LOUD!)

Bangs
"Bangs" partial lyrics. By: They Might Be Giants. 2001


Bangs.
Above your eyes your hair hangs
Blow my mind, your royal flyness
I dig your bangs


Bangs
To drape across your forehead
To swing concordant angles
As you incline your head (bangs)


And although I liked you anyway,
Check out your haircut:
A proscenium to stage a face
That needs no makeup


Bangs (bangs)
Are that on which the world hangs
I'm only holding your hand
So I can look at your bangs
I'm only holding your hand
So I can look at your
Bangs.

Hair today
We had the talk. Dave looked at me and said, "When were you thinking we'd cut her hair?" To which I replied, "Oh, it only has to get a little longer, and then I can put it in a ponytail, or pigtails, or a braid, any way she wants, I don't care, I'll do her hair EVERY day before I go to work. It'll be fun."

Pause.

"Yes," he said, "When she actually has a say in how she wants to wear her hair. But what about now?"

To which I replied/pleaded, "Oh, it only has to get a little longer!"

I admit, and we both agree, she's got the scruffy look. But it's the type of free-flowing scruffiness that's just one simple haircut away from loosing that baby look. Happily, I have a wonderful mate in Dave who is supportive of...and not trying to dissuade me from....the whole notion of fiddling with hair clips that inevitably slide down, and brushing her hair back from her forehead.... just a little longer.

November!



pictures from Grandma K

We had two big appointments this week: our one-year checkup with the geneticist and one-year appointment with the pediatrician.

TinyE came through with flying colors each time. The geneticist is impressed with her developmental progress and still believes the small arm is simply a sporadic event; however at this point she said we can test for something called Robert's Syndrome. She told us NOT to look it up online, and she doubts that this is even our case. Yet, the very small chance means it is something to test for (most children with Robert's have all four limbs affected and several other complications, a very small percentage have no other symptoms. The only factor we identified in TinyE is that the children are born with dark hair that turns silvery blond -- big whoop, that's how her Dad's hair was as a baby). They drew a blood sample and we will have the results in a few weeks.

Our pediatrician appointment was also good. Tiny E's stats are:
31-3/4" tall (97th percentile)
23.6 pounds (80th percentile)
The reception staff was a bit rushed and gave our doctor the 15-month appointment guide, so we had finished all the developmental questions (is she walking? using words? pointing to objects?) before the doctor realized the mistake. "Goodness!" she uttered, "We've been doing the questions for 15-months and she passed all of them... she IS advanced!" Exactly the kind of thing a mother has to pass along to everyone she knows....

Now we are one




Above: With our doula, Marion. We never got a picture with her before this!

Oh, the things that walking brings...!

"Dungarees look so much cooler."


"There's nothing good in here... who buys the groceries in this family?!"


"I challenge this shrubbery to a duel!"


Coming to get you!

How do you know when you're having fun?

I get to go outside with Mom as she waters the plants.


She lets me play in the water, never mind the mess.


I try to taste the puddles.


My curls blow in the wind as I survey my yard.




Soggy diaper... dirty bottom... fistful of stick... I'M HAPPY!

Puppy Love
Our neighbor has a new teacup yorkie puppy and brought him over for a visit... sending Tiny E into gales of laughter (although it doesn't take much for that to happen).



Cruisin' down the hallway
TinyE in cruising position: Left leg bent back as a rudder, right leg pulling her forward, left arm ahead for balance. And away she goes...!

Moon River
Nine months old now... and a budding artist with her own musical technique!

Twirl Girl
Introducing.... the ribbon-tulle dress! Now, with these special features:
- Choose from custom colors to match the wedding you'll be attending.
- Comes with ribbons sewn into the skirt, so you have something to play with during the ceremony.
- Easily detaches from your cotton jumper so you can really cut loose on the dance floor at the reception.
- Elastic can be swiped out for a longer piece when you get bigger.
- Caters to your Mommy's hidden desire to dress you like a princess.

Happy Place

I love this picture we took last night, because it is where I want to be all the time. Work is so busy right now, and as my Dad would always say, "That's good! Better to be busy... makes the day go faster. Beats the alternative."

Busy, right now, is also about working nights, after TinyE goes to bed. After 10 hours at work yesterday, I left the office at 4pm to "get a break" before digging back in. (again, didn't quite work out. I chose sleep over work later that night.)

So the evening hours with TinyE were refreshing and breathtaking at the same time. Glorious simplicity, sitting on the floor and looking at blocks. Playing in the backyard and taking pictures in the sun. And then, we rounded out the night by sitting on the front steps of the house and creating a new pastime.

"Red car," I said, as a red car pulled up to the three-way stop on our corner.
"Grey truck. He made a full stop, thank you."
"Six trees in our front yard, do you see? One, two, three, four, five, six."
"Blue jeep."
"Mommy walking her baby in a stroller."
"Man jogging."
"Blue car."

Just a lazy, rolling narration about the cars, people, and birds sharing our corner of the world. Initially, it was my simple attempt to keep her happy and calm the last few minutes before bedtime. But it turned into a nice little moment. Her eyes followed the things that I pointed out to her, and she blinked slowly as she took it all in. She leaned against me in quiet contentment, the same way I was feeling.

I'm breaking from proposal writing to post this, because I wish I was back on the front step right now. That is today's happy place, and that is what I am grateful for. It's why I'm doing this work in the first place, I guess.

Another report from the High Chair

Singing for her supper.




Baby gets a brand new 'do!
(look closely at the last picture and you can see the two new BOTTOM teeth sprouted this week!)

What I did on Independence Day
by TinyE

Held my bottle all by myself, for the first time:


Fed myself some solid food, for the first time.
Can you believe this is my first encounter with Cheerios and bananas?!
What prowess!

Summer is for pretty dresses!




Little Fins picnic pictures
Pictures from our June picnic with Little Fins posted here!
My link takes you to the second page, where our picture appears in the second row. Ramona's new pal Katelyn is the little darling directly above us.

Let's go swimmin' now!
Come on, folks, how long does it take to set up a pool?
I wanna do some splashing!





Dad entertains TinyE with some laps:

Like Daddy, Like Daughter
After seeing yesterday's pics, Karol sent this one to me (thanks!). I showed the two photos to a co-worker and he said, "You've got another musician on your hands... that's how it happens. They start out sittin' under a tree, thinking about things..."

Daddy at 8 months


TinyE at 8 months

Eight Months Old Today!






























I haven't been in this swing since I was little.....gosh, I always thought it was bigger.






















(2 months old. Yes, that's my dark hair.)

Who wants a TinyE Float?!

TinyE prepares for her upcoming pontoon ride by trying on her Personal Flotation Device.

This just in, on the heels of my last post.
I received the following email from TinyE's Dad:

Amazing Man
Look at these baseball statistics for a moment.
A ten year career with maybe one or two really spectacular years, right? Not a huge deal. A somewhat above average major league baseball career. But guess what. This guy only had one hand.

addendum
Jim Abbott Speech Excerpts
Personal message from Jim Abbott to Parents of Children with a Limb Difference
Click here for more information on Jim Abbott, one handed baseball pitcher, and other Motivational Keynote Speakers.

Thanks to TE Dad for finding this great stuff.

A Twist on the Serenity Prayer

God grant me the serenity to accept the things I cannot change,
courage to change the things I can,
and the wisdom to know the difference.

A combination of events made me think of this today... because here are the things I would like to change, in case anyone in charge is listening:

NUMBER ONE. Animals and vehicles will never collide. Along those lines, animals will never, ever find their way onto or be trapped on freeways.

NUMBER TWO. All babies will be born healthy and free of physical challenges, with bright outlooks for health and happiness. No child shall incur physical/emotional/mental disability or hardship of any kind. Upon reaching age 18, all humanity will be subject to reaping what they sow... from that point forward.

In other words, you get a free ticket for your childhood. Kids just get to be kids. Hardships and/or differences will be doled out to people when they reach an age of reason....if something bad happens to you, it's because you earned it through your behavior and decision-making. Differences will no longer be labeled "sporadic events".

Here's the full version of the prayer, found on wikipedia:

God, grant me the serenity to accept the things I cannot change;
courage to change the things I can; and
the wisdom to know the difference.
Living one day at a time;
enjoying one moment at a time;
accepting hardship as the pathway to peace.
Taking, as He did, this sinful world as it is, not as I would have it.
Trusting that He will make all things right, if I surrender to His will.
That I may be reasonably happy in this life,
and supremely happy with Him forever in the next.

I can't even begin to explain how many problems I have with this. Accepting hardship as the pathway to peace? Trusting that he will make all things right. Reasonably happy now and supremely happy in the next...?

Whatever. Maybe if I got some answers to my questions. MAYBE if someone would just implement items one and two as listed above... then we can talk. That's just the kind of mood I'm in today.

Disclaimer about differences being a natural part of life is not going to be included.

6/22 addendum:
The freeway I take into work will now be known as "the freeway of death", as a very small, very dead fawn was askew on the inside shoulder this morning.

Picnic Girl

TinyE got dressed up special for our very first outing with Little Fins (with an adorable resemblance to Scarlet O'Hara, complements of some clothes from Grandma J and Aunty C). Little Fins is a local group that was formed in 2003 by families whose children have upper limb differences. From their website:

In March 2003, our daughter Lila was born missing her right hand. The doctors defined the occurrence as a "vascular event - a failure of formation". Over time we found other families in the area that had experienced the same event in their lives, and like us, were searching for others to share with. Within a few months, we had located and added to our group close to a dozen families, and the list continues to grow.

As our group grew, we decided a name that was fitting to our situation was appropriate, and went with "Little Fins", after the Disney movie, "Finding Nemo" where the main character, Nemo, a young clown fish who goes on an awesome adventure, was born with a "little fin". An inspiring movie to all, it is especially meaningful to our family members who have "little fins" and tells an important story that nothing is impossible.

We had a really great time meeting the other families and watching the kids interact. Upon arriving, we found a table of parents who called themselves "The VH Table", named after the hand surgeon we all have in common. We compared our experiences with the children's hospitals, Shriners, and OT services.

One other family has an 8-month old named Katelyn, who immediately crawled over and grabbed TinyE's face - repeatedly. It was fun to see the differences in our two girls, just being one month apart in age! I think Katelyn was far more interested in TinyE, and TinyE was a little started by all the groping and giggling! Eventually they settled back into their individual worlds, quietly playing on their own (or as Dave said, "enjoying a meal together" as they chewed on their toys).

Meanwhile, Dave and I got to talk with Katelyn's parents. It felt really good to just sit with other people and answer questions like, "Did you know about her hand before she was born?" "What was it like when you first saw it?" "When did you first see Dr VH?" "What are they telling you about surgery?" "Do you really believe it when people say they don't notice it?" "Do you feel like you should say something when people notice but don't ask about it?"

Another commonality: almost every family in Little Fins is living by the credo "Wait and See". Some children have been fit with prostheses, some (like TinyE) are still discovering their realms of functionality, some are in the process of surgeries. Everyone agreed that they liked Dr VH's tendency to wait before doing any radical surgeries -- giving the children every opportunity to develop what they have before embarking on procedures that they can't come back from.

Shortly before we left, we had a chance to talk with another mom there. Instead of standing there with toys or books in her hand, she held her daughter's "arm" while the little girl ran around, just doing things that kids do. And she said, "Oh, it must have been difficult having your first baby but also having to deal with this." She was very supportive, and I thought about her comment on the way home.

It was difficult, yes, but maybe not the way you'd think. Physically and emotionally, there were all those challenges and questions and concerns that go with learning how to take care of a new baby... a first baby. But TinyE's arm didn't take any more care -- in fact, all we did was tailor her clothes so that her little arm was out and accessible to her.

The hardest part was keeping our minds free from borrowed trouble -- all the questions about the future. (i.e., sitting up at 2am, sobbing over a one-week old baby and wondering if she'd ever be able to drive a stick shift... not that it's something her mom can do at age 36! ) We decided from the very beginning, that there was a lot more to focus on besides her arm -- we had a brand new little girl we wanted to get to know.

Looking around at the other families that day, it was a pretty typical gathering. Kids were playing, causing mischief. Snuggling up to parents. Making friends. Chasing a brave bunny that wandered into the yard. One little charmer was walking around, shaking people's hands.

Nothing different about these kids at all.

Daddy's Little Baseball Fan

Memorial Day Photos
So many mornings I leave the house for work, looking at my pretty little girl, looking at the bright sunshine outside, and thinking of the day I'd rather spend with her. Memorial Day morning she woke up around 7:30 and by 8:30 we were on our way to that kind of day. We spent a few lovely hours at the Rose Gardens, introducing TinyE to the flowers, fountains, and unlimited space for rolling. Enjoy the photos.