Los Pininos

Six stories from the week Elliot turns SIX

2011-08-04T04:07:00.000-07:00

Just last night, I was holding Elliot in Ms. Georgia's pool, and noticed I had cupped both my hands underneath his head, and was holding him out from my body, just like you'd hold a little baby when you'd want to look deeply into their eyes. Staring back at me was a little boy, with 20 teeth in a wide, happy smile, a fresh haircut plastered with pool water, and laughing eyes. He only let me hold him like that for a brief moment before he said, "Mama. Let me go. I want to swim. Mama, let me go." I wonder if, all his life, he will be asking me to let him go.

Yesterday, Elliot stood on the deck of the same pool, and put his head down on the side...I thought for a moment he was going to do a dive. Instead, he let himself roll forward into a tumble. He had done a tumble set into the pool. Ana shook her head in amazement. "How did he do that?"

The night before his birthday, we came home from another night of swimming, and passed out in a heap on our bed. At 2:30 in the morning, Elliot woke up and seemed uncomfortable. After 30 minutes, we discovered that his back and buttocks were covered with hives. These returned an hour before his birthday dinner the next day. My mind has been swirling with a sense of impending doom. I have heard too many stories of late-onset nightmares...You, you party hard, and ask for your presents.

Elliot returned to the pet store with Kevin to get some other necessities for his birthday turtles, whom he's named Ang and Kitara. He reaches into a pond, pulls out a large turtle who bites him on the chest. He's afraid and hurt. He returns home and gets cleaned up. 10 minutes later, he's asking to hold his turtles.

On Sunday, we are going on a bike ride. You seems tired and sluggish, and can't get too far. Ana has zipped forward, and is looking for locusts in Ms. Nancy's crepe mrytle. We get stuck several houses down. The neighbors come out with their dog, and the owner proceeds to play fetch with a soppy ball. Within minutes, you are in charge, whipping the ball out, laughing gleefully as it's returned to you. Oliver gets off my bike, wanting a slice of the action. You engage the neighbor, and then her husband, and then their friend in several conversations. Mr. Kyle drives past and you begin asking him about his new car. A few minutes later, the neighbors ask if we'd like a big bag of shrimp. That a friend gave them 60 pounds. I motion Ana to come back to us, and we begin the trek home with our bag of enormous, dripping shrimp. We only make it about two houses. You are really struggling on your bike. A second later, the neighbor comes by in her fancy dog grooming van, and asks if she can give your bike a lift home. You cry as she puts it in the the van, and she offers you a lift too. You climb into the passenger seat, grinning from ear-to-ear, and begin your 20 questions about her amazing ride.

Last night, as you went to sleep next to me, you gently played with my earring. Your body seemed long, as you stretched out in the bed, your lids kissing your sweet cheek. Where has the time gone, my love?

Elliot's big announcement

2011-07-03T01:03:00.000-07:00

This spring, like most other parents, I set out to find the perfect summer camp for my children. Ana has attended a popular uptown camp for the last 2 years, and has come from these experiences with a broader understanding of the world, a host of new friends from different schools and backgrounds, and personal growth. I wanted these same things for Elliot. Last summer, he was "home with dad," with no camps that we knew of taking children that age who weren't potty-trained. Despite her love of camp, Ana envied Elliot's "free" summer...I felt we'd failed to continue Elliot's learning, growth and socialization. I was determined that this year would be different.

Ana's Camp, The J3wish C0mmunity Center, did not feel that his needs could be met there, and in talking with the director, I doubt they will ever dedicate the energy to create a more inclusive camp experience. If we had endless resources and could afford the hefty camp fees plus a daily personal attendant (which is more than Elliot needs), then he could go anywhere. But this is not our reality.

From my research, the only option for Elliot was Camp Ra1nbow, run by Jeffers0n Parish, Parks and Recreation, a camp for children with disabilities. Elliot would be 2 months shy of the age 6 requirement. I learned through pointed questions, that a birth certificate would be required...but that a strong letter to my councilperson, the city attorney, and supporting documentation for our child's therapist might go a long way. I got to writing those, and was surprised at the efficiency of the city's response. By the end of the week, I was informed that Elliot would be allowed to attend the camp. And while this camp for children with special needs would not assist in the diapering and potty training of my child, "we'd figure something out." I was so excited, and began talking with Elliot about CAMP!

In the meantime, I learned about a camp being led by a former dance teacher of Elliot's: Kid's Play NOLA. I contacted the director, Dana Reed, and asked if she felt that Elliot's needs might be met there, and if we would assist in diapering once a day, would they make an accommodation. She said we'd try it out...

On paper, I think my child scares people, although I believe there are a lot of fears about children with special needs and inclusion because camps simply exclude them, and don't challenge themselves to do more. And granted, with many of them simply hiring staff a week or so before camp, I don't want them taking any risks with my child or any one elses. Something about this needs to change...

So our plan for the summer was 2 weeks of Camp Ra1nbow, 2 weeks of Kids Play NOLA, 2 more weeks of Ra1nbow. There's something to be said about bringing your child to a special needs experience with a wide range of development. When dropping Elliot off, I could see that some children had severly limited mobility and speech, cognitive awareness, social skills, etc. We were bringing him to a Jeff Parish playground, so the environment was not prepared for children...concrete walls, banquet tables, etc. Elliot LOVED seeing the basketball court, and that's where we said "goodbye," and he was quite happy. As Kevin and I walked away, we talked about the staff, and how lackluster and uninterested they seemed, especially for a first day and first meeting of a child. I had a nagging feeling, but dismissed it...I so often have to talk myself through these new experiences with Elliot (otherwise, I think he'd still be at home!)...

We made our way there for a mid-day diaper change (such a pain that this is an issue), and by the time we picked him up at the end of the day, he seemed happy but ready to go. After the first two days, it seemed that every time I picked Elliot up from camp, the TV was on...and teachers were on one side of the room,volunteers were playing board games with EACH OTHER, and there was nothing inspiring really happening. I have nothing against TV, but the times we picked El up varied greatly (1, 1:30, 2, 2:30, 3, 3:30, 4)...always the TV. One day, he grabbed the remote, and as I told him to put it down, the teacher interjected, "He's probably just pressing the 'Play Again' button." Yeah. Probably.

We'd worked out a payment plan with one of the volunteers to change him ($40/week), so that was easier, but why were we driving him here each day? In so many ways, this population needs an exceptional staff who can help bridge relationships across abilities, challenge the children's growth, engage them in new ways of feeling and experiencing life...and instead, I felt like I'd dropped my child at an institution, where the world had given up on him and his beautiful friends. The nagging feeling persisted...Do we bring him back for the last two weeks, and just look at it as daycare? Kevin's work schedule required 2 early days, but we could make it work.

Well, we tabled the discussion, as Kids Play was starting. This experience exceeded our expectations for what any camp can do. Each day, we were greeted by happy counselors, and a collection of children enthusiastically welcoming Elliot. We could see he was making friends and that the couselors recognized all the things that we love about him. Elliot would come home talking about yoga, meditation, dance, drumming, and "jumbo, jumbo." I contacted the director to tell her what an amazing time Elliot was having. She wrote me a short email: "Elliot did a dance around the room today, and the whole camp cheered him on. He is a joy, and adds so much to our experience." I cried. And read it again. And cried some more. Our child was being received in the same way we receive him at home--with great joy for his uniqueness, in celebration of his spirit. Wow.

We were excited about Kevin's day of volunteering. What would he learn about Elliot's day? Kevin volunteered on the second Thursday of the camp. The stories he came home with were beautiful-At morning meeting, the children gathered in a large room (the camp takes place on Tulane's campus in an arts complex). Mr. Seguenon, a drum teacher of unknown African origin, led the children in playing a xylophone looking instrument with gourds at the bottom. He would play a pattern of notes, and invite each child to try and replicate the melody. Elliot was 5th or 6th in the lineup. When it was his turn, the whole camp started chanting, "Go, Elliot, Go! Go Elliot GO!" Elliot took the stage, and after a few notes, called up a little girl to come help him. She jumped up enthusiastically, and together they played. At lunch time, a couple of friends assisted Elliot in opening his containers and those tricky bags of goodies. At transitions, routines, there was a friend to give a hand...not too much assistance, but just what Elliot needed to stay on task, and do what he had to do.

At the end of each day, there were children calling out, giving hugs, saying, "See you tomorrow, Elliot." What was going on here?

Then, there was the Saturday performance. The children would bring their decorated parasols and self-screened t-shirts to Ashe cultural center where they would participate in a recognition of the Middle Passage as part of a city-wide drumming experience (wow!). I was nervous to leave Elliot there an hour and a half before the performance. So much waiting for him. Would he wander away, as he does so skillfully? Would he have a diaper? As performance time grew near, we returned to see, and from downstairs, I saw him try to sneak down the stairs, and then I saw Mr. Seguenon scoop him off the stairs, hold him close, and dance with him around the upstairs...Elliot smiling from ear to ear. Another time, a group of kids sat on the stairs to block him in. He eventually gave up and sat behind them. When they were about to walk down the stairs with their parasols, I nervously imagined him tumbling down the long flight (he couldn't walk down while holding that in one hand!)...and then there was his teacher, holding his hand. Calm down, Emmy. They've got him figured out. (And yes, if it sounds like I could use a vacation, you're right!).

The group second lined and drummed their way on stage, and there they sang, danced, and drummed. At each bit, there was a child to remind Elliot of the move, help him get the cues, shoo him off the stage...twice, I saw him wander from back stage, and they got him each time. It was a dramatically different Elliot than we saw at his first kinder-performance during which he simply sat on the stage staring out...quite shocked that there were now lots of people there staring at him. This time, he worked to do what he was supposed to do, and there were a village of people there to help.

The kids took a bow, and we thought it was over. A man made an announcement, and the kids were filing out. And then, there was Elliot, sneaking away from the group, and he had taken the microphone out of the man's hands.

"Wait, Everyone. Wait, Everyone. You have to listen," Elliot said in a demanding voice, with his mouth too close to the microphone. Kevin and I were surprised, our recording devices down at our sides. I could see the man looking confused and trying to make a plan to get his microphone back. He then made a decision, and picked Elliot up, and put him in the center of the small stage. "Listen. Everyone." The crowd of 250+ grew silent. "I LOVE YOU. Thank you for coming." And with that, he turned the microphone back over, and walked off-stage.

Off course, we sappy parents let the tears that had been threatening all day come, and shook our heads. What love our son had been given, and what love he had given so freely. I could see that he had received so much love, guidance and acceptance, but also that the children had been given the opportunity to lead, to encourage, to assist, and like all of us, to admire the tenacity of this little boy who has to work just a little bit harder to do the things we take for granted. They were as grateful to him, as we were to them. He had contributed to their wonderful summer. And Elliot had felt it. And had to let them know. He had an amazing experience, and it had shaped him, given him all the things I'd wanted for his summer.

On the way out, there were photos...one girl, about 12 years old, saw Elliot taking a picture with a little boy and said, "You get to take a picture with Elliot. No Fair." We shooed her into the photo. Here, he wasn't ignored, bullied, shunned, dismissed...he was really seen for who he is--a highly social, loving friend. It was so beautiful.

It goes without saying, we've withdrawn Elliot from the last two weeks of his other camp. I don't know what we will do, and I don't care. Hopefully they will refund us some money, but I don't care. There is no added value with him at that camp.

Here's what worked about his Kids Play experience:

Small size. I imagine there were 40 kids from 5-12 in the camp total.
Selective admission--the camp has an admissions process where children have to answer several questions as part of being a part of the camp; they also have to sign a code of conduct. But these kids were just great kids. They live that code of conduct each day. Kevin says, "These are the best kids in the city."
Exceptional staff--I can imagine that the attitude of the staff modeled so beautifully how to help Elliot, but not so much. These are folks who really saw Elliot in totality.
Mixed ages--Again, another opportunity for modeling. Elliot has been in inclusive settings before. At Abeona House, Elliot was the only child with special needs in the group most of the time. His peers treated him as they treated the other children. This is what we saw at the camp, with the added piece of the much older children who would model acceptance and compassion in a very powerful way.
A relationship--it's a good thing we knew Dana from before the camp experience. I think this is why he was accepted, and why we could also communicate openly about our concerns.
It's FREE? Is that crazy? Guest artists each day, amazing drums, exceptional staff...I would pay a premium for this, but through funding from a host of foundations (Arts Council, Keller Family Foundation, etc.) it is a free camp. I have to admit, I wasn't sure this would be a quality experience because we weren't paying for it, but I was SO wrong!

We have NO plan for Elliot for the rest of the summer, but if two weeks of Kids Play is all his summer is--it's just fine with me.

**
Now for Mommy's challenge-
To parents of typically developing children: Don't you want your child to have a diverse experience that includes children with disabilities? Do you see what children like Elliot can add? Ask your child's camp about their policies relative to children with disabilities, and ask every time. Tell them you'd like to see more. YOU drive the market.

To NOLA summer camps: Make a committment to these children. If you don't have children with special needs in your programs, you aren't serving the community.

To NOLA funders: Demand inclusion of the programs you fund. There are no choices for parents of children with disabilities, especially if potty-training is an issue. Small accommodations can be made to give these children a rich, powerful summer full of friends and learning. They deserve it.

A Shining Light

2011-02-25T23:08:00.000-08:00

I found out this week that an amazing little person passed from this life.

He was born with a virus known as Congenital Cytomegalovirus (CMV).
He wore glasses.
He cheered on his favorite rugby team, THE SAINTS.
His name was Elliott.
He was 4 years old.

Even though he lived in Liverpool, I felt connected to this kid. For obvious reasons.

I'm sorry I never got to meet the sweet little guy, but I feel like I loved him.

And you can see that his life was full of love. And that love was inspiring. I enjoyed meeting Elliot through the Christmas videos like this one, that Elliott's devoted dad would post each year.

He was a shining light, and now Elliott is an angel, watching over his family and our special children who fight so hard to do what we take for granted. God bless you, Chris. Our thoughts and prayers are with you.

Reflections from Ana during a morning bike ride

2011-02-20T09:37:00.000-08:00

A special treat--just time with Ana and me. We rode from our house to the fly.

Me: Ana, how are you feeling?
Ana: I feel great. I feel really good about me. And you.

**

Mom, I don't get it. Where does space end? Sometimes I dream of outerspace, and I'm talking to these wierd people, but we're really
in a box, and around us, there is nothing but white.

**

I wish the bike path never ended...I could ride on and on forever.

**

Simple things

2010-10-07T15:41:00.000-07:00

We are borrowing one of my parents' cars right now for yet another repair on the Volvo.
This morning, when I drove away from my home on my way to work, I enjoyed the sounds of
a tape in the deck...maybe Enrique Chia's clangy pounding that manages to sound romantic on the piano.
Sounds I'll always associate with my dad. And I was thinking of how hard it is to connect with him,
how he doesn't engage, how difficult it will be to let go of that opportunity when he is no longer here...

Then the tape was broken with the sound of my father, speaking in a voice more sweetly than I knew
he possessed. And he was repeating a name that's burned on a part of my broken heart...

Galito? Galito?

The voice repeats perhaps 20 times, sweetly, softly and searching...and then just for a second, I hear my brother's
adult voice in the background, saying something inaudible. Then another song cuts in...I felt like I'd been touched from
some other world, or that there was some parralel universe where my father and brother shared only soft voices,
tender moments and Enrique Chia.

I wondered how often my father listened to this tape, and if he fast-forwarded through the music just to hear the quick
unintelligible mutterances of my long-gone brother...his only son whose name is written all over his broken heart, and I thought of my
sweet children and their tender voices, and how precious we all are to somebody. We miss you, Galito.

Oliver turns two

2010-09-18T18:51:00.000-07:00

My little baby bunting,
all roundness and sweet,
full of mischief and sugar...

There you are, two. No longer a baby.
But still, only two.

You love babies and baby dolls,
wrestling and trucks.
You won't sit still to eat,
but love to hug and love.
You'll clean up a mess as quickly as you'll make a glorious one.
You hold my finger as we walk down the street,
then royally rebel when I try to put you in a seat.

You're adventurous when sure of your abilities,
but tend toward caution. You can sit with a task that
interests you for long periods of time, flipping through a book,
putting objects in tiny containers, figuring out how to build.
You love telling us to "Stop" "Wait" "Shhh"...
You're speaking in long sentences, "Tomorrow, I'm bringing Mama to the airport."

You love chupaletas, baleadas, and things you really shouldn't eat or drink at age two, like sips of
soda or hot tea.

You love people, but aren't necessarily Mr. Social.
Your best friend is Evan,
your hero is Elliot,
and Ana is your little Mama.
Georgia is "the one who loves you."
Tita is your Juliet.

Holding you, squeezing you, snuggling you
calms me, fills me up. The shape of your cheek,
your still curly ear, your round delicious bottom,
or rolly thighs and tummy are so beautiful. Each of your curly ringlets
holds one of my heartstrings. You are a cherub, and the sight of you
takes my breath away.

I'm so lucky to be your mama, And you, you'll always be my baby.

What matters most

2010-08-17T20:09:00.000-07:00

This has always been one of my favorite William Carlos Williams poems (although I also love '13 ways of Looking at a Blackbird.')--
Both reflect on perspective. This one elevates the simple to the extraordinary, something I'd like to do if there were less noise in my head.

Poem #83- The Red Wheelbarrow

so much depends

upon

a red wheel

barrow

glazed with rain

water

beside the white

chickens.

-- William Carlos Williams

Elliot is FIVE.

2010-08-02T20:21:00.000-07:00

My little hurricane babe,

Watch out for the rain...

the forecast is bad,

dire they say--

doom and gloom,

doom and gloom.

Devastation,

life will never be the same.

Just try to pretend

that it's all normal, sane, whole.

Day by day,

hope upon hope,

rays of light from your

roving eyes,

with optimism gripped

in your left fist,

Don't you dare f-ing count me out.

I am here.

I am.

I can.

My lover boy,

my smiling fighter,

you pulled us out

from the wreckage of our fears,

and showed us the promise

of determination.

One rainbow at a time,

you showed us

new colors

that other eyes could not see,

we heard new music

in the stale everydayness of the grind of this world,

the dirge became

a second-line

of love and joy--

a long line

of people

with you at the helm,

leading us to

the promise land.

The promise land which is You...the fulfillment of the promise of you.

Elliot.

You glorious, glorious boy.

Thank you.

Please note the date: April 19, 2010

2010-05-12T16:05:00.000-07:00

On this day, I was actually able to SIT in the FRONT yard for a period of 20 minutes.

I believe it has been 3 years (THREE YEARS) since I've sat in the front yard, with children, without being hot on their heels.

More specifically, being hot on Elliot's heels, as he tears up the sidewalk, going exactly where we tell him not to go, or running toward the street, or our neighbor's front porch. It's a long road, but some things get easier (as others' get harder?). I'm relieved. And looking forward to fewer limitations to the places we'll go.

Now granted, since then, we've seen many more moments of the same flight risk behavior, too many times. But I see the silver lining and it's liberating.

Playin' Hookie

2010-04-24T18:33:00.000-07:00

With my best girl, and my hubby for the first half of the first day of Jazzfest 2010, we discover:

Big fancy camera in the hands of a careful child are all that you need to listen to a few good hours of music under the tent. Not one, "I'm bored, mama!"
Scatting on stage is not just for grown-ups. Ana was throwin' down with Kat!
Rain and permission to splash in it are all that a 6 year-old adventurer need for a successful day.
Chill out food for kids: fried chicken, Isabel's recommendation. Counter acts the gelato, mango freeze, snowballs.
An amazing new kids area. Kid-friendly foods, great entertainment, wonderful crafts, beautiful artwork from kids...Happy there for an hour or two.
Soft shell crab and Cochon de lait have a new accompaniment: quail, pheasant and andoille gumbo...how have I missed you this long?
One-on-one time with my any of my kids always feels special.

First Crush?

2010-04-14T18:47:00.000-07:00

Ana says to me tonight, eyes gleaming with a well-guarded secret:
I have a friend named Michael at school. If I tell you something about him, will you promise not to laugh?

With a solid, steely eye, I tell her:
I promise, I won't laugh.

With caution but overwhelming excitement (beans spilling):
You promise, promise??? You won't tell OR laugh??

Eyebrows raised, my most excellent promise:
I promise, promise. I PINKY promise.

We lock our pinkies, staring into each other's eyes.

Mama, my friend Michael at school, I think he's really....

I think he's really...
(how does one speak the unspeakable?)

He's really.....PEACEFUL.

__

Well, my dear, I clearly did tell-- all of these people in cyberspace, but it's not the secret, or Michael we're smiling about. It's you, and the way your amazing mind and sweet heart work.

Elliot on the move

2010-04-10T21:57:00.000-07:00

We're trying hard to keep up with you these days.

Each day, a new thing, a new way of asking, a new challenge in behavior...

what's the same: tenderness.

If I didn't know better, I'd think you were responsible for birdsong in the morning.

Your sweet heart is such a gift, Elliot! Thank you.

Rising and Shining and bad poetry.

2010-04-10T21:54:00.000-07:00

Beautiful, beautiful boy.

We're twisted in each of your dark, sweet curls.

Each word, phrase, look, pout

turns us inside out!

Oliver, my baby.

Each day with you is a joy.

Sweet Tooth

2010-04-10T21:49:00.000-07:00

This one we named Mr. Wiggles. He'd been loose for two months!

You're so proud when they fall out!

Number two came out 6 days later! The Tooth Fairy Comes Tonight again!

Your tooth falling out are so special to me. Not for the reasons of First Grade Readiness, as Gertrude Steiner of Waldorf fame might suggest...It excites me to see you growing with such obvious indicators. Your sweet baby teeth being pushed out of the way. You're in those in-betweens, and your adult teeth that have come in look large and awkward in your mouth..there are so many awkward changes coming in our years together. When I look at your face, though, it's those eyes that are the same...the same baby eyes that first met mine. I love you, my sweet girl. That's a constant you can always rely on through all these changes.

Taking Pulse

2010-03-31T20:09:00.000-07:00

And because I have 200 pictures on my new camera, just waiting for me to learn...the pics will have to wait.

Oliver at 18 months~

parroting our words and actions, trilling his "Rrrrrrs," competing for affection "I love you. NO I love you;"
curly-haired sweetness that's threatening a mullet.
teething and then some more teething. You've got a nice, shiny white set of teeth!
enjoying strawberries and cream so very much, but playing with and destroying nearly everything else.
down three pounds to an even 30.
sticking out that bottom lip into a pout. Gwen says that's something I do. Now I notice it all the time.
cell phone chatterbox
My favorite: when you put a purse on your arm and say, "Bye, bye."
Least favorite: the tackle at the knees move whenever I'm moving around too much and not picking you up.
Stand-out features: sweet eyes, chubby cheeks, awesomely juicy but, and bowed legs like your grandpa!

Elliot at 4.5 years~

Dr. Who, What, When--you what to know WHY for everything, and end each question with a second "Why?" as in, "Why do you need to go to work, Why?
Nascar racer in training- you ask what kind of car each car is, then try to spell it by finding the name on the car, you read out license numbers, and ask how each car is driven (you know that you use your legs, hands and eyes...our new standard answer). Your favorite movie, pjs, etc is CARS, and I made the mistake of letting you drive on my lap from the driveway to the front of the house. I fear the day you find keys while unattended..
Trying all kinds of gross motor stunts...new favorite is getting on the roof of the toy house...you can't quite make it yourself, but want us to hoist you up there...just like your sister.
In love with Rescue Heroes, and filled with intrigue for fire fighters, paramedics, and police men!
Super snuggler with mom. You're having a hard time sleeping, so we're thick as theives into the night, you and me.
adversarial for its own sake...If I say, "I'm tired." You'll argue with me that I am not...and it is this way for almost everything!
Love your days of the week and year, know your letters (Big and Baby letters), and numbers and want to know what everything says...
My favorite: when you stroke the hair at the nape of my neck with so much tenderness
least favorite: flight risk! You're too fast! (I know this is a blessing, but it wears me out!!)

Ana at 6.25 years~

Daydreaming, and getting "in trouble" at school for not working on your letter book. I really should be more concerned (?) but I"m not;
Excited by every factoid you've learned, and frustrated when I already know what you want to reveal...I have to do a better job of playing dumb. Soon, you'll learn that mom is a generalist...
Into building fairy houses and drawing princesses in elaborate gowns with great details
questioning the magical world...are werewolves real??
saying things like, "Mom, won't it be fun to decorate my apartment when I'm a grownup," and planning all the animals you'll have (since we can't have any with me....)
Big momma to the little boys
Crazy about CD lunches. I'm growing tired of our comparisons. Who ever knew I'd be competing with "school lunch??"
Little me. Loving connections with people, excited about sharing our lives with others, eager to help, stubborn, impatient, hot-headed...the very best and worst connect us.
favorite: Mr. Wiggles, your front tooth that's been hanging on for 3 months now, is turning blue! We call it your Tiny Tusk, and you push it out past your lips like a walrus.
Lease favorite: notes about your distractibility at school. I don't know whether to lecture you, or agree that the worksheet you spaced out on was boring.

Emmy at 35~

Every day working towards my happiness and potential.
Favorite: watching my hard work come together right now is validating.
Least favorite: Anxiety...need to let go of worry. SO unproductive.

Kevin at 51 (!)~

Making big strides to align work and happiness.
Favorite: Backyard family time
least favorite: Fear. I wish you believed in you like I do(-: Amazing things are coming our way, my love.

Which is more beautiful?

2010-03-27T06:49:00.000-07:00

Watching Elliot do his next amazing thing?
Or listening to his sister, Ana, gush with pride over him?

Abeona House

2010-03-15T07:23:00.000-07:00

As many of you know, I work directing a non-profit childcare center on Oak Street called the Abeona House. And I'm run/walking in the Reggio Run, 10K for this place I believe in so much.

If you've known me for a long time, you've seen my work in education swing dramatically, after many years teaching 8th grade language arts in New Orleans' public schools. I can't say that I didn't confuse a few colleagues and friends with my choice to work with little ones...from adolescence to infants and preschoolers! I don't know if I've ever been able to explain what this place has given me.

I took this job in early 2006 to help these parents open this center. I took the job because "I knew I could do it." My motivator for choosing this work was my son Elliot. Diagnosed with congenital CMV at 4 months, his life at the time was a whirlwind of therapy and specialists' appointments. How could I bring in income but still know what he needed? I honestly had no idea what kind of community I was joining with Abeona House. Each day provided me with a reason I could not have forseen.

First, there are the parents. I was "hired" 7 months before we opened. I wasn't sure if this whole thing was going to pan out. Would this place ever open? Did these people know how to navigate the city's bureaucracy, even more damaged after the storm? But then I'd show up at a work day, and see moms with small children crouched at their sides holding toy tools hanging sheetrock, or painting. And dads installing plumbing, nailing up boards on the porch, and moving in loads of donated furnishings from garage sales. I wasn't really the director. I was a participant being carried by a wave of good works, by these great people who were so determined, you couldn't help but want to help by meeting them, or observing them.

One parent in particular enlisted me in her pursuit to navigate the many licensing agencies and inspections. The hoops we had to jump through! Here are a few highlights:
-we didn't have offstreet parking; waiting for our waiver could have delayed our opening by another 6-12 months! We rented a parking space at a nearby lot and painted a wheelchair on it.
-the state fire marshall and city health inspector wanted oppposite things for our bathroom door. So for the health inspector, we installed an automatic door closer. For the SFM, we put it back up.
-our application for a designated drop off zone was brought to City Hall. At the same time as Donald Trump's (failed?) CBD plans. Needless to say, the documents so painstakingly created, were lost.

I know it's not the most interesting reading, but these little challenges greeted us each day. Just the creation of the ramp, the $20,000 ramp, was a make-or-break decision. Will we be able to pull this together? We've already tapped out loans from families...

So it seems like a small miracle to me, each day that I walk up any of my children up that ramp. Somehow we managed to do it. To open this place.

Our parents continue to work in the creation and growing of Abeona House. After 3-and-a-half long years, we finally repaid the $60K in interest-bearing debt we acquired in opening this place, and now, we can begin paying back our community lenders who believed so much in what we are doing here. And still we continue to grow.

But it's what happens inside that makes Abeona House unique in the world:

These teachers love children, and value their ideas. This is obvious from each greeting, project display, or discussion about where a project should go. This is no accident. The Reggio Emilia approach, that inspires our work, espouses that children are collaborators in their own learning. Teachers are to be responsive to their verbal and non-verbal curiosities; pay attention to the interests emerging in their play, and document through cameras, paper and pencil, video and audio recorders, the great richness that comes from dialogue. As an educator, I can say that I always loved children and valued their ideas. But their ideas were separate from what happened in my classroom. My classroom (my classroom, not ours) was about what I needed them to learn, not what motivated them as learners, as people, or as growing adults. Working in the Reggio Emilia approach has completely changed my view of the teacher. I will never work with children in the same way again.
It's full-inclusion at it's best. Once I met Elliot's teacher, Ms. Gwen, I knew that she was why I was here. Her infusion of his therapies into every day routines, all with copious amounts of love and humor, showed me that my life didn't have to be defined by Elliot's disability. My work was to find others who would see the many contributions he makes, and find ways to support his growth. I know that any child who comes through our doors will thrive.
These parents truly value teachers. I can't tell you how refreshing it is to see authentic communication between teachers and parents. I continue to strive for this with my oldest two, as they enter "big school." It's a rare and beautiful thing.
Children love to be here. They know their feelings are important, their wonderment is a gift, and that this place is theirs. They work collaboratively, value empathy, and nurture good ideas. I look at them and wonder, with all of these tools, with all of this love, what will they do? And it teaches me the potential of this style of learning: If all children were taught that their ideas had value, that schools are places that untap the potential of their uniqueness, what would our world be? This is my daily work.

I work not only to make this place an amazing model of high quality early childhood education, I believe my work is also showing why we should do things this way. One walk through Abeona House will show you why. You are all welcome.

This month alone, we will host 20 educators who want to learn more about our work with children.
In two months, we will participate in a major educational symposium with the Louisiana Children's Museuem, and visitors from Harvard University and Tufts, as well as local lawmakers. It's so easy to get caught up in the quantitative values of ed...our work seeks to show them the potential of a qualitative focus.

There are a million reasons you should support Abeona House, and me, in the Reggio Run: our sliding fee scale, our health insurance plan for teachers (so rare in this field), and you can read more for yourself. I hope while you're visiting the site, you'll click on the Donate Now button, and support our work, and our growth.

And sorry for the shameless self-promotion, but if you do donate, please note that you are supporting Emmy in the Reggio Run. Thank you for reading.

Discussion worth lifting from Facebook

2010-03-02T10:51:00.000-08:00

Hide

Janelle Sargent Greenlee Question: After a week straight up with Bunny all night, I have to ask my CMV parents...those of you with CMV sleep issues, what do they look like? Neither of my girls have ever had them, but as I rule things out, I just want to hear how your child acts during the night when they have sleep issues...Help :)

about an hour ago · Comment ·

Dawn Patterson

James is 2.5 and has never slept. We are finally on the list for a sleep study. I think he has sleep apnea. No meds have worked for him yet. He wakes up repeatedly during the night with a jerk and gasping, followed by crying I hope you get some sleep soon! No sleep sucks - I am a walking zombie!

about an hour ago

Lori Tuck Ewing

Audrey just doesn't sleep. She will lay in bed and kick her feet for 6 or 7 hours without ever falling asleep unless she has her melatonin. She is also very restless in sleep. We've never had problems with apnea or seizures, but falling asleep is a huge issue for us. Before melatonin, 3 hours of sleep was a good night...now we get at least 6. Our only problem now is that if she wakes up, she'll almost never go back to sleep - even if its the middle of the night.

about an hour ago

Janett Lynch-Craft

my son will be 10 next saturday, he takes clonidine, and we still have issues with him going to sleep...there are times he wakes up in the middle of the night. then there are times he goes straight to sleep, and doenst want to wake up in the morning! he used to sleep with us, finally got him out of that, but he would constantly kick us, pull our hair, inter-twine his legs with mine.

about an hour ago

Lacey McCauley

Leah who is 2 goes to sleep easily around 1030 every night but by 2 or 3 she is up for the night or at least until 7 or 8 in the morning. She takes no nap during the day either. Leah however plays in her crib and just laughs and plays. I will lay awake for hours just listening to her play. She doesn't want out and she doesn't cry. I think she ... See Moreactually enjoys the time to her self. Lol I think so far I have been pretty lucky with her sleep issues. Maybe try keeping her up late and see what happens. Good luck!

about an hour ago

Janelle Sargent Greenlee

In 6 years, I've never had ANY sleep problems with her. She's slept like a log since she came home from the hospital...I can't tell if it's something underlying or an emerging sleep issue in general...time to rule things out...

about an hour ago

Lacey McCauley

Hmmm well good luck. Hopefully you can all get some sleep soon.

about an hour ago

Mary Peters King

Katie's sleep issues come and go. On the nights she can't sleep we keep the tv on with closed caption. We have always had a night time routine and try not to stray from it. If she gets into bed past her regular time it seems she is just unable to go to sleep. She says her legs twitch. It is better now that she is almost 10 but when she was younger we had a many a night where we didn't sleep. She may go for a few weeks with no issues and then several nights in a row unable to sleep.

59 minutes ago

Christy Cothron

Zach has always had trouble going to sleep and staying asleep. When he was 5 we did a sleep study and he has restless legs but they didn't really find anything else. We do now take atarax to help him get to sleep and stay asleep but we only started that at about 6 1/2. He still has times where it's VERY hard for him to go to sleep, his legs will... See More bother him or he just plain lays there and doesn't go to sleep....it's pitiful...he'll say, "Mama, my legs won't stop moving"...so most of it is the restless legs, but also some sensory integration issues too....maybe as Bunny is growing and maturing she's more aware of surroundings and it's effecting her sleep pattern, you know how she's interpreting things around her, maybe she's thinking about her day and it's keeping her up ????

55 minutes ago

Erica Diane Layne

Gangsta bunny...enough said!

50 minutes ago

Janelle Sargent Greenlee

Don't encourage her, Erica.

47 minutes ago

Crystal Thomas

Trenton is in bed between 8 and 8:30 and usually does't fall asleep till 10 or 11 and is back up at 6:30 or 7. He usually wakes up 2 to 4 times a night. This is on a good night. lol

38 minutes ago

Cassidy Bamforth

sadly Janelle, i cant help either. georgie slept fine i have to say.

34 minutes ago

Lori Look Grant

We have also had sleep issues with Lexie. She either won't go to sleep or will fall asleep and then wake up in the early morning hours and stay awake. We have now trained her to stay in her room when when wakes up, but in the past she would come out of the room and get into the kitchen and frig and has broke bottles of sauces, etc. One time it ... See Morewas BBQ sauce and she cut her foot on the glass. We have since locked up the kitchen and frig at night to prevent this if she does get out. It's another reason why we don't like to travel with her or visit family because she keeps us all up! At least at home she is contained in her room. The other issue is that when she stays up playing all night she falls asleep at school. She will take naps at school daily. When she sleeps it is very deep and you can't wake her easily. She never seems to sleep more than 4 hr at a time. We have used melatonin and clonadine in the past but nothing worked. Now we just let her have her own schedule because that's just the way her body works. We're tired of fighting it!

34 minutes ago

Stacey Gier Halbgewachs

Braydon is on an extremely strict bedtime schedule. Bath @ 7, Blues Clues then read a story @ 7:30, in bed with his mickey mouse and seahorse and blanket 8. he will lay in there and talk to mickey mouse until 10 or 11 then is asleep until 6:30 or 7 the next morning. I have had to fight to get to this point... and it was not Braydon that I was ... See Morefighting... it was Daddy! But now that we are on the strict schedule Jon is seeing that it is making a HUGE difference. Braydon still has nights that sleep just won't come and so we sit in the glider and he sings to me while I sleep! I do know that when he goes to his grandparents for the weekend that he does not sleep for them... but they also don't follow the schedule... they are super great but just don't get it! They see how "normal" Braydon is and have basically written off the CMV. This again is another issue that I am fighting. I see how Braydon compensates when he can't do something the same way his brothers can. We have never used any type of medicine to help Braydon sleep... we just roll with it and hope that I am able to get in a nap the next day!

17 minutes ago

Michelle Belanger Van Meter

Abby (almost 3) gets in bed at around 8 PM and we have to lie with her until she falls asleep - can be minutes or hours(usually by 10 she is sleeping); she usually wakes up 1-2 times at night for us to change her position - she tries to roll the best she can but gets caught in the sheet/blankets.

12 minutes ago

Michelle Belanger Van Meter

I should also add that we did have increased sleeping problems, where she was constatly awake/upset/thrashing, just prior to her having her 1st seizure - in hindsight, we think she may have been having some small seizures; after her 2nd seizure, she was put on meds and had a sleep study which showed abnormal electrical activity in the brain, but the Keppra was preventing these from becoming a seizure...

9 minutes ago

Discussion worth lifting from Facebook

2010-03-02T10:50:00.001-08:00

11 people like this.

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Janelle Sargent Greenlee Question: After a week straight up with Bunny all night, I have to ask my CMV parents...those of you with CMV sleep issues, what do they look like? Neither of my girls have ever had them, but as I rule things out, I just want to hear how your child acts during the night when they have sleep issues...Help :)

about an hour ago · Comment ·

about an hour ago

about an hour ago

about an hour ago

about an hour ago

Janelle Sargent Greenlee

about an hour ago

Lacey McCauley

Hmmm well good luck. Hopefully you can all get some sleep soon.

about an hour ago

Mary Peters King

59 minutes ago

Christy Cothron

55 minutes ago

Erica Diane Layne

Gangsta bunny...enough said!

50 minutes ago

Janelle Sargent Greenlee

Don't encourage her, Erica.

47 minutes ago

Crystal Thomas

Trenton is in bed between 8 and 8:30 and usually does't fall asleep till 10 or 11 and is back up at 6:30 or 7. He usually wakes up 2 to 4 times a night. This is on a good night. lol

38 minutes ago

Cassidy Bamforth

sadly Janelle, i cant help either. georgie slept fine i have to say.

34 minutes ago

Lori Look Grant

34 minutes ago

Stacey Gier Halbgewachs

17 minutes ago

Michelle Belanger Van Meter

12 minutes ago

Michelle Belanger Van Meter

9 minutes ago

Thank You, Boys!

2010-02-06T03:40:00.000-08:00

Tomorrow is the BIG GAME. I don't think I've ever used those words together.

My passion for Saints football is not unique these days. Everyone in this city is abuzz. "Who Dats" permeate long lines of strangers in grocery stores, and we are awash in black and gold, with fleur de lis identifying us as members of the Nation of Maniacs.

Truth be told, we are bursting with joy, and in a city that has had its heart so terribly broken, and lost so much in the last 4 years, we are grateful for this beautiful, crazy ride that connects us around happiness, shared love, and excitement.

In a place with a deep divide of class and economics, there is this bridge of brotherhood, as we honk at each other in traffic, or exchange a hug simply because we have so much joy to give away.

I'm full of gratitude for our Boys in Black and Gold. They have brought us together in a way that nothing else could, and reminded us that through determination, ANYTHING is possible. Even in this town. Especially in this town.

And as for this, from one of the Colts' twitter feeds, I think it's an accurate analogy.

Katrina knocked us down, but we're up, and we're fighting, and we shine. Get ready.

How many hoops?

2010-02-01T10:47:00.000-08:00

At this time last year, I was waiting to hear whether my daughter would be accepted to a local private school. I'd found the process grueling: Open Houses first...which school is the right fit??? Then, Psychological Testing (yes, for five year-olds), Play Dates, Site Visits, Financial Aid Applications, Financial Aid Awards, Deposits...how silly I was to gripe about any of it. The process was so clear, the steps so nicely presented in a bulleted list...she's now on auto-pilot, and I imagine we won't have to really pay attention until it's time for College Applications, or if we decide to change schools mid-stream..

My son Elliot's journey, well, that's where we've earned our stripes as parents. After he was born with congential CMV, we were given a list of resources, including Medicaid, Social Security, and Early Steps. We aren't eligible for the first (even under the new earning guidelines), never pursued the second, and felt saved by the third. We should have done more through Medicaid at this point...keep reading. Through Early Steps, a host of therapists came into our home and later, his childcare to teach us all how to best help him. It was a godsend, and shaped our parenting so dramatically. Unfortunately this service ends when the child 3. So what then?

Public schools don't have 3 year-old programs. If your child is 3 yo, you can bring him to public school to receive this services, then bring him home/childcare. Your other options are private therapy, or if you're lucky enough to qualify and high enough on the wait list, Children's Hospital has therapy services and offers assistance to cover the cost. Orleans parish is just getting back up to speed, and is able to send teachers to your child's center. However, we reside in one parish (Jeff) and Elliot's childcare was in the other (Orleans) so Homebound wasn't an option for us. You can trust that your childcare center can use modifications and interventions. But truthfully, there's not enough education and training for these dedicated professionals to be able to fully understand the scope of many disabilities, and implement what's most helpful. And frankly, that's true of most certified teachers in this state. To get your child's needs met, most families create weekly schedules that are more complex than Sean Payton's best plays.

Elliot's 3 year of life and therapy looked something like this:

Ok-today is Tuesday? You go there, and he goes here, and at 10 oclock bring him here and then this afternoon, we'll pick up him and her and go there. Got it?? BREAK!

This included childcare at Abeona House, 2-3 mornings at Bright School, 2 afternoons at Children's Hospital, 1 monthly visit at Crane Rehab, and 6 specialist visits sprinkled throughout...all while we were pregnant with bundle of joy number three!

Can we meet you for a playdate, or soccer or gymnastics? Um, not likely.

You can see why we were looking forward to having a comprehensive therapy plan through the public school system when Elliot turned 4. This process was no cake walk either. First there was the Eval at the district office. This whole process was rather frustrating. One tester seemed exasperated with Elliot's distractability with her test questions (and my own guffawing)...after 2 hours of testing, lady. He's 3 and a half!

We were then given the option to have him in a half-day program for children with special needs. This half-day program idea is ridiculous. Who are these people who can do this? And does it really benefit the child? Even though the school program seemed wonderful, we opted out of this because it meant more days that look like the diagram above. Elliot spent another year in childcare with loving teachers and lots of play. Therapies too.

We put-off a lot of school searching with Elliot's participation in Abeona House. I can't imagine looking for suitable childcare for a tiny baby with special needs. This network of support and knowledge was critical in his development, and mine.

So when we were done there, the big world was waiting. And as I just got off the phone and learned even more about services for the disabled, I don't know if we'll ever know enough. There always seems to be another hoop to jump through.

In year 4, it was Pre-K 4 & THE IEP. The Individual Education Plan is where you explain what supports your child will need to be most successful in the least restrictive environment. It's where you think throughou how your child communicates, eats, pottys, learns, etc. Note to parents- You have to know your kid, and what works for him/her and include it all in your IEP. If your child has sensory issues and is adverse to certain kinds of toilet paper, include it.

The caveat: Public Schools only provide therapy and interventions that will help the child function within the school system. If he/she is lacking a skill that doesn't affect his functionality at school, it's incumbent on the parent to seek private therapy.

We haven't had a great experience with our child in the public school system. The absolute worst of it was my son telling me as he snuggled next to me at bedtime that his teacher had hurt his arm. I made clear to his teacher that whatever had happened was not OK with me, or with him. Mostly, I was grateful that I have a child that can communicate to me. I also wondered, and continue to wonder, how many times in this process will I feel like I'm playing a game with the system, with my son's teachers, as I dance between getting him what he needs and not pissing too many people off?

The good news, though, is that Elliot is in a typical classroom, with an aide who assists 2 other children and him. This is really the optimal learning set-up for him. However, the school's Special Ed kindergarten is a joke: kids are in the pre-K building, and "Go over for inclusion (groan) once a day, unless it's raining." The SPED kinder is a mixed-age group of kids 3-6. NOT FOR EL.

So what are our choices as we look at kindergarten? This question has led me on this year's journey of disappointment, frustration, and new insights. If sharing can spare you any agony, please read on:

-Public Schools: Just because public schools are legally required to serve your child, don't be lulled into false complacency-this is still a system that needs to be navigated, and like most anything, the squeeky wheel gets the services, or something like that.

Befriend someone on the inside...an administrator who can look at the system objectively, help you navigate the inner workings, and connect you (or give you the names) of the people you need to talk to.
Ask for what you want, or find out what you need to do to get it. I know Elliot thrives in an inclusive environment. I'll ask how this can happen in his district school, his Pre-K 4 school, and other schools 100 different ways to everyone I talk to. Each conversation yields some bit of info.
Don't foget advocacy groups: Families Helping Families will connect you with a lawyer for your IEP meeting if you're meeting resistence in having your child's needs met.
Start asking questions for the next year right after Christmas. That's when schools are in the planning and staffing stages...if you wait too late, your child and his needs won't go into the planning.
Kindergarten Special Ed programs are not in every school. Find out where these are to begin your search. If you want an inclusive program, you probably still want access to SPED services...
Talk to parents. Any time I see a parent with a disabled child, no matter what age, we have a conversation.

Catholic Schools

I am pretty sure that Jesus would open his arms wide for my child, but no so at most Catholic schools, and even when they do, there are limitations.

Most that I have found don't serve SPED until 1st or 2nd grade, and even then, it's depending on the nature of the disability and how independently your child can function.
SPED usually means a resource room that assists children who are slower learners.
Many won't even accept children with 504 plans--plans ensuring minor modifications, like preferential seating.
The one or two that we have learned will take our child are loving environments but expect us to provide a child-specific aide. Tuition (w/ no financial aid) + aide = No Way.

Child-Specific Aides

You may be able to have one of these through your public school. Elliot currently is with a SPED aide in a typical classroom. I'm hoping he'll have one in 1st grade at his district school. (Erin, if you're reading this, any info you can add would be appreciated!)
If you participate in Children's Choice (also known as the New Opportunities Waiver), you can have a child-specific paid in part by the gov't and you at the school of your choice. The caveat: You should've applied for a Medicaid Waiver NINE YEARS AGO...like, before I was even thinking about getting married. It's worth getting on the list, though, I hear from a parent who has a Child-spec at a local Catholic school. To do so, your local office of disabilities will come down an eval and see if your child meets the criteria for the Medicaid Waiver, and will send the Statement of Approval to the Medicaid Waiver office who will contact you. If you participated in Early Steps, they will post-date your application (which will bump us up a few years). Read this, and weep, Republicans. I'm sure these are the services you're always trying to cut. Guess what? We need them all.
My friend's recommendation: child specific's will come through the agency. You probably won't like who they send out. She hired her person, and asked the agency to hire them too...they pay for this person together.

Private Schools

Like Catholic Schools, each of these vary, but for the most part, private schools have homogenous populations. Unless you have an older sibling participating in the school, you may not even have a serious conversation about whether your child can participate, as I found during my search for Ana's school last year. Even then, I'm imaginging these schools expecting you to provide a child-specific. The good news is many private schools offer financial aid. Again, no therapies are really available at private and parochial schools...you can't drop the ball on this.

What now?

We are most likely going to remain at H Park, but this crazy journey has helped me know that I need to write a letter requesting a child-specific in the typical classroom. If this idea is rejected, we will be somewhere else. Exactly where that would be, we don't know.

And before he starts wherever, there's a summer camp to find. *Sigh* It's exhausting, but what wouldn't we do for our guy? He deserves it all.

Prepare ye

2009-12-13T21:08:00.000-08:00

I went to the St. Agnes Christmas pagaent with Ana the other night. As we parked, I asked a passer-by if it was in the church (I saw so many students entering the gym...had to be a staging area)...

As Ana and I walked, I explained the significance of the church...
how my parents had married there,
I'd been baptized, and received my first communion, and confessed my second-grade sins, and been confirmed as a Catholic...and as we walked over in the cold, I could hear the loud chords of my favorite song on our Friday school mass:

I know nothing of tomorrow.
Except the love of God.
Will Rise before the sun.
The love of God will rise before the Sun...

We entered (we were 30 minutes early), and there was a crowd gathered with a Wedding Expert explaining what would happen during the wedding ceremony that would happen a few days later. Ana didn't fully understand what was happening, and I wasn't going to fully explain. This Wedding Expert was all about her business, and I didn't want to disrupt. As she was explaining how hands and feet should be positioned (no crossing your feet! right hands over left!), Ana raised her eyebrows and guffawed, then crossed her ankles, making eye contact with me. What a rebel.

While we sat, I thought of you walking up the wide center aisle in the brown robe Tia Ella had sewn for you. You were such a handsome John the Baptist. I could hear your voice, and remembered you practicing for days. "Prepare ye the Way of the Lord." I thought of how I'd been in the choir, and always wanted to be Mary, or a sheep, or an angel...and you, who always felt like you were being looked at, were probably secretly horrified and surprised to have been chosen...how our roles changed as we grew...who might you have been had you not become sick? That's a futile exercise, I know. But I do this quite often.

You were so handsome then, and so whole, and happy. I'm still mystified that all of that changed, and we became strangers to you, only to find you again after you died.

All of those images of your death and the weeks prior have come back to me again. Even though Christmas with you in the last few years meant averting the crowd until time for presents, when you'd respond as excitedly as the children. And we'd breathe a sigh of relief if we managed to avoid an episode...those never seemed to happen at Christmas. You loved Christmas, and always bought Mara and Morgan gifts that I saw as extravagent, wasteful, and ridiculous. Why would you buy a $300 tricycle, then put your child in a car with a broken child seat? I hated that, and still resent those choices...and I know my judgements came between us so often.

Well, Ana and I waited...and waited...until I felt sure that we were in the wrong place. We finally found our way over to the GYM. How could they move the pagaent there, I don't know? But when I saw the cherubic and unsure John the Baptist walk up toward the stage, I was grateful. Grateful he wasn't tall and handsome with the booming voice you'd had as you sang up toward the alter...I don't know if I could've handled it with my sweet baby girl sitting on my lap.

Ana was confused about why I couldn't talk to Mr. Caire, whom I'd pointed to earlier as my favorite teacher. The last time I heard from him, he was signing your online obituary. I couldn't see him and NOT talk about you, even if he avoided the subject. When I told Ana that I just didn't want to talk about my sadness, not tonight, she seemed to understand...but she has asked so many questions since...like how did you become sick? How long were you sick? Am I still sad? Will I always be sad?

Losing you has hurt so badly, and I'm reminded of it each day. Mom and Dad are so tense and short with each other these days. Mom doesn't want to celebrate much, but she's finding her way. And I guess I just have to find my way...I keep thinking I'm moving to a healing place, and then find myself here again. I just loved you so much, Galito. More than you could ever know. I hope you've found some peace. It's the only thing that eases my mind. Rest in Peace. The rest of us are searching...searching for answers, and memories, and pieces of you wherever they might be. It's the opposite of peace.

Ana is SIX

2009-12-12T19:12:00.000-08:00

Now I am Six.
I'm as clever as clever.

I think I'll be Six now forever and ever.

-from The End by A.A. Milne

You on Being You:

3 words that describe you? Cute, smart, creative

What do you want to be when you grow up? An artist

What is your favorite thing about school? Recess and PMK

What can people do to make the world a better place? Pick up litter

Favorite color: pink

Favorite song: "Here in my House"

Favorite poem: "30 days" because it's easy; "Give me the Sun" (Whitman) because I just really love how the poet wrote the poem. It's really beautiful.

Favorite book: Fantastic Mr. Fox by Roald Dahl

Favorite animal: turtles

I'm good at paying attention and monkey bars.

Your teachers tell me you are a leader, a sought-after playmate, adept at interpreting complex passages of text, even to your 1st and 2nd grade classmates...and what makes me most proud: You are sunny, happy, and LOVE learning. A joy to teach. On the day of the Thanksgiving celebration, your teacher, who is not prone to sentimentality, squeezed my arm and said, "Thank you. THANK YOU. For Ana." Oh, if I could take credit for you...but you are just your own unique person. And to whom can I say Thank you. THANK YOU. for you?
My dear, you fascinate me. Each step of this journey, I see you making connections, forming questions, establishing your values, questioning what you've been told, striving to fit in, demanding justices big and small...all the while loving the tickles between your toes, the kisses on your kissing spots (don't call them moles, or you get REALLY mad), the beauty of language, and the joys of creating relationships. I watch you, and I wonder what you're thinking...and before I can get carried away by my thoughts, you mount the monkey bars and hang upside down and call to your friends down below, smiling with gummy holes. I can't help but tell you that you are lovely, lovely at least once a day, and that I love you, love you each time we meet or part. And while you are Oh So Six, and pushing limits, questioning, negotiating, fixating, and fitting, you are so remarkably kind, thoughtful, giving, and optimistic. I know that your heart will be your beacon, and guide you in tough spots. You are a champion of the underdog, and always expect and relish those happy endings...

You love making connections--studying Japan + Japanese strangers at Fulton Street =new friends (Mom, can we take a picture with them? They were such good sports!)

You love having your teeth fall out! Here you are minus two on the bottom row. You've lost the bottom two, and the front top ones are loose!!

Your brothers are your loves, driving you mad while being your best friends at the same time. Elliot and you play so nicely together...and when you thought a neighborhood boy was teasing him, he got your 6 year-old cold shoulder...even though he was 10. Oliver is your baby. You join Daddy and me in enjoying his silly moments, you save him from peril several times a day, and tickle his rolls while being swallowed up in his smile. You have so much love to give, and you love your family, and family life.

Is it too early to think about having "the talk?" and taking you to New York on a girls weekend? And wiping your tears when some jerk has broken your sweet heart? Yes, it is too early. I think I'll just log off this thing, and go kiss you on your tummy, while it's still the same color and softness of tortilla dough before we make baleadas. I'm in love with you. And while I can't believe you are that same little baby with a shock of black spikey hair who we fed from our finger those first few days, each day together feels like a part of that same crazy wonderful miracle. Thank you for just being you.

To Do Blogs

2009-12-12T06:16:00.001-08:00

Ana, my sweetheart--your 6th birthday is worthy of a post that isn't rushed through.. It's coming.

St. Agnes Christmas pagaent--memories of Galito.

Eye surgery & allergy visits--for El

Shopping for principals--

Eye Surgery

2009-11-13T02:43:00.000-08:00

November 11, 09
Right Eye-muscle loosening

To the Third Graders at St. Peter's

2009-11-05T03:18:00.001-08:00

Elliot is now 4 years old! He is doing amazingly, no doubt because of all the love and prayers said on his behalf.

He's riding a bicycle now, and that is a big deal. For 1.5 years, his been working with a therapist to gain the strength and balance to pedal. They started on a big wheel, and she'd sit on a wheeled stool facing Elliot with her hands on his feet. And in this way she would pedal his feet as he pushed her stool around the halls of Children's Hospital. Then, they moved on to velcro straps around his feet. Finally, one day Elliot grabbed a big wheel at home and said, "DOn't push me. I want to do it myself." And in few slow painful pedals, he'd moved! We couldn't believe it!

It's funny how blessings come. When Elliot started at a new school this fall, I was disappointed because they had a huge yard with no playground equipment. I tried to get together with the school leadership to apply for money for this. They seemed discouraged by the hard work required (they should take a page from Elliot's book!), and so it didn't happen. In their yard, all that's available are tons of trikes and a couple of swings. But guess what: I'm sure the extra daily practice with these bikes made all the difference with Elliot. And he might not have made these moves with the play equipment I thought so necessary.

Moving onto the taller bike was scary for El. It's a longer way to fall, and that's scary for a child with balance issues! But here he is on his Thomas bike, and let me tell you: If you're on the sidewalk when he's ridin, better get out the way. The boy is now quite fast. And is he proud! He smiles the whole way, laughs when the wind is in his hair...He stops when their is a crack in the sidewalk that he knows will knock him down. Stops at the street intersections...

The bike is great for him. Not only does he develop strength and balance, he has to use his eyes to coordinate his movements. Elliot's eyes have been trouble for some time. They cross when he tries to lock them in front of him, and they also wander up and down. All of this can confuse the brain, and so, over time, it will learn to ignore what one of the eyes is seeing, resulting in partial blindness. Next week, we will have Elliot's second surgery on these tiny eye muscles to help them work more accurately. Like always, we are hopeful that this small step could mean big growth for this amazing champion of a boy.

We have never forgotten you, and are happy you haven't forgotten us. Before you become 4th graders, we promise to make a visit.

I hope your year is going well for you.

With love,

Emmy (on Elliot's behalf)

35

2009-10-28T19:41:00.000-07:00

It's been a year and so much has changed and so much is the same.

My brother who spent my last birthday calling me from the psych ward is gone now. Twice today the phone rang with male well-wishers who I thought might be him, even before I'd read this old post. Funny, because he never really acknowledged my birthday, but I thought about him and talked about him quite a bit today. And I missed him, the him I knew, the him I would miss...not the him that he was at the end of his life. But I am sad nonetheless when I think of him.

And Elliot will have another eye surgery in a couple of weeks...just like we were awaiting last year. It's fascinating to look back at these posts...otherwise, I don't think I'd have a clue when all of these events happen.

How's my birthday going? Well, I woke up this morning and had a complete meltdown after the 10th "Mommy, mommy" requesting something. Despite the lovely cake and many surprises...I'm reaching the edge of my capacity for this life of glorified servitude, and need to make a concerted effort to dedicate time for my own needs and desires. The necessity of that was never more obvious to me than after my over-reaction to my daughter's own meltdown about her school clothes. As I drove to Elliot's field trip, I asked myself several times, "Why are you even going to this thing? Spend today on you, crazy woman." And then I looked in my rearview mirror, where I could see Elliot talking about the things he saw through the window, and knew that his first ride on a school bus, and his big smile would be better salve for my soul than any foot rub I could buy. So I went on with the plan, to ride over to the pumpkin patch, and saw in so many smiles of these children that their joy can be so easily transfered, and that I should receive it, so genuinely given, as the true joy of my life...being around children, my own and others...

I need to strike a balance between the routines of giving, seemingly endless, between work, and home...and my own desires to do so very much--to volunteer, chaperone, build that puzzle, go on the play date, plan the party, paint the picture, blah, blah, blah...and just be, by myself, and be still. I need this time to tap into my own wishes and desires, to grieve for my brother, to plan with my husband, to dream for my children, to listen to myself, and love who I see, inadequate but hopeful.

And in this same stillness, I hope to find the capacity to give more...to enjoy my parents as they enter the last stage of their lives, and to be more present to all of the love that surrounds my daily life through friendships, family, and community. My best birthday gift today was my cousin Becky telling me that she and her 3 siblings all consider me a sibling...this, when I've lately felt so much like the only child...I have so much in this exuberant, crazy life that is so perfect in it's dysfunction. And I am grateful for it all. I want the calm of mind to enjoy it all...that is my birthday wish.

Top Ten from Austin

2009-10-13T19:02:00.000-07:00

10. The mexican freetail bats emerging at dusk from under Congress Avenue Bridge.

9. Zilker Botanical Gardens.

7. Watching Ana create two items out of glass.

6. Great shopping!

5. A late, debaucharous (sp?) night of dancing with a skirt that was too short, with no concerns whatsoever.

4. Witnessing Becky and Jon marry. Beginning a life together is a big deal.

3. Seeing my 75 year-old dad in a tuxedo for the first time (he gave away the bride), and asking him to dance. Damn, he's pretty smooth.

2. Watching my daughter recite a poem (below) during toasts in front of 100 people. She's so brave, and I am tremendously proud. 4 days with her was such a tremendous gift.

1. Coming home to my 2 sweet boys, and my honey of a husband.

***
In poems, our earth's wonders
Are windowed through
Words
A good poem must haunt the heart
And be heeded by the head of the
Hearer
With a wave of words, a poet can
Change his feelings into cool, magical, mysterious
Mirages
Without poetry our world would be
Locked within itself--no longer enchanted by the poet's
Spell

Peter Keslo

****

Report Card Time!

2009-09-20T18:01:00.000-07:00

It's been almost a month since the kids started school, and here's the lowdown.

Public School
Administrative Clarity: D+

Student Eval didn't take place when it was scheduled.
Twice over the summer Elliot's enrollment was questioned (Did you get a letter? Are you sure he's coming here?)
When the student eval *did* happen, his enrollment was questioned, and his IEP was not there. The (+) comes into play because the group rolled with the eval (assuming the error was their's, not ours).
Principal was inaccessible for at least one week.
Orientation was poorly organized and showed a lack of understanding of the needs of young children: It was called "Parent Orientation." Children were there. We asked if we should go bring our child. We were told to do so. While Kevin went to collect Elliot, I sat through a meeting about first day logistics where the children sat or drove their parents crazy. I did not particularly enjoy getting a snapshot into this wide range of parenting styles. By the time Elliot arrived, orientation was over. Children had not been introduced to their teachers or classrooms. Nary a crayon on a table to occupy them. Did not look good.

Sense of Community for families: D/F

I got a good taste of a thriving happy community at Open House for the K-6 program. Sadly, there have been no opportunities for pre-K parents to meet each other, and connect, especially now that friendships and relationships have been formed.
Unintentional relationships are growing through drop off and pick up, but honestly, that's mostly a function of Elliot, who runs to hug each child and say "Good Morning," to silent clusters of parents.
It's an amazing school community there, but I don't think they realize how to engage, and connect parents...it might be a little threatening. There's definitely a guarded involvement (through fundraisers for example), but nothing really authentic.
There's kind of that "You need us, we don't need you" feeling...instead of being treated like a customer...and while some folks don't have a choice of what school will educate their child, it's everyone's choice to bring their child there each day. We should all be treated in such a manner.

Curriculum: A+

I've got to hand it to his teachers--the curriculum is developmentally appropriate, exciting, and provoking. Hands-on learning is evident from the nature of his homework assignments: look for examples of your favorite color in magazines and cut them out. Determine (after reading Goldilocks) if each bed in your home is Small, Medium, or Large, and if it's Soft, Hard, or Just Right. No worksheets, but a few days ago, Elliot wrote his first "A."
Parents receive a weekly newsletter with details about what's being studied, requests for connections with the home, like family pictures, a list of the week's homework (which I REALLY appreciate having in advance), questions to ask your child to make connections, and explanations of how do develop independence (have your child take his folder in and out of his bag. Have your child place his bag in the same place in your home each day).
I am SO very relieved that the poorly planned orientation didn't reflect how well the teachers understand what kids need and respond to.
I really want to deduct points for a crappy yard with no climbing equipment and no animals. I feel like the teachers do the most they can with what they have...

Least Restrictive Environment: A+

I am confident that the objectives of Elliot's IEP are being met.
He has a special ed aide with him in the typical classroom, helping him as needed. He is not "pulled out" except for a couple of therapies weekly. He's mostly with his peers, and it's evident through his development of friends, that HE is experiencing a sense of community, and feels very happy.

Teachers: B

I believe his teachers are exceptional. I wish there was more involvement/volunteerism allowed: parents are relegated to entry points ONLY. I don't know if this is a school policy, or reflective of the teachers' comfort level.
I am communicated with daily about his day through a notebook. His special ed teacher and I write longer notes to each other back and forth. His teacher has given me her cell phone number.
His teachers are cheerful, and appear to love what they do. They all seem likeable as well.

Overall, my goal for moving Elliot to this program was for him to understand how to apply the lessons of our intimate AH to a larger setting with greater expectations for behavior, and more teacher-directed experiences. I wanted him to receive his services within one environment (as opposed to shuttling him around town all week). We want Elliot to be in an inclusive kindergarten, if he seems ready, and this larger pre-K seemed like the next natural step. I feel good about having him at Haxel Park. He's happy, enjoying learning, creating friendships, and he is well-cared for and loved. This move has been a definite step out of my comfort zone, but I understand better why parents of special needs children who are able to afford small private programs opt for the public school. There is a strong awareness of what the child's needs are, how they can be met, and the understanding that these are part of Elliot's fundamental rights to receive them. I don't know where we'll be next year, but I feel good about where we are today. And Elliot does too!

Private School

Administrative Clarity: C

Having worked hard to learn the Art of the Parent Guide, I have to say, I was less than impressed at how confusing this first introduction to Ana's new kinder was: the information was alphabetized!? Is there first thing you want to learn about your child's school "Aftercare?" Random charts with no headers? In general, I became more confused as I read. Less than impressive.
There are so many events, I'm not sure what's important and what's just social. It's actually quite dizzying. In the span of two weeks, there were at least 3 parent events at night. I don't know if this slows as the school year pace becomes familiar, but for someone who usually needs to get a babysitter, it would be helpful to know what's critical.
Too many room parents, liaisons, helpers, board members, administrators have the password to the electronic "push page." I receive far too many notices in my email box...it's getting noisy. They need a better communication plan to sharpen the reception.

Sense of Community for families: A+

Parent involvement is highly encouraged, in indirect and direct ways. I've already done a lesson on hand-washing, and have plans to show pictures from Madagascar since the class has some new cockroaches.
Families are encouraged to be inclusive: invite all the kids in the class, or just one of them. Don't leave kids out.
There are a number of social events (see above) to meet and greet to your heart's content.
Parents receive a "Facebook" with pictures of all the kindergarteners and teachers in the PMK for the purpose of planning playdates. Love that idea.
There is the feeling that the teachers know you, know your child, and want your child to succeed.

Curriculum: A+

Intriguing. It's both rigorous and easy at the same time: Ana's reciting real poems, learning French phrase work, shapes of lips for phonemes (THAT is some crazy but fascinating stuff there), keyboarding, clock reading, intense math...with real expectations (higher than mine might have been?) that she is meeting.
Classic. She's learning songs that every kid should know--Camptown Races, When the Saints Go Marching In, Swinging on a Star, Hit the Road Jack! She has to run long distances each day. She has to file into the atrium to beautiful music everyday.
PMK- Every afternoon, the kindergarten has a whole building dedicated to "centers"--collage, printmaking, a science lab, a building room, a reading loft, chess, puppetry...what a nice way to finish a rigorous day.
Library--The library has to be the most impressive in the city. I love that my child can take home all she can carry each Friday. Her first week she chose a book for each member of the family. I LOVE that the schools policies reflect the value of literacy.

Teachers: A+

Innovative, Research-driven approaches. Each parent receives a guide to their approaches entitled, "Everything about Teaching and Learning in Room 4." It explains the how and the why of everything that is done. Way to include parents in on the purpose.
Ms. M1ller has been doing this for so long, as evidenced by the calm control she has...love that her eyes sparkle as she talks about it all. She loves what she does. She's stricter than many CD teachers--which I like.
There's a bunny that hops around her room. Did I say that already? I LOVE that.

Overall, Ana has yet to have a bad day of school. She comes home shining and tired (and sometimes surly when I ask too many questions). She loves her school, speaks with it passionately, is excited by the Middle Ages, the transmission of sounds, the vibrations our lips make when we pronounce certain letters, drawing on the computer, endangered animals, estimating seeds, the song of the day, chess, and marble runs. She's just happy. And what else could a mama want?

And, while I won't hold it against either school--just for the record, why? gift wrap and chocolate???

Oliver is ONE!

2009-09-18T09:05:00.000-07:00

How the time has flown with you, my littlest love!

Since you arrived in our hustle and bustle house, I've realized that our table was certainly missing you. Your sweet smile, and your intense gazes have brought a love we didn't know we were missing. Thank you, Oliver.

You're a boy, through and through, and love to wrestle, move, play with big body movements, and dance to music! My favorite thing you do is using objects under your hands to "cruise" on the ground instead of crawl. You go pretty darn fast on your homemade wheels too!

You love strumming the guitar, or trying to get the harmonica to sound, shaking a maraca or pounding the drum. You bounce to the slightest hint of music, and I see your lips moving slightly as if you're learning the lyrics.

It's impossible to get you to read a book. You'd much rather chew on books (which someone shared with me is a *critical* part of early literacy. It cracks me up!) than read them.

You like to pretend you're talking on the phone. With a phone. A remote. Anything that has buttons. And your babbling is loud and squaky. All the time, except when you're pursing your lips like a bird and OOohh-OOohhh-ing.

The other day, we saw some friends walking down Oak St, and I rolled down the car window. Ana called out to them, "Hello!" As we drove away, you waved your hand and hollered too. It's mostly like this when we are laughing, talking loudly, or relaying a story. You make your contribution to the general din of noise, and smile broadly.

You're as big as an ox, and in so many ways, we never had a baby period. You're so tremendously easy, sleeping from 6 to 6, fuss free, and honestly, I might remember a couple of weeks since you were born when that hasn't been the case. I'm so grateful for your easy going brightness. It reminds me of your dad, whom I love so dearly for his sweet and easy ways.

You have some words, especially "Mama" and "Dada". "Ana" is a new one. Ms. Gwen also heard you say "Snacktime..." not surprisingly(-; You repeat many sounds that we work to say, and read our lips so intently. I see you working up to "Elliot" and am pretty sure you're saying "Tita" to her delight. She's absolutely CRAZY about you, and we have to remind her not to pick you up constantly or rescue you from every cry. And when you see her, you're diving from our arms. Yes, that Tita has some good love.

You're passionate, and love to grab our faces with your two hands and

Your hair has curled and your ears are straightening a little, sadly. You're rolly polly, but up on those feet almost all the time now. We keep waiting for those walking days as you work up the courage to take 3-5 steps here and there.

You're so sweet and easy, Ollie, it's misleading...easy to get lulled into a false sense that all babies are this way. Thank you for being just who you are. We're enjoying every minute with you.

Lines we like at night

2009-09-15T19:18:00.000-07:00

Shadows are waltzing,
Moonlight is calling

The miracle of your love found me

--from your sleepy Jewel lullaby CD...I'm SO grateful for how much you boys like it.

When you wake, you shall have
All the pretty little horses.

--I just like thinking about my kids waking up to horses.

All by myself I have to go
With none to tell me what to do-
All alone beside the streams
And up the mountainsides of dreams.
--from the Land of Nod (What DO they dream about??? There AWAKE time is SO fantastic!)

The stars around you gleam,
On you I press
With soft caress
A little lovely dream.
++++
My little angels, such small lumps swallowed up in the bigness of the bed and blankets...your sweet long lashes on your rosy chubby cheeks...bits of heaven here on earth.

Thoughts from bedtime

2009-09-15T19:11:00.000-07:00

School has certainly wiped out my previous sleep-hold outs. I'm grateful that Ana and Elliot sleep well with less fuss these days. Still napless on weekends, but in bed for 8 is a good thing.

But my Olive, well, I almost wish you weren't such a "good" baby. You're in bed most nights at 6 pm. This means we have a good 30 minutes together--and that's not really time for lovin. It's feeding you (as you cry from exhaustion), bathing you (as you cry from exhaustion) and putting you in your crib ( where you lie down fuss free and sleep). Mornings are a no-go--you're sleeping from 6 to 6, when our morning circus starts. And of course, at school, I'm hiding so you aren't derailed by occasional sightings of me. I MISS YOU. And despite being a bit overwhelmed with work since I've been sick, I may just have to take your birthday off this Friday, and go to the zoo with you. (Shhh! Don't tell anyone. Except maybe dad).

Spped Racer

2009-09-11T19:18:00.000-07:00

I love how Oliver places two smooth objects under each hand, mostly blocks, and just cruises as he crawls, letting his hands roll, and not lifting them in typical crawling fashion. Is he in a hurry or something?

Can't believe my little cutie turns one this coming Friday.

Catch up

2009-09-06T19:45:00.000-07:00

There's too much to say, and I don't know how to chip away at it.
-Ana's started kindergarten. She is reciting poems, infusing French phrasework into everyday stuff, singing new songs ("Camp Town Races"), and working on this whole new approach to phonemic awareness that involves pictures of lips in various positions. And she glows. Each day that I pick her up, she's shining and bubbling over--or completely tired and surly. Both signs of a good day. Her friend is Mason. She's "the cutest thing you'll ever see in your life." And yes, she is--red-headed girl with pink glasses, and looks much smaller than the other kids- You like her because "she's not into Barbie and all that kind of stuff."
-I've done a lesson at her new school, signed up to be room parent, then backed out when I saw other candidates (and the many other ways there are to be involved). There are SO many events there, and we're participating in fits and starts. Feels good, and scary at the same time, to have Ana as part of "The Class of 2022!?"
-Elliot's started his four-year-old program. Lora Jane is his best friend. They sing songs about monkeys and happy and you know it on the Listening rug. Thomas hit him once. Thomas is his best friend(!?). He has chocolate milk everyday. He likes Haz3l Park.
-I've joined the PTO, and gotten the reluctant administrator to write the grant to Kaboom. I've come at the teachers full-on. And backed away when I saw they were just unorganized at the beginning. They care, and El's put them under his spell. And they communicate. And he's shining and bubbling over at pick up. At bedtime, after homework(!), Elliot nuzzles up, and gives me one word answers to the questions we've been told to ask...but he's so happy to talk about it with me. I've sent Lora Jane's family a note--coz there's no real way to meet each other over there. He talks about her every day. Even when there's no school. I've heard she has white blond hair. The picture of them in my head is priceless.
-Oliver loves being at Abeona House, and is just starting to walk around from here to there. He doesn't cry at drop off, but has discovered where I am, I think. He's asleep by 6 pm each night, which makes me kind of sad. There's little time for US to be US anymore. I know this will change as you get used to the routine...
-Kevin and I are managing the routine better than I thought. It's actually helped us to get organized. I'm trying to exercise, and am enjoying the little time I have once Kev brings the kids to school. I want to be a part of everything, and am working on picking and choosing. CD has a consuming social calendar, that I realized quickly I couldn't be a part of completely. I'm happy to meet the other parents, but honestly, want to be in the classroom. With both my kids. Doing little things here and there.
-My brother's 3 month anniversary is this coming Friday. I've reached an odd place (maybe coz I'm so busy) that it doesn't feel like it happened, and I'm mostly numb. Unless I think of a specific moment--or something triggers a painful memory. Sometimes I feel like it never happened. Ana asks me every month or so if I'll always be sad about it. I try to explain to her that it will always make me sad to think about. But I'm not generally sad. She seems confused about how I can be happy and sad all at once.
-Oliver will be a year old very shortly. He's such a jolly love...I can't believe (again) how quickly they grow and change.
-This flu has me scared...for my little ones, and for Elliot who is especially vulnerable.
-I'm looking into schools for Elliot for next year already.
-I'm kicking off a fall fundraising campaign for AH, planning a symposium at UNO while writing 4 grants due around the same time. And organizing the kids' tent thing for the PoBoy Fest. And if this grant comes through, I'm sure to help with this playground at El's school.
-And at the same time, Dad turns 75, Becky gets married in Austin, I turn 35, and Kevin and I celebrate our 7th year of wedded insanity.
-The reason for this litany of stuff TO DO is because one of the things that helps me get through all this stuff is reminding myself that this period is ONLY temporary. But honestly, I don't think I've had much down time. In a long time. How much of this do I create? And shouldn't I be grateful for every last bit of it? I'm just sayin'--somewhere in the To Do I'd love a girls-only weekend at the beach--or at a local spa--or at happy hour.

First Steps

2009-08-23T18:25:00.001-07:00

Late August is a time for first steps for our kids...all big steps, all towards greater independence.

Today, Oliver, my 11 month-old hubba bubba, took 2 steps, then three in short succession. Ana, Elliot and I were all there to cheer him on, and he gave his trademark big-mouthed grin, with nose crinkle and eye twinkle. I know that by the end of this week, he'll be walking wherever he wants to. Including up the ramp to Abeona House, where he started this past week. He's adjusting there quite well, but some days are harder than others. And with such a generally cheerful guy, I find myself burying my head to hide the sounds of him crying. When I talk about how difficult it is with him in particular, with his temperament, Gwen shakes her head and laughs, "You were the same with Elliot. In fact, you were worse."

Which brings me to my big 4 year-old boy. This week, Elliot starts a 4 year-old program at Hazel Pa4k. It's a public school that seems to have it's act together. In my search for schools, I was amazed at what people pay for in parochial and private schools: worksheets, teacher-led learning...Jefferson parish schools had some of the very few constructivist, hands-on approaches to learning. With a good mix of teacher-led experiences in a typical classroom, with therapies on-site (that *still* subscribe to the pull-out special ed model that I hate), I know Elliot will get everything he needs. But oh, the trust of that, with my sweet boy. My sweet boy who 3.5 years ago was the reason I took my current job--I just had to be there, close to him, making sure he was getting what he needed...and he got so much more than I ever could have imagined. I can only hope that the loving teachers I met will fall under his spell--he's pretty irresistable. But as he leaves Abeona, he's also leaving his Friends. And Friend is a word that's being used around there quite a bit, as the boys move towards FOUR, they are declaring their unwavering loyalties, threatening each other with the withholding of affections, and squeezing each other with unspeakable intensity of emotion. He will be missed. And he will miss. And I will miss.

And my Ana dear, took a big step into big school--and man, is it BIG--it's a CAMPUS, populated by children as young as 2 and as old as 17. But I am ever-validated in my choice of this program for Ana...coming into her classroom, we were warned by the teacher, "Mind there's a bunny hopping around. Don't let him out!" Are you kidding me? As we entered, I saw the other animals near the windows that led to outside: guinea pig, cockateil cage, fish...as the teacher gave us the brief tour, she lifted the paper that hid the beehive, where bees were harvesting honey--from the side, I could see the acrylic tube that led to the butterfly garden...oh, my naturalist, you are home! Montessori activities were scattered here and there, intriguing any child who walked by...2 chess tables set up...the math center displayed the gears of a beautiful old music box, an old brass kaliedoscope, hour glasses of different lengths/times, colorful liquid elements floating at different temps on a suspended numberline...This made the traditional palatable--the calendar math, the desks for the 1st and 2nd graders who are in the mixed age room that face the board...a perfect blend of approaches--the labor of love of this amazing teacher who obviously has read and applied best practices over many many years...I'm excited about another place, another step where the focus is LOVE of Learning! No grades, good relationships...I just believe in this stuff...Since that bunny twitched his nose our way 5 days ago, you've shared nothing but excitement and intrigue over your new big school...and the more folks I meet, the more I realize that I'm going to be as awkward as I allow myself to be...people are people.

We're all growing up. I'm making friends as are you...you just seem better at it than I am, Ana...maybe a tire swing would help the grown-ups?

My sweet children. Watching you grow is equal parts delight and dread. You are so beautifully perfect in your ways of seeing the world...I hope the world will return the favor.

Elliot is FOUR

2009-08-02T19:26:00.000-07:00

It's hard to believe. Elliot, you continue to amaze us each day...with your sweet spirit, your big heart, and your perserverence.

Right now, you're talking up a storm, and putting together complex ideas...asking why, and explaining things with because. You begin most explanations with "actually"--you say it so fast it sounds like "ashley." And, of course, we stop everything to hear what you have to say.

You're a pinball, bouncing from thing to thing, but we're (finally?) giving you some tools to get it all out--you love your birthday nerf swords, and are slashing us left and right (we have swords too!)...new musical instruments, and setting your room up like a music studio are great channels for that energy...you especially love your new piano from your Tia Ella.

You are a great big brother to Oliver, and love playing with him. Whenever you talk to him, you slip into "motherease" and are so sweet and tender and your voice gets so high...Ollie's eyes are so full of love for you. You like sharing with him, which we need to watch closely...the baby can't have some of your sprite or french fry just yet, big guy.

You got a new bike and are *this close* to being able to pedal. If we could just get you to look up while you ride!!! We might need to get insurance on your new Thomas bike, cause I see some minor disasters a-coming.

I've loaned you to dad for the last 4 years, but it looks like you're mine again. I'm happy you seek me out more, and want to snuggle, and come to me for a hug when you're hurt. You're the best snuggler, and I feel so warm and happy when you hold me.

Finley said you were his best friend the other day, and that was the best news ever.

Every park is "your Hazel Pa4K"--where you'll attend school in a few weeks...

You're jumping off of everything, including the JCC dive board...backwards I might add.

There are so many things going on with you--it's hard to keep up...But watching you grow is the best gift...and there are so many people (more than we realize, I'm sure) who love you too.

Happy Birthday, sweet guy. I love you--the whole world.

Happiness

2009-07-29T19:16:00.001-07:00

If I had to sum up my life over the last 5 years, the first word that would come up is OVERWHELMING. This is how I've felt for most of that time--juggling becoming a mom and a wife, managing my household with my husband not in it most of the times I'm there, learning how to do the best for Elliot, being pregnant or nursing most of that period, managing this wonderfully broke place, struggling financially, it's just been A LOT. Not much time for me to care about me.

And I've learned that I haven't learned how to manage my own chaos...I'm not very organized, and it's not a tool I've learned to use to say, learn how to put my kids to sleep in a less stressful manner. And I'm also stubborn, so I won't say, use a kid-leash to keep my wandering son tethered to me, because I just think they are offensive--but maybe that's just another example of how I don't know how to manage my own chaos. I use that "it is what it is" a little too much, and the result is me being a harried, exhausted mom, who gets resentful about how hard things are...

Standing outside of myself, and hearing myself has also exhausted me...I don't want to be this person.

As I think about Galito, I think of how the things I take for granted are the things that were so hard for him, that he never got to enjoy--
-simple domestic bliss (clean house, home-cooked meals, freshly cut grass)
-children's play (getting on the floor, playing a game, letting kids be themselves)
-a healthy, loving marriage (thoughtful gestures, flirting, silly banter)
-meaningful work (a sense of individual accomplishment, the joys of camaraderie with others)

I've been thinking about this a lot lately...and the other day, I just decided to be happy. That what I have might not be as easy to come by as it has for me, and that despite the challenges of the home, the kids, the husband, the job I'm so incredibly fortunate to have these, just as they are.

Well, thinking happiness and living it are still hard to push through in my overwhelmed state--and I still find myself over-reacting when stressed, of course. But I'm actively pursuing my own happiness now, today...not just for me, but for my brother...because all these "little things" I have, well, having them would have meant the world to him. I know he wants this for me. So I'm working on happiness. And thinking each day of all I have to be happy about, and trying to see the beauty in my chaos...I know it will get better.

2009-07-10T20:11:00.000-07:00

I'm missing you today. I wanted to look at your death certificate today. For some reason, I had to see if "suicide" was listed as the cause of death. I don't know why. I've looked at it so many times. Have I seen that before? Mom wouldn't get it. She just said, "Why? It's depressing." And I asked her if it said that, and she said, "Yes, of course." And we just shared that look we share now--the look of "Why?"

Tina and Gigi wanted to come over...I made up lies cause I just couldn't. Maura and Cam dropped off dinner tonight. We were home, and by the time they left, I was so glad they'd come. I know I would've felt the same with Tina or Gigi...but can't commit to the plan. Better to surprise me with some love and support like an effin ninja, cause if I see you coming, I'm gonna duck and hide. What feels so hard about making plans? I'm glad, and somewhat surprised when people want to be around me (why would Kathryn and Katrina want me at the beach?)--I feel like such a killjoy.

I see that Holly nominated your eulogy for a Just Post. I just read it again. It hurts every time, but thinking of reading it to the people who came makes me feel good. I'm glad they got to hear so much that was good about you...the You that hid for so long. It is good to miss you too...I haven't really missed you for so many years. But I hurt for you. And I feel the ghost of you, in the pictures everywhere of someone I am Sure I used to Know and Love...but where are you? I love you. That sadness is my love for you.

2009-07-08T02:55:00.000-07:00

I saw you at the Rock n Bowl--we were there for Kevin's work party--and there was your twin- from one of your stocky with long hair and goatee periods. Kevin says his name is Mario, but he looks just like you. Even dressed like you--long, board shorts, t-shirt, heavy metal bracelet--his bowling face even reminded me of yours--I thought of what you'd look like bowling...I watched Mario quite a long time. I wonder how his voice sounds. Ms. Gladys says this is something you do after someone you love dies. Says it happens to her quite a bit with Ardis. I couldn't help gawking. It was very surreal. You should be here. I think of how could you were. It was an unnatural cold. I think of that sensation, and your curly hair each day. I'm glad I touched you before you were put in the ground.

We went to Bay St. Louis with Mama, Daddy and Haydee. I was surprised Daddy came, but everyone enjoyed it. Daddy watched Meet Joe Black, and it gave us some interesting conversations. I'm surprised with how easy it is to treat him with delicacy now--he so often deserves a good head slap, but I can see such a deep sadness in him now. Mama too--she cried on our way back from the mall. Said she always bought you something. I wonder if you cared or knew how much we'd hurt. Or if it really didn't matter. No, I guess you can't live for someone else...especially not the way you lived. I'm sad you couldn't find happiness. I wonder if now that is our curse.

Oliver is the bringer of love these days. He slept with Tito in BSL, and Daddy said it was the best sleep he's had in weeks. That Ollie woke up crying, looked over and saw him, and smiled at him in the dark. Well, that just breaks him all up. Mama is always holding him. It will be a miracle if he ever walks with all that luvin. I wonder now about the surprise of him coming. If the universe knew something I didn't about what would happen in our lives. That we would need a little baby to pull us out of our sadness that could so easily swallow us up. A baby, that so very often, looks exactly like you did. Give or take 10 pounds.

I wonder about this pain--and if life is slowly trying to rob me of my optimism, and if I'll have the strength to fight it back. And I look at so many others, mostly folks older than I, who've lost, and hurt, and endured. That's just life, I guess. I find myself not wanting to focus on the good bits of life--keep waiting for something else to happen.

I don't know that I've ever felt so fragile--I look at folks who might want to talk to me with a mixture of fear and caution. Some people look like they are scared of my pain...but then again, I'm paying an inordinate amount of attention to these interactions--so unusual for me. I've always considered myself fearless. Now the idea of being fearless and having so much to lose is ridiculous to me.

At some point, I'm supposed to turn this into something positive, right? Ms. Gladys says it will always just hurt. But it will get better over time. I'll just have to believe that, I guess.

God

2009-07-01T10:02:00.000-07:00

That force you feel in your chest,
that compels you to help another,
that pulls at you to seek outside of yourself,
that will relieve the worries that pile into mountains,
Fighting against our tendency to live strictly indulging ourselves,
ignoring the world of pain, sadness, injustice, need...

God, like gravity pulling me forward,
This force, this love, compelling my actions and fulfilling itself,
as love fulfills itself, through a million actions great and small.

What else could this be called? I believe in God because I believe in this force, in you and in me. We are God.

Ms Big Stuff

2009-06-30T20:42:00.001-07:00

Dear Lil' Miss Vegetarian obsessed with Judaica,

I just ordered the backpack you picked out for big school.
I'm very excited about all the things happening for you. I'm wondering what treasures you'll put in this bag each day....I'm happy to be on this journey with you.

Love you,

Mama

What's on my mind?

2009-06-28T19:53:00.001-07:00

Random thoughts from this week:

Grief-o-meter set to NUMB.
When I'm feeling NORMAL, I think, "Gee, I'm feeling kind of normal." I realize that this is not normal.
I must talk to each of my parents at least one time each day.
When I feel someone trying to pull me from my funk, either knowingly or not, I feel kind of angry. Even the neighbor who innocuously invite El into his workshop, I think, "Dammit, we can't just go see what's in your workshop...the walk, by itself, is the best I can do right now." We go into the workshop and I'm grateful for him helping pull me out of the cloud over me.
Can't look at a bridge without thinking of her friend's mom who committed suicide this way a couple of years ago. We talked earlier this week about how traumatizing bridges have become. I wonder if garages will do the same for me.
How do I get rid of my brother's handprints on the rafters in the garage? My parents haven't noticed, and I don't want them too, but they drive me crazy.
Even though right now I'm inclined to think, "My life is inordinately hard, harder than most of the people I know," and pity myself a great deal, I'm hating being told I'm an inspiration or a hero, or any other fluffy term to euphemize(?) that "Gosh, your life is shitty, and watching you helps me realize that I'm kind of lucky." It's not a goal of mine to inspire you with my trials and tribs. I'm looking to have a happy life here. If I think too much about how hard all this is, I might just fall into a pile on the floor like Humpty Dumpty...please don't remind me.
I think about relationships in terms of whom I will bury. If I'm lucky, I'll bury my parents. (I hate the thought of them having to bury me). My husband is older...and I'm sure I'll have to bury him. What does he want done with his body? I have so many friends. They make my life rich and warm. Will I have to tell them goodbye? What a terrible cost of love. I can't live any other way.
I am overwhelmed. My life is hard. I want my husband home. I want to be a more present parent. I don't want to worry about money so much. I want for simple things that aren't things. I wish I had the capacity and presence to give back to so many who do thoughtful things. Can I manage some thank you notes?
I don't want to talk to you, whomever you are. When I do talk to you, I feel strange like I'm outside of myself. If I enjoy talking to you, I think about it constantly afterwards, and feel guilty for laughing or chitchating or being the person I was two weeks ago.
I want to hold and kiss and tell my children each moment I see them. I tell them how beautiful they are, how perfect they are. I seek to love them more perfectly. I'm grateful for this lesson.
I have nightmares. They are gruesome and sometimes terrifying. They involve all sorts of people. I remember these nightmares the next day and replay these scenes along with Galito's final moments each day. In some ways I feel traumatized.
I've forgotten so many things and so many plans.
My summer plan was once--have a house full of kids coming and going and slipping and sliding and eating popsicles...now it's survive the summer, open the door if you feel like it.
Do people know how much it means to show up at a funeral or do small things for a funeral service? It means a lot. Each sympathy card means a lot. Saying something to acknowledge something that has changed me forever means a lot. Thank you.
I'm an only child now, and think about how alone I feel in the universe. I'm suddenly grateful for having 3 kids, so they have more than just one other person, just in case.
Please God, don't ever take a child from me.

Chit Chat

2009-06-20T09:37:00.001-07:00

I'm just not in the mood.

Oliver at 9 months

2009-06-19T15:17:00.000-07:00

At 9 months, you're a sharky one, and quite toothy with EIGHT (8) whopping chompers. You use them on any and everything around, including me!

You are a charmer, and LOVE to make sweet eyes, with a crinkle of the nose, and a toothy, dimply grin.

You're cruisin' all over the place, and a few weeks ago, I would've pegged you as an early walker, but lately, we're all just holding you so much, for love, for hugs, for kicks, that we might delay your gross motor development accidentally.

You're so vocal, especially while eating--grunts and moans and groans and songs. When you're not eating it's a DADADADA or AY-DAY. Occasionally a mama, but hey, I'm not complainin.

You're also like the house taster. I'm sorry to say, that we love just giving you any old thing to see how you'll respond. This morning, Daddy completely flipped because he realized (too late) that the cinnamon roll he'd broken a piece off of had pecans! You were some angry when I tried using my famous finger sweep to take out the offending sweet bits. Were they yummy baby? Plenty of time, plenty of time...

And that's what I look forward to...plenty of time to watch you grow, plenty of time to share in your warm smile, plenty of time to wipe your tears and hold you close, plenty of time to hear your Elliot coo sweetly to you each morning, plently of time for Ana to pretend you're hers.

We're spoiling you, all around.

A week ago today

2009-06-18T03:16:00.001-07:00

A week ago, in about 30 minutes, Mom called me and told me you were dead. That you'd killed yourself.

I stared blankly at the wall. I wokr up Kevin. I thought about my work appointment--I was so numb to you that I actually thought to myself I would run home, then meet those folks at 7. I fed the baby, changed clothes, and drove over.

There were three big fire trucks driving away from the house very slowly when I arrived.

I thought I would throw up.

As I waslked up the driveway, the cops scrambled, and quickly closed the garage.

I then heard mom and dad tell over and over what had happened. Over and over how you must have been hanging there while mom ate her breakfast. Over and over how dad cut you down. He must've had to take off the tape to do CPR. I didn't think of that til just now.

I know you're at rest now, and felt some peace at the service Monday. I can't take this painful end out of my head though.

I'm sorry I didn't tell you more that I love you, that you are a good person, that I'm sorry life is so painful for you. i'm sorry you felt so hopeless. I'm sorry I felt so hopeless about you.

Final moments

2009-06-17T11:37:00.001-07:00

Last night I couldn't stop thinking of your final moments. I cried and cried imagining how very lonely that would be. I thought of the masking tape, and why your lips were the color they were at the funeral. and i couldn't take any of it out of my head.

Ms. Gladys says I don't know what your final moments were. That we are never alone. I'm holding that close to me today, and will use it if it comes to me again tonight.

2009-06-16T01:53:00.000-07:00

I can't sleep Galito.

Revised Eulogy

2009-06-15T18:08:00.000-07:00

Galito,
I felt your presence today, and got through it. I was so scared that I wouldn't be able to get the words out. But you were with me, and before I spoke, there was a tremendous peace. Thank you for that. I hope you heard what I said. I meant every word. It was hard to see you, so still and so cold, but your hair felt the same, thick and curly. I can still feel it in my hand. I miss you brother. I miss you.
****
Galito

Our friend, uncle, cousin, nephew, father. Only son of my parents. My dear sweet brother. You were beloved.

You were unwell for so long. But although you felt overwhelmed by your disease, we can’t define you by your illness. You were more than that to us, for so many many happy years, don’t you know Galito?

As a son, you deeply loved your parents. One of my happiest memories of you, is seeing you return from fishing in Honduras with Dad, smiling from ear to ear, your catch held high. So proud. You posed for pictures, holding up your fish, standing next to Dad, with his arm wrapped around your shoulders, you looking up at him, him smiling down at you. I could see by your bright smile how much you enjoyed that time, just you and dad and the open sea. How happy you were to share that adventure with him.

You and Dad shared that hot temper, and it often got in your way. But that last night, you kissed him “Goodnight.” You wanted him to know how much you loved him. And you knew how much he loved you.

Mama was your little queen. You loved looking for ways to make her happy, even if it was just finding Colombo on TV, and calling her over. You towered over her, and rarely missed an opportunity to playfully hug her, and affectionately give her a kiss.

She loved when you were working and would come home happily saying, “Mom, I’m home!” You were so close to Mom, that as unfair as it is to be standing here, I don’t think you could have ever been able to let her go to Heaven before you. You couldn’t live without her. You had to go home first.

She loved you as only a mother can. Through Mama, you were understood. The two of you would have long talks when you were feeling down, and she wouldn’t rest until she’d eased your worries. Mama’s compassion for you was unyielding: plentiful and saintly. She was your best friend.

Through her and Dad, you knew unconditional love. God’s love was always there, even when you all struggled, because they would do everything they could to help you. Never were there two parents more devoted to a child than our parents for you, Galito. And they never gave up on you.

You loved being Mara’s daddy. And were happiest when you were working, and could provide for her. Every penny you would earn would go to her. You loved buying her toys and fun things that you could enjoy together.

You wanted to be the best father you could, and you did the best you could for her. And she loved you so much. A friend of yours recently shared with me how quickly you’d whip out your wallet to show her off. You were so proud. I am happy that you got to enjoy fatherhood, and your daughter’s joy and laughter, that you celebrated her successes and everyday fun.

As my brother, I always knew how much you loved me. You always included me, even when you were hanging out with your cool friends in high school. Even when I wanted to wear your leather jacket. You’d take me out with you on the weekend, and you’d drive the Gold LTD, and we’d go to the lake or French Quarter, and you were always proud to have me by your side, and were always looking out for me.

And when you were playing in your band, I’d stand in the front of the crowd at the VFW hall, and make sure everyone knew I was your sister. I was proud of you too. And my friends, especially the older ones, sometimes I wondered if they wanted to come over just to look at you. You were just so handsome.

I loved when you taught me riffs on the guitar, and staying up late watching MTV together, and all those years when we were so very close. Where did they go?

I remember the slobbery kisses you’d give—and I’d always complain that they were too wet, and try to dry off my cheek. What wouldn’t I do for one of those kisses right now?

I miss you so much. I thought I had lost you so many years ago, as you became ill and distant, and I became confused by who you were. But now that you are gone, I understand how painful it is to really lose you, and I can see you so very clearly. You are unobscured by your illness, and all of those happy sweet moments are with me. They have replaced everything else.

No—I can’t define your life by your illness. There were too many good memories, and too much of a life before you got sick, and too sweet of a boy beneath it all. Please forgive me, Galito, and the rest of us-- who thought you had some control over your choices and behaviors. We were deceived by your disease, and sometimes, it kept us from being able to love you the way we wanted to. But we always loved you. We never ever stopped.

While we are relieved that you have found some peace, it will take us much time to let go of the many joys we wanted to share with you. We weren’t ready to let you go, and were always hopeful that you would get well, and be the boy, and young man that we knew, and fulfill the dreams you had in your heart.

I know that your grandparents were in Heaven to receive you, and Tia Chacha and Blanca, and Tio Nando were there to wipe your tears and hold you and tell you that you were OK. I know that there, you are well. You are perfect, and you are whole.

And now it is your turn to watch over us, the way you always wanted to while you were here. I find comfort in that, and find myself talking to you with the ease of those many happy years we shared. I feel closer to you than I have in so long. Why do I feel like I have my brother back when I can’t hold you or hear you? I know it is because you are in my heart, where you will always be. You are here with us now, Galito.

If a man is measured by how much he is loved, then you lived a successful, bountiful life. You were loved, and those closest to you knew who you really were. You were that sweet boy, who gave slobbery kisses, and loved fishing, and wanted to be a rock star. And Oh How We Love You.

2009-06-13T21:47:00.001-07:00

I have never felt a pain so deep before.
I don't think I will ever be the same again.

Eulogy for Galito

2009-06-12T22:48:00.000-07:00

Galito

Our friend, uncle, cousin, nephew. Only son of my parents. My dear sweet brother. You were beloved.

You were unwell for so long. But we can’t define you by your illness. You were more than that to us, don’t you know Galito?

As a son, you deeply loved your parents. One of my happiest memories of you, is seeing you return from fishing in Honduras with Dad, smiling from ear to ear, your catch held high. So proud. You posed for pictures, holding up your fish, standing next to Dad, with his arm wrapped around your shoulders. I could see by your bright smile how much you enjoyed that time, just you and dad and the open sea. How happy you were to share that adventure with him.

You and Dad shared that hot temper, and it often got in your way. But that last night, you kissed him “Goodnight.” You wanted him to know how much you loved him. And you knew how much he loved you.

Mama was your little queen. You loved looking for ways to make her happy, even if it was just finding Colombo on TV, and calling her over. You towered over her, and rarely missed an opportunity to playfully hug her, and affectionately give her a kiss. You were so close to Mom, that as unfair as it is to be standing here, I don’t think you could have ever been able to let her go to Heaven before you. You couldn’t live without her.

She loved you as only a mother can. Through Mama, you were understood. The two of you would have long talks when you were feeling down, and she wouldn’t rest until she’d eased your worries. Mama’s compassion for you was unyielding: plentiful and saintly. She was your best friend.

Through her and Dad, you knew unconditional love. God’s love was always there, even when you all struggled, because they would do everything they could to help you. Never were there two parents more devoted to a child than our parents for you, Galito.

You loved being Mara’s daddy. And were happiest when you were working, and could provide for her. Every penny you would earn would go to her. You loved buying her toys and fun things that you could enjoy together.

You wanted to be the best father you could, and you did the best you could for her. And she loved you so much. I am happy that you got to enjoy parenthood, and your daughter’s joy and laughter, that you celebrated her successes and everyday fun.

As my brother, I always knew how much you loved me. You always included me, even when you were hanging out with your cool friends in high school. Even when I wanted to wear your leather jacket. You’d take me out with you on the weekend, and you’d drive the Gold LTD, and we’d go to the lake or French Quarter, and you were always proud to have me by your side. And when you were playing in your band, I’d stand in the front of the crowd at the VFW hall, and make sure everyone knew I was your sister. I was proud of you too. I loved when you taught me riffs on the guitar, and staying up late watching MTV together, and all those years when we were so very close. Where did they go?
I remember the slobbery kisses you’d give—and I’d always complain that they were too wet, and try to dry off my cheek. What wouldn’t I do for one of those kisses right now? You loved intensely, and in so many ways, you were too sweet for this confusing, painful world.

No—I can’t define your life by your illness. There were too many good memories, and too much of a life before you got sick. Please forgive me, Galito, and the rest of us-- who thought you could change, that you had some control over your choices and behaviors. We were deceived by your disease, and sometimes, it kept us from being able to love you the way we wanted to.

While we are relieved that you have found some peace, it will take us much time to let go of the many joys we wanted to share with you. We weren’t ready to let you go, and were always hopeful that you would get well, and be the little boy, and young man that we knew.
If a man is measured by how much he is loved, then you lived a successful, bountiful life. You were loved, and those closest to you knew who you really were. You were that sweet boy, who gave slobbery kisses, and loved fishing, and wanted to be a rock star. And Oh How We Loved You.

Moving on

2009-05-30T13:53:00.000-07:00

Ana's last day at Abeona was Friday.

*sigh*

Elliot's last day will come at the end of July.

We had a ceremony where kids asked that we not take their sunshine away.

*lump in throat*

That night, we went for sushi, and Elliot discovered Shrimp Tempura, Oliver enjoyed his muse of noodles, and Ana relished her California Rolls. And Kevin and I held hands over hot tea, and came home trying to catch frogs under the crescent moon, and wondered at how quickly our little ones have grown.

Again and again, how many times will we have this feeling? This sad longing at these moments passing by?

Mental Illness

2009-05-30T13:47:00.001-07:00

The disease I can't see
and still don't quite believe
I just find you belligerent and frightening and sometimes evil
when I'm not feeling completely
numb and cold
and denying I ever loved you.

I am struggling right now
to give shape
to your future care
when I really don't care
about you at all.

If I could...
well,
I can't even say.

I wish you could
remove your grip
from our hearts...
you're killing us all,
and I still don't quite believe
that something is killing you...

Drop you off
in the middle of a dessert
sayin leave us alone
with no phone
and see you in the afterlife.

Asking Science for a Refund

2009-05-30T13:37:00.000-07:00

On our recent trip to the opthamologist, who after another 2+ hour wait remains confused about why Elliot's eyes made such a dramatic downturn three months post-op, we were encouraged to have another MRI done.

And exactly WHY would I subject that child to another MRI?
Deny him food, put him under, and have him put in a machine that makes the smoke monster on Lost sound sheepish because he might have some kind of flare up that causing these changes?
Can you DO anything about these changes?
Can we prevent these flareups?

If you're just fucking curious, you'll have to poke around on some other CMV kid, because my child is not a science experiment, and we have not donated his body to your cause.

Why can't doctors of children with a host of specialists coordinate care and actually TALK to each other? A quick call to his Infectious Disease doc and/or neurologist would tell him all he needs.

So what to do now? I'll wait two weeks (and hold my son down while I put on his glasses), then wait two hours to see this doctor again, and ask him if he thinks my son has a brain tumor or some other legitimate reason for an MRI. And I'll wait to see him again because I have no choices on who to see. He is, all at once, the best and worst doctor in the city.

8 months

2009-05-18T19:34:00.000-07:00

Ollie is 8 months today
and I don't have the pictures
and can't pull together the words,
my heart is full.
My children, my treasures.

Letting myself off the hook

2009-04-14T12:13:00.000-07:00

Well--

There's no news I've found about the Hep A vax that would have kept me from immunizing Elliot.
And while that helps ease my conscience, I'm still struggling with fear...my fear that he is losing his eye sight.

Today I'm waiting to talk with his optham. re: vaccination and what glasses will/might do. And I'm waiting to talk with his pediatrician about CMV, and if it's possible that it's active now, and if that might mean a change in some of his functioning.

In general, I feel like there is an elephant sitting on my chest. And I don't want to ask him to move. I want to ask him to just move further up, and finish me off, instead of smothering me, a bit at a time.

El's Eyes

2009-04-11T20:39:00.000-07:00

Hi folks-

I'm just brushing up on postings a couple of months back on kids with calcifications and reactions to immunizations. Abby, it seems like Jack's delays were the most intense that were shared.

We've recently had an experience that may be due to immunization, and I am searching for potential causes. Elliot (3.5, microcephaly, unilateral hearing loss, "wandering" eyes, CP) has had all his vax "on time" w/o any concern from any doctor (or uninformed parent). Last week we had him vaccinated for Hep A in preparation for a family trip to Central America. He'd visited the opthamologist just before because of his strabismus...Followed up w/ the optham. a few days post-vax and there's a significant change in the wandering, prompting some immediate action to look at glasses and discuss his eyes in a more intense way.

We've noticed increased wandering, and tonight, at bedtime, Elliot told me "My eye hurts." When asked if he wants to go to the doctor, he said, "Yes." My son's gone through so much and has NEVER told me something hurts. I feel tremendously responsible and guilty for having him vaccinated despite having read this. Elliot's never had any adverse reaction previously to vax, we've never been warned by any docs...I'm wondering if anyone out there has seen any changes in their child's vision like this (strabismus/accomodative esotropia), or Hep A experiences, or post-immunization experiences like this one.

Thank you,
Emmy in New Orleans

El's Eyes

2009-04-11T20:38:00.001-07:00

http://www.umsl.edu/~garziar/factsheets/factsheet_accomesot.pdf

What's happening?

2009-04-10T02:40:00.000-07:00

Follow up with Dr. Ellis yesterday.

Elliot's esotropia (a form of strabismus) has worsened since last week's visit. This tendency of one eye to act independently, causing his brain to discount the input from the wandering eye rendering it useless over time has been an issue for a few years...we tried glasses, then surgery (for that issue as well as another), and it seems that something has changed.

We've noticed increased wandering in the eye over the last month.

It's this recent change over a short period as observed by his opthamologist that has me wondering-
1. Is this related to the Hep A vax Elliot had for the Honduras trip? Other CMV moms have reported changes in their children's health post-vax (seizures). This has never been our experience. Nor do most children get Hep A vax, it's a precautionary measure for the trip.

2. Is this related to a flare up of the CMV? Elliot slept terribly last night, threw up his sushi after dinner, and is not at his best right now. Is the same reactivation of CMV that is causing the vomiting also causing other parts of his body to react differently? Is it possible that this change in his eye sight is a temporary weakness (like the one we've always noticed when he's tired)?

And so, we're back to getting glasses. Elliot is at risk for losing his eyesight, which I think was always the case. But I'm feeling angry, and tired about this right now. And quite guilty.

Should I have researched Hep A/vax in greater detail with the CMV community and made a different choice? I feel the burden of being the family researcher, and I'm not very consistent about it. Kevin will never do this kind of thing, something that I both love and hate. Last night, struggling with my feelings, I thought, Might it be my fault that Elliot loses his eyes? Fuck. I feel a tremendous amount of responsibility, and like most of this, we'll never know what's causing the change in his eyes, so I'll add this to my guilt cocktail.

Archive the appointments

2009-04-08T19:22:00.000-07:00

For our records:
March 24: appointment with Dr. Wong, Neurology, follow up in 6 months (Sept):
Elliot is doing amazingly well. He and Dr. Wong had quite the conversation, and he was even reprimanded for his "sleep walking." Dr. Wong is very impressed with Elliot's progress.

March 27: appt. with Dr. Hyman, Gastroenterologist
Concerns over Elliot's vomiting occasionally. I want his stomach checked out for possible CMV lesions, or the possibility that the reoccurance of CMV results in the throwing up episodes. Call Dr. Hyman after 3 days of repeated vomited for admittance to hospital for endoscopy.

March 31: Dr Ellis, ophthamologist
Routine check up. Noting some wandering in the eye. Return for dilation. Possible need to explore glasses (again!).

April 6: Dr. Gorman, pediatrician, Hep A vax for Honduras trip.

April 9: Dr. Ellis, ophthamologist
We'll see. Or at least, I hope we'll see.

GIve me the BeeGees

2009-04-02T18:58:00.000-07:00

Ana just told me that a dead bug gave her the BeeGees.

I think she meant "Hee-Bee-Gee-Bees," but her version is far better.

Island Life, Here we Come

2009-03-30T21:05:00.000-07:00

Our Homeaway Vacation Dream is coming true! We've booked the place and it is beautiful!
We took our passport photos, that I hope to scan into the blog.
We've purchased our tickets for departure in a few short weeks.
I'm taking Kevin's picture to get an online replacement of his dive card.
I'm calling American Airlines to let them know Olive will be on my lap.
I've purchased a Kelty framepack for Oliver to ride in at the airport and on hikes.

I'm researching our itinerary for the island, which will include:
several dive experiences
dolphin encounters for Ana and Elliot
horseback riding
snorkeling
tropical drinks
typical breakfast
oceanfront lounging
star gazing
deep breathing
belly laughing

And on the mainland:
I hope to meet my new 'niece' Crisella
I want to spend time with Tia Marta and Tio Yeto, Tia Thelma, Pamen, Hector Emilio & Maria Marta, Tio Eduardo, Tia Maria Teresa, Tio Rolando...I want to see how much Juan Alfredo, Hansie, Daniel, Rafael, Blanca, Ana Cecilia and Laura have grown.
I want to go to Copan Ruinas. The last time I was there, I was courting Kevin(-;
I want to eat sea bass on Lake Yojoa.
I want to take a day trip to San Antonio del Oriente.
I want to share my beautiful children with our beautiful family. I want them to fall in love with the land, the people, the traditions. I want to start a tradition of these visits...these were such a big part of my growth and development. I can't wait.

Built-in entertainment

2009-03-30T19:17:00.000-07:00

Q: What's a stack of white cheddar cheez-its and a straw?

A: Paperwork and a pen, of course!

Q: What do you get when you add a pair of sunglasses and a piece of clay to the bathroom sink?

A: Groucho Marx, of course! (Or, in Ana's words: A funny man)

New point and shoot

2009-03-30T19:12:00.000-07:00

BIG LOVE.

You make me wanna squeel!

2009-03-30T19:04:00.000-07:00

Have I ever told you that when I talk to Oliver, he squeels, buries his head in my shoulder while grabbing my head with both hands, and then tries to eat me (while squeeling)???

That's exactly how I feel when I see him too.

X marks the spot.

2009-03-30T18:44:00.001-07:00

Why does pacifist me LOVE love LOVE that my son is:

pretending everything is a sword

jutting these imaginary swords forward and growling, as fiercely as he can, "MY SWORD!"

Argh-ing constantly

Growling

More arghing.

I absolutely love it. You, son, are my buried treasure.

Think big

2009-03-30T18:35:00.000-07:00

On our way home from the library, carrying a really heavy bag, I was waiting for Ana to complain and ask pack-mule me to add the bag to my load...

Me: Just consider this practice for kindergarten, when you can bring home as many books from the library as you can carry.

Ana: As many as I can carry? (This, from the girl who on first site of Harrah's casino asked--"Is that the library?" Talk about a world with skewed values...)

Me: Yes. As many as you can.

Ana: Can you use your mouth?

Me (Laughing): Your mouth? I don't know. I think you'll have to ask the librarian.

Ana: That's the kind of thing I'm not comfortable asking other people. That's just for us.

Pink Shades from a Parade

2009-03-21T22:54:00.000-07:00

Fairy Houses

2009-03-21T22:49:00.001-07:00

Mine and Ana's backyard fascination now

Fairy houses in the background
Fairy Cafe

Our fairy mailbox (write on leave with sticks)

Last Weekend: Stennis Space Center & Bay St. Louis

2009-03-21T21:09:00.001-07:00

Oliver at 6 months

2009-03-21T21:03:00.001-07:00

Happy 1/2 Birthday!

2009-03-18T19:01:00.000-07:00

Oliver is 6 months old today. And what a joy of a boy.

Notable:

You're always smiling: you're temperment is gentle and joyful.
You hold the gaze of any who talk to you
Crinkling your nose when you smile (it captivates)
Easy-going: you put yourself to sleep after about 60 seconds of fussing, then suck your thumb and go to sleep
A mama's boy...I'm yours and you're mine. You reach for me now, always gazing while nursing. If I smile, you smile...
Vocal--"mama" and "tita" are your first words (this week!), you're always playing with sound. You love to blow raspberries while nursing. This is very funny, but can be easily misunderstood in a crowd (I'm waiting for someone to offer me some Bean-o).
You are so durn juicy! Roll upon roll of love. That hiney is so ridiculous...I love showing off your naked parts. I'm really sorry about this.
No one believes you're only 6 months old. You're a chunk, sturdy, aware of what's going on around you.

Milestone moments:

You're sitting up like a champ now.
You show no interest in crawling.
You like being up on your feet.
You're now eating rice cereal, sweet peas, pears, and sweet potatoes (today). You so enjoy eating and trying new flavors--first grimace, then eyebrows, then eager sucking on the spoon. While eating,we need to give you a spoon for you to suck on because you always grab the one we're feeding with.
You have two teeth in your lower gum.
You laugh! And are so very ticklish--on your cheeks, your tummy, little arm pits...I love kissing your neck and hears and hearing you chortle.

Your peeps:

You look at Ana like you look at me. Likewise, she treats you like I do with the exception of nursing.
Elliot's like your play buddy. You shriek with joy when you see him, and he begins the baby talk. "Hi Ol-ver. Hey, Baby." Sometimes he copies your behaviors (which we don't like), but quickly gets back in Big Brother role with the right direction.
I love having the three of you in bed with me, looking at a book. Seeing the three of you together is an amazing feeling.

Coming soon, by your first birthday:

International travel, an emerging curl, and Abe0na.

Financial Aid

2009-03-16T18:22:00.000-07:00

It's not official, but it looks like we'll have enough aid to get this tuition within striking distance.

At the very least, the tuition will be the equivalent of a low-moderate Catholic school. And with such a good fit between child and curriculum and environment, there's no reason not to.

The paperwork will be sent off in the am.

*whew*

One down, two to go.

A bit whipped.

2009-03-11T18:50:00.003-07:00

I don't know how long I can keep up this pace I've set for myself-

These days, I'm working 7-2:30 (feeding, pumping, & the rest of it beforehand). I used to sleep until 8 (bless Kevin for making breakfast) so this is a big change.

All in all, I like getting out so early, but with the preschool full of children until our oldest ones go to camp, I'm taking my two home when I leave at 2:30...preparing snack, planning an afternoon of activities--usually including some art experience, some science experience, one walk, backyard, 30 minutes of cartoon during dinner prep, and then, what used to be my only tasks after picking up the kids: cooking, cleaning, bathing, reading, and trying not to go insane while my children take turns needing everything when they are supposed to be sleeping. I am definitely feeling the "second shift" here, like I'm working two jobs. Elliot's energy and attention span are particularly trying...he runs from one thing to the next, and wears me out. I can't leave him in a room unattended unless the TV is on. He will find the one hazard slash danger slash fragile slash important thing to mutilate/spill/put in his mouth/destroy/take apart. And Kev's only home 2 nights a week now, and bedtime has sunken into the lowest pits of hell. All three kids are needing me and getting up and crying and teething and losing teeth and complaining about my parenting and waking up the child that just fell asleep and crying for their daddy when I feel like doing the exact same thing. Did I mention Ol's eating through the night?

And between the kindergarten apps, queries about summer camp, and work-related frustrations, I feel knackered. I was so very ready to throw my hands up on Friday, but tried something breathing, and put things in perspective. Here's what's going to get me to my vacation:

Hearing - I'm now a part of the CMV community. Often I find it challenging to participate in these forums...our Elliot seems to be higher functioning than many cases (or at least the ones on the forum). The stories and challenges that some face are sobering. And sometimes, I feel them defeating me...with Elliot's tube coming out, I was convinced he was losing hearing in that ear. Hearing screen Thursday revealed that Elliot's hearing in his left ear hasn't changed since he was 6 months old. *whew*. I can't stop whispering to him, and enjoying his wide-eyes as he whispers a response. My focus on creating positive networks (yes, of typically developing children, mostly) has served us well. I'm not opposed to widening our circle, but in general, need other optimistic, realistic, and enjoyable people around me. I have ALWAYS been supported by my friends and family.
Kindergarten - Ana is seen as a perfect fit at a program that I see as a perfect fit (curriculum-wise). I feel good about my search for a good school for her, and how it helped me "see" my child.
Camp - I managed to find and afford a wonderful summer for Ana. This was eleventh hour insanity and some groveling, but she'll be with other peers having an amazing summer!
Vacation... - It's finally coming together, and I feel good for throwing myself into the contest so wholly. I'm looking forward to that break when it comes!

Is it any wunda???(cue David Bowie) that I have found a collection of gray wiley hairs growing? I plucked 4 of them to Ana's fascination on the way to Bay St. Louis yesterday, and yet, there always seemed to be more. Things are just plain nuts right now but there's a lot of good beneath it all...and I've made some good things happen too, maybe at my own expense. But let me tell you people, that cabana boy better invest in a new pair of huarachi's (sp?) and stock up on some paper umbrellas cause mama's gonna have him walking some holes in his shoes with the fruity drinks come May.

Now for part 2.

2009-03-11T18:50:00.002-07:00

Ana got in C0untry Day! I'm very excited, but tentative. We still need to learn about the financial aid.

Notification

2009-03-11T18:50:00.001-07:00

I thought I'd be notified today about our top choice for Ana's kindergarten, but lo, the letters are only MAILED today. Argh!

Our big news today is that Elliot's hearing in his left ear is the same as it was when he was 6 months old. That is something to celebrate indeed. It really put my kinder anxiety into perspective for me.

Here's to more good news?

Notes from the mom of a five

2009-03-11T18:50:00.000-07:00

This is not the big *drumroll please* moment where I announce Ana's new school. This is just the nuts and bolts behind our choices, just in case it might help someone else. I want to type this up before I'm biased tomorrow, when we are accepted or rejected at another program.

1SL (1nternational School of Lou1s1ana) was originally our first choice.
Pros: Spanish language immersion, diverse population (culturally, economically, not so much ability), FREE.

Cons: key administration still learning and creating; not as much of an issue with Ana (who can roll with the punches), more of a concern for Elliot; curriculum's only creative piece seems to be language. Nothing particularly innovative about the teaching.

Bottom line: I don't have the energy to "help create" a school, although this one would be a worthy candidate. It's hard enough to find "quality teachers." Add second language proficiency to the mix, and you substantially limit your pool.

Where we are: #62 on the waiting list. I'm told 1st grade is easier for entry (although I think it would be very challenging to be a new student amongst others already more fluent in the language). It is remotely possible that our number might come up.

************************************************************************************
C0untry Day was a non-choice until I remembered my limited experiences with the program through my friend Niki's work at their summer camp, and my former boss' work on their board.
After the tour, I was hooked.

Pros: mixed-age kindergarten (K-2) in the a.m.; contructivist approach; no grades--everything within a context (to me, the best segue from Reggio, where passion for learning is the motivator); amazing library; mealtime centered around relationships...

Cons: Cost (we will have to receive SIGNIFICANT financial aid); homogeny; big class differential that makes me wonder if our family will "fit"

Bottom line: This is my first choice. I can't reconcile my concerns about how comfortable I may or may not be vs. how well this curriculum suits MY child (not every child, and not all my children...ANA). This is a match for her.

Where we are: She's been tested (WPSI-III), we've had a playdate, they've visited her at AH, and tomorrow we learn about acceptance, and financial aid.

+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
Before I enumerate our plan C- A word about the ISAS schools and their screening process (testing, play date, school visit): It makes sense if a school can afford it. Each part is one small piece; I hope that not too much weight is given to each piece for their sakes. With Elliot's special needs, I certainly wish that something like this were in place to give a full picture of who he is. Instead, he's a name, a social security number, and a list of "needs." And yes, he's a child. And my wish is that a school will want him because every child can learn and has value. We'll see how his process goes.
*************************************************************************************
Our other visits in a nutshell:

*St. Chr1stopher-Convenient, affordable, resource room for children with special needs to get help, warm. Traditional curriculum. This will be our first call if CD falls through. Another pro: Gabby & Alex attend.

St. Anth0ny of Padua- highly innovative Montessori program through 1st grade, diverse, low-to moderate tuition (high for us). "sacred" feel: very quiet (vs. joyful?) but kids were engaged. Admin balked at special needs question; not an option for a "family school" for us. Ana also more joyful and constructivist in her approach. No added value for the extra tuition.

St. Agn3s- My old school. Nothing has changed. Uninspired, unfortunately. Low tuition. Not an option.

St. Franc1s Xavier- Worksheets R us. Uninspired approaches, low to moderate tuition. Resource room for kids grade 1 and up (this teacher seems great). Needs a curriculum lift. Not a bad choice for the kids. Not excited about it.
************************************************************************************
Haven't visited & Here's Why:

H1ll School- I've heard great things about their program from credible sources; my concern is their desparate attempts at enrollment, and lack of chief admin. I wonder if they'll be around long, and who wants to do this again.

Haven't visited but wonder:
St. Ge0rge's- might be a good family school (resource room)...would need hefty scholarship.

H0ly Name- heard scary stories about how they teach "pro-life" values; otherwise low-to-moderate income + developmentally appropriate practice. Likely to give them a call if others fall through, but wonder if they've filled up already.

Other Option:
Enrolling Ana in Haze1 Park, where Elliot will likely attend. Public school; unsure of approach to curriculum. I need to visit.

Ready:
To occupy my free brain space with other thoughts.

CHange of mind

2009-03-11T14:42:00.003-07:00

Elliot just said of his decision of a green popsicle:

Actually, I think I want yellow.

REALLY. (-;

Name Change

2009-03-10T17:02:00.001-07:00

A: Mama, I wish my name was Erin.

Me: Why, baby?

A: Coz I want you to say, "Erin, it's time to run some errands."

Me (LOL): Is that the only reason?

A (nodding): Could you say that to me sometimes?

Kinder Roulette

2009-03-09T20:25:00.001-07:00

Step right up, people. This is the greatest show on earth!

High Drama! Teeth-chattering suspense! Death-defying feats! All right before your very eyes!

On Thursday, we'll find out if our first choice for Ana's kindergarten will work out. Will she "be accepted???" Will our family still be able to buy groceries after the "tuition contribution?" Will she be scarred for life from this choice???

And if the answer to the first two is NO--
then,
-What will we do???
-Where will she go??? Which mediocre program will we sign up to join?
-What more could I have done??? Clearly, two choices is NOT enough???

And of course, the answer to number three, the "scarred for life" one, will never be YES.
Our daughter is confident, smart, creative, loving, and thoughtful.
No matter what happens with this schooling choice, this week or later this year, Ana will be fine.

Ana will be fine.

Of cementing teeth

2009-03-05T14:58:00.000-08:00

I find myself struggling with one of my fundamental parenting beliefs coming to light. I've often said, maybe too casually, that "parenting is the process of letting go of your children over time."

Easy to say when two of my young children are essentially under my direct supervision every day, as charges in the childcare center I direct. They've been right there, with me, the Fly on the Wall, who'd buzz loudly when things could be better or different.

But things are definitely changing from within, and from without. I'm gonna need someone to hold my hand.

In this, the year that I turn 35,
-My oldest daughter will go to kindergarten. There was a dawning of her growth into another phase of her childhood around her 5th birthday last December. Despite the elongating of her features, and changing of her body, it was the cake with the bold number FIVE on it that screamed to me, "She's growing up, dummy!" Every day, just growing up. Around this whole period, I've learned so much about her...looking at SO many kindergartens that just wouldn't fit. I could feel their academic preparedness squeezing the creativity, and imagination, and Ana-ness out of her. Beyond the fear of not making the right choice for my little one, there is the fear of the move into big school itself. The move away from me, my eyes, my influence. Into a space that's all about her.

-This daughter of mine has lost a tooth. And the one next to it is wiggling. This was the tooth we watched grow a millimeter at a time. The one we celebrated, photographed, showed off, and brushed...the lone inhabitant of her gummy baby grin. I would rather her have cavities, I think, than proudly display the whole in her smile where her "baby tooth" used to be.

-My youngest boy, our wonderful surprise, has a tooth coming up in the same spot where Ana's jus fell out. And the tooth next to it is crowning. This is the tooth that we are watching grow, one millimeter at a time. The one we will celebrate, and photograph, show off and brush...the lone inhabitant of his gummy baby grin. *Sigh* Do you see where this is all leading?

-And my son Elliot, our lover and our fighter, will likely go to a program for 4 year-olds. He will be placed with typical 4 year old children in a school with a special needs preschool, in case he struggles too much. His teachers will have his IEP, and I'm to trust that it will be implemented. I will put him in the car, and I will bring him to his classroom, and I will leave him there for the day. Hopefully, someone will tell me what kind of day he had, what he learned, what therapies were implemented, if he made a friend. And I'm to trust that he is treated with compassion, that he will not be teased or harmed, that when he's stuck, someone will help him. When he can't hear, someone will notice. When he is sad, someone will care. The drive away from this place? I don't think I can make. I think I will be in the bushes, or apply to be the cafeteria lady. Almost everything I've done since Elliot has been about Elliot. And now, there he goes. And please don't tell me he'll be fine. And please don't tell me "parenting is slowly letting go of your children," because I won't be able to control my tongue. I don't know if I can let that baby go. I really really don't.

So what do I do, when cementing their teeth won't change this: they are growing, and moving slowly away from me. There is a hole in my smile.

4 headlines, 2 stories

2009-03-02T20:04:00.000-08:00

Headlines:

Ana's lost a tooth where Ollie is growing a new one. She's really growing a tad too fast for me these days.
We're pulling together plans for summer camp for Ana.
I successfully took the three kids out to eat. By myself. And had a nice time.
Our plans for Honduras are almost finalized!

Stories:

-Elliot is pre-registered for a typical 4 year old class at Haze1 Park Elementary in River Ridge.

-I have no plan C for my daughter's kindergarten if plan B falls through. Feeling less on top of it than I was in early January.

A milestone a minute

2009-02-28T21:09:00.000-08:00

Oliver is now sitting up with minimal wobble and the occasional face plant.
And a new tooth is budding from below!

The camera died, so just close your eyes and imagine!

Welcome Baby Freddie!

2009-02-26T19:06:00.000-08:00

Congratulations, Charlie and Erin on a healthy, beautiful baby boy.

We are eager to share in the next phase of your lives with him.

Elliot's Hearing

2009-02-25T21:02:00.000-08:00

Test- inconclusive.
His ear drum has "sucked in," possibly a result of the fluid in his ear two weeks ago.
This means the test is showing a mild-moderate hearing loss.

Although I don't detect a great shift in his ability to hear us, all my recent CMV connections and reading has me believing that my son is losing his hearing, and like so many others affected by congenital CMV, he will lose all his hearing at some point. All my preparations will assume this to be the case (I originally sought Br1ght school out for this, and somewhere along the way, got used to the idea of a hearing child with developing language...)??

We have another ENT appointment in two weeks to look at the eardrum, and see if it's OK for another hearing eval.

Honestly, I am not hopeful.
About the test.
I am eternally hopeful about my son. Despite every challenge, he is full of love and life. Stay tuned.

#62

2009-02-25T21:00:00.000-08:00

In our struggle to find a good kindergarten, we have two choices, both with "cons." One day soon I'll document the whole thing. Right now it occupies so much of our thinking that I just leave it be.

Today we found out the free immersion choice held their lottery.
We are #62 on the wait list.
I don't believe that is a choice anymore.

It's Time

2009-02-25T20:57:00.000-08:00

9 months and one coconut costume later, Erin is ready for Freddie!
Doctor says tomorrow is the day.
I'll keep you posted. I can't wait!

Journal for El

2009-02-22T21:00:00.000-08:00

2/22/09
dinner- veggie tacos (brocolli, cauliflower, fresh mushrooms, tomatoes, olive oil, cheese blend, sour cream, salsa on a flour tortilla); 3 oz. skim and some pomegranate blueberry juice

threw up-1 hour post-dinner

at bedtime- lots of sneezing and mucus

other- activity and attention level strong; lots of finger-mouthing.

2/23/09
am diaper- loose stools

lunch-zatarain's jambalaya with turkey sausage, green salad w/ poppy seed dressing (tomatoes, brocolli, romaine, mandarin oranges); water.

reaction- while eating, rash around the mouth

behavior pre-lunch: active, happy
behavior post-lunch: tired (late lunch), defiant, cranky for the rest of the day ;

dinner-not very hungry. ate wheat bread and some pulled pork.

reaction- rash around face throughout the evening. unsure if it's related to food.

other-lots of finger mouthing & object mouthing; lots of mucus (appears to be getting a cold, or having an allergic reaction to food); wet breathing at bed-time.

Because I could not stop for Mardi Gras...

2009-02-22T10:45:00.000-08:00

She kindly stopped for me: Mardi Gras re-enactments this morning...I look like I had a few too many...
King Kevin, reigns over his happy kingdom!

Ana & Elliot bombard us with throws!

Workin' on that aim, lil' mama! Ana is starting to feel better.

Maybe we'll make it to Fat Tuesday for real!

Oliver is 5 months

2009-02-18T21:01:00.000-08:00

When I think of my little guy, one word comes to mind: pleasing.

Everything about him is so pleasing. The roundness of his soft cheeks, the warm dark honey of his eyes, the chubbiness of his thighs and bottoms, the floppy largeness of his ears, the swath of hair (the combover in the back), the way he reaches for me, his loud vocalizations, the crinkle of his nose when he smiles and locks eyes...it is all so very pleasing to me.

Oliver is now almost sitting up...lots of falling over but LOVES the new perspective. Yesterday, he discovered his feet (which is REALLY funny to me because he discovered Evan Roux's feet two days before that...is he so chubby he can't see his toes(-:)???

Oliver is very vocal, and has a lot to say, especially when it's time to eat and he sees the breast! Loud, grunty, sing-songy sounds make us laugh and smile.

He's swiping accurately, and grabbing anything around. He's tolerating greater stretches of tummy time. He has rice cereal once daily, although his doctor just approved us to bump up to two meals per day, and add fruit and vegetables! It's so exciting, all the tastes in the world! I'm happy to share them with him and see how he responds.

Here are his stats:

ht: 27" (75-90%ile)

wt: 20#11oz (>95%ile)

head size: 44 cm(75%ile)

pneumococcal and Hep B vax

Strep/UTI/Virus Saga

2009-02-18T20:58:00.001-08:00

Because I've watched every cartoon in creation...

Just to have a record-

Ana-fever and tummy ache, 2/3-2/8
Vomitting/diarrhea, 2/9-2/11 (strep diagnosis)
Blood work 2/10 (UTI)
Blood work 2/13 (clean); back to school, symptom free
bm 2/17
fever and tummy ache 2/18 (virus)

For the good doctor

2009-02-17T23:14:00.000-08:00

Hi Dr. Demmler,

I just posted to the CMV list-serv about our 3.5 yo son Elliot. My recent concerns are related to progressive hearing loss. I've read recently about a study you were involved in that compared SNHL in symptomatic and asymptomatic children. I was hoping you could help me by answering a couple of questions.

1. What determines if a child is symptomatic or asymptomatic? What are the symptoms (mom's CMV symptoms pre-baby)?
2. Our child gradually (complete loss in rt ear by age 2) lost his hearing in one ear. The other remains healthy (testing again next Wednesday). Does the loss, and progression of loss vary and fluctuate? Of course, we are hoping his loss is unilateral...I thought we were out of the risk zone but it doesn't seem to be the case.
3. What causes the progressive loss? Does it have anything to do with the shedding of the virus when reactivated?
4. WHat can you tell me about Glanci--?
5. Do you know of a doctor in the New Orleans area with a strong interest in CMV? Should we consult regularly with a virologist?

Any information you can give would be helpful.
Emmy
Mom to Elliot (3.5)

Cause I only want to write it once tonight

2009-02-17T22:55:00.000-08:00

A cut and paste from my posting tonight on the CMV list-serv through Syracuse University:

Hi folks,
Thank you for all the information, and warmth, and love(-;

From the sound of our post, you might think that we're new to cCMV, but our son was diagnosed 3 years ago at the age of 4 months. We initially inhaled every bit of information out there, but at the time, we were so overwhelmed with our feelings, and setting up initial supports (therapists, appts w/ specialists et al)I don't know what I remembered. I was just trying to get down all these names with Latin roots...micro-what? cytomegalo-what?

I had originally posted here (or on Baylor's list-serv?), and connected w/ a mom near New Orleans. I tried to set up a playdate after reading her blog, and she had to inform me that her daughter had passed. This made me feel so hopeless and desparate...I had to opt out of the list-serv thing. It felt noisy and dark.

We've spent the last 2.5 years relying heavily on a great support system of therapists, teachers, and specialists. And had let go of so much of the fear just from watching him overcome so many of them...and I know this will be the case despite what future challenges lie ahead.

But recently, stumbling across CMV info about hearing loss (I NEVER read up on this stuff), I felt like our neurologist doesn't fully understand how the virus behaves, and that we were led to believe that his potential for future hearing loss was nil. This has made a tremendous shift in my thinking, and reliance on doctors for information. I've known since Elliot's diagnosis that I would always be an advocate for him, and I have been...where I felt like his RIGHTS as a child w/ spec. needs were concerned, I have educated and advocated. Where other parents struggled with their own diagnoses, I've championed early intervention...but as far as intimate knowledge of CMV, I assumed (wrongly?) that the damage is done, and have relied on medical experts to tell us next steps.

So now my thinking:
-I need at least one doctor who is intrigued by CMV and keeps up with the current research on it.
-We may need to consider Glancl? for slowing hearing loss.
-We probably need to learn ASL so we're not blindsided by the loss of "his good ear."
-I need to consider other possibilities for GI issues.
-I need to connect to the larger community, to learn what I can, learn from others' experiences.

Thank you for sharing your stories. I need to dig back through and connect with you...although I did check out Project Jack, and was moved to tears in my office in a broom closet in a hundred-year old New Orleans cottage on a street that rolls right near the Mississipp--and said, damn, that's just beautiful. Thank you for sharing that.

I'm coming around but I'm generally overwhelmed. I have three kids (my daughter Ana is 5, Elliot is 3.5, and baby Oliver is 5 months old today!), and I direct a non-profit childcare started by parents after the storm. My children go there, so it's highly motivating (and convenient where therapies, interventive strategies, etc are involved), and it keeps me very busy. My husband works nights so our lives are pretty cuckoo!

We have a blog that I'd love any of you to visit: http://lospininos.blogspot.com.

And Dr. Gail, if you're out there, can you refer me to a doctor in the Greater NO area? If I don't hear from you, I'll contact you through the website.

Thank you, everyone.
Emmy

Mighty Aphrodite

2009-02-15T18:09:00.000-08:00

Forget the creationism vs. darwinism debate. Greek Mythology has really captured Ana's imagination. Her decision to be Aphrodite came from a long curly pink wig of mine, and the suggestion that she dress as Medusa. She was completely horrified at the thought. Especially since I've shown her the clip from Clash of the Titans on youtube (remember root canal vs. Medusa?)...

When she pulled out her old Cleopatra costume, those drawings of the goddesses immediately came to mind. She announced she'd be the goddess of love...and got to dressing up...

I thought of Botticelli's Birth of Venus, and we found it online. She wanted to draw it. Can you see what it looked like? The shape beneath the feet is the shell. Ana liked hearing that she rose out of the sea...

Mardi Gras to do

2009-02-15T18:02:00.000-08:00

For Krewe of Abeona

Get RIT dye & spray paint to update costume
Buy new eyelashes and possibly a new wig
finalize food donations with Juan's/Slice
flier Oak Street neighborhood
contact Marilyn
decorate kids' wagon
figure out El's costume? Ol's costume?
finishing touches for Ana' costume (she announced today: Aphrodite. or 2 yrs ago, her Cleopatra costume)
sort through last years' throws for easy-to-untangle stuff

For Mardi Gras Season

Secure plans for Wed night, Muses (Thurs), Saturday night (Kevin is OFF for Endymion!!), Thoth (Paul & Holly?), Sunday, Lundi and Mardi Gras
Buy juice boxes, chips, cold cuts, fruit
Wash down foldable chairs; pack in car
Organize costume chest (wigs and sunglasses, costumes, and hats)
replenish diaper bag
de-cobwebify the ladder

My funny valentines

2009-02-14T20:26:00.000-08:00

Ana's favorite valentine gift: The YOYO ball
Emmy & Kevin's favorite valentine: Elliot playing a love song WITH LEFTY!!

Tita's favorite valentine: time with Oliver

Love the 4 month tummy poses!

xoxoxo to you all!

Second Verse, same as the first

2009-02-13T15:05:00.000-08:00

It seems like the lesson as a parent I keep revisiting, is to JUST WAIT OUT those developmental downswings...they usually precede a growth spurt...

but whilst my love Elliot was

running and hiding under the house every time we were in the backyard (my respite)

staring blankly

mouthing his fingers deeply

pinballing from activity to activity to activity

shrill-y screaming

pushing me away

all I could think was "Maybe this is as far as he goes," and "What is wrong with him???" and "What did I do wrong? What more could I have done?" This has gone on for about 6 months. I've struggled to even own it in my writing, but my worries have been a dark cloud overhead for some time now.

And like Cher slapping Nick Cage in "Moonstruck"--they just seem to SNAP OUT OF IT! Suddenly, there's my sweet boy again, doing a host of new things:

swinging (holding ropes with two hands, walking backwards on his toes, and lifting off!)

speaking in long sentences

discussing sequence, and understanding his place/turn/order

saying he has to potty**

trying to dress and undress

exhibiting gentleness with his baby brother

asking for time with me, snuggling

attending for longer periods of time
Lefty whole hand grab and release! WOW!

I try to remind myself when my children are on "the upswing," that this is their developmental path--intense regression with leaping forward...and I need to keep that in mind as we look toward kinder with Ana. That worry and doubt and fear gets in the middle of the relationship, right when they need the most unconditional love and support (and of course, the frustration I feel makes me less included to be the patient mom I know I can be). I need to work to develop this perspective on their growth and development...the experience that helps me relax with all of Ollie's baby stuff, knowing what to expect. After all, this is what sharing a life is. And they are watching me pull in and out of the fog as I grow too.

We're all in this together. And we're all we've got.

The Greatest Fan of your Life

2009-02-13T13:54:00.000-08:00

I will truly miss
entire conversations
dissecting what
"your crying soda"
might mean,
and why that would be considered a love song.

You're growing so fast, Ana.

Dem rolls

2009-02-13T00:58:00.000-08:00

Ana says when goo-goo-ing Ollie, and pinching his chubs:

These biscuits just have too much dough, yes they do!
They are just too much for me, little guy.
I think I need some butta!

Grand Prize Winna

2009-02-10T19:51:00.000-08:00

Hi Emmy,

On behalf of HomeAway, CONGRATULATIONS on winning the “Why I Deserve a Getaway from HomeAway” contest. We look forward to helping you find and book the perfect rental home for your next vacation.

In order to facilitate the reservation process, please identify three properties from any of the HomeAway Web sites that you’d potentially like to stay in for your prize vacation, including your preferred travel dates. Searching by availability will help you eliminate any properties that might already be booked during that time. Also, if you’re planning to travel during the “peak season” of a particular destination, we recommend selecting your dates as soon as possible so that you have a greater selection of properties to choose from. The number of guests you can bring with you is dependent on the size of the property you decide to stay in. You can find some great homes within the prize value that will accommodate more than just your immediate family. In fact, having additional space is one of the many benefits of staying in a vacation rental property!

Once you’ve selected your favorite homes, I will work with the property owner to book your reservation.

In the meantime, please do not hesitate to contact EB, Director of Global Public Relations, or me if you have questions.

Once again, congrats!

Sincerely,
JD
******
Two things:
1. Wanna help me look?
2. Who's comin' with me?

Lassez Les Bon Temps Roulez!

2009-02-08T05:44:00.000-08:00

Krewe du Vieux last night was the best "grown-up" time I've had in a long time, and a great way to kick off the carnival season...which will from this point on, consist of packing multiple snacks, hauling a ladder, to and from the cars, calculating best vantage points x bathroom locations, etc. So last night it was all about titillating floats, cold drinks, comical costumes, and banter with good friends. Here are the highlights (lowlights would be a picture of me, this morning, nursing an iced coffee with black mascara under my eyes, but hey- there's no one around to snap me!).

We started at the R Bar on Royal, and I couldn't pass up the chance to

photograph the barber chair that I associate with lots of fun (and trouble) in my

pre-married days...

A couple of brass bands...there were great costumes and rowdy floats too, but typical me...I got the back of everything; I'm never ready.

This was the coolest thing ever: A mobile drum circle with a cross-dressing cheerleader atop. And they were rollin'! This would've been one to follow, but we were off to Mimi's!

At Mimi's...we'd gone there to eat, and were a little disappointed at first because it's more club with tapas than sit-down meal. We put our forks in our pocket (note forks in pockets blaring speaker in the heat and tried to have the fun we really wanted to have. All we had to do was be patient (and drink more!)

Hey! That's my fork!

Ready? Set! Go!

Well, the tapas came out of the kitchen--little plates of manchego cheese with sauteed mushrooms on toast, calamari in cream sauce, cooked down stews in rich sauces, and we passed them around, along with more beers, forks out of pockets, and shared delicious morsels with friends and strangers to the pulse of loud music, through a smoky haze of liquor and dissipating inhibition... a uniquely New Orleans moment that I was happy to have.

And how could I not resist a pic of Denice and Dave getting a ride to their car in the back of Paulette's mini-van. At least last night I would've dubbed it The Party Wagon.

I am all about some more grown-up time with my friends, and more of these kinds of Mardi Gras moments...It's great to be in good company.