Bubba: A photographic essay

It has been almost 3 1/2 years since Bubba Grizz came into our lives. He arrived into Camille's care on Christmas Eve, 2004, when Camille was a tender 5 1/2 months old. Though Camille and Bubba were nearly exactly the same size at the time, she did have a bit on him in terms of weight, as we all know that muscle weighs more than fluff.



Bubba was actually shipped from Lebanon, PA from Uncle Tim, who thought that Camille needed a bear to tote around after her in her young life. Uncle Tim went to the Boyd's Bear Barn, the home of Boyds Bears, in Gettysburg, PA to find a match for Camille.



It has proved to be a match made in heaven. For any of the rest of you who have ever heard or read the story of the Velveteen Rabbit, you will understand me when I say that Bubba is on his way to "Realness." He already has a scar from being stitched up in the back, he is asked for by name, and he is talked to as if a person.



I have to admit that I feared this day would never come. Visually impaired children notoriously have delays in their pretend play skills. It is suggested that this is because most children pretend play because they see things happening visually around them and translate this into their play. Obviously if the visual input is missing, it can take longer for pretend play to occur.

However, once again, Camille has risen to the occasion as evidenced by the following conversation stream which I witnessed as an outsider.





"Hi, Bubba!! Would you like me to hold you up in the air?"


"Here, Bubba. Sit right next to me on my right side. It is time to read a story."



"Bubba, we are going to read "Give me Grace." Okay, let's open the book."

"Bubba, it is time to wake up, okay? Camille is reading you "Give me Grace."

"Bubba is holding the book!"

"Smile, Bubba. Mommy is taking a picture."

"Here, Bubba. Come sit right here on my lap."

"Bubba's hair is dry."

"Bubba, you can play Jumping Beans after we read the book."

"Okay...one...two....three....Jumping beans, jumping beans, jumping jumping jumping beans!!"

"Here, Bubba. Would you like me to carry you?"

Needless to say, Uncle Tim's wish has come true. Camille has a forever friend in Bubba Grizz.

Storyteller

I have a little storyteller in my house. Acutally two of them. But tonight was the first night I had seen Liv pretend to read.

Actually, check that. Last night was the first time.

Granted, she's looked at the pages and pointed at the pictures, talking feverishly about them, for quite sometime now. When she sees an 'O', she says, "oooh! That's Olivia!" or an "A," "That's Aiden!" The big difference now? Now, she's making the literary connection and pretending to weave a tale from the written word. Preliteracy! I, in my very nerdly fashion, am very excited by this.

So last night, I made homemade quesadillas (which, if you refer to my blog entry on deception, will understand that I stuffed with butternut squash, navy beans, chicken and cheese--BTW: Bill gave a thumb's up, Camille wouldn't touch them). At any rate, I got out "the quesadilla sauce"---drumroll please----a bottle of ranch dressing. Liv of course launched into a one sided conversation about "what is that quesadilla sauce oh that looks good can I try some please put it right here." Then she stopped, pointed to the words "Hidden Valley Ranch" and said, "oooh! Look. It is quesadilla sauce. It says so right here." Needless to say, I didn't burst her bubble, and she was so feeling important that she was "reading". It was fabulous.

Tonight at story time, she grabbed off of my shelf, "Life's Little Instruction Book." In my cynicism, which was at an "I'm tired because it's Friday night" peak said inside my head, "Oh, that'll last long without any pictures." And....as always, my children proved me wrong. Liv asked me to read several entries and then said, "Here, give it to me. I read it." She tenderly opened the book and started her story weaving, "And then we go up to the mountain and ABCDEFGHIJ He's got the whole world in his hands and JOY JOY JOY JOY." And as she was 'reading,' she kept flipping the pages in a very adult-like seriousness.

My memory jumped back in time probably 27 years. Eeeek! I actually remember sitting on the couch in our living room, knowing that mom was picking up around the house and occasionally walking through, having the opportunity to see me. I had open on my lap a book of Disney's Favorite Tales, which had rather lengthy, small print stories inside. I actually though that if I ran my finger along the words and murmured the story to myself, she would think I had magically learned to read overnight. And I felt so grown-up. And I thought she believed me.

I bet that's how Liv felt, too. So Bill and I played up every moment.

Thanks, Mom, for giving me the love of literacy so young...because I somehow have managed to pass that along to both of my girls. Someday maybe the girls and I will sit in Barnes and Noble and chat about our favorite novels, just as you and I have.

Mounds and Braids

Oooop! Watch your step.

It's another mound. A sure sign that Livvy has been making the rounds.

The untrained eye may think that it is merely a blanket, abandoned on the dining room floor. Not me. I know better.

Under the blanket, something is sleeping. Livvy is going through a caretaking stage right now, and the theme seems to be tucking items into bed. Even though it's not bed. It's the middle of the dining room floor.

It doesn't really matter if an item would really take a nap or not; Livvy tucks it under the blanket to sleep. For example, her babies, Pooh Bear, and her beanie baby "Cocoa" would surely need tucking into bed, so it is common to find these things in her mounds. But, she also likes to tuck in inanimate objects such as the fake tomato that goes with her kitchen set and the bowl of grapes that somehow disappeared after snack.

It cracks me up. I find these mounds everyday. Everywhere. In the bathroom, the entryway, the bedrooms. Under the table and in my scrapbooking corner.

So, the next time you come to visit, be careful and don't step on the mounds. Oh, and tread lightly; whatever is under there is probably sleeping.

P.S. My postscript today is for you, Brookie! Camille donned her braids for school today, and since I know that is your favorite hair-do for her, I took a picture in your honor. We love you!

The 'A' Team

Before you read the rest, I am going to tell you there is a great story at the end.

Okay, now I have to do some bragging. Okay, well a lot of bragging.

When it comes to a teaching team, Camille got the top squad. The "A" team. The magna cum laude of preschool classrooms. The "all that and a bag of chips" group of mentors.

Camille had a rocky start to the school year. She wanted to go. She's already learning. But the darn phantom of prematurity threw her another curveball again as she seemed to have two seizure episodes in Mrs. Miller's class on her 3rd and 4th days of school.

Nothing does a parent's heart so good as watching their child's teachers rally around her and keep on going despite setbacks. And that's what our "A" team has done. How we love them for it.

Mrs. Miller is the incredible head of the class. She loves Camille. She challenges Camille. Without hesitation, she adapts Camille's classroom and when you have the chance to visit, you can see her implementing all of the suggestions that Camille's Teacher of the Visually Impaired has for Camille's education plan. Did I mention she's just a whole bunch of fun? And she's smart and she's kind and she goes to bat for the big C, all the while not putting up with any of her tantrums or manipulative behavior. And I get to hear conversations that she has with the class throughout the day as Camille pretends to be her at night in bed.

Jessy is para extraordinarre. The way that she cares for Camille's wellbeing sprigs up tears in my eyes. I kid you not, she would walk to the end of the world for this kid. I've seen her at work in the classroom, and she is amazing, paying attention to details and helping Camille understand with the kindest hand and detailed descriptions. I've also seen her tirelessly in the hallway, playing the fortieth round of "One, Two, Three, Run...run...run" to get Camille to the playround, and that is the heart of a saint at work.

Maria, para last year and school secretary this year, remains a constant in Camille's school life despite her job move. Camille visits her in the office daily and closely examines her nametags and tries on her bracelets. Last year, she picked up on Camille's love for music and burned her a CD of her preschool songs which Camille asks for on every van ride we take. Not only has this acclimated her to the classroom, it has allowed for many a sane moments for mommy in the car. Did I mention she was my conduit to the school when Camille had her seizures? She watches out for my mommy heart.

Pam has taken Maria's spot in the classroom as para deluxe. I've only known her a few days, but I already know I like her. A speech-language pathologist by trade, she now works the para circuit and brings with her Therapy Dog Moses. The coolest thing--she used to raise guide dogs for the blind and already announced plans for a dog for Camille someday. Smile. Isn't that a piece of irony?

Mrs. Headly, the classroom speech teacher. Kind and gentle. Sweet and smart. She gets so excited for all of Camille's progress and I see her heart at work with the kids when I am there. We all just feel better when Mrs. Headley is around, so if you ever need a pick-me-up, give me a call and I'll take you to meet her.

Jill, Camille's Occupational Therapist in the classroom, may as well be wearing a cheerleading sweater with a big "C" on it. She coaches Camille on with utmost enthusiasm and motivates her to do things in a way that only Jill can. And this year, we get to welcome back Amy as Camille's PT. Yeaaaa! Amy used to be with Camille when she got services at home for birth to 3 years.

And last but not least, Camille's Teacher of the Visually Impaired. We welcomed Carrie into our lives this summer after Beth left, and she's made our transition-- what could be a highly stressful change-- utterly flawless. She is amazing with Camille and she hit the ground sprinting this school year. It's PDS (Pretty Darn Special) when she already has personal copies of all of the stories for the year ordered and ready to be brailled. And has made large, simple illustration cards to go with the story for this week. And has plans to get story boxes together with all of the items in the boxes...to share with us at home as well as to use at school. Oh, and my heart melted when I saw that all of the teachers have braille on their nametags. Because of Carrie, my heart is still and I know that Camille is in good hands.

A high point after the trough of seizures came yesterday when I picked up Camille after preschool. The whole team was on high. Camille had not only asked to pee pee in the potty but had actually done it. Additionally, she rode a tricycle with assistance for ten minutes. The way they were seeping happiness, you would have thought they were the parents! Can you get much better than this?? I challenge you.

All of these amazing people, along with Mrs. Hinman the principal and Kerry and Sharon who work in the school health office, have made the medical setbacks bearable. I count my blessings.

And I don't forget even for a moment Jayme and Beth, her first two Teachers of the Visually Impaired, who are now gone but have helped bring her to where she is today.


Cool Story at the End:

This has nothing to do with my blog topic unless you tie it to cheerleading and enthusiasm. Tonight, after being in bed, Camille called to me that she needed to go potty. Common attempt to get out of bed, but we honor it once. Tonight, she actually did pee. Whoopeeee! And then she said to me,

"Way to go sista momma!"

I think this is somehow translated from my attempt to cheer her on in previous potty attempts with "Way to go, sister!"

Alas, I must close and go down the hall. I think I hear her out of bed....lots of clunking around in her room. Did I mention it's 10:30 p.m.? Sigh.

Scrap Therapy

Yesterday, I had a major dose of scrap therapy. As in scrapbooking therapy, for those of you who don't dwell in the cult of funky patterned paper and too-cute embellishments as I do. Most people, when I announce, "I'm going to scrapbook all day at a 12-hour crop on Saturday" say, "You're kidding, right?"

But there's this possy (possie?) of us who know that scrapbooking for twelve hours straight is not only quite possible, it is utterly wonderful and ends up being too little time instead of too much. As an added bonus, it ends up being cheaper than real therapy if you exercise a little restraint.

At any rate, off to Archiver's I went, totes, personal trimmers, adhesives and photos in tow. And it proved to be all I hoped it would be.

I was reminded of the many reasons that this, with reading a great novel at a somewhat close second, is my favorite Jen-only pasttime.

• I get to exercise a little creativity. Scrapbooking is perfect for me as I can be a little original, but I can also scraplift other people's ideas and add a personal flair to make it look like I thought of it all by myself.
• I've always loved art supplies, but I would have made a horrible painter or sculptor. With scrapping, I can dabble in all of the supplies and artsy-tartsy mediums and pretty much just rearrange them to look cool. In essence, I feel like I'm being a real artist.
• It is a great way to link up with another of my VERY amateur hobbies: photography.
• I can incorporate one of my other favorite hobbies, writing, into my scrapbooks to tell the stories my girls will either love me for or hate me for later.
• In sifting through my photos, creating layouts, and journaling about the stories behind the pictures, I get to reflect on the moments and the people in my life and realize again how blessed I am.
• Sometimes I'm a solitary scrapper, but yesterday, I got to hang with two great friends while scrapping. (Thanks Wendy and Abbie!!) (Oh, and sorry you had to sit catty-corner with the geriatric group, Abbs).
• I won a prize, albeit a tiny one. Pink crystal gems to put on the pages to be exact. Good thing I have two girls.

I wish I had a good scanner so I could share some of my layouts with you, but alas, my scanner has an inferiority complex so you will just have to make due with descriptions until you come to the house to see them for yourself.

I was pretty excited with what I got done; I finished Camille's 8x8 album of the 4-year photos Jacki Franzen took of her and Liv (I think 7 8x8 pages) and I did 7 12 x 12 layouts for Camille's book from the NICU. Yeah, be quiet. I know that means I am four years behind. But....what a cool thing. To look back at her three-pound self four years ago at this time (when she was a month old) and see how far this girl has come!

And thanks to my great hubbie. Because of him, I am able to carve out 12-hour "just for me" days.

Taking Care of Me

The coolest thing happened on Tuesday night.

My four-year-old and two-year-old took care of me when I couldn't take care of myself.

On Tuesday, I had an ugly moment. The world came crashing down. Three weeks of trying to be strong and plowing through undesireable issues, both large and small, finally did me in.

In short, there were alot of tears. Yep--the faucet suddenly turned on and then just wouldn't stop running.

The girls were a bit perplexed. Who was this sobbing lady and where did mommy go?

And then the magic happened. Livvy showed immediate concern: "Mommy, why you crying?" That was in the van.

At home the tears were still falling. Camille walked up, examined my face ever so closely as only Camille can do so lovingly, and said, "Mommy is crying. Mommy, what's the matter?"

Oh, Camille. More than you know. But you just made it a whole lot better.

When Bill got home, a hot bath was in order. Naturally, Livvy wanted to follow and chat. The truth is, I really wanted some peace and quiet, but I just didn't have it in me to try a diversion. So, into the bath I went and in and out and in and out of the bathroom she went, busily chatting as I soaked in the bubbles.

Soon, she found my blue bath sherbert and asked that I open it up. "Here, Mommy, turn me around, okay?" Then she proceeded to give me a wonderfully sweet backrub two-year-old style. And followed with lotion to boot.

I love you two. Thanks for taking care of me when I'm supposed to be taking care of you.

Number Eight

Today is the eighth anniversary of my marriage to Bill.



It's hard to believe it's been eight years since we were married. It's hard to believe it hasn't been more.



I guess it's safe to say that eight years ago, on this day, we had no idea what would be in store for us. We only had dreams. And though some of the details didn't pan out as we would have expected, the general theme did: we're in it for good and for the good of us both. For better or for worse. In sickness and in health. For richer or for poorer.

In honor of the last eight years, here's a little breakdown:



For better:

• We've traveled for fun.


• We've laughed alot.


• We've been devoted jays basketball fans together.


• We bought our first house.


• We moved out of our first house.


• We built a house.


• We've made a home.


• We've had four beautiful children.


• We've celebrated Christmases, New Year's Days, Valentine's Days, St. Patrick's Days, Fourth of Julys, Easters and Thanksgivings. That's a lot of memories.


• We've lived and loved.

For Worse:

• We've dented bumpers and hit city buses.


• We've traded shifts for taking care of colicky babies.


• We've cleaned up spit-up, poo poo and vomit.


• He cleans up my crumbs, I pick up his hangers.

For poorer:

• We've paid for daycare, diapers, and prosthetic eyes.


• College is yet to come.

In sickness:

• We've nutured each other through headaches, the stomach flu, and colds.


• I helped him through surgery for varicose veins, he helped me through two pregnancies and two C-sections.


• We traveled the journey of the NICU as only two parents could travel it together. That it itself is enough sickness for two lifetimes.


• We buried Sam.


• We buried Hannah.


• He was with me when Grandma and Grandpa died, loving them as he knew I did.


• We've been there together for Camille as she battled in the NICU.


• We've conquered words like, "IVH, ROP, cataracts, glaucoma, enucleation, and seizures."
  

In health:

• We were with Camille as she rallied in the NICU and came home.
• We truly appreciate what it means to be healthy. Free of pain. Happy and feeling well.
  

I think it is safe to say that we've been through the extremes more than most couples, but still not as much as some.



And though even our anniversary can't be devoid of tears, anguish, stress and headaches due to events out of our control, I would only choose Bill to travel with on this journey.

And speaking of tears, anguish, stress and headaches, I am seriously thinking of adding a new award to my blog stream to go right along with "People along the Way" (the good people version). My new version would be the "Mean nasty people along the way who are a menace to society and create unnecessary havoc and frustration in the lives of others" award. Though it would be quite contrary to the mission and general theme of my blog, it sure would be liberating to send the recipient an email with the link.

I'd better sleep on that one.

P.S. Just to clarify, Bill is NOT the person I have in mind for the recipient of my new award! :) And neither are any of you who might be reading this.

Okay, goodnight.

My Little Word Nerd

I have one in my house. A little word nerd. A girl who is all about letters, numbers and now, spelling.

Yep, Camille is my alphabet girl.

We visited Grammie and Pappie this weekend in Kearney. They hopped in the van with Camille, Livvy and me to go up to Sumner to see Grandma O'Neill. All the way up and all of the way back, the story was quite the same.

C: What does Grammie start with?

G: Grammie starts with an X!

C: NO! Grammie starts with a G!

G: Oh, duh! I forgot!!


Q: How do you spell dog?

C: D-O-G



Q: How do you spell cat?

C: C-A-T


Q: How do you spell O'Neill?

C: O-apostrophe-N-E-I-L-L



C: Mommy, spell Pappie quickly!

M: PAPPIE!

C: Mommy, spell Pappie slowly!

M: P---A----P----P---I---E

Giggle, giggle, giggle


C: Grammie, spell lasagne! (Too bad she won't eat any).


Before you know it, she'll be asking, "Could I have the origin of the word please?"


You are so inquisitive, my sweet girl. And I love it.

And don't worry. David Cook is a self-professed word-nerd and he reeks of coolness.

School Days, School Days

It happened. Preschool started up again last Thursday. I jumped for joy, literally, as did Camille.





It's not that I don't like having Camille home. I adore it. It's just that right now, Livvy is extremely conscious of how much time I have, how much of it she occupies by herself ALONE, and how much she doesn't. Needless to say, at the end of Tuesdays and Thursdays when it's just me and the girls, I feel very mentally stretched between the two girls.





As an even bigger bonus, Camille adores going to Mrs. Miller's class and I adore Mrs. Miller and the crew.





So, skip back in time with me to last Thursday at 12:25 p.m. CST. Camille and Liv and I are waiting outside Reeder Elementary School for Mrs. Miller, one of the paras Jessy, and the new para, Pam, to come outside and collect all of the four year-olds.





It was a shining moment. As I began to see all of Camille's returning classmates get out of vans or cars, I told her who was in my line of sight....Hunter, Maria, Mia, Noah, and Joshua. Camille's eyes lit up.





And then out came out Mrs. Miller and Jessy. Even I was excited for Camille.





Jessy bent down, gave Camille a huge hug and whispered, "I love you.....and I missed you so much." Sniff. Double sniff.





I was so proud. Some of the other kids were sobbing. Hanging onto their mothers' legs, running in the opposite direction, waving their hands wildly about. But Camille was raring and ready.





Due to the fact that she was back in her CAM boot and there was an extra-special need for crowd control that day, I helped the teachers walk the kids down to the room. I left Camille at the door without a hitch....and then the drama began.





As predicted, Livvy wanted to stay. She felt cheated. Jipped. Left out. She started sobbing hysterically...."I waaaannnnaaaa staaaaaaay with Mrs. Millllllllllllller!"





Someday, too soon, it will be your turn, Liv.

That night, it was too sweet. I listened to Camille as she played in the bathtub. She was handing out bus assignments to her classmates: "Joshua, you are going with John. Adam, you are going with John. Mia, you are going with Al." These are the moments I love. Learning about her day through her pretend play when she's alone.





Now I must tell the not-so-proud moment of the return to school days. On Friday, at about 3:30 p.m., the end of Camille's school day, I got a phone call from Camille's school. Apparently there had been a whoop-see-do with the van schedule to get Camille back to preschool. Never-the-less, I had to talk to Mrs. Miller to get it straightened out. As an aside, she told me that Camille threw quite a tantrum when it was time to come in from playing with the sidewalk chalk outside. She wanted to stay out and make letters. I believe Mrs. Miller used words like, "laying on the ground, screaming, flailing, and "I've never seen anything like it from her." Ouch.





Mrs. Miller chose to view it as a great thing as it is typical child development and shows will, albeit very strong-will, personal expression, and an all-around display of "knowing what you want and the length you will go to get it."





Er...yeah....that's what I was thinking, too.

Sleep Therapy

It is not rare that Bill or I will find the other of us in bed asleep next to Camille at night.

It's not that she needed serenading to get to sleep. It's not that she woke up crying and need to be comforted. It's not that she asked us to be there.

It's our sleep therapy. Our comfort. Our peace.

On nights when we can't get to sleep, thoughts creep in and flip-flop in our mind, or we find ourselves plagued with doubt or worry, we creep into the Ladybug Haven and crawl into bed with Camille.

That's right. Admittedly, it's all about us.

Camille must surely be one of the most peaceful, beautiful sleepers in the universe. Just listening to her steady, sweet breathing makes all the world okay. I often find myself wondering why the many hours of the day can't seem so safe and sure as these moments at night.

But...perhaps they can. Perhaps making those moments in the waking hours needs to be my focus instead of worrying about the weight of the world.

Hmmmm........

At any rate, if you ever have trouble sleeping, come on over, grab a pillow, and find a spot on Camille's floor. Just don't ring the doorbell, or you may find yourself singing several rounds of "The Hello Song" with her by the light of the ladybug nightlight instead.

Weekend Livisms

Livvy tickled my funny bone more than a couple of times over the weekend. While it wasn't rip-roaring comedy and fortunately didn't compete with the hilarity of "The Gina Chronicles," she did give me a few laughs and made me realize that as adults, we really do need to be a lot more like children.



My first chuckle came on Saturday night. In a feeble attempt to wind down, we popped some popcorn in the evening and sat down---sort of---to eat and watch the Olympics. This translated into Liv running around the family room, occasionally snatching up some popcorn while Camille pointedly invested herself in her Word Whammer and tickling Daddy instead of being patriotic. After several minutes of shenanigans, Livvy came up, looked at me in the eyes at very close range, and announced, "Mom, I eatin' a bead!" I immediately assumed she had overhauled my scrapbooking supplies, but she quickly proved me wrong as she opened up her mouth to reveal an old maid which she had resurrected from the bottom of the popcorn bowl. Now if only her concept of jewelry remains this frugal.


Fast forward to Sunday night. In a feeble attempt to get Livvy to get to bed so I could fall asleep reading one Canto of Dante's Inferno and the eleven pages of footnotes that accompany the three pages of text, I let her crawl in bed with me. I turned off the lights, lit a candle, and told her she could stay with me if she lay (laid?---ergh---gets me everytime) down. Well, needless to say, she was mezmorized. That candle was all she needed to get hyped up. Whoops....backfire. She squealed with delight, "Ooooh, mom! It's wigglin'! Oooh! There it went again." Squeal, laugh. Squeal, laugh. "Ooooh, mommy, that was a big one!" She was entirely enthralled. Utterly fascinated. Okay, Jen. Time to stop being mildly annoyed and start basking in the wonder of her wonder. Time to be more like her.

Now tonight. Monday night. Open House night at Camille's preschool, which I might add is a return to her beloved Mrs. Miller's classroom for the second year (which of course had to be celebrated with several rounds of the hello song by Camille upon arriving home). At any rate, Livvy has already watched Camille go to Mrs. Miller's classroom four days a week for a year and return home with obvious adoration. This year just may be too much to bear. Tonight, Livvy told me, "Okay, Mom. Tonight you gonna be a good girl. And listen. I'm gonna go to Mrs. Miller's and stay and you gonna come home, okay?" Oh boy. I can already anticipate how drop-off is going to go Thursday when Camille gets to stay and Livvy has to come home with me.

You can bet there will be candy involved.

You Must See...and Share

I've been keeping this blog topic on deck since my initial entry. For some reason, today felt like the right day. It's been a rough week. Perhaps this is my medicine. In other words, saddle up---this one's going to be long!

As I've written before, the journey of life can be a rough one. It is often filled with twists and turns that we never expect. Joys that we could never have dreamed of. Sorrows that we could have never imagined. Even in the wake of the sorrow, however, there are the people along the way who carry you through. They make life bearable when it seems unbearable. They truly work to make a difference.

I am more than forthcoming in saying that I struggled intensely when Camille started rapidly losing her vision shortly after her arrival home from an 11 week quest for survival in the NICU after birth. My tank was empty. My fuel gone. I was running on the fumes of fumes. I don't know how Sam and Hannah's deaths affected the way I dealt with Camille's visual impairment, but the truth is, it doesn't really matter. At that point in time, I really felt that I couldn't possibly take any more bad news, yet the news came anyway. I now know how it feels to be kicked when you're down.

To be truthful, I was scared out of my mind. I had never met a blind person. The only knowledge I had about being blind was how scared I would be if I lost my sight---after all, as a sighted person, I get 80 -90% of my information through my vision. What would I do if it were gone?

I was embarrassed that I was scared. I felt like I should have been a warrior for Camille, but inside, I was truthfully feeling very wimpy. I hated the acronym ROP (Retinopathy of Prematurity) and the fact that it was blinding my daughter. I hated the fact that I felt scared all day everyday. I hated the fact that I felt so alone. Never did I see a blind child walking along the street. Never did I see a mother in the grocery store with her blind baby. Nope. Blindness in general is a low incidence disability. In children, it's really rare.

One of my first glimmers of hope came when I finally got brave enough to seek out some list-servs for parents of children with visual impairments recommended to us by Paula Korelitz, the outreach director at ROPARD's Low Vision Center in Michigan. I lurked for weeks and weeks...until one day, I read a message from another mother whose child was just diagnosed with a severe visual impairment...and I realized that she, too, was sad. Scared. Lonely. And then all of the veteran moms on the list chimed in about feeling the same way shortly after diagnosis. My heart flew that day. I was not alone. Slowly, through many avenues, I became connected with many blind individuals, parents of blind children, and people who work to improve the lives of people who are blind. And this has empowered me to be able to empower Camille.

Last summer, we got the amazing opportunity to meet some very incredible people who go to work on a daily basis to make life better for individuals with visual impairments and their families. They were undertaking a project that gets right to the core of what I needed when Camille was newly diagnosed with ROP: a way to connect with other families who had been through what we were experiencing, a way to see that there is hope, a way to know that life goes on, a place to go to when I have questions that only others who know about visual impairment can answer. The American Foundation for the Blind (AFB) and the National Association of Parents of Children with Visual Impairments (NAPVI) teamed up to create an amazing website, FamilyConnect.

Please visit it. http://www.familyconnect.org/

The site was officially launced in April of 2008. It is amazing. It has message boards and resources. Articles and videos. Stories and insight. Hope and healing.

NAPVI's national convention was in Omaha last July, shortly before Camille turned three years old, just weeks after her enucleation. Simply because we live in town, we were asked if the staff from AFB could come out and get some footage of Camille in our home. Through this experience, we met a group of amazing individuals who inspire me in the work they do. They inspire me in the people they are. They inspire me in the way they live. Three people in particular, Caitlin McFeeley, Kelly Parisi, and Paul Moniz left impressions with our family that will last likely eternally. Their passion for their work and their compassion was amazing. Caitlin so touched us that we still keep in touch with her.

Please check out their work, the work of many, many people at AFB and NAPVI. It is an amazing resource. Even if your heart isn't all that excited about it, browse.

You never know...you just may meet a family who really needs to be connected to FamilyConnect.....sooner rather than later.

While you are there, view the video about Camille's story.

Click on videos in the first paragraph of the home page, and then click on "O'Neill family" or follow the following link:

www.familyconnect.org/videos.asp?documentID=3986

(Be patient, it takes awhile to load). (Update: Camille has come so far since that video! She's conquered her first year of preschool, is walking, running, talking and singing even more!)

If you want to be moved, look at the other vidoes. There are amazing families there that have a lot to teach you if you are willing to learn.

And all the while, appreciate all of the people who were committed to making this happen for families who really need it.

The "Gina" Chronicles

Okay. As promised when I launched this blog, I bring you the first edition of the Gina Chronicles. And that would be Gina with a long "I".

So here it goes--my first edition which likely falls into the categories "Too Much Information," "Family Secrets That Should Never Be Told," and "Things Your Children Will Eventually Hate You For." But this story is just too good not to tell.

Livvy's fascination with Ginas started several months back. Perhaps it is my background in nursing, but at our house, I pretty much believe in calling things what they are. It's just plain easier, I feel less silly than making up a hokey word that I feel like an idiot saying, and it saves much confusion later in life when anatomical parts suddenly have to be called by other, more scientific names. So when Liv started asking, I started telling.

Her initial questions started out at:

Q: "What's that?"
A: "A vagina."
C (for comment): I have a gina (her version of the word), too.

Soon, she started commenting:

C: Daddy doesn't have a gina.

and soon:

C: Daddy has a penis.

A few weeks ago, she started naming lists of who has vaginas. She obviously now gets the fundamental difference between boys and girls. Don't laugh. You may be on the list.

So yesterday, here is the conversation she had with Dad.

Livvy: Daddy, you don't have a bagina (notice the morph into a new word), you have a penis.

Daddy: You're right.

Livvy: Where did you get your penis?

Daddy, using the wonderful tactic of not answering a question by asking another question: Where did you get your vagina?

Livvy: Shoppin'.


I can only imagine the conversations we'll have when you're three, Liv. And I'll pretend NOT to be mildly concerned about what comes out of your mouth at daycare.

Deceptive

Today, I made a solemn vow. I felt the need to self-improve. For the sake of me. For Camille and Liv. For Bill.

I decided from this day forward, I want to try a lot harder to be deceptive. Deceitful. Cunning. Sly. Sneaky.

Now doesn't this sound like something every mom should aspire to?

Okay, so let me explain.

In my house, we have horrible diets. I never used to eat so poorly as I do now. It seems like I seldom cook anymore, and when I do, the meal nearly always comes from a box or a bag. I have this problem with planning ahead in that I rarely do it. Livvy is a splendid eater, so it is easy to be a non-planner and at least know that with little effort, she will eat fresh fruits and veggies that are readily available. Camille, on the other hand, is the queen of picky and thrives on carbs. She will eat only bananas and applesauce for fruits and veggies are off limits. If we try to persuade her to eat even a green bean, she makes herself gag. Seriously. Plus, we travel a lot---to Detroit, Iowa City. Which means lots of chicken McNuggets. Lots.

You hear about the childhood obesity epidemic, and I truly believe it is a problem. Not that my girls are too fat. In fact, being the parent of a micropreemie, we have always been more concerned with packing the pounds on than taking them off. Still, I was beginning to have visions of my children having cardiac bypass surgery by the time they hit 5th grade as a result of too many Happy Meals and too much Chicken Helper.

And I must admit...potty training got me to thinking. We were just enlightened to the idea that perhaps Camille is difficult to potty train as she has pooping woes.

So today, I took a tip and ran with it. Jessica Seinfeld, wife of Jerry Seinfeld, wrote a cookbook called "Deceptively Delicious." The premise is that we can sneak healthy things packed full of vitamins, minerals, fiber, etc into our children's food without them even having a clue. Brilliant!

I put it to the test. I pureed much of the late afternoon.....sweet potatoes, butternut squash, pineapple, carrots, broccoli. I pureed and pureed and pureed until my little food processor overheated. Literally. I even made homemade raisin bread. And tonight, for snack, I took Camille's favorite peanut butter, added some hummus and pureed sweet potatoes, put it on her raisin bread and wha-la. A healthy snack without a fight!

I think I could like this deception thing.

I'll let you know how it goes.