Forgetting How

As we were leaving Ash Wednesday Services tonight. Liv felt the need to be carried. Coddled. Extra-specially loved.



L: "Mommy, carry me."



I obliged. I hadn't seen my girl since the wee hours of morning since I had worked a long day and met Bill at the church after he had picked up the girls. I needed a little extra mutual TLC.



Of course about half way across the parking lot, as I was dragging myself--my big pregnant self--across the parking lot with Liv in tow somehow saddled over my big baby bump, I thought maybe she'd be ready for a brisk walk.

M: " Okay, Liv, you ready to walk?"

L: "Well......I'm afraid I forgot how to walk."

Umm.

Ladies and Gentlemen, We Have a MacGyver in the House

What do these things have in common?

• 1 1/2 medication syringes


• A pair of Barbie Sunglasses


• A child-size Reach toothbrush


• A hair comb

Let's just say we have a resident MacGyver in the house. Her name is Liv. Yesterday, she came out of the bathroom, plopped them on the coffee table and announced, "Mom, here's my tools. I'm gonna use them to fix the window."

Super. Didn't know it was broken. But, after you pull that off, would you mind taking a look at the loose towel rack and the broken drain in the bathroom, too?

Disclaimer

Try as I may....OVER and OVER and OVER...I can't get the spacing to come out right in my following post. I am really not as much of a formatting idiot as this blog would make me seem....

Good Press

I've blogged before about Camille's Monday Night swimming lessons in the Adaptive Swim Lesson Program directed by Glenn Wragge, the adaptive PE teacher through Millard Public Schools. Today, the Saturday edition of the Omaha world herald featured a story on the program; we were so glad to see Glenn's program get some great coverage as it is something to behold. Without it, we would be shy of somewhere to take Camille for lessons as her visual impairment commands one-on-one instruction.

The picture at left was one of the pictures featured in the story. The story follows my post.

Camille started in the program probably about two years ago. It has been amazing to see her progress since those first days in the pool. Once she hits the water, she goes and goes and goes, sometimes in a swim vest solo, sometimes with her instructor's assistance. Her newest endeavor is holding her breath underwater and floating completely independently for short periods of time.

What's more, she gets extremely excited on swimming lesson Mondays and often asks every other day of the week when it will be Monday so she can go swimming with Tara, Jill, or whomever her instructor happens to be during the particular 8 week session that she is in at the time. She has developed such positive bonds from the program, both with the instructors and with Glenn and Mike, two of the program directors that are there year-round. Mike, a professor in the physical education program at UNO, has particulary become an object of Camille's fascination. His shaved head drew the attention of Camille early on, and she has been known to ask him, "Michael John, where did your hair go?" or "Mike, did you lose your hair?" to which Glenn replied, "Oh, yeah...she is way out of her shell."

You just don't get the whole package like this everywhere, and how we realize how fortunate we are to have such amazing people committing themselves to such an amazing program.

The story from the newspaper:

******************************************************

Water power

BY CAROL BICAK
WORLD-HERALD STAFF WRITER

It's Monday night, and the swimming area in the Lied Physical Fitness Center at the College of St. Mary is ringing with the sounds of splashing water, excited chatter and squeals of delight.

But it's not the school's swim team making noise. It's a special swimming class for people with physical and mental disabilities.

The program began about 15 years ago when Glen Wragge, an instructor with Millard Public Schools and the University of Nebraska at Omaha, and Barb Simpson, the health, wellness and aquatics director at the College of St. Mary, joined forces.

"It started with a parent's request, because he didn't have anywhere to take his kids swimming," Wragge said.

The classes have grown over the years. Now the eight-week sessions draw between 40 and 50 people every Monday night. The participants' ages vary from 1 to 50.

Each student gets his or her own teacher for two reasons, Wragge said: safety and training that is tailored to each swimmer's needs.

Although there are a few paid instructors, students from UNO, other area colleges and Millard high schools volunteer to help teach the classes. The college students are doing practicums for credit or working on service hours, Wragge said. The others just love swimming and working with people.

Wragge had praise for all his , instructors.

"Sometimes, people aren't comfortable working with people with special needs," he said. "For the most part, this (mix of instructors) works out really well."

Liz Opitz, a junior at Millard North, doesn't claim to be a world-class swimmer but volunteered because she had worked with disabled students at school.

"I enjoy it and helping others," she said.

The swimmers, no matter what age, seem to have a great time in the classes. From 6:45 to 7:15 p.m., the younger children take a turn in the pool. The older students and adults get a little longer in the water, from 7:15 to 8 p.m.

All Mary Holtmeyer has to do is tell her 5-year-old daughter, Emma, who has Down syndrome, that it's swimming night, and the little girl lights up.

"I like that the teaching is one-on-one, so she gets special attention," Holtmeyer said. The instructors "are just great. They do everything they can for the kids, and that's all a parent can ask for."

Karen Richardson enrolled sons Ryan, 12, and Tyler, 5, in the classes, mainly for Ryan's sake. It's the fourth session he has taken, Richardson said, and she has seen a difference in both his swimming skills and his self-esteem.

Before he began lessons, Ryan was shy about scars he has from surgeries and didn't like the water, his mom said.

"The lessons are really like private lessons, and the cost is reasonable," Richardson said. "They are great for kids who just don't fit in."

Logan Schneider, 12, has improved so much in the classes that he now competes in Special Olympics. His father, Mark Schneider, said Logan entered three swimming events last March and took home three ribbons.

Before taking the classes, Logan "knew how to swim, but he'd never been in a big pool like this," Mark Schneider said. "And he loves to compete."

Another Special Olympics competitor, Matt Frohm, 21, has Asperger syndrome and has been taking the class for four years.

His parents, Scott and Judy Frohm, recently watched him work with his instructor on the far side of the pool. They can list numerous ways the swimming program has helped Matt.

"He has learned confidence and interacting with other people," Judy Frohm said. "He has developed stamina and is in better physical condition." ,

• Contact the writer: 444-1067, carol.bicak@owh.com

Copyright 2009 Omaha World-Herald. All rights reserved.
---------- End of Story ----------

David Cook and Carrie Underwood Duet at Walt Disney World

Here you go, Jessy.

To say that life doesn't get any better than this would be...okay well overstated, shallow and ignoramus. Still, I must admit that it does strike a cord in my happy heart to hear and see my two favorite Idol winners of all time in a perfectly matched duet. It's a beautiful thing......

I hear you loud and clear

Sometimes it's just easier to go with it. Instead of fighting the tide, offering false encouragement, trying to practice the art of persuasion...it's easier to utter the six, simple, beautiful words, "I hear you loud and clear."

In other words, I get it. Right on sister. You hit the nail on the head. Amen.

For example....

Tonight, we had to go pick out a few options for the new house in progress (and yes, there is actually something resembling a house.....a basement, a frame, a roof! Unfortunately, I still don't think this hard physical evidence means that it will be done before June). At any rate, we had to meet the shingle/stair spindle/ interior and exterior door hardware lady at the large, upscale model....the large one that we are NOT purchasing. The most beautiful thing in this scenario....a basement to run in! A far cry from our makeshift winter bungalow. The girls ran and chased, though not to their hearts' content. As we were leaving, Liv refused to come out of the door. In the van, she sat, arms crossed and scowl applied in a a fashion that I believe would have made cousin Bridgette-in-her-younger-years proud. "I DON'T WANT TO GO BACK TO THE APARTMENT!"

I hear you loud and clear. Right on, sister. Check that.

Albeit cozy, it's getting a bit much so. Only four more months....

I Chase My Sorrows...

This is Liv Baez.

Cracked me up today as she dragged her pink girlie guitar into the kitchen, plopped down, and assumed perfect guitar form, even for a lefty. (By the way, Liv, David Cook is a lefty, too.)

Very astutely, she began to strum and broke into musical melodrama:

"I chase my sorrows...." strum, strum, strum.

I looked around, half expecting a bunch of guys in cowboy hats with shotguns and beer mugs to come out of the woodwork. Surely I was sleeping in some kind of country-western dream. Nope. No rusted out pick-up trucks. And for the life of me, I couldn't imagine where she had picked this up; though I do like a little country song now and again, it doesn't take precedence over "Boom Boom Makes it Great to be Crazy" and other Boppin Preschool Favorites on the CD player in the van.

As she started a second verse, I realized that this sorrow chasing somehow fit in with a song she must have learned during Bible time at K4J Preschool because the words led into something I can't completely recall about giving everything to Jesus. Kind of deep stuff for a mere three years, but very sweet and endearing nonetheless.

Still, this very grown-up interlude was a bit of a wake-up call. I have a feeling that the grown-up-ness will continue to come more quickly than I would like.

Case in point:

1) For the first time today, I heard Liv utter the phrase "IT"S NOT FAIR!" Not just once. Mutiple times. Yep..... she certainly left me standing still. I thought that was at least another year away. So, I did what every good mother does: I stalled. "This is sad, Liv" and then I locked myself in the bathroom to think about I was going to respond to this phrase, which I am sure she has tucked away in her brain for futre artillery.

2) As we were driving home from swimming lessons tonight, she found it quite entertaining to tap the cell phone charger against the window, and then the edge of the car seat. "Mom, do you like this one (clink clink clink) or this one (tap tap tap)?"

"Liv, I think I like the second one much better---the tap tap tap against the car seat. It is a much prettier sound than the tapping against the window." You follow my thoughts here....visions of shattered glass....

So, of course, the next thing I hear: clink, clink clink against the window. Before I even got turned halfway around to check the integrity of the glass, I heard, in her very stern voice, "Mom, don't you look at me like that."

So, though her three year check this last week with Dr. Cicero was filled with his awe at how fast her little neurons are firing, you can see that the cost is that some of her innocence is already prematurely gone.

Perhaps I should be the one strumming the guitar and chasing my sorrows.

Okay, check that. I think I'll keep my Liv just the way she is....otherwise I would miss out on quite a little zest and quite a lot of great storytelling.

Ode to Liv

Today, my baby girl turned three years old.

Where the time has gone, I have no idea. Yet....here she stands before me, full of life, full of love, full of spirit...no longer a little babe.

And how she makes my life more full.

Livvy touches my heart in so many ways. Too many ways to count: Her fierce independence and spunk that is so precisely balanced with her keen ability to show compassion and feeling at such a young age. Her bright little mind that has always been working three steps ahead of what I've expected. Her energy. Her incessant chatter about things real and imaginary. Her smile. Her inability to not smile when she's trying to hold a grudge. And the hair. You've gotta love the hair.

Some snippets to illustrate:

Setting the stage: Mom walks in to bathroom. Discovers Liv has consumed much foam soap. Bubbles runneth over.

M: Liv, whatcha doing?

L (matter of factly): Well, (her favorite intro phrase) I think I needed to wash my hands today.

Well okay then. Thorough is good.

I love that I NEVER know what I'm going to find when I walk around the corner...on the coffee table....who knew that Dixie cups could be so purposeful AND so ornamental at the same time?

The imagination. Pictured here is the Little People Dance 'n Twirl Palace that Camille got for Liv tonight. Needless to say, birthday wishes were fulfilled before the candles were even ignited. I could have listened to your chatter all night about Princess Cinderella, her magic spelling wand, the King, sitting down to breakfast, the princess not feeling good and having to lay down in bed and being helped upstairs by the King.....

I love that we went to Red Robin tonight and you were in your glory with an ice cream sundae, a shake, being sung to by the Red Robin himself, and getting to give him a high five to boot.

Never let your passion wane, little girl. It makes the world go-- as you would say--round and round and round and round (complete with hand motions).

Never let that smile fade. Never stop telling us what's on your mind. Never stop being so sensitive to others.

Love, love, love you with all my heart, Livvy Lu Lu.

I Remember

Yeoooow! It has been a month.

Yeooow!!

Okay, but I return, particularly inspired, and with child napping (albeit snotting and feverish).

Today, I remember.

As I was perusing through emails just now, the waft of times past returned, and I thought, "I remember that."

I am a subscriber to an email list-serv for an ROP (retinopathy of prematurity) support network. It is a group of parents/grandparents with children who have ROP and adults who have been living with ROP their entire lives. In the early days of Camille's diagnosis, that list was my salvation. I still look to it for guidance.

Going through the diagnosis days of the ROP journey was an extremely (if not one of the single most) difficult times in my life. ROP is quite unique in that it doesn't really rear it's head until a preamature baby should have been full term. For most kids with significant ROP, this is roughly 3-4 months after their births. A horribly cruel kick in the pants if you ask me. As parents, this means that most likely, you have survived the NICU, or at least nearly so. You have lived the day-to-day rollercoaster of life vs. death....yep, literally. You have wakened to the dreaded 3 a.m. calls and thrown on clothes to speed into the hospital, only realizing at 5 p.m. the next day when you are finally able to breathe that your hair still isn't combed or your teeth aren't brushed. You have been through the step program of high frequency ventilator to conventional ventilator to C-Pap to oxygen through nasal cannula to finally oxygen free. You have seen your baby receive more medications that you have in your lifetime...medications to keep blood pressure up, medications to control pain, medications to sedate, medications to close holes in the heart, fake food through IV's, antibiotics, antifungals, caffeine to stimulate breathing. You have gradually waited patiently for your baby to learn out to eat....one milliliter by one milliliter until they are taking full feedings through....you guessed it...a bottle sized more appropriately for a doll than a newborn. And FINALLY...you breathe a sigh of relief as you get to go home. Yes! Rest for the soul.

And then the cruel irony sets in less than a week later...."It looks like your baby is losing her sight rapidly and we're not sure we can do anything about it." You've got to be kidding. (Insert words of choice here).

And as the road trips begin and the eye surgeries commence and you live day to day just waiting for news that to you at that time will make or break your future and your child's future, you look around. And there is no one like you in the world for all you know. Blindness in babies in a very low incidence disability.

That's where the ROP group came in. I don't know when I stumbled upon the ROP list serv, but it was my first contact with the visually impaired world and the first time someone said, "I know how you feel and I know what you're going through" and it was actually true and I actually knew it. It was the first time I really felt validated and not crazy. Thank goodness...there were others out there who felt alone, crushed, fearful. There were veterans who said, "I remember those times," and they had somehow survived and even had words of wisdom that I could hold onto.

As I was reading some new posts on the list today, I had the sudden realization that I was reading about "former me's." I was now reading about people with babies who were just starting the surgery circus with more unknowns than knowns, more fears than hopes. And my heart goes out to them, and I can now say, "I know how you feel and I know what you're going through. And it doesn't seem like it now, but there is so much hope to be had. Regardless of what the surgeons can or can't do."

I can say this not because of any inner strength of my own or anything I have done or accomplished. I can say it only because I have this amazing 4 1/2 year-old who teaches me.

I look at her as she stands today, and I see what she has become capable of, despite mountains of challenges and setbacks. Despite pain she has endured which we cannot comprehend. And I have to believe, because I see what I see today, that she will continue to amaze us with her ability to learn, to charm, and to love.

This week has been all about valentine-making. She LOVES to braille. She would get on her Mountbatten and braille, braille, braille all day long. And spelling....how this girl loves to spell. Her beloved teacher of the visually impaired, Ms. Carrie, took the reigns in the fall and saw that Camille really needed to start intensive Braille instruction outside of preschool time, and Camille has responded to her guidance with more zest than I would have expected). This great relationship coupled with technology that Camille loves (a shout out to Ms. Carrie for working around obstacles and a crazy, pregnant mom to get it in the classroom so early) and Camille's love of the written word, has resulted in a love affair of sorts.

Today, since she was the snotting and feverish one at home, she got on her Mountbatten Brailler and, in braille, she signed her valentine cards to all 40+ people in her two preschool classrooms by herself. She was so proud, and so was I. And when we were done, she made a valentine card for Dr. Cicero and her "grown-up" friend Ellie, one of the nurse's daughter's, before we headed off to the doctor's office.

And so as I was reading the messages from the new moms and grandmothers on the list serv today, I had an epiphany that in some ways, we have come out the other side. Sure, challenges remain. Certain heartache will ensue. But that Camille...she allows me now to be the one to pass along words of wisdom (when I'm not still searching for them myself) and say, "There is hope...and here is living proof."