After being inspired by this post by MckMama (one of my favorite bloggers), I have decided that I must document Lucie's unique approach to showing her emotions.  In other words, our 20-month-old does indeed throw tantrums, something new to us, since Ava is just about the most laid-back kid in the world. 

I must issue a disclaimer before I begin - Lucie is the most loving child.  When she is well-rested and content, she hugs, kisses, snuggles, pats and loves us up.  She loves up her stuffed animals, baby dolls and even Zoe the cat.  Occasionally, she will show love to her sister - we're still working on the "don't grab everything out of your sister's hand" concept.  She waves to everyone at the grocery store.  She lovingly puts her head down on pillows to show us how soft and sweet they are.  She really is a joyful baby, but when it gets ugly, well....

Lucie currently has few words that she uses consistently.  #1 is "Yeah!"  This word takes on many tones - excited, agreeable, relieved, so-glad-you-made-that-suggestion, Mom.  Other than that, Lucie says  the following words, but doesn't always know how to get what she wants by using them(it's an obscure list):  down, night-night (she uses these appropriately), ellie (elephant), egg, dog, woof!, duck, Da-Da, Dida, Nonna, Zia, Mia, Ava (comes out Aya).  She has yet to call me anything but Na-Na. 

The one thing that Lucie does have down is the whine.  It's a short, choppy "uh, uh, uh" that lets us know, "I want something!" or "Name this object!" or "Please turn on the Wonder Pets!" (this is always accompanied by her bringing us the remote control).  Then, there is the rapid hand wave.  Note to self to get videos of these both.  The rapid hand wave sometimes accompanies the "Uh, uh, uh!" and means, "NO!  You're not reading my mind!!!!!  I'm so frustrated with you!!"  I like to think that Lucie has very complex thoughts and plans, but just has not aquired the vocabulary to convey these thoughts/plans.  When you put complex thoughts/plans together with a limited ability to communicate, well...you get a tantrum. 

Like MckMama, I have had my own Target "incidents" with Lucie.  Ava is a joy to take shopping; Lucie lasts in the shopping cart for about 5 minutes flat.  The worst was the time that we all went to Eat N Park on a Friday night and then to the Dream Night at the zoo.  (why didn't I take the first outing as a sign that the second would be worse?)  Lucie acted like an animal the entire time, except, of course, when there was a stranger to wave and smile at.  She would not sit in the high chair, she wanted to walk around amidst the waitresses running heavy trays of hot food, she wanted to take Ava's cane for a spin (again, among the waitresses), any food that we offered her was poison, toys were ridiculous attempts at distraction.  And, we didn't have a paci.  I ended up leaving the restraunt and driving her around, finally pulling into a drug store to purchase a paci.  The drama continued at the zoo - refusal to sit in the double stroller, screaming, choking, snorting, drooling, sweating when we forced her to sit in the stroller, running away from us into a crowd of hundreds of people when let out of the stroller.  Poor Ava has to listen to all of this. I wanted to leave her in a cage at the zoo, but we ended up bringing her home with us, tear-stained face and all.

We have challenges ahead of us with Lucie.  I literally have no experience disciplining a toddler.  Ava did not need discipline when she was Lucie's age and I'm afraid that my tactics are too simple.  Mostly, when Lucie gets revved up, I end up looking at her curiously and talking to her quietly.  I'm afraid that if I get loud or angry, it will only make things worse.  I have done time out - one minute on the bottom step - and I think that she gets this, because for a few seconds, her crying escalates and then she does eventually calm down, just in time for us to hug after her time is up. 

Despite all of this toddler-esque behavior and drama, Lucie is, as I said, the most loving little girl.  At the end of the day, I often find myself sitting here, thinking of her all snuggled up in her crib, smelling like lavendar and holding her pacis close and I think of how lovely and passionate she is about her little life, and I smile at the thought of beginning another day with her.

Since becoming the mother of two little girls, a lot has changed around here. First on my list is the noticeable lack of time that I have to accomplish anything completely.  Ava is in preschool during the day, which leaves Bobby, Lucie and me to work through the day together.  With both of us working from home, you might think that it would be easy to manage one 17-month-old.  Not so.  We are both extremely busy and often find ourselves struggling to figure out who will deal with meals, diaper changes and playtime.  Because we often have meetings to attend or students to work with at the same time, our little Lucie has been allowed to develop a very bad habit: TV.

 
When I was at home with Ava, several things were different.  First, she was not mobile at a "normal" age, so she would pretty much sit and play with a bunch of toys and I could do just about anything.  Ava would entertain herself through a whole Wee Sing CD, which any time-starved mom knows is at least 60 minutes long.  There was no TV with Ava, for obvious reasons.  Second, Ava had therapists who came to the house nearly every day, so I basically had to keep the house clean on a daily basis and this kept us very much on schedule.  It also helped me to build in specific times when I would focus only on Ava and not on work.  And third, my job was just simply a lot less, in every way, than it is now.
I hate the TV thing with Lucie.  It started as just a cute episode of Wonder Pets or Backyardigans while she had her morning sippy cup of milk, but slowly, she began to demand more.  And, at times, we were willing to let her watch just one more episode because Mommy and Daddy are trying to have CAREERS here, for God's sake!  Add Lucie's "I seriously know what I want and if you don't give it to me, I will cry until I pass out," personality to this and you've got a TV-addicted toddler and two stressed-out and guilty parents.  Things have gotten so nuts with the TV that Lucie will actually hunt for the remote control, find it, and bring it to me wherever I am.  I cannot believe that my tiny 17-month-old does this.  I must look at her with this stunned glare every time she toddles in with the remote, because she immediately looks at me like, "What?  You know the drill." 
Mother's Day is Sunday and because of this, I have set some Mommy goals for myself.  #1: I will structure my days more successfully so that I can spend more time getting Lucie out of the house; #2 I will break Lucie's TV habit, even if I have to take every TV out of the house.  Hoping that #1 will help to accomplish #2, because I really, really love Medium and The Office. 

Lucie is definitely different than Ava - she is a reactor, hands down.  I actually feel bad that Ava has to listen to Lucie's total meltdowns, which happen at least 10 times a day.  Thank goodness Ava has school, or she would be done with her sister by now.  I'm hoping that once Lucie learns to talk more, she won't be as dramatic.  Probably not, but I can hope. 
My favorite times are when the girls are together - Saturday mornings are the best.  They are both rested, refreshed and so darn cute playing together in their PJ's.  I love sitting on the couch, sipping my coffee, just watching my girls navigate their toys.  I've been encouraging Ava to reach out to Lucie a little more lately.  Yesterday, Lucie kept coming up behind Ava and touching her hair and I told Ava to reach out and tickle her.  Lucie caught on and was laughing and dancing around her sister.  Ava was thrilled with this and kept saying, "Lucie is really happy!!"   

Ava is making great strides in preschool with mobility, language and Braille.  And...the biggest accomplishment in recent weeks...Ava is now 100% potty trained - horray!  Boy, does she love to say the word "underpants" - it's too cute.  Miss Jenn suggested a few weeks ago that we go for it and forget the pull-ups, since Ava was mostly staying dry at school anyway.  I try to stick to a schedule with her at home in the evenings, but she is really good at this potty thing.  If I forget to send her to the bathroom for a few hours, she will still stay dry.  It's like one day, it just clicked with her. 
Lucie is walking, running, and dancing around our house, constantly opening drawers and cabinets to disover what's inside.  She's not talking much yet; everything is "a da," but I'm not worried.  She is a thinker, taking everything in and processing it.  She signs "more" and "all done" and basically just points for whatever else she wants.  She has awesome fine motor skills and can figure out any gadget in the world, including her sister's mp3 player.  She can sort blocks by color and shape and loves to stack things and then crash them down.  Her favorite books right now are the Pat the Bunny series - she just loves to lift the flaps and feel the textures (with her thumbs, of course).  She still loves her paci at night and, according to Aunt Katie, is the only toddler in the world who actually gets giddy when it's time for bed.  She smiles, giggles and snuggles down into her crib and that's the last we hear from her for the night.

Things that I'm so, so thankful for on this Mother's Day, in no particular order:
1.  My two beautiful, healthy, smart daughters
2. The ability to work from home, even though it can be stressful
3. My wonderful husband and his amazing parenting skills
4. Coffee
5. Living in a city where there are lots of choices, both for us and the girls
6. Ava's school, the Western PA School for Blind Children and her teacher, Miss Jen and all of her terriffic therapists/aides/friends
7. The very powerful feeling of motherhood
8. As Bobby would say, familia - it's ups and downs and everything in between
9. All of the other wonderful moms that I know, wherever you are, especially moms who are on a special journey, like me.
10. Quiet moments with my husband and girls, when all is right in our little world.


   

The sky outside says that we're about to get a lot of snow - it's pure white with thick, heavy clouds and the air is strangely still.  As I write this, I can see Lucie through the video monitor, snuggled up in the corner of her crib, peacefully gathering energy for the day ahead.  This week has been interesting, as Bobby and I started work again after the holiday break and Ava transitioned back into preschool after a 3-week break.  Two weeks were for her Christmas break, the week before she, Lucie and I were sick with an awful sinus, respiratory thing - what a week that was.  The remnants of our illness left Lucie with an ear infection, Ava with an extra-long break from school, and Bobby and I weary from taking care of two sick girls while trying to work.  That was the first time that both of the girls have been sick together and it was yet another reminder to us of how different having two kids is than having just one.  Everything more than doubles.  When Ava finally started feeling better, Lucie lagging behind for several days, I felt this overwhelming thankfulness for Ava's overall health.  What if she were sick all of the time?  How would it feel to constantly have to worry and wonder about her health, when the next bout was coming...I don't know and I'm glad that I don't know.  I watched her return to her old self, playing with toys and singing, and it was so joyful to realize that our time with sickness is so incredibly limited. 

  With the exception of Lucie's ear, we were all pretty much on the mend for Christmas.  This was definitely our best Christmas ever since Ava was born.  She and Lucie are such wonderful playmates and they love all of the same toys - Lucie has an ear and a rhythm for music like her big sister!  Christmas morning was so much fun with both of them, watching them explore their new playthings, listening to Ava's reactions and descriptions, seeing Lucie crawl over to Ava to share something new.  They have a very unique way of communicating.  Lucie is a rather quiet baby; she is more observant than verbal, and yet she and Ava have this way of talking with their hands, passing toys back and forth, sharing experiences.  Ava is the narrator (just like we were for her!), listening to Lucie's actions and reporting what is happening, "Lucie has a bell, Ava has one, too!"  It's a miracle to watch them.  They are this way in the bath tub, in the playroom, in the car.  They are the cutest pair of sisters that I have ever seen! 

Yesterday, we met with Ava's team for her annual IEP review and discussed her many new goals for the upcoming year.  I can never express my gratitude for the team of professionals that Ava has - every single one of them is totally on-target with what comes next for Ava, from building her muscle tone to working her fine-motor skills so that she is ready to read Braille.  As Bobby and I talked with Ava's teacher, Jen, and the director of the preschool, Lucie played quietly for nearly two hours with just a few toys, some juice and a snack.  What a one-year-old she is!  Such a wonderful little girl, so interested in the small details of everything around her.  Lucie can occupy herself for a long time with a puzzle or sorting blocks - all with this determined look about her brow and her paci in her mouth.  She also has a great sense of humor, sticking out her tongue a few times during the meeting, getting laughs from everyone there.  It turns out that Ava's personality is emerging more at school, according to Jen.  They are starting to see the Ava that we see at home - Jen reported that Ava has been telling little "funny things" at school to get a reaction out of the adults, like that Lucie got "40 pacis and ba-bas" for her birthday!  I love this side of Ava - her sense of humor, her ability to tease and use sarcasm.  She is just so fun to be with at this age!

After the meeting yesterday, we all went to Ava's classroom to pick her up and there she was, sitting in a little chair, bouncing to music while her friend, Seth, played next to her at the table.  The second she heard us, she said, "It's Mom-myyyy...." and Lucie let out a howl of excitement when she saw Ava!  Once we were in the car, we picked up some lunch and as we made our way home, I said to Bobby, "You know, it's good to be a family, isn't it?"  Ava's meeting - with all of the good conversation, praise, things to look forward to, and Lucie playing so contently, suddenly made me feel such a contentment with the four of us and how we function together.  It made me feel glad that Ava and Lucie are who they are and for their uniqueness and similarities to one another.  I felt pride in how we have raised Ava so far - she has a lot to learn and we have a long way to go, but she is on the right track.  I often feel that we can't take much credit for Lucie, that she just learns things naturally and is who she is because of her innate personality, but I have to remind myself sometimes that we - Bobby, Ava and I - have a big influence on who Lucie is becoming.  She looks to her big sister to figure out the way that things are done.  She learns to respond to us by the tone of voice that we use and the looks on our faces.  She needs our guidance every bit as much as Ava - her life will not be perfect just because she can see. 

So today, as we get 6, 8 or 12 inches of snow (yikes!), we will enjoy our day "stuck" in the house, cooking, playing, napping, laughing, discovering new things with the girls.  We will enjoy our day as a family, the strongest thing on earth. 

Ava and Lucie, my little loves.  So different and yet so similar.  As Lucie's personality emerges, I find myself thinking back to when Ava was her age and the differences between them.  A few examples:

• Ava LOVED her bath as a baby; she would splash and kick and scream and never wanted to get out.  Lucie...she could take it or leave it.  She loves the water, but is cautious. 
• Ava is the most patient child ever and always has been.  On her changing table, I could just hand her a toy to manipulate and she would let me lotion and dress her, no matter how long it took.  Lucie on the changing table: you better do it and do it fast, or she will let you know.  Currently, the only thing that will entertain her while dressing is her toothbrush.  All other little toys - forget it!  She pushes or throws them away. 
• Lucie cries and yells instantly if I leave the room, if she can't reach a toy (learn to crawl, Luce!), if Ava has a toy that she wants, if she's in the high chair for one second too long....the list goes on.  She is such an overreactor!  (Gee, who is like that?  I'm examining my own faults these days...)

I would like to think that perhaps Ava was just born with her laid-back personality, but a part of me can't help but visit my "what if" world when I think about this.  I have always had this alternative vision of Ava, her "second life," if you will - I wonder what Ava would have been like if she could see.  Would she still be as patient if she had the ease of mobility, the luxury of choice and visual desire for things and places?  Or, is this just her?  I guess that I will never know, but I wonder about it sometimes. 

Despite their differences, Ava and Lucie get along very well together.  Ava has grown to understand Lucie's wildness and sudden outbursts - this doesn't bother Ava anymore.  Ava loves to grab Lucie's feet and hands and shake away, saying, "Hiiii, Luce!" - she is the sweetest big sister.  Lucie wants Ava - not just her toys, but she wants HER - Ava is really in trouble when Lucie finally gets this crawling (or walking) thing down.  Lucie wants to throw herself on top of Ava, I just know it! 

Now that Bobby and I are both working from home, Lucie gets lots of attention.  This is nice because our focus has so often been Ava, but since Lucie is the only one at home during the day, she has us all to herself.  I have been taking Lucie to her Kindermusic class on Thursdays and she is really getting into it - clapping, waving, reaching out to the other little ones.  She loves to dance to the music and play with the instruments.  She and Ava both have a love of music and it's fun to get out all of our instruments at home and have a dance party. 

As for Bobby and I - we are slowly figuring out how to make this at home thing work.  It's a bit more stressful than I thought because we haven't totally figured out a good schedule yet.  Sometimes, we both have things to do at the same time and Lucie is shuffled back and forth between us - it's a battle for private work time!  We're getting there, though and this weekend, we've been reorganizing our work space, cleaning out our desk and totally reorganizing the girls' toys, which were totally out of control.  With Christmas and birthdays coming up, we're sure to have an influx of new things to play with!

Ava is doing so well with her cane at home, school and out in public.  She has to work on her form a bit, but I am thrilled with the way that it has helped her to navigate strange places.  I used to dread the idea of Ava having a cane (when she was a baby) because to me, that was the time when I could no longer fool the world: hello, world - my daughter is blind.  I thought that I would feel so much fear and shame and lived inside of my secret for a long time before Ava could walk.  It was easy to pretent that she was just a shy baby in the shopping cart or stroller, more focused on her toys than people who approached her.  Now that the time is here, I am so proud of Ava's cane.  Taking it out in public the first few times made me a little nervous, but it was a nervousness that came sort of half-way through our outing - like this moment when I stopped and realized what might happen if someone looked at Ava funny or said something about her.  I just kept my eyes on the prize and focused on our carefree, confident little girl, finding her way through a strange world.  She kept me from allowing my fears to overtake me. 

Now we're full swing into Fall, looking forward to some exciting things coming up soon: a trip to a farm/pumpkin patch with Ava's preschool (we're all going with her!), Halloween parties, our neighborhood's Fall Fest, trick or treating for the first time with both Ava and Lucie.  Can't wait for all of these good things!

The four of us are about to embark on a new journey, one made up of two laptops, two phone lines, over 400 students, a few work-related "get-aways," sharing household responsibilities, double-teaming a soon-to-be-crawling Lucie, anytime trips to the grocery store, two parents meeting Ava when she gets off the bus, grading essays and math tests and...leisurely drinking coffee together in the mornings?  Nope, I'll have to do that last part alone - my husband is one of "those people" who doesn't like coffee. Boo.

Bobby and I have chosen to both work for the Agora Cyber Charter School (www.agora.org) - I have been with Agora since October, 2006 and Bobby was just offered a position less than two weeks ago.  Of course, he accepted a job at Frick middle school (and signed a contract, holding him to the 4 longest weeks of his life...) just as Agora was about to make him an offer.  At first, we both said, "No thanks," but then, a strange thing happened.  He came to me the next morning at 6:30 and said, "I don't like this, I don't want to do this."  Having had no coffee, I thought he was joking.  "Ha, ha, see ya later, honey - have a good day!"  He was serious standing before me, asking me to consider the possibility of another kind of life for our family. 

And so here we are - Bobby got his computer delivered today and he is about to begin an online training course.  As we sit with our dueling laptops on the couch even as I write this, I am excited about the possibilities that this career move holds for the four of us.  Yes, we might want to kill each other after one week.  But, like any good negotiation, we will have to give and take a little.  Maybe I will actually get one or two days a week to...work?  For a solid 8 hours?  Uninterrupted by a child?  Sounds good to me. 

I actually felt afraid when Bobby said that he wanted to leave Frick.  Wait, isn't he supposed to be the "man out of the house" while I'm here, holding down the kids, laundry, dishes and a full-time career as an English teacher?  It occured to me that I had a lot on my plate and that maybe I could use some help.  We always dreamed of the ultimate lifestyle as teachers - doing something we love and getting home by 3:30 every day.  Summers off with our kids.  Holidays off.  But getting all of that and not having to leave the house?  You're kidding.  I felt that we were given a wonderful gift when I was offered a job with Agora, but now the two of us?  It sounded too good to be true. 

I cannot lie - I LOVE working from home.  No getting dressed up every day, no commute, noone telling me to do what at what time.  Having breakfast with both of my beautiful daughters every single day, playing with Lucie in between calls to students, running errands when I please, connecting with kids who really want to be in school, learning about their lives through their writing, teaching an online class in my jeans and slippers.  It is awesome, it is a privledge.  And yes, it's also stressful sometimes.  My students need me and my children need me - sometimes at the same time!  But with the two of us working together, raising children together, managing the house together, supporting each other, leaning on each other, understanding our similar paths, I think that we are creating a new kind of family.  One that refuses the stress of leaving our children at a day care, a long and wasteful commute, feeling sad that we have only limited time in the evenings with our kids.  I do not want any of those things - I can't imagine that anyone does.  Not all couples have the choices that we do and so, as we venture into this new territory together, we can only feel so thankful that we have, once again, been given everything that we have asked for.

If you've been checking out our Summer photo gallery, you know that we're a busy family these days.  Ava finished her regular preschool year on June 6, we took our annual Cape May trip at the end of June, have spent weekends with my family, attended a bridal shower in Columbus and between all of the packing, unpacking, cleaning, feeding, playing, bathing, organizing, I've barely had time to think.  July was supposed to be my vacation month - I think I've gone to bed more tired this month than the rest of the year!   Bobby has accomplished two big projects so far this summer: building the girls' swingset and reorganizing the garage and utility room (which involved building shelves).  We still have a lot to do, but thanks to global warming, our summer will last well into September, maybe even October! (hey, last year, it was nearly 90 at Oglebayfest during the first weekend in October...).

Ava also just wrapped up her summer preschool program (July 14-25) and she had a great time.  She was assigned to the same classroom, but her teacher was "Miss Patrice" who was a regular sub during the school year.  Ava apparently liked her already, as she rattled off something about, "Miss Patrice feeds lunch to you with noodles and chicken and broccoli and milk...".  Tina (one of Ava's aides at school) said that Ava jumped "right in" on day 1 and it seemed that the 6 week break from the school routine didn't phase her.  She continues to shine in Circle Time, raising her hand to answer every question about every word, sound and letter imaginable.  One skill that Ava has developed (which I am particularly impressed with, of course...) is being able to identify what letter a word begins with.  She can do this with any word, I swear.  And, for future bragging to all of Ava's friends about what a genius she was at age 3, I present the following:
Sound Isolation - Awareness of Beginning, Middle and Ending Sounds (age 6)
Identifies beginning, middle, and ending sounds in words. For example, "What is the beginning sound in neck?" "What is the ending sound in jog? "What sound do you hear in the middle of kitten?"

Yes, that's right - Ava has mastered beginning sound isolation.  And it's not because her hearing is "5 times as good as ours" - that's actually a myth.  It's basically because she is smart, she cares about words and sounds way more than the average 3 year old and she does, in fact, use her sense of hearing more efficiently than the average toddler.  Oh yeah, and she has two teachers as parents. 

Other recent Ava accomplishments include teaching herself "The Itsy, Bitsy Spider" on the piano (she has also made up several songs to this tune) and she has had major breakthroughs in self-feeding.  I've been working on a simple reward system that involves Ava taking a series "scoops and stabs" of food and then getting to play with a special basket of musical toys (hello, Dollar General!) that is reserved only for mealtime.  Erin, her feeding therapist, is doing the same thing and boy does it work!  Ava has also started picking up, popping in and chewing pieces of banana.  This is huge, as she can now sit in her booster and feed herself an entire snack of banana, grahm crackers and milk - while I clean the kitchen or feed Lucie.  It's wonderful to see her gaining more independence. 

Meanwhile, Lucie is nearly 8 months old and growing entirely too fast for me.  Her little life has gone by so quickly; one day, she has no teeth, the next day, she has 2 popping through.  Suddenly, she's sitting up, eating cereal, knawing on biter biscuits, holding her bottle, scooting over in bed to snuggle me, babbling, and going nuts in the Jumparoo.  Lucie's life is like Ava's in fast-forward, which I kind of expected.  It's ok, I like it this way.  Lucie's progress has helped to heal my heart.  I watch her shifting toys from one chubby hand to the next, watch her reach for Ava, see her snuggle Daddy or chew on her paci and I am so happy that she's here.  She has brightened our lives.  She has turned Ava into a big sister.  If you haven't watched the new video, "Ava and Lucie playing," please do.  I am always amazed at how Ava tunes into Lucie via sound and how much Lucie wants to imitate Ava's actions.  It's awesome that Ava even cares about Lucie, as I know many other sighted older siblings who could care less about what their baby brother or sister is doing.  We strive to teach Ava to take pride in being a "sissie" and having one. 

Lucie is basically in the lunging forward stage - she wants to move toward her toys, but hasn't quite developed those leg and abdominal muscles to crawl yet.  She still has the greatest smile ever and is an affectionate and happy baby.  I still love her sleeping next to me.  Even though she is still a baby, I already miss the precious times gone by.  Is this why women keep having babies? 

This past weekend, we travelled to OH to spend the weekend with our friends, Jill, Erik and Ella Ibsen.  In case anyone doesn't know already, Ella was also born with anophthalmia and is blind.  She and Ava are sisters in spirit, I swear.  Ella is almost exactly half of Ava's age and boy does she remind us of Ava when she was "almost 2." 

This was our second time spending the weekend with the Ibsens.  This time, we had another good reason to travel to their home: Patrick Henry Hughes was performing at a local church.  If you don't know about Patrick, read about him here: http://patrickhenryhughes.com/

On Saturday, we arrived at the Ibsen home around 11:00am and were due at Patrick's hotel to meet with the Hughes family, Patrick John, Patricia, Patrick Henry and little brother, Cameron.  Meeting the Hughes' is something that's been on my wish list for a while - Patrick was the first person with anophthalmia that I read an article about in a national publication - Newsweek, I think it was.  Ava was very little and I was still pretty raw with emotion.  It helped to read about Patrick's accomplishments. 

It was pretty cool to meet Patrick and his family, especially to speak with his parents about so many different things, including the inside details of the Extreme Home Makeover process!  We also found out that Patrick loves to listen to ordinary sounds - he even has a fine collection of everyday sounds on CD.  Ava loves to listen to telephones - all kinds of rings - high, low, long, short.  We agreed that Ava might like it if we picked up a couple of sound CDs.  Ava got to show Patrick her small digital recorder - her pride and joy of sound.  Patrick even recorded her a special message.  Ava got to chat with Patricia and Lucie got some squeezes from her.  It was just a laid-back visit with what seemed like old friends. 

That night at the church (a HUGE auditorium, what I would call a "mega-church), after Patrick Henry graced us all with his piano playing and singing, his family came out on stage to answer some questions from the audience.  One thing that Patrick John said struck a chord in me.  He really disqualified the notion of he and Patricia as "heros" - though they have altered a great deal of their lives for their son's accomplishments and dreams (Patrick John attends classes with Patrick Henry at the University of Louisville and pushes his wheelchair during band practice and performances and the last we heard, he was working the night shift for UPS), Patrick John said what I love to say to people, "I'm no hero, I'm just an ordinary parent doing what my child needs me to do." 

I can't stand the idea that people think of me or Bobby as extrordinary.  If your child were born blind, you would become me.  You would go through all of the doctor's appointments and genetics appointments and all of the therapies.  You would learn Braille and how to trail walls and how to make ordinary books into cool tactile books.  You just would, because that would be your baby and you would love her as much as we love Ava.  And if you wouldn't, then you would be a crappy parent.  Lord knows there are some crappy parents out there!

When other parents say to me, "You and Bobby are this and that, I could never do what you do, I don't know what I'd do if I had a child like Ava, it takes a special kind of person to do what you're doing, Ava was given to you because you are such a special mother....etc, etc, etc," I want to scream.  Sometimes, I want to say to a mom with an child who's throwing a tantrum in a store, "Wow, your kid is such a brat.  I don't know what I'd do if I had a child like that.  You must be a really special mother."  How would that feel?!?!  I'll tell you - exactly the way that it feels when people compliment us on doing what comes natural to us - mothering and fathering our daughter.  Nothing special, nothing that requires anything more than two parents who are devoted to raising independent, happy, healthy children.  So, for anyone who has ever given these "sentiments" to the parents of a child with special needs, take it from me: it's not really that complimentary.  It makes them feel like you are separating yourselves from them and that's not what "we" want.  We want to be lumped into a group with you: a group of ordinary, loving parents who love playing with their kids and who would do just about anything for them.

It's cool to be Ava's mom.  She is a VERY cool toddler - she has great taste in music, she gets sarcasm and jokes, she loves awesome and fun toys (go, sheepers!), she loves to be outside, she loves to listen to stories on CD like "Skippyjohn Jones in the Doghouse" and LOVES when I download episodes of the WonderPets for her to listen to.  She is a big sister, a preschool girl, a walker and a talker, a singer, a piano player, she loves books with pictures that feel neat, she loves to swing, she loves to talk on the phone, she plays with toy cars and schoolbuses and crashes them into each other, she loves suckers and cookies, Eat N Park is her favorite restraunt and she will be your best friend if you give her something that feels rubbery.  It is so fun to shop for Ava's toys and clothes.  She won't take just anything.  Her toys have to sound neat, feel special and her clothes have to have something bumpy, scratchy, sparkly or soft for her to feel.  Sometimes, I buy toys and adapt them so that she will really like them, like the $1 farm animals that I got at Target last week: straight from the store, they are just molded plastic pieces that say "baa" and "moo" - but, with my adaptations, they are a sheep with real wool and a horse with a leather saddle and soft hair on his mane.  How fun is that?!  It is not a disappointment or a challenge to be Ava's mom, it is an ordinary, everyday honor. 

If you want to hear another mom's perspective on this topic, check out Jennifer Graf Groneberg's column.  She is a mom of a son, Avery, who has Down's Syndrome and she is really very honest in her perspective: she isn't bothered by the fact that Avery has Down's Syndrome - in fact, she kind of likes it: http://www.mamazine.com/Pages/column135_aid17.html

Our visit with Ella and family was overall wonderful, and we just think that Jill and Erik are so much like us!  There's Bobby, checking out their DVDs and saying to me, "They have so many of the same movies as us!" like we're just these parallel families, destined to meet in this life.  Hey, we are!  Jill and Erik, ever think about moving to Pittsburgh?    Check out pictures from our visit in the Photo Gallery.

In other news, today Ava went to Kennywood with her preschool class and Lucie and I tagged along for the ride.  Ava is a rider!  She went on the Turtle, the Kangaroo and the Merry Go Round with not one complaint!  She rode with Miss Jennifer and loved every minute of it.  There she was, on her horse with her head back to feel the wind blowing in her hair.  I caught a good glimpse of her laughing as the Kangaroo shot she and Jenn into the air.  My girl is growing up - she likes amusement park rides.  She is not afraid.  I already called Mia and told her that she has a riding partner for Kennywood this summer!  After Jennifer and all of the other kids and adults left (I was taking Ava straight home from the park), Ava, Lucie and I hung around for one more ride on the Merry Go Round, all three of us together in one seat.  It was awesome to be there with my girls, a day that I will never forget.