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.