Be Mine

Tomorrow is Valentine's Day. Historically, I haven't loved it. As a kid, I ALWAYS missed it. I ALWAYS had a fever on the party day and stayed home from school. As a young adult, I sometimes felt left out because I didn't have a boyfriend.

As a parent, I LOVE it! I love it for my kids, for the opportunity to help make special Valentines for my kids to give to their friends. This is what I came up with for the Pope this year... And I love how they turned out.

The princess wanted store bought Valentines this year. Guess she's too cool for homemade Valentines. Guess that was boud to happen, sooner or later.

The Pope's Valentines are the last time we'll make Valentines for Pre-school... And that makes me a little sad. Once he gets older, he'll probably want store bought Valentines too, or he simply won't care. I'm just trying to enjoy it while it lasts.

Father/Daughter Dance

Help! When did THIS girl, in a pretty dress...

Become THIS girl, in a pretty dress??!!

Seriously... how does this happen, in just SEVEN, (yes, 7!) years??

That beautiful baby, who had was 'just' able to sit-up unattended, was barely 13 months old. 14 pounds, tiny, frail and oh so happy!

The little girl (who looks 17) is just 8 years old. No longer so tiny, certainly not frail, full of energy and life! A girl who knows what she wants and how to get it! A bright, funny, charismatic girl who loves dance, art and God. And us too... She lets us know!

We could not have imagined this child. She's amazing, beautiful, talented, so smart! She's going to take the world by storm, one day... but right now, she's got her father and I wrapped around her little finger.

Ah, and that beautiful, perfect dress? She picked it out for her dance... The father/daughter dance, later this month, at her school... Always the belle of the ball...

Brailler Update

Progress! After a meeting with the Pope's TVI and the supervisor of the Southern Regional office of the CBVI, we have been put on the list to receive a Perkins Smart Brailler! I am perhaps the most excited about this development. As parents, we work so hard to get the tools our children need to be successful.

Currently, Perkins is sold out of the Smart Brailler, so we're going to have to wait until they are back in stock. Then we'll have to wait until the CBVI purchases some more units. Then we'll have to wait again until our name comes up on the list. Then training... but I'm hoping to have it for the Pope by the time he starts Kindergarten this fall. It seems like a lot of waiting, but it'll be worth it. At least we're on the list now... from "no" to "yes"... We'll take what we can get!

Growing like a weed

Dear Pope, This weekend I really noticed how much you've grown. The photos below were taken in March 2011, March 2012 and this past weekend. You've gone from a "baby" to a little boy.

Keep Calm and Braille On.

I want this for my son. I want Pope to have this piece of equipment. It's called the Perkins Smart Brailler and it's an ingenious device for teaching Braille. The commission for the blind should provide this... The problem is, they may not... And why? Because the Pope may not be blind enough for Braille. Fortunately, for him, the Pope has a little usable vision in his one eye. His other eye is a prosthetic since he lost that eye to Retinoblastoma, it can see nothing. His remaining eye, while small and fragile, has the ability to see light, color and some objects up close. This is HUGE for Pope, but I worry about his future. He can not see average book print. And I worry that Braille will become more and more important to him as he gets older and is reading. Thus far, the commission for the blind has determined that JP is a "visual learner" and they are not yet willing to provide Braille. The Smart Brailler cost ~$2000... certainly not in our budget.

Confessions

Okay, I'll admit it. I haven't done a good job writing on the blog lately. I took a break over Christmas to ENJOY my kids. Shoot me for being selfish. Lately I feel like I want to rant about stuff, but I don't want to offend people that I consider my friends, I feel like I might. I'm not ready to take that step, so those things that are weighing on my mind are things I'm choosing not to write about on this blog. It's disappointing, because I sometimes think others might really benefit from the information. ((((sigh)))))

It's 2013... a brand new year. We have big things coming up this year... Many things I am looking forward to and some, not so much. But we'll tackle this coming year with as much tenacity as we always do. Things on the radar include:

• Preschool graduation! The Pope will be graduating from preschool this spring and moving on to Kindergarten in the fall! I CAN NOT believe it! I'm excited, but nervous at the same time. Mike and I have some big decisions to make at his next IEP, which is right around the corner. The biggest decision will be where he will begin his schooling career. Mainstream in our public school? St. Lucy's School for the Blind? Other options? It's still up in the air as we're investigating the BEST fit for the Pope. 

• Challenger Baseball!  You probably remember that the Pope played his very first season of Challenger Division Soccer this past fall. Well, this Spring will bring Challenger Division Baseball to the list of exciting sports activities for the Pope to try. We just need to find a tiny glove to fit his tiny hand and we're in business. 

• Dance, dance, dance. The Spring will bring a whole host of dance performances for the Princesses' Dance Troupe as well as her big recital in May. She's going to be a very busy girl. 

• School Musical. I suspect the Princess will also audition for this year's school musical as she has done since kindergarten. This child was born for the stage. A true thespian.

• We are also in the planning stages for our trip to the NFB National Convention in Orlando. It will be a combo convention/family vacation; it is, afterall in Orlando, the home of Mickey Mouse during prime vacationing season. Mike and I have been to a few of the NFB National Conventions in past, but this will be the first time traveling with the entire family. We need to plan and plan well. 

It's a lot to do around work and school and daily living. So please excuse the lack of regular blog updates. I will do what I can. You can also follow me on Facebook. Probably a better way to keep up with our clan!

Thanks AG!

The Princess doesn't like her hearing aids. There was a time, when she was really little, that she loved them. She was about 4 years old. She had purple aids with bright pink, glitter molds. She would show them to anyone who looked in her general direction and loved drawing any sort of attention she could get from them. Fast-forward 4 years. She is no longer a fan. The aids are now an "inconvenience" which often get forgotten in the box, left in a pocket or taken out for any number of excuses. The molds are now blue and gold swirl, to match the school uniform, but it's not enough to keep them palatable. She doesn't like to wear them. When I was swooning to the audiologist four years ago about the the Princesses love for her aids and how well she did wearing them, I was told it wouldn't last. I was told the phase of rejection would come. It comes with every hearing impaired kid. See the Princess can still hear without her aids. Her world does not go into stone cold silence once her hearing aids are out. She just can not hear as well without them. She is unable to distinguish words and phrases, but she can hear that someone is making noises with their voice. She is an incredible lip reader, but turn your head away, and she'll not be able to catch a word of what you're saying to her.

It's hard to make hearing aids cool to the Princess now. I guess the newness and the novelty they had when she was 4 has long since worn off. She's much more interested in "being like everyone else" than seeing the benefit in a tool that makes her life easier and better as a whole. So we were grateful to find out that American Girl had come up with hearing aids for their dolls, I knew this was something we had to do for the Princess and her doll, Rose. On a recent trip to NYC, we took Rose to the American Girl Doll Hospital and she was fitted with bilateral hearing aids... and, at least for now, the Princess is embracing them, once again.