One time at blind camp….

We spent last week at VISIONS Center on Blindness (formerly Vacation Camp for the Blind) with Benjamin and had a great time all around. VCB is not too far away from us, but it is on a big piece of property in Rockland county and was a nice break from the city.

The week we were at VCB it was reserved for families with children with visual impairments up to 5 years old and children with multiple disabilities of any age. And while every kid is very different, it was really good for us to meet other parents who understand first hand what it’s like. Other weeks throughout the summer are set aside for older kids and adults, so Ben can look forward to visiting VCB for a long time.

Ben got to play all day, socialize with other kids and go in the pool while Amy and I went to workshops and parents groups (as well as a good amount of just plain relaxing). Each evening the center ran events and even had a couple of parties.

The counselors and the staff at VCB were amazing, wonderful people who could not do enough for the families staying there. You could tell how much they cared about being involved at VISIONS. It really made it special.

We are grateful for the friends we made at VCB and we can’t wait to meet up again. Special thanks to everyone at VISIONS for a great week and to everyone who helps support it, including our regional Lion Clubs.

And now for some cute photos…

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Rock and Roll Fundraiser!

Benjamin is an extremely lucky little boy. He has family and friends who love him so much. He also has organizations that have helped him and will be there to help him in the future. One of these organizations we are grateful for is Lighthouse International. Lighthouse is where Ben’s early intervention is organized out of and they have been fantastic helping us get everything possible to help Ben get a good start.

So when our friends Greg, Matt, Jo-Ann and others asked if they could throw a benefit in honor of Benjamin, Lighthouse was one of the first places we thought about. So we are super excited to share that Greg’s company JP Reis is going to host an open mic evening in New York City to raise money for this great organization

Everyone is welcome so bring your singing voices, instruments and dancing shoes for a fun night of musical free expression; you can bring your whole band if you like! The list of guests and confirmed musicians is growing fast.  Entry is free and there will be happy hour specials. At the event there will be opportunities to support Lighthouse and hopefully I will be able to share a link for donations even if you can’t attend.

You can RSVP here.

Event: Rocking Wall Street

Date:  12th September

Time:  6pm the music starts at 7pm.

Place: Suspenders Bar, 111 Broadway, Financial District, New York

Lighthouse International has led the charge in the fight against vision loss through prevention, treatment and empowerment for over 106 years. We know that Lighthouse will continue to be a resource for Benjamin as he gets older – and we are proud to be a part of this event.

Thank you so much everyone involved in planning this – it means so much to us.

(also – we know we haven’t posted in forever, but we have lots of photos and updates from our summer… for now, accept this cute photo as a placeholder)

Benjamin at the PEZ factory

Benjamin at the PEZ factory

Take me out to the Beep Baseball game…

Yesterday Amy and I took Benjamin into Central Park to watch a Beep Baseball game. Beep Baseball is a modified version of traditional baseball played by visually impaired and blind athletes. The baseball itself beeps, so the player can hear it and when a batter hits the ball he or she must run to a “base” which is one of two padded posts (randomly chosen) 100 feet out from home base. The base buzzes and the player has to reach it before the fielders find the ball (still beeping) and hold it up. (You can also read a great article the 2009 Beep World Series here)

The teams playing yesterday were the Long Island Bombers against a team from the radio station WFAN. The Bombers team are “a dedicated group of baseball enthusiasts from the Long Island and Tri-state area. They just happen to be blind and visually impaired.” While they play their regular season games against other visually impaired teams, most games are against teams, like WFAN, who have sighted players, using blindfolds.

LI Bombers at bat

Imagine hitting a ball based only on sound

The Bombers played a great game and showed some real athleticism, beating WFAN 9-1. Maybe one day Ben will play on a beep baseball team. Even if he doesn’t we are glad to know there are teams like the Bombers educating people about blindness and overcoming obstacles.

LI Bombers

LI Bombers pose after beating WFAN 9-1

Best of all it was a beautiful day to be in the park. Ben enjoyed the grass and got in a nice long nap during the game (takes after his dad who has napped through his share of televised Mets games).

dad and ben at the game

The boys enjoying the game

In other news, Benjamin will go back to the hospital at the end of the month for a follow-up EEG to see if the anti-seizure medicine is working. He will stay a couple of nights there. But as far as we can tell, the vigabatrin is really helping with his infantile spasms. We haven’t seen one in over a month. Fingers crossed his EEG comes back normal too.

Lights and Shadows

Yesterday Benjamin had his follow-up with the eye surgeon and we were not surprised by the news. The blood has finally cleared up in the right eye, but unfortunately the situation there is similar to his left eye – the retinas are folded. What does this mean? Since the retinas are still stiff and are not unfolding, Ben will have extremely impaired vision – as in almost no vision. We suspect he can see very bright lights, as he reacts sometimes to the sun and lights shined directly into his eyes, but he probably can’t see much past lights and shadows. The surgeon said there isn’t anything more that can be done at this time. But he hopes that over time (as in a year or more) his retinas will become softer and then he can attempt to re-attach them. We have another appointment in 2 months and at that point we will see where we are. We will probably also consider a second opinion to fully explore our options, but Dr Lopez is _the_ guy for this sort of thing.

The funny thing is – Amy and I left the appointment not too shaken up about it. We had already come to terms with this and expected to hear the news. We are ok with it.

You may say “With technology always changing you shouldn’t give up hope.” The thing is, we aren’t going to place our hopes in some future technology – otherwise I’d be researching longer pants for when technology can make me 6 foot tall. Ben is what Ben is – and we’re going to make the most of what that means.

It will be different – yeah. But it’s not like we have ever raised a kid before anyway. As I told a doctor today when he told us to let him know if we noticed anything unusual – “We’re first-time parents – it’s all unusual to us.”

We’ll figure it all out, and Ben is going to be great.

Also, on a related note, Amy and I recently watched a trailer for an upcoming documentary on blind teenagers that really moved us. I shared it on Facebook, but I also want to share it here.

The film seems to be a labor of love – you can find out more about it here: http://www.doyoudreamincolor.org/