Ben tries out his cane
Ben is just starting to walk but we wanted to introduce a cane to him right away. We don’t expect him to use it properly anytime soon – he doesn’t even have an O&M instructor yet – but we thought it was important to get him (and us) used to the idea of his cane as being a part of geting around. Right now he mostly thinks it’s fun to bang on the ground and chew on, but some day soon his cane will be his best friend. Learning to use a cane will be an important part of Ben being independent.
Benjamin’s cane is a free cane provided by the National Federation for the Blind. Special thanks to Barbara Pollard whose donation to the NFB provided the cane for Ben. You rock!
I’m sure we’ll be writing more about the cane as Ben gets better at getting around, and especially as he heads out into the wide world.
Also – you may notice the blog is changed a little bit. We gave it a new look and changed the title a little. It’s just “All About Benjamin” now – no more “baby.” Benjamin is growing up!
Amy, Ben and I drove up to Boston this past weekend for the Early Connections conference at Perkins School for the Blind. The event is centered around educating parents of visually impaired children up to 7 years old. It was really wonderful to meet other parents who have similar stories and meet their kids. One of my favorite sessions was a panel of visually impaired and blind teenagers who were about to go to college talking about how their parents helped make them independent by treating them like any other kid – making them do chores, not coddling them, not having lowered expectations. Watch out Ben — looking forward to you doing the laundry!
They also had tables set up from different organizations and vendors showing off their accessible gear. During the conference Ben got to have fun while his folks were learning with a full scheduled day with the other kids.
Perkins was a beautiful campus and has amazing facilities. I wish we had something like it in New York City. But of course we were so busy we never even took a picture – so I have nothing to share today.
We also had a nice visit with our Boston friends. We will be back again, so maybe pictures next time!
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
As many of you know, and some of you don’t, the reason that Joe and I had to find the wonderful Carol to be a gestational surrogate for us is because at the age of 27 I was diagnosed with colorectal cancer. Before they radiated the heck out of me (and determined that putting shields in to lift my ovaries wouldn’t work), I went through a whirlwind egg-retrieval and embryo-making.
I am outrageously lucky and blessed that my treatments worked and today I am very healthy, give or take the missing section of my insides which makes eating french fries a rare luxury. In 2010 I celebrated being 5 years cancer-free by learning how to run (run being very broadly interpreted) and completing my first 4 mile race- the Get Your Rear in Gear run/walk. Last year’s run was put on hold for The Semicolons (get it?) due to the arrival of Mr. Ben, but this year we picked up our running shoes again.
~The 2010 team
This year’s Semicolon’s were quite distinguished. Due to Joe’s t-shirt design skills, we won “Most Creative Team”, and our very own Bill came in 5th overall, which gave him time to run home and freshen up while the rest of us straggled behind (though Cristina came in a respectable 21st for Women). My time was 54min, due mainly to my technique of only running during downhill grades. I didn’t really keep up with my training, and downhill running is way more fun. Even Ben participated, waking the 4 miles in style (his stroller) with his Grandma.
- ~This year’s “most creative” team
I have to thank everyone who put up with my incessant begging on Facebook, and extra thanks to those who donated, and extra-extra thanks to those brave folks who met us at Prospect Park insanely early on a Sunday morning to support colon cancer awareness and early detection, and of course those that showed up a little later to cheer us at the finish line. To get on my soapbox for a moment, if you have a family history of colorectal cancer, OR are over 50, please get a colonoscopy and catch anything potentially cancerous before it turns into cancer. Trust me. Chemo, radiation and surgery are way less fun than the brief discomfort of a colonoscopy. Colon cancer is the number 2 most fatal cancer, but it is also one of the easiest to detect. And it is not, much to my surprise, an old man’s disease.
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.
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 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).
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.
One year ago this week began a seriously scary time. It was then that Carol’s water broke – PPROM – at 19 weeks. I don’t know how much you know about PPROM – but it happening at 19 weeks is bad – like almost no hope bad – like assuming that infection or bleeding will end the pregnancy within hours bad.
We talk a lot about Benjamin’s prematurity and the challenges involved but that month before he was born changed everything. PPROM (Preterm Premature Rupture of Membranes) is scary. But if you read the support sites or the facebook groups for the women going through this – you will be amazed by the hope they share and the strength they give each other. Carol had that hope and that strength times ten and she never gave up on our baby. No one would have ever blamed her if she did. I think part of each of us imagined we were just prolonging the heartache – the odds were so slim.
Carol (for those of you joining us mid-story) was our gestational surrogate – she carried our embryo (later fetus, later Benjamin). To a lot of people the idea of a surrogate is strange. Some imagine it is some sort of business relationship or a situation we would later hide from our child and pretend never happened. But let me tell you this – I cannot imagine another person, who we only knew for a few months, who would have done everything she did for our son. When we started, Carol might have been our surrogate, but by the time we got through it all, Carol was family. And Carol’s family was family. She was amazing throughout the hospital stays, the never-ending bedrest, the time away from her husband and children and doing everything she could to last one more day to let Benjamin cook.
The month between the PPROM and when Benjamin was born was rough. I don’t think any of us slept much, we were scared of the phone ringing, Amy and I didn’t know what to do with ourselves. But every time the doctors did another ultrasound (which was pretty much constantly) they seemed surprised Carol kept going. And go she did – just over the border of viability. 23 weeks, 3 days.
So, though we have said it many many times- Thank you Carol, thank you Carol’s family, thank you Carol’s friends and everyone who supported her and us and Benjamin.
And if you have stumbled upon Benjamin’s blog because you or someone you love are dealing with PPROM – please stay hopeful. While Amy and I would never have gotten to be parents without doctors and science – they only get you so far. That last stretch was all faith.
Carol and Amy - after the very first ultrasound (before things got scary)
November is Prematurity Month and today (what’s left of it) is World Prematurity Day. So we wanted to do our part to spread some awareness around. Some info:
- In the United States, 1 in 8 babies is born prematurely that’s about 543,000 babies a year
- Worldwide, 13 million babies are born too soon each year
- Babies born just a few weeks early are at risk of severe health problems and lifelong disabilities.
- Premature birth is the number 1 killer of newborns.
- Tonight, the Empire State Building will be glowing purple and white in honor of March of Dimes and World Prematurity Day.
So do your part – don’t be born early. Even if all your friends are doing it. Just say No.
And you can donate to a worthy charity such as Graham’s Foundation. We mentioned them before – they are a great organization that supports families of micropreemies with care packages, information and community. We are fans.
It seems like a million years ago and like yesterday.
Benjamin's first days - born at 23 weeks, 3 days - 1 lbs, 12 oz