Monthly Archives: December 2013

Happy News Spreads – Thank YOU!

Ben-1I couldn’t hold Bennett for the first six weeks of his life. He was too sick, too unstable, and on a special kind of oscillating vent that meant jostling him at all could trigger a cascade of problems. While the hospital was a huge proponent of kangaroo care, in Ben’s case it wasn’t the best choice. Babies born weighing as little as him are just so fragile, even touching his skin left bruises. Instead we would sit by his bedside every day for hours and I would whisper to him while I touched him (gently!) and imagine the day he would be home with us. I would tell him about his big brother and big sister and how eager they were to hold him and love on him. During those long hours I would listen to the ventilator breathing for him, trying to tune out the alarms and beeps and noises and focus on willing my son to grow. To heal, to become stronger every day and to come home to us. I would picture a future when he would be healthy and thriving and laughing, chasing after his siblings and continuing to amaze us all.

I remember telling Ben that I didn’t know why he came so early, I wasn’t sure what the plan was here but I was trying to have faith that it would all be okay. Whatever he needed, whatever was to come, his family was ready to help him take on any challenge. I told him he was changing the world already, that his story was being shared and he was inspiring people with his determination and strength. This tiny, fragile boy was going to make the world a better place just by his will to overcome hurdles and live. Against the odds, when everything seemed so bleak, he was determined!

Today I showed Ben how his story about visiting the Apple store had been shared in China and India and how people around the world were visiting this website and hearing his story. He read through the comments you’ve left sharing your sweet words and encouragement. His smile was ear-to-ear, and I sat there with tears in him eyes watching his reaction as he read.

Because he can READ. He still has enough sight to read, and isn’t that miraculous?

And he knows where these locations are! He showed me China and India on the map, he’s a big geography fan. 🙂

But most of all he was touched by YOU, that you took the time to tell him that his story was meaningful for you to read. We’ve all been touched by your comments.

Bennett has no memory of those days and months we sat by his bed in the NICU and prayed for him to live and prayed to understand… but I remember vividly that experience, and the impression that someday this would all make sense. That Bennett’s challenges were going to be hard, but he was going to be surrounded by love and support and he was going to make this world a better place.

This week, as we’ve heard about his story being shared, in some tiny way we’ve gained a glimpse of how that’s come true. I know each of us can make the world a better place. It’s been incredible for Ben to have this opportunity at such a young age to see that he can influence the world.

So thank you. 🙂

The Pet Rock Museum a.k.a. The Perot

Today was another wish list trip surprise- the Perot Science Museum, with bonus of meeting their cousins there (literally in the parking spot next to us as we pulled up!)

It really is as engaging and huge and fun as we had heard. We barely touched the tip of the iceberg and will be back soon for further exploration. More detailed post about accessibility features when I am not typing on my phone in a bumpy car on I-35. 🙂

Processing & Challenges

glassesBen was less than a year old when they told us he couldn’t see well and needed glasses. He had a laser surgery on his eyes in the NICU when he was just a couple months old because of the eye condition (ROP) which can cause blindness if untreated. A pediatric ophthalmologist and retinal specialist were both seeing him and did follow up after we were discharged. When they told us he needed glasses I argued with them for quite awhile. I insisted Ben could see just fine – if I smiled at him across the room without saying a word he would smile back at me. He could see! They were very patient as they tried to explain to me the condition of his eyes and how he would probably experience more vision loss as he grew. I told them they were wrong. I asked how they could possibly determine whether a non-verbal (and rather non-compliant!) baby needed glasses. They spent hours explaining to me and answering my dozens of questions over the years that followed. He got glasses when he was a year old, just as he started to take steps. He broke 47 pairs in the first year. His record was breaking three sets in less than 24 hours – one set literally as we left the parking lot from getting the previous pair fixed. The glasses shop knew us well!

Every six months (or more often) we would take Ben in for another exam and they added a vision specialist to his therapy team and talked with us about braille and low vision and independence and treating him like the other kids, just modifying some expectations related to the vision limitations. They talked with us about protective eye gear and retinal detachment and through all of it even as I read and listened and researched and took notes I kept saying in my head (and sometimes to them) – NO. He’s not blind. He’s not going blind. We don’t need to learn braille because he can see. At three years of age he started sounding out words! By four he was reading! I felt vindicated – see, he can read! At one point I remember asking if he really needed the glasses at all since he was reading just fine, thank you very much. Continue reading

Apple!!

The title of this post is because when we walked up that’s what Ben yelled – APPLE! Safe to say he’s a fan.

A bit of background for those not familiar with his story – you can read a snippet here and see some photos of Ben just after he was born and in the NICU. Eager to join the party, Ben arrived at just 23 weeks gestation and weighed only 22 ounces (630 grams.) He developed an eye condition because of his early entrance which has caused him to be visually impaired. Thankfully he can still see relatively well from one eye, enough that he can read print up close and uses a magnifier. Unfortunately his vision will continue to deteriorate over time and there’s no way to know how much vision he may maintain.

Not that it slows him down at all!

We were encouraged to give him lots of visual memories before he loses more eyesight so he made up a wish list. We were amused he asked to go see the Apple Store! We told him we weren’t sure when we could make that happen but we would try someday. One morning we woke them up early to “run an errand” and this is what happened next… (more background story is included below the gallery.)

From almost the time Ben could walk he’s been obsessed with our various Apple devices. He would sneak off with them as a tiny toddler and drop them or do other destructive things. He sucked on a few power cords as a baby and shorted them out. He had a super power of finding them no matter how far we hid/buried them away behind the couch. It got to the point that we were visiting the Apple store so often when we walked in they would greet him by name and say, “Hi, Bennett! What did you break??”

Thankfully he outgrew this habit and we’ve not been to the store in years since Apple stuff really is durable. Funny that the other five kids haven’t been able to do any damage when he did so much – we joke Ben was doing crash testing on it, research for his future career at Apple building gear you can’t destroy. I want him to work on shatter proof screens since I broke one of those.

When I was on bedrest a few years back with our youngest child the older ones had a field trip to the Apple store. Bedrest meant we couldn’t all go and sad Ben had to stay home with me. During the trip the kids composed songs with Garage Band and got yellow t-shirts – Ben’s favorite color. This left quite an impression on Ben and when asking about his wish list for trips and places to see he said the Apple store! To get a yellow shirt and ask the Geniuses questions and play on an iPad! We thought that was an easy request to fulfill, though we weren’t sure if we can manage the t-shirts since we’re not an official field trip.

We had mentioned his wish on Facebook because we thought it was so funny and to our surprise learned – wait, apparently we know some people who have Apple connections! They contacted us and asked some questions and started making some plans and were absolutely fantastic every step of the way. While we were hoping to just visit the store and let Ben play at the kid table, the Apple folks had so much more in mind.

Over the last few years Ben’s various vision team members have talked about how wonderful the iPad is as an assistive device. Kit researched and learned more about the amazing technology it has to help people with visual impairments & the long list of apps great for kids with visual disabilities. Even built in features like Siri can make a significant difference in the day to day lives of someone with a vision challenge. We just didn’t know how to make that happen with the budget, so it was something we kept in the back of our minds but hadn’t pursued. Once again little miracles started to fall into place with offers of help, surprises here and there, and so much support and love from friends and family. Suddenly the dream of an iPad for Ben was becoming a reality!!

One night Ben came into my room after bedtime and asked if I could learn more about taking a field trip. We looked online and I told him the field trips aren’t being planned until spring but maybe we could go then? I also told him they don’t sell those special yellow shirts, those are just for field trip kids. We talked about making it happen someday and when he saw the picture of the store online he said, “Wow… awesome!” So he kept hoping to see Apple but knew he needed to patiently wait.

Meanwhile we plotted and planned and this morning we told the kids we needed to run some errands and meet Shannon to return some things to her. Shannon happens to be a dear friend and photographer and she had so sweetly offered to be there to document this experience. There was much texting and coordinating going on as we got up early (before the store opens to the public) and headed out. The kids knew we had a surprise for them but we needed to meet our friend at the mall first. As we walked up to find her what did we happen to see?

The Apple Store.

And what was happening there? Rows of people all dressed in red clapping and cheering and welcoming our family. As you can see in the photos, Ben’s face just LIT UP when he recognized the store. When he realized he was allowed to go inside??? He was stunned. When they greeted him by name? SHOCK! He got a bit bashful as he passed so many people cheering for him. (He later said he felt like a celebrity and wanted to know how they knew his name???)

They did a mini tour & he was allowed to stand behind the Genius bar, which was so impressive to him. Then he asked me if he could play on one of the iPads at the little table like the kids were doing before we left. We sat down and explained not only could he play on one – but the one they had just shown him was FOR HIM. People who loved him had helped make it possible for him to have an iPad of his very own.

Shock. He just sat there staring at the box straight faced. It was probably a good minute before he blinked and asked, “For me?” Yes, I explained – for you to play on not just now but to KEEP. More shock.

The reality set in when they handed him the box to open and he was all smiles. He lifted it out of the box and said, “I get a charger??” Yes, an iPad AND a charger! 🙂 (He’s so easily impressed, I love it.)

Then they spent time talking with him about the assistive technology and zoom and reading books on it and Garage Band and games and Siri. We need to go back for sure to learn more about all of it, Kit said there’s tons we need to explore for Ben. Then I got lots and lots of tight squeeze bear hugs as the reality sunk in for Ben – he got to visit Apple! And tour it! And see a computer and the genius bar and talk to so many sweet people and he got an iPad!! And a t-shirt! Then he told me, as he hugged me tight again, “This goes on my list of best days ever!!”

So to everyone who helped make this possible – thank you from the bottom of our hearts. You made his dream come true, and I know that every single day of his life will be enriched by having this as a resource and tool for independence. Okay, and he’ll just have fun with it, too!

P.S. We’ve been asked how the other kids are handling this situation with B’s vision loss and how they reacted to seeing B get something this big. You can read their responses here.

P.P.S. For our new visitors coming through links to this post – WELCOME! Ben’s been reading your comments and loving every single one. He’s grinning ear to ear knowing that his story is helping other people feel happy. Thanks for your kind words and support! If you have any questions please feel free to contact us – we can be reached at heidi@thadenpierce.org.