We heard about the “magic” photos you could have taken around Disney, and I wasn’t sure if the kids would want to hold still for any pictures, let alone the extra magic shots. I was wrong – they LOVED them, and it was a blast to come home and download the pictures to see how they turned out. We’re so glad that Melissa with Trips to the Mouse advised us to include the photo pass – totally worth it! Rather than missing out on being in the pictures or not being able to capture shots while wrangling other little ones we could just watch the moments and smile at our kids’ reactions and then have them scan our wristband and be on our way. Continue reading
When writing up Ben’s wish list I tried to type exactly what he was saying. Some of his wishes I told him right off the bat we could do (the zoo, a bike shop, the Apple store) and others I told him NO WAY am I doing that (Antarctica, the Sahara.) Other wishes I knew weren’t realistic, despite how much I wished we could help make them happen – seeing the northern lights, or getting into the Food Network kitchens. (I actually told him the northern lights may be easier to see than the kitchens!) I tried looking into it and read that they don’t do tours and there’s not any way the public can just come peek into the their studios, which I told Ben. He was sad, and said maybe if we went to NYC someday that we could go by and see the outside of the studios? I wasn’t even sure where they are located (I knew the general area) but I told him maybe someday. Then I tried to redirect him to other wishes that I knew were more feasible.
This was all before Ben’s story began to be shared, and suddenly we were going to see the northern lights (I almost fell down when I got the call from Janet at WFAA telling us about that opportunity.) Dreams that I thought were not possible were happening – it was happening. But through all of these incredible adventures when Ben would comment on how much he loved this cooking show or that chef and wouldn’t it be nice if someday we could visit Food Network I would always remind him – Sweetie, I’m sorry but they don’t do tours.
Ben even began plotting how he could get onto the show Worst Cooks in America so he could visit. It became a family joke.
When we were at the Grand Canyon we weren’t sure when the story would air with On the Road, and The Doctors show hadn’t aired yet that revealed Ben had an eSight.
Here’s Steve’s clip:
So we filmed Ben’s initial reaction to the Grand Canyon before trying on his new tool.
He could see the canyon, he talked about how the colors were pretty and it seemed big. I helped him get the eSight on and he began adjusting the settings and then he yelled, “It’s HUGE!!! There’s a river down there!” He kept gasping and saying wow and zooming in and I was just bawling.
Seeing the Grand Canyon was amazing regardless, but seeing his response once he could really see everything was stunning. Ben challenged the other kids to a game of I Spy which he thoroughly won because he now has super zoom capabilities that us mere mortals do not have. His siblings were grinning ear to ear hearing what their brother could now describe for them.
I will never, ever forget seeing Ben’s face when realized how much he could see.
SO we’re in Alaska and we had just gotten back into our hotel room. The kids have taken off their shoes and are cuddled up in the bed watching cartoons before we head back out. Suddenly there’s a knock on the door and Blake, the NBC reporter, tells us there’s a moose right outside! The kids fly out the door – barefoot, no coats – in a mad dash to see a MOOSE! It’s freezing cold! We’re in Alaska!
I’m behind with a three year old who has completely stripped off her clothes because she’s three and they do stuff at that age. I bundle her up in two massive coats and try to catch up – we missed them, and came back in to get warm. Kit and our little ones eventually come back and I see most of our kids are being carried by the very, very kind news crew who realized our silly kids were barefoot. (They also gave our children their coats, which was super nice.)
The barefoot race succeeded, however! There was a moose, hanging out right there at Chena Hot Springs – almost as if it knew that Ben was hoping to see a moose and wanting to make sure that all his Alaska wishes came true.
Here’s the story that was shared, and since I didn’t catch up with them I’m so thankful the news crew was able to document the moose adventure!
During our stay in the NICU we would try to be there when the team rounded on Ben. The nurse would give report and the doctors would all discuss the plans and the respiratory therapists had notes about how he was doing on the ventilator. We, of course, were always full of questions about how Ben was doing, what the next step was, how were things going forward so we could get this boy home to us as soon as he was ready.
We would be daily reminded by them that in the NICU it’s always baby steps – tiny, tiny baby steps. Two steps forward, one (or two!) steps back. They didn’t want us to focus on his homecoming, they wanted us to focus on the fact that he had taken 10ccs in his feeding tube or that his chest x-ray looked incrementally better or that his culture had finally come back clear. There’s not a lot of planning in the NICU – it’s mostly about day to day survival. In a place where miracles are being desperately prayed for and there are too many days filled with tears and complications, it’s literally life or death. You can’t plan a lot in the NICU.
But I’m a planner – it’s how I cope, creating contingency plans and learning about our options and researching. It’s how I can feel some control over the areas I can influence, helping me better let go of the things I cannot change. I’m a mom – these are my babies. I plan.
Plus, I have six babies – planning is key to making it through the chaos. 🙂 Continue reading
The kids were exploring the hall outside the tournament arena and checking out the horses when suddenly we heard a familiar name being called – we were brought up to the king, where Ben was knighted! He seemed to take it very, very seriously – he looked so solemn throughout, it was really cute. Then we were all ushered into the arena where we had seats front and center! It was the perfect view for Ben and all of the kids to get up close to the knights, the horses, and the falcon (Kit says he could feel the breeze over his head as it flew over!)
We dined on garlic bread and tomato soup (which was really good!) and we had ordered some of the vegetarian option as well – hummus, pita wedges, carrots and celery. The main courses were either chicken, ribs, and potato OR a bean soup and both were great! Dessert was a warm apple turnover, and actually one of the best I’ve ever had and I’m pretty picky about comparing pastries to the stuff I had in Germany and France when I was growing up. (Side note if you are going – they only offer tea or Pepsi, there are no caffeine free drinks except ice water. Or the bar.) 🙂 Continue reading
So part of our visit around Texas included a stop to the Austin Capitol. We were planning to just walk through the lobby and take a peek, but Melissa from Trips to the Mouse had more in mind!
Melissa contacted us after seeing Ben’s story and asked about helping make a trip to Disney possible. She set up a fundraiser for Ben and it far, FAR exceeded our wildest dreams. We’ve been keeping it secret from the kids and waiting until we met up with Melissa so she could be the one to tell the kids about the surprise.
But first, the capitol tour was so neat! They took us behind the scenes for some history and civics lessons – Kit and I learned a ton, and the kids were full of questions. It’s a truly beautiful building, and if you get a chance you really need to visit.
At the end of the tour we met back in one of the lobbies upstairs where Melissa was waiting (with a cameraman) to surprise the kids. Melissa pulled out the most adorable Mickey Mouse countdown that said, “___ Days to Disney!” Ben read it and you could see the realization spreading over his face and then he burst into cheers and squeezed me so tight… I’m thrilled Melissa was able to see his response and get some of those massive hugs from him. Thank you also to her husband for documenting it with photos!! Click to see them… Continue reading
So, we were in Oklahoma when we got a call about bringing Ben to California to visit The Doctors show. It was pretty last minute and we had an appointment scheduled for Ben to head into Dallas and visit with the eSight folks, so I told The Doctors I wasn’t sure if we could make it or not – I needed to verify we could reschedule the eSight visit because we were NOT going to miss that! Thankfully the Dallas office said no problem, and we set up the flights to Los Angeles for Ben, me (Heidi/mom) and for our oldest son, Christopher. He was born in LA but hadn’t been there since he was 8 weeks old and we really wanted to make sure he had a chance to see where we lived for that year. Los Angeles was on Ben’s list because he had wanted to see where his brother was born, where his parents and grandparents were born, etc. Thankfully we were able to coordinate it and bring him along. Continue reading