2015 Wrap Up!

I know, we’ve been quiet around here on the blog – but that’s because life with our six little ones has NOT been quiet! Between home schooling and both parents’ work and growing kids with activities and therapies we’ve been juggling a lot. We’ve continued to receive postcards and notes from you and it’s been wonderful!

Last year Ben had some beautiful, huge wishes come true, so here’s a recap – each one of these deserves their own post and photos, which we hope to get up to share with you one of these days!

January: Kit took the older kids to watch the Harlem Globetrotters and Ben got to do the toss up – he was so tiny in comparison to those players, and he said it was fantastic! The next week Ben turned ten and requested shrimp alfredo and key lime pie for his birthday dinner. He’s our little foodie. Continue reading

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Los Angeles Adventure

So, last fall 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

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The Impossible Wish

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.

Continue reading

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Ben eSights the Grand Canyon

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.

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On the Road for Another Adventure

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New York City – Day Three

Our third day we granted the kids’ wish to try a New York bagel (they approve) as we walked down to the Museum of Modern Art to see Starry Night.

It was breathtaking.

Then we headed back to our hotel to be picked up for the Katie Show, and everyone was so gracious and warm and welcoming! (More on that later, I’m writing my outline now as I play catch up!)

Among the many surprises we received, Ben and Kit were able to attend Wicked that night. (Ben loved it, of course, he loves musicals of all sorts!)

We flew out the next morning, and it was a whirlwind adventure of NYC that we’ll always treasure!







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New York City – Day Two

Our second day was full of lots of running around and memory making. Kit and five of the kids met up with someone from Katie’s show to help them go check out the Statue of Liberty then meet us at Central Park for a picnic. Ben and I headed off also to catch the Statue, but also the Empire State building and then the picnic. In the afternoon we napped the kids before taking Ben and C to a comic book store, then everyone headed to dinner at an arcade and on to Times Square. The kids requested we take the subway home as that was their favorite mode of transportation all day. 🙂










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New York City – Day One

We were invited to New York on Friday right after Ben’s story aired on WFAA, and we didn’t tell the kids until Sunday evening. I was just quietly packing up and hoping they wouldn’t notice. 🙂 We had a scavenger hunt set up on Sunday that gave them various hints around the house until Ben opened the final clue (a “Big Apple”) and there was much screaming and rejoicing. We flew out the next morning, and since our kids had only flown once before this was a very, very exciting day.


I now realize how unusual this is that the pilot let the kids check out the cockpit:



We were picked up by a driver and taken to our lovely hotel and then went exploring – just down the street was an Apple store, and you already know Ben’s a HUGE Apple fan.


A couple more blocks down and we found the place the hotel suggested – a kid friendly hot dog spot. I was laughing because these are world famous hotdogs, and since our kids rarely eat meat they pronounced them the world’s BEST hod dogs, too.


We wandered back towards the hotel and got a picture by the Lincoln Center across the street then tucked the kids into bed early. Or we tried, but they were so excited we had a couple night owls watching the traffic out our window on Broadway.

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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!

NBC Anchorage story – including footage of the barefoot moose run!

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Because Miracles Happen

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. 🙂

I’m sure there were times that our medical team was bracing themselves during rounds, wondering how many questions I would be throwing at them that day and how unrealistic my hopes were. Sometimes they would take notes so they could go research and get back to me with answers. Mostly they just gently reminded me that we didn’t have a lot of answers and we were all just waiting and seeing. Some days they would tell me that it was truly incredible that Ben was doing so well, and other days they would sit us down for an explanation of the complications. Always they would make sure I knew that Ben’s presence with us still was a miracle and we didn’t know what was going to happen next.

But because I’m opinionated, I would tell them what OUR plan was – our hoped for timeline, what we wanted to see happen, how we anticipated things going on this journey so we could get all of our kids together under one roof. (Having one baby living at the hospital and two little ones almost an hour away was torture for this momma.) I needed my family together, and I wanted to know what we were going to do to make that happen ASAP.

At first the care team seemed rather skeptical, and unsure of what to make of this crazy mom who seemed very much in denial about how serious the situation was. They sent the social worker into us to assess if we knew the gravity of his condition, what we face when a baby comes 4 months too early. (We did understand somewhat – but that didn’t make us hope any less.) Then over time they seemed less skeptical when I made requests, because to their surprise some of these little things started happening. Oxygen settings weaned down, weight gained, tiny changes that amounted to ENORMOUS miracles. And I gained more confidence in voicing my thoughts, in trusting the whisperings that came when I was searching for answers and praying for direction. I know that parents can receive guidance and inspiration when it comes to their kids – and I had that verified in a thousand ways during our hospital stays. There were days when the team literally laughed at my announcements (not mocking – just amused and shocked and we were all friends at this point so it was okay – I was laughing, too.) When I told them I was going to hold him while he was on the vent and under 2 pounds – that’s a great story! Or when I said we were going to start nursing, when I let them know what day I planned to bring my son home. Because against all the odds and despite all evidence to the contrary – things were happening. Things that didn’t normally happen, through it all this gigantic spirit in this tiny body was making his opinion known.

One day when I was sharing our agenda for the week we were all laughing at my absurd prophesies – I think I had told them that Ben was going to wean off the vent and be on CPAP by the end of the month, which we knew wasn’t very realistic. But one of his team members said even though we were all laughing, she believed me – because she said Ben had his own agenda and his own plans, and I was simply speaking aloud my son’s plan. We all observed that he had his own way of doing things, and he was going to keep surprising us. Against the odds, miracles seemed to follow Ben.

Ben’s wish list had some seriously unrealistic items – including the northern lights. People travel thousands of miles across the world, spending thousands of dollars and staying for days (weeks!) to try and catch the northern lights and still sometimes miss them. Despite the forecasts, there’s no predicting exactly when the lights may show up. Just being invited to Alaska itself was HUGE, and amazing and we told Ben that we would go but may not see the lights at all. The town was praying for the lights to show up for Ben, but we needed clear skies and the right conditions and I didn’t want to get his hopes up. I was so nervous as we went to bed that first night – praying for even a little bit of the lights to show, praying if they did show that Ben would be able to see them, praying that everyone making this happen would know how grateful we were!

Then the knock on the door – THE LIGHTS ARE OUT!! And throwing snowsuits on little ones and laughing through my tears and racing out the door and THERE ARE THE LIGHTS!! And Ben could SEE THEM!! He stood, mesmerized. We hiked up the hill and cuddled together and stared in awe as the sky danced before our eyes and the stars shone and Ben saw the northern lights.

Later during our stay I was talking with one of the visiting reporters and I said I didn’t want it to sound like I’m taking this for granted, because I understand this was truly shocking that everything aligned so perfectly and we were able to witness this. I know that. But at the same time – I’m not surprised. Because this is Ben – it’s Ben, and this is the boy that has been defying expectations since before he was born. Miracles follow this child, and we continue to be amazed and thankful beyond all words.

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