*Welcome, Welcome!*

Welcome to our little corner of the world! I’m Heidi, I’m married to Kit, we have six little ones keeping us busy ranging in ages from 13 down through 4. They’re adorable and amazing and wild and wonderful!

In 2005 our third child decided to show up four months early at a whopping 22 ounces and give us a good scare. This blog was created to keep family and friends updated through our 4 months in the hospital. You can read a bit about his NICU story here.

We’ve since archived those years but last fall we started sharing again because of some new adventures. Ben’s eyesight has been slowly declining (this was expected due to complications from his premature arrival) and we learned he had far more visual field loss than we realized. He started a wish list of places he would like to see and things he would like to do before his eyesight changes further.

You can read some of those articles about his adventures here!

Through the last few months we’ve been working on that wish list and being blessed in countless ways by friends, family, our community, and complete strangers as Ben tackles this challenge with his typical passion. So thank you, whoever you may be! We’re glad you came by and we welcome your comments and messages. We recently set up a page on Facebook to share the wish list adventures, and you can follow it here. We can be reached at heidi@thadenpierce.org or by snail mail through Kit’s work:

Ben’s Wish List
c/o Hobby-Q
PO Box 2107
Lake Dallas, TX 75065-2107

Ben and all the kids LOVE postcards so if you want to send one from your hometown or your vacation spot then they would be thrilled. It’s the next best thing to him getting to see those places in person.

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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.

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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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Seeing Birth

We’ve read through some of the suggestions about things Ben should see, and while some made us laugh very hard (and aren’t appropriate for sharing on a family blog) we’ve had people mention Ben may be interested in seeing a birth.

Ben actually HAS seen a birth! Four years ago when his littlest sibling arrived we gave each of the kids the choice to attend the birth or not. There were two people here specifically to help the kids and to make sure those interested could be in the room and those wanting to be elsewhere could go play. We weren’t sure what the kids would decide but when it came time all five of the kids came into the room to watch their baby sister arrive. (This was made easier since we had the youngest two kids at home – so really it just meant walking from the living room where they were all playing games into the bedroom where I was laboring.)

I wondered how much Ben remembered so here goes – I’ll quote him:

So there was a party, and we had some cake. I think there was a strawberry cake with pink frosting, and it was white on the outside. (He’s remembering the gender reveal cake. The actual birth day cake was pumpkin.) Do you want to know about the actual birth? Or the after party? (I said both.) For the birth Dad was sitting next to you in the pool, and Jean was standing by, and somebody was standing by with a big rack of stuff. (They brought in all their birth supplies.) Then when Livy got born we all sat down and started hugging her and we were all really happy. Then we went and had the party!

So while Ben’s memories are focused more on the food than the miracle of birth, I’m glad that his overall impression of birth is positive. :)

Keri Duckett was the birth photographer with our youngest. Yes, we hired a professional photographer to attend our birth and that’s actually in large part because of what happened at Ben’s birth. You can read about that here.

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Adventure & Eyeball Updates

It was six months ago today that Ben’s story first aired on WFAA here in DFW, and what a whirlwind it has been! We’re obviously still playing catch up on the website but THANK YOU for each comment left and kind message we’ve received!

We’ve gotten some similar questions and suggestions so to answer some of those:

* Regardless of how Ben’s vision progresses we will continue to travel and explore the world, though the trips will be much more spread out in time! We’ve been blessed by an outpouring of support in helping make some of these wishes come true sooner rather than later, but our family will make sure we continue saving towards and working on these wishes over the next few years as well.

* We’ve seen multiple doctors to receive second (third, fourth, fifth) opinions about his vision now and his prognosis for down the line. No one wants to predict what it will be as he grows, but we continue to need new glasses each eye exam as his prescription changes. His most recent exam was last week and his new glasses have been ordered. We are optimistic – unless he has a retinal detachment (which the surgery in the NICU prevented at that time) he will always have light awareness, no matter how colors change or things get fuzzy. While some doctors say he’s higher risk for retinal detachment because of his condition and the scarring, we are feeling cautiously hopeful that he’ll be okay. He gets retinal exams to check on them and wears sports/safety goggles.

* You are so kind to ask how you can financially help make some of Ben’s wishes come true. His wishes have come true, almost every single one! We’re encouraging you big hearted people to consider donating instead to another vision related program:

Lighthouse for the Blind of Fort Worth provides Ben’s cane training for free and assists individuals with vision challenges in a variety of ways. You can donate to them here.

eSight is a device helping people like Ben see again. We were blessed to receive one (the video clip is on that page) and you can help make that possible for others through their page here.

* Adventures to come:
- Disney World
– Mardi Gras in Houma & NOLA
– London & Paris
– Monohan Sand Dunes & Carlsbad Caverns
– Washington DC

* Possibilities we are discussing:
- Great Wolf Lodge
– Redwoods & San Francisco
– the Parthenon in Tennessee

Plus many local visits to museums and such in town. The wishes keep coming true, in large part thanks to YOU!

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Pumpkin Patch Memories

Ten years ago I spent the morning at the pumpkin patch with Kit, one of my sisters, and my two kids (C and Mo were 3 and 1 at the time.) I was ten weeks pregnant with Ben. By evening I wasn’t feeling very well, went to see my midwife, and we learned that we were developing complications (again, we had just miscarried that summer.) Thus began the 3 months of roller coaster emotions and bad news as we hoped and prayed Ben would keep growing safely despite the problems.

I avoided the pumpkin patch for the following years – Ben was high risk for respiratory illnesses and on oxygen the next year, and still in isolation for winter the year after that. It wasn’t rational but in the back of my head I just didn’t want to return to the pumpkin patch and be hit by those memories – I felt guilty and fragile and scared. I eventually got around to it – robbing my kids of the fall festival fun wasn’t fair. :) But I can admit the autumn/winter dates around those events were really rough anniversaries for me.

This year as we hit the decade anniversary I thought it was time to celebrate how far we’ve come and go hit a new pumpkin patch with one of my sisters and her kids. It was a blast, and Ben adored the enormous pumpkins and cottages and the kids rolled down the grassy hill and we had a lovely day. Hard to believe that ten years ago we were in such a different stage of our life, and I’m so grateful to be standing here now with my healthy kids as they laugh and explore.

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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.

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

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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.


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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.

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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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Moose!

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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