*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 12 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.

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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 Fransisco

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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LEGOLAND & SEALIFE

While I was home with a sick kidlet, I hear the kids and Kit had a blast! Lucky for me this is just half an hour from our home so we can get back someday to see all the fun I missed.

Legoland Discovery Center in Grapevine and SEA LIFE Aquarium.

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Medieval Times

Medieval Times and Kiss FM invited our family to attend a dinner and tournament, and this was a first experience for all of us.

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.) :)

Knowing we have some sensory sensitive kids we brought ear muffs (I highly suggest those if you have little ones) as they were LOVING the show, but covering their ears until we grabbed the headphones.

As our knight rode by he handed a carnation to our littlest, which made her giddy! I could tell the older girls were a bit envious but they smiled and clapped. The knight leaned in and told our oldest daughter, “I’ll be back for you.” Not wanting to get her hopes up I said maybe he forgot as he passed a couple more times tossing flowers higher up into the stands to other ladies. Throughout our meal the tournament was happening and then each of the knights came riding out with a sash tied to the end of their lance. They selected a “Queen of the Tournament” from their section of the arena and our knight chose our oldest daughter! She was blushing as she pulled the sash off the lance and they took her photo – it was so cute.

But this meant our middle daughter was sitting there smiling for her sisters, but feeling a bit sad. As the knight passed again he told her, “I’ll be back!” I admit I was wondering if she had heard him correctly (she insisted he told her this, I didn’t hear it over the noise) and I didn’t want her to leave feeling forgotten.

However, our black & white knight won the tournament! Which meant the knight got to pick “The Queen of Love and Beauty” to receive a sash and tiara – and guess who he chose?!! Our daughter was ecstatic, and I’m betting she’ll be sleeping in that tiara. :)

So all in all, it was a magical evening of excitement and yummy food and adventure. The kids felt like royalty!! As you can see in one of the photos below, when our littlest sat herself down outside the castle and refused to leave because, “I want to stay here FOREVER!”

Our 8 year old daughter’s version:

We were on the black & white knight’s team, and he was passing out flowers. He blew me two kisses, saying, “I’ll be back.” And then near the end I became The Queen of Love and Beauty, and he proposed to me! And I met the princess, and got a tiara, a sash, and a picture of me, the princess, and the knight. By Emy.

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Texas Capitol and Trips to the Mouse

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!!

Austin news story about Disney surprise

THANK YOU to Trips to the Mouse for making this dream into a reality.

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