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. ๐Ÿ™‚

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.) ๐Ÿ™‚

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. ๐Ÿ™‚

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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Albuquerque by Elvis!

Thanks to Elvis Photography for helping document our amazing adventure!

You can see the news reports here:

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The Grand Albuquerque Adventure

I’m still laughing that Albuquerque was on Ben’s wish list! We knew almost nothing about this town, but we knew it was on our way back from Arches National Park and a good place to stop and stay the night.

Then we got messages from a couple locals in that incredibly friendly town and suddenly our overnight trip (just so we could say we had been there) was becoming SO much more. More than we could have ever possibly imagined.

Thank you to Katie Herrera of Tyler Brooke Photography for making this epic adventure possible, AND for documenting these sweet moments. We’ll treasure this experience forever, and the kids have been asking repeatedly when we can go back to visit Albuquerque again. We fell in love with the city and the people.

On to the photos! (More to come tomorrow!)

First was the 6am meet up with the news crews while we had breakfast (thanks to The Village Inn) and then there was a mini-hot air balloon festival!! Which included Ben and Kit heading up, and Ben’s grin was ear to ear. They had a sparkling cider toast afterwards as Ben got his first flight certificate and the kids all enjoyed collecting the hot air balloon cards. (We really need to go back for the huge international balloon festival one year – it’s in October. You should go.)

Then the fire department joined us so the kids could explore the truck AND spray the hose?? (Okay, isn’t that a wish come true for most of us? Just me?) Those photos are coming tomorrow…

The fire department then gave the kids a ride over to Frontier restaurant. When we told friends where we were heading we had multiple people here in Dallas told us we MUST try the Frontier cinnamon rolls. They gave Ben a special tortilla making lesson, we sampled the cinnamon rolls (yum!) and oh, right – we had breakfast with the mayor. ๐Ÿ™‚ (I had the breakfast burrito – best I have ever tasted.)

The restaurant is across the street from the university and Ben asked the mayor if the city offers a tortilla making scholarship. I love our little chef!

Next up was old town and the rattlesnake museum. It’s a good thing I’m not scared of snakes, as this place had all sorts of slithering little friends that my kids were fascinated by. Side note, the museum gave us a welcome back and it had mints in it an adorable little tin that said Albuquerque and the mints had chills or hot air balloons on them!

After some nap time we enjoyed a yummy, yummy dinner at El Pinto on their beautiful patio, then tried ice skating. Seeing Ben’s face as he glided across that ice was absolutely priceless. The kids all fell in love with ice skating, and Ben was excited to hear about some skaters who are visually impaired. No matter what happens with his eyes, Ben’s going to keep skating.

Just before sunset it was time to head up to the tram (longest in the world!) to get a view of the city. Did I mention I’m terrified of heights? Yep. So for me going up on this thing was a nail biting, anxiety provoking experience and I told Ben he better feel loved! ๐Ÿ™‚ But the sunset was spectacular, bright and purple and orange and we all were in awe.

Safe to say that the city of Albuquerque made our entire family feel so very loved. Thank you for this beautiful experience!

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Alice Givens Jones Foundation Scholarship Luncheon

There’s a young painter here in Denton named John Bramblitt. He’s really good, especially when you learn he’s completely blind and he paints everything from touch and memory. He was also the keynote speaker for the Alice Givens Jones Foundation Scholarship Luncheon this last Saturday.

A little background first: The Alice Givens Jones Foundation is a local charity organization set up to help out legally blind students with some of their expenses for college. Please go to their website and learn more about them. They’re a pretty neat organization. Go ahead. I’ll wait.

One of the directors of the organization, in fact the daughter of the organization’s namesake, saw that Ben wanted to meet John Bramblitt, so they invited us to their Scholarship Luncheon.

We arrive at the Crescent Court in Dallas and the boys are immediately impressed with their three-story fountain in the center of the courtyard.The fountain

We made our way to the right place and discovered we were to be seated with the scholars themselves front and center in the room. In addition to Bennett and his big brother, we were seated with five charming women at various points in their education. One of them even was honored to visit President Obama to share some of her work in stem cell research for blindness!

The dinner itself was incredible. Southwest cilantro Ceasar salad followed by the best lasagna I’ve ever had. Here’s the obligatory food picture. IMG_6652

Conversation was lovely, too. At first, the boys had a small problem relating to the conversational issues relevant to undergraduates, but C turned the conversation to their favorite books, and everything flowed smoothly from there.

The main event was a talk from John Bramblitt. He’s a delightful and funny man. He wasn’t born blind, but lost his sight due to epilepsy. His story is incredible. You should read it yourself. IMG_6655

Toward the end of his talk, John invited everyone in the room to visit him in his studio, and he’d be happy to teach us all to paint without sight. After the program, I introduced Ben and myself to John and asked him if his invitation was serious. He said it was. We’ll be visiting him when we can.

While we were there ostensibly to meet John, being in that room around so many intelligent and capable individuals with sight issues was truly inspirational. I may have got a little more significance from the event than the boys, but the look on Bennett’s face when he realized he was speaking to the scholarship winners, college-bound, and they were blind, was priceless. This isn’t that picture, but it’s still a pretty good shot. IMG_6654

Our thanks to Pamela Ajayi and everyone at the Alice Givens Jones Foundation for allowing us to attend. Pam, your kindness expanded the horizons of our little guy more than you know.

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SPORTS!

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I had the opportunity to take Ben to not one but two professional sports events in Dallas.

IMG_5387First up, he received a pair of tickets to game 4 of the 2014 NBA Playoffs featuring the Dallas Mavericks vs the San Antonio Spurs. Short story, the Mavs squeaked out a win in the last minutes of the game forcing the series to go into game 5 to the Spurs home team advantage. Exciting game!

But the real fun was soaking in the sights and sounds of a Ben’s first professional sporting event. Seriously, what sounds! Every chair had a noisemaker of some sort in it, and though it was Ben’s first game and he didn’t know any differently, this was the rowdiest, most rambunctious sporting event I’ve ever attended. Ben loved it!

This was also the day after our first story aired on WFAA Channel 8, so Ben was being recognized by many many kind people offering Ben some of the freebies that were in the seats for the fans. The nice woman at the concession stand even gave Ben a jumbo Slurpee on the house. The Mavs made a new young fan that day. He still wears his freebie fan shirt around. It’s a lovely shade of blue.

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A couple days after that, a friend of mine who works with the PR department for Dallas’ local pro soccer team, FC Dallas, got us into a game vs the NY Red Bulls. Besides Ben, I also took Mo and C to the game. I think they all especially enjoyed this one: they all played in a junior soccer league in Denton for a couple of seasons. While we don’t watch many pro sports in our house, they actually played soccer so they understood more of what was going on down on the field.

IMG_5398The real fun was up in the stands, though. For every bit as rowdy as the Mavs fans were, the soccer fans were doubly passionate about their home team. After a couple of legitimately bad calls by the ref against FC Dallas, the kids were introduced to some new words prompted by the FC Dallas spirit squad and chanted through the stadium.

The home team lost that day from a last-minute penalty kick, but the kids got a 99ยข refill with the jumbo Slurpee cup Ben got at the Mavs game, and everyone had a lovely time.

Our many thanks to the Dallas Mavericks and FC Dallas support staff who heard about Ben’s story and worked to give him some wonderfully fun memories.

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Lone Star Park – Horses!

Ben’s wish list included the hope of seeing a variety of animals and he’s been very fortunate to see many recently (the zoo, Sharkarosa, etc.) However, I don’t know if any were as beautiful as the race horses we saw at Lone Star Park in Grand Prairie. They invited us to come out and see the race horses (and enjoy a delicious buffet!) and it was such a fun day!!

We pulled up front and Stacey met us and lead us inside, up the elevator and into this gorgeous dining area overlooking the track. Just the view was worth visiting there! We had tables reserved right up against the window (as well as a tv so Ben could see close up everything that was happening.) It even had a sign that said “Ben’s Wish” and when we looked into the program Stacey showed us race four – it was named Ben’s Wish!! And we were going to go down to the track to get a photo of that race with the winner!

The only hiccup being Ben’s little sister thought this meant she could RIDE in the race, and her three year old self was not amused when I told her she couldn’t actually ride the “pony” she picked.

After reminding the kids that they must eat something healthy before hitting the dessert, cake, and ice cream bars we let them loose on the buffet. It was delicious – C loved the enchiladas, B loved the salmon, Kit and I both thought the build your own pasta bar was fantastic. (We went back for seconds – so, so good.) There was Blue Bell ice cream with toppings, a huge variety of cakes and pies, cookies, strawberries, trifle, cobblers, chocolate sauce… oh, and a really great salad bar but the dessert kept distracting me. ๐Ÿ™‚

Then of course there were the horses! We came downstairs for the third race and watched it from the railing and it was breathtaking, seeing those powerful horses racing past. Even just walking down the path where the horses are lead towards the railing – all of it was stunning. The kids were enthralled. (Though admittedly they picked which one they wanted to win based on which they thought was prettiest, but we weren’t making any bets so that’s okay.) The winning horse came in and was RIGHT THERE, we could reach out and touch it, but they remembered I told them NO reaching towards the horses and they behaved. ๐Ÿ™‚ We headed back inside for some water then came out for race four, and just before it started Stacey introduced us to Scott, the president of the park. He asked the kids if they would be interested in watching the next race (Ben’s Wish) from INSIDE the track. Um, yes??!!! So off we walked on the track, crossed over and got inside the track (and let the kids play inside the starting gate, which I told them was not a bad idea to have at home to contain them.) They hopped out, the horses were brought in and we stood feet away as they launched out of the gate.

I told Ben that just for a second he should close his eyes and remember the sound of the horses as they raced past. It was something I will never forget, and I hope he always remembers. While many of these experiences are focused on the visual, we want Ben to use ALL of his senses to collect these memories. When he remembers these races someday I want him to “hear” the sound of those beautiful animals and think of the smell (ha!) and the touch and all of the ways he was able to experience it – beyond the visual.

Once they’re off they pull the gate out of the way and we needed to cross back outside of the track before they came around. It was so neat, and Ben had the best smile on his face.

We saw them cross the finish line and then got a photo with the winner and the kids were able to touch the winner! (Me, too, I wasn’t about to miss that chance.) Then we went back inside to enjoy the buffet again and eat way too much ice cream. J, our five year old, couldn’t decide if he wanted a sundae or cone – they gave him both. He wisely admitted later that he probably should not have eaten three servings of ice cream. ๐Ÿ™‚

Oh, and I was too slow and missed a piece of pecan pie at the dessert bar, but when I got back to our table Stacey was standing there with the chef and a beautifully plated piece of pecan pie he had brought out for me. It was so, so kind (and so YUMMY!)

When we were back inside for the following races I had Ben do the same thing – I told him to close his eyes just for as second as the horses were getting close to the finish and listen, to the cheering crowd and laughs and excitement and to remember this moment and then open his eyes and watch the horses dash across the finish line. Judging by the grin on his face I think it’s cemented in his memory as a magical moment. ๐Ÿ™‚

To everyone who made this possible and especially Stacey for reaching out to us and coordinating it – thank you.

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