ThadenPierce

Chocolate Chip Cookies, Brit-Tex Version

I have an american version of this recipe I had to modify when I realized our measuring cups were all in ml which I think is the same as grams? So change as needed to correct for my mistakes.

100 grams caster sugar
300 grams brown sugar
200 grams of softened butter (I do a bit less)

Cream all together and whip for five minutes, until light and fluffy then stir in & continue beating with:

2 eggs
15 ml vanilla

In another bowl combine:

200 grams porridge oats
500 grams white flour
5-10 ml bicarbonate of soda (I did a heaping 5 ml spoon)
5 ml salt

Stir dry ingredients into wet, then mix in:

300 grams chocolate chips. More or less, I won’t judge. 😉 If you cannot find chocolate chips (we got them at Costco) then get a couple 100 gram bars of chocolate and chop those up instead.

Scoop onto a silicone baking mat/sprayed cookie sheet and bake at I think mark 4 on a gas oven… we can fit nine cookies per square baking pan, though we are use to doing a dozen on our rectangle pan in our previously big american oven but that’s okay! We’re adapting. Kit says it took 11 minutes at mark 4. Verdict is – they are DELICIOUS! Warm and gooey and the measurements worked out beautifully. Hooray!

Pay it Forward Links

Ben’s chosen some organizations he wanted to support and to pay it forward after all the care he received with his wish list. Here are a couple of the places he’s worked with donating to:

Our Daily Bread is a local program providing meals and other resources to members of our community. We love that it’s local and the kids have been able to bring in canned goods, produce from the garden, and toiletries they collected on some of the trips. For Ben’s birthday this year he asked guests to bring donations for Our Daily Bread instead of presents and then we went over to drop them off in person, and they were so sweet and welcoming.

Lighthouse for the Blind of Fort Worth we learned about as they provided Ben’s cane training, along with information and support for our family. This is something they offer free of charge, and it’s invaluable for anyone with vision challenges to have them as a resource. At a holiday gathering there we were told they had been receiving donations from people who had heard about Ben’s story and wanted to help others – that made Ben SO happy, he teared up. There may be a similar program in your area that could benefit from your contribution!

We hope that gives you some ideas, and there are countless other programs out there making a difference in people’s lives – thank YOU for helping make that difference!!

Dream Come True – Paris!

Remember that dream I had a year ago?

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. 🙂 Continue reading “Because Miracles Happen”

THANK YOU!

Ben’s story by Janet St. James aired on Wednesday at 10pm. There are been several ads running for the story on the radio and television so we were getting messages all day long from family and friends hearing it! Then the emails began… and they have not stopped. 🙂

This is the original video.

When we woke up we were greeted by an inbox flooded with emails, Ben’s Wish List page on Facebook had gone from a hundred or so Likes to several hundred (and now thousands), and there were a ton of personal messages for us as well. The entire day we were getting more, and the ones that made me laugh were friends and family literally across the nation saying, “I just saw you on the front page of CNN!” or “Why are you on the front of USA Today?” or “You’re on the news in California!” It was spreading near and far!

This is the follow up when Janet brought us into the studios to share what the reaction had been.

SO, we’ve not caught up! We woke up Thursday to such a tidal wave of support that while we’ve done our best to read every single email, we’ve not been able to answer them all yet! It may take awhile, and we really apologize. I like to have messages answered quickly so knowing I cannot possibly respond to everyone right away makes me antsy. But for some reason these six kids of mine still want me to feed them and play with them and thus, the emails and messages wait. 😉

Please know in the meantime that we have treasured every single one of you taking the time to write and share your support, suggestions, inspiration, and generosity. Words are failing us because while we knew we lived in a great community, while we treasure our fantastic village of people, we hadn’t anticipated Ben’s story being shared so far and so wide. (The messages from abroad began Friday morning!) We’ve been warned, multiple times, that we should avoid reading any comments on websites with our story because often there are internet trolls being hurtful. While I’ve not even seen all the websites on which the story was shared, the comments I have read are all kind and loving and incredible.

We think our kids are pretty fantastic, of course. We believe Ben’s story is miraculous, but we had never, ever imagined that sharing his wish list would lead to this.

There are amazing things in the works and we will be sharing them along the way. I promise we WILL catch up with the inbox and in the meantime, if you have sent something and we have not responded yet but you feel it’s time sensitive then PLEASE feel free to send it again to heidi@thadenpierce.org as that’s the best way to catch me.

Also, we will be updating Ben’s Wish List as they are fulfilled. For some of his wishes we’ve been sent a couple opportunities and we’re trying to make sure that everyone is told THANK YOU, but that we’re not accidentally duplicating efforts when everyone is being so generous. I apologize that the page is not updated yet – until I finish the inbox I’m not sure what the status is for some things. If you’ve sent a message to help with one of Ben’s wishes please know how grateful we are, and we promise we will respond ASAP!

Water Tower Tour!

I admit that touring a water tower struck me as possibly the weirdest of Ben’s wishes. A water tower?? Huh?? But apparently to a nine year old that was fascinating, we just had no idea how we could make that happen. Water towers tend to be surrounded by locked fences, and we weren’t sure that they routinely host field trips! So you can imagine our surprise when we were contacted by Jennifer at the Mustang Special Utility District and she was offering Ben a tour!

We drove out one afternoon to check out the office and the kids saw how the water levels are reported for each tower to the central office. They had lots of questions and were fascinated by the map. I think J, our five year old, wins for most entertaining inquiries! They also gave the kids some really fun goodies – I snitched one of those flashlights for my doula bag, and the cooler bags and cups are being used constantly. (Who knew utility districts had such fun swag, right?? Frisbies??) Then we drove down the road to the water tower itself – and it was huge, and I tried to NOT think about the fact that we were standing inside a water tower under this massive amount of water. The kids had lots more questions and they thought the echoing tower was way too much fun and Ben learned lots about how it all works.

Jennifer & the Mustang folks had learned about us through the Denton Record Chronicle article in February and they invited the paper to come back out for a follow up story. Though I admit we were really surprised to see the kids made the front page again! Both stories were really sweet & well done and we’re always happy to share Ben’s amazing story. He’s a pretty fantastic kid, and he’s grateful that so many people have been helping make his wishes come true – however funny and random they may be! Thank you to John and David for the great article and you can read it here, see some more photos, and read J’s funny questions about the towers. Thank you to Jennifer for providing all of these photos in the gallery, and thank you to all the folks at Mustang SUD!

It was really tall!

Now she’s staring up INSIDE the tower.

They were talking to each other through the long tubes.

Excited J.

Asking lots of questions.

Miss Livy being her usually cute self.

He was so excited by the experience!

Dreaming of Paris

I don’t usually remember my dreams, but last month I woke up with one so vivid it still feels real – and I still tear up when I remember it.

I was sitting on the steps of Sacré-Cœur with Ben and we were eating chocolate croissants and the sun was low enough in the sky that it was the golden hour, when everything seems magical and glowing. As I looked at him I spread my arm out across the city and said, “Ben, this is Paris!” He had that smile on his face, the one that’s ear to ear – when he’s so excited he’s practically quivering with happiness. In my dream I cried, because I was so happy that he could see Paris, that he could fall in love with this beautiful place. He could see it.

When I woke up I told Kit about it, and I said, “We’re taking them to Paris.” I don’t know how or when, but we are going to Paris and I’m going to sit on those steps and we’re going to eat croissants and this is going to happen. Just you wait and see… 🙂

Update here.

The Other Kidlets

To answer some questions and concerns we’ve been asked about regarding the other kids, seeing as we got an iPad for one child and not the other five.

We have six kids. With very few exceptions, it’s rare that all of the kids get all the same treats. They are use to this, and they’re (usually) happy for each other even if they don’t receive the same things. Preparation for life! Plus they are all fantastic (with the exception of the three year old dictator) about sharing – they are incredibly generous and big hearted kids.

Our online life currently has lots of Ben related posts, which makes it look like he’s constantly the center of attention. There’s been a lot going on with him lately and thus the skewed view of things. In real life Ben’s #3 out of six kids – he’s just one of the gang. Each of the kids has times when they are singled out and get some extra special attention, but I really do think it all balances out. The older kids let us know when they could use some extra one-on-one time from a parent, the little kids make it known clearly on a daily basis when they want attention! And we work hard to make sure that they do get all their needs – and some of their wants – all met and they feel loved in whatever their love language may be.

Oh, and none of the kids are online so they aren’t seeing all these posts about Ben anyway! They just know that Ben has a vision challenge and we’re all working through how to best support him.

Because Ben’s vision news is recent he is getting a lot of attention and support right now. He’s created his wish list of trips and experiences he wants, but these are activities that ALL of the kids can participate in – not just Ben. We didn’t take only Ben to Harry Potter world or the Apple store, he’ll not be the only kid going when we visit the mountains or the beach or science museum. These trips are fantastic opportunities for all of the kids and they’re enjoying them a lot.

We’ve asked the other kids to tell us about THEIR wish list – where they they would like to go, what they want to try. C wants to ice skate, Mo and E want to visit a restaurant kitchen (they love cooking.) We’ll be working on the sibling wish list. Everyone involved in making Ben’s wishes come true has also gone out of their way to make ALL the kids feel special. That fills me with even more gratitude, that they know siblings of kids with special needs may often have to sacrifice a lot.

Also – Ben has a special need, but we have three other kids all receiving various types of therapy and services with their own special needs and challenges. In fact our littlest, Livy, is the only child who has NOT received therapy for some type of concern! Ben’s is an obvious physical challenge and we’ve asked his permission and he’s comfortable with us sharing his story. The other kids’ challenges are less visible and some have asked us to NOT discuss them online at all. We’re respecting their privacy. On any given day one child or another may need some extra attention, and we rotate through which kid is most worrying us day to day. 🙂

Because really, we’ve got a whole list of diagnosis that we’ve unfortunately had to face. We don’t want any of the kids to ever feel labeled or limited by these disabilities. I’m happy to talk with people about these in real life and answer questions, we’re just not disclosing them widely.

Ben is our super hero and we’re so proud of how he’s eager to tackle any hurdle and learn all he can. But we’re equally proud of our other kids – some are facing some really, really hard and overwhelming special needs that have caused a lot of tears for them and for us. One in particular these days is struggling hard and we’re constantly seeking inspiration for how to better help that child, too. Because of the circumstances that little one has asked us to not disclose any details at this point in time, though someday hopefully we can share that story, too.

Anyway, rest assured that Ben’s just one of the gang in real life and all of the children are equally adored and/or neglected depending on how crazy the day is going!

Apple!!

The title of this post is because when we walked up that’s what Ben yelled – APPLE! Safe to say he’s a fan.

A bit of background for those not familiar with his story – you can read a snippet here and see some photos of Ben just after he was born and in the NICU. Eager to join the party, Ben arrived at just 23 weeks gestation and weighed only 22 ounces (630 grams.) He developed an eye condition because of his early entrance which has caused him to be visually impaired. Thankfully he can still see relatively well from one eye, enough that he can read print up close and uses a magnifier. Unfortunately his vision will continue to deteriorate over time and there’s no way to know how much vision he may maintain.

Not that it slows him down at all!

We were encouraged to give him lots of visual memories before he loses more eyesight so he made up a wish list. We were amused he asked to go see the Apple Store! We told him we weren’t sure when we could make that happen but we would try someday. One morning we woke them up early to “run an errand” and this is what happened next… (more background story is included below the gallery.)

B realizes where we are.

The grin!!

Everyone was clapping and we had to explain it was for him, and he could walk in!

Being welcomed to the store.

Bashfully walking in as people are clapping and cheering and greeting him by name!

The kids saw iPads! On a kid sized table! They could play with!!!

Pretty much they sat there the entire time discovering new games they wanted.

A special mini table at the genius bar.

He’s practicing being a genius. 🙂

He was telling me he wanted to play on an iPad before we left the store like the other kids were doing.

Explaining that this iPad he just saw in back was actually…

For him!

Shock. He just sat there in shock as the news sunk in.

More shock.

Explaining he’s allowed to open this.

Emy hearing the news and hugging me because she’s so excited for Ben.

I think it’s becoming more real.

It’s real!!

The expression…

He approves!

Ben had just announced this is going on his list for best day EVER!!!

From almost the time Ben could walk he’s been obsessed with our various Apple devices. He would sneak off with them as a tiny toddler and drop them or do other destructive things. He sucked on a few power cords as a baby and shorted them out. He had a super power of finding them no matter how far we hid/buried them away behind the couch. It got to the point that we were visiting the Apple store so often when we walked in they would greet him by name and say, “Hi, Bennett! What did you break??”

Thankfully he outgrew this habit and we’ve not been to the store in years since Apple stuff really is durable. Funny that the other five kids haven’t been able to do any damage when he did so much – we joke Ben was doing crash testing on it, research for his future career at Apple building gear you can’t destroy. I want him to work on shatter proof screens since I broke one of those.

When I was on bedrest a few years back with our youngest child the older ones had a field trip to the Apple store. Bedrest meant we couldn’t all go and sad Ben had to stay home with me. During the trip the kids composed songs with Garage Band and got yellow t-shirts – Ben’s favorite color. This left quite an impression on Ben and when asking about his wish list for trips and places to see he said the Apple store! To get a yellow shirt and ask the Geniuses questions and play on an iPad! We thought that was an easy request to fulfill, though we weren’t sure if we can manage the t-shirts since we’re not an official field trip.

We had mentioned his wish on Facebook because we thought it was so funny and to our surprise learned – wait, apparently we know some people who have Apple connections! They contacted us and asked some questions and started making some plans and were absolutely fantastic every step of the way. While we were hoping to just visit the store and let Ben play at the kid table, the Apple folks had so much more in mind.

Over the last few years Ben’s various vision team members have talked about how wonderful the iPad is as an assistive device. Kit researched and learned more about the amazing technology it has to help people with visual impairments & the long list of apps great for kids with visual disabilities. Even built in features like Siri can make a significant difference in the day to day lives of someone with a vision challenge. We just didn’t know how to make that happen with the budget, so it was something we kept in the back of our minds but hadn’t pursued. Once again little miracles started to fall into place with offers of help, surprises here and there, and so much support and love from friends and family. Suddenly the dream of an iPad for Ben was becoming a reality!!

One night Ben came into my room after bedtime and asked if I could learn more about taking a field trip. We looked online and I told him the field trips aren’t being planned until spring but maybe we could go then? I also told him they don’t sell those special yellow shirts, those are just for field trip kids. We talked about making it happen someday and when he saw the picture of the store online he said, “Wow… awesome!” So he kept hoping to see Apple but knew he needed to patiently wait.

Meanwhile we plotted and planned and this morning we told the kids we needed to run some errands and meet Shannon to return some things to her. Shannon happens to be a dear friend and photographer and she had so sweetly offered to be there to document this experience. There was much texting and coordinating going on as we got up early (before the store opens to the public) and headed out. The kids knew we had a surprise for them but we needed to meet our friend at the mall first. As we walked up to find her what did we happen to see?

The Apple Store.

And what was happening there? Rows of people all dressed in red clapping and cheering and welcoming our family. As you can see in the photos, Ben’s face just LIT UP when he recognized the store. When he realized he was allowed to go inside??? He was stunned. When they greeted him by name? SHOCK! He got a bit bashful as he passed so many people cheering for him. (He later said he felt like a celebrity and wanted to know how they knew his name???)

They did a mini tour & he was allowed to stand behind the Genius bar, which was so impressive to him. Then he asked me if he could play on one of the iPads at the little table like the kids were doing before we left. We sat down and explained not only could he play on one – but the one they had just shown him was FOR HIM. People who loved him had helped make it possible for him to have an iPad of his very own.

Shock. He just sat there staring at the box straight faced. It was probably a good minute before he blinked and asked, “For me?” Yes, I explained – for you to play on not just now but to KEEP. More shock.

The reality set in when they handed him the box to open and he was all smiles. He lifted it out of the box and said, “I get a charger??” Yes, an iPad AND a charger! 🙂 (He’s so easily impressed, I love it.)

Then they spent time talking with him about the assistive technology and zoom and reading books on it and Garage Band and games and Siri. We need to go back for sure to learn more about all of it, Kit said there’s tons we need to explore for Ben. Then I got lots and lots of tight squeeze bear hugs as the reality sunk in for Ben – he got to visit Apple! And tour it! And see a computer and the genius bar and talk to so many sweet people and he got an iPad!! And a t-shirt! Then he told me, as he hugged me tight again, “This goes on my list of best days ever!!”

So to everyone who helped make this possible – thank you from the bottom of our hearts. You made his dream come true, and I know that every single day of his life will be enriched by having this as a resource and tool for independence. Okay, and he’ll just have fun with it, too!

P.S. We’ve been asked how the other kids are handling this situation with B’s vision loss and how they reacted to seeing B get something this big. You can read their responses here.

P.P.S. For our new visitors coming through links to this post – WELCOME! Ben’s been reading your comments and loving every single one. He’s grinning ear to ear knowing that his story is helping other people feel happy. Thanks for your kind words and support! If you have any questions please feel free to contact us – we can be reached at heidi@thadenpierce.org.

Want to see a 22 ounce baby?

We’re often told that it’s hard for people to imagine how tiny a baby is at 1 pound and 6 ounces. We saw him daily and it’s still hard for us to wrap our minds around!

To summarize his story – B was born at just under 23 weeks gestation and was 12 1/4″ long. He was in the NICU for 109 days, came home on oxygen then became sick and went back on the vent in the PICU for 13 days. He had many of the complications associated with prematurity – pneumonia & other infections, lung disease, PDA and ROP surgery, hernia repair, feeding issues, developmental issues with gross, fine motor and speech… he has fought so hard to overcome these challenges and amaze us all. His lingering challenge has been his vision loss, but we know he’ll continue to surprise us with his persistence and creativity as he tackles any hurdle.