Category: Kids

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!

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.

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.

(If you’ve NOT read Harry Potter then a brief explanation – Harry was the target of the evil bad guy but somehow managed to withstand the death curse thrown at him despite many others being killed by said bad guy. He became know as “The Boy Who Lived.”)

And this is repeat info for some of you but for those of you not familiar with Ben’s story – some background before the punchline. Apologies in advance – I censored a bit, but Ben’s story is not for the faint hearted.  I talk about life and death and babies and lots of blood, so please read with caution.

I spent three months of my pregnancy being told I was going to lose Bennett. (In very kind and gentle terms, for the most part.) At 10 weeks we discovered I was miscarrying (again, we had just had our second miscarriage in July then got pregnant with Ben in August.) I was put on bedrest and I was already on progesterone supplements and we were sent to see the OB back up for my midwife then he sent us to the two perinatologists/high risk specialists. We also had a few other ER trips in there for complications (like, oh, my water breaking at 22 weeks) during which time poor freaked out ER doctors and OBs on call at the nearest hospital had to see our ultrasound and tell us we were losing our baby. (We reassured them we had been hearing that for months.) The perinatologist when he first saw my ultrasound called in his partner so they could be check it out – which is NOT comforting for a pregnant mom, let me tell you. They said it was the biggest subchorionic hematoma they had seen in the last decade of their practice. Woo-hoo! We aim to impress. Wiki Link (Essentially my placenta was not cooperating and instead of nourishing Ben it decided to partially detach and just bleed into my uterus, surrounding the amniotic sac. Not cool.) Continue reading “The Boy Who Lived”