Boats, Boats, Boats

Teddy loves boats. Like most things, this is both a good and a bad thing. It brings him great joy when he's able to ride in boats, and he enjoys seeing them and it leads to fixation and frustration at times when the elusive boats are off limits to him. 

Such was the case a couple years ago when our neighbors got a pontoon boat that had to be stored in their driveway for a month or two before they could get a dock slip. Teddy was OBSESSED. He woke up early, ran downstairs and tried to escape to the boat. He'd sit and stare out the window for hours at the boat. He didn't want to go to bed because there was a boat outside. He started clapping the minute we turned on our road because his boat was in their driveway. 

Needless to say, their boat was the bane of our existence for those weeks. And since we're friends with them, they knew it and heard many a joking comment about it (except we really weren't joking every time). Since then, the boat has only been at their house periodically, and Teddy gets just as excited. It's more manageable when it's a couple hours or a day, not a constant torture.

Our neighbors asked several times last year if we were home to go for a boat ride, but our busy lives never connected. So it remained on my goal board for this year, and Teddy's dreams came true the other week. 

Pure joy and giggles for most of the ride!

We're heading into fall here in Wisconsin, which means you never know exactly what the weather will feel like because 60 degrees could mean shorts and a tank top or it could mean long pants and a sweatshirt, all dependent upon the wind, sun and clouds. Our boating day happened to be the sweatshirt side of life, with light sprinkles of rain when we started. 

Thankfully, that didn't deter our neighbors because it certainly didn't deter Teddy's joy. As our friend said, "Teddy is certainly the most excited person to ever be on our boat." His sheer love of the moment is contagious, which meant we all had a great time puttering out on Lake Winnebago a bit and checking out the river to Lake Butte Des Mort. Teddy and I often run and walk along the river because it's great boat watching to entertain Teddy, but we've never been on the water. So I loved seeing everything from the water, especially our Oshkosh murals. 

Captain Teddy even got a turn at the helm.

We're so grateful to have such great neighbors ... in so many more ways than this. But to take several hours out of your day on a Packers Sunday in kind of lackluster weather to bring pure joy to Teddy is pretty darn cool.

Teddy with his favorite of our neighbors ... at least at that moment!

Camping in a Tiny House

One of our favorite things to do as a couple was camping when we first got married. We camped in a tent, dreamed of becoming campground hosts when we retired, and loved exploring our favorite places and new places with our camping gear. When we added kids to the mix, we were excited to introduce them to one of our favorite things and spent the first several years with kids dragging them across the country camping most of the time, with an occasional hotel stay to shower and do laundry on our 2- to 3-week adventures.

As Teddy got older and bigger, it became harder and harder to camp. His ability to sleep anywhere aside from our home (and even at our home) was a challenge, often up until midnight with mornings as early as 4 ... or even one horrible 2:30 a.m. wakeup for the day. The feasibility of putting all 4 of us in a tent, which Teddy could escape, began to sound like a form of torture rather than fun. 

That's why we ended up with our land to give us a place to explore the outdoors, spent time doing things we love outside and have a consistent routine and place to sleep where Teddy could get comfortable. I couldn't tell you the last time we actually camped with the boys ... possibly 2017? 

But this week we ventured back to one of our early marriage favorites, and one of Dave's childhood favorites, to visit Porcupine Mountains State Park in Michigan. We rented a tiny house cabin right on Lake Superior in the campground for 2 nights. It's an adorable, fully accessible cabin that made it possible for us to enjoy "camping" again. 

Our tiny house had 2 full-size beds, a perfect spot for a family of 4.

Now, that's not to say it was easy because rarely are things easy with Teddy. We still had a rough bedtime the first night, and he kindly woke us up for the sunrise each day (Dave got one morning, and I got the other.) But he absolutely adored the tiny house, so much so that he yelled at us for 30 minutes when we left for the day to go exploring. He scampered into the top bunk and holed up there with AJ in blankets and pillows, giggling nonstop. 

Dave kindly helped AJ as his suspenders while AJ pushed Teddy uphill to the observation tower.

He also protested several of our planned "hikes" if you can call the less than a mile trails that, with more flops and drops than usual. But despite that, we managed to see waterfalls, play in Lake Superior and do 2 family hikes to Nonesuch Mine and to the observation tower. It's really neat to see Teddy embrace being a kid at the beach, scampering up and down the shoreline, digging in the sand and running full force into the water, not realizing Lake Superior tends to be a bit chilly. 

Lake Superior is a great lake, that's for sure!

All in all, I'm grateful for this beautiful accessible cabin. I'm grateful we got to revisit places we love. I'm grateful for the family time and the memories. And, I'm grateful for our own bed when we returned. 

Spring Break 2026

Vacation in 2018 nearly destroyed us. It (and COVID) led to some pretty big changes in terms of our land and how we vacationed. The last 3 vacations we've taken have included one of our sitters (and my dad for one trip, too) because we learned that more hands make vacations a bit easier. 

This year for spring break, though, we didn't have the option of taking a big along with us. So, we ventured out for a jam-packed road trip with just the 4 of us, heading to the East Coast and taking in as many sights and experiences (and donuts and ice creams) as we could!

The highlights of vacation in terms of sights seen included:

• 3 National Seashores (Cape Lookout (my favorite!), Cape Hatteras & Assateague)
• 1 National Battlefield (Moore's Creek with the slogan of "For King George & Broadswords!")
• 1 National Historic Site (Harriet Tubman Underground Railroad)
• 1 National Memorial (Wright Brothers at Kittyhawk)
• 4 National Parks (Shenandoah, New River Gorge, Congaree & Smokey Mountains)
• 3 hours in Washington D.C. with cherry blossoms everywhere exploring:
• Jefferson Memorial
• Lincoln Memorial
• WWII Memorial
• Korean Memorial
• Vietnam Memorial
• Martin Luther King, Jr. Memorial
• Washington Monument

Our favorite moments were our few hours in Washington, D.C. where we absolutely lucked out with a parking spot to walk with hundreds if not thousands of others in the beauty of the snow white cherry blossoms. AJ has never been to D.C., and we've wanted to take him there for years. While this doesn't replace the desire to spend a couple days there exploring all the museums and truly enjoying all the monuments, memorials and history, it was a wonderful opportunity!

The other highlight for our entire family was our trip to Cape Lookout, as we took a boat out to the island to explore for the day. Dave did a phenomenal job planning vacation and had rented us a side by side to drive around the island. It was the perfect way to get to explore the historic village, all the different beaches and the lighthouses. We laughed (and worried a bit) as we got stuck in the sand twice in the first 1/2 mile, but thankfully those were the only times we were stuck. It was a beautiful day, though windy, so we got to dip our toes in the ocean, search for sea shells and enjoy a picnic in short sleeves and sunshine!

Travel with Teddy is still travel with Teddy. As I've told others, we'll have our moments and challenges here at home, and I'd much rather be seeing, exploring and doing than not. So we had a 2 a.m. bedtime the first night and another night with a midnight bedtime because Teddy insisted on sleeping on the couch. That might not sound like a problem, but Teddy is at risk of falling out of bed and eloping or leaving the hotel room, so we always pair him in bed next to an adult for safety. I gave up that night, though, and blocked the door with a laundry basket and just slept lightly to keep an ear for him. 

We also had to do a lot of valet pickups for Teddy, as transitions were tough. He often refused to leave just about anywhere, but he'd go when the vehicle pulled up. The other challenge in the vehicle, which was a challenge, was aggression toward AJ. Teddy decided after the first couple days that he no longer wanted AJ sitting by him, so he was pushing, kicking and hitting at AJ. 

But, we saw progress with restaurants, even without an extra set of hands. Teddy did really well waiting and eating in the restaurants where we ate, which often isn't the case. We also saw progress with hotel rooms, with very minimal attempts to leave the room and much more willingness to just chill with hotel TV. Even bedtime was easier in the sense that it wasn't such a fight with flailing and crying as much as simply not wanting to sleep.

It really was an amazing trip with tons of fun memories for all of us! Here's pictures of some of the fun.

This occupied Teddy for 30-60 minutes. 

Shenandoah was a wee bit foggy.

Teddy still loves viewfinders. We saw a wild horse through it!

Like most boys, Teddy thought the cannon was cool!

Teddy's version of hiking is sprint and stop. Good thing I'm a runner.

The kid who rarely hugs gave Buc-ee a hug.

This boy loves boats!

4 x 4 exploring of Cape Lookout!

This seashore was a wee bit chilly, so they were cuddling for warmth!

Ice Caves - An Adventure!

Eleven years ago, Dave and I had the opportunity to visit the Apostle Island ice caves. It was a whirlwind trip with lots of hiking, stunning scenery and two magical days that we still fondly remember. In fact, just the other month we were talking about how incredible the ice caves were and how unlikely it was that we'd ever see the ice caves again because it takes very specific weather conditions ... so specific that 11 years ago was the last time the ice caves were open.

When I stumbled on the news that the ice caves were planning to open February 16 this year, Dave was at our land with no Internet/cell service. So as he was driving the 3 hours home, I mentioned to him that the ice caves were opening the next day. And, within the next hour, he booked a hotel room, we called the boys in for school on Monday, and we both took a spontaneous day of PTO. I spent the next 2 hours frantically packing all our gear with AJ's help, and we headed out for another 4.5 hours of driving when Dave got home to get to Ashland. On the way, we got to stop for a quick supper with our sister-in-law and two of her kids for a fun break.

Teddy was very excited about this adventure and quite insistent that he wanted to go (as in he tried packing himself in the suitcase). He was excited to go swimming at the hotel pool and especially enjoyed the hot tub, which was necessary as we then had to walk outside to get back to our room. Sleeping in hotel rooms with Teddy is always a gamble, but he settled down by 10 and slept until 5 a.m. In Teddy's world and hotel rooms, that's considered a win..

Plus, we were heading out early to finish driving to the ice caves, so a 5 a.m. wakeup wasn't the worst thing. By 6:30 a.m. I was packing our vehicle and bringing our surprise visitor, my dad, into our hotel room. That's right, when we do crazy adventures, we extend the offer to others. He was crazy enough to get up at 3 a.m. to meet us that morning.

This year was strictly shuttles to the trailhead, so we headed to a shuttle area in hopes of finding a park ranger. When we couldn't find one there, we headed to the trailhead to at minimum drop off Teddy's adaptive wheelchair. Fortunately, the rangers there allowed us to access handicap parking, which was exactly what we needed to make this adventure possible. 

We were able to get all our gear together, carry his chair down to the beach and be the first trekking the mile or so out to the caves. It was so foggy that we were picking our way along without being able to see much ... not that we could enjoy the scenery at the start because it was a slog to push Teddy's chair through the snow on the beach. Fortunately, after about a third of a mile, we found a more packed snowmobile path on the ice, and it was much smoother sailing from there! 

We were still among the first group of people to the ice caves, and they were just as incredible as we remembered! AJ was enamored in taking photographs and just in awe. Teddy would have spent all his time playing in each and every cave if we let him, though he spent most of the time in his chair go see all the splendor with breaks to get out and play. 

Teddy walking under a bridge of ice.

We all made it probably about 2 or more miles out on the ice, and then AJ and I finished the last of the trail as it wasn't compacted enough to manage Teddy's chair. In the time we were gone exploring, Teddy got to enjoy more of the caves and even found a photographer friend for the Milwaukee Journal Sentinel (https://www.jsonline.com/story/news/local/wisconsin/2026/02/17/apostle-islands-ice-caves-closed/88716758007/ He's the 12th image in the gallery.)

It was truly a magical day, honestly a once-in-a-lifetime experience to witness these wonders with my dad and the boys. It's unlikely that even if the caves open again that we'd be able to make the trip and schlep Teddy through the snow, so this was his chance to see and experience them. It was so special to experience the caves with Teddy in a way that we both love ... crawling and sliding and scooting through the ice caves. And it was just as special to trek to the end of the formations with AJ, seeing his awe and love of photographing the beauty. 

AJ got to see a lot of cool formations!

The trek back was a bit tougher as most of our crew was sore and a bit tired, but it was well worth it. And, honestly, I was just so darn glad that we had compacted snow for the entire trek back instead of the loose snow we had on the start of the hike that I was literally jumping for joy. As we were getting off the ice, we had a ranger comment, "That's the best thing I've seen all day!" in reference to Teddy's chair and our ability to bring him to the caves. We tag-teamed getting Teddy and his chair up the stairs. My dad joked his favorite part of the day was the last 2 steps as he helped Dave carry the chair. 

And then we had a 6-hour drive back home. It was worth every bit of the drive, every amount of effort pushing a chair through snow and all the catch up that we have from spontaneously taking this whirlwind adventure. I commented to my friends that it was well worth cancelling life to do this, and then I realized that what we did was far more important than a day of school or a day of work ... it was 32 hours of making core memories, living in the moment and enjoying the wonderous world in which we live with the people we love. 

We're so grateful for the opportunity to do this, especially since the caves were closed again the next day with no certainty as to when they'll reopen. We definitely lucked out with the accessible parking as that made the adventure possible (and so much easier than leaving a chair and backtracking to a shuttle or splitting our group to have some stay with the chair and the rest shuttle). It wasn't easy, but it was absolutely worth it. 

Nature is pretty darn amazing ... and pretty.

Winter Adventures

Its's been a freezing cold winter, and I swear the 10 days have all been sub-zero. We've had school cancelled due to the cold, Teddy home sick 3 days for 2 different illnesses, and 2 planned days off school. So this beautiful poem was still ringing true ...

But today was finally above zero the entire day! So we got plenty of fresh air and getting rid of some of our stir craziness. 

We started the day with Teddy's second skiing lesson! He remembered so much of what he learned last time and was building off that with more work on turns and learning to feel his edges. His instructor Eric was absolutely amazing with him yet again - he's beyond incredible! We also had company, as my dad and aunt drove 2 hours to come watch his lesson, and Dave stopped by on his way to the land. My family really shows up, and it means so much to me (and clearly Teddy!). 

Look at those smiles!

This afternoon we tried something new ... ice skating! And Teddy loved it! We're pretty lucky that we have a little ice skating area at our local park with free skate rentals, so it was an easy way to try something new. We didn't stay on skates super long because he got tired within a half hour (understandable!), but he was wanting to go back again before we even left. So perhaps we'll make our way there again tomorrow afternoon. Ice skating is actually also really good for him to practice for skiing, as it mimics that glide action for moving skis. Plus, so many people are wobbly like baby giraffes on ice skates, so Teddy kind of blends right in with the rest of the folks holding on for dear life.

First time on ice skates, and he loved it!

Days like these remind me why we enjoy living in Wisconsin. Great people, supportive community and fun winter hobbies. 

Then and Now

Know how people recreate childhood pictures as adults? We did a version of that this Christmas, reliving the memories of a Christmas past.

Look at those adorable little kids.

Oddly enough, my dad was more willing to recreate this picture than to wear my Santa shawl as festive outer wear on our bowling outing Christmas day.

We had a bit less real estate to sit this year, for some reason.

Needless to say ... I don't see us being able to do this again. 😄

Adaptive Skiing - An Incredible Success

Last fall, after talking with another special needs' mom about her son's experience with adaptive skiing, I asked Dave what he thought about me signing Teddy up for adaptive skiing. He responded with 2 things:

1. I want nothing to do with it. (This is less about Dave not skiing than about not wanting anything to do with a risky sport that could result in broken bones.)
2. There's someone at my work who does this. Do you want me to get more information from her?

That's about as much of a green light for this project as I'd get, so I ran with it. Kelsey volunteers with SouthEastern Wisconsin Adaptive Ski Progam (SEWASP). She was incredibly helpful, and I worked through the process to sign Teddy up for adaptive skiing. I requested what's called a bi-ski, where Teddy would sit and be skied down the hill by volunteers. This is most similar to his waterskiing experience, and it seemed like the safest, easiest option considering Teddy's intellectual disabilities and the fact that his listening ears are often broken.

However, SEWASP wanted to assess Teddy for stand-up skiing based on his physical capabilities and had an opportunity to partner with a new ski hill that happens to be the closest to our home. That ski hill, Nordic Mountain, is working to fully build out their adaptive skiing lessons into a full program. So Teddy's assessment and lesson would benefit Teddy and serve as a training opportunity for the team at Nordic. 

I'm not going to lie. I was nervous. I don't want Teddy to get injured because that requires a tremendous amount more effort to care for him. I also was concerned about Teddy following directions and being able to do what was expected. And then there's the wildcard with Teddy that some things simply freak the heck out of him, and he shuts down. I thought between skis, magic carpet rides and/or lifts that there was a high risk of him shutting down or getting freaked out.

We did our best to prepare for the day thanks to YouTube. Teddy does really well watching simple videos on YouTube to help prepare for new experiences or things that are harder for him (like the dentist). My dad came over for morale and physical support for the Ted-venture, and we headed to the ski hill this morning, bright and early (with Teddy unnecessarily up for the day at 4:30 a.m.) and chilly (temps at 0 when we started). 

And, my fears were promptly reality as Teddy immediately wanted back in the vehicle and refused to even walk to the buildings to get started. I headed up to tell the team that we were working on convincing him, but he was anxious. They came over, friendly faces and encouraging welcomes. Their approach helped me convince Teddy to go check out the warming yurt at least. We spent the first 30 minutes or so with them assessing Teddy's walking, getting to know him and working our way into ski gear. The level of skill in their assessment, what they see and how it translates to how they'll help him learn to ski is nothing short of amazing. Dave and Terri with SEWASP are experts at what they do (with Kelsey being a great support). The team from Nordic (Kyle and Eric) were eager to learn and also not without experience in working with adaptive skiing. It's exciting to hear about the program they're developing and what is to come in the next year.

As we worked through each step, I made sure to capture pictures because getting ski boots on was a milestone in itself. (Seriously, have you ever tried to walk in ski boots?!?!) We headed outside to practice sliding and introduce the skis themselves. By the time we got to ski boots, Teddy was all ready to go and excited for the process. 

The team started him with a pole for balance, which they quickly transitioned away from to less invasive methods of support. They are intentional about making it a good, safe experience but in encouraging as much independence to build good habits as possible. The amount of analysis, awareness of Teddy's abilities and fatigue levels and potential options to support him with both equipment and technique were amazing to hear and see. 

If you've ever skied, you likely know about pizza and french fries, the American way to teach people how to ski with straight skis and to wedge to slow down. They decided Teddy is not a candidate for pizza because he'll always try to pizza and end up with crossed skis, so the alternative is to focus on learning gradual turns to slow down. They helped model that, physically turning his skis for him to kinesthetically feel the turn and had him working on assisted turning his last couple runs. 

My expectations for today were pretty low and realistic. I didn't know if he'd even make it on the ski hill and had fully expected him to have hands on support and/or be strapped into a harness to support him. They see so much capability in Teddy, not his disability, and helped him successfully ski down the (very tiny) beginner hill partially with no hands-on assistance. The range of techniques they used, the way the instructor Eric "fell" right alongside Teddy and cheered him for doing such a great job falling to make it fun and easy to get back up again (as easy as it is on skis) and the enthusiasm and positivity from the entire team made this morning downright magical. 

It was also clear from the smile on Teddy's face, the way he immediately started heading back to the magic carpet and his frequent asks to go on the chair lift (wish not granted this time) that Teddy loved the experience!

I never would have guessed before I saw it with my own eyes today that Teddy is capable of this. His listening ears were on point, his focus and his effort were all nothing short of amazing. We could see the signs of fatigue, so we called it a day after a little more than 2 hours. As we were getting ready to leave, Teddy was ready to put his ski boots back on and go out on the hill again! Though his body was tired, he still wanted to go. 

I'm so excited to take Teddy back to the ski hill for him to have more lessons and continue this! 

So happy as he finished his first run!

For the life of me, I wish I could share the videos, but I can't get videos to upload lately to my blog. 

Naughty Versus Nice

I swear I was good this year, but apparently I made the naughty list. And somehow, miracle of miracles, Teddy made the nice list?!?!

That must be the case because what else could explain Santa bringing this to our house for Teddy?

Not-so-little drummer boy.

Yep, that's right. Santa brought Teddy a full drum set. 

Santa, aka Dave, saw how darn happy and content Teddy was at Thanksgiving playing the drums at my aunt's house for several hours. We've never really spoiled Teddy for Christmas, and, honestly, he's gotten very small gifts several years because there's been nothing we could think of that he would enjoy much. But Santa made up for that this year. 

Pure joy in the form of non-stop drumming. Don't worry, he took turns and made everyone play the drums. While they've lost a bit of their luster (literally and figuratively) in the past week, they are very much loved by Teddy. We know that every new visitor to our house will be shown the drum set, given a performance and then a lesson in proper drumming according to teacher Teddy. 

Last year felt very much like getting through Christmas was the goal. This year, I think we all felt a bit of joy. 

Holiday Happiness

This year has brought so much more joy than last year, which was, quite simply, hard. It's been so good to enjoy the holiday season with less sadness and tears, to read our story a day until Christmas, celebrate St. Nick's, head to multiple holiday concerts, and decorate with our big kids. 

Yes, AJ is taller than me.

St. Nick brought us ugly Christmas sweaters. The great thing about the boys getting older and bigger is that now I can steal their clothes, so I have even more holiday sweaters to wear! (The downside is I can never find my clothes because they get sorted into their drawers!) St. Nick even brought all our big kids holiday sweaters, which will make for hopefully some fun holiday pictures.

We also continued our 3rd year of Christmas baking and decorating with the big kids. It makes the double batch of peanut butter balls go much faster with more hands, plus Teddy is all in to hang with everyone else. We always have lots of laughter and end up with goodies made for us to enjoy (as much of my baking in December is for the bakery until I get through my last farmer's market). 

Teddy worked on that peanut butter ball for 45 minutes.

It's not the presents or the gifts that matter, but it's the presence. The time spent together with family and friends who become family. The laughter, shared stories and ability to lift each other up. We're so grateful that Teddy's care needs have helped us build this incredible tribe. 

Our cookie and candy crew is all smiles (and aprons)!

Santa & Smiles

Teddy loves trains. Teddy loves Santa. Teddy loves the Santa train we have done the last 3 years. We snag extra brochures, so he can talk about it all year long (because his way of talking usually destroys a brochure after a few days of incessantly showing it to everyone). 

This day trip is always a highlight of our holiday season. It's perfect for our family because it's a bit low-key, not usually jam packed and ends up being a bit more sensory friendly for us. The hour-long train ride includes carolers, official ticket punching and a visit from Santa and Mrs. Claus, along with a treat from their elf helpers. 

Teddy loves the jingle bells of the carolers. And the fact that most of them are teenage girls.

Teddy is drawn to Santa, and he invited Santa to sit next to him. He was also trying his darndest to convince the elf to squeeze into the foot of space between him and Santa, but AJ took one for the team and squished in there. I felt this Santa was extra attentive to Teddy this year, giving him (and AJ) plenty of time before moving down the train.

Teddy was still trying to convince the elf to join him.

AJ had prepared Teddy's talker for him, so Teddy had several buttons he could use to engage with Santa. He told Santa what he wanted for Christmas (twice to make sure he heard him) and told Santa his name, along with sharing that he loves trains. This was the first time Teddy used his talker to talk directly to Santa and, candidly, his first time using his talker in public. 

It had snowed quite a bit the night before, which made the train ride beautiful. It's one of the traditions we have that aligns with many other family traditions. The only difference is our children our older, but Teddy will enjoy the magic of Santa for years and years to come. 

Halloween Hijinks

OK, it's almost a month after Halloween, so I'm playing catch up. But Teddy had 2 monumental things happen for Halloween that I want to share. 

I'll preface this with Halloween is a favorite for Teddy because he loves visiting all the people. In the past, he's viewed this as an acceptable form of breaking and entering, an invitation to explore every open garage door and a chance to go to everyone's house. A few years ago he realized he was holding a bucket of candy, and he loved it even more!

Through the years, there have been a few costumes that have freaked him out, especially AJ's ninja/shadow suit. But in the last 3 years, that handful of costumes has increased, in addition to some decorations freaking him out. It seems like costumes wig him out (no pun intended) because his brain can't reconcile who he knows with what he sees. It's fine if a costume is very similar to regular clothing, but any wigs or blow-up costumes instantly put him on edge. 

This costume challenge was apparent at our neighborhood Halloween party, when Teddy was so freaked out he could barely make it inside the garage and couldn't wait to leave. So Dave hung out with him at home because he couldn't handle it (Teddy, not Dave). That made me a bit nervous for the big plans Teddy had for Halloween, but he did really well with both.

The first was the school Halloween dance. There are several school dances each year, and AJ has attended all of them to work at them for student council. Teddy had attended none, even though he loves people, music, dancing and food ... all the thing the dance includes. So we had asked what it would take for Teddy to participate in the dance this year, as he'd need support and supervision. His team worked it out, so he was able to attend the dance and did great! He only needed a short sensory break to reset, and he was back in the chaos and loving it! We're excited for other dances, especially as they should be easier without any costumes involved.

Trick-or-treating with his bestie! 

The other was Teddy went trick-or-treating with his best friend. While he's been trick-or-treating with AJ's friend group, who certainly included him, and with our family friends, this was his first time with a friend of his own. The two of them had a great time, despite Teddy being freaked out a bit by his friend's costume. His friend was great about encouraging Teddy and asking for candy for him at the few houses that were way too scary for Ted to venture to the door. It was really a neat experience, and it continues my love of Halloween for Teddy!

Ducks

I'd like to submit photographic evidence that my ducks were in a row. One time. At least for a bit.

That's me and 6 ducks in a row!

This was made possible in part by our Huckleberry Hiker, which allows us to hike with Teddy (down a rocky, steep, trail and through river crossings, as was the case with this hiker). It helps when the most unpredictable duck is strapped quite literally into a chariot that I'm pulling. But still, it counts as ducks in a row!

Family Photos

Last weekend we spent the weekend at our land with all our big kids, otherwise known as the Bigs or our adopted children. These incredible young adults aren't really our children, nor are they really technically adopted in the legal sense, but they are indeed our big kids ... an extension of our family.

Teddy is the catalyst for all these relationships, as most of our Bigs are caregivers (past or present) for Teddy. Throw in a few COVID bubbles, friendships fostered among the Bigs, and somehow we're all family. We now have 3 adopted daughters and 1 adopted son (who happens to be the biological brother of one of our daughters, so we're treated to some authentic sibling bickering, too, at times!). Add one long-term boyfriend to the mix, and we had 5 extra humans at our land last weekend, all of whom both our boys adore. 

This makes my heart so darn happy. They fill spaces in our lives that we didn't know were lacking. They choose to spend time with us, and they genuinely seem to enjoy hanging out with us. Plus, we're past all that teenage angst, drama and hormones with the Bigs. 

So while you might expect our family photo to look like this:

The reality is the one that is more accurate and complete is this:

S'mores

Teddy has never liked s'mores. He has attempted them and handed them back to us, made faces and refused them. 

So, we've adapted and given him deconstructed s'mores minus the marshmallows, which were clearly the culprit because the kid devours chocolate, graham crackers and peanut butter. (Hey, peanut butter is a s'more staple in our household.)

It's not that he's entirely against marshmallows. He's eaten them on occasion plain, and he definitely loves rice crispy bars. I think it's a texture thing with melty marshmallow, so we've just adapted and it's worked just fine ...

... until the other weekend when he kept trying to make a s'more. Since Teddy doesn't talk, there's always a little bit of trying to understand if our interpretation is correct. At first I thought he wanted a deconstructed s'more, but he clearly wanted to cook a marshmallow. So we did that and made a s'more. 

And he shocked me by eating it. (He still kept holding out his hand to have me wipe off the extra marshmallow stuck to him, so I think there's still a texture thing he's not completely loving.) Then he proceeded to make a second s'more and eat it.

His first-ever s'more that he actually ate!

He repeated this the following weekend, so it's safe to say he now enjoys s'mores. 

We joked it was peer pressure because we had a friend along the first weekend devouring s'mores. It's neat, though, to see him enjoy something in a new way and be a full part of the campfire experience.

Friendship

As parents, we want our children to thrive physically, emotionally and socially. We want them to be accepted and embraced for the wonderful, quirky little humans they are. We want them to have friends, good friends.

Over the last two years, I've had the pleasure of watching AJ thrive in middle school with an incredible friend group. He's found his tribe of friends who share common interest, laugh hard together, definitely fit together in their own wonderfully weird way and have each other's backs. It's been such a joy to get to know these boys and to see AJ have the friendships he's developed. And, boy, is he a good friend, thoughtful, kind and empathetic.

With Teddy, it's always a bit of a mystery what happens outside the realm of our supervision. We know he's had playdates with our friend's kids and that he's a social boy who believes everyone is his friend. He's had two friends from the bus and school through the years who have done play dates, and he's certainly enjoyed those. But this last year has been incredibly special in terms of friendship.

At his after-school programming, he became friends with another younger boy. Since I don't do after-programming pickup most days, I was quite confused at the library when all of the sudden a woman asked me if Teddy was Teddy. I said yes, and she told her son that Teddy was at the library. This little boy screamed Teddy's name, ran across the library and scooped him into a hug all the while Teddy was grinning and excited to see him. I told the lady I needed a bit of help, and she clarified her son and Teddy were friends from this programming. It was just cool to see that relationship.

The other relationship that has blossomed into a full-on bromance is Teddy and his friend Mikey. What started as classmates and friends at school has evolved into all sorts of play dates this summer, playing baseball on the same team, shared dinners and all sorts of fun. No matter how much time these two spend together, it is never enough! Mikey is constantly asking what Teddy is doing, when he'll see Teddy and if Teddy can come play. And Teddy is always searching for more of Mikey, asking in his own way to include him in activities and literally bouncing up and down with joy to see him every time. 

Baseball besties made this season even more fun!

It was interesting hearing from Mike's parents about their introduction to Teddy. They said Mikey constantly talked about Teddy, how much fun they had at school, how they sit together, and nonstop chatter about Teddy. But they never got details exactly on what they did together or what they talked about, so they weren't quite sure what to expect. They reached out to us through a letter sent home on the bus with Teddy how they've heard all about Teddy and would we like to get together. I was so tempted to be sassy and say we'd never heard a word about Mikey but figured that wasn't a good way to start a friendship. You can imagine that when they learned Teddy is non-speaking that clarified for them why they never heard what the boys discussed. 

I'm so glad they reached out because the two boys are such a joy to watch together, and they make each other so darn happy. Mikey talks enough for both of them, but they understand each other with Teddy's signs and gestures and simply get along. 

For a child like Teddy, it's incredibly cool to see this type of friendship develop. I'm here for all the best friend moments! (No, really, I still have to supervise Teddy. But dang, this is mostly joyful to supervise.)

Happy Belated Birthday!

Two weeks ago we celebrated Teddy's 12th birthday. While 12 may not seem like a milestone, every birthday for Teddy feels like a milestone because of the medical literature that existed when we got his diagnosis when he was 2.5 years old.

At that time, there was so little known about his disorder (at the time called Multiple Congenital Anomalies-Hypotonia Seizures Syndrome 1, now known as PIGN-CDG) that Google returned less than 10 results. And tucked into those results was the life expectancy of 3 years.    

Imagine reading that when your child is only 6 months away from turning 3, wondering why he has this invisible expiration date that you didn't know existed, contemplating how your relatively healthy child could be dead in months. 

Needless to say, the medical literature was wrong. While his disorder does unfortunately take away far too many of our children far too early from complications from seizures, respiratory illnesses and a world that is too hard for those sweet ones with medically fragile bodies, others are surviving and thriving well into their 30s and likely beyond. Given that this disorder was only discovered in 2011 and that there's so few known cases, that's why we aren't aware of older individuals, not because they don't exist.

So that's why birthdays feel monumental. At times they feel challenging because it's hard to know what to get Teddy some years. Other years it's a reminder of another year of age, yet developmentally not being where his peers are. We never know quite what emotions will arise with birthdays. 

But this was a sweet year, a day filled with a bunch of family and friends. A day spent playing with all his people, loving that more than any of his gifts, though he did great opening his gifts. A year with lots of ice cream gift cards, so he and his best friend can keep visiting Baskin Robbins like it's going out of style. 

Oh, and there was dancing and a giant dinosaur balloon to ride ... until it died. But it's probably an OK thing that it died because Teddy was about to make all the adults ride it. 

Birthday boy with his toys. 

Miracle League - 2026 Season

When you have a child with disabilities, you discover an entire world that you didn't know existed. I'm so grateful we are living in the era we are in terms of access to services, resources and opportunities to enjoy childhood for Teddy. There's so much that exists now that I don't believe existed during my childhood. 

One of the amazing opportunities is Miracle League, which provides kids the chance to play baseball on an accessible field partnered with amazing volunteer buddies who support their needs. Year after year, Teddy has had great buddies, and this year Sam did amazing with him. From the first game, Sam was comfortable interacting with Teddy, guiding him where they needed to go and supporting him to bat and run the bases. It is so cool as parents to see these young volunteers shine with how they interact with our children, and Teddy lit up when he saw Sam each week.

Sam + Teddy = All smiles!

This season was extra fun because Teddy has become best friends with Mikey through school this year. As parents of a non-verbal child, it took us a while to realize Teddy had this best friend, but we eventually figured it out. These two boys cannot get enough of each other. It doesn't matter if they spend hours together during the day, they're constantly wanting to hang out again with each other. 

So they were on the same baseball team, which meant every Tuesday we got to hang out together at the ball field. Teddy loved having his friend with him to bat next to him, play together in the outfield, get ice cream before or after the games, share supper before and ride together to games. Their friendship made this season extra sweet for all of us.

These two are something else together!

We're lucky that Teddy has such amazing family and friends. Every game came with a cheering section, complete with grandparents, great aunts and uncles and our adopted kids or some combination thereof. It's truly a blessing to have family and friends who show up for us to share in the ordinary moments of summer that really are the extraordinary moments of life. 

Train Time

When you live in Wisconsin, you look forward to signs of spring. Whether it's early tulips and daffodils poking through the cold ground, the grass slowly turning green or the warmer days, they're all harbingers of spring. Teddy's favorite sign of spring, though, is the start of train rides at the National Railroad Museum. 

We're fortunate to live within an hour of this incredible train museum. Like our membership at EAA, one day I hope to go and actually read all the exhibits, but for now I get to enjoy bits and pieces, whatever I can read in the moments that Teddy stays in one place. Usually, though, he's on the go exploring all the trains. This museum is fantastic because so much of the exhibits are a "yes," not a "no" for Teddy. What I mean by this is that you're allowed to climb inside and walk through more of the displays than not, which is exactly what Teddy wants. 

I mean, really, it's not enough to just see a train. You have to walk through it, sit in it and, of course, try to drive the engines! That's how you experience the full joy!

One of the great things with a membership is that we can visit for 20 minutes if Teddy isn't feeling it (usually never the case) or as long as we want. A membership means a quick visit is just as worth it as a long visit when you're not paying an individual fee for entrance only to have a tough day and have to leave early. 

The best part of the membership, though, is the train rides that are included! There's a 20-minute or so train ride every 2 hours during the warmer months. A perfectly time visit starts with a train ride, followed by exploring all the trains and exhibits, capped off with a second train ride. (We might be the only family to double up on train rides, but I doubt it.)

Train rides are one of the best things!

This past weekend was the NFL draft, hosted in Green Bay. This meant the population of the city was more than doubled in size to host this event, which made people shy away from the city if they weren't there for the draft. It also meant the train museum ran train rides on the hour.

So we drove the hour north, hedging our bets that traffic wouldn't be a nightmare and that parking at the museum wouldn't be too bad. And we struck gold. Since so many people didn't venture out, the museum was remarkably quiet. In fact, we had the first train ride as a private train ride, during which Teddy befriended the conductor and made him sit right next to him. It was a great experience, fantastic to hear this kind volunteer who trains all other conductors take interest in Teddy and share how they are dementia certified and work to make it a great experience for all people. We got to witness this in action on the second train ride of the day when another child who plays in Teddy's baseball league was really excited and then agitated and sharing that with vocalizations. The conductor simply paused in his tour when necessary and picked right back up, never judging or making the experience anything less for anyone ... well, except maybe Teddy who still thought the conductor should sit right by him again. 

Teddy and his new best friend, all smiles!

Gratitude and Perspective

I just finished watching the movie Henry Poole Was Here. It wasn't a movie that I loved, but I felt too invested to not finish it. So I did. Without spoiling the movie, I will say I took away the message about living in the moment and enjoying the gifts we have. 

I'm trying this year, sometimes successfully and other moments not quite so much, to be present. Life last year was a wicked reminder that nothing is guaranteed and that our lives can change in an instant. (The ironic thing with cancer is that we feel as though our lives change in an instant, yet the change is already happening inside our bodies for some time before it's discovered. Perhaps that's too deep for this blog, but I'd like to think the same is true for positive changes as well ... that they're occurring long before we see the results.) Anyways, my intention is to be present and soak in the moments, finding the joy and happiness that exists each day.

Last week Teddy woke up at 3:30 a.m. Not for a bit before falling back asleep. No, he woke up for the day at 3:30 a.m. 

I'll be the first to admit my gratitude at 3:30 a.m. is outweighed by my desire for sleep. However, I checked weather and determined that, yes, indeed, it was warm enough to take Teddy outdoors. So Dave hung with him until 4:30 while I was super productive prepping cookies and breads for my bakery. Then we bundled Teddy in snowpants and all his gear (because warm enough in Wisconsin March still means snow gear to protect from the chill). And we headed to run with my friend at 5 a.m.

5 a.m. photos are a bit blurry.

Fortunately, I have incredible friends who aren't surprised when we have an extra running buddy for our early morning runs. Better yet, a few of them willingly offer to help push him! Teddy absolutely loves hanging with my friends and loves running with us (even if there's no popcorn and barstools afterward). So we did 5 miles of both cardio and strength training (as he weighs a solid 100 pounds now, plus his chair) before 6 a.m. 

Although we joked about being out of shape for pushing, I headed home from that run filled with gratitude that I can still run with Teddy. So many things have become more difficult or impossible through the years, and this is something we both love doing together that we can continue to do. 

And, let's be honest, few things make you feel more like a kickbutt human than pushing your son for a 5-mile run at 5 a.m. even if you wish he was still sleeping then.  

Winter Picnic

One of my favorite winter traditions is our winter picnic. This winter hadn't cooperated with a lack of snow, then insanely cold temperatures and then a very busy February. So when the weather looked beautiful this past weekend - highs in the 30s - I reached out to my dad to see if we could do the picnic, even though we wouldn't have Dave because he was in Florida for work.

My dad said yes, which is good because just a couple days later the unseasonably warm temperatures destroyed our snow. And snow is a crucial element for winter picnics because a winter picnic includes rides on the incredible snow tube contraption my dad designed and built years ago (probably 8 years?). 

So the boys and I headed to the farm for a fun-filled day. It felt different, for sure, without my mom, as she was always willing to ride the tube and entertained Teddy for periods while we got things set for the picnic. But she'd be happy to know the tradition continues and that more fun memories were made.

In recent years, Teddy has been skittish about riding the tube, preferring to ride the ATV with Grandpa instead. This year he was all in for several tube rides with AJ and asked to ride with Grandpa while AJ drove. He was all smiles, even if I couldn't capture them through the windshield of the ATV.

We had so much fun we weren't even jealous of Dave in Florida.

The weather was beautiful, the fire cooked our hot dogs and s'mores perfectly, there were tractors to ride and there were even a couple shovels for Teddy and Grandpa to dig in the snow together. (Of course, Teddy kept trying to dig my adult beverage out of the snow, where I was storing it between sips for supposedly safe keeping.)

As we pulled into our driveway at the end of the day, after our 2+ hour car ride home, AJ thanked me out of the blue and commented how much fun the day had been. Now that he's a teenager, those type of unsolicited thanks and praise resonate even more.

The boys convinced Grandpa to ride the Beast.