Be Like Max ... or AJ

It's been more than a month since AJ's promotion ceremony at the end of school. This post may be a month late, but I'm no less proud of AJ now than I was then. AJ was one of two recipients of his class of about 140 to receive the Be Like Max Award ... or as I like to call it, the good human award.

Max was a student who graduated 8th grade in 2017 (I believe) who made a lasting impression on his classmates, teachers and staff. He always had a smile and a kind word to say to everyone. Apparently they did a Be Like Max Day and had the entire school pretty much decked out in shirts to support and honor Max.

When Max left Carl Traeger Middle School, a Be Like Max award was created to honor 1 to 2 special students each year who embodied the best qualities of Max: kindness, caring and empathy. The recipients are chosen by the entire staff, and they chose AJ.

Look at my good human!

AJ's literacy teacher gave a beautiful speech on why AJ was selected for this award, and I'm so darn proud of this kid. While I gave him a bit of crap about his teacher joking about what his parents do to raise such a helpful kid and said perhaps it was really our acceptance speech, it's all AJ.

No doubt, being Teddy's big brother plays a role in AJ being a kind, caring and empathetic human. He's been helping since Teddy was born, doing more than most kids do to help their siblings and enduring more doctor's appointments, therapy appointments and medical trauma on behalf of his brother than many kids. He's spent 14+ years wishing for his brother to speak. (Seriously, he's asked Santa for that as a child, and it's still a wish in his heart.) He's always been so empathetic, so thoughtful and so wise beyond his years. 

While we want AJ to do his best, reach his full potential and thrive academically and in the activities he chooses, being a good human matters most. At the young age of 14, he's already there. 

So darn proud of this kid and can't wait to see what he continues to do in life. 

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!

Miracles

We've been busy with life and adventures - more on spring break to come another time. In the moments before bed, I've been revisiting a journal of sorts, little notes left by Dave for me years ago when our boys were little. In those early years, our morning schedules often didn't overlap as I spent hours awake through the night nursing and comforting, so I often slept past the early hours he left for work (before 6 a.m. in those days). Those notes were often functional, relaying notes about laundry and little things, but so often filled with love, compliments and reminders about the blessings of our lives.

It's been special to re-read them, and some of them I leave the page open to linger on a few days. There's so many memories that come back in reading these notes. One recently gave me such pause.

This brought back all the feels. We spent several years trying to conceive and went through fertility testing to get this dismal prognosis. But God had other plans for us, and the medical professionals weren't on target ... or we beat the odds twice in 2 years. Both our boys were, indeed, miracles for us. 

But on the hard days, it's easy to forget how blessed we are with our miracles. There are moments and days where things are so hard that it's next to impossible to find the hope, much less the happiness. And years of hard days add up, and patience can wear thin. When the phases of childhood, the tantrums and behaviors of the terrible 2s don't phase out, when the diapers never end after 14 years, sometimes the joy is hard to find. When the things that are supposed to refill our buckets break our spirits (looking at you, vacation of 2018), it's hard to find your way forward. When the faith you were raised in isn't accessible to your child, it leaves you with guilt not guidance.

While we still have our hard days and hard moments, we've spent years building our way forward and working to find more joy, happiness and faith. We've found a church that welcomes Teddy with open arms and that he literally jumps for joy as we head into the building. We've built a community, extending our family by adding our caregivers as "adopted" children complete with an open invite to family dinner each Tuesday, celebrating birthdays and special occasions all together. We've leaned into respite camp and continue to remind ourselves to be intentional about respite for special times with AJ and with each other. We've bought our land and are building memories and enjoying nature there, in a place that is safe and inclusive for Teddy. 

And, I'm reminding myself through these notes from nearly 13 years ago, that we longed and prayed for babies to call our own. We've been blessed with our miracles, and they'll always be miracles no matter how old they grow. Honestly, Teddy becomes more of a miracle each year given his prognosis at diagnosis. 

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.

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. 

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:

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. 

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.

Expectations Vs. Reality

If you have children, you know things rarely go according to plan. (Honestly, if you're alive, you probably know things don't go according to plan.) If you have a child with disabilities, then it's guaranteed that your expectations will rarely be reality. 

This past weekend we got several inches of snow. Playing in the snow is one of the few things AJ actually enjoys doing with Teddy ... it's one of the last shared interests for play as AJ is maturing. So we spent some time outdoors shoveling snow and playing in it during the storm, which was fun for the whole family.

I find there to be few things as peaceful as a walk in the woods with fresh snowfall. Now, I knew a walk in the woods wouldn't be peaceful with Teddy, but I wanted a family adventure so off we went. I knew that my ideas of "hiking at least a mile" were doubtful, especially with the small trail we went. I knew my husband's expectation that he'd just pull Teddy in the sled were even more dubious, as was his belief that Teddy wouldn't notice the school playground. What I didn't realize was that AJ also had expectations of pulling Teddy in the sled by himself to help. Teddy's expectations I believe included eating copious amounts of snow and finding a playground to enjoy. 

Those are genuine smiles. 

So reality looked a bit like this:

1. Everyone happily walking, except Teddy who was in the sled being pulled by AJ. Me wandering ahead and making an extra loop to enjoy extra time while we putzed at our slow pace. This lasted maybe 5 minutes or so where everyone was happy.
2. Teddy tipping out of the sled and deciding Dave should go in the sled. So AJ and I pulled Dave surfing style for about 20 feet until he begged us to stop before he toppled. 
3. That led to me surfing for a couple hundred feet as we looped around the lake.
4. Teddy spotted a gazebo and had to explore. That was easy. The hard part was convincing him to leave.
5. We were excited to find the book Bear Snores On on display to read, even though we read it completely backward.
6. Teddy spotted the playground and tried to make a break for it.
7. Teddy flopped. Multiple times.
8. Teddy was willing to get in the sled with AJ, which meant we were pulling about 240 pounds. 
9. Teddy fed AJ snow. (This was my favorite part of the walk, and I got it on video that won't upload here.)
10. Teddy flopped. More times. 
11. We got Teddy in the sled and booked it as fast as we could to get closer to the car. AJ was disappointed not to pull Teddy on his own.
12. Teddy flopped. More times. 
13. We made it back to the car. Everyone was disappointed in their own way, some big and some little. 

But we got to enjoy almost an hour of sunshine, fresh air, some laughs, exercise (especially hauling 2 kids) and family time. Life isn't perfect, but it's about enjoying the moments and trying to make memories. 

Monday Musings

With beautiful weather this evening and an extra hour of daylight, we headed outdoors after supper to enjoy it. AJ and Dave went for a walk, while Teddy and I logged some running miles. As we ran along, I noticed that while not everyone smiled and interacted with us, the vast majority of folks did indeed smile at us. 

Now Wisconsinites are generally pretty friendly, so it's not unusual to greet strangers. What I noticed, though, was that most of the people who smiled at us were smiling as we approached. I realized, and said aloud to Teddy, that he simply brings people joy. I'm sure that his excitement to be outdoors and running was what brought a smile to their faces.

At the end of their run, Teddy and I visited a park to play for a few minutes while we waited for Dave and AJ. He loves parks and asked for it each time we ran past.

Teddy's a fan of parks any time and any where. Dave, not so much.

There were a couple boys around Teddy's age who had waved at us as we ran by the first time and waved again when we stopped at the park. I asked if they knew Teddy, and I heard them acknowledge they did. Teddy ran right up to them, and one of them hopped off the swing for Teddy to take a turn. 

When Teddy ran off to the playground structure to climb, the one boy encouraged the other to go play with Teddy. So, they did ... after singing the Barbie song. I figured Teddy was fine playing with his friends, so I walked his chair over to the picnic area before coming back to stretch.

It was really sweet to see them all playing together. The 2 boys included Teddy, offering him turns to race down the slides with them and encouraging him up the playground structure the one time he struggled because he was trying to scale up the wrong spot. I hadn't caught their names when I asked them the first time, so I tried to fish around to figure out which classroom at his school they were in to piece it together perhaps. 

I asked if they were in Teddy's classroom, and they both said no. Imagine my surprise when both of them said they went to different schools. *Whoops. I clearly misheard them when we first arrived at the playground.* 

I asked how they knew Teddy, and they said they didn't but they just liked making new friends. Then one of the boys said, "Not to be rude, but does he have a disability?" I shared that Teddy has autism and a genetic disorder. 

Well, the second part prompted quite a few questions to help them understand what that meant. I explained that Teddy doesn't talk like us, but he uses a tablet, sign language and gestures to communicate. The one boy said, though, "Oh, he's just like other kids but he doesn't talk." I said that it takes Teddy longer to learn to do things, like walk, but that he loves to have fun just like they do. 

The autism part they understood, so they questioned whether I knew every autistic child they knew. The one shared about his brother's autism diagnosis and how his brother loves to read about the things that interest him. 

The boys complimented Teddy's chair and thought it was really cool. They asked how far we ran, and I told them we ran 4 miles. The response was awesome from one of the boys: You're mom of the year! So I told them Teddy runs in races with it, and that we use it for biking.

That prompted the more outgoing boy to share that he loved riding bike with his dad, but his dad wasn't able to go for bike rides now. I got the sense where he was going before he said his dad was locked up for something he didn't do ... and that he won't see him until 2026. That broke my heart for him and made me realize, yet again, how blessed our family is to have a stable family unit despite the challenges that come with Teddy. 

That's about when Dave and AJ arrived, so we had to leave. I walked away a bit in awe of what had just occurred. Given how the boys interacted with Teddy, I would have sworn they were peers at his school. Instead, they were just being good humans who didn't think twice about including someone new, lending a helping hand where needed and seeking to understand and make connections. Seriously, I didn't even mention that Teddy didn't talk until the end of the conversation because, again, I thought they all knew each other. 

It was just a heart-warming moment of the best of humanity ... from two 5th grade boys. (And lest you think they were angels dropped into our lives, I can assure you they were 5th grade boys who also swore at least once and one bagged the other by accident. Pretty sure they're human.)

Springing Into Spring

It's been an unseasonably warm winter in Wisconsin, and that trend continues with an unseasonably warm and early spring. We all think Mother Nature is going to wreck havoc on our hopes (and unfortunately every living plant that has already started growing, not to mention all the critters out and about) with some wicked cold and snow yet. 

But for now we've been taking advantage of the warmer weather. That meant last weekend we spent the day at our land with light jackets (or no jackets when hiking) enjoying the sunshine and fresh air. It was a perfect day for tractor rides for Teddy, an outdoor picnic, ranger rides, fishing for Dave and some small but fun hikes. In other words, it was simply a perfect day.

Teddy found the swings and invited me to join the fun.

Aside from weekend fun, it's been busy here. We're on multiple wait lists for ABA services for Teddy, and that has come with a couple assessments. Most recently this week we had an assessment to start parent training, which is something one provider could offer as soon as next month until we can start services. (Wait lists for services range from summer to next January for the ones we're on, with plenty longer than that.) We're still praying and exploring and honestly waiting as we determine what therapy routes are best for Teddy. 

We also did an assessment for speech therapy and are going to attempt outpatient speech therapy again, at least to finish out the school year. That assessment was really tricky, though, because Teddy freaked out at that part of the clinic, and I literally had to carry him into the room. I'm not sure what triggered him, but I'm nervous it's going to continue as we attempt therapy. If that's the case, we won't make any headway with therapy because he'll never settle and be comfortable. So we'll see what happens.

He's also in a program called Advanced Development Motor Program, a program that partners UW-Oshkosh physical education students as part of their curriculum with kids with disabilities to provide a fun program for them. It's essentially 1.5 hours of gym, so Teddy loves it! In the past he's had a consistent "teacher," but so far this year he's trained 3 different "teachers." It's really a neat program that we're lucky to be able to access.

Aside from that, our next big challenge is finding childcare for summer. I know I've talked often about our amazing childcare providers. Unfortunately, neither of them are available for the hours we need this summer, so we're back to the drawing board. I like to think of this as a chance for us to "adopt" another person into our family. Ha, we probably won't be that lucky, but please do wish us luck as finding childcare for Teddy is always a challenge. 

Merry Christmas Eve

There's something nostalgic about trains at Christmas time. Whether it's the somewhat more recent Polar Express or the idea of a train around the Christmas tree, trains simply go with Santa. This year one of our gifts for Teddy was to head to the Mid-Continent Railroad in North Freedom, WI for the Santa Train. We did this in early December, and it was the perfect family adventure.

Teddy was so excited about this trip. Though he can't talk, he told everyone who came to our house about the train ride by showing them the brochure and pointing specifically to the Santa picture. This was for a couple months leading up to the adventure as we had the brochure on the fridge. 

The trip didn't disappoint for him, as he was so excited when we pulled into the train station. The only disappointment for him was that the museum had hardly any train cars you could climb on to explore, unlike the one we visited in Duluth earlier this summer. He thought he should be able to explore every car, even trying to sneak onto a few because that cord across the stairs is clearly not meant for him. 

The train ride itself was pretty darn perfect for us - about 1.5 hours with enough going on to keep Teddy mostly in his seat. As a parent, I appreciated that all that was advertised was a quick visit by Santa, so everything beyond that was a pleasant surprise. Santa started in our train car and made his way with Mrs. Claus to take pictures with every family and have a quick chat. Of course, Teddy invited them to sit down by him. 

All smiles for Santa and Mrs. Claus.

After Santa moved along, we heard a reading of T'was the Night Before Christmas and got little stockings with a few treats for the boys. Oh, we also got a rubber duck dressed as a conductor that Teddy thought was pretty cool. 

Showing off his rubber ducky.

The train only went a short distance down the line before it turns around, so we didn't cover a lot of ground, but it was very scenic. On the way back, just as Teddy was getting a bit squirrely, we had a group of high school students come into our train car to sing carols. Teddy thought that was the best to have a group of pretty girls (with a few guys, too) standing right by him, smiling and singing to him. His absolute favorite was Jingle Bells because he got bells to play through the song.

It was a truly wonderful experience, something we all could enjoy. Afterward we checked out a candy store on the way to our second main destination, Buffalo Phil's, a restaurant in Wisconsin Dells. We had wanted to check this place out for a few years due to two features: food delivered by trains and all the Lego displays. Let's just say neither disappointed for AJ, especially the entire Star Wars Lego room with nearly all the Lego Star Wars in existence. However, Teddy was freaked out.

Now, to be fair, eating in a restaurant with Teddy is usually a quick affair as he has no willingness to sit still for any amount of time, wants to socialize with others, etc. Sometimes he's just in a mood, slithering out of the booth and seeming to intentionally create chaos. This time, though, was different. Something he saw or experienced in the restaurant freaked him out, whether it was all the life-size characters or who knows what exactly. But after our drinks came and he went for a walk because he was a bit antsy and there was a lot to see, we could barely get him back in the booth. In fact, he and I stood by the booth just waiting to have our food come to put it in to-go boxes for him and Dave because all he wanted was to go back to the car. 

This type of thing is happening a bit more, where he gets genuinely freaked out and needs to leave someplace because it's simply too much for him. While it's frustrating to not be able to enjoy a restaurant we thought was about as close to a sure thing for our family as would exist (with the trains), it's understandable when it's truly fear versus just being sassy, so to speak. I wish we could figure out, though, what triggers these moments of freaking out to better navigate them.

Regardless, it was a fantastic family day and definitely something to repeat! We'll just skip that restaurant next time. 

The End of an Era

As the years have progressed, we've used our backpack carrier less and less. That's understandable as Teddy has grown. Physically, he's now close to 4 feet tall and weighs 80 pounds. When I'm only 5 feet 2 inches on a tall day, there's not much height difference between us. He's also grown steadier and stronger in his walking, though his ability to listen hasn't grown in equal proportions unfortunately. 

For the past several years, each time I pulled out the carrier I was reprimanded by my loving husband and mother ... truly from a place of love and concern that I'd injure myself by carrying Teddy. I insisted on bringing the carrier last year on vacation (and used it on one hike for just a short stint when the listening ears and all other attempts failed). When I didn't pack it for vacation this year, I knew it was time to pass it along to another family in need.

We had to do one final "ups" before mailing the carrier. He still fits. ;-)

Since it was hard for me to give up this season of life, I wanted to give it to another PIGN-CDG family who could benefit. As I type this, our carrier is on its way to Colorado where I hope it brings a sweet 4-year-old boy and his family as much as it did for our family.

Look at that toothless grin! We loved exploring together!

This carrier (and its predecessors) allowed us to get through the basics of life. It made grocery shopping possible when I needed my hands free. It made shopping trips possible when I couldn't wrestle Teddy into carts anymore due to his size, especially combined with my height. (There may have been a couple times we upended the shopping cart when I was trying to wrestle Teddy out by myself.) It allowed Teddy the snuggles and closeness he needed when he was in a mood and needed all the extra love ... yet I couldn't just hold 60+ pounds of sad Teddy.

We did plenty of hiking at our land with the carrier. Ted had to take an important call.

Beyond making the ordinary moments easier (or simply possible), this carrier traveled the country with us. I'm pretty sure this carrier has visited more national parks than many Americans. So, I couldn't resist searching back in time and sharing a handful of places we've been and memories we've made with this carrier. I'll be forever grateful for what this carrier gave our family.

You couldn't always see Teddy in the selfies, but you can see Black Canyon of the Gunnison.

It's completely safe. He's strapped to my back at Olympic National Park.

This was when Teddy still had pacifiers attached to the carrier at Rocky Mountain National Park.

Again, perfectly safe to walk up a river with a child strapped to your back. 

No way we trusted Teddy around the ancient ruins at Mesa Verde.

Not pictured are the ladders we climbed to get to this view in Canyonlands.

Sometimes I even let Dave carry Ted, like here in Great Sand Dunes.

Vacations

Since we got married, we have spent our vacations camping. While we’ve done nights in hotels, as the years progressed more of our nights were spent in our tent. Even as we added AJ to the mix, we continued with a trek into the backcountry (camping remotely where you hike in with all your belongings). When Teddy joined our family, we knew backcountry wouldn’t be feasible at least for few years until the kids could hike in themselves (hahaha … if only we knew with Teddy), but we continued with our camping adventures. In fact, the year Teddy turned one, he did so in Crater Lake National Park on our longest adventure with 3 full weeks of camping and exploring our national parks.

But each year Teddy got older, it got harder to enjoy vacations. Sleep has always been a struggle for him, especially when we aren’t at home. We’ve had vacations where he’s been up for the day at 2 a.m. or 4 a.m. or wouldn’t fall asleep until he screamed himself to sleep for several hours finally at 11 p.m. Not pleasant for any of us, and really tired parents don’t make for the best travel companions.

Our vacation 5 years ago nearly broke us … we came extremely close to turning around and coming home after the first 2 days. That’s when Dave decided we needed land where we could all enjoy nature, where Teddy could learn to sleep and we could actually enjoy ourselves and relax. That’s what led to our beautiful piece of heaven on earth, for which we’re extremely grateful.

That coincided with the global pandemic that shut down the world in 2020, and we continued to live in a bubble through 2021 and the first half of 2022. When we decided to adventure on vacation in 2022, we brought reinforcements: one of our beloved childcare providers aka adopted daughters. And we decided then that vacations should always include an extra set of hands.

Our adopted daughter was in charge of the selfie family photos.

So we headed on a short vacation at the end of June to Duluth, MN and the surrounding areas with our other adopted daughter, Sigrid. We spent the entire time in the same hotel, which helps Teddy adjust for sleeping, and did day trips to surrounding national parks (Apostle Islands, Voyageurs and Grand Portage), waterfalls and Canada.

The entire family for this vacation!

Our trip was very different than our trips of the past with all our time in a hotel and much less time in our parks, but we got to explore places in different ways. We did a train ride from Duluth, and Teddy was oh so excited because trains are one of the coolest things in the world.

He loved the boat rides!

We also did 2 different boat rides. The first was to Kettle Falls in Voyageur, and Teddy adored that board ride on the smaller boat. He even managed to keep his cool when we were stranded right by the dock for an extra 30 minutes riding out a storm. The second was the Apostle Islands Grand Tour. We intentionally waited to make sure the first boat ride went well before we committed to the second set of boat tickets. While Teddy was far more squirrely on the bigger boat, we managed to enjoy the scenery and the tour (and were quite glad we brought his chair to help him settle down. OK, fine, he got put in there in time out several times because playing on the stairs on a boat is not cool.)

This is why we need extra hands.

Our trip to Canada included several beautiful waterfalls and an adventure into Walmart to stock up on Canadian candy (and ketchup chips to try). We also had to find maple donuts for AJ’s cravings—that’s what he wanted most on this vacation.

While it was different than our trips of the past, it was a fantastic vacation filled with family time, happy memories, natural beauty, history and most of our sanity.

This is the best picture of vacation.

Bike Rides and Bonus Bike Rides

The other week we had gorgeous unseasonably warm weather, so we went for as many bike rides as possible. In fact, AJ, Teddy and I went for a bike ride the night before my team's 55-mile running relay race. AJ was up for the longer route, so we ended up doing 8 miles instead of 5 miles. 

As we finished up our ride, I turned around and noticed Teddy was missing not one, but both, of his brand new shoes. This was the first time I think he wore the shoes, as I had bought them the previous night. When I asked him where his shoes were, he just giggled.

So, despite the fact that I was done and daylight was fast disappearing, Teddy and I headed back out to double back at least a bit to see if we could find his shoes. I found the first one about 1/4 of a mile back, and he laughed like a giggle monster when I picked up that shoe and muttered choice words under my breath. 

I had planned to go 1-1.5 miles back at the most, as AJ was waiting at the vehicle, and it was late. Fortunately at 1.03 miles I found the second shoe. Apparently Teddy decided we needed some extra time to enjoy the beautiful evening. And I decided he no longer can wear slip-on shoes on bike rides. 

This is how the bike ride ended, thankfully.

So Much to Be Grateful For

Last week we celebrated Thanksgiving with Dave's family up north. We are abundantly blessed and it was (mostly) wonderful to have the cousins together. 

Teddy was a bit excited to be up north with his cousins. 

It's not easy taking Teddy places, even within our families where they know, understand and love Teddy. Most places, aside from our home, are not Teddy proof. There's breakable things, doors don't have all the locks and there's things simply not appropriate for Teddy. 

So visits other places require extra supervision, hovering like helicopter parents more often than not. Additionally, Teddy is, quite simply, a lot. He's a lot for us to manage and support, and he's a lot for his cousins because they're not used to Teddy barging into their space, perhaps stealing their food and playing in his way which sometimes means destroying their creations. 

The cousins spent quite a bit of time playing together wonderfully, and there were periods where minimal supervision was needed. There were also the stressful moments, the tears and the short tempers (me included as an adult). 

But Teddy had a blast. And AJ had a wonderful Thanksgiving. and absolutely loved spending a few extra days with his grandparents and hanging out with his cousins.  And we got to spend time with family and even enjoy a walk in the woods without chasing Teddy. Again, so much to be thankful for.