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.

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. 

Grateful for Graceful Wakes

Oh my goodness! Today was the perfect summer day thanks to Graceful Wakes. This amazing organization partners with local water ski clubs (in this case the Rock Aqua Jays down in Janesville) to host accessible water skiing clinics for people of all abilities.

Teddy participated in this program last year for the first time and had a great day despite pretty crummy weather. This year our entire family went for the day of fun and enjoyed perfect summer weather and sunshine.

Teddy got to ski 3 times and was so excited each time. The last time he even was waving as he came back to shore. The skiers sit in a chair mounted on a ski, so even people who cannot walk can have a go at water skiing. They have side skiers on either side of the chair to hold and support the individual skiing in the chair.

It’s incredible the amount of volunteers who make these clinics happen. Picture almost 25 people getting up to 3 turns skiing, assisted by 2 buddies each time, plus another couple people in the water assisting with getting into the chair and catching when the skiers return, plus boat drivers, announcers and photographers. We’re so grateful they chose to give their time and talents to allow our family to enjoy today.

Teddy also got to hang out on the pontoon boat. We missed the few rides they did, but we asked if we could sit on the boat earlier in the day and were welcomed aboard. That was great since Teddy is obsessed with pontoons, and that’s all he wanted in the moment.

Just call him Captain Teddy. That's what he thinks at least.

He also got to enjoy a tubing ride with AJ, and AJ managed to sneak in a second tube ride. It’s such a fun treat for our kiddos since this isn’t something we normally have access to do.

The boys enjoyed their tube ride ... a lot!

It was extra cool to have one of our MTT friends Raymond and his family there as well, so we got to visit with them. Plus one of my running buddies now lives in the Janesville area, so she and her family joined us as well to watch Teddy’s first run.

Then on our way home, we had to stop at the World’s largest Culvers (a Wisconsin custard and fast food restaurant). The real treat was we walked into the restaurant right ahead of my aunt and cousins from Mississippi—they were headed home from a week at my parent’s farm. We hadn’t planned it, yet our paths spontaneously crossed.

Such a serendipitous moment!

This goes into the memory bank as a fantastic summer fun day—we’re so grateful for these types of opportunities. Sometimes we have to fight for things for Teddy, and these types of gifts of accessibility and inclusion are even sweeter than the best custard in the world.

One Heck of a First Day

Summer vacation is here! 

And Teddy had one doozy of a first day. 

The poor kid started his summer vacation with allergy testing. I anticipated this would be horrible, tears, physically restraining him and more medical trauma. So I recruited a friend to help me because Dave couldn't get out of work. It went so much better than anticipated with no tears, minimal restraints and only 3 positive allergies. (That probably contributes to why there was only minimal restraints to keep him from scratching.) We have a game plan to better treat his allergies and a follow up appointment to continue testing to rule out one of his two remaining antibiotic allergies listed in his medical chart. That will be nice to open the door to more antibiotics to treat all the crud he catches.

Then in the afternoon, he wanted to help me unload cinder blocks and didn't realize how heavy they were. His block he insisted on grabbing fell straight down his shin, scraping and bruising it. Still no tears because he's a tough cookie, but ouch!

The finale to the day was after a great bike ride with myTEAM Triumph. Teddy has now mastered the skill of unbuckling from the race chairs (great, but oh no!) and took off running. He fell off the sidewalk and face planted onto the curb. That resulted in a couple more scrapes, a bruised and cut lip and the real kicker ... 2 front teeth chipped significantly. Guess what, though? Still no tears from Teddy although you could tell he definitely felt the pain. AJ, on the other hand, felt responsible because he was trying to catch Teddy, and he cried for almost 2 hours. He has such a big heart.

His new nickname is Toothless from How to Train Your Dragon.

So, needless to say, on Teddy's second day of summer vacation, he went to the dentist. That was uneventful because they need to wait until the swelling is down before they try to seal/cap them. I don't anticipate that appointment will be so uneventful (or even successful), but I guess we'll find out in July!

Now, if the rest of summer break could be fun and we don't actually break anything else, that would be great!

Baseball was a Hit

Teddy finished his first season with Miracle League, and we're already looking forward to next season. I'm so glad we discovered this program and decided to give it a try, even though games are 30 minutes away. This is such a fantastic program that truly makes baseball accessible to kids with all different abilities and disabilities through a team of creative and caring volunteers. The amount of volunteers needed to support 16 teams of kids, each with a 1:1 buddy, not to mention coaches, photographers, umpires and more is a significant number, yet there always seemed to be plenty of helpers with smiles on their faces who love making baseball possible. 

Teddy's buddy Carlie was amazing with him. She quickly learned how to communicate with him and anticipate his moves. She definitely could keep up with him and was part of the reason he had a great season! He also had great coaches, who quickly knew him by name, cheered him on and supported him.

Teddy with one of his biggest fans and his amazing buddy!

This video captures baseball pretty accurately for Teddy. I thought he was coming to say hi to me, but he was more concerned about everyone else in the stands (none of whom he knows).

Play Ball!

Let's just say Teddy's buddy got her exercise last week at the first ball game of the season. Teddy was like a ping pong ball: here, there and everywhere. Fortunately, the gates do shut, so the teams are contained to the field and their dugouts. Otherwise Teddy would have escaped to the bleachers because, well, bleachers are really cool. 

This star arrived with his fan club, including beautiful adoring women. ;-)

He was so excited to be with so many people, and to play baseball. He did great listening to some of his buddy's instructions, putting on his batting helmet and picking out a bat. Of course, he also tried to make her wear a batting helmet and gave her a bat, too. He was pretty excited to bat, but then he was too distracted to actually run the bases when he was supposed to run. Don't worry, he wasn't too distracted to run all over the field the rest of the time.

It was a combination of heartwarming and hilarious (mostly because we were laughing at our goofball son) to watch the game. There is sheer joy on the faces of so many players, buddies and family members. 

Teddy had his own cheering section, with both his sitters, us, one set of grandparents and then one of our sitter's friends. We've had so many friend and family ask when games are to come cheer him on, as well, so he's feeling pretty loved. 

They had a professional photographer at the last game who got some entertaining shots of him, that I won't share here as I don't have permission. But here's a snippet of his game with all his loveable distraction. 

It's going to be a fun season!

My Mets Star

It's an exciting day, folks! Today is Teddy's first game with Miracle League, which is an amazing organization that gives kids with all abilities the opportunity to play baseball. The league plays on an adapted field, which is completely wheelchair accessible, as many players use wheelchairs or have mobility issues. Each player is matched with a buddy who assists them with batting, fielding and hangs out with them during the games, so that parents and families can truly be spectators. 

We've heard nothing but good things about this program and finally decided to sign Teddy up because he loves being around people, and he gets a huge kick out of running around baseball diamonds. He was so excited to sit in the bleachers last week when we picked up his gear and met his coaches. It was amazing to see all the different kids who are going to play ball this summer, who all get to be included and participate in a way that works for each of them. 

I can't wait to share his baseball adventures with you!

Can you tell how excited Teddy was to meet his coaches?!?

It's Been A While

Well, it's been a couple weeks since I last posted. Aside from the chaos that comes with work (and trying to finish a PhD for David), we've been enjoying summer. We're still mostly living in our COVID bubble until the boys can get vaccinated, but we're working our way toward some normalcy.

For example, AJ attended art in the park through the rec department. Although he was one of only 3 students who wore masks because it was outdoors, he had a great time creating some masterpieces. He's looking forward to beginner archery in a few weeks. We recognize that he's been so socially isolated that he needs some interactions to remember how to conduct himself appropriately in public. (Truth be told, don't we all?) He has a play date tomorrow morning with both his best friends, and he's over the moon about that. 

Our boys have managed a visit or two to their sitter's lake house. They're eagerly awaiting later this week when they get to spend the day there, boating on the pontoon, swimming and perhaps even trying the jet ski. Can you picture Teddy on one of those? The best part is that both sitters will actually be there - one on the clock and the other simply because it's her family's lake house - so there's an extra set of hands. (Have we mentioned how lucky we are with our adopted daughters, as we call them? They even signed Dave's Father's Day card.)

We spent the past week at our land. Although it's not our typical vacation of traveling to different national parks, it allows us to safely enjoy nature and still get some rest at night. Let's just say our vacation 3 years ago was the catalyst for us looking for land to enjoy nature in a way that didn't make us all cry. Don't get me wrong ... I cannot wait to try that type of vacation again next year, but our land offers us outdoors, memories and reasonable nights' sleep. 

In addition to many projects while Teddy rode on the Ranger, hung out with Grandma or took tractor rides with Grandpa, we made some family memories as well. One of our family traditions each June is something called a dairy breakfast, where you literally go eat breakfast at a farm and enjoy all things Wisconsin dairy (milk, cheese and ice cream) plus pancakes and sausage. Last year, we missed that opportunity because of COVID, but this year we found a drive-through dairy breakfast that allowed us to safely enjoy our tradition. AJ thought we scored the jackpot because we got 12 ice creams for the 6 people in the vehicle! 

This was at the start of our hike, when he was extremely excited.

We also headed to Effigy Mounds National Monument. We visited there last summer, but the visitor center was closed due to COVID. It's weird how incredibly excited I was to see actual park rangers again and go inside the visitor center. AJ completed the Junior Ranger program to earn his badge, and I assisted Teddy with his. 

We attempted a family hike, where Teddy started out strong. But then he flopped to the ground and was unwilling to move. So we loaded him on my back, where he protested that mode of transportation. Eventually Dave took him back to the parking lot while AJ and I continued on. AJ and I had just finished the loop part of our hike when we discovered Dave pushing Teddy up the 450-foot switchback incline at the start of the trail. So we all got to enjoy the mounds together before tackling the accessible trail. Teddy walked much of the accessible trail, pushing his chair. That's his favorite mode to travel actually as it provides him just a bit of balance and allows him to maintain his sprint speed.  

This is the ideal way for Teddy to hike, as long as the trail has railings to keep him focused.

Hiking with Teddy has definitely become more challenging as he's rather opinionated and not easy to move against his will. We're getting something in the upcoming weeks that should assist for moderately accessible trails. More to come on that in the near future.

All in all, it was a good week at the land with quality family time, plenty of outdoors and a few really memorable experiences. There's one more that I'll share in a future post to spread out the fun and not overwhelm with pictures. 

Sliding Their Way Into Summer

Our boys started their summer this week with so much fun this week. Their one sitter took them to visit their other sitter. They spent the day playing at a lake, splashing and swimming in the water to beat the incredible heat wave and even boating. 

I got texts of videos showing the fun they were having. My reply was, "I'm jealous. That looks way more fun than work, as long as you are in charge of Teddy and I'm just in charge of mojitos."

It's such a blessing to have not one, but two childcare providers who are an extension of our family, who choose to spend some of their downtime hanging out with our family. Extra hands are always helpful with Teddy, particularly around water. He got to hang out on a boat, which he loves, and he got to spend time with two of his favorite people. AJ is ecstatic any time he gets to go to the lake. 

We're blessed. Now I just need to find a day to take off and enjoy mojitos while I watch them wrangle the boys. 

Teddy is the Best Brother to Me

AJ wanted to do a guest blog post, so here it is:

Hi, it's AJ. Since I have not wrote in a while, I thought that would do one. 

Teddy is a great brother during quarantine... even though he's getting cranky because  he is acting crazy like doing the plank on the handles of the treadmill and he is playing with the lights. But also we have to stay home more and wear masks like everyone should that does not want to get sick with COVID-19. 

I'm excited about the fact that we hit the no seizure for 1 year on June 10. Yay !!! 

But now is when I realized the most and best of my brother because of stay at home, and we have played a lot more with Teddy, and Teddy still learning. 

A week ago, I got stung by 2 hornets, and my brother had 5 swarming his head but amazingly no stings ... mind blowing!!! 

Our summer has been going good!!

Fireworks at the land.

Perfect Summer Days

Our 4th of July adventures included a trip up north that was shortened due to Teddy sleeping poorly the first night, lots of bugs that prevented being outside, humidity and the cousins going away on a day trip to see waterfalls. We all left the cabin a bit disappointed, but sometimes plans need to be adjusted rather than sticking them out and being crabby and tired.

Coming home a day early allowed us to visit the farmers' market and enjoy some tasty donuts, along with seeing Santa in July. I dare say that this might be the best picture with Santa we've gotten ... at least in the last few years. Teddy was intrigued rather than terrified, so that was fun.

Such a great Santa photo, at least for my boys!

Then my aunts came to visit, along with my Grandpa and one of my cousin's daughters. We had fun playing at our house before heading to a park for even more fun. It's amazing to see what Teddy can convince his great aunts to do, without even saying a word. Trust me, Teddy's rather persistent and convincing. Come to think of it, he'd be excellent and charades, as long as you can push, pull and physically direct people.

Teddy did remarkably well climbing this, chasing the older kids.

My uncle and his significant other came over later in the afternoon, so we had a fantastic supper on the deck with the kids running around the yard playing. We couldn't have asked for better weather because the humidity moved on, and there were so few bugs. It was truly a perfect summer afternoon and evening.

All the children lasted until dark to light sparklers with the torch that AJ designed and helped build, followed by three fireworks. (Dave's mom generously sent along fireworks and sparklers for AJ since he missed out on them by us leaving a day earlier than planned. She also sent enough food to feed my entire family supper. We're pretty darn lucky for a lot of reasons.)


For backyard fireworks, they were quite the show. Teddy loved the popcorn one and kept clapping his hands for it. Oh, and the kids all got to enjoy s'mores around the fire pit as well.

Teddy and sparklers = way more dangerous than any other child.

Today was even more fun at Bay Beach in Green Bay. It's a small amusement park with rides ranging from 25 cents to $1 for the Zippin' Pippin', which was one of Elvis Presley's favorite roller coasters. The little kids had the best time, and the adults tested how strong their stomachs were with the Tilt-o-Whirl, the Ferris wheel and the roller coaster. We followed up lunch with a walk through the wildlife sanctuary where the kids got to feed the ducks and geese along with a wounded deer. We also got to see a cougar, otter and foxes. We didn't get to pet or feed those, which is really a good thing. (I think Teddy wanted to ride the deer.)

It ended up being an absolutely wonderful summer weekend with great weather, family and many memories made.

An Incredible Weekend

A couple weekends ago we spent a short weekend in Chicago. The boys and I met Dave in Fond du lac at 11 Saturday morning and headed south. We checked out a donut place in Milwaukee, which was nothing too remarkable aside from serving vegan donuts. We also snagged some cheesecake from the Cheesecake Factory for the adults' treat. (Let's just say it was a rough week at work, and I was finally to the point that I was eating my emotions.)

Our first stop in Illinois was Legoland, which had lost a bit of its magic for Dave since we first visited two years ago. I think Teddy enjoyed it more this visit. We rode the few rides together, and AJ watched two 4-D mini movies. Teddy soaked himself with the water area, and AJ could barely leave the store with all the enticing LEGO products. Amazingly, though, he left without purchasing anything despite more than $100 burning a hole in his pocket.

From there we headed to visit Sammie and her family. Sammie is an 11-year-old girl with CDG-PIGN, the same diagnosis as Teddy. We first met Sammie, her brothers and parents two years ago at Legoland, and it was such a blessing to actually meet another CDG-PIGN kiddo for the first time. When we reached out to them a week before this short trip, we were able to make plans for dinner together, so we headed to their house.

Spending time with Sammie, her older brother and parents was the best part of this weekend for me because it's just so incredible to see someone else with this diagnosis and all the similarities. In a world where Teddy is just so rare, moments where you see another child and think, "Wow, that's so much like Teddy!" don't happen. Sure, there might be kids with braces like Teddy or charming smiles, but it's different to see someone with similar (of course, more advanced) communication styles, gestures, attention spans and personalities.

They have a ball pit. It was awesome.

I loved watching AJ play with Sammie, falling right in step with games of hide-n-seek to help her find her older brother. He understood Sammie so well that he only once or twice asked for help understanding her, despite her not using her talker, because he's so accustomed to Teddy's methods of communication that he could piece together between that background and Sammie's limited vocabulary. That's a pretty incredible skill for a soon-to-be 7-year-old child.

We enjoyed our favorite deep-dish pizza with them and watched the children run around while we conversed as much as we could. I wouldn't say their house was completely Teddy proof, but they understand the art of physically blocking spaces and redirecting children who want to be elsewhere. It was so comfortable to just let Teddy be Teddy with minimal efforts to keep him contained or any need to apologize for his lack of social skills or appropriate behavior. They just get it because they've lived it.

So hard to get both Sammie and Teddy still for a picture, much less looking at the camera.

I hope they get something out of our visits because we spend so much time asking questions to understand when Sammie reached milestones or what challenges still exist and what things have gotten easier over time. It's like a window into the future of what could be, and it gives me so much hope.

After several hours of fun together, we left to catch a quick dip in the hotel pool before bed. We hit the jackpot of hotel pools with a warm pool for once! We didn't stay in it long because it was late, and we had more adventures the next day.

AJ was slightly afraid of sting rays. Teddy wanted to go in their pool.

Sunday's plans were the real reason for our short trip to Chicago. We headed downtown to the Shedd Aquarium to meet Teddy's running buddy from I Run 4, Heather, and her husband Steve. This was our second time meeting them, as they came over last summer to spend a weekend with us and run with Teddy. We met somewhat in the middle since they live near Detroit to hang out for a while. We've never been to the Shedd, and it was a really neat place to visit. There were interesting displays of art made out of garbage from the oceans and more sea and water creatures than you could imagine. The boys both pet sting rays and sea stars. Teddy and AJ had fun on the submarine for children to explore as well as the penguin play area, and AJ got to see a few penguins up close and personal as they were being transported behind the scenes by the elevators. It's a pricey place to visit, but it was definitely worth seeing, particularly with the company we had.

AJ's highlight was his close penguin encounter.

Heather has been such a fantastic running buddy for Teddy, sending him posts via Facebook, cheering him on with all his milestones and simply being part of our extended family. The time they spent with us last year was incredibly comfortable, and this was the same. I love that Teddy gets to spend time in person with his running buddy because that is what connects for him, so then he recognizes Heather's pictures when I show him her posts.

Somehow we got everyone looking! This was before Teddy discovered the Segways.

We grabbed lunch at the aquarium and then headed toward home with one more stop at the LEGO store in Milwaukee and Barnes and Noble for some escalator rides, which is Teddy's jam. AJ finally managed to score some LEGOs at Barnes and Noble that were on clearance to boot. All in all, it was a fantastic weekend full of fun, friends and positive memories.

Sweltering Summer Fun

AJ's had quite a few solo adventures this summer: a weekend with Dave's parents, a week with my parents, two nights in Milwaukee with my aunt and then last night with his babysitter in Green Bay. Since AJ had special plans, I wanted to make the most of my solo afternoon with Teddy.

That's why, despite it being 90 degrees, we headed to Bay Beach, which is a local amusement park where $5 got us both on the carousel, Scrambler, bumper cars, helicopter ride as well as rides for Teddy on the children's cars and fighter planes. 

Hanging out in the helicopter.

The carousel has been a favorite of Teddy's for quite some time, but I think it's safe to say that bumper cars is a new favorite. He loved crashing into others, being smashed into and steering our car.

We get to crash people!?!? Sweet!!!!

I discovered that the Scrambler is not my favorite. I swear birthing children messed up my equilibrium that rides like the Scrambler and even the Ferris wheel make me slightly queasy. Fortunately, Teddy seemed to enjoy it more than I did and didn't need my pep talk to get through it. (But I did.)

Teddy liked the car ride he did by himself, and he loved the fighter plane ride. As I watched him go round with the other children, I observed that Teddy looked downright joyful whereas other children simply looked happy. There was no child I saw with a bigger grin than Teddy, and he was the only child literally bouncing in his seat. (I could tell that because his plane was bouncing up and down.) 

He's ready to fly and fight!

The one thing that really made yesterday enjoyable was the disability access pass. We've never done this before, but I asked because I saw signs that they were available. It allowed us to bypass the lines and enter through the exits. Given the temperature and the fact that I was solo with Teddy, I decided to take advantage of it. It allowed me to park his chair right by the exit, help him out of his seat right before it was time to go and hop on the rides. I didn't have to fight him in lines, hold him when he collapsed his weight or otherwise wrestle him. It made the day so much more enjoyable and easier for him and me. 

Who would have thought there was "Fast Pass" for Bay Beach?

It's still one of those things that I feel slightly weird or even guilty about using, even though it's clearly designed for us to use. I think maybe that's why we got a few more bumps after skipping the long bumper car line, but, hey, Teddy liked them.