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.