A Whole New World

When people first learn about Teddy's diagnosis, a common response is, "I'm sorry." It's a natural response, especially when you're uncertain what to say, when you realize the impact of a disorder like PIGN-CDG. 

Yet that impact isn't all negative. While I don't sugarcoat the challenges, my response to people is that we have learned so much and experienced so many blessings because of his disorder. 

One of the most incredible blessings is to virtually connect with people around the world who share this diagnosis for their child(ren). This has made our world so much smaller and richer, as we've gotten to develop friendships with others walking a similar path ... though, trust me, our children don't really follow any particular path as they create their own ways. We've been fortunate to meet families on our vacations to spend time with other precious children with PIGN-CDG. It's always such an incredible experience.

Two months ago, I had the chance to travel to Europe to visit Germany and Spain. Several years ago I hatched the idea of taking my mom to Spain, as she didn't get to visit me when I lived there for nearly 6 months. Then I became friends with Marianne, a German mum to a little girl named Anna with PIGN-CDG. We quickly developed a connection, which made me realize that Germany isn't that far from Spain. So I changed our travel plans to include time in Germany as well. And then COVID happened, with the US shutting down return flights the date we were supposed to fly overseas. Our trip was postponed for 3 years, but it finally happened this spring.

My German was good enough to order our drinks the first evening. 

I loved Germany. I loved the food, the culture, the drinks, the scenery, the castles, the cathedrals, the monasteries that brew beer and the people. I loved the ease of using public transportation, the fact that people were so patient with my poor German but appreciated the efforts, the fact that people spoke English quite often and that you can walk everywhere. And the Barvarian pastries ... oh my goodness! I joked to my friend that I thought I was a pretty good baker (I own a bakery after all), but that I wasn't so sure after visiting their pastry shops. 

It was incredible to experience this culture and country, and I was especially appreciative knowing I likely never would have visited Germany were it not for Teddy's disorder. There's so many places I want to travel, and Germany wasn't on the top of the list until I became friends with Marianne. I'm so grateful for this blessing from Teddy's disorder.

The highlight of the trip was spending time with Marianne and her family. It is crazy when you meet another PIGN parent, no matter where you're from, the instant connection and familiarity with one another. It's so easy to interact with their children because we have such a similar frame of reference, despite the differences in our children's abilities or ages. Her daughter Anna reminded me of a younger version of Teddy, with some things so strikingly similar like their penchant to laugh when things unexpectedly go wrong like someone dropping something or tripping. (I think they'd both love the 3 Stooges!). 

The 4 of us went for a walk the day my mom toured Austria.

I think it's so good for us as parents to see others instantly connect with our affected children, not be afraid to talk, hold and help them. It's a level of comfort that's hard to have unless you live this life. In fact, my mom stayed behind with Anna who was napping while my friend helped me grab groceries on the first day. It was no big deal because she's spent countless hours with Teddy, so she was fine for the short time we were gone. (And trust me, on that first jet-lagged day, I appreciated the assistance in navigating a new situation.) 

So many happy hearts.

It was so bittersweet to leave, but we have hopes to meet again. We know how challenging it would be to fly overseas with our affected children, so they may never meet. But we hold hope that we can figure out meeting again in person in future years. 

It was such an incredible experience to have this trip with my mom. I'm so grateful for Dave for holding down the fort with the help of AJ and Bri. Things went remarkably well for my boys while I was gone, though all 3 of them required unexpected doctor's visits within the first 5 days of me returning to the States. Apparently they could hold it together while I was gone yet fell apart when I returned. ;-)