Summer Bucket List

It was a year ago that I was in tears, struggling with the transition for Teddy from the elementary school where he'd been for 6 years (5 with the same teacher) to a middle school that none of his elementary friends would attend. I knew it would be fine, but it was hard to say goodbye, especially with Sigrid there to fill us in on the daily shenanigans.

While it was a bit bumpy to get the school year started, I can confidently say that Teddy is rocking middle school with the support of his team. He has developed some great friendships that go beyond the classroom, and there's so much excitement to see his friends at after-school activities. He's made friends with his peers, and, of course, he's befriended his paras, teacher, therapists, nurses, and more. 

It's clear how much his team has learned about Teddy this past year - and how well our communication system is working with a non-speaking child - to see his summer bucket list. They absolutely nailed it!

This is perfectly Teddy!

Aside from missing a pontoon boat ride, this list is Teddy. It's a little thing, a bucket list activity that so many kids do this time of year, that captures the big, important things ... that his team knows him, understands him and cares for him.

Freundschaft

This month has been trying. Well, last month, since it's February already. Dave and I both have had work weeks from hell, we're juggling childcare and Teddy's been aggressive and mean toward AJ (more on that in another post). However, there have definitely been bright spots. One of those was my conversation this weekend with my friend from Germany, Marianne.

Marianne reached out to me via e-mail in 2019 after finding this blog when her daughter was diagnosed with CDG-PIGN. We instantly connected, sending e-mails across the ocean, learning about each other's lives and sharing our struggles and triumphs. Last year, we had planned to meet when my mom and I went to Germany and Spain. Unfortunately, that trip was cancelled as it was planned the week the United States went into lockdown.

The one positive that came out of those plans, though, was that Marianne introduced me to an app called WhatsApp that allowed us to text one another. We had planned to use it to connect when we arrived in Germany, but instead we've used it the past year to text one another, send pictures and whatnot. After two international zoom meetings in January, Marianne and I decided to schedule a "date" to video call one another through WhatsApp.

So this weekend, we spent more than an hour chatting with her excellent English (and my non-existent German despite 125 days of Duolingo practice). AJ got to give her a tour of the LEGO room, and Teddy stole my phone multiple times to smash his face to the screen and hold the phone up to his ear. It was so wonderful to actually connect that way and was the first of hopefully many actual conversations.

As a child, I always dreamed of international pen pals (back when you wrote actual letters). Now, thanks to my rare son, I have friends around the world. Those connections make our world smaller and make our days brighter. They share our burdens and our joys. 

CDG-PIGN Around the World

One of the reasons we started our blog was to put something positive, yet realistic, into the world when we could only find a few depressing clinical research papers on Teddy's diagnosis. We wanted others who searched for MCAHSS1, CDG or PIGN to find something that provides hope and an opportunity to connect. We knew how much it meant to us when we connected with the first family with Teddy's diagnosis a month after we first learned the news. That e-mail allowed us to find the Facebook group, which has become our community. Instant friendships were made there, bound by a common disorder that is anything but common.

That Facebook group started so small, with only a handful of children who I knew all by name. In the past few years, we went from adding 1 child a year at most to several in a month at times. Candidly, it's gotten hard to keep track of all the children and families in our group, but we now have more people who share their experiences and help one another.

When a family from London reached out after finding this blog, they wanted to do a phone call. Rather than figure out international calling, we simply did a zoom call. And the lightbulb clicked. We could do a zoom meeting with our CDG group to connect families from around the world via technology. There was immediate interest from the group, so less than a week later we hosted our inaugural CDG-PIGN virtual gathering. 

Oh my goodness! It was absolutely incredible to see and hear these other families from around the world. We got to see a few of the children who are affected, and I couldn't not act like a giddy schoolkid waving at each of them. There are few instances where others nod in agreement when we share stories about Teddy, not just understanding but actual real-life experience that was the same. 

Oh, you know, some of my closest friends from around the world. 

We had families from Poland, Australia, Germany, the Netherlands and several from the United States, including families that moved here from Poland and the UK. It was a bit of a challenge to find the right time to do an international gathering, but we settled on 2 p.m. our time. Our Australian friends joined us at 6 a.m. and our European friends ended the call with us at 10:30 p.m. (Yes, we chatted nearly 1.5 hours!). The conversation flowed in English remarkably well, interrupted by a spontaneous breakout in Polish. That breakout simply made us all smile because it was so neat to see the connection, to be heard and understood by someone who simply gets it ... in their native language. 

We plan to schedule another zoom meeting next month and will likely continue monthly as long as there is interest. This gives us an opportunity to share what works for us, to problem solve, to ask questions and to learn from one another as we truly are the best experts on our children and their diagnosis. It allows us to leverage specialists from around the world on how to best help our children thrive. But, equally important if not more important, is the ability to connect with others who inherently get it. Trust me, we have amazing family and friends who provide an incredible support network for us. And those who interact with Teddy regularly understand so much of our life, but there's nothing quite like talking to other families who are walking this same extremely rare genetic journey. 

It's a Small World

As I alluded to in my last post, we often have an instant connection with other families whose child or children have CDG-PIGN. Each of our children is incredibly unique, yet there are so many commonalities ranging from sleep struggles to heart-warming smiles. We've discovered that many of our children sound similar, walk or move in nearly identical ways and other common threads that are tough to find when your child is like no one else in your community. 

Thankfully the Internet allows us to connect with others across the world. One of the first families we met on our PIGN journey is from Poland. The mom is an incredible advocate for her daughter who started our Facebook group that has brought so many others into our world. We often get a beautiful Christmas card from Poland (specifically addressed to Teddy, of course) with snippets of Polish and English translations. I will say, once again, how impressed I am at how well others can communicate in English. But that's another conversation on how Americans, in general, lack the language skills many other countries foster.

This card is like a hug from Poland.

This is about gratitude that Teddy's diagnosis has made the world smaller, connecting us with others around the world who I consider our PIGN family. We've met a handful of these families and have high hopes to meet others. There's two little boys in New York that I would love to see interact with Teddy because I swear one of the boys is his brother from another mother. Then there's the two older boys in Florida that I'd love to meet as a glimpse into what the future may hold-I'm only mildly jealous Dave got to meet them in February. Oh, then there's the little girl in Germany who I jokingly call my German goddaugher. And the family in Poland. As you can tell, in reality, I'd love to meet as many of these children and families as possible. 

For those we've met, there's an instant comfort and understanding. There's no need to explain our children or apologize for their unorthodox behavior. For me, there's often a sense of awe as I marvel at the similarities or creative solutions other families find. So, when we can travel again, we'll continue to reach out to meet up with those along our path.

For now, we treasure these Christmas cards and the friendships that span languages, countries and oceans because of the common thread of a variation on a single gene that alters lives and forges friendships. 

Get in Line

I'm glad my mom was in town last night. She popped over for a quick, purely social visit instead of me abandoning her to watch our boys, which is usually the case. She arrived in time to head to the weekly MyTEAM Triumph training run with Teddy and me. My mom's been at two of Teddy's races, so she's familiar with MTT. Last night gave her the opportunity to witness firsthand how amazing this group of people is.

Teddy's angels are the folks in the neon green and bright blue shirts.

I was planning to run with Teddy, which is usually the case. Instead he ran with two of his angels from the Oshkosh 5k, a husband and wife duo. That gave me the opportunity to (nearly die because my co-angel flies faster than me) spend time with another captain. We were the first team back, so I got to watch Teddy's angels run him back to the meeting area. I heard the woman say that she got to hold his hand for half the run because he kept putting his hands on the wheels. It wasn't a complaint. It wasn't "I had to hold his hand. He's really not safe." It was, "I got to hold his hand."

Then, after Teddy's angels complimented Teddy's smile and his personality, they asked if he already has all his angels for the Bellin Run, the next run he's doing. I explained that his running buddy from Michigan from I Run 4 is coming to be his angel, along with her husband. Someone else joked that they'd need to get in line.

After I shot them down on that opportunity, they asked if he liked bike rides. They said they'd love to take him for a bike event if we thought he'd enjoy that. Unfortunately, the bike event they had in mind is when we're on vacation this summer, but how amazing to want to include Teddy in something that isn't even a MTT event!

The icing on the cake was when I finally pulled Teddy away from the large truck that stores all the race chairs. (Well, that was the worst part of the night for Teddy. His highlight was when I finally let him explore the truck after the training run.) When Teddy's angels saw how much he liked the truck, the guy asked if he liked all big trucks, including fire trucks. He said that when his work does their open house this fall, we could see about getting Teddy to come through if it worked for all our schedules.

Me blocking Teddy from the truck. He was determined.

This is exactly what MTT is about. It's not just racing and competing and giving our captains the opportunity to fly. It's about building relationships with others and helping those with disabilities become more fully included in their communities.

But if you want a shot with Teddy, I guess you have to get in line. He's a pretty popular dude.

Except when I need someone to watch him while I'm working or out of town. Then my mom somehow gets that first-in-line spot. ;-) Thanks, Mom!