Running & Relaxing

Let me preface this by saying there is very little relaxing about running when it's 90 degrees pushing 90 pounds. 

But it is relaxing for Teddy to be pushed, especially along the riverfront where there is an endless stream of boats. We also detoured to the train bridge and got to watch a train go past, and then walked an extra half mile at the end to avoid the mean seagull that was dive bombing us and almost pooped on Teddy. Jerk pigeon. 

 Teddy had a rough listening day and ended up with hurt feelings, timeouts and not nearly the fun he could have enjoyed. So I took advantage of a group run with Running Water City to change his mood and ensure we both had some form of fun tonight. Again, it's a twisted version of fun for me, but it was worth it to allow him to enjoy the time out and about and for both of us to enjoy the patio at the brewery afterward. 

Fifth Ward is my favorite brewery, and I actually got to sit for about 15 minutes at the table while Teddy chilled with his popcorn until he decided the couch looked like a better seat. He tried to invite my friends to join him, but they couldn't "hear" him looking at them and pointing at the couch. So he had to go back (after about 5-10 minutes of trying) and physically show them what he wanted.

Someone was very happy to be at the table with his popcorn.

Thank goodness for friends who enjoy Teddy's company, who rebuckle him in his chair, who grab popcorn for me, who walk back to our vehicle with us and buckle him in and just make it as easy as it can be to enjoy a post-run beer with Teddy.

Happy 10th Birthday!

Happy birthday Teddy! 

While I'd love to write a beautiful blog post, I'm exhausted. So here's a recent photo of the birthday boy, and I'll reminisce another day.

That smile. 

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.

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.

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. ;-)

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!

Fourth Grade Finished!

Teddy's officially a fifth grader. I can't believe next year will be his last year at Franklin Elementary School. I won't lie. I was devastated when he went to Franklin because I had envisioned both my boys at the same school. I desperately wanted AJ to be there to advocate for Teddy, to share about the snippets of his days and just to be a familiar face.

Fast forward to now, and I know I'll be devastated when Teddy leaves Franklin. He has so many who advocate for him at his school, so many who include him and welcome him with open arms (until perhaps he starts rolling up in their blanket fort and chewing on their blankets, which is understandable), so many friends who say hi to him randomly in the community and invite him to fun parties and so many who share snippets of his days. I swear just about everyone at Franklin, kid or staff, knows Teddy. 

This 5th grader is ready for a summer of baseball fun!

At the end of the school year, we asked his team to sign a book for him. I think he came home with 6 or 7 new notes. The most common theme was Teddy's smile, how much joy it brings and how he makes others smile. The second most common phrase was "keep me on my toes." Both are so true of Teddy.

We're so grateful for an incredible team that includes so many people:

• His teacher
• His 4th grade teacher
• His OT and her assistant
• His PT
• His speech therapist
• His nurse
• His nurse assistant, who administered his meds daily
• The incredible group of paraprofessionals
• The student teacher (Teddy taught her well I imagine)
• The tech person who supports his device
• And all the others who keep him safe and include him

It's been a good year, and now we're ready for summer! But where's my team to keep him safe for summer?!?!? (More on that to come in a future post - it's been an adventurous first week of summer.)