I Can't Imagine

This past weekend we had the opportunity to connect with a number of other PIGN families across the world (OK, mostly the US this time, but we had Northern Ireland represented as well). It's always so uplifting to spend time with our community, sharing successes, updates and questions. 

I did shared that in recent weeks I had commented to Dave that I don't think it's a coincidence that 4 of us PIGN moms have been diagnosed with cancer in the past 2 years. I made the comment that these kids are killing us, joking but not completely. And another mom chimed in with her story about her autoimmune disorders that began after her first child with PIGN, echoing that the chronic stress takes a toll on our bodies. After listening to the recording, one of our Italian moms said it so well, "I agree with you that we give life to our children by taking life away from ourselves." 

This community gives us a chance to talk about the blessings, and the challenges, of our lives. Each child with PIGN is writing their own story, so each set of challenges look a bit different. I often hear of the hospitalizations, the failure to thrive and the medical marvels required to keep our more medically fragile children alive and wonder how on earth their parents do it. I see our single parents managing this all on their own and am in awe because even with strong support in each other, Dave and I still struggle. Yet I hear the mom who's lost a child to this disorder and who's nearly lost her other daughter 4 times this year say, "I can't imagine!" when she considers how hard it is to parent Teddy because he's so active, mobile and can get himself into so much trouble. 

Trouble? This kid? All. The. Time.

If you're wondering where I'm going with this, I think it's the realization that each of our journeys is ridiculously, insanely hard. It requires constant giving, constant sacrifice by all members of the family. It requires life looking so much different than we ever thought. It means that the simple things aren't simple. (Heck, trying to stop by a bowling alley to say hi to friends yesterday involved almost barging into a pool game and stealing their balls multiple times (but getting a kind high five in the process) and inviting ourselves to sit down and attempt to steal another woman's newly delivered pizza.) It doesn't matter how much or little speech our children have. It doesn't matter how many seizures they have. It's all hard. One version of hard isn't worse or better than another.

Yet, in the grand scheme of things, we'll always take this hard because it beats the alternative. We know the alternative is not having our children on this planet. We've mourned with those families who've experienced that loss, and we know they'd give anything for one more sleepless night, one more day (even if spent in the hospital) or one more panicked moment of "temporarily misplacing" their child when they elope. 

The things that are normal for our family are not normal for society. But we've built a community and have found wonderful humans in our community who accept us as we are, whether that's for the brief moments we interact or by becoming a part of our tribe. And community helps us handle the things that no one can imagine that are reality. 

Ice Caves - An Adventure!

Eleven years ago, Dave and I had the opportunity to visit the Apostle Island ice caves. It was a whirlwind trip with lots of hiking, stunning scenery and two magical days that we still fondly remember. In fact, just the other month we were talking about how incredible the ice caves were and how unlikely it was that we'd ever see the ice caves again because it takes very specific weather conditions ... so specific that 11 years ago was the last time the ice caves were open.

When I stumbled on the news that the ice caves were planning to open February 16 this year, Dave was at our land with no Internet/cell service. So as he was driving the 3 hours home, I mentioned to him that the ice caves were opening the next day. And, within the next hour, he booked a hotel room, we called the boys in for school on Monday, and we both took a spontaneous day of PTO. I spent the next 2 hours frantically packing all our gear with AJ's help, and we headed out for another 4.5 hours of driving when Dave got home to get to Ashland. On the way, we got to stop for a quick supper with our sister-in-law and two of her kids for a fun break.

Teddy was very excited about this adventure and quite insistent that he wanted to go (as in he tried packing himself in the suitcase). He was excited to go swimming at the hotel pool and especially enjoyed the hot tub, which was necessary as we then had to walk outside to get back to our room. Sleeping in hotel rooms with Teddy is always a gamble, but he settled down by 10 and slept until 5 a.m. In Teddy's world and hotel rooms, that's considered a win..

Plus, we were heading out early to finish driving to the ice caves, so a 5 a.m. wakeup wasn't the worst thing. By 6:30 a.m. I was packing our vehicle and bringing our surprise visitor, my dad, into our hotel room. That's right, when we do crazy adventures, we extend the offer to others. He was crazy enough to get up at 3 a.m. to meet us that morning.

This year was strictly shuttles to the trailhead, so we headed to a shuttle area in hopes of finding a park ranger. When we couldn't find one there, we headed to the trailhead to at minimum drop off Teddy's adaptive wheelchair. Fortunately, the rangers there allowed us to access handicap parking, which was exactly what we needed to make this adventure possible. 

We were able to get all our gear together, carry his chair down to the beach and be the first trekking the mile or so out to the caves. It was so foggy that we were picking our way along without being able to see much ... not that we could enjoy the scenery at the start because it was a slog to push Teddy's chair through the snow on the beach. Fortunately, after about a third of a mile, we found a more packed snowmobile path on the ice, and it was much smoother sailing from there! 

We were still among the first group of people to the ice caves, and they were just as incredible as we remembered! AJ was enamored in taking photographs and just in awe. Teddy would have spent all his time playing in each and every cave if we let him, though he spent most of the time in his chair go see all the splendor with breaks to get out and play. 

Teddy walking under a bridge of ice.

We all made it probably about 2 or more miles out on the ice, and then AJ and I finished the last of the trail as it wasn't compacted enough to manage Teddy's chair. In the time we were gone exploring, Teddy got to enjoy more of the caves and even found a photographer friend for the Milwaukee Journal Sentinel (https://www.jsonline.com/story/news/local/wisconsin/2026/02/17/apostle-islands-ice-caves-closed/88716758007/ He's the 12th image in the gallery.)

It was truly a magical day, honestly a once-in-a-lifetime experience to witness these wonders with my dad and the boys. It's unlikely that even if the caves open again that we'd be able to make the trip and schlep Teddy through the snow, so this was his chance to see and experience them. It was so special to experience the caves with Teddy in a way that we both love ... crawling and sliding and scooting through the ice caves. And it was just as special to trek to the end of the formations with AJ, seeing his awe and love of photographing the beauty. 

AJ got to see a lot of cool formations!

The trek back was a bit tougher as most of our crew was sore and a bit tired, but it was well worth it. And, honestly, I was just so darn glad that we had compacted snow for the entire trek back instead of the loose snow we had on the start of the hike that I was literally jumping for joy. As we were getting off the ice, we had a ranger comment, "That's the best thing I've seen all day!" in reference to Teddy's chair and our ability to bring him to the caves. We tag-teamed getting Teddy and his chair up the stairs. My dad joked his favorite part of the day was the last 2 steps as he helped Dave carry the chair. 

And then we had a 6-hour drive back home. It was worth every bit of the drive, every amount of effort pushing a chair through snow and all the catch up that we have from spontaneously taking this whirlwind adventure. I commented to my friends that it was well worth cancelling life to do this, and then I realized that what we did was far more important than a day of school or a day of work ... it was 32 hours of making core memories, living in the moment and enjoying the wonderous world in which we live with the people we love. 

We're so grateful for the opportunity to do this, especially since the caves were closed again the next day with no certainty as to when they'll reopen. We definitely lucked out with the accessible parking as that made the adventure possible (and so much easier than leaving a chair and backtracking to a shuttle or splitting our group to have some stay with the chair and the rest shuttle). It wasn't easy, but it was absolutely worth it. 

Nature is pretty darn amazing ... and pretty.

Winter Adventures

Its's been a freezing cold winter, and I swear the 10 days have all been sub-zero. We've had school cancelled due to the cold, Teddy home sick 3 days for 2 different illnesses, and 2 planned days off school. So this beautiful poem was still ringing true ...

But today was finally above zero the entire day! So we got plenty of fresh air and getting rid of some of our stir craziness. 

We started the day with Teddy's second skiing lesson! He remembered so much of what he learned last time and was building off that with more work on turns and learning to feel his edges. His instructor Eric was absolutely amazing with him yet again - he's beyond incredible! We also had company, as my dad and aunt drove 2 hours to come watch his lesson, and Dave stopped by on his way to the land. My family really shows up, and it means so much to me (and clearly Teddy!). 

Look at those smiles!

This afternoon we tried something new ... ice skating! And Teddy loved it! We're pretty lucky that we have a little ice skating area at our local park with free skate rentals, so it was an easy way to try something new. We didn't stay on skates super long because he got tired within a half hour (understandable!), but he was wanting to go back again before we even left. So perhaps we'll make our way there again tomorrow afternoon. Ice skating is actually also really good for him to practice for skiing, as it mimics that glide action for moving skis. Plus, so many people are wobbly like baby giraffes on ice skates, so Teddy kind of blends right in with the rest of the folks holding on for dear life.

First time on ice skates, and he loved it!

Days like these remind me why we enjoy living in Wisconsin. Great people, supportive community and fun winter hobbies. 

Then and Now

Know how people recreate childhood pictures as adults? We did a version of that this Christmas, reliving the memories of a Christmas past.

Look at those adorable little kids.

Oddly enough, my dad was more willing to recreate this picture than to wear my Santa shawl as festive outer wear on our bowling outing Christmas day.

We had a bit less real estate to sit this year, for some reason.

Needless to say ... I don't see us being able to do this again. 😄

Adaptive Skiing - An Incredible Success

Last fall, after talking with another special needs' mom about her son's experience with adaptive skiing, I asked Dave what he thought about me signing Teddy up for adaptive skiing. He responded with 2 things:

1. I want nothing to do with it. (This is less about Dave not skiing than about not wanting anything to do with a risky sport that could result in broken bones.)
2. There's someone at my work who does this. Do you want me to get more information from her?

That's about as much of a green light for this project as I'd get, so I ran with it. Kelsey volunteers with SouthEastern Wisconsin Adaptive Ski Progam (SEWASP). She was incredibly helpful, and I worked through the process to sign Teddy up for adaptive skiing. I requested what's called a bi-ski, where Teddy would sit and be skied down the hill by volunteers. This is most similar to his waterskiing experience, and it seemed like the safest, easiest option considering Teddy's intellectual disabilities and the fact that his listening ears are often broken.

However, SEWASP wanted to assess Teddy for stand-up skiing based on his physical capabilities and had an opportunity to partner with a new ski hill that happens to be the closest to our home. That ski hill, Nordic Mountain, is working to fully build out their adaptive skiing lessons into a full program. So Teddy's assessment and lesson would benefit Teddy and serve as a training opportunity for the team at Nordic. 

I'm not going to lie. I was nervous. I don't want Teddy to get injured because that requires a tremendous amount more effort to care for him. I also was concerned about Teddy following directions and being able to do what was expected. And then there's the wildcard with Teddy that some things simply freak the heck out of him, and he shuts down. I thought between skis, magic carpet rides and/or lifts that there was a high risk of him shutting down or getting freaked out.

We did our best to prepare for the day thanks to YouTube. Teddy does really well watching simple videos on YouTube to help prepare for new experiences or things that are harder for him (like the dentist). My dad came over for morale and physical support for the Ted-venture, and we headed to the ski hill this morning, bright and early (with Teddy unnecessarily up for the day at 4:30 a.m.) and chilly (temps at 0 when we started). 

And, my fears were promptly reality as Teddy immediately wanted back in the vehicle and refused to even walk to the buildings to get started. I headed up to tell the team that we were working on convincing him, but he was anxious. They came over, friendly faces and encouraging welcomes. Their approach helped me convince Teddy to go check out the warming yurt at least. We spent the first 30 minutes or so with them assessing Teddy's walking, getting to know him and working our way into ski gear. The level of skill in their assessment, what they see and how it translates to how they'll help him learn to ski is nothing short of amazing. Dave and Terri with SEWASP are experts at what they do (with Kelsey being a great support). The team from Nordic (Kyle and Eric) were eager to learn and also not without experience in working with adaptive skiing. It's exciting to hear about the program they're developing and what is to come in the next year.

As we worked through each step, I made sure to capture pictures because getting ski boots on was a milestone in itself. (Seriously, have you ever tried to walk in ski boots?!?!) We headed outside to practice sliding and introduce the skis themselves. By the time we got to ski boots, Teddy was all ready to go and excited for the process. 

The team started him with a pole for balance, which they quickly transitioned away from to less invasive methods of support. They are intentional about making it a good, safe experience but in encouraging as much independence to build good habits as possible. The amount of analysis, awareness of Teddy's abilities and fatigue levels and potential options to support him with both equipment and technique were amazing to hear and see. 

If you've ever skied, you likely know about pizza and french fries, the American way to teach people how to ski with straight skis and to wedge to slow down. They decided Teddy is not a candidate for pizza because he'll always try to pizza and end up with crossed skis, so the alternative is to focus on learning gradual turns to slow down. They helped model that, physically turning his skis for him to kinesthetically feel the turn and had him working on assisted turning his last couple runs. 

My expectations for today were pretty low and realistic. I didn't know if he'd even make it on the ski hill and had fully expected him to have hands on support and/or be strapped into a harness to support him. They see so much capability in Teddy, not his disability, and helped him successfully ski down the (very tiny) beginner hill partially with no hands-on assistance. The range of techniques they used, the way the instructor Eric "fell" right alongside Teddy and cheered him for doing such a great job falling to make it fun and easy to get back up again (as easy as it is on skis) and the enthusiasm and positivity from the entire team made this morning downright magical. 

It was also clear from the smile on Teddy's face, the way he immediately started heading back to the magic carpet and his frequent asks to go on the chair lift (wish not granted this time) that Teddy loved the experience!

I never would have guessed before I saw it with my own eyes today that Teddy is capable of this. His listening ears were on point, his focus and his effort were all nothing short of amazing. We could see the signs of fatigue, so we called it a day after a little more than 2 hours. As we were getting ready to leave, Teddy was ready to put his ski boots back on and go out on the hill again! Though his body was tired, he still wanted to go. 

I'm so excited to take Teddy back to the ski hill for him to have more lessons and continue this! 

So happy as he finished his first run!

For the life of me, I wish I could share the videos, but I can't get videos to upload lately to my blog. 

Naughty Versus Nice

I swear I was good this year, but apparently I made the naughty list. And somehow, miracle of miracles, Teddy made the nice list?!?!

That must be the case because what else could explain Santa bringing this to our house for Teddy?

Not-so-little drummer boy.

Yep, that's right. Santa brought Teddy a full drum set. 

Santa, aka Dave, saw how darn happy and content Teddy was at Thanksgiving playing the drums at my aunt's house for several hours. We've never really spoiled Teddy for Christmas, and, honestly, he's gotten very small gifts several years because there's been nothing we could think of that he would enjoy much. But Santa made up for that this year. 

Pure joy in the form of non-stop drumming. Don't worry, he took turns and made everyone play the drums. While they've lost a bit of their luster (literally and figuratively) in the past week, they are very much loved by Teddy. We know that every new visitor to our house will be shown the drum set, given a performance and then a lesson in proper drumming according to teacher Teddy. 

Last year felt very much like getting through Christmas was the goal. This year, I think we all felt a bit of joy. 

Holiday Happiness

This year has brought so much more joy than last year, which was, quite simply, hard. It's been so good to enjoy the holiday season with less sadness and tears, to read our story a day until Christmas, celebrate St. Nick's, head to multiple holiday concerts, and decorate with our big kids. 

Yes, AJ is taller than me.

St. Nick brought us ugly Christmas sweaters. The great thing about the boys getting older and bigger is that now I can steal their clothes, so I have even more holiday sweaters to wear! (The downside is I can never find my clothes because they get sorted into their drawers!) St. Nick even brought all our big kids holiday sweaters, which will make for hopefully some fun holiday pictures.

We also continued our 3rd year of Christmas baking and decorating with the big kids. It makes the double batch of peanut butter balls go much faster with more hands, plus Teddy is all in to hang with everyone else. We always have lots of laughter and end up with goodies made for us to enjoy (as much of my baking in December is for the bakery until I get through my last farmer's market). 

Teddy worked on that peanut butter ball for 45 minutes.

It's not the presents or the gifts that matter, but it's the presence. The time spent together with family and friends who become family. The laughter, shared stories and ability to lift each other up. We're so grateful that Teddy's care needs have helped us build this incredible tribe. 

Our cookie and candy crew is all smiles (and aprons)!