A Day to Lift Our Hearts

Ever since Teddy set eyes on the ski lift at his first downhill skiing lesson, he's had big dreams of riding the ski lift. Each lesson, he asked to go on the ski lift. And while he made incredible progress skiing last year, the ski lift is a goal for this upcoming ski season. (Hey, we need something to look forward to now that it's dark outside by 5:30 p.m.)

When we were on vacation this spring, he was insistent we should take the ski lift/tram to the top of Gatlinburg. While I seriously considered it, the price tag was steep, and it was close to closing time, so we didn't take that opportunity. (And after seeing the suspension bridge at the top of the mountain, I'm quite certain neither of our boys would have ventured onto it, which was the highlight of taking the lift to the top.) 

So when I saw friends posting about seeing the beautiful fall colors from Rib Mountain, it was the perfect opportunity to take Teddy to experience the ski lift. We met up with my dad and uncle for the afternoon (after a fun 5K run that morning) to take the ski lift to the top of the "mountain." 

It didn't dawn on me until Teddy sat in the trial chair with my dad and uncle that ... oh crap, there's no seat belt and no way to contain him. It's probably a good thing I didn't consider this sooner or my anxiety would have been much higher. Instead, I only spent the ride to the top contemplating if I could hold all 111 lbs. of Teddy if he were to slip out of the seat. 

All smiles as they test out a ski lift chair.

But the anxiety was worth it because he was so freaking excited! He normally is bouncing for joy when he sees his grandpa and especially great uncle, but this day was all about the ski lift. He bounced his way to the ski lift and was all grins after he processed that his dream was actually coming true.

We spent some time at the top, including climbing the fire tower. Fun fact - most people enjoy the view at the top after all those stairs. Teddy is more of the belief that the journey is the destination and that you turn around at the top and hightail it back down. Teddy did enjoy scrambling on some of the rocks, but he was motivated to head back to the ski lift.

On the way down, we positioned the bar between Teddy's legs, which gave me much more peace of mind. That's good because we did a second loop to enjoy the views, and he got a bit more squirrely. 

He was busy processing that his dream was coming true.

I hadn't realized this was on my uncle's bucket list, so it was really memorable to spend the afternoon with him and Teddy with their special bond. The ski lift was everything Teddy dreamed.

And ... I'm really glad his winter ski lessons will include a special seatbelt when he finally makes it to the ski lift there!

Family Photos

Many people hire photographers for their family photos. They coordinate their outfits. They do their makeup. They look their best.

Us? 

Well, we throw the camera on the tripod at our land and center it on the tractor that holds the most people. We make sure everyone is wearing clothes that mostly match (each person individually, not the whole group). We may or may not have showered in the last 24 hours, and there's no makeup in sight. And we laugh and rotate through the many combinations of people we love, only 4 of whom are related by blood. (Unfortunately, we were missing our "adopted" son this year because he's lame and made plans with friends instead of us.)

Me and my girls.

Dave and the boys, including the other halves whom Teddy adores.

The whole family, including other halves, minus one adopted son.

Our family, minus our adopted son. 

Our core family of four.

All the kids together.

Homecoming

AJ celebrated homecoming this past weekend with friends including playing in pep band for the football game and going to the homecoming dance. It definitely feels real having a high schooler when they're getting dressed up for pictures and heading to a dance!

I also saw pictures from a couple friends in other states whose children were celebrating homecoming as well and loved seeing what inclusion looked like for their high school freshman. It already has me thinking about what to ask and how to advocate to enable Teddy to join the fun at homecoming and other dances because he's a social butterfly and loves dancing!

One of the things I enjoy most about AJ's group of friends is how chill they are with Teddy and how much he adores hanging out with them. He has his moments where he's seeking sensory input by kicking his feet against them as they're all flopped out gaming, but for the most part, it works out well most of the time. It makes my heart happy to see both my boys happy.

Can you tell how much Teddy likes to join in the fun with AJ's friends?

Oh, and a random sidenote, Teddy got his face painted this weekend as well. He did really great sitting for it, and the local celebrity face painter Whimbubble was amazing with him! She did such a great job talking through the process and engaging with Teddy the entire time. 

Teddy shark!

Boats, Boats, Boats

Teddy loves boats. Like most things, this is both a good and a bad thing. It brings him great joy when he's able to ride in boats, and he enjoys seeing them and it leads to fixation and frustration at times when the elusive boats are off limits to him. 

Such was the case a couple years ago when our neighbors got a pontoon boat that had to be stored in their driveway for a month or two before they could get a dock slip. Teddy was OBSESSED. He woke up early, ran downstairs and tried to escape to the boat. He'd sit and stare out the window for hours at the boat. He didn't want to go to bed because there was a boat outside. He started clapping the minute we turned on our road because his boat was in their driveway. 

Needless to say, their boat was the bane of our existence for those weeks. And since we're friends with them, they knew it and heard many a joking comment about it (except we really weren't joking every time). Since then, the boat has only been at their house periodically, and Teddy gets just as excited. It's more manageable when it's a couple hours or a day, not a constant torture.

Our neighbors asked several times last year if we were home to go for a boat ride, but our busy lives never connected. So it remained on my goal board for this year, and Teddy's dreams came true the other week. 

Pure joy and giggles for most of the ride!

We're heading into fall here in Wisconsin, which means you never know exactly what the weather will feel like because 60 degrees could mean shorts and a tank top or it could mean long pants and a sweatshirt, all dependent upon the wind, sun and clouds. Our boating day happened to be the sweatshirt side of life, with light sprinkles of rain when we started. 

Thankfully, that didn't deter our neighbors because it certainly didn't deter Teddy's joy. As our friend said, "Teddy is certainly the most excited person to ever be on our boat." His sheer love of the moment is contagious, which meant we all had a great time puttering out on Lake Winnebago a bit and checking out the river to Lake Butte Des Mort. Teddy and I often run and walk along the river because it's great boat watching to entertain Teddy, but we've never been on the water. So I loved seeing everything from the water, especially our Oshkosh murals. 

Captain Teddy even got a turn at the helm.

We're so grateful to have such great neighbors ... in so many more ways than this. But to take several hours out of your day on a Packers Sunday in kind of lackluster weather to bring pure joy to Teddy is pretty darn cool.

Teddy with his favorite of our neighbors ... at least at that moment!

Camping in a Tiny House

One of our favorite things to do as a couple was camping when we first got married. We camped in a tent, dreamed of becoming campground hosts when we retired, and loved exploring our favorite places and new places with our camping gear. When we added kids to the mix, we were excited to introduce them to one of our favorite things and spent the first several years with kids dragging them across the country camping most of the time, with an occasional hotel stay to shower and do laundry on our 2- to 3-week adventures.

As Teddy got older and bigger, it became harder and harder to camp. His ability to sleep anywhere aside from our home (and even at our home) was a challenge, often up until midnight with mornings as early as 4 ... or even one horrible 2:30 a.m. wakeup for the day. The feasibility of putting all 4 of us in a tent, which Teddy could escape, began to sound like a form of torture rather than fun. 

That's why we ended up with our land to give us a place to explore the outdoors, spent time doing things we love outside and have a consistent routine and place to sleep where Teddy could get comfortable. I couldn't tell you the last time we actually camped with the boys ... possibly 2017? 

But this week we ventured back to one of our early marriage favorites, and one of Dave's childhood favorites, to visit Porcupine Mountains State Park in Michigan. We rented a tiny house cabin right on Lake Superior in the campground for 2 nights. It's an adorable, fully accessible cabin that made it possible for us to enjoy "camping" again. 

Our tiny house had 2 full-size beds, a perfect spot for a family of 4.

Now, that's not to say it was easy because rarely are things easy with Teddy. We still had a rough bedtime the first night, and he kindly woke us up for the sunrise each day (Dave got one morning, and I got the other.) But he absolutely adored the tiny house, so much so that he yelled at us for 30 minutes when we left for the day to go exploring. He scampered into the top bunk and holed up there with AJ in blankets and pillows, giggling nonstop. 

Dave kindly helped AJ as his suspenders while AJ pushed Teddy uphill to the observation tower.

He also protested several of our planned "hikes" if you can call the less than a mile trails that, with more flops and drops than usual. But despite that, we managed to see waterfalls, play in Lake Superior and do 2 family hikes to Nonesuch Mine and to the observation tower. It's really neat to see Teddy embrace being a kid at the beach, scampering up and down the shoreline, digging in the sand and running full force into the water, not realizing Lake Superior tends to be a bit chilly. 

Lake Superior is a great lake, that's for sure!

All in all, I'm grateful for this beautiful accessible cabin. I'm grateful we got to revisit places we love. I'm grateful for the family time and the memories. And, I'm grateful for our own bed when we returned. 

We Officially Have a Screenager!

Happy 13th birthday to Teddy! 

Wow, it's hard to believe Teddy is 13. When we got his diagnosis back in 2015, we were given research papers with a life expectancy of 3 years ... and our baby boy was 2.5 years old. So birthdays are always a bit of extra celebration because we keep smashing that outdated research paper and writing new, more realistic and much more hopeful stories for those families who come behind us. 

But through the years birthdays have also been bittersweet, especially in the early years, and I know we'll have hard ones to come as well. So often it was tears when searching for presents, the hard reality that the things Teddy could enjoy were baby toys instead of age-appropriate toys. As the years have passed, the ability to appreciate Teddy for who he is without those milestone comparisons has come easier. Honestly, some of that ease comes from the lack of pressure to have the perfectly decorated cake or to buy a gift equivalent to what we'd do for AJ and just do what comes naturally that Teddy will enjoy.

This was before he ran off to take someone to play ... mid song.

More than any gift or cake, Teddy's favorite part of birthday celebrations is seeing all his favorite people. No matter how many people are already here, he literally jumps for joy with each new arrival and drags them off to play with him. Trust me, there's enough Teddy love to go around for everyone!

Teddy has lots of ideas for for everyone to play!

This year's birthday party was a wonderful day filled with family, best friends and adopted family. The cake was a huge hit - Teddy intensely devoured the peanut butter cake he requested. The water fight with squirt guns was a fun summer treat. We got to enjoy family card games of sheepshead while Teddy played with his victims, I mean chosen people. (I say victims because at one point he had AJ stuffed in a tunnel, tied to a gigantic Teddy bear that's bigger than AJ and covered in blankets ... all at the same time.)

And, there was only one trip to the ER. It was for stitches, not seizures. It was for Dave, not Teddy. So that's a definite win, and now I shall be buying Dave safety scissors for Christmas as the first gift to open all the rest of the presents. 

His future is so bright everyone needs to wear shades.

 

Be Like Max ... or AJ

It's been more than a month since AJ's promotion ceremony at the end of school. This post may be a month late, but I'm no less proud of AJ now than I was then. AJ was one of two recipients of his class of about 140 to receive the Be Like Max Award ... or as I like to call it, the good human award.

Max was a student who graduated 8th grade in 2017 (I believe) who made a lasting impression on his classmates, teachers and staff. He always had a smile and a kind word to say to everyone. Apparently they did a Be Like Max Day and had the entire school pretty much decked out in shirts to support and honor Max.

When Max left Carl Traeger Middle School, a Be Like Max award was created to honor 1 to 2 special students each year who embodied the best qualities of Max: kindness, caring and empathy. The recipients are chosen by the entire staff, and they chose AJ.

Look at my good human!

AJ's literacy teacher gave a beautiful speech on why AJ was selected for this award, and I'm so darn proud of this kid. While I gave him a bit of crap about his teacher joking about what his parents do to raise such a helpful kid and said perhaps it was really our acceptance speech, it's all AJ.

No doubt, being Teddy's big brother plays a role in AJ being a kind, caring and empathetic human. He's been helping since Teddy was born, doing more than most kids do to help their siblings and enduring more doctor's appointments, therapy appointments and medical trauma on behalf of his brother than many kids. He's spent 14+ years wishing for his brother to speak. (Seriously, he's asked Santa for that as a child, and it's still a wish in his heart.) He's always been so empathetic, so thoughtful and so wise beyond his years. 

While we want AJ to do his best, reach his full potential and thrive academically and in the activities he chooses, being a good human matters most. At the young age of 14, he's already there. 

So darn proud of this kid and can't wait to see what he continues to do in life.