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| Teddy walking under a bridge of ice. |
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| AJ got to see a lot of cool formations! |
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| Nature is pretty darn amazing ... and pretty. |
This is our family's journey with the rare PIGN genetic disorder Multiple Congenital Anomalies-Hypotonia-Seizures Syndrome 1. When our son was diagnosed in November 2015, we were told he was the 15th documented case in the world. We've discovered more affected individuals since, but it's still an extremely rare and unknown condition since its discovery in 2011. Our hope is to create awareness of the disorder and foster a sense of community among those affected by the disorder.
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| Teddy walking under a bridge of ice. |
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| AJ got to see a lot of cool formations! |
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| Nature is pretty darn amazing ... and pretty. |
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| Look at those smiles! |
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| First time on ice skates, and he loved it! |
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| We had so much fun we weren't even jealous of Dave in Florida. |
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| The boys convinced Grandpa to ride the Beast. |
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| Those are genuine smiles. |
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| Can you see his excitement? |
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| Groundhog's Day repeated. Still all smiles. |
One of our favorite winter traditions is winter picnics with my parents, complete with tubing on the creation my dad made called the Beast. This tubing creation has allowed Teddy to join the tubing fun since he was 1.5 years old, even when he had no body tone. We’ve done this tradition once a winter since 2014, first starting at my parent’s farm and then moving down to our land.
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| AJ wanted to pull Teddy in the sled. Teddy loved that. |
We actually got to enjoy 2 winter picnics this year, one in January and one in February. We were blessed with incredible Wisconsin winter weather both days: sunny, in the 30s, little wind and snow on the ground. You can’t ask for better Wisconsin winter weather, especially since that combination makes snow extra packable, perfect for chucking snowballs while being pulled by the tube.
These days are some of my favorites because they’re long enough to enjoy the tubing, campfire, lunch and walks on our property, yet they’re not so long that we get frustrated with Teddy’s lack of listening skills. It’s a very manageable day, and we all enjoy them.
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| This is a picture of Teddy. He put Grandpa on the tractor and then ran away up the hill. |
Teddy went tubing one day, but his preference is to ride with
Grandpa as he crazy drives the Ranger trying to knock us off the Beast. AJ’s
job is to pack snowballs for me to chuck, and Grandma hangs on for dear life.
Dave enjoys that for a while before sneaking off to the river to fish.
Simple days like these are the best family time. No screens
while we’re there (ignore the screens that are on the entire drive to and from)
and just good ol’ fashioned fun.
The other weekend Teddy and I went for a hike together at a local nature preserve. Teddy was super excited to spend some time outdoors in the woods. He loves running through the woods, and it’s great for him to practice his stability.
Since this preserve was in the path of tornado-like winds the other year, there’s still tons of down trees, paths blocked and even more bramble that seems to be right at eye height. So Teddy got plenty of practice ducking and even had to crawl under some trees. He came away with no scratches and both eyeballs still intact, so that was a success.
We probably spent about an hour walking and covered about a
mile, not bad for Teddy and the terrain and all the breaks he took to sit on
the ground because he didn’t want to go any further (or he wanted to go the
opposite direction). While I’d love to hike longer and further, this hike was
so enjoyable because I went into it with no expectations and let Teddy lead our
adventure for the most part.
He thought it was hilarious that he was running and sliding
down a hill (with a steep cliff dropping to a river on one side), but
thankfully he slid right into a tree that was downed across the trail. That
stopped him and allowed me to catch up to him, giggling hysterically. (Him, not
me, although I did chuckle after telling him he almost died.)
Although Teddy is persistent, he does fall pretty often. He
doesn’t mind those falls and will often pick himself up and keep running
without pausing. Yet he also took advantage of these breaks to munch on snow. I
know many kids like to eat snow, but Teddy takes eating snow to a whole new
level. He’ll eat it straight off the ground, scoop it up to eat it or lick it
off tree branches. In fact, when he didn’t want to head back to the car, I kept
scooping up the cleanest snow I could find to offer him “snow snacks” to keep
going.
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| Teddy munching on his snow stick. Weirdo. |
This was a great adventure with Teddy, and I’m grateful for afternoons like this.
Last night Teddy asked to go outside to play, so we headed out with a beautiful snow falling. My intention was to get the driveway cleared, so that it would be easier to finish in the morning. Teddy loves dragging shovels around, so I was optimistic I'd be able to get the driveway shoveled. None of the neighbors were out, and all their garage doors are shut, which was good because those are instant magnets that lure Teddy to them.
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| This was earlier in the day, before the snowfall. It was dark by the time we had snow. |
Well, after about 5 minutes, Teddy thought it would be funny if he made his way to the neighbor's driveway. It took him several minutes because he was dragging a giant shovel and trudging through a couple feet of snow because he walked through the lawn. He was laughing the whole time, knowing he was being mischievous. I waited until he was close to heading up their walkway to go retrieve him and bring him back to our driveway. No sooner did I start shoveling again did he take off for another neighbor's driveway, laughing the entire way, with his shovel in tow. Once again, I kept shoveling until he got nearly to their door and then ran over to retrieve him.
Fortunately, each time he willingly walked back to our house, instead of flopping to the ground like a 70-pound sack of flour. We headed back and resumed shoveling our driveway. He made a couple passes before he took off for a third neighbor's driveway. When I went to retrieve him that time, he was literally collapsed in the snow in a fit of giggles because he thought he was absolutely hilarious. Each time he'd fall, he'd eat the snow off his mittens or the ground, which is pretty standard for Wisconsin children during fresh snowfall.
He made it to a fourth neighbor's house before I tried to encourage him to bring out our garbage bin because it needed to go out for the morning anyways. He interpreted that as go to the neighbor's bin and attempt to drag it to our yard. That let me finish the shoveling, as much as I could, before I retrieved him one more time. That time the garbage can flipped and dumped a pile of snow in his face. I just chuckled and told him he deserved it.
I had thought it was odd when we went out to shovel that there were footprints leading to our door, until I saw that someone's dog had traipsed through our driveway and around our house. I can only imagine what our neighbors thought with random shovel passes, lots of little and big footprints and flop marks.
Teddy gets the undivided attention of our sitters this week because AJ is at his grandparents' house for a week of e-learning, Beast rides and card games. Our sitters take advantage of these week to spend a bit more time outdoors because Teddy loves being outside. This week Bri took Teddy to Waukau Nature Preserve, which is where we went for our Christmas Eve stroll.
She realized when she got there, though, that there was no way she could push him on the snow-covered trails in his chair. She realized she had a sled in the vehicle because they had also been looking for sledding hills, so they traipsed into the woods using the sled. Teddy was super chill hanging out on the sled, which is slightly surprising because he often wants to take off exploring. I think perhaps the woods was enough of a distraction itself and there were no docks, open garage doors, etc. to distract him.
I chuckled to see the sledding hill they found because it's a rather steep hill that curves and has plenty of obstacles on the sides. But they managed to safely navigate it several times and had a blast sledding in the woods and exploring there.
I'm not sure I'd have thought to take a sled for that hike, but it's definitely something I think we'll have to try this winter because they had so much fun! We're so grateful for our sitters who not only keep our kiddos safe but also give them such fun experiences.
It's winter in Wisconsin, which means the Beast made an appearance (hopefully the first of several for the season). If you've read this blog for a while, you've likely seen posts each winter detailing the fun we have with the Beast. This past weekend, we headed to our land for a day of playing in the snow.
The drive was absolutely beautiful due to the heavy frost from the fog that covered all the trees in a blanket of white. We arrived to discover the deathtrap of a deer stand was blown over from heavy winds (and quite a few shotgun shells), so that pleased Dave. It's on our list to get that down and cleaned up, so that we don't have an additional hazard to tempt Teddy.
We discovered that our hill with the garage is perfect for sledding and tubing. The boys had so much fun playing with Ms. Bri, our nanny who came down to play for the day with us. AJ loved sledding with her while Teddy rode on his beloved Dorris (the tractor) with Grandpa.
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| We raced down the driveway, making the most of the tubes. |
My parents brought the Beast down for the day, so we all got turns riding on the Beast and trying to have snowball fights while driving and riding. It's tough to nail those on the Ranger with snowballs from behind, but we put forth a good effort. It's tough to say whether Teddy likes the Beast or the Ranger better, but I think he likes the option of both.
It wasn't a sunny day, but it was fairly enjoyable in the 20s. We needed all the variety of layers to keep switching Teddy into dry layers ... seriously, changing a diaper through all the winter clothes is a pain in the tush! Next time, we'll make sure we build a fire sooner for s'mores and additional warmth (although Teddy isn't one to stay near a fire to warm up without getting into trouble). We still managed about 5 hours of fun before heading home.
We're already looking forward to our next winter play day at the land. (And Dave is looking forward to his next opportunity to do some early season trout fishing!)
In Wisconsin, we get what you could aptly call a winter wonderland. We get a blanket of snow, perfect for sledding, traipsing through, snowshoeing, skiing, building snowmen and forts and the like. We also get beautiful days in the 20s or low 30s that are perfect for enjoying the snow and nature. We also get days where it's so cold that it hurts to breath outside. With the exception of a few wickedly windy or cold days, we're able to enjoy time outside most days as long as we dress appropriately.
Despite temps around 10°F (without factoring in the wind, which always makes it feel colder), we went for walks on Christmas Eve and Christmas Day. It was wonderful to be in the woods, enjoying the stillness and the natural beauty that exists even without snow. The day after Christmas, Dave and Teddy did a nice mile loop while AJ tried out his new bike and I chased him huffing and puffing for 3 miles. Let's just say that a 7-speed bike increases his pace that I'm going to have to do some speedwork to hang with him this upcoming summer. Then on Sunday we explored a new-to-us wetland with a boardwalk into the water and a trail of sorts through the woods.
The challenge on all these walks is whether we chase Teddy, who doesn't have the stamina for a mile-long walk, takes off running in random directions and sometimes flops to the ground and refuses to move. That's a challenge if we still have a long ways to get back to our starting point, so for longer walks we'll take his chair. He can get out for portions but can also be safely contained and transported rather than a fireman carry as he actively resists. So we took his chair to explore the new wetland place, which worked great for the boardwalk and part of the trail. Then the trail became non-existent aside from markers on trees. Dave and I each took a handle and pulled his chair backward to navigate the rough terrain. So on the way back, we took to the ice for a much smoother (and more fun) ride. I could even spin Teddy 360° in his chair on the ice. AJ had fun exploring the bubbles in the ice and all the other little wonders of nature.
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| Note the "trail" as Teddy enjoyed peering through a hole in the ice. |
That afternoon we got several inches of snow. I bundled Teddy up and headed to a park that was empty. We spent close to an hour playing in the park, whizzing down the slides. (For those of you not native to winter wonderlands, a sprinkle of snow makes slides faster. As a child, we'd carry handfuls of snow to the top of the tall slide and dust them on to make our trips down even faster.) It was really enjoyable to just follow Teddy where he wandered and let him do his thing (aside from the construction equipment that we weren't going to explore). We both love being outside, and it was great to enjoy it together.
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| This face mask keeps him warm and lets him chew on something-double win. |
On a side note, I'm grateful my new snow bibs fit both our sitters because they have many snowy days to play with the boys. Lucky them, right?
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| The Beast fits two adults and two children still! |
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| A winter picnic wouldn't be complete without a log as a seat. |
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| We're so blessed to have this land and to enjoy it on this beautiful day! |
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| AJ and Teddy riding in the Beast. |
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| Teddy kept making my mom sit in the Gator with him. |
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| This is completely normal for us. |
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| This is mine. All mine. Wait, can you make it go? |
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| Family sledding on the Beast. |
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| Personalized sledding perfection! |
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| Thanks to my sis-in-law for standing outside barefoot in the snow to take this picture. |
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| Teddy thinks snow is scrumptious. |
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| He may be trying to eat the snowman ... |