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| He's just a tad happy to be on Toto. |
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.
Friday, May 26, 2023
Teddy and Toto
Friday, October 1, 2021
A Snapshot Series of a Weekend With Teddy
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| Teddy is running away from me with a fly swatter. |
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| Teddy is running to put wood on the fire, wearing my gloves. |
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| Teddy wanted in on the cornstalk sword fighting that was happening. |
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| This is the moon. This is how early Teddy wakes up. |
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| At least the sunrises are pretty when they happen an hour later. |
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| This is how I feel about the early wake up calls. |
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| But he's so cute, and we still love him. |
Tuesday, January 5, 2021
The Return of the Beast
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!)
Thursday, October 8, 2020
To Find Joy ...
"Learning to live in the present moment is part of the path of joy." - Sarah Ban Breathnach
I came across this quotation this past week, and it resonated with me. It's similar to a saying I've heard before that essentially says to love the life you have, not the one you wished you had. When we can find joy and happiness in our present circumstances, we can appreciate what we have. Sometimes, that joy and happiness first needs us to accept our present circumstances, rather than spending our effort wishing things were differently.
We had plans in August for a long weekend backcountry camping with AJ, our third year with this tradition. My parents had graciously agreed to spent quality time with Teddy to allow us to go. The week before our planned trip, we determined that felt too risky given the pandemic and changed our plans to spend a weekend with only AJ at our land. Then essentially a hurricane hit Iowa, and my folks headed there to help my brother with much-needed storm clean up. Completely understandable, yet still disappointing.
So we decided that even though it was a horrible time for me to be off work, we'd attempt to do a long weekend at the land with AJ last weekend as there won't be nice enough weather much longer for us to do that. All went as planned until it didn't, and we ended up at the land for the weekend with Teddy and my parents there. My folks were awesome and intentional to divert as much of Teddy's time as possible to allow AJ and us to do some of the things we hoped and planned to do, things that are impossible with Teddy in tow. We managed a hike up the side of the "mountain" that would have been impossible with no trail and Teddy on my back. AJ went through a box of matches and spent hours working on building fires from a flint and striker. We did some woodworking projects and cut plenty of firewood.
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| This kid makes the best faces smooshed in the window. |
AJ was initially in tears when our plans changed yet again, and my dad apologized profusely that the weekend didn't go as planned. I said it went how it went, and that was perfectly OK. When I asked AJ what the best part of the weekend was, his answer was "spending time with everyone." That wasn't part of the plan, yet it ended up topping his list (even though he carved a pumpkin with a machete).
Still, I'm not going to lie. I'm disappointed I didn't get to check off one item on the wish list for the weekend: Sleep for 12 hours straight.
Thursday, August 20, 2020
Early Mornings that are Worth It
I used to like mornings. I would define myself as a morning person and enjoyed that quiet space when I could be productive, get a head start on baking projects, go for a run with friends or watch the news. But with my children, Teddy in particular, there is no sanctity in mornings anymore. Both my boys are early risers, but AJ is independent and knows better than to intentionally wake me unless he needs something (although sometimes he's noisier than he intends). Teddy, on the other hand, is contained to his room until we let him out. Sometimes our efforts to entertain him with toys that we set in there after he falls asleep works. Other times he empties his clothes drawers, despite the child safety locks, and dresses himself. Or takes the picture off his wall that he shouldn't be able to reach. Or kicks at the wall or the door until we come to do his bidding. There's nothing peaceful about mornings with Teddy, and there's definitely no sleeping in with him, unless Dave and I rotate turns on the weekends.
But, Teddy usually wakes up happy and rewards you with smiles and giggles, along with his demands. The challenge is that he wakes up incredibly early at our land. What's incredibly early? 4 a.m. is the earliest ranging as late as perhaps 5 a.m. I think his sleep cycle is really light then and that at home he can often doze back off, or at least roll around half asleep for a while. At the land, he rolls around and discovers there are others in his bed, so it must be time to play.
Dave deserves sainthood because he's the one who usually takes Teddy in those wee morning hours. They often head to town to fill up the vehicle with gas, drive around our property looking for deer and generally just kill time until it becomes a more acceptable hour. I've offered to help, or at the very least tag team, so that Dave can get some additional rest. He finally took me up on that offer this weekend, so he took Teddy from 4:30 to 6:30, and I took Teddy from 6:30 to 8:30.
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| Such pretty mornings. They'd still be pretty at 6 a.m. instead of 4 a.m. |
Teddy and I first took a drive around the land in the Tahoe, mostly because that's where Teddy was when Dave handed him off to me. Then I loaded him into his running chair to go for a walk. We checked on the fire and walked down to the river. After about an hour, we headed back to the garage. We played LEGOs inside our hanging tent chair, which is large enough to fit me, him and the LEGO bin, but not with much room to spare. We had breakfast and finally woke up Dave for some family cuddles.
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| Early morning smiles. I think he's happy to have a stick to whack me. |
For someone who wakes up at 4 a.m., Teddy handles it much better than most people would. He is in remarkably good spirits for the day and loves being at the land. More than one day gets pretty tiring, but it's amazing to see how well he holds up. If only we had his energy ...
Thursday, July 16, 2020
Not Our Traditional Vacation
Our sitter is on vacation this week, renting a lake house with her family as safely as possible during the pandemic, so we headed down to our land for the week. We came down Saturday afternoon and are planning to head back late Saturday or Sunday morning. The good news is that Teddy actually falls asleep here with minimal fuss, likely because he's so exhausted from all the fresh air, playing in the river, oh, and getting up at 5 a.m. or earlier every day. Still, it's wonderful not to have to fight the battle to sleep that occurs on vacations in hotel rooms or even our tent. And Dave is a saint for taking Teddy for early morning drives to allow the rest of us some more sleep.
It doesn't feel like vacation, more like a long weekend, especially since except for a few days I'm still fielding calls for work. That violates my standards for vacation, but extraordinary times call for extraordinary measures. But we're spending a lot of time outdoors, a lot of time together and still making memories.
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| This kid can convince most people to do just about anything. |
We've covered a few projects, like hanging a second swing, moving rocks away from our garage, fixing the tractor and organizing the garage. We've also broken a few things, like the Ranger's radiator fan and the tractor's hydraulics that we just fixed. We've had visitors like my aunt one day and uncle another day. We've taken Ranger and tractor rides and Tahoe rides when both those were broken, but we've also done far more walks. We've made foraged mojitos and grilled some delicious breakfasts. We've played in the river every day except one, when it was cooler and rainy. We've had a fire and watched fireflies. We've seen misty mornings.
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| So much style. So much class. |
Heck, today we even ventured to Effigy Mounds National Monument, which made it feel darn close to a real vacation for us. We all had masks, although Teddy pretty much just chewed on the string on his. We rarely had to use them because there were relatively few people and several opportunities to give each other enough space. I was pleasantly surprised that more than half of those we encountered had masks, and it was a really enjoyable 2-mile hike to look at some of the burial mounds. I was impressed with how much hiking Teddy did, especially of the 350-foot incline that started the hike. He managed about a third to half of that, along with two other sections of hiking. Granted, one section of hiking was inspired by the maintenance lawnmower he heard and the other was motivated by pushing me down the steep incline, which was great fun for him.
It's so neat to watch him take off down a hiking path, especially since I know our days of carrying him are limited. Each summer I say, just one more year, and then each year I still carry him. When we were hiking with my mom, she said that I can't carry him because I'll hurt myself. My answer was that without carrying him we wouldn't be able to enjoy the beautiful hike we were on. She understands why we carry him, and I understand her concern. But I'll carry him as long as I can because it's the only way for us to enjoy the places we want to explore. We don't live in an accessible world, so Teddy depends on us to make the world accessible for him as much as we can.
We even stopped for ice cream on the way back to the land, ordering with masks and eating in the vehicle, but it felt truly like vacation with a national park site, ice cream and a bit of windshield time. We are looking forward to revisiting Effigy Mounds in the future when we can go inside the visitor center and explore a bit more under normal circumstances.













