Someone was very happy to be at the table with his popcorn. |
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.
Thursday, July 27, 2023
Running & Relaxing
Thursday, July 20, 2023
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. |
Wednesday, July 12, 2023
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. |
Friday, July 7, 2023
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.