This Land is Our Land

So last week we did a thing. We made an investment in a piece of property in Southwest Wisconsin, which happens to be right on a trout stream.

See, it sounds wise and smart when I phrase it like that, right?

Our last vacation was a bit rough, which prompted Dave to think about other options for us to enjoy the outdoors as a family. He wanted to find land where we can build a Teddy-proof cabin, make memories as a family and spend time enjoying the outdoors fishing, hiking and riding around on some cool UTV/ATV because that's Teddy's jam. So he started looking for land in the fly fishing mecca of Wisconsin because where else would you buy land?
 

We're blessed to call this ours.

We closed on our land last week and had a fantastically memorable first night there. Teddy stole our beer that we shared to celebrate the land and took a swig before we could stop him. AJ swallowed his tooth eating chex mix. (Honestly, I didn't even know he had a lose tooth prior to that.) We couldn't quite set up our tent because we didn't have the tent poles in the bag. On the bright side, we have a spare tent now, and Dave and AJ got to fish while Teddy and I went tent shopping.

Our first family meal included penny hot dogs and champagne.

We set up our picnic table and benches that we built in the week between Disney and closing on our land, along with our screen tent and new tent. Dave caught more trout in two hours than I can remember him catching in a long time. The boys were excited to run and drive around our land (as we took the Tahoe around to create some trails. We were mesmerized by the fire flies when we stepped outside our tent at night, and I was equally awed when I stepped outside again in the morning to realize this slice of paradise is ours.

This is one of my favorite recent pics of me and the boys.

It will take time to build the cabin that is Teddy proof. But the memories we'll make as we discover the treasures of the land and the nearby communities don't need a cabin to happen. We've already started by discovering the Amish bakery with amazing donuts that's just a couple miles away. And Dave's cousin happens to be our neighbor, so we have someone to help us safely forage and to inspire AJ to the world of fly fishing.

This is going to be fun, folks.

Disney ... Where Nightmares Happen

I referenced in my past two posts that Teddy got sick while at Disney. After a fun-filled day at Animal Kingdom, I had already fallen asleep when Dave woke me up by whisper calling my name, followed by the dreaded phrase, "There's something wrong with Teddy." Talk about going from a sound sleep to standing in the bathroom flipping on a blinding light in an instant. As soon as I turned on the light, we knew Teddy was having a seizure, and our nightmare was just starting.

There's some things I'm incredibly grateful for looking back on the experience:

1. My mental script of what to do when Teddy had a seizure worked perfectly from the rescue medication standpoint. He's never needed it before, but I'd mentally walked through using my Garmin watch to start a run to time a seizure to know when to administer rescue medication. 
2. Dave's parents were literally two doors down, so they were in our room within two minutes of me waking up, thanking to me pounding on their door waking them from a sound sleep. I couldn't be more grateful for all they did that night and the next day, as well as Dave's brother and his family ensuring AJ enjoyed his day.
3. Disney was incredibly responsive, having multiple people on site within 5 minutes of being called, all doing their best to help. They were also great after the fact, helping out with our journey back to the resort and calling the next few days to check on Teddy.
4. The EMTs were literally right down the road and were there within probably 10 minutes of the the moment when Dave woke me up. They were also great at their jobs and even offered for us to visit the station later in the week, although we didn't make it there.

This was the first time we've had to use Teddy's rescue medication since he got prescribed it in December 2017. All my fears of using it were completely overruled by the fact that he needed it, so again, that mental script worked perfectly.

This was also the first time Teddy's ridden in the ambulance with lights, sirens and the whole 9 yards. We called EMTs for the very first seizure he had but never since until now. He rode in an ambulance for transport back in December 2017, but that was once he was stabilized. This was a 30-minute ride with lights, sirens and even honking horns to try to get into the right lanes around drivers who didn't care about the ambulance. The sound the siren makes when it echos in the overpasses still sends shudders through me since I heard it so many times on that ride.

We spent the night at the Children's Hospital ER. The staff were fine, but it was such a different experience than when we've visited our local ER. There's something to be said for smaller towns where there's not so many patients. We got quite the response when Dave pushed the call button, though, when Teddy vomited all over himself and me because they thought he was having another seizure. We got released around 4 a.m. and had nearly an hour-long taxi ride back to the resort due to the taxi driver getting lost repeatedly. Let's just say we went to Hollywood Studios twice before 5:30 a.m. Oh, and the kind taxi driver gave us a tour of Orlando on the way, pointing out the nightclub shooting scene and letting us know when we were driving through the worst part of Orlando. Trust me, I didn't need that information at 4:30 a.m. when I was operating on less than an hour of sleep and a whole lot of stress.

Seizures suck.

We got back to the resort at 5:30 a.m. and sent grandma back to her room to rest (not that she got any rest) because she had stayed with AJ the entire night. AJ managed to sleep through us, Dave's folks and several Disney staff in our room with all the lights on and all the commotion. Guess we wore him out. AJ woke up at 6:30, after I had napped for an hour, so I took him to his grandparents' room and then attempted to fall back asleep. I woke up again at 9, took a quick shower and headed out for my first-ever (and second and third) Uber ride to get Teddy's rescue medication filled.

Tuesday was one of the worst days of my life. I was that person who spent the entire second Uber ride silently crying in the backseat because I couldn't handle being told that the first pharmacy didn't have the medicine in stock. Then, I lost it at the second Walgreens and had a complete meltdown in the bathroom. Then, to add insult to injury, the third Uber ride back to the resort got just as lost as the taxi driver and took me to Hollywood Studios a third time. (And, let's just say, they're not so keen on you driving through the parking lot without stopping when the park is actually open.)

Dave headed to meet AJ for his Jedi training-at my insistence-while I stayed with Teddy. I got puked on 3 more times and was convinced we needed to go back to the hospital because Teddy couldn't keep even the medicine down and was still burning up with a fever. I was terrified he'd have another seizure, so I was just waiting for Dave to get back to head to the hospital. Then Dave's mom showed up, and all of the sudden Teddy could move from his deathbed.

At the insistence that I needed to eat something, I went to the snack shop and proceeded to have another meltdown when the lady asked me how my day was. I don't think she was expecting me to burst into tears, so I made my way to the bathroom for my second bout of sobbing. And then when I got to the room again, I went to our bathroom to sob one more time before determining I needed to run.

You see, it's hard to run and sob at the same time. Running forces you to regulate your breathing and calm down. For the first time all day, I genuinely smiled and felt the tide turn in the right direction. We monitored Teddy closely and drugged the snot out of him with Tylenol and Ibuprofin, along with his increased dose of his anti-seizure medicine.

The next couple days were sketchy, monitoring him closely, keeping him well medicated and worrying. Turns out, as we discovered when we took AJ to our walk-in clinic Sunday, Teddy had strep throat. We had no clue until his seizure, and the only warning sign in hindsight was shivering before bed. We had attributed that to being chilly from a water ride and going onto an air conditioned bus. Even through the illness, there was no sign of sore throat that we could tell. We had fever and vomiting as his symptoms. He's a tough kid to diagnose with his lack of verbal communication and high tolerance of pain.

The saying ignorance is bliss is true. This event ripped away some of that ignorance, that ability to pretend it won't happen to us. Those kids who need ambulance rides for their seizures or who actually need rescue medications? That won't happen to us, even though Teddy has a rescue medicine prescribed. Yeah, right.

Then I think about all the what ifs, which is such a slippery slope. What if this happened on the airplane? Teddy could be the reason a flight is diverted for an emergency landing. What if this happened when we've been in some of our most remote national parks, literally 3 hours from medical services? I don't know. What if a seizure like this happens when Dave isn't right next to Teddy to notice that his breathing changed and something is wrong? I don't know.

The what if questions could go on and on, but that's not a productive line of thinking. The best we can do is work to be prepared in the event that we have a situation arise in the future, work on our mental scripts and continue to trust in God to help us along the way.

Disney ... Where Dreams Come True

Most people dream of Disney, but we're not most people. Still, when given the opportunity to join Dave's entire family for a week of fun at Disney World, we packed our bags and headed south. We were quite concerned about how things would go with Teddy, and it turns out that most of our concerns were completely unfounded. (Turns out we were worrying about the wrong things ...)

Our week's adventures started in Animal Kingdom, and we had a full day packed with fun. We headed to the park fairly early in the morning and rode the triceratops ride twice without any line. Those were the first two trips of seven on that ride for Teddy for the day because he kept asking for it by clapping and pointing any time he saw it. We snuck on a roller coaster with AJ while the grandparents rode the triceratops ride a few more times with Teddy.

Teddy LOVED this triceratops ride. He loved it just as much the 7th time as the 1st time.

Our full family group did a jungle river rapids ride, a smoother boat ride and the animal safari, which was super cool. Teddy and I checked out Scrooge McDuck, which was the litmus test for how Teddy handled meeting the characters. Normally, he's pretty freaked out by Santa and the Easter Bunny, but he was completely intrigued by the Disney characters. He wanted to approach them on his terms and then try to pull their noses (for the dogs) and stick his head in the beaks (for the ducks). It was so cool to watch him interact with them during the meet-and-greets and at the character breakfast we attended. I was super nervous about how Teddy would react to them, but one of the highlights for me was watching his interactions with them, particularly since they are all non-verbal, just like he is!

We went back for a short break at the resort before heading back for a few more hours of fun in the evening. We even managed a quick dip in the pool that night before bed after having a day with two children who didn't complain and truly enjoyed the Disney magic.

The middle of the week was really rough for us because of a health concern for Teddy, which is the next post. So, Teddy completely missed Hollywood Studios, and I couldn't tell you much about it except I went with AJ and grandma for an hour or so to build a light saber and meet one bad guy from Star Wars. Dave didn't see much more except for 1-2 rides with AJ and AJ's highlight of becoming a Jedi. We're extremely grateful to Dave's parents and brother's family for adopting AJ into their groups to ensure he had a fun-filled day and got to check all the wishes on his wishlist.

AJ and I explored Magic Kingdom Wednesday while Dave and Teddy rested after the character breakfast. We got a few hours of family fun in the evening when Dave and Teddy came to the park, although we spent a good portion of our time worrying about Teddy.

This was one of the happier moments at Epcot for Teddy.

Thursday was Epcot, and Teddy managed to explore the whole day with us as a family. Now, that's not to say that he enjoyed the day because he just wasn't digging any of the rides. He had enjoyed everything in Animal Kingdom and was freaked out by things that he'd normally find pretty fun. We even had to leave the line in one of the rides, causing folks to create a pathway for us, because he just couldn't handle the wait. He was having a meltdown, so I took him outside to allow Dave and AJ to actually enjoy the ride that AJ was so excited to do. Of course, the minute I took Teddy outside, he was all smiles to play in the model car of what we were actually supposed to ride. In hindsight, I don't think he was feeling the best, but it came across as just grumpy and wanting to do things his own way. He did perk up a bit Thursday evening when we went back to Epcot to meet some friends, and he clapped and smiled through the Frozen ride, which was my victory for the day.

Instead of riding the Test Track, Teddy spend 20 minutes playing in the demo car.

Friday was our final day in the parks, and Teddy was feeling well enough to enjoy the entire day. He was back to his usual self of loving the rides and wanting to high five all the characters. It would have been a truly magical day for our family, if not for AJ succumbing to the same illness that struck Teddy earlier in the week. He managed most of the morning without being too miserable, went back for some swimming with his cousins and resting and rallied for about two more rides before becoming completely miserable. I give him credit, though, because he rallied for Space Mountain.

So, if not for the illness that struck our family, I think our low expectations for Disney would have been blown out of the water. Monday truly was a magical day, and there were some other really great memories created as well. It's to the point that I'd actually like to go back to Disney for a day or two to try to make up for the days and memories we missed.

When Rare Isn't So Rare

We've been fortunate enough to meet children with CDG-PIGN in the past, as there's a family a couple hours away near Chicago whom we've visited twice. We also met a family in Maryland when we visited the National Institutes of Health last year. There's something incredibly special about meeting another family who instantly understands the struggles, challenges, joys and fears of your life with your child's rare disability. When there's fewer than 100 known cases in the world (and that's a generous estimate), it's pretty incredible to connect our families in person.

We had that opportunity again last week when we visited Florida for a family Disney vacation. (More to come when I have time on Disney as well as our life-shaking seizure that happened there.) We were actually hoping to meet two different families, but one was tied up with mission trips and a hiking trip to the Appalachian Trail (with her 17-year-old son with CDG-PIGN - talk about amazing!). I'm so grateful we had the chance to meet Vivien and her parents, Heather and John.

Vivien is 10 years old and lives about 40 minutes away from the resort where we stayed, so her parents ventured to meet us at our resort. Vivien was a bit shy at first but warmed up to enjoy some time on the playground, as well as in the hammocks. Her favorite, though, was when they visited our room and she could have all the pillows. Pillows are one of her favorite things, and it was so fun to see her snuggle into them with AJ and Teddy joining the mix.

Although there's certainly differences between the children with CDG-PIGN, there's striking similarities in their smiles, certain gestures and certainly their ability to manipulate their parents without saying a word. Vivien tried out Teddy's backpack carrier to see if it was comfortable for her as well as easier for her dad to carry her. She's petite for 10 years old, but she's still 10 years old and loves to be carried because she feels safe and secure in her dad's arms, not to mention that it's a lot of work for her to walk. Teddy and Vivien also checked out each other's wheelchairs, which was kind of fun. Teddy had to give Vivien a ride in his chair because he never stops moving and loves pushing and pulling people and things.

Both Teddy and Vivien were intrigued by each other.

We only visited for a couple hours because we flew in later in the afternoon and wanted to meet before our planned adventures for the week. But that time together was so precious, so incredible and left all of us smiling. Even neater was that Dave's parents got to meet another family like ours.

All the Disney magic aside, the meeting of our rare kiddos was one of the most magical moments.

Best Moments of the Bellin 2019

The Bellin is one of the largest 10k races in the United States and certainly the most fun course I've ever run from the atmosphere standpoint. There are literally people lining the streets nearly the entire way, kids and families spraying you down with sprinklers and squirt guns, people setting up their own aid stations (occasionally with alcohol because Wisconsinites sometimes live up to their reputation) and music lining the course.

The Bellin holds a special place for me because it was the event that got me to start running, purely by accident and the desire for a challenge. I've had the chance to meet and run along side Olympic medalists and running legends. Two years ago, we met Teddy's amazing running buddy for the first time and ran the Bellin together with myTEAM Triumph (MTT). I'm not sure that anything will top that Bellin run, but you never know unless you're open to the possibility of awesomeness.

We ran the Bellin a few days ago with MTT. It was a gorgeous, albeit warm, morning with a record-setting number of MTT captains participating in the race. Teddy was antsy during the pre-race time as he wanted to spend his time playing inside the giant trucks instead of waiting patiently. Not a surprise, right, for a little boy?

Teddy loves the trucks. He was showing me the other truck.

Sometimes Teddy is raring to run, and he certainly was asking us to push him and get started. He kept putting our hands on his chair to ask us to run with him instead of all the waiting before the race. Once the race started, though, he was pretty chill and relaxed. I think he likes the vibrations of the chair, so he rests his head against the side of the chair. He danced a bit to the music with his feet, rang his cowbell a few times and loved the sprinklers and the cup of ice.

His angels were two lovely ladies from the Michigan chapter of MTT who were wrapping up the national MTT conference. They were experienced runners and angels who made sure Teddy had a great time and that everyone knew Captain Teddy was rocking the road. They offered to help Teddy and I run together if we ever wanted to do a race in their part of Michigan, which was sweet. They also sent me the picture of these guys in green who wanted to get their picture taken with the superstar that is Captain Teddy. (OK, we asked to get our picture taken with the Green Bay Packers players.)

Captain Teddy with his angels and the Green Bay Packers.

My favorite part of the day, though, was meeting Captain Nate and his dad who was his angel who pushed him solo for the race. This was Nate's first race, and he was a sweet boy who was about 5 years older than Teddy. His dad and I talked a bit before the race about an adapted wheel that allows him to run with Nate in his regular wheelchair and get out onto trails to explore. After the race, we happened to sit by Nate to eat our recovery banana and cookie. Nate instantly connected with Teddy, talking to him with gestures as well as words. When we went to leave, we asked Teddy to give Nate a high five, but Nate opened his arms for a big hug. Then he proceeded to tickle Teddy's feet to make Teddy giggle because he had just watched Dave do that. He was such a sweet kid, and what his dad said about the experience is why MTT is an amazing organization for our community.

I asked how the race was, and his dad said it was absolutely incredible to have all the crowd support. He said that people were cheering for Nate by name, which happens because the captains have their names on their chairs. Then he said, "They were all cheering for him, instead of staring at him."

That is acceptance and inclusion. That is what MTT is about more than any sporting event or achievement. It's helping people see beyond the chair to the person inside. #runlikeangels #mttambassador

Kindergarten Graduation

Today's the big day. Teddy celebrates his last day of kindergarten with his peers. Next year, he'll be in the same classroom with a new teacher as well as brand new first grade teacher and mix of first grade peers with whom he'll integrate and spend portions of his day.

This year Teddy has grown so much, both physically and developmentally. He's been welcomed into his school with open arms, and it's his version of Cheers. (Remember, the old TV sitcom?) Everyone knows his name.

He's had so much fun on his bus rides this year, with his beloved Ms. Lori taking him safely to school and bringing him home. She makes his bus rides so much fun that he usually pushes me away each morning, so he can get to the fun part instead of mom talking. She gave us a family fun pack for summer memories with spray chalk and squirt guns, along with the sweetest note. I think we might have to work out a park or ice cream date with her this summer because both boys adore her, and quite frankly, so do I.

I think I'll cry when Ms. Lori is no longer our bus driver for Teddy.

Teddy had a graduation ceremony this afternoon with all the rest of his kindergarten friends. I think my heart was so full it eeked tears out my eyes. It's been an absolutely amazing school year, and I'll leave you with these photos. The best is the video, though, showing off his skills, moves, his amazing para and the moment when he found me in the audience.

Teddy's teacher could barely manage a picture through her tears ... not of joy!

Teddy rocked his graduation with his kindergarten teacher!

All smiles for graduation! So much pride in those three smiles. 

Penultimate Day of Kindergarten

Since penultimate is one of my favorite words, I had to use it for this post. Teddy's in his final days of kindergarten, and this year has been filled with so much good. We've been extremely fortunate to have a team of people who adore Teddy for who he is and want nothing but the best for him. 

This was one of the e-mails I sent this week to his primary teacher, the one who voluntarily works with Teddy and others who have equally challenging needs day after day. She chooses to do this as her profession. Well, at least she chose it, but she's retiring this year. I swear it has nothing to do with Teddy.

Hi Sarah,

I know this is your last year at Franklin, and Teddy will definitely miss you next year. Transitions are always a challenge, and we're so glad you were Teddy's teacher for his first year at Franklin and technically first year fully in the school system as opposed to the early childhood program. We have appreciated so much your communication throughout the year, which has been constant and given us insight into at least a portion of his days. That helps put us at ease and facilitate conversations at home about what he's learned and done at school.

You've worked so hard with Ms. Thoma this year to have Teddy included and integrated with his kindergarten peers. That was such a challenge for us in the past, so this year has been wonderful to have that happen regularly without us constantly needing to push for it. Teddy is such a social little dude who loves to be around others and learns so much from them, even if he still does try to sit on them or plow right through them at times. Watching Teddy interact with his peers is truly a joy when I've been on the field trips or at school to see how much they enjoy having Teddy a part of their day. It's incredible to see their excitement to have Teddy included match Teddy's excitement to be included.

We appreciate the effort put forth on academics, but what truly matters most to us is that Teddy is accepted, loved and celebrated for the amazing person he is and encouraged to be his best self. You've absolutely done that through the year. Even when Teddy had a rough day, you always focused on the positive aspects of his day while acknowledging the challenges. It's clear that you've seen potential in Teddy from the first meeting and have worked to help him flourish. We have never doubted your absolute care and commitment to Teddy.

There's so much more I could say, but I wanted to make sure you know how much our family appreciated you this school year. We wish you the best of luck with your next endeavors and hope your daughter is able to get the support and stabilization that she needs.

With so much gratitude,

Kerry

Do you know how good it feels to be able to write something like that and mean every word? This teacher approached even Teddy's most challenging days, where he was a tired, miserable cuss, with empathy and positivity. 

The other letter I wrote was to Teddy's kindergarten teacher. She's the one who didn't necessarily commit her career to teaching children like Teddy, but she embraced him into her classroom with open arms.

Hi Beth,

The letter today made us smile and will go in Teddy's memory box for sure. I'm not sure if Sarah has gotten it to you yet, but there's a Dr. Suess book Oh the Places You'll Go! floating around school for Teddy's team to sign for him. We started this when he started school to capture the memories and thoughts of his team along the way.

But I wanted to take a few minutes to thank you for all that you've done for Teddy and our family through the year. Last year it was a constant struggle for us to get Teddy included with his typical peers, and this year you embraced Teddy right from the start. I remember meeting with you the first day of school and walking away ready to cry because of how it was clear that Teddy belonged in your class from his spot at the table, to his poster to create to the extra supplies you had for him.

I know that including Teddy in your classroom presents additional challenges and that it didn't always go as planned. I know there were times that Teddy created a bit of that chaos that follows him when he sits on his friends or plows through his friends or doesn't share appropriately. But giving him the opportunities to be included, to work on learning from his mistakes and to learn from all his friends has been wonderful.

I can't imagine a kindergarten teacher who plans more fun field trips than you, and you made sure Teddy was included on every one. Again, his behavior isn't always appropriate for the entire duration, but I know that he absolutely loved being included on every single trip. 

Teddy is such a social little dude who loves to be around others and learns so much from them, even if he still does try to sit on them or plow right through them at times. Watching Teddy interact with his peers is truly a joy when I've been on the field trips or at school to see how much they enjoy having Teddy a part of their day. It's incredible to see their excitement to have Teddy included match Teddy's excitement to be included.  

Your efforts to educate his friends about Teddy will go a long way as they grow older. They're at such an accepting age that having Teddy included now will pave the way for their interactions with others who are different from them in the future. I know Teddy learns from his friends, but I believe they learn from Teddy as well. 

You've set the bar high for his first grade teacher next year. We truly appreciate all you've done for Teddy and us as his parents.

Thank you,

Kerry

These ladies have set the bar high for his future teachers, including the one I met this afternoon who's replacing his regular teacher next year. I know that as we get closer to the start of school, that back-to-school anxiety will creep in because of the unknowns. But for now I'll treasure the blessing that has been this year and look forward to Mr. Theodore's kindergarten celebration tomorrow.