Loving Life

This child loves time outdoors in just about every form or fashion, particularly when he's directing his own destiny. The stubbornness is strong with this one, as is evidenced by every attempt to get him into a vehicle and out of the vehicle once we get home. But while he's outdoors, he's a happy camper, even though we've had cold, windy weather lately. (Wisconsin in February is not the most ideal. Seriously, I never heard of a snow squall before last week, but I discovered what that was when I was driving in it.)

We spent some time outdoors this weekend. Dave, Teddy and I visited a nature preserve without a specific plan in mind. We wandered mostly where Teddy's legs carried him, tried sledding in a few spots and perhaps fell off the bank several feet down. Good thing Teddy is durable and remarkably unfazed by something like that ... unlike Dave. As long as we don't have plans to do a specific hike or walk, it's quite enjoyable to follow Teddy's lead. It eliminates a lot of the power struggles we sometimes encounter. I've also learned from our childcare providers that making things fun like playing Red Light, Green Light or fun, stomping walking or giving him a stick can make walks more enjoyable. Sometimes he needs a distraction to keep him focused, if that makes sense.

You can feel the joy, can't you?

We also spent some time at a park on Sunday when it was unseasonably warm (and therefore a soggy mess) and windy. Even though the temperature didn't require snow pants, we wore them anyways in an attempt to stay drier. *Shakes head at silliness* Teddy was quite pleased to discover the puddles to stomp in, slip around in (because there was ice under the water) and generally play. He also found a ball to carry around and send down slides. It was great to spend time outdoors and simply playing at Teddy's level.

Teddy's Gift

 It might sound weird, but during these pandemic times I make a point to deliver goodies to others with Teddy in tow. These visits are brief, distanced or through glass doors and masked as best as Teddy masks. Sometimes, though, it's worth the glass barrier or greater distance because then they can see the gigantic smile on Teddy's face.

I know that for many who we visit the greatest gift isn't the little treats. It's that classic Teddy smile. It's him showing off a few new dance moves (or his boots during today's visit by shoving his foot out the window). It's the giggles that he gets when he's being silly, like dropping a ball for me to catch through the car window. 

These are ordinary moments in our lives, things we get to see daily. Yet I appreciate how much joy they bring to others who know and love Teddy. That's why he accompanies me on the visits or comes to the glass door to high five through the glass when people stop by our house. 

I may bake the cookies or bread, but I know those brief interactions with Teddy are the true gift that makes people's days brighter. 

It's a Small World

As I alluded to in my last post, we often have an instant connection with other families whose child or children have CDG-PIGN. Each of our children is incredibly unique, yet there are so many commonalities ranging from sleep struggles to heart-warming smiles. We've discovered that many of our children sound similar, walk or move in nearly identical ways and other common threads that are tough to find when your child is like no one else in your community. 

Thankfully the Internet allows us to connect with others across the world. One of the first families we met on our PIGN journey is from Poland. The mom is an incredible advocate for her daughter who started our Facebook group that has brought so many others into our world. We often get a beautiful Christmas card from Poland (specifically addressed to Teddy, of course) with snippets of Polish and English translations. I will say, once again, how impressed I am at how well others can communicate in English. But that's another conversation on how Americans, in general, lack the language skills many other countries foster.

This card is like a hug from Poland.

This is about gratitude that Teddy's diagnosis has made the world smaller, connecting us with others around the world who I consider our PIGN family. We've met a handful of these families and have high hopes to meet others. There's two little boys in New York that I would love to see interact with Teddy because I swear one of the boys is his brother from another mother. Then there's the two older boys in Florida that I'd love to meet as a glimpse into what the future may hold-I'm only mildly jealous Dave got to meet them in February. Oh, then there's the little girl in Germany who I jokingly call my German goddaugher. And the family in Poland. As you can tell, in reality, I'd love to meet as many of these children and families as possible. 

For those we've met, there's an instant comfort and understanding. There's no need to explain our children or apologize for their unorthodox behavior. For me, there's often a sense of awe as I marvel at the similarities or creative solutions other families find. So, when we can travel again, we'll continue to reach out to meet up with those along our path.

For now, we treasure these Christmas cards and the friendships that span languages, countries and oceans because of the common thread of a variation on a single gene that alters lives and forges friendships. 

See Something Positive? Say Something Positive!

 Last week, out of the blue, someone who Dave and I work with through our volunteer work with SkillsUSA (a career and technical skills organization) sent me a message. This year, she transitioned to teaching special education for the first time after a couple years teaching in a traditional classroom. It was just a simple message:

I just want to share with you, now that I am teaching early childhood SPED, that I absolutely love seeing all of the hard work you and Dave do to support Teddy and make sure he is able to be successful!

That certainly put a smile on my face! It wasn't solicited, it wasn't in response to anything and it was just a simple, genuine compliment. Those little words of kindness, which probably took a minute or two of her day, rippled kindness and happiness through my day. I'm still smiling thinking of it a week later.

So, my challenge to you is this: if you see something positive, say something positive! Don't be afraid to reach out to those you know and love or even complete strangers who are doing a great job. If you've never tried to navigate two toddlers through a store, I can guarantee you that many parents in that position could use a boost from someone recognizing their parenting. If you see a young child wearing a mask well, what better way to show that you notice how great they're doing than to compliment their mask? (It's probably best to just leave it at, "I love your mask!" not "You're doing such a great job wearing a mask unlike that adult over there who can't be bothered to wear one properly.") 

Spread a little kindness. Make our world better. 

Find the Joy in Life

There's a lot hard about life right now with COVID, racism, system injustice and so much more. But there's also joy in life every day. Teddy's world was particularly joyful this past week because we had a tractor in our garage. 

Perhaps I should rephrase that to say Teddy had a tractor in our garage. He didn't put it in there, but he spent more time on that tractor than anyone else ... mostly because he shoved AJ off the seat when AJ attempted to sit on the tractor. My dad purchased a tractor, which will be moving down to our land for various projects, including recreational rides for the boys, and it was stored in our garage for about a week.

Teddy was so excited to see the tractor, sit there and pretend to drive by steering the wheel, moving levers and jamming down the clutch and brake. (Just kidding, Dad, he didn't do any of that in case anything is broken.) He loved his time on the tractor, and he knew there was a tractor in the garage that he couldn't wait to show our babysitter when she came to our house. 

Then when Grandpa came to move the tractor, Teddy got a ride. And I got one of the best pictures.

Hard to tell who is happier. Who am I kidding? It's Teddy.

Our Happy Place

We spent the past two months under Safer at Home, which was scheduled to end May 26. Our state opened up, so to speak, nearly two weeks early with absolutely no warning nor planning. The decision to open up for business had nothing to do with COVID-19 and everything to do with the politics. Given our risk factors with Teddy and myself, we will continue to take all the precautions we can and minimize our interactions with others. 

That means we head to our land when we can because there's wide open space without other people. The boys can run reasonably free, although Teddy still requires quite a bit of supervision, and we can all enjoy nature. We managed to sneak away Monday evening to spend the night to explore all day Tuesday for my birthday. It was also special because it was our first night sleeping in our bunk room in our garage. 

This boy loves his shovels and dirt. Notice his butt scootin' trail.

Although we didn't get to sleep until shortly after 10 p.m. because the boys were so excited to run around and play when we got down there around 7 p.m. That didn't stop Teddy from waking up at 4:45 a.m. to start the birthday celebrations. The boys played fairly quietly and decorated the room while Dave and I attempted to ignore them and snooze a bit longer. 

So happy to dig in the dirt or the sand.

We spent our day putzing around the garage with a few projects, building a log fort to make good use of our many downed trees, foraging for ramps and morels and hiking together to explore some trails near our land. In short, it was an absolutely fantastic day. Now, mind you even a fantastic day with Teddy involves several heart-stopping moments to catch him from falling into the river (as he heads there on purpose) or beat him to the decrepit death trap of a deer stand. 

 

Family hike ... for the first 5 minutes when Teddy hiked on his own.

We are so grateful for this piece of land for us to escape from the stress of our everyday life, enjoy each others' companies and make memories. 

No Field Trip Fun

One of the worst things that can happen to most children is to be sick the day of a field trip (or holiday party). That's exactly what happened to Teddy Friday. He woke up with a 102.4 fever, so he absolutely wasn't going to school. That meant he missed an all-day field trip, riding his beloved yellow buses, to play soccer, swim and ice skate at the YMCA. As much as I was dreading the physical exertion of chasing him all day as his chaperone, I was looking forward to all the smiles and joy because it was a perfect field trip for Teddy all based around play and not about sitting to learn.

But, the silver lining to the cloud that turned out to be strep throat was that Teddy didn't realize he was missing out on anything because he was too busy living in the moment. He got a whole day with mom to play, destroying our house and dancing to awesome music. (He typically doesn't get the memo that when he's sick he should take it easy, nap and rest. It often barely slows him down, especially when he's medicated with Tylenol and Ibuprofen. And with that fever, you can bet he was on a rotating cycle.)

Such a happy kid, even with strep throat. 

So, although he wasn't feeling the best, he still made the most of his day. That's the great thing about Teddy is that he lives in the moment. It doesn't matter what he's missing because there's usually something great about the exact moment that is happening. Unless you don't give him that banana that he really wants because that is not a good moment. I swear I've never seen anyone look so utterly defeated and wail so loudly that they couldn't eat a second banana.

I challenge you to challenge your inner Ted. Find the joy in your moments today. It's there for you to appreciate ... unless you really wanted that second banana, too, and someone stopped you.

He was enjoying snuggles with Dad today. Or trying to steal the phone.

If You Need a Smile ...

... Teddy has one to brighten your day.

Teddy lives in the moment and loves life more than most. Choose happy.

DreamDrive

We live in Wisconsin, which prides itself in the Green Bay Packers. There's tremendous support for the team, and the team makes itself a part of the community in various ways. I'm not sure how many other football teams have their fans come out to watch practice, lining up the entire way from the locker rooms to the practice field to cheer for them, wish them well, snap pictures and hope for an autograph ... oh, and loan them a bike. That's right. It's a tradition that kids line up with their bikes, no parents allowed inside the gates, hoping to have a player ride their bike across the street to the practice field. Kids ride along, run along and sometimes have really creative bikes designed for two people. It's a really cool experience that you won't find anywhere else.

Now, Teddy could care less about football because he has minimal interest in television, but he really likes people. AJ is a Packers fan, and we happened to have a connection who knows Teddy participates in myTEAM Triumph. I say connection because her husband works for the Packers organization, and he was willing to work with us to arrange a rider for Teddy's adapted bicycle.

Teddy thought Wes was pretty darn cool. I tend to agree. 

We had arrangements made for today, and we got a specific time to arrive to avoid having to wait in the heat. This was the only way we'd even attempt this because something like this would either be amazing with Teddy or an absolute disaster. There's absolutely no way we'd have been able to line up early with all the other hopeful kids and wait on the chance that someone would ride with Teddy. He wouldn't have lasted more than 15 minutes, much less the hour or more that we'd have needed to wait. We were able to hang outside the gate instead and sneak Teddy inside right before the staff closed it for all the players to come out (and trust me, even that 5 minutes was tough for Teddy to wait).

Teddy and AJ with our new favorite Packers player, Danny Vitale.

Danny Vitale is a fullback who's been making quite the impression at training camp this year. Today he made quite the impression on our family because he strode right up to Teddy, introduced himself and guided Teddy's bike down DreamDrive to training camp with AJ riding right next to them. I chased along snapping pictures as best as I could with an idiotic grin on my face because it was really cool, especially when I heard other fans saying things like, "Oh, look at that. That's awesome!"

Teddy loved the attention. And didn't look where he was going. 

See, Teddy doesn't care about the Packers. He doesn't get the concept of sports or professional athletes. As a family, we cheer for the Pack, so this was cool in that regard. Teddy likes people, so he made a few new friends today. But it was as much about creating visibility of kiddos who are different like Teddy who are still very much a part of our community. He's the kid with the knee-high braces that Mom made him wear today in case he was running or walking a lot to be part of this experience. He's the one who has the bike that costs more than probably any other kid's bike because it's an adapted bike that holds his feet into place, supports his core, theoretically allows him to steer and has a jousting stick for when he's driving like a crazy kid. And he's also one of only two kids who showed up wearing bike helmets because apparently bike safety is not a key factor in this experience. At least he has a really cool bike helmet that makes him look like the rough and ready kid he is. Poor AJ just looked like a dork. Whoops. At least he was a safe dork. (Gosh, I'm going to be in trouble when AJ reads this blog post. Sorry AJ.)

There's a cool picture of Teddy on the Packers web site from the DreamDrive today. You can check it out as number 16 of 17 pictures in this gallery.

Today was a really cool experience for all those reasons. I ducked out of work for an hour and got to witness an incredible experience for my kiddos. I'm extremely grateful for our connection, her husband who was so nice and for Danny being willing to work with us. And today wouldn't have happened without our amazing sitter Bri who is probably the only person outside of Dave or I who would be willing and able to wrangle two kids and two bikes to a very crowded Packers practice.

I'd be lost without Bri. She's amazing. 

We're pretty darn lucky.

#runlikeangels #mttambassador

We Ventured on Vacation

Our family is known for its adventurous vacations, road tripping across our country to explore our national parks. This year's vacations look a bit different because we're extremely fortunate to experience Disney this summer with Dave's family. That's going to be far more adventurous for us than any of our previous trips. 

We also had a reason to be in Tennessee a few weeks ago to spread my grandfather's ashes on his birthday, so we decided to pull the kids from school for a week to enjoy and explore the areas. We headed down past Chicago on a Thursday night and made it down to Tennessee by late Friday. I was amazed at how well the children rode the entire trip. We had barely any tears through the entire trip ... at least due to car rides. 

This was the first time the boys met my grandmother (and much of the family on my mom's side). They were welcomed with open arms, and Teddy couldn't have been more excited to see a lawn mower sitting in the yard. My aunt alternated her time between giving Teddy rides on the mower and playing games with AJ. Both boys adored her, and I appreciated the chance to visit with some of my family while they were playing with her. 

Teddy spent much of his time on this lawn mower, along with anyone he could grab.

Saturday and Sunday were family-filled days with perfect weather. It was really neat to spend time with family that I rarely see and actually get to know one of my cousins. (AJ was completely smitten with her and describes her as my really nice cousin who likes cats a lot.) 

Teddy snuggling for a moment with his great grandma under the supervision of his uncle.

We had talked about having my parents keep the boys for one day, and I even got them to agree to taking them overnight. However, that overnight was something that sounded good in theory but not in real life when Teddy doesn't sleep on vacation. So, we kept Teddy for the overnight with plans to meet in the morning to drop off the boys. That didn't happen because we spent 2 hours in the middle of the night up with a feverish Teddy working to get him soothed, medicated, monitored and back to sleep ... while looking up walk-in clinics and the nearest ER just in case. That sickness threw a wrinkle into our trip, but we managed to avoid anything worse than fever, constant running nose, coughs and less than $50 between the doctor visit, pharmacy and over-the-counter meds. 

So, Dave and I didn't get our day away from the boys because we wanted to keep a close eye on Teddy. We did that by hiking up the side of a mountain to a waterfall. It was a fantastic hike, despite the rain all the way down. We met up that evening for dinner with my family at one of our very few restaurant meals. Teddy does not sit well at restaurants unless he's really hungry, so it's just easier to eat snacks while driving and piece together meals in hotel rooms. Trust me, I'm a pro at making mac n cheese, quesadillas, chips and cheese and even whipped up some masterpiece burritos this trip. 

We spent Tuesday exploring Great Smoky Mountains as well, getting both boys their Junior Ranger badges. Before we left Wednesday, I ran to the accessible trail head while Dave and the boys ate breakfast. They brought me breakfast, and we enjoyed a family walk at a leisurely pace, stopping to enjoy the snails that we finally spotted. 

I love how much AJ loves Teddy. He's such a helper. 

Then we headed to Mammoth Caves. We spent some time exploring the land above the caves before heading below the next day for the accessible tour. It's great that there's a tour that makes the cave accessible for nearly everyone since strollers and backpacks of any kind are not permitted. We weren't sure if we'd make it through the entire tour because it's hard for Teddy to sit in his wheelchair for extended periods if we're not constantly moving. We did pretty well for a while, and then we had a phenomenal ranger who let Teddy hold her flashlight and even helped him shine her flashlight at the cave ceiling to look at crystals. She engaged him in conversation and did everything she could to help him enjoy the experience. We didn't make it through the entire tour, though, and had to head to the surface early with a ranger escort. Although that wasn't ideal, I couldn't have been happier with our experience with that ranger. (I did send an e-mail to the National Park Service afterward because I believe positive feedback is critical, not just complaining when something goes wrong.)

Teddy's aunt captured this great shot of Teddy.

The rest of our trip included stops at Lincoln's boyhood and adult homes, where we learned so much about one of our nation's greatest presidents. Seriously, Abe's mom died of milk sickness, which is such a weird thing. Google it. It's interesting.

But the highlight for the boys was the park that Dave and I feel shouldn't be a park, but that's beside the point: Gateway Arch. They both loved the tram ride 630 feet into the sky in the space pod, as we called it. Teddy thought it was so cool that he got to explore the top of the arch and peer out the window surrounded by 80+ of his closest friends. (So many people packed in such a small space!)

We ended our trip with a visit to Indiana Dunes, which we visited last fall when it was a National Lakeshore. It was upgraded to a National Park this winter, so we had to check it off our official list. It was the 50th national park for me and Dave, the 38th for AJ and 36th for Teddy. It also allows us to say we've visited all the national parks in the lower 48 ... again ... for now ... until they upgrade any more ...

Vacations have never been relaxing for us, and they'll continue to evolve over time as we adapt to Teddy's changing needs. For that Disney trip in June, though, I think I need to call Teddy's neurologist to find something that helps that child sleep for the sake of everyone's sanity!

I love hiking, even when my pack wiggles, giggles and tries to steal my sunglasses.

Happy Easter!

I've been absent from our blog the past couple weeks because we were busy preparing for, surviving (and enjoying) and recovering from our recent vacation. More to come on that another day.

In the meantime, I want to talk a bit about Easter and school. This past Thursday Teddy brought home several pieces of Easter artwork, crafts and treats. It seems like Teddy's teacher or one of his para-professionals made baskets out of paper for each of the kids in the class. He came home with this little basket with a cute bunny and a couple hard-boiled eggs. He also came home with a Rice Crispy bunny that his team helped him make. I knew to expect some fun things since his teacher sent me pictures earlier in the day.

Making his rice crispy bunny is quite the feat. 

It's obvious from the pictures how much effort his team puts into Teddy's success and happiness as well as his classmates. The picture shows the efforts of three adults: two helping Teddy successfully push the food into the mold, and one capturing the memories. I'm so grateful that the staffing ratio allows for these type of special projects, which work on so many of his fine motor, focus and other goals. Everything has the power to be educational, and it's no different for a child like Teddy who learns through doing and watching.

Today, in fact, I was amazed at how quickly Teddy mimicked his older cousin dragging a stick on the sidewalk. As soon as he saw her do it, he tried reaching down to do the same. It's hard at times to get his focused attention, but when he's interested in something, he's soaking it all in.

That's just a tangent from the point of this post, which is Teddy has an amazing team that works with him at school. I swear they have the patience of saints, and his teacher always finds so much positive to say. I'm glad he's so well accepted at his home school, both in his classroom and when he integrates with his kindergarten class.

He's so proud of himself ... mostly because he's in the teacher's chair.

And since the odds of a nice family photo tomorrow are slim, here's wishes for a blessed Easter from our family to yours.

Merry Christmas ... A Few Days Late and Vacuums Later

A belated Merry Christmas from our family! We spent the past week with good neighbors and family and are enjoying a quiet night before celebrating Christmas and birthdays with the other side of the family.

Highlights of our celebrations included a last-minute Christmas gathering with our neighbors from our cul de sac. Everyone happened to be available Friday night, so we had our 6 families gather at our house for an evening of margaritas, food galore, laughter and fun. We created a saran wrap ball for the kids, which was followed by a plethora of presents from neighbors. I was amazed that the boys received gifts from three different neighbors. One neighbor gave all 6 kids lights for the wheels of their bikes, which was pretty cool. Teddy kept taking one neighbor down to the basement to ride the exercise bike with him, and she was a great sport about it. It's really fun and relatively easy with Teddy to have our neighbors to our house, so there's already talk of a Father Time gathering for January or some other contrived excuse to gather and drink margaritas.

Saturday my family began arriving, which made the boys quite happy, particularly when their aunt and uncle showed up Sunday with the two fun-loving dogs. Teddy adores Zed and Rook, perhaps a bit too much since he lets Rook lick his face non-stop. (She's a puppy who's still working on boundaries ... lots of similarities to Teddy). He loves to chase them, wrestle with them and play with their toys.

Complete disregard for personal space & perfect for each other.

It's nice when there's a house full of people because there's more eyes to keep on Teddy and more people to play with AJ when he needs a break from Teddy. We added two more dogs and three more people Christmas Day with my uncle, his girlfriend and my grandpa. My grandpa usually winters in Texas, but he's been stuck here in Wisconsin much longer than he'd like while waiting for heart surgery. (Apparently that happens when you're 96.) That meant I got to spend Christmas with him for the first time since I was in elementary school, and my boys got to spend Christmas with him for the first time ever. That was the absolute best present I could have gotten this year, and I soaked up every moment.

96 years old wearing my super stylish Goodrs.

The boys got a plethora of cool presents. As soon as Teddy realized the presents under the tree were fair game, he was under the tree unwrapping as he laid there, regardless of whose gifts were in his hands. He was less interested in his pile of presents and preferred to go around the room opening whatever gift caught his interest, so he helped just about everyone. Among his gifts were two vacuums. One is a real one my aunt snagged at Goodwill, and the other is a toy Dyson from his running buddy. His face lit up when he realized he was getting vacuums for Christmas.

A boy and his beloved vacuum.

It's always a bit stressful to have extra people and dogs who don't always get along perfectly, but it's absolutely worth it for the memories we create. From card games to saran wrap balls to incredible Christmas light displays to a Christmas day run, walk and bike ride event, we made many memories ... and learned a few things to make next year's saran wrap balls even more fun.

Music, Cookies and the Slightly Creepy Big Guy

Last weekend we went to a Christmas music program sponsored by Easter Seals. I happened to see a flyer for it shared on Facebook and thought both kids would really enjoy the music program, which was led by a music therapist. Music therapy is about the only therapy we haven't done with Teddy, largely because I never came across a program.

Teddy loved the music and all the people. AJ loved dancing and singing and playing instruments. I loved that since it was geared for special needs that I didn't need to apologize for or even explain Teddy. Teddy moved around the room, sitting in every open seat for a few minutes and sometimes other people's laps. He didn't know any of them, but he's a very social little boy who doesn't have any respect for personal space. In other settings, that usually requires at least a quick apology, redirection of Teddy or explanation to his newly chosen friend. This was somewhere he could just be himself without the need for that.

Santa Teddy was pretty excited to be there.

By far the music and the people were Teddy's favorite parts of the event. AJ liked decorating the cookies and doing a craft as well. Then we went to see the big guy.

Now Teddy historically is a bit freaked out by costumed characters. He's becoming much more intrigued by them, but it's the only time he respects personal space. His bubble goes from non-existent to at least 3 feet, preferably more.

Note the skepticism on Teddy's face. 

This particular Santa lilur Teddy in with his bells, and Teddy got close enough for me to sneak a picture. Then when Santa helped Teddy into his lap, Teddy climbed down and ran away. So AJ stayed chatting shyly with Santa until Teddy and I returned from a safe distance. We even managed a few photos of the four of us with me serving as the safety barrier between Santa and Teddy.

All we're missing is Dave, unless he's really Santa?

It was a phenomenal event just because it was so welcoming for everyone with excellent volunteers. I'll definitely be looking to see if we can attend again next year.

Best Brother

We've often said that AJ is already a better person than we will ever be, simply because he's growing up with a brother with a significant genetic disorder. Teddy's CDG affects every aspect of life for our family, adjusting our version of normal.

AJ has spent 5 years of his life with a brother who has never spoken a word to him. Yet he's learned to understand Teddy's wants and needs, even telling us at a young age that Teddy wanted a drink because he saw Teddy staring at his own cup as he drank. He may not understand everything Teddy tries to communicate, but he's a pretty capable translator.

Not only that, but he interacts with Teddy just like anyone would with their little brother. He talks to him, plays with him and headbutts him more than I'd like to admit. He treats Teddy like a normal human being who needs a bit of extra assistance with things. It's been fantastic to see the times he interacts with others who may have a disability in the same way because it's simply how life is ... for AJ at least.

If you need proof that AJ is an amazing brother, then check out the thank you he wrote Teddy at school last month. I'll translate below in case you're not skilled in the art of reading first grade writing ... of a future engineer.

This is tucked away in Teddy's memory box.

Dear Teddy,

Thank you for being the best brother I've had. You will allwas (always) be my favorit (favorite) brothr (brother) I allwasa (always) had.

Sincerely,
AJ, yoru (your) best brothr (brother)

Happy Halloween!

All right. I know Halloween was yesterday, but we were too busy having fun for me to share last night. I know a number of children with CDG-PIGN are enthralled with Halloween, some to the point of asking about Halloween for months on end, and I believe Teddy is going to follow in their footsteps. There's something magical and inclusive about this holiday that is perfect for my little social butterfly.

Teddy absolutely loves people. If you smile at him, he believes you are his friend. He will even take strangers by the hand if they smile at him and interact with him. He's extremely curious as well and wants to check out our neighbors' houses and particularly garages when given the opportunity. 

So eager to keep up with the kids!

So a holiday where you get to meet a whole bunch of people and go right up to their houses is ideal for Teddy. We met up with one of AJ's friends in her neighborhood and started trick-or-treating with her neighborhood friends. We stayed with them for quite a while, although we kept dropping further and further behind because AJ couldn't run in his costume, and Teddy's run is a fast walk. That bummed AJ out, but Teddy had the time of his life.

When Teddy saw the front door where he was supposed to go, he made a beeline without any regard for ditches or driveways. He took the shortest path, fell quite a few times and picked himself right up to keep trucking up the house. Then he was more interested in trying to see if he could go inside the house than taking any candy. I carried his bag for him, and he managed to put a few pieces into his own bag, which is a great use of his fine motor and motor planning skills. There were a few open garages that required a bit of steering to keep Teddy from exploring, but he had such smiles and amazement on his face that he was able to go visit all these people. 

So cute and so easy to redirect to the next house!

Costumed characters can be a bit dicey for Teddy, but he was remarkably fine with everyone at Halloween. There were a few costumes that seemed to intrigue him, and none scared him. I think the fact that he had such freedom to go visit people wiped out any concerns about costumes.

I loved seeing his independence that he would walk, or run, toward houses with the other children. I imagine future costumes and years where he perhaps uses his talker to say "Trick or Treat" and "Thank you." Wouldn't that be amazing?

As for this year, it was perfect. We had amazing weather, the nicest I can remember in years. We spent nearly 1.5 hours trick or treating, with Teddy doing an incredible amount of walking with some breaks in his chair. Then we came home to have our neighbors over for margaritas and cookies, which seems to be the start of a new tradition. It gave the kids an hour to wind down after trick or treating and us adults the chance to socialize ... all in our house where Teddy has relatively free reign.

And what was Teddy for Halloween? If you couldn't tell from the pictures, he was a bull in a china shop. At some point, I am confident Teddy will exercise some strong opinions about Halloween costumes, but for now, he could care less. So I will continue to have my fun creating costumes that are made to suit Teddy's personality. 

Teddy's First Field Trip (A Post About Inclusion)

Yesterday was a momentous day, Teddy's first field trip. I know many eagerly accompany their children as was evidenced by the fact that each chaperone had a whopping two children to supervise on this particular field trip. For us, though, chaperoning wasn't optional. It was a requirement for Teddy to participate because he is not assigned a 1:1 aide at school, so no one could accompany him on this field trip because it would have left his classroom understaffed.

You see, this wasn't a field trip for Teddy's special education classroom. This was a kindergarten field trip, and Teddy's kindergarten teacher said they'd love for Teddy to be able to join them. The only caveats were that we'd need to chaperone and that the bus had already been ordered and didn't have a 5-point restraint, which is what Teddy has in his plan to avoid him driving the bus.

As much as I wished Teddy had a 1:1 aide, I had no problem attending as his chaperone. My logic is that his team does so much to ensure he's included in the kindergarten classroom as much as possible that we, as his parents, can do our part to help with that as well.

And the 5-point restraint was not necessary because Teddy was so darn excited to finally get to ride the real, big school bus that he sat as well as any other kindergarten student for the entire 1.5 hours of the drive. He was literally jumping up and down with excitement before we got on the bus. Honestly, he'd have been happy if his field trip consisted simply of riding the bus.

Sheer joy for a simple bus ride.

But when we got the the Little Farmer, which is essentially an apple orchard, he was more than happy to leave the bus to explore. As he was walking with his class, I let go of his hand because he was following the group pretty well. One of his classmates gasped and said, "Look! Teddy's walking all by himself!" I laughed and said that Teddy is perfectly capable of walking by himself, but that sometimes he tries to go places he doesn't belong.

Throughout the day, children called out, "Hi Teddy!" with an occasional one saying, "I'm going to play with Teddy" for the few seconds that are a typical child's attention span on a brand-new playground. Teddy's favorite parts of the really fun playground were the real-size wooden tractor that he loved to "drive" and the race track with all sorts of pedal-powered carts. He even caught a ride behind two different children in the two-person car with me pushing the car.

There were the usual challenges that occur, such as throwing himself to the ground when he didn't get what he wanted or collapsing into a pile of dead weight. I made the right call in bringing the backpack carrier to contain and redirect him during the tour and when we needed to transition from the playground to the lunch area.

Still, from Teddy's perspective, it was an incredible day. He got to spend a day outside, one of his favorite places to be, with his kindergarten class, which is also one of his favorite places to be. He went for a wagon ride behind a tractor, which is one of his favorite things. He picked an apple and the scavenged another from the ground because why not? He ate his entire apple, core and all, and then eyed up my apple core before I put it in the core bag. He sat on a pumpkin in the patch to pick it out and then carried it by himself part of the way back to the wagon.

Teddy spent 20 minutes of the bus ride home hugging his pumpkin with a giant, joyful grin on his face. He was so proud of his pumpkin.

Teddy with his beloved pumpkin.

And what did it take for Teddy to have this incredible experience? A teacher who extended the invitation and set the expectations for me. She had the same experience for Teddy as the other students, including a Bingo card if he wanted for the bus ride and a name tag, even though she wasn't sure if he'd wear it. (He didn't care much about the Bingo card but wore his name tag remarkable well.) It took her willingness to include him, even though it was one extra child and a little more coordination. And what was the result?

• A little boy who had the best first field trip ever, full of so many of his favorite things.
• A classroom full of children who were excited to have their friend Teddy join them on the field trip who saw that Teddy can do many of the same things they can, in his own way.
• A teacher who was rewarded for her efforts with giant smiles from a pumpkin-hugging boy.
• A mom whose heart was so full of joy and gratitude.

Detroit Free Press Marathon Weekend: We Run 4

I know I've talked about I Run 4 on this blog when the boys first got matched more than two years ago, but perhaps this post will capture how much this organization means to our family, specifically the two ladies who are matched with our boys. Teddy was matched a month after his diagnosis, which was a pretty difficult period of time for us as we came to terms with the information the doctors shared. His buddy Heather was a bright spot, with each post making us smile and every care package serving as a ray of sunshine. AJ was matched with Bridget a few months later after two unsuccessful matches that were just God's way of connecting us to Bridget. She's been an incredible buddy to AJ, supporting his interests, encouraging him to work hard and keep trying and filling his bedroom (in the best possible way) with swag from the dozens of races she does.

The runners representing for each of our buddies: AJ, Luke and Teddy.

This weekend we headed to Detroit as a family. We stopped along the way at Indiana Dunes National Lakeshore on a gloomy, rainy day, but we managed to explore with a short 3/4-mile hike, enough for the boys to earn Junior Ranger badges from a fantastic ranger who offered, multiple times, for Teddy to get the free National Parks lifetime pass that he's entitled to receive. We told him that we appreciated the offer, but we're more than happy to contribute our annual fee to the National Park Service each year as our way to support them. The really cool part was that he included Teddy right along with AJ and gave him a Junior Ranger badge as well.

We finished our drive to Detroit Saturday morning and headed right to the expo center for packet pickup. There was a minor snafu with my passport, so I spent some time with the problems and solutions people to make sure I was set to run my international leg of the relay race the following day. While there, we met up with Heather and her husband Steve, who were a part of our relay team. We continued through the expo and sat down with some snacks when Bridget arrived, walked up behind AJ and surprised him. (Honestly, I think she scared the dickens out of him because she popped right next to him, and he was completely focused on the food he just got.) This was the first time we ever met Bridget, and AJ was so excited to spend time with her. He went through the expo again with Bridget and her friends from her running group, Sole Family. Teddy used that time to thoroughly explore the expo center. He rode the escalators with Dave and I, took Heather to the wine bar and tried to sneak her espresso and showed Steve every single shoe shine station. In other words, he had fun.

Later that afternoon, we met Bridget and her husband Joey, along with Heather and Steve, at a cider mill. Cider mills are apparently Michigan's version of apple orchards. This one had animals to look at, a walking path along a river and delicious cider and donuts. We explored together and just enjoyed the opportunity to get to know each other better. It was a dreary, cold, rainy day, but the time together (and still-warm apple cider donuts if you ask Dave and the boys) was worth the chilliness.

Teddy took a shine to Bridget immediately!

Sunday was our relay race, and Bridget had custom shirts made for our relay team, complete with the number for our leg on the back of the shirts. She included all our running buddies and had the CDG logo for Teddy's diagnosis, along with my buddy's awareness ribbon for Down Syndrome. Since AJ has no logo, Bridget included the Superman one because she sent AJ a Superbrother shirt earlier this year. I chuckled to myself when AJ read the back of the shirt and immediately identified that as Superbrother for him.

Custom shirts for our group, thanks to Bridget.

Since it was cold and windy, not to mention it was downtown Detroit with 15,000+ runners and roads closed for the race, Dave stayed back with the boys. They went shopping and enjoyed the hotel's water park while we did the marathon relay. Bridget kicked us off, running over the bridge into Canada, where she handed off to me. I ran underwater through the tunnel back to the United States, which was extremely cool and just an awesome experience. I spent a portion of my time running thinking of my grandfather, whose memorial service was that day. As much as I felt like I should be there instead, my mom was understanding and supportive of us heading to the race still. I handed off to Steve, who ran the rest of the race, along with Heather, who was our official runner for the last two legs.

All smiles in the warm expo center after our marathon relay, team I Run 4.

Once all the other Sole Family folks got done running, we headed out to meet Dave and the boys for a late lunch. (Oddly enough, these full marathons take about twice as long as the half marathons I usually do.) We ended up at a tiny IHOP, but that didn't matter. It actually worked out perfectly that AJ got a booth to himself with Bridget for 1:1 conversation and attention. Several of Bridget's friends from Sole Family joined us, which was great since I already felt as though I knew them from all her posts and their welcoming us with open arms into their group throughout the race.

Best of buds, in person finally!

We had to say our goodbyes, until next time, to Bridget when we left the restaurant. Since Heather lives only a few miles from where we stayed (which made it convenient for them to graciously get me to the start of the race since I had no idea where I was going), we headed to their house for a little bit longer to visit. Teddy loved meeting their three dogs, cat and bunny, and AJ thought their shuffleboard table was as cool as their Harry Potter LEGOs. I'm pretty sure AJ knows a remarkable amount about Harry Potter from the 50 million questions he asked Steve.

Heather was a good sport with Teddy's odd requests, like playing in her bed together.

All in all, it was just incredible to spend the weekend with these two people, and their family and friends, who provide so much happiness, joy and support for our family. My heart is filled with gratitude.

Last Night was Special

Last night Teddy did another run with myTEAM Triumph (MTT), which is nothing extraordinary, although each run with MTT is special in its own right. But last night was extremely special, not because of the race, but because of the circumstances surrounding the race.

You see, Dave and I both were out of town for work, not getting home until late, so we couldn't make the race even though it started at 7:30 p.m. We were grateful for Dave's folks for coming down to watch the boys but weren't going to ask them to try to figure out how to get Teddy to a race with AJ in tow.

When I posted that we wouldn't be coming, one of my friends from work who also runs with MTT, Stephanie, offered to take Teddy to the race. She made it so easy to say yes, asking if she could pick up Teddy and bring him to the race. She made it sound like it was no big deal, almost like we were doing a favor to allow her to take Teddy, rather than the other way around.

You might not understand how remarkable this is. We are blessed with an incredible network of family, friends and co-workers who help us raise our children. I had a difficult time scheduling all the adventures for AJ this summer because so many people asked to spend special time with him. That doesn't quite happen with Teddy very often. In fact, only two times come to mind.

It's not that people don't invite Teddy places, but it's not for a solo, special time adventure. It's not that people don't like Teddy or enjoy spending time with him. It's a combination of who Teddy is with his needs and, quite honestly, the energy and strength required to keep up with him and redirect him as needed. He's simply a lot of work.

Don't get me wrong. There have been offers, but there's always a bit of guilt on our part because we know the effort required with Teddy is different than with AJ. So it takes someone essentially saying, "Can I ..." or "Here's what I'm going to do." That makes it easy to say yes and know that it's not a burden.

This makes me smile and gives me all the feels. 

Last night was incredible, even though we didn't get to be at the run or see the run. I heard Teddy had a fantastic time and loved all the glow lights and his cool doughnut medal (because why wouldn't a Run with the Cops give out doughnut medals). I know he had a wonderful time given his smiles when Stephanie brought him home, the look of joy on his face when he looked at Stephanie and the big hug he gave her before she left.

As I said to Dave last night once Teddy went to bed, "The best part of my day was when Teddy got home. Gosh, that sounds weird because that's usually not the case."

The Best of Both Worlds

We're in our third week of school, and we got off to a fantastic start with Teddy's first day. Today we stopped by the school to install a mini wall that we built to help Teddy's teacher create distinct spaces within her classroom. We had the chance to talk to both Teddy's teacher and his kindergarten teacher.

There was so much positive that his teachers shared in the short time that we were there. The kindergarten teacher wanted to discuss two upcoming field trips with us that she, in her words, would "love" to have Teddy join. One is a trip to a farm, and the other is a play. The only caveat is that since Teddy's classroom still needs the aides to support the other children is that we need to supply a chaperone to help Teddy be successful. Given how much effort his team at school puts forth to ensure Teddy has opportunities to integrate and participate in a wide range of activities, I have no problem with us attending as chaperones. (That's something that's normally fun to do, anyways, right?)

OK, I do have one problem with us attending. The play sounds a wee bit like torture to keep Teddy contained for 45 minutes during a show, but who knows, maybe he'd be so fascinated that he'd be an incredible listener and follow the lead of his friends. I'm hoping Dave is the one who gets to find out rather than me.

His kindergarten teacher shared how excited the children are when Teddy comes to the classroom. She said she makes an exception to her 4 children in one play area rule when more children ask to play with Teddy. (Doesn't that just make you smile?) She said there's two children in particular who have taken quite a shine to Teddy.

It was interesting to hear the questions her students had for her before Teddy first came in the classroom. She had talked to them about how Teddy doesn't talk, so she had quite the range of questions: Is he a robot? Does he have a mouth? Does he have ears? Can he hear?

She said it's been a great experience for all the children, including Teddy. She also said if she's having a tough morning that Teddy's smile always makes her happier.

This smile. But he's definitely not a robot. 

Then Teddy's regular teacher said that Teddy just has a way of connecting with each child in her class. She teared up as she told us about a child who does not like physical contact or interaction with others, yet Teddy can sit right next to him without any issues.

I think all this makes up for me wanting to sell or trade Teddy yesterday ...

Flying with myTEAM TRIUMPH

Anyone who loves planes probably knows about Oshkosh, Wisconsin because of Air Venture. Air Venture is a week-long celebration of planes and all things aviation that takes place here, which turns our tiny airport into the busiest airport in the world and draws a half million people each year. Although we've never went, we certainly enjoy all the cool planes and tricks that we can see while driving around town. (And this year AJ got to spend a whole day there exploring with his uncle.) Part of the festivities include a 5k race, which partners with myTEAM TRIUMPH. 

Team Teddy all smiles before the race.

We decided that since the race was at 7 a.m. that we could sneak in a quick run before heading over for my Grandpa's 96th birthday and dad's retirement party. I'm so glad we did because this was one of the races that I think Teddy enjoyed the most, simply because of the scenery and his awesome angels.

Normally crowds are cheering for all the myTEAM TRIUMPH captains, but there weren't many spectators for this race, even at the finish line. Most of the people we saw seemed a bit confused as to why on earth there were a bunch of people running that early in the morning. That's because we ran right through where people were camped with their planes, so they were waking up to nearly 1,000 people running around them. We got extra perplexed people in the beginning when Teddy's team was leading the race. 

Mindy sprinted ahead to take a few pictures.

See, Teddy had rather fast angels this time around. Our angels included Mindy and John, a mom and son who drove up from Milwaukee and spent the previous night just to do this race with myTEAM TRIUMPH before cross-country season started. How's that for commitment to make a difference? John is a senior, who was reluctant to share his race pace with the group and said he'd be good with 8- or 9-minute miles. My response to that was that I'd prefer closer to 9-minute miles, so I could keep up. His usual race pace? 5:45-minute miles. I think Teddy would love to fly with him at that pace.

I love that John wanted a post-race picture with Teddy.

Our other angels were Hannah and Angie, friends who were taught by the mom of another Captain years ago. They were amazingly sweet ladies who pointed out different planes and other exciting things to Teddy as we ran.

Team Teddy crossing the finish line.

Usually we only have 3 angels per Captain, but Teddy gained a few extra angels because another Captain couldn't make it. He absolutely adored the extra attention and loved all the sights along this race. It's always so amazing to me that people will give up their time to race with Teddy and our other Captains. I loved their curiosity about Teddy, their acceptance and their support. 

Fun memories and medals!

I definitely hope we can catch this race again next year!