Train Time

When you live in Wisconsin, you look forward to signs of spring. Whether it's early tulips and daffodils poking through the cold ground, the grass slowly turning green or the warmer days, they're all harbingers of spring. Teddy's favorite sign of spring, though, is the start of train rides at the National Railroad Museum. 

We're fortunate to live within an hour of this incredible train museum. Like our membership at EAA, one day I hope to go and actually read all the exhibits, but for now I get to enjoy bits and pieces, whatever I can read in the moments that Teddy stays in one place. Usually, though, he's on the go exploring all the trains. This museum is fantastic because so much of the exhibits are a "yes," not a "no" for Teddy. What I mean by this is that you're allowed to climb inside and walk through more of the displays than not, which is exactly what Teddy wants. 

I mean, really, it's not enough to just see a train. You have to walk through it, sit in it and, of course, try to drive the engines! That's how you experience the full joy!

One of the great things with a membership is that we can visit for 20 minutes if Teddy isn't feeling it (usually never the case) or as long as we want. A membership means a quick visit is just as worth it as a long visit when you're not paying an individual fee for entrance only to have a tough day and have to leave early. 

The best part of the membership, though, is the train rides that are included! There's a 20-minute or so train ride every 2 hours during the warmer months. A perfectly time visit starts with a train ride, followed by exploring all the trains and exhibits, capped off with a second train ride. (We might be the only family to double up on train rides, but I doubt it.)

Train rides are one of the best things!

This past weekend was the NFL draft, hosted in Green Bay. This meant the population of the city was more than doubled in size to host this event, which made people shy away from the city if they weren't there for the draft. It also meant the train museum ran train rides on the hour.

So we drove the hour north, hedging our bets that traffic wouldn't be a nightmare and that parking at the museum wouldn't be too bad. And we struck gold. Since so many people didn't venture out, the museum was remarkably quiet. In fact, we had the first train ride as a private train ride, during which Teddy befriended the conductor and made him sit right next to him. It was a great experience, fantastic to hear this kind volunteer who trains all other conductors take interest in Teddy and share how they are dementia certified and work to make it a great experience for all people. We got to witness this in action on the second train ride of the day when another child who plays in Teddy's baseball league was really excited and then agitated and sharing that with vocalizations. The conductor simply paused in his tour when necessary and picked right back up, never judging or making the experience anything less for anyone ... well, except maybe Teddy who still thought the conductor should sit right by him again. 

Teddy and his new best friend, all smiles!

When Darling Becomes Dangerous

This. This is one of my greatest fears.

Click here to read the news story.

That my non-speaking child will be perceived as a threat and lethal action taken.

I dread the day he ceases to be seen as cute and is perceived as a threat. It's easy enough for me to imagine a slightly different situation with Teddy that looks equally dangerous to people without context. Whether it's a knife, a power tool or any other "weapon," I know Teddy wouldn't process police commands, even if he understood them, quickly enough. I know that his hysterical giggles, especially when he thinks he's being silly, could be mistaken for maniacal laughter. I know he doesn't have the words to explain his actions, and that not responding can be perceived as non-compliance. I know his unsteady gait could be mistaken for alcohol or drug impairment.

I also recognize that I'm not alone in this. So many other mamas fear the same thing. For many, it's because our babies are different than society's norm. (Honestly, we're all different, so what is the norm?) But for others, it's simply the color of their babies' skin.

Rare

Rare. 

One in a million.

Carving my own path. Writing my own story. Changing the world without a word. 

Rare joy. A smile that lights a room. Saving grace from my shenanigans. Jumping for joy. Living in the moment. Laughter that captivates.

Rare strength. Tirelessly working. Adapting. Learning. Trying.

Rare love. My people are my everything. They understand without words. They hear my heart.

Rare friendship. Brothers bonded. Advocate, teacher and protector. Fierce defender. Fun friend.

Rare enthusiasm. Bouncing for buses. Tractor time. Train rides create treasured memories. Pontificating for pontoons.

Rare. Loved. Valued. Beyond measure. Beyond words.

Rare. Loved. Valued.

*This came from a training on diversity that encouraged us to describe ourselves in 100 words. I then completed the exercise for Teddy as I often serve as his voice. 

Spring Break Sickness

Ironically, Teddy got sick again this year exactly a year to the date as he did last year during spring break. Last year, his bout of RSV destroyed our spring break plans, and our spirits to be honest, because we had to cancel our flights and hotels. This year we had no big plans, so his crud only ruined his spring break and mildly messed up our adult plans for work and visits with grandparents. Thankfully, AJ still got 2 sleepovers and 3 visits with friends, plus a super fun escape room camp. I'm glad his fun wasn't hampered by the crud. 

Also, I'm grateful Teddy weathered his weeklong illness with no seizures. He had a pretty toasty fever of 102, and he weathered it overall well. He wasn't so miserable that he was trying to climb out of his skin, no vomiting (which for some odd reason makes him want to strip naked ahead of time?) and no hives. All in all, he handled it extremely well. Sometimes we forget to be grateful for these blessings.

He's the happiest sick kid you can imagine sometimes.

To be fair, it's a bit harder to be grateful when he passes the nastiness to me, and I realize just how miserable he was. It knocked me out of running for a full week (and it's still a wee bit hard to breath), but thankfully I'm on the very tail end of it with just occasional coughs. This allows me to be fully present for the Wisconsin Autism Conference, which is great learning opportunity for me.

With an extremely rare genetic disorder, there's minimal research and resources for PIGN and CDG, though our small community is strong and extremely helpful. With his autism diagnosis last year, it was almost overwhelming the amount of resources and learning opportunities that exist. 

Gratitude and Perspective

I just finished watching the movie Henry Poole Was Here. It wasn't a movie that I loved, but I felt too invested to not finish it. So I did. Without spoiling the movie, I will say I took away the message about living in the moment and enjoying the gifts we have. 

I'm trying this year, sometimes successfully and other moments not quite so much, to be present. Life last year was a wicked reminder that nothing is guaranteed and that our lives can change in an instant. (The ironic thing with cancer is that we feel as though our lives change in an instant, yet the change is already happening inside our bodies for some time before it's discovered. Perhaps that's too deep for this blog, but I'd like to think the same is true for positive changes as well ... that they're occurring long before we see the results.) Anyways, my intention is to be present and soak in the moments, finding the joy and happiness that exists each day.

Last week Teddy woke up at 3:30 a.m. Not for a bit before falling back asleep. No, he woke up for the day at 3:30 a.m. 

I'll be the first to admit my gratitude at 3:30 a.m. is outweighed by my desire for sleep. However, I checked weather and determined that, yes, indeed, it was warm enough to take Teddy outdoors. So Dave hung with him until 4:30 while I was super productive prepping cookies and breads for my bakery. Then we bundled Teddy in snowpants and all his gear (because warm enough in Wisconsin March still means snow gear to protect from the chill). And we headed to run with my friend at 5 a.m.

5 a.m. photos are a bit blurry.

Fortunately, I have incredible friends who aren't surprised when we have an extra running buddy for our early morning runs. Better yet, a few of them willingly offer to help push him! Teddy absolutely loves hanging with my friends and loves running with us (even if there's no popcorn and barstools afterward). So we did 5 miles of both cardio and strength training (as he weighs a solid 100 pounds now, plus his chair) before 6 a.m. 

Although we joked about being out of shape for pushing, I headed home from that run filled with gratitude that I can still run with Teddy. So many things have become more difficult or impossible through the years, and this is something we both love doing together that we can continue to do. 

And, let's be honest, few things make you feel more like a kickbutt human than pushing your son for a 5-mile run at 5 a.m. even if you wish he was still sleeping then.  

Winter Picnic

One of my favorite winter traditions is our winter picnic. This winter hadn't cooperated with a lack of snow, then insanely cold temperatures and then a very busy February. So when the weather looked beautiful this past weekend - highs in the 30s - I reached out to my dad to see if we could do the picnic, even though we wouldn't have Dave because he was in Florida for work.

My dad said yes, which is good because just a couple days later the unseasonably warm temperatures destroyed our snow. And snow is a crucial element for winter picnics because a winter picnic includes rides on the incredible snow tube contraption my dad designed and built years ago (probably 8 years?). 

So the boys and I headed to the farm for a fun-filled day. It felt different, for sure, without my mom, as she was always willing to ride the tube and entertained Teddy for periods while we got things set for the picnic. But she'd be happy to know the tradition continues and that more fun memories were made.

In recent years, Teddy has been skittish about riding the tube, preferring to ride the ATV with Grandpa instead. This year he was all in for several tube rides with AJ and asked to ride with Grandpa while AJ drove. He was all smiles, even if I couldn't capture them through the windshield of the ATV.

We had so much fun we weren't even jealous of Dave in Florida.

The weather was beautiful, the fire cooked our hot dogs and s'mores perfectly, there were tractors to ride and there were even a couple shovels for Teddy and Grandpa to dig in the snow together. (Of course, Teddy kept trying to dig my adult beverage out of the snow, where I was storing it between sips for supposedly safe keeping.)

As we pulled into our driveway at the end of the day, after our 2+ hour car ride home, AJ thanked me out of the blue and commented how much fun the day had been. Now that he's a teenager, those type of unsolicited thanks and praise resonate even more.

The boys convinced Grandpa to ride the Beast.

Love is Inclusive

I know I'm late to share this since Valentine's Day was nearly 2 weeks ago, but it'll be worth the wait. 

Teddy was invited to a Valentine's Day party, as was his entire class, at a local venue that's pretty darn classy. One of the local high schools coordinated this dance for all the middle and high school students to give them the opportunity to shine, as many of them aren't able to enjoy the traditional middle school dances or high school dances like prom, homecoming, etc. for various reasons. So this was a dance designed to let them enjoy music, dancing, food, friendship and fun ... and it was a huge success.

I'm so proud of one of our childcare providers, who happens to be one of the two teachers who coordinated this event. They reached out for various donations and were able to provide this event at no cost to students (except for if they wanted unlimited soda). Kwik Trip, a local gas station that's a Wisconsin staple, donated all the pizzas. The venue was donated, and a local bakery that I know quite well (OK, my bakery Nonesuch Bakery, donated paint your own cookies for all the goodie bags.) It was heartwarming to see the community come together for these kids.

Teddy and all the students had a blast! We got to see so many pictures of Teddy dancing and hanging out with his friends. Because all the schools in the district were included, he got to see one of his good friends from last year who's at a different school now. He was so excited to see our childcare provider, who teaches at the high school. He also knows her boyfriend quite well from family dinners at our house, so he was stoked to see Jake and drag him everywhere. 

"No, over there!"

It often feels, as parents of a child with disabilities, that we have to advocate, fight and ask for everything. And that's often the case. So when others go out of their way and make it easy for our children to be included and accepted for who they are, that means the world to us. 

Look at that joy!

So that's my takeaway for everyone who doesn't have a child with unique needs-look for the little ways to include others who may be different. When you open the door for us and invite us in, it makes our lives so much easier.