Hello, My Name Is ...

None of us probably give a second thought about introducing ourselves. In fact, there's probably very few introductions that stick out in your mind. You might remember meeting someone new, where your friendship started, etc. but likely not the exact greeting.

You probably wonder where this is going, unless you read my Facebook post over the weekend. We visited a store this weekend, and I was wandering the aisles pushing Teddy when a sales associated asked if we needed any assistance. I replied, "No thanks, we're good," and continued browsing. She then looked directly at Teddy in his adaptive stroller (think mini-wheelchair without all the bells and whistles) and asked him, "How about you? Are you good?"

Right away, I was impressed that she took the time to engage directly with Teddy, who's clearly not your typical child. I asked Teddy if he could tell her yes, and he signed "yes" in response to my verbal prompt. And then I continued browsing because I thought we were done with the interaction until I heard the sales associate say, "My name is Ashley." I looked back toward her to see her signing what she was saying aloud.

I was shocked for a moment and gathered my wits enough to say that we're not quite that advanced in our signs yet, but that we know "treat" and "thank you." She said those were important words to know and encouraged us to find her if we needed any assistance.

Her introduction will stick with me for years. I was able to reach a manager at the store to let him know how much I appreciated Ashley's interactions. Not only did she engage with Teddy, but she was able to speak his language and acknowledge his answer. 

I think sign language is undervalued as a second language. I realize that so many have their own "slang" within sign language or their own way of signing when they aren't hearing impaired but are non-verbal. For example, Teddy uses the sign for candy for "treat," and realistically a lot of signs end up with Teddy pointing to his mouth where he wants the food to go. Still, we can understand him, and with continued practice, others like Ashley will be able to communicate with him as well. 

A Photo Series by Theodore

This weekend Teddy stole borrowed my phone this weekend. He took a series of photos that I'll share here to give you a glimpse of what he sees in life.

The vantage point from the spinning chair, one of his favorite spots.

He's not drunk, I swear!

He opted for a side profile for this shot.

The final photo showcases the upstairs railing that he uses as his launching pad.

Word of the Day: Honack

The non-English word for this week is "honack." It's a Bavarian dialect word that is a person who makes a mistake and then proceeds to try to fix the mistake by making more mistakes. The example my German friend gave me when explaining the word was a person trying to cut a board for a table, but they don't cut the board straight. They then proceed to try to get it straight and keep cutting on this side and that side and end up with just a pile of shavings. The wooden board is then "vehonackelt" by the "honak." 

My friend was sharing that they call their daughter a little honack because she constantly makes bigger messes simply by existing. I understood immediately because my response to her example was, "So everything Teddy touches is vehonackelt?" She gave me a thumbs up and laughed. 

It's true, though, that Teddy will try to help with something and lacks the fine motor skills, or gross motor skills, or comprehension to do the task as intended. For example, he saw his grandpa pouring a drink and immediately ran to help, by lifting the end of the pitcher suddenly. Great intentions, but the end result wasn't as helpful as intended. 

My honak after eating ice cream before he "cleaned" himself.

However, I love that Teddy desires to help. He wants to help, he wants to be an active member of the family and he knows what things should be helpful. Eventually his skills will catch up with him that his help becomes at least more helpful. 

Until then, I'll practice my new German words and try to appreciate the help he provides.

Weltschmerz

I've never heard of the word weltschmerz until I read a book called Running is my Therapy by Scott Douglas. In there, he described weltschmerz as "a German word meaning sadness about how reality doesn't live up to one's hopes." His description was centered around his diagnosis with depression and how that word captures for him the struggle with reality, how he fits into the world and what truly matters.

When I read that passage, the word itself resonated with me because I've often said that disappointment comes when our expectations aren't met. We get frustrated, upset, sad and stressed in life when our expectations don't become reality. If we can set aside the expectations and live in the moment, our lives are more fulfilling.

This sentiment resonates with me. I have the the saying, "Love the life you have, not the life you expected to have," resting on one of our family pictures. It's true of everyone, but it's especially true for me as Teddy's mom.

This is an ordinary moment in the life I have.

There's a poem called Welcome to Holland, along with a follow up that addresses the emotions years later. I've heard from many parents of children with disabilities that these poems resonate with them, ease their sorrow in the early days of diagnosis and put words to what they're experiencing. In my mind, Welcome to Holland could be summed up in a single German word: weltschmerz.

Putting a word to this harder to explain sentiment is handy to me. It doesn't change the life we have, but it gives me a word for the feeling that comes when I forget to live in the moment. Now I just need to learn a beautiful German word that captures the essence of living in the moment to counteract any weltschmerz I might experience. 

Just Another Day

 I mean, who doesn't have an inflatable raft inside a tent that's set up in their garage? Wait ... that's just us?

He looks rather serious here, but he really enjoyed this.

Dave found this raft on clearance for $17 and thought it was absolutely necessary for our land. We intend to put a life jacket on Teddy and see how he fares in his own rowboat (with adult supervision nearby but out of paddle reach). Teddy loves paddles and always tries to steal the paddle for the stand up paddleboard, but he's not the least bit cautious about where he swings the paddle. The advantage of this boat is the paddles lock into the boat, preventing him from wildly swinging them. However, that doesn't mean he can't get in a good jab if you get too close or if you're in the boat with him ... hence the reason we think it's best to send him alone. 

Even if the raft is a bust in the river, it's been a hit in the garage. He's enjoyed boating inside the tent, which was set up to dry out after our camping trip. This may look ridiculous to others, but it's perfectly normal in our world. 

The Return of Training Runs

Well, that caption is a bit misleading. MyTEAM Triumph (MTT) has been doing training runs for quite some time, with only a relatively short hiatus due to COVID. However, we only ventured out this summer for training runs while keeping our distance still. That means rather than sharing pushing duties with other angels, I'm responsible for pushing my lunk of a captain. (OK, he's the lightest captain at the training runs, but still ...)

Although I'm still responsible for pushing Teddy, we both get some socialization. We get to see our MTT friends. Teddy gets to venture into his beloved trailer. Seriously, the first training run we returned to he used a bungee cord to attach himself to the trailer. It's good for both of us. It's also a nice break for AJ and Dave to have some non-Teddy time.

The heat doesn't faze Teddy. It fazes me.

But I swear every Monday is the hottest day of the week. If you look closely, you can see Teddy's holding a squirt gun. We took along two squirt guns for Teddy. He spent much of his time squirting himself and drinking the squirt gun water. He did have fun squirting a few of the other angels and captains. He even managed to squirt me a few times, which was seriously needed. 

I doubt we'll make it back to events yet in 2021, but I'm crossing my fingers that next year we'll be back at events and at training runs every week. Until then, we'll enjoy the camaraderie from a bit of a distance. 

Relaxing Respite

Last week we had the opportunity to spend a few quality days with AJ. Between assistance from grandparents and our "adopted daughter" Sigrid, we were able to arrange coverage for Teddy. We headed north to the upper peninsula of Michigan to one of our favorite places: Pictured Rocks National Lakeshore. 

We've visited Pictured Rocks nearly every year since 2009. We've done the boat cruise to see the beautiful lakeshore from Lake Superior. We've hiked to a frozen waterfall in winter. We've camped in the traditional campgrounds. We've hiked 45 miles from one end of the National Lakeshore to the other end. It's absolutely beautiful and yet unpredictable. The weather can be amazing or it can be brutal. The water is usually freezing, but occasionally it's warm enough to truly enjoy. The stable flies can be merciless. The waves can be non-existent or they can be 10 feet high. 

Despite it's unpredictability, Pictured Rocks has grown increasingly popular in the past 5 to 10 years. We first discovered it when it was relatively peaceful, and now visitation has increased tremendously similar to other national park sites. In our words, it's gotten far more "people-ly," but we're still able to find our peace there.

This was our third year hiking and backcountry camping. That means we take everything we need for a couple days in our backpacks. We have done with when AJ was 6, 7 and now 9. He's quite the trooper for the 3.5-mile hike in to camp, especially with the promise of swimming and playing there. This year was the best yet, likely due to his age.

Still smiling on the hike out, although AJ was a bit weary.

We had perfect weather, water and bugs. We planned to bring in our stand-up paddleboard. All told, that meant an extra 12 miles of hiking (6 of those carrying the paddleboard). Although I can't say we'll do it every time, it was absolutely worth it. We were able to explore further along the coastline safely (given that AJ and I aren't strong enough swimmers otherwise). I am not built for cold water, so the paddleboard allowed her to play in the water with the boys. We were able to see the shipwreck by finding it with paddleboard. 

This was the cave that "burped" and tried to eat them when the waves kicked up.

As AJ collapsed into the water for the first time, he exclaimed, "This is everything I could dream of!" We tend to agree. 

As much as we wish we could bring Teddy to our favorite camping place again, it's just not feasible with his walking ability and the trails. We spent time contemplating how we might be able to get him in for a day trip. Honestly our best bet is to rend a pontoon boat, but then we need someone who's a boater to chauffer us. Any scenario that involves us hiking in is going to result in being exhausted chasing Teddy while there after the way in and way out.

And the reality is that both AJ and us need time away from Teddy. We love Teddy dearly, but it's a lot to be his brother and parents. It's a lot of patience. It's a lot of diligence. It's a lot of refereeing. It's a lot of pushing and shoving. It's a lot of guessing games. There's reasons that AJ likes the move Wonder. It reminds him of our life, probably including the line about life revolving around "the son." 

These few days allow us to enjoy each other. We can all have a bit of space, a bit of personal time and plenty of nature. We had a fantastic time and are already looking forward to next year.

Happy hikers enjoying Grand Portal.