Live in the Moment

Christmas is a wonderful time of the year, celebrating togetherness and the spirit of giving. It's also a time of the year that brings back memories of Teddy's very first seizures on New Year's Day and seizures that landed us in the ICU right before Christmas another year. So we enjoy the season, but we're a bit skittish as well. We made it through Christmas relatively healthy, although Dave was under the weather, which dampened his fun (or maybe that was my family visiting ... just kidding).

Although Teddy enjoys playing with toys, he truly lives for the moments spent playing with others. He tried to unwrap a few presents from under the tree, but he spent most of his time bouncing around from person to person, ecstatic to have my entire family (plus 4 dogs) here. I spent much of my time watching him appreciating how much he lives in the moment and enjoys what's right in front of him rather than worrying about what will happen next.

"You'll shoot your eye out!"

When he opened his stocking, he found a peanut butter cup and immediately tried to open it. I lent a helping hand, and he shoved it in his mouth. Then he dug out an apple and headed toward the kitchen table to eat that, ignoring the rest of his stocking. Teddy loved that we had snacks on our counter for a couple days straight, helping himself to giant handfuls of cheese curds, nuts at random intervals and hey look there's cookies here for the taking!

It was unseasonably warm, so we got to spend some time outdoors for a few walks, even one Christmas night through the dense fog to enjoy the Christmas lights in the local park. I think I preferred the daytime Christmas Eve walk in the sunshine to the brewery, where it was warm enough to enjoy a beer and popcorn outside.

Enjoying a Christmas Eve stroll.

It felt weird to leave Teddy home with my mom while the rest of the family went to church, but it truly isn't worth the fight to have our entire family at church, even for Christmas mass. (Don't worry, my brother and sister-in-law and I accompanied Mom to Mass the next day, even if we went for a run while she went to church.)

Teddy enjoyed his gifts, and it's nice that simple things can entertain him (for as long as his attention span lasts). Even though we have oodles of magnets, we now have more. Same goes for giant waffle blocks, so they'll be able to build incredible creations. Teddy and AJ will get hours of fun with a gift certificate to the children's museum in Appleton.

I love, though, that the greatest part of Christmas in Teddy's mind is spending time with all the people. That's what Christmas is meant to be, and for now at least, he gets that.

Why is Teddy So Happy?

"Why is Teddy so excited? Why is Teddy so happy?"

Those were the questions I heard from one of Teddy's (higher-functioning) classmates as Teddy bounced up and down with joy and excitement. I explained he had seen the buses outside the school for the field trip and that he loved buses. She still seemed to have a hard time wrapping her head around the fact that he'd be jumping for joy over a bus, and one of the aides summed it up by explaining that we all show our excitement in different ways.

Teddy jumped up and down part of the way to the bus, rather than walking, because he was so excited. Then he giggled, made all sorts of excited noises and smiled like a maniac as we settled on the bus. It was a really short bus ride to the movie theater about 5 minutes away, but that didn't dampen his spirits.

So much joy on one little face!

He was excited to be with the entire school for the field trip, liked his popcorn and loved his pink lemonade. We still spent most of the movie walking around the rest of the theater, staring out the window at the beautiful buses that we couldn't go on and getting greetings from all the kids going to the bathroom and the teachers monitoring him. Heck, he even shared his Skittles with the principal!

It was really neat to see how he interacts with the different members on his team and getting to hear a bit more about what life at school is like for Teddy. I learned that Ms. E goes with him to most of his specials (like art, gym and music) as well as when he integrates with his first grade class. She's part-time right now but will be full time next semester. I learned that one of the aides is capturing pictures throughout the year with hopes of making a yearbook of sorts for the kids. I learned they sign stand up when they ask Teddy to stand instead of his flop and drop move. I learned what I already knew: they're amazing, caring people who do what they can to support each child in that classroom.

Field trips with Teddy are a physical workout, no doubt. But they're a glimpse into what we never know because we don't experience life at school for him. He's a little boy who's known by teachers and students alike, greeted and welcomed and clearly holds a special place in his team members' hearts.

All smiles on our way to the movie theater!

The Giggles

One of the wonderful traditions in my husband's family is a Christmas party where the majority of his mom's family gathers at a hall. They need to rent a hall because his mom is one of 13 children, so there's lots of aunts and uncles, more cousins and now more second cousins than most in attendance can name. All the little children tend to gravitate to the gymnasium, which I swear they barely heat in winter, to run and play.

Teddy loves the bleachers in the gym, climbing up and down them, making others sit next to him and generally spending a lot of his time there. That is great, until he notices the stage, which is supposedly off limits. Other children go on the stage, but we do our best to keep our children off to avoid getting into trouble, particularly Teddy. Once he notices the stage and how fun it appears to be, it's sometimes a physical struggle and tears to keep him off both sets of steps, one on either side of the stage.

This year, however, it became a game that was great fun for him and a pretty darn good speed workout for me. He'd take off for the stairs, and I'd dash past him and sit on the stairs. He'd start giggling and turn back toward the other side. I'd beeline past him, sit on the stairs and he'd keep giggling. We continued this for quite some time, with Teddy laughing so hard that he fell over ... twice.

For whatever reason, it was hilarious to him, and I couldn't help but laugh as he collapsed into giggles. We both had a great time instead of a great fight over whether he could go up the stairs, which made for a great afternoon (although I was rather tired by the end of the party).

It's hard not to attend these parties and think back to the first years with Teddy, where it was so hard because we couldn't stop comparing him to the other children his age (or younger) who were far ahead of him developmentally. Time has helped us to appreciate the joy in what he can do, which is an awful lot. This little boy was running, giggling and loving life. And I was able to be present (physically and mentally) to soak up the magic.

Can't Stop The Feeling!

Teddy loves music, as long as it's catchy enough to grab his attention. When he hears the infamous "Baby Shark," he immediately stops what he's doing to find the music. When a song starts playing during movies or television shows, he often stops everything else and starts dancing.

Dancing for Teddy looks a lot like jumping, which is one of my favorite things. A few years ago, jumping seemed so far out of reach for him because of his balance and coordination, but now he jumps to show his excitement, to dance, and to convey all the joy inside his not-so-little body.

We discovered a few Christmas seasons ago that Teddy really enjoyed those annoying toys/characters that play music. So now we have a collection of about a half dozen that play various songs. When we first pulled them out of storage, Teddy couldn't contain himself as we loaded them with batteries and started the songs. It's been two weeks now, so they're not the constant obsession anymore, but they're still high on his list of likes.

I'm sharing both videos because they're just so fun!

Teddy's First Concert

If you've ever had the privilege to attend an elementary school concert, you know those performances aren't about the lovely singing (or shouting) qualities of the students. It's about how adorable they are while giving their best efforts and showing off their hard work. That's why it makes sense to include all children who are willing and able to participate, regardless of how well they sing ... or if they sing at all.

Teddy is non-verbal. That means he doesn't talk, and honestly doesn't make a lot of vocalizations aside from grunting when he wants something and laughing. He'll occasionally babble, but he's a rather quiet child unless he's supposed to be quiet and then somehow the non-verbal child is the loudest he could possibly be. But that doesn't mean he couldn't or shouldn't participate in his school's holiday concert.

This year was the first year that Teddy had the opportunity to participate in the concert. His teacher and the music teacher (and quite frankly all his support staff) worked with him the last several months, so he could practice the actions for the songs as well as work on the appropriate skills for a concert. His music teacher sent us the motions for all their songs, so we could have Teddy practice at music therapy as well. He spent a lot of time and effort practicing.

The night of the concert, he was extremely excited. I think he knew something special was happening, and he was wired when we got into the auditorium. Then again, so were a couple hundred other children who were bouncing off the walls. It was wonderful to see Teddy start bouncing up and down when he saw one friend in particular who's always sweet and kind to him. It was more wonderful to see her bouncing in her seat and trying to get Teddy to notice. She was mirroring his way of communicating with her, which was so neat to see.

Teddy was super excited for his concert! And super cute!

Teddy's teacher and aide were both there and excited to see him. His aide wasn't working with him that evening as she was supporting another classmate. Teddy's teacher was on stage with him, right beside him, to help him with the motions and make sure he stayed in place. Teddy used the walker he uses at school, not so much for stability as much as to create boundaries and the expectation to stay where he was. Teddy did an amazing job of staying where he was supposed to instead of wander the stage or making a mad dash to go crowd surfing.

Teddy may have been the only child who spent part of the performance watching the rest of his peers and clapping for them, but he was clearly loving being a part of the show. He did some of the motions on his own and many with the help of his teacher. There was even an entire song that the class only did motions rather than singing. The intention was to focus on rhythm, but it was so nice for a non-verbal child.

After the concert, Teddy came running down the hall (dragging his walker). He was so excited and happy, as were we. AJ insisted that we buy Teddy and his teacher both treats at the bake sale because both his teacher and Teddy did such a great job. AJ said that he almost cried happy tears because he was so proud and happy.

Mr. Skaaland is Teddy's amazing teacher!

There wasn't anything extraordinary about Teddy's performance. He didn't have a special part to play. He just got to participate in the fun, like any other first grader. And that was extraordinary.

Lost and Found

Teddy and I were flying solo this weekend while Dave and AJ spent some quality time at the land. This morning we ran errands, and Teddy sat nicely in AJ's car seat. That's not always the case, since Teddy can unbuckle himself from that seat, which is why we reserve it for short trips. I didn't have the garage door opener in the vehicle, so I hopped out to open the garage door when we got home. I pulled in, parked and took the first load into the house, shutting the garage door as I went. I dropped the load and returned to the car for the second load and immediately noticed something was missing: Teddy.

It's normal for him to remain in the car while we unload or to unbuckle and play in the garage. This was not normal.

I immediately realized he had snuck out before the garage door shut and had a 30-60 second head start on me. I opened the garage door, frantically scanned outside, double-checked the garage and quickly called in the house for good measure.

Then I sprinted around the house, looking for any signs he went into the pond. Seeing none, I dashed up front and was ready to beeline to the neighbor's open garage door when another neighbor called that she had him.

Her boys had seen Teddy walk across their yard without me right behind him, alerted their mom and went after him. He made it to the next neighbor's house, where I found her holding his hand.

Teddy and I returned home with my heart racing. He may have only been gone for realistically 2-3 minutes, but that's long enough for something horrible to happen. Without the ability to speak and with water literally in our backyard, there's an awful lot of potential for awful to happen.

Thankfully, that wasn't the case today. We returned home safely, where I promptly thanked my neighbors via texts. We have incredible neighbors, and Teddy's guardian angel definitely has its hands full.

We went to the park this afternoon to make some positive memories. 

MTT Season Celebration

Tonight our home was full of friends made through myTEAM Triumph (MTT) to celebrate the end of the 2019 running season. For those who follow the blog, we got connected with MTT right when Teddy turned 3. It's a group that pairs able-bodied athletes with individuals with disabilities to give them the opportunity to participate in athletic events, most commonly runs although duathlons and triathlons aren't out of the question.

The group is so accepting and welcoming of all individuals and their families. We look forward to the start of training runs each year and realize when we attend the first one how much we missed it through the winter months. The season typically wraps up in early October, so we hosted a gathering to enjoy everyone's company again.

We had 4 captains with different personalities, abilities and disabilities, along with their families and a few of our regular angels and crew members. We had an abundance of food, but more importantly smiles, laughter and conversation. One of the angels brought a box of toys to share, so everyone had fun playing with "new" toys and even got to keep some of the toys.

This group is such a safe space for us, a place where Teddy is wholeheartedly accepted. He can grab anyone's hand and attempt to convince them to do anything, including climb into rather small waffle block creations for a grown adult. And they will. We all look out for each other's children, so we all get a chance to converse.

Heck, I even found someone to hang out with our boys for a couple hours Thursday to cover a gap since Dave will be out of town for work while I had a running event planned. And these are people who I'd trust because they have either raised children with significant needs and/or willingly spend their time every week volunteering with our Captains. They're solidly good people, and it is such a blessing to be a part of this organization.