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.

Simple Memories

It's opening day of Wisconsin gun deer hunting season, so blaze orange is abound in the woods. There's also plenty of widow's weekend activities for the women who are supposedly abandoned by their husbands in lieu of deer hunting. Dave technically abandoned me with Teddy while he took AJ to the land to work on garage projects and spend some bonding time together.

Teddy and I spent the morning cleaning AJ's room (seriously three hours!). Since he wasn't home I was able to help my little horder get rid of all sorts of recycling and garbage and junk that hopefully he won't realize when he gets home. After lunch, we needed a fun break, so we headed to the outlet mall specifically because they advertised horse-drawn carriage rides for widow's weekend.

Ted and I stalked the carriage until we caught it and hopped on. The guy was super friendly (and willing to give us longer rides because there weren't tons of folks lining up for rides). We got to ride on both sides of the carriage and then even hopped up by the driver. He let Teddy drive.

Teddy's not quite ready for his driver license. 

The best was when he told Teddy he was doing a great job, which was immediately followed by Teddy dropping one of the reins. It slid over the front of the carriage and was hanging behind the horse on the ground. The guy quickly hopped over Teddy and me to hang outside the carriage to snag it and then offered to let Teddy drive again as long as he didn't drop the reins. He was someone who was super friendly, easygoing and accommodating. People like that make it so easy to enjoy experiences, and this was one I knew Teddy would love.

And he did.

Making memories on a horse-drawn carriage.

Second Least Favorite Thing

I took AJ for his flu shot today, which he was dreading. As we walked into the room with the nurse, he announced that flu shots are "his second least favorite thing." That prompted me to ask what his least favorite thing was, and the nurse began guessing. She guessed cleaning toilets, laundry, dishes, and vacuuming before AJ interjected, "It's my brother having seizures."

Well, then, yep, that's my least favorite thing as well. That stopped both the nurse and me in our tracks as we agreed that's definitely not a good thing and that the flu shot isn't as bad as that.

I'm often amazed at what pops out of his mouth and how insightful and connected to his brother he is. I was also amazed that the nurse asked if he wanted to pick out a sticker for him and Teddy. I did a doubletake and asked if AJ had said his brother's name was Teddy or how she knew Teddy. I might have inquired, "Does Teddy's reputation proceed him?" She laughed and said that she remembers kids' names and faces from all our visits, and shared that Teddy and AJ were some of her first patients. She then shared that she's loved watching Teddy grow through the years, learning to stand and then walk and that his progress has been amazing.

It was one of those little things where I never quite realized how much she knows and cares about our children, and it was worth the tears for the flu shot.

Double the Art, Double the Fun

When I picked Teddy up from school Friday, I had the chance to talk to his para who is working in the classroom all November. I asked how his day was, and she said he got art twice that day. He went with the first grader students, stayed for about 15 minutes to complete his project and then left while the rest of them finished class. He also went to his adapted art class with the other students in his special needs classroom. (It's weird, I'm not sure what to call his class ...)

She also mentioned that on Wednesday he went to all of gym class with the first graders. She said they ran for 7 minutes, and that Teddy ran with them the entire time. He was tired after gym class, but it was so wonderful to hear that he had the opportunity to participate for all gym class. See, I watched Teddy's adapted physical education class once, and it was like watching a room of ping pong balls bouncing around the gym because each child needed essentially 1:1 support to successfully follow the instructions for the activity. So I fully understand the effort it takes to include Teddy in a gym class with 20 other first grade students, but I feel it's so critical to his development, acceptance, learning and social inclusion.

The thing that really gets me about that gym class is that this is the child who we wondered and worried for the first nearly three years of his life whether he would ever walk independently. This same child ran with his friends for the entire 7 minutes of running in gym class. Now, that is beyond amazing.

This inclusion with his first grade peers takes effort, no doubt. It also takes a lot of coordination with his teachers, both in his classroom and the first grade teacher. It takes the principal listening to my concerns and the director of special education as well. It takes a whole team of people to make sure the supports are there, so Teddy can run with the other kids. It's something relatively simple that makes me so happy.

And, in case you wonder why we doubted whether he'd ever walk, here's the link to his first independent steps caught on camera. Our little drunk monkey has sobered up through the years, but he still walks like he's had a few too many. Maybe that's why he feels so little pain ...

Fun Winter Run

Teddy and I joined in a fun run this morning. It was a 3-mile run at his school designed to be a fundraiser for new playground equipment. That's certainly a cause Teddy would be willing to support since he loves recess and climbing everything. We hadn't planned to attend, though, until his teacher reached out and asked if we would be running. He shared that he was leading the race on his bike, so agreed to participate.

Just about as soon as I committed, I regretted it because our plans for garage building at the land were greatly delayed. That meant I left Viroqua at 5:05 this morning to drive in the dark, snow and slush back to Oshkosh to run the 9 a.m. race with Teddy. That's right. 5:05 in the morning. Snow and slush on November 2. This was also the third time it's snowed this week. That's way too much snow way too early in the year, even for Wisconsin standards.

Anyways, I picked up Teddy from my awesome mom who's been helping a lot with the boys while we've trekked to build the garage. I also loaded a race chair that we borrowed from myTEAM Triumph into my vehicle. Teddy was super excited to see a race chair in our own vehicle.

Teddy and his teacher were both excited to see each other. I think the weather scared off quite a few o the runners and walkers, but Teddy enjoyed himself all the same. And so did I. It was beautiful weather for running, and it was fun to get out with Teddy outside of the usual MTT training runs. It'll be so nice to have a chair of his own that we can use whenever we want.

Teddy and his fearless teacher. Fearless Teddy and his teacher. One of the two.

It's one of those little things, that offer to join from his teacher, that prompted us to join the fun. It was a great way to show others different ways Teddy can be included and participate in activities. Running is also one of the few times Teddy is content to sit still, so I'll take that even if it requires me to be in constant motion instead of him.

Neuropsychological Testing ... Yet Another Thing I Never Knew Existed

I've always thought of myself as a person who is fairly well read with a solid vocabulary, but I quickly learned there's a whole lot of words I've never fathomed that I now know well enough to use accurately. Take neuropsychological for example. It sounds like a made-up word, like someone smashed two familiar words like neurology and psychology together.

But it's a real word, and today I used it in the context of Teddy having several hours of neuropsychological testing done at Children's Hospital in Milwaukee. Essentially, it's testing to evaluate where he is from a skills standpoint done through parent questionnaires, teacher questionnaires, specific activities to complete in person under the guise of play and then evaluation of  unstructured play with familiar faces. The purpose is to help us best understand Teddy, how to support him and to advocate for additional resources at school as appropriate. If I'm being honest, the last is probably my biggest hope, although there's some behaviors and the non-existent toilet training that were also discussed.

The testing went perfectly well today, as in Teddy was agreeable, in a good mood and typical Teddy. So his scoring should be accurate and give a good snapshot of who he is. He traveled well for the 3 hours of car rides for the appointment, handled the several hours of testing like a champ and even managed to get through the waiting room without making a spectacle of us. (Trust me, my level of acceptable social behavior for Teddy is much different than that standard for AJ, so we still get looks everywhere we go.)

But it was tough. I cried as I filled out the questionnaire I had to do today because it just sucks to see in black and white all that your child cannot do that others his age can do. I know it because it's our reality every day, but we get used to our reality and ignore the stark contrast. Filling out a form and checking only 3 boxes on a list of 25 or more items that Teddy can do is demoralizing ... and that wasn't even the communication page, which is usually the area Teddy lacks the most.

This is one of the many pages of fun forms. 

Hearing that he's made progress since he was tested almost two years ago is great ... except that progress still puts him at less than a 2-year-old average across the board. My goddaughter who turns two in February will pass Teddy in every skill by her next birthday, and that just sucks. It sucks because I know how damn hard he works for every bit of that progress, the 5 years of therapy it's taken us to get to that functioning level, the things we do every day to help develop those skills and how much I wish I could make life easier for him.

I don't want it to sound as though I'm in denial because we know who Teddy is and how severely affected he is with his CDG-PIGN. At the same time, though, hearing the words intellectual disability is like a solid kick to the stomach. It takes all my willpower to keep the tears in my eyes from rolling down my cheeks .... not because it's a surprise, not because I don't know that already, not because the doctor is mean, but because that just hurts to hear as a parent.

As parents, we want the best for our children, and sometimes it's so hard to understand how this can be the best for Teddy. That's why there's others who help us see the light on these tough days without them necessarily realizing it. My aunt came to visit as we were scheduled for several hours of testing. We got a brief visit, and she entertained Teddy while the doctor and I debriefed. And when I got home, still feeling down, I read her Facebook post (and stole her photo):

"A funtastic play date with Teddy this morning when he was here for his annual evaluation. I can’t describe the joy I feel to see his face light up when I walk into the room. He is a blessing."

The smile that lights up a room.

Without a Word

When I picked Teddy up from school on Friday for music therapy, the administrative assistant in the office told me, "Teddy is just the sweetest boy." She proceeded to explain that sometimes she helps get Teddy into the building in the morning if no one else is available. She said that when she opens the door and informs Teddy he's stuck with her that he lights up with his smile every time. Then she said that every time it makes her feel special and brightens her day.

This kid brings so much joy (along with all the stress).

That's the type of enthusiasm and joy Teddy has for life. When I came home late one evening this week and walked in the door, Teddy literally started jumping up and down because he was so excited to see me. Who else jumps for joy just to see you on a Thursday when they saw you 12 hours earlier? (I'm not going to lie. I still love that he can jump.)

The school nurse was also in the office, and I commented that I heard she had Teddy's kindergarten teacher visit while Teddy was at her office for his lunchtime medicine. She chuckled and said Teddy was pointing at her office chair that day, so she realized he wanted to sit in her chair. She not only let him sit in her chair, but then she pushed him out of the office and down the hall to his class. What other child could convince an adult to give them a ride down the hall like that ... without saying a word?

Before I left the office, Teddy's principal introduced herself since we've been chatting about the support and inclusion opportunities at Teddy's school and whether they have enough resources. She echoed their sentiments about how much she enjoys Teddy.

What was part of my routine every Friday was made special by others sharing how much they enjoy Teddy. And that is my ultimate goal for Teddy at school: I want him to be loved and accepted for who he is and what he can do. And it's clear that he is.

Happy Dance

Today we got this e-mail from Teddy's case worker:

Hello Kerry,   Great News. The Family Support Team approved long term support funding for the Axiom Race Chair!   Everyone wants to see a picture of you and Teddy in action after you receive the chair  J  I will talk with Adaptive Star next week. 

And then I proceeded to do my happy dance. This means that we'll have a way to go biking next summer as a family because there's no way that Teddy would still fit in our pull-behind carrier because it was a squish to get him in there this year. This means that Teddy and I can go for a run on the weekend together or join the local running groups who do evening runs. We tried a few times this summer, but the running stroller I have is not meant for a large 6-year-old. It barely worked until the last run we did, which was our last run with the stroller, because Teddy learned that it makes a cool sound when he drags his foot on the ground. It also feels neat ... until he breaks his foot or ankle.

The Axiom Race Chair is essentially the same chair Teddy uses when he races with myTEAM Triumph. We can (and will) order a chair large enough that it should last Teddy for years to come because he's ridden in all different sized race chairs. The same chair can be used for racing as well as being pulled behind a regular bicycle.

This is such a blessing for our family!

Win-Win-Win

This weekend Teddy and I spent a day together while Dave and AJ took care of a few things down at the land.We had quite a bit of fun snuggling, playing waffle blocks and generally goofing around, but it's nearly impossible to have a good day and a productive day with Teddy. A good day isn't productive. A productive day isn't good.

So, one of our friends' daughters came to hang out with Teddy for a few hours to give me a chance to get some fall projects done. My exciting alone time was pruning bushes, bagging yard waste, mowing the lawn with a hat and mittens, cleaning out the garden for fall, digging up flower bulbs, etc.

Meanwhile, Teddy was having the time of his life with his friend, who we'll call Alexa since that's what our Amazon Echo thinks we say each time we say her name anyways. Teddy adores Alexa because she plays with him. It's that simple, yet that hard. She spends the time playing with him each time she's at our house, following his lead and letting him direct their play. She does his bidding, and he thinks she walks on water. She's phenomenally patient with him, helpful when he needs it and even got him to lay nicely to get his diaper changed instead of squirreling away like he usually does.

Even on the car ride to take Alexa home, Teddy couldn't stop giggling and smiling at her because he loves her that darn much. He convinced her when we stopped at the grocery store to move right next to him instead of leaving the middle seat open between them.

I told Alexa that if she ever questions her self worth, which she shouldn't, that she just needs to remember to think of Teddy and how he sees her. It's hard sometimes in those teenage years to remember your worth and value ... but there's no doubting that if you've seen how Teddy looks at her.

It ended up being a great day. I got a couple hours of much-needed yard work done. Alexa got a self-esteem boost. And Teddy had the greatest time hanging out with his friend. 

One of the Tough Things ...

Scrolling through Facebook today reminded me of the same thing an e-mail did yesterday ... I can tear up for people whom I've never met simply because our children share the same diagnosis. The pain they feel, whether it's 9 years after losing their child, I feel. The emotions that go into whether to have another child, I feel as well.

Since there's so few of these CDG-PIGN kiddos, it's both easy and hard to carry a piece of each of them in my heart. It's easy because I can tell you the names and states or countries of most of the children in our group from memory, although I admit that's gotten more tough as we've added so many more families (comparatively) in the past year. But when you add one family a year, you get to know them. It's hard, though, because I feel a sliver of the pain they feel with their losses ... whether it's the things their child will never experience, the fear in hospitalizations and seizures that put life on hold, the turmoil of whether and how to have more children who may also be affected or the ultimate loss in the death of a child. And I know I feel just a sliver of their pain, not the entirety, but it's so real because it could just as easily be us. It could just as easily be Teddy.

It's been a tough week for some of our CDG families. I've cried two days in a row for families I've never met (although one I desperately hope to because of the friendship already built on shared experiences, hopes and fears).

I know we're not alone in this. Our CDG family is small, but it's the same for families touched by cancer or any other horrible childhood illness that robs children of their innocence and/or lives. It's joining a community that's incredibly tough in the face of challenges, so strong in advocating for their children, overwhelmingly supportive in times of need and understanding without explanations needed ... yet a part of you wishes you didn't need that community.

But we do because that's our life. I'm so grateful for our group of CDG-PIGN families. I'll shed my tears for them and snuggle my child a little longer because I can. 

Speed Demons

Last week we ran our final myTEAM Triumph (MTT) race of the year, Run with the Cops. It's a fantastic event that supports both Special Olympics and our local law enforcement. There's tons of police vehicles to explore, plenty of lights and sirens, oodles of glow-in-the dark stuff along the way and a rather incredible finish line food spread. Teddy's participated the past three years and enjoyed himself thoroughly each year.

This year we had the kink that Dave was out of town for work, there's no way AJ can run 3 miles and both Teddy and I were committed to running. Thankfully, one of the other Captain's moms hung out with AJ while we raced, so he had a great time with her.

Speed demons with their little devil ... and big brother.

Teddy loved his devil pitchfork that my friend Rachell gave him, as we all sported devil horns to be speed demons with him. His chair was lit up like Christmas (literally with green lights), and we finally made good use of the incredibly annoying police light/siren that he got for his bike a few years ago for his birthday. (Thanks Uncle John and Aunt Lindsay.)

It's a really fun run because it goes through the college campus, so there's oodles of college students cheering and handing out glowing items. Teddy loved his glowing antennae headband and actually did a really good job keeping it on for quite a while.

It's hard to say whether his favorite part was exploring the prisoner transport bus (because he loves buses), getting all the glow items or managing to eat two full-size donuts at the end of the race. It was a good night to be Teddy.  It was also a great night to be his mom and appreciate our village that makes these magical moments happen.

This was his first donut. Imagine his happiness at getting a second.

Super Swim Sessions

Teddy has done adapted swim classes through the local YMCA for several years now, and I know I've talked a few times about how wonderful they are. For a very reasonable price, Teddy gets matched with volunteers who spend an hour in the pool with him while I get to watch how much fun they're having and be glad it's not me wrestling Teddy.

These classes serve a few purposes:

1. There's always the possibility that Teddy will learn to swim independently one day, and this is how that magic would happen.
2. Even if he's not independently swimming, these classes are fantastic therapy sessions for him that incorporate his speech, fine motor and gross motor. 
3. Teddy loves being in water, so it's an activity that he enjoys.
4. We get a break for an hour where we get to see the joy on Teddy's face when we're not putting in all the effort, so we can truly enjoy it. (Or we can just get an hour of work done that wouldn't happen otherwise.)

We usually skip the summer sessions because we head to other pools, so we just do the fall and spring sessions. Hands down, our favorite are the fall sessions when the YMCA partners with class at the local university and has the students teach the swim lessons as the main part of their adapted physical education class. It's fantastic because there's usually two students matched to each participant, and everyone has such a great time once the students get past their initial nerves. 

He is such a lucky kiddo to have these amazing ladies as his teachers!

I heard tonight that another local college is looking at the possibility of doing the same program in the spring semester. That would be awesome because otherwise the program is largely supported by volunteers, so there's less help to go around. That's when I feel a bit bad about someone older than me having Teddy to manage for an hour by herself because, quite frankly, he's a workout. He's adorable, but he's a workout.

So, we'll see what spring brings, but for now we'll be so grateful that Teddy is matched with two young ladies who ask good questions, try different things and are already wrapped around Teddy's finger. 

The Little Things

Last night Teddy and I attempted a run while AJ was at his Minecraft coding class. There's a 45-minute window for us to run that lines up perfectly with a local running group's run, so last week we joined them, broke off early to be back in time and had a splendid time. This week, though, it was cool with gray skies and rain looming. I had checked the radar, and it looked clear for the next hour, so I thought we'd be fine.

The raindrops started before we even began running, followed by the the first lightening flashes within a couple blocks. Within 5 minutes, the rain was picking up speed with lightening and thunder quite plentiful. Teddy and I bailed as quickly as we could into a building just as the skies unleashed their full fury. Whoops.

Fortunately we were only a half mile away from where we started, and we still had 40 minutes to wait out the storm. Once the rain let up, we continued our run back to the vehicle. The streets were soaked from the downpour, and so were my feet as I ran through ankle-deep water.

I threw Teddy into the car as the rain picked up, and he was full of giggles at our adventure. See, Teddy likes the feeling of raindrops. And lightening and thunder don't faze him in the least. This was his idea of a good, fun time.

He doesn't fear the storm. He is the storm. 

After a bit of playing in the car, as Teddy kept opening the door because it was funny to have it rain inside, we headed inside looking ridiculous trying to carry Teddy and an umbrella. Then he discovered the giant gym with built-in bleachers at the rec department and thoroughly enjoyed the rest of our wait running around, giggling and exploring.

He finds so much joy in the little things. Sometimes he's remarkably chill and goes with the flow as our plans unravel and isn't disturbed by things that would concern others like rain storms or waiting for his brother to be done with class. Then again, other times, waiting is incredibly hard for him as was evidenced by the swim class that followed coding class. I get that, though, because it's hard when there's a pool right there that you can't enjoy.

So, we really didn't get much of a run, but at least Teddy enjoyed our soggy adventures.

Field Trip Fun

Field trips are a mixed bag of emotions for me.

I love to see Teddy included and have the opportunity for fun learning, just like any other child. I tend to resent, though, that one of us as parents have to take off work to accompany him on his field trips because there's not adequate staff to have someone accompany him. (I get that's an issue I should be able to resolve through the school, and I will address it through his IEP once we're done with some additional testing for him next month.)

Teddy made friends with the bus driver, who let him open/shut the doors.

I love to see his classmates who interact wonderfully with him, from the girl who holds his hand and pats his arm when he's upset that he has to wait and not freely explore everything to the little boy who sat next to him digging for dinosaur bones praising his digging and taking turns with Teddy. I don't like to hear that Teddy's not in the first grade classroom that often (per a kid's perception, of course) because he needs a staff to support him to be integrated. I know it's early in the year, and I know there's kids in any class who are a handful for the teacher to manage and that it's tough to add Teddy to the mix. But he learns so much from others, and the gaps between him and his peers will only widen each year. Now is the time to invest in the staffing to have him spend as much time as possible mainstream. (Clearly, you can see what's on my mind. Again, I have plans to address this properly through the school rather than just complain about it here.)

Bookworm Gardens in Sheboygan is definitely worth a visit with lots to explore. 

I love the kids who say that Teddy's their friend. I both love and hate the questions they ask because they're curious about Teddy. I will always answer any questions to help others understand Teddy because I'm Teddy's voice. It still hurts most times I answer why Teddy can't talk like others and how he can communicate instead. But there are now several kids in his class who know that clapping is how Teddy says, "I want." And there's also kids in his class who probably have ideas on other signs they can teach him. That's all wonderful, but it still hurts to spend a whole day watching Teddy and his peers who aren't his peers ... and to realize that his intentional classroom's wonderful circus of a gym class is where his peers are. Field trips are really only hard because I haven't fully mastered the art, skill or whatever you want to call it of acceptance.

Like I said, it's a mixed bag of emotions. 

Another Day, Another Race

One of the best parts of our summer is myTEAM Triumph, an organization that partners able-bodied athletes with individuals with disabilities. Teddy ran his first race with them shortly after his 3rd birthday, and we've loved every moment. Everyone is so welcoming and accepting of all our Captains. We've developed such friendships that others offer to take Teddy for periods of time at training runs or races or simply just take him to go exploring. 

Aside from the friendships, Teddy loves to run. He gets antsy waiting in his race chair before the race, but he loves when he's being pushed. He lucked out today and had the fastest team. (He came in second of the MTT teams because he walked across the finish line on his own.) He also had an angel who knows him from training runs, so not only did she push him for the race but then also wrangled and chased him back to where I was. 

Teddy wouldn't smile because he was too confused by the pace car in front of him.

Most often I'm running as one of Teddy's angels, but Teddy joined just last week for this race because they had an open Captain spot. So AJ and I spectated with cowbells. I helped push Captain Katie's chair while she walked across the finish line with her angels. Now that was something incredible to witness. Captain Katie worked for each and every step to cross the finish line, and her two angels supporting her were drenched in sweat by the time they crossed not only from the effort of running the race but also from supporting their Captain across the line. It was truly humbling to watch her effort and determination for the simple act of walking that we often take for granted. 

We still have at least one more race left this season, Run with the Cops, next week. That's always a fun race with lots of lights, doughnuts and goodies along the way. It'll be extra special this year because I've roped at least one of my Moms Run This Town friends into being an angel. It's pretty neat to combine my love of running and my love of Teddy. 

#runlikeangels #MTTambassador

Some Days, It's Tough to be Teddy's Mom

I feel like I've said this before, but some days it's just tough to be Teddy's mom. Or dad. Or brother. Or grandparent. Or any relative.

He's such a darn lovable kid, who approaches life with reckless joy and lives in the moment. He's happy more often than he's not, unless you're trying to make him do something he doesn't want to do. Sometimes it's those are the moments that it's tough to be Teddy's mom when you're physically trying to peel a 50-pound child who's only a foot or two shorter than you off the ground when he's melted there like a pile of jello. That's physically hard and wears at your patience rather quickly.

The harder days to be Teddy's mom, though, are when it's not the behaviors that make things tough. It's the days that you have to confront that our life is so different from reality for many people. The worst of those are the seizures that put life on hold, terrify us and leave us all worse for the wear. But there are other things that have a similar, albeit less traumatic, effect.

We're pursuing neuropsychological testing for Teddy because we think it'll be helpful for his team at school as well as for us to support Teddy in the best ways at home. In a perfect scenario, we'll learn some things that will help to minimize those behaviors I mentioned above. We've been waiting for 4-5 months for this appointment, and the first portion was a parent interview. That meant I spent 1.5 hours walking through everything Teddy can and can't do. Unfortunately, there's a lot more can't than can when you're asked to compare Teddy to a typical 6-year-old child. I had to chuckle when the only questions that didn't apply to Teddy on the ADHD screening were the two that involved speaking ... only because he doesn't speak.

It might sound weird because clearly we know all the things Teddy can't do that a typical first grader can. But it's such a normal part of our life that most often we complain about things being hard, but we're still used to it. It's the times that you're forced to write down and tell someone else exactly what your child can and can't do that remind you of the thing you try to avoid focusing on: how different your life is from others, from what you expected.

But, I've filled out all the forms now, so I'll give the teacher portion to his teacher, collect that and continue on with life until we do several hours of testing next month. I'll hope for the best that day and then relive all these feelings when we get the results in black and white. Still, it's worth the emotional roller coaster for the information we should gain.

A Blessing and A Curse

One of the most challenging aspects of Teddy's diagnosis is that he has an extremely high threshold for pain. That's dangerous on a non-verbal child who can't articulate what hurts and often shows no sign of discomfort until things are seriously wrong. When he's tired or upset, he will cry more easily for pain, but it usually takes a whole lot to faze him.

That turned out to be a blessing yesterday when we knew exactly how much pain and discomfort he should be experiencing. He was playing at the park with his staff, went down the slide and came off covered in bees (likely yellow jackets). His staff reported to us that Teddy got stung twice on the face, and that his staff got stung a couple times as well shooshing the bastards off Teddy (my words, not his). When Dave was helping Teddy out of the vehicle, 6 half dead bees fell off Teddy's jacket, and Dave picked off one more later in the house. Dave pulled one stinger from another spot. Based on the welts, our best guess is Teddy got stung 5 times on his face.

He had welts and was a bit swollen, and we immediately gave him Benadryl and kept a close eye on him for an allergic reaction as this was the first time he was stung. Aside from the welts, you wouldn't have known he was stung. No crying. No rubbing his face. No scratching.

I just got stung last week Friday, and that still itches at time. I used ice packs for several days and couldn't sleep one night because it itched so much. Apparently I'm a major wuss compared to Teddy.

We e-mailed his staff to find out how he reacted in the moment he got stung. The answer was that he cried for a minute and then seemed fine.

Five stings. One minute of crying.

It's a blessing and a curse, but yesterday it was a blessing.

Guest Post: Big Brother

This is a guest post by AJ, Teddy's older (and awesome) brother. He wanted to share his perspective on life with Teddy.

Hi, I'm AJ. I'm Teddy's older brother. My favorite color is blue. My favorite animal is a penguin. My favorite books are from Dr. Seuss. My favorite foods are from my mom and dad.

Living with Teddy is sometimes frustrating, but we try to work around it. It's fun to have Teddy around, but sometimes he gets into a lot of trouble because he thinks everything is safe. Unless it's not safe, then he just does it for fun.

Working with Teddy is hard at the same time as easy. Playing along with Teddy gets really easy. Sometimes playing with the neighbors with Teddy is hard because sometimes the neighbors don't get along with Teddy.

Teddy has a three-wheel bike with a handle to direct him in case he goes running toward a ditch. Otherwise, he's a good peddler and is kind of safe on his bike. But he aims for ditches.

Teddy's birthdays are really special for me because it's my younger brother's birthday, and it seems special for me to be his older brother.

My favorite thing about Teddy is his joyful little smile and his playful moods. I don't like when Teddy is a little too aggressive and kind of hits or kicks sometimes. But that's only once in a while.

I wish that Teddy could talk and tell us everything about himself. It would really be cool. I also wish that Teddy wouldn't have seizures because it would make life a lot easier not going to the doctors at the ER. But those wishes will probably not come true.

Brothers and goofballs. 

Best Bus Driver

We are so blessed to have Ms. Lori as Teddy's bus driver again this year. She was his driver to and from school last year for kindergarten, and she was the one who took over after winter break to finally get him to school on time for 4K (after a semester of frustration). She adores Teddy, and the feeling is mutual.

Teddy loves school buses, so he'd love to ride the school bus with everyone else. But he needs a bit more assistance to make sure he's safe, such as an aide sitting right by him or a 5-point harness to keep him in place. (Although, having seen other kids on AJ's bus, Teddy would fit right in sitting on top of seats and hanging out windows like he has a death wish.) So he rides a van with Ms. Lori and apparently quite a few friends this year (as last year was a pretty quiet ride to school).

Ms. Lori sings with Teddy, plays with him and interacts with him exactly as I'd want: as a little kid who likes to play, goof around and have fun. She always greets him with a smile and makes sure to pass along messages from school to home and vice versa if there's a need.

She goes out of her way to accommodate us, whether by looping back around when I realize I'm still wearing Teddy's backpack or coming a few minutes early when I had to be in to work early once. She puts Teddy's safety first and reports on how his staff are after school.

In all the stress of back-to-school routines, it's so nice to see a familiar face who knows Teddy and has his back. I mean, what other bus driver would come visit in summer just to have ice cream and see the boys because they all miss each other?

First Day of First Grade

Today was Teddy's first day of first grade! He was so excited that he was jumping for joy in the parking lot when we dropped him off. He saw quite a few friends, from the grandfather who always sees him after school, to the only para who is returning from his classroom last year to the person from the district who supports his entire classroom to the principal and the office staff.

My smiling first and second grade kiddos. 

Teddy's back in the same classroom as last year with two returning classmates, one brand new full-time classmate and a classmate who'll be there half days. His teacher is brand new to his classroom, one paraprofessional returned from last year and there's a brand new paraprofessional. His teacher was occupied with the new student, so Teddy hopped on a tricycle and was happily riding it when we left and wished his team luck.

As Dave and I walked down the hall, I might have commented that they're in over their heads ... not that I don't think they're capable, but I cannot fathom stepping into a classroom with 4-5 children who have the type of needs that Teddy has. And those adults are outnumbered. There's a reason I wished them luck.

And how did Teddy's day go, you ask? Your guess is as good as mine. He can't tell us anything about how his day went, and I'm going to assume that today was so chaotic that there was no time to jot down a note.

Here's to hoping he had a great first day and that we'll settle into a routine with regular communication with his team, lots of integration into his first grade classroom and therapists who partner with us to support him.

Update: A note came home on day 2 that Teddy had a good first day of school and that he enjoyed gym class with lots of smiles. That kid loves gym class because he gets to be a bit more daring than the rest of the day. He's actually allowed to climb things then. 

A Hiking We Will Go

Hiking is one of my favorite things. Before children, Dave and I hiked and backpacked across the entirety of Isle Royale as well as the length of Pictured Rocks. Carrying those heavy backpacks was merely training for carrying children when we continued hiking after having children. AJ is more than capable of hiking on his own and alternates between doing remarkably well and complaining remarkably well. Teddy, on the other hand, has always been carried despite the fact that he is now 6 years old and weighs more than 50 pounds.

I recognize that my years of carrying Teddy for any distance are greatly limited, but I will continue to carry him as long as I'm able to in order to give our family the ability to truly experience the great outdoors. There's so much to be seen that can't be reached in even the sturdiest of wheelchairs.

Teddy is capable of walking, running even and climbing darn near anything. (Seriously, the other day I walked in the garage to see him perched on the back bumper of the Chevy Equinox holding onto the rear windshield wiper and attempted to use that to brace his knee to climb up the back side of the vehicle.) However, he falls constantly. So much, in fact, that we don't even pay attention to him falling most of the time because it's such an ordinary part of every day. He also lacks any sense of safety awareness and seems to gravitate to ditches and ravines because they're more fun.

So he's had very few opportunities to attempt hiking on an actual trail, but he's continuing to improve his balance and want more independence. On Friday I wanted to take the boys hiking at High Cliff State Park for one last summer memory that would be an excuse to eat ice cream for lunch. I decided to give Teddy a hiking stick and see what happened. He was extremely excited and took off in the opposite direction, so I turned him around and steered him past all the vehicles because I didn't want him to scratch one with that weapon of his. Yeah, a hiking stick isn't for balance. It's for swinging wildly, jabbing and poking. It's way more fun that way.

Teddy set off with an excited pace!

We made it onto the trail with Teddy leading the way part of the time. He is easily distracted by other people, so I had to redirect his attention to follow AJ. He thought the big rocks were really fun to poke, touch and inspect. He also liked tapping different trees with his stick and whacking all the foliage along the trail with it. The trail turned uphill and got much steeper, narrower and rockier. The steepness and narrowness were fine for Teddy, but the rocks got to be too much that he kept falling every few feet.

4 cars in the entire parking lot, and he nearly ran into them.

 So, I loaded him up, and we continued on our hike in our usual fashion with me as Sherpa for Teddy. But I was impressed that he made it 4/10ths of a mile on his own two feet, especially with a portion of that being rougher trail. I think that if we stayed on the more level trail that he'd have been able and interested in going further. It's something we'll have to continue to practice and try because he's interested in it, and I'm interested in not carrying a squirming 6-year-old for the entire hike always. (It's much easier to carry the same weight as Teddy that isn't trying to escape and flail and steal my hiking stick and stab me with the stolen hiking stick.)

I was surprised by some of the comments when others heard of our adventure about being a great mom and giving Teddy this opportunity, but it's really self serving. Hiking is one of my absolute favorite things to do, and I want to share that love with both my children. I want to continue to do it as Teddy grows older, even if our pace is slower and we have to poke every rock and tree. Nature soothes the soul ... and we all need that.

Just Imagine

Imagine, if you can, going through an entire day without being able to say a word. You can communicate anything you want, as long as you do it through staring at objects, physically directing others to do what is desired, clapping to show that you want something and pointing at objects.

How would you fare?

That's the thought that popped into my mind this weekend, and it's been lingering. I'd probably end up in tears within the first hour of the day. I'd likely give up attempting any communication, at least with certain people, once I'd exhausted their patience with me and my patience with them.

I can't imagine honestly making it a single day, even if I took out the challenge of a work day. Yet this is each and every day for Teddy. He handles what would drive me over the edge with remarkable grace, patience and forgiveness. Yes, those aren't often words I use with Teddy, but when I think of the challenges in expressing basic needs, much less wants, dreams and desires, he exhibits all those qualities.

At times, I lament how challenging it is for us as parents. Life is a constant game of charades, and we don't even know the category most of the time. But no matter the frustration we feel, Teddy by far has the shorter end of the stick.

The other week he was eating a grilled cheese sandwich and got up from the table and stood at the counter next to the fridge. I was about to redirect him to go sit down and finish his food when it suddenly clicked that he probably wanted another grilled cheese sandwich. So we showed him AJ's sandwich and asked if he wanted more. He clapped and pointed at the sandwich, which is a clear request. So we made him another grilled cheese and celebrated the victory of understanding his desire for seconds. I felt so proud of that minor victory, yet how many other moments have I completely missed?

It's amazing how much he can communicate with his limited means, and we'll continue to work with his talker and with sign language to expand his abilities. It takes time for others to get to know his methods, yet sometimes there's no doubt what Teddy wants you to do. Other things, like a second grilled cheese, require us to pay much closer attention to all the little clues. It's exhausting for all of us, yet exhilarating when we make progress in either communication or understanding.

In the Middle of the Night

I remember hearing stories from other parents who panicked when their relatively newborns slept through the night unexpectedly, waking up and rushing to check that they were OK and nothing bad happened. That never happened to us, either because our children never slept that darn well at an age where we would have panicked, we were too exhausted to notice or we were just more relaxed in our parenting style (or some combination of the three).

As time has passed with Teddy, though, we've worked through many times that he's awake in the middle of the night or wee hours of the morning. Sometimes he's crying, sometimes he's just whimpering and sometimes he's kicking the walls. (Yeah, that is annoying to say the least.) Teddy cannot leave his room on his own for his own safety. (Left to his own devices, he could elope from the house if he unlocked the garage, got in a vehicle and used the garage door opener to open the doors. He's done exactly that, just not in the middle of the night).

Since he's non-verbal, there's also no way for him to call to us to let us know if he had a bad dream, if he's thirsty or, most importantly, if he's not feeling well. So we're left to guess, when we're half asleep, whether it's something that requires us to check on him.

You might think the natural thing to do as a good parent is always to check to make sure he's OK. But, with Teddy, it's not uncommon for him to be awake at night. Us intervening when nothing is wrong can turn into Teddy deciding it's morning and that we should go downstairs to play. That's not what we want at 4 a.m.

So, unless he's hysterical, it's a guessing game where intuition is the only advantage we have. Sometimes he's only whimpering, but I'll have a nagging feeling and check to make sure he doesn't have a fever. That's how we've discovered a few illnesses that completely shift our plans for the day because a fever immediately puts Teddy at risk for a seizure.

Sometimes, though, that nagging feeling is worry rather than intuition. That still results in one of us laying by him until he falls back asleep because checking on him and just heading back to bed results in hysterics as soon as we shut his door.

This morning, it was worry. That's why I'm writing this at 4:30 a.m. Dave volunteered to lay with him, so I can still meet my friends to run at 4:45 a.m. (Yes, we know we're crazy.) Such is life with Ted.

This camera can't tell us whether Teddy's sick. That takes the human touch.

Absence Makes the Heart Grow Fonder

In typical families, there might be such a thing as hiring a babysitter to watch your children to give the parents some time together. In families with significant disabilities, that thing is called respite. We have within Teddy's service plan 10 hours of respite to essentially give us a break from Teddy. Sometimes we use respite to get chores done, like mowing the lawn without carrying Teddy on our back or spring cleanup without constantly chasing Teddy. Sometimes we use it to do something fun with AJ, like a movie, to give him much needed attention since so much of our time is focused on Teddy's needs. Perhaps my favorite use of respite was to have our sitter come to our house during a  party with all our friends and their children where we had a bouncy house, so she could chase Teddy and we could enjoy conversations and margaritas. He got to be part of the party, and so did we. 

This summer, however, we've used nearly none of our respite because we have one person who does our childcare and respite. She can't go over 40 hours a week, which means that there's really no room in her schedule to do respite. (And she's moving to New Zealand in two weeks, so we're really screwed then ... know any responsible adults in the Oshkosh area?)

Last weekend my folks stepped in with their Christmas present for Teddy (and us, honestly). They agreed to take Teddy for a weekend, so we finagled that into a long weekend. We headed out with AJ late Thursday evening toward Pictured Rocks in Munising, Michigan. Friday morning we hiked 3 miles into Chapel Beach and set up camp for the next two nights. Backcountry camping is something Dave and I fell in love with before children, but it's really hard with children because you carry everything you need for the entire trip in your backpacks ... plus your small children. We managed one trip with AJ before he turned one, and then last year we headed back with AJ carrying his own small backpack and doing his own hiking. We all enjoyed it so much, that we repeated it again this year. 

This year AJ even managed an extra hike to Grand Portal, which has amazing views. 

Chapel Beach is one of our absolute favorite places. It's become much more popular, so it's too crowded during the day for our liking with people hiking in for the day (which we've done once with both Teddy and AJ) and those in pontoon boats (which would be another way to get Teddy there for a day). But when you camp at one of the six sites there, it's so peaceful later in the evening and in the mornings. We were lucky enough to have the entire beautiful beach to ourselves both mornings and one evening. There's nothing quite like that.

Meanwhile, Teddy had a fantastic time with my parents. They went to Bay Beach and rode oodles of rides ... and learned that $10 of tickets was way too many. They went to the little zoo in Oshkosh and parks here. They went to the Children's Museum, which Teddy loved. Teddy got 1:1 time with his grandparents and loved all the attention. 

This was one of Teddy's favorite rides. He's such a goof. 

This past weekend was so perfect in so many ways. Both children got that special attention to know how loved and cherished they are. AJ got to spend time outdoors exploring, splashing in the water, foraging for wild blueberries and building his hiking stamina. Teddy got his grandparents to do his bidding and be his puppets. We got to spend time outdoors disconnecting from our daily routines. 

Seriously, though, any leads for respite?

Not so Helpful Helper

Dave and AJ headed down to the land Saturday to take care of a few things. Since they had a pretty full schedule of work, Teddy and I stayed home to get a few things done and avoid chasing Teddy around the cow poop from our grazing visitors. Getting a few things done with Teddy can be quite the interesting experience, though, because sometimes he plays really well independently, sometimes he wants you right by him and sometimes he destroys stuff faster than you can possibly keep up.

Our Saturday morning started with Teddy breaking the bathroom faucet while reefing on the handles and sitting on the counter washing his feet. He's extremely interested in playing in water, and usually it's not that horrible of a mess to just soak up the water. This adventure required turning off the hot water to avoid the constant dripping until Dave came home. Luckily, that was a quick fix that just required tightening a few things.

Teddy and I went to the farmers' market to get some beans and cucumbers to can. We also sampled donuts and crab rangoon, both of which made excellent breakfasts. I knew that attempting to can with Teddy had the potential to be challenging, but I managed to get everything canned while he was awake.

He actually spent much of his time playing in the garage. The garage is not the safest spot for him, to be completely honest, but it works with frequent checks, a sharp ear listening for reasons to sprint there and tolerance for things to be destroyed. On one of those checks, I discovered Teddy was an auto mechanic with a mop. He was nearly all the way under the car, just like an auto mechanic, although I've never seen an auto mechanic under a car with a mop as their tool. Fortunately his feet were sticking out, so I could extract him and point him in a different direction with his mop.

Sunday morning, I decided we should clean our windows that were completely schmutzed with fingerprints, food and probably quite a few licks. This gave Teddy the chance to play with the spray bottle. I managed to snap a few pictures of him, and he looks so proud of his work and helpful. Reality was that I was constantly following right behind him, redirecting him to spray only the windows and not everywhere else (including his mouth) and eventually sent him outside to spray to his heart's content. That ended with the spray bottle in two pieces and part of it dropped over the deck.

Still, it was a productive weekend as far as life with Teddy goes. And he looks super helpful, so I can always use these pictures when I'm trying to outsource him, right?

This is great fine motor practice. 

Doesn't he look happy and helpful?