Birthday Adventures

So, this is more than a week late, but Teddy is 6!

Birthdays are a gamble with Teddy. Will they be joyful occasions, celebrating all that he's accomplished and the fact that we've been blessed with another year of life with Teddy? That's what each birthday should be because the medical research we got with his diagnosis had a prognosis of not more than 3 years for life expectancy.

The reality, though, is that sometimes birthdays are hard. Sometimes, they're a reminder that he's another year older, which means the gap between him and his peers only increases. He's now 6, and I've still never heard the words "I love you." (Trust me, he communicates that loud and clear in other ways.)

Then, there's other years, where he's struggling to sleep, so we're all frustrated and stressed, which makes the thought of a birthday party less than appealing. That was this year. But, we still had a fantastic day, and both David and Teddy got naps, which helped greatly.

For Teddy's birthday this year, we spent his actual birthday on our land riding around, checking out the scenery and making the most of the weather between storms. For 6 hours of driving in a day, we had a great time with nearly 5 hours there playing and exploring. For Teddy, riding around in vehicles is the best thing ever, so it was a pretty cool birthday.

The birthday boy doing one of his favorite things. 

We did his party a week later, and we had a bit fewer folks than normal due to trips, work schedules and life being busy. The great thing is that Teddy is excited enough for presents, but what he really loves is all the people. He was eating up all the company and the opportunity to play with his cousins. When it came time to open presents, he wanted to direct everyone else to help open his presents to make sure they were included in the fun. That's one of the things I love about him--not that he's a little dictator--but that he loves to share his joyful experiences with others.

Teddy tries our patience daily, particularly now that he's mastered escaping out the front door through two sets of locks in less than 10 seconds. But, he has such joy for life, such determination and the ability to live in the moment. There's plenty of times that I need to channel my inner Teddy because there's so much awesomeness in that little boy who's not quite so little anymore.

Taking Flight with MTT

Sheesh, it's been a while since I posted here, but we've been busy this summer. I need to catch up on Teddy's birthday adventures and medical mishap, but I first want to share our most recent adventures this weekend.

Oshkosh holds a week-long air show every year that attracts more than 500,000 visitors. The past two years, Teddy and I did the 5k run on the runway. This year I convinced a couple of my friends from Moms Run This Town (MRTT) to join me in racing with Teddy with MyTEAM Triumph (MTT). Making friends is not an easy thing for me, but I now have quite a few running friends from MRTT who are amazing ladies who not only run the miles and share the stories with me but are friends beyond the running ... at least as much as we have time outside of our busy lives.

This was the second race this year where I convinced MRTT friends to run with Teddy and I, and there's something special about combining my friends with Teddy. Heck, there's something special about running with MTT. I loved seeing my friends post that this race wasn't about the time but was about spending time with Captain Teddy.

Minda and Maureen with Captain Teddy. 

For his part, Teddy likes the EAA run because there's lots of cool things to see with planes literally lining both sides of the course. As exciting as that is, there's so many golf carts! Teddy ran across the finish line with my friend Minda and I while my friend Maureen captured video, and it was such a special moment to share with friends. But then I had to convince Teddy to walk back to his race chair, which was quite the feat with all those tempting golf carts. He'd throw himself to the ground when I wouldn't let him get on golf carts, and I'd try to explain that we couldn't ride those golf carts.

That was so rough that Maureen went to get Teddy's chair for him, and I told Teddy yet again that we couldn't ride that golf cart. And the man driving it said, "Why not? He can ride." That man was Teddy's best friend (and mine, honestly) for the time it took to drive us the 20 feet to his race chair. I love that he was willing to do something so small that was something so huge for Teddy and me.

When it was time to get off, Teddy practically sat in the nice guy's lap to avoid me. 

I thought that would have been the highlight of Teddy's race adventures, but that was topped by one of the other MTT parents offering Teddy a ride in his brother's Jeep. I thought we were only going about a block to the parking area, but instead we got to ride all the way to town with Teddy absolutely thrilled about the wind blowing in his hair in this cool Jeep with no doors. It was hard to tell if Teddy or Don, the parent, was enjoying the ride more. That ride was the highlight of Teddy's adventures at EAA, and Don said the exact same thing when I talked to him at the training run tonight.

Teddy thought he was pretty darn cool. Let's be honest. He was.

There's something incredible about other people just embracing your children. It's something we take for granted with our typical children, that they're welcome to sleepovers, to play at friend's houses and to go on excursions because it's a normal part of life for them. With a child like Teddy, it takes extra effort to do excursions, to play at friend's houses and, well, he doesn't sleep that well in the first place. MTT is such an incredible organization because it gives us so many opportunities ... from someone at MTT telling us to go get the VIP tour of the firetruck (which oddly freaked Teddy out) to Don giving Teddy the Jeep ride to Don taking Teddy tonight at the training run and playing at the park with him halfway through the run. MTT isn't about running. It's that, but it's so much more. It's the inclusion into real life. It's the relationships that have meaning for angels, captains and their families.

Heck, the only downside to Don taking Teddy tonight was that I volunteered to push an angel other than Teddy. And I realized quickly what I already knew. Teddy's a lightweight compared to an older captain. Or I'm a wimp.

#runlikeangels #mttambassador

Without a Word

Teddy is non-verbal, meaning he doesn't talk yet. He might, someday, be able to communicate with some spoken words. For now his primary means of communication is gestures and clapping. Clapping is Teddy's way of saying "I want." When that's combined with pointing, it's amazing how that's a complete sentence that paints a pretty clear picture of what Teddy wants.

Of course, knowing Teddy helps in understanding what he wants. If you're not complying with his suggestions or requests, then he'll take your hand or physically direct your body where he wants you to go.

Last week we did a different run with my TEAM Triumph and a local running group combined to introduce others in the running group to the amazing organization that is MTT. There was a park nearby, and Teddy managed to convince one of the angels who's in high school to go play at the park with him before the run.

This photo was from spring, not when it's nearly 90 degrees. Andy is on the far right. 

After the run, Teddy wanted to make a beeline to the park to play again. I told him that he could, but he kept looking at me and clapping. I told him he could go by himself because I could see him and sprint if needed. But he came back toward me, so I put my hand out to go with him. He went right past me to another angel named Andy, clapping and pointing to the playground.

Andy was an incredible sport, going to the playground to play with Teddy. That meant going down different slides and climbing different things. Andy drew the line, though, when Teddy wanted him to go down the tunnel slide because Andy was afraid he'd get stuck and have to explain that to the fire department.

So they continued playing, and Teddy kept asking Andy to go down the tunnel slide. Eventually Teddy convinced Andy, not once, but twice, to go down the tunnel slide.

It's amazing what Teddy can communicate without saying a word. He was able to convince someone to change their mind without a single word. That's pretty incredible.

And, honestly, so is Andy for being such a great sport!

#runlikeangels #mttambassador

Perfect Summer Days

Our 4th of July adventures included a trip up north that was shortened due to Teddy sleeping poorly the first night, lots of bugs that prevented being outside, humidity and the cousins going away on a day trip to see waterfalls. We all left the cabin a bit disappointed, but sometimes plans need to be adjusted rather than sticking them out and being crabby and tired.

Coming home a day early allowed us to visit the farmers' market and enjoy some tasty donuts, along with seeing Santa in July. I dare say that this might be the best picture with Santa we've gotten ... at least in the last few years. Teddy was intrigued rather than terrified, so that was fun.

Such a great Santa photo, at least for my boys!

Then my aunts came to visit, along with my Grandpa and one of my cousin's daughters. We had fun playing at our house before heading to a park for even more fun. It's amazing to see what Teddy can convince his great aunts to do, without even saying a word. Trust me, Teddy's rather persistent and convincing. Come to think of it, he'd be excellent and charades, as long as you can push, pull and physically direct people.

Teddy did remarkably well climbing this, chasing the older kids.

My uncle and his significant other came over later in the afternoon, so we had a fantastic supper on the deck with the kids running around the yard playing. We couldn't have asked for better weather because the humidity moved on, and there were so few bugs. It was truly a perfect summer afternoon and evening.

All the children lasted until dark to light sparklers with the torch that AJ designed and helped build, followed by three fireworks. (Dave's mom generously sent along fireworks and sparklers for AJ since he missed out on them by us leaving a day earlier than planned. She also sent enough food to feed my entire family supper. We're pretty darn lucky for a lot of reasons.)


For backyard fireworks, they were quite the show. Teddy loved the popcorn one and kept clapping his hands for it. Oh, and the kids all got to enjoy s'mores around the fire pit as well.

Teddy and sparklers = way more dangerous than any other child.

Today was even more fun at Bay Beach in Green Bay. It's a small amusement park with rides ranging from 25 cents to $1 for the Zippin' Pippin', which was one of Elvis Presley's favorite roller coasters. The little kids had the best time, and the adults tested how strong their stomachs were with the Tilt-o-Whirl, the Ferris wheel and the roller coaster. We followed up lunch with a walk through the wildlife sanctuary where the kids got to feed the ducks and geese along with a wounded deer. We also got to see a cougar, otter and foxes. We didn't get to pet or feed those, which is really a good thing. (I think Teddy wanted to ride the deer.)

It ended up being an absolutely wonderful summer weekend with great weather, family and many memories made.

"You're So Lucky"

That's what I heard last week from an older gentleman at the grocery store. Teddy and I were pushing the cart while AJ carried the shopping list. At that moment, we probably looked relatively normal, but perhaps he looked past that facade to see our reality.

Reality is that shopping with Teddy is hard because he doesn't follow directions well and has little to no impulse control. That means that anything in the store is fair game to be grabbed, chewed on or eaten, particularly in a grocery store. And that means that he needs extremely close supervision, such as between my arms with both of us pushing the cart, or in backpack carrier. He's too large for most shopping carts, unless you put him in the entire cart, which then prevents you from putting most things in the cart (see that part about grabbed, chewed or eaten above). The best option for shopping with Teddy is to put him in his chair, but someone needs to push his chair while another person pushes the cart.

Since I didn't have Teddy's chair or the backpack carrier along, my options were pretty limited on that grocery trip. This was actually the second time I can recall that Imanaged an actual grocery run with more than one item with Teddy walking on his own and pushing the cart.

Reality is that AJ ended up in tears once because Teddy rammed him with the cart. Trust me, it's hard to hold the cart still, keep a hand on Teddy to keep him holding on the cart and reach for something way over there that you need. I considered it a success that we only had one bout of tears, nothing got destroyed or messed up and that we got all our groceries.

It's far to easy to think about what's tough in life. That gentleman was absolutely correct. I am so lucky to have two boys of my own, when doctors thought we'd never have children naturally. I'm so lucky to have boys who adore each other and their parents, who come back for extra hugs, snuggles and giggles. I'm so lucky to have such an incredibly compassionate, fairy tolerant, older son who helps with so much without thinking twice and loves his brother something fierce. I'm so lucky to have Teddy who makes me wise beyond my years (oh wait, that's the premature aging from the stress of being his mom). Seriously, though, I'm so lucky to have Teddy who approaches life with such joy and determination and a desire to share that joy with others.

I'm so lucky to be able to spend ordinary moments grocery shopping with my children because of all that implies. I have enough money for groceries. I'm able to spend time with my children. I have the stability of eating meals at home with my family. I can walk through a grocery store on my own accord. I have a vehicle to drive shopping. And the list goes on.

We are abundantly blessed. Sometimes, it takes a stranger to remind us.