Tuesday, January 15, 2019

Tractor Repairs Needed

Know a good tractor repair place? I have an 1850 Oliver that needs quite a few repairs. It's in 4 pieces, not counting the steering wheel and random screw I found.

You see, Teddy had an 1850 Oliver tractor on a shelf that's about 6 feet off the ground in his room where it should be perfectly safe from Teddy's curious hands. Should be.

Except Teddy likes to climb. He tries to climb the boxes in his closet to see what he can reach, so we spread them all in a single layer. He doesn't have the dexterity to stack the boxes on his own ... yet. But he has figured out that if he pulls out the drawers of his dresser, he can magically become taller. Sometimes he's tall enough to pull his lamp near the edge, remove the light bulb and place it in his top drawer along with 5 pacifiers. Dave and I each caught him on top of his dresser on two separate occasions, laying flat on top, quite proud of his accomplishment.

Let's just say that this week he scaled all 4 feet of his dresser for (at least that I know) the third time. Except this time, he moved beyond laying on it to the tall kneeling or most likely standing position. Then he reached out and got two items from his shelf, which is about a foot or so away from the dresser. I'm guessing he might have grabbed the compass first and that the tractor might have fallen when he attempted to grab that since it was (at least before becoming 4 separate pieces) rather heavy. It's intended to be a model tractor for display as opposed to a toy tractor, although Teddy was indeed playing with it when I entered his room.

I reckon this is why these are model tractors, not intended for play or falling 4+ feet.
So, now his bedroom dresser has child safety locks on the three bottom drawers. I'm guessing that Teddy can't use the 4th drawer to scale to the top, but you never know. If so, we'll add that safety lock. Until then, he has the freedom to empty and re-arrange his t-shirts, along with his swim wear and sock drawers that are the top row. I can't take away all his fun at once.

Saturday, January 12, 2019

Your Son is a Blessing

As I searched previous posts, I was surprised I hadn't done a post on his bus driver because, quite simply, she's the absolute best. Case in point, on Thursday I loaded Teddy and AJ into/onto their respective vans and buses for school and walked into the garage to get into my car for work. That's when I discovered I was still wearing Teddy's minion backpack. Whoops. I called his driver, who headed back to our house to grab it, saving me the time and hassle of getting it to school.

That's just one example of her awesomeness, although I could do an entire post. The point of this post, though, is to share what she told me this week Tuesday. As I loaded Teddy into her van, she said, "Your son is such a blessing." She then proceeded to tell me about the impact she's seen on another little boy, whom I'll call Jordan for the purposes of sharing the story.

Jordan is a 4th grader who started riding Lori's van a few weeks ago. Jordan's ride home is nearly an hour long, and it includes picking up Teddy from his school and bringing him home. Jordan is having a number of challenges at school to the point where it seems he doesn't have many options left if his actions continue. If I had to guess, he's probably the reason that Lori now has a camera in her van as a safeguard for her in case a child makes false accusations. When Jordan first started riding, Lori commented that Teddy enjoyed having another child for his ride home.

Now Jordan moves from the front seat of the van to the middle, right across from Teddy, when they pick up Teddy. He plays with Teddy during the drive, doing what he can to make Teddy laugh and giggle. Earlier this week he made a paper mask for Teddy as a gift. (It was a pretty creepy mask, but it seemed like Teddy liked it until he tried to eat it.)

Lori said it's incredible what an impact one person can have on another. She said this troubled little boy is a completely different person when he's riding with Teddy.

I believe it. Aside from those who live with Teddy where our patience sometimes wears a bit thin, I've seen Teddy bring out the best in different people in his life. He's engaged people who really didn't like interacting with young children. He's softened people who are pretty gruff around the edges. There's something about his smile, enthusiasm and joy that just works magic.

For Jordan, my guess is that it's quite simply Teddy's acceptance and happiness to see Jordan each day. He doesn't have expectations of Jordan's behavior nor does he ever say anything mean, hurtful or judgmental to Jordan. He's just excited to see him each day.

Imagine if we could replicate that, even a portion of the time. We carry so many judgments and preconceived notions about people and try to categorize them, yet Teddy's standards for a friend are pretty simple: If you smile at me, and you're not wearing some strange costume like a Santa Claus or Easter Bunny outfit, then you're my friend. He's proven this time and time again by grabbing strangers' hands when they smile at him. Now, I don't quite advocate that because you'd probably get a lot of weird looks at a minimum, but at least a smile in return goes a long way to make the world a better place.

Wednesday, January 2, 2019


A few weeks ago, I took both boys to church by myself. It was a feat that required AJ's maturity to sit in a pew by himself for large portions of Mass while I was busy making friends throughout the entire church with Teddy. It happened to be Gaudete Sunday, which celebrates joy. I heard enough of the homily that it resonated soundly with me.

The first takeaway for me was that the version of Gaudete means to rejoice in the command form. It's not an option only when we feel like it but a command to find the joy always. Not just when things are easy. Not just when your child sits nicely through church. Not when everything is great. Instead, always find what is great in everything and rejoice in that.

The second, though, that really hit home was the quote from Pierre Teilard de Chardin:

"Joy is the infallible sign of the presence of God."

One of the things that we've found in common with other parents of CDG-PIGN kiddos is the extreme happiness of our children. They are the most exuberantly happy children (unless they aren't, of course). In fact, one of the girl's nickname is Joyful Julia.

If you know Teddy, you know what I'm talking about. That ear-to-ear grin with dimples all the way simply because he embraces the happiness of the moment, whether that's seeing someone he loves, sharing the fun of something incredible (like his toy vacuum) with another person or doing something incredible like playing with AJ, rolling around with me, being tickled by Dave or something else that others might find ordinary. Teddy lives life fully with joy.

So I nearly teared up in church as I snuggled Teddy (to hold him still for just a moment) and said, "That's you, buddy. You're proof of God's presence every day."

And then I missed the rest of the homily because we had an usher we had to go visit. But at least I heard enough.

Sunday, December 30, 2018

Trust Me, We're Not All That Special

Our family gets judged. At times, it's by others in public who give me the side eye as I fireman carry Teddy away from where he wants to be or have him flop down on the ground refusing to move. Other times, though, it's by friends or family who seem to think we're super parents when, in reality, we're not.

We're just like other parents. We are excited for our children's accomplishments, whether that's AJ learning multiplication in first grade or Teddy mastering the art of stacking canned goods. (Stacking has been a really hard skill for him.) We love to hear our children laugh and giggle and take joy in their joy, whether that's AJ's hysterical laughter during Home Alone movies or Teddy's excitement to have vacuum cleaners. We get frustrated when they don't listen, like my voice somehow being in an octave that AJ magically cannot hear or Teddy completing disregarding our requests at least 75 percent of the time.

When people say how remarkable we are as parents, I appreciate the kind words but know the reality is that we get frustrated more often than we should. There are moments where my patience is completely exhausted by Teddy's determination to do exactly what he shouldn't ... lots of them, honestly. But then there are the mornings where I go into his room, roll around with him and snuggle him with kisses and laughter.

I appreciate the thought, although I don't think it's true.
Basically, we're human, which means we're nowhere near perfect. But all those prayers from our family and friends go a long way in giving us the grace to keep trying and extend my patience.

Thursday, December 27, 2018

Merry Christmas ... A Few Days Late and Vacuums Later

A belated Merry Christmas from our family! We spent the past week with good neighbors and family and are enjoying a quiet night before celebrating Christmas and birthdays with the other side of the family.

Highlights of our celebrations included a last-minute Christmas gathering with our neighbors from our cul de sac. Everyone happened to be available Friday night, so we had our 6 families gather at our house for an evening of margaritas, food galore, laughter and fun. We created a saran wrap ball for the kids, which was followed by a plethora of presents from neighbors. I was amazed that the boys received gifts from three different neighbors. One neighbor gave all 6 kids lights for the wheels of their bikes, which was pretty cool. Teddy kept taking one neighbor down to the basement to ride the exercise bike with him, and she was a great sport about it. It's really fun and relatively easy with Teddy to have our neighbors to our house, so there's already talk of a Father Time gathering for January or some other contrived excuse to gather and drink margaritas.

Saturday my family began arriving, which made the boys quite happy, particularly when their aunt and uncle showed up Sunday with the two fun-loving dogs. Teddy adores Zed and Rook, perhaps a bit too much since he lets Rook lick his face non-stop. (She's a puppy who's still working on boundaries ... lots of similarities to Teddy). He loves to chase them, wrestle with them and play with their toys.

Complete disregard for personal space & perfect for each other.
It's nice when there's a house full of people because there's more eyes to keep on Teddy and more people to play with AJ when he needs a break from Teddy. We added two more dogs and three more people Christmas Day with my uncle, his girlfriend and my grandpa. My grandpa usually winters in Texas, but he's been stuck here in Wisconsin much longer than he'd like while waiting for heart surgery. (Apparently that happens when you're 96.) That meant I got to spend Christmas with him for the first time since I was in elementary school, and my boys got to spend Christmas with him for the first time ever. That was the absolute best present I could have gotten this year, and I soaked up every moment.

96 years old wearing my super stylish Goodrs.
The boys got a plethora of cool presents. As soon as Teddy realized the presents under the tree were fair game, he was under the tree unwrapping as he laid there, regardless of whose gifts were in his hands. He was less interested in his pile of presents and preferred to go around the room opening whatever gift caught his interest, so he helped just about everyone. Among his gifts were two vacuums. One is a real one my aunt snagged at Goodwill, and the other is a toy Dyson from his running buddy. His face lit up when he realized he was getting vacuums for Christmas.

A boy and his beloved vacuum.
It's always a bit stressful to have extra people and dogs who don't always get along perfectly, but it's absolutely worth it for the memories we create. From card games to saran wrap balls to incredible Christmas light displays to a Christmas day run, walk and bike ride event, we made many memories ... and learned a few things to make next year's saran wrap balls even more fun.

Tuesday, December 18, 2018

The Sweetest Brother

We've often said that AJ is a better person because he has Teddy as his brother. He's growing up with not only his brother's disability but also the circles of friends we've made with a wide range of disabilities. He floored me the first time he asked if I thought another child had special needs because of his stimming because I didn't even know he knew the phrase. It's been interesting, and heartwarming, to see how he processes Teddy's differences.

Last week, he nearly made me cry right before we walked into a store. AJ asked whether he and Teddy would live together when they were grown up. I said that typically brothers don't still live together when they're adults, just like his dad and uncles all live in different houses. His response was that he wanted to live with Teddy because he is his brother and he loves him and would miss him and he has special needs. Then, ever pragmatic, he said he would need breaks though. I asked how he'd get those breaks if Teddy lived with him. He said he would have a job outside the house and go shopping. (Can you tell how we as parents get breaks from Teddy?)

The reality is that if he chooses to live with Teddy in the future, I want that to be completely a freely made choice not an obligation. I want AJ to be able to live his own life and not be burdened with the responsibility of being his brother's caregiver. Trust me, that's something that I struggled with a lot when Teddy was first diagnoses. I even told Dave that the best-case scenario with Teddy's grim prognosis (a life expectancy of 3 years in the initial research paper we were given) was that AJ would have to take care of Dave, me and Teddy as an adult.

Then last night AJ shared his Christmas list to Santa. I think he had about 20 things on there, including typical things any 7-year-old boy might want:

  • LEGOs
  • Magic set
  • Juggling kit (beginner)
  • Tablet
  • Phone
  • $100 bill
Then there were things that aren't quite so typical:
  • Play dough (for Teddy)
  • Teddy to say his 1st word
A portion of AJ's Christmas wish list.

Dave was too busy chuckling about the $100 bill that he didn't hear the wish for Teddy to say his first word until I had AJ read it again. Talk about melting my heart. As parents, we're not the only ones who would love for Teddy to talk. AJ told me a few weeks ago that he wished Teddy could talk because he has lots of questions for Teddy. One of his questions is whether Teddy likes having AJ as his brother. I told him that I could answer that without a doubt that Teddy adores AJ as his big brother.

I'm sure there will be times, especially when AJ hits his teenage years, that AJ will drive me absolutely nuts. But, for now, he's the most incredibly sweet boy I could imagine. 

Sunday, December 16, 2018

MyTEAM Triumph Holiday Gathering

During summer Teddy and I spend most Monday nights running with myTEAM Triumph. We've been regulars the past 2 years at the training runs, so we've gotten to know many of the other regular captains, their families, angels and volunteers. The only problem is that we don't run through the winter months, which means we hardly see our MTT friends. 

It's taken a while to realize this, but Dave and I discovered at Halloween how easy it is to invite people over to our house during the winter months. Teddy has our entire house, which is Teddy proof, to play without any fear of him taking off (which happens often when we're outside) or breaking things (which happens at other peoples' houses) or getting into a lot of things he shouldn't (which happens pretty much every where). Our house is relatively easy to supervise Teddy whereas just about everywhere else requires constant 1:1 with a whole lot of redirection and physical wrangling.

So, we invited all the Fox Valley MTT group to our house for a holiday gathering. Despite the short notice, we had a total of 4 Captains and their families and 3 of the crew join us. We spent a couple hours snacking, talking, enjoying each others' company, sharing all our cool toys, snoozing in our comfy circle chair and playing cards. It was an absolutely perfect afternoon.

MTT friends who become like family.
AJ was the best host, getting drinks for people, handing out candy canes and sharing all the cookies and treats. We ended up with quite the spread of snacks, thanks to everyone's generosity. Dave set up the tripod to capture the entire group picture. We got to spend a couple hours with people who we see often but don't always get to have the in-depth conversations with since I'm usually chasing after Teddy unless he's strapped into the race chair. 

The host with the most.
One of the best parts of MTT is how accepting and understanding everyone is. Things that set us apart in the community, like taste testing every non-food item, are perfectly acceptable among this group. Toys that might be considered not age appropriate are really quite fun for a wide range of people, and that's perfectly OK. Teddy can invade people's personal space with no issues ... aside from us keeping the baby from being squished by a loving Teddy. (Even Teddy's gentle version is a bit rough for newborns.) Everyone keeps an eye out for each other's needs and steps in to help where needed, whether a helping hand, a supervisory eye or simply not being convinced to undo the child safety locks. (Nice try, Teddy.) 

Teddy loves babies almost as much as Ann. 
Simply put, acceptance is such a wonderful thing. Not being so terribly different is nice sometimes. In fact, I think 3 of the 4 Captains all have had mattresses lying directly on the floor in their bedrooms because it worked for them, Teddy included. Another Captain had his bedroom closet doors removed, which is exactly what we've done in Teddy's room because it's apparently quite fun to kick the doors when you don't want to sleep. 

We had a house full of people all day, with play dates for each boy this morning and this gathering this afternoon. House full and hearts fuller.