The Best Brother

I know I've said it many times, but we're so blessed to have AJ as Teddy's older brother. Now, some of AJ's awesomeness comes from 6 years of living with Teddy, so certain aspects of helping and interacting with Teddy are second nature. But AJ still has a huge heart, tremendous passion and a desire to plan things to perfection.

Tonight AJ spontaneously started helping Teddy write the letters of his name, doing hand-over-hand with Teddy. This started while I was making supper and they were in the other room. AJ told me what he was doing (although I could figure it out from AJ's prompts to Teddy), so I captured a video without AJ realizing it. (I almost got busted when Teddy noticed, but AJ was able to redirect Teddy's attention ... sort of.)

This was only the start.

As soon as Dave walked in the door after work, AJ was at his side to show him what they had been doing, proud of both his and Teddy's efforts. Then AJ concocted a plan for working with Teddy on a regular basis to help him learn his letters, spending a few weeks to master Teddy and then moving on to Theodore. (We suggested perhaps we focus on Teddy and not worry about Theodore yet.)

He asked to use the computer to create worksheets for Teddy to trace letters. Now he has three week's worth of worksheets that he plans to do with Teddy, a bit at a time, to help him learn.

Perhaps the best part was that Teddy was so receptive to AJ helping him that he actually stayed and focused and didn't wiggle his hand away. We'll see how long it lasts, but I love AJ's spirit and kind heart.

The Best Big Brother Ever

God knew that Teddy couldn't have just any sibling.

He knew that Teddy needed a brother, someone to wrestle with him, fart on his belly and model the way to do things. He knew Teddy's brother needed to have (or develop) incredible patience to handle the challenges encountered daily with Teddy. He knew Teddy needed a brother with attention to detail, someone who would notice when Teddy wanted a drink simply because Teddy stared at a cup on the table. He knew Teddy needed a brother with tolerance, one who could handle when Teddy destroyed his creations, ate his food or invaded personal space that doesn't exist in Teddy's mind. He knew Teddy needed a brother who would be curious, interested in learning more about how to help Teddy and understanding Teddy's diagnosis. He knew Teddy need a brother with acceptance, one who would love his brother unconditionally, even if Teddy occasionally drools on him. (Eww, gross!) He knew Teddy needed a brother who would be selfless, who would often inadvertently not be the center of attention when Teddy's health or challenges forced us to focus primarily on Teddy. He knew Teddy needed a brother with a kind heart, one ready to help his brother with tasks of daily life and special projects to brighten his days.

That's why God gave us AJ as our first child, Teddy's older brother.

We could not be more proud of AJ. He is everything that Teddy needs, except for the rare days that he still head butts Teddy because, well, he's human. There have been a couple things in the past few weeks that show perfectly what a tremendous brother AJ is.

When we went to the MTT track meet a few weeks ago, AJ spent the drive there inventing a camera that would enable Teddy to take pictures. It was essentially the camera app of a tablet except on a camera with a touch screen that you tap to take photos. He had other elements to his design, but I'd hate to ruin his patent before he gets that all finished. AJ was so excited about making a camera that was adapted for Teddy and "other people with diagnoses" to use to take pictures. He was even plotting out who he could consult to help make a prototype of this design, and my brother better watch out the next time AJ sees him.

Then there was World CDG Awareness Day last week. AJ proudly wore his shirt and spent the day quizzing us up with 101 questions about CDGs. He was rather disappointed that none of his classmates asked him about his shirt and that he only got to give a card explaining it to his teacher. He then asked me to ask his teacher if I could come explain CDGs to his class. Given that he's in kindergarten, I suggested a more general approach of how some people have different challenges, how people can communicate without speaking and how all kids want to play with others and have fun. So we're working on that for next week in his class because he wants to help others understand.

So proud. Such a horrible smile for pictures. 

And today he came to visit Teddy during the dreaded 24-hour EEG. Not only did he help me pack a few toys for Teddy, he brought a "treasure chest" that he created for Teddy from a cardboard box filled with more toys. He spent two hours playing with his brother, asking a bunch of questions about EEGs and making Teddy's evening better simply by being there.

Best brothers ever.

We're mighty lucky that God knew what Teddy ... and we ... needed.

One of the Reasons Why I Love MTT

I know I continue to write about MyTEAM Triumph, but the organization and people associated with it have become part of our lives. If you're curious why, here's just a few of the reasons:

1. Teddy, and all the other captains and angels, are welcomed with open arms and are accepted for who they are.
2. The other parents of captains get it. Last night I showed someone the Yi Home Camera we use in Teddy's bedroom. She said that his bedroom setup looks identical to her son's bedroom. That's not so often the case when your child's bed consists of a large mattress directly on the floor. 
3. Teddy loves the trailers and trucks that hold all the racing chairs.
4. Someone shut his vehicle doors because he said, "I know Teddy well enough to know it isn't fair to him to leave my doors open." They understand Teddy's desire to explore, are comfortable with it and help me limit the temptations for him.  
5. Teddy loves the racing bicycle.
6. Every time one of the women sees Teddy, she scoops him up for a hug or lets him climb in her lap. She's even sat on the ground, so she could hug him when there wasn't a different place to sit. 
7. It's safe. Not in the sense that Teddy couldn't get hurt somehow because he's Teddy. But we won't be judged for any of Teddy's non-typical behaviors (like licking everything).
8. Teddy loves pushing the other captains.
9.  There's a woman there who adores Teddy, and the feeling is mutual. She scoops him up for big hugs, twirls him around and occupies him while I chat with other people.

I'm sure I'll continue to share our MTT stories in the future, but I'll leave you with these pictures someone shared from last night's run, along with their captions from Facebook:

 Omg I seriously love captain teddy. Kerry Blondheim ur son smile is just amazing ❤

 Love ur sons adventerous soul

The Rest of the Story

I grew up listening to Paul Harvey on the radio, often waiting in the farm truck to hear "The Rest of the Story" before heading into my grandparents' house for lunch. If you're not familiar with Paul Harvey, this was a segment where he would tell, in his gravely voice, some unknown details that really made something special.

With that preface, read the rest of this blog post in a gravely voice.

I shared earlier this week how a stranger stopped in his tracks to let Teddy cross the finish line ahead of him at the Oshkosh 5k. It was incredibly touching because this person was about to be the second place winner of the entire race, and he gave up that moment to help Teddy celebrate his finish.

Well, last night was a celebration dinner at a local restaurant for the myTEAM Triumph captains, angels and volunteers to share our stories and experiences from the race and build upon those relationships. The person from MTT who coordinates everything in our area said she hoped we could make it because she had a surprise for us.

It turns out she was able to locate the man who let Teddy cross first, stalked him a bit as she said, and invited him to come meet with the group. So we were able to meet Andy and thank him in person for his act of selflessness. The folks from MTT gave him pictures from the finish as mementos of his race day.

Meeting Andy showed what a remarkable person he was. First, I can't imagine being invited by a group of strangers to come meet them at a restaurant and actually showing up. Second, he treated both captains who were there as individuals, interacting positively with both of them. Third, he wanted absolutely no recognition and didn't think what he did was a big deal at all. He was amazed by how many views the video had received online.

In fact, he thanked us for letting him meet Teddy. He said that when he saw Teddy about to cross the finish line, he didn't want to take away from that moment. His direct quote was, "You could just see the joy in his face when he crossed the finish line."
 

Thanks to Christina from MTT for capturing the meeting of a true angel and Captain Teddy.

It was an incredible evening that left my heart so full. Not only did Teddy get to meet Andy, but we also got to spend a bit more time with two of his angels and others who fully embrace Teddy and our family. 

So there you have ... the rest of the story.

At least until we convince Andy to run as an angel for MTT and get him to be on Captain Teddy's team for an event. Then I'll write another post with the same title.

(And Dave called me weird for quoting Paul Harvey. I think he's the weird one. Who wouldn't quote Paul Harvey?)

The Motivational Speaker Who Doesn't Speak

One of the things we've noticed about Teddy is that he often brings out the best in people. I'm certain, in our future, his uniqueness will bring out the worst in a select few people, but I'm not going to dwell on that . We'll deal with that when it happens and for now share the amazing ability Teddy has to make people be kinder, more positive and more empathetic without saying a single word.

We spent this past weekend celebrating my grandpa's 94th birthday, so Teddy got his fill of family fun (and golf cart, 4-wheeler and tractor rides). I have one uncle who is quite accurately described as a Southern redneck. I recall Dave being in awe of the stories my uncle told about the good ol' days when dynamite was readily accessible to deal with beaver dams on your property. This same uncle spent the weekend cajoling Teddy at every opportunity to say, "Uncle John" as his first words.

Another uncle marveled at how far Teddy walked by himself and was so excited for him. He said, "That smile gets me every time." This is the same man who I was amazed to learn prays every night for "Teddy in Oshkosh." (He provides a city as a reference point to make it easy for the Man upstairs to direct the prayers to the right person.)

And Teddy has yet another uncle completely wrapped around his finger. This retired construction worker, farmer and trucker readily greets Teddy with hugs, kisses and golf cart rides. My uncle is considerate to ensure Teddy's grandpa gets his fair share of time and attention, but it's obvious Teddy holds a special place in his heart.

As for my aunts, they adore Teddy, which is expected with their personalities. It's when Teddy pulls the sweetness from less expected places that you realize how special his gift is. Most motivational speakers practice their craft for hours on end and use plenty of words with the hope of reaching at least a few people within their audience. For Teddy, he needs no words to work his magic. His smile, laughter and genuine love of life transform those he meets.