Sunday, July 31, 2016

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.

Thursday, July 28, 2016


One of our favorite things to do before children used to be camping. It's still one of our favorite family activities, but we've made a few tweaks along the way to accommodate two children. For example, we now plan easy meals like penny hot dogs rather than time-consuming ones like shish kabobs. We also expect to get kicked, punched and boot stomped through the course of the night as we have one, sometimes two, young ninja warriors sharing our air bed with us. But it's worth it for the family memories.

Hammock time with Teddy is fun, just not relaxing.

We headed to Porcupine Mountains State Park in upper Michigan last weekend. This was the first place we ever took AJ camping, but Teddy's never been, which means we haven't made it there in more than years. Huge storms had ravaged the area twice in the past week or so, so roads and trails were closed along the way and there was no power when we arrived. Since we camp in a tent, that didn't impact us too much beyond walking a bit further to use the pit toilet for the first couple hours until power was restored.

Friday was nearly 90 degrees, which is rather toasty for the shores of Lake Superior. We made the most of that by enjoying Lake Superior when it's usually frigid waters felt slightly warmer. Both boys loved the water, although Teddy kept trying to drink the waves as they came in. I'm pretty sure he wasn't thirsty ... just having fun.

Check out Captain AJ's sand beard ... and forehead ... and chest ... and legs.

We spent time at the beach both Friday and Saturday, playing in the water (Dave rudely tackled me in one day because I "accidently" splashed him a little bit.), collecting rocks (AJ), trying to escape up the wooden stairs (Teddy) and having plenty of fun (all of us).

Teddy thought this was pretty funny.

Despite the heat, we did a bit of hiking around the Presque Isle area, which is a gorgeous place with waterfalls, wild blueberries and trails to explore. It's fun to watch AJ learn to forage for wild berries and teach him which ones are which. He's a huge fan of thimbleberries, as is Teddy. They're a delicious berry that we've only found in abundance in the UP. My best description of them is they taste like a fruit rollup, and I mean that as a good thing. We were lucky they were starting to ripen while we were there, so we at least got to sample them.

Last time we were here, there was water covering this crossing.

AJ's favorite type of hiking is rambling scrambling on rocks. He liked checking out Lake of the Clouds between the storm damage on the board walk with the caution tape around the openings, the views of the lake with the magnifying viewer and scrambling up the rocks. Teddy had been up early that morning, so he was a bit tired but made it until we started heading home to snooze.

AJ showed me the path around the water.

It reminded us of how much we enjoy camping, so we're going to squeeze in as much as we can yet this late summer. In two weeks, we'll head to Pictured Rocks, which is one of our favorite places.

Tuesday, July 26, 2016

Bay Beach Birthday Fun

Last week on Teddy's birthday, Dave took the afternoon off to spend the day together as a family. Even though it was nearly 90 degrees, we headed to Bay Beach Amusement Park in Green Bay. It's a place with all sorts of carnival rides, and tickets are only a quarter. Granted, some rides cost 4 tickets, but the most you pay for any one ride is $1. So for less than $30, we spent a couple hours going on rides and cooling off with a combination of ice cream, root beer floats and frozen lemonades.

We had missed the Ferris wheel the one time we went last year because a storm came while we were in line. I took both boys on the the Ferris wheel and managed to keep Teddy in the chair the entire time. He really enjoyed it, aside from being a bit antsy while they loaded the entire wheel since we were the first ones on. As for me, I got to experience why my mom didn't liked the Ferris wheel. I never thought a Ferris wheel would make me queasy, but apparently my equilibrium likes to be messed with less as I gracefully age. AJ loved it so much that he begged to go on a second time, so Dave took him for a spin while Teddy and I hit up the carousel again.

I'm sure that safety bar was plenty delicious ... hey, it kept him in the car.

I think it's a fair statement to say that Teddy believes the carousel is one of the greatest things on the entire planet (along with the slides at the water park). He gets so excited when he sees it and puts some pep in his step as he's walking toward it. He does a great job holding onto the handle, unless he sits on the antelope. Then he holds onto the antlers because ... well, why not? Teddy rode the carousel at least 5 times and enjoyed it as much the last time as the first time.

My favorite picture of the day.

We also checked out a few other rides, like a big ship that we all rode together, and a train that loops through the park. Teddy also really liked the giant slide that required me to climb 3 stories worth of stairs while lugging him and a burlap sack. (I'm not complaining about the burlap. That wasn't the heavy part.) It was worth it for his giggles on the way down.

Birthday boy smiles.

It was an absolutely perfect afternoon as a family, making memories and celebrating the joys of childhood fun. I thought it was cool that two of the rides Teddy wouldn't have been able to do earlier in the summer because you had to be at least 3 to ride. Wait ... had we went earlier, then I wouldn't have had to carry him up three stories of stairs ...

And if you're wondering, his brand new white shirt was no longer white by the time we ended the day, especially not after cake when we stopped by his grandparents' house for supper while we were there.

I shall smear this everywhere. Cake in my hair? Don't care.

Wednesday, July 20, 2016

Happy 3rd Birthday Teddy!

Three years ago Teddy made his entrance into this world, taking everyone by surprise a bit although his arrival was completely expected. He simply did things on his terms, and that hasn't changed at all in the past few years.

Teddy's birthday brings mixed emotions for me. I almost ended up in tears walking the toy aisles because the toys that would entertain Teddy aren't the ones marked 3-5 years of age. I'm reminded, not that I ever forget, of how far he lags behind milestones ... and how he may never hit some milestones ... and how much I would love to hear him say, "I love you."

Instead, I know that for now, his laughs, smiles, arm flails, squeezes and tackles are his way of telling me, "I love you." And by that measure, Teddy tells me, "I love you" many times every day.

As much as that sadness lingers for what isn't and what may not be, birthdays also serve as a reminder of how much Teddy has accomplished. Two years ago today, Teddy got into a seated position by himself for the first time (in our tent at Crater Lake National Park after a horrid night's lack of sleep ... not that I still remember that). Last year, we caught him clapping for one of the first times ever while taking his 2-year pictures. He used his gait trainer at his birthday party last year for close to 30 minutes, which was a record for him, and a long time for everyone to dodge him because he had no concept of steering and crashed into everything and everyone.

In the past year, Teddy's babbled. He's learned to give high fives, although we need to keep working on that to keep it fresh in his mind. He's given me my first true, intentional hug. He understands the command, "load up," and willingly grabs on for a piggyback ride (although we're still working on holding on the whole time). He's able to climb on and hold on while I get him tucked into a back carrier. He's climbed everything that could possibly be climbed. He can walk fairly long distances holding two hands for assistance. He can walk short distances holding one hand for assistance. He can walk 10 feet by himself. He can balance standing for nearly 5 seconds. He can stack rings. He plays the "stinky feet" game. He's taught us how to understand more of his preferences when he communicates his wants.

This is typical Teddy, climbing and smiling.

When we got Teddy's diagnosis last November, we were shocked to read in the literature provided to us after we left the geneticist's office that, "Most affected individuals die before 3 years of age." We wouldn't share the name of his syndrome with our parents until we received clarification from our geneticist that there was no reason to believe Teddy's health or life was in immediate jeopardy.

In the past 8 months, we've connected with 10 other families who have children with the same diagnosis as Teddy, which has been a tremendous blessing. We've mourned with those families as two children passed away this year well before the age of 3. And we still remember their losses.

But today we celebrate Teddy. We celebrate that he's defied the medical literature, and hopefully his story will someday be included to give other families a better prognosis. We celebrate all that he's accomplished and look forward to another amazing and fun-filled year with him.

Happy 3rd birthday Teddy!

Monday, July 18, 2016

Party Like It's Your Birthday

We celebrated Teddy's birthday this past weekend, although his birthday isn't until this Thursday. Since he giggles and laughs whenever we play the Purple People Eater song, we did a purple people eater party. Last year I started the tradition of baking sugar cookies. I like that because then we can give them to Teddy's therapists and team members, so they can join in celebrating with us.

Monster cookies are easy to frost because they can look messy.
Of course, we still need to have cake. The monster cake had gold wings (to fly obviously) and a golden horn. Let's just say that Teddy had fun devouring his horn once I filled it with ice cream. He did a great job isolating his pointer finger in the bottom of the cone once he ate the bottom.

Silly purple people eater ... we'll eat you!
There's a funny story about our purple people eater toy, which hadn't been working for months despite new batteries. I asked my brother, who is a computer engineer, if he could fix it. So he ripped it apart, cut wires and the whole nine yards. Turns out one of those new batteries didn't work, which was the whole problem. So after soldering the wires back together, the purple people eater worked just fine. Oops. Guess next time I'll try two new sets of batteries just to be sure.

Purple smile.
Teddy's always been fond of food, and Dave caught him looking quite serious while destroying his cake and ice cream horn. He managed to stay awake until everyone left (aside from my family who were staying longer).

Dad, I'm busy eating right now.
I feel like this is the first birthday where he's really been interested in ripping open presents. He did pretty good with the first present and then was completely distracted. (Why do I need to open anything else? This is awesome!!!) Fortunately, he has an older brother who was more than willing to help.

Opening presents is a milestone for Teddy.
Teddy loved playing with all the family and friends. Whether it was joining the water balloon fun outside and playing with the hose or wrestling inside, he had a great time at his party. Thanks to everyone who was able to join us celebrating Teddy's birthday.

It's my party. I'll tackle you if I want to.
P.S. You can expect a birthday post later this week as well.

Thursday, July 14, 2016

One in a Billion

Earlier this spring, we were interviewed by the Milwaukee Journal Sentinel about our experience with exome sequencing to obtain Teddy's diagnosis. One of the first recorded instances of using exome sequencing to diagnose and treat a person involved a child treated at Children's Hospital in Milwaukee. The reporters who won a Pulitzer Prize for their series on that child released a book this spring One in a Billion that details the amazing story of a genetics team that pushed it's goal for exome sequencing a patient for the purpose of medicine up by 5 years to save the life of this little boy named Nic Volker.

The story that changed our lives ... before we knew it.

After reading the book, Dave connected to Nic's mother via Facebook and told her that our family owes her family a debt of gratitude. After reading the book, I completely agree.

This family paved the way for the testing that gave us Teddy's diagnosis, not only in the world, but at the same hospital where Teddy was referred. One of the neurologists who treated Nic is the same neurologist who referred Teddy for genetic testing. I'm sure all doctors know that genetic testing is now an option, but I wonder if he wasn't quicker to refer because of having been involved peripherally with the care of the first child sequenced.

The genetic counselor who met with the Volker family is the same one who spent hours explaining to me exome sequencing, the risks and the potential rewards. The conversations we had mirrored those she had with the Volker family. This genetics team set the standard of what information must be released with families and what families can choose to know, which can be a remarkably complicated topic. (There were 6 categories of information, some of which would automatically be released to us and most of which was our decision ahead of time what we wanted to know.)

Although the Voker family endured far more medical challenges than I ever hope to encounter, I connected immediately with this story because in many ways it mirrors ours. A family searches for answers, unable to find a diagnosis through traditional methods. This family pioneered the technology that gave us a name to Teddy's syndrome, as we called it before we knew it as Multiple Congenital Anomalies-Hypotonia-Seizures Syndrome 1.

I know the future of genetic testing and diagnostics is rapidly advancing. It amazes me me think that the process that took from early summer until November 13 for Teddy can now be done in less than 2 days. (I think that although Children's Hospital was a pioneer in exome sequencing, they're not necessarily the leader now with the best technology. Heck, nobody expected a group of people in Wisconsin to pioneer this ... Wisconsin isn't exactly the world-renowned for much aside from cheese, Green Bay Packers and beer.)

If you're looking for a deeper understanding of how Teddy was diagnosed and the marvels of modern medicine, I highly recommend One in a Billion.

Monday, July 11, 2016

Family Hugs

Yesterday, I came home after being gone 5 nights. And it felt good to be home and see my boys again.

AJ hugged me tightly, squeezing his eyes shut in pure bliss to be in my arms. Teddy gave me the most complete hug I've ever received from him, squeezing and holding both arms around me for the first time I can recall. And Dave cried tears of sheer joy to have me home. (OK, I'm joking there. He actually said he felt like he cheated because the sitter had the boys 3 days, and our sister-in-law largely watched them the last 3 days because Dave was helping his brother build a garage.)

It felt so good to be so appreciated by both boys. I know they love me dearly, and I love them fiercely as well. But we spend so much time together that we never have the opportunity to actually miss each other ... or fully appreciate how awesome each of us is. This break gave us the chance to do that.

Maybe Teddy missed me, maybe not. He was certainly happy to see me. I know AJ missed me. AJ told me as much. And he asked repeatedly when I'd be home.

If I'm being perfectly honest, I didn't spend my days missing my children. I was happy to be back and happy to see them, but I didn't really miss them. I was too busy with work meetings and making the most of my time to myself. Had I been gone a bit longer, perhaps I would miss them.

Maybe I'll try that next time.

Saturday, July 9, 2016

Filling My Bucket

"The mountains are calling and I must go."

How can you not answer this call?

This John Muir quote captures perfectly how I feel about the mountain. So when a work trip to Boulder, Colorado put me an hour away from Rocky Mountain National Park, I took full advantage to explore more of one of my favorite national parks. (My current top five includes, in no particular order: Rocky Mountain, Zion, Yosemite, Isle Royale and Canyonlands. This list is subject to revision upon visiting the remaining national parks.)

Considering Dave just came home from nearly two weeks in Europe, I didn't feel too guilty tacking an extra two nights onto my time away from home. (He had the sitter for three full days while he worked (much shorter days than normal for him) and only one tumbling class where he got to watch AJ. Trust me, I did my best to make it an easy 6 days for him.) I packed an extra bag with a tent, sleeping bag, sleeping pad, hiking stick, hiking boots, daypack and perhaps the most important item: a hammock. Do you know how relaxing it is to lay in a hammock by yourself without feet and arms and children smushing every part of your body? I do now.

I managed to put on more than 20 miles of hiking (with 3 pitiful running miles because I simply couldn't pull in enough oxygen to run) in less than two days. I hiked my pace, when I wanted, where I wanted and loved every moment of it. I saw amazingly beautiful lakes, rivers, forests and mountains.

I thoroughly appreciated the opportunity to carry only what I needed for myself instead of family-sized portions of food, water, diapers and, you know, 35 to 40 pounds of child. But as I enjoyed the serenity of a mountain lake, I also realized that I will carry Teddy wherever I can for as long as I can because he deserves to enjoy the amazing wonders that can only be found by hiking.

Imagine enjoying this view all to yourself.

Plenty of people seemed in awe that I camped by myself. I didn't really.  I mean, there was a bear in the campground as I was setting up my tent ... with a ranger using an air horn to encourage it out of the camp sites. I had a deer wander 25 feet from me in my hammock. I had some random guy open my bear box thinking it was a garbage can. (I'm still a bit confused by that because every site has a bear box, and the rules are explicitly explained to you when you check in that all smellables need to be stored in said bear box ... not to mention that my bear box was in my camp site 10 feet away from my hammock where I was hanging out.)

Hiking alone was also quite concerning, particularly to my mother. I recognize that anything could happen anywhere, but I firmly believe I'm exposed to far more dangers in populated cities than hiking where I did in Rocky Mountain. I've come to to the realization that although I might not want to encounter a rattlesnake or black bear on the trail, they likely will not kill me. Grizzlies and mountain lions, on the other hand, probably would view me as a tasty treat. Thankfully, Rocky Mountain has no grizzlies, so I just kept an eye out for the mountain lions I would never see until they pounced on me.

I love hiking by mountain streams.

My time in the mountains was everything I hoped it would be. There's something magical about the mountains that restores my balance and completes me. I only hope I can answer their calling again soon.

Monday, July 4, 2016

Jump Around

Happy 4th of July to you! We spent the weekend up north with Dave's family, which is an awfully fun place for our boys to explore and play with their cousins. They enjoyed the swing set, the sand box, the trampoline and the assortment of tractors, 4-wheelers and lawn mowers. Teddy's favorite thing is to rotate among all the vehicles, climb onto one, sit there proudly for 30 seconds and then move onto the next one.

As I watched Teddy's younger cousin bouncing happily on the trampoline, I was wistful for a few moments. Although Teddy likes to be bounced on the trampoline, he's a long way from independently jumping on the trampoline. The moment passed as I went to chase Teddy to the next climbing obstacle. (For the record, he's fairly safe with all except for the tractor. That's where I spot him pretty closely.)

Later that night, Teddy was supremely excited to be near his bigger cousins and brother playing on the air mattress. Teddy was standing near the extra-tall mattress, swinging his arms into the bed to bounce it. That's when I noticed that he was jumping at the same time. I kept watching in amazement as he jumped in excitement. He was stabilized by the bed, but he was jumping in his own way. That accomplishment swept away that wistfulness from earlier in the day.

Our fun continued with swimming at the lake, ice cream at town and more time playing with cousins. Teddy managed probably the funniest moments of the weekend simply by being himself. When we were tossing horseshoes, Teddy was buckled in the stroller to keep him contained away from flying metal objects. Well, he reached around, snagged a Mike's hard lemonade from the drink stand atop the stroller and proceeded to do a nice long pour from high in the air covering himself. Thankfully, his aim isn't so swell, so he only got a taste. He certainly had quite the style ... a classic Teddy moment. (And if you think about all the fine motor skills to pull off that escapade, well, that's like a whole session of OT in less than a minute.)

The other classic Teddy moment was also a testament to how far his fine motor skills have come. At breakfast this morning, his younger cousin was eating watermelon next to him. All the adults warned her to keep her fork away from Teddy, but Teddy decided he needed more watermelon. He quickly reached across his body, grabbed her fork and shoved her watermelon in his mouth in one smooth move. None of us could stop him, partly because he was that fast and partly because we were laughing so hard. (We did make Teddy share a bite of cookie in exchange for the pilfered fruit.)

For all the times I let myself become melancholy about the struggles Teddy faces and how much harder those struggles make life, Teddy manages to do something amazing ... and often hilarious. It's his way, and God's way, of reminding me to let Teddy be Teddy. He's amazing in his own right.