Winter Walks

In Wisconsin, we get what you could aptly call a winter wonderland. We get a blanket of snow, perfect for sledding, traipsing through, snowshoeing, skiing, building snowmen and forts and the like. We also get beautiful days in the 20s or low 30s that are perfect for enjoying the snow and nature. We also get days where it's so cold that it hurts to breath outside. With the exception of a few wickedly windy or cold days, we're able to enjoy time outside most days as long as we dress appropriately.

Despite temps around 10°F (without factoring in the wind, which always makes it feel colder), we went for walks on Christmas Eve and Christmas Day. It was wonderful to be in the woods, enjoying the stillness and the natural beauty that exists even without snow. The day after Christmas, Dave and Teddy did a nice mile loop while AJ tried out his new bike and I chased him huffing and puffing for 3 miles. Let's just say that a 7-speed bike increases his pace that I'm going to have to do some speedwork to hang with him this upcoming summer. Then on Sunday we explored a new-to-us wetland with a boardwalk into the water and a trail of sorts through the woods. 

The challenge on all these walks is whether we chase Teddy, who doesn't have the stamina for a mile-long walk, takes off running in random directions and sometimes flops to the ground and refuses to move. That's a challenge if we still have a long ways to get back to our starting point, so for longer walks we'll take his chair. He can get out for portions but can also be safely contained and transported rather than a fireman carry as he actively resists. So we took his chair to explore the new wetland place, which worked great for the boardwalk and part of the trail. Then the trail became non-existent aside from markers on trees. Dave and I each took a handle and pulled his chair backward to navigate the rough terrain. So on the way back, we took to the ice for a much smoother (and more fun) ride. I could even spin Teddy 360° in his chair on the ice. AJ had fun exploring the bubbles in the ice and all the other little wonders of nature.

Note the "trail" as Teddy enjoyed peering through a hole in the ice.

That afternoon we got several inches of snow. I bundled Teddy up and headed to a park that was empty. We spent close to an hour playing in the park, whizzing down the slides. (For those of you not native to winter wonderlands, a sprinkle of snow makes slides faster. As a child, we'd carry handfuls of snow to the top of the tall slide and dust them on to make our trips down even faster.) It was really enjoyable to just follow Teddy where he wandered and let him do his thing (aside from the construction equipment that we weren't going to explore). We both love being outside, and it was great to enjoy it together. 

This face mask keeps him warm and lets him chew on something-double win.

On a side note, I'm grateful my new snow bibs fit both our sitters because they have many snowy days to play with the boys. Lucky them, right?

Merry (Belated) Christmas!

 I hope you enjoyed a wonderful Christmas, Hanukah or whatever holiday your family celebrates. For us, our Christmas looked a bit different yet still was merry and magical. We missed the large family Christmas party and what a fun time the cousins will have when they all get together again in person! We got to see both sets of grandparents, although nerf gun battles while wearing masks is a bit interesting. 

Christmas is full of magic for our boys, from our elf Bernie who visits for the season to the surprises from Santa under the tree. We were even gifted a kit to grow candy canes from seeds this year, which was so special to see. I'll tell you, there's something about a freshly grown candy cane!

Some of the magic is lost on Teddy, although he fully embraces the fun of opening presents. He seems to find that most exciting when they're not his and when he's not supposed to open them. We had to keep our gifts in boxes tucked in the back of the tree or they all would have been opened by Teddy. Yet, on Christmas Eve, he had no desire to unwrap his last present, so it stayed under the tree untouched. 

Teddy, however, fully appreciates the time with family at the holidays. He was so excited to visit with both sets of grandparents. He jumped for joy to see them and then promptly dragged them off somewhere to play with him (often the basement). The best was that when Teddy wanted to go outside, he knew exactly who to approach. He got his coat and boots on and then went to grab Grandpa's hand. If anyone was going outside when it was 15 degrees, it was going to be Grandpa. He also learned that if he was dragging Grandpa to the basement to play, he needed to let Grandpa grab his mug of coffee first. 

We were blessed to spend a bit of time with my grandpa, who is 98 years old. There's something so special to see him and Teddy interact. Neither of them listen (because one's partially deaf and the other is Teddy). Both think they are right no matter what. Both lack a concept of safety (because one's 98 and the other is Teddy). Yet that doesn't stop Teddy from hopping on Grandpa's lap, even when there's no room, or trying to push him down the stairs on his walker. (We put the kibosh on that one.) Teddy pushed Grandpa into the other room, and the two of them were in there alone arguing with each other over whether Grandpa would get on the floor. (As in, Teddy kept instructing Grandpa to get on the floor, and Grandpa kept refusing because we'd never get him up.) Teddy seems to realize Grandpa is not going to comply with all his wishes and instead climbs on his lap, pushes him around and shares toys with him. I  love watching the two of them because they've both come so far from when my grandpa would ask me, "When's he going to talk? When's he going to walk?" Teddy's learned to do so much, and my grandpa has learned to understand Teddy even without a word spoken. 

These two melt my heart (and crack me up).

Despite some rather chilly days, we managed walks every day of the long holiday weekend. I absolutely love being outdoors, particularly in the woods, so those were highlights of my days. Teddy also could happily spend most of his time outside and seems to have little regard for how chilly it might be. 

Everyone complained it was cold, but no one else would carry the portable heater.

All in all, it was a wonderful Christmas. We're so blessed and grateful for our health, memories made and all the good of the past year. 

Sitters and Semantics

I struggle to find the right word to define our childcare providers. I tend to lean toward childcare provider to give more credibility and professionalism to what they do, but sitter is a lot shorter. With the amount of time they spend in our home, nanny is also an appropriate word. The reality is they are an extension of our family.

We've been blessed with a number of amazing caregivers for our children in years past (Ms. Jenny, Miss Kaitlyn and Miss Melanie), but our reliance on and appreciation for our current two is at another level. Some of that may be the result of the pandemic and the need for tighter circles, but Miss Sigrid and Miss Bri are both incredible young ladies.

They take our crazy chaos and roll with it. They know that sometimes I'm more excited to see them when they arrive than the boys are because they ease our stress. We know the boys are completely cared for and in good hands, despite that occasional text that Teddy swallowed a nerf gun tip or fell down the stairs. (That happens with us, too!) They have done countless library or school pickups to save us trips and time out of our work days. 

We joke that Sigrid is our oldest child, so she joined family photos.

They spend countless hours playing imaginary with AJ and working through his moments of frustration when things don't go as planned. (That boy takes after me in that regard, and unfortunately life doesn't go as planned.) They encourage his creativity, help him with his handwriting and engage him in physical activity while making it fun (Wiii sports or games chasing around the house).  

They shuttle Teddy to every appointment and actively work with him through therapy sessions and then report back to us what to work on at home. They even update his "school" list with new things to work on. They are his primary teachers this year, working on all his academic skills at home through the course of their play and some intentional school work time. They give Teddy his medications and both know how to respond should he have a seizure. 

This was in 2019 when Ms. Bri made a Packers bike ride possible. 

With the weirdness of COVID, they've shared countless meals with our family and spent nights in our spare room to assist the next day (or to avoid their roommates in quarantine). We all enjoy each other's company during the meals, and another set of hands minimizes the risk of Teddy running off with a knife or something else dangerous or messy. They walk the line between playing with the boys and serving as an outlet for adult conversation for us. 

The sound of Ms. Bri's laughter always makes me smile because I know how much fun they're having. Ms. Sigrid has hauled Teddy on bike rides throughout the summer, with AJ pedaling along side her. They've done nature walks, hikes and road trips. They've joined us for holidays and family photos. 

They have made the pandemic better in so many ways, in all our interactions, their creativity, their safety awareness and their positive attitudes. They have made the pandemic possible by working the hours they do to allow us to continue working. 

When we count our blessings, Ms. Bri and Ms. Sigrid are near the top. For Christmas, Ms. Sigrid gifted us with a photo of her and the boys, so we don't forget her while she's gone student teaching ... as if that's possible. These ladies will forever be welcome in our home. 

Thanks to Variety!

Yesterday we got a package in the mail from Variety, a Wisconsin-based organization that supports families who have children with disabilities. Variety assists with everything from adaptive bikes to allow children with disabilities to just be kids. Variety also hosts a variety of activities to give these families a chance to enjoy different outings and activities that might not otherwise be available to them. Their goal is simple, according to their Web site: Enriching the lives of children with physical or developmental special needs and their families. 

Last year was the first time that we joined any of their events as many are further away from where we live. But they hosted holiday gatherings throughout the state, with one near us, at local movie theaters. Our family was able to go to a movie, visit Santa (and creeper stare at him as Teddy is fascinated by him but not so sure about up close and personal) and got a few treats for the boys. It was a great experience, although predictably Teddy watched very little of the movie. He enjoyed himself exploring the theater, and it wasn't a bit deal that he didn't sit nicely the entire time. It was a welcoming and inclusive environment, which was so appreciated. 

This summer they did summer picnic baskets, so we used that as an excuse for an outing to make the drive to pick up the goodies. The boys had so much fun with the treats, and we enjoyed a break from the usual pandemic routine.

The holiday gatherings didn't happen this year, but they offered Christmas goodie bags. We didn't want to commit to making the drive in case the weather was bad, yet they mailed a box of fun and goodies for both our kiddos to our house. We're waiting to dig into it until this weekend but are looking forward to it.

It's little things that make a big difference. Variety is less about the treats or goodies and more about the inclusion and acceptance. 

Teddy's Gift

 It might sound weird, but during these pandemic times I make a point to deliver goodies to others with Teddy in tow. These visits are brief, distanced or through glass doors and masked as best as Teddy masks. Sometimes, though, it's worth the glass barrier or greater distance because then they can see the gigantic smile on Teddy's face.

I know that for many who we visit the greatest gift isn't the little treats. It's that classic Teddy smile. It's him showing off a few new dance moves (or his boots during today's visit by shoving his foot out the window). It's the giggles that he gets when he's being silly, like dropping a ball for me to catch through the car window. 

These are ordinary moments in our lives, things we get to see daily. Yet I appreciate how much joy they bring to others who know and love Teddy. That's why he accompanies me on the visits or comes to the glass door to high five through the glass when people stop by our house. 

I may bake the cookies or bread, but I know those brief interactions with Teddy are the true gift that makes people's days brighter. 

It's a Small World

As I alluded to in my last post, we often have an instant connection with other families whose child or children have CDG-PIGN. Each of our children is incredibly unique, yet there are so many commonalities ranging from sleep struggles to heart-warming smiles. We've discovered that many of our children sound similar, walk or move in nearly identical ways and other common threads that are tough to find when your child is like no one else in your community. 

Thankfully the Internet allows us to connect with others across the world. One of the first families we met on our PIGN journey is from Poland. The mom is an incredible advocate for her daughter who started our Facebook group that has brought so many others into our world. We often get a beautiful Christmas card from Poland (specifically addressed to Teddy, of course) with snippets of Polish and English translations. I will say, once again, how impressed I am at how well others can communicate in English. But that's another conversation on how Americans, in general, lack the language skills many other countries foster.

This card is like a hug from Poland.

This is about gratitude that Teddy's diagnosis has made the world smaller, connecting us with others around the world who I consider our PIGN family. We've met a handful of these families and have high hopes to meet others. There's two little boys in New York that I would love to see interact with Teddy because I swear one of the boys is his brother from another mother. Then there's the two older boys in Florida that I'd love to meet as a glimpse into what the future may hold-I'm only mildly jealous Dave got to meet them in February. Oh, then there's the little girl in Germany who I jokingly call my German goddaugher. And the family in Poland. As you can tell, in reality, I'd love to meet as many of these children and families as possible. 

For those we've met, there's an instant comfort and understanding. There's no need to explain our children or apologize for their unorthodox behavior. For me, there's often a sense of awe as I marvel at the similarities or creative solutions other families find. So, when we can travel again, we'll continue to reach out to meet up with those along our path.

For now, we treasure these Christmas cards and the friendships that span languages, countries and oceans because of the common thread of a variation on a single gene that alters lives and forges friendships. 

A Loss We All Feel

Ironically my last post was titled Feel No Pain, yet pain is exactly what I feel right now. Yesterday, one of our PIGN kiddos, passed away. Although we never had the opportunity to meet this little boy or his family, we feel his loss in an incredibly personal way. He had a sweet smile, wonderful personality and was adored by his family. He had an older brother who loved him fiercely and interacted with him at his level, just as AJ does with Teddy. He had devoted parents who adored him despite the challenges that come with the intense needs of a child with CDG. 

His parents' grief touches my heart because it could so easily be our grief. I've felt this grief before when we've lost other children in our group. It doesn't get any easier. In fact, it gets harder. 

Although it's most likely that Teddy will die because of his CDG-PIGN diagnosis (or related reasons such as his utter disregard for safety), I manage to disassociate from that thought most days. It hit home when good friends of ours lost their son unexpectedly early this year. His dad made the comment that his son's genetic disorder didn't come with a shorter life expectancy like Teddy's disorder. That comment struck a chord with me, as did Dave's response when I shared it with him. Dave's response confirmed the reason he spends so much time worrying, and worries so much when Teddy gets sick, is that he recognizes that any illness could be the one that takes Teddy away from us. Dave believes this worrying will help prepare him should that day ever come, and I acknowledged I don't feel there's any way I can mentally prepare for that.

Despite having those conversations, that thought still too much for my heart to hold. So I continue to distance myself from those thoughts. Yet times like this hurt my heart for this sweet little boy, for his family and for what could be our future. I know there are others around the world, whose children have PIGN, who are crying the same tears and sending prayers and love. So if you're a person of faith, please include this sweet soul and his family in your prayers today. 

Feel No Pain

First, let me state for the record that Teddy does feel pain. His testing through NIH showed that his nerve receptors function fairly normally, and he will cry from pain. However, he has an extremely high threshold for pain unless he is tired or crabby. Those factors seem to impact his ability to tolerate pain, where we'll see tears. However, those tears never last as long as they would for most people.

The other weekend, I was making a quesadilla for my lunch in a skillet. Teddy had already devoured most of his lunch, so I quick ran downstairs to get him an orange. When I came back upstairs, he was holding a spatula, poking my quesadilla and looking quite proud of himself. I shooshed him away because I didn't want him to get burned (and candidly wanted to not have my lunch mangled). We both finished our lunches, if you consider Teddy eating part of my quesadilla me getting to finish my lunch.

About an hour later, I was playing with him and noticed a nearly 3-inch mark on his arm. I instantly knew that he had burned himself. He never yelped, cried, made any sound or had any noticeable reaction to burning himself. His burn even blistered, so it was a significant burn and will leave a dandy scar for at least a few years.

These are the things that are tough with Teddy. His safety skills are non-existent because unsafe things are fun. The more dangerous, the more fun. And when something is fun, he tends to get the giggles. The giggles diminish his ability to walk straight, much less stand up without falling down, which means it's even more dangerous. Combine that with a high pain threshold, and there's plenty of mystery marks we never quite know how they occurred. 

I wonder how many concussions he's had through the years, but I'm quite sure I really don't want to know.