Happy (Belated) Thanksgiving

I know it's a few days late, but I hope you enjoyed a safe, blessed Thanksgiving. Our Thanksgiving looked different than years past, as was the case for many people. Traditionally Dave has spent Thanksgiving up north hunting with his dad and brothers (although last year he opted out of hunting for the first time in a long time). I head to my parents' house on Wednesday, spend a hellish night because Teddy is possessed and doesn't sleep, get up early to run the turkey trot with my brother (followed by beer and cheese curds because I live in Wisconsin) before heading home to celebrate with my family and the crew there for deer hunting. 

This year, for the first time, we bought turkey and planned to make our own Thanksgiving dinner. The advantage is we could make what we wanted: turkey breast, mashed potatoes, gravy, Grandma buns, green bean casserole and pumpkin churro cake. It wasn't just the 4 of us, though, because one of our childcare providers opted to stay in town for the holiday. She's an incredibly responsible young lady (and I'd say that even if she didn't read the blog), and she felt it was safest to stay within her circle rather than heading home to her parents' house for the weekend. We're truly grateful for all she does for us, including her conscientiousness to protect Teddy from potential exposure to COVID, so we happily welcomed her into our home for the day. Trust me, it makes our lives easier to have someone to help wrangle Teddy. She manages to dance the line between playing with the boys and having adult conversation with us, so we all enjoy the time together.   

Two turkeys did the turkey trot/bike ride this year.

AJ and I headed out for our turkey trot, with him on his bike, and enjoyed 5 miles of fresh air. The boys snacked on pumpkin pie before we started making our meal. AJ was enthralled by the parade, and Teddy periodically stopped to dance when the music caught his attention. We watched the dog show and provided our own commentary as we enjoyed a delicious meal. 

Our afternoon was rounded out by some time outdoors, a Christmas movie and some leftovers when we had a bit of room. Then we went to opening night of a choreographed Christmas light show designed and programed by an 11-year-old in a nearby neighborhood.

I know Thanksgiving was different for so many this year, especially those who lost loved ones. There's a few people who hold close in our hearts this holiday season, knowing that the joy of the holidays brings new waves of grief for them. Yet, we have so much to be thankful for and enjoyed a truly blessed Thanksgiving.

Progress, not Perfection

The other week Teddy and I went for a run together. Given that we live on a cul de sac road that heads into a busy highway, our runs always involve driving to another neighborhood to run. This time we parked at a local elementary school, the one where Teddy spent his Early Childhood year when he was a mere 3 years old. That was the year we went from both kids home to both kids in school, at just 3 and 4 (and then 5 since AJ had his birthday right after school started). 

That was right after Teddy had learned how to walk, so he was only taking a few tentative steps. He spent most of his time crawling, or actually bunny hopping, to get around. When his class went anywhere, he rode in a wagon every single time because he couldn't walk more than a few steps without falling. AJ would get so excited if he spotted Teddy's class, so he'd always wave and call out, "Hi Teddy!" I know that AJ was only in 4K, but it gave me so much comfort to have them riding the bus together and to know AJ was at the same school to look out for Teddy. 

Partners in play, running the streets and the playgrounds.

Back to present time, we decided to take advantage of the empty playground at the school near the end of our run. Teddy was so excited to be able to play, and he had to check out everything. The first thing he did was a rope bridge that was probably 10 feet across. I encouraged him to hold onto the sides, and he made it 3/4 of the way before he stumbled and fell. I asked him what he was going to do, and he used the ropes to pull himself back upright and finished the bridge. 

For most kids, a rope bridge is nothing noteworthy. But, I was so proud of him because he's come so far. The last time he played on that playground, he couldn't do anything without assistance. Now, he could do just about everything, except for monkey bars and the like, which are understandably tough. It was no big deal for him, just another wonderful playground to explore. For me, though, it gave me the chance to pause and reflect on all the progress he's made with a truly grateful heart. 

Epilepsy Awareness Month

 November is Epilepsy Awareness Month. Teddy's seizure disorder means he fits into this month, another one to celebrate along with Rare Disease Day and World CDG Day. Epilepsy gets its own month, though, and certainly is deserving since it affects a large number of people in significant ways. 

Yet, strangely enough, I don't think of Teddy as someone with epilepsy most days. I think there's a level of denial for me despite the fact that he's had multiple seizures. I think perhaps it's because the seizures are the hardest aspect of his diagnosis. 

I know I've written recently about how life with Teddy is hard. The developmental and cognitive delays are tough, particularly on some days. But every seizure stops our world for as long as the seizure lasts, and the aftermath lasts days, if not longer. There are few things more terrifying that I can imagine occurring than watching your child losing control of their body, becoming unresponsive and sometimes failing to breath. Then picture that happening periodically, unpredictably.

For us, we know that illnesses, particularly with fevers, can trigger seizures. That means we're hypervigilant during flu season (or a pandemic) and any time Teddy is ill. We're on alert, watching for a fever, watching for signs of seizures. It's common for Dave to sleep with Teddy when he's ill, just in case, because there's always that fear of a seizure while he's sleeping that we don't catch.

Teddy recovers from most seizures remarkably well, bouncing back with no loss of skills or apparent lasting harm. However, he's stopped breathing during seizures. He's had multiple seizures last more than 5 minutes. He's been intubated because either the seizures disrupted his breathing or the medication to stop the seizures diminished his breathing to the point that was necessary ... to this day, I'm still not clear because he never became responsive from that series of seizures until hours later when he was quite agitated to discover a tube shoved down his throat. 

We're used to daily life with Teddy, and we're grateful that seizures aren't a part of daily life for Teddy. For others with his diagnosis, seizures are an every day occurrence. Rescue medications for them are a weekly or monthly need, as opposed to our rare times with Teddy. 

But we know seizure activity can change over time. The medications that work so well may not always work their magic for Teddy. Puberty is tough, with all the hormonal changes, and tends to increase seizure activity. 

I pray to God that seizures never become such a regular occurrence that they don't' phase me. We celebrate the periods between seizures, yet acknowledge that more are likely. Generally, we say, "It's really going to suck when he has a seizure again." It's been nearly 1.5 years without a seizure, and we're so grateful for that.

So what can you do during Epilepsy Awareness Month, instead of ignore it like I usually do? Check out: https://www.epilepsy.com/make-difference/public-awareness/national-epilepsy-awareness-month There's basic information on what a seizure looks like and how to respond if someone has a seizure. That basic information can be critically important, yet it's truly easy steps. 

Mickey Mouse

 Apparently, Teddy's ambition in life is to be Mickey Mouse. A couple weeks ago, I found his Mickey ears lying on his floor. I thought it was odd, perhaps Dave and him had played with them, and put them back up on his shelf. They stay up there since they're a lovely embroidered pair from his running buddy that would be trashed if Teddy had his way with them for any amount of time.

Then, about a week later, I was trying to juggle work calls, AJ's school, housework and keep Teddy out of trouble. Let's just say that after Teddy thought we should turn the kitchen into a water park that I determined he needed a bit of a time out. I put him in his room to finish the dishes and decided I'd tackle a bit of school with AJ afterward when Teddy was quietly playing in his room. As AJ and I were reviewing his assignment, a clatter arose from Teddy's room. I flew in there, swear words perhaps a bit uncensored, to discover him standing on top of his 4-foot tall dresser holding onto his shelf that he had just ripped out of the wall ... right next to the shelf with the Mickey ears.

AJ helped me clean up the immediate mess since Teddy had disassembled a tractor figurine, and I had a shelf holding on barely with two screws. That incident made it clear that Teddy could scale his dresser, but we were perplexed how it happened because his dresser is out of view from his camera. I presumed he was hooking his leg on his window ledge to boost himself up, similar to how he scales the back of the Tahoe using the rear windshield wiper. (It's a miracle that hasn't broken yet.)

We determined we needed to figure out how to reconfigure his room because the dresser is important not only to hold his clothes but also to keep the wires to the camera and night light secure from his grasp. But before we could figure that out, I found him with Mickey ears on his floor again. Dave adjusted his camera, so the dresser was in full view. And a few days later, Dave saw him in the early morning hours amble to his dresser and do this:

I still can't believe he was using the tiny handles, that stick out less than an inch, to scale his dresser. That kid needs to try rock climbing when he's safely hooked into a harness. I bet he'd have a blast.

And Dave created a wooden box that is secured to his dresser, preventing him from getting a solid grip on the top ... at least for another year or two. In the one day that box didn't have a top on it, Teddy filled it with every toy in his room and was playing with an empty toy tote when I went in his room.

Never a dull moment with him. Ever.

It's Tough to Be Teddy's Mom

 Last week I ended up in tears one night. I'm sure it was a combination of stress from work, COVID and everything else in life. When I looked around our house, all I saw was the disaster of toys that is constant, unless I pick them up once Teddy goes to sleep. (And by toys, I also mean the random fork or bowl that he runs out of the kitchen holding and then deposits wherever he loses interest. And shoes all over the house.) When Dave asked me what was wrong, my answer was simply, "It's hard to be Teddy's mom sometimes." 

In many ways, Teddy is a toddler in a very tall and strong 7-year-old body. When he doesn't want to do something, it's challenging at best to redirect him. I can't easily physically redirect him like I could when he was younger, so we better stop our battles of wills before he becomes any stronger. When he wants something, it's harder and harder to keep him from it. We can only lock and childproof so many things, especially now that he's getting tall enough to reach our top cabinets. Any parent of a toddler knows that it's only a phase. The terrible 2s will pass, although any parent will tell you that 3 is worse than 2. There's no comfort when you live in a perpetual toddler stage with no end in sight ... at least not for the things that wear me down.

Don't forget that he has the coordination of a drunk monkey or a newborn giraffe. That wall there? Didn't see it and ran into it. The little flute in my mouth? Impaled that on the roof of my mouth when I fell on my bed. The stairs? Tumbled down them while mom watched but couldn't do anything because she was out of reach. Without the ability to tell us what hurts, beyond crying, it's tough to know whether he's injured. When you throw in the incredibly high pain tolerance (as in no tears for a full flight of stairs tumble), it's really tough.

Let's not forget the constant worry that Teddy will become ill, develop a fever and have seizures. After a few ambulance rides and an ICU stay, that's a constant worry. It increases every winter with flu season, and it's fair to say that living during a pandemic is not without it's fears. Even once a safe vaccine is developed, it still will be a concern, just as the flu is, because no vaccine is fully effective. We'll have to rely on those around Teddy to help protect him from himself because he clearly isn't capable of that (as I'm pretty sure one ambulance ride was caused by licking the plane seats on vacation to Disney). 

And I can't even start on all the things I fear he'll never do, like tell me I love you, speak, and all those "big" dreams we parents dream for our children.

When I start to spiral down these chain of thoughts, Dave's response comes to mind. "It's not easy to be anyone in Teddy's life." It's certainly not easy to be AJ, to be Teddy's brother. It's not easy to be Teddy's grandparents because they too have similar hopes for their grandchildren (and let's face it, their children as well). To see the struggles, to worry for all of us, is a part of their role as grandparents to Teddy. It's not easy for his cousins, with the chorus of "No, Teddy" or "No Teddy's allowed" as Teddy unknowingly destroys their creations or games. (And it's not easy for me as a mom to hear those refrains, even though I understand why they're said.) 

This imp pushes the limits and then rewrites them.

No, it's not easy to be in Teddy's world, at least not if you have a substantial role. But it is rewarding. He's learned to give the best hugs, not because he squeezes you tight and makes you feel like everything is all right. Rather, his version of a hug is most often going close enough to you that you can hug him, as though he's royalty allowing us peasants to be in his presence. When he's excited to see you, which could be anything from walking into a room unexpectedly to not seeing you in a longer period of time, his face lights up like Christmas day with genuine joy to see you. Teddy also redefines friendship and acceptance. It doesn't matter who you are, as long as you appear kind and smile, you are a friend. He smiles at so many people and reminds you how you can brighten a day with the power of a genuine smile. When something is fun or funny, he wants you to be a part of it to share in the wonder and pleasure. There is so much joy in such simple things in Teddy's world.  When he's finally sleeping, you can lay by him on those days that it's tough to be Teddy's mom and simply be with no judgement and pure love. 

This Kid ...

This child is going to be the cause of any and all gray hairs on my head. He is constantly in motion, moving from one thing to the next like the ball inside a pinball machine. (On a related note, one Halloween costume ideas was to make him a pinball and Dave and I the little flappers that whack the ball back into play.) It's no exaggeration that while you attempt to clean up one mess that he created that he's busy creating the next one ... or two or three. Some days there's victory when we manage to fix something he broke or re-engineer something to keep him safe, but it's almost a guarantee that something else is broken that day or needs re-engineering.

Thankfully, most days it's just things. This evening he toppled all the way down the stairs, and I'm not quite sure how because I only heard it rather than seeing it. He laid at the bottom for a moment, dazed, and then sat up, stood up and was off to see what was next. No tears at all.

He's resilient and determined. I thought I was stubborn, and I am. I'm just not sure that my stubbornness is a match for his. When he sets his mind on something, or determines that he's a comedian and that it's hysterical to climb something, there's no stopping him unless gravity wins (or occasionally I think his guardian angel gently trips him to let me catch up). 

Trust me, he was trying to climb higher still.

There's also no stopping his love for his brother. He adores AJ, and we're so blessed that Teddy has AJ for a brother. Teddy mimics AJ, for better or worse, and wants to be doing what he's doing. If AJ is reading in the car, Teddy needs to read a book. If AJ is writing, then Teddy needs a pencil and paper, too. Let's be honest, the book he was just reading will suffice as paper. 

Teddy loves to lay where AJ is to read and tonight copied his pose.

I'm not sure where else this is going, other than there are times that Teddy drives me absolutely crazy and exhausts my last bit of patience ... like when I'm wrestling him off his beloved tractor or trying to convince him to get up from a flop and drop. But then he looks at you with his impish smile and unaltered love and wiggles his way back into good graces. 

Brotherly love at its best.