A Break Due to Heartbreak

It's been months since I've posted because life this fall has been hard on so many levels. 

The last post I wrote was about the start of middle school. Our boys started middle school with me (their mom) pretty darn useless in doing anything beyond caring for myself due to a double mastectomy. Thankfully those surgeries (because of course there were complications that required surgery again the next day) were the extent of my treatment for two microinvasions of breast cancer. 

So the end of August and all of September were spent recovering from surgery and adjusting to middle school. Just as I was getting back to normal activities, my mom was hospitalized due to lung issues (while dealing with her own diagnosis of small cell lung cancer since this spring). That turned into spending the entire month of October in the hospital before passing away the end of October. 

That meant my boys had a pretty useless mom from mid-August through mid-November when I finally returned back to our home. Not an easy start to middle school for Teddy, but he's adjusted remarkably well and loves school. (We had a rough couple weeks while tapering off a med that we trialed for behaviors, specifically aggression toward his brother. It was so nice when I returned home to have our Teddy back with all his happiness, joy, energy and at least his normal not-perfect sleep versus insomnia.)

And we're still grieving. This loss is so hard because my mom was such a huge part of our lives. 

She was AJ's touchstone, one of his go-to people when he was sad, happy or simply needed some attention. She learned to play Minecraft to play with him. She encouraged him with sewing and every other hobby he wanted to pursue and did so many fun things with him. She was his top salesperson in selling fidgets and dragons to fundraise for CDG research. The one regret she had, and AJ has as well, was that they didn't get to do the hot air balloon ride they had planned this fall due to weather cancellations. 

She was always willing to watch Teddy, even as it got to be physically too much for her. She would take him for overnights, even if it meant she slept on the floor because he fell asleep in the living room, and she couldn't carry him upstairs. She always said yes to watching him and did all the fun things with him, which are things that aren't fun for anyone but Teddy. She loved and embraced him fully for who he was, celebrated every accomplishment and was so darn proud of him for simply being Teddy. 

She was here at least once a month, helping me prepare for farmers' markets and spending time with me packaging and selling. She was always willing to help, to spend the time here and to give of herself. The drive here was worth it to make our lives easier. She encouraged Dave and I to take time for ourselves, helping to watch the boys when we did our solo trip to the Virgin Islands (now almost 10 years ago), letting us volunteer together for SkillsUSA and taking AJ on long weekends backpacking. 

There's such a hole in our hearts, and life has been hard to pick up the pieces. So while there's much to update, I'm giving myself grace in these posts and will update here when I can. 

Right on Track

We've reached the end of the first week of middle school, and we're right on track. 

Quite literally, actually. 

We spent several months this summer working with our local school district regarding Teddy's use of a GPS tracker at school. We had to navigate privacy and security concerns (for other students) as well as district policies. We worked with his tracking device company's school liaison educators to ensure our district understands the capabilities of his tracker and why it's best for Teddy. 

It took until an IEP a week before school started, but we reached consensus on how to best support Teddy. We're really happy with the solution as we feel it's best for Teddy to ensure his safety. It's also, hopefully, an opportunity to work toward changing district policy to allow other families to use similar devices.

At any rate, it allows us to know exactly where Teddy is, ensure he makes it to school, to his after-school program and track him should he elope from school ... not that he's ever done that before ... oh wait ... that's a good story.

Gosh, I love these two goofs!

While he does have his older brother at school to advocate and look out for him, AJ has yet to see Teddy at school because their paths don't cross. But several of AJ's friends have said hi to Teddy in the halls, and he has gym with one of the neighbor girls, which he thinks is the coolest thing. (He doesn't care that she's a mature 8th grader, and he's only a 6th grader ... he'll still hang with her.)

Middle School - Here We Come!

I don't know how I have 2 middle schoolers. 

But I do.

And they're at the same school for the first time in 8 years.

The last time AJ and Teddy went to the same school, it was for 3K and 4K. I remember that day so clearly, thanks in part to Facebook memories where we sang about how the Mamas in the Tahoe were so excited for a break with her boys at school for a few hours. I also remember AJ singing because he was so excited to go to 4K. 

Be still my heart! This was when Teddy could barely walk.

And when they went to school together, when they were sweet little 3- and 4-year-old boys, AJ loved every time he saw Teddy riding around school in the wagon, proudly waving and telling his classmates that was his brother Teddy.

Now AJ is a 7th grader, and Teddy is a 6th grader. Ironically, they're both at the same school where they started their educational journeys (as this is both an elementary and middle school). AJ is super excited to have Teddy at his school because he loves his brother ... but he's also worried about bullying and the lack of his extra time in the morning with Dave or me. 

It's a bit terrifying since it's a new school, new teacher (after the same one for 5 years!) and almost all new support staff, aides and other teachers. (He does have the same speech therapist as last year, thankfully, and does have the same nurse from 3K all those years ago, along with same PT from all those years ago when he was a floppy baby boy.) The most terrifying is that it's all brand new kids, with none of his friends who've grown to know and love him the last 6 years. Not a single one will be at his new school because Teddy was not at our home school, meaning all his classmates are going to a different school and now Teddy is coming to our home school for middle school.

But I'm so excited for the opportunities in middle school for Teddy! To highlight a few:

1. He's at the same school as AJ, for better or worse. I love that AJ will look out for him, as will our neighbor girls and hopefully AJ's friends. 
2. Teddy is a social butterfly. He'll make friends incredibly fast and will quickly endear his teachers, paras and make himself known to all the adults in the school.
3. Teddy gets support to attend gym with a whole bunch of his peers, modified with the support of his adapted PE teachers. I think he'll love that overall.
4. Teen life aka home ec. is a modified class for Teddy and a handful of his peers. He is going to absolutely love even the laundry aspect but especially the kitchen skills. This teacher also is amazing (AJ loved her class!) and does a coffee cart with Ted's class. I can only imagine how excited he will be to participate in this learning opportunity. 
5. Band is one of Teddy's classes. We had to select band, choir or orchestra as one is required for all 6th graders. I said I wouldn't trust him anywhere near the string instruments, so that ruled out orchestra, and he's non-verbal, which meant choir wasn't a great fit. So band it is! AJ also does band and loves it and the teacher! So it'll be really interesting for the poor teacher to have a great student like AJ and then Teddy. His para will get a workout in band, no doubt, but I think he'll love all the music and be so proud to participate with his peers.

Those are a few of thing things we're looking forward to with middle school. There's been so many developments here (last-minute IEP, acceptance into an afterschool program and some pretty major health issues I've been navigating), so I'll work on those updates another time. 

For now, we get a good night's sleep because we have 2 middle schoolers tomorrow!

They've gotten a bit bigger in the past 8 years.

A Hiking We Will Go!

Ya'll, life does not slow down. It's about to get extra crazy here, so I wanted to share a quick update since we got our Huckleberry adaptive hiking cart. 

If you've followed our journey for a while, you've seen me post multiple times about hiking because it's a key part of our vacations and our life. While we don't get to hike as much as we'd like with kids (and Teddy in particular), hiking has allowed us to explore so many incredible things. You can read out our hiking adventures ... at least some of them ... here. And you can read the bittersweet end to hiking while carrying Teddy here. 

We truly thought that was the end of our hiking journey with Teddy, unless we could take his adaptive chair on a particular trail. Then we discovered the Huckleberry available for pre-order this spring and ordered one within a week! (A huge thank you to our generous family member who helped sponsor Teddy's Huckleberry!) 

Teddy's Huckleberry arrived in the last couple weeks, and we've taken it for spins around the yard and two actual hikes. It was definitely a learning curve for all of us, as Teddy was pretty skittish and uncertain about riding in it at first, but he's now more than willing to clamber on for a ride. 

Amazing friends help pull (and stabilize) your child!

Yesterday two of my amazing friends joined me for a hike with Teddy, and we had a great time. I'm thankful for strong friends to lend helping hands who love Teddy and have a sense of adventure because we certainly needed it for part of the trail as you can see in the video.

We're looking forward to many more hikes and adventures with this!

A beautiful scenic overlook (up the side of a Wisconsin mountain).

Happy Birthday Buddy!

How is it possible that my little guy is 11?!? 

He's not so little any more ...

Teddy's birthday is often a mix of emotions:

• Gratitude to have another year with Teddy. When we got his diagnosis at 2.5 years old, we read the life expectancy was 3 years old. Given that there are only about 100 known cases of PIGN-CDG in the world, we know far too many families who've buried their children from this diagnosis. Yet Teddy and others continue to thrive and write their own stories.  
• Sadness that comes with comparison. In the words of Teddy's namesake, "Comparison is the thief of joy." Some years it's easy to get lost in the rabbit hole of what Teddy can't do compared to others his age. It's especially easy when shopping for gifts is hard.
• Happiness of the celebration with family and friends. The best thing for Teddy isn't presents, but rather the presence of his favorite people.

This year was extra chaotic because I had a farmer's market the morning of his birthday, so this year didn't come with quite so many emotions. I lived in the land of happiness and gratitude, loving seeing him so happy as he spent his afternoon and evening with his favorite people.

Birthday buddies - Teddy & Collin got to celebrate their birthdays together last week.

We invited family, neighbors and friends, and so many of them made an appearance (whether that was for Teddy or the pulled pork is debatable). I snuck him away for a quick visit for his sitter's graduation party, and he was overwhelmed when we returned home because so many of his favorites were here that he couldn't decide who to play with first! 

We're so blessed to have Teddy as our son and blessed beyond measure to have the community that surrounds and loves on him!

Summer Sickness

 It's weird how things work out sometimes. 

On the Wednesday before July 4th, I was a bit concerned dropping Teddy off at therapy because I was afraid he was coming down with pink eye. He had been rubbing his eye for 20 minutes, clearly in pain, before leaving for therapy. But it seemed to be an eyelash in his eye and then a pair of styes, so I felt it was OK to drop him at therapy.

When his sitter picked him up from therapy, he was definitely not acting like himself, just moping around, trying to take off his shorts and diapers and pointing to his waist. (On the bright side, the eye issue was resolved.) Since he's not verbal, it's really tough to tell what's going on. I was working from home, so I could check his temp and check him out.

He seemed OK from a symptom standpoint that I could find, but something was clearly bugging him. After about 2 hours from when he started acting weird, the mystery was solved when he threw up. Ugh. He threw up twice, which confirmed my gut feeling that we should take him into the clinic.

We had a bit of a poop issue, and then all of the sudden he started scratching. The poor kiddo just turned bright red from head to toe with viral hives. No break for him!

So a quick trip to the walk-in revealed not just the obvious stomach bug, but also a nasty ear infection and then viral hives to boot. Poor kiddo had a 3 for 1 special. But, without the stomach bug (which probably prompted the viral hives), we wouldn't have known about the ear infection to treat that. So in a weird way, it all worked out ...

After a night of medicine (anti-nausea that didn't fully work as he puked up all his medicines, prompting a call to his neurologist on call to sort that out), a long oatmeal bath and some sleep, he woke up feeling much better with the stomach bug thankfully over, along with the nasty hives. 

It wasn't quite the 4th we had planned, but we did manage to get to our land to play in the mud. At least that was Teddy's plan.

Just a bit of mud.

Teddy goes to Camp

Yep, you read that correctly. And if you've ever watched the movie Ernest Goes to Camp, I'm pretty sure there were just as many adventures, just different kinds. We can only imagine how the week went exactly because we dropped him off Sunday afternoon ... heard nothing all week ... and picked him up this morning. 

No news is good news when your child is at camp, though it leaves quite a bit to the imagination. But we felt as comfortable as possible in leaving our non-speaking, adventurous, thrill-seeking child who likes to test boundaries and explore without limitations who takes a whole regimen of medications (mostly for seizures and sleep challenges) could be. 

Seriously, this camp through Easter Seals is specifically designed for campers (both kids and adults) with disabilities to enjoy a full camp experience tailored to their needs. The application for camp was incredibly thorough, and then there were countless forms to complete after he was accepted to camp. We even had to do temp checks the week prior to camp in an effort to prevent any illnesses from coming into camp. 

Upon arrival, we were greeted by a flurry of smiling staff and had the 3 counselors assigned to Teddy come greet us and walk us through the check-in process. (He wasn't staffed 3:1, but he got their full attention until another one of their campers arrived. There were 3 counselors assigned to Teddy and 2 other boys, so he had plenty of support and supervision.) Check in included another temp check and quick medical screening, meeting with counselors, spending time with an on-site nurse to review his medications and medical needs one more time and then finally hauling his gear to his cabin. Oh, and I signed a waiver to allow him to do a ropes course ... just in case. (Turns out he just wanted to watch the others and didn't want to join in the fun.)

Teddy was teaching his counselor how to play piano during check in.

And because we weren't sure what to expect, we brought all the gear. Loads of diapers (apparently 2 more packages than needed), extra clothes, his chair in case they needed to travel long distances or go for late-night walks to calm down for bed and 2 bean bags just in case they were needed as landing pads for his bed. We were told upon arrival that they could place his mattress on the floor as well. We lost one of his crocs on the way to unload his belongings, but someone found it before we left, so all was well.

(Fun fact: When we picked him up today, he was missing 2 chewy necklaces and a chewy toy. But he inherited a fake plastic mustache (weird!), a pair of shorts 2 sizes 2 small and a pair of socks. I can only imagine trying to keep everything straight when the campers can't do it themselves or voice whose belongings are theirs, even with everything labeled! Heck, I know what it's like with lost and found at a traditional camp!)

Before we left, the camp director came to us and said, "I know I've only known Teddy 10 minutes, but I already love him! He's so much fun!" And then she proceeded to show us a selfie of them. We heard pretty much the same report when we picked him up today, hearing about his smiles, giggles and his ticklish nature. 

While it was weird to have Teddy at camp, we tried to make the most of it with a few meals out, a couple nights camping, some hiking and biking, a waterpark visit and time at our land relaxing, reading and working on projects. AJ commented on how weird we were (especially me), but I told him this was simply us less stressed. It was such a wonderful week for us with memories made. 

We hiked to Devil's Door at Devil's Lake, definitely not a Teddy-friendly hike!

As for Teddy, we won't know the full extent of his adventures. But I know he had so much fun and was so tired from his adventures each day that sleep wasn't an issue! He got to go swimming, play on playgrounds, eat s'mores, dance party fun and field trips that included tractor/wagon rides. His counselor said he had a great week, and the camp director showed us a bike that he commandeered (that she has no clue how it got on camp grounds) and had a blast riding. 

We're all so glad for this experience and looking forward to next year! (Even if it was a really rough return home because he's extra tired, and we're all feeling all the emotions of coming back from camp ... it's just so much fun it's hard to leave and adjust to real life again.)