A Joy Beyond Words

 

Happy Birthday AJ!

When Teddy was born and AJ first met him, AJ's first comment was, "Uh-oh!" He couldn't have been more right in his prediction about Teddy, but Teddy couldn't have been blessed with a better big brother than AJ.

AJ has always been a helper, even when he was 2 years old and Teddy was a newborn. I'll be honest, his helping skills have greatly improved through the years from the time he "helped" by pulling Teddy off the chair onto the floor because Teddy woke up from his nap ... at 4 months old. Well, that explained the thud I heard.

Now AJ helps by taking Teddy for ranger rides at the land, watching him for short periods while I'm otherwise busy in the house and playing with him as brothers do. He continues to talk about how he'll take Teddy on ice cream runs when he gets his driver license.

AJ is a super big brother!

This kid endures (yes, that's the right word) more than most do. Although most siblings bicker and fight, Teddy constantly gets into AJ's business, occasionally breaks his things and physically pushes, shoves and sits on AJ when he gets in his moods. Yet that doesn't change AJ's love of his brother - or his desire to raise awareness of PIGN-CDG - or his desire to fundraise to explore treatment options. 

AJ's a super special kid with a huge heart. Happy birthday dude!

Happy birthday dude!

Respite - For Fun and Necessity

Respite. According to Oxford Languages, respite is, "a short period of rest or relief from something difficult or unpleasant." I guess parenting Teddy counts as something difficult, at least a portion of most days, so we do have respite built into our care plan for Teddy.

Respite is intended to give us a break from being the primary caregivers for Teddy. In an ideal world, we'd use our respite time to do amazing things together as a couple or with AJ to give him some dedicated attention. (So ideally we'd use respite to go to Pictured Rocks ... that's an ideal use.)

The reality of life is messy, though, which means respite isn't always used because we simply can't coordinate or juggle the hours with a provider. Or in the first years of COVID, we went nowhere and did nothing, so there was no place to go. 

Although I'd love to use respite for date nights and fun adventures with AJ, sometimes it simply allows us to do the things that other families can do. The other weekend we used a bit of time while Sigrid occupied Teddy, so that I could catch up with an old friend from Spain while Dave fished. Simple things that wouldn't require respite for most families, but it's impossible to have an in-depth conversation while supervising Teddy. 

This past weekend, we used a couple hours of respite to go to church (and not even our own church, although I've thought about that and probably should do that). Our goddaughter was being baptized. My friend assured me Teddy was welcome, yet I knew we'd spend the entire time literally wrestling him and make quite the spectacle of ourselves. When I saw the giant cattle watering tub for the baptisms, I was convinced we made the right call. I can guarantee you Teddy would have baptized himself several times over before the service was over (or possibly even started).

So while it's not the most glamourous use of respite time, it allowed us to be present in those moments. That makes it worthwhile. And, yes, church with Teddy is both difficult and unpleasant, so it does fit the definition of respite. 

A Boy and His Bus

It's no secret that Teddy loves buses. I've written multiple times about his bus ride adventures, from city buses to big, yellow buses for field trips. But he also had an incredibly special bus encounter that I want to share.

Teddy's former bus driver has made it into blog posts multiple times, including the aptly named Best Bus Driver Ever post. Through the 2.5 years she drove Teddy, we developed a friendship. She fell in love with Teddy's giggles and infectious smile, and we so appreciated her care and love for Teddy. We never worried when Teddy was with Ms. Lori. We loved the updates she sent us and always tried to make sure she knew how special she was to our family (and not just because she took Teddy away from the house for several hours each day). 

When COVID struck, Ms. Lori got her CDL to drive big buses (as she always transported Teddy in a mini-van) with us rooting for her. She transferred to a different city's routes, which wasn't too traumatic for us because Teddy wasn't being bussed due to COVID and our weird hybrid schooling situation. (Trust me, it made this school year harder when he went back to school finally.)

We stayed in touch, though, meeting for walks, masked visits in the early days and plenty of treats door dropped to brighten each other's days. I have often told her that Teddy's dream would simply be to have a bus of his own.

And this summer, she made that dream come true for an afternoon. 

Ms. Lori worked her magic to borrow a bus and showed up in our driveway this summer. Teddy was bouncing up and down and couldn't even stop to say hi as he bounced onto the bus. He spent the next hour living his dream, making all of us (AJ, Sigrid our sitter, Ms. Lori and I sit where he wanted us on his bus, buckle in and take turns driving. 

Teddy ran a tight ship, though, and made us follow his rules. His rules included the door could not remain open, even though it was almost 90 degrees. Every time anyone opened the door, he had to scoot to the front to shut it. Thankfully he at least let us open all the windows. 

These two adore each other. :-)

It was such a simple thing, although it required some effort on Ms. Lori's part to make it happen. Her gift of time and effort was the highlight of Teddy's week and was a special day that we all will remember for years to come.

Can't you just feel his joy!?!?

These gifts, ones of time, energy and presence, are the ones that truly make all the difference in the world.

Thank you again Ms. Lori!

Back to School: Post-COVID (Even Though It's Still a Thing) Integration

We’re officially into the second week of school. This is the sweet spot, past the anxiety and work that goes into preparing for a school year, where I can actually enjoy the peacefulness that happens at 7 a.m. when both kids are on the bus.

Every parent knows that back to school involves shopping for new clothes, school supplies and perhaps emptying out last year’s backpack that you reminded your child to empty 3 times back in June. Wait, is that just me?

But as Teddy’s mom, there’s some extra work that goes into preparing for school. Off the top of my head, these are some of the things that I had to cross off to make it to this point:

1. Call the special education office back in June to make bussing arrangements. This was above and beyond the simple form for bussing that’s required for all students because apparently they can’t ask all the right questions to eliminate the need for extra work.
2. Complete a seizure plan. It’s the same plan as every year, but I need to write out the instructions every year.
3. Review the associated paperwork for the seizure plan.
4. Complete 3 separate medication forms that must then be signed off by his doctor’s office.
5. Make sure all those medications are properly packaged and not expired. (Whoops, I sent an expired bottle of Ibuprofen and had to redo that step.)
6. Resign the medication form that went missing between the doctor’s office and the school nurse’s office.
7. Call the bus office at least twice to confirm that his pickup time is accurate, he has the right supports on the bus and verify the supposedly 1.5-hour bus ride home.
8. Call the special education office after the e-mail that special education students need to work through that office for any bussing question. Still learn nothing beyond what is in the system.
9. Write a letter to his bus driver to help them understand Teddy since they know nothing about him yet are responsible for him almost 2 hours a day.
10. Coordinate with his teacher to get his therapy services resumed. This means we need an IEP meeting.
11. Facilitate communication between outpatient therapy and school therapists to update them on progress and potential goals.
12. Meet with the new speech therapist to give her an overview of Teddy, so she can assess him and develop IEP goals.
13. Pack traditional school supplies like notebooks, markers and headphones, along with a supply of diapers, wipes and extra clothes. (I’m just now worrying and wondering if I actually packed the extra clothes …)
14. Do Get to Know You Conferences with not 1, but 2 teachers to make sure we’re on the same page. Emphasize multiple times the safety plan for him that will keep him from eloping … again.
15. Worry. Pray. Worry some more. Hope for the best.

And the transition this year was actually remarkably easy in many ways because his primary teacher has been the same since 1^st grade and his classroom teacher is none other than our beloved babysitter. (Thank you so much, Sigrid, for advocating to have Teddy in your classroom! This makes the transition so much easier because we’re not educating someone new all about Teddy in 15 minutes.) The bussing was the only real unknown component, and that came with the excitement of riding a real bus for the first time since kindergarten. Let’s just say that he’s so excited to get on the bus each day that it involves jumping for joy and then literally running onto the bus.

One of Teddy's real-life angels. She checked on him and sent me photo evidence.

Now that he’s at school, we get to hear the progress and the positives. All that’s left for me to do is continue to worry and pray because we’ve avoided COVID for 2.5 years. Now we have two kids unmasked in school all day … so every cough will make me cringe and anxious. 

Simple Joys: Bus Rides

 One of Teddy’s favorite things in the whole wide world is busses. (Other favorite things include tractors and water slides.) Earlier this year he won a free bus ride pass, which might seem like an odd prize for a 9-year-old like Teddy, but it was a great opportunity for a fun adventure this summer. His sitter took him to the bus station, and they simply picked a bus to ride for the entire route. He was so excited to actually get to ride the bus. I say that because he’s excited to simply see a bus and watch them at the bus station.

Teddy invited (directed) Sigrid where to sit.

They rode the entire route, and then they switched buses for another loop. Although Teddy is usually a constant bundle of energy and motion, he was content to stay in his seat the entire ride. He did check out other seats when the bus stopped, but he always went back to “his” seat for the ride.

They both had a great time exploring together!

It was such a simple, fun adventure that he got a bus pass for his birthday. His grandma has already taken him on several rides, and he is just as excited each time. He doesn’t need a destination, just to ride a bus.

Teddy was in his happy place.