Losing Track of the Days

  • Post category:Holidays / School
  • Reading time:10 mins read

Do you ever get so busy with life that you lose track of the days? You find yourself going through the same routine day after day, and one day just rolls into the next. You finally find a moment to stop and catch your breath, and you realize that what seemed like just a week or two was actually more than a month!

That’s what life has been like around here. Stacy and I both work seven days a week. We don’t take weekends or holidays off. That’s the unfortunate reality of raising a kid with complex medical needs. I work a full-time job Monday through Friday and am on-call 24/7/365. Fortunately, it doesn’t happen very often, but I do occasionally get calls at 1 or 2 am because something broke.  And then there are times when I need to go in at 3:00 am to do upgrades and updates while most people are asleep. That’s the life of a network engineer at a small private university.

On a normal day I get home from work between 5:30 and 6:00 pm and put on my caregiver hat. Stacy heads out to work for a couple of hours and I’m on “James duty”. Most nights he’s fine and just needs his meds and an occasional suctioning. Now that the weather is getting cooler and we’re heading into “pneumonia season” as we call it, he tends to need more suctioning and sometimes a boost of oxygen to keep his sats up.

Stacy’s time is consumed by being the primary caregiver to James and as a scheduling coordinator and dog walker for a local dog walking company. On school days, she’s up at 4:30 am to get James ready for school. It’s not as simple as getting him up, dressed, fed, and out the door. She has to change his diaper, get him dressed, start his percussion vest treatment while she gets his food and meds ready, starts his food, gives him his morning dose of meds, and a nebulizer treatment. She usually tries to squeeze in a thirty-minute nap while he eats. Once the bus picks him up at 7:05 am, she switches to dog mode until he gets home around 3:00, then back to caregiver until I get home from work.

On weekends there’s a frequent changing of hats. Stacy is often in and out with dog walks, grocery shopping, or running errands. I’ve got the caregiver hat on while she’s out. When she’s home, she puts on the caregiver hat, and I can work in the yard or do other projects around the house.

As you may have guessed, Stacy and I don’t have much time for each other, but we make it work. We have to. We don’t have much of a choice. We didn’t choose to have a medically complicated child. That choice was made for us, and we’re doing the best we can to care for James and remain financially solvent. And I don’t think I need to tell you how tough that has been these past few years with inflation being as high as it is. In addition to everything costing more, our property taxes went up 30% this year, too. In order to avoid a future shortage in our escrow account, our mortgage payments have gone up. And now we’re in the process of buying a new van.

Yes, you read that right. If you’ve been following this blog or following James on Facebook, you know that we’ve been talking about buying a new van for a while. We’re finally going for it! Our Caravan is ten years old, has almost 100,000 miles on it, and is making us nervous. We’ve put quite a bit of money into it in the past few years and it’s time to find something more reliable. I won’t share too many details yet, but I will share a teaser pic. It is slightly larger than our Caravan, so I drove it home to be sure it fits in the garage…and it does!

 

Two minivans are parked side by side in a residential driveway in front of a two‑car garage. The van on the left is a gray Toyota Sienna, and the one on the right is a red Dodge Grand Caravan. Both vehicles have wheelchair‑accessible conversion branding. The garage is open, showing shelves, tools, and storage items. Trees with early autumn color frame the background, giving the scene a quiet neighborhood feel.
The van we’re in the process of buying (on the left) and our current van (on the right)

 

Once we get the van, I’ll post more details. Thanks to all of you who donated to our van fundraiser. If it wasn’t for you, we would never be able to do this.

 

 

Catching Up with James

Going back to the first sentence of this post–“Do you ever get so busy with life that you lose track of the days”–I’ve totally lost track. It’s been almost seven weeks since my last post. I had been so good at keeping up with monthly post, but time just got away from me. I apologize for the slight delay in getting this post written.

 

Looking at everything that James has done since my last post at the end of September, and it’s A LOT! I was trying to see if I could cut out anything to make this post shorter, but I didn’t think that was right. You’re here because you want to see what James has been up to and how life has been treating him, right?  Well, buckle up because here we go!

 

Homecoming

The week of September 23rd was Homecoming Week at school, and they had one of those theme weeks where each day the kids were supposed to dress up for that day’s theme.

Monday was Sports Day and James went to school in a Cubs shirt.

 

James lies on his cushioned recliner. He wears a blue Chicago Cubs T‑shirt featuring the team’s bear‑inside‑a‑red‑C logo and the phrase “GO CUBS GO” in bold red and white lettering. Around his neck is a plush brown dog‑shaped neck pillow. The background includes a beige carpet, a gray blanket, and part of a patterned cushion with cartoon monkeys, creating a cozy, lived‑in setting.
Sports Day

 

Tuesday was Twin Day, so James and his nurse wore similar shirts.

 

James sits in his wheelchair wearing a yellow‑and‑black plaid shirt layered under a black jacket, along with a patterned neck support and clear protective glasses. His nurse stands beside him in a matching yellow plaid shirt, smiling warmly. They are in a classroom with cabinets, curtains, tables, and other people in the background, creating a friendly, active atmosphere.
Twin Day

 

Wednesday was “Dress Like an Infant or Toddler”. Really?! I was picturing a bunch of high school kids walking down the hallways wearing diapers over their regular clothes. James does wear a diaper, but we weren’t going to send him to school showing it off. Instead, Stacy found him a cute shirt to wear:

 

James lies on on his cushioned recliner wearing a green shirt with playful lettering that reads “Cutest Clover in the Patch,” accented by two small clover graphics. A plush dog‑themed neck pillow rests across his shoulders. The background includes bedding with a monkey pattern and a carpeted floor, creating a soft, relaxed setting.
Dress Like an Infant or Toddler Day

 

Thursday was “80s/90s Day”. James channeled his inner Axel Rose:

 

James sits in his wheelchair wearing a red bandana, dark sunglasses, a red jacket, and a black Guns N’ Roses T‑shirt. His jeans have patches on the knees, and the wheelchair’s red frame components and controls are visible. He’s indoors on carpeted flooring near a wooden cabinet and a small table, giving the scene a cozy home setting with a strong, expressive rock‑themed look.
80s or 90s Day

 

On Friday they had a Pep Rally, and even though he wasn’t going to the Homecoming game or dance, we bought him a shirt. The collage below is the front and back of the shirt. I have no idea why the shirt looks like a different color on the back. It’s the same neon orange on both sides. Note that the ’27 on the front of his shirt is the year he would graduate if he was a ‘regular student’. The state of Illinois passed a bill in in 2021 which allows “special education students to continue attending school through the end of the school year in which they turn 22, rather than leave school the day they turn 22.” That means he will actually be the class of ’32. That sounds weird, doesn’t it?

 

The left side of the image shows James lying on on his cushioned recliner wearing a bright orange T‑shirt with “’27” printed in bold black text on the front. A plush dog neck pillow rests around his shoulders. The right side shows the back of the same orange T‑shirt laid flat, printed with black text and simple illustrations referencing cities and landmarks — including a pagoda, a flower, Christ the Redeemer, a Greek column, and the Eiffel Tower — along with the phrase “hoco ’24.” The overall design has an international, travel‑themed homecoming style.
Homecoming shirt

 

Here he is at the pep rally with a couple of cheerleaders:

 

Three students sit in wheelchairs on a gym floor, positioned in front of two cheerleaders standing behind them. The cheerleaders wear maroon‑and‑gold SHS uniforms with pink and blue bows in their hair. The background shows red and yellow bleachers, giving the scene a lively school‑gym atmosphere. The group appears to be participating in a supportive, inclusive school event that brings students of different abilities together.
At the Homecoming pep rally

 

 

Special Education Recreation Center

In the spring James’ class went on a field trip to a special education recreation center where he went on a boat for the first time—which Stacy and I were not happy about—and learned archery. They took another field trip to that recreation center at the end of September. I don’t have any pictures to share, but they did take a video of him doing archery.

 

 

 

Pumpkin Farm Trip #1

On October 1st they took a field trip to a pumpkin farm and went through their haunted house.

 

James sits in his wheelchair outdoors at a fall display, covered with a patterned blanket. Beside him stands an adult, both positioned in front of a large decorative sign that reads “Welcome to Goebbert’s,” flanked by two cartoon scarecrow figures. Behind the sign, rows of pumpkins stretch across the ground. Bright sunlight, clear skies, and autumn colors create a festive, family‑friendly pumpkin‑patch atmosphere.
Welcome to Goebbert’s

 

James sits in his wheelchair outdoors, covered with a patterned blanket, with an adult standing behind him. They are positioned in front of a festive autumn display featuring a large silver pumpkin surrounded by hay bales, colorful pumpkins, and tall ornamental grasses. A red barn‑style building is visible in the background with part of a sign reading “Red Apple…” The bright fall decorations and outdoor setting create a cheerful harvest‑season atmosphere.
Is this their version of “The Bean” in Millennium Park?

 

James sits in his wheelchair outdoors at a fall display, covered with a patterned blanket. Beside him is a colorful painted sign featuring a smiling pumpkin perched on a silo, a mug topped with whipped cream labeled “Goebbert’s Farm,” and a donut, along with the phrase “Fall family memories.” Corn stalks, picnic tables, and white tents sit behind the sign under a clear blue sky, creating a bright, festive autumn atmosphere.

 

James sits in his wheelchair in front of a heavily decorated Halloween house. Large spider props cling to the siding and roof, and several skeleton figures are arranged near the entrance — including one wearing a Chicago Cubs shirt and cap, another posed on the porch, and a small skeleton dog on the ground. The house has eerie window decorations and a wooden picket fence along the front, creating a detailed, spooky Halloween scene.
Outside of the haunted house

 

An outdoor wooden archway is decorated with bright autumn leaves in orange, yellow, and red. A sign hangs from the arch reading “Haunted House This Way,” with a blue‑green hand pointing left. Beneath the arch is a wooden fence and a path leading toward a building. In the foreground, James sits in his wheelchair, and another wheelchair user is visible farther up the path. The scene has a festive fall and Halloween atmosphere with clear skies and a busy event setting.
This way to the haunted house

 

 

 

Halloween Store

The following day they went to a Halloween store and were given a list of costumes they had to find. As he was searching for the costumes, he tried on a bunch of masks.

 

A close‑up shows a detailed clown mask with bright orange hair, a large red nose, sharp yellowed teeth, and bold red makeup lines extending from the eyes and mouth. The exaggerated grin and stylized features give it a horror‑themed look. Behind the mask, store shelves display various costumes and accessories, creating a busy Halloween shopping backdrop.
Pennywise

 

James sits in his wheelchair wearing a large Jack Skellington mask covered in silver rhinestones that sparkle under the store lighting. The mask has oversized black eye shapes and small openings near the nose. He wears a dark blue shirt with a white‑and‑black scarf around his neck. Behind him, shelves and displays are filled with costumes and accessories, creating a busy Halloween‑store backdrop.
Nightmare Before Christmas

 

James sits in his wheelchair wearing a large Halloween mask, featuring pale white skin, dark sunken eyes, greenish discoloration on the forehead and cheek, and messy light‑green hair. The exaggerated features give it a distinctive Beetlejuice‑style look. Behind the mask, store shelves are filled with packaged costumes and accessories, creating a busy Halloween shopping backdrop.
Beetlejuice

 

James sits in his wheelchair wearing a bright green mask styled like Donatello from the Teenage Mutant Ninja Turtles, complete with glasses and a purple band across the eyes. He has a striped support around his neck and a blanket with cartoon characters draped over his lap. Behind him, a store aisle is lined with hanging costume packages and accessories, creating a colorful, busy Halloween‑shopping backdrop.
Teenage Mutant Ninja Turtles

 

James sits in his wheelchair wearing a bright red hat with large cartoon eyes, styled like the character Cappy from Super Mario Brothers. James has clear protective glasses, a dark blue shirt, and a black harness with a white‑and‑black striped neck pillow accented with red. Behind him, a store aisle is filled with packaged costumes and accessories hanging on display racks, creating a colorful, busy Halloween‑shopping backdrop.
Cappy (Super Mario Brothers)

 

James sits in his wheelchair wearing a large Luigi mask with a green hat marked with an “L,” bright blue eyes, a rounded nose, and a black mustache. A hand holds the mask’s packaging above his head, showing an image of Luigi and age information. James has a striped neck pillow with small colored accents, and the background is a busy store aisle filled with hanging costume packages and accessories.
Luigi

 

James sits in his wheelchair inside a costume store wearing a large black hat and clear protective glasses. He holds a gold‑colored toy sword in one hand and a red velvet jacket trimmed with gold buttons and detailing in the other, giving the moment a fun, pirate‑themed feel. Behind him, racks and shelves are filled with costumes, wigs, and accessories, creating a busy, colorful shopping backdrop.
Pirate

 

James sits in his wheelchair inside a costume store wearing a shiny gold hat and matching gold shutter‑style sunglasses. He has a colorful bib with cartoon characters and a patterned blanket across his lap. A flexible arm attachment extends from his wheelchair. Behind him, store shelves display a mix of costumes and accessories, including a red dress and a yellow shirt printed with “Average Joe’s Gymnasium,” creating a bright, playful shopping backdrop.
Pimp?

 

James sits in his wheelchair wearing a large blue Sonic the Hedgehog mask with bright green eyes, blue spikes, and a yellow muzzle. A hand in the foreground helps hold the mask in place. He wears a dark shirt and a white‑and‑black striped neck pillow with red accents. Behind him, another shopper browses a busy store aisle filled with colorful costume items, including animal‑themed masks and clothing, creating a lively Halloween‑shopping scene.
Sonic

 

James sits in his wheelchair wearing a large blue furry mask with wide round eyes, a bright red mouth, and sharp white teeth, giving it a bold Huggy‑Wuggy look. A colorful blanket with cartoon patterns is draped across his lap, Behind him, a busy store aisle is filled with hanging costumes and accessories, creating a lively Halloween‑shopping backdrop.
Huggy Wuggy

 

You’ll have to wait until later in this post to see what he dressed up as for Halloween. It did not include any of the masks above.

 

 

Pumpkin Farm Trip #2

On October 10th they took another trip to the pumpkin farm. This time they went on the carousel and fed the animals at their little zoo.

 

Six wheelchair users sit together outdoors in front of a bright farm‑themed backdrop featuring a red barn labeled “Goebbert’s,” a silo topped with a smiling pumpkin, and painted animals including a horse, cow, pig, and chicken. Tall corn stalks rise behind the display, and a large barn building with a metal roof sits further back. The sunny weather and colorful setup create a cheerful, inclusive fall‑festival scene.
Class picture

 

Two people sit close together on a red bench. James is wearing a navy blue shirt, gray sweatpants with white stripes, and blue sunglasses, with a feeding tube connected to a green bag resting next to him. His nurse sits beside him wearing a gray camouflage long‑sleeve shirt, blue jeans, pink Crocs, and sunglasses. The space is bright with large windows and wooden flooring, giving the moment a calm, comfortable feel.
With his nurse on the carousel

 

A wooden façade styled like an old Western saloon stands outdoors, built from vertical planks with two green‑trimmed window openings and a central doorway. Above the entrance, a sign reads “Saloon,” with smaller text above it. Through the doorway, James sits in his wheelchair, centered in the frame. The background includes grass, trees, wagon wheels, and other rustic decorations, creating a playful, Western‑themed fall‑festival scene.
Stopped for a drink at the saloon

 

James sits in his wheelchair wearing a blue hat and a purple neck pillow near a red metal fence inside a covered barn. On the other side of the fence, an adult alpaca and a smaller young alpaca stand on straw‑covered ground. More alpacas and visitors are visible farther back, along with dried corn‑stalk decorations and the translucent roof structure overhead. The scene feels lively and close‑up, capturing a friendly farm‑animal encounter.
At the zoo

 

James sits in his wheelchair outdoors wearing a blue hat, sunglasses, and a dark shirt, with a white cloth draped over his shoulder. Someone beside him adjusts something on the chair. Behind them, two camels rest behind a stone wall. The scene feels calm and accessible, capturing a close‑up moment at an outdoor animal exhibit.
At the zoo

 

Here are a couple of videos of James feeding the animals:

 

 

 

 

Other School Activities

I know that you’re probably asking if all they do in school is go on field trips and if they actually learn anything. Yes, they do more than just go on field trips, and they do learn stuff, but their program is much different than typical high school kids. Whereas most of the normal kids will go onto college, or a trade school, the kids in James’ class probably won’t. I’m not saying that to be mean; it’s just reality.

The kids in James’ class that have enough physical and mental ability will leave high school and go into the workforce. This is not a knock on teachers, but regular academics will not prepare them for that. The program that James is in teaches them more about life skills than academics, although there are some academics mixed in.

They cook and bake in the kitchen that’s in their classroom, which teaches them how to read a recipe, measure out the ingredients, and use a stove and oven safely. They also learn how to sell and count money by selling coffee and other items around the school. In late September it was coffee and scones.

 

Several people gather around a mobile coffee cart in a classroom‑style space with lab counters and cabinets. The cart holds a Keurig machine, coffee pods, disposable cups, creamers, and other supplies. One person stands behind the cart holding a cup, while James and another wheelchair user sit nearby with someone assisting them. A safety‑guidelines poster hangs on the wall, and the scene feels like a hands‑on, inclusive activity focused on coffee preparation and service.
Selling coffee and scones

 

James sits in his wheelchair wearing safety glasses and a maroon apron printed with “Saxon Coffee Cart” and a small coffee‑cup logo. He holds a one‑dollar bill in one hand. Behind him are yellow cabinets, a countertop with cleaning supplies, posters on the wall, and a piano, giving the space a classroom‑or‑workspace feel. The moment captures him participating in a hands‑on coffee‑cart activity.
Counting the money

 

We joked that James needs to get used to working so he can help with the car payments on the van we will hopefully be buying soon.

Outside of school, some of their “field trips” are to stores so that they can learn how to locate items, ask for help locating things they can’t find, and how to pay for the items. Here is James on one of those trips being attacked by gnomes at a dollar store:

 

James sits in his wheelchair wearing a colorful winter hat with neon lettering, clear glasses, and a black‑and‑white striped neck pillow. He’s surrounded by Christmas‑themed plush gnomes in red, green, and patterned hats, some decorated with holly or antlers. Cardboard boxes and gold tinsel sit in the background, giving the scene a cozy, festive indoor feel.
Being attacked by gnomes

 

 

 

Halloween

James’ class did a group Halloween costume…they were a biker gang. I told him that I was a little bit jealous of his tattoo sleeve. I wouldn’t mind getting a sleeve done sometime in my life. Maybe when I hit my midlife crisis…which I think will be coming soon.

 

James sits in his wheelchair wearing a red bandana, clear protective glasses, a black shirt, bright patterned sleeves, and red wrist guards. His chair features red flame‑style decorations and several attachments, including a flexible black arm and visible cables. Other people are in the background, including another wheelchair user, all in a classroom setting with cabinets, shelves, and a whiteboard labeled with class information. The scene feels active and inclusive, capturing a moment of participation in a school environment.
Halloween costume

 

Two people pose together in front of a large trophy display case. James sits in his wheelchair wearing sunglasses, a red bandana, and a black shirt. His nurse stands beside him wearing sunglasses, a black shirt, and a colorful sleeve on one arm. Behind them, the wooden case is filled with trophies and plaques on a red backdrop, labeled with achievements such as IHSA and Sectional Champions, giving the scene a proud, school‑spirit feel.
James and his nurse

 

 

Family Stuff

Are you still with me? I know this has been a long post, but I am almost done. I promise. There are just a couple of things that James did outside of school that I wanted to share.

In early October we had our annual family pictures. Stacy gave James a little trim the week before, so his hair wasn’t so crazy. She left the top long and shortened up the sides.

 

A side‑by‑side collage shows James before and after a haircut. The “before” photo on the left shows him lying on his cushioned recliner with a plush brown dog‑shaped neck pillow resting around his neck, his mouth slightly open and his hair longer. The two “after” photos on the right show him lying on his cushioned recliner with his hair noticeably shorter and freshly trimmed, his mouth open in both images. The set highlights a simple, everyday grooming change.
Hair cut before pictures

 

We just received the final pictures this morning. I’ll try to get them posted here this weekend…unless life gets in the way again. Here’s a little sneak peek collage that the photographer shared on her Facebook page:

 

A collage of family photos features James, his family, and their dog in a mix of color and black‑and‑white images. One photo shows the three of them sitting on the grass with the dog, smiling together. Another is a close‑up of the dog’s face. Two center images show James and a family member lying on a red blanket outdoors, one wearing an orange shirt while the other leans in close. Another photo shows James in his wheelchair on a paved path near tall grass and water. The final image shows the family gathered on the grass again, interacting with the dog. The photographer’s name appears on the collage, tying the set together with a warm, connected feel.
Family pictures sneak peak

 

James’ one-on-one nurse at school was out sick one day in October and since there wasn’t enough time to arrange for a substitute nurse, James had to go to work with mommy. Here he is meeting one of her clients:

 

A four‑photo collage shows James sitting in his wheelchair inside a vehicle, wearing blue sunglasses and covered with a brown plaid blanket. Beside him in each image is a black‑and‑white dog named Rocky, who leans in close, sniffs his hand, or rests near him with gentle attention. The background shows the vehicle’s interior and glimpses of a residential street through the windows. Text on the right side reads “Making New Friends with Rocky,” highlighting the calm, affectionate interaction between James and the dog.
Meeting one of Mommy’s clients

 

About a month ago my mom and stepdad’s retirement community had a nice little fall festival that we went to.

 

James sits outdoors in his wheelchair wearing sunglasses, a hat, and a striped neck support. Behind him is a bright harvest‑themed display made of stacked hay bales decorated with pumpkins, colorful chrysanthemums in red, yellow, and orange, and tall corn stalks. A cheerful scarecrow holds a sign that says “Happy Harvest.” Trees and greenery frame the background, giving the scene a festive autumn feel.
Fall festival

 

And that my friends is all I’ve got. I know, it was a lot, wasn’t it? I’ll try to get back on track and get the next regular monthly post up in about a month. Look for that some time in mid-December. Looking at the calendar, that would be the weekend of December 14th. And keep your eyes open for our family pictures, which I will try to have up this weekend. Thanks for sticking with me through this long post, and thanks again for all of your support in helping us buy a new(er) van. We are blessed.