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!
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.
Tuesday was Twin Day, so James and his nurse wore similar shirts.
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:
Thursday was “80s/90s Day”. James channeled his inner Axel Rose:
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?
Here he is at the pep rally with a couple of cheerleaders:
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.
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.
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.
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.
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:
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.
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.
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:
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:
About a month ago my mom and stepdad’s retirement community had a nice little fall festival that we went to.
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.
