Christmas, School, and other Shenanigans

  • Post category:Holidays / School
  • Reading time:7 mins read

Well here we are. The end of 2018. The years just really seem to fly by, don’t they? If anyone has figured out how to slow down time, please let me know.

Before I get started with this last post of the year, I wanted to take a moment to say thank you. Thanks for following our story. Thanks for your love and support. Thanks for everything you have done for us—big or small—over the past year. As you know it hasn’t been an easy journey, and many times we don’t know what lies around the next bend, but knowing that there are so many people out there that care makes it a little bit easier.

 

Christmas

Okay, so let’s start with Christmas since this will probably be the bulk of this post. We had a lot of Christmas events this year, starting with Breakfast with Santa at James’ school on Saturday, December 1st.

 

James sits in his wheelchair, wearing dark sunglasses, a green long‑sleeve shirt, and a colorful red‑and‑blue neck pillow. The wheelchair has patterned fabric with numbers and symbols on the arm rests. Behind James, several people stand in a festively decorated indoor space with a Christmas tree and holiday decorations visible, giving the scene a warm, community‑gathering feel.
Breakfast with Santa

 

A festive indoor doorway is decorated with a large balloon arch in red, white, and beige, arranged to resemble Santa faces on each side with eyes and red noses. A small paper Santa decoration hangs on the door beneath the arch. In front of the doorway, James sits in his wheelchair wearing a green shirt and headrest faces the display, while two other people stand nearby. The scene has a cheerful holiday atmosphere, suggesting a school or community event.
Waiting to see Santa

 

Santa Claus sits beside James in his wheelchair, dressed in the classic red suit, white beard, and waving cheerfully. James is wearing a green shirt and black pants. Behind them is a brown brick wall decorated with garland, a red bow, a stocking labeled “Noel,” and a sleigh ornament, creating a festive Christmas scene.
James with Santa Claus

 

Stacy, James, and Jeff pose together in front of a festive holiday backdrop decorated with pine branches and red ornaments patterned with gold snowflakes and tied with red bows. James sits in his wheelchair in the middle wearing a green shirt and a colorful neck pillow, while while stacy and Jeff kneel close on either side, leaning in with warm expressions. The hanging decorations create a cheerful Christmas atmosphere.
Family picture

 

Stacy, James, and Jeff pose together in front of a festive holiday backdrop decorated with pine branches and red ornaments patterned with gold snowflakes and tied with red bows. James sits in his wheelchair in the middle wearing a green shirt and a colorful neck support, while Stacy holds a playful Santa beard and nose prop in front of his face. Stacy and Jeff kneel close on either side, leaning in with big smiles, creating a cheerful Christmas‑themed moment.
Silly family picture

 

The following day we took James to see Caring Santa for special needs children at the mall.

 

Stacy and James are in a public indoor space with tables and chairs in the background. Stacy stands wearing a bright pink jacket, while James sits in his wheelchair with head support and a colorful neck pillow. The scene feels like a casual moment during an event or outing, with a sense of care and companionship between the two individuals.
Waiting to see Caring Santa

 

James sits in his wheelchair wearing a red shirt, Behind him is a glowing display shaped like an ice formation, lit from within with warm orange and yellow light that contrasts against cool blue and purple surroundings. The scene has a winter‑themed, festive atmosphere with dramatic decorative lighting.
Hanging out in the snow globe room before seeing Santa

 

James sits in his wheelchair wearing a red shirt and a blue‑and‑red neck pillow, with travel‑themed Route 66 padding on the wheelchair's arm wrests. Behind him, a glowing green and blue light display creates an icy, aurora‑like effect with small particles that look like drifting snow. The scene feels like part of a winter or holiday light exhibit, with a cool, atmospheric glow surrounding the subject.
In the snow globe room

 

Stacy and James face a wall‑mounted screen displaying a holiday‑themed trivia question. Stacy is standing, and James sits in his wheelchair. The room is decorated with a winter landscape backdrop showing snowy mountains and a starry sky. On the screen, a fill‑in‑the‑blank question reads “Story title: The _____ who stole Christmas?” with three multiple‑choice options below it: Jack Skellington, Grinch, and Darth Vader. The scene captures an interactive, festive moment.
Taking a quiz in the snow globe room

 

Santa Claus sits beside James in his wheelchair in a festive indoor display. Several decorated Christmas trees with lights and artificial snow surround them, along with red poinsettias and holiday props.James wears a red shirt and looks toward the camera while Santa poses cheerfully. A store and mall walkway are visible in the background, giving the scene the feel of a public holiday event.
James with Santa

 

A week later the organization that we use for James’ palliative care had their holiday party.

 

Jeff, Stacy and James pose together indoors with Santa Claus who is wearing his signature red suit with white trim, black boots, and a black belt. James sits in his wheelchair next to Santa is wearing a gray shirt and a black pants. Jeff, wering a festive Santa hat, and Stacy stand behind James. smiling warmly. On a table behind them is a small decorated Christmas tree with lights.
Family picture with Santa at the palliative care party

 

Santa Claus sits beside James in his wheelchair, dressed in the classic red suit with white trim, a black belt, and a red hat. James wears a gray shirt with red lettering, black pants, with supportive padding and a headrest on the chair. Behind them stands a decorated Christmas tree with lights and pinecones near a wall and a wooden table, creating a cozy indoor holiday scene.
James with Santa

 

In the first nine days of the month, James saw three different Santas. I wonder if kids ever question that. Like, “wait, I just saw you last week. You look different.” We don’t think James has the mental capacity to question it, but we always tell him that the Caring Santa is the real Santa. All the others are just his helpers.

Then there was a bit of a lull before Christmas arrived.

 

A holiday‑themed collage features two photos on a beige textured background. The top‑left photo shows James and Jeff lying on a bed facing each other, sharing a quiet, affectionate moment. The bottom‑right photo shows Stacy, James, and Jeff sitting close together and smiling warmly at the camera. Decorative elements include a cheerful snowman wearing a green hat and red scarf, holly leaves with berries, and the phrase “Be Very Merry” in red script with small floral accents. The overall design has a cozy, festive feel.
Our Christmas card

 

I don’t know why, but we didn’t take any Christmas pictures this year. We didn’t do many gifts this year, because there are only so many clothes or DVDs one kid needs. As long as we have each other, remain healthy, and can pay our bills, that’s all we really need.

Don’t worry, though. James did have a few presents to open. We also collected a few gifts to drop off at the hospital like we normally do. A few weeks prior to Christmas, there was a surprise donation to the kids at the hospital James normally goes to. After watching the video, it re-emphasizes why we do it. Just look at the smiles on the kids’ faces.

Santa and the Grinch surprise hospitalized kids with presents

One more thing before I finish up this Christmas section. Stacy ordered us a new ornament for our tree:

 

A hand holds a family‑themed ornament featuring three black bears wearing red‑and‑black plaid scarves. Each bear has a name label: Jeff on the left, James in the middle, and Stacy on the right. Below them is a wooden‑style plaque that reads “The Fulkerson’s.” In the background, James lies in his cushioned recliner covered with a colorful superhero blanket, giving the scene a cozy, personal feel.
New ornament for our Christmas tree

 

 

School

Just a few things to report on the school front. If you have been following James on Facebook for a while, you may recall that there used to be lots of videos of James working hard at school several years ago. After some personal issues between James’ one-on-one nurse and his teacher, we were asked to no longer take videos at school. After four years, a few one-on-one nurses, and a new teacher, the district has allowed us to take videos at school again. Here he is working with the physical therapist:

 

 

We’re so proud of him. We’re also very happy that he seems to want to roll again. We blame a lot of that on the seizures. He was never a normal kid and struggled to do something as simple as lifting his head. But once he got it, he got it. Then the seizures took over and robbed him of that seemingly simple thing.

I was reminded earlier this month of how awful things were when James was a baby—just a few months old—and he started having these weird “quirks”. That’s what we called them because we had no idea what they were. After visits to several doctors over the course of several months, and some of them saying that it was “just reflux”, we got a diagnosis: infantile spasms, which is a form of epilepsy. We’re always going to wonder if James was diagnosed earlier, and started treatments earlier, if he would have lost so much of his physical function. We know he would never be even remotely close to normal, but having one of the few things he could physically do by himself taken away is heartbreaking.

Child Neurology Foundation posted the video below on their Facebook page on December 2nd. This is what reminded me of how awful things were. Please take a couple of minutes and watch it. If you know of any children that may possibly be showing signs of infantile spasms, please get them help as soon as possible. I think one of the things that helped with the diagnosis were a couple of videos we took of James doing those “quirks” to show to the doctors.

https://www.facebook.com/CNFoundation/videos/309881236288154/

 

I went off on a little tangent there, but I thought that was important to share. Back to school. Actually, there’s not much else to report other than he had two consecutive three day weekends. For the first one, he was off on a Monday because his one-on-one nurse had a minor health issue that she was dealing with. Then that Friday he must of woke up and said “hey, I’m going to see if I can get another three day weekend.” These were his numbers when he woke up:

 

A close‑up of a James' pulse ox shows two digital readings: “90” in red numbers, which is his oxegen levl and “161” in green numbers, which is his hear rate. Part of a room with furniture and fabric is visible in the background, giving the scene a real‑world, in‑use feel.

 

Sats in the high 80s or low 90s with a heart rate above 150 is usually a sign that he’s sick. Okay, so keep him home from school to keep an eye on him, call palliative care to request a nurse stop by if he doesn’t improve, and a possible trip to the ER for a chest x-ray. That’s the usual drill. Well, by 9:30 am his sats were in the mid-90s and his heart rate was down to 115. At 2:30 pm, he was still satting in the mid-90s and his heart rate was in the mid-80s. Nicely played James. Nicely played.

 

Sleep When Your Baby Sleeps

You know the old saying, “sleep when your baby sleeps”? For some special needs parents, their child never stops being a baby mentally. For other special needs parents, their “baby” has medical issues that require around the clock care. I think James falls into both of these categories, but it’s the around the clock care that throws that “sleep when your baby sleeps” out the window. His pulse ox alarm has been going off in the middle of the night so much lately that Stacy decided to take a picture of the clock every time his alarm went off for one week.

 

An eight‑image collage shows different digital clock displays glowing in the dark, each captured during early‑morning hours. The times include 2:13, 2:26, 2:30, 2:38, 3:42, and 5:15 AM, with indoor temperatures around 66–67°F also visible on the screens. In the center of the collage is a bright yellow smiley face graphic with X‑shaped eyes and its tongue sticking out, adding a humorous, exhausted tone to the collection of sleepless‑night timestamps.

 

5:15 am is when her alarm goes off in the morning to start the day. During that one week period, James only managed to make it through the night without a drop in his sats twice. The other five days his pulse ox alarm went off due to low sats any time between 2:13 am and 3:42 am. Sleep when your baby sleeps doesn’t work in this house.

 

A Note to Delivery Drivers

And finally, a Public Service Announcement to delivery drivers. If you are making a large delivery to a house with a ramp to the front door, please don’t put the boxes in front of the ramp. We had a delivery of medical supplies a couple of weeks ago and the driver stacked the boxes right at the end of the ramp in such a way that Stacy couldn’t fully open the door to get James up the ramp and into the house. To the driver that delivered the Target box, we’ll give you a pass this time. You were probably just following the previous driver’s lead and just placed the box on the stack.

 

A tall stack of seven cardboard boxes sits on a front porch beside a window and a door. The boxes are arranged from largest on the bottom to smallest on top, forming a slightly precarious tower. Behind them, the window blinds are open, and a blue‑and‑yellow “NOTICE” sign is visible. The scene suggests a large delivery left at a residential entrance.
Please don’t stack boxes at the end of the wheelchair ramp

 

A stack of cardboard boxes is piled directly in front of a doorway, completely blocking the entrance.Stacyt pushes the door open, revealing the boxes are blocking the door from fully opening and blocking James from gettin in or out of the house. The packages vary in size and have printed shipping labels and logos. Part of a doormat and the exterior siding of the house are visible, creating a humorous scene of an over‑the‑top delivery blocking the way out.
We can’t fully open the door to get James into the house with the boxes stacked there

 

Thank You

Thanks again for everything you have done for us this past year…no matter how big or how small. We wish all of you a happy and healthy new year.