June 2023 Monthly Update

This is another one of those posts where the original title, “Oral Surgery Consultation, Spinal Fusion Anniversary, Mother’s Day, School, Van Fundraiser, and Working with Mommy”, was just a bit too long, which is why I shortened the headline to “June 2023 Monthly Update”. My last two posts covered his graduation from junior high, and the countdown to the last day of school. This post is intended to catch you up on everything else that has happened in James’ life over the past month or so. As you can tell from the original title in the first sentence of this paragraph, there is quite a bit to go over, so let’s get started, shall we?

 

Oral Surgery Consultation

If you recall, we’ve been trying to find an oral surgeon to do some reconstruction on James’ lower jaw to make room for his tongue. His lower jaw is narrow so his tongue lays at an angle which may be causing some of his respiratory problems.

The oral surgeon that pulled out a bunch of James’ teeth many years ago is no longer affiliated with the hospital so he wouldn’t be able to do any work on James’ mouth. He offered to contact a colleague that is affiliated with another hospital, but we declined because that hospital was much farther away.

Stacy found an oral surgeon that is affiliated with the hospital that is like ten minutes from our house, but when we met with him, we found out that he only has access to the hospital for outpatient surgeries. James’ surgery would more than likely be inpatient, so he wasn’t able to help us. He said that if we were to take James for CT scan of his head, he would pass the info onto an oral surgeon at Loyola University Medical Center that may be able to do the surgery there.

On May 9th we had a consultation with that oral surgeon at Loyola, and unfortunately it didn’t go as well as we had hoped. He just didn’t feel comfortable with James and the work that was required. It sucks, but at least he was honest. He had a conference to go to the following week, but said when he gets back, he would pass James’ info onto a colleague over at UIC Medical Center to see if they might be more comfortable with the work that James’ would need to have done to get his tongue to lay flat.

I’ll be honest. I am not holding my breath. I didn’t think finding a pediatric oral surgeon would be such a pain in the ass. I get that James is more complicated that most kids, but still. There has to be someone out there that is capable and willing to do the surgery, isn’t there? I’ll let you know if and when we go to UIC. Please pray that they say that they’ll do the surgery.

 

 

Spinal Fusion Anniversary

Four years ago, on May 23, 2019, James had his full spinal fusion. It was a long surgery followed by a long month in the hospital, but we have no regrets. We would absolutely do it again, as we think it really helped him by taking pressure off of his internal organs and brining them back to where the should be. Happy 4th Spinal Fusion Anniversary buddy!

 

A multi‑image collage documents James’ spinal‑surgery journey. In the top left photo, he lies in a hospital bed with medical equipment nearby and a colorful cape over him. The top right photo shows him face‑down with a long surgical incision along his spine. The middle left image shows James sitting in his wheelchair wearing a hospital gown and neck brace, surrounded by medical equipment. At the center, a graphic reads “HAPPY 4TH SPINAL ANNIVERSARY” over a background of red, blue, and white heart shapes. The middle right and bottom left images show X‑rays of his spine with surgical rods and screws visible. The bottom right photo shows his healed vertical scar. Together, the collage highlights the medical reality, recovery, and resilience marking his fourth spinal‑surgery anniversary.

 

 

 

Mother’s Day

Mother’s Day. The one day every year that we take time out to celebrate moms; to thank them for everything they do for their kid(s). Moms of special needs children should be celebrated every day, and not just on Mother’s Day. This is not to say that moms of “normal” kids shouldn’t be celebrated as well, I just think that special needs moms go through so much more than regular moms do. Depending on the severity of the child’s special needs, they aren’t just caring for the child until he or she reaches a certain age. In some cases, like with James, Stacy (and I) will be caring for James for his entire life.

Think about that for a minute. Whereas most parents can set their kids free once they reach 18, special needs parents may not have that option. Their kid may never be able to leave home and venture out on their own. They will need to be under their parents’ (or someone else’s) care for their entire life. If they live to be 30-, 40-, 50-, or 60-years-old, they will always need to be cared for.

I know that there are dads out there that are the primary care givers for their special needs child, but I think in most cases it’s the mom that assumes that role. And that is why I think they should be celebrated and thanked more than just the one day a year that we call Mother’s Day.

 

A close‑up black‑and‑white photo shows Stracy holding James' hand and kissing it softly in the NICU when he was a baby. Stacy's eyes are closed, giving the moment a calm, tender feeling, and a small pendant necklace rests against her skin. James is nestled close, with a peaceful expression, creating a quiet, intimate scene that highlights affection and closeness between them.
Stacy and James in the NICU, September 27th, 2009

 

Black‑and‑white photo of Jeff, James, and Stacy on a wooden dock beside a calm body of water. James, in the center, sits in a wheelchair, with Jeff and Stacy kneeling close on either side, holding hands and leaning in toward him. Sunlight from behind creates a soft glow around the group, giving the scene a peaceful, supportive atmosphere.
James with Mommy and Daddy, October 8, 2022

 

 

School

It seems I’ve fallen a little bit behind here. James graduated from junior high three weeks ago and there are still a couple of school related things I haven’t shared with you all yet. Hope you don’t mind if I hit rewind for a few minutes here are go back to before he graduated.

First of all, if you are not on Facebook—or aren’t following James on there—and haven’t seen the poetry readings he did towards the end of the school year, I have uploaded them to YouTube, and you can view them below. Since James is unable to speak, his teacher recorded herself reciting the poems and had James play them by hitting his switch.

 

 

 

Of course, we can’t finish off the school year without the “Last Day of” picture. In addition to being the Last Day of 8th Grade, it was also the last day of being in the elementary school district.

A side‑by‑side collage shows James in front of his house on two different school days. In the left photo, he sits in his wheelchair wearing sunglasses and a gray shirt, holding a sign that reads “FIRST DAY OF 8th Grade.” In the right photo, he’s in the same spot wearing a gray hoodie and jeans, holding a sign that says “LAST DAY OF 8th Grade (Dist 54).” The background includes the porch, window, and door of the house, creating a clear before‑and‑after moment that marks the beginning and end of his eighth‑grade year.
First Day and Last Day of 8th Grade

 

A two‑photo collage shows James at two different points in his school journey. In the top image, he is a young child lying down with supportive cushions, holding a decorative sign that reads “First Day of Pre‑K,” with a stuffed animal nearby. In the bottom image, James is older, lying in a similar supported position and holding a sign that reads “Last Day of 8th Grade Dist.” The paired photos highlight his growth over the years, creating a clear before‑and‑after moment that connects early childhood to the completion of eighth grade.
First Day of Preschool and Last Day of 8th Grade

 

A graduation‑themed picture frame features a black and gray border with a decorative tassel made of gray beads and a yellow string. A white tag with gold stars hangs from the frame, printed with “CLASS OF 2023” in gold lettering. Inside the frame is a photo of James wearing a cap and gown, sitting in his wheelchair in front of a sign that shows a knight logo and the words “CRUSADERS” and “WELCOME JUNIOR HIGH.” The overall look highlights a celebratory moment marking the transition into high school.
Congrats to our Junior High graduate, Class of 2023

 

In the fall he will be moving on to high school. There’s going to be so much new for him in the fall and we hope he handles the transition well. He’s going to be in a new school, a new school district, have new therapists, and a new teacher. Fortunately, he may be keeping his one-on-one nurse. She was hired and was paid by the elementary district. The nursing agency is working with the high school district to see if they can get the nurse and agency under a contract with the high school district. Hopefully this will happen so James and the nurse can go through this transition together and he won’t be going it alone.

 

 

Van Fundraiser

Just wanted to say a quick thank you to all of you who have made a donation to our fundraiser, purchased a shirt, or both. We really appreciate all of the generosity. Please feel free to pass on the links to the fundraiser and shirt pages:

Monetary donations: https://helphopelive.org/campaign/21730/

Shirts: https://www.bonfire.com/rollin-for-james

Here are just a few of our donors showing off their shirts:

 

A four‑photo collage sits on a purple background with a white textured border at the bottom. In the bottom left image, James is in his wheelchair outdoors, covered with a red blanket that reads “YOU ARE LOVED,” while his nurse stands beside him in a parking lot with cars and trees behind them. The top center photo shows a child indoors wearing a gray shirt with a cartoon monkey face and the words “Rollin’ for James.” The top right photo shows an adult woman sitting on the grass in sunglasses and a gray sweatshirt with the same monkey design. The bottom center image shows two people standing outdoors near trees, both wearing matching “Rollin’ for James” shirts. Together, the collage highlights a supportive community event centered around James.
Some of our donors showing off the shirts that they purchased

 

 

Going to Work with Mommy

Stacy normally schedules her dog walking jobs around when James is either in school or I am home. It’s rare, but sometimes she has to take James to work with her. Last week James got to meet a couple of Stacy’s clients, Thor and Bailey.

 

A six‑photo collage with the words “Meeting new friends” at the top. In the largest image, a brown dog leans in close to James’ face as he sits in his wheelchair wearing a gray hoodie and blue sunglasses, the dog appearing to nuzzle him. Other photos show a white dog greeting James in sunglasses, James at a doorway with both dogs nearby, and the white dog standing on grass. The collection captures easy, joyful moments of connection between James and the two dogs as they get to know each other.
James met a couple of the dogs that Stacy walks

 

Thor was really interested in James. Bailey, not so much. The following day, Stay got this text message from Thor and Bailey’s owner:

 

A screenshot of a text message exchange shows one person describing how Thor, their dog, went to the rear garage door that morning, sniffing and checking to see if James was inside — something the dog never usually does. The sender calls the behavior cute. The reply says, “Aww he misses his buddy!!! James might just have to come back in the future,” with a “Delivered” status beneath it. The timestamp at the top reads “Today 9:24 PM.”

 

Thor was looking for James! Maybe James will go back to see him sometime.