Father and Son Project and the Weed Talk

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Not much had happened over the past couple of weeks other than a meeting with James’ neuro, so I had contemplated holding off another week to post something. Then we had a bit of an ironic situation and I just had to share it.

 

Rebuilding Mommy’s Closet

Remember in the last post when I asked how many shirts does a kid need because Stacy had bought 60 new hangers for James’ shirts, and she still ran out of hangers? I’d like to revise that question and ask how many shirts does anybody need? Friday evening, I was working on the computer and heard this loud crashing noise. Stacy came running down the hall because she thought that I hurt myself. “I’m fine dear, but what the hell was that noise?” It took us a few minutes to figure out that the noise came from our bedroom:

 

A closet area shows collapsed or detached shelving with a large pile of clothes spilling onto the carpeted floor. Garments in red, green, black, yellow, and purple are mixed across the fallen shelves. A white air purifier stands in front of the mess, and a boxed portable fan sits nearby. Loose hangers and wires are scattered on the carpet, and the beige wall behind the closet shows exposed brackets and holes where the shelving used to be.
Stacy’s closet came crashing down

 

Apparently, James wasn’t the one I should have been worried about having too many shirts. That was Stacy’s closet that came crashing down. It turned out to be a good father and son project. I ran out to Menards yesterday to get the parts we needed, and James and I had it all put back together…stronger than before.

 

A beige wall holds a two‑tier white wire shelving system supported by vertical metal brackets. Several white spackle patches mark areas where holes or hardware were repaired. A light switch sits to the right, and the top of James' head appears at the bottom edge of the frame, suggesting someone checking the newly installed shelves.
James and I rebuilt Stacy’s closet

 

Update October 23rd: Stacy got all of her clothes hung up in her new and improved closet.

 

An open closet shows two rows of clothing neatly organized on hangers. The upper rack holds shirts and tops in a wide mix of colors, while the lower rack carries more clothes, including dresses, skirts, and pants with some striped patterns. A large blue storage bin and a gray step stool sit on the carpeted floor. The top shelf holds folded items and miscellaneous belongings. The closet is set into a beige wall, with part of a framed picture visible to the right.
Stacy’s closet all put back together

 

 

The Weed Talk

Now onto a more serious subject. After exhausting all other options to treat James’ seizures, we started the ball rolling on getting our medical marijuana cards so that we can see if marijuana is the cure we’ve been searching for for the past 7 years. The last step before applying for our cards was to get the neurologist to sign some paperwork confirming that James has epilepsy. It was that simple. Last Wednesday we all put green on and went to talk with the neuro.

 

A four‑panel collage shows different green‑themed images: feet in white socks with green toes on a light wood floor; Stacy wearing a bright green shirt with white text on the shoulder; Jeff in a green plaid shirt working at a computer; and a green ribbon labeled “CEREBRAL PALSY” with a silhouette of a person using a walking aid inside a star. Across the center, bold green text reads “Green for James!!” creating a unified message of support and awareness.

 

James lies on a patterned surface wearing a green T‑shirt featuring a Minion character and the bold text “WHO’S AWESOME? I’M AWESOME!!” To the right, a green ribbon labeled “CEREBRAL PALSY” appears with a star and a silhouette of a person using a mobility aid, creating a bright, upbeat mix of positivity and awareness.

 

It sadly did not go as planned. He refused to sign the paperwork and said something about there not being enough medical literature about the effects of using marijuana to treat children with epilepsy. Stacy lost her shit…and for good reason. She’s the one that spends the most time watching James seize day after day and feeling helpless that there is nothing that she can do.

At one point Stacy threw a folder with a bunch of paperwork in it across the room and called herself a bad mother for wanting to stop James’ suffering. The neuro got a little bit argumentative as well and restated his stance that he does not feel comfortable prescribing marijuana to James because there is not enough information in the medical journals to support giving it to kids. He even said that if we really want to start James on medical marijuana then we should find another neurologist.

I think that James feeds off the emotions of others around him, because after Stacy and the neuro started having their heated discussion, James had a cluster of seizures. It’s like he was picking up on the negative vibes in the room. Or maybe it was just him saying “look doc, the drugs I am on now are not working, please let us try something else.”

After everyone in the room calmed down, we decided to give Charlotte’s Web another try at a higher dose and add in yet another anti-seizure med. As much as we wanted the doc to sign the paperwork and get James on marijuana, he just wouldn’t budge.

We talked on the way home and came to the conclusion that maybe this is for the best right now financially. I would probably need to get a second job to cover the cost of the marijuana, plus the clinic appointments, which would not be covered by our health insurance. Depending on a few different factors, the medical marijuana alone could cost somewhere over $700 a month. We probably have enough in James’ medical fund to cover maybe 6 months’ worth of marijuana, but after that, I don’t know.

First things first. We’re going to try the CBD oil and the new seizure med that the neuro prescribed and see if those work. If not, we will probably be looking for a new neurologist that would be willing to put James on marijuana, and then worry about the cost and how we’re going to pay for it.