This is my first attempt at a diary, and it's certainly not on a topic i would have wanted to write about, so please bear with me.
On Friday, August 15, about 10:00 am, I was sitting outside my door having a smoke, when a local policeman came up my walk. First thought to pop into my mind -- what did Taylor (18) do now, although I knew she was in her bed asleep. As was Jeffrey (14), maybe it was him who had gotten into something. Now, I can only wish that it was a dream, that one or the other of them was sitting in jail. Instead, he came to tell me, horrifyingly, that my oldest son Tucker was dead. One week before his 27th birthday, my pride and joy, my baby all grown up, was gone.
Tucker lived with epilepsy from the age of four. Initially, his seizures were simple partial seizures, which usually caused him to fall, and his left side would seize, spasming furiously. But he did not lose consciousness, and remembered the entire episode. He would be a little weak after, and a little mortified that he had wet himself (that part was outgrown by about age 7). There was an extended hospital stay when the seizures started, with CT scan, MRI, several EEG tests, among others. No cause was ever determined, they diagnosed non-specific epilepsy.
It took quite a few tries to get his meds right, finding one that worked without too many side effects. In kindergarten, he would occasionally have a breakthrough seizure, so he wore a helmet to school all year. His meds did get settled eventually, and he only needed to visit his neurologist once every year or two for a med check and general overhaul. The last time he saw a neurologist was the summer he was 15. He spent four or five days in the pediatric ward next to Marshfield Clinic in Marshfield, WI, with wires attached all over his head. They were all gathered up with a tie and looked like some freaky electronic ponytail. The wires connected to an EEG machine, and recorded all his brain waves while he was in there. It showed that the funny feelings and spasming in his left arm were in fact seizures. So we tried a couple new meds, one of which he was still on when he died.
In his late teens and early twenties, Tucker had a few seizures while awake, generally after missing a pill or two. They became more severe, involving his whole body, and losing consciousness. We got his dosage changed, and he has been on that same dose of the same drug ever since, with very very few seizures in those years.
Tucker had mentioned to me that he had started having seizures in his sleep again, but he didn't make a big deal of it, so I didn't ask any more questions.
Tucker was on medical assistance for a time when he was living with his Grandpa in Minnesota and working at McDonald's after high school. He did have a physical, got new glasses, and got his teeth cleaned. But although I mentioned it several times, he never got a referral to a neurologist. He started college at WITC Ashland in 2007, and his worker, after his first year, realized he had left the state and promptly canceled his MN Medicaid. Being in Wisconsin, he was not eligible as he didn't have kids, even though his income was waaaay below poverty level. He had mono his second year, and bronchitis his third. Those bills will never be paid. He was able to get on a prescription drug program that allowed him to get his prescription for $20 a month, which was a lifesaver as retail price was nearly $500 a month before going generic. He could tell the difference when they changed to generic, and they didn't work as well. He graduated from WITC in 2010, with honors, with an AS in computer network specialist. At his graduation party, he gave everyone the news that he was going for his bachelor's degree at UW Stout in Menomonie, WI. He completed two years there, just a few credits shy of his degree. Tucker worked for The Geek Squad for quite awhile, both in and our of school, and had several contract jobs before getting hired in late January by Plum as a tech help representative from home. Still no insurance, but the night of the Obamacare signup deadline I helped him find a silver policy with only $3000 deductible and zero copays, even for specialists. Unfortunately, with rent, car payment and student loans, he just did not have the money to pay the premium. He was very well liked at his job, was a great worker, and was told that he could easily be promoted to a team leader in short order, which would mean a raise and benefits. He thought he could wait. But it didn't come in time. One of his coworkers talked to the CEO on Friday. Tucker was to have been promoted to head of export division. He would have been told on Friday August 15. The day he died.
More below the squiggle...
One thing that really hurts me is that, living in Wisconsin while in college, he was financially eligible for Medicaid. If Scott Walker had taken the expansion, Tucker would have had insurance while between IT jobs (when he generally went back to McDonald's to make his truck payment). He could have gone to a neurologist, gotten some tests done, and had his meds changed or tweaked. In a way, I blame Scott Walker for Tucker's death. I have read the stories, seen how many people would likely die in the states that refused the Medicaid expansion. I never imagined that one of those people would be my son.
If you're interested in getting to know Tucker, his sister (18) and brother (14) created a memorial page on Facebook. It's Rest in Peace Tucker DeWolf, and is full of tributes and memories and pictures that let one see what kind of a young man Tucker was. More is posted at his personal fb page, Tucker DeWolf. There is also a crowd-funding link to CrowdWise, where we're trying to raise money for his funeral. I am disabled and have very little I can contribute without taking some of our limited food off the table. Please help a little if you can. Being on disability, I'm on Medicare, so did not have insurance that I could have kept him on until he turned 26.
This being my first diary, you don't know me, but I've been reading a long time, and commenting some, so I feel I know some of you from reading your diaries and comments. I feel like I'm a member of the kos family. Thank you for reading.