I need to get this out. Part of my story.

I'm unsure why I feel the need to share this right now, but it feels like I'll explode if I don't get it out. I don't have anyone to talk to about this, because I have to always be the rock. I'm the one that keeps everyone else in the family going, but I'm struggling hard. There are many chapters of pain in my life, but this one is by far the hardest.

There may be a lot of triggers in this, and I'm still trying to figure out how the features here work. I'm going to try to black them out, but if I fail, I apologize.

My son is literally my world. He's 23, and I'm his caregiver. He was healthy and appeared medically normal until he was 17 (aside from suspected autism and migraines that started around 11). That all changed in 2019.

I'll give a little background. I'm autistic, but I wasn't diagnosed until last summer at the age of 39. Looking back it should have been obvious to EVERYONE, but instead I was just bullied and treated like the weird kid. I lacked the maturity or social skills to understand that people who were being "nice" to me were mostly taking advantage. I also struggled with emotional issues due to things that happened to me as a toddler that made me very vulnerable to people with bad intentions.

When I turned 16, my friend (one of the very few) also turned 16 and got her first car. This allowed us a level of freedom that I hadn't experienced before. We started going to parties and places we shouldn't be. It was at one of these parties that I got pregnant. I had a few hard lemonades and didn't understand that the attention I was getting from the adult men at the party wasn't positive. I'm not going to go into details, but I met "Sleepy". He was 21, and I thought he liked me. We hung out a few times before I found out I was pregnant. I went to the health department in my town to get put on birth control, and was informed that pregnant people can't use birth control. I made them retest me. That's how i found out. My pregnancy was difficult. I had hyperemesis gravidarum (although I only learned what it was years later, everyone just kept calling it morning sickness). I lost about 20 lbs in the first 25 weeks of my pregnancy.

It was around this time that Sleepy showed up at my school library while I was studying one day and handed me a little slip of paper that said "MELAS Mitochondrial Myopathy". He told me that I should do research on this condition that he got from his dad because the baby might have it too. This was in 2001, so information was limited, but everything I found was horrifying. Sleepy had started having ministrokes at 12! I went into premature labor at 29.5 weeks (I believe due to the physical and mental stress), labored for three days and had my baby at 30 weeks. He was only 3lbs. (On a side note, he was AFAB, but is now nonbinary and prefers masculine pronouns.) He stayed in the NICU for about 7 weeks before we were able to bring him home. My parents helped me immensely in raising him. They may not have been supportive in other ways, but they were when it came to their grandbaby. We lived with them most of his childhood, with a few years away here and there. He showed signs of autism from a VERY young age, but the area we were in lacked the resources to get him a diagnosis. In those days it was harder for girls to get a diagnosis still anyway. He was a handful, but his physical health always seemed great. I had mentioned the MELAS to his pediatrician, but she assured me that it could only be passed to him if I had it too. She also told me that testing would require a painful muscle biopsy and she didn't want to do the test unless he showed symptoms. I agreed with the plan, but the seed of fear had been planted and continued to grow with every little illness.

He started having migraines around the time he started his period. I took him to the doctor several times over the years as they increased in intensity, but nobody took it seriously. We were in NW Florida at the time, not the best healthcare around. They got to a point where they would mimic the signs of a stroke, and the doctors just called it hemiplegic migraines. We finally moved to Colorado in 2017, and the healthcare here is much better. He wasn't getting as many migraines as he was in Florida and I thought things were improving.

****If medical crisis, or malpractice situations trigger you DO NOT READ ANY FURTHER***** (I'll try to figure out how to black out the really rough parts)

In January of 2019 I was in school to become a Vet Tech (something I'd always wanted to do, but never felt capable before). I had only started in November, but I was already really enjoying it. I did evening classes, and one evening when I got home my son was complaining of a headache. He was cooking himself some chicken, and when he went to bite it I noticed that it was still raw. I remember thinking that was really strange, but when I stopped him and pointed it out he blamed his headache and said he was going to go to bed. I hugged him and he went to bed. I was in the living room watching tv and my dog (border collie/pit mix) started pacing. At first it was just by the hallway, but she soon started pacing to me and back towards L's door. She seemed distressed, so I got up and followed her. I called 911 and they rushed him to the local major hospital. I gave medical history, including the strokes that his father has had (as well as his dad and sister). I also mentioned the hemiplegic migraines. The doctor in the ER told me that L was too young to have a stroke and that he needed a migraine cocktail. I pointed out that his father's family all started having strokes as teenagers, but was dismissed. The migraine cocktail seemed to calm him, but it was still very obvious that something was wrong. At that time I hadn't yet learned how to advocate very well. I pushed for an MRI, and this woman looked me in the face and said "I could admit him for further testing, but it would just be a waste of everyone's time since he's just faking anyway". She claimed that the migraine cocktail was the reason that he couldn't walk or speak and that he just needed to sleep it off. She discharged him to go home, so I took him home.

Within a couple of hours it was obvious that he was declining, and he started neurostorming (I had no idea what this was before, it really freaked me out because he was cold, but there were these bright red patches that were HOT). Back to the hospital we went. Thankfully shift change had occurred and the new doctor took it very seriously immediately. They decided to move him to Children's Hospital in Denver, but there was a snowstorm that had the helicopters grounded. We had to do the trip in an ambulance in nasty weather. I just remember being so scared that I was numb while the EMT was telling me about the Children's Hospital and the food in the cafeteria. I remember lying on the little sofa in his room by the cold icy window feeling so scared and alone. My mom was flying in the next day from Florida, but I was a wreck. I don't remember anything else specific until the next night when my mom arrived at the hotel next to the hospital. I had never needed a mom hug so badly in my life. That hug is the next thing I rememeber. My mom would end up staying in L's room for 4.5 months until the day he was discharged.

I'll write more in the comments later.

Part 2: Children's Hospital
***Potential triggers***

So we left off at L's admission to the hospital.
The imaging showed immediately that it was bad. The entire right side of his brain was affected. There was no clot, and they couldn't understand why the blood flow had stopped to half of his brain. I'm not a neurologist and I don't understand all of the terms that were thrown around at that time. I was at rounds every morning listening, but the team always seemed so puzzled by his presentation. They settled on channelopathy as the most likely , but they had to do genetic testing to see if they could find the cause. They reinforced what the pediatrician had said when he was a baby, that it couldn't be mitochondrial in nature because it was inherited paternally. They decided to do a muscle biopsy anyway to be 100% sure.

"Abstract Channelopathies are a recently delineated, emerging group of neurologic disorders united by genetically determined defects in ion-channel function. These disorders are characterized by a prominent genetic and phenotypic heterogeneity that can make them challenging and bewildering to understand." nih.gov

He was also now having seizures. He was completely unresponsive, but he was at least breathing on his own. The seizures, as the EEG showed, weren't localized to a specific area. They were EVERYWHERE and they were never completely stopping. Before one would end, another would start in a different area. They started trying medications to get them under control. This would be a long process. The hospital stay is a little fuzzy for me, like I don't remember the chronological order of a lot of it. I think it was just all too much for my brain to process at the time. I'm working on it now, but the rest of this part may come off as a little disjointed (that's how it is in my head).

I remember that we moved a LOT in the first 6-8 weeks at Children's. We would move from ICU to Neuro, back to ICU... rinse, and repeat... It was always something different though. It felt like every day there was a new symptom or test result that was stumping everyone. They called in experts from Baylor and The Mayo Clinic for help, and I was even able to track down Sleepy to go give a DNA sample in Florida so that the doctors could compare it to L's. The results would take months.

I remember that I was told regularly that I needed to accept that L would never walk or talk again due to the damage to his brain, and that he would likely not wake up at all. They were always gentle and kind about it, but I know they thought I was in denial. Maybe I was. I just always felt like he was still in there, and I wasn't going to give up on him.

I forgot to mention earlier that whatever this was had ravaged Sleepy's family. He got it from his dad, who had passed away in his early 30s. His half sister had also inherited it, but she had passed very young. 19 or 20. Sleepy was the only one left with it, but he had come back from several of these "events" by this point. He was still very much able to walk and talk, and he credited cannabis with keeping him seizure free. (I mentioned all of this to the doctors, especially since his seizures were far from controlled)

The first positive thing I remember was one of my favorite memories ever. The neurologist came into the room and was talking to me and my mother. His back was to L, and we could see him over Doc's shoulder. I don't remember what I said to prompt it, but the neurologist said something to the effect of 'You need to accept the fact that this is likely permanent. He is not the same person anymore and never will be'. Before I could respond I saw movement from L's bed. It wasn't a seizure though. His left hand raised up slowly, and his middle finger extended upward to the sky. My mom saw it at the same time and said "He's flipping you off!!" The neurologist had time to turn around a see it before it dropped back to the bed and L was out again for a while. It was better though because I knew for a fact that HE was still in there. They stopped telling me that he wouldn't wake up, but they did stress that speech and mobility would be destroyed because of the parts of the brain that were involved. I didn't care. We would figure it out as long as I had my son.

It was around that time that they decided to try an IV drip of ketamine to stop the seizures. I hated everything about that 3 days. L would open his eyes and you could tell he was hallucinating hard. He was terrified and would try to kick and swing, but he never made eye contact or showed any sign that he could actually see us. He would later tell me that he was "fighting demons" and he can't watch Supernatural anymore. It was one of his favorite shows at the time. I had been pushing for cannabis treatment for weeks at this point and I finally demanded that we try because the ketamine was NOT the answer. They tried to get approval for epidiolex (FDA approved cannabis-derived medication), but the hospital and insurance wouldn't approve it for him at that point. I was able to convince Children's Hospital to allow me to sign waivers to bring in my own. I immediately went to a dispensary (Denver is FULL of them) and was able to get him some drops that were made specifically for seizure disorders. Within 48 hours of starting them, his seizures had decreased by about 70% and they just continued to improve. L was covered in bruises from his "demon fighting", and we had to make our own padding for the bedrails because the ones that velcro on weren't cutting it.

They told us that our projected discharge would be the end of April. I started looking into CNA programs so that I could become his caregiver. Colorado is one of the states that actually allow family members to get paid for caregiving. It was obvious that I would not be able to leave him alone to go to work, so we had to come up with a plan. I pivoted from animals at vet tech school to humans at CNA training. I feel very lucky that the home healthcare agency that I signed on with paid for my classes and that I've been able to remain employed as his caregiver for the past 5.5 years. As I was taking classes, L was coming back to us. Every day I would get back to the hospital and mom would tell me about the improvements. At first it was little things like eye contact and small movements of his face or hands. Limbs came back one at a time, the arms before legs and left before right. He was still unable to speak, but it was obvious that he understood what you said to him and he wanted to communicate. The hospital gave him a new IPad (donated by an anonymous local family) with a really cool program for communicating. There were buttons for common words with pictures for identification. You could also make your own buttons for words that you use often and pull up a keyboard for typing. It would then "talk" for him and say whatever he had put in. It became clear very quickly that his personality and weird sense of humor were intact.

He was still having seizures, but not nearly as many. Only around 10 a day at the most. He was able to get up into a specialized wheelchair for a few hours a day in small increments. It had head and neck support because he was still very floppy and weak. The genetic tests came back. They showed a few gene mutations that L and Sleepy shared, but none of them were "known to cause any issues". The geneticist told us that he was sure they were the key though. He told us to retest every 3-5 years for updates.

Over the next two months he slowly regained strength and the ability to stand up, and then walk short distances. His speech started to return, although he had severe aphasia and apraxia. He had trouble finding the right word in his brain, and even when he found the right one it was difficult for him to say the word. This also got a little better every day until we were finally ready to go home on April 25. During this time I also moved us from our upstairs apartment (absolute craphole) to a nicer ground level apartment with only one step to get up from the parking spot to the sidewalk. My 1995 Ford Taurus also finally called it quits, and my mom was generous enough to buy me a new *pre-owned* car. I'm very grateful for all of her help, but I can't help but feel like she's trying to make up for shortcomings and mistakes in raising me. I'll take the help either way though if it benefits my son. His discharge truly felt like the beginning of a new chapter of our lives. I still didn't understand how drastically our daily lives would change though.

That's all for now. I'm sure I'll come back and update with more of the story.