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.