Help Heaven Fight Epilepsy and Support Her Family

Let me tell you a story. I want to preface this by thanking everyone. Thanks to everyone who has helped in the past three years. You all know who you are and are amazing. I couldn't do it without you.

My boys were born on August 12th, 2021. The birth itself went swimmingly, and we stayed in the hospital for a few days before we went home. At home, Heaven and I were feeling a bit off, so naturally, during the height of the COVID pandemic, we took tests and were positive. Our in-laws offered to take our newborn boys so they would have a nice sterile environment in their first weeks. After a few more days, Heaven and I started to feel worse. I was staying up all night because it hurt to sleep. I remember coming into our living room at 7 am after being up all night to tell Heaven that I was going to try to get some sleep. I went back to the nursery to turn everything off, and I heard a horrendous noise. It sounded like someone was trying to clear their throat and yell at the same time. I rushed out into the living room to find my wife actively seizing in her chair. I made sure her airway was open and called 911. Luckily, they were there within 10 minutes. The next few hours/days were torture as I couldn't be with her or with the boys. They were running test after test, initially thinking she had a blood clot in her brain from giving birth. They started her with blood thinners, and we went on our way after a few days. She had another seizure within a week. Another emergency room visit and more tests. It was roughly 2-3 months before any doctor suggested she had epilepsy.

(Not to mention, on September 2nd, my dad passed away while on hospice. Luckily, he was able to hold my boys before he went.)

Fast-forward a few more months, Heaven has started a regimen of medicines to get this under control. We moved in that time frame, sometime in October that year. Heaven would still have seizures from time to time, but not as severe as her first, and she would bounce back from being in a tired stupor fairly quickly. I was running through different jobs because I couldn't leave her at home with the boys alone, risking her dropping one of them or having a seizure and asphyxiating. We finally got set up to see a neurology team down in Indy. They were confident with the right medications and active treatment we could get her down to one or no seizures. So we started trying different medicines, different combinations, essential oils, anything we could think of. Sometimes it seemed to help, and she would have a couple of good months where she would not have ANY seizures, but out of nowhere, she would go back to having one a day or every couple of days. This was like this for much of 2022. Trying to keep my job while balancing doctor's appointments, being an active father, and trying my hardest so I can be all that I can be.

In early 2023, I'm between jobs, and I happen to find what would be a huge blessing in my current workplace. They are understanding of my situation, understanding of my home life, and actively want me to succeed not only in my career but as a father and husband. My boss told me that family comes first, and he has NEVER pressured me in any way to put my work before them. I will be forever grateful to them.

Later that year, the doctor starts to hint at the fact that Heaven very well may be medication-resistant. It only occurs in 20-30% of all epilepsy patients. If that's the case, we need to try ALL available medicines and then start working towards the path of surgery options. So we start having EEGs, EKGs, multiple MULTIPLE scans. We get a 5-day study set up for her in 2024 so they can map the exact locations she is having seizures in her brain. Also of note, my mom got cancer, fought cancer, and succumbed to cancer all in about 3-4 months. She passed in June of 2023 while also being on hospice.

We have some good weeks, some really bad weeks. Multiple hospital trips, doctor's appointments, and generally everything else that comes with toddlers and more. I honestly believe I am missing more work than I am working. Money is incredibly tight, and I'm doing whatever I can to make ends meet. Heaven starts up crocheting, partially because of my mom, but also because she wants to contribute in any way she can.

We get to the big 5-day stay, and they confirm that all of her seizures are happening in her front left temporal lobe. This makes perfect sense to me since this is one of the memory centers of the brain. See, when Heaven has a seizure, I have no idea what version of her I will be talking to. She loses time. Sometimes she can't remember the day before, but she has slipped back to being 8 months pregnant. Those trips are the worst because I have to be there for her during some of the most traumatic experiences in my recent life, and I have to try to explain to her everything that has happened. It can be pretty jarring time traveling 3 years into the future when the sons you remember were last gestating in your belly.

The doctors now say she would be a prime candidate for a surgical implant, but that has more tests we need.

Fast forward to now. Medicines are still failing; she takes them anyway in the hopes they will work. I have started college, obtained an IT certificate, and plan on going back. Heaven is still having seizures almost daily. The boys are starting to notice now that they are three, and I have to tell them that mommy is sleepy. It absolutely breaks my heart to hear Caeden say, "wake up mommy." He's trying to help in his own way.

We finally have some semblance of an end in sight. They gave us surgery options to consider; however, there are still hoops to jump through and more time to wait. We still don't have dates set, and I am unable to find reliable childcare/at-home care for Heaven on her bad days. This means I can't work reliably, and thus money has become extremely tight. We are currently pretty much living off of credit cards at this point. We will very soon find ourselves in a financial hole. Money, unfortunately, keeps me up at night and worries me the most. It's expensive just buying groceries, let alone multiple trips to Indianapolis for her appointments.

We got three different surgery options, two lobectomy(s) and a burning of the seizure region. All three come with some serious risks. Nothing has been set in stone, but we remain hopeful that this will help in the future.