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Josh and Amy Hethcox – Live Deeply

We’re Josh and Amy Hethcox, and this is how we’re living deeply.

JOSH: “Our son Nathan had just completed his first day of 9th grade and was at the orthodontist for a routine visit.   When the ortho team was done working on him, they sat him up in the dental chair and he started convulsing.  The next thing we knew he was in an ambulance, sirens screaming and lights flashing down the road.  We never imaged how our world was going to be turned upside down that day.” 

AMY: “We called 911, and when EMS arrived, one of the EMTs told me I could sit in the front of the ambulance. ‘Ma’am, you need to have your seat belt on and buckled, because we’re getting ready to go,’ he told me. I said, ‘Okay.’ Then he said, ‘No, we’re going to GO!’ They thought Nathan was having a seizure and a stroke at the same time, so we were flying through traffic trying to get him to the hospital. I just remember thinking, ‘I can’t believe this is happening.’ When we got there, the EMT started trying to tell someone at the ER about Nathan, and the guy said something to the effect of ‘Yeah, yeah, yeah.’ The EMT said- ‘Wait! You’re not hearing me, this one’s different!’ I must say that I panicked a little. A friend from college who is a physician’s assistant happened to be on duty. She immediately came over and spoke with us. We prayed, and I knew I had to stay calm. The Lord gave us a peace that we would come to rely on in this journey.” 

JOSH: “Both of our children were adopted from Russia, so we had no real significant medical or genetic history for them. When Nathan was in middle school, he’d passed out just sitting in class at school a few times. We didn’t think much of it at first but ended up going to see a friend of mine, who’s a pediatric cardiologist, for an evaluation. He diagnosed Nathan with neurocardiogenic syncope. So we thought we had it figured out: ‘Okay, he’s going to pass out sometimes. No big deal.’ This incident at the orthodontist signaled there was more going on than just syncope. Later, he also diagnosed Nathan with a condition called POTS.” 

(2/4) JOSH: “A few weeks later, Nathan had a similar incident at home. He fell to the ground from a standing position, ended up shaking a lot, convulsing. He was awake and alert. He couldn’t make it stop and it hurt- he could tell us that. His neck and head got stuck in certain positions and he couldn’t move. We let him go through it for about 15-20 minutes, then felt like he wasn’t getting better. So we called 911. They took him to the hospital again. This time he stayed for eight days. They never could figure out what was wrong, but he kept having similar issues in the hospital. He would have these very dramatic movements where his body would contort and he would get stuck in positions for 15 seconds to a minute, and it was very painful. It was a really hard time- a son in the hospital with an unknown condition and the doctors couldn’t figure out what was wrong.’ 

AMY: “It got to the point where we couldn’t have the hospital door or blinds open. Nathan would startle every time someone walked by the door. They placed pads on his hospital room floor because he kept falling out of the bed.  The verse I kept holding on to was ‘My God shall supply all your needs according to His riches in glory in Christ Jesus.’ Every need we had, He met. I would wake up and think, ‘I don’t know how we’re going to get through the day.’ But we always did. God always provided.” 

JOSH: “After eight days, they discharged us. It was the beginning of October, and at that point we kept him mostly home for school. You never knew when he was going to start having one of these episodes, which kind of scared people.” 

AMY: “Nathan went to CAK, which was a Godsend because they allowed him to do a hybrid model where he did a couple of classes at school and then the rest at home while we tried to figure out the best way forward.”  

AMY: “In late October we went to see a pediatric neurologist at Vanderbilt Hospital. Even there, Nathan had issues. Coming off the elevator after going up, he’d pass out and be on the floor for 15 minutes. (Going back down it was more like two and a half hours of episodes!) Nathan’s neurologist has been such a blessing. That first meeting, she watched Nathan struggle and responded with instant compassion. She got on the floor with Nathan, looked him in the eye, and said, ‘We’re going to walk this road together.’ She spent over two hours with him on the floor that day.” 

JOSH: “We’d actually made the appointment three months earlier, long before these more serious incidents, hoping to get further insight on Nathan passing out at school. So it was really God’s hand providentially at work. This ended up being exactly who Nathan needed to see, for reasons we never could’ve foreseen when we made the appointment! She worked for months to figure out what was going on with Nathan, but there were no answers. Finally, in April of the following year, the neurologist told us that in May, she was going to an international pediatric neurology convention in Belgium. She said,
‘Nathan, I’d like you to make a video talking about how you feel when you have these episodes.’ Amy and I told her we also had video of what the episodes looked like, so we gave her that too. She said, ‘I’m going to take this to this meeting and see if anyone has any ideas.’ When she came back, she said someone had an idea of what it might be. The plan was to treat it like that and see what happened. She put Nathan on a drug and told him if it was the suspected condition, he’d feel better within 48 hours. Sure enough, within 48 hours, he already felt better. That helped unravel what was going on the whole time. Almost a year after his first episode, he was diagnosed with a rare genetic condition called PKD (Paroxysmal Kinesigenic Dyskinesia). Its nickname is The Startle Disease, and once we heard that, we started putting things together. One of the reasons it’s called The Startle Disease is because people startle so easily.” 

JOSH: “We started realizing that things he wasn’t expecting, maybe a car horn or another noise, would trigger Nathan’s episodes. Nathan’s muscles would start to contract, make movements, and he would get stuck. Then, he would pass out, startle, and start all over again.  The PKD, POTS, and syncope were all playing off each other. Once we understood how his multiple conditions interacted, we were able to focus on prevention of his episodes. That whole freshman year, watching the episodes and the pain, not having answers, was so difficult. It required changes to our daily living. Our downstairs playroom became his bedroom. We put his mattress on the floor with a couch on one side and a chair on the other, creating a safe space for him to sleep.  We didn’t want him to fall off his bed and hurt himself during an episode. We also placed a video monitor in his room so we’d be alerted if anything serious happened when he was sleeping. Even when he wasn’t sleeping, we had to place mats on the floor in front of the couch so that if he fell off, he’d land on them. Sometimes, he didn’t have the ability to walk. He would have to army crawl or we would drape him across our back to move him. It was just that debilitating.” 

AMY: “Every day it seemed like I’d wake up and say, ‘God, we’re not going to be able to do this if you don’t do this with us.’ So many times, God just answered the cries of our hearts.  Maybe we hadn’t even spoken the words, but He knew intimately what our needs were and answered in ways that made it obvious it was Him. For me, it was a constant reminder to trust: ‘I will provide, I will always take care of your needs.’ He always gave us the strength, and that’s what resonated with me. A friend of mine looked back on all this recently and said, ‘There was only one day where you looked exhausted.’ I laughed and told her, ‘Well I was exhausted everyday.’ She thought I never seemed frazzled, even though I often was. God always gave the strength we needed. We look forward to sharing the rest of our family’s journey with you next week.” 

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