Living with Epilepsy

Part two of Nathan's Seizures. Or basically his 2nd seizure at home...

We didn't leave Nathan's side for about 7 weeks after his episode in October. Not even a quick trip to the store or redbox, even if Darin was home to be with him. A boy who has just hit that milestone of not having to go to the grocery store with his mom, does not appreciate being restricted again. Actually it was just over Christmas vacation that we have let the boys babysit the girls while Ken and I saw a movie at the theatres that are just a few minutes from our house, literally it takes us under 5 minutes to get there.

I have to admit, Ken and I were happy to have a little freedom too! It was scary to take that leap of faith and leave him for the first time. We were so giddy, it was crazy. Apparently we enjoyed it too much because we saw 3 movies by ourselves over the break, and we went on several short shopping trips too. We started to forget that inside our son's brain is a ticking time bomb that can go off at any time.

It's not like we ever completely forgot, we would always test all the kids on what they are supposed to do if Nathan had a seizure while we were gone. Obviously, we never thought it would happen--just a reminder in case that one in a million chance happened in the next hour and a half. We weren't brave enough to go to the Alamo movie theatres (they are 30 minutes away and a 4 hour experience) until we knew Nathan would be with his friend and his parents for one of the evenings. But we had totally relaxed.

In fact, we had relaxed so much that the night before he had his latest seizure that we had put the girls to sleep and had left the boys to continue their Harry Potter Marathon while we saw our 3rd movie. We had put our phone on vibrate in the theatre (which I am sure I will never do again!) and we missed a call from them and didn't realize until after the movie was over that they had called. Whew! At least Nathan didn't have a seizure then.

Nathan had his latest seizure on Wednesday, January 4th at 4:00 in the morning. We were so close to being the most neglectful parents ever. I have to keep telling myself, that I can't focus on the "what ifs". But seriously, "what if" something terrible happened to your child and you weren't there for them, or for the other child who was caring for them??? I am so grateful that didn't happen to us, I don't know how I would be able to get past the guilt.

This time Nathan had woken up to go to the bathroom in the early morning. As he was going back to his bed, he started to feel the tingling feeling in his leg that is a sign to him that he is about to have a seizure. He called out for help, this woke Darin up. Darin said he got to their bathroom door just as he heard Nathan crash to the ground. Ken and I were asleep downstairs in our room. The funny thing is that my alarm clock that rarely ever works went off at this random time. It was playing ocean sounds which is also random. Really this clock is so unreliable that I never use it. I woke-up dreaming of us at the ocean and Darin screaming out for help to me because he was stuck in a riptide. When I realized that what I was hearing was his screams over the monitor I woke up with a huge start. This is actually big for me because I rarely wake-up in the middle of the night, even when we have babies who cry. Ken always hears them first. But this time we woke-up at the same instant and ran upstairs.

Nathan's seizure stopped right as we got up there. We opened the door to find
Darin kneeling over his brother holding him. Darin had straightened his entire upper body and even grabbed a robe that usually hangs on the wall and put it under Nathan's head. He stayed with Nathan the whole entire time and did everything we had trained him to do: Roll him to his side, make sure he can breathe, protect his head, and call for help.

When we got to the boys Ken took over caring for Nathan and I took Darin into their room and got all the details and helped him calm down. He was so scared for his brother. He said that he meant to say Help, but instead he just screamed Ahhh! Ahhh! Ahhh! What a sweet, loving brother! I reassured him that he did everything perfectly.

By this time the girls had also woken up and wanted to see everything. We carried Nathan to our room while he was still in the unconscious part of it and set the other kids up with cartoon in the family room. Darin, Rose, and Ginger weren't about to go back to bed after that. Actually Ginger insisted on being with me and we couldn't really keep her away.

When Nathan started to come around again (this is the painful phase) he didn't seem in quite as much pain. He was still in alot of pain and was begging us over and over to take him to the hospital and to give him the medicine. Unfortunately the only medicine we have is to stop the seizure and it is an emergency dose. We are only supposed to give it to him if he starts to have a third in a short period of time, or if his seizure lasts longer then 5 minutes. He couldn't understand why we weren't helping him. He also was begging his Dad to give him a blessing so that he would never have a seizure again. That was also really hard to go through. He was in pain and begging us for things to help and our hands were tied. Ken did give him a blessing of comfort and then we prayed together that he wouldn't have another seizure this morning. We tried to explain that all we could do was ask Heavenly Father to help him, we couldn't demand it and make it happen.

I love my son so much! I hate to see him in so much pain. Physically, he recovers from it pretty quickly within 3 or so hours but the emotional recovery doesn't happen as fast. I felt especially bad for Nathan because he felt as though he knew when they were coming on so he would be able to take care of himself before it hit. Like since he knew, he would be able to call for help and get on the ground and protect himself. That's a pretty big expectation to have of yourself as you lose control and I've been telling him not to worry about that. But, that doesn't matter he had planned that out in his head. So to have a seizure again, and to not even have control over the little bit he had wanted control over is really hard.

It's so hard to see this as parents. Isn't it hard enough to go through middle school without wondering if you are going to fall down in the middle of the hallway and look freakish. He had a scare about the tingling in his leg before Christmas break and really thought he might have one as he was walking to his class. He came home from school frustrated and terrified. It terrified both of us too.

That's what life is like living with epilepsy. You get scared about lots of little things that don't necessarily mean he had a seizure or will have one. The tingling in his leg is obvious, but there are also times when we see an ambulance drive or anytime the phone rings and he isn't right by my side. Today I got freaked out from the nurse wanting to update her records because I let her know that he had another seizure. She called me and I could see it was from his school on the ID but no one was there when I picked it up. After a few seconds of saying hello. I hung up and called the school and got a busy signal, while the nurse was calling me and getting a busy signal. Finally I stopped and waited a minute and the nurse called back. But during that time I was completely scared at what she might say. She wasn't totally clear either and kept talking about Nathan's treatment plan so I finally interrupted her and had to ask if Nathan had a seizure or not. He didn't and was fine, but I spent the rest of the day crying off and on.

There are also stupid silly moments where I work myself into a panic that are totally non-sensical. Like I was making Ken's favorite dinner one day in December and realized this was the first time I had made it since Nathan had a seizure in October. Then I realized that I had actually made this dinner the day he had his last seizure. Nathan never even got to eat it, and I know that the smell of it in the kitchen isn't causing his seizures or anything. But all the same, that thought paralyzed me for 5 minutes and I had to hug Nathan and check and make sure that he was all right.

We really hope that the children don't notice our panic and Ken and I have really been trying to make life totally like normal. The routine helps us too.

Anyway, Nathan recovered after a couple of hours. I cuddled him and Ken massaged his tingly leg for over an hour to soothe Nathan and calm him down until he fell asleep. That's another thing, Nathan thinks if he can stop it from tingling then he won't have a seizure. We'll have to address that later though. Rose and Darin slept on the couch and were late to school the next day. And Ginger slept in our room until Ken moved her up to hers. The kids were understandably very anxious and wanted to sleep with us the next few days. It really is rough on the whole family. At the same time, they were incredibly nice and loving towards each other. They usually are, but they have been extremely so. Rose took Ginger under her wing and mothered her, it's actually still going on a week later.

Darin who did everything perfectly to care for his brother didn't even realize what he did. We kept telling him how proud we were of him and he kept shrugging it off. So finally I asked him if he even knew what he did and he said no. Then I asked him what he remembered. He didn't want to talk about that. So I said, do you think you just watched from across the room and screamed while Nathan was having a seizure. And he said yes. My poor son, what a weight to have on his shoulders that he should have done more and was too scared to do it! Ken and I keep telling him exactly what we saw when we opened their bathroom door and how he had precisely taken care of Nathan. You could really see that he had rolled him to his side and lined his spine up, because normal seizure position (not to mention from a fall) the person looks totally broken and unnatural. Darin still doesn't remember but I can tell he feels better. It has been a good experience for him to realize that the Holy Ghost will help you in times of need too.

That night as Ken was putting all the kids to bed I said a prayer for Nathan. Nathan had to go to his bed too (part of the making it normal, and not wanting to show we are scared). I'm not really like this normally and I was thinking I would just pray that he would be safe. But it turned into an amazing experience. I started off thanking my Heavenly Father that Nathan was safe but it snowballed into thanking Him for all of the tender mercies he had given me that day, that I woke up, that Darin knew what to do, that we were home instead of at the movies, that someone called and offered a random service not knowing what we had been through, etc. I truly meant to ask for everything I wanted for Nathan but instead I was so totally overwhelmed with an enormous amount of gratitude and realizing that even in our toughest moments we have been protected. And how much my Heavenly Father loves me, just like how I love my sweet son. I could see that I was like my son, in pain and unaware of a loving parent by my side who wanted to take the hurt away. It was very humbling and comforting to know that I wasn't alone. I cried so much during my prayer that Nathan came down to see what was going on with me. He finally broke down and told me all that he was feeling too.

All day long we had tried to talk to Nathan. He didn't want to talk about his feelings. He also said he hated talking about his seizures. Actually that part scared me so much that we set up an appointment with a good therapist that we know. This is such a hard thing for him to deal with. It was sweet that Nathan said that he only likes to talk to us, but we just feel like he may need some help dealing with it. If he doesn't that's fine too, she is a good therapist who would tell us that too. She would also tell us if Ken and I are the ones doing things to drive him crazy.

I finally got ahold of the Neurologist too. It wasn't very comforting that I left 4 messages (I restrained myself to only one a day) and no one was calling us back. I'm also very uneasy that they didn't have the results of either of his MRI's in there system. I could have screamed at the nurse who said the Dr. gave you an order for an MRI last January and we are still waiting for the results, have you gotten it done. But I didn't. How you lose results to $15,000 worth of tests is beyond me? I refused to get off the phone until she talked to the doctor and came up with a what's next plan. I was on hold twice for 20 minutes each time. So, what's next... who knows. But until then we have about 4 appointments to go to for different tests and we meet with the Neurologist in a week.

I have to wonder if one day I will write a simple blog post that just has a passing mention of a seizure Nathan has had and moves on to blah, blah, blah. I really hope his seizures don't become that routine. Then again it would be nice if I didn't cry 5 times a day either, when technically we're fine.