aka – The Day a Seizure Unexpectedly Came to Visit!
What, you may ask, is a sucker punch? I’m sure we’ve all experienced them at one point or other in our lifetimes, and will experience more I’m sure. Webster’s New World College Dictionary defines it as “a quick punch delivered without warning; an unexpected blow”.
It had been a pretty status quo weekend, nothing crazy to write about. Living in New England, we got hit with a snowstorm Friday into Saturday so our travels were limited. Sunday, January 8th, was my grandson’s birthday and I offered to make the cake since we were not able to get to the store. My stepdaughter wanted to get him a ‘Bob the Builder’ cake for his big ‘1-0’ so I thought I would attempt it, ha-ha! Sunday morning we got out to church and came home to party with the birthday boy. Overall, Sunday was a great day. The party was on the smaller side, as my grandson is autistic like our son Sam, and they are not particularly fond of big crowds. We celebrated with pizza, cake, presents and then we all settled in to relax for the night. Little did we know how our world would change in a few short hours.
I decided to let myself sleep until 6 a.m. that Monday and figured if I woke before the alarm, great but… I’d set my alarm in case I didn’t. At what I thought was 5:37 a.m. I was awakened by a loud frightful moaning sound. My 1st thought was, oh crap, Dan had a side effect to the new meds he’s on, as he had just changed his nerve pain medicine over the weekend. When I got there, the living room was dark and I realized he had already left for work, which meant it had to be one of the kids. I peaked in Jessica’s room and she was sound asleep; it was then I realized the noise was coming from my son Sam’s room.
Now for those of you who don’t know my son Sam, he is 25, has autism and is pretty much non-verbal (he can repeat things or say a few basic things but any conversation is limited). My heart sank to the floor in my half sleepy stupor. When I realized the noise was from him, I turned his light on and was not prepared for what I saw. He was groaning and thrashing in his bed. I didn’t know if he was having a heart attack or what, I had never witnessed anything like it! At first I thought he might be having a bad nightmare – you know, sometimes those can trigger a groan or yell in your sleep. I tried to wake him but realized he couldn’t come to. His whole body was jerking, his eyes were rolling around in his head and he was gasping for breath and gurgling. This went on for minutes as I prayed ‘Jesus’, called Sam’s name, and called out for my girls to call 911. As I watched him gasp for breath, his life flashed before my eyes; my thoughts were: ‘Lord, you can’t take my son’ and ‘Sam, come on, hang on’. One of my girls brought me the house phone as I had asked but, in our nervousness, it fell to the floor and the battery fell out. She then went and got my stepdaughter, who called 911. By this point, I realized it was probably a seizure but still had no idea if it would stop. After several minutes, the seizing finally stopped. Sam’s eyes rolled around in his head, looking like a person who was blind. It was like he was looking for me, because he could hear my voice, but he couldn’t ‘see’ me, pretty scary stuff! It took a few more minutes for him to fully come out of it and come to. He grabbed his blanket to pull over his head, as if to roll over and go back to sleep.
It was about this point that the ambulance and police finally came. Poor Sam wasn’t quite sure what was happening! Suddenly there were 5 to 6 people in and out of his bedroom, between the police officer and the 2 ambulances. It is all such a blur as it seemed like one by one, they would ask what had happened and specifics about Sam, each had a job to do. I remember this gal telling me I would not be able to ride with Sam in the ambulance. I was like, “but you don’t understand, he’s non-verbal and has no clue what just happened or what is going on”. She was like, “well, you can sit in the front of the cab, but there will be no room in back”. With all the furry of trying to contact my husband, throw clothes on, make provision for Jess and all, all I could do was pray, barely. My stepdaughter was amazing filling in for me as I went to get dressed, being sure Sam had his coat and shoes (it was 5 degrees out that morning). Jess went in and comforted my grandson, who was a little confused on why all these people were in his house at this time and where was uncle Sam going? All I could think of was “Lord, please comfort my son, and take care of the rest of my family looking on”.
One of the ambulance drivers told me I could sit in the cab while they got Sam settled in back, which I reluctantly did all the time praying, “Lord, you know what my son needs”. Before we left the house, this older male med-tech showed up and took over for the gal that told me I wouldn’t be able to drive with Sam. He was amazing with my son! As fate or faith would have it, he had the gal take the vehicle he came in and he was to be the one to treat Sam in the cab. While he prepped Sam, he said something like, “maybe his mom should come back here and sit with her son, it would probably comfort him”, I wanted to hug him! You didn’t have to tell me twice! (smile) I went in the cab with Sam and was able to keep him comforted, as he was strapped to this bed, traveling to who knew where with these strangers.
Once at the hospital, Dan had arrived before us. We could see him from the window but they wouldn’t let him see us until we had a room. After we settled into a room, Dan joined us. I tried to remain strong for Sam’s sake but was so relieved to have my love by my side! The hospital ran a battery of tests to be sure Sam was in no immediate danger; his CT scan, blood-work and EKG seemed normal. They wanted to put him on anti-seizure medicine but had reached his neurologist, who asked them to wait until he did the EEG later that day. We left the hospital mid-morning and went home where Sam took a well-deserved nap before going back out to see his doctor. Thankfully Sam has a regular neurologist who regulates all his meds for his autism/anxiety and he could take us in and do an EEG right in the office, which I was quite impressed with. (When Sam was much younger, he had to have a couple EEG’s which were done in the hospital and the wait was crazy). In any case, the doctor gave us some medicine in case Sam had a grand-mal seizure again before we got the results. We left with an appointment to go back in 2 weeks to discuss our next plan of action. We were instructed on what to do again if Sam had another seizure: try to be sure he was in a safe place, preferably laying down on his side; loosen any clothing around his neck and be sure there was nothing dangerous around that he could get hurt with; note the time and if it lasted more than 3 minutes, use the medicine we had been given; among the basic things. That night we got a call from the neurologist that said the preliminary tests showed some brain activity on one side of his brain suggesting that the possibility of a seizure happening again was high and we would further discuss possibilities at our follow up meeting. If needed before then, the doctor was just a phone call away.
By evening, we were all fried. I had a hard time keeping my eyes off my son. The sight of his flailing that morning, his eyes rolling around in his head and then searching for me as though blind, kept replaying in my head. Dan & I both knew I needed to stay with him through the night. I’m not sure what sleep was that night as every little move had me wonder, was it going to happen again? The next morning it came time for Dan to go to work and I had such a migraine from being sleep deprived, I asked him to call out to give me a reprieve. After a couple hours of much needed sleep, I ended up going in to work for a few hours; I just needed to have some semblance of normalcy.
The second night I asked Sam if he wanted me to sleep with him again or to go in my own room; now you must know, there are some things Sam is pretty set in. If you ask him a question and give him a couple options, he will typically pick one. What we usually do is stir it up. We will ask him a question one way and then rephrase it. For example, ‘do you want chicken or hamburg?’. If he doesn’t care, he’ll just say the last thing you said. If we want to be sure, we’ll switch it up and say, ‘do you want hamburg or chicken?’. If he picks the same thing both times, we know he knows what he wants. If he just says the last thing, he doesn’t care and could do either. Well, when I asked him if he wanted me to stay with him or go to my room, he wanted me to stay with him. I could see in his eyes that he still wasn’t sure what had happened and needed the comfort of someone close by. That night I lay with my son as we again listened to comforting music which swept over both of us. The words to the songs were those of love and comfort, of a loving God who was keeping us.
Come the 3rd night, I decided to get a baby monitor. I figured that maybe I should move to my own room as I had again battled a bad headache from sleep deprivation. I thought with the monitor, I could at least hear if something happened and be available. Well, that was a joke!! And a bad one! Ha-ha. I showed Sam beforehand how I would be able to hear him if needed, trying to comfort him. The monitor squelched all night, no matter how I set it! With every little noise, I was up to check on Sam, which I might mention, never seemed to sleep that night. If he did, it only seemed like moments. By morning I was so ready for night to be over!
The next night Sam still wanted me to be with him. I didn’t care what anyone said around me, if it meant both of us getting a little sleep then it would be so worth it. That night the most awesome thing happened. As I lay there praying, with my arm around my son, I was asking God to heal him, comfort him and give him rest. I am not sure how you may or may not talk to God but, I have this personal relationship with Him, where I can just be real and share my heart with Him. I was telling Him how torn I was between all my responsibilities with my husband, the rest of my family and my son. I was asking Him if I was making a mistake by being here for my non-verbal son, who can’t tell me from Adam what he is experiencing. I was thanking God for His comfort to me the past few days because honestly, I think I was in shock. I didn’t know how to pray. I didn’t know how to feel. My heart just went out for my son who was traumatized and yet, through it all, I could feel God’s comfort in my life. That verse about in my weakness, God being my strength was such a reality in those days. He was carrying me and comforting me through this whole ordeal. That night, as I lay there praying and thinking of the past few days we had been through, I could feel God comfort my heart. I was reminded of many years earlier, in this very room, comforting my oldest son in a similar way. It was as though I heard the Lord say to me ‘you are right where you need to be’! ‘Just as I have comforted you in the Spirit, you are being for your son in the natural’. It was as though God had put a blanket of comfort over both of us as we lay there, listening to worship music; His Spirit of peace and grace ever so present, it had to be the best couple hours I had all week.
You see, there are some who would say, if God is so loving, why would He let something so tragic happen? The truth is, through the years, I have come to understand the fallen world we live in and there are 2 things I know for sure: 1) God is a good and faithful Father who has come to bring life and life abundantly and who still heals today (whether it be supernaturally or through the wisdom of doctors); 2) we so have an enemy who rules this earthly realm, known as the devil, and he has come to steal, kill and destroy. After many years of trials, I have begun to ask myself questions to realize where things come from. If they have the thumbprint of stealing, killing and destroying on them, then it is not from God. This definitely had the thumbprint of the enemy on it, he wanted to take my son’s life but God in His graciousness spared us. I know God works all things together for good to those who love Him and who are called according to His purpose. I knew that even though this was meant for evil, God would use it for good. As I lay there that night praying, I felt God say that He would use this in my life to understand others going through such trials. There would be some who would say, ‘get over it and move on’ when a person faces a trauma but there are times it takes time to get through things. Not only is God there to bring us through trauma and comfort us and bring healing but, He also brings people in our lives who understand that. The picture I get even as I am typing this is the difference of a bull and a butterfly. The bull would say, ‘just get over it, what’s the big deal?’, because they haven’t felt the pain of the trauma. The butterfly on the other hand has felt the wind of the pain and knows that it must maneuver carefully to stay alive.
I am so thankful for God’s hug that night and repeatedly in the past couple weeks. I’d like to say we’re out of the woods but the reality, as some of you know, is that after meeting with the neurologist, Sam’s chances for more seizures is pretty high. We have opted for meds for this season, for the safety of our son and have gotten a camera to monitor his night hours so we can all rest a little more.
I must say, I have a greater compassion for those around me who have and are walking this path. When I was sucker punched, it literally took my breath away, as I never in a million years would have imagined this. Now that I have regrouped, I’m back up and fighting! My faith has gotten even stronger through this, knowing how much my Papa God loves me and has brought comfort to us through this. I will continue to hold on to a day of healing. In the meantime, we do the practical things that need to be done until the healing comes. God is not mad at me and I’m not mad at Him! He still heals today and though the enemy raises his ugly head to try to destroy life, I’ve read the end of the book and I know who wins! Today I choose to run to daddy’s lap and let Him fight my battles. Funny how the enemy convinces us to run away from the only one who can bring healing, wonder why that is? “I would have lost heart, unless I had believed that I would see the goodness of the LORD in the land of the living. Wait on the Lord; be of good courage, and He shall strengthen your heart; wait, I say, on the Lord!” Psalm 27:13-14 NKJV
Today my heart goes out to you if you have been sucker punched. Breathe… and breath again…and let God hold you, He’s our comfort. We may not understand all that is happening and we can’t even predict how things will turn out but I pray you run to the one who still heals and comforts today. Let Him bring people in your path to breathe life back into your windblown sails… let God strengthen your heart, you are amazing!!