The day my world changed

Here we go again. I can’t believe this is my life now. How does a parent ever feel calm or at peace again? I don’t see how I can. I keep searching for the cause, for the reason and of course, the answer. I don’t know that I will ever find the solution to the problem that has plagued me for, almost, the last 20 years and has now compounded. Is there one? No, there is no reason for this. There is no reason for a parent to know this kind of pain or worry on a daily basis. I couldn’t have imagined how I’d feel and yet now I know. He just had another one tonight. This time I saw it from the beginning. Thank God, I saw it all and was able to keep him safe. And also, how awful that I saw it all and will now never be able to get that image out of my head.

My world changed again, in a horrible way, almost exactly 3 months ago. Even now, as I sit here, I am in such trauma over what I just witnessed that I don’t even know what to do with myself. I can’t sleep. I can’t focus on TV. I couldn’t eat anything if I tried and so I will sit and write and try to make sense of what has transpired over the last 3 months that has turned my life upside down.

On November 21, 2021, I received a call that I would hope no parent would ever receive. It was a Sunday and my son was with his Dad, as he always is every Saturday night/Sunday. We just got home from church and I was just getting ready to make my husband his Sunday breakfast. Garritt (my son’s Dad) called and spoke calmly into the phone saying, “Dave had a seizure and we are at the hospital.” I didn’t understand what was happening. What was he talking about? I had heard about kids with autism having seizures and that they usually began around puberty. So before puberty happened I tried to do everything I could to prevent THAT from ever happening. I put him on the strict diets that were supposed to help and followed all the therapies and protocols. Puberty came and went and I thought we were in the clear. Now here we were and Garritt was telling me Dave just had a seizure. I started screaming and crying and shaking. I ran to my husband, Ronnie, and incoherently screamed out what had happened. He immediately grabbed the keys and we raced to the hospital. They ran all the tests and found nothing. Good news. And, also, bad news. No reason means this could happen again. Garritt recounted everything that happened, to us. He was in his car, with Dave, alone and on the way to church. Dave had a grand mal seizure, lasting approximately 7 minutes. Garritt somehow managed to drive his stick shift car, cradle Dave in his arms to keep him from hurting himself, and simultaneously drive him to the ER. After being at the ER all day and Dave checking out, ‘ok,’ we brought him home where he proceeded to sleep a good 20 hours. They say a seizure, on the body, is like completing a marathon. Seeing how it knocked Dave out, I believed it.

I convinced myself, and tried to convince others, that this was a ‘one and done,’ and Dave would never have another. Again, I started to research what could help, I reached out to my amazing warrior mom friends’ who paved the way before me, and I started Dave on all the supplements and therapies that helped them. We brought Dave to the local neurologist and after the EEG she said he had patterns that were ‘eliptiform’, she said it was more likely than not that he would have more seizures, that he had epilepsy and she began talking about the drugs he would need to start. Both Garritt and I shook our heads in agreement, knowing that was not the answer.

Fast forward almost exactly one month later, on December 19, 2021. I had finally gotten over the trauma of what had happened the previous month. It was again a Sunday morning and I had just finished making Ronnie his Sunday breakfast. He was standing in the kitchen acting strange and texting on his phone. I looked at him and asked what was going on. He said, “Dave had another seizure. They are at church. Garritt wants to wait until more people clear out and then we can go get him.” My heart dropped again. So much for ‘one and done.’ We raced up to the church and I ran in. I was actually calm. And then the moment I saw Dave I started balling. Garritt admonished me to, “pull myself together.” I don’t have it in me to NOT feel emotion when my child is suffering. This precious boy whom I carried for 9 months and am so innately connected to, is having a seizure, and I am supposed to ‘pull myself together’ and NOT cry? I was so angry that I was his focus but we all pulled together and got Dave to the car and home to sleep it off.

Fast forward another month, almost exactly, on January 19, 2021. THIS… This one, was indeed, the worst night of my life. Dave had another seizure. Only this time it was on my watch. I foolishly thought there was a pattern to his previous seizures. No matter how odd it sounds, the first seizure was a day after the full moon, on a Sunday, in the morning. The second one was 2 days after a full moon, on a Sunday, in the morning. So here I was bracing myself for the next full moon, 1-2 days later, in the morning. So when January 19^th rolled around (the second day after a full moon) and Dave sailed through that morning fine, I thought we were in the clear. What an idiot I am. My husband was getting ready to leave town to record an album. We had been watching a series and the finale was on. It wasn’t a show I wanted Dave to see and he loved doing his puzzles so we let him keep doing his puzzle downstairs while we went upstairs to watch the show. Over the last few days, any time I heard a chair move, a thump or anything unusual, my heart dropped. If I didn’t believe in PTSD before, I sure did now. I was constantly on egg shells and worried every moment about Dave’s next seizure. So when I heard a thud upstairs while we were watching TV, my heart dropped. I knew. I yelled to Ronnie and he ran ahead of me. He cleared the stairs before I and he peeked around the corner and said, “yep, he is having a seizure.” Ronnie ran to him and cradled him in his arms. What I WASN’T prepared for was all the blood surrounding Dave. I was screaming and crying. I called Garritt and he actually thought I was trying to tell him Dave died, because I was so hysterical. I could see that Dave busted his eyebrow wide open. He busted his lip open. The side of his nose was bleeding and he had bumps and bruises like someone had just kicked the living sh** out of him. I was beside myself. How could I let this happen? What was I thinking? I was thinking I knew the pattern and we were in the clear. That was truly one of the most horrific nights of my life. Suffice it to say, I will never forget anything about that night and all of the events that unfolded.

The next day, I began trying to do whatever I could to ‘control’ the situation, I spent close to $500 buying gymnastic mats to put all over the floor of our house. I bought baby monitors for downstairs and upstairs. We started looking into seizure watches to alert us and we continued to add new therapies to his protocol. Dave’s doctor actually told me at our last consultation, “in my 32 years of medicine, I have NEVER heard of a parent turning their house into a ‘soft cell’ for their child.” I was astounded at that and thought, “REALLY?” He laughed and assured me, “Wendi, if you could control Dave’s seizures I KNOW for certain they would have stopped.” I laughed but truly what other choice did I have? I had to do everything in MY power to protect my baby.

Fast forward to January 28, 2022. This one really threw me. Only 9 days after Dave’s last seizure, he had another. He again was with his Dad and they heard a thud and ran downstairs to see Dave on the floor, coming out of the bathroom, seizing. Talk about being thrown for a loop. We thought every 30 days was the pattern. We were convinced it was around full moons. And we, or at least I, believed that all of the supplements and therapies we had started were bound to work. Now they were increasing in frequency and he was hurting himself. Again, giving himself bumps on his head from seizing on the hard floor. We had to move forward and start thinking about drugs. I did NOT want to go there because Dave is like me, SOOOOOO sensitive to meds. And the drugs had these awful, potential side effects. And I knew kids that were on them, but like I said, Dave and I are the 1%. We always get those effects that make doctors go, “hmmmm.” But I had to now consider doing this. I had to do something, anything, to stop these seizures. We talked to Dave’s doctor and had a game plan. We were starting the last natural therapy but if Dave had ONE more seizure, heavy duty seizure drug route would be started.

Fast forward 9 more days, on February 6^th, I once again got a call from Garritt on a Sunday morning. They had just pulled in the driveway coming home from church and Garritt turned to look at Dave. He saw the signs and jumped in the backseat. He said it was the most violent seizure yet. Thank God, Garritt once again was there to hold him through it. And that was it. Drugs here we come.

To this point I feel like I had been doing somewhat okay. I just did what I always do during horrific trials in my life. I just swallow the feelings and work. I am a workaholic by nature but I definitely also use work to not think about the uncomfortable things in my life. Especially when it comes to my son. I have so much emotion bottled up STILL from his autism diagnosis, let alone from all of these horrific seizures over the past 3 months. I know if I start to let the feelings out, I will lose myself in all of the pain I keep locked away. But 2 days later, I had to start Dave on this drug. I was having awful PTSD about what happened to him as a baby and how I didn’t stop them from harming him. When I went to give Dave his first dose of the drug on Feb 8^th, he looked at me and said, “swallow pill?” And I said, “yes baby, swallow pill.” He looked at me SO trusting and just did exactly what I asked. After I got him set up, I left he and Ronnie in the kitchen (because after the eye busting open incident Ronnie and I never leave his side) and went to my office and started sobbing like I hadn’t done in a LONG time.

So now here I sit in my office, its February 15, 2022, another 9 days after the last seizure. I started getting Dave chiropractic adjustments because I figured his neck has to be jacked up after all of the seizures. Then I started thinking he is always so tense and all of that hard shaking and seizing HAS to be so incredibly hard on his body so I should start massage too. I have THE BEST masseuse, she actually specializes in medical massage, so I was so excited to get him started. He had his first massage tonight and we had JUST gotten home and I was getting his dinner ready. I started to give him his pills. I gave him some neuro mag, which I call his ‘purple juice’. I told Dave to drink. He was just sitting there kind of zoning out. I said, “Dave, drink your purple juice.” He didn’t move and again was staring straight ahead, just zoning out. I said it again, sternly, “DAVE, drink your purple juice.” It usually only takes a second prompting for him to obey but he sat motionless. I called out to him and he was still staring straight ahead. Then he started to turn his head to the left, but in slow motion, again eyes zoned out. I immediately knew something was off. I grabbed a hold of him, (he was sitting at our high breakfast counter, though mats were all around, but I still feared for his safety so I held on tight). Then he started to turn his gaze and cock his neck in an upward motion. I screamed for Ronnie and held on tight to Dave. His eyes started rolling into the back of his head and he started to contort his body and his arms. I held on for dear life, crying and screaming for Ronnie. Ronnie raced downstairs and held on to us. Dave started to seize. Ronnie guided us all to the mat below us and put a pillow under Dave’s head. He continued to seize and his lips started to turn blue and purple. I called Garritt as I was freaked out thinking he was dying. Garritt assured me that was ‘normal’. All I could think was there was nothing ‘normal’ about this F’d up situation that has now become our lives.

After the seizure ended, Dave was disoriented. It took all of Ronnie’s strength to help him up the stairs. I undressed him and put him to bed. After I set up his essential oil diffuser, his pot (in case he vomits), and his air purifier, I settled down in my office to try and process all that is going on in our lives. Autism in itself has been a horror and it still is. Not being able to communicate or converse with your child is something I wouldn’t wish on my worst enemy. And yet somehow it has become the monster I have known for 19 years and I have, for the most part, made my peace with it. In many ways it has brought strange blessings, or rather made me thankful for the little things and able to not sweat the small stuff, or if I do, to forgive easily because everything else is small stuff compared to autism.

In spite of our son’s disability, all of us (all 4 of his parents) were trying very hard to teach him things and help him to be as independent as possible. He was starting to learn a job, and doing so good at it. He was fairly self sufficient in self care and, much to my dismay, his Dad was trying to teach him to ‘be alone’ while he’d run to the store or do another errand. Since November 21, 2021, ALL of that has gone out the window. My husband and I do NOT leave Dave alone for ONE moment. I sit on the toilet while Dave showers. Ronnie sits up with him at night after I can’t stay awake anymore. He is surrounded by gym mats right outside my door when he comes home from school and a baby monitor sits at my desk so I can hear him 24/7. 

I don’t know how our lives can ever be any different. After this, now his 6^th seizure, how do I EVER relax and let my guard down? I don’t. I am a ball of frazzled nerves 24/7 waiting for the other shoe to drop. Two days ago, on Superbowl Sunday, Ronnie and I were watching the game and Dave was right next to us, at his table, doing his puzzle (gym mats and pillows all around him). All of a sudden we heard a noise on the mat and turned and didn’t see Dave sitting there. Both of our hearts dropped and we looked at each other with panic in our eyes. Thankfully, Dave was simply on the mat, on the floor, adjusting it. But this is what I mean. How do I ever have any kind of normalcy? Even if these drugs miraculously stop these seizures, how long it will take me to stop feeling this feeling I have right now? It’s a mixture of tears/dread/worry/stress all mixed into one.  I’ve been out to dinner with friends, ONCE, since November (and ironically Dave had a seizure that night but Garritt didn’t tell me until the next day as he didn’t want to ruin our night out). I don’t want to be around anyone because I’m anxious all the time. And I can’t imagine being able to stop thinking about another seizure long enough to enjoy being out in the company of others. Our lives are forever changed. And yet again, it’s a strange blessing that I am able to keep my son with me always, for the rest of my days. That is a joy I do not take for granted.

So I guess autism wasn’t enough. Epilepsy is now another cross I have to bear until the good Lord comes for us or calls me home. And I also remind myself that it could be worse. Dave could be taken from us and THAT is a pain I do not think I could ever recover from. So I remind myself of all of that and say, “Hallelujah, His grace is sufficient for me.” Although my insides also ache at the same time and cry out, “Maranatha.” I know so many have suffered through epilepsy in their lifetimes and I am not the only one to feel this grief. All I can say to anyone else who understands this is, “I am so incredibly sorry you know this pain…”