Today is National Purple Day for Epilepsy awareness. We are well aware of Epilepsy in our home because of our son, Aaron. Aaron is 33 years old and has had uncontrolled seizures since he was in the first grade. We were a military family living in Germany when Aaron unexpectedly had his first Generalized Grand Mal seizure.
It was a Sunday afternoon when Aaron fell back into my arms, thankfully, and began seizing on our kitchen floor. I had no idea what was happening. I remember seeing blood coming from his mouth…later learning that it was because he had bitten his tongue…and I remember yelling for Gary, who rushed into the kitchen and began trying to help Aaron while I called an ambulance.
The ambulance ride to the nearby military clinic…then another ambulance ride to the German Kinder Clinic, which is what we called the children’s hospital…was all a blur. Aaron spent several days in the hospital, where the German care was good but the language barrier and the differing medical methods and practices were very difficult. But the thing we did understand was the diagnosis of Epilepsy.
Over the years we’ve tried lots of drugs and other treatments, including hospital stays for video EEGs and surgery to have a VNS implanted, but the diagnosis is the same…Intractable Generalized Seizures.
Intractable – meaning not easily controlled or managed.
Generalized – meaning that the seizures quickly involve the entire brain instead of one small part of the brain.
OK, lesson over.
Because what I really want to do is to share with you the incredible strength and resilience of our Aaron…and of many others I know who struggle with seizures due to Epilepsy or other causes. And to also share the incredible strength of God that He gives when needed the most.
This past Thursday night, Aaron had a seizure shortly before midnight. I heard it on the baby monitor that sits on our nightstand beside our bed. He had another just after 2:20 a.m. And yet another seizure at 6:45 Friday morning.
He got out of bed not too long after that, heading to the bathroom and turning on the shower right away. He cleaned up while I stripped his bedding and started the laundry process. Soon Aaron was in the kitchen, telling me of his bad headache and asking if he could have his coffee.
He spent most of the morning here, as is so usual after these clusters of seizures.
When he was more awake and feeling better, and after eating a little, he wanted to go with me to pick up a few groceries. He was happy to come home with ice cream and cashews and sparkling water, and happy to have supervised Mom in buying what she needed to make for his supper request…Lasagna!!
Aaron went right back to bed when we got home, in his for-real bed now since part of his bedding was back on. And at 3:33 – since Aaron appreciates such precision…he had the hardest of his four seizures. Yet amazingly enough, within 15 minutes, he was out of bed…though slowly…and was happy for me to finish putting on all of his sheets and blankets.
Aaron always helps me change his sheets, but I certainly didn’t expect him to do that this time. I told him to sit in his chair, but he didn’t acknowledge me at all as he stood by his bed, ready to help.
This is what I find so amazing about Aaron. If I had been the one just finished with my fourth seizure, I imagine that the last thing I would want to do would be to help put sheets on my bed. It was so heartbreaking for me to watch him stand there, part of the time with one hand on his wall and the other on the headboard of his bed, completely out of it. Then he turned and bent over, just staring at nothing. He couldn’t talk well at all, but when he saw a wrinkle in his cover, he reached out to correct it as quickly as he could. I smiled as I saw his autism come out even through his very fuzzy brain.
He stood there by his bed during the whole bed making process. He tried so hard to function…to think…to speak…to move. All of it was such a demonstration of how impacting seizures are on the brain.
And it was also a commanding demonstration of how tough and brave Aaron is. How he fights to keep going! How much he wants his world to be his version of normal, even though it is anything but that.
He only had one piece of lasagna for supper. That’s because he couldn’t taste food…another sad side effect of seizures. His hand and mouth tremored, too…yet another side effect. Then there’s the drooling. And on the next day, extreme dizziness and needing help to walk because his legs didn’t work right for a while. Even on Sunday, his sense of taste hadn’t fully returned.
Medicines that help seizures have side effects. What is what, we don’t always know. But decrease or stop the meds, and the seizures increase. It’s a complicated situation.
It’s a reality for far too many people…far too many families.
But I want to answer the question that Aaron asked me on Saturday as he talked about his seizures. He sometimes verbalizes his thoughts in profound ways, especially when he is thinking about being born to live a life with seizures.
“Mom?” he asked. “What went wrong with me?”
A heart-piercing question from my son.
So to Aaron I said simply, and say here as best I can:
Dear Aaron, nothing went wrong with you at all. God made you wonderfully, as He tells us in Psalm 139. You are fearfully and wonderfully made. You were crafted by God. I don’t know why you have Epilepsy, but I do know that God loves you and He has allowed this for a reason…one that we don’t understand right now. But God loves you, and so does Dad and so do I. We think you’re strong and amazing. Even on our most frustrating days, and yours, we know that we can trust God because we know Who He is. He is Sovereign, which means He is in charge and He knows best. We’re glad you’re our son, and we will always be thankful for our Aaron.
“And we know that ALL things work together for good to them who love God, who are called according to His purpose.” (Romans 8:28)
6 thoughts on “What Went Wrong?”
Thank you for sharing your story. VNS didn’t help my son either. Epilepsy is so debilitating. You can be anywhere at anytime and all of a sudden a seizure happens and you son is down……It breaks my heart…. Do you know if the FDA has approved the Deep Brain Stimulator? We support the Epilepsy Foundation. I PRAY someday they can find something that helps those who suffer with this a cure. God Bless you all.
Thanks for reading, Nina. I’m sorry, though, that you understand this pain of Epilepsy. I just looked online and saw that the Deep Brain Stimulator has been approved for Parkinson’s. I’ll ask Aaron’s Epileptologist about this at his next visit. God bless you and your son as well!
Oh Patty, it broke my heart reading when Aaron asked what went wrong with me!! Sweet woman of God that you are knew just what to say! How well I remember seeing his kindergarten picture with his bright eyes sparkling. You all are in my thoughts so often. Love, Cherry
Thank you, dear Cherry. God gives us grace…and words…when we need them, doesn’t He? Would love to see you someday! Love you!
Patty, I love Aaron. I still remember when he and Andrew would come to our house and play with Brian AND the many times you had Brian over to your home. We all still have a very special fondness in our hearts for Aaron. Even though our time together here in AZ was just a short part of Aaron’s life, and yours, we still cherish our memories of your family.
All your family members are so good with Aaron and such examples of Godly love. My heart broke to hear Aaron wondered what went wrong and he must really be tired of all this!! But your reply was so perfect, so Godly, and straight from your precious heart. As you said earlier, God does give us the words when we need them but it helps to be in a relationship with Him and open to the message He provides.
You are an inspiring woman of God. I love you!💝 Thank you for sharing your experiences and thoughts. I always get something special from your blogs. May God keep you in His tender care and give you strength.
I’m so sorry it took me awhile to approve this message, Christine, and then to respond. I made a wedding trip to Houston and life got a little muddled and busy. How well I remember those precious years in Arizona, and how special and kind your dear family was to all of us – but especially how much it meant for you guys to love and welcome Aaron into your hearts and homes. Brian was such a good friend, so understanding and kind to Aaron. We’ll never forget that. Please tell him that for me. Your family God used to bless and encourage us at times we needed it the most. Thank you!!!! I love you, too! And I thank God for you!