Seizures have been a part of Aaron’s life…and ours…since he was in the first grade. He had his first seizure at home on a Sunday afternoon, out of the blue and utterly terrifying. God was so good to let me be standing right behind Aaron when it happened there in our military apartment in Germany. I was able to catch him. If not, he would have fallen onto the hard kitchen floor and received a serious hit to the back of his head.
His seizures have morphed over the years, as seizures do, seeming to eventually bypass all the medicines and treatments that can be provided. The majority of his seizures occur in clusters during his sleep, most often at night. These clusters carry their own dangers, one of which is SUDEP – Sudden Death by Epilepsy. Those words from his epilepsy doctors over the years always send a chill down my spine.
Aaron has occasionally had drop seizures here and there. A drop seizure happens when Aaron is fully awake. They hit suddenly, with no warning to us. Aaron will fall either forward or backward like a downed tree, not able to break his fall.
A few years ago, he began having more and more of these drop seizures. He sustained significant injuries. Cuts, scrapes, bruising, stitches, a fractured tooth that had to be pulled, and very hard hits to his head.
Finally, on March 9, 2019, Aaron had a drop seizure on our stairs. He had walked up a couple steps, then fell backward, and hit his head on a metal file cabinet handle. He ended up with 8 staples in his head. It was awful!
When we got home from the emergency room and checked our mail, there was a letter from our insurance company approving Aaron for the new pharmaceutical CBD oil, Epidiolex. We had experimented with over-the-counter oils from good sources but had no success. His Epileptologist couldn’t provide any guidance for those OTC oils, legally. As soon as the FDA approved Epidiolex, Dr. Lee put in our request for approval. Now here it was, on the same day that Aaron had fallen…a visual and sad example of why we really wanted to try this new drug.
Dr. Lee was able to oversee Epidiolex since it was FDA approved and obtained through a prescription. Over the next few months, we adjusted Aaron’s dose and tweaked another medicine and waited to, hopefully, see positive results.
And we did! Aaron’s drop seizures totally stopped! We were elated, and soon began to relax. Our fear over those horrible and dangerous seizures slowly went away.
Until this past Thursday.
Aaron and I delivered for Meals on Wheels in the morning. We enjoyed lunch at a cute Mexican restaurant. Then home, where Aaron took a nap…and had a seizure while he slept. This is nothing uncommon.
Later, as I was getting supper on the table, Gary had just come into the kitchen. He was standing right beside Aaron when suddenly Aaron lurched and went into a seizure. But instead of Aaron falling into the table and a chair, and landing on the floor, Gary was able to catch him. This was truly from God, that Gary was there beside Aaron instead of across the room. We were so thankful!
We got Aaron safely on the floor. Such disappointment filled us both!
Almost two years since a drop seizure, and now this.
We hurt so for Aaron.
And I felt that familiar fear. It had come back.
But I also felt something else. I felt God’s peace pushing back on the fear. I forced myself to focus on God…His love and His plan for Aaron, and for us. That knowledge was the best push-back on the fear that threatened to fill me.
I also thought about Mary’s response to the angel when she learned of the very hard path that God had chosen for her…the path of unwed pregnancy in a time when she was no doubt shunned and gossiped about and disbelieved.
Mary said, “Behold, the bondslave of the Lord; may it be done to me according to your word.” (Luke 1:38)
Total submission.
Like the writer of Hebrews said, “Now the God of peace…equip you in every good thing to do His will, working in us THAT WHICH IS PLEASING IN HIS SIGHT, through Jesus Christ, to Whom be the glory forever and ever, Amen.” (Hebrews 13:20-21)
God has been working on me this past year about being willing to pray in submission…being willing to say, “God, whatever it takes…”
Just two days before this latest drop seizure, I had been reading about Mary and then this benediction in Hebrews.
I don’t know what it is…what it will take…for me to please God.
But I do know that I need to be willing to let God do in me…and in Aaron…that which is pleasing in HIS sight, even when it may not be pleasing in mine.
Even when it hurts, deeply.
“Submission is preferable to consolation, for consolation pleases us but submission pleases God.” (Thomas Hog, 1692)
Who is it that I most want to please?
It’s tough when my submission involves my child. I love Aaron. I love all our children.
But a huge area of my close walk with God, which I truly desire, is to be able to submit “whatever it takes” concerning my children as well.
I humanly want the consolations of God…the closeness and assurance that I feel when He blesses me, and them, with wonderful things.
But true submission to God comes only when I am willing to relinquish all the warm fuzzies for the stark hardship that often comes when the deepest lessons…and blessings…are allowed to occur.
Allowed to occur because I am submitted to God.
God won’t bully me into submission. Submission happens when I open my hands and release my desires to Him, trusting Him to do what He knows is best.
Even drop seizures, if they do start again, are somehow being allowed by God in Aaron’s life and in ours.
The sky just before Aaron’s seizure that evening was so beautiful. I have only to look up and know that God is there for us.
The heavens declare the glory of God…and I want to do the same, as well.
He Said What?! 