A Setback…But God

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.

Author: Patty hesaidwhatks

I'm Patty and I write about our adult son who has Epilepsy and Autism, who still lives with my husband and me, and who is a package full of many surprises and joys and challenges and TALK! Lots of talking, which creates laughter and some other reactions as well. I also write about how God shows Himself to me in everyday life.

23 thoughts on “A Setback…But God”

  1. I needed to read this at this exact moment! My adult daughter who lives with us is also experiencing more physical difficulties-even this morning. I was anxious in my thoughts when I sat down to check my email. The first one I read was your blog post! Thank you, Patty, for reminding me of the truths from God’s Word! I will be praying for Aaron and for you and your husband as well.

    Liked by 1 person

    1. I always pray that whoever needs to see my blog will, and that God would give me the words needed. I’m sorry about your daughter, Sindy, and I’m stopping to pray for her and for you right now. ♥️♥️

      Like

  2. Oh this set back for Aaron and you and Gary…, I confess I cried. For years I walked this road with my daughter and we both know you NEVER grow accustomed to any seizure. Never. We were blessed to have a Neurologist who prescribed a new medication for my daughter that was a life changer for her, going on 20 years now.

    But, oh the trust in God it requires of us as parents. I go to Psalm 23 and one word (for me) speaks of total trust and submission: is. The LORD…, is…

    He IS!

    Not should be…, not could be…, but He is.

    He clearly tells me, He IS my everything, that is, IF I believe and submit. I have to remember, while things in life shock and undo me, He is never shocked or surprised. He IS in it all.

    Father God, I pray for Patty and Gary as parents who-with love and joy-have found You in every turn and challenge that is Aaron. I pray for Aaron that this seizure was a ‘one off’ drop seizure and not a return for him. We thank you for the gift of having Gary right beside Aaron so he didn’t have external injuries as well. Father we know this was not a surprise to you, and we thank You for the kindness you extended to all of them with that gift. I pray for Your guidance, doctor wisdom, and peace for such loving and devoted parents. May they hear, feel, see, and know Your words through every source available to guide them in Aaron’s care. We ask this in the name of Jesus. Amen.

    Liked by 2 people

    1. Your comment and prayer mean so much to me, Cecilia. You truly do understand how we feel right now. I love what you said about God…IS. I’ll remember that.
      I’m thankful that your daughter has done so well for all these years. What a gift that is!
      Thank you again for your love and friendship, Cecilia.

      Liked by 1 person

    1. Thank you, Ryan. Yes, I have a friend whose son has used Charlotte’s Web. But doctors can’t help in any way with CBD that isn’t FDA approved. They can’t recommend dosages, so you’re on your own. That always bothered me when we had Aaron on over the counter oil. It was guesswork. Epidiolex, pharmaceutical CBD, is monitored by his Epilepsy specialist just like all of Aaron’s other meds. I just hope it continues to help Aaron as we possibly tweak the dose. Bless you for caring, Ryan.

      Liked by 1 person

  3. I know God doesn’t give us more than we can handle, but understanding is difficult. I am praying for no more drop seizures for Aaron; and God’s peace and comfort for you. Cyber hugs!🙏

    Liked by 1 person

  4. I’m sorry you’re experiencing these setbacks but your heart is in such a beautiful place as you show an example of submission to God. That speaks to me and I’m sure your other readers also and those who know these challenges you’re facing.

    I’m thankful to know of this particular cbd drug to pass on the name to my mom and Jeffrey. Jeffrey has experienced many of the same seizures you explained with the injuries too, and my mom’s seizures have only been coming in the middle of the night and usually only one every month or two..very strange.
    Sometimes it helps a bit to know we’re not alone in these things but the beautiful thing is to come together in prayer in His name.

    Liked by 1 person

    1. I’m sorry that Jeffrey struggles with those seizures, and your mom. It’s such an unpredictable road. I don’t totally understand why the Epidiolex is different from over-the-counter CBD, but for us it was life changing. I hope we can tweak it if Aaron’s drop seizures continue. I think we can.

      Yes, we’re not alone and our trials can bond us as we pray in knowledge for one another. Blessings to each of you! ❤️

      Liked by 1 person

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