We met with the neuro this week to devise a new game plan for Rhema’s seizures. We knew every possible option would be discussed: Diazepam/Valium. Steroids. A brain surgery called multiple subpial transection (MST). In my mind, none of the options were good. And I cannot begin to explain the emotional turmoil I felt over even entertaining the MST surgery as a possibility.
The Lord is my strength and my shield; my heart trusts in him, and I am helped. Psalm 28:7
It realized how often she is having absence seizures. Because she has autism, people may assume that she’s just in her own world. Absence seizures in a “typical” child are much more obvious. In Rhema’s case, I wonder how many times we’ve chalked it up to ‘the autism’ when really it was ‘the epilepsy.’
… my heart trusts in him, and I am helped.
But we came out of the meeting feeling good. We are stopping the current med (because it’s so not working). She is now on a relatively high dose of diazepam. She will go into the hospital in a few weeks for long term monitoring. If the diazepam works, she will remain on it for the next 6 months to a year. If the seizures return, then we will re-visit the MST surgery as an option.
We have been blessed with the best doctors, the best therapists, the best teachers…
…my heart trusts in him, and I am helped.
She’s been on the new med for 3 days. The diazepam makes her loopy. Her eyes are unfocused, half-opened. She’s unsteady on her feet. She looks so … drugged. It’s hard to watch.
…my heart trusts in him, and I am helped.
A precious friend of mine often takes care of Rhema during church, just so that Brandon and I can attend the service. Last Sunday she held Rhema in her lap and prayed with all her heart for healing, for peace, for joy, that Rhema would know her God.
Tears. Is there any greater gift?
In fact, people pray for us whom we’ve never even met.
…my heart trusts in him, and I am helped.
When prompted, Rhema says hi and bye quite regularly now. Hope cheers. And it floors me every time. Because even in my dreams, try as I might, I could not imagine her looking someone in the eye and saying “hi.”
And then there’s Romans 10:8,9. Her name verse. I believe she has the entire thing in her head. When I recite it to her, she nows says “heart” and “saved.” Good words, yes? What a miracle.
Her EEG reports detail how continuous spikes, sharp waves, and focal slowing dominate the areas of her brain that control speech and comprehension. I have pictures of her brain on my desk explaining to me in complicated medical jargon why she cannot understand language.
Based on the reports, it does not seem possible that she could produce speech.
And yet, she speaks.
Just a word here. Just a word there.
But. she. speaks.
Awesome God …my heart trusts in him, and I am helped.
rhemashope.wordpress.com 
Thank you again Jeneil for sharing your heart of hearts. One day this will all be as a wink of an eye…and yet the time passes slowly as we live it out…every scan, every appointment, every med, every word, every thanksgiving. I have been revisiting the Healing Rooms near us with Reid and for myself. God surely has all power and authority. Stay tuned to Him. Hoping Friday will work at Logan:)!
hi, heart
saved!
bye
so beautiful…
there are so many things real and true that cannot be explained by anything other than the presence at all times in all ways of a larger more powerful force that pulses endlessly and with benevolence. this is a perfect example of that. sending xxxx
Your faith in a loving God gives me peace as we struggle with our own seizures and medical decisions for my brother. Sending you love and praying that God will give you the knowledge of what will be best for Rehma.
And it’s a miracle everytime, one of our kids labeled non verbal speak.
Keep’em coming, Rhema!
Yes, keep em coming Rhema. And let your resolve, strength and exceptional grace be validated.
HE IS STILL ON THE THRONE JENEIL AND BRANDON AND PRAISE TO HOPE FOR CHEERING HER SISTER ON.YOU WILL KNOW WHAT TO DO FOR RHEMA BECAUSE GOD WILL TELL YOU.
LOVE YOU MUCH.
GRAMMA SMITH
Tears in my eyes.
God is certainly with Rhema (and all of you).
Rhema’s words are such a wonderous gift and are so beautiful!
Beautifully written.
Your heart and trust are in the right place.
2 Corinthians 1:3-4
“Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our tribulation, that we may be able to comfort those who are in any trouble, with the comfort with which we ourselves are comforted by God.”
I ALWAYS stop and think of YOU when I read this. He has comforted you & you ALWAYS Thank HIM publicly…… bringing the WORD to life and sharing with so many that they might also know HIM.
Praise God for you. Praise God for his Strength seen in you.
I strive to be more like Jesus….. and there are human examples like yourself on this Earth….
Bless you!
Rhema has an indomitable spirit. I will think of her – and you – while I am in Nepal! xoxo
You bring me hope when i need it the most.
Thank you.
I love you.
I too look back on so much and wonder how much was the autism vs the epilepsy. It’s so frustrating that the human brain’s complexity makes it such an enigma even to those specialists who dedicate their lives to the study of neurology. But at the same time, that complexity is what allows our kids to do things that the experts say are impossible.
“We have five senses in which we glory and which we recognize and celebrate, senses that constitute the sensible world for us. But there are other senses – secret senses, sixth senses, if you will – equally vital, but unrecognized, and unlauded.” ~Oliver Sacks
She speaks. Miracles happen. I will continue to pray for all of you.
The battle is the Lord’s. You are helped. You helped me with the reminder. Thank you.
Yet again I am uplifted by your words and your faith. God is most definitely with Rhema and all of you, working miracles. I’ll continue to keep ya’ll in my prayers.
I have great faith in the medical profession however……..they don’t know everything.
Cheers