Before I could exhale…

FMF WRITERS, prompt
BEFORE

His eyes were closed- ofcourse, what’d I expect, Joh was born blind, though Doc Parin (name changed) was looking at him, as if with a search light right to the brain. Then he scrutinised us carefully in that quiet room with nice vase and air conditioning. Warm August, palm tree in his window, fine scent of pine floor wash.

Our son Johann was at his worst: post seizure drug side-effects weren’t pretty. I’ve written about this, but not in detail. Details that will forever remind me of that Other Presence in the room besides the girls, my husband, son Joh, doc and me.

“So, Johann. You’re a …musician I see. Play the violin?” His voice was flat smooth butter on crisp toast.

Neuro had referred us here to Psychiatry, really?!

What a rollercoaster of a year it’d been: series of Docs at Neuro centre, trial medications;

over this past year our gentle sweet tempered 18 year old had turned into a harsh, aggressive stranger. There were scratches and bites, rage and chaos.

“What’s your favourite musical piece then?” Doc was friendly, but I cringed. What was expected here...Bach?

We’d been out since 6 am to beat rush hour traffic to St.J’s. Joh hated hospitals, we told him we were going to a new Restaurant. (The Cafe there did have some nice rolls though😃). Now knowing we were here had infuriated him further, not to mention all that medication he was on.

Joh sank his forehead on the table.

I felt a dark thick wave hover over my temples, as weariness began to overwhelm me-

weary sick of medications that hurt our kid, of people who tried to assess our personalities as a family, of being judged and stared at. Joh was our golden boy, the girls couldn’t function without him. He had a way with words and humor; knew how to keep guests entertained, sang like an angel, played at least 3 instruments. After the seizures suddenly began last year, his voice had begun to give, along with tremors and sweats. Repetitive words, noises, sudden fury, dearest Lord… help?

Doc P. was gazing at some spot over our heads, his face a melting pot of pity and professional sorrow;

that big black wave of depression over head now began to crackle crash, I felt the earth below me shift and heave. Joh had been featured in gigs- with a band, solo, he was a force to reckon with. Was pitch perfect, could call out names of chords, tuned instruments, jammed with some of the city’s best… now a mass of nerves, he yawned hard and flung at a stack of files. Doc sighed….

my husband Jeff put an arm around Joh, the girls made the soft sounds they make when they are cheerleading him. I tried to think of something but all I could do was cry tearless inside, diving into a depth away from the black negativity, I couldn’t breathe ….

Joh straightens and says in clear tones, “Reckless Love. That’s my favourite one.”

“What violin piece is that? Never heard of it.”

“It’s my favourite…”

“You play it on the violin…?!”

“Yes, Doctor.”

Before I could exhale, the Lyrics lifted me over and above the thing trying to destroy peace…

“Before I spoke a word, You were singing over me
You have been so, so good to me
Before I took a breath, You breathed Your life in me
You have been so, so kind to me, Oh, the 1, never-ending, reckless love of God
Oh, it chases me down, fights ’til I’m found, leaves the ninety-nine
I couldn’t earn it, and I don’t deserve it, still, You give Yourself away
Oh, the overwhelming, never-ending, reckless love of God, yeah…” (Kory Asbury)

….

I could write on and on.

Joh is 90% better. Doc’s been steadily knocking off 3… no 4 drugs that weren’t supposed to be given to him, while now introducing a new one. Theres deadly withdrawal too we deal with. It’s a tough 24 hrs/ day, often every minute we take a new risk. Triggers must be watched. Tempers, language flies, we all host series of bruises in various tones of healing.

Tonight at prayers, Joh sang Reckless Love again, and before I say another word, I must say how this has changed me, to know He breathes over us, over and over, realtime recklessly, in love pursuing us, till we overwhelm the thing that tries overwhelm us.

Life’s getting steadily more beautiful. We thoroughly relish silent pauses, hands are held, faces hugged. Sweet Jesu what a wonder You are, how precious this life is, in its healing stages too. What heights and depths here we’d never have sampled if not for these days. Before we forget, I need to put it all down: the fabulous reckless love of God that holds us all close, no matter how unchartered the course. More than physical, it’s the spirit of man that yearns the presence of God.

I’ve exceeded my 5 mins Kate Motaung of FMF writers, but am grateful to you all for Prompts that wring out these precious details, for the widening circle of friends who make life a blessed experience to share. God bless you all, and precious ones who take the time here to read/ comment. Stay blest.

RN.

26 thoughts on “Before I could exhale…”

  2. We sing that song in our church a lot and I just love it. It sounds like you have an amazingly talented and kind son. He sounds like a blessing. I am so grateful that he is 90 percent better. Praise God for He is so wonderful. We give our dog CBD for his seizures and it worked immediately. It is completely legal and he gets it everyday and doesn’t have them at all anymore. My husband takes it for anxiety and it works very well. Life is a set of paths with trials but you are right with God in our corner it does just keep getting better. Thank you so much for sharing your story. Joh sounds like such a blessing. You have such a talented family. Love to you sweet RN and to your entire family. Have a blessed Sabbath. I believe in the power of prayer and I have and will say prayers for your family. Hugs Joni

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  3. There are many alternatives to MDs and pharmaceuticals: have you looked into any of them? tried any of them?
    Some healers I’m looking into are: Suzanne Stryker, Janet Evertsen, Scott and Vicki Werner, Tom Paladino and Rev. Williams. Suzanne is a personal friend I trust very, very much. Janet I’ve just met but she inspires confidence. Werners, Paladino and Williams were recommended to me by Janet. Do you know anything about any of them? Please share if you do. If you don’t, do look into them and I’ll be happy to share with you what I find out, if you like.

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    1. Stevesufian, first off, my apologies for delayed reply. Secondly thankyou so very much for taking the time to reply and for your kindness. Yes we’ve been looking at every possible option, esp prayers. The names you’ve mentioned aren’t familiar to me. We are in India, though we’d so welcome prayers of these wonderful people. God bless you for your concern and reward you. Stay blest 🌻

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  5. Praying for you and yours.
    It can be so very hard to trust
    the promise pharmaceutical
    to adapt, and to adjust
    the hard to something beautiful.
    I’d like to think that our God
    could do it all unto our contemplation
    but we live in a world that’s flawed
    and He gives researchers inspiration
    to find the answers He has hidden
    in chemistry, biology,
    to do the wonders that are bidden
    by His love and mercy,
    to heal the sorrow, stop the pain,
    and set us on our feet again.
    In the #1 spot at FMF this week.

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    1. Thankyou so very much, your presence here means more than I can express. How are you faring?
      Will visit FMF1 again to check. Your posts and words are terrifically inspiring. blest to know you, your perspective in these ….
      These waiting rooms of life.
      I wish could personally meet you and pray together. But then we can do that, no matter the odds. God bless you, and continue to, as He sure has!
      Ohhh yes, our son has to go thru these… this cocktail of drugs! We tried options, and some aren’t available in India. What’s there- is very suspicious, unsafe.
      Andrew, thankyou so much for being here. I look forward to when you write! 😇🙂🌻🌼

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  7. I am an RN and I no longer support medicine today. I no longer am working either. I have learned the hard way to help myself with alternative means through my own health issues. This is a lot of work, a lot of trial and error, a lot of mistakes and disappointments, yet I am avoiding harsh drugs and I am keeping myself stable and healthy. This does NOT mean I throw out the baby with the bathwater, no! I do take some allopathic medications that I could not live without yet they do not have the harsh side effects. We do the very same with our special needs cats. Two Vets cannot believe that some of our cats are still alive. They are not given harsh allopathic meds with horrible side effects. They are however given Homeopathy (when studied is even more difficult then mainstream medicine), acupressure treatments by us, herbs and “other”, and the best nutrition and water we know to give. I encourage you to begin to look in other places other then medicine to assist Joh to heal. I truly wish you the very very best for you and your family!! xo

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    1. We have. Heard about esp CBD oil (illegal here in India). Nothing we found that could help, yes I truly appreciate your kindness here. Here we have Ayurveda and Homeopathy but both have their question of finding reliable source. That’s the crux of the matter here. Cbd is proven abs safe, but … well, I told you. Illegal, though last month I heard there were moves to legalise it. Bless you for saying. Doing our very best to find alternatives.🌻

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      1. Bless you! CBD oil is legal here (NY) and am shocked it is not legal In India. I am so sorry. CBD oil is one of the supplements I use both for myself and our cats. It works. I will keep you in my heart and prayers. May CBD oil be legalized in India and soon. It is made from the HEMP plant, a big difference from the marijuana plant. Good luck! When health issues are at the forefront, I know how scary it is to rely on ourselves. (((HUGS)))!!!! xo

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        1. Hemp, yes. I cant think WHY our Govt is scared about this when ppl are smoking it illegally anyway. Yes do pray they legalise it tomorrow morning first thing, or I’m going scouting for Hemp to grow ourselves! but yes, praying, relying on God. Anyone have a hemp sapling, do say. 🌿 praying this reverts soon. There must be so many here who could do with this oil. Bless you too Amy Rose for your time here at my lil life

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  11. Joh has you and the whole family to love him but the best is he knows God loves him. He will be alright. There is a constant tug of war between traditional medicine and modern medicine. I believe God has given us the ability to research and discover medications to help the sick. The most important aspect is that we must also trust that God will hold us in the palm of his hand…

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    1. Ah yes. Loved and more. We are recipients of such Grace and mercy, healing and care. God knows we’ve tried every possible alternative. Cbd oil is the one thing that works… illegal here in India. But we have the oil of Grace. Its brought us this far. We are so deeply grateful. Sometimes all our wisdom is to naught, but His prevails, against all odds. We been baffled, hurt. I posted this one for 2 reason is: 1. Theres been such healing thru’ it all. 2. Some think we talk of Gods love because we haven’t suffered. (Ha. Theres that too).😊 it’s my joy and breath to speak of His presence no matter the circumstance. Thankyou for your kindness. God bless you.

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