Nothing

openbook

Rhema was *great* during her EEG. It was unbelievably smooth, and I know that someone must have thought of us and prayed for us! I will write about her results soon.

Rhema’s doctor is one of the top pediatric neurologists in Boston. On Monday, before he arrived, a team of medical students and residents came to speak with us. First, they asked lots of questions of Brandon and me, getting Rhema’s history from our perspective. (Rhema’s seizure disorder – Landau Kleffner syndrome – is rare. You just don’t see a case like hers everyday.)

Then the resident examined Rhema while she sat in bed. These examinations are never easy – even something as simple as getting a temp or blood pressure on her is difficult because she gets scared. She wriggles, squirms and fights. The resident did manage the standard checks – he looked in her eyes with a flashlight, tested her reflexes. Some tests were unsuccessful because they required following directions and understanding the directions to begin with, such as ‘raise your arms,’ and ‘deep breath in and out.’

The resident stooped down to look her in the eyes (she was sitting on the bed). He raised two fingers and asked, “How many fingers am I holding up?”

There was silence as Rhema looked all around, anywhere but the doctor’s face.

“How many fingers am I holding up?”

He attempted to get her to look, waving his fingers in front of her, “How many fingers am I holding up?”

No response.

Switching gears, he asked, “What’s your name?”

Silence. Crickets chirped.

“What’s your name?? What’s your name?”

I could feel the heat in my face. I was starting to get angry, angry at him, angry at the whole situation. Hadn’t this guy read her file? Didn’t he know her medical history? Surely the word NONVERBAL was written somewhere in magic marker on her records, across her forehead? Wasn’t it painfully obvious by now?

The doctor spontaneously ripped off his watch and dangled it in front of her. “What’s this? Rhema. What’s this?”

Finally, I interjected. Surprisingly, my voice was soft:

“She’s not going to answer you.”

He slowly turned to us, “What does she answer?”

I know he wanted to know for education’s sake, for the benefit of the other medical professionals in the room.

Brandon and I looked at each other. A flicker of deep longing and… loss… passed between us. Something I believe no one can understand unless, they, like us, would move heaven and earth, spend their last penny, and chop off their limbs…
just to have one real, meaningful conversation with their child.

It is what we miss most of all.

What does she answer?

His pen was ready to take notes on a blank page.

“No… nothing.” I stuttered, as if realizing it for the first time.

He waited. He seemed to want us to scroll our memories, to come up with something. But we didn’t have to try to remember. Surely we would remember. But there was,

“Nothing.”

Later, after everyone had left and it was just Rhema and me, I nearly jumped off the sleeper chair when I remembered something.

Rhema is nothing!

Seriously. Rhema is nothing!!!

I have been studying her name’s meaning for a long time. Many who read this blog know that her name is translated from the Greek as “the spoken word” (as opposed to logos, which is “the written word”).

But there’s another, lesser known meaning for rhema, and that is “no word” or “no thing.” Specifically, in Luke 1:37, when the angel is telling Mary that she will birth the Son of God, he says,

“For with God nothing shall be impossible.”

‘Nothing’ in the original translation is ‘rhema.’

She is the embodiment of that verse. I look at her, and I already see God doing the impossible. There are a LOT of discouraging times, but I tell you, there’s no doubt in my mind God will continue doing the impossible in her.

In that hospital room, and even now, I am prompted to open my fists and give all of my nothing to Him… “to the God who gives life to the dead and creates something out of nothing.” (Rom. 4:17) 

I give my rhema to the One, who with a Word, framed the worlds from nothingness and sustains it even now. (Heb. 1)

 

Write our story, Lord, in your words. Take our nothing, and fill our blank pages with all of the impossibles You have made possible.

 

*My friend Lianna sent a link to a beautiful post about nothingness. Click here.

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27 thoughts on “Nothing

  1. It’s late. There are so many responses running through my mind reading this post. It’s hard to organize them past Whitney Houston, so I’ll get that one out of the way. ” I have nothing, nothing, nothing if I don’t have you”. I know she wasn’t referring to our Lord, but the words apply, and I kept/keep hearing them as I read this.

    Next, your pages, Rhema’s pages are pouring over with so much. You are way, way far away from nothing. There is so much more than words that make ‘something’. Beyond the silence, there are volumes. Love, relationship, life together. All that you offer in your experiences, Rhema’s experiences, in your faith to all who know you.

    On she goes… Isn’t it hard to know when to step in and say something to others who attempt to engage our girls? Like you, I often stand back and wait… give Grayson a chance to respond, not talk over her just in case… it’s a dance that changes with the situation and with my (or her) mood.

    And now it’s off to bed, and I’m going to come get you if I can’t shake Whitney.

  2. the pain is palpable. i wish, God i wish – we could take it away – but there, wrapped inside the heartbreak, you find promise. beautiful, hopeful, but yes, painful.

    love. so much love.

  3. I second Jesswilson & Julia O’C’s comments. EXACTLY.

    The book would be God’s words flowing from what He is teaching you & Brandon through Rhema…His spoken word.

    Much love to you!

  4. Jeneil, I love the picture at the top of this post. It says so much about what you have dealt with. Reading your blog has blessed my life. Your understanding of God’s grace in your life is amazingly beautiful.

  5. Beautiful, heart-wrenching, yet uplifting.

    Seriously, how did you not bop that resident over the head. Geez.

    It’s hard to explain how badly I want more than “give me” from interaction with Kayla. I want to know what she thinks, what she feels. It’s all locked up in that mind of hers.

  6. Absolutely beautiful! Will you calligraphy those verses and frame them in Rhema’s room, for me?

    I understand….

    That resident was more ignorant than idiotic (my first thought), not knowing what God was speaking to you through his donkey-like actions and words.

    Praise Him that He has not left you or forsaken you even in the face of pain. xo

  7. I love your insight. Thank you so much for explaining it so well. I wish there was something I could say that would help, short of offering to give the doctor a magnifying glass since he so clearly wasn’t paying attention to the important part of his profession, ……the soul within.
    Best wishes

  8. I so vividly remember the pain of the days when I would ask Nigel something and he could not answer, no matter how many times I asked or pleaded or prompted. I remember, and I always will. And I remember doctors doing the same thing, asking his name, and me sitting there with a lump in my throat. Really – how is that supposed to make a parent feel? Your patience with that doctor was remarkable, as is your spirit. Sending love and hugs.

  9. I did pray; I will continue to do so. While Rhema’s “nothing” doesn’t quite match mine, there have been times, seasons in life when I, too, found my silence because of my perceived nothingness. Who of us couldn’t voice the same?

    God has been gracious and kind to restore the “words” within and to allow me his melody that rings with purpose. I pray the same for your Rhema and for that conversation you long to have with her. This has been a special week of holding my own daughter, pondering her life and being so incredibly thankful for her creation.

    Who can fathom the mystery behind it all? I can’t, but I’m given the privilege of trying. It draws me closer to my Creator.

    Blessings and peace be yours this week~elaine

  10. This moment at the hospital with the doctor — I’ve had it too. The impossible sometimes does become possible. Besides, there are other ways to answer questions… with a hug, a smile, or a laugh. Glad the EEG went smoothly and wish that doctors could learn some sensitivity in addition to their practical training.

  11. I read this late last night and the tears started flowing. Quite freely.

    Then I read Susan Senator’s latest post. My, how the dam broke.

    I must buy stock in Kleenex.

    I feel it, Jeneil. I really, really do. I try to avoid doctors at all costs (and I am married to one!). And, thankfully, Daniel is so very healthy, so I am pretty successful on that end. But my poor child, my firstborn, just like yours, cannot tell anyone his name. Or his age. Or call me mommy. Nothing.

    Nobody who has not lived it can know what a triumph it is just to be able to ask your child simple questions — yes or no questions — and get a shake or nod of the head. Do you want to eat pizza? Do you want to jump off the diving board? Do you want to watch the Wiggles? …. Oh, when do I get the nonverbal “no”???? Ah, yes: are you ready to go to bed.

    So little and yet so very much. Not nothing. Something. But so very far from what we long for, isn’t it???

    Will be waiting to hear what you learned from the latest hospital visit ….

    Love,
    Leah

    • I know, Leah. ‘So little and yet so very much.’ Yes, even though we long for more, we get to cherish the little things.

  12. Beautiful – those verses and your perspective, and your beautiful Rhema.

    I’m glad she did so well at the hospital, will be waiting to hear the results.

  13. You express your thoughts so beautifully.

    It is so interesting to me the things we all have in common as parents, though our children are different. I have not done much “study” of autism, though it is so highly linked to the seizure disorder my daughter has. Many Infantile Spasms parents suffer through the same void of communication with their children. And the doctors do the same thing with our children. It always makes me feel like I am being evaluated too. How soon will I take over the conversation so that he will let my daughter be? And then sometimes she surprises me by interacting way more than I would have suspected. And I wonder why I am so afraid to see how she reacts to being tested…..

    Because she is my only child, until I am told how delayed she is, I don’t really know. I stopped noticing all the deficiencies and instead noticing the achievements, however small.

  14. I read rhemashope often and pray for you and your family every night. You have a beautiful family and such wonderful faith.
    I am a friend of Brandon’s folks and taught with Marg for many years.
    Your writings are inspirational and a blessing to many. Thank you.

  15. wow, i never knew her name meant that too. nothing, but a good nothing… that is a rhema word for sure … the Holy Spirit spoke it right to you. love that Holy Spirit. she has come so far, and i know it will all be worth it. it already is, isn’t it.

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