On Expectations

“Just wanted to let you know the EEG results are back. Dr. C will be calling to discuss them.”

I check my little equation: Nurse will call = good news, Doctor will call = not so good news.

I wait for the rest of Thursday.

And all of Friday…

And all of Saturday and Sunday…

“Dr. C never called,” I say on Monday morning.

“No? He’s been really busy. I’ll send him a message again to call you.”

I wait for the rest of Monday.

And now, Lord, what wait I for? My hope is in thee… Ps. 39:7

“Dr. C never called,” I say on Tuesday morning.

“No? I’ll have him paged.”

I wait some more.

“Dr. C never called,” I say at the end of Tuesday. “I’m thinking maybe the EEG is clean? Because he hasn’t been in a hurry to call me… I just wanted to know before Thanksgiving…”

“Hold on,” she says. A minute later, she’s back on the line: “Dr. C wants to meet with you tomorrow. Can you come in to Children’s tomorrow at 10?”

“Ummmm, yeah. Yes. Sure.” Thinking, this can’t be good.

 

By the time we’re ushered into his office the next day, I have already:
~held Rhema for dear life on the elevator in the parking garage (she likes to bolt when the elevator doors open at every floor
~saved her from crazy Boston drivers at a busy intersection
~extracted her from every wheelchair (some occupied, some not)
~lost my parking ticket
~watched her run in circles in the waiting room, sip someone’s soda, jump on chairs, baptize herself in the water fountain, and try to take a drink from the fish tank.

Dr. C (whom we are grateful for) turns to me and casually asks,

“So did anyone ever call you about those EEG results?”

Um….  No, dude.

For a moment, I imagine myself a spurned lover at his feet. I waited by the phone for 5 days and you never called. WHY DIDN’T YOU CALL ME?????

The image is interrupted by Rhema pushing him out of his rotating chair so that she can spin in it. As I pull her out of the chair, she taps on the keyboard on his desk.

I make a joke: “She’s pulling up her results. The suspense is killing us.”

He laughs… kind of.

Then he tells me her EEG showed no seizure activity during sleep. Good news. Wow! The med is working.

Then he goes on explain that the EEG did indeed show sub-clinical seizures during the day and during drowsiness. I knew this might be the case based on her behaviors lately, and her school nurse had called about absence seizures.

Still, as I skim the report, my hands betray me; they’re shaking.

On cue, Rhema flops to the floor and begins to melt down.

We leave with a plan to increase her current med again and a new prescription for another drug to try. Dr. C says he’s sending our “case” over to a new doctor who specializes in sleep disorders and seizures. “Maybe he’ll have some ideas.” This, he says, after working with us for three long years to treat Rhema’s epilepsy.

Why is it that I keep waiting on things and people, doctors and drugs – anyone besides the One who knit her together in my womb, colored her like a mocha frappuccino, spirited her with an iron will, named her and loved before I knew her?

Ultrasound: Rhema at 29 weeks

 

My hands steady and a peace washes over.

My soul, wait thou only upon God; for my expectation is from him. Ps. 62:5

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26 thoughts on “On Expectations

  1. Wait is such an ugly four letter word … 😦 But your faith is definitely in the right place.

    Please know that I am here and am glad to hold your shaking hands at the drop of a hat. I’m serious. You don’t have to do this alone.

    Um … Dude.. I live in Boston..

    Love you.

    • J, I know! I would have called you, but it was so last minute AND it was the day before Thanksgiving! A friend took care of Hope for me, so it was a pretty easy adventure, all things considered. 8)

  2. One day I hope you will put your awesome words out in print. You consistently take life’s challenges where they belong, in the hands of the One who made us all. Autism by Faith. You’ve got a gift to give.

    And also – “Um…. No, dude.” – I shot latte out the nose with that.

  3. What a precious ultrasound photo! Looks just like her! You always make me laugh despite such trying circumstances (“I imagine myself a spurned lover at his feet. I waited by the phone for 5 days and you never called. WHY DIDN’T YOU CALL ME?????”).

    LOL- please put this all in a book.

  4. If this was Chidren’s Hospital I’m not surprised. AOA recently ran a good piece on how useless they are. Hope you find better doctors who get it!

    • We’re actually big fans of Children’s Hospital, and honestly, Rhema’s neuro has been great. (I’m afraid I may have painted a negative picture which was not my intent.) The fact that he’s referring us to someone else is rather sobering because he’s as good as it gets…. leaving me to conclude again that “my faith should not stand in the wisdom of men, but in the power of God.”

  5. Well, there’s a consensus. You must write a book (in your “free” time) and entitle it “Autism by Faith” (thank you blackknightsbrood!)

    You have an amazing ability to bring humor to challenging circumstances.

    Always praying.

  6. I just drafted something on this same order of putting our faith in Him and nothing else. We are on the same wavelength girlfriend. I love me a mocha frap–and Rhema and you! Amazing ultrasound that looks like her today. I can see the waiting room dance and feel the perpetual hanging by a thread. When will we learn? We learn by teaching another.

  7. I want to join Neally in saying, “We LOVE Dr. C.” While I have observed many doctors at Children’s that I would have punched, that is not Dr. C. He listens…we have had appointments (they schedule appointments every 15 minutes, I think) that have lasted way over an hour. He takes our opinions seriously. He is very respectful. I guess, in short, while I don’t think neuroscience has caught up to autism yet, Dr. C. has never belittled us…he has worked with us each step of the way and given us all we wanted or asked for.

    Dr. C, if you read this, know we are so appreciative for all the work you have done for our family over the last 3 years. We are indebted for your service to our family.

  8. So sorry you had to wait so long – the waiting is soooo hard. Hopefully a new set of eyes can give more answers. Thinking of you.

  9. It’s a difficult relationship with doctors sometimes, isn’t it? And the tests – oh, the tests and MRIs that show what is really going on in there… they really scare me, too.

    I’m truly thankful for your faith, my friend. It’s simply amazing.

    love.

  10. We’ve gone through a lot of the best of the best docs referring on because they simply don’t have anything else to offer. You are absolutely right – the ONE who created Rhema is the only One who can guard and lead your hearts and minds each step of the way. Never lose hope.

    Rhema and Hope…it’s what we all need to make it through our lives…

  11. Praise God for the little victories. And praise God you know and love the one that knitted her inside your womb. So precious! It’s hard not to trust or hope in medicine, doctors, any glimpse of light, but it’s so much more peaceful when we give up and just trust God, the very One who spoke the stars into existence. Love you Neily. Praying for you. And I’m echoing Jenee, you seriously need to publish all of this….

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