Tuesday, November 16, 2010

Bilocation, Double Vision and Focus

When my daughter went to the ER last week, I admit the biggies were right there in front of me.  Staring down the maw of possibilities like Brain Tumors, Cancer, Stroke, it was the longest hour of my life waiting for them to get a cat scan done and read.   The Agony of the Garden struck home as I sat there with my daughter sleeping, waiting for news, not wanting certain news and feeling alone.  The wolves of the past few hours of scrambling were circling....see....see...you are alone.  Your husband is in New York.  No one can get to you easily and this is hard in part because you have so many.   I could feel the yips and nips...as if everything we'd done to parent them had somehow failed in this hour, and that I was being indited.   It was an unpleasant whisper from a liar who thrills at despair.   We were here because she had double vision and I wished for the gift of bilocation so I could be both home and at the hospital.  Everywhere I felt inadequate.  Everywhere, I felt divided from everything. 


When they mentioned they would need to take some spinal fluid, my heart ached.  Having held one child for a spinal tap and refused to do it for another, I gritted my teeth for what I anticipated I would have to do when they ushered me out.  The doctors had pulled the curtain to do a lumbar puncture. The nurse walked me back out to the waiting area with the permanent Disney TV and the aquarium of fish.  Despite not wanting to actually hold her through the procedure, I didn't want to be away.  I lasted three minutes tops.  Maybe I wouldn't be holding her when they did this but I'd be damned if I was just going to hang and sip diet coke. 

I found my way back to the pediatric ER and parked myself outside her room.  She didn't know I was there but I knew.   And I heard my daughter's voice.  She was singing, church songs.   Then she started describing each of her brothers and sisters in detail and it was a reassurance to me, this long list of people was meaningful to HER  as a way of coping with the unknown and frightening.   "Rita is really smart.  She plays rock band and colors with me and we play barbie."...."Paul is cute.  He likes to pull everything down from the book shelves and that's a pain but he loves music and will play with cars and blocks and drums for hours."   "Will is brave..." she rattled off echoes of my own heart's knowledge of each of them.  Here she was enduring pain and yet bringing comfort, it was the essence of this child; the first to go get band-ades, the first to give a comforting hug, unknowingly giving her own mother courage.

When I finally got to go back in the room, she looked at me, "There are still two of you." she said.  I smiled.  "And we both love you."

We still don't know why she sees double, but the opthamologist gave her a patch for school to wear over one eye --switch from time to time, and it helps her to focus and get her homework done in 1/3 the time it normally takes.  We will be going to a specialist tomorrow to address this from a clinical perspective, but at least some of the puzzle that is my daughter has been revealed by this journey.  She always seems a bit lost in space and time, if she's seeing double, this is in fact a reality for her.  She is always bouncing, touching, tapping, talking and I realized, she is orienting herself to the world, to the real physical world through sound and touch.   With the patch, she is stiller, quieter, but still the sparkly sweet self we love...so hopefully tomorrow, we will have a name for this, but in the meantime, we have a strategy.  

Finally, walking up to Communion Sunday, I couldn't escape the wonderful words a friend forwarded to me after all this craziness started: FAITH is Daring the Soul to go Beyond what the eyes can see.  

And I could feel that I was being asked to walk down a path with her I did not know and to trust; and that this was the case with Paul and his Down Syndrome, and with my oldest and his search for a college, and with my daughter who just started high school, and with my father and his Alzheimer's, and with so many situations that it felt overwhelming and yet the path seemed luminous; obvious and reassuring. Walk up to receive.

7 comments:

Hannah Liz said...

You should call Father Rookey!!!! Father Peter Mary Rookey is a priest in Illinois who has hundreds of miracles occur from his praying over/talking with people over phone, praying with him or him paying for you. He is alive, however old, but still VERY VERY VERY miraculous. My family has called him whenever we have something wrong and always have WONDERFUL results. His number is 708-748-MARY (6279)
Praying for you and your family and daughter :)
Hannah

Mum2eight said...

so sorry to hear of your daughters double vision Shelly. I will keep her in my prayers.

Christopher Milton said...

Reading this gives me courage for when I eventually have to cross such bridges. Thank you.

Would it be dreadful or helpful if I threw out a condition your daughter's reminds me of, bearing in mind that I am not a doctor?

SherryTex said...

Hannah,thank you for the number and the suggestion. I'm a great believer in prayer.

Mum28 --thankyou. --Sherry

Chris --I'm not stressed by the possibilities at this point as I try not to worry about things until I know WHAT to worry about. Tomorrow we see the doctor who is best tailored to address her specific problem and should get some answers. I don't mind hearing speculation as it is useful to consider the possiblities, MS has been suggested, as have a few other possible causes. Thankyou for asking.

MightyMom said...

good perspective sister!

psssst, do you have my phone number? cuz you can DEFINITELY call me whenever you need a shoulder.

Karen said...

Faith is daring the soul to go beyond what the eyes can see.

Good luck today. You and your Faith will be in my prayers.

Please keep me posted on any updates.

Christopher Milton said...

My first thought was Temporal Arteritis (Giant Cell Arteritis), but then I had readan article about it less than an hour before.

Leaving a comment is a form of free tipping. But this lets me purchase diet coke and chocolate.

If you sneak my work, No Chocolate for You!