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Sometimes, God Draws a Veil

February 2, 2015

A dozen posts bubble around in my heart for every one I have time to write. This is one of those stories I must tell. When my girls look back and read the story of God’s work in our family, there are some messages I want them to find here. This is one:

Nothing in all creation is hidden from God’s sight. Yet, in love, He often hides things from ours.

(2)-2In 2007, when Joy was referred out for adoption from South Korea, her file included positive MRI findings for PVL, a form of brain damage common in very premature babies. The MRI findings, along with her gestational age at birth (29 weeks) and weight (980 grams or one pound; she is a twin) placed her at high risk for cerebral palsy. We were waiting for a child with significant needs so did not find that prospect daunting.

At the same time, our expectations for Joy’s development were set by our international adoption clinic here in the U.S. Neurologists here looked at her Korean MRI and did not find PVL. They told us kids with a similar birth history and a clear MRI did not necessarily develop cerebral palsy. If they did, they could usually walk with forearm crutches. Whether or not she developed CP, she was at high risk for developmental delays, learning disabilities and executive dysfunction deficits like ADHD.

How do parents make decisions like this? Like which adoption referral to accept?

I’m not sure how to conceptualize this: Does it make it more simple, or more complicated when you believe as we do, that God sovereignly arranges families?

Eight years after we accepted Joy’s referral, only two things stand out in my mind. First, we were waiting for a toddler boy (hard to place) and were surprised to be referred a baby girl. That departure from our plan seemed significant. Second, we were living in a four-level-split house that could not be made fully accessible. With the mortgage paid off –one of the fruits being we could afford to adopt another child –we thought we would be living there a long time. So it seemed wise not consider the referral of a child who would use a wheelchair.

Now that I think about it, we ruled out one other condition: blindness. I had no logical reason for that. Blindness simply scared me. And as we checked “yes” to almost every condition on our agency’s medical checklist, our couple of “no”s did not deeply disturb me.

June 08 June 09 005Joy came home from Korea at 13 months old, beginning to show signs of cerebral palsy. At her first visit at our children’s specialty hospital, I brought copies of her MRI reports: the one-sentence report from Korea indicating PVL, and the longer one from the international adoption clinic stating there was none.

I asked her doctor, “Do you want to see the actual MRI? Korea sent it to us on over-sized acetate sheets the size of x-ray film.”

“Bring it in next time you come,” she told me. “We’ll scan it into her electronic record. Then we’ll have it for reference in the future.”

Next visit, I surrendered the film. Several hours later they gave it back to me, with a new note on the film jacket indicating it was in their electronic records. At that time, I couldn’t bear to throw anything away that dated to Joy’s life before we met her in Korea. So I saved her MRI.

Three years ago, we were moving. Joy had developed a quadriplegic pattern of cerebral palsy that involved her whole body. We had just taken delivery of her first wheelchair and needed a house with a more accessible floor plan.

Packing, Joy’s MRI came to hand. Take it or toss it? In the four years since it had been scanned, no doctor had asked about her MRI. The archivist in me noticed the acetate sheets were stiffening and in a decade would be brittle. Judging the digital version at the hospital was the better copy, I threw away Joy’s original MRI rather than move it to our new house.

DSCN3161Then, eighteen months ago, when she was six, Joy had a work-up to rule out absence seizures. It included her first visit with a neurologist here in America. Her neurologist wanted to see her infant MRI. I did, too. I had only ever seen Joy’s brain as a series of thumbnail images on the acetate sheets when I held them up to a window once. I had no idea what I was looking at.

Joy’s neurologist turned an over-sized monitor in my direction and went fishing in her medical record for the scanned copy of Joy’s MRI from Korea. She found nothing. She made a phone call to imaging services. They had nothing on file that was not linked to Joy’s record. She hung up.

“No big deal to not have it,” she said. “The 24 EEG will tell us a lot more.”

It ruled out absence seizures.

DSCN4200Another year passed. Joy’s absence-seizure like behavior didn’t go away. We lost her attention for moments at a time. She’d stare off into space toward the ceiling or into the distance, not distressed, but not present. We could call her back, but it was like she was returning from some place far away. Much of the time she seemed unable to maintain her focus on activities at school. She was easily distracted by sounds, by light, by movement. In groups she often chose to sing to herself (loudly) rather than participate in what the teacher and other students were doing.

Joy just couldn’t keep her eyes on a task. Not even for her own safety. While she had the ability to propel her wheelchair, she only did it in very familiar environments, sometimes. Other times she would wheel right into a wall or a door jam because she didn’t look where she was going. And even though she knew the mechanics of backing up and turning, she never looked around to problem-solve getting un-stuck. She’d just sit there and wait for somebody to help her.

In 2011, when we got her first wheelchair, despite having quadriplegia, she showed all the physical indicators of capacity for being independently mobile in a manual chair, which her therapists projected was a precursor to a power chair. Instead, three years later, Joy is a child people push everywhere all the time.

Why??

Ten months ago, I initiated a neuro-developmental workup for Joy because too many things about her development have not been adding up. Specifically, I wanted to figure out why she struggles so much with attention and communication, the two elements that increasingly seem to isolate her from the rest of the world.

As part of the work-up, I requested a new MRI.  The result: Joy has PVL just like Korea reported. The brain damage is prominent on her MRI and is very old, dating back to her days as a premature baby in Korea. Joy’s PVL would have been impossible for our international adoption clinic to miss.

If they read the right child’s MRI.

You can see exactly where this historian-mommy’s heart wants to take this inquiry, can’t you.

That’s one reason God has drawn a veil.

God knows me. He knows I am prone to push logic and intuition as far as they will go and only then rest –when inquiry will take me no further. When I have figured out a mystery, made sense of an enigma, explained the inexplicable –then and only then does my mind stand down. Great trait in my chosen profession. But it produces quite a limp in my life of faith.

What kinder thing could God do than have me, with my own hands, throw away the original MRI, while he took care of the glitch that disappeared the scanned copy at the hospital?

Why? It seems obvious that this is not a path of inquiry it is good for my heart to travel. It doesn’t lead to peace and rest, to my growth in faith and trust in God’s goodness and provision. In love, he’s keeping me from going there.

Nothing could be more clear than God’s choice to make us and Joy a family. And nothing could be more clear than the fact that he waited until now, when she’s on the verge of turning eight, to, with equally deliberate action, lift a veil that until now he has kept drawn:

Joy is functionally blind.

No one has guessed it in the presence of her typical eyes and, we all thought, an unremarkable MRI. Joy has Cortical Visual Impairment. CVI is a neurological form of visual impairment caused by the same PVL that causes her quadriplegic cerebral palsy.

How, for almost eight years, has everyone missed the fact that she is functionally blind?

Nothing in all creation is hidden from God’s sight. Yet, in love, He often hides things from ours.

God kept it hidden. And he has revealed it now for a reason. For decades we as a society have let kids and adults live with the untreated effects of CVI, believing it to be part of the package labeled “how some people with quadriplegia are.” Today, clinicians are identifying CVI as a distinct diagnostic element even in kids like Joy who are multiply impaired because Cortical Visual Impairment can, in many cases, be significantly resolved.

Lord willing, that’s the next chapter in Joy’s life: “In Which I Learn To See.”

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2 Comments leave one →
  1. Lamia permalink
    February 3, 2015 4:54 pm

    This post of yours struck a chord in me. Thank you for that! When we were adopting there were only three types of needs we said no to and thought we could not handle those: FASD, severe developmental delay and life threatening conditions, and we were expecting a preschooler. As it happened we were referred a baby, with a diagnosis of ‘severe developmental delay’ and known history of ‘birthmother resorting to alcohol’ during pregnancy, but when I saw his face I knew he was my child. Soon after the adoption we found out that he also had a life threatening condition. But, he is our child and we could not be happier with him now years later, although some days and things are definitely not easy.

  2. February 18, 2016 7:05 am

    Thank so much for sharing this story of God’s goodness and perfect timing.

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