Miracle Girl

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Two doctors told us we should “cut our losses” with Annalise.

They told us she would most likely not survive birth.  She had a hole in her heart.  If she did survive, she would be profoundly  developmentally disabled.  She had a cyst in her brain.  She would never feed herself, recognize us, or roll over on her own.

That was the prognosis of a very caring, experienced OB-GYN, who told us this in a soft voice filled with compassion.

Kim had been on bedrest since her 20th week of pregnancy because the baby did not seem to be growing well.  We were sent to the ultrasound specialist to get a clearer picture of what was going on.

This was after we had survived the death of our son, Isaac.  Kim had a miscarriage during her pregnancy after Isaac’s death.  So we were scared with this pregnancy.  We lived in Colorado and had driven three hours down to Denver.  We watched for almost an hour while the ultrasound specialist took and recorded all the images, all the measurements.  She didn’t tell us anything until she was completely done.  We waited.

Then she said, “There are some problems…”

When I say we survived the death of our son, I mean most marriages end after the death of a child.  I understand why. You’re in pain and you want someone to blame.  Or you aren’t grieving the same way or at the same rate.  One of you wants to push it away and get on with life and the other can’t go on at all.  We struggled with the decision of whether to try to have more children.  Our daughter, Lydia, was 2.  Then Kim had the miscarriage.

The next decision was even more difficult.  In the end, we realized that we would be paralyzed if we decided not to.  We had wanted to have more children.  We would be choosing because of fear.

Then we chose, and then we were sitting in this sterile white room with bright florescent lights, but everything was going dark. I was back in the tunnel that we had survived the first time and somehow we were going through it again; we had won the reverse lottery twice.   We were going to watch another baby die.

I have a very good memory but all of that time is shrouded in darkness for me and the details are hard to pull up.  Nonetheless, I remember not being able to pray.  I just couldn’t.  Some younger, much more positive friends asked, “Are you praying like crazy?”  My response was, “To whom?  The same God I prayed to when Isaac died?”

Our church was grieving with us.  We were all in shock and people were trying to figure out what to say to us or simply avoiding us because what do you say?

But one woman, whom I’ll never forget, the mother of one of my best friends at that church, got angry.  She rebuked the leadership for their lack of faith and she demanded that they start fasting and praying for us.  She was a very kind woman but also very determined and she was pissed.

So they prayed.  They held prayer vigils for us.  I remember going to one and still being completely unable to pray for myself or for Kim or for this baby whom we had guarantees would die or, at best (but impossibly longshot), be incapable of interacting with us.

We never considered aborting her.  In seminary I studied narrative theology, which says that we do not make our decisions in some moral or ethical vacuum, from scratch, but our stories make us who we are and inform our decisions.  We didn’t decide in that moment when the doctor said, “There are problems,” and gave us her advice, nor when the OB-GYN explained what would almost certainly happen and counseled that we end the pregnancy.  Who we were, our beliefs, the decisions we made based on those beliefs–and how those decisions then continued to shape our beliefs, which is the spiral that forms us*–led up to the decision that we never considered “cutting our losses.”

I remember being in this fog, trying to take care of Kim while she was on bedrest, as she was supposed to be eating 100 grams of protein a day and drinking a gallon of water while doing nothing but rest, still trying to pastor young adults but having that detached sensation where you watch yourself walk around and say things and think, “Hm, that’s interesting what I just did there.”

And then I remember this moment, driving in my car, angry but numb and detached.  I was sitting at a stoplight and God said, “Are you going to pray for her?”  We knew this baby was a girl.  We had chosen not to find out beforehand with Lydia, but those days of innocent wait-and-see were long behind us.   In my experience of it, I sat at that stoplight forever.  I was so angry with God for Isaac’s death, that we were going through it again, that Kim was enduring all this and it would make no difference.  I had no answer.  I couldn’t answer.  And the stoplight stayed red.  The sun may have stood still.  I sat there.  Finally, from somewhere, I said, “Yes.”  And the light changed.

We decided to name her “Annalise” because it’s a beautiful name and we thought she deserved something beautiful.  We wanted to be be able to give her something beautiful, since we didn’t know if we’d have any other chance.

At thirty weeks, Kim’s doctor examined her, ran some tests, and said, “You have to get to the hospital now. Don’t stop at home first. Go.”

We drove back to Denver and they checked Kim in to the hospital.  The next morning, the ultrasound showed the blood flow in her umbilical cord was reversing and they scheduled Kim for an emergency cesarean.  But two “even more emergency” cesareans were happening before us.  So we sat in the hospital room and waited for our emergency, waited for this to be over, waited to see.

A nurse came to give us an update.  She told us Kim would go into surgery in about half an hour.  I took that as a cue to go sit outside for a few minutes and talk with God.

I prayed.  I told God, “You have to let her live.  This is it.  If she doesn’t live, we’re done.”

I meant it.  Of course, it’s a ludicrous prayer for a gnat to be telling a blue whale, “Do what I say,” and that analogy falls perhaps infinitely short of the gall I was showing.  But I was praying my heart.  That was the most honest prayer I had, my demand for her life, my threat against the Almighty Creator of the universe.**

We went into surgery.  I stood by Kim’s head.  I decided not to look at her middle cut open.  I talked to her.  I was now past my ability to pray, living in this moment.

Then they delivered the baby, delivered Annalise, and I was told to wait outside.  I walked out, far beyond being able to ask questions, and there was the ultrasound specialist, waiting, talking with the pediatric surgeon, who was standing by to do an emergency heart surgery, in case there was a chance to save her life.  It’s strange, the things we remember:  they didn’t speak to me.  They nodded a greeting and continued talking shop.  I didn’t need their company right then, except that I was terrified, but it struck me as odd that in this decisive–and, according to her prognosis, tragic moment in my life–they had no word of comfort or encouragement for me, but went about, literally, their business.

And then a nurse walked out and handed Annalise to me, all wrapped up, and she weighed nothing.  She weighed so little I felt like my arms got lighter when she was placed in them, that they floated up toward the ceiling.  The nurse said, “She’s doing great.  She’s breathing room air.  You can carry her to the neonate ward.”

We were in Denver, the “Mile High City,” and our daughter, who weighed one pound, ten ounces, was breathing on her own.  One pound ten ounces.  Think of that next time you buy fruit, when you use the scale.  Her leg was the size of my pinkie, exactly.  Somehow she was perfectly all there, yet there was nothing extra to her, huge eyes and a tiny head that was so much bigger than the rest of her and no fat whatsoever, just straight down and stick-thin, this child who fit in my palm.  She blinked and looked at me and didn’t make the least noise.  I carried her, alive and well, to the neonatal intensive care unit, where she would spend her next two plus months of life, trying to gain grams–grams, paper clip weights–to somehow accumulate the four pounds needed to take her home (but they finally let us go when she reached three pounds thirteen ounces).


I’ll end with three things.  Believe me, there is so much more I could tell you, twists and curves and reversals.  I’ll save for another post how she almost bled to death at six months.

First, Annalise is seventeen now.  She’s not very tall, but she is mighty.  She has a great sense of humor and one of the most compassionate hearts I’ve ever known.  She loves babies.  She’s a junior in high school.  She recognizes us and, most days, even claims us, especially when we buy her coffee or gum.

Second, I recently got to watch Annalise be a gladiator.  Our school rented some inflatables which included a huge blow-up ring with an “island” (a raised platform) in the middle.  Kids were given these huge, foam and plastic “fuegal sticks” with which each tried to knock the other off the island.  The first to get two out of three won.

 

Annalise is still tiny.  She may be 4’9″.  But she went entered this other state when the “game” began.  As I watched, I realized“they are fighting for fun; she is fighting for her life.”  Intense does not begin to describe it.  She just wouldn’t yield.  She won twice, against girls who easily outweigh her by forty pounds and are nearly a foot taller.  

She lost to a guy who must have 60-70 pounds on her, but she only lost 2-1.  It wasn’t that she had style or skill or strategy.  She could barely wield the stick because that required leverage she didn’t have.  She just refused to be knocked off.

She came off shaking with adrenaline, looking almost in shock.  She’s a little competitive, though not extreme at all.  But something took over in her.  Something was at stake for her.

Watching her “duel,” it came to me:  this was precisely the determination that God gave her to survive her birth and first months.  None of the doctors could explain how she was doing so well.  Their prognoses were now very cautious.  They didn’t know Annalise.  We didn’t yet, either, but we would learn how stubborn and determined our girl could be.  Kim and I have always reminded each other, when we run into this, that God made her this way, that our Miracle Girl had to be stubborn to survive.

Third, I’ve always been grateful for the many wonderful doctors and nurses she’s had.  One who holds a special place in my heart.  Annalise’s first pediatric neurologist, a Jesus follower, who had met with us several times before Annalise was born.  She came to our hospital room late that night.  She was delighted with how well Annalise was doing.  She gave us perhaps the best medical advice we’ve ever received:

“The biggest factor in how Annalise does will be her home environment.  We’re not sure what her mental capacity will be, but what you do with her will make all the difference.”

We took those words as our marching orders.  Instead of fearing what might be, we pursued what could be.  Annalise has superseded every doctor’s prediction for her.  I’ve lost track of how many times we’ve been told, “I can’t explain how she’s doing so well.”

Our explanation is simple: she’s a miracle.

And I will not be surprised if, when we get to heaven, God tells me that Annalise lived because of that woman who demanded that we pray.

 

 

*Here I distinguish between what we might say we believe and what our beliefs actually are, as evidenced by our actions.  Or, as another seminary professor taught us, “Our values are what we do.”

**Is this not the paradox of prayer, that I was demanding God do the impossible thing only because God had confronted me that I was not asking?

 

15 thoughts on “Miracle Girl

  1. Trish

    I am very grateful for the stubbornness of your daughter, and of your church friend who insisted on prayer.

    I also appreciate it profoundly when you write about the darknesses you have personally experienced. Thank you ~

  2. Esperanza

    Mike, This blog of yours has me in tears! But I loved every word of this the story of Annalise! I will always have so much love for her and Ms. Lydia♡♡

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