Part 5 (1/2)

Kevin listened quietly. I couldn't understand why he still seemed so stressed. I felt like I was breathing with both lungs for the first time in a year. All that frustration and anger and Internet research and begging to be heard-it had gradually formed a vise grip on the back on my neck, and in one cool rush of relief, I felt it let go. Everything the surgeon was saying made so much sense to me. I'd been so hungry for that clear explanation. A simple diagnosis. A plain path forward. Happily ever after.

”Our prayers have been answered!” I told Abbie and Adelynn on the phone.

I wasn't ready to hear that the answer was no.

Reality set in as the days in the hospital dragged on. I was eager for this nightmare to be over. I wanted us to get back to normal, and I had my fantasy definition of ”normal” all figured out. Apparently, G.o.d did not get this memo.

Anna didn't get better. She got worse.

Once again, her little belly swelled, and she sank into a haze of sleepless pain, surviving on sips of liquid and IV fluids. She wanted to lie in bed and be left alone, but Kevin and I wheedled and nagged. We rousted her to her feet several times a day and marched her around the fourth floor of the hospital in an attempt to kick-start her digestive system. A few days after the surgery, Annabel suffered a pruritic reaction-an all-over skin-crawling itchiness-from the morphine, which then had to be taken away from her, and the painkillers she could still tolerate gave her very little relief.

That Sunday, March 9, 2008, the pediatric surgeon came by to check on Annabel. When I saw him in a dapper three-piece suit instead of the customary surgical scrubs, I smiled and said, ”Well, good morning! You're in your Sunday go-to-meetin' clothes.”

”I was in church this morning, and I couldn't stop thinking about Annabel,” he said. ”I thought I'd stop by for a minute and...”

His smile faded as he laid a practiced hand on her forehead. He summoned a nurse, who checked Anna's vitals. Her temperature had spiked to 102.7. She was in great pain, distended and pale, and when the surgeon palpated her tummy, she flinched in agony.

”Pinging,” he said to Kevin, moving a stethoscope over Anna's midsection.

”What does that mean?” I whispered.

”When there's extra gas and no healthy gut sounds,” Kevin said, ”sometimes you hear pinging.”

”And that means?”

”Something's wrong.”

Her intestines were fully obstructed again, and would require surgery to open up her abdomen once more. Within minutes, the whole surgical ballet repeated itself. The anesthesiologist came to talk us through the surgery, and I was relieved when he gave Annabel the first component of the c.o.c.ktail that would step her down to unconsciousness. I leaned in close to nuzzle her ear, the way I used to nuzzle the precious little seash.e.l.l ears of all my baby girls, whispering that heartfelt prayer of blessing from the book of Numbers.

”The Lord bless you and keep you. The Lord make His face to s.h.i.+ne upon you and be gracious unto you. The Lord lift up His countenance upon you... and give you peace.”

Kevin kissed her cheek and whispered, ”Bye, baby. See you soon.”

As they wheeled her bed from the room, he took my hand. Sorrow poured from my heart like water from a breached levee, and I cried for a long, bitter while. Gathered in the waiting room was a heavenly host of prayer warriors, precious family and friends, beautiful souls who love Kevin and me like siblings and love our girls like their own.

My brother Greg and his wife, Jill, had been caring for Abigail and Adelynn at their house in Wichita Falls and had brought them to the hospital to be handed off to Nina, one of several great friends who took turns caring for the girls so Kevin and I could camp out in Annabel's hospital room. Kevin's sister, Corrie, was holding Adelynn (three years old at that time) when Dr. Scott Sharman, our pastor from Alsbury Baptist Church, walked in. When Adelynn saw him, she flashed a sunbeam smile, reached out her arms, and said, ”I want G.o.d to hold me!”

We all burst out laughing. It was such a perfect moment. We all knew exactly what Adelynn was thinking; we talked every week about going to ”G.o.d's house,” and when we got there, right up front was this guy who seemed to be hosting the party, shaking hands at the door as people arrived and departed. Adelynn received that like a child and drew the logical conclusion. Now she needed to be held by this big someone who made her feel safe and loved.

I think everyone in the room could relate. We'd all been through so much by this time, Adelynn's frank little demand cracked us up and broke the tension, but as the laughter made us breathe, her words resonated like a bone-deep prayer: I want G.o.d to hold me. We laughed till we cried, and then we cried until we laughed again.

After what seemed like a thousand hours, Kevin and I were taken to meet with the surgeon in the same room where we'd met him nine days earlier. I remember thinking how easily we become creatures of habit. We sat in the same chairs, staring at the familiar white-on-white wallpaper, feeling the layers of bad news that had been spoken and heard under the generic artwork and anatomical diagrams.

The surgeon came in looking exhausted and grim.

”When organs and abdominal tissue stick together, adhesions-bands of fibrous tissue-sometimes form. We found severe interlooping adhesions... required extensive dissection to free...” After that, the words came and went in waves like an outgoing tide. ”... separated and placed the intestine back in the abdomen... because there was no definitive cause for the second obstruction... continue to have adhesions... that she may not recover in a manner giving a strong quality of life.”

”Wait-what?” I squeezed my eyes shut and opened them wide, trying to take it in. What he was saying. This thing he couldn't be telling me. ”You're saying... this will keep happening for the rest of her life? You're saying that from now on... this is her life?”

”I'm saying we may have to continue to release the adhesions through surgery.”

”But why is this happening?” I pressed him. ”I don't understand what would cause something like this to happen.”

”The gastroenterologist will be in to talk with you about it. If we're looking at a motility disorder, that can be very difficult to diagnose. The testing is invasive. You wouldn't want to put a kid through that unless you absolutely have to. Once it's diagnosed, it can be a lifelong battle.”

Kevin asked the relevant clinical questions. The surgeon gave guarded clinical answers. I sat still, my mind reeling through the day-to-day realities beyond all that jargon. I saw the landscape of Annabel's life being razed before my eyes. The landscape of our own lives-Kevin's and mine. And Abigail's. And Adelynn's.

Our family had been torn apart. Abbie and Adelynn had been living out of their little backpacks for almost two weeks, chronic sleepover guests on a rotating schedule that now dropped off the edge of the calendar into an unknowable future. Kevin's partners at the veterinary clinic were amazingly supportive-never questioning that family comes first-but Kevin hated imposing on them week after week, month after month.

Year after year.

But all that shrank to a footnote; the shadow overwhelming everything was the suffering Annabel would have to endure. The invasive procedures. The scarring surgeries. The slow erosion of her goofy, s.h.i.+ning spirit. It was wrong. Like trying to breathe water or swim through solid rock. Impossible and broken and wrong, wrong, wrong.

Kevin and I kept it together pretty well while talking with the surgeon and then allowed ourselves to be ushered to the surgical waiting area where our friends and family sat talking in low murmurs, gentle laughter, soft prayers. The men immediately stood and went to Kevin, and the women took me in like a warm patchwork quilt. Oh, I wanted G.o.d to hold me, and He sent His best possible emissaries. I started to tell them what the surgeon had told us, but as the words came out, they became as real as cinder blocks, and they were too heavy for me. My sweet sisters let me gasp and stammer through it, and then they let me cry.

With so many tubes and wires in and out of her body, Annabel looked like a little pink b.u.t.terfly in a spiderweb. A tube that traveled up her nose and down into her stomach provided suction for drainage. Rectal and urinary catheters performed the obvious functions. Two small tubes in her nostril pushed oxygen into her lungs as pneumonia threatened. A PICC line (an IV catheter that goes directly to the heart) was inserted just below Annabel's collarbone to deliver nutrients she couldn't get any other way. Her body blossomed with deep purple bruises as one vein after another was blown. Nutrient-providing IV fluids are thicker than saline, and the veins can take that for only so long. Anna hadn't eaten for fifteen days. Feeding her with IV fluids wasn't going to cut it for the long haul.

That's where we were then. The long haul.

Abbie was eight years old then: too small to understand, but big enough to do as she was asked-and we had to ask a lot of her. She became my right arm at home and Adelynn's second-string mommy when I wasn't around. She was also the spark of joy that kept us from getting morose, a little lighthouse who kept us oriented toward what childhood is supposed to be. She never saw or treated Anna like anything less than Anna. She prodded her sisters to play and giggle and be interested in having fun, and her endless imagination flew Anna away from unpleasant reality.

I recall one of the good days when Anna was feeling well enough to play and Abbie was able to nudge her outside for the afternoon. At suppertime, they came in, wonderfully sweaty and dirty, smelling like sunscreen and dry gra.s.s.

”Mommy,” Annabel enthused, ”Abbie and Adelynn and I played a game where we had to get to the top of this tree in order to save the world!”

”ABBIE, BREATHE WITH ME. In through the nose... out through the mouth...”

In the back of the CareFlite ground vehicle, I gripped Abbie's hand, keeping my voice low and warm, hating the moment of tough love that I knew was coming, hating all the tough-love moments that had already come and gone.

”Abigail, we can't do this right now,” I said firmly. ”We need to keep it together now. You've got to get ahold of yourself. If you can't breathe, they'll have to take you to the hospital, Abbie, and I can't go with you.”

”I don't want to go.” Hiccuppy sobs caught in her throat. Abbie knotted her fists in her lap. ”I won't go. I have to be here for Anna when she comes out. I have to be here for Adelynn when you all go to the hospital. But I'm scared, Mommy. I'm so scared...”

”I know. I know, but-”

”You don't know,” she choked through her tears. ”You don't know.”

”What don't I know? Tell me so I can understand.”

”It's all my fault.”

”No. It is not.” I put my hands firmly on her shoulders and sat her up to face me. ”Listen, sister. None of this-ever-has ever been your fault, not one bit of it. Why would you even think that?”

”Because I told her... I told her to get in there.” Abbie pulled the mask away from her face, and the whole story came out in a guilty, breathless rush. ”It started to crack, and I told her... I said I would get around her and go down the big tree, and then my weight would be off the branch, and she could cross over and go down the way she came up, and I thought it was only a little bit in there, like a foot or something, and I just needed her to step in there for a second so I could get around her, and she kept saying no, and I kept saying just go, and then she did, and she... she... she didn't want to do it, and I made her do it, Mommy. I made her get in, and it'll be my fault if she's-”

”Abbie, no. Abbie, listen to me. First of all, that was a great plan. That was a brilliant plan, and I love that you thought of it. Because you were looking out for her, like you always do. You had no way of knowing it was going to turn out like this. Abbie, sometimes, even if we try to do everything right-even when we do do everything right-sometimes things still turn out all wrong. And all we can do then is regroup. You gotta regroup now, Abbie. You need to let go of everything you can't control. Anything that's already happened, anything you're afraid might or might not happen-you can't control any of that. You can only control how you react to it. And how you're reacting right now, Abbie-I can't fix it for you. Only you can fix it. And you can, Abbie. You are a strong person, physically and emotionally and mentally. You can fix this.”