Happy Birthday, Betsey Pearl

[Today would be Betsey’s 8th birthday. This is what I wrote on her birthday four years ago.]

Today is my daughter Betsey Pearl’s 4th birthday. Happy Birthday, child.

Betsey had been looking forward to her birthday for awhile, more or less since her last one. Sometime around then, she suddenly got the concept of birthdays and being older. She’s been excited off and on ever since. “How old will you be on your birthday, Betsey?” her Mom would ask, and Betsey would say, “I be . . . 4!” Then she would sign “4″ with her hands. The sign was exactly the same as the sign we used for “Betsey” (the letter B), which only added to her excitement. Four Birthday! Betsey Birthday! Eventually–that’s the way kids are–the excitement died down. Her 4th birthday was too long in coming.

Then her sister Emma Caroline had her first birthday in February. I and Mom and Betsey made a fuss over our Emma. That revived Betsey’s own birthday excitement for a time. She invented a little ritual to showcase it. “Emma 1,” she’d say, drawing out the 1 to build tension. She’d sign 1. Then, “Abby 2.” Abby being her favorite cousin. She’d sign 2. “I . . . 3.” She’d sign 3. “I be 4!” She’d sign 4 and “Betsey” all at once, in delight. I’ve only put the exclamation point in on “I be 4!” in writing this. I could just as well have put it in starting with “Emma 1!” She always ended with a pitch of excitement, but frequently she started there as well.

She’d loved her last birthday, in South Bend, Indiana. Let me quote from my journal. “All day long people came to visit. She gave them pieces of her wooden toy cake and she was happy. When the night came she didn’t want to go to bed. ‘No, No, More Happy Birthday!’ she said . . . .” She was frantic with tears.

Which shows that she really did have a good time. Despite all. The reason she had wooden cake because she was too ill to eat at the time. That illness was the reason so many people came to visit, on the other hand. Their worrying and praying about her had made them love her.

Betsey’s illness had actually started two years earlier, a few days before her first birthday. We’d checked her into a hospital because she’d vomited enough to be dehydrated. That night she seized for an hour. A CAT scan showed a tennis-ball brain tumor jammed against her brain stem, and enormous fluid pressure on her brain. They put a shunt in. Then I gave her a blessing with our bishop, who worked at the hospital, and he rode down with her in the ambulance to the children’s hospital in Indianapolis, while we followed in the car. On her actual first birthday, an LDS neurosurgeon worked all day on cutting out the tumor. She gently warned us that Betsey would probably not survive, but Betsey did. Lots of people had joined us and the surgeon in praying.

That was not the end of the ordeal, of course. Betsey still had some residual cancer that started to grow back. We spent the next six months giving her deadly chemotherapy and then radiation.

But the cancer and the treatments weren’t the immediate reasons she couldn’t eat cake last birthday. Because of the seizure and the operation, and because of a stroke she experienced a few days later during a tracheotomy, she’d suffered severe brain damage, mostly to the parts of the brain that controlled the body. Less brain than an infant, we were told. She couldn’t walk or talk or eat or breathe or move.

We all kept praying. First she was able to move, a little, enough to follow us with her eyes. Then she smiled with half her face. Then she sat up. She crawled She learned signs. She started to talk, a little. By her third birthday, when the crowds came to celebrate with her, she was bright kid who could walk in a walker and play and hug and kiss and be a pest like any kid. We were happy.

That happiness was hard won, I won’t kid you. We had scares. Cancer recurrences. Midnights when alarms were sounding and one of us frantically tried to increase her breathing rate with her mute, frightened eyes staring on you, while the other rushed our portable medical machinery to the car for the drive to the emergency room. Afternoons pacing the hospital room, waiting for the lab report, while Betsey fitfully dozed. Had the infection responded to antibiotics? Had her immune system finally bounced back from the last chemotherapy? Three or four times in the last few years we stood with her on the knife-edge of death. And always, always, we had a continual hard slog of treatments and therapies and machinery and fear.

And always, always, reasons for peace. I never told Gordon Smith this, but during one dark episode for us, at the dark hour, he wrote about his own child dying and we were comforted, though our daughter lived. Was our life on the brink of the abyss so bad when others had fallen into it and survived? We read the comments and followed the links in them. They also comforted us.

His post and the comments were so comforting that when he linked to it again this year on March 5 I found it slightly ominous. Why would this comfort be provided me again when everything was well?

Sitting there that afternoon, re-reading his post, I realized that everything was ‘well’ only in a sense. Betsey still had residual tumor that could grow back. She still couldn’t walk without a walker. She still used a trache. Half of her body was still stiff and unwieldy, and looked to remain that way for years. Yet everything was well, in a sense. She’d learned to talk so much that she didn’t use signs anymore. Her breathing was strong enough that we could leave her talking valve on her trache all day long. The doctors even gave us a cap for the trache that would help wean her off of it. She’d taken up the violin. We were finally able to pump her food into her stomach instead of her intestine, so for the first time in years she was able to feel full. And she had started to eat again, a little. Most of all, she had developed a wondrous love.

There is an episode that in my mind represents all these little triumphs. On Friday, March 4, Sara and little Emma surprised me by walking into the office at lunch time. Come down stairs for a picnic lunch, Sara said. We went, me and my fellow law clerks, down stairs, and across the road to Pioneer Park. Betsey was there, with one of her nurses, playing on the monument. ‘Dad!’ she said. She gave me a hug and a kiss.

She sat happily, tranquilly, through the picnic, eating her Pirate’s Booty starch-fluff snacks and sipping a thickened milk shake through a straw. She beamed. When we were done she blew a kiss to each of my co-clerks and told them goodbye.

The next evening, the evening of March 5, in the middle of a lecture from her father, stern in both sickness and health, she started to seize again for the second time in her life. We took her to the hospital.

The cancer had grown back, untreatably. We stayed the week in the hospital until they let us go on Friday. Saturday we returned. She was worse. She splashed for awhile in a tub of ice cold water that she’d asked for, then gradually slowed down until all movement ceased. Her eyes shut. Her breaths slowed. On Sunday our family came in from all over to say goodbye to her. Those who couldn’t come spoke to her on the telephone. She opened her eyes twice, I remember. She said a few words which we will treasure.

Towards the evening, when her breathing had slowed almost to death, she held on for a few more hours when we asked her to, to give her grandmother and aunts time to finish the drive from Salt Lake. They came and kissed her and then, I remember it very distinctly, she was sitting on her grandmother’s lap and I explained to her that her body was shutting down. When it had shut down completely, I said, she could go home to Jesus. Two seconds later her heart stopped. Sara and I took her into our arms and she drew her last breath. Everyone left the room while we washed her and dressed her and laid her out, as we would again do two days later for her funeral. We buried her in Eagar, Arizona, where her dead lie.

Let me give you the full version of the Happy Birthday journal entry I quoted earlier. I wrote it just after her third birthday, when we found out about her first cancer recurrence. It seems appropriate now.

We got the bad news on Tuesday that Betsey’s tumor has grown by 25%. We’ll have to irradiate. I cried there and on the way back. I thought this thought and told it to Sara. In my mind I saw myself in the future, when Betsey was dead, and this is what I thought:

C.S. Lewis says that of the past, the present, and the future, the present is the most comparable to eternity. For us it isn’t. Betsey’s with us in eternity but she’s gone in the present.

Besides the present, Lewis says that the past is the most like eternity. I think he’s right. All my life, in my heart I’ve been a melancholy man because I longed for things that could only be found in the past. I remember evenings as a boy on the front lawn with my family, laughing but knowing soon we’d get up and go inside and the day would be over. I wish with all my soul now I could travel back to one of those evening when we were all together as a family and happy. I wish with all my soul Betsey was still 9 months old again. We were happy then, we were a family then. Or even the day she turned 3. Her hair was gone but she could say some words and sign some others and walk in her walker. All day long people came to visit. She gave them pieces of her wooden toy cake and she was happy. When the night came she didn’t want to go to bed. “No, No, More Happy Birthday!” she said, but the happy birthday had to end. I wish I was there now and the Happy Birthday would go on and on to the end of the world. I wish I could go back. I’ll never get my wish. The past is a foreign country and I hold no passport there

I sung over and over in my head a ditty. “O the far hills, O the farther plains, what would it matter if I could go home again?”

Happy birthday, Betsey, I wish you were here. Lacrimae rerum, Betsey, tears at the heart of things. You can add that to the compost pile of quotes and classical tags and poetry fragments that I’ve bombarded you with all your life:

Sunt lacrimae rerum, et mentum mortalia tangunt

I don’t know if I’ll be able to use them ever again without choking up over you. I remember when I first read Childe Roland to the Dark Tower Came, that Saturday when your Mom was out on errands and I and you and Emma stayed home. As soon as I finished reading, I couldn’t help myself, I came fizzing out of my chair over to where you and Emma were playing and I started reading the last five stanzas out loud to you both. Emma wandered off but you sat patiently through it, including me yelling the last few lines, “In a sheet of flame!”, etc., and when I asked if you wanted to hear it again you nodded enthusiastically, and when after that I asked if you wanted to hear it a third time you still said yes, though you looked pained. And after that, I recall, you scooted off to your bedroom. But twenty minutes or so later, after we played, you let me read it out loud for a fourth time. Oh, Betsey. I’d read the phonebook if you were hear to listen. Give me the devil and if I could stand against him–I can’t, no more than you could–I’d gouge out his ears so that he’d never hear another word meant for you and you not here to hear it.

Happy birthday, Betsey. Emma’s been missing you bad. She can’t sleep at night, in the quiet room, all alone, and she doesn’t know why. Today, as a present to you, I’ll tell her Betsey stories, so she’ll know. I’ll tell her about after she was born when Mama was sick and sleeping. I put Emma to sleep head outward on the easy chair and left you to your own devices. I came back later. You had come over in your walker and were standing there gently stroking Emma’s hair.

That was sweet of you, child. We love you and wish you all the best on your birthday. Lots of people do. A clerk from down the hall brought me flowers for you today. Just like, as a present to you, Mama’s going to have flowers put on your grave today. Just like in a few days Brother K. is going to bring back some mourning beads from Hawaii for your grave. I’ve got a present for you too, an idea for putting a tiny dent in the devil’s kingdom that I’m going to put into practice, a small down payment on the debt we owe him for what he did to you. Your friends at Notre Dame have a present too. They’ve rebuilt the playground at our old home in South Bend and Saturday at 11 they’re dedicating it in your honor and flying us out for it.

In our thoughts too for your birthday we give you a hug and kiss. Happy birthday, Betsey.

Oh, Betsey. Betsey.