Unearthed: The Notebooks

September 25, 2006 @ 5:45 pm | Filed under: Family Adventures, Leukemia, Little House, Paper & Desk

I found 1997 in the bottom of a box today.

1997 was the year that brought two of the most significant events of my life, and my family’s life. It was in March of 1997 that Jane, then 21 months old, was diagnosed with leukemia. A few months later, in her hospital room, I received a phone call from my wonderful editor at HarperCollins, telling me the Laura Ingalls Wilder estate had loved the sample chapter I had been commissioned to write, and they wanted me to write the Martha series.

The talks about my possibly writing Martha had begun months earlier, before any of us had the faintest inkling that there was something terribly wrong with my sweet baby. I had written a chapter (which later became the ending of Little House in the Highlands) and, huge Little House fan that I was (and am), was immensely excited about the prospect of diving into Laura’s family archives and writing books about her great-grandmother. There were actual letters from Laura in those archives! I would get to read them! I would get to try to write books worthy of being shelved next to hers! It was thrilling to contemplate.

And then one day Jane was covered with bruises, and the whirlwind swept us up and dumped us in a children’s hospital on Long Island, where we spent most of the next nine months fighting for her life.

By the time the call came, she was well into chemo. Her hair was falling out. She threw up all the time, usually on me. She lived on ketchup and breast milk. I was learning how to gauge the degree of her fever by the touch of her hand. She was hooked up to multiple IVs day and night.

I wasn’t thinking about writing any more. What I did was take care of Jane. I slept in her hospital bed with her, I changed the dressing on her central line catheter, I swabbed out her mouth with antiseptic and antifungal rinses. I read to her for hours at a stretch, until my voice went hoarse. I sculpted enough little Play-Dough people to populate, well, a cancer ward. I inhaled the scent of toxins from her skin, I took her for walk after walk up and down the corridor, past the nurses’ station and the other patients’ rooms, dragging her i/v pole alongside us.

Scott spent every minute he could at the hospital, but eventually he had to go back to work. He’d race out to Queens each evening, bringing us dinner (which Jane never ate), clean clothes, a book for me to stare at after he dragged himself back to our apartment at night.

Oh, the nights were the worst. You can’t sleep in a hospital. The lights, and the nurses, and the pumps beeping, and the loud voices in the hallway, and the trash cans being emptied with a bang. I would get Jane to sleep, her poor face paler than the pillow it lay on, a cord snaking out from her chest to a dripping bag on the pole beside the bad. I would watch her sleeping and feel grateful I had been given another day with her, and write about that day in a blank book that my friend Alice had given to me the week the nightmare began.

She knew I would need a place to write about what was happening.

That was one of the notebooks I found in this box today. Between the scrawled notes about which doctors had done what are snippets like this:

The other night her i.v. was beeping; she looked at the pump and announced, “Fusion complete.” Gave “timentin” to her baby. Told Daddy he was her best friend.

*

6:15 a.m. wake up, realize Jane has soaked through all the bedding, both sheets beneath and blankets above. Change her, and then the nurse comes in to say she’s running 100.1 axillary, so could I give her some Feverall. Yeah, right. Try for ten minutes, she pukes up the one sip she swallows, we give up. Jane is now wide awake. I turn on Sesame Street and doze while she plays Barnyard Bingo, using the curve of my body as a recliner.

*

Or this one, dated 9/27/97, which follows a lull:

This has been a tough month. Not just all the inpatient time, but also the deaths of three of our little friends here: Eric, Jen, and Tiffany.

I don’t want to write about that.

It’s official now that I’ll be writing the Martha books. And Jane herself is exploding with new words and new skills. In clinic one day, the two of us sat eating lunch by ourselves. Jane looked up at me and said, “Me have really good time with you, Mommy.” Melt…

*

When HarperCollins offered me the books, I wondered if I could possibly manage to write them with all that we were going through. But the nights in the hospital were so agonizingly long. Better to work, I thought, than to sit there marking the hours by the dripping of the drugs into my baby’s veins. When you spend a lot of time in a hospital, there’s a real danger of getting broody. The worry can consume you. You have to forcefully turn your thoughts to something else. Work helps, if it’s the right work.

Martha was. The folks at Harper sent me a laptop to use at the hospital—awfully sporting of them. And they lined up a researcher in Scotland to hunt up answers to my forty thousand questions, since obviously I couldn’t get out to hunt them up myself. I spent the next two months poring over notes in the dim room while Jane slept the sleep of the drugged, and one night I took a deep breath and started to type.

Loch Caraid was a small blue lake tucked into a Scottish mountain valley. On its shore were a half dozen cottages that had no names and one stately house that did. It was called the Stone House…

…and I was off.

Oh, what Martha gave me during those long, hard nights! Highlands is the story of a little girl running freely on the grass, rolling down hills, poking in the corners of the kitchen, getting into scrapes, doing all the things I was afraid my own wee lass might never have the chance to do. My friend Elizabeth, herself a cancer survivor, recently pointed out to me that I talk a lot about Martha’s hair in that book. She is always shaking her heavy curls off her shoulders. Every last wisp of Jane’s hair was gone by the time I started writing, all those fine golden strands swept away by a janitor’s push-broom.

I found my Highlands notebook in the same box today, crammed with descriptions of houses and furniture and meals and customs. There’s a line about how floorboards often had holes in them near one end, holes bored at the lumberyard so that a rope could be threaded through to keep them stacked for the journey on rough, rutted tracks that could hardly be called roads. Next to this interesting snippet I scribbled a large star and the words, “COULD BE FUN—HAVE MARTHA DROP SOMETHING THROUGH HOLE TO ROOM BELOW.” In the years that followed, I wrote three different chapters involving Martha dropping something through a floorboard hole: twice I had her tormenting a guest by raining nuts upon his wig, and twice I axed the episode as not quite in character. I think somewhere in Highlands she pokes her toe into a hole while her mother is brushing her hair; and in Heather Hills I finally used the floorboard hole to full advantage when she desperately needed to get a message to young Lew Tucker, the blacksmith’s son, in the kitchen below.

I wrote Heather Hills here, in Virginia, and it’s strange to remember the details that took root way back in that hospital room in New York.

More from the hospital book:

November 1997—lost first broviac, got new one.
—finished last IV chemo on Thanksgiving Day
—we are pregnant!

*

December—Bone marrow biopsy on 12/6—still in remission.

*

Feb 98—Rocky. J has fever. Low potassium. Is utterly lethargic.

*

4/23, pretty bad again. Not wanting to walk. I asked Dr. R. if we could d/c the Dapsone. She agreed, somewhat doubtfully.

*

3rd day off Dapsone. Jane jumped out of bed and said, “I would like Daddy’s leftover gnocchi for breakfast.” !! First voluntary mobility in three weeks. We were floored. She devoured a dishful, then two big slices of raisin bread.

*

Best moment by far—I watched her running in circles on our bed, holding a pair of underwear in one hand, a piece of raisin bread in the other [INTERJECTION: WHAT IS IT WITH THE RAISIN BREAD?], singing:

I‘m dancing
I’ll never stop dancing
I’ll never stop eating
I’ll never stop doing either of these things.
I’m having fun
Whoa, I’m having fun

How do I express how moved I was by this, and how grateful?

*

5/20  She has begun to tell long imagined stories. Is also very excited about “her” baby and often kisses my tummy and talks to it.

She saw the word “Kalamazoo” in a book and said, “Look, Mommy! Zoo!”

Oh, and she’s got her curls back.


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Comments

37 Responses | | Comments Feed

  1. Thanks for sharing but if you read all those notebooks you’ll NEVER get packed 🙂

  2. What an amazing girl she is to have gone through all of that. And what an amazing mother you are to have made her so happy during it all. You both really are blessed aren’t you?

  3. I haven’t been reading your blog long, but I still feel as if I “know” you and your Jane. I cried through this post – how awesome where she is today. God is good.

  4. I’m ever so grateful that Jane made it through those terrible days, and that the worry and stress drove you to write instead of driving you to madness. I’ll never read your “Highlands” book in quite the same way again, as images of you with a laptop next to a sleeping Jane will always be in the back of my mind. What a path you took through such a dark time– and all of your readers are the richer for it. I hope all the days to come are easier for you than the days of 1997.

  5. Lissa is packing…

    …and while I’m still firmly in denial mode (I like her in Virginia), I am enjoying all the goodies she unearths in the process. Se sure to visit the Bonny Glen today to read about how God brought a great

  6. You’ve got me in tears. Again. God is so good. He gave your sweet Jane the gift of her life, and he gave us the gift of you, your family and your books.

  7. Thank you for sharing those intimate moments with us! I noticed the dates of some of your entries…my dd was born in Oct. 97. I thought of how lost in my world I was (with good reason with new baby)but it also made me commit to keep those suffering with illness in my prayers. I’m so happy for your family.

  8. Thanks for sharing the days with your beautiful little girl with us. I’m so thankful she has made a full recovery.

  9. I cried through this whole post. It makes my own worries seem paltry, indeed. But, Jove is right. If you keep reminiscing, you’ll never get packed. It’s better to read them on the other end, when you UNpack.

  10. LOL, y’all are hard taskmasters! After packing for twelve hours, pausing only to shovel food into the younguns, can’t a girl take a break? 🙂 🙂

  11. Oy

    Digging around in the basement can sometimes be a tricky thing….

  12. Wow. That must be one of those times when you look back and wonder just how you survived it. Thank you for that beautiful look into a terribly difficult time.

  13. My son was born the same day Jane finished her last IV chemo. What a fighter she is (and her parents ;-).

    My youngest has been officially in remission for 8 months now!

    God is, indeed, good.

  14. What a poignant entry! Thank you for sharing it, and drawing us into that hospital room with you. I must confess I find my heart longing to see a picture of Jane today, just to convince myself she’s really ok.

    Rejoicing at God’s goodness.

  15. What a beautiful post! You never cease to inspire me! Jane (and all of you)is(are) still in my prayers daily! I’m so glad summer/fall of ’98 made us all much happier!

  16. I’ve been thinking “we really should get those Laura’s grandmother books”, but not actually doing it. I am determined to get them now, and will read them with a whole new perspective!

  17. In the absence of a Jane picture, let me assure you that she has a full head of beautiful, thick, honey-colored hair. And she is very much alive–around here, we say she’s “full of life!”

  18. My daughters are all “Martha” book lovers. I know they will be as inspired by the story of the author as they are by the books themselves.

  19. I have been a visitor to your lovely blog for months now but have never left a comment. I wanted to tell you though what an inspiration you are through this blog. I just started “Highlands” with my youngest daughter (which we are enjoying immensely!) and I will certainly be thinking of your family, the ordeal you’ve all been through, and the happy outcome as we continue reading the book.

  20. WOW!

    Just read this. Youll be glad you did.
    And Im ordering the Martha books.

  21. i loved this!! the peek into the life of one of my favorite authours

  22. I’m in tears.

    You could write a book about THAT!

    It’s riviting.

    At least I think so.
    God bless you Lissa and we at ‘glorie’ are praying for you.

    And ‘Jove’ is right.
    You’ll never finish packing if you keep reading your notebooks.
    ;p

  23. We are reading the Martha books in our homeschool this year. Thank you for sharing your story of tragedy & triumph!

  24. This is Bridget’s daughter, Monica. I’m glad Jane is okay. I love your books. This post made me cry. I don’t think any other post on any other blog made my eyes water as much. Please write more books.

  25. Hi there!

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  26. Thank you for sharing… found your blog by hitting the random button on the OA Blog ring… Do you do Ambleside Online?

  27. Wow….I’ve been reading your blog for a month now and have already read one of the Martha books (more being ordered for Christmas!). Thank you for a post that made my heart feel everything you felt in that hospital room. That’s what a truly gifted author does. It also gave me a fresh perspective on what’s been a horrible day with my strong willed little one…the worst day of butting heads is nothing when I realize how precious she is to me. Thanks for letting remember…I’ll be back alot more often! Good luck with your move!
    Hugs,
    Laurel in PA

  28. Dell, that’s Jane in my banner image up at the top–she’s the bigger girl, the one on the left. That photo was taken summer of ’05 on top of a mountain quite close by. 🙂

    Oh, and I have a photo album at the Lilting House–there’s at least one Jane pic there!

  29. Thank you for sharing a very hard part of your life. I read the “Martha” books recently, and your post adds more depth to a wonderful story. I love the “Martha” and “Charlotte” books and all things Laura! Bless you, and I’m so glad that your little girl is doing well.

  30. You’ve got me crying too. You DEFINITELY deserved the break to stop and read some and PLEASE share somemore when you open the box in sunny California!

  31. Hi Lissa, I missed this post (I know, I’ve missed many!). But wanted to say how much I loved it — I knew that she went through a lot health-wise but reading all this really touched me. And I will always, always remember her curls. She’s a beautiful child and you are so blessed to have her. (I’m sure you already knew that but…)

  32. I love the Martha series. Wouldn’t it be interesting to have a book series for her mother as well?

  33. OH, your children are beautiful! I’m so lucky to be sharing a comment wtih you. Since my childhood Laura Ingalls Wilder and the following books including yours (LOL) have been my favorites. Now I’m studing to become a Children’s Writer myself. Thank you for sharing your web-site. Bless you and your family.

    Rebecca in AZ

  34. I love the Martha and Charlotte books! I hope the publishers change their minds. Is there anything we can do to “nudge” them in that direction?

  35. […] • Info on my Little House books (and another post about writing Martha) […]

  36. Wow. I’m crying. Can’t wait to read these…I already own the Rose books, so those will come first.

  37. Have been reading “Little House in the Highlands” to my homeschooled 10 & 12 year old sons. We are on the last chapter and decided after almost 2 hours of reading tonight, we will finish the book tomorrow. The boys are so sad that Lady Flora is in the loch. They have a little sister that has a special doll with matching dresses and they are appalled that Duncan could be so careless with sister’s baby.

    I thought I would look online to see which book comes next in the series… I only stumbled upon this book while looking at the “Rose Years” series in the library and now I want to read the whole lot to my children starting with the Martha Years!

    I was raised in Mansfield, Missouri and attended the Laura Ingalls Wilder Elementary School as a first grader. I have known and loved her work since a child. After many years away, we moved our family to Mansfield, MO just 3 months ago and I knew that after an initial visit to the Wilder House and Museum, that my boys would love to know the story of the women who made this town famous. When we walk past the square or listen to the train go by, it’s wonderful to know that we are living just a breath away from history itself.

    Thank you for the making the story come alive, Melissa! It was so heart-wrenching to read your story here. I will tell my boys in the morning what I have learned about you, the author. I so appreciate your beautiful talent and hard work.

    From one homeschooling mom to another ~
    Thank you!
    Melanie