Hello Friends,
Since my last entry, Lulu’s counts dropped even lower, which was unexpected. We had taken her off of her daily chemo, but she was still getting Bactrim two days a week and methotrexate once a week. The first is to keep her from getting infections, and the second is another chemo drug. These proved too much for her already falling counts, and her ANC (fighter white and red blood cell counts) dropped into the low 100’s. A normal ANC is over 1500. Needless to say, she was quarantined until further notice.
I was 3 days into a healing cleanse, our winter launch was a few days later, and Jimmy was deep into work. My usual response to an unexpected storm cloud like this is slight panic, wondering how I’ll work, what we’ll do at home, how I’ll get to the grocery store, etc. But Lulu was absolutely thrilled to be on lockdown, and spend time at home. Her attitude must have been contagious. Instead of my usual coping through the 5 steps of grieving, I jumped right to acceptance. There was something in her heart that reached out and touched mine in a way only a parent can understand.
We were instructed to take her off all medication. She was home for 3.5 weeks. The most interesting thing about this time, was watching my little Lulu return to me. Every day she was off the medication, I could see the fog lifting. Slowly but surely, her sweet spirit was fighting its way back! The relief and joy in seeing the ‘real’ her again, combined with precious time together turned out to be the best Christmas gift I could ever have asked for. I was falling in love with my Lulu all over again. My little girl was still in there after all.
There was even a shift in her voice, which went from almost foghorn to tinker bell. The OCD dissipated into near nonexistence. Her babbling became less manic, and more bubbly: “Everybody makes up words Mama, China people, Mericans, even people who can’t talk! They make up words with their hands. You and me too, we make up words!” She is fiercely funny, and can deliver a line in such a dead-pan way, you’d think she was a 25 year-old comedienne. After asking her to clean up her art area (she’s since learned the word chaos) she says: “I just cleaned up this mess, am I the maid here? I don’t think so. I don’t want to have to clean this mess up again. Good grief!” You may be thinking she’s mimicking me here, but she’s not. She ends with a knowing smirk on her face, fully aware of how funny her faux tirade is.
We watched girly movies, cuddled, made art instillations and stayed in our jammies for 3 days in a row, just because we could. Jimmy’s schedule let up the last week, and he and the kids bedazzled and holidazed the house magnificently. I didn’t grow up in a house where we decorated for the holidays, and I truly appreciate that Jimmy cares so much about making this a tradition for us.
Lulu returned to school late last week, just in time for her holiday concert. As the three of us sat in the audience, I fought back the big ugly cry that snuck up on me as I watched her on stage. There was my beautiful little girl with her newly sprouting hair, dressed in a green and black vintage-y dress, with a huge black flower in her headband singing her little heart out. I thought back to where we were last Christmas, and where we are now. The feeling of gratefulness washed over me as if someone had dumped buckets of warm water over my head. Thank you, thank you, thank you God and universe for saving this precious soul.
The holidays are upon us, and we couldn’t be happier. Maybe every cloud really does have a silver lining. Maybe we can forget the misery but remember the lessons. Maybe we can minimize the suffering and expand the laughter. Maybe, just maybe, hope will reside in us permanently. For now, maybe feels pretty grand.
Enjoy this audio clip of Lulu singing her Christmas song through the link below (If Cindy Lou Who could sing, this is definitely what she would sound like!)
Lastly, I’ll leave you with a very important piece of advice from Lulu:
“Never, NEVER run with your hands in your pockets!”
http://chirb.it/g42rDv LULU SINGING CHRISTMAS IS A TIME FOR LOVE
Love, and Happy Holidays,
a.l.l. of us
LYRICS – Christmas is a Time To Love
Christmas is a TIme, Christmas is a Time, Christmas is a Time to Love
We often start to worry, and people get upset when things don’t all go right on Christmas Day
What we should remember, in all the push and shove is Christmas is a time to love
(repeat chorus)
Maybe things don’t sound right, or look the way they should
and maybe they’re not perfectly in tune …
It really doesn’t matter, let’s keep our eyes above
’cause Christmas is a time to love
(repeat chorus)
