When a small child is diagnosed with Type 1 diabetes, some parents put their own dreams aside and focus on their child. But D-Mom Kim Savage did something else — she embraced raising her young son with Type 1 diabetes while going full on chasing her dream, too. Now, her son with diabetes is a teenager and her career is on the brink of superstardom thanks to a three book deal with the prestigious publishing group of Farrar, Straus & Giroux/Macmillan. Look for Kim Savage’s name. We think its going to become well-known in the booming young adult literature market. Here are her thoughts on having it all despite diabetes (oh, and on Gary Hall’s strong shoulders too).
You are a “long-time” D-mom now. Will you share your child’s diagnosis story with us?
It was Halloween 2005, and we had to stop trick-or-treating every few houses so that Jackson could peel down his Power Ranger costume to relieve himself in a bush. Two nights later, he started vomiting. His skin was the color of lead. I started Googling like mad, and told my husband, “I think Jackson has Type 1 diabetes.” He said I was nuts, which was the response I was hoping for. The next morning, Jackson’s pediatrician tested his urine and blood; he was a young doctor, at the start of his career, and visibly alarmed. He sent us to Children’s Hospital. I sped into Boston with Jackson lying across the back seat, leaving panicked and eventually swear-y messages on my husband’s voicemail the whole ride. Jackson was diagnosed with Type 1 diabetes on November 3, 2005. He was three.
For how long have you had the dream of writing fiction? When your son was diagnosed, did you ever think that dream was dashed?
I wanted to write fiction since I was a kid, but never knew when I would start. I’ve had careers in journalism and academic administration, and was consulting for Boston University when Jackson was diagnosed. I quit shortly after his diagnosis. Fast-forward five years. I signed up for a writers’ conference. After attending workshops, having my work critiqued, and connecting with other writers, I was on fire to start writing.
Still. Jackson felt like an extension of my own body. Even my husband, who was wholly involved in Jackson’s care, didn’t know the daily nuances of Jackson. The were so many small things that affected his blood sugar and insulin resistance -if he was anxious going into a new playdate, running high from fighting the virus going around class, how to bolus for peanut butter – all the variables that I weighed when I decided to override or undercorrect. How was I going to put all this on a caregiver?
On the last day of the conference, the keynote speaker was Cynthia Lord. She’d just won a Newbery for her debut novel, Rules.. Rules is about a girl whose brother is autistic, and the story is inspired by Cindy’s autistic son. The only time she had to write Rules was in the early morning, before her son woke. About writing, she told herself: I have to do it, or stop wanting it.
I knew I would never stop wanting it.
Tell us about your book that’s coming out.
After the Woods (FSG/Macmillan, Winter 2016) is a psychological thriller about two friends in the aftermath of an abduction, where Julia risked her life to save Liv and spent two terrifying nights in the woods before she escaped. The story starts one year later, and Liv is starving herself, doing drugs, and hooking up with a violent new boyfriend. A dead girl turns up in those same woods, and Julia’s memories resurface, as do clues unearthed by a reporter that connect the girl with Julia’s abductor. As the truth becomes clear, Julia realizes that risking your life is only one kind of courage.
After the Woods is about bravery, the kind that people don’t immediately recognize. It will be dedicated to Jackson.
And there are more coming?
These Are Notes You Didn’t Get comes out in 2017. It’s about two sisters who step off a cliff into a quarry lake with rocks in their pockets. It’s told from the point of view of their next-door neighbor Ben, who loved one of the sisters. Ben gets a post-mortem package of letters, which sends him on a mission to learn the truth about the girls’ last summer. Think The Virgin Suicides meets Then Again Maybe I Won’t, meets Thirteen Reasons Why.
These Are the Notes is close to my heart. It’s a local story for me (the town of Bismuth is based on my hometown), and is semi-autobiographical. I know its characters intimately. It’s really about the male gaze, which I’ve been wanting to write about since I read A Room of One’s Own. And yeah: the rocks in the sisters’ pockets are a humble homage to Virginia Woolf.
Now I’m writing a story set in Jonestown, Guyana in 1978. The research is all-consuming. Being steeped in the darkness of Jim Jones every day is working my compartmentalization skills.
Next year is going to be intense for you, I would think. Will you be on book tours? How will parenting a child with diabetes fit into all of this?
My regular writing day starts the second the kids get on the bus and ends when school ends. I pick it up again after bedtime (specifically, in bed). If and when I travel more, I’ll be cobbling some patchwork care scenarios that involve my husband, a trusted sitter, friends’ parents, and constant contact via a brand new iPhone he doesn’t know he’s getting.
I’d like to pretend that, at almost 13, Jackson suddenly has more freedom that translates into more freedom for me. The truth is, I’m still very involved in the daily stuff. Science has proven that the teenage brain—in particular, the frontal cortex, responsible for reasoning and impulse control—doesn’t fully develop until your twenties. That’s a lot of years of bolusing and site changes. Add confusion from wonky blood sugar to the mix, and you’ve got reduced capacity for decision-making into college and beyond. Unless you plan to helicopter your 20 year-old, you’ve got to work on building character to make those decisions fall on the right side more often than the wrong. That’s been my focus with Jackson since early on.
If a parent told you they had to quit on a dream for the sake of their child’s diabetes, how would you respond?
That question breaks my heart. Because I get it. I powered-down too, but I could have started writing sooner than five years into his diagnosis (and I wish I had).
So many kids have their “thing,” be it life-threatening allergies, asthma, Aspergers, celiac (ok, 11% of our Type 1 kids, including Jackson, have that too). Granted, few of these “things” require the constant vigilance Type 1 diabetes requires. But for us, putting it in that context, for your kids and everyone else, helps a ton. Jackson knows Type 1 is his “thing,” and it’s not going to stop him from reaching his dreams. If I let it stop me from reaching mine, what kind of example have I set?
I would also say this: if you can, incorporate some aspect of Type 1 diabetes into your professional life. Volunteer for the JDRF. If you’re a creative sort, make Type 1 diabetes-related art. Pen an op-ed. Tell your officemates to expect you’ll come knocking every October for Walk donations. If you don’t embrace it, you run the risk of resenting the space it takes up in your life.
Who is your role model writer? And your role model diabetes world person?
My professional role model is Tina Fey. She attributes her success to ignoring the voice in your head that says “Maybe I’m not quite ready.” To that, I would add, “Maybe my child’s diagnosis is the universe telling me this isn’t the right time.” Say yes, and you’ll figure it out afterward. Saying yes has been my MO [motto?] for years, but Tina articulated it for me.
Also, Tina wrote one of my favorite quotes that I will appropriate and customize for the Type 1 diabetes crowd:
“And when he one day turns on me and refuses to test his blood sugar, and throws his kit at my feet in front of Hollister, give me the strength, Lord, to yank him directly into a cab in front of his friends, for I will not have that shit. I will not have it.”
As for Type 1 diabetes role models: we met Gary Hall Jr. when Jackson was a JDRF Childrens’ Congress delegate in 2011. He was generous with the kids’ questions, and his stories of coping with Type 1 diabetes as an Olympic swimmer are remarkable.
Also: his shoulders. Sorry, I’m human.
What’s your next dream? (Because we’re betting you’ll make it happen.)
My last nine birthday candle wishes have been for a cure. I know it’s coming, as long as JDRF continues supporting the science.
I have a dream that relates to a pet-peeve. Having been a reporter, nothing galls me more than when journalists use the word “diabetes” without distinguishing between Type 1 and Type 2. Jackson plays competitive lacrosse, hockey, tennis, and swims, all year long. He’s the kid who orders salad with chicken when his buddies get pizza. He is strong, fit, and makes good health-related choices. Yet he still faces biases wrought by inaccurate reporting by major news organizations that should know better. Also, I believe that imprecise language negatively affects funding for a cure, as adults hear and read sensational headlines that link “diabetes” with obesity in teens and think all diabetes are the same. Gah. It drives me nuts. So I guess I have a dream that everyone will come to understand that our kids have an unpreventable autoimmune disease. Just that.
Oh. And I’d like to see my books published in Estonia, where my father’s family is from. Is that weird? Probably.