Christianne Balk is a poet, mother, and advocate for her grown daughter with Cerebral Palsy. You can find her online here. Her new book of poems, The Holding Hours, is now out.
Suzanne: Thinking back over your time with your child, can you tell me how your perspective has changed?
Chris: At first, Bella was mistakenly diagnosed with a rare syndrome, a neurologically devastating condition. We were in shock. Terrified. We didn’t dare tell anybody. A few months later, we saw a geneticist who disagreed with the first diagnosis and said, basically, “don’t know,” as in “we don’t know what she has, her muscle tone is very low, we don’t know why, or what the outcome will be, or if she’ll ever walk or talk or read.”
Not knowing was very hard. I suspect the first doctors we saw were trying to help us by giving us a name for what was going on. Unfortunately, without meaning to, they also deeply traumatized us. Reading Stephen Levine’s Healing Into Life and Death helped me learn to live with “not knowing.”
Two years later, we moved to Seattle and saw a doctor at the University of Washington. She told us our daughter most likely had Cerebral Palsy (CP). This opened a lot of doors … gave us an accurate and known diagnosis and a community of other families living with similar issues.
Suzanne: Can you tell me more about your early years and changes in medical awareness, your perspective, etc.?
Chris: For the first few years it was hour by hour survival. Bella looked normal, aside from her extreme low-muscle tone. She was a happy baby but she’d collapse unexpectedly. A trained “spotter” had to be with her, to protect her from being injured. And she wanted to try to move, to climb up, commando crawl, and explore everything! The older she got, the more she fell and the risk of injury increased.
After receiving the CP diagnosis, life became day by day survival. It was hard to imagine any sort of future. One day a wheelchair technician made an off-hand comment in response to how quickly Bella learned to drive a mini-motorized car. The tech said something like “give me a call after she gets her PhD in mechanical engineering.” I was delighted – not because I expected her to get a PhD – but because someone actually mentioned that she had a future.
The mini-motorized car, which was a plastic shell shaped like a tiny red roadster-jalopy attached to a toddler’s power chair, allowed Bella to move around the Montessori preschool playground alongside the other kids. Just one of many creative accommodations her team figured out, to help her attend school alongside normally developing children.
We desperately needed help from the state – respite care, etc. But every time I called DDD, they said their case load was closed. With the encouragement of two other mothers, I finally took DSHS to court. Over the years, I’d collected handfuls of dog- eared index cards with names, dates, denials. The administrative judge took one look and said “I’ll give you ten minutes to work this out by yourselves.” Then he left the room. I was scared. There were 4 or 5 DSHS administrators from Olympia in suits facing me across the table. I had no idea what to say. I just handed them this wad of crinkled, smudged index cards. After a moment, one of them looked up: “We’ve made a terrible mistake,” he said. Bella began to receive services after that.
Another thing that helped was taking Bella to our local neighborhood playground. She loved to watch the other kids swing and go down the slide. She’d laugh and giggle and they’d show off for her and come up to talk. Bella’s always loved being with other people and I began to see that she could see beyond herself. One of her physical therapists called this “cognitive overdrive.” I have no idea what that means but I love the sound of it.
Suzanne: What would you say to a family whose child was newly diagnosed with a similar health issue as your daughter?
Chris: I’d mostly just Listen—to learn the child’s and the parent’s strengths. That’s what we can build on. That’s what helped me through my hopelessness. Every one of us has gifts, no matter how disabled we are. Our health and education systems are often deficit-based, very negative. One of the challenges as a parent/ advocate is to be open about your child’s weaknesses – so they can get the support and services they need – and, at the same time, to notice and nurture your child’s strengths.
Suzanne: Who or what has been the most helpful / least helpful to you over time as far as support for your life circumstances?
Chris: My husband, Karl, is a most amazing father. He has this beautiful bond with Bella. I’m also grateful to the counselors from Puget Sound Counseling Center. And other parents whose kids have disabilities and who share their stories.
Suzanne: How has your child changed over time? Is she more able to care for herself?
Chris: There’s still the risk of falling. But she’s stronger. After eight years of hands-on physical therapy, Bella gained enough core strength and hand strength to walk in a walker. She now uses quad canes inside, a walker outside, and a power chair at Shoreline Community College -- where she’s about to receive a certificate in drama.
Suzanne: Now that she is 28 years old, what do you still do as a caregiver?
Chris: Bella’s caregivers help her with all her activities of daily living -- personal care, transportation, household work, cooking, shopping. I train all her caregivers. She has a supportive community at Shoreline CC. She takes the ACCESS bus provided by Metro.
Suzanne: What are your biggest hopes and fears for her?
Chris: I would love to be more friend/mom and less caregiver. My hopes are that she can find a community based job, that she stays involved in community with friends and meaningful relationships. She is connected to her church and I hope she has this for as long as she wants.
Fears: It is a scary world! I hope all folks with disabilities can have the benefits they need. I worry about how to create a structure that will protect her. I worry that she might fall and be injured.
Suzanne: How do you provide for that when you are gone?
Chris: We are involved with Lifespan; it’s an organization that helps parents plan for care after they are gone. We hope Lifespan continues. We have created a special needs trust. My husband works an elder law attorney, which is helpful in understanding the legal system, but he doesn’t do our family work. We consult outside attorneys for that.
Suzanne: What are her hopes and fears?
Chris: Bella loves meeting new people and working with kids and she loves being a theater director. She enjoys swimming and picnics. Lately she’s talking about living in a house with more roommates, a group home perhaps.
Suzanne: What do you want me to know that I haven’t asked about?
Chris: I think facing serious illness or disability – one’s own or a loved one’s, especially a child’s – thrusts us into a spiritual dilemma. To learn that someone you love may not get a fair shake in life – sucks. It broke me wide open. Looking back over the past 28 years I can see how this also “let the light in,” to paraphrase the Pat Schneider (author of How the Light Gets in: Writing as a Spiritual Practice.) It’s hard to see these hour by hour, day by day.
Suzanne: As an artist, how did you carve out time?
Chris: With difficulty. After Bella began to receive services from DDD, we were able to find caregivers for a few hours a week. I’d go down into the basement room and write. Earplugs and noise-cancelling headphones help. My husband has always been supportive. It’s easier now that we have other caregivers and my own work as a caregiver for Bella is partially reimbursed by DSHS.
It’s hard to think about these things when you are trying to survive hour to hour. I’m impressed with Caregifted – it gives caregivers time to catch their breath. You can’t integrate or write about this when you are in survival mode.
RESOURCES: A list of books that Chris found helpful, especially in the early years of
Stephen Levine's Healing Into Life and Death; Marc Hudson's Journal for an Injured Son; Thich Nhat Hahn's Call Me By My Own True Names; Peggy Shumaker's Just Breathe Naturally; Stephen Kuusisto's Planet of the Blind; Kensaburo Oe's Teach Us to Outgrow Our Madness and A Personal Matter; Michael Berube's Life as We Know It; Emily Rapp's The Still Point of the Turning World; Ed Hirsch's Gabriel: A Poem; Pat Schneider’s How the Light Gets In: Writing as a Spiritual Practice.