How do you stay FUN Mommy when your kid has a terminal disease? How do you stay FUN Mommy when it is YOU who is sick?
As Diane Balke, a Mom of two and a hairstylist was giving me her killer blow-out for an event I had that evening, we discussed split ends (mine) and then moved on to the real stuff (hers).
“How’s Joey?” I asked. Joey is her 12 year old strapping son (a towering six foot seventh grader and a competitive swimmer) who has been dealing with a serious form of Sarcoma since October.
“He is going in for radiation this week for seven weeks, five days a week,” she said with a full-body sigh. This, after a recent 15-hour surgery he underwent to remove the tumor in February. “And by the way, your ends are fried.”
I stare at her. How does she do it? How do you keep on keepin’ on when your whole world has been turned upside down? How do you NOT curl up in a ball and just cry?
Because you can’t.
Because your life as you once knew it, is gone.
Because normal no longer exists.
Because you have other kids and a husband who need you to be strong.
Diane (known to all as “Di”) has had it rough. The same week she found out her eldest son had cancer, her twin sister was diagnosed with breast cancer. Her younger son Pete is autistic, and very close to his big brother. But Diane, a dead ringer for a tawny-haired Sandra Bullock is one tough chick. She laughs hard, she’s a no-bullshit girl. You should hear her take on a doctor’s assistant if they give her the runaround. You are not going to bring Diane down. You are not going to screw over her kid — or you have Di to deal with.
But when no one’s looking, where does she put it?
She doesn’t, she says. There is no time. She’s got her business, and her boys.
“You know what,” she said. “It’s the little things that keep you going. We’re not Jewish — and this woman in town brings us this amazing challah every Friday — and I can’t wait for it. We call her the ‘Challah Fairy.’ Since October, the families in this town have brought us meals four times a week for nearly six months– and it hasn’t let up. THAT is what keeps you going. The incredible gifts and kindnesses that are so unexpected.”
Her son, she says, is fighting cancer with everything he has. This weekend, while undergoing radiation treatments, he is giving a big speech at the Presbytarian Church. She has to keep telling him, “Joey, this is going to be serious. Please don’t get up there and do a standup comedy routine (the verdict is still out – knowing Joey, my bets are on Comedy Central). There are moments, she says, when her son feels so deeply alone, and that is what hurts her the most. He makes jokes all the time, and his favorite T-shirt is his “Cancer Sucks” shirt, but “what goes straight to my heart as a Mom,” she says, “is when he looks at me and says, ‘Mom, I’m just 12.'”
Later that night, after Diane’s magic touch, I walk into the Bat-mitzvah and I spot my friend Christy Markle, a beautiful woman whose smile always lights up the room. Behind her eyes, I also can see her pain. Her 13 year old daughter Emily (one of my daughter’s close friends) is recovering from brain surgery in March, in which doctors removed a small piece of her skull and part of her first vertebrae to make room for her brain, which has defended into her neck. Just teaching her daughter how to walk again, even a simple walk up and down the driveway was a huge feat. Recovery and physical therapy has been a long, arduous process, Christy says. Regaining her balance and stamina has been challenging, and as her daughter puts it: “I will always be dealing with this. It is part of who I am now.”
Those are the magic words: Acceptance. What was, no longer is … life has taken a different path.
Coming to terms with this, Christy says, she has been “tested – and strengthened by her faith … we are unbelievably grateful for the love and kindness of family and friends … As a family, we have found new ways to have fun at home and appreciate each other every day – as we spend a lot of time together.”
Christy has a younger daughter named Ashley, and a wonderful, supportive husband.
Again, how does she do it? How do you dress up, look like a million bucks, trying to fit into “life” again?
“I’m still working on that part daily,” she adds. “But the dedication to my daughter’s health is unwavering. There is no question that it is all a challenge. When people reach out to us it makes such a big difference, because it can be so hard to pull away from managing ‘the moments’ of the day to day. As a Mom, I’m constantly juggling my daughters. The challenge is if Emily is not feeling good, and to get Ashley outside with her friends. Redefining ‘normal’ is a lot of dividing and conquering. Finding the balance for both of my children is a daily hurdle.”
“And what about you?” I ask.
She laughs, the kind of laugh that is fully loaded. “Put it this way, I just got my hair cut for the first time since her surgery. And I just started working out again when Emily is in physical therapy. I needed to force myself to find ways … to ‘feed’ myself. But it took others to remind me about ME. They would bring me food in the hospital to remind me to eat. They would say, ‘Go take a walk. You need it. If you’re stronger, it will be good for both of you.'”
“I had to relearn all these things. When you have a child who is sick, you lose all semblance of normal.”
And your marriage?
“All of this has strengthened us in so many ways. We don’t have the opportunities to connect like we used to — but we know we have to work together, and believe me, we do, and we’re stronger as a couple for it.”
And there’s Jill Feldman, mother of four, who has been fighting Lung Cancer. She lost both of her parents to the disease. All of her four kids are on travel sports teams … they have at least six games a weekend of every sport. And this woman shows up everywhere. She laughs, she jokes, she fights.
No matter what is going on with her health, this Mom is so there for her kids.
“It’s all about my kids,” she says simply.
At a recent event in my town, for an organization she spearheads called Lungevity, I’m not kidding when I say that everyone stopped what they were doing and turned up for the walk/run to benefit Lung Cancer several Sundays ago. Jill got up on the podium and spoke to all of us –Moms, Dads, Kids, Grandparents — discussing the realities of lung cancer and how it affects her life and her children. I had tears in my eyes –so did my husband (Jill’s husband Jason is one of his close buds) — because this beautiful, strong woman with a voice of gold was Ours.
“You know how my family gets through this?” she says. “Through humor. Fun Mommy, we all say, was BLC (Before Lung Cancer). My youngest daughter said, ‘Mommy I love it when you play basketball and soccer.’ My other daughter responded, ‘Oh that was Mom BLC.’ When I have those bad days I don’t hide it from my kids. I let them know. I apologize, but there is no way for them not to see the real me.”
“Look,” she adds, “I am alive, we are living, my kids see that life goes on. I still enjoy everything and put my fears and anxieties in their place. I have to compartmentalize them.” She adds, “Having lost my Dad at 13, I can identify with their anger, fear and loss of innocence.”
My son once asked me, “How do you walk around ‘normal’ when you know you’ve got cancer inside you?”
I answered, “I don’t think about it. I think about you, and your siblings, and that’s what keeps me going. That is MY normal.”
She laughs. “I remember when we were watching the Superbowl, you know the one where the Manning brothers were against each other. And we talked about different things — talent, etc., that runs in different families.”
My middle daughter said, “What runs in our family?”
And the little one said, “Lung Cancer, duh!”
We all laughed. It’s the laughter above all else that keeps us going.”
LB: These are some of my town’s heroes — how ’bout yours? For more information about Lungevity, contact: www.lungevity.org; for ways to help the Balke family with medical expenses (The Joey Balke Fund), contact Diane Balke directly at 847-940-0210; and here is the link to Conquer Chiari: http://www.conquerchiari.org/index.html.