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Shaking Motherhood to the Core

Rob McGinley Myers

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Eliot McGinley in the hospital
(Sara McGinley)
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This weekend, people across the country are honoring their mothers with cards and brunches and flowers. And rightly so -- mothers take on a large share of shaping who their children become, and these days they seem to be taking on ever more anxiety about all the real and imagined dangers that surround their children. Reporter Rob McGinley Myers brings us a story about a mother who looked a life-threatening danger in the face, and it shook her sense of motherhood to the core.


Sara McGinley didn't want to be one of those hovering, nervous mothers. She believed in letting kids take chances, letting them get dirty, letting them eat food off the floor. And her parenting style seemed to be working: Her son Eliot was the most well-behaved 2-year-old her friends had ever met.

Sara is my wife's sister, so I know Eliot, and I remember thinking he'd grow up to be a monk or something. He appeared so serenely calm and at peace with the world.

"I used to call him my Buddha child," Sara said, "because that's what he was like. I thought that said something about my spiritual grounding, that I would give birth to a Buddha. God, that's embarrassing but true."

But when he was 2-and-a-half, Eliot traded in his Buddha-like calm for non-stop whining and crying. Sara took him to the clinic even though he didn't have any other symptoms. She was afraid the doctor would roll his eyes at her -- just another worried parent. Instead, the doctor told her to get to the hospital as soon as possible. It turned out Eliot had leukemia, a cancer that was clogging his veins with the wrong blood cells.

Sara will never forget when her son got his first blood transfusion. "It was literally like when you have a philodendron plant that is just completely wilted and you give it some water and you can practically watch the plant perk up," she says. "That's what it was like."

Later that day, with his brand new blood, Eliot danced to a song on TV, he played peek-a-boo with a stranger, he interrupted adult conversations -- all things he had never done before. Sara didn't even recognize him.

"I had to come face-to-face with this idea that maybe my awesome parenting wasn't the reason he was a Buddha," she said, "And maybe I suck as a parent now cause my kid's sick."

The extraordinarily calm child she'd known for two years had probably been sick for a long time, and Sara had completely missed it. When they brought Eliot home from the hospital two weeks later, Sara's husband had to go back to his job as an Episcopal priest. He was working 80 hours a week, so Sara was left at home, consumed with worry -- about drug dosages, side effects, germs. She'd once taken an almost political stance against hand sanitizer, but now she asked people to sanitize their hands at the front door. And she began calling the doctor every day.

"I'd call if he coughed," she said. "I'd call if his forehead felt warm even if the thermometer said his temperature was normal." She was becoming exactly the paranoid mother she never wanted to be. "I'd call if he felt cold. I'd call if he said something hurt. I mean I just felt like completely inept, completely clueless and completely paranoid."

She watched as Eliot was put on steroids for three weeks, and her slender, quiet child became a chubby, desperately hungry basket case. He would wake up screaming for hot dogs or pasta multiple times a night, and he demanded that his food be served with exactly the right dish and exactly the right utensil.

"He would literally scream if it wasn't the way he wanted it," she says. "And I was so tired I wasn't going to tell him just eat that food however you want it. I knew he was on steroids. They warned us that it would make him crazy, that he would be irrational and so I fed his every whim."

She fed his every whim in part because, in her darkest moments, she blamed herself for his illness: "How many hours did I spend with a laptop on my lap when I was pregnant? Oh my God, I gave my kid cancer. How many times did I stand in front of the microwave when I was pregnant? I for sure gave my kid leukemia."

Even as Sara worried about what she might have done wrong in the past, she still had to prepare him for the future. The doctors had told her that Eliot was likely to survive this, and she couldn't just pamper him and give him everything he wanted. She had to continue to provide structure and discipline, or she might spoil him for life.

"And it felt impossible for me at that time, in my state of exhaustion and shock -- with me trying to balance how to be a 'good mom' in this situation," she says. "How to raise this kid to grow up and function in the world when all my rules, all the expectations had changed and all the rules seemed different."

But Sara had to get used to the new rules, and the new routines. She had to take Eliot in for his chemo sessions and his spinal taps. "They would take his blood, just see what his blood counts were and then they would put him to sleep. And they do this procedure where they put chemotherapy in his spinal fluid and we'd come back in and we'd have to keep him laying down for a half an hour, I think."

Back when Eliot was still going in for his spinal taps, I went with Sara to one of the appointments. We waited for Eliot to wake up from his drug-induced sleep. "He's just sleeping off the drugs here," explained Sara. "I was just looking at him he's incredibly peaceful and I haven't seen him... I mean, until all this was happening I hadn't watched him sleep in a long time. And he's very sweet."

Just then Eliot woke up. "Hi! We're at the hospital. You had a little nap," his mother says. Eliot whined and Sara comforted him.

Eliot's treatment was organized into distinct stages, and the doctors had assured Sara from the beginning that it would keep getting easier. "And I remember thinking in the hospital, if it doesn't get easier, I can't... I'm gonna fall apart. And then it did get easier."

And it kept getting easier as they approached the final stage of treatment, known as "maintenance." No more hospital visits or spinal taps, just a low dosage of medication. For Sara, it seemed like a return to the normal struggles of typical parenthood. They went in for one last check up before maintenance started, and that day Sara watched as Eliot played in the waiting room.

For months, she'd been suffering through paranoia and guilt for everything that had gone wrong or might go wrong. But that day, in the waiting room, she could finally see her son apart from her responsibility for him. She could just let him be a silly kid. He was playing with a Mr. Potatohead, and she took a picture of him to make sure she always remembered that moment.

"Here we have my bald son, our bald son," she said. "And Mr. Potatohead, who actually had a leg coming out of his ear if I remember correctly. And Eliot was standing there smiling with Mr. Potatohead. And that day was... it was like we made it to maintenance. We... we... we're gonna make it. We're okay."

  • Music Bridge:
    Summa
    Artist: Tape
    CD: Opera (Hapna)

Comments

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  • By Evan Baldwin

    From OK, 03/08/2013

    I can't even imagine what you went through. Though you have been through a lot I wonder if you should have felt so much guilt.
    http://www.hospital-data.com/hospitals/INTEGRIS-CANADIAN-VALLEY-YUKON.html#b

    By Dee Powers

    From Lyndon Station, WI, 06/24/2008

    What a beautiful story, and having gone through what you did, I can have empathy for you. A beautiful child with a wonderful family and extended famly. Thanks for sharing.

    By jennifer suntych

    From Greeley, CO, 05/17/2008

    Rob, thanks for sharing such a love-filled and honest story of motherhood. Happy Mothers Day to you Sara...and to all mothers who give the best we can in each moment...and then sometimes are called to give even more. God bless you and your dear family.

    By JUNE SCHOFF

    From MAUSTON, WI, 05/16/2008

    SARA YOU ARE SO AMAZING AND AWESOME PERSON. I JUST LOVED THE STORY. I KNOW SARA AND HER FAMILY PERSONALLLY. MY HEART GOES OUT TO SARA AND HER FAMILY. IT TAKES A VERY STRONG MOM TO ENDURE SUCH A SICKNESS.AS A MOM - A MOM HAS TO DO WHAT A GOOD MOM HAS TO DO AND THAT IS TO BE THERE NO MATTER WHAT HAPPENS TO YOUR CHILD IN LIFE. I AM ALWAYS TOLD THAT GOD DOESN'T GIVE YOU ANY MORE THEN YOU CAN HANDLE. I BELIEVE GOD HAS REALLY TESTED THE STRENGTH OF SARA AND HER FAMILY. I'M SO GLAD ELLIOTT IS DOING MUCH BETTER. BLESS YOU ALL. LOVE YOU ALWAYS AND FOREVER. TAKE CARE.
    GRANDMA JUNE(NOT REALLY SARA'S GRANDMA-ITS A FAMILY JOKE. ONE I JUST LOVE.)

    By Donna McGinley

    From mauston, WI, 05/11/2008

    Rob, Thank you for concise, well phrased writing. Sara, thank you for sharing your fears as well as the healing.

    By Wendy K

    05/11/2008

    Happy Mother's Day!

    My son was diagnosed with leukemia in Dec of 06, and he is currently doing very well in long term maintenance. This journey is not easy, but as you know life becomes more precious when your child's life hangs in the balance.

    By Holly Butcher

    From Duluth, MN, 05/11/2008

    Sara you are an inspiration!

    By Ann Bunce

    From Stillwater, MN, 05/11/2008

    Happy Mother's Day to a great MOM!!!

    By Sharon Owttrim-Fraser

    From Shediac River, NB, 05/11/2008

    Happy Mother's Day Sara! Our son is 10 years old and recently completed 3 years and 57 days of chemo treatments for Acute Lymphoblastic Leukemia in February. There really is a light at the end of this tunnel. Take care.

    By Emma Maddon

    From New York, NY, 05/10/2008

    Sara, Wishing you and yours a spendid Mother's Day!
    From Emma, fellow mother of a 6 year old son diagnosed with leukemia at age 3.

    By Melissa Vermilya

    From Laguna Beach, CA, 05/10/2008

    Thank you Sara for your touching Mother's Day gift you have shared with me.

    By Jenny Lief

    From White Bear Lake, MN, 05/10/2008

    Happy Mother's day Sara! I'm so glad you got to share your story with the NPR audience. Love to you and your family this weekend.

    By Emily DeYoung

    From North Palm Beach, FL, 05/10/2008

    Also as a mother of a 5 year old with leukemia, your story hit home. We are looking forward to being in "maintenance" by late summer. Congratulations to you, and Happy Mother's Day, with much admiration.

    By Barb Hauck

    From Duluth, MN, 05/10/2008

    You are awesome... that means I am in awe of you.

    By Lucas Kramer

    From St. Paul, MN, 05/10/2008

    With all the love we've got to give, happy mothers day =)

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