Randi Redmond Oster - Questioning Protocol: How One Mom Dispensed Equal Doses of Humor, Humility, and Corporate Smarts to Help Her Family Navigate Their Health Care Crisis

Questioning Protocol

by
Randi Redmond Oster

Copyright 2014 by Randi Redmond Oster

All rights reserved. This publication may not be reproduced, stored in a retrieval system, or transmitted in whole or in part, in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise without the written permission of the author, except for the inclusion of brief quotations in a review.

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ISBN 978-0-9899120-0-6

ISBN Paperback: 978-0-9899120-0-6

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Library of Congress Control Number: 2013949300

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Well Path Press

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Fairfield, CT 06824

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10 9 8 7 6 5 4 3 2

HERO

Words and Music by WALTER AFANASIEFF and MARIAH CAREY

1993 WB MUSIC CORP., WALLYWORLD MUSIC, SONGS OF UNIVERSAL, INC. and RYE SONGS

All Rights on behalf of itself and WALLYWORLD MUSIC Administered by WB MUSIC CORP.

All Rights for RYE SONGS Administered by SONGS OF UNIVERSAL, INC.

International Copyright Secured. All Rights Reserved.

Used by Permission of ALFRED MUSIC and Hal Leonard Corporation

SMILE

Music by Charles Chaplin. Words by John Turner and Geoffrey Parsons.

Copyright 1954 by Bourne Co.

Copyright Renewed

All Rights Reserved. International Copyright Secured

ASCAP

Disclosure: To protect their privacy, I have changed the names of most people in this book, including all doctors. I have not altered the names of family members, Gary Kempinski and Mark Grashow, among a few others.

Disclaimer: The information in this book is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. All content, including text, graphics, images and information, contained in or available through this book is for general information purposes only.

To my wonderful husband, Steve, whose love, support and belief in me have made my dreams come true.

Lets go to Wild Rice for lunch, Mom, Gary, my 15-year-old, too-skinny son insists before he even sits down in the car and closes the door. I start driving before my son belts in; otherwise the other moms will start honking. I am in the high school pickup lane and Gary just finished taking the PSAT, a test that predicts college placement. I bet it is high anxiety day for all these high school parents, waiting in line like me. Were in Fairfield, on the gold coast of Connecticut, a place where status and college and money seem to be key measurements of success. Im afraid Ive become a reluctant participant.

We live a lovely lifestyle in a 4,000-square-foot colonial on two acres with a heated pool and garden in the backyard. Its a world away from the two-bedroom, one bath apartment I grew up in in the Bronx. On the surface, our family looks more or less like the other Fairfield folks: friendly, fit, courteous. But inside Ive retained my Bronx roots: straight-talking, tough and skeptical. I know that the grass is greener over here, partly because there is grass and lots of it, with manicured lawns and people who arrive weekly to care for them. I have people too.

When I was young, I remember reading descriptions of spring where the air smelled like perfume. But I doubted the smell of flowers could really overtake bus-exhaust fumes. For me, as the weather got warmer, the stench of the garbage increased outside our building. When I was a little girl, I once smelled a rose on a fence by a private home some blocks from my apartment building, and the scent was faint but beautiful. But youd need a lot of flowers to cover up the smell of a busy city street in the Bronx.

These days, I live on an officially declared Scenic Road. Across the street is a farm with a barn from 1790 that still stands. Some trees are clearly as old as the 1830s houses they surround. Horses graze in the fields around many homes in my neighborhood. Stone walls, just like in the Peter Rabbit story books, separate each property and are a backdrop to foxgloves, tiger day lilies and dog-wood trees. Now on spring days, I drive home with the sunroof open and realize its true: After a long hard winter, magnolia trees, the golden forsythia bushes, the colorful tulips and the grass growing greener serve as natures air freshener. Inevitably, I take a deep breath and feel such gratitude for how far Ive come.

As Gary belts in, I feel a similar sense of gratitude. I appreciate that I can afford to take him to Wild Rice, his favorite Japanese restaurant. Growing up, my mom found going out to lunch too extravagant. If we did buy lunch, wed go to Liebermans deli for a grilled hot dog with mustard and sauerkraut and greasy fries to go. Wed eat them while watching soap operas in front of the TV at home. I preferred not eating in public with my mom. Like many teens, I was embarrassed; I wanted to be with the cool kids. Part of my excitement of lunch with Gary is that he is still willing to be seen in public with me. (Or he is just willing to be seen with me because the trade-off of Japanese lunch is worth it.) No matter. As Gary opens the door to Wild Rice for me, the waiter stands by the entrance holding two menus and says hello. We ate here last week and probably the week before. He seats us at our favorite table by the window.

The regular? he says, with a warm smile. I know, no seeds. The waiter knows about Garys disease because Gary told him. This candor is a consistent trait in Garys personality and it seems to serve him well. The fact that even the waiter knows not to serve him seeds proves Gary is becoming a self-advocate. He is growing up. I am so proud of him.

Gary gives a wide smile and a nod back. Garys smile lights up my heart. For three years now hes had Crohns disease, a chronic digestive disorder that can send him to the bathroom 20 times a day with abdominal cramps that double him over in pain. At first, to attempt to reduce his symptoms, hed barely eat. With so little nutrition in his body, exhaustion was a daily obstacle. Now, hes learned how to keep the Crohns in check by eating right. He can make it through the school day, play on the tennis team, be active in activities and not even need a nap.

Gary picks up his chopsticks and nibbles on the pickled carrots and gingered cabbage on the table. I blurt out, How was the test?

Fine, he says.

It is the typical teenager monosyllabic response and it drives me crazy. Its not like we have to talk only during a commercial break, like I did with my mom. I want details! But I decide not to push too hard, yet. So I ask about something he is excited about. Whats going on with the money for the water pump for South Africa?

It is really tough, Mom, he mumbles. So much for my hopes of generating enthusiasm. The kids in the club have a lot of fund-raiser ideas. But we need $14,000. That is a lot of bake sales. He looks up at me like I might have an answer. I dont. I pick up my chopsticks and munch on some carrots as well. Looking out the window of the restaurant, I remember the last time I tried to get my hands on some money.

Three years ago, around the same time we learned about Garys Crohns diagnosis, my husband, Steve, was laid off as a hospital administrator. We scoured our budget and eliminated expenses. Easy hits included: no more extended cable channels, no home newspaper delivery, no more phone line with the dedicated fax machine. The small dollars really added up. To make ends meet I worked triple hard growing my young business selling long-term care insurance. Still, I wondered how we could maintain the same lifestyle and manage financially. I remember sitting on our deck, worried. I was fretting about not being able to send my two sons to camp the following summer as well as the other financial changes wed need to make. I watched Gary search for frogs in our backyard wetlands, his favorite pastime. Suddenly, my Bronx roots kicked in. My childhood taught me to adapt to circumstances. I grew up playing hand-ball, not tennis. I learned to ride a bike in a crowded parking lot, not on a cul-de-sac. By age 10, if I wanted to go to a movie, Id take the city bus, by myself.