Chapter 8
Kelsey sat down and closed her eyes, trying to think calming thoughts. She pushed all our fears and nervousness down into a little hole. Opening her eyes, she knew she was ready.
Congresswoman Evelyn LeMure, the committee chairperson, banged her gavel, calling the meeting to order.
"The purpose of this hearing is to determine how best to assist the primary caregivers of terminally ill patients. As you know Bill 478 will be presented on the floor of the House in two
weeks and these hearings are being held in conjunction with this bill. Our first speaker on this subject is White House Deputy Press Secretary, Kelsey Saufl. Ms. Saufl's mother suffers from
a terminal form of bone cancer. Ms. Saufl"
Kelsey took a deep breath and began her remarks.
"Good afternoon, Madame Chairperson, members of the committee, I am pleased that you have asked me to speak to this illustrious body. Ten years ago, my mother was diagnosed with colon
cancer. After going through an extensive round of radiation therapy followed by chemotherapy treatments, the doctors diagnosed her as cured. For seven years, she remained cancer free. "
"One year ago, my mother phoned me with the news that her doctors had found a form of sarcoma cancer. Upon further analysis, it was determined that the cancer had already entered her
skeletal structure. Because the cancer was so advanced, they could not operate. Having received chemotherapy once, her body had built up an immunity to the chemicals so that treatment was
out of the question."
"When I asked her doctors what course of treatment they intended to follow. Their response was for me to take my mother home and make her as comfortable as possible. She had maybe six
months to live. That was a year ago and I am here to tell you that she is still alive."
"My mother has only two wishes left to fulfill in her life. To see me get married to a nice man and to die at home. While I cannot guarantee that I will marry someone before she passes away,
I will do everything in my power to make certain that her final wish is granted and that she is at home to draw her final breath."
"Mom's care is not inexpensive. She requires a nurse to come in every day and monitor her vitals, administer pain medication and take care of her other daily needs. A hospital bed is required
for her as is a wheelchair. My home had to be equipped with a special ramp to accommodate her wheelchair along with other items to make it possible for her to take a shower and use the
washroom."
"We have had to use the money that my mother received from my father's life insurance policy to pay for medicine and care. Some of her necessities were covered by her insurance plan, but
those that weren't add up to over $5000. This is considered a small fortune to the average American. Please do not think that I am complaining about the amount of money we have spent on
my mother's care. I am not. But there are Americans out there who spend $5000 a day caring for their terminally ill parents and children. And if you asked them if they would change the fact
that they have agreed to care for their patients, they would probably answer the same way I am today…no."
"As a child, my parents taught me many things…how to tie my shoes, ride a bike, drive a car. But the most important lesson I was taught was to honor and respect my parents. How can I
look the woman who gave me life in the eyes and tell her that I cannot fulfill her last request? I want my mother to die peacefully, surrounded by her daughter, her friends, and her books. I
cannot give that to her if she isn't in my home. Yes, I chose to take on this responsibility, but should I be punished for it? Should I not be able to claim my expenses? Should I have to turn
my back on the only family member I have left in my life? I ask you today, to consider the needs of those Americans who cannot afford healthcare or who can just barely afford their health
insurance. Consider the needs of a terminally ill patient who needs the support of their family."
"Hopefully, you will never experience the sorrow and despair that comes with knowing someone you love is going to die before their time. My mother is 55 years old and she will probably
never see me in my wedding dress or meet her grandchildren. I ask you to think of all the Anne Saufls in this world when you consider the proposal before you. Thank you."
Leo's office erupted in cheers the moment Kelsey finished her statement. As Kelsey answered the committee's questions, Toby glanced over at Anne and saw the tears that were falling down
her face. He pulled a handkerchief out of his pocket and handed it to her.
"Thank you, Mr. Ziegler," Anne said as she accepted the handkerchief.
"You're welcome and please, call me Toby."
"All right, Toby. And you have to agree to call me, Anne."
"Okay."
"Did you write that testimony for my daughter?"
"I only fine-tuned what she already had started," he responded.
"My daughter is pretty remarkable," Anne commented and then turned her attention back to the television.
"That she is," whispered Toby.