Individuals who are LIVING, BREATHING and SUCCEEDING as Caregivers are true warriors to all of us with cystic fibrosis.
Parents, siblings, extended family members and good friends all offer encouragement, a smile and support just by being there. Caregivers also include the health care team—the doctor, nurse coordinator, respiratory therapist, social worker and dietician—that heals, nurtures and educates people with CF.
April 2010
“You never completely get over the loss of a child. You learn to live with a broken heart, and you try to stay connected to family and friends.”
I think every family who has a child with CF goes through a time when they have to decide if they want to be public about it — who they want to tell and how involved they want to be with the CF community. Many kids don’t want to be defined by CF or be treated differently. That’s how our daughter, Angela, felt about it.
So, Angie had a “normal” life. At least, it was as normal as it could be. Kids with CF humble me with their discipline and courage. Sure, Angie was discouraged sometimes, but I never got the sense that she felt life was unfair. For most of her life, Angie thrived. After being diagnosed with CF at three months of age, she was not hospitalized again until she was 18. In high school, she was a cheerleader, an honors student, and had an active social life.
We worked with wonderful caregivers at the University of Minnesota. Dr. Warren J. Warwick believes in a very structured approach. He says, “You’re always in preventative mode. Don’t skip therapies, even when you feel well.” My wife Linda and I followed his advice. I was up at 5:30 a.m. every day to get Angie’s 60-minute therapy done, and we had a similar routine every evening. If she had a cold or more, we did therapy sessions three to four times per day.
We lost Angela at age 21 in 2003. She had complications with a bowel obstruction that resulted in surgery. Within hours of her surgery, she developed a sepsis infection that spread to her lungs. We stayed with her for 86 days in the ICU, with her on a ventilator and heavily sedated. Family and friends came daily to show their support and love.
During and after that experience, I decided that we would not keep a low profile any more. In 2003, we started the Angela Warner Foundation to support CF research. We started the Angela Brooke Warner Scholarship Endowment at the University of Minnesota in 2005. In 2008, we completed the Angela Warner Children’s Memorial and Prayer Garden at Gethsemane Cemetery in Minneapolis, Minn. It is a place comfort and peace for people who have lost a child and has a special area of dedication to those who have lost their battle with CF.
When Angela was diagnosed with CF, our world changed forever. But we had a full life, too. Angie was her mom’s best friend, and Angie and I shared a love of sports and enjoyed our special walks along Laguna Beach in California. Angie was a wise soul, and during those walks over the years, we would talk about the stars above and the ocean life below. As she matured, we also shared thoughts on life, mortality and eternity.
You never completely get over the loss of a child. You learn to live with a broken heart, and you try to stay connected to family and friends. That’s why I wrote a book, Walks on the Beach with Angie: A Father’s Story of Love, about our experiences. It details her 86 days in the ICU, but it primarily tells Angela’s remarkable story. Finally, the book shares our reflections on coping with enormous loss and how to move forward with life. I hope that it can help other families who are facing the similar challenges.
For more information about our activities in the CF community, please go to www.angelawarnerfoundation.org.
Favorite Food: Italian
Favorite Holiday: 4th of July
Favorite Pastime: Fantasy Baseball
Favorite Movie: Godfather I and II
Favorite Music: Neil Diamond
Favorite Color: Blue
One Word that Describes You: Goal-Oriented
Role Models: Ronald Reagan and Sir John Templeton
Words of Wisdom: The Serenity Prayer
Dream Vacation: Month touring French and Italian wine countries
You can find Don on: Thinking about it
July 2009
“You come to love not by finding the perfect person, but by seeing an imperfect person, perfectly.” (Sam Keen)
I first met my husband, Mohammad, over the Internet in 2003. We spent long hours chatting, both over the phone and online, and after three short months, I made a trip to Chicago to meet his family. In him I found a very wonderful person who, despite his ill health, inspired me in ways I never thought possible. Shortly after my visit, we married. It was then, when I became Mohammad’s wife, that I realized the great responsibility of his illness and joined him in his fight against cystic fibrosis.
With our CF center two hours away from our home in St. Petersburg, Fla., and Mohammad bed-ridden and unable to work, the everyday fight still proves to be difficult. Struggling to pay the bills and make rent, I am constantly juggling the roles of caretaker and homemaker. I have to be a shoulder to cry on, a cheerleader when Mohammad has an infection, an advocate among doctors, a housekeeper, nurse, and most importantly, a wife.
Now that Mohammad is 42, there is a greater need for him to stay compliant. Every morning I wake him up early and help him with his treatments and airway clearance. However exhausting the daily treatments are, I am thankful for the hours it gives us together. Mohammad has an extra spark for life — making every minute I spend with him a reward in itself. My goal each day is to do whatever I can to make my husband feel comfortable and continue breathing — with the hope that he will receive a lung transplant and more freedom in the future.
There is a great love and respect that we share for each other, and most importantly, there is hope. Hope that Mohammad will receive a double lung transplant; hope that we will get through the next day or the next week. But most importantly, I am grateful that my husband is still alive and never losing hope.
Favorite Holiday: Halloween
Favorite Movie: Ever After
Favorite Color: Teal
One Word that Describes You: Chipper
Role Model: My mother
Nickname: Mon Mon — short for Monia, which is Arabic for heart’s wish
You can find Jennifer on ... Facebook
April 2009
“The past is history, the future is a mystery, but today is a gift—that’s why they call it the present.”
My whole life, I have always considered myself a caring person. The decision to become a social worker was an easy one for me. Originally from Long Island, N.Y., I attended the University of Albany for my undergraduate degree. I later graduated from Adelphi University, where I received a master’s in social work. Throughout my education, I had numerous internships that helped me realize that social work was the right fit for me.
I have been a social worker at Saint Vincent’s CF Center in New York City for more than 10 years. There are more than 170 cystic fibrosis patients where I work full-time for the center. This has allowed me to form many great relationships with my patients, to the point where I know what their favorite flavor of bubble gum is. I have the opportunity to work on various issues, including medical insurance, medication compliance, educating families on CF, transplant issues, and just being there for the patients.
Having CF definitely complicates aspects of a person’s life, and that takes a toll on patients in many different ways. I try my best to make my patients feel better, whether they are adolescents to whom I am teaching the importance of being compliant, or dealing with parents, who are feeling guilty or overwhelmed. It is my job to take the daily stress off of patients by becoming like a personal assistant.
Favorite Holiday: Easter
Favorite Food: Pickles
Favorite Pastime: Tennis
Nickname: Aimes
One Word that Describes You: Cheerful
Favorite Movie: Hunt for Red October
Role Model: My sister
Favorite Music: Elton John
The Boomer Esiason Foundation is committed to showing the world that people with CF are living longer, fuller lives.
If you are one of the many people who are Living, Breathing and Succeeding, join Club CF and become a role model for the entire CF community!
