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.
August 2011
“I have made it a point to raise my children to grow and be self-sufficient.”
I am a single mother of three children, two of whom have cystic fibrosis. My son, Jack, was diagnosed at seven months, while I was pregnant with my youngest daughter, Kate, who was also eventually diagnosed with CF. While my situation can be difficult, I am fortunate to live in an extremely supportive community and to have three children who support each other through life.
Raising two children with CF has changed my perspective as a parent. I look forward to every day I have with my children and have come to realize that when a child has CF, the whole family lives with it as well.
I have made it a point to raise my children to grow and be self sufficient – encouraging both Jack and Kate to take more responsibility for their medications and treatments as they grow older. Jack supplements his medical treatments by playing baseball, skiing, snowboarding, and, his favorite, skate boarding. Kate stays active by participating in theatre. I am so proud of my children for staying active in spite of their disease.
I have learned to be more courageous by raising Jack and Kate and watching them stay strong. They have taught me to appreciate what my family has every single day. We love spending time together at home, but also take advantage of Jack and Kate’s good days by going on family skiing and snowboarding trips.
My oldest daughter, Samantha, has become a rock for the entire family. She supports her younger siblings and I am proud to see the young woman she has become. I look forward to seeing all of my children grow and I hope to one day attend every single one of their college graduations.
Favorite Holiday: Halloween
Favorite Food: Linguine and clam sauce
Favorite Pastime: Reading
Favorite Music: U2
Favorite Color: Green
Role Model: Frank Deford, sportswriter
Special Quote: “Every man dies but not every man lives.”
Dream Vacation: Atlantis, Bahamas (kids’ dream)
You can find Elizabeth on: cysticfibrosis.com, Facebook, blog and Twitter
May 2011
“Being a caregiver firsthand will forever be the most rewarding time in my life.”
I live my life for my kids, and I was a CF caregiver to my son Michael as a single parent for the 15 years of his life. Michael passed away at the tender age of 15, and this was the most difficult time for myself and Michael’s three siblings.
Michael began getting sick when he was just one month old, and he was diagnosed at four months old. Throughout Michael’s life, there were many difficult times dealing with the hardships associated with the disease, but all the kids supported him and were very proud of his strength and the fact that it was hard to tell he was sick because of his positive attitude.
Michael was an extraordinary young man, and I am so blessed to have had him in my life. Growing up with CF, Michael did not let anything hold him back. He was a straight A student; even though he had to be home-schooled the last couple years of his life, he never gave up. He graduated from middle school and received a scholarship for high school, and this was a very proud moment for the both of us! He was also very involved in the Make a Wish Foundation, as he participated in walks in Florida.
Michael began to get very sick around the age of seven, and at age nine, they told us he needed a lung transplant. This was very hard to handle at such a young age, but then, miraculously, he started improving and did not need the transplant yet. That was short-lived, however, and he then went from being sick to extremely sick. Michael knew he was reaching his last bit of time on Earth, and it was his wish to spend this time at home. Before Michael passed, he sat up and said he had to go, he knew he was ready. Although this was the hardest time on my family and me, he helped us accept his passing because he always had a smile on his face, and he let us know he was okay and he was ready to leave and go play.
After this devastating and emotional time in my life, I felt a little useless and was out of work for eight months. This was an awakening in my life, and I then became a Respiratory Therapist. I work with adults and many who have CF. My experiences with Michael now help me with my patients. He taught me more than I ever could have learned just by going to school to be a Respiratory Therapist. Being a caregiver firsthand will forever be the most rewarding time in my life.
Each day is a bit easier, and although Michael will not be back, I know he is with me and he is my guiding footsteps as he helps walk me through this life ...
October 2010
“We realized there’s a difference between living with the disease and living your life.”
In September 2010, I did a podcast with [BEF Volunteer] Jerry Cahill, and I talked about my son Tyler, who is 10 years old and has cystic fibrosis. In that interview, I said things that I’ve never said to Tyler, and that I’ve only said out loud to my wife and a few other people. (Click here to go to the podcast.)
A few days after the podcast went online, Tyler and I listened to it. When the podcast was done, Tyler’s first question to me was: “Will my life be shortened by CF?” It crushed me. I had to tell him that it might, but that we do the best we can with nutrition, treatments and exercise.
So far, we’ve been very blessed. When Tyler was five years old, he was hospitalized with a bad asthma reaction. Our allergist decided to do a sweat test, practically out of the blue, because of one or two other symptoms Tyler had. He came back with a diagnosis of CF, and it was quite a shock. My wife, Susan, and I didn’t know anything about CF, and we don’t know anyone else on either side of the family who has it.
Tyler has not been hospitalized since his diagnosis five years ago, and we and our doctors have weaned him off all of the medications and enzymes. He doesn’t use a chest wall compression vest, and we don’t even have to hit his back at night. Basically, his symptoms are very mild. When he gets an infection, we’ve been able to knock it out with antibiotics. Our doctors at Children’s Medical Center in Dallas have been great. I feel sort of guilty when I see what other families and their children are going through.
So, Tyler has a life that is very normal for an active 10-year-old boy. His ambition is to be a Major League baseball player, and we give him access to as many activities as possible, because we know that exercise is so important to maintaining his health. He loves to play with his friends and his siblings (our son, Julian, is 12, and our daughter, Reagan, is 8).
For the first six months after the diagnosis, we were very protective of Tyler; it was like he was in a bubble. We told the staff at his school, and we brought in pamphlets about CF. We bought umpteen bottles of hand sanitizer, and we asked his teacher to keep away any kid who had a cold. We tried everything to keep him protected. But we realized that we were scaring him and that he was not having any symptoms, so we started to ease off. We realized there’s a difference between living with the disease and living your life.
We saw no reason that Tyler should be branded for having CF or that his dreams should be stunted when he’s doing so well. So we make sure he gets plenty of exercise, and we keep our house spotless, and we try to get him to eat well (but we all know how few vegetables any 10-year-old will tolerate!).
We don’t tell him more about CF than he needs to know at this point. He’s asked questions only a couple of times, like after listening to the CF podcast. Most of the time, he would rather play basketball or baseball with his friends. But, eventually, we will talk about it again. I hope that day is a long time from now.
Q&A WITH BOB ESPARZA
Favorite Family Activity: Playing in the pool
Best Home-Cooked Meal: Hamburgers on the grill
Favorite Vacation: Destin Florida Beach
Advice to Parents of Kids with CF: Our lives are pretty stressful as we cope with the realities; make sure you’re not just a parent but a best friend. Laugh, live and love.
Q&A WITH TYLER ESPARZA
Favorite Holiday: Christmas
Favorite Food: Lasagna
Favorite Pastime: Baseball
Favorite Movie: Avatar
Favorite Music: Pop
Favorite Color: Red
Nickname: Ty
One Word to Describe You: Reliable
Role Model: Derek Jeter
Dream Vacation: Going to New York City and watching the Yankees play baseball
Words of Wisdom: Do unto others as you would have them do unto you.
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!
