“It is okay to have bad day – always remember that tomorrow is a chance to start fresh and be positive.”
I am the mother and caregiver of three young boys, Joshua, Matthew, and Phillip, who has cystic fibrosis. My husband and I were fortunate enough to find out that Phillip had the disease while I was still pregnant with him. We were able to research CF and begin treatments as soon as he was born. My other two sons, Joshua and Matthew, understand as much as they can at their ages. They accompany Phillip and me to his clinic visits, play with him while he does his treatments, and treat him as they treat each other. I homeschool my two eldest boys because Joshua has a sensory disorder that inhibits his ability to excel in a filled classroom. Phillip is currently attending church preschool, but I will most likely homeschool him as well.
My husband and I encourage all three of our boys to participate in sports and outdoor activities. I help coach my sons’ t-ball team, which Phillip will start as soon as he is old enough. The boys also love swimming – we are putting in a salt water pool – and karate.
As for me, I am a full-time hospital administrator on top of my caregiver responsibilities, which has forced me to stay extremely organized. My mother lives with us to help with Phillip’s care and I am fortunate enough to have a flexible schedule. I have always and will always make an effort to research any possible CF treatments for Phillip, no matter how new or different, and help him learn which ones work the best for his situation.
Being a caregiver is never easy. You have to stay strong even when difficulties start to take a toll on you and remain patient through the ever-changing treatments of the disease. You also have to want to be educated – you cannot consider it a burden, but a blessing to have as much information available as there is today.
I would tell anyone who has recently become a caregiver, or one who is struggling, to talk to CF patients of all ages, to learn from doctors and CF clinics, to always take things as they come, and no matter how hard it is, do not put your CF patient in a bubble. Encourage him or her to stay healthy and compliant, but allow for as normal a life as possible.
Musical Artist: Matchbox 20
Team: Dallas Cowboys
If I could go anywhere in the world, I would visit… Italy.
My family and friends would describe me as… determined.
My role models are… any older CF patients who are dedicating their lives to help the younger CF generation.