“Your child has Cystic Fibrosis”; and with those few words, our life changed and we’ve been on a journey ever since. I imagine that it’s also true for you; except we didn’t recognize the journey was a transition at first. Over the years as we’ve had the opportunity to share our experiences with others, we’ve realized that the medical staff has been grooming our family and easing us into the transition journey.
My name is Bruce Kerr and I’m the parent of a new college student, Emily; yes, we’ve transitioned to college. It’s different, it’s difficult and it’s hard. There are so many questions, so many what if scenarios, so much to consider. But, Emily is well positioned for success.
The transition doesn’t start at their college acceptance or graduation or even during the senior year. No, it started the day your loved one was diagnosed. You took on the new title of health advocate for your son or daughter. You wanted to know more and learn more. You want to be able to understand what the Drs and Staff were explaining with each treatment, medicine, surgeries and the options. You were also overwhelmed and your support system, your faith, family and friends, gathered closely to sustain and support you and your family. That’s transition.
The very experienced Staff of our CF Clinic at Nationwide Children’s Hospital also was transitioning with you. They drew upon their skills and experiences with this horrific disease to define a treatment road map for your child. And let’s be honest with ourselves, they also have the task of assessing the parents and families; how well we can follow the treatment schedule, do we take/give our medicines on time, do we fix the proper food requirements, how well do we adjust to those “extras” that pop up suddenly; those infections, the change in coughs and clearings, the picc lines and even the rebellious patient.
You should notice, over time, that in your clinic visits, your child is taking on a more active role with the medical staff. I remember hearing a student nurse be told that the key is “listening to understand and speaking to be understood”. Your child needs the time to learn to speak up and answer questions, to express what concerns them, what they like and don’t like about meds and treatments. This gives you a chance to grow with them, to be more confident that they will be able to transition to “on their own”.
In elementary school, we visited each class at the start of the school year and explained about CF and what Emily’s treatments were like. It helped take away any pressure or stigma when she left early to go take her meds and teachers tended to be more aware of enforcing consistent cleanliness habits. By middle school Emily would speak up on her own when she needed her meds. She also worked hard at taking care of herself. (She didn’t miss a day of school in over 5 years!)
By the time your child is starting high school, they should be well versed in a treatment routine that works with outside activities, such as band, sports, work, church activities and their social life. This high school “era” is most important as they transition to an adult life after high school. They will need to maintain treatments around classes or work schedules and keep their clinic visits and maintain their medicine shipments and daily dietary needs.
The Cystic Fibrosis Foundation (cff.org) has great guides to assist in the transition to high school and college, written by staff and patients. These guides cover topics such as shipping meds to schools, handling refrigerated meds, using the local health clinic, requesting single rooms, etc. They have check lists, forms and topics you haven’t thought of yet, Your local clinic also has much information, remember, every year they also send off their graduates! They have information for you, have the talk!
So in addition to these great guides, here are a few extras from a dad’s perspective: Be yourself, Be open with your CF; you are a wonderful person.
Put your health first, your parents worked tirelessly to fulfill your dreams, you’re in charge now. Get plenty of rest, sleep and exercise; treat it like a class that must be attended. Meet your nutritional needs, it may not taste like mom’s good cooking, but do your best. Understand your meal plans, store options, carry snacks with you and plan ahead.
Enjoy your college experience, use Skype or Face Time with your family, Let them See You! Put your treatment items/meds in containers in drawers or baskets on shelves. Keep some privacy till it’s time to share your illness with others. It doesn’t have to be the first weekend you move in. We’ve worked hard in getting Emily ready for her future, and yes we still have some things to work out over time. But all in all she is ready and adjusting well.
What did I have difficulty with? After we came home -
Oh, by the way, have a box of tissues ready!