“Go live your life.” Okay, we can do that.
“Go live your life.” Oh, you mean it.
"Go live your life.” We've got this.
Amidst the grief, anger and denial I felt when my son Major was diagnosed with cystic fibrosis, there were many questions. Could he go to the park? What about the grocery store? Can we show him off at work, or are there too many germs there?
The words that our pulmonologist kept repeating back to us were -- you guessed it -- “go live your life.”
You see, we were very lucky. Major was already admitted to the NICU of Blank Children's Hospital when he was diagnosed with CF. I know that none of this sounds lucky, but bear with me. Because we were admitted and we had to wait several days before Major could go home, the director of our CF clinic wanted to meet us and go over any questions. My husband and I assumed that we would talk for 15 minutes and that would be that.
What happened next changed everything. Dr. Alladdin Abosaida, M.D., clinic director at Blank Children's Hospital, walked into our hospital room with empathy and a smile. Dr. Abosaida quickly took me from a bawling new mommy to a determined new mommy in a matter of hours. That's right, I said hours.
This was no 15-minute conversation. Dr. Abosaida sat down with me one-on-one while my husband was at work. He explained what cystic fibrosis is and what Major's mutation meant for him and for our family's new lifestyle. He told us about enzymes, nebulizers, chest percussions, what the CF clinic is like … the list could go on forever. After about an hour, my husband joined us in the room and I thought for sure that the conversation would wrap up there and I'd be charged with relaying everything to him. Not even close. Dr. Abosaida went through everything with my husband so that he could have the same experience I'd had. We both got the opportunity to ask any questions that were on our minds. Dr. Abosaida did not leave the room until we both felt comfortable and ready to go fight CF with Major.
Many of our initial questions that day centered on what Major's life would look like. Could he get a job? Could he play sports? Would he be able to play outside? The answer to nearly every single lifestyle question was, “go live your life.”
It took a while for my husband and me to let it sink in that we, and Major, could handle this diagnosis. But nearly two hours later, we were ready to go live our lives.
Since that day, I have wanted to bottle up Dr. Abosaida's advice and become that voice of encouragement for new CF parents.
It is a scary and overwhelming diagnosis, and I bet that many parents have many questions like we did. However, the experience that we had is not one that can be simply duplicated with a doctor's busy schedule.
So, when the formation of a Parent Advisory Council was proposed at our CF clinic, I immediately jumped at the chance to become involved. This was how I could help new parents develop a positive attitude toward their child's cystic fibrosis diagnosis and start their journey on the right foot.
To date, we have created a great handout for new parents to receive at their first CF clinic visit. There is also some great literature provided by the Cystic Fibrosis Foundation that is distributed at this visit as well. The purpose of our handout is to provide a brief overview of CF before they work through more detailed materials. It breaks down some of the core infection control guidelines from the Foundation that a new parent needs to know immediately. We also included testimonials from parents whose children are thriving: staying healthy, playing sports and being with their friends.
Being on the Parent Advisory Council has allowed me to start helping other parents live their lives. I hope that if you are presented with the opportunity to serve on or help form a Parent Advisory Council, you will take it.