I wasn’t really sure how the public would respond to my Oklahoman article about Eli. When you put so much out there personally – there’s a good chance someone, somewhere, will find something wrong with it. Was I living in fear of online haters? No. I’m used to online haters. Still…would they find something to criticize? Would people lend support? Or would there just be crickets. The sound of silence. Silence. That would be the worst. It all worried me. I felt vulnerable.
Even one of my co-workers who is a regular reader here said he was worried. He was like “Oh, please, God, don’t let them hate.”
There has been no hate. Just a lot of support. Where were the online message board trolls? Had they all gone on vacation? Was Sears having a sweatpants sale?
Readers — most with CF or CF parents — sought me out on Facebook and sent me messages.
I got nice e-mails. Nice phone calls.
It felt almost eery to have all this support appear after putting our story out there. What is wrong with me? I feel creepy when people are nice? Why do I always expect the worst of an online audience….of people… of…. Oh yeah, I’m a reporter. A sad, sad group, reporters.
But in this case I was just a person, a mom, putting a lot of personal detail out to a new audience. Not so tough now, reporter.
I want to thank everyone who reached out to me. It means a lot. I asked a few of them if it was OK to share their kind words. Here’s a sampling of what readers had to say:
I already commented on your article, which was fabulous. But then after reading more about your concerns about quality of life (working, etc), I wanted to tell you that I know many people with CF, including myself, who are able to work, graduate college, and much more. I worked full time at The University of Kansas, then part-time while waiting for my transplant, and have been working full time again for the past five years after receiving my tx. Much of my success I will attribute to my parents’ willingness not only ensure that I was compliant with medications and treatments, but to encourage me to live without assuming limitations. Just by reading your article, I love that you are going to be this kind of parent to Eli.
Hugs to Eli and your family,
I so appreciated your article about your families life with Eli. I am certain you will be getting so much response to your article about Eli, but I simply could not not respond to you for several reasons: 1) I have CF with one Delta F508 mutation; 2) I am 70 years old!!!; 3) I live in OKC; 4) I have worked my whole life; 5) all of the practices one does in the mornings and evenings for treatment and air passage clearance have given me the appearance and the fact of a normal life in between.
Your interior reflections on life as Eli’s Mother brought me to tears as it reminded me of what my Mother must have gone through with her child 70 years ago, not knowing what was wrong, or why, or what to do. At one point, when I was 31/2 the doctors had declared me dead and was in the process of telling her and my Father that it was over, when the monitoring equipment at that time started to indicate a return of life. Fortunately, penicillin helped me live for a long time, then other antibiotics until the mycobacteria complexes hit and new strategies were required.
But the point, I am thankful for you and your family because it caused you to write this piece. Stay strong, before long they will harness the Delta F508 and Eli will live longer than the rest of us.
Hi Juliana – beautiful article you wrote about Eli! As an adult with CF,I figured I could give you a glimpse into my life – it might make you feel a little better (without sounding too cocky I hope! Haha).
I too was born with meconium ileus, which is how my family found out I, along with my older sister, have CF. She is close to 27, working full time and doing great. She has had more lung issues than digestion, while I, at 24, have a lung function in the ’90’s, am extremely active, and have never been hospitalized for a respiratory infection. I have however, had quite a few issues with my digestive system, especially as I have gotten older. While the past year and a half was tough, we’ve finally figured out a few things that cause the issues, and even more importantly, how I can deal with them without interrupting my daily activities. My biggest support system is my family, and without them, I know I wouldn’t be as healthy as I am. It sounds as though you’re very similar to my mom, so Eli already has a great head start.
There are so many healthy CF’ers out there, and the CF community really is amazing. If you have any questions, please feel free to message me back. Good luck with your boy!
Juliana, Just wanted to contact you after reading your story about your child and CF. I’m not one to try and raise false hope but can share a story because I’m a mother of a CF child but mine has beaten many odds by living way past the mean life for CF. He will be 50 his birthday. He has had his ups and downs but God had a plan and I quit trying to bury him a long time ago. There is hope!
He lives at Retrop Okla and pastors a church(no wonder) in Elk City. He is also an Elvis impersonator and does mostly Elvis Gospel(no wonder.lol.)
Attached find youtube song that is on his CD and dedicated to the Moore tornado victims and now I dedicate it to all CF patients! Your story touched me and felt compelled to let you know. Never give up and don’t let sweet Eli give up either.
I was moved to tears by your powerful article about precious little Eli. It must have been extremely difficult for you to write about your experiences with your own son, and you did a masterful job. Your love for him obviously has no bounds! I, too, have a son and a daughter (now grown) who have both faced serious health issues. But it is truly hard to imagine being told that your newborn baby needs lifesaving surgery, and then learn 13 days later that he has CF. I am an RN who specialized in pediatrics for over 20 years, so I know the challenges that Eli and your entire family will face. New treatments are being developed all the time, and hopefully one of those will be the breakthrough that will cure this horrible disease.
In the meantime, I know that Eli will thrive under the care of Dr. Tuggle, his nanny, a beautiful big sister, and two fabulous parents. Don’t forget to take care of yourself and ask for help when you need it. I would love to see follow-up articles in the paper about Eli’s progress. Thank you for sharing your story.