In this interview, you will read what it was like for Lesa to find out her 3 ½ year old was diagnosed with CF. There is a common theme that I find when talking with newly diagnosed parents that have a CFer. That theme is my world is flipped upside down once they hear the words cystic fibrosis. Many people have never even heard the words cystic fibrosis or may not know what the disease really is. But when a parent finds out that their child was born with a disease they want to learn and read everything that they possibly can about it.
So where do we go? We go to dr. google and research things to no end. In fact it may feel like life is just shutdown. But once we get educated from drs., the internet (with good stories) our fears become more tamed. I think many people have found a real comfort zone in these interviews and this blog that I try to write. So without further blabbing by me here is Lesa’s story about her daughter Shelby!
CFer: Shelby (daughter) diagnosed 3 ½ years old and is now 11 years old.
Please share your child’s cystic fibrosis diagnosis (Include age, how you felt at the time of diagnosis, how was life before and after diagnosis)? Before your child was diagnosed with cystic fibrosis, have you ever heard of cystic fibrosis?
My daughter Shelby was 3 1/2 years old when she was diagnosed with CF! She is eleven now.
I had only heard of CF before but knew absolutely nothing about it! She was diagnosed by a sweat test then later confirmed with a blood test to type it. She has the Double Delta 508.
Words cannot describe how I felt as a mom at that time! I read all I could online and I really think my life just shut down for a while! We went back for her 1st clinic appointment where we sat and talked at length with our "team".
How did you cope with the diagnosis?
My worries went from whether she would ever be able to go to day care/preschool to everyday life to school, college. She is eleven now and being eight years later, Things are going good. Of course we have out op and down moments. I still worry about all these things. She has only had one hospital stay.
I did send her to 4K at a private school where she attended until fourth grade when I decided after many sleepless nights and prayers to put her in public school! She misses more school than is allowed with sick days which I had to work out with the school system and Sure she has had a few more colds and viruses going to the public school. I have a really hard time dealing with germs and the fear she will get sick which she gives me a hard time about. But, I guess that is just my job as a parent!
If we can go back to that day you found out your child had cystic fibrosis, what would you have liked to be told by a doctor? Where did you go to find more information about cystic fibrosis?
I am not sure what my doctors could have told me that would have made it easier! The facts about CF are just what they are and it is scary for a parent to hear! But, The first doctor who I complained about and eventually got changed to another one was not very optimistic about a cure! I mentioned to him I had read about the studies and what things they were working on, which, this was 8 years ago but he told me they had been working on a cure for twenty years and not to get my hopes up! So I guess a doctor who was a little more hopeful of a cure would have really been better! Yes, he no longer works in this children's hospital at all now!!
This has been one of the only blogs that has promising stories of real people! So thankful I found this and can even share our own story.
Wish I had read some of these stories a few years ago!
But there is hope now. So close to getting drugs that may make a real difference in the CF world!
What has been the biggest challenge for you dealing with cystic fibrosis?
The biggest challenge beside steering clear of germs like pseaudomonas which she now have again for the third time and the doctor says is a harder one to kill, is holding my child back from going places like summer camp for fear she will not get ANY of her medicines or breathing treatments while gone! All of her friends go and I just can not let her go and this bothers her! Also, I do not let her spend nights with friends often because I hate skipping pills or treatments and she is still at eleven very hush, hush about it with her friends! She doesn't mind taking enzymes with food in front of them but she doesn't want them to see any of the other stuff at her house such as her vest when they come over!
Another big challenge for her is keeping her weight up and where her doctor's want it. Ensure and lots if cooking with butter and cheese!
Please share with us any triumphs you or your child has accomplished because of cystic fibrosis?
I think she my daughter gets tired more easily than her friends her age but she is a strong girl! She pushes it sometimes when sick for sure. She is on two different dance teams, a competing dance team and ballet and goes to dance classes 5 hours a week, sometimes more when performances are scheduled such as The Nutcracker at Christmas or competitions out of town.
She hopes to get her ballet pointe shoes and compete in solo dance competitions next year!
We spend a lot of time at the beach in the summer and as I have read that surfers with CF tend to do really well because of all the salt water mist they inhale. So we make special efforts to spend as much time in ocean water as possible.
At age eleven she already has plans of becoming a marine biologist someday.
I think being very active like this helps her blend in with her friends and help keep her lungs clear!
She blew a 104 FEV1 on her PFT's last visit! So something we are doing must be right!
Can you describe what it is like being a parent to a CFer?
Being a parent to a child with CF is a special job! It comes with a few extra worries and jobs. It has not been an easy one, but being a parent is not easy with or without CF!
I am not one who will say "but I wouldn't change it if I could" because I would so love for a cure to be found and for my child to never have to do another breathing treatment or vest treatment ever. Although I can say that having CF has made her a lot stronger mentally than many other children her age in a lot of ways. Also I think that because of her CF she has a lot more faith and believes in prayer and relies on God more than other children her age! For these things I can say I am thankful!
How did you approach the subject of cystic fibrosis to him/her?
Other than what she picked up at clinic visit when she was younger I didn't talk a lot to her about Cystic Fibrosis! She knew she had it it was a disease and she needed to be careful about germs, also that her tummy hurt if she didn't take her enzymes! I never really knew how much I should tell her at what age and still don't! When she was in the second grade and she had her first and only hospital stay they talked to her more about ""what"" it is. Over the years since we have talked more and more filling in the blanks with her.
I talk with a lot of newly diagnosed parents to CFers. I want to know what you would tell a newly diagnosed parent to a CFer?
The best thing for a parent of a CFer to see and read are stories just like the ones I have read here of people who are going beyond what the doctors tell us and are getting married, having children, graduating from college, having careers, running for Miss New York or Hopefully Miss U.S.A., traveling.
Truly another wonderful interview in this CF community interview series. For many of us who are the CFer we do not know what it’s like being the parent to a CFer. I know all of us CFers know that the job of a parent isn’t easy and then throw a genetic disease on top of it!! Yes, that is cause for panic and sleepless nights of way more than anyone wants.
I really could see the difficult challenges that Lesa has to mentally battle between. Of course she wants to see her Shelby be a “normal” girl. It’s something I don’t think any parent would want to think about. How can I prevent my child from getting a CF bacteria? Well the answer to that question is we CANNOT prevent everything but we have to allow ourselves to sleep at night. So if that means not doing a certain activity or going to a certain place or bring purell and sanitizing wipes with us than so be it. All I know is that job of parent to a CFer is like no other.
This is something that I feel every parent to a CFer should focus on and that is Lesa’s advice to all newly diagnosed parents.
“The best thing for a parent of a CFer to see and read are stories just like the ones I have read here of people who are going beyond what the doctors tell us and are getting married, having children, graduating from college, having careers, running for Miss New York or Hopefully Miss U.S.A., traveling. “
That quote is what I want and HOPE for all of us involved in the CF community. We are in a new era of CF and I couldn’t be happier to be a part of this new era!
Thanks for doing this interview Lesa.
To read more inspiring stories from other CF community members click here.