Q&A From A Newly Diagnosed Parent

As some of you may know, I really love to reach out to new mom’s or dad’s who have a son or daughter who has been newly diagnosed with CF.   When a parent hears the words your son/daughter has cystic fibrosis I can guarantee they have a zillion thoughts, emotions, and questions running through their mind.  Most of these parents have never even heard the words cystic fibrosis.  

I have been trying to offer my guidance/life experiences to these parents.  I always introduce myself with a little background about me and how I have had many dreams come true. At the end of my introduction I always offer the parents the opportunity to ask me any questions about this disease.  What is great about offering them the opportunity to ask questions is they actually do have questions for me.  I love to answer their questions to help shed some light on this disease.  As long as they ask I will keep giving answers!

Here is the latest round of questions from a mom to a baby CFer.  These questions I can see many parents asking themselves! I am glad she decided to ask me for my opinion.  I hope that the answers help.

   

I’m obviously very protective over NAME……is there any advice you can give me in being a mom to a CFer?

Well being a protective mom is not something that would change even if your son/daughter didn’t have CF. Being a protective mom is just a mommy instinct.  Trust me I see it at home with my wife being protective of Alayna.  As for giving you a piece of advice the biggest thing I would stress to any new parent is to treat them like any other child.  You cannot raise your child in a bubble and worry about every single CF bacteria out there. You have to let them experience the world every day just like every other child.  If you start to shelter them they will feel that is how they should live their life in fear of the “outside” world.  I know it has to be scary to a parent about all the “possibilities” out there but you also have to look at the positive possibilities when exposing your child to all the great things in life. 

One thing that I would like to stress is to make your child’s health a priority right away.  It is going to seem like a major challenge to “change” your life around airway treatments, neb treatments, doctor appointments, and all the various other things CF throws at you.  All those things will become a part of your life once you get into a routine almost like getting into a car and fastening your seat belt. It just becomes old habit. 

Lastly, a child will view his/her parents as a mirror.  The way you portray CF and the outlook you have on this disease is how he/she will view their disease. I know not every day is going to be a beautiful picture. But if you try to paint a picture that is positive so will your child.  If you are looking for more advice on this topic read a prior blog I did for a newly diagnosed CF parent here.

http://livingmydreamswithcf.blogspot.com/2013/03/parents-accepting-cf-my-response.html

Was your mom to protective? What did she do that you appreciated?

For those who have not read my CF diagnosis I was not diagnosed until I was 12.  So my mom didn’t really smother me as a child growing up.  Yes, of course she was looking out for my best interests when it came to my health.  In fact both my parents made it my responsibility to take care of my airway treatments. I really appreciated my parents making me accountable for my health  They would remind me occasionally to do my treatments and I was really good about getting both airway treatments in everyday.  

It wasn’t until a few years after my diagnosis the vest was made available for airway treatments.  My vest was located in my room and again it was my responsibility to use it.  I can honestly say by giving me the responsibility and holding me accountable and not nagging me every time to do my airway treatment really worked for me.  I felt like I was in charge of my health and I took a sense of pride in it at an early age. 

I think it's very important to have your child at an early age take on responsibility when it comes to this disease.  The earlier and sooner you get them involved in CF care it just becomes easier and a way of life.  They begin to “accept” that they have to do this medicine, this treatment, or attend this doctor appointment because it is a part of their life.

So how do you get your child involved? You can have them setup their nebulizers, get the vest all hooked up, or even have them make up a treatment schedule calendar. The more accountability and responsibility you give them, will make them feel more in control of their disease. 

One thing I forgot to mention that I appreciate about my parents and not just my parents but my wife as well is that I have my own entourage when it comes to me attending my doctor’s appointments.  I still love the fact that someone I love is willing to attend my doctor’s appointments with me even at my age of 28.  This may not work for all CFers but I still really appreciate them showing an interest in my health.  I hope they continue to attend my appointments for years to come!

What did she do that annoyed you?

I am trying to think of something that my mom or dad did to annoy me when it came to CF………..Well I guess it is a good thing that I really cannot think of a big event that annoyed me.  I guess more so nothing that annoyed me but they always felt like I should guard against telling people about my disease.  For the most part if you were not a part of our family or not a very close friend to our family you really wouldn’t know I had CF to begin with.  Now, as you can tell through my blogging I am a lot more open about spreading awareness about CF.  I never introduce myself as John, I have CF.  I tend to reserve that conversation down the road until I know what kind of role you will play in my life. I am a lot more open about CF because I feel the more people who know about this disease the better we are as a community and the closer we will be to cure!

Also, did you get teased at school? I think I would go crazy if someone was mean to NAME!

As I said in a prior answer I wasn’t diagnosed with CF until later on in  my life.  I really cannot ever recall a time where I was teased about having CF.  The only people who knew I had CF were my family and close friends.  Nothing was ever said negatively about this disease around me, that I know of.  When it comes to being teased I can see this happening on different levels.  Many of us have clubbed fingers or odd shaped fingernails.  I have heard where some cysters of mine have been made fun of because of the way their nails look or they have the CF bloated stomach look.  I guess as a male I didn’t have to worry about that.  Or how about for males getting semi undressed in the locker room………..I guess there could definitely be a body image issue there as most of us are very skinny.  I can attest to one story that my wife was making good humor of my skinny legs way back in high school.  She said I had chicken legs! Haha!! Thank you enzymes no more chicken legs for me : )  Once you get past the high school drama  all that potential teasing fades very quickly.  Plus it doesn’t matter because every person is different CF or not!

What age do you think it’s ok to send them to school?  We were thinking when NAME is 4? 

I feel there are more positives than negatives when it comes to having your child around other children. I have read that there are some people who are afraid to have their CF child playing on playgrounds, going to daycare, or even attending school because of the risk or possibility of contracting a bacteria like pseudomonas.  Just remember a lot of the bacteria a CFer can get is found in your home!!  Bacteria lives on surfaces, in water, in soil, even in the air.  So the more you are able to accept that you cannot protect your child from all bacteria in this world the better. Just make sure that you and your child practice excellent hygiene techniques.   

I can relate to this experience as I was not diagnosed until well past birth.  My mom and dad let me play in the dirt, they sent me to school, I swam in public pools, and I played sports.  Never once did my parents think about pseudomonas before I was diagnosed with CF.  In fact, once I was diagnosed I still did all the same things and never once did I hear my parents tell me to stop doing something because of the possibility to contract a bacteria.  I just continued to practice good hygiene techniques.

I suggest sending your child to school when you feel it is right for them.  You will know when that time comes.  The more you treat your child like a “normal” child the better off they will be when it comes to dealing with CF and life, in my opinion. 

 

When it comes to children you can read all kinds of books on how to raise a child but children are all different.  In the CF world, we are all different as well.  So what works for me or works for you may not work for your child.  Sometimes you have to jump with your two feet in the water to test it out. You will learn as you go and find things that work for you and your child.  What really matters is finding what works.   Always remember this........you are a parent to your child not a parent to a disease.  CF will never define who your child is.  Your child will define who he/she is!!! I wish you nothing but the best! If you have any more questions please feel free to ask away and that goes for whoever is reading this as well.  There is never a dumb question either.