Hi Sarah,
Here is my two cents that I tell all newly diagnosed parents with a CFer…
I assume you feel overwhelmed as CF is very new to a lot of parents when
their child gets diagnosed. I think the feelings that you are dealing with are
very normal when it comes to newly diagnosed CF parents. I assume you have never
heard the two letters “CF”? Most parents of newly diagnosed children have never
ever heard those two letters. This can be scary but the world of CF that we live
in doesn’t have to be that way at all.
Let me ask you did you Google CF like any other person would? I assume you
found a bunch of negative information about how awful this disease is and how
devastating it can be. The key here is yes it can be this and it can be that but
it really doesn’t have to be all that bad and negative.
I also want you to understand that putting your daughter's health first is
the main priority right now. You are setting the FOUNDATION for your daughter at
an early age with this disease. Try to be as compliant as possible when it comes
to airway clearance, taking all the medicines, and attending doctor
appointments. This will pay dividends for her health in the years to come. She
will thank you not right away but when she is older and can understand how much
of a POSITIVE influence you have been in her life.
But you have to also remember she is a “normal” baby/child. Se will go to
school, she will have a bunch of friends, she will be just as active as any
other child who doesn’t have a disease. Your daughter will view CF as you view
CF. If you paint CF as a dark and scary picture she will as well. You have to
try and show her that CF is a part of her life and your life but paint a picture
that things will be ok and she will follow this lead as well. Whatever happens
you will face it as a family and you can tackle it. Just remember enjoy every
moment with your young daughter because they are so precious!!
There are so many POSITVE stories out there momma about people who are living
out their dreams with this disease. Those are the people you need to find in
this community. The more POSITIVE people you surround yourself and your daughter
with the better you will feel about this disease. You will find that the people
who truly care about you and your daughter will show the greatest support for
you.
I know many fibros and cysters who are living normal “healthy”lives with this
disease. I for one feel I am in that boat. I have had many dreams come true. I
have a loving wife, I have a little baby girl, I have graduated college, I have
a career, the list goes on and on. Oh and I am 28 years old kicking butt with
this disease everyday.
So what I want you to do is see this disease as something that will shape
your daughter into a STRONGER person as well as you as mother. She will go on to
achieve many things in life just like every one else. She has the potential to
be GREAT just like every one else does every time they get out of bed in the
morning! CF will never define who we are. WE define who we are!!
If you ever have any questions on this disease please message me through the
site.
Here is my blog about me kicking CF butt everyday. Feel free to read
Please feel free to ask me any questions. I love to answer tham.
http://livingmydreamswithcf.blogspot.com/
John
28 year old fibro!
