|
Shannon's Take - Dealing With the Diagnosis
Note:
The views expressed below are solely those of the author. They do
not represent the They do not represent the opinions of Conquer Pediatric
Chiari (C&S Patient Education Foundation) or its employees. Ms.
Schroeder is not a medical doctor and does not give medical advice. Anyone
with a medical problem is strongly encouraged to seek professional medical
care.
Your child has just gotten diagnosed with a Chiari Malformation and you
are completely overwhelmed. Not only because you were just told that your
child has a brain defect but also that it is something that they will live
with for their entire life. At this moment, most parents go through a
state of shock and disbelief. Chiari is typically not something that we
learn about before the diagnosis is given. I know myself it took me a good
week or two to finally put it into perspective. That was only after
staying up for a week until mid morning hours to read everything I
possibly could on Chiari and its effects on children. I believe this sense
of panic is normal; we as parents firmly believe that it is our job to
protect our children from harm. When our children get a diagnosis like
Chiari we so ultimately look into ourselves and wonder what we could have
done differently to prevent this.
In reality, there is nothing that parents can do to prevent Chiari. That
is why we need to digest all the information that we are given and slowly
sort through all that is fact and fiction so it begins to make sense to us
and we can begin to slowly describe it to our children effectively. I know
as a mother who has gone through this myself and continues to struggle
with the day to day events of having a child with Chiari, this is
generally the time when we feel the most alone. My point today is to let
you know that you are not alone! There are thousands of children
throughout the country who suffer from Chiaris. Here are just a few ideas
for you to begin your search for information about your child’s condition:
1. Enter in “Chiari Support Groups” into a search engine online and you
will get numerous listings to look through.
2. Talk to you neurologist. Often times they may have local listings or
groups that you can contact because they deal with this diagnosis
regularly.
3. If you have a particular faith, talk to a member of the ministry. Many
times they have prayer lists that you can add your child to.
4. Many of the non-profit Chiari awareness organizations have support
groups or support boards that you can post too.
5. Reach out to your friends and families. While they may not understand
the diagnosis that your child has just received, they know and love you
and your child. Likely they will be the ones to be with you as you go
through the medical appointments and surgery, if necessary.
Once you have built yourself a good support system it is then time to
become educated on the subject. There is a lot of information to know and
a lot of places to go for the information. Because Chiari symptoms often
resemble common symptoms of other diseases it often goes misdiagnosed for
years. Once you have begun to read all the information you will see that
Chiari can affect multiple areas throughout the body. Chances are the
abundance of information available will begin to make you feel overloaded
in the beginning.
I know for myself I often found a Chiari website on my computer at all
times, scurrying to make notes on every little thing I came across. Then
when one site contradicted another I got upset and frustrated. To top off
all of the medical sites I eagerly wanted to see if there were other
parents out there going through the same thing and how their kids were
doing. When I did this I came across one really important realization,
People don’t write much if things go well so much of what you will read is
about when things go wrong. I’d like to reassure that there are numerous
cases of kids fighting their Chiari and winning. There are good news
stories coming out every day.
As you begin to deal with this diagnosis you are going to have many people
concerned about your child asking what the diagnosis is. One key note to
remember is that you may not get the response you expect out of them once
you tell them that your child has a Chiari. Many people do not know how to
respond when they hear someone has a serious illness. And just remember
that it is Impossible for anyone else to know exactly what you are going
through.
In the beginning when we got the diagnosis of my daughters Chiari my
husband and I thought we should try and keep this diagnosis quiet until we
knew more about her condition. However it did not take long for our six
year old son to realize that something was wrong. He would either catch me
crying or want to use the computer when I was doing research. Finally we
realized that we needed to be honest with him and tell him what was
happening. It was a huge struggle for me because I was so afraid that I
was going to scare him. However I explained to him in the most kid
friendly way that his sister was having bad headaches and that we needed
to take her to see a couple doctors so that they could try and make her
better. As parents we know our children better than anyone else does. Kids
understand more than what we give them credit for. Take some time and
discuss how you want to incorporate other siblings in this family matter.
There is help out there for parents struggling with their childrens'
diagnoses. The key is to remember that you are not alone. This diagnosis
is scary and there is a lot to know, but take your time and educate
yourself. Talk to different parents who have gone through or are going
through exactly what you are right now. If you can’t find anything in your
area or online, write us here and we will try to help.
Stay tuned next month when we discuss “Finding a doctor for your child”.
Please feel free to email me with any questions, suggestions or comments
at chiarichildren@yahoo.com
-- Shannon
Shannon Schroeder is a mother of two special needs children. Her
youngest child was diagnosed with a Chiari Malformation in May of 2008.
As such, she has experienced first hand the effects that Chiari can have
not only a child, but the entire family. Shannon hopes to work with
parents and children to help make this diagnosis a bit easier to
understand, and to aid them in finding the help and support that they
need. Shannon can be reached at:
chiarichildren@yahoo.com
|
