The SpecialMoms Parenting Magazine Issue 5 | Page 21

you. If you do happen to find something interesting, please send me the article so I can read
it as well.” The truth is that with CU, the only
thing that is reliable and predictable about it, is
that it is very unreliable and very unpredictable.
It will affect people in different ways, from different triggers, temperature thresholds, and reactions. When you think you have it figured out
it will change or become more severe.
With the condition being so rare, it takes forever to get a diagnosis if you get one at all and
some doctors will tell you it is more of a nuisance allergy while giving you a prescription for
antihistamines and sending you on your way.
Of course what little medical studies there are
show that people with CU do go into anaphylaxis and shock at surprising rates. The antihistamines do not work fully either. The premise
of the antihistamines are to stop a few reactions
and hopefully make some less severe, but will
not and cannot keep CU under control. Will it
go away? Only God knows.

So what is it like for a child having CU?
They are locked away during winter. My
children cannot leave the house including to attend school in weather that is below 32 degrees
including wind chill. That makes for a lot of
missed days of school and huge gaps in education.
They must fight for an education. Point
blank, schools don’t want them. While it is illegal for any public school to kick a child out due
to a medical condition, schools will do things to
let families know they are not wanted. This includes not following a 504 or IEP plan, kicking
them off sports teams even with objections from
family and doctors, telling families that they
must give 2 months notice of an absence due to
weather or it’s counted as unexcused and they
can end up in court, and segregating the kids
from peers during school days. Yes they send

21

them to the office while their classmates are out
doing other things. While we have not experienced all of these situations, some are stories
that I have heard from other parents I talk to,
we have experienced enough of them, including
the nurse at our children’s school telling us that
we were horrible parents for having our children in school at all. When you try to fight this,
lawyers, advocates, and elected officials tell you
they have no idea how to help.
Threats. Did I mention that families are
also threatened physically and at times people
threaten to turn the families in to child protection because they haven’t moved? Of course
these people don’t stop to realize that moving
is not an option. Different areas come with different challenges and changes in the condition.
We have been told by our specialist that moving
to Arizona, the place that people tell us to go, is
the worst place. Why? Because the air conditioning in stores and schools would mean that
Taylor could never step foot in a grocery store,
school, mall or restaurant. Also, sweat cooling
against the skin causes a CU reaction. With two
children with the condition that have very different triggers to move to one place would put
the other in more danger. The answer proposed
to us from the medical field is for my husband
and I to each take one child each and move to an
area that is better for them, of course they have
told us to travel the world and find where that
is. I never thought that “The Parent Trap” was
an actual treatment plan for a condition, and
they won’t let me use their bank accounts, but
it doesn’t matter. We deal with this as a family.

You’ve met the condition. Now let
me introduce you to my heroes.
Taylor is our darling daughter who will turn
11 in a couple of days. Her eyes sparkle when
she laughs, she has an amazing sense of humor, is so intelligent that she can confuse me at
times, and wants to be a Marine Biologist when

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