Especially
in these hot summer months and summer vacation time from school, many people
have asked me how it is going for Beauty’s brace wearing 20 hrs daily. I really
appreciate these types of questions ….because I find it so nice that people
care and think about her. Also as we all know, unless we are in a situation it
is hard to understand the reality someone else lives and so sometimes great to
share this info.
I
have had so many nice question and inquiries so I will give it a try. From the
child perspective and parent’s perspective
For the brace wearer (I
can imagine):
-It
gets very hot. She has to wear a full bodysuit under the actual brace to
protect her skin.
-The
rigid brace at night on hot nights can get very very hot
-She
always has to think about her day and the activities and where she will take
her 4 hr breaks (in all other seasons she is almost 100 percent compliant and in summer
about 80percent as breaks are longer and some activities she does not wear
brace with our permission but rare)
-She
is very limited by the brace for fashion. Strapless dresses, open tank tops, short
shorts. All the things she would wear-are a choice now. Often she chooses to
wear them anyways and have the brace show partially. Sometimes she plans her
break for these times to wear these outfits; sometimes she forgoes her usual
fashion style altogether.
-She
can’t go to a sleepover impromptu as needs to switch braces. The night brace is
too big for a knapsack so we drive it over to the friend’s house and pick it up
the next day
-It
is very uncomfortable to wear body braces so she has bruises and welts on much of
her back and waist that never go away
-When
you have your period and a brace-I can’t even begin to explain how logistically
difficult this is to manage
-When
you change for 4 dance classes a day and you have to wear your brace bodysuit, ballet body suit and tights
(all with no buttons to pee) let’s just say you don’t go to the bathroom a lot
and hold it in a lot.
-It
is extremely physically demanding to wear a brace and so she has not just a 6
pack but and 8 pack. I would honestly say at this point she is totally 100%
ripped. This is a positive right???? She honestly has the most beautiful body I
have ever seen on a preteen-at least she deserves this.
-Braces
do not necessarily do well in airport metal detectors
-When
you jump in and out of lakes and pools, unless it is your break time you have
to cover yourself up on boat and get back in brace often
-It
takes up a whole suitcase for two braces when travel
-Often
she decides to wear a sweater over a cute outfit to hide braceL
usually she is ok to show it but if new crowd or boys around she sometimes
hides and it breaks my heart to pieces when she does this
-It
takes away childhood freedom. She is forced to plan, and calculate and strategize
about her day
-Bottom
line is: it’s very tough. She is an amazing trooper who complains very little.
But I can see in her mood and demeanor and attitude. It is all taking a toll on
her.
From that parent’s
point of view
-Bodysuits
are washed every second to third day. The brace itself is washed especially
once a week. The rigid brace is also washed once a week. It is a long and complex
process
-You
have to leave work sometimes at lunch and deliver brace if needed or pick it up
-You
worry all the time about the upcoming x-ray which will likely determine if
spinal fusion or tethering surgery or hopefully (just!) continued bracing
_It’s
incredible that at this point you would actually be thankful if she only has to
wear the brace (vs surgery) for two more years. Let’s just say your standards
have gone done in what you hope for.
-you
spend your time on internet in evenings trying to get it all right and understand.
You write less blogs, have less time, cancel events etc, have less energy in
general.
-when
your child is out of brace you stare at her spine continuously
-you
can spot a kid or adult with scoliosis miles way (even if they themselves
don’t know they have it you do)
-you
thank God daily your daughter has more than enough body confidence and is slim
and fit as even with a rigid brace on underneath clothes she still looks skinny
-all
days are planned according to brace breaks so your already planning self gets
even worse
-Some
of your days are filled with doctors apt, xrays etc. And long hospital visits. You
take unpaid days or vacation for this. Husband and you go together to ALL appts
and X-Rays. We would not do it any other way
-you
constantly feel envious of other people’s kids who have clean bills of health
-you
constantly wonder why this has happened?
-you
sometimes feel bad or mad at comments people say or don’t say even though you
know it is not their fault and just a lack of experience in the area.
-you
pray that she does not grow more as then more chance of worse curve so instead
of being excited when she grows, you get really anxious
-you
can’t plan vacations or big events for sure as it is 6 months to 6 months you
now live by and you know that if surgery needed it will change everything
-you
miss seeing her just jump in and out of a lake and pool freely
-you
miss seeing her in her little shorts and midriffs shirts at the cottage
-you
live in constant fear that things will get much worse even though it is hard
already. And although you try not to think about it..it is nearly impossible
when it is your child’s health and future that is involved.
-You
feel blessed daily that it is “only scoliosis” and can’t even begin to imagine having your child have a life threatening
illness.