Just one of
those days.
My vision has
been off since my migraine yesterday that truly interfered with my vision more
than “normal”.
First migraine
since summer. I am not a fan of
those. Definitely not a stress one
because this school year has been one giant massive terrible ball of
stress.
Fighting for
understanding, acceptance and working with Bitty.
I had this
crazy idea that perhaps I could find a small part time job.
I miss my
paycheck and want to put some extra money away for when all hell breaks
loose.
Which is a
frequent occurrence.
However, my days have been spent with phone
calls, emails, appointment scheduling, volunteering, being Therapist Mom for Bitty,
and being Teacher Mom for Bitty.
After 12.5
days of school he was forced to perform half days due to him being “tired” so a
massive schedule change before he could even vaguely attempt to adjust to the
12.5 day brand new schedule change.
I was in contact
with his Therapists, his Developmental Pediatrician, meetings with his teachers
and others school staff. These were not
short meetings. During those meetings we
are repeating all that is stated in his IEP.
The IEP we
handed to him just to let them look over to see if it was anything they could
work with before we even got any hope of filling out an application for
him. Those needs listed are still the needs
he has. Yet it is an OLD IEP from when
the public school pushes children with preschool services into kindergarten
whether they are ready for kindergarten or not.
The school
wants him to have a new one. We are
working with that.
The staff
are not staying consistent and pull the fear card of concerns with him.
We have
countered with writing letters, organizing thoughts, pulling paper work, forms,
data support to confirm the information we share, we beg for them to use the
resources we have. The wonderful support
staff that have grown with Bitty, has offered information to share and teach
about Logan’s needs, they offer their time and to always be an open point of
contact to assist during difficult times.
Bitty has a new therapist who has come to observe him at school and
offer input. She has joined us on our
biggest meeting yet.
We have expressed we will give our time as
extra hands if need be. We make supports
and that they can run support ideas by us for we have given it 4 years of trial
and error. Surprising enough, as Parents
we are his in home teachers and therapists.
What we used can easily be paralleled into the classroom. This
information is not well received.
That in itself
is massively frustrating.
We are
jumping through hoops for them and will continue to do so if we must to help
our Bitty. We are only 4 years of
experiences so our agility may not be great but over time if this continues we
will be pretty well versed in it.
That said,
we do have two other kids who need love and attention who feel the stress that
this above listed drama seeps into them.
The home
tension is thick on many days. This does
not feel wonderful to the other kids.
They want
time and attention too. Even though they
are “used to” the focus on Bitty. They still don’t understand it as none of us
do.
They see his troubles and see attention received
as we work through those.
The other
two in turn reflect the images those images in grasp for time directed at them.
They need their
time and fun experiences. They need to
grow and learn with Mom and Dad too. They
too also have things that they struggle with and we must be sure to take the
time to help teach how they can work through those times.
This however
is just a typical Parent’s job.
As pointed
out all we do for Bitty in one of our meetings, a school support staff piped up
that it is what we do only for one and there are two others not even mentioned
towards that effort and time.
It is the
job we signed up for. Our choice to be
Parents.
These
battles, people call it advocacy. That
is just a pretty word to use for a battle.
At least that is what it feels like.
We are exhausted but can’t sleep.
We must plan and organize but thinking is very difficult.
I mean the
work to fight this battle is 40 hours at least, then we add we need to work
with that child and our other two with homework or just a game or heck read a
book.
Do we need
to pay our bills? Food in the pantry? We
have to cook, right?! Laundry, do we
need clean clothes? Does the house need
clean?! Are our pets fed and
watered?? Oh wait, time for
ourselves?! What is that!? Our time together is planning for the next
meeting. The follow up contact regarding
information given and or shared. Getting
all I’s dotted and t’s crossed.
Oh do we
have more appointments coming up, oh crap I overscheduled.
Oh yeah! We
must take care of ourselves too.
Tired but
can’t sleep, throw some time for yourself in there but your brain just won’t
stop running through the “to do’s”??
Oh wait, did
I email my Doctor back?
You know I
really need to. (And I did.)
My neuro-oncologist
thankfully uses email for contact.
I was
supposed to update her about my headaches.
How they are doing, perhaps they are stressed related? I need to relay appropriate information back
to her so they can determine what they feel are the cause.
My MRI’s are
stable but the headaches are making a comeback not just any headaches,
migraines with aura changes. That’s
all.
Remember though,
I am suffer terrible reactions to migraine medications.
The
oncologist feels strongly against usage of NSAIDs post brain surgery.
Why, you
ask?
If you take
them post brain surgery you have an increased risk of brain hemorrhaging and
she doesn’t think a gamble is worth the risk.
The
headaches and migraines feel just as they did prior to Arnie’s discovery and
post his resection.
So, we have
an option, I deal with it the headaches as I have since they ever started just
only use of Tylenol which does nothing other than take a slight edge off. The “fix” to just turn off and wait for it to
pass. I can feel off for days.
Don’t worry,
I don’t have anything else to do. (sarcasm)
The other
option that was mentioned in July was chemo.
Yup.
We did not
share that publically at the time is was presented.
Dr.
Desjardin described it as Arnie’s remnants are just a splinter in my
brain and like a splinter can cause pain and irritation. The extremely low dose of chemo can help
soothe the irritation. It will not
attack the remnants as Arnie’s remnants are not “active” they are in a “sleeping
stage.” As we were told in 2013 that his remnants will wake up one day and a
new battle will begin but you never know MAYBE Arnie won’t ever wake up but
that is pretty slim.
She made
sure she mentioned how odd his tests ran that she had not seen on with numbers
like his before so maybe he will stay sleepy! She said all of that with the
added but if we use chemo and he wakes up, the chemo has a first line advantage
to kick his ass the moment he starts to even blink.
We recently agreed
we are on a, “I just suck it up” agreement for pain.
They are
concerned with quality of life but I can handle pain it has yet to fully take
away my quality just make some harder days.
So, all of
that weighing on us since July and the fear of Kindergarten for Bitty to the
real life advocacy and acceptance road we have begun.
As you see
just those two topics takes up a lot of space and thought and just barely
glances our other two Kids.
These two
topics will always be in our lives and this is how things usually will be.
We do spend
time with our other two, just not as much as we like to. That said Bitty needs
time to just like them! Not just therapy and work time for him.
They all 3
need time to be “typical” kids and have ‘typical” Family time.
Oh yeah and
one of us has to be at work so we can have our home, electricity, water, food
etc. On top first page of to do’s and needs.
Oh yeah,
Friends?! We want to see them to.
Extended
Family!?
Crap.
The list
will always continue to grow and some things get dusty when they slip through
the cracks.
We must
battle insurances too. It is fun and you
know what?!
This is
absolutely miniscule compared to what other Families need to do or have thrown
at them.
Tiny, just the
start of a can of worms.
Things truly
could be even harder and if they ever turn that way we will continues to fight
and move.
Quitting is
not an option, neither is pity.
No pats on
the backs. We are just working with what needs to be done for our Family.
Just knowing
so many more have to work through darker woods keeps our lives in perspective.
The only
purpose of this post is to spread knowledge and experience in hopes of reducing
judgement and misunderstanding in Society.
Just hoping
to spread some insight and words with those who choose to have open eyes, ears
and hearts.
Perhaps, in
time there will be more people like them in the world.
