Day Three: 31 for 21
Blog Challenge! October is Down syndrome Awareness Month!!
Believe it or not I am pretty easy going. I am often scared by this life we lead, but I
am pretty amicable about things along the way. I don’t get confrontational with people who
stare, I don’t give angry glares at stupid things that children say out of
ignorance about my son; the adults are a different animal all together, they
should know better…but make no mistake… I am a mama bear. Just because I work to keep the claws at bay,
you should never assume I don’t have them.
And though it seems a little bizarre when I put it in those terms and
refer to my husband, I am just as willing to fight for him too. He isn’t my cub, but without him I have no
cubs so,… yeah, I’m not afraid of protecting him either.
And don’t misunderstand me here, I don’t run around looking
for confrontation. But having Bradley has
put me in the position that I have to be his advocate. Right now, he is six years old and
non-verbal, he can’t stand up for himself.
His Dad and I have to do it for him.
We get a lot of practice, and we are getting better at it. As for being in a hospital, it doesn’t terrify
me like it used too. Only very special visits will rob my breath,
an overnight with an EEG… not too bad, and I can sit in the ER for an entire
evening and not chew the ends off of every fingernail, only half of them. I now understand what each machine is
monitoring and I know what the numbers mean and whether or not I should be concerned
by them. I have learned to
compartmentalize my concerns and fears, keeping them firmly in check while I
assess and evaluate the gravity of a situation.
So it turns out that I have been in training… I don’t get bullied by doctors anymore. I used to be kind of meek, I didn’t question
enough or press for understanding. When
Madison was three months she had what they called a “Grade Three Reflux” though
they could have easily called it a Grade Four and sent her in for the same
surgery her brother would later have. I
managed to get through the testing, the xrays, the constant screaming in pain. Turns out her meds were too high, her
previous GI had tried to anticipate her growth, a growth she didn’t have or
exceed. I was too green to ask the what
ifs. I assumed as a doctor he would know
best for her and all would be well. His
best intentions were a bit off base, and I don’t fault him, because all we can
do is the best we can…he tried. We would
get her straightened out, I would get used to this Apnea Monitor that would be
our constant companion until she turned seven months, outgrew her reflux and
didn’t need it anymore. And life would
go on. But I learned that I would and
could question things about the kids.
When Eric had his heart failure in 2004, I was still
hesitant, but I got the answers to my questions…and I would get stronger and
bolder after that. I would take his
pulse as he tried to return to running and not happy with how high his heart
rate was, I went to his next appointment with him. A change in med dose and we got the results
he could live with, literally. When his
asthma kicked up in the middle of the Ocean while he was on an Oil Platform in
Iraq, I went to see his Cardiac nurse, and when she popped me in front of his
Cardiologist I squelched the desire to escape, stood my ground and had my
say. Turns out these were all just the
warmups to prep me for the real battles ahead.
I have since stood up to a Pulmonologist (but really only
because the head doc of the PICU looked at me and asked me what I thought –
baby steps) and I have stopped more and more the constant attempts to get IV’s
in my son when I know there is another easier and more viable method of getting
his meds into him, to the extent that I was ready to gather him up and take him
to a different hospital in the middle of the night. I have
battled with Eric’s cardiologist, and I have stumped his doctor with questions
she never even though to ask that prompted a call to that same
Cardiologist. I’m not afraid to ask
anymore, I’m not afraid to fight anymore.
So here’s what scares me… critters that slither. I was working in our front yard and came
across a surprisingly large snake skin…I quite working in the front yard. I have a healthy respect for things that
slither and I choose not to invade their territory as much as possible… for
that day, they got to stay in their territory because apparently that sucker
had climbed this rather overgrown bush like tree. Snakes in trees? Yeah, nope, not me. That’s a whole other nightmare.
But to stay on track… things that scare me other than critters that slither? The Answers.
As much as we need them, I am often afraid of what the answers will be,
and afraid of the answers that aren’t available. Talk
about darned if you do and darned if you don’t…In the realm of medicine, I fear
for Bradley and his health; but honestly, I worry about his Daddy too. And I worry about Bradley at school, where is
the path he’s on going to go and is that the right path for Bradley. Is it the right path for all of us? I worry about the girls, are they doing all
right mentally, physically and especially emotionally. I may not know what to do with the answers I
get, but I still ask the questions. I’m
guessing the most important thing is that I am still willing to ask the questions.
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