In and out of consciousness, contracting little body
muscles, wandering back brown eyes, cold limbs begging for warm blood flow,
over and over and over x30. Each time wearing on your precious brain until
you’re completely knocked out. I feel like a failure the more I watch because I
can’t provide you with the relief your body hungers for. I’m scared and so sad
but it’s time for me to put on my big girl pants and head into appointments to
advocate for you. Or at least that’s what I thought I was doing. Fear didn’t
come out of my mouth; tears weren’t running down my face. No, in fact I found
my voice getting louder and demanding while my tone was getting sterner. Then I
would recap visits when I lay my head down at night, when my brain won’t let me
sleep, and I realize how rude I was becoming.
My mom explains “little Tina” as stubborn, constantly giving
push back, questioning everything, and her strong willed child. But why was I
always in fight mode? I have no idea and I’m sure I’ll go over that in therapy.
What I do see now though is that Olivia needed a momma like that. I was
advocating for her in the only way I knew how. I used what skills I learned as
a child that got me by.
There came a point though where I turned to my husband Daniel
after an exhausting visit and told him, “I don’t want to be a bitch.” I don’t
like being a mean person but at that time it felt like the only thing that was
keeping me heard. I’m a big advocate for respectful, honest, direct, and
effective communication. But yet here I was acting like I had no right
upbringing with the thought that disrespect would get my daughter what she
needed. I was no longer advocating, I was becoming an asshole. I was tired of
going into every visit like it’s a boxing match and leaving exhausted. I needed
to really define advocacy and what I wanted that to look like for our daughter.
We had 2 unplanned hospital admissions 2 weeks apart from
each other again. The most recent one was where I learned all about advocacy,
but this time from my husband Daniel. Olivia’s seizures had evolved at this
point and the Lennox-Gastaut syndrome (most severe form of epilepsy) was now being
discussed. Late morning had hit when the neurologists made their way into our tiny little split room. He began to explain that the overnight EEG Olivia was hooked up to did not show any signs of seizures. Before he could even finish I immediately interrupted him. I then began explaining that I clearly saw the spikes on the EEG myself correlating with her seizures. I was mad and it was evident. I might not have rolled my eyes or name called but my tone & stance & everything else about me was screaming, “YOU’RE WRONG!” Daniel watched and listened just as the neurologist did and neither one of them interrupted me. After my rant, the neurologist agreed to go back with an epileptologist this time to look over the EEG results again. Unfortunately, we did not see that neurologist the remainder of our stay.
Once again the nurse was ready to administer a new medication
without us first being informed by the neurologist what the final results were. We had to learn from her that Olivia was diagnosed with myoclonic seizures (a new type for Olivia). When I researched the
medication online and received handouts from the hospital the very first side effect
was “rash that may lead to death,” and not too far down from that was
“metabolic acidosis.” I know you’re probably thinking I’m a dramatic side
effect gal reading way too much into it. But let me tell you, when your child
has fallen into that very small percentage multiple times, risk numbers no
longer mean anything to you. Everything must be taken into account. Needless to
say we were not willing to trial this medication. At this point Daniel had
enough and told me, “we are going home and will wait to speak with her
neurologist about starting the ketogenic diet.” I was like hold up, we’re doing
what?! He explained that we need to regroup without the pressure of medication pushed
on us. I know I didn’t want to start the medication either but that seemed a
little extreme, I mean our daughter is currently having seizures and they’re
not completely wrong. I found myself wavering from what Daniel and I had
originally discussed for treatment options.
I finally gave in and
told him to take over and speak with the specialists then about our decision.
As I watched him speak with them through all their attempts at convincing us to
stay in the hospital, I was able to gain insight to what true advocacy was. He
was respectful to their professionalism as specialists but also stern in the
fact that Olivia is our daughter and we will choose what’s best for her. There were no interruptions, no voices were being raised, and no one being an asshole. When
we finally left the hospital a feeling of excitement washed over me. I discovered
how monumental this was for me. It was the crossroads of speaking about advocacy
and where actual advocating finally met. If I didn’t have Daniel there with me,
we probably would’ve been in the hospital another week. He pushed me to act out
what I speak and to not be afraid for doing it either.
To even think about going against a doctor’s better judgement
was a big no no growing up. Providers sacrifice so much to complete their
schooling and go into a field of selflessness helping others. For that alone I have
an enormous amount of respect for them but I had to learn to not fear them. I
will forever be grateful in the work they do for Olivia but I now understand
that I am her mom who is responsible for the decisions made. It’s okay to not
agree and find another path to treatment. There’s no need to yell or act as enemies, because in the end we are all wanting to see Olivia succeed. While Olivia fights for life, we will
fight to advocate for quality of life.
