Tuesday, April 6, 2021

Advocate or Asshole?

 


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.

#HopeForOlivia

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