June 21, 2016 8:31pm (Sara)

Of course there are breakdowns to endure. This is to be expected. Yes, Maya’s steroid induced frustrations while being tired and feeling like crap, while working through leg pain, nasty meds to make sure her poop doesn’t make her bleed and cause an infection, while having uncontrollable tearful out bursts and breakdowns….yes those are heartbreaking. They are mostly hard because quite often there is nothing anyone in this world can do in that moment to make her feel better. We all just have to ride out the storm, snuggle (if she isn’t too fiery hot) and hope it’s the typical short term event. Her breakdowns are understandable.

But if breakdowns are expected…then why do MY breakdowns take me by surprise?!? It’s amazing to me that after all of the procedures, chemo infusions, nightmares, and observations of a 3/4 inch needle inserted into my child’s chest…that I no longer cry at each one of them. Nope. I cry at random things like forgetting to refill her decadron prescription. Even though we have options and my dad is willing to run down to SaveMart Pharmacy and everything will be just fine…I cry. Like kind of hard. No hiccups but I needed a minute in the bathroom by myself (if I was upstairs I would have been in the closet).

Of course the bathroom didn’t hide me from my sweet dragon child. She can be so empathetic too, “why are you crying mommy?” While she hands me a tissue. What am I supposed to say? I’m just emotional?! I’m just frustrated? I’m scared. I’m scared that I will screw this (what feels like forever) treatment up at some point. I wonder if she thinks I breakdown over the smallest things. She cries at scary things we all can see…I cry at the scary things I don’t even know about.

Tonight it took me a little longer to recover from the tears. After I got off the phone with the pharmacy I couldn’t quite stop crying. I cry because sometimes my brain hurts and I just wish things were a “weeee bit” easier. You see they make a 2mg tab of decadron and a 0.5mg tab…but oh wait she needs 6.5mg a day. So we do 3.5mg in the morning and 3 at night because it causes some restlessness. So here I go…Doo Dee Doo, making Maya’s evening cocktail….but wait, I’m out of the 2mg. Shit. I forgot to get the remaining amount today. Well I can just load her up on 0.5mg tonight and tomorrow then I’ll pick up more. Nope. Can’t do that cuz we need those 0.5mg tabs for the next pulse of decadron. Eff, I have to call Rita at the pharmacy. Well, between her problem solving (and listening skills), and my dad’s availability to run an errand…I no longer felt like such a shit show….more of just a┬áhot mess (but that’s more of my baseline these days anyways).

I’m not sure how a 34 year old mommy can be more of a mess than a 3 year old on chemo and steroids but…such is my life. My tears took some time to subside tonight because while this dragon child of mine might have her messy times, over all she is simply remarkable. She just does what she needs to do. What we need her to do. I cried tonight while I watched her take that damn decadron. I have watched her take her medications for over 4 months now…tonight some how feels harder and yet…she just does it. She just always does it. No questions (okay some questions) asked. I wish I felt as strong as she is.

I stated that I would carry her through this. As I read those words again I felt like a fraud. I will do what ever she needs me to do…to get her through this battle and the next…but I have no illusions that her strength is what carries me.

I breathe a spark compared to her mighty dragon fire. She inspires me. There is nothing weak about this dragon. There maybe weakness within me but I promise to work on getting stronger myself. As I wear it around my wrist in multiple colors, I must become Strong and Calm.
Love is Life.