Man those girls know whats up.
If only they could fix my monkey, too.
Speaking of holding on, here's the latest update.
Since our wild failure to thrive journey began, I've been looking for things to hold on to. Understanding, sanity, answers....
The shit of it is, I'm no closer to grabbing hold of any of those when it comes to Aspen and her continued feeding aversion.
Annoyingly, we’re routinely told she is a “medical mystery” at this point.
That they don't know why she fails to do what should be natural.
Can honestly anything be more maddening to a mom? A complete lack of answers when it comes to the health of their child?
Unfortunately, right now it really does seem to be just a waiting game.
A wait to see if genetics at Levine’s discovers anything.
A wait to see if she will ever be able to demonstrate the ability to eat what she needs on her own.
A wait to see if something else developmentally or medically shows up that will give us a better understanding of why we are here.
"Here" being… sigh, I don’t know. Stable? I guess I’ll call it that. She’s stable, with a feeding tube 100% required to sustain her life. Should I be okay with that? That being our definition of stable? Do I factor in just how unstable this actually makes me?
It’s become commonplace for her medical team and I to challenge one another. Trust I’m totally that mom that comes in annoying af and is like, “well, I was talking to this random mom, Susie, that I met in a g-tube facebook group that told me a story about her neighbor and she said…”
I embarrass myself all the time. Does it stop me? Nope.
Because right now, without any answers, and their advice to just stay the tube-course, I find myself actually wanting to ram my boat into that course’s wall over and over and over again.
Maybe this is in part because of how differently we define things.
How differently we see progress.
For instance, her medical team often has a very different definition of say, “tolerance”.
“She didn’t vomit afterward?” Okay, she good. Plug her in, load her up.
For me, I’m constantly trying to measure and quantify her level of comfort, her energy level, her desire to eat, her feelings of being full, her excitement to try food, her rate of rejection for her bottle…
Can I plot any of this on some objective data spreadsheet?
Sure, I can make up my own numbers all the time. Today her level of comfort was a 6! Yesterday, her desire to eat number hit a 4.
Doctor: “What did you base these numbers off of?”
Me: “Umm, my mommy gut information system? It’s very advanced.”
The doctors totally appreciate this. Err….
How do you measure any of this for our children?
How do we then relay these measurements to anyone else without sounding insane?
Leaving the doctor’s today I was told that perhaps this will be something she and I will have to navigate for the rest of her life.
No, no thank you. No, you can go fuck yourself is actually what I wanted to say.
Again, …. Sigh…
Trying to explain this road to anyone else makes me feel insane. More than I’ve already admittedly become. I suppose it explains my endless participation in random g-tube facebook groups to glean any understanding, any connection, any empathy from those who have walked this road and have made it to the other side.
But maybe that is my biggest failing right now.
Focusing on the other side, when we can’t even say what that other side looks like.
We just don’t know right now.
So here I’ll wait.
And try to stay sane.
And while I can’t hold on to anything confirmed, anything definitive that explains why this tiny monkey struggles so much to grow, I can hold on to her.
I can hold on to her with everything I’ve got.
And let me tell ya, that part feels pretty damn great.