I find myself sleepless in the children's hospital once again.
I'm tired and I'm raw and I'm all sorts weary. This post is more for me than for you, because I just need to write.
A year ago this month I wrote this post, sitting in an uncomfortable purple chair exactly like the one I'm sitting in now, with the exact view too. Big buildings, city lights, bright bridges, moving cars, spots of light reflecting off the river, a man-made sort of beauty.
It's funny how the world keeps going so fast when yours is stopped up in suspension, waiting for answers and diagnoses.
Maybe not funny, but it's the only thing my weary brain can muster.
It's interesting what happens to me when we are admitted to the hospital with a list of uncertainties, a compilation of possible-diagnoses, tests and treatments lined up for days. It's interesting how a switch is flipped in me and I am suddenly in Everything Is Going to Be Fine Even If It Isn't, Because We Can Walk Through Anything with Him mode. Somehow I turn off the part of my heart and brain that walks down the What If's road of the list of possibilities talked about. I usually somehow turn off fear-mode. I think it has something to do with Him never failing us ever and always being completely trustworthy to us in very intimate and personal ways.
We've sort of got a routine here:
The doctors sit us down, they ask us the same questions and we give the same answers, we walk through the history that we know and don't know, we talk through all of the things we discovered and the things left unknown. The mysterious pieces of medical history. They carefully tell us their speculations, maybe protective of our mama and daddy heart that could burst at any moment; and somehow while it's all happening I am trying to smile and look calm and appear safe to tell scary things.
I don't want the doctors to withhold things from me out of fear of a mama's crazy reaction, so I get into this mega-calm mode of peace and confidence. I'm told by the staff how "together" I am, how I'm handling all the things "surprisingly well." How am I not a sobbing hot mess? [Not tooting my horn because YUCK, and exhausting...this is just a weird thing I'm discovering about me]. I tell them it's because nothing is for sure until it is, so why wander down the paths that only bring fear when we don't even know if that's our path? And even if it became our path, I knew and know we will figure out a way to walk down it because thats what we do. But I'm not so sure all this is good... all this mega-calmness? I don't know. Maybe it is. But also, maybe it's because I have spent so much time as a patient myself, that the hospital doesn't scare me. Again, maybe it's because He has proven Himself to be entirely present, gentle, and trustworthy, even if circumstances go all wrong.
I don't want to overreact to a hypothesis, use up all of my emotional energy, only to have it come up empty and false. So I do my best to not believe something is real until it is. If that makes sense. It seems to help me stay sane in the midst of all of this actual chaos.
When we get into these days-on-end (that's how it feels...one day feels like three years) in the hospital, I am reminded how grateful I am to be my son's mama...in these scary times, in these uncomfortable times, in these traumatizing-treatment times of thrashing and scream-crying and being held down, I get to be his safe space and comfort as I lean into Him for my safe space and comfort. What an honor to be my son's mama. My husband is here during the day, too. He shares the honor..except he's our son's dad. Of course.
Something else happens when we are admitted to the hospital. I've spent my fair share of time and nights in hospitals, and this has always been a thing I do: I tend to really try to push people away. I don't know why, but there's a quiet voice inside saying it's because I have taught myself to dismiss myself as worthy to be cared for. I dismiss myself, believing I am unworthy of people's time and worry and resources. If that makes sense. I'm sure it's all rooted in pride or fear or insecurity or lies I have been believing for years. But it's there.
One measly example: when I was mere inches from death due to giant bi-lateral pulmonary embolisms in 2010, I was in the hospital for nearly a week recovering. I lived in a house full of girls who wanted to visit me and I had family asking to be my company. But I consistently said no, I told them I didn't need company, I was fine, everything was fine, don't let me burden you. And yet I almost died that night, October the 10th. I hurt my mama because I kept denying her visit out of an attempt to keep her from worrying...I can't imagine my sons denying my presence in such a time as this. It's a form of self-hatred and self-deprecation that I am trying to undo...but what took years to put into place won't be torn down over night. I am much more of a hot mess than I like to think.
As I've gone to counseling, I've learned to ask myself: would I encourage someone else to respond/react/feel this way? About whatever the thing is. And to this sort of thing? No. Of course not. So this time around, this hospital admittance, I did my best to swallow my insecurities and misbeliefs and not push every one away. Yet I still pushed back and still told everyone no one needed to worry because no one is dying..even though the doctor's said if we didn't come in our worst nightmare may have occurred.
But what is the use in worrying? It doesn't really do much good, does it?
It's almost like some made-up notion that if i worry enough, i can control the uncontrollable.
But I can't. That's not how it works.
I want to let our kids see us allowing people to care for us, which means I need to stop dismissing the actual realities being faced. If I'm all about giving loss and pain the space it demands, why am I so quick to dismiss any reason for people to care or worry about the precious lives of our kids? So I attempted to be vulnerable and share with friends that I am a little bit nervous this time around, instead of only dismissing and waving off fears. I don't know if I'm making sense.
We had people sending us texts and messages of encouragement, friends bringing coffee and chipotle, listening ears and Starbucks gift cards. Community blows my mind and humbles me every single time.
My mom and her husband came up today. Loren and I took a bit of time and sat in the family lounge room which is all sorts of fancy and we did what we don't normally do, ever: we researched the main diagnosis we are looking at and waiting/praying to hear "no" about. It's interesting to remember my Grandma had suggested this very diagnosis nearly a year ago.
It is entirely exhausting to read that your precious son's possible diagnosis has an average fatality age of 37 years old. It is entirely draining to read about the life this possible diagnosis would demand. It's entirely discouraging to read symptom after symptom, to put the confusing puzzle pieces together after 14 months of mysteries...and wonder if this is what all of the randomness of his unknown diagnoses have been. ...If the confusing pieces of the puzzle fit perfectly into this horrible, life-taking diagnosis.
It's painful to stare into your exhausted baby's eyes, almond shaped and dazed, wondering what tomorrow will hold as he stares up at you with wrinkles around his eyes from the fatigue. Will we hear that we can expect our entire life to change? Will we hear that our son's life is estimated and likely to end in 36 years.. likely while we are still alive? Will we hear that our son may not get to raise his own babies and watch them graduate? Or will we hear that all of this draining speculation and wondering was unnecessary? That there are other less-intense things going on? That we shouldn't have even looked at the research?
I watch him laying on his stomach in the raised hospital crib, breathing heavy and abnormally okay with being alone, wondering what tomorrow will hold. What will my son's story be? What will the tests read?
It's comforting to sit and feel Him close, His presence letting me know that He created this little body and He loves this little soul so much more than I could ever comprehend. It's comforting to remember that all we need to think about is one day at a time... what will tomorrow hold? I don't know. But right now my sweet son lies asleep, finally resting. I don't know what tomorrow will hold, but if it holds devastating news of a dreadful diagnosis, I hope to remember to take life one day at a time, celebrating all of our moments together. Not because I'm better than anyone, but because that is how I find His steadiness and security. That is how I learn to find and trust Him in all of the uncertainties. One day at a time, one moment, grace by grace. Even the tear-filled, scared ones.
Pray with me that little man's day tomorrow will be filled with joy and less pain, hope and not fear.
UPDATE MARCH 26, 2017: thanking Him that the scariest and life threatening diagnosis came back negative.