It’s no surprise that children’s hospitals can be really depressing places to be. After taking guardianship of The Baby, he was (still) in the NICU for about a month. It was my first time spending any length of time at a children’s hospital and, despite the hospital’s best efforts, it could get very grim.
One afternoon, I was up at the NICU and The Baby had just fallen asleep so I stepped out to get away from the beeps and boops of the monitors and get some fresh air. In the NICU waiting room, a young girl sat in a wheelchair looking at the spectacular view of Downtown Dallas. She had IV’s and monitors with her; a cheerful headscarf covered her bald head. She looked content, probably happy to be outside of the confines of her hospital room.
Her mother sat a few feet behind her weeping silently. I stood like a statue because I had never been confronted with such raw grief before.
Children’s hospitals strip all control away from everyone- patients, parents, staff. Perhaps that’s why they can be so grim. If I get cancer, well, I can probably handle that. If a babe, an innocent kid, gets cancer, that’s harder to stomach.
I think about that woman often- every time we’re at the hospital in fact. Her and the dad I saw just a few weeks ago, collapsed in a chair by the valet station, sobbing with his head in his hands.
Last winter was rough for us, medically speaking. The Baby was hospitalized several times during the winter. Following his last hospitalization, he’s had a small, lingering symptom that just won’t go away. We’ve tried everything; his doctor has tried everything. Despite our very best, it has persisted. At our last visit with our PCP, she said, “I don’t want you to freak out, but I think it’s time to get him checked out by a doctor that deals with blood cancer disorders.” Of course, I immediately freaked. Cancer?! There’s no way he could have cancer. That’s just TOO MUCH.
If I’m being honest, we thought she was overreacting so we put it off. We scheduled and canceled a few times. At one point, we even thought the symptom had gone away but, alas, it reared it’s tiny little head again and so we resigned ourselves to the fact that we had to do this.
I drove The Baby down to the hospital and schlepped him up to the sixth floor. I honestly still felt like this was a little silly. We were going to this appointment, but it felt superfluous. I don’t want to say that I skipped through the hospital but my anxiety level was so low that I could have until the elevator doors opened and…
Shit got real, real fast. Something about being in the place where families are delivered the horrible news that their kids have cancer dulled my good mood considerably. The appointment itself was unremarkable, except that the blood work took so long that I had to leave before I had even met with the doctor because The Kid needed to be picked up from camp. Still feeling confident, I told the nurse at the front to have the doctor call me with the results.
She called about 20 minutes later.
“Hi. Yes, this is Dr. X. Listen, some of The Baby’s blood work came back abnormal. I need to see you tomorrow.”
I held it together long enough to get off the phone with her and then I just lost it. I lost it. I called Alex sobbing unintelligably. He came home early. We were in shock.
Could The Baby have cancer?
Our Friday visit was an explanation of the abnormal numbers and a game plan (Fun fact: Kids with Down Syndrome are at a much higher risk of getting leukemia than other kids). The only real way to know, to be 100% certain, was a bone marrow test. I always thought these were more invasive than they actually are. They were going to put him under and use a larger-than-normal needle to get some bone marrow out. It’s a day procedure. Of course, we don’t love the idea of any procedures but we agreed to do it because the “wait and see” method would be too stressful. They almost didn’t do the procedure when we went up there because he was so snotty but I cried and the very nice anesthesiologist and the doc had a pow-wow and decided to do it.
I’m not going to hold you in suspense. The doctor called last Thursday and said that 2 of the 3 tests she ran on his blood marrow came back completely normal. We’re still waiting on results for the 3rd test but it would be very bizarre for it to show anything other than normal.
He almost certainly doesn’t have cancer.
What follows are my thoughts on strength, polished in my brain while I lay wide awake at night anticipating how hard my life was about to get as the mother to a kid with cancer. While I won’t have to use these thoughts (for now), I’m getting them on metaphorical paper because I have friends that need them and I know that I will need them too eventually.
After we had our first terrifying “abnormalities” appointment, Alex and I sat on the couch in shock and said, “What would we do?” How does one prepare for their kid to have cancer?
In the course of our talking, I realized something. I told Alex, “What will we do if he has cancer? We’ll do the same thing that we did when he was in the NICU for five months. We’ll do the same thing we did when he had seizures, was hospitalized over Christmas, had to get on the horrible Bipap machine. We cry a little, stress eat some sugar and carbs, and we get on with it. We’ve already faced obstacles with this kid. We’ll do it again because we don’t have another choice.”
Where does strength come from? As a child/teen/young adult, I envisioned God up in heaven with an oil tanker truck full of strength (maybe even extra-strength strength). God, in his denim overalls and straw hat, stands near a hose at the back of the truck near a lever that says ON or OFF. The hose is connected to my heart. When God put the lever in the ON position, I could move mountains, slay giants, do anything. The “ON” position was great. Unfortunately, it didn’t seem to be in that position very often. If I showed any weakness- fear, doubt, anxiety, sadness, any emotion except maybe anger (directed outward or inward, never upward), then God would click his teeth, shake his head, and move the lever to the OFF position. I mean, what is the story about Peter walking on water if not a way to browbeat Christians with the message that if you show weakness or look away from Jesus for one tiny second, you’ll sink beneath the waves? That’ll keep you up at night. If I wasn’t feeling strength, it was because I didn’t have enough faith and God shut off the strength available to me. Or, strangely enough, sometimes He would shut off the strength just for the hell of it (see: Job), which is a real jerk move.
That was then. Now, with the help of my faith deconstruction, I’m finding a very incarnational understanding of God. God is not standing up in heaven, watching me through a telescope. She’s not even with me. She’s in me. Maybe (gasp) there are times where we are indistinguishable from one another.
I know, I know. That sounds like super weirdo, new agey stuff. But if we believe that Jesus can be divine and human at the same time, why can’t I at least be a little too? Nadia Bolz-Weber talks alot about the Lutheran theology that we are all sinners and saints and the same time. There’s alot there that resonates with me- that two opposite things can coexist.
Sinner and saint.
Human and divine.
We like things to be in neat, tidy boxes but I have a hard time reading the New Testament and getting anything but mixed signals and crossed wires. Jesus is God but He’s also God’s son? He came to fulfill the Hebrew law but He also broke it? The Holy Spirit is God in us but God is only one being?
There’s nothing neat and tidy about it.
So, what does God in me mean? For now, it means I go back to my breath. If I believe that God had a hand in my creation, that my first breath on earth was God-breathed, that God’s name Yahweh could have literally been a breathing in and breathing out, then I can find strength in my breath because I can find God there.
You see, my younger self believed that God was a separate and sometimes cruel master who was far removed from me. She also believed in strength that had been brewed in a radioactive pit of toxic-masculinity. “You’re only strong if you show no fear, if you have no doubts, if you weep no tears. Strong people eat steak with their bare hands and show no weakness.”
What a load of malarkey.
How novel for me to be both strong and scared, strong and sad, strong and vulnerable. I can’t think of anyone in the Bible or Christian history that harbored those paradoxes at the same time. Like, no one actually wept in the Bible, even though they were literally claiming to be God? Right? (Author’s note: Sarcasm.)
My understanding of God has changed, yes, but so has my understanding of strength. If I am being honest, it has been going through things that were exceptionally hard that taught me this. It has also been being around people that have gone through hard things and seeing their faith. Hard things really do refine us and teach us what’s important. The important thing isn’t “showing no emotion”. We’ve totally missed the point if we think it is.
I have done some really hard things. There have been times where I felt like I was being crushed, where I felt like I was being pushed closer and closer to the end of the gangplank. But, to my knowledge, I have not curled up and died yet. Yeah, I might have cried or screamed or thrown my cellphone across a hospital room. I might have argued with God and called him a dick. I certainly showed “weakness” as my younger self would understand it but I can no longer believe that having emotions, literally an integral part of being human, means that I’m not being strong.
I can cry, I can scream, I can be afraid. None of those things make the world come to a screeching halt. Certainly none of them make me drop dead on the spot.
I’m still breathing.
I am strong.
I am strong precisely because God, the same God who designed me, who gave me my first breath, is still here. She hasn’t gone anywhere and won’t, until my designated time. Until then, I can hang with the idea that life is going to throw me curve balls. Sometimes, they might even be basketball-sized curve balls that knock me out for a bit, but I am strong, so much stronger than I ever thought possible.
God is with me and you. I believe God is in me and you, even when we feel weak.
We are strong.
Now, whether She’s wearing denim overalls and a straw hat is up for debate…
(This has been focused on my personal understanding of strength but be prepared for a more communal theory of strength that is forthcoming. We need our people too).
While we’ve been able to escape a cancer diagnosis for now, many people are not so lucky. My friend Veronica just received a breast cancer diagnosis, and like many Americans, doesn’t have health insurance. If you feel so moved, please contribute to her GoFundMe for medical expenses.
You’re one of the strongest women I know!
Where can I read more specifically about your faith deconstruction?
Hmmm. Lemme send you an email. There are many layers!