In January we celebrated Selah’s birthday at her Waldorf preschool. I was invited to watch the ceremony and as soon as I walked in and saw her, I was choked up. She was adorned with a crown and cape and invited to circle round a centerpiece of candles as we all sang (to the tune of The Farmer and the Dell), “The earth goes round the sun. The earth goes round the sun. The earth goes round the sun, now Selah is one.. two.. three.”
I watched her beam with excitement. Excitement that she wore the crown. Then she circled the candle fairies. Excitement that she was being celebrated.
Only for a moment, dark and broody from the region where cancer and grief have carved valleys inside me, did I think, “I wonder when you will die. I wonder when you, too, will get sick. How long do I have you for sweet girl?”
Who the hell experienced their precious sunbeam of a three-year-old and wonders when they are going to die? I do. Relapsed cancer has a way of reminding me that I, in fact, know nothing about who lives and who dies. It’s not an oppressive concern, but just a low simmer. Always there.
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In college I took a couple of classes on various topics of Islam. I ended up getting to know a group of students in the Muslim Student Association and we’d hang out between classes. Often when speaking about their plans for the weekend, for an assignment, for their future career, they would state their plan and follow it with, “inshallah.” It means ‘if Allah wills or God willing’. When said in conversation it doesn’t make a big proclamation per say, but sounds more like, “And so,” or “So, yeah.”
I always appreciated how casually they said it, confidant in what a loose grip on the personally had on their future. Perhaps because I have a bit go baggage with cliche Christian terms lobbed around in a time of suffering, it never felt like enough when I replaced it with the English translation, “God willing.” Like the word couldn’t actually be translated. The place in my heart where the concept had taken root could only feel the meaning with the term: Inshallah.
Now, obviously saying Inshallah isn’t as neutrally received as God willing. So I tend to use them both, but only to appease the masses.
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Recently I’ve been thinking, and as such trying to write, about the season we are in with Beaudin’s treatment. March 2021, what we thought would be the final month of this nightmare. His last L.P., his last dose of intrathecal chemo, his last dose of oral chemo, his last lab work up, etc. The finish line.
Since diagnosis in January 2019 we have been counting down towards these dates. And now that we are here, we see it’s not actually the finish line we had begged for. It’s been hard to reconcile how to mark to completion of this season when the season to come feels looming and full of unknowns. How do we celebrate getting through something from the precipice of another stormy sea? It feels complex and difficult, and yet, not marking these events feels it’s own kind of wrong.
I mentioned this to a friend yesterday in a teary text. Being a cancer mom herself, she was quickly on the same page. She gets it. She knows what it means to be verklempt that your son may be done getting a neurotoxin pushed into his spinal fluid, and also panicked that this may be a false hope. I told her I felt wrong for caveating everything with ‘God willing.’ She reminded me that ‘God willing’ is the only way any of us will live to see another day. And sent me over this verse for review, “It’s not panic, it’s scriptural,” she whispered. (I mean it was a text, but I heard it as an encouraging whisper.”
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Last night I laid in bed and had a conversation with myself. It always starts as me replaying a conversation I had with someone else (this time the friend mentioned above), but sooner than later ends with me creating an entire dialogue that didn’t actually happen. I used to think I was just falsely recalling the conversation, but have come to figure out, I am in fact just talking to, engaging with, the parts of me that were subconscious during the initial conversation.
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Beau had his last poison to the brain today, God willing. Gah, I want to just say it was the last, but I feel smothered by the fear that it wasn’t actually, so I will just say God willing. I hate that my whole life is now some caveat of God willing.
All of our lives are caveats of God willing, some of us just acknowledge it.
Yeah, I just feel like I am hedging my bets in case this doesn’t work.
Why do you think you are doing that?
Because I can’t just say, “This will work.” or “That was his LAST chemo.” because I don’t actually know that! And what everyone wants is some finish line, hurrah, cute picture with a sign, “last dose of chemo” and I just feel like right now my sign would say, “Well, hot damn, we survived today. Yet again. Don’t get used to it.”
Is that what everyone else wants, or is it what you want.
It’s what I want. And I can’t have it. Or I can’t know that I will for sure have it. And so I hedge.
Maybe that’s not hedging. Maybe it’s just surrender. None of us should get too used to survival.
Yeah.
We don’t know that it’s his last chemo.
God, I want it to be.
But I don’t think that’s why we should celebrate. We don’t celebrate a birthday because of what is to come, we celebrate because of what has come.
We survived the unimaginable.
The earth went round the sun, and we all made it out alive. Praise be.
Praise be.
We don’t celebrate because no troubles will come, we celebrate because troubles came and we have one more chance to pause and see that we made it. Selah.
Pause and see that we made it. Selah.
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Selah. A time to pause and carefully weigh the meaning of what has transpired, lifting up our hearts in praise to God for His great provision.
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Selah. We made it.
I just don’t know what’s coming. I hate thinking that I’ll bask in the “The last dose of chemo!!” glory only to find out that this road is long and infinitely more treacherous.
Well, let’s Selah. And it’s a celebration for what we got through, not a proclamation for whether it was the end or the beginning.
I just want this to be the end.
Inshallah.
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I want to write a cohesive essay on what it looks like to move forward scared, to mark the passage of time with thankfulness and celebration, but also awareness that we haven’t a clue what’s coming. Some days it feels like ‘haven’t a clue’ is walking around waiting to be sucker punched directly in the face. And then somedays it feels like ‘haven’t a clue’ is just simply and exhaled whisper of “inshallah.”
Guys, did you know we aren’t in control? I know, right?
Yesterday Beaudin had his last intrathecal dose of chemotherapy. The last time that a neurotoxin will be pushed directly to his spinal fluid. His last fucking dose. Inshallah.
783 days with 20 lumbar punctures, 2 transfusions, 125 shots of blood thinner into his thigh, 3 surgeries, 3 ER visits, 2 hospital admissions, 53 hospital clinic visits, AND 11 different chemotherapy drugs as follows: Dexamethasone 182 doses,Vincristine 25 doses, Pegaspargase 2 doses,IT cytarabine 5 doses, IT methotrexate 22 doses, Mercaptopurine 565 doses, Thioguanine 14 doses, Cytarabine 11 doses, Oral Methotrexate 80 doses, Doxorubicin 3 doses, Cyclophosphamide 1 dose.
Yesterday he laid wide awake for the last time while a 3 inch needle was put into his spinal column and a sample fluid was taken. Inshallah.
Yesterday he checked-in to the hospital, had his height and weight taken, had his port accessed, received a lumbar puncture with intrathecal chemotherapy and completed his original diagnosis.
Yesterday we walked out of the hospital for the last time under his original diagnosis. We finished. We survived.
Inshallah, this is the end.
The Heavy Wait 