Where Was I?

when the first doctor said, “I think something is off…”?

I was in Vail, Colorado

on vacation for our family of three,
          already cut short due to the death of my grandfather.
Girlie was four and more excited about the swing set near the hotel than the mountains.

You got sick.

Sick enough that I found an Urgent Care.
The doctor there, whom we did not know, put together the puzzle pieces of: 
         low white count,
         recent discovery of one dozen skin cancers,
         her diagnosis of Hand, Foot, and Mouth disease
and asked me to
leave the room
so that she could tell you


that she was worried you had AIDS.

She was right that something was off.
She was wrong about the name.

when I found out it was Fanconi anemia?

I was in our bed.

You had returned home from a work trip to Honduras late the night before.
We had missed you so and
woke up the first morning you were home
thrilled to be together.

Before we got out of bed,
you told me about

The Email.

The one received while in Central America.
The one in which the doctor asked you to call him
and then,
upon realizing you were out of the country,
gave you life-changing news via email,
news you shared with me that morning before we got out of bed.

The negative test result for Fanconi anemia
received months before

Was False.

The machine had been inaccurate.
The machine had been inaccurate.
The machine had been inaccurate.

Now that the machine was fixed,
the results were correct and also positive. 

Strange how “positive” can mean such different things.

when I realized we would never adopt again?

I was sitting in an exam room at the Mayo Clinic,

Just hours after hearing about The Email,
Reeling over the news that after all this time of uncertainty,
symptoms without diagnoses,
directives to, “Just go live your life,”
we had a diagnosis.

Too new to it to understand the physical implications,
my mind instead jumped to the
adoption paperwork
that had been started for
       not one,
       but two
       from the Congo.
Children to add to our family of three.
Children who would give our girl
       Fellow adoptees,
       People in the house who looked more like her than us.

This was the plan.
It was never the plan to have one child.
It was never the plan that our two white faces would outnumber her beautiful brown one.

And yet,

With a diagnosis came uncertainty about everything,
Everything except the fact that adoption was no longer part of the plan.

When I got the call that the tear in your esophagus,
           (the one that was the worst they had ever seen at this major hospital)
           (the one caused by weakened tissue from radiation, irritated by chemo-induced retching)
           (the one that meant you vomited blood for days on end until even the Pastor said, “Is he going to make it?”)
wouldn’t need high-risk surgery after all?

I was in the hospital cafeteria,

Eating a soggy grilled cheese sandwich
In the late-night moments before the cafeteria closed for the day.

Our friend was with me and when I relayed the news to her
        She wept with relief,
        She thanked God.

Across the table from her,
        I ate my sandwich,
unable to enjoy the luxury of relief,
that though one bullet had been dodged,
more would find you even as the current wounds bled.

When I realized that you would need to have your hip replaced?

I was in a coffee shop

Meeting with a fellow young bone marrow transplant wife.
As we talked about our husbands’ ailments,
I mentioned that you had been talking about an ache in your hip.

“Oh, that’s Avascular Necrosis,”

she said as she bit into her scone.

“The high prednisone use after transplant causes that.
My husband has had two hip replacements and a knee. His elbow is next.”

In that small café,
I knew your diagnosis
and next procedure
even before you did.

When they described surgery to remove cancer from your tongue?

Sitting in the same clinic we’ve spent hundreds of days in before, often hearing details about upcoming procedures.

This time, however, I began to realize we were in a different realm.
Binders were presented with photos of tongues after surgery and
photos of wrists after skin was removed to repair the tongue,

We’d never been shown photos before, especially none this gruesome.
We stayed in the room as specialist after specialist took their turns with us, 
“preparing us” for the unpreparable. 

“There will be physical therapy for his wrist.”

“He will have a tracheotomy when he wakes up from surgery.” 

“There will be speech therapy where he will re-learn to
swallow, eat, and talk.” 

Those were what got me. 
Those last two statements.
They signaled that though we’d already been through
all kinds of hell,

A new terrible version was upon us.

When they said they would remove your bladder?

Sitting in an exam room

Already having played out in my mind what I thought would be the
Worst Case Scenario:
Cancer diagnosis with a debate about the benefits and risks of chemo and radiation.
That was the worst possible conversation I thought we would have.

Never in my life,
In my wildest nightmares
Would I have imagined that she would say,

“We are going to remove your bladder.”

You would think that after hearing:
“We’re going to almost kill you by filling you with poison and radiation and then infuse your brother’s cells into your body.”

“We’re going to remove your hip and replace it with a metal one.”

“We’re going to remove half of your tongue and replace it with skin from your arm. We will then replace the skin from your arm with skin from your leg.”

“We are going to take an artery from your arm and move it into your neck.”

“We are going to use lasers to slice open your eye to remove the lens.”

“We are going to rub lotion with chemicals on your scalp and then put you under a special light so that the cancers will burn away.”

“We are going to put a tube into your stomach so that you can eat without your mouth,”

That I would be

Ready For Anything
I wasn’t ready for that.

When you went through thirty days of radiation and chemo,
a protocol that had killed more people
with Fanconi anemia than it had saved?

I was sitting in the waiting room of the radiation suite,
My hands resting on the medical photos of the inoperable throat cancer the radiation was trying to eradicate.
My eyes were closed.
My prayer was the same,
each day
for thirty days,
“Only the cancer, Lord. Kill only the cancer. Leave the rest of my beloved intact.”

When they sent me away,
saying, “No visitors are allowed,”
even as I pointed out that I am no visitor,
I am your wife?

At the door of the Emergency Room,
at the beginning of a global pandemic,
when all the rules had changed.

Perhaps it was the face shields that prevented them from seeing
that my place was there,
by your side,
that I was so much more
than a visitor.

When I signed up to be a caregiver,
to be your caregiver?

I was standing at the front of my childhood church.

A child of 22,
Dressed in white and lace,
Proclaiming with all of the confidence and naivete of a young woman in love,

“In sickness and in health… 
                                              …’til death do us part.”




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12 Responses

  1. A good (tough) read and lyrical enough to make it into your brain and "stick" there along with the wide range of emotions hanging on those words- thanks for sharing.

  2. This is so powerful, Allison. Poignant, compelling, infinitely sad. I have tears in my eyes reading your words and knowing in my own way how it all feels. You are a powerful, beautiful writer, but did you have to have such difficult material to work with? Wish I could hug you in person.

  3. God bless you for having the courage to write these truths and welcome us into your negative space. I agree with the previous comments. I hope the creative process provides a little bit of maintenance for your "Honda Civic". Still praying for your family…

  4. Allison this so beautiful, painful but beautiful all at the same time. I am so glad that Sean chose you as his "caregiver." Not everyone could do what you do and with such grace, integrity, compassion, passion and love. You both are such amazing people. I miss seeing your faces in person.
    Your friend from afar,
    Dana Foote

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