Grief. When lightning strikes again


Chiari Lightning

You thought
you had hit
every layer possible,
that you had found
the far limit
of your sorrow,
of your grief.

Now the world falls
from beneath your feet
all over again,
as if the wound
were opening
for the first time,
only now with
an ache you recognize
as ancient.

Here is the time
for kindness—
your own, to yourself—
as you fall
and fall,
as you land hard
in this layer
that lies deeper than
you ever imagined
you could go.

Think of it as
a secret room—
this space
that has opened
before you,
that has opened
inside you,
though it may look
sharp in every corner
and sinister
no matter where
you turn.

Think of it as
a hidden chamber
in your heart
where you can stay
as long as you need,
where you will
find provision
you never wanted
but on which
your life will now

I want to tell you
there is treasure
even here—
that the sharp lines
that so match your scars
will lead
to solace;
that this space
that feels so foreign
will become for you
a shelter.

So let yourself fall.
It will not be
the last time,
but do not let this be
cause for fear.

These are the rooms
around which your
new home will grow—
the home of your heart,
the home of your life
that welcomes you
with such completeness,
opening and
opening and
opening itself to you,
no part of you
turned away.

—Jan Richardson, The Cure for Sorrow, A Book of Blessings for Times of Grief

It was a September afternoon like most others during that season of my life. I’d worked from home all day on database lists ordered from non-profit and political clients through my employer outside Washington DC while caring for my not quite yet 2 year old Danica. A little after 2 pm I would wake her from her one hour afternoon nap, and we would drive to Holy Cross, a Lutheran church about fifteen minutes from our rented house on 35th St. We would wait in the parking lot for the bus from Lake Center Christian School to drop Delaney. She was in 2nd grade. My habit was to arrive a few minutes early. Danica would have a bottle in her car seat, and I would stare at the church steeple, breathe deeply and pray. The spiritual discipline of “hard stops” had saved me over and over. On that particular afternoon my heart was blocked with a sadness and a fear I couldn’t name. We returned home from the bus, and I put a pot of water on the stove for macaroni and cheese. I turned the TV on for the girls to watch a show while I checked in with work to run another list order. I was standing in the little kitchen with the indian summer sun warming my face through the window when the phone rang.

We knew something was wrong with Danica since her neck went crooked in May. They called it ‘acquired torticollis’. I’d managed my telecommuting job and driving her back and forth to Akron Children’s Hospital several times a week for appointments and therapy. Her pain and disability seemed to be getting worse. Finally a physiatrist ordered an MRI under sedation. This was the first time I heard the words “Chiari malformation.” They meant nothing. The doctor kept talking, Hannah Montana was saying “Sweet Niblets” and Delaney laughed out loud as I ran to my laptop and googled the words. I began to weep. The pot of water boiled over onto the stove and floor.

Two weeks ago Delaney saw a neurosurgeon at Phoenix Children’s Hospital. We heard those words for the third time. “Chiari malformation.” Danica. Myself. Now Laney. This time these words meant everything.

Complex Chiari.
Brain stem compression.
Complicated family history.
The doctor kept talking, but I quickly sunk beneath his words.

Since Delaney’s appointment I’ve been in crisis management mode. The fight for access to the many additional imaging orders needed and other specialist consults is all consuming. And it all feels much more urgent because my girl is a senior in high school with very specific plans for college in August. She has always been the one with wings so ready to fly. Except now she struggles to hold her head up.

I’ve moved through the past two weeks in a dense cloud of physical exhaustion, my own very real pain and what I now recognize as grief. But it’s a sadness and loss I’ve never known before. It’s not an opening of an old wound but something new altogether. After all we’ve been through this impossibly hard thing with my Laney has buried me alive.

God is meeting me in this dark place.

I believe there is generous enough grace to hold me there as long as I need to stay.

I believe there is strong enough grace to rescue me when every bit of oxygen is gone, and I must rise.

We will need kindness and shelter to make it through this next storm. I’m so grateful you are here. Thank you for praying for us. Thank you for staying.

“For the righteous will not be moved. He is not afraid of bad news. His heart is firm, trusting in the Lord. His heart is steady. He will not be afraid.”-Psalm 112:6-8

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5 Comments on Grief. When lightning strikes again

  1. Diane Bassett
    February 3, 2020 at 4:12 pm (4 years ago)

    Words cannot express what I’m feeling for you at this time. This is heartbreaking! I know the Lord is with you and He is faithful. It’s sure hard to understAnd! ??????

  2. Lori
    February 3, 2020 at 4:43 pm (4 years ago)

    Here always friend. Praying, hoping, crying, knowing He will not be unfaithful. He will not leave you alone in this but carry you through. I love you so, He loves you more.

  3. Caroll Aleshire
    February 3, 2020 at 6:06 pm (4 years ago)

    So sorry you are going through this again! Praying for you and Delaney.

  4. Carol Crabtree
    February 3, 2020 at 7:47 pm (4 years ago)

    I must confess I hate this so much and I just have to ask in my human understanding “why”? Why Lord does this have to be?” I know, we live in a fallen world. I know that He is able to make ALL things work to the good of those who love Him. And I believe He is sad too. He loved us enough to send His son to this earth to accomplish what no man could have. Still, our finite mind can’t reconcile all these things in our own understanding.
    But I DO know that I have soon SO MUCH honor and glory given to our Lord as you all have faithfully and openly lived out your lives in obedience and surrender. I HAVE to think the same will be with Delaney and I will be praying for her AND for the rest of you consistently. You guys have been a piece of my faith walk and I have grown as I have seen you grow. God is doing a mighty work and is NOT wasting your pain, though I pray He will supernaturally relieve you all and give you many years in the future where you have much more stable health. Delaney, you don’t know me, but I’ve learned much about you through your Mom, and I promise to pray for you faithfully. Much love to all of you. May the peace of the Holy Spirit rest upon each of you and over your household and give you strength for each new day.

  5. Susan Barone
    February 4, 2020 at 2:03 am (4 years ago)

    My heart breaks with yours. I am so sorry. I cannot imagine the shock. You and Danica will be Delaney’s compass as she begins this journey. Praying alongside you.


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