You know, it’s funny, I could not have imagined I would still have any new words left about all of this at this point, but they still keep pouring forth, though I know the theme is the same: Jesse is dying. Our kids are yearning for something we cannot give them. I am increasingly shattered into pieces as the visits to doctors pile up and the words of despair continue to flow out of their mouths. A few weeks ago, I gathered the kids around our dining room table where we sit in the mornings to read through Isaiah and talk through whatever is coming that day. These mornings mostly blend together into one big memory, but occasionally, there is one that stays with me. I remember this one because it was one of the times I’ve had to sit with our kids and remind them that death is always drawing near for their daddy.
When I left you last, we were in wait for results from a different type of MRI. We were in wait for news of whether or not Jesse would be able to get the device for seizure control implanted into his brain. Since then, we have cancelled all appointments related to his seizure control and replaced them with frequent visits to the med center for experimental treatments that may or may not help kill the tumor we found has both spread to Jesse’s brain stem and has begun to shift his mid-line over to the right, again. In a few weeks time, we have started three medications and stopped two of them when they started to impair his kidney function. We have driven to and from the med center three times a week every week for weeks in the middle of a pandemic, leaving our children at home to wait and wonder. No one can step into our home because Jesse is “at risk”. The entirety of our family is locked down in Louisiana. And…these treatments might not even work. We will continue on with this until his next set of scans tell us if any of this is accomplishing anything. Then, we will either continue because it is helping or we will stop because it is not.
Jesse is dying. This is why I gathered our children around me at the table that day to tell them what the scans told us. This is why our youngest two wept. This is why I wept with them. This is why we grieve and this is why we hope: Jesse is dying. He is. But he is also living. Jesse is living.
There are far worse things than death. Did you know? When you have been staring at mortality with every breath of every moment of every day for close to 5 years, you know no amount of panic over death’s existence will stop it from coming. You know death has no power. No power. It is a liar, death is. A deceiver through and through. And it works closely with its accomplice, fear. They play off of each other to blind us to reason and hope. They are skilled masters of mankind, masquerading as self-preservation and worldly rationale. They are the voices which whisper despair into already fragile souls, carried to the masses on the winds of panic.
But if you listen, if you just stop and listen, you will hear the steady hum of hope whirring from the depths. Take off your shoes, place bare feet to the earth, and feel the vibration of the bass note of joy reverberate through your very core; and your whole body, without any prompting from you, will begin to hum in tandem, hope shaking your soul. And take off your shoes you should, because the destruction we stand in (in Cancer and in Covid) right now is holy ground. Destruction makes the way for restoration. It always has.
From the beginning-in the garden where everything was right and good and peaceful, when God gave life to man, to another beginning-in the garden where everything was wrong and awful and chaotic. Both times, the lips of God touching the dirt of earth to bring new life to humanity. In the beginning of mankind: His life’s breath filling the lungs of the one made in his own image. His lips to man’s nostrils, close enough to force air into lungs- what an intimate act, what a sacred and holy start. In the beginning of the last real end: Christ in the garden, lips to the dirt, heaving breaths into filthy earth, His blood and sweat and tears mingling with ashen ground, His surrender giving life to mankind once more.
This is where my soul is finding rest, now. This is where my soul has found rest for years. In the gardens of Gethsemane and of Eden, two places bound together by the miracle of life. In the midst of what I know is a very bleak situation, I just cannot be hopeless. Not when I know my lungs inflate with the very breath of God. Not when I remember how He keeps making the filthiest places holy ground.
In the night, we stare our darkest, filthiest places in their eyes. We put our faces to the ground and mourn the lives we thought we would be living. We ask God to take our cup of grief from us. We beg Him for any life but our own. Then, we get up and surrender to the circumstances of our fractured humanity. We live knowing pain is near. We live knowing we are powerless against the consequence of sin. We live knowing death is coming. We live seeking and yearning and aching. But we LIVE. We live.
Dying. Mourning. Weeping. Rejoicing. Fearing. Longing. Waiting. Hoping: We live. We live because He chose to die with our dirt on his parched lips. We live knowing we do not have to be powerful, because He is Power, itself. We live wholly redeemed because He died willingly forsaken.
Jesse is dying, friends. Faster than we would like. We do not know how long he has. We do not know if the treatments will work. If they fail, we are told there is little else to be done but wait until the Lord fulfills His promise of healing for him. We have been told this countless times since September 2015. I have lived with an ever-present ache within my soul that is like no other for so long, I do not remember what it is like to breathe a single breath without it. Our kids, too. We live a life of the day between the grief and the glory, a life of Saturdays. We will carry the ache of cancer’s destruction until the day we are called home. But we know, no matter how long this night lasts, the day will eventually dawn, blazing sun consuming the darkness of death like fire. Until that day comes, we will rejoice in the fulfillment of the many prophecies of Isaiah. We will rejoice because He who was foretold as coming to “destroy the burial shroud”, to “destroy death forever”, has done just that. We rejoice even as we ache, because “the day when it will be said, ‘Look, this is our God; we have waited for Him, and He has saved us.’”, has come.
Sunday is always coming. Sunday is always coming.
Lord, you are my God;
I will exalt you. I will praise your name,
for you have accomplished wonders,
plans formed long ago, with perfect faithfulness.
For you have turned the city into a pile of rocks,
a fortified city, into ruins;
the fortress of barbarians is no longer a city;
it will never be rebuilt.
Therefore, a strong people will honor you.
The cities of violent nations will fear you.
For you have been a stronghold for the poor person,
a stronghold for the needy in his distress,
a refuge from storms and a shade from heat.l
When the breath of the violent
is like a storm against a wall,
like heat in a dry land,
you will subdue the uproar of barbarians.
As the shade of a cloud cools the heat of the day,
so he will silence the song of the violent.
On this mountain,
the Lord of Armies will prepare for all the peoples a feast of choice meat,
a feast with aged wine, prime cuts of choice meat, fine vintage wine.
On this mountain
he will destroy the burial shroud,
the shroud over all the peoples,
the sheet covering all the nations;
he will destroy death forever.
The Lord God will wipe away the tears
from every face
and remove his people’s disgrace
from the whole earth,
for the Lord has spoken.
On that day it will be said,
“Look, this is our God;
we have waited for him, and he has saved us.
This is the Lord; we have waited for him.
Let us rejoice and be glad in his salvation.”
Thank you for sharing so transparently and raw. Yet what encouraging words of life, hope , pressing on …as in Psalm 27:13 I remain confident of this:
I will see the goodness of the Lord
in the land of the living.
14 Wait for the Lord;
be strong and take heart
and wait for the Lord.
praying for each of you .
Hope you’ll have a Blessed Easter. I love all of you.
Happy Easter May God bring y’all some comfort. Praying 🙏
My heart breaks for you, Jesse and the children. God is a mighty God, and as hard as life is, y’all are blessed with a faith that will carry you through. Y’all are always in my prayers. Your family is very special to me.
I grieve AND hope beside you, precious one. May our Lord continue to give you all His strength and courage.
Y’all are in our thoughts and prayers! God Bless you!
I am one that will continue to pray for complete healing! Love your posts and your love for the Lord and your family!
Ashley, I don’t often reply when you post on your blog, but I never stop praying. The Lord puts you and Jesse on my heart several times a week. My heart is broken for what you have already lost but rejoices in what you have found in this journey. Know that I am praying for HEALING for Jesse, for strength and stamina for you, and peace and comfort for the kids.
The Lord has given you the gift of painting a picture on our hearts with art of words. We feel your pain but we feel your depth of faith and hope as well. Thank you for sharing such amazing words on HOPE.
I would love to share a small section of your thoughts on HOPE on my weekly Facebook Prayers from my Back Porch. This week we are focusing on hope. Give Jesse my love and I wish we were back in the days of drinking that amazing coffee you would make for me when I stopped by. God bless you richly!
Share away, my friend. I think of you often, as well, and lift your name up to Jesus. Forever grateful the Lord intertwined our lives. ❤️
Beautiful entry. I can relate to some of what you say and understand only a small part of your pain and hope. I am continuing to pray with you for a miracle, and for strength and endurance.
Jesse was a youth pastor at Bay Area when I was in middle school around ten years ago. He was so cool, to say the least. I have prayed intermittently for him and your family these past five years and had no clue how much of this I would personally understand until this past year when my mother was diagnosed with aggressive stage 4 kidney cancer. Your words help fill the gaps and give direction on how my family needs to be handling this with utter faith in Jesus. Every day is a battle, when we all get back on the praying and rejoicing train another falls off in anguish and fear. But I am claiming that fear has no place here. Thank you for your words and sacrifice, people like myself hang onto these Words of hope that you have imprinted in your hearts. I want faith as big as yours. So blessed that God has placed you and Jesse in the fabric of my life to look up to and learn, even just virtually.