Dear Delaney…On Chiari and Seeing and Staying with Pain
“Finding grace in suffering is less about cognitively assenting to the truth of God’s goodness than about letting our souls and bodies be seen. If you are a sufferer, be seen. If you encounter someone’s suffering, tuck your words of God’s goodness away until you’ve first listened with the eyes of your heart determined not to look away from pain.”-K.J. Ramsey, This Too Shall Last: Finding Grace When Suffering Lingers
My darling girl,
I’ve been writing in a journal to you since before you were born. Many of the entries are full of wisdom I’ve collected through the years and want to make sure I share with you. Most of them begin with the word, “On…”
When you were almost three years old we enrolled you at a Montessori school in Akron, Ohio. I would drop you there on my way to work. It was the first time I’d left you with someone who wasn’t family. Just a few weeks into our new routine I received a phone call from the school. “There’s been an accident. Delaney fell and cut her head. We need you to come right away.” It was a twenty minute drive from my office to the school. You tripped while running and the corner of a cabinet split your forehead wide open. When I rushed into the school I gasped at all the blood. A pediatrician mom told me the head is very vascular and not to worry but to take you to the children’s hospital emergency room right away. Your dad met us at the school and drove us there. I sat in the back seat holding a cold cloth to your wound and tried to keep breathing. When the time came for them to hold you down and place thirteen stitches in your perfect brow I couldn’t watch. I couldn’t hold your hand. I couldn’t tell you it was going to be okay. I began to black out and a nurse took me out of the room to sit on the cold floor with my head between my knees. I sobbed while you screamed. Your dad stayed with you.
Next Saturday you and I will fly to New York alone. You have Chiari and need a brain decompression. But it’s not that “simple.” We aren’t sure if your Chiari is being caused by something else like a leak of cerebral spinal fluid. Sixteen days from now you will be rolled away from me and have something called an ICP bolt placed. It will measure your intracranial pressure for twenty-four hours. Eighteen days from now you will have brain surgery.
One of my biggest fears is that you will wake up and look at me in the terror of post op pain and ask me why I didn’t tell you how hard it is.
I don’t want to take for granted you understand what will happen just because your little sister has been cut three times and we are just calling my surgeries “countless” now. I know the trauma of watching us climb into the car or on a plane and leave you behind all these years has settled into a hum of reality. I also know you have been protected from seeing the worst because we always needed specialized care so far away. By the time we made it home we were hurting but healing. You didn’t hear the screams when our IVs blew and no one could get a new vein. You didn’t see the hours without pain meds while we suffered and waited for IV therapy. You didn’t see the delicate dance with each new shift nurse and resident doctor fighting for the best care while not tipping the scales to crazy. You didn’t experience the dreaded day two, the day after the triumphant Facebook posts about being a warrior, the day when all the anesthesia wears off and we wondered how in the world this hurt could be better than the pain that brought us there. You didn’t see the endless parade of helpers that took our vitals and checked the equipment and cleaned the room and brought the meal tray and took it away along with the nutritionist and pain management doctor and physical and occupational therapist and social worker. You didn’t smell the antiseptic hospital odor that oozed from our pores. You didn’t taste the flush of the IV over and over or feel the tearing of the tape off skin while checking wounds. You didn’t see the desperate need to be released from the hospital just to be anywhere else just so we could finally rest.
Today I explained the process of hospital admission and getting ready. I talked about the questions you will answer over and over again. I discussed the awful moment when they will take you away from me and you will be alone in a freezing cold room with masked faces and cold hands moving you to the operating room table while placing sticky leads all over your chest. My body has become just a container for my soul but you are seventeen and no one has ever touched you like this. You are most worried about the catheter and knowing someone will be in your private places after you are put to sleep. It may be the hardest part. They will ask you your name and birth date one more time and do you have any allergies and what surgery you are there for. You will be scared and so ready for the mask and the gentle voice asking you to take a deep breath and another…
I will fight like hell to be there when you wake up. Because you are a minor and we will be at a children’s hospital they tell me I can. You will be confused and groggy. Your throat will hurt from the intubation and your mouth will be so dry. They will say your name and ask you if you are in any pain. And you will begin to grapple with what’s just happened. You will want to know how the surgery went, how large the incision is and when we can go home. From the moment you wake up you will begin thinking about your own bed, and Dad and Danica and Twix and every hard thing after waking up will be the next hard thing you do to make it there.
You rushed me through all this and began to cry. A Delaney cry. Your little nose quivered like a bunny and a tear slipped down your cheek as you quickly wiped it away and said, “It will be okay, right?.” You reminded me you are in pain every day and this is just something you have to do to move on to the life you want. You asked me while you were telling me. And I wanted to reassure you, but I’m afraid too. I’m most afraid of lying to you about any of it, because that’s not what we do. You and I have always been impeccable with our words to one another, one of the four agreements I raised you on.
It was easier for me to have faith with little Danica. I’d been fighting for her since I first heard her fetal heart beat. Laney, I always believed you were meant to fly away from all this chronic illness and suffering. You were to leave with a hard scrabble story of a character building childhood resting on the foundation of God’s faithfulness and the multitudes of kindness that were miracle to our family. I said a thousand times I was holding you loosely. It turns out I’m clutching you girl. But I know every impossibly hard thing I’ve lived and learned about Chiari has brought me to be your mother right now. I have seen the goodness of God in the land of the living. I’ve seen miracles. And I’m pleading with God for one now.
Laney, I promise you I will not look away even once during these next hard weeks and months. I won’t faint and be ushered away. I will not tell you how good God is to clean up the edges of the suffering. I will write this story exactly as it unfolds with the vulnerability of being seen. I will stay. And God will be there too. Nothing about Him will change. He will watch over us and be faithful and work out His great love for us through the pain.
Please Jesus. In the chaos of pandemic and the necessary and holy work of fighting for justice and change please see us too, a broken mother and a hurting daughter who will be far from home in a strange city fighting demons. Please be with Dan and Danica as they are left here. Comfort them. Protect their minds and hearts. Thank you for the community of love surrounding us as we move forward. Please continue to provide our needs and access to care through the generous hearts of others giving and sharing so many will pray. On Chiari, I’m begging you to lead us in the perfect plan for surgery and bring healing in the multitude of ways we need to make this a success. Help us show that honest suffering will always point to You and inspire hope. Our hope remains. We know this too is Grace. Amen.
(Friends, I’m humbly asking you to please add Delaney’s surgery dates to your calendar. They are Wednesday, June 24th and Friday, June 26th at Columbia-NewYork-Presbyterian, The Morgan Stanley Children’s Hospital. Please share her story and ask your friends and church to pray. Use the hashtag #teamdelaneyjayne. If you want to follow her story and receive updates while we are in New York please follow me on Instagram @MonicaKayeSnyder or through Delaney’s gofundme page at https://www.gofundme.com/f/help-delaney-jayne-overcome-chiari
Thank you for giving and making a way. Thank you for praying when we are weary and cannot find the words. Thank you for encouraging. This is such an incredibly hard and lonely place for all of us. We need our people to see us and stay.
Sheryl RobertsJune 8, 2020 at 1:14 pm (3 years ago)
We love you dearly ❤️ These are words when there are no words but we breath pray….
Rebecca KempthornJune 9, 2020 at 11:41 am (3 years ago)
Dearest Delaney, there Te so many, people you don’t really even know, who wish we could take ALL of this away from you, from your whole family. Know that we are all praying and praying and praying. There are angels surrounding you as well. You are so very loved.
Susan Mather BaroneJune 15, 2020 at 10:36 pm (3 years ago)
Your letter to your daughter Delaney broke my heart for her and for all of you afresh. You and Danica have walked this road ahead of her and will be the best support for her. I was reminded of Ecclesiastes 4:12 when I had that thought: A person standing alone can be attacked and defeated, but two can stand back-to-back and conquer. Three are even better, for a triple-braided cord is not easily broken. (NLT) She will be covered in prayer. I pray for her surgery and recovery, for traveling mercies, comfort from pain and anxiety.