The cell phone had quit ringing, the visitors were gone, the lights were out, and I sat alone resting my head against my daughter’s hospital bed as she attempted to sleep with wires and tubes coming off nearly every part of her body. The only sound was the steady beep of the heart rate monitor assuring me, despite the adrenaline pumping through my body with her every sudden movement, that she was not having another seizure. I sat up, opened the Book of Common Prayer app on my “smart” phone, and went straight to Compline.
The Lord Almighty grant us a peaceful night and a perfect end.
O God, make speed to save us.
O Lord, make haste to help us.
So strange how ancient prayers designed to be general and usable by anyone at any time feel so appropriate… so perfectly particular.
Lord, hear our prayer;
And let our cry come to you.
Be our light in the darkness, O Lord, and in your great mercy defend us from all perils and dangers of this night; for the love of your only Son, our Savior Jesus Christ. Amen.
Be present, O merciful God, and protect us through the hours of this night, so that we who are wearied by the changes and chances of this life may rest in your eternal changelessness; through Jesus Christ our Lord. Amen.
The morning had started beautifully… Sun shining, fresh fruit, cinnamon toast, mama’s hugs and kisses, and Finding Nemo … about as good as it gets for a 22 month old little girl. That little girl, our daughter Eden, was hanging on Jenny’s legs asking for a glass of water while I headed to the bedroom to take off my dress shirt… Then her pleading stopped suddenly and strangely… enough for me to turn around to see what had happened. I turned to see Eden’s body stiffen and then fall over. Jenny cried out. I ran over and scooped Eden up. Her big, blue eyes looked at me with panic as her body arched, and then she stared at nothing, and then they rolled back in her head. Her body started shaking. Jenny called 911. She wasn’t breathing. She turned grey. Her body stiffened more. She turned blue. She wasn’t breathing.
She wasn’t breathing.
She wasn’t breathing.
After two minutes she went limp in my arms. She wasn’t breathing. She was blue. And she wasn’t breathing. I was on my knees weeping and begging her to breath. And then she took a breath.
I would almost say that all the joy in heaven at the Resurrection would not have exceeded my joy at that moment. It was what Tolkien would call a “Eucatastrophe…” Something so good and wonderful that it makes up for all the bad. But our day was just beginning.
The ambulance came and took Eden and I to Dell Children’s Hospital. Jenny stayed with a very frightened Titus until our dear friend Evan arrived to bring them to the hospital as well. The doctors came and told us that many children have seizures and that all would be well. Sure, it was a little disconcerting that she stopped breathing during the seizure, but all would be well. Eden perked back up, and wanted to go for a walk. I carried her out into the hall, and felt her body go eerily stiff in my arms. It was happening again. I cried for help and the hospital staff came running. They laid her on the bed. I watched it all again. Her body went stiff. Her body turned blue. She wasn’t breathing.
Jenny and I stood in the corner while the nurses and doctors attended to our daughter. It takes a very special person to work in a children’s hospital, and my wife and I will forever count those people among the highest blessings of heaven. One minute. Not breathing. Two minutes. Not breathing. Three minutes. Not breathing. Four minutes. We were holding each other and weeping. They gave her a drug that began with an “A” and she stopped seizing. Her breath returned, and her color came back. Jenny and I were holding each other to keep from collapsing. Eden’s eyes slowly began to open, and the nurse called, “Mom, come over by the bed and talk to her.” Jenny immediately composed herself and walked to the bed with such grace and calm that I can barely think of it without tears in my eyes. “It’s alright baby. Mommy is here.”
Eden had two more seizures. They gave her another drug, and told us that should stop them. She had two more seizures. They gave her another drug, and told us that should stop them. No parent should have to watch their baby child stop breathing, turn blue, and lie stiff on a table. We had to watch it six times in eight hours. It is like emotional water boarding. Even now, it is hard to sleep because when I close my eyes I still see it. I wish I could do justice to Jenny’s courage and grace-ful presence for our daughter all throughout the day, but you would have to have been there to believe it. Her ability to to put her fears and tears seemingly on pause to calm and sooth our daughter was a type of strength I have probably never witnessed.
After roughly 40 hours awake, six seizures, a CT scan, an EEG, an MRI, blood tests, urine tests, and more tests, the good news is: Eden does not have a mass in her brain. She does not have any neurosystemic malformations. She does not have bleeding on her brain. She does not have any exotic or dangerous infections. To top it off, they finally found a drug that was able to control her seizures.
The bad news is: They don’t know what exactly caused the seizures, so we have to live with a mystery. She has been diagnosed with childhood epilepsy and will have to be on anti-seizure medication for at least two years.
I am not going to refer to my daughter as an epileptic, and I am not sure if I will tell her (when she is old enough) that she has epilepsy. I don’t want that dark cloud hanging over her head. Of course I will explain seizures to her, and why she has to take medicine, but that will be enough. If the doctors are correct, we have every reason to hope that she will live a normal, full, and healthy life. Jenny and I may carry a special fear in our hearts for a while that we will need to work through, and it may be a few weeks or months before I feel comfortable with her sleeping alone in her own bed again, but I’m hopeful that all will be well, and that all manner of things will be well.
Eden’s favorite movie is Finding Nemo. It is a movie about fish facing some very difficult and frightening obstacles for a father to be reunited with his son. There is one moment in the movie where the father and his companion have to swim into absolute blackness and danger deep in an ocean valley. Dori, the father’s companion, tells him to, “Just keep swimming. Just keep swimming. Just keep swimming.” Sometimes, Eden walks around the house saying it to herself. For some reason, that phrase was a mantra for me in the hospital, and it is exactly what the Ballard family intends to do… Just keep swimming. Please hold us in your prayers.
Special thanks to: Lacey Uhre, Mike & Kirsten Kaiser, and Kari Tornes for watching a sick Titus while we were in the hospital. I hope the vomit washed out of your shirts. My dad Doug Ballard, and Todd & Ben Hillard for helping me keep vigil at Eden’s bedside all night. It would have been a dark, lonely night without you. Evan and Brandi Loomis for all their care and help. Jenny’s parents Joan and Craig for flying in all the way from South Dakota to do anything that was asked of them… company, food, tears, cleaning, support, airing up car tires, wine, and more. My mom and sister Chelsea for threatening to jump in cars and drive here as well. I’m glad you didn’t need to, but we appreciate the love. For the many more who called, texted, offered to come, prayed, watched on Facebook, and held us in your hearts… most of you are known to us with gratitude, but you are all known to God. The Anglican Communion & Catholic Christianity for providing us and millions of Christians with such a thing as Compline for when we want to pray in the darkness but have no words. Glory to God for All Things.
If you have babies, or parents, or friends, or anyone you care about… hold them tight and tell them you love them. Life is short. That ain’t no joke. The most normal days of your life are glorious beyond all hope and deserving if you look at them right. We just forget sometimes.
The almighty and merciful Lord, Father, Son, and Holy Spirit, bless us and keep us. Amen.