The Veil Was Thin 01/22/2014

I want to share a particularly difficult time in our lives, a time when everything fell apart. Why? Because I have never experienced anything so difficult before, and never have I seen such miracles. Truly, our lives from this time on have been forever different.

My sweet little trooper

It started at the end of February 2013, when Everleigh went to the doctor's office for her second round of vaccinations. We knew from our first experience with vaccinations that things would likely be difficult, but we felt better prepared. Everleigh had her typical fever and fussiness, plus some seizure activity. We hadn’t seen any seizure activity in 6 weeks, but we were not surprised by some small activity following vaccines. But after 48 hours, it seemed to resolve, and Nate and I breathed a sigh of relief. What a little trooper! We’ve got this!

But a few days later, Eveleigh’s body turned against itself. A sudden autoimmune reaction, likely triggered by the vaccines, caused her to go from living a seizure free life to 20 seizures a day. She also developed a new and highly disturbing neurological phenomenon known as autonomic storming. Her heart rate would shoot up to the 230’s, her respiration rate in the 100’s, and her body would swell until she looked as if she would burst. These episodes would last 2-3 hours at a time, and it was obvious that they would leave her in excruciating pain, pain that 2-3 doses of IV morphine couldn’t touch. We brought Everleigh into the hospital after her first storm-we had no idea what was happening to her and couldn’t make it stop. She ended up staying for six weeks. During that time, her very committed team did everything they could to try and help her-new medications, steroids, the ketogenic diet-nothing was helping. It was just getting worse, and at an alarming pace. Everleigh began losing the skills we had worked so hard for-she couldn’t take even a sip from her bottle without choking, she stopped moving her arms and legs, couldn’t hold up her head, and could no longer smile or laugh. She could only communicate with her eyes, and all she wanted was for us to hold her and make it stop. Then, one morning, a neurologist from her team, Dr. M, came to see me. I was by myself and holding Everleigh during one of her precious naps, admiring how peaceful she seemed. The doctor sat down and,  as gently and kindly as was possible, gave me the worst news I have ever received: our sweet baby was dying, and there wasn’t anything left to do for her. She wasn’t responding to the most radical treatments, was too young for any therapeutic surgical procedures, and medications from every class of anti epileptic drug had not helped her. The neurologist explained that because of the intensity and progression of Everleigh’s neurological issues, she would either pass away from excessive brain damage or her little heart would give out under the combined strain of asystolic pauses during her seizures and the extreme tachycardia during her storms. We had 3 choices: we could surrender her to medical foster care where they could attempt to keep treating her through IV therapy (which so far had been unsuccessful), we could have her placed in a medically induced coma (which she may never wake up from), or we could take her home and enjoy the few weeks she had left with us. The choice was obvious. She was coming home so that she could pass away in peace and surrounded by her loved ones.

The hardest decision we ever made was to come home

Later, Everleigh’s Primary Care Pediatrician, Dr. SF, made a special stop by our hospital room to extend her condolences, offered to continue supervising her care once we got Evey home, and advised us to call our families. It was at this time that we opted to have her g-tube (surgically implanted feeding tube) placed, so that we could provide her with the best care from the comfort of home that was possible. My family arrived from California 2 days later, and we spent Easter Weekend celebrating the life of our sweet baby and the eternal promises made by the life, death, and resurrection of Jesus Christ. The next Friday, it was time to bring Everleigh home. We had everything ready to go and were about to put her into her car seat when she went into another storm. Nate and I decided that we would wait in her hospital room until the storm ended so she could ride home as comfortably as possible. Our nurse agreed, and held off on officially discharging her until we were ready. 3 hours into the storm and after having used all of her rescue medications, the storm wasn’t showing any signs of abating. We called the night Pediatric Resident, who said he couldn’t offer anymore meds or support for her. Nate and I began to get super worried-Everleigh had never had a storm over 3 hours long. At the 4 hour mark, Everleigh began throwing up blood and still showed no signs of coming out of her storm.

Hang on just a little bit longer

Nate and I felt suddenly overcome by an undeniable feeling-it was time to go home, or she wouldn’t make it in time. She was being called back and her time with us was almost gone. The veil was thin. It was a strange feeling: terrifying, yet peaceful. Nate gave her the most painful and courageous blessing a father could give. He commended sweet Everleigh back into the arms of our Heavenly Father and gave her a choice. If she wanted to, she could return to heaven and have her pains and burdens forever lifted. But if she wanted to keep fighting, Mommy and Daddy would do everything to care for her and give her the best life possible. We sobbed as we carried her in our arms to the car, followed by a sober caravan of the nurses who had loved and cared for her the past 6 weeks. We said our very solemn goodbyes and loaded her into the car.

We got home at 2am. As we walked through the parking lot, down the path towards our apartment, we passed the playground. Nate stopped, took her from my arms, and proceeded to go down the slide twice. We snapped a picture of the only promise we could keep-that she would one day play on the playground like the other kids. We brought her inside, got her equipment set up, swaddled her, and laid her in our bed where we held her, and sobbed, and waited.

Going down the slide

Hittin' the playground at 2am

Keeping one last promise

At 6am, 8 hours after the storm had begun, our prayers were answered and our miracle arrived. The storm finally broke and Everleigh fell into a deep sleep. If she had not been wearing her heart monitor, we would have thought she had passed. With grateful tears in our eyes, Nate and I squeezed each other’s hands, kissed her on the head, and fell asleep with her in our arms. She slept for 18 hours and enjoyed a full 24 hours with no neurological issues. We knew then that she had chosen to stay, chosen to fight. We gave her to God, who mercifully returned her back into our care. We have lived everyday since then tyring to keep our promise-to give her the best life we can.

Do I know why things happen? Not always. Sometimes I wonder and ponder to myself, and these are the answers I have found:
This night plays in my mind everyday. It reminds me to be grateful, to be faithful, and increases my love and admiration for our precious girl and for our Heavenly Father ever more. Is God really there? Yes. Does he hear and answer prayers? Yes. Are families forever? Yes. Can we do hard things? Yes. Have we been blessed? Infinitely.

Thank you for the love, prayers, fasting, and service that have been given on behalf of our family. This miracle is as much yours as it is ours. We love you all so much and pray for you all daily. We think of you, and miss you, and cherish you deeply.


I know that I can say that we stand stronger than ever, our conviction ever rooted in Jesus Christ and in the plan of a loving Heavenly Father, and find reasons to have joy everyday because of this experience. Treasure every moment my friends, for each is precious. Thank you for reading, dear friends and loved ones.