In May of 2007, Phillip and I decided we could no longer afford the duplex we were living in so we moved out to a trailer his mother and dad own in Red Rock, Tx. Red Rock is about thirty miles southeast of Austin and a mile north of the Middle of Frickin' Nowhere. It was where Phillip lived when we met and I swore to myself I would never, never, never live there. But, there we were.
The day we moved in, I set one foot outside of the car and a butterfly landed on it. He sat there for a moment, slowly opening and closing his wings, and, I don't know why, but suddenly I knew. With a deep-down, uncanny certainty that this was to be Eddie's last stop. The site where he would shed the chrysalis of this life and fly away from me to the arms of the Lord. I didn't share this knowledge with his dad. Oogie-boogie stuff makes Phillip a little nervous for one thing and for another I did not want to rob him of any hope and joy for the coming time we had with our little man, however long it would be.
As the summer progressed, Eddie's liver disease worsened. The TPN (intravenous nutrition) was necessary to sustain him, but it was killing his liver. Soon his liver stopped being able to process it altogether. Although he was getting enough calories pumped through him to be downright chubby, he was steadily losing weight. His eyes and skin were growing more and more yellow. The food he was eating was helping a little with the liver and nutrition stuff, but not nearly enough. Still, these were happy days. He was a normal twenty month old in every other way: learning new words, learning to use crayons rather than eat them, dancing and playing.
Let me digress a moment to explain what I mean by "dancing." He was mobility-impaired...all of the abdominal surgeries and issues had kept him from ever crawling much less walking. But like his parents, Eddie loved music and he would wave his little hands and clap. In our bathroom there was a vanity along one wall and a huge mirror above it. One of his favorite songs in those days was Gwen Stefani's "The Sweet Escape." It has a really catchy little "woo hoo, wee hoo" at the beginning and throughout and Eddie really got into it. I would hold him up on that vanity, supporting his little hips, and he would sway back and forth and wave his "jazz hands," laughing and smiling at himself in the mirror. It is one of my favorite memories.
In the first week of August, Eddie began to have fevers. It had all the earmarks of a central line infection. We faced a decision. His last line replacement surgery had resulted in Eddie wanting to quit altogether. The point of his central line was to deliver the TPN. The TPN wasn't really working anymore, except to accelerate his liver disease. Either Eddie could make it on the nutrition he ate alone or he couldn't. The inevitable moment had come. We scheduled a surgery to have his central line removed.
When we were admitted and Eddie had to put on a hospital anklet, he screamed like it had burned him. It made me feel glad that this was, really, the last time he would have to be in a hospital. His surgery was quick and easy and we were able to take him home immediately. Everyone was so loving and supportive of our decision. Our hospice doctor made sure we had oxygen support and pain medications and we went home.
Phillip and I were still praying for the radical miracle. I still had faith for it, but, just as with the sinking certainty I had felt with the butterfly encounter when we arrived at our house, I felt that God's answer this time was "no." For a couple of days, it seemed like things were going well. Eddie was eating and interacting normally. But things changed on Thursday night and by Friday morning it was pretty clear that the end was near.
That morning I still prayed for miraculous, radical healing. Desperately, fervently, I prayed. As the day progressed, though, and Eddie continued to decline, my prayer changed. I gave God two options. He could, as I had begged Him, radically heal my twenty-two month old son. This option came with lots of promises. Eddie and I would be on every television program telling our story and giving praise to God. This was Option A and the desperate desire of my heart. If that wasn’t God’s will, however, I helpfully supplied Option B. If He was going to take my son home, He needed to go ahead and do it. Now. Not this slow, steady decline. It was far too painful, both to Eddie and to me. So, now God had it. My acceptable two options: a Lazarus-style miracle or instant death.
God wasn’t listening to me. Eddie lost his sight, his eyes becoming soft and dry. He stopped eating and drinking. The hospice nurse came to check on him. I asked her how long this could last. Death was a funny thing, she said. She could leave and immediately have to come back to declare him dead or this could last for days. The word “days” resounded in my heart like a shotgun blast. I could sit here at our bedside and be forced to watch, helplessly, as my child wasted away for days.
By this time, I had run out of words to pray. In my desperation, I still reached out in faith. I remembered that when Pope John Paul II prayed, he simply came into the presence of God and said one word: “Yes.” This became my prayer as well. The nurse left around eleven p.m. and as I sat next to my tiny toddler, my heart breaking, I internally prostrated myself before God with that word on my lips. “Yes.” Your will be done, even in this. Immediately, my agony was accompanied by a quiet peace. The pain did not leave me but I knew that Christ was sitting right there with me as we endured this together.
At two-thirty Saturday morning on August 11th, 2007, I took a moment to be alone with God. I washed the few dishes in the sink, talking to God. “Thank you for Option C," I said. "I don’t understand it. I don’t like it. But I know you love me and you love Eddie even more than I do. So whatever this is, it’s for our good. So, thank you and I love you.”
I walked back into the bedroom, looked at Eddie, and knew that he was gone. In those few moments, his spirit had gone home. I wanted the first words I said to be words of faith. God’s peace enveloped me and enabled me, even with a shattered heart, to say, “Naked came I out of the womb and naked go I thither. The Lord giveth and the Lord taketh away. Thanks be to God.”
There is no moment like the moment your child dies. Nothing more heartbreaking, nothing more surreal. But God was with me. He was listening to every single one of my prayers. The shortest verse in the Bible is John 11:35. It states simply: "Jesus wept." Even though He was about to raise Lazarus from the dead (and He knew it), when he encountered Mary's grief, He cried with her. I think He did this so that we would know that at these moments, He weeps with us as well. We are never alone in our grief. Not in the moment that my son left this earth and not while I sit here, weeping, and write about it. The Lords sustains me...and weeps with me.
Phillip and I called hospice. We lovingly and reverently washed our baby's body and changed his clothes. We placed him in his crib and covered him with a blanket. It was impossible, but we did it. We loved him and we honored him, both in life and in death. When our hospice nurse arrived, her eyes were tear-stained but she smiled and said, "Our boy is free and he is flying."
She didn't even know about the butterfly on my foot back in May or that I had spent most of the day rocking Eddie and singing "I'll Fly Away." She did know the truth, though. That as hard as it was for all of us, Eddie was free. He was running into the arms of the Lord. Running! Like a normal nearly two year old. His stomach didn't hurt anymore. He would never shed another tear. He was perfect, whole, and home.
It was nearly dawn by the time all of the administrative stuff had been taken care of. The van from the funeral home pulled away from our house just as the sun was breaking over the horizon. It was a beautiful morning and a cool breeze was blowing. Phillip and I sat down in the lawn chairs in our front yard and watched the sunrise. We didn't say anything. Really, when you've just been through what we had been through, there isn't a lot to say. A butterfly landed on my arm, opened its wings a couple of times, and flew away. There was so much ahead of us: phone calls, funeral preparations, a new baby, and a lifetime of coping with grief and the loss of our first-born son. But in that moment, I just watched that little butterfly fly away and felt peace in the assurance that my little boy was with his Savior. That Eddie had found his own sweet escape, from all the pain, all the struggling, all the sickness. That he was happy, laughing and joyfully showing Jesus how well he could dance.