Writing the piece below has brought back some sad memories, so I am going to start with some happy pictures from what was a great Saturday today. Findley and I took the kids to the mountains of North Alabama for a picnic and to prowl around some old cabins. We had a great time! It always helps me to see the joy that Virginia has now.
Obviously, Eliza is too heavy for Findley or me to carry for long periods of time. Virginia is kind enough to let her ride on her wheelchair to give us a break!
When Virginia was six months old, we were in a particularly dark period. It was becoming increasingly obvious that not only would she have cerebral palsy, but that it would be significant. She was also having a type of seizure called infantile spasms upwards of fifty times a day. It was hard to imagine anyone suffering like Virginia did during that period, and knowing that someone had caused it was unbearable.
Remembering what those seizures were like is incredibly painful. The seizures happened all day long, and Virginia would violently bob her head forward over and over again, sometimes as many as sixteen times in a row. It scared her and there was nothing we could do to stop them; we just held her and cried. Sleep was almost impossible during this time. We were desperate for her to get rest, but the brain's most irritable time (for anyone) is the brief period between wake and sleep. So as much as she needed to rest, there was nothing innocent about our angel falling asleep. That was when the seizures were most likely to occur.
Most children who are diagnosed with infantile spasms never quit having almost constant seizures. They also have some degree of mental retardation. Both of those facts weighed heavily on my mind during this dark period, but in two of the more tangible miracles of Virginia's life, her seizures ceased on day four of the treatment and she has no cognitive deficits. Neither one of those things should have been the case.
There was a several day lag in between when Virginia started having the seizures and when we left to go to Birmingham to start the treatment for them. The ACTH treatment is so dangerous for an infant's body that she had to be hospitalized for the first few days. Once we got home, I had to give her three shots a day of the medicine. A nurse came to our several times a week to make sure Virginia wasn't suffering any of the ominous side effects of the treatment.
The day before we left to go to Children's Hospital and begin the ACTH protocol, a good friend of mine, someone I think is very wise, insisted that I leave the house for a few minutes to get some fresh air. I left Virginia with my mom while my friend and I walked around the block. She told me about two women whom she knew well.
The first woman she told me about had a very similar story to mine- due to gross medical negligence, her fourth son had severe cerebral palsy. According to my friend, she had not carried her burdens well. She was ignoring her other three children, her marriage was in turmoil, and she was filled with anger.
The other woman she told me about had lost her teenage daughter in a car wreck on the way home from a youth group hayride. The very next week, she hosted a pre-prom dinner at her house for her daughter's classmates, including the girl who was driving the car when her daughter was killed.
There was obviously a stark contrast in how these individuals handled the trials in their lives, but the next thing my friend said shocked me. She said that I was becoming bitter and angry. She wanted me to understand that I had a choice about how I responded to the pain in my life.
Time seemed to stand still as I let her words sink in. Honestly, I should have walked back in my house and slammed the door. But I didn't because I was too polite and I had too much respect for her, a smart woman with at least a decade's more life experience than I had.
At the time she said those words to me, I did not have a choice about how to respond to the tragedy in my life. The pain was far too great for me to begin to embrace my suffering. It wasn't my suffering that bothered me anyway- it was sweet Sissy's. Even at that early point, Findley and I realized we would be permanently changed because of what we were going through, but it felt like Virginia was the sacrificial lamb. We felt like nothing we learned, no increase in our faith, could ever outweigh her suffering.
Six years down the road, I certainly see the wisdom in my friend's words. She is right- we do have a choice in how we handle what comes our way. But her timing in delivering that message was off. What I needed at that moment was a shoulder to cry on and a friend who would weep with me. I know now (and I knew then) that she meant well. She could see that a bitter root had been planted in my heart and she was afraid that it would grow with time. She wanted to warn me of where I might be headed.
It takes a long time to get over the shock of tragedy. It was at least three years before Findley and I ever had even one moment that wasn't tainted by Virginia's suffering. Even if we had a minute without her, what had happened to her was all we could think of. Every smiling baby was like a dagger to the soul because it was a reminder of what had been taken from her.
There are times when thinking about those early days feels like getting sucked under by a current of the most painful emotions you can imagine. Just last week when I pulled up the pictures of six week old Sissy eating black bottom pie, Findley and I both had a rough night. Neither one of us anticipated that reaction, but just seeing that picture opened a floodgate of old emotions because that period of time was devastating.
God will use the passage of time to help heal if we allow Him into a situation. Slowly, the pain of Virginia's violent loss has begun to lessen. But it has taken years for that healing to begin and I am sure it will not be completed this side of heaven. My family and friends who have been the most beneficial in that process are the ones who let me grieve, who let me be angry, who let me question prayer and who let me be mad at God. I know I have said some scary things and been in some very hard places, but they trusted that I was God's child and that He would bring me back around in due time. They offered a shoulder to cry on and they helped carry my rage. And then they did the only thing they could do- they prayed for me and they waited on the Lord.
I am a lot like my friend who I went on a walk with that day. I am a "fixer." If you a share a problem with me, I want to come up with a solution. Many women in our Christian circles are like this. Have you seen this counselor, they ask? Have you tried this anti-depressant? Have you tried just getting away, making time for yourself? Have you read this book? We don't like for our friends to suffer and we want to remove their burdens quickly and painlessly.
Unfortunately, there are no quick fixes for true suffering. There is nothing we can say or do to take away the pain of this world. I have learned that there is no such thing as too much compassion for those who are hurting. We need to learn to listen without attempting to interpret each other's response to suffering. When our friends are in the valley of the shadow, we need to weep with them, and then trust that the Lord will carry them through to the other side.
Note: My friend apologized to me several months later. She felt like she had been harsh in her delivery and premature in her timing. Her words were obviously powerful because I have carried them with me all these years, but I did agree with her that they weren't the right thing at the time. Healing is a slow process and we have to trust the timing of the only One who is capable of doing it.