The day Sarah had been diagnosed was the day before Thanksgiving. In spite of the fact that we didn't feel like we had much to be thankful for, we packed up and went to family as usual, to eat tons of food, and to enjoy each others company. The food was plenteous, and the laughter much, as this family knows how to cook and eat, and they know equally well how to enjoy each others company.
I mostly remember feeling separate, as if somehow a transparent bubble kept us from totally being involved in that day. We were different now....and the way we were interacted with was different too. There was a distancing, a denial of sorts or perhaps a fear, I suppose, on everyone's part. If it wasn't talked about, maybe it wouldn't be true, or perhaps it was more a matter of not knowing what to say, or how to react to us for fear we might feel worse than we already did. I know there was much love for us around the table that Thanksgiving day. Words could not be found to express the sadness and despair all must have felt in that moment. More pictures than normal were taken; pictures of Sarah alone, and pictures of the three of us together. Pictures you know would not have been taken had there not been the full knowledge that this would likely be her only Thanksgiving.
Living with the knowledge that your child is going to die changes your thought patterns. People in the grocery store commenting on how cute your baby is, is met with the usual gratuitous "thank you", while inside, your mind is saying, "yes, she is. Do you know she's dying? Do you know I won't have her long? Can you see I am hurting?" Of course they don't know any of those things, and I kept them safely tucked inside so no one could see that I was not as strong as I believed I should be.
We know that our children are a gift from God; they are more His than ours...loaned to us for a period of time on this earth. I cannot tell you how many times I heard those words..."she's more God's than yours". While it was in fact true, after a while it began to anger me. She was MINE. I loved her, and I wanted her. She wasn't an "accident", and she wasn't born into a family where she was just another mouth to feed. She was my only child, and she was desperately loved and wanted. God gave her to me, so she was mine. God wasn't someone who gave gifts and then took them back, was He?
There were multiple, well-intentioned words spoken to us for which we were grateful, but others, while well-intended, were very hard, and brought more pain. We were told that our daughter was dying because of "sin in our lives". Wow...how do you get around that one? Doesn't everyone have sin in their lives? Why was our sin so much worse than everyone else's that we deserved to have our child die? Or, how do we get rid of this sin, make restitution, and make it so she doesn't have to die? Again, the guilt started to weave its way in. If it's my sin, then it's my fault that she's dying.
Surprisingly, the one statement that brought me the most difficulty, the one that I had to battle with the longest and hardest against was spoken by some very wonderful people who have a heart for God and others. I know in my heart of hearts that their intention was well-meant, but it brought devastation to me.
"If you have enough faith, she will be healed." Simple enough. I prayed more, I fasted more, I surrendered her to God more; I did everything I possibly could to increase my faith so she could live. Surely, as a "good little girl" who grew up loving and serving God, my faith in Him had to be strong enough to grant me the life of my child. I held onto that hope, but realized that if I didn't get my faith to a certain God-acceptable level, whatever that may be, my baby would die, and again, it would be my fault.
Day after day passed by as we tried to live "normal" lives. We couldn't bear to find a babysitter...who wants to watch a baby knowing she could die under your care? Rob and Grandma became our primary babysitters. Rob's nights were short. He worked, came home, slept a couple hours, then got up to watch Sarah while I went to work. Day in, day out our routine continued.
Sarah looked as normal as any other baby except she was weaker. Developmentally behind, she didn't roll over, and she was too weak to sit up unsupported. She had these huge dark eyes that enchanted you from the first glance, and a smile that warmed your heart the minute you saw it. Most people would never have guessed she was sick, much less dying.
I remember an analogy we were told by our Pastor regarding death. He said that our bodies and spirits are like our hand wearing a glove. Our hand represents our spirit, and our body, the glove. When death comes, it is as if we are taking off the glove. Our hand, which has always been the same, just encased with the outer covering, is now free from it's cloak; unchanged, just as it always was. In death, our spirits, that which makes "us" "us", is set free from our bodies. It made sense to me. Even in death we go on; our spirits free. Who we really are is not our body, it's what's housed IN our bodies.
One day as I sat and fed Sarah, she looked at me with those big, expressive eyes, and it was as if she wanted me to know her time was short. I looked at her and asked, "Are you shaking off your body?" It was an instinctive thing; a preparatory foreknowing of sorts. It was one of those moments when you know something just transpired, but then you go on as usual.
We lived each day as normally and as best we could, still hoping for an escape from the sentence of death we had been handed, believing with all our faith that this horrible thing wouldn't happen; but then the fateful day came.