The skies were gray. It was ironic how they matched the cloud that seemed to envelop me as we drove away from the hospital that day. Rob and I said very little, both of us trying to absorb the news we had just been given. Struggling to contain the sobs that convulsed within me, I choked out the words, "I don't want her to die". "I know", he said. "I don't want her to either". We both knew that all our wishes and hopes for her to live didn't matter. There was no hope; nothing could be done to save our daughter.
Yet there was one thing which could be done; we could pray and enlist God's help. We had dedicated Sarah to God when she was just a few weeks old. Her life was His. After all, He was the One who created her, and she belonged to Him more than she belonged to us. He knew of her condition, and He knew how much we loved her and wanted her to be healthy. Surely He would help us. If He was the loving and benevolent God I had come to know as my friend, then surely this child deserved His miraculous touch, and so did we, since we were good people who served Him. We drove to church, and after announcing to the receptionist that we'd just been told our baby was going to die, we immediately obtained an audience with one of our Pastors. He spent some time talking with us, trying to bring a sense of calm and peace to our devastated hearts, and of course prayed for her to be healed. The whole scenario seemed to be anti-climactic...where was the thunder? Where was the smoke, the power, the mighty act of God that was going to heal my baby girl right now? Why, at the very least, were people not falling on the floor sobbing and acting distraught, the way I felt inside, but could not express. We were grateful for the prayer, but remained numb. Shell-shocked, we drove home.
An hour or so later we received a call from our Senior Pastor. Since it was Wednesday, there was a church service that night and he asked us to come and bring Sarah so the church as a whole could pray for her. As much as our physical bodies longed to be home, exhausted from the day's events, we agreed.
We sat in the front pew and tried our best to sing along with the joyful songs being sung. Tears kept pushing to be released, and I fought harder and harder to contain them. Stoicism was a strong character trait in my family; I learned it well. As the service progressed, I became more weary and just wanted to go home. I'm sure my occasional eye contact with the Pastor reflected my pleading heart which just wanted it to be over. It felt like torture waiting. At last he called us forward. He briefly shared with the congregation the news that we had just hours earlier received, and asked for the church to agree with him in prayer. Several members came and surrounded us as they prayed, and we could actually hear the sobs and soft cries of several people. I was touched by their ability to so readily release those tears for someone else, all the while I continued to stuff mine as hard, and as far down, as I could. When the service ended, and we were surrounded by many who hugged and loved on us, and were eager to do anything they could to help us, yet I was struck by the fact that they all got to go home and not live this nightmare, and I did. There was no escape.
Somehow we needed to go on with life, knowing that every day could be her last; that every time we went to get her from a nap she could be dead; and probably the hardest to assimilate was the knowledge that due to the nature of her disease, every time we fed her, we were essentially killing her. The guilt, although mostly subconscious, began to weave it's evil tentacles into my brain.