Matthew was going to die. With that knowledge came a sense of urgency; the need to tick things off the list of "must dos" before our son would be gone. Granted, the list was indeed small- one doesn't do a lot of planning for the future when that future has been short-circuited.
There was one thing we really wanted, and that was to have our son dedicated to God in front of our church. It wasn't that we believed he would go to hell if he hadn't been presented formally to God before he died; I don't believe in a God who banishes babies and little children away from His presence forever because of a time lag, a lack of a rite or ceremony, or the acts or omissions of a parent. But that's another discussion for another time. No, I believe our sense of urgency for Matthew to be dedicated came more from our own need. We needed God to intervene. We needed a miracle for our little boy, and I wasn't going to mess up any chance we had of receiving that miracle for him. I wanted to have him dedicated, the sooner the better, and I wanted the masses to be praying for him, and for us.
The dedication service was nice. Standing in front of the congregation, friends, and family, were many parents with their little ones, eagerly waiting to present them to the Lord; an act which attested to the fact that these children belonged to God more than to us, and we were surrendering their lives to Him to use however He saw fit. We are temporary caregivers on this earth; entrusted with them for however long He has ordained. Each baby was held by the Pastor and presented to the church. There were a few cries and whimpers from the young parishioners, while others slept soundly, completely unaware of the oohs and aahs, the laughter and smiles from an adoring crowd. We were one of the last ones in line. It had been a battle for me to remain focused on the joy of the other couples, knowing that the moment Pastor presented our little boy, the atmosphere would change. Our turn came, and Pastor gently took a sleepy Matthew from my arms. He was only a couple of weeks old, and he looked tiny to me in Pastor's embrace. As he was presented to the church, there was the usual purrs of verbal adoration, but then he said Matthew needed special prayer. I was choking back tears now. Pastor explained to the congregation how Matthew had a brother, Michael, who was two and healthy, but he also had had a sister, Sarah, who was with the Lord due to Pompe's Disease. He then dropped the bomb which changed the entire atmosphere in the room. Matthew, too, had Pompe's, and without a miracle, this baby would die as well. The place went silent except for the muffled cries from empathizing souls, and the murmurs of other's unbelief that we would have to walk this road again. Prayer was offered up, and war done in the heavenlies on our behalf, but truly, when the service was finished, I was glad it was done. We were exhausted. It was good to go home; back to a place where I wasn't constantly being reminded that my baby was "special", and that God only gave "special" children to "special" parents. I didn't want to be "special"; I wanted a normal, healthy baby, and a normal life like everyone else. It didn't feel like an honor to be have been chosen to raise this little boy, it felt like a curse.
There is a story in the Bible that talks about a man who needed a touch from God- he was paralyzed and needed to be healed. The story goes on to tell of his friends who carried him to the meeting place where Jesus was teaching, and how they lowered the man down on his bed through a hole in the ceiling so he would be right in front of where Jesus was standing. The Bible tells us it was because of the faith of his friends that this man was healed on that day. I needed the same thing in my life; friends who could be full of faith to believe for the life of my child. Sadly, I could not muster any of my own. I had tried before, and it had failed. I couldn't get to the "acceptable level" of faith required to obtain a healing miracle. I marveled at those who did, and wondered what it must feel like to have such a powerful level of belief residing inside a frail, human body. All I knew was when well-intentioned friends told me to have faith, "God will heal him", I smiled as optimistically as I could to show my expected agreement with their words, while inside my heart sank, and I felt more and more unworthy of a miracle because I knew of the huge, overshadowing doubt that flooded my entire being.
I kept a sporadically written journal when we had Matthew. I recently re-read it, and what follows is an entry from when he was still alive.
"I guess I feel that his death is inevitable so I may as well look on to how it's going to be after the fact. I guess that's leading a defeated life spiritually, but that's how I feel. People say you have to have absolute faith and no doubts that God will heal him, but that's how I felt with Sarah, and she died. I'm afraid to be "absolute" again, only to find my baby dead again. A couple of weeks ago in church, a couple came forward with their baby who had been healed of numerous problems. Pastor said that sometimes we need to see evidence of healing and that it really does happen, and how it should be an encouragement to those seeking healing." Ironically, "my initial response was one of disappointment, and the feeling of it hit me as soon as I saw them walk down the aisle. I didn't even have to hear their story, and my mind was saying, 'There's the baby miracle. God healed their baby and not yours. Give up- Matthew's really not going to be healed now.' Yet another part of me says that's not true. God isn't limited to one healing at only one time. I'm on such a see-saw. I feel like I am in a spiritual tug-of-war being pulled between doubt and faith."
A battle had begun inside of me- one side clinging to the hope and teachings that I had heard and believed all of my life, and on the other side, fear and doubt, and a well-hidden and contained emotion- anger. I had told a friend of mine at the time, that "if I could go someplace where no one would hear me, I would scream from the bottom of my toes to the top of my head as long and as loud as I could". But of course I didn't. Good, stoic, Christian girls don't show their anger, especially toward God. It wasn't right to be angry with God. One of my other journal entries reflected what I was experiencing. "I am pulled constantly between two poles- one of deep-seated anger and resentment, and another that knows God works all things for my good, loves me, and walks with me. Yet somehow that isn't good enough. I want my baby to live."
The stage had been set, my mind and spirit the playing field. The war was on.