The Roller Coaster

I have never felt worse or more hopeless than I have in the past seven months. Watching Micah have seizure after seizure, day after day, has been and continues to be agonizing. When we heard difficult news after his most recent EEG, I wondered if I could bear it. Is there anything worse than seeing your child suffer and not be able to do anything about it? The fact that I haven't fallen apart completely is a miracle in itself. I have felt the Divine Presence and the prayers of many people as we navigate this road.

There have been times when we have thought one medicine or another was working, only to have the seizures come roaring back. There have been times when we thought we'd have to use his emergency medicine to stop a seemingly never-ending set of seizures. I have been angry, frightened, hopeless. I have cried A LOT. But life goes on.

I have also felt much joy in the past seven months. Micah is a fabulous kid. He loves to play hide-and-seek until he is so excited that he is nearly hysterical with glee. He even waits while we hide, counts to 10 (or thereabouts) and then says, "Ready or not, here I come!" He likes to play with his "yay-go blocks", snuggle with Daddy and Mama, jump on his trampoline, and, most especially, he loves to sing and listen to music (especially Grandpa John playing the organ). His current favorites include anything from The Itsy-Bitsy Spider to Barbara Ann to any song with "Alleluia" in it. Watching him get better and better at communicating, seeing him enjoy life--my heart overflows.

We don't know what the future holds for us or for Micah. My fervent prayer is that his life can be as normal as possible, that he will continue to find joy in relationships, and that we might again see a day without seizures.

I'll try to write updates as we are in the hospital next week (if we have internet access there). We appreciate the many ways you support us.