Tuesday, May 26, 2009

"Don't do it. Don't say it"

I haven't hid anything from my eldest son Conrad, who is only five years old, regarding Fisher. He knows all about Fisher's diagnosis. I told him about it because he has exceptional hearing when I'm talking to my friends. Even if I were trying to hide information from him, he'd catch it. (It's funny his hearing isn't as clear when I'm asking him to do his chores.)

Conrad's initial response was surprise. He didn't know anything like that could occur. Truth be told, neither did I. But, he seemed to accept the news better than I did. However, when he finally did start hearing me tell others about Fisher, he responded more negatively. When the subject of the baby came up he would stop me and say, "Don't do it. Don't say it". At first I thought it was because he didn't want other people to know about Fisher. I couldn't have been more wrong.

When I finally asked Conrad why he always tells me not to say anything, I was surprised to learn he was bothered by my response. I cry when I tell people about Fisher's condition. He doesn't like to see his mommy cry.

I have stopped telling everyone who asks about the baby in my belly about his anencephaly. Not because of Conrad's request, but because it isn't Fisher. While it's true he has anencephaly, he is much more than that. At this point I don't know all about him. I'm curious to know him as more than his diagnosis. I know he is an energetic little guy. He has a clear schedule of activity and inactivity just like other babies. And, even though we haven't even set our eyes on him yet, he's managed to do his part to bring his parents closer to God. That's some special little guy. I'm glad he's ours.

Tuesday, May 12, 2009

Denial Days

It's been a week since I learned of Fisher's condition. Looking back on the last week, I realize how much I didn't want to believe in his diagnosis. I purposely scheduled denial days so I wouldn't have to face the future. Thursday was the best of them all. I took the boys to the beach to escape from my thoughts. A friend who didn't know of our sad news came along with her son.

We arrived at Queen's Beach to find plenty of distraction. There was a Hawaiian monk seal sleeping on the sand. I had never seen one of these rare creatures in the wild before (if you can call Waikiki the wild). Nearby there was a group of people congregating around a couple of beach boys who were throwing food to fish. The beach boys gave our little guys some bread to toss to the fish. When they were done, I invited Donovan to come get a closer look at the seal. The seal was surrounded by a barrier to keep people away. When I came to it, I called to Donovan to come see the seal's flippers. I was immediately shushed as if I had disturbed the other patrons in the library. I was told the seal was sleeping and had very good hearing. I thought it was hilarious at the time.

Shush! That's what I had told myself when I decided to take denial days. Yes, they were fun and I honestly think I needed the distractions they brought me. However, when I did remember and tears began to well up I wouldn't let them fall. Instead, I conveniently stored them in my neck and shoulders and put on a happy face. By the end of the first few days, the physical pain was too strong to ignore. I had to let myself cry, I had to let myself grieve. But how? How do you tell the world you have sad news? When people come up to me and pat my bulging belly, they are thinking happy thoughts. Who am I to put a damper in their day? It's too difficult for me to think about. Like Scarlet, "I'll think about it tomorrow". Maybe it is time for another denial day.

Monday, May 11, 2009

Naming Baby

He is real. He is alive. I feel him wiggle inside me several times a day. He deserves a name. He is Fisher Seiji. Fisher means, well, fisherman or one who fishes. Seiji is a Japanese name which is pronounced Say-jee. The first syllable means mind, body. The second syllable means govern, heal, peace.


Somehow I knew from the beginning. I had a very strong impression even before I conceived that something was wrong with this baby. Because of this baby, my little family has come to a detour on our journey together and we are not retreating. I hope and pray we will become better people for it.

The Diagnosis

On Tuesday of last week I went to the doctor's office for a routine five month ultrasound. I went by myself. My doctor checked and measured baby's body parts. Everything was fine until he came to baby's head. For some reason, it just didn't look right to him. I was sent to a perinatologist who confirmed my doctor's suspicions. Everything was perfect about our baby's body from his toes to his nose. However, he suffers from a lethal condition called anencephaly. The crown of his head is malformed and is missing a life-sustaining brain. If he does make it to term he may be stillborn or he may live a few minutes or days.