Sunday, September 28, 2008


And out of the ground the Lord God formed every beast of the field, and every fowl of the air; and brought them unto Adam to see what he would call them: and whatsoever Adam called every living creature, that was the name thereof.
~Genesis 2:19

It is our human nature to want to have a name for things. We use words to put meaning to everything.

By what power, or by what name, have ye done this?
~Acts 4: 7

And by naming, we have power.

When Dominic was dying, we didn't know why. We were powerless in so many ways. Then a doctor had an inspiration. Dominic had Infant Botulism. We had a name.

I searched and learned all I could about Infant Botulism. I studied and shared what I learned, hoping to inform the world that this named killer was out there, and that we needed to protect our little ones from it. I didn't have power to save Dominic, but maybe I had the power to keep other families from having the heartache.

For six years, we had that power. Then Bridget was dying, and we didn't know why. And then, all over again, Dominic had died and we didn't know why. We were powerless in ever so many more ways. This time, no inspiration came. In desperation we asked and searched for a name. But what killed Bridget, and Dominic-- nameless.

In a recent conversation I explained that I believe God gave Adam the power to name all living creatures to give man power and dominion over them. As a child comes into the world, parents name the child to give those parents power and dominion. Of course, with this comes the stewardship and responsibility. But having the power to name is sacred.

Scripturally, men and women of the world are given new names when they are called of God. Why? Because it is the transfer of that being from being ruled by the flesh to becoming servants of God. Abram became Abraham, and Sarai became Sarah. Saul became Paul.

In that conversation, I lamented that we don't have a name for what caused Dominic and Bridget's deaths. We watch as our newborn exhibits similar symptoms. Our preschool child also has concerning characteristics that we wonder, is this caused by the same thing? And without a name we are left powerless. With a name, we would have power and dominion over it, but without a name it has power and dominion over us.

Perhaps those who have a name would argue that it makes no difference. But I envy what I do not have. I not only envy other mothers who never were touched by the sting of death, but I also envy those mothers who can say their child died from heart failure, cancer, etc. I envy those mothers whose child faces medical challenges, but with a name, a course of action can be planned. Though there may still be uncertainty in the process, there is also something in the sense of knowing that gives stability to the difficulties. I resent that I had a name of what took Dominic, and now when I am left without answers for Bridget, I was also robbed of the power to know what took Dominic from us, too.

In response to my lamenting, I was asked, "Have you thought about naming it?" I have thought a lot about that question. My initial response was something about not wanting to give it the wrong name. That I could easily call him "woman", but that would not be useful because the correct name would be "man".

I've thought about my reply and how maybe I was wrong, because even though the name for Dominic's cause of death was perhaps inaccurate, it had a certain satisfaction in being able to face it and accept it. And yet, how much more upsetting it has been that these many years later all that we believed was quickly taken away from us. Making me feel so foolish. A deceptive distraction, keeping me from being more closely on the lookout to protect our other children. Letting me be ignorant enough to think that maybe it would be safe to have more.

I search and search and hope for an answer to what it is that did this to my family. To find a way to keep it at bay from the rest of us. A prayer recently offered in behalf of my family used the word "shed". To shed whatever this unnamed thing is from us, so that we might be healthy. Especially our littlest one. And because I have no name, I have to hope that God is truly omnipotent. That knowing all things, he can understand what it is we are asking to be protected from, even if we have no name. And though this is the ultimate prayer, that we will be spared from being affected any more by this unnamed killer, there is more that we need from the power of naming it.

I will continue to hope, to pray, to search for that name. To have revealed what it is that made my little ones so susceptible. That took them so quickly away from us, and that may threaten the rest of us. If to only have a name, to know by what power it had been done. And then to be done with it.

1 comment:

MelissaLoss said...

I know it is very hard to have to deal with an illness with no name. My children have one though not fatal still very concerning. I noticed in my 2nd born that he had delays but didn't think much of it but when my third son started showing the same symptoms I started to worry. We found the cause of these delays but there is no name for it not enough research to know how this will effect them when they are older and that scares me. They have an extra 8 chromosome we have to get our 3 month old tested for it and we are hoping we can get him treatment before the delays have a chance to be noticeable. So I some what understand how you feel but could never completely. I am so sorry for the loss of your little ones and what Sarai is going through now I hope you fined that name you are looking for and they can find a treatment before it is to late. Please know I pray for you and your family daily and admire you for you strength and grace through all you have gone through. I lost a child to. To an illness with no name or any thing I can find known about it. I was only 18 weeks pregnant but she was my only little girl. I hope to hear good news about Sarai soon. Sorry if I bothered you I just think you are so inspiring and your story is so heart breaking I wanted to let you know I am here if ever you need to talk. I am a firecracker mom to BTW.