The Po Show

No Words

It's every mother's worst nightmare, what Dawn is going through. And it sounds so trite of me to say that.

But what can you say? What can you say *to* a woman whose baby girl is dying? Everyone keeps repeating the same old phrases: "I'm praying for you." "I'm so sorry." "My heart is breaking for you." "Please let me know if there's anything I can do to help." "My thoughts are with you."

This is a woman I know from a closed forum, of which I'm a member. We originally were all on a big forum for people who are more or less addicted to Gymboree (I was there checking out what people were excited about with regard to Gymboree, for ebay selling purposes). Then there were the usual cyber-splits and this is one of the groups that resulted from various shake-outs. Now it's not really about Gymboree anymore, and more just a bunch of cyber friends.

Her baby girl was born back in September, and was healthy and happy. She slept well, ate well, developed beautifully. Then around four months, she stopped sleeping well, stopped eating well, and stopped growing. The parents were a bit concerned, but as everyone knows, babies develop at different rates. At five months, she was fussy all the time, and started to lose developmental progress (stopped swatting at toys, didn't put her hands together). And she was still losing weight. The ped couldn't find anything wrong. At her six month well baby, he was concerned enough to send them to specialists, who did an MRI. Everything was clear. They started doing blood tests and slews of other tests. They started to suspect some type of lysosomal storage defect, many of which can be taken care of with vitamins or other fairly simple therapies.

Everyone kept reassuring the mom that everything would be fine. She tried to remain optimistic. I mean, how many babies really end up having a truly serious illness? Surely some specialist would be able to help them. We live in an age in which we expect that there will be a pill, a therapy, a surgery, something medical that will improve, if not eradicate, any physical problem.

But that's not always true. The final diagnosis was a rare, degenerative genetic disorder that impairs the development of myelin around nerve fibers, leading to severe motor and cognitive impairment. There is no cure. Babies with this disorder generally die before they are two. The family was told that a bone marrow transplant would hurt more than the possibility that it would help. The doctors put in a feeding tube and have sent them home.

So what do you do, once home? You think you should cherish the time with your baby that you have left, but how do you do that? When adults know they are going to die, they try to wrap up their affairs, they travel, they try to make peace with themselves and others. This baby doesn't know what is happening to her, just that a lot of things hurt now, and that people are sad around her. She doesn't want to go to Paris or buy a sports car. Her parents can't make her feel better by taking her to Disneyland. They have no idea how many days or weeks or months are left.

And they have a two year old little boy, who was thrilled to be a big brother. How do explain all this to HIM? How can you make a two year old understand why everyone is crying, and why Mommy and Daddy and Kinney keep having to leave for days on end. How do you say to your little boy that you have to spend all your time with the baby, because she's not going to be around much longer?

Humans just don't have the capacity, I think, to find words for any of this. And looking in from the outside, I'm trying to find words, narrative and internal, but it's just more helplessness. For the parents of this little girl, words are the last things to worry about.