Emily's Story
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Emotional Issues

Feeling overwhelmed

It felt like it was going to be forever until Emily's birth. At least at first. My experience was that the first two weeks completely dragged. Then I got into the swing of things, and the next few months sped far too quickly. Entire weeks would zip by. It's kind of odd, but they're months that pass altogether too quickly and too slowly at the same time. So although I know you're already committed to hang in there, I'll say it anyhow. Hang in there. It'll get easier before it gets harder.


There are web sites and books that give a very good in-depth discussion of grieving, the stages of grief, and a rough-and-ready timetable. I found they didn't apply very well to me.

The truth is, we start grieving from the moment we get the diagnosis. Initially there will be shock and numbness, and so on. But because we haven't suffered the loss yet, something else happens. We get a chance to answer all the questions that plague the bereaved ("Why?" "Is this my fault?" "How could God do such a thing?") long before we are actually "bereaved". There isn't the shock and hysteria that would accompany a more sudden loss. In a way, I found it kinder that there was no hope for Emily. I would have hung onto the hope until her last breath--in fact, I did that anyhow. But I wouldn't have prepared for her death until it happened.

It's perfectly acceptable to prepare for your child's death in advance. In the section on funerals, I'll discuss why it's almost essential. For now, suffice it to say that preparing for the worst won't cause the worst to happen.

Hating the Pregnancy

For a few days, I hated my pregnant body. I cringed every time Emily kicked. I didn't want to show. I desperately wanted to go into preterm labor just so it would be all over with. I've since discovered that this is a normal reaction and that most women I've asked say they felt the same. We all want a way out of the pain, a way that's morally acceptable but also quick and easy. Nobody wants to drag out suffering. For me, once I settled down to the reality that there was no way out, I let go of my search for the "easy way" and felt that any time remaining with Emily was a gift. Then I began to bond with her however I could in whatever time we were granted, and I stopped hating the pregnancy. In fact, when it seemed as if I really was going into preterm labor, I took measures to stop it, and I was tremendously relieved when they worked. When we finally set the date for Emily's induction at 42.5 weeks, I felt incredibly sad that her time inside, where she was safe, would be ending so soon. Other women tell me they felt the same. So trust me, this will pass.


I haven't heard this reaction discussed, although CS Lewis begins A Grief Observed by saying how surprised he was that grief felt like fear. In my case, I began feeling afraid of everything. Right in the doctor's office after getting Emily's diagnosis, I was afraid that something would happen to my three-year-old son. Afterward, dozens of old fears resurfaced, and it peaked in the month after Emily's death. Scenarios I hadn't feared since childhood began returning to my mind. For example, I'd be driving and feel a terror that the car's doors would blow open. Or I'd be afraid the house would suddenly burn down. Or that the fan blade would suddenly spin off the fan and sail through the room.

They say the difference between a neurosis and a psychosis is that a neurosis makes you miserable and a psychosis makes everyone else miserable. I tried to keep my fears neurotic, not forcing others to do or not do things based on what I was afraid would happen. And I always had to take a deep breath and analyze how likely it was. Quite often, it was only a result of the stress. And the doors never did blow open on the car.


No one can stop you from feeling sad--nor, in my opinion, should anyone try. You're about to suffer a loss that will cut into your heart and change who you are for the rest of your life. If you didn't feel sad, people would wonder. But depression is more than being sad, and as someone who's faced depression before, I know it's not always in our control. Some parents have found help in antidepressants because that took away enough of the depression that they could process their grief; others felt it wouldn't help because it would merely numb them to the grieving they needed to be doing. This is a personal choice, and you need to discuss it with your doctor or midwife if depression is an issue.

With or without medication, there are five things you absolutely must do to stave off mild depression. They sound very simple, and odds are that you're doing them anyhow if you're pregnant and even more if you have other children or employment outside the home. But here they are:
-Get a shower every day.
-Get dressed every day.
-Get out of the house every day, even if it's only to walk around the block.
-Eat regular meals every day.
-Avoid sugar and alcohol.

Yes, that's very simple. No one's going to write a blockbuster bestseller based on my little list. But I found that whenever I've been depressed, it's helped if I made a point of doing all five of these things every day as a means of feeling better. For some reason, calling it a program makes it more justifiable. For example, depressed people, especially depressed women, don't always feel they're "worth" a balanced meal. So don't eat because you feel hungry. Eat because it's part of your regimen and someone told you it would help.

If there are any other tactics you find eliminate depression, add them to the program. I found that flossing regularly will lessen a bout with the blues. Why? I have no idea. It's probably all in my head (and not just because my teeth are in my head!) but since the only side effect is healthier teeth and gums, I go with it.

But, and this is very important, if you ever start feeling self-destructive or incapable of ordinary daily functioning, don't just get a well-balanced meal. Call your doctor.

"Acting Pregnant"

Giving up alcohol, junk food, medication, coffee,'s assumed that every pregnant woman will live a life of virtue and natural healthfulness for nine months. Ice-cream jokes aside, you're "supposed" to eat better while pregnant than you will for the rest of your life. If you slip up, there's that guilt that somehow you're cheating the baby of the best possible start in life. It doesn't help that the authors of some books take it upon themselves to become the nutrition police, asking "Is this bite of food the best possible bite I can give my baby?"

Even before we got Emily's diagnosis, I'd sometimes pick up the candy and say seriously, "Honey, is this the best possible M&M I could give my baby?" But afterward, it seemed so unfair that I had to give up some of the only comforting things in my life for a baby who wouldn't reap the benefits. What hurt worst was giving up coffee. But why couldn't I just have a beer and say it wouldn't matter, that it certainly couldn't hurt her brain development at this point?

Because that would have been giving up. That's what I told myself over and over. I was carrying her to term because I wanted her to have the fullest and best possible life she could have. I had to give her whatever I'd give my other children, just out of fairness. To me, that meant continuing to eat healthy, not taking any medications, taking the prenatal vitamins, and so on. This is not a moral issue. Relaxing on all the pregnancy-standards is something you'll have to decide for yourself, and no one will take you to task for it. But I found my disposition was much improved when I continued to "act pregnant" and be on my best behavior. There wasn't much I could give Emily during her time with us. But maybe I could give her good nutrition and make sure her birth wouldn't be accompanied by a caffeine-withdrawal headache.


Guilt. It's insidious, isn't it? If we felt guilt for the things that actually caused our children's disorders, these are the things we would be saying:
-There shouldn't have been those weird chemicals in the environment...
-It's my fault the chromosomes divided improperly...
-I can't believe I didn't do more to close her neural tube...

It sounds kind of silly when put that way. Instead, what I've heard were parents saying these things:
-I wish I hadn't polished my nails.
-It must have happened because I'm a bad mother.
-God is punishing me because I did something immoral when I was seventeen.

A lot of times, we feel guilt that doesn't help us. My stepfather tells me the only thing we need to feel guilty for is sin, and I think he has a point. Guilt is useful if it causes us to right a wrong. By the time we need to be visiting this web site, the problem can't be righted any longer, and I doubt any parent deliberately caused his or her child's birth defect.

I've been told that guilt is our way of taking control over a situation we can't control. I know I thought that if only I could find a way I was responsible for my daughter's birth defect, then I could completely eliminate the risk of it happening again. We can resolve to be more careful about possible teratogens in the future. What we can't do is change accidental exposures or take ourselves back in time and make the chromosomes line up correctly. It's easy to say not to beat ourselves up over our children's problems, difficult to do. Our children rely on us for everything, and we couldn't even give them life. But in this case, we have to let go of our idealized self-image as the perfect, all-powerful parent.


Arguably, parents in our position should feel enraged. There all manner of people who have polluted our environment to make an extra dollar and people who hide the worst chemicals in foods because it makes them more colorful...there's the spouse who wanted to have the baby even though you didn't (or didn't want to have the baby and wasn't enthusiastic enough)...there are the medical staff who aren't very forthright or gentle about giving us the answers we need...and there's God who we all know was perfectly capable of giving us a healthy baby. There's also ourselves to get mad at, but that's really a more vibrant form of guilt and it leads to depression--not a good combination at all.

Anger is perfectly understandable in this situation. But I'm not sure it's very helpful. I have no quick tips for this one. All I could do was tell myself that right now I needed to be concentrating my energies on my baby and all the planning and bonding I'd have to squeeze into the remainder of the pregnancy. It's not that much time.


It got worse after Emily's death: I couldn't remember things. I walked around in a fog. For one entire week my husband asked every day if I could go pick up the dry cleaning.
Him: Can you go get the dry cleaning?
Me: Okay.

That night:
Him: Did you get the dry cleaning?
Me: Oh. No. Sorry.
Him: That's okay.
Me: I'll get it tomorrow.

Next morning:
Him: Could you get the dry cleaning today?
Me: Okay.

That night:
Me: Oh. I'm sorry...
Eventually what I had to do was (at my own request) have my spousal unit make up a list for me in the morning before he went to work. Later I took over list-making duties. But it helped me tremendously, and I pass it along in case anyone else is feeling the same confusion.

One day my husband came home from work to find me sitting at the table writing thank-you notes for the funeral. After a little while he came into the kitchen and scanned it hopefully. I looked up, had one of those "moments of inspiration" and then took my list and wrote carefully, "Take out something for dinner." My husband said, "So, fast food tonight, huh?"

Gallows Humor

This was how I coped. My husband and I have a similar sense of humor, but I get very dark, biting, and sarcastic under stress. I said some very rude things that happened to be funny. This was how we coped. If you find yourself coping in this fashion, that's fine. But keep in mind how others will respond: they won't be sure whether to laugh or scream. They might tell you not to say such things. It's fine to try to get a dark laugh or two out of the worst thing you can imagine happening in your life--but screen the company in which you do it!

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