Today would have been my daughter’s 18th birthday.  Not the little one who keeps me on my toes but my first born daughter, Abby Annette.

I was going to write a post like this last year but my son totaled my car four hours after getting his drivers license and I ended up posting about that. You can read it here if you want.

Abby Annette was diagnosed with spina bifida and anencephaly about a week before she was born. She never had a chance.

I had been experiencing contractions that were strong enough to bring me to the hospital but like a car that makes a noise until you bring it to the mechanic they stopped as soon as I got to the hospital. After the third trip down there and seeing how big I was the doctor decided to do an ultrasound.

Because I had been down to the hospital so many times, and it was getting to be routine, I sent my husband off to his meeting. I could tell something was wrong by the look on my doctor’s face but he wanted to wait until my husband returned. I’m sure you all know I wasn’t going to stand for that.

I heard the words and the explanation and I understood that my daughter was going to die. I however, was not going to cry at that moment. I would later but I knew if I let go I wouldn’t be able to stop. I bit my lip and started singing a song in my head. A song we must have heard on the way down to the hospital. Justified and Ancient by KLF featuring Tammy Wynette of all things. I didn’t like the song and I could only remember the chorus, and I didn’t quite “get” the lyrics. In fact to this day I have no idea what the song is about. All I know is that it distracted me enough to keep me from losing it.

All bound for Mu Mu Land
All bound for Mu Mu Land
(hey)
(hey hey)
All bound for Mu Mu Land (justified)
(hey hey)
All bound for Mu Mu Land

I thought it was Moo Moo Land. Which struck me as somewhat amusing.

When my husband arrived I told him what was happening. The doctor came in and told us that for now the contractions had stopped but due to the circumstances they wouldn’t try to stop them. They told me I could go into labor at any time. I asked if I could drink and they said yes.

On the way home I made my husband stop at the gas station to pick up a pack of cigarettes for me, then I made him stop at the liquor store.

When we got home we started making phone calls. I made one call. I called my father and told him what was going on. We lived next door to my parents, if I made the call in my kitchen and my father picked up in the kitchen I could see him. I told him what the doctors had told me, that the baby had spina bifida and anencephaly and that she would most likely die within minutes of birth.

My father was a doctor. He questioned me about the diagnosis. He wanted to make sure they had said anencephaly rather than hydrocephaly. Hydrocephaly is an abnormal buildup of cerebrospinal fluid in the ventricles of the brain, it is a common companion of spina bifida but it is treatable and the baby can live. With anencephaly the child is born without a forebrain and can not live. I explained that I had not gotten the diagnosis wrong.

That was the first time I had ever heard my father use the word “fuck”.

I asked my father to make the calls to the rest of the family. I didn’t have it in me to explain to everyone. I also asked him to tell my mother even though he suggested I do it. I couldn’t deal with her at that moment. My mother had short term memory loss as well as other brain damage from a stroke when she was 29. I couldn’t tell her the sad news and then tell her again and again and then comfort her for not being able to comfort me.

About ten minutes after hanging up with my father my brother called me. He didn’t say much, just that it sucked and then we sat there on the phone for about 15 minutes not saying anything. There was just nothing to say but it was comforting to not say anything with him.

The next night my brother stopped by with a lasagna and his daughter. My husband was the gate keeper and tried to keep them out. His heart was in the right place, he thought seeing my niece, who was only a year old at that time, might upset me. My brother wasn’t having any of it and forced his way in the house. My niece ran into my arms and though I did cry a little it was because she was such a wonderful sight to see. My niece and I had bonded from the moment she was born, I was the first person besides her parents to hold her. I was her aunt Nenny. Seeing her was and always is one of the best things in the world. They didn’t stay long but wanted to stop by to say hi. My brother mentioned that my sister in law was going to stop by a little later.

When my sister in law arrived we sat in the kitchen and smoked and drank. We cried too. I was playing a waiting game and drinking was probably not the best thing considering it relaxed me which prevented me from going into labor. I am forever thankful to my sister in law for sitting with me night after night. She had a family to care for, she had work, she had a life to get to but she spent each night of that week with me.

After a week and no contractions the doctor decided to induce labor. He started my on Pitocin. A lovely drug that makes your uterus contract. At the rate they were giving it to me they anticipated I would go into labor in about three days. Three days would have brought us to March 25th which happened to be my husband’s birthday. I suggested we wait a day or two to start the whole Pitocin routine but my husband said he didn’t mind if everything happened on his birthday. He was not convinced that it would necessarily happen on schedule.

The doctors and nurses had briefed us on how the delivery would most likely happen. If the baby was born alive they would do everything to make her comfortable but the general consensus was that she couldn’t feel anything. They said she wouldn’t be able to live more than a minute or two beyond birth.

The baby had been active the whole time. I could feel her kicking and hiccuping up until the night before I went into labor. I was sitting in my kitchen by myself. I hadn’t felt any kicks for an hour at least. I tried to make her move by pushing on my stomach, something that had always worked before, but it didn’t work this time. I knew she had died. I didn’t tell my husband. I don’t think he was home, but I am not sure at this point. I just didn’t.

The next morning we went into the hospital for another dose of medication and the doctor decided to hurry things up just a bit more by inserting seaweed sticks into my cervix. Apparently the sticks then expand and dilate the cervix causing labor to begin. I’m not entirely sure how they work because as he was inserting them he broke my water. Because of the birth defects I was carrying a lot of extra fluid. As bad as things were at that moment it felt wonderful to get rid of some of the pressure I was feeling.

I was in active labor for no more than half an hour. There were no monitors wrapped around my belly. The whole room was incredibly quiet. After she was born the nurse cleaned her up and took her foot prints. I was checked to make sure everything was okay. At some point the priest from our church came in the room. I wasn’t fully there. I was in Mu Mu Land. Trying to hold it together so I could get out of the maternity ward and go home.

Shortly after a nurse came in and dressed Abby Annette in an outfit with yellow bunnies on it and some booties that had been knit by someone who hung out at the hospital or something like that. I couldn’t understand why she was dressing her up until she pulled out the camera. She posed the baby with toys, in my arms with my husband standing beside me and in several other positions. It was surreal. I didn’t want pictures. The nurse said maybe not now, but one day I might. She took four or five Polaroids and two rolls of film.

I didn’t want pictures. At that moment I just wanted to move on. In my minds eye my daughter was an adorable little redheaded girl. In reality she was not. She had many birth defects that are probably part of the whole neural tube defect. Her spine had not closed, she had very long limbs but this was an optical illusion due to the fact that her head didn’t exist beyond her face.  She had what the nurse called a cleft pallet. In reality she had two mouths. I kept laughing because the phrase a face only a mother could love kept running through my head.

And I did love her. I knew her as only a mother could. I had already planned her life out. She would be smart, funny, beautiful. She would grow up to do the things that she had a passion for. She wouldn’t settle for anything less.

We tried to donate her organs but they were too deformed to be of any use.  After making arrangements with the funeral director we were allowed to go home. Because the hospital was expanding the regular entrance was closed. To get out we had to walk through the children’s hospital, the cancer ward. As bad as things were at that moment I knew they worse for someone else.

The next week, hell, the next month, was a blur. We made all the appropriate arrangements. I received flowers and cards from friends and family and from people I didn’t even know. I received one of the nicest and most heartfelt cards from the cashier at our neighborhood grocery store. The kindness of people never ceases to amaze me.

I held it together for the most part. I was busy making arrangements, canceling my baby shower and just trying to get through each day without screaming at any pregnant women or moms walking down the street with baby strollers. I probably could have used a little therapy at that time.

My husband and I decided to bury Abby Annette in the cemetery where his mother was buried. This was one of the few things that made me happy. I had never met my husbands mother, she died when he was 15, but it gave me great comfort to know that my daughter would be with her grandmother. She couldn’t be buried next to her, she had to be buried in the childrens section of the cemetery but it was close enough. As a mother I felt as if I had let her down. I wasn’t sure what I believed as far as an after life but I felt horrible that I wasn’t there with her to take care of her. I didn’t want to die but I didn’t know how to be her mother given the circumstances. Having her grandmother there helped a lot.

My husband and I didn’t talk about any of this. Our marriage was already ending I just refused to see it. I had held it together pretty well I thought. I knew I would eventually have myself a good cry, maybe for a couple of days, but I wanted to get through all the ceremony first. I didn’t want to make anyone more uncomfortable around me.

We had a small funeral, just immediate family. I don’t recall what the priest said, I wasn’t really listening. I was just singing the Mu Mu song to myself. When my sister in law saw the casket, the tiny little casket, she lost it and started crying. This set me off and suddenly we were both bawling our eyes out. Something my stoic family just didn’t do. Of course it set all the women off who were in attendance.

I don’t remember much that followed the funeral. Life returned to normal for everyone else but me it seemed. I didn’t know what to do with myself. I had quit work in anticipation of being a mom. I could have gone back to work but that didn’t seem like something I was ready to do. I decided to get pregnant again. My husband wanted to wait but I wasn’t going to not be a mother for long if I could help it.

He didn’t understand. When mother’s day rolled around a couple of months later he didn’t get why I was so mad at him for not making any kind of deal about it.

“But you aren’t a mother” was his defense.

I’m pretty sure I was. I gave birth to a child, I named her, I buried her. That makes me a mother in my book. He didn’t understand and really wanted to wait but when we had to put down my dog only a few weeks later I think he knew, as I did, that having another child just might save my life. And it did.

My son was born less than a year later.

If you are still with me I’m wrapping it up.

Like the bag I have of all the cards I received and the rolls of film I never developed I never know where to put her in my life. When people ask me how many children I have, I tell them two. I don’t mention Abby Annette because for the most part it isn’t something I want to explain. It makes people uncomfortable and it makes them sad for me. When I get to know people better I have no problem telling them, it just isn’t something for acquaintances.

There isn’t a day that goes by that I don’t think about my first born child. It isn’t something my ex and I discuss but it is a bond that we have between us. My children know they have a sister but it isn’t something that comes up in everyday conversation. Life goes on.

Around the time that Abby Annette died, in fact only a few days before, Eric Clapton’s 4 year old son died when he fell off a balcony. I don’t recall it being in the news at the time, though I am sure it was. He wrote the song Tears in Heaven for his son. That song pretty much sums up everything I have tried to convey here.

And it’s much better than Mu Mu Land.

* It’s funny what no longer seems pertinent but I should say that the neural tube defects could have been caught in a series of tests in the first trimester. I chose not to have the test. I figured I was 25 and healthy and if something was wrong we would deal with it. I never imagined that they would or could discover something like this. I was thinking about Downs Syndrome. I knew if I took a test and it revealed something was wrong I would be faced with decisions I didn’t want to make, nor was I willing to make. When I found out I asked if they terminating the pregnancy was a possibility, if I could have a c-section. I was told that that would be considered a third term abortion which my doctor was not permitted to perform. He could induce labor but he could not terminate the pregnancy. I was also told that a c-section was not a possibility because there was no reason for one. It was shortly, only a few months later, that it became public knowledge that taking folic acid supplement greatly decreased the risks of these kinds of neural tube defects. Now breads and other foods are supplemented with folic acid. I should also note that I had had a miscarriage before this pregnancy. Knowing that, I was put on progesterone to help maintain the pregnancy. I had been on Clomid to get pregnant and I was also on Lipitor at the time of conception. I don’t know if there is any correlation to taking a statin and birth defects but they now they say if you are pregnant or plan to become pregnant you shouldn’t take them. While in the hospital I was approached by an ambulance chasing lawyer. I told him to go to hell.

Please don’t feel sad for me. I got 8 1/2 months with my daughter which is something no one else had. If this hadn’t happened I would not have my son who was conceived five weeks after Abby’s birth. I don’t know why things happen I just know that sometimes they do. I have been blessed with two wonderful children and I have an angel looking over me. Not everyone can say that and I feel pretty lucky.

One more side note. When the diagnosis was made my brother suggested that I shouldn’t bother playing the lottery since I already hit my one in a million chance on something. Actually the odds were much better something like 1 in a 1000 if I recall correctly. In those five weeks between pregnancies my ex and I went to the opening of a casino in our area. I hit the jackpot three times winning over $10k. I haven’t bothered to play ever since.