My letter writing campaign

When Jenna was diagnosed with Trisomy 18, I had to make the hardest decision of my life. I had to decide whether to end the pregnancy early or carry to term. I wanted to spare her a life of pain, but how could I end the life of much-wanted, much-loved child?

When I made my decision to end the pregnancy early, I likened it to turning off the life support on a brain-dead child. My body was Jenna's life support, and by ending the pregnancy, I was turning it off and giving her a chance to die with dignity and not suffer. However, as all of my long-time readers know, I wasn't able to terminate due to state law.

I've been reading up on the laws in Tennessee. They are absolutely horrid when it comes to a woman's right to choose. The law states that all abortions in the second trimester be done in a hospital, but the law also states that doctors and hospitals can refuse to perform them. How is it right for a hospital to deny me treatment that I want and feel I need? The law about hospitals and doctors doesn't even offer an exemption in the life of the mother. What about in the case of pre-eclampsia at 20 weeks? Would the woman have to die because a hospital refuses to take the baby?

These laws have to be changed. They absolutely can not stay as they are written. An exception has to be added to the state laws for the cases of a fatal pre-natal diagnosis, rape or incest and the health of the mother. I believe all women should have the right to choose, but these special circumstances should be the exceptions for these laws.

According to the NARAL Pro-Choice Web site, Tennessee ranks a dismal D+ in reproductive rights for women. That has to change, for you, for me, for our daughters and for all those sick unborn babies who will have to suffer if they are brought to term.

So, I am starting a letter writing campaign. I found out that our state representative is Democrat, however, he is also pro-life and so is the Republican candidate. Most of our state leaders are pro-life. It's going to be a hard road to go, but I have to do it. This will be Jenna's legacy.

It's for the best

One of the things we don't want people to say to us is that it's for the best. In fact, the lady who wrote the letter in my last post said it best:

"Don't say, "It was for the best - there was probably something wrong with your baby." The fact that something was wrong with the baby is what is making me so sad. My poor baby never had a chance. Please don't try to comfort me by pointing that out.

Every day I feel guilty that I wasn't able to do something to help my daughter. Momma's are supposed to kiss the boo-boos away, but Trisomy 18 is not an ordinary boo-boo. It's fatal, always. Nothing I could do would change that. It haunts me.

I should have been able to find a doctor to help her. Love should have been enough to save her, but it wasn't. Trisomy 18 was just too much for her to overcome.

If love could have saved her, Jenna Grace would have lived forever. She was loved by a lot of people before she was even born.

Jenna didn't have a chance. From the moment sperm fertilized egg, she was doomed to be incompatible with life. Like the writer of the letter, I don't need to be reminded of that. I will always know it, because she isn't here with me. She's dead, and even though I have said myself that it's for the best and know it to be true, I wish it wasn't. I wish she didn't have to be sick at all.

What we wish everyone knew about pregnancy loss

I found this on a discussion board I frequent, and Ithought I would post it here. I will probably do another post discussing a few of these.

What we wish you knew about pregnancy loss:

A letter from women to their friends and family by Elizabeth Soutter Schwarzer I assert no copyright for the material. Please use it as you see fit to help women who have endured this terrible grief. Thank you.

Date: Sat, 23 Mar 2002

When women experience the loss of a child, one of the first things they discover they have in common is a list of things they wish no one had ever said to them. The lists tend to be remarkably similar. The comments are rarely malicious - just misguided attempts to soothe. This list was compiled as a way of helping other people understand pregnancy loss. While generated by mothers for mothers, it may also apply similarly to the fathers who have endured this loss.

When trying to help a woman who has lost a baby, the best rule of thumb is a matter of manners: don't offer your personal opinion of her life, her choices, her prospects for children. No woman is looking to poll her acquaintances for their opinions on why it happened or how she should cope.

*Don't say, "It's God's Will." Even if we are members of the same congregation, unless you are a cleric and I am seeking your spiritual counseling, please don't presume to tell me what God wants for me. Besides, many terrible things are God's Will, that doesn't make them less terrible.

*Don't say, "It was for the best - there was probably something wrong with your baby." The fact that something was wrong with the baby is what is making me so sad. My poor baby never had a chance. Please don't try to comfort me by pointing that out. -Don't say, "You can always have another one." This baby was never disposable. If had been given the choice between loosing this child or stabbing my eye out with a fork, I would have said, "Where's the fork?" I would have died for this baby, just as you would die for your children.

*Don't say, "Be grateful for the children you have." If your mother died in a terrible wreck and you grieved, would that make you less grateful to have your father?

*Don't say, "Thank God you lost the baby before you really loved it." I loved my son or daughter. Whether I lost the baby after two weeks of pregnancy or just after birth, I loved him or her.

*Don't say, "Isn't it time you got over this and moved on?" It's not something I enjoy, being grief-stricken. I wish it had never happened. But it did and it's a part of me forever. The grief will ease on its own timeline, not mine - or yours.

*Don't say, "Now you have an angel watching over you." I didn't want her to be my angel. I wanted her to bury me in my old age.

*Don't say, "I understand how you feel." Unless you've lost a child, you really don't understand how I feel. And even if you have lost a child, everyone experiences grief differently.

*Don't tell me horror stories of your neighbor or cousin or mother who had it worse. The last thing I need to hear right now is that it is possible to have this happen six times, or that I could carry until two days before my due-date and labor 20 hours for a dead baby. These stories frighten and horrify me and leave me up at night weeping in despair. Even if they have a happy ending, do not share these stories with me.

*Don't pretend it didn't happen and don't change the subject when I bring it up. If I say, "Before the baby died..." or "when I was pregnant..." don't get scared. If I'm talking about it, it means I want to. Let me. Pretending it didn't happen will only make me feel utterly alone.

*Don't say, "It's not your fault." It may not have been my fault, but it was my responsibility and I failed. The fact that I never stood a chance of succeeding only makes me feel worse. This tiny little being depended upon me to bring him safely into the world and I couldn't do it. I was supposed to care for him for a lifetime, but I couldn't even give him a childhood. I am so angry at my body you just can't imagine.

*Don't say, "Well, you weren't too sure about this baby, anyway." I already feel so guilty about ever having complained about morning sickness, or a child I wasn't prepared for, or another mouth to feed that we couldn't afford. I already fear that this baby died because I didn't take the vitamins, or drank too much coffee, or had alcohol in the first few weeks when I didn't know I was pregnant. I hate myself for any minute that I had reservations about this baby. Being unsure of my pregnancy isn't the same as wanting my child to die - I never would have chosen for this to happen.

*Do say, "I am so sorry." That's enough. You don't need to be eloquent. Say it and mean it and it will matter.

*Do say, "You're going to be wonderful parents some day," or "You're wonderful parents and that baby was lucky to have you." We both need to hear that.

*Do say, "I have lighted a candle for your baby," or "I have said a prayer for your baby."

*Do send flowers or a kind note - every one I receive makes me feel as though my baby was loved. Don't resent it if I don't respond.

*Don't call more than once and don't be angry if the machine is on and I don't return your call. If we're close friends and I am not responding to your attempts to help me, please don't resent that, either. Help me by not needing anything from me for a while.

If you're my boss or my co-worker:

*Do recognize that I have suffered a death in my family - not a medical condition.

*Do recognize that in addition to the physical after effects I may experience, I'm going to be grieving for quite some time. Please treat me as you would any person who has endured the tragic death of a loved one - I need time and space.

*DO understand if I do not attend baby showers/christening/birthday parties etc. And DON'T ask why I can't come. Please don't bring your baby or toddler into the workplace. If your niece is pregnant, or your daughter just had a baby, please don't share that with me right now. It's not that I can't be happy for anyone else, it's that every smiling, cooing baby, every glowing new mother makes me ache so deep in my heart I can barely stand it. I may look okay to you, but there's a good chance that I'm still crying every day. It may be weeks before I can go a whole hour without thinking about it. You'll know when I'm ready - I'll be the one to say, "Did your daughter have her baby?" or, "How is that precious little boy of yours? I haven't seen him around the office in a while."

Above all, please remember that this is the worst thing that ever happened to me. The word "miscarriage" is small and easy. But my baby's death is monolithic and awful. It's going to take me a while to figure out how to live with it. Bear with me.

Nobody but me

Yesterday was one month since Jenna was born, and nobody remembered-- nobody but me. I don't blame Brian so much as he has been working so much lately that he wasn't even sure of the date.

I thought my mom would remember or my sister, my aunts, my friends, someone besides me. I wanted someone to say, "I remember and I'm sorry." No one did, and I didn't feel like telling anyone. I wanted them to remember her on their own. I bought two balloons, a pink one and a white one, yesterday and released them on my lunch hour. I didn't put a note with them. Maybe next time I will.

I just wanted someone to remember. Is she going to be forgotten forever? Is my mom always going to leave her out when she says how many grandchildren she has? People don't ask how many grandchildren you have that is living; they ask how many you have. She has five altogether. She shouldn't forget about my Jenna.

Am I doomed to be the only one who remembers her? I just want her life to have mattered. I told my counselor that, and she said, "She did matter. She mattered to you," and yes, that may be true, but if she had lived and been healthy, she would have touched countless lives. I still want that for her. It just seems like nobody remembers her, nobody but me anyway.

Jenna's story

We lost Jenna one month ago today. In honor of that and also because of new people who might be coming to my blog, I decided to post the version of her story that is on her legacy page at www.trisomy18.org. I hope I help someone with our story.

My husband, Brian, and I spent three years trying to conceive our oldest daughter, Tessa. After three rounds of Clomid, we were pregnant, and she was born in May of 2003. After going through all of that, we weren't sure if we wanted to try for another baby or not.When my granny died in December of 2007, I knew I wanted to have another baby. I knew she would have loved another great-grandchild, and I was really feeling the baby itch again. So, I asked my doctor to help us, and she prescribed Clomid. The first month didn't work, but we conceived on our second try. We were overjoyed, especially when we found out we were due in December. I thought we would be able to take that month back from the grief we would experience over Granny's death and turn it into something joyous with the birth of our second child. How wrong I was.

Everything was going well with our pregnancy. When I was pregnant with our daughter, Tessa, I was sick morning, noon, and night, but with this baby, I hadn't been sick at all unless I went too long without eating. The worst symptom I had was extreme exhaustion. When I was 16 weeks pregnant, we went to the doctor July 7, 2008, for our monthly appointment. Our doctor asked if we wanted to have the AFP test and warned it had many false positives. I knew this already, but I wanted to have it done to be prepared in case our child had Down Syndrome or Spina Bifida.

Trisomy 18 was the last thing on my mind. Two days later, our doctor called me and said the test showed our baby had a one in 10 chance of having Trisomy 18. I knew it was incompatible with life. I had read about it when I was pregnant with Tessa.My heart dropped, and my doctor said she wanted to set up an appointment with a maternal fetal medical specialist for the next day. We went in and had a level 2 ultrasound done and then met with the specialist. He told us the baby was small, and it was hard to see organs. He did think the baby had a cystic hygroma and a clubbed foot. He thought we should have an amniocentesis done, but we couldn't have it done that day because the amniotic sac hadn't fused to the uterus yet. He wanted us to give it a week, and we scheduled the appointment for July 18.The next week was the longest of my life. I knew in my heart something was wrong, even though everyone told me not to lose hope. The amniocentesis wasn't too bad and didn't really hurt at all. I was expecting it to be much worse than it was. We were getting the FISH results, which offer results in 48 hours instead of the normal two weeks.My doctor called me on July 23 and told me the FISH results showed our baby was a girl and she had full Trisomy 18. She said that she had never seen the FISH results be different or better than the final results. Before we made any decisions, she wanted to wait until the full results came in. She said she believed if we wanted to, we could say goodbye early and deliver at a hospital in Nashville.

I thought that was what we would do, but I still had many thoughts going through my mind. How could I say goodbye to the baby I wanted for so long? How could I make the decision to stop her heart? I'm not a religious person at all, but I do believe in a higher power and a place we all go to when we die. Brian and I talked about, and we decided we would say goodbye early. We did not want her to suffer, and we both had always believed in the quality of life over the sanctity of life.That night we discussed what we wanted to name her. I said something about Mary Grace, and Tessa said she didn't like it. She wanted to name her Jenna Grace. We decided since she wouldn't ever get to know her sister, we would let her name the baby. Instead of the baby, we now had Jenna Grace. We received our full results July 29. We went to see our doctor, and she said we would not be able to deliver in Nashville. We knew we wouldn't be able to do it at the hospital in Murfreesboro, because it was a Catholic affiliate, but the news we wouldn't be able to do it in Nashville shocked me.

Our doctor said it had to do with the political climate in the state, along with the law here that states second trimester abortion has to be done in a hospital. Many hospitals just don't want to have to do it as many doctors are opposed to it ethically. We were facing the hardest decision of our lives, and we were being treated as though we were doing something criminal.

She told us our best option was to travel to the Atlanta Surgi-Center and have a D&E. She said it was not an abortion clinic, and they had a special program for parents who had a poor prenatal diagnosis. I called and made the appointment for the weekend, as they only did the procedure on Thursday, Friday and Saturday. They asked for a lot of information, including my weight, which I told them, and I also had my doctor fax my records to them. Brian and I made plans for the weekend. Our appointment was scheduled for Aug. 2, 2008, and we left on Friday. They told us I was eligible for the one day procedure. My mom was keeping my daughter for us. On Saturday, we traveled to the clinic and found out we had made a huge mistake. Our doctor had been wrong.

It was an abortion clinic, and I was grouped in with the other ladies, who were giggling and laughing and joking, happy their pregnancies were soon to be over. I wanted to yell at them and tell them I would take their babies, and they should be happy to be pregnant with a healthy child. I’ve always been pro-choice, so it was very confusing to feel that way.I was called back to pay and go over some paperwork. I thought we would be separated from the other girls and women then. She asked me again what I weighed, and I told her. After that, she made some notes and said I would have to wait until the lab technician got there, so they could weigh me as there had been a mistake. She sent me back out to the waiting room. About 30 to 45 minutes later, my name was called again, and I thought for sure we would be separated then. I was wrong again, and they once again sent me out into the waiting room. We had to wait again. The room was filling up with more and more girls and women and the people they had chosen to drive them home after the procedure. My name was called again, this time by the ultrasound technician.

She led me back to the ultrasound room and said a mistake had been made. Because of my height and weight, I wasn’t eligible for the one-day procedure. I had to have the two day, and they couldn’t do it then. She also said the clinic had a special procedure for treating parents like us, and it hadn’t been followed. She apologized and said she was going to do an ultrasound to date the pregnancy and asked if Brian wanted to see. I knew he would, so she went to get him and explained what had happened. He was also furious and said he felt like he had been mislead. I felt like it, too.

The ultrasound showed the baby was measuring two weeks behind and said it looked as though she didn’t have much brain matter. She quoted me a new price, lower because the baby was smaller and said we could reschedule for the next week. We met with the counselor and left. We wound up staying in Atlanta for the weekend, because we had made reservations for two nights, and checkout time had already passed.

More decisions had to be made. Did we want to travel back to Atlanta again to have the procedure done? Or should we try to find other options? I was beginning to think we just let nature take its course and let her go on her own.

We met with the doctor on Aug. 5, the day before my 31st birthday. She told us we could travel to Louisville, KY or Arkansas, but no other place was closer. Our specialist had called Atlanta to complain and had decided not to send any more patients there. She also said she hadn’t known it was an abortion clinic, or she would never have sent us there. I told her we had decided to carry to term, and she agreed it was our best option. She listened to Jenna’s heartbeat, which was going strong. We had only had one appointment where her heart rate was low, and I believe she might have been sleeping then. Her strong heartbeat showed us how stubborn she was, and we decided to set up an appointment for the next Monday to see what birth defects Jenna had. I would be going back to the specialist.

Our appointment was Aug. 11, and Brian couldn’t go with me. He had to take Tessa to her kindergarten check-up, so I asked my aunt to go with me. I’m glad I did. The ultrasound technician was so nice and chatty. When she moved the wand over my tummy, I knew something was wrong. Jenna was not moving. The ultrasound tech said, “Sweetie, I’m so sorry but there is no heartbeat.”

I just cried a little. I think I was in shock. I had been preparing myself to go to term, and she had already died. I was sad, but it hadn’t really hit me yet. I kept thinking she was no longer in pain and would never be. Our specialist sent us back to my doctor, who told me to come in later that night to be induced. I wanted to do it right away because Tessa started kindergarten on Friday, and I wanted to be there for her. Another aunt said she would keep Tessa, and we arrived at the hospital at 8 p.m.

Our first nurse, Dawn, was wonderful. She explained what was going to happen. They would insert cytotec pills every six hours, which would cause me to dilate. I could have as much pain medicine as I needed, and if I needed an epidural, I could have one, too. The cytotec insertion was very painful, and I began having cramps soon. They gave an Ambien to help me sleep, and some Dilaudid for pain. At 5:30 a.m., I received my epidural.

Brian was wonderful through all of this. At 7 a.m., our second nurse came on shift. Her name was Marta, and like our first nurse, she was an angel. Jenna was coming feet first, and Marta said I would have to dilate farther to deliver her. She also told us it would take awhile. She said if she had been coming in head first like she was supposed to, she would have been born much sooner.My mom came to the hospital, and I sent Brian home to take care of some business that had to be done before Tessa could start school. I knew he wouldn’t be able to handle it all emotionally, and I also knew he didn’t want to see Jenna after she was born.

Around 11:30 a.m., I felt something and called for the nurse, who checked and said Jenna was on her way. The doctor came in, and at 11:50 a.m., Jenna Grace was born. She weighed 4.4 ounces and was a little over 6 inches long, which was very small for gestation, normal for a Trisomy 18 baby. The delivery process had been rough on her body. Because her skull hadn’t fully formed and she had little brain matter, her little head had collapsed before delivery. No mother should ever have to see something like that. She had all 10 fingers, and they weren’t clenched like many Trisomy 18 babies. She had one clubbed foot, but all 10 toes where there. Even though her face was disfigured because of the damage, I could tell she would have had Tessa’s nose.

We have pictures, but they aren’t very good. She was almost 21 weeks when she was born.We had a memorial service Aug. 24, 2008. It was well attended by my family. The preacher who spoke mentioned my granny and said she was taking every opportunity to rock Jenna Grace in Heaven. My sister-in-law also drew a special picture for me. She asked me a few weeks before for pictures of Granny’s hands, which I had because I’ve always loved hands. She drew Granny’s hand reaching down to a sleeping angel baby. I love it and have it on my end table.

I miss my little girl every day, and I wish I could have had five minutes with her alive. Of course, I know if I had had those five minutes, I would have wished for five minutes more and five more minutes for all of time. She is no longer in pain and will never know it, so I can be happy about that but sad she is gone.

I am angry

Elisabeth Kubler-Ross outlined the five stages of grief in her 1969 book, "On Death and Dying." The stages are denial, anger, bargaining, depression and acceptance.

According to her, not everyone who is grieving will go through all five stages. People also don't go through them in particular order. I think I went through the bargaining phase early on. I can't think how many times I said, "Please let us have a miracle; I'll do anything for a miracle." Of course, we didn't get our miracle.

I also went through a period of denial. This happened after we weren't able to end the pregnancy early. Very often, I thought, "I would have been able to terminate if she had really been sick. That was a sign that we're going to get a miracle, and she'll be fine." Of course, I found out Aug. 11 this wasn't the case. She had passed on her own.

I'm still in the middle of a depression, but it's not as much as what I'm feeling now. I'm angry. I'm furious. I'm mad. I want to pitch a fit, punch holes in the hall, break plates, hit someone, but I know I can't. I'm so confused about what I'm angry about. Why did she have to have Trisomy 18? Why my baby? Why not the baby of some crackhead whore who shouldn't have been pregnant in the first place? After I think that one, I then feel guilty, which just makes me even angrier.

I am also angry I wasn't able to end my pregnancy. If a woman simply doesn't want a baby, she can go to any clinic in the state to have it done, as long as it's in the first trimester. Most prenatal testing is done after the first trimester, especially amniocentesis, which is one of the most accurate ones. I wanted to spare my baby of a life of pain, but I had to travel out of state to do it, had to slip away as though I was doing something wrong. I felt I was being punished. Where was my choice in all of this? Whenever I hear someone say they are supporting McCain and Palin in the election, I just want to shout at them. I want to yell, "Because of politicians like the two of them, I didn't have a choice. I had to take the chance of subjecting a much loved and much wanted baby to a life of pain."

I'm angry when I read about pro-life stances. If I had ended my pregnancy due to the Trisomy 18, it would not have affected anyone else except for my immediate family members, who all supported me in my decision. Where was my choice? Politicians and pro-lifer's took away that choice. They had a choice, the choice not to have an abortion. My rights were taken away from me.

And, I'm angry I had no control over my situation. I wasn't able to make choices that were right for my family. Decisions were taken out of my hands and put into those of the lawmakers. Why and how is this right? We are more humane to our animals than we are to our children and the sick. I'm angry about that as well.

Another part of me is angry I wasn't able to carry to term. This is where confusion reigns. Why should I be angry that I didn't carry to term when I wanted to end my pregnancy early? I don't know why, but I am. If I couldn't end it, I wanted to see her as a full-term baby and have that extra time with her. Even a minute would have been better than nothing. But, if I wanted to end the pregnancy early, why am I feeling this way? Even the confusion is making me angry.

I'm angry December won't be a good month for me. It was already ruined because of granny dying, but I thought Jenna's arrival would make things better. Now, I don't know how I'm going to get through Christmas, with everyone happy to be celebrating the season and me thinking of all I lost when Jenna died. And I know I'll have to put on a happy face for everyone else when I'm dying inside, and I'm angry about that, too.

I'm angry people actually think they know what they would do in this situation when they've never been there. I'm tired of hearing, "I would just let God handle it," or "I think I would carry to term so I could meet her." Those statements make me angry. Anger fills me, and I have to fight not to shout at them. They have no clue what they would do, none at all, not until they've been there.

No one wants to talk about Jenna or my loss, and this makes me angry, too. I want to talk about it. Talking about it makes me feel better. When I talk about her, I'm able to keep her memory alive. Tessa told me yesterday, "I want a little brother or a sister."

I said, "You have a sister, Jenna. Remember?"

And, she said, "But, I didn't get to meet her. I want one here."

It makes me angry that she'll probably forget about her little sister and might not even remember this time. I'm angry she didn't get to meet her sister.

I hate feeling angry. Being angry over all these things just make me feel even angrier. I'm usually the happy-go-lucky person who looks for the best in everything but not lately. Lately, all I can see is the anger. It even clouds the good things, the going back to school, the weight loss. I want to be out of this stage soon.

Making a decision

For the past few months, Brian and I have been talking about me going back to school to receive my teaching credentials. I still want to go back to school, but I have changed my mind about what I want to do.

I lack two semesters having my degree in psychology. I was good at it and wanted to be a therapist, but I didn't want to have to go to graduate school in order to find a job. That's why I chose journalism.

Now, I think I want to go back and finish and then get my master's degree. It probably won't take any longer than it would to get my teaching credentials, because I would have to have several different classes before I can get into the program at Motlow, our two year college which has contracted with Tennessee Tech to provide the teaching program.

I want to counsel women who have lost a child at any stage. I think Jenna is telling me this is what I need to do. Even my counselor said I would make a good therapist.

However, there is a problem. I hate Middle Tennessee State University, where I would have to go to finish my degree. It's an awful place, and I hated every minute that I went there. I have decided I'm going to check out online colleges to see if I can get my degree there. I'm actually excited about going back to school.