Four weeks today

I hate Tuesdays. For the past four weeks, they have been awful days for me. It's just a reminder of all I lost when Jenna died.

She died on a Tuesday, four weeks ago today, at 11:50 a.m. It will officially be one month Friday. I'll never forget the day she was born, looking at her tiny little fingers and tiny little toes. I still regret that I didn't hold her longer than what I did. It just hurt so bad, and seeing her the way she looked...it wasn't the memory of her that I wanted.

I admit that I'm feeling better every day. I don't feel like crying every single second of every day. Sometimes, I can even think of Jenna and smile, instead of crying. However, whenever I think of December and her due date, when I see a new baby, all the pain comes rushing back.

I don't want to forget her or for anyone else to forget her either. She was my baby, and she existed. It may not have been a long life or a full life or the life I wanted for her, but she was still here.

This post is really just to remember her today, four weeks since she was born.

Focusing on me

I decided to take the time between Jenna's loss and when we can actively try to conceive again to lose weigh. I'm excited to announce that I have lost 27 pounds.

I don't usually share my weight with people, because it's usually a lot more than they think because I carry it well. I started out at 266 in July, which meant I gained two pounds with Jenna and no more. I am now down to 239.

I bought a set of scales that will keep up with how much you have lost. I also have a chart on my refrigerator. I weigh each morning because if I did it once a week, I wouldn't be able to get used to the habit. I weigh myself and then write it on the chart. My first goal is to be down to 200 pounds, which is 66 pounds to lose. I'm almost halfway there.

I have been cutting out all my sugary drinks and eating smaller portions. I don't snack between meals anymore. I've been parking farther and farther away at work and when I go to the store. I've also been keeping my house extremely clean. I never knew housework was such good exercise.

Dr. McGowen said not to do any kind of aerobic activity for four weeks. It will be four weeks tomorrow since Jenna was delivered. Water aerobics is on Tuesday and Thursday night at our Rec Center, so I may go tomorrow night. I loved water aerobics, and I might get there a little early so I can swim for a bit before.

I'm also focusing on myself in other ways, too. I'm seeing a counselor to help me through my grief. She's helping a lot although I do feel emotionally drained after a session.

The other thing I did was cut my hair very short. I'm now 100 percent gray. I did it for a while before, but decided to color it back in January. Even though I'm only 31, I'm glad I've decided to be gray. It means I'm confident enough in myself to do it.

I've been having a problem with redness on my face, but it really didn't bother me. Now, I've discovered a regimen that is clearing it up, and my skin is starting to look really good for the first time in a while. I was my face with Baby Magic body wash and then lather on Aveeno Simply Smooth Moisturizing Cream. It diminishes fine lines and facial hair. My facial hair is pretty bad, due to me having PCOS. I pluck it, but the cream is working well, too.

My counselor says I'm focusing on all these things because it takes my mind off the loss. She says it's not totally a bad thing, as long as I am allowing myself to grieve, which I am doing. It just feels good to feel good about myself right now.

To help those with no choices

I've wanted to start a Web site support group for women who wanted to end their pregnancy early but couldn't for one reason or another. I wasn't really sure how to go about it, but I think I've found my solution.

The new www.babycenter.com allows anyone to create a board for whatever they want. That takes care of my hosting issues. I've also found someone who is willing to help me with it, as co-owner. She was in my situation, too, except her baby had Triploidy.

I've posted a message on the termination for medical reasons board looking for lurkers who might be in that situation. I'm hoping to get some responses from them. I'm also thinking of posting on the poor prenatal diagnosis boards, too.

I think this board could be for women who can't terminate due to state law, the inability to travel, financial reasons or because they are afraid of someone judging them. I don't want anyone to feel alone who hasn't been able to end a pregnancy with a poor prenatal diagnosis.

The time after a diagnosis is so painful and full of fear, and no one should feel alone while going through it. If you are reading this and would be interested, please leave me a message.

Regrets

I think most people can look back at their life and see where they might have some regrets. I know I do, especially with all the things that have happened over the past two months. I really wish I could look back at that time with no regrets, meaning I did everything to satisfy mine and Brian's needs, but I'm not sure I did.

We had promised we would take Tessa to the big ultrasound so she could see the baby. We never had the official big ultrasound; it was given to us to check for markers after the AFP test came back positive. At that point, Brian and I were so scared and nervous we didn't think we could handle having her there. Now, I wish Tessa could have gone with us to it. As it is, Jenna isn't totally real to Tessa. She knows she existed. She knows Jenna was in my tummy, but she had no concrete proof that Jenna was there. I wish she could have seen her moving on the ultrasound screen, to see her little sister playing in there, as she would never get to do outside the womb.

I regret ever having made that trip to Atlanta. I wanted to end the pregnancy, and I still wish I could have had that option. However, I wish the trip could have been a different clinic, where the women who have made the most difficult decision they will ever face can be pampered while they are being taken care of, but I don't see this kind of thing ever happening. The best thing about a place like that would be is that the only terminations to be done are for a poor pre-natal diagnosis, so the women who need this kind of place can go to it without having to mingle with the women who are happy to be getting rid of a pregnancy. I wish some place like that existed, and I regret I couldn't have it to be my experience.

I wish I had held her longer. The emotions were overwhelming me when the nurse handed her to me. I wanted her cleaned up before I held her. The nurse brought her wrapped in a blanket, which I was able to fold away to look at her. For about five minutes, I was able to admire her fingers (enough to see they weren't clenched as most Trisomy 18 babies) and her feet and toes. I got to count them. The longer I held her the more I felt like I didn't want to give her up; I wanted her there with me. My heart was screaming; it was hurting so bad. That's why I gave her back to the nurse, who promised to take good care of her. Now, I just miss holding her in my arms. They feel so empty.

I also regret that we weren't farther along when she left us. If I had been, Now I Lay Me Down to Sleep, an organization that comes in when a child over 25 weeks dies and takes pictures for the family, could have come for us. They clean up the photographs, often changing the color to black and white. Someone told me to go ahead and a call them, especially when I found out my photographer friend wasn't available, because NILMDTS will come take some pictures under 25 weeks. I didn't do it, because I didn't want to inconvenience anyone. Now, all I have are the photographs they took at the hospital, which are kind of blurry, and the ones my aunt took, which show all of the birth defects she suffered and damage caused at birth. There isn't too much that could be done to those.

I guess I'm going to live with these regrets all of my life. Right now, my arms feel so empty, and I'm afraid they might always. Even though I didn't have anything to do with her having Trisomy 18, I still regret that she had it. I wish I was now 24 weeks pregnant, getting bigger, having the glucose test for gestational diabetes, getting closer and closer to my due date.

Just a clarification

In my last post, I said that Down Syndrome is a fatal pre-natal diagnosis. Someone rightfully pointed out to me that it isn't necessarily fatal.

I totally agree with that poster. However, Down Syndrome people can have heart disorders, which are fatal. Many of these disorders require a heart transplant, and most doctors (and the transplant teams) will not give a heart to a Down Syndrome person. That's a shame in my opinion, because Down Syndrome people are loving, capable and just as deserving of medical care as anyone else.

So, even though it is not necessarily fatal, it can be, and honestly, even those who decide to end a Down Syndrome pregnancy without a fatal disorder should not be made to feel alone and helpless and without options.

I just want to help people and keep them from having those feelings.

Feeling alone and without choices?

Several weeks ago, when I first found out Jenna was sick, I was given a short list of options. I could travel to Atlanta or wait it out. What kind of options were those?

After the fiasco in Atlanta, I felt even more alone and without choices. Where were the people like me who wished they could spare their child the pain and suffering of Trisomy 18 or some other fatal diagnosis but couldn't because of state law? I wanted to talk to them because I felt so alone, but I couldn't find anyone. Most people who wanted to end their pregnancy early were able to, and the same went for those who were carrying to term.

But, me, I wasn't doing what I wanted. I was floating in a sea of never ending confusion and guilt, confusion because I wanted to end the pregnancy to keep Jenna from suffering and guilt because I wanted to end a much-wanted pregnancy. Where were my choices? Isn't the freedom of choice having the choice to decide between having an abortion and the choice not to?

I don't ever want anyone to have to go through that again. No one should ever feel that alone and helpless, as though their hands are tied behind their backs and something is being forced down their throat.

I'm thinking of starting a Web site for people who were in my situation. However, I don't know how many women have actually been there. If you are reading this and have been in this position, please let me know. I really need to know how many people would support a board like this. It wouldn't have to be just for Trisomy 18; it could include any fatal pre-natal diagnosis, such as Triploidy, Hypoplastic Left Heart Syndrome, Down Syndrome, amniotic band syndrome, etc.

So, if you have ever wanted to end a pregnancy because of a fatal pre-natal diagnosis but couldn't due to state law, insurance issues, travel issues, etc., please, please let me know. I'm really interested in doing something to keep women like us from feeling so alone.

I wish I didn't worry

I have always been a worrier. When Tessa was a baby, I checked on her all the time. We even co-slept because her bedroom was at the other side of the house, and I was so scared someone would come in and get her. Over the last five years, I have relaxed somewhat and will even allow her to play outside by herself.

All that has changed now. My worries have come back full-fold since Jenna was diagnosed and died from Trisomy 18. I now know bad things do happen, and the worry isn't for nothing.

Today was Tessa's first full day of kindergarten. She went for three half days before the school system closed for the National Tennessee Walking Horse Celebration. I didn't cry too much on her first day of school. I think I was still numb from losing Jenna, but this morning, I cried.

It was so hard turning her over to a stranger, a stranger who is going to be with her all day long. My aunt kept her all day until she started preschool, and then she stayed there after her half day at preschool was over. She has never been kept for that length of time by anyone other than family.

I know they won't watch her and love her like my family and I have. I knew that about preschool, too, but that was before Trisomy 18 and Jenna's death. It also wasn't all day.

The worst part of it is she has to ride the bus home from school. School buses don't have car seats or seat belts, and she's still a tiny little thing. Also, we live on a cul-de-sac, and the bus has no room to turn around if it comes down our road. So, she will have to get off the bus, walk in front of it on a large highway and walk down to my aunt's house, which is all the way at the end of the road.

Our neighbor's son rides the bus home, and I told her this morning to hold his and be sure to look both ways. I'm terrified of her getting hit by a car, but she told me last night, "Don't worry, momma. I'll be fine. Don't you trust me?"

I told her I trusted her but not the drivers on the road. I wish I could be one of those parents who don't worry, but I will never be that way, not since Trisomy 18 cast a cloud over our home.