Jenna's legacy page

When I first found out Jenna might have Trisomy 18, I visited www.trisomy18.org and www.trisomy18support.org to find out more information. The people there are wonderful. They provided support, answers to my questions and expressed their sorrow at our bad news.

I visited the Legacy pages, where parents share the story of their child. I cried over their stories of loss and heartache, hoping I wouldn't have to be one of them. When we found out Jenna was so sick with Trisomy 18, I decided no matter what decision we made, I was going to create her a legacy page so everyone I know could learn about her and donate funds to the foundation.

The Trisomy 18 Foundation provides support and information for parents who are facing a diagnosis, friends and family who loved ones facing a diagnosis and also for medical specialists working with Trisomy 18 families. It is also doing research to find a cure for the disease and prevention to keep it from happening to another family.

I waited until today to write out the whole story. It took me a while because I cried while I was writing some parts of it, reliving the moments when I was rocked to my core. The story isn't as beautifully written as I would like it to be, but I knew how emotional I would get if I immersed myself completely into the story.

I am not one to ask for donations, but this foundation is wonderful. They have helped me so much and helped others going through this, too. If you can make a donation in Jenna's name, I would appreciate it. If you can't, it's not a big deal, but I would love to have you sign the guestbook there. Either way, please leave me a comment here to let me know you visited. I am including the link to her legacy page.

http://www.trisomy18.org/site/TR/Events/General?px=1143701&pg=fund&fr_id=1070

Messages from my sweet baby girl

Do you believe those who have gone on before us can send us messages to let us know they are thinking of us and love us?

After my granny died, I heard her voice, which she hadn't been able to use for nearly two years due to Parkinson's Disease. This terrible, progressive illness robbed her of her ability to speak, and we all missed being able to hear her talk and laugh, because she had a great sense of humor. Being able to hear her voice again made me feel close to her. I don't know if it was really her or if it was my mind wrapping itself around the grief I was feeling and letting me hear her voice to comfort me, but either way, it helped.

Now that I've lost Jenna, I've wondered if I would find a way to feel close to her like I did with my granny. I might sound crazy, but I think she's finding ways to let me know she's all right and thinking about me.

My first sign was a few days after I came home from the hospital. I opened up my gmail account and went to empty the spam. I scrolled down through it like I normally do, just scanning to make sure nothing was there that I needed to keep. My mouth dropped open when I saw one of the e-mails was from someone named Jenna, and the subject line read "Thinking of You." I opened it, and it was spam for a greeting card line. Almost every day since then, I've received the same spam, and it even came to my yahoo account once or twice.

Even though I know logically it is a coincidence, I feel like she's letting me know she's watching over all of us and thinking of me. Maybe it's her way of telling me not to feel so bad, we will see each other again.

The day of Jenna's memorial service, we had one of the pastors read a story about a dragonfly. Someone posted it on the support board I've been going to, and I fell in love with the story. After the service was over, we went out to the cemetary to visit my granny's grave, and we saw two dragonflies, flying through the air, flitting around each other as though they were playing. I'd like to believe it was my granny and Jenna, letting us know they were with us.

Yesterday, I was cleaning house and walked past the picture my sister-in-law drew for us. The sun hit it just right and on my leg was a rainbow. The sun moved behind the clouds and out again, making the rainbow dance. I smiled, knowing it was my baby girl.

I might sound crazy, but I think Jenna is letting me feel her presence. I really hope it continues.

I had a baby, not a situation

Today was my second day back at work. When I came in, I had a card from the Alzheimer's Association on my desk. It was signed by all the people I've worked with there over the years. I also had a card from one of the assisted living homes in the area. I really appreciate both of them doing so. I've been working with them for years.

I also received a phone call from the president of our local Baptist Association. He does all the publicity for the organization, and a few days before Jenna died, he sent me a press release about a program they had in the area. He started the conversation by telling me that he was sorry to hear that I had a stillborn baby. He went on to tell me that he was fussing at me in his mind because he hadn't seen it in the paper, and then he opened last Wednesday's edition to find Jenna's obit in there. He said, "I thought Tamara had so much more to worry about than our little announcement. I felt so bad, and I wanted you to know I've been thinking about you."

He is the sweetest man. Two years ago, when my granny first got sick, the pastor at her church wouldn't visit. We aren't sure why, but he would even go so far as to charge the church extra for a sick visit. Granny needed to talk to someone, because at that time, we thought she might be depressed because she had lost her sister. He said that if we couldn't get her pastor to come and visit, he would. When I was talking to him today, I told him that I wasn't sure if it had ran or not, and he said it was ok. I do feel bad if it didn't get in there, but most things from work from the last two months are mostly a blur.

Then, I got another call from a lady I did an interview with a week before Jenna died. I know it never ran because I never had a chance to do it. She asked me how I was doing, and I gave my standard "I'm all right."

She then said, "Betty told me you had a situation. I suppose it will take you a while to get over."

WTF? I mean really? I wanted to say, "I didn't have a situation. I had a baby, a baby girl to be exact and her name was Jenna. She was very sick with Trisomy 18, and she died. She wasn't a situation, she was my baby girl and I loved her."

A sitaution is being overdrawn at the bank or having a car wreck or getting a speeding ticket. Losing your baby girl to a terrible, fatal illness is not a situation; it's a tragedy. As a woman who has had children, she should be able to realize calling it a situation are not the right words to say.

I wish I could have corrected her, but I so stunned at that point I couldn't do it. She needs to be educated on how to talk to people who are going through (in her words) a situation.

I apologized for the story not getting in, and she said it was fine because she had a follow-up to it. She brought it up there today to me. Luckily, I was out to lunch when she came or I would have had to see her, and I might have said the wrong thing toher, as it has bugged me most of the day. She didn't even say she was sorry. Now, I'm thinking of not doing her measly little human interest, which really wouldn't appeal to too many as it is.

The moral of this story is to learn from my examples -- sympathy cards with a nice handwritten message are wonderful; telephone calls where they acknowledge what happened and offer sympathy are extraordinary but calls that only refer to this as my situation without going into detail are a load of crap and are completely insensitive.

Please, if anyone who hasn't lost a baby is reading these tips please learn from my examples. As a kind of aside, please don't tell anyone who has lost a baby to Trisomy 18 that it was for the best for them to die. We know that logically, but most of us wished we could have had a lot more time with them.

What she'll never do

Last night, I visited with my sister and my nephew. Usually, being around him doesn't bother me, because he is a boy and Jenna was a girl. Little baby girls do cause me to tear up and want to break down, but little boys are different.

But, last night, as I looked into those big blue eyes of his and held him on my lap, I began to think about all the things he will experience that Jenna will never have the chance to do. Oh, I've thought about all the big things, graduations, weddings, children, and that hurts. But it also hurts to think of all the the little moments we will miss out on.

My arms will never hold her again, and I will miss that feeling of her in my arms, falling asleep as I gently rock her and sing lullabies, all the while looking into her eyes as they get lower and heavier with sleep. Jenna and I will never get to have those middle of the night bonding sessions, where it seems only the two of us are awake, her warm body pressed against mine. Jenna won't ever be able to learn to bounce on my lap, as my nephew Miller loves to do.

No crawling, no running, no first birthdays, not even a chance to pick out a backpack for the first day of preschool -- Jenna will get none of that. All she ever knew was me and my voice and my body, and how I long for her to have had so much more than that.

She and Tessa will never get to have all the fun sisters have. She won't be the bridemaids in Tessa's wedding and vice versa. She won't be there to hold Tessa's hand when Brian and I are gone.

And, I'm mad that she won't get to experience all of life. I'm sad that all she got to know was my womb. Even if she had lived, the Trisomy 18 would have kept her from living a full life, but I might have been able to show her more love than what she was able to get while she was here. When we weren't able to say goodbye early, I was secretly hoping for a few minutes with her. I didn't want her to suffer, but I wanted her to hear that I loved her. I think every baby should have that chance.

Why I am doing this

Many people have commented on brave and strong I am to be blogging about this experience. I have even had some ask me why I am sharing so much personal information.

While sharing this journey has been very hard, I feel like no one talks about infant loss or babies being stillborn. When you lose a child at birth or a few months before, you join a secret society no one wants to be in. However, you are stuck there, and the only ones who want to talk about are the ones who have actually been through it. Other people just tell you not to withdraw from life or that you can always have another baby or it was meant to be. The people who are in the secret society know exactly what to say.

I want this whole secret society to end. People need to know their words can cause pain. They need to know what they should and shouldn't say. I don't really think they mean to be insensitive, but most are. I want people to be willing to hear about my Jenna, to know she lived and moved and was loved. Why should people look at my funny when I start to talk about her? She was my daughter, and I loved her.

My other reason for doing this is that I don't want anyone who is going through this to feel alone, especially those mothers and fathers whose child has been diagnosed with Trisomy 18. When I first got the diagnosis, I felt like I was the only one around. I had never met anyone who had a T18 baby. I wanted to find others who had been through what I had. I'm actually hoping to connect with people who have had Trisomy 18 babies through my blog. I would love to hear comments from you.

So, I'm going to be sharing my deepest darkest pain and most of my thoughts. I might even share details most people would not want to hear. However, I think those details and my pain and thoughts will help someone else, so I'm willing to forgo my privacy to do so. I don't want all of this grief to be in vain.

A hard time today

I should have know when I woke up to rain this morning that it would be a bad day. It matched my mood exactly. I didn't want to go back to work today (or this week), but I was needed and felt like I was letting people down.

Tessa is out of school for the next week for the National Tennessee Walking Horse Celebration. It's held here every year, and the school system has always closed for it. She has gotten used to me being home and didn't want to go to the babysitter. She dawdled around so much that it was almost 9 a.m., when we left.

I took her to my aunt's house (she babysits for us), and when she asked me if I was ready to go back, I just started crying. I couldn't help it. One of the parents who dropped their little girl off gave me a hug, and my aunt hugged me, too. She told me I was strong and would get through it. How come I don't feel so strong when everyone is telling me I am?

I cried all the way to work and wanted to cry as I was walking in. I don't know if it was because today was two weeks since Jenna was born or if its because I was still pregnant the last time I was at work. I knew Jenna's diagnosis at the time, but while she still alive and moving around inside me, I kept a little bit of hope that we would have a miracle, that maybe, just maybe the amnio was wrong. Also, every morning Jenna was most active, while I was turning on the computer and getting ready for the day. Mostly, it was because of the Sun-Drop. I didn't even get one this morning; it would have just been too much.

My friend who works in advertising cut out Jenna's obit and put it on purple paper and laminated it. I teared up about that. I did really well, too, even so far as typing birth announcements. Those are going to hurt for a while, I think.

On the way home, I heard the Michael Buble song "Home." For some reason, it makes me cry and think about Jenna. Maybe it's because I want to go home, back to our home before we found out our child had Trisomy 18, when we were excited about the pregnant and looking forward to bringing another child home. I wish I still had those feelings.

Follow-up appointment with the doctor

I went to the doctor today for my check-up after giving birth. It was really hard for me in the waiting room with all those pregnant women. I just grabbed a magazine and buried my head in it.

I had lost almost 20 pounds since my first appointment in May. I know it's because I haven't been able to eat as much as I used to. I get hungry but fill up about halfway through. I hope to keep it up because I want to lose even more weight.

My uterus is back to its regular size. I talked to her about my problems sleeping, and she gave me a prescription for Ambien. I'm not supposed to take it every night, but I really need it. It takes me forever to get to sleep and then I wake up several times during the night. I hope the Ambien helps.

We also talked about trying again. She wants us to wait two to three months before we try to give me a chance to heal, both emotionally and physically. We are supposed to use birth control until then. I had to giggle a little when Brian and I were in Wal-Mart this afternoon trying to decide on a type of birth control. We both hate condoms, and I can't take the pill because it makes me gain weight. That won't work while I'm trying to lose. The thing is, being intimate is really the last thing on my mind right now. I hope as I go farther through my guilt, it will come back.

Anyway, we have decided not to try for the next two months and try to prevent it. The third month, we will try on our own. If/when that doesn't work, we will try Clomid. I hope it works quickly. I'm scared we won't be able to get pregnant again. She also said I would be considered high risk, and we would have special testing in the first trimester to see if there is a problem. It is called the PPAP test and the Nuchal fold test. If there seemed to be a problem with that, we would do a CVS, which would let us know without a doubt if there is a problem. I just hope nothing goes wrong when it happens.

Because my editor called today asking me to come in this week, I'm going to work two days this week and go back full-time the next. I'm not really sure I'm ready, but I'm going to give it a try.