A child's grief

The other night, I sat down with my SHARE newsletter, which is for parents who have lost a child through miscarriage, stillbirth or infant death. It had a special article focusing on a sibling's grief, which was really fitting because I had been thinking of Tessa's grief lately.

When we found out Jenna was sick, I worried and wondered how Tessa would take it. She had already lost so much in the year before when Granny died and her preschool friend was killed in a fire. I'm a worrier anyway, and I was afraid of how she would react.

She cried when I told her and asked a few questions. In some ways, she seemed a little relieved, but I found out a little later it was because her older cousin had overheard us talking and thought I was sick, so Tessa thought I was the one who was ill. But, later, when she realized Jenna wasn't going to be born, she was really sad. Everytime we saw a sick baby on television, she asked if that baby had what Jenna had. I've tried to explain Trisomy 18 to her, but chromosomal disorders are hard enough for adults to understand, so it's next to impossible for a child of five.

After the disastrous trip to Atlanta and the two nights in the hospital when Jenna was born, Tessa was a little clingy and the whining started back. I thought it would get better with time, but it really hasn't. She also has been throwing a fit every morning before school and wants to sleep in our bed instead of hers.

The other night, we were laying in the bed, and I asked her why she wanted me to lay down with her. She said she was afraid. I asked her what she was afraid of. She got really quiet for a minute and then said with tears in her eyes, "I don't want you to die. I want you to live to be a 100."

I realized that after losing so many people this year, Tessa is scared to death I'm going to die. It's the reason she wants to be with me at night, and it's the reason she throws a fit about going to school. She wants to be with me as much as possible because she doesn't know how much longer I'm going to be here. I assured her I wasn't going anywhere anytime soon and me dying was the last thing she had to worry about.

She stayed in her bed all night that night, and she didn't cry about going to school the next day. Now, I can't honestly say this is going to be the fix for all of it (she didn't go to school Thursday or Friday due to a really bad ear infection and upper respiratory infection), but I think it's a step in the right direction.

I'm just wondering if I focused so much on my own grief that I forgot about hers. Grief and loss causes a lot of fears, even in adults, so how can it be any different for children?

I am selfish, seriously?

I normally wouldn't respond to a misguided comment left to one of my blogs, but this one came so far out of left field that I had to. She accused me of being selfish because I thought a miscarriage was somehow less of a loss than a stillbirth. Anyone who read through what I wrote can see that isn't what I meant, although to be honest, when I first lost Jenna, I did feel that way. I don't now. And, I think most people think a miscarriage is less of a loss than having a stillborn baby, which is why it bothers me when someone refers to my loss as a miscarriage.

I don't think a miscarriage is in anyway less painful than having a stillbirth. It hurts, it's awful, and there are so many things about it I could never understand since I've never experienced one.

But, to say I'm selfish? Seriously? I have shared my story hundreds of times so that women could know they aren't alone, even though some of the things I've written here are very personal, and I'm normally a very private person. I have a google alert for Trisomy 18, so that I can comfort those families who are going through what we did last summer. I am volunteering my writing services to the Trisomy 18 Foundation to help spread awareness of this disorder.

I am campaigning to change the abortion laws in a state that is very pro-life to keep another family from having to make a choice they don't want to, setting myself up to losing friends and family over this. Some people may hate me over this, but I am selflessly doing this to keep others from the pain I went through.

If all that makes me selfish, then so be it. I'm sorry someone took my post and twisted it around to make me look selfish. That wasn't my intent behind it. I am so sorry for anyone who experiences a loss at any gestation, and I don't believe one hurts anymore than any other.

Pregnancy Loss Terminology

The other night, I was flipping through the channels, and I came across a movie showing a pregnant woman having an ultrasound. The doctor performing the scan said, "Did you talk to anyone after your miscarriage?"

The lady looked up and said, "It wasn't a miscarriage. She was stillborn. Anything after 20 weeks is considered a stillborn."

I almost cried when I heard that because those same exact words came out of mouth about two months after my loss when I went to see my endocronologist about my PCOS. The nurse asked me how I was doing since my miscarriage, and I answered with the above. I've heard others who have experienced a similiar loss say the same thing.

This made me wonder why we are so hung up on the terminology of pregnancy loss. Anything before 20 weeks is a miscarriage; anything after is a stillbirth. If a baby is born breathing at 22 weeks and above (I think it's 22 weeks), it's considered fetal demise due to premature birth. They are all losses, so I wonder why it matters so much what we call it.

I know why it mattered to me at the time. Honestly, I knew then as I know now that a loss is a loss no matter what stage it happens, but I felt like calling Jenna's death a miscarriage was negating everything that happened to me. At the time, I felt like a miscarriage was a lesser loss than what I went through with Jenna. When a person has a miscarriage, they don't have to make a decision about what to do with the body, writing an obituary, making plans for memorial service, etc. Most women who have a miscarriage never get to hold or see their baby. I think another part of it is that by calling it a miscarriage it was making Jenna less of a being than she actually was, if that makes any sense, and it just seems disrespectful to her.

Since that time, I've come to know that a loss is still a loss and hurts no matter what stage you are at in the pregnancy. But, I still have trouble not correcting someone when they say I've had a miscarriage.

Making a change in wording

Since I first started getting this law changed, I've differentiated between terminating for a poor prenatal diagnosis and for a fatal one. I knew in Tennessee I would never get support if I worded it "life of the mother, poor prenatal diagnosis and rape and incest," because many believe you should only terminate if the condition is fatal.

But, I posted on a discussion board I frequent, and someone I have great regard for gently pointed out that by doing so I am offending those who terminated for a non-fatal poor prenatal diagnosis. I wouldn't want to do that. Believe me, I know they are hurting bad enough without them taking what I said the wrong thing and thinking I'm condemning them when I'm not.

I fully believe that anyone who receives a poor prenatal diagnosis has to take everything into consideration and make the decision that is right for their family, whether that is to carry to term or say goodbye early. I don't believe anyone has the right to tell that family what they have to do in this situation, because as I've said, it's all about making healthcare choices for their children.

If I've offended anyone here, please let me apologize. That is not my intent at all. From now on, even in correspondence with those who could help me change the law, I'm going to use the terms "poor prenatal diagnosis." No one should be forced to make the wrong decision for their child when it comes to healthcare, and this includes the unborn with a poor diagnosis.

Feeling frustrated

I received an e-mail yesterday from Rep. Joe Armstrong's assistant, who told me that because of his other duties he doesn't feel as though he has the time to do the research needed to be the one to sponsor this legislation. His assistant said he was contacting other representatives who might be willing to do so.

She gave me the name and address of a Planned Parenthood lobbyist. I e-mailed her and told her my story. She said what happened to me is an example of what happens when laws hurt, not help, and that my idea is a common sense one. I agree, but she said there was very little support in the legislature for it.

I just don't get it. Many pro-life people I have met (including one of my best friends, who is staunchly pro-life and only makes exceptions for life of the mother and fatal pre-natal diagnosis, not even for rape and incest) believe the law should have exceptions for cases like mine and health of the mother, whether they believe in it for rape and incest.

I was talking to a friend yesterday, and she said that it really isn't about abortion. It's about the end of life care. Her saying that reminds me of my comparing it to turning off the machine for a brain dead or stopping care for a terminally ill patient. I wish I could make people see that in cases like mine it's not about abortion at all. If I could make the legislation see that and know I wanted to end my pregnancy due to the love I felt for my child, not for selfish reasons, surely they would agree with me and add an amendment to the law. I'll say it again. This isn't about abortion; it's about allowing a parent to make healthcare choices for their sick unborn children.

Finally

Eight long years ago, when George W. Bush took the oath of office, I was not very happy. I did not believe he held the right to have that position, as I believed (and still do believe) that it rightfully belonged to Al Gore, Jr., the man I supported in the 2000 election. When he took the office again in 2004, I wondered how the American people could be so stupid as to elect that man again. I cried when he won again, and I cried when he took the office.

In those eight years, he has only proven what I knew in the beginning. I questioned his intelligence at every turn, and he only showed me and most of my fellow Democrats how low is IQ was. The latest thing he did was sign into effect a law that would allow hospitals and doctors to not perform procedures they felt was morally wrong, including abortion and prescribing birth control and the morning after pill.

Sound familiar? This kind of law is the one that exists in Tennessee, the very law that kept me from making healthcare decisions for myself and for my very sick, unborn child. A man I never supported in the first place signed this law into effect for the whole country. I shudder to think every state in the union will go toward what Tennessee has, not allowing abortions in a situation like mine.

Hopefully, President Obama will overturn this law. I want it gone, yesterday. However, I am still eternally grateful President Obama won (I've supported him since I saw him speak at the Democratic National Convention in 2004), and I don't believe it is humanly possible to be any happier than I am that Bush is out of office.

So, it is finally over. Bush's "reign of terror" is over. It's the end of an "error," and no that's not a typo, it's exactly how I feel about Bush's entire presidency and the fact he was allowed to take office in the first place. I actually feel like doing a dance to celebrate.

Book Idea

I have always loved books of inspirational stories, not necessarily Christian ones, but just stories of people rising above heartache and adversity to make a difference in the world. I've been thinking over the last few days that I want to write a book about parents who have lost a child to Trisomy 18 and have used that heartache to change the world.

I'm using what happened to me to make sure no other parent has to go through the awful experience of being told they can't make a choice in the care of their unborn child. I know others have helped build a public garden, held races and other fund-raisers for the foundation or built playgrounds. These are all ways the parents have made a difference in honor of their child.

It would also be a way to get the word out about Trisomy 18. I was surprised to find out hardly anyone had heard of it when Jenna was diagnosed. I even did a search on Amazon for books about it, and I hardly found anything at all. We need some books out there to help those who are going through it.

This would be a way to tie together those who carried to term and those who said goodbye early. It would be a way to prove that no decision is really the best way, except for each individual family, because the making a difference is not limited to just one of those decisions.

If you know of someone who has experienced Trisomy 18 (or if you have), please leave me a comment in the comments section about them and what they are doing. If you can direct them to this blog so they can see what I am doing. I would love to hear from those who are making a difference because of this loss so I can see if I'll be able to put together a book.