When Enough is Enough

I’m an amputee.  A vital part of me is missing.  People can’t see so they expect me to function normally.  That’s not possible.  I’m handicapped.                 

 I’ve been asking myself if I can handle being handicapped forever.  Unlike a real amputee there are steps I can take to retrieve that missing piece.  Some must ask when is enough, enough?

                That is the big question for an infertile woman.  When do you stop and say, “I won’t do this to myself anymore.”  I realized the odds were so small that I would ever conceive a healthy baby.  I’m not a candidate for IVF because I have no problem getting pregnant.  It’s staying pregnant that is the problem.  It’s not my womb that’s broken.  I can carry a baby but the genes in my eggs are all wrong so the babies have birth defects.  I can sell my soul to afford a pre-genetic diagnosis on my eggs but they likely wouldn’t find one with my translocation.  Adoption isn’t right for us right either.  There is a lot that goes into that process and my husband and I aren’t ready to handle that kind of rollercoaster yet.  Even a snowflake adoption is pricey.

                The least stressful reaction is to be sterilized.  Insurance covers it 100%.  So I opted for that.  My referral letter came in the mail yesterday.  The consult is in March.  I imagine that means the surgery will be in April.  I’m officially never having children of my own.

                I was relieved to be making any kind of decision at first.  I read that for every choice like this there is a grieving period but I was more invigorated.  Now it’s sunk in.  I’m never going to raise children and that is hard.  It’s impossible to explain.  There is this ending to all things but what will mine be like?  Am I going to be free to bring joy to the lives of others so I can find meaning in this emptiness?  Am I going to bury my head in the sand and die alone?  Will I do what’s best or will I jump off the rails?  Can I be an activist for other women like me?  Will I be able to stay married and never have kids?  It’s been 5 years; does this ache ever disappear? 

                I found a good check list that helped me understand I’m doing the right thing and I wanted to share in case any of you are wondering if enough is enough?

o   How will you recognize when you have had enough? Watch out for some of these factors:

• Do you feel emotionally and physically tired all the time?
• Do you feel sad or depressed much more than you used to?
• Are you finding it harder to be optimistic about your next treatment?
• Do you glumly anticipate a treatment's failure in order to fend off disappointment?
• Are you finding it harder to follow the doctor's instructions?
• Has your relationship with your spouse started to deteriorate even further? Are you fighting a lot more?
• Do you find yourself wondering why in the world you are doing all this?

    There are positive reasons to consider ending treatment too - you don't have to wait till you are a wreck before making this decision!

• Are you beginning to focus more on the child, but not your genetic contribution to the child?
• Does the idea of stopping seem like a relief to a lot of your troubles?
• Are you directing attention to other areas of your life - and enjoying it?
• Do you feel proud of how hard you tried, and don't feel the need to do any more?
• Is your curiosity about alternatives increasing?

The whole article is located here:  http://www.drmalpani.com/book/chapter29.html  I highly suggest you look at it if you are considering not having kids after trying.  It’s for IVF patients but I was able to get a lot out of it as well.

I don’t expect to be alright for awhile.  I don’t want to hear about or think about kids.  I think that is reasonable and understandable.  I have been thinking so much about infertility and not having kids.  Facing that is tough.  It’s a big decision that took 3 years to make.  It's like fading into the tapestry sometimes.  It’s a big decision for me but not to the world.  The world sees worse things so this problem is not that bad.  I’m sucking in air to keep the tears at bay.  How can the whole world not see that this is a travesty? 

I can only hope I heal sometime sooner rather than later.

The Beauty of Photography

                I love Photography.  There is something raw about finding that perfect angle with that single expression.  You’ll miss a thousand perfect expressions with your camera but if you are fast enough it’s like capturing a soul.  Since the dawn of photography people believed our spirits are in our photographs. 

It’s how we preserve a moment in time when we don’t want to forget milestones.  Cameras are our medium.  They are there for every graduation, wedding, even crime scenes so we don’t lose that proof these things happened.  Every person leaves their mark.

The Victorians got it right.  You went to a photographer so you could remember.  If a child died everyone would pose around them and the photographer would make memories.  That was the only photo most families had.  When people lived too far away to come to the funeral the family sent them this picture.  People hung these in their homes.  It wasn’t morbid or sad.  It was a family cherishing a beloved child in the best way they could.  The world has never forgotten.

After the 1930’s we’ve moved away from home viewings and family cemeteries’.  But parents have started bringing these traditions back.  As our ancestors we take photographs to memorialize our children.  There is a whole non-profit out there, Now I Lay Me Down To Sleep , to take photos of stillborn, miscarried and children who die young.  It’s not morbid or sad.  I have a beautiful Hallmark frame holding a NILMDTS photo on my wall.

Some people look at this as a shrine.  If that is the case then you should never display your dearly departed’s things.  Some people may think it's right to forget.  I am not one of those people.  All of those items bring back memories.  I don’t worship them.  I hardly even notice them anymore.  Sometimes I look at them and I remember I am a Mom.  I do have kids.  Someday I hope to meet them. 

I forget how unsettling this is to other people.  I don’t invite people to my house.  Even if I had a big house I’d have to be careful who came over.  I forget what it’s like on the other side.  In High School Mom’s friend had a baby die.  She hung a portrait of her stillborn daughter in the hall by the front door, in a place of honor.  People thought she was sleeping unless they knew what happened.  I was ashamed to be terrified of walking into that house.  I am afraid of death so seeing an image of a family with their sick or dead baby is terrifying.  That doesn’t make it ugly.  It’s beautiful.  Now that I have my own memorial I can see the difference because I have that love.  How can something be scary where there is so much love?

That is what you can imagine when you see these memorials.  It’s uncomfortable for you because it stands for the death of a child.  That family gets to live with the impact their son or daughter had on them.  It’s a privilege.

Continuing your Pregnancy with a diagnosis of "Incompatable With Life."

I want to know more stories of people who chose to continue pregnancies and why so I’m sharing my perspective.  If you want to share yours, that’s awesome.  If you want to have a political argument, go somewhere else.  Here is my reason I chose life.

Before I had any idea I’d have so many issues with pregnancy I thought abortions only happened when someone was raped or when a teenager or selfish career woman chose to put themselves first.  I thought this because that is all you find when you do research.  You don’t hear stories about why women chose life or chose abortions unless they were in some way unprepared to deal with caring for a new life.

In passing I’d heard that sometimes women experience stillbirths but they are so rare that you shouldn’t worry about them.  I thought that was something that happens to other women; the rare freak thrown into society.  I’ve always known I was a freak, just not a freak of nature.

When I found out my unborn baby was going to die from a laundry list of birth defects I had no idea how to react.  I was too shocked to tell the doctor on the first day but I would never choose abortion.  I know that now with certainty.  Before that day abortion was always hypothetical.  I can say with certainty that I would die before I would have one because I’ve often daydreamed I have the opportunity to give up my life to save my baby but that’s not reality.  My views have changed.  I know what empathy really is now. 

There are other freaks of nature out there so why don’t the pro-choice or pro-life people talk about our stories?  The closest I’ve ever heard someone coming to discuss someone like me is on the pro-choice side.  I’ve heard pro-women groups and people discussing what happens when you receive a diagnosis of, “incompatible with life.”  It’s a no-brainer.  Of course you would get an abortion.  Who wants to go through 9 months of carrying a baby who’s fated to die?

It’s a little harder to tackle that one and be pro-life.  I can’t stand in front of a women going through that kind of pain and tell them they have to choose life.  That is the real issue.  They want this baby and love this baby.  They are suffering and you know there is nothing you can do.  There is no pain management for the unborn.  There is only perinatal hospice to assure you that they will rest easy, if you are lucky enough to have a perinatal hospice.  So, you have the pro-lifers telling you a baby can feel pain as early as 8 weeks and you have a diagnosis that sounds painful.  Your doctor tries to console you by telling you they can’t feel pain but that isn’t what all the pro-life groups are showing you.  Who do you believe? 

It’s a harder road to choose death.  You want to do what’s best for your child.  I can easily see how you can choose abortion.  It is so glossed over.  I get the impression you could easily be shunned by both societies.  If you have an abortion you are not eligible for most baby loss support groups.  If you have an abortion the idea is that you grieve less and start over.  You need the brand of support from people who believe life begins at conception.  You try to get it from people who don’t.  I heard a heartbreaking story from a woman years ago who was suffering.  She aborted her wanted baby and was forced to go to an abortion support group when what she was going through was not what those women were going through.  What she needed was some assurance that she did what was right for her child but no one would give that to her the way she needed.  She heard more about regret and guilt from Christian groups than the grief of having a baby die.

A pitfall to the pro-choice movement is the MISSING Angels Bill.  When someone claims to be pro-woman and they deny the passing of this bill they are hypocrites.  My stillbirth has no place in your politics so get your sexism out of my business.  When this bill is voted down it says to me people are afraid to give me the right to acknowledge my child because it might have the possibility of denying another women her right to choose.  Her right to an abortion is more important than my right to a birth certificate.  32 states have passed the bill and I haven’t once heard someone in the pro-life movement use a birth certificate as a reason to overturn Roe Vs. Wade.  I live in Utah and not my native Illinois when I had my stillbirth so I have my certificate. 

Don’t think that the Christians get off so easy just because I get angry with the pro-choice movement.  They push their morals worse than anyone and they play the “hell” card every time you decide it’s ok to walk away from these choices.  You are separated from God if you can empathize with a women who chose to kill her baby.  My experience is that Christians are the most judgmental of your personal choices.  If there is any group who thinks my sex life is their business it’s them.  They don’t even have to tell you what they think.  They just tell you that they are praying you’ll have a baby and you know what their opinion is.  Some things are not black and white.  Having a genetic issue that would cause stillbirth or miscarriage 99% of the time is a grey area and I have the right to choose if I can handle trying over and over for that 1% shot. 

I took the third path.  I refuse to call myself pro-life or pro-choice because people on both sides have personally offended me.  I stayed pregnant.  I got to know my baby.  I was grieving and went a little crazy but I did the right thing for me.  I don’t regret it.  I’ve heard more women talk about how thankful they were for the time they had with their unborn child than not.  I’m thankful I had the opportunity to give birth and stay pregnant for as long as I did.  I wrote about it and was published in A Gift of Time.  That book is there to help women know they have the right to stay pregnant if they want to.  There doctors may tell them they have no choice but to abort.  Their church may tell them they have no choice but to continue but this book is a guide to help you choose what is best. 

You have to understand that a lot of doctors are so smart with the physical diagnosis that they are socially stupid about the mental effects continuing a pregnancy would have on a woman.  If you can forgive your fellow parishioners’ ignorance you can forgive your doctor.  They assume terminating a pregnancy will be easier on a person psychologically.  That idea assumes that love grows over time.  A mom with a 2 year old can’t love her child as much as a Mom with a 20 year old, right?  Wrong; any idiot can tell you love doesn’t work that way.  I was so bonded with my baby before he was born that I think about him every day.  I think about all my babies every day and will for the rest of my life.  I can’t replace him with another baby any more than I could replace my husband.  If someone dies you feel that grief.

What I wouldn’t have given for just 10 minutes with my children.  But it would never be enough.  I can’t barter with God for time.  I would always want more.  I got what I got.  Now, I’m far enough out from my loss that I can be thankful some people do get days or years with their children.  I can be thankful that people have been pushing for equality even in such an ignorant society.  I hear things in the news about people honoring their stillborn and miscarried babies and I can be in awe over how far we’ve come in women’s rights.  It wasn’t that long ago that your baby would be ripped from your arms before you could ever see them.  Now you can give your baby a bath, take pictures, have family visitations, funerals.  You name it and they will probably consider it.  That is amazing.

I had hope that my babies would defeat the odds but they didn’t.  What I got instead was a gift.  I got them in my life for as long as I could keep them and that is more than a lot of people get.

Do you have kids?

Look on any infertility forum on any given day and within the first five pages there will be a topic on people asking us about kids. It’s uncomfortable because being infertile is knowing you are broken. Most people are broken in some way. We have bad backs, knees, personalities and everything else. This is one of those bad things that for some reason brings shame.

What is small talk to you is a nightmare for us. When we tell you we don’t have kids we just shared the most private secret we have. It’s not possible to get much more intimate without getting naked.

Yet, according to the poll IS IT RUDE TO ASK A STRANGER IF SHE HAS CHILDREN on the parenting site lilsugar.com 63% of people who’ve voted so far believe it’s perfectly acceptable to ask someone if they have kids. The poll is skewed by location. If it were on an infertility site the numbers would be much different. To be fair it would have to be turned into a scientific study. I looked on Ebesco Host and haven’t found anything similar to what I’m talking about.

In years past I’ve been offended when people ask me if I have kids because it puts me in a tough spot. I have had kids. They didn’t make it. Do I admit that to a stranger? Do I deny their existence? Denying them is painful for me. On a more basic level I don’t have kids at home. Infertile people every day have to decide to say no and risk being probed with inquiries about starting a family. Or they can cut to the chase and tell you they are infertile. Then they risk being asked about adoption or IVF. Unless a person is recently diagnosed they know their options. You aren’t telling them anything new and you have probably hurt them by reminding them what a nightmare the whole process has been.

Most times I tell people I don’t have kids. It makes an awkward moment more comfortable for the stranger I’m talking to. Small talk isn’t supposed to be deep. But lately I’ve been thinking it would be best to air my dirty laundry. People are always going to say stupid things so why should I be the only one feeling awkward? It’s not their problem so how could they know its offensive to butt in? People are going to keep asking so I have to get used to responding. Eventually I’ll be the one who's comfortable telling them I’m infertile and they will be the one that's uncomfortable hearing I’m infertile. It’s nothing to be ashamed about so couples shouldn’t have to be.

That doesn’t mean it’s ok to ask. It is rude and people should know better. Unless you have business knowing you should never ask a person if they have kids without expecting a legitimate answer.

REDBOOK Features Invisible Pain of Infertility

I'm so pleased today. More and more infertile couples are speaking out about their issues. There is now a plethora of videos on Youtube thanks to REDBOOK. If you want to hear more people trying to speak out you need to visit this website and watch some of the videos:

http://www.redbookmag.com/health-wellness/advice/infertility-video-series#v1212096718001

Courage

Until recent events in the news I would have said society is more sensitive but I want to give people some credit. It took most my life before the stigma on AIDS nearly vanished. When I was young you never saw people empowering cancer patients with boob scarves and marathons. Death is the hardest pill to swallow. Kids don’t die first.

Most people can’t imagine losing a child. I can only think what it must be like for you. If I had living children I believe it would terrify me to picture them dead but that is what every bereaved parent is asking you to do when they ask for support. We are thankful you don’t know what it’s like.

How many of you go beyond saying how awful that is to closing your eyes and seeing your kids in the same situation? People have a self-preserving nature. We often turn tragedy into humor even at the expense of others. That is the point of dead baby and MADD Mother jokes.

That leads most victims feeling alone. The consensus is that you shouldn’t talk about your loss. It’s inappropriate to discuss publicly. Given the nature of the loss it’s also wrong to offer condolences. Good Housekeeping recently reported that unless the bereaved parent is vocal you shouldn’t even mention their loss. This proves how ignorant we are. Articles in major magazines further denial. They give everyone who reads an excuse to ignore someone whose child died.

As a bereaved parent you can’t tell how someone will react. Most of us learn to protect ourselves by not sharing. We deal with shame at denying our children ever existed because we can’t handle the comments you might make if we speak first. It becomes our job to take your words with the intent they were given. That can be frustrating but it’s better than silence from you. There are a plethora of websites that will tell you exactly what to say. Here are three good ones, “I’m sorry for your loss, your family will be in my thoughts and I don’t know what to say.” It’s okay to admit you don’t know how to react.

It’s not easy to be an advocate for our losses in life. Trauma is pain. How do you turn that into something good? You make the way easier for people who come after you. People don’t change their minds by watching sensationalism in the media. They change their minds when enough people stand up and tell them they are wrong. That is how to reform public displays of stupidity. That is what the two million women and their families need to do. We have the courage and we have the ability. This is possible.

Discrimination

Last year I interviewed a woman who claimed to being harassed at work. Her loss was a few months old; still raw. Her daughter died in childbirth so she never got a birth certificate. Not every state has passed the Missing Angels Bill to allow stillborn birth certificates.

For those of you who never experience stillbirth I want to shake the cobwebs off the mystery. Not to be rude because I don’t think people know. Giving birth is physically same if your child dies. Most times doctors won’t do a C-section since the only danger is to the Mother. Hours to days later someone like you gives birth and has to say good-bye forever. They have epidurals. Their milk comes in. The same hormones that cause post-partum depression are in these mothers as they are in you. If that isn’t giving birth I don’t know what is. To date, no one I’ve met is thankful they didn’t get a birth certificate.

Add to that the cost of all those baby supplies they won’t use and the fees surrounding the funeral and you have one hell of a financial hole. You don’t have a tax write-off to look forward to. Most insurance companies do little to help. You can’t insure an unborn child.

This is a lot to process. Most parents don’t get the paid time off they deserve. Americans don’t know it takes months for the initial shock to wear off and real grieving to set in. Some expect you to be your old self when reality is only setting in.

This woman I questioned showed up to work with a photo. The Dugger family recently had similar photos taken by the non-profit Now I Lay Me Down To Sleep. I imagine there are millions with similar photos; including myself. This was her first kid and everyone else has family pictures displayed. She thought nothing of tacking a few to her peg board.

Not long after she found out people went to HR over her family photos. They didn't want to see it. There were numerous meetings with upper management and HR to find a way to legally make her take the photos down. When they did come to her she’d been at work for a month. No one was talking to her. No one offered condolences or sent flowers because there is something different about losing a child that makes it unacceptable to acknowledge. She was told she had to take down her family portraits or she’d lose her job.

This is what it means to blame the victim. If you’re doing something to make yourself feel comfortable at the expense of others this is discrimination. It’s time to end the silence.

Heartless

It’s because you experience horrors that you can see beauty. I never expect joy but I can recognize it in others because the grass is always greener on the reproductive side. No matter how I wish it weren’t true I can describe how it feels to be fruitless. As a military wife, I learned when someone you love is far away half your heart is missing. I can’t get my children back so I have nothing to give away.

When my husband asked me to expect less and do more my first question was, “How?” My dreams are crumbling and I’m still sulking about that. He asked me again a few weeks later and I knew it was important to try. Not long after I sat in a room with a foreign breed of women. Every one of them has kids but me.

That experience is my new normal. While supporting military families I talk about kids. When visiting a friend I’m playing with them. On the phone with family or in a classroom that is what people talk about.

Though I may never be a Mom I hope to surprise you. The things I am learning are useful. People have trials and they suffer through them alone when the answer is community. Society can’t be aware if you never talk. Babies die and parents aren’t vocal. That is worse. Two million women and their families experience the death of a baby every year. About 750,000 women will get breast cancer every year. This is not a taboo topic. All of us need to stop being squeamish and end the excuses’. There is no reason any woman should feel guilty or suffer judgment through infertility, pregnancy or child loss.