A Light of Hope for the Future

I've heard debate on whether or not we should open a dialogue with people on infant loss and infertility.  People defend the way things are because, “No one likes to talk about death.  That’s the way it is and that’s the way it’s going to stay.  You can like it or not like it.”  People don't put it so bluntly but that is what they mean.  I usually come back with some remark about how people have gained awareness for Breast Cancer through telling their stories and in that way becoming a beacon of light for the advocacy movement.  I mention Breast Cancer specifically because it’s now so prevalent in our society.  It went to an overnight boom of advocacy where you could find pink ribbons everywhere in October to today where you can find pink ribbons everywhere all year round.  I've always said that is the kind of advocacy I want to see for families struggling without their children.  They deserve nothing less.

But let’s put that all aside for one second and ponder death.  Are we really talking about our children’s deaths?  In a literal sense of course we are.  We want the world to hear what happened to them and to us as a result.  That helps us to heal.  More than that, we are talking about their lives.  We are bringing up all the memories of what we had, what was, will never be.  We are telling the world that they matter.  We are telling the world that we shouldn't have to prove that they matter.  It should be obvious to you because it is to us that losing them is the most tragic kind of loss and in that way should never happen to anyone else.

When I used to hear people tell me that I should keep my loss to myself I used to be ashamed.  I was ashamed to feel like a Mother.  I was ashamed I wanted to share my children.  I was ashamed of who I was and how I could never go back to who I used to be.  Now when I think of all the women who feel ashamed of the need to share their kids I get frustrated.  If we don’t have an open dialogue we can’t ever create a positive environment for these families.  What they need is a community who can and will raise them up in solidarity.  They need more than just other people who have had similar experiences.  They need the empathy of the whole world to see how tragic this loss is and to recognize it for what it is rather than to attach some kind of political agenda to what they have experienced.  They don’t want or need people to turn their heads away because they, “don’t know what to say.”

Mostly, when we talk about our children we are not talking about death.  We are telling the medical community that we won’t be put on the back burner for “more important causes.”  We are demanding that the few times this will happen in the future that there always be answers as to why from every post mortem.  This means we find the 26,000 stillbirths, 24,000 infant deaths, and 1 million miscarriages in the US in a year unacceptable.  To put this in perspective there are almost 4 million births in the US per year (http://www.cdc.gov/nchs/fastats/infant_health.htm).  We are talking about hope!  We are raising the torch for the women who will come after us.  We are asking that they have a community of love.  We are saying that the next generation will have much fewer losses and that the generation after then will have even less than that until infant death becomes a rare occurrence, not the commonplace one it is today.

Someday the world will recognize the importance of our sacrifice the way they recognize the survivors of cancer.  You will see cheesy Lifetime movies and blue and pink ribbons on every corner.  We are fighters, women and you don't come between a Mom and her cub.  We will see a brighter and better future through our painful advocacy and it will make someone else's journey lighter.  It may even save a life.

Will We Prevent Infertility?

Will we be able to prevent or at least predict infertility soon?  God, that would prevent and heal a lot of heartache in the world.  Losing kids or not being able to have them is a pain I wouldn't wish on any person who didn't choose it.  I've experienced too much in the past few years all due to infertility.

In case you are new to the blog I have a Balanced Translocation (BT for short).  In medical terms that means one part of Chromosome 8 and one part of Chromosome 15 switched places.  All the information is there so I’m 100% fine.  If I never chose to have kids I never would have realized there was a problem.  I’m not missing or adding any genetic material. 

The problem comes when I try to have kids.  I can get pregnant just fine.  That gets a bit frustrating when the infertility material is usually geared toward women who are having issues becoming pregnant.  When I get pregnant the eggs pass on a genetic code which is not in order.  Part of 8 is on 15 and vice versa.  So my pregnancies have ended in losses because there are many genetic disorders that can’t sustain life.

I want you all to understand I wasn't sick.  I didn't have the high blood pressure or high blood sugar.  It wasn't an effect of alcohol or smoking.  My pregnancy was no where outside the range of a normal pregnancy in how I was physically.  There are no physical symptoms to diagnose a BT.  You can’t prevent this with any holistic diet or exercise.  No amount of Folic Acid is going to change the genetic make-up of the egg.  If the genes of an egg or sperm are out of order you lose information or add too much.  It’s like playing a game of Russian Roulette where the sperm has to hit just the right egg or else disaster strikes.

Since this is a genetic disorder you can be a carrier if you are related to me by blood, be that a cousin or an Uncle or a Great-grandparent you could be a carrier.  You could suffer multiple miscarriages.  You could have a high risk pregnancy and not realize it.  Or you could be proactive and get the blood test done.  You can be listed as high risk until you know you are safe.  The beautiful thing about some genetic disorders is that you can treat some things if you catch them early on. 

By the time I found out the sex of the baby I was discovering I needed specialists but it doesn't have to be that way for everyone.  For the rest of the time there were a series of professionals working with me.  They helped me make every decision.  Ultimately, it was that team who was there from the time I found out something was wrong to the time I found out I had the Balanced Translocation.  There were even more specialists I consulted when I wanted to know what this meant when it came to me ever having children.

In the end my choice was to be happy.  That meant not having kids.  I could have chosen Pre-implantation Genetic Diagnosis or chosen adoption but I wasn't prepared for any more loss.  It was all too much for me and I personally think it took guts for me to make the hard decision not to have kids.

But I don’t know where this BT came from.  Most of my family has been cooperative in getting genetic testing done when they have had their own kids.  I pass along my medical files in an e-mail.  They take it to their doctors who know exactly what to do.  It’s simple.  Thankfully, no one has had the disorder.  Most haven’t gone through what I've gone through.  That is wonderful.  But I still wonder when I see things like this:

“the new study indicates that at least 90% of the deleterious mutational variants in the human genome occurred in the last 200 to 400 generations (5,000 to 10,000 years).”

Read more: http://creationrevolution.com/2012/12/evolutionists-admit-that-most-human-mutations-occurred-in-last-5000-years/#ixzz2cwmhbpBO

Why does it seem so rare to see these mutations when they are so prevalent in our make-up?  Can we prevent these mutations to have the best chance of a healthy pregnancy?  Should we do all we can to prevent these pregnancy losses?  When I think of the pain every parent who lost a kid has had to go through I would love to see any advances to minimize pregnancy loss.  There are a whole plethora of questions I could ponder over these medical advances.

In the past year or so I've started to see the value of mapping my genes.  If we all become proactive we can cater our lifestyles not based off what diseases you remember second-aunt Nana had and the ones you think your Dad had but you’re not sure.  I think we all know how annoying it can be to try and remember the medical problems of our entire family at a random doctor’s appointment. 

We can swab our cheek and before you know it we’d know what diseases I’m predisposed to have.  I could use that to alter my life choices for the better.  As these genetic mapping kits get better I think future generations have the ability to prevent diseases they know they are likely to contract.  I would have loved to know it was likely I’d deal with infertility.  I could have prevented a lot of heartache.  How different would my life be today if I had known?

What do you think of sites like https://www.23andme.com/ where you can map out your genes?  I’m really thinking I’m going to do it.  If nothing else I could say I did something to help advance medical science since I know I have some pretty unique genes.

Don't Ignore Infertility

One in eight couples face infertility.  It should be a common topic with tons of easily attainable resources but no one talks about it.  Some people believe infertility is ignored because the topic deals with sex.  In case that’s true I want to do it first and move on. 

Sex.   Screwing.  Doing the naughty.  Legs up in the air or from the rear.  Wet and dirty; just like on the Discovery Channel.  It’s about the birds and the bees and we’ve got hungry eyes. 

Now that we prudes are all awkwardly uncomfortable I can continue with the less comfortable topic of infertility. 

When I started this blog I felt keeping infertility to myself was driving me crazy.  I hoped I wasn’t alone.  When I thought about letting go and braving the world I hoped I would find friendship.  I wanted to help pioneer a community that I could understand.

I had this great idea of being a voice for change.  I imagined a world where people would come together to lift us up in support.  I want to see every market selling pink and blue ribbons. 

Every October it’s a reminder for me the potential we have to share our suffering in a positive way.  You can’t leave the house without seeing pink everywhere, being asked to participate in 5k runs or donate to the Susan G. Komen Foundation.  To be fully supportive of women they need to add the color blue.  October is Pregnancy and Infant Loss Awareness Month.  Infertility and fertility need to be addressed.   My mission is to spread the message shamelessly.

To do that, I have to inform you that this is National Infertility Awareness Week.   To kick off the week I attended the Utah Infertility Awareness Seminar.  I learned so much and met some really wonderful people.  These are all people who want kids or wanted them.   They came together to share their frustrations, learn better ways to become parents but most of all to be in a room of infertiles that have hope.  They were there hoping for pregnancy, for surrogacy, for egg adoptions and fostering to adopt or dreaming a pregnant Mom would choose them.  When all else failed they were there hoping to find peace at the end of trying.   

These were women who have dreams of children stamped on their hearts and many have had to change that dream.  That is what one of the groups was all about.  Couples lined the rows to listen to Monica Ashton help them find peace and healing when you face the reality that your family will not be what you thought it would.   I sat there and listened to one woman discuss how she came to realize that a family of two is still a family.  So often we want to ask people when they are going to start a family but they do that when they get married.  They already are a family.

Even Isaiah had a laugh when Josh Redfern  got up and talked to us about infertility from a guys point of view.  Both of us sat there thinking, “That’s me he’s talking about.”  We hoped each other was really paying attention and it was because of what he said that we talked the whole way home, decided we weren’t done so we stopped to walk around the mall a few times until we had worked through so many things we felt we could never say because of that gender gap between us.  That is why I say I learned a lot.  He didn’t tell me he’d changed his mind but at least he understands why I act the way I do.    

We shouldn’t have needed to go to this big event to find a way to discuss how infertility affects us. Why is it so awkward to bring it up?  Why does he change the subject?  These were things I need to know.  Again, I shouldn’t have needed a seminar to learn answers.  I’m glad I went.  It was helpful but these are the things we could find easily if our culture was more open to sharing their infertility.  We so often carry the burden alone.  Would is surprise you to know that studies at places like Harvard have placed this stress on the same level as terminal illnesses like Cancer?  I’ve never been so upset or consumed with something in my life.

Those blue and pink ribbons are where we start the discussion.  We may not be able to say it out loud but we can pin this message to our shirts, our cars, our window decals, our web pages and our key chains.    Our friends who get it will know we stand for something.  That ribbon can lead to conversations that lead to change.  Your friends will be wearing those ribbons to honor you and in the years to come October will become the month of pink and blue.  People will know this is the week to recognize those who cope with infertility.

Making the decision to be open about my struggle is harder than I imagined but I have a ribbon I display everywhere I go.  My goal has become to be open enough to talk about my infertility in the same way as I talk about my marriage, or where I come from.  I don’t want to be ashamed of this integral part of who I am any more than I want to struggle with it.  That is why I have started the process of working with Resolve to open a support group in my area.  I'm still in training and we'll see where that goes in the weeks to come but it all starts this week.  This is the week I change my mindset from closed to open.  So hug your infertile friend, wear your ribbon and ask to start a discussion.  We can’t ignore infertility if we want to find the answers to end it.

To help you understand infertility you can check out these links below:

http://www.resolve.org/infertility101  (Basic understanding of the disease of infertility.)

http://www.resolve.org/national-infertility-awareness-week/about.html (About NIAW)