Thursday, August 29, 2013

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 (  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.

Monday, August 26, 2013

Five Days to Help Save a Grieving Family

We need to make our babies count because, "This is it.  We need to make it as big and bold and beautiful," as we can.  That's because our children MATTER.  They are our children.  Their loss doesn't minimize their LIFE!  We can create a beautiful memorial to honor what an impact they have had on us.

When I saw this video for the first time I realized how much this suited me.   I spent years being ashamed that I felt the need to shout out to the world how I’d lost babies.  I wanted them all to know my story.  The more I questioned my sanity the more fragmented my thoughts became.  I got angrier and more confused.  I built myself a hole where I was safe and the rest of the world was dangerous. 

I couldn’t face a world where no one knew I was a Mom.  I couldn’t face a world where I was supposed to be quiet about what happened.  It was a joke to assume I was fit to “live again.”  There was the immense pressure from some people to jump into living a life that can get stressful for normal people.  This was at a time where I was terrified to walk out my front door to get the mail.

Before you assume every parent who loses children is going to become a shut-in who rants to the world through a blog about imagined grievances, understand that I only recently discovered I’m Autistic.  It’s a common symptom under extreme duress for me to lock myself away from the world where I’m safe. 

That doesn’t mean it’s any less horrible for any other parent.  You all give your condolences and after six months you have moved on.  You are only barely tolerable of any special needs a grieving family may still have.  You celebrate the year anniversaries and then it’s in the past.  Some people understand but others expect parents to “go back to normal.”  You wonder why we talk about losing our kids all the time.  You want us to “get over it.” 

For me that pressure was too much.  I have a tendency to crowd please.  It’s a flaw I’m working on which stems from trying so hard to fit in when I have such a difficult time in social situations.  If I’m quiet and do what I know will make people happy I can often get away with not being quite normal.  If you met me you might wonder what exactly it is about me.  You won’t be able to put your finger on it and that would be the Asperger’s. 

That makes grief a complication for me.  Autistic people are more prone to bouts of Major Depression and PTSD with grief.  We often relive situations over and over and over.  Most people will relive that situation over and over.  We have nightmares and depression.  Imagine it taking longer to process everything and you have me.  So, when the world was starting to ask if I needed mental help I wondered if they weren’t correct.  I had too much pride at the time though and I doubt they would have caught the Autism anyway
The point is what I felt was so traumatic that I wished God would kill me.  I wasn’t suicidal; I just didn’t want to hold all those feelings.  I was bursting with so much sadness and it had nowhere to go.  I started taking anti-depressants because I didn’t want to have emotions any more.  If I could have lived my life completely void of any feeling I would have done it back then.  There was no “light at the end of the tunnel" because there was infertility.  When you have a kid after stillbirth or miscarriage they call it your “rainbow baby” as if that baby would be the jackpot to resolve the grief you feel for the other baby.  I’m told it doesn’t but I haven’t experienced that to know first hand.

When I see this video and know that the message is to help people who are where I was just a few years ago I’m overjoyed.  These people get me.  They are just like me.  They know me and they haven’t even met me.  I survived to see that there is happiness again but so many people can’t see the good in the world.  You can’t know that pain unless you’ve felt it.  It’s made so much worse when you can’t express your loss to the world.  You may as well have gagged me and thrown me in a closet because I felt like a prisoner.  I acted like a prisoner trying to be set free.  That means I wasn’t always rational or fair.  That is why I called this blog “Taboo.”  We have to speak up for the losses we’ve endured.  If we don’t do it for us we have to do it for everyone else who is suffering in silence.

Five days stands between getting that message out and letting someone like me suffer in the same ignorance.  Less than $20,000 stands between helping millions of families around the world and having to stop production.  That is not impossible.  You have to tell everyone and they have to tell everyone.  You have to be able to give any amount of money you can no matter how much or how little.

Thank you so much for listening and for remembering the lost little children.  They will always be loved and always matter!

Saturday, August 24, 2013

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:

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 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.

Saturday, August 17, 2013

Being What You Are

A while ago I heard this positive thinking seminar.  The end point was that you decide to be happy.  It's no one else's responsibility.  They told this story about the people who were happy and kept people's spirits while in the concentration camps.  These people were presented like superhero's, not responsible for everyone and yet still able to cope and see the best in what happened.  In that way they did end up taking the responsibility for the well-being of others and became leaders, mentors and kin to everyone who knew them.  
The seminar made it seem like everyone could be like that.  For so long I assumed that was true.  If you want to be happy then be happy.  You'll be a mentor, leader and kin.  Everything will be roses not because they are but because I make them that way.
I never stopped to think how rare those mentors are.  There is more than just being happy because you want to.  Wouldn't everyone choose to be like that if it were so easy?  
It's rare because we are all so different.  We never could become happy by flipping a switch.  What reasons can inspire you NOT to be a mentor and leader?  Can't you still be inspiring and not have to laugh through a Holocaust?  Why is it okay to be yourself and when is it not okay?  
The more my husband and I learn what questions to ask each other we discover how different we think.  We cope different.  We react different.  We both have trouble with ourselves.  We are different!  Why is that not okay?  Why should I spend so much time trying to normal?  I'm trying to be someone I'm not.  I'm trying to be like you.
When I was told for the first time I would never accomplish being normal but I could come close I was angry.  The answer to the problem was to keep on pretending to be what I'm not.  I keep going into tough social situations and coming out scared and exhausted.  I want to be relaxed and comfortable AND be social.  

I see myself in almost every word and I cringe and the mountain I've been climbing.  I don't see the summit but I know I want to overcome this obstacle.  I want to be like other people.
But the therapist told me I never would.  I'd never BE like you.  I could NEVER do all the things you do.  All this time I've spent believing if I try harder I'll be just as good as average has only taught me to be hard on myself.  I can barely see my talents any more.  
Then I think that no one feels normal.  We all want perfection in something.  None of us have evolved into something exactly like we want.  When someone tells you to stop making a mistake or to drop a flaw you have laugh at them.  I think it's okay to make them feel the way you do so point and laugh at their naive ignorance.  
Sometimes you CAN'T and sometimes you CAN.  The best we can hope for is to TRY and know when it's better for our well-being to STOP TRYING.  That is what they don't tell you in those seminars.  You can be happily imperfect.  You don't have to be a superhero to be a hero.

Thursday, August 15, 2013

Healing Hobbies

Healing is a large part of coming to terms with grief.  The moment you realize grief is a life-long companion is terrifying but you can find joy in grief.  I helped myself by finding things that used to interest me.  It was surprising to discover I still had fun with hobbies.  You forget what you enjoy when you are swept up in the all-consuming struggle for fertility.  My favorite hobby is photography.  With every snapshot a bit of the pain has been taken out of grief.  I wanted to share some mementos.  Maybe you will be inspired to take up a hobby you love.  Even if you are still TTC you can find a moment to ponder what brought you joy before.  Go and create something.  Bring beauty into your life.