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.
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!
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).”
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.
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.
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.
Over and over I read
comments from infertile women being wounded by their fertile friends. It's a
problem born from ignorance. Just yesterday I had a woman say that when I stop
trying is when I'll have kids. Those comments don't bug me at all any more so I
smiled and agreed.
In the infertility
community those comments are discussed to help heal the wound they leave
behind. No matter my opinion I would never directly disagree with another
infertile (sorry, if that's you and you're reading this). That is the same
reason I wish parents would keep their comments to themselves in public. We tend to keep our mouths shut not to make you uncomfortable though that is changing. God forbid, the person
who's (presumably) never suffered through years of torture to have kids be
uncomfortable in my presence when I could take all the burden. I believe
the point of being silent is that my experience will rarely change your opinion
if you aren't asking to know what I know. Many people wish they could be as
naive as a fertile myrtle. If you are a parent and you don't openly discuss non-parents or vice versa then good on you; this blog does not apply to you.
But there is one
jackass comment parents often say (which should be kept to themselves) that I
actually agree with. I can't know what it's like having kids so I can't judge.
I recently read one infertile woman's response to this. She was insulted, and
rightly so, because that is the verbal equivalent of slapping her across the
face for not being able to keep up. The problem is that I agree. Yes, I can
have as many opinions as I want and you can like it or not. I'm very good at
having opinions about kids and their parents. My first instinct is to judge
everyone, parent or not, even if I say I'm not judging.
By voicing my
opinions on how to raise kids I'm being just as big of a jackass as the person
slapping the infertile woman with words. It's not my fault that I can't have
kids and it’s indescribably painful at times. That doesn't change the fact that
I haven't raised kids. I'm breaking my own rules here but I observe bigger
problems that happen due to non-parent's judging those with kids.
First, I've listened
to years of my Mother telling me how judgmental the board is when she takes my
brother to his IEP meetings. They tell her how best to raise her own child when
they have none of their own. They have no way of knowing the real issues
going on, especially if the parent is not all that articulate. We all
know that an education is no substitute for on the job training. I have
no idea what it’s like raising a child and while I want my opinions validated,
in most situations my business is to be silent. If I were on the panel
doing the IEP it's my business to work with the parents, not look down upon
them from an imagined state of superiority. That goes for anyone choosing
to look down on another.
Second, just the same
as the fertile can never comprehend the constant torture trying to get pregnant
the infertile don't (yet) know what it's like being crazy busy every day with
kids. You can be busy from 4 am to midnight every day but if you go down that road you will only start playing the "grief Olympics." In
the grieving community that is where you compare situations to always make it
look like you have it worse. We all suffer. You don't like it when someone
makes you feel guilty for being upset so why do it to someone else? Don't
diminish people. Try building them up with compliments instead.
Thirdly and lastly, parents
need to focus on their kids, not a barrage of opinions being pelted at them. We
all want a better next generation. If we concentrate on telling people how to
do it they may lose sight of actually doing it. Parents may feel the need to
defend their decisions. They may feel like bad parents and question themselves.
They may end up worse parents because of your opinions. Unless you suspect
child abuse it’s best to leave this kind of judging to professionals unless the
parents ask you for your opinion. I want to see parent’s succeed just as I wish
I’d have been a successful parent. Everyone has different ideas on how to do
that. It sucks that I never got to prove to the world that my views on
parenting are the best (which would undoubtedly have changed) but that is what
happened.
I got a crap deal but
you know what, you did too. My experience dictates that you may never be able
to relate to my experience but I can tell you all about what I've learned from
it. Rather than telling people how to change we can listen to what they have
learned. Eventually, all that listening, learning and adapting will lead to a
perfect you. You take the good out of people’s experiences and you don’t have
to learn it the hard way. So next time you want to tell off your childfree
friend of vice versa remember that. You are better off letting them learn on
their own because you can’t force knowledge; they will probably be insulted and
rightly so. You have to come to knowledge on your own.
