Pay It Forward

Buzz words and catch phrases.  They are kind of interesting I think.  Catchy dominating meaningful collections of consonants and vowels, but when we see them we immediately relate to them in some way.  They spark an emotion, or a memory.  They make us think of something specific.  They can make or break an ad campaign.

Can you hear me now?

Where’s the beef?

Who let the dogs out?

Open, Open, Open…

You’re in good hands

These phrases either make me cringe, or make me remember some funny obscure time in my life when the phrase was repeated out of context and I busted out laughing.  We’ve probably all heard them, and repeated them ad nauseam.

But there are some buzz words that have entered into my daily consciousness lately that really have my head and heart spinning.

Depression

Therapy

Treatment

Infertility

Anxiety

Surrogacy

As you can guess, these words and their mostly negative connotations are pretty rampant in my world.  Not necessarily for me personally, but in the social circles I find myself in where so many of us have MRKH.  It’s kind of scary to have these strong connections between these issues and MRKH, but it’s the reality of it.  Let’s face it…when you are a teenager and trying to figure out life in general, and your sexual identity, and the whole what do I want to be when I grow up stuff…and you get the diagnosis of MRKH….it’s potentially crushing.  And it has LIFE LONG impact.  You don’t just get the diagnosis, get a prescription to kill the bacteria, and you’re cured and life goes on.  You have to deal with it every day in some way for the rest of your life.

When you get diagnosed with MRKH you kind of go through this mental triage….what can I deal with today….what can wait?  You know, stop the bleeding, keep breathing, stitch the wound, change the bandage, dry the tears, and that’s all I can cope with today.  At least I did.  No uterus, can’t carry a child…ok..I’ll deal with that later.  Today I have to deal with the fact you just told me I can’t have sex like a regular person until I have some treatment to stretch my…yeah….ok…let’s not say it out loud.    So, take a deep breath and ask about treatment option….hear an option I can accept….ask a couple more questions, and walk away.

So…on the inside, I’m all stressed out, terrified, mortified….but the face I show the world is a cleaned up accident victim…battered and bruised, but walking out of the clinic of my own free power.  I’ll be better in a few days – at least in the public’s eyes.  And inside, the wounds are healing too…slowly…but I’ve got a lot to process and think about – and NO ONE to talk to or ask questions.  Heck, I don’t even know what questions to ask…let alone who I could possibly talk to about them.  I’m alone in this diagnosis.  It’s extremely rare, I’ve never seen a case like yours before.

Looking back at that time in my life, and several other challenging times in my life as it relates to MRKH I can recognize that I had to deal with most of those buzz words on my own.  But I walked that path 95% alone.  I dealt with depression, infertility, anxiety, and all those things quietly on my own.  I had some treatments, did some therapy, went to support groups, but still – no one with MRKH ever crossed my path, so no one could quite relate to what I was going through.

I managed, I persevered, I even thrived.  I have done good things, even great things with my life.  I have fought emotional battles in my head and heart, and I have found my path through them.  But most of it has been walking the path alone, not knowing that it could have been any different.

And then I found the Beautiful You MRKH Foundation web site.  I was stunned.  I was NOT alone.  There were beautiful women all over the WORLD who were just like me.  Through BYMRKH I found support groups online, I found email lists, and I found women just like me.  As I made more and more connections, I found friends, SISTERS, mentors and those in need of mentoring.  I found my niche.  I talked to so many and was moved to tears often at the outpouring of unconditional love that was shown and shared.  But I also saw our common struggles – depression, anxiety, treatments, therapy.  I watched several of my new friends go through fertility treatments, IVF cycles, and surrogacy – with both glorious success, and tragic loss.  The last few years have been a very dynamic part of my journey in life, and the role that MRKH plays in it.  It hasn’t all be wine and roses, but neither has it been easy.  I’ve faced a few demons, healed some deeply seated wounds, and have grown tremendously as a person.  I no longer feel like I’m all alone and having to face everything with no back up.  I now have an army of incredible women to share my journey with.

As I walk this journey of MRKH, I watch carefully for those who are battling demons – and I try and offer them encouragement and support…if only to say, “You are not alone and I’m here for you if you need me.” I’ve walked this path, and it’s much easier if someone is there to hold your hand.  MRKH wraps around our lives in unexpected ways.  Funny things will set us off without warning.  Things that didn’t bother us at all at 17 are devastating at 27.  Challenges hit us at all the seasons of our lives, but with my MRKH sisters surrounding me, I know I don’t have to walk into the blackness alone – and those buzzwords don’t scare me anymore.  I know we will fight them together.

My heart is tender this week for several of my MRKH sisters who are going through some pretty challenging times.  I do my best to show them love and support and encouragement, even when I’ve never met some of them face to face.   I’ve said many prayers, I’ve mailed a few cards, I’ve reached out to them with kind words and encouragement, all to let them know in some small way that they are NOT alone.  Be it emotional, physical, or financial…we all need a little extra support now and then.  I craved it for so many years, and now that I have it – I’ll do everything I can to pay it forward whenever I can.

Do you have kids?

I think figuring out a tactful way to answer this is pretty simple really, and not really the issue.

“No, we don’t have children.” Is sometimes enough for the person asking.  And it’s the answer that is easiest to give, because it doesn’t give anything away.  It doesn’t elude to the heartbreak that is infertility.  The inability to have a child no matter what you do.  It’s the simple answer to the basic and simple question.

When I was younger, and in my “prime child bearing years”, often the question was followed up with a more probing question of “why not?” or “when are you planning them?”.  Sometimes I was brutally honest, and very blunt in my response, “I was born without a uterus and can’t get pregnant.”  And sometimes, I would give an answer along the lines of, “we are considering our options for adoption, but the timing just isn’t right yet.”  I tried not to get too involved with the details, giving just enough information that the questions would stop.  I didn’t share the hurt that comes along with being told at 18 that you are infertile, that you will never carry a child in your body.  I would never shop for maternity clothes, I would never pee on a stick and wait with wild anticipation of the results.  That option was ripped away from me when I was diagnosed with MRKH.

I still wanted to have children.  I would adopt.  I would get that perfect newborn baby to love and cherish, and that would somehow make me normal and my life would be as I had perfectly planned it to be.  And a couple years later I would get another perfect baby and be a doting mother to 2 charming children – maybe even 3.

Things were falling into place in my life, and so I started really thinking about motherhood and adoption.  I met with social workers, attended support groups, wrote biographies, and talked with doctors about pursing parenthood.  I bought baby clothes and supplies, knowing that if I could just get a baby then my life would be complete.

Over the course of a few months, things changed pretty rapidly in my life.  Or rather, the accumulation of events led to some difficult decisions.  I put the brakes on starting a family in an attempt to truly have control over my life.  I comforted myself in the thought that I could always start again, but first I needed to get MY life in line.

In the months and years that followed, I had several friends start families either through planned or unplanned pregnancies.  I just kept waiting for the right time and worked on filling my life with other activities – putting my infertility on the back burner.  I stumbled around for several years trying to figure out just what I wanted to be when I grew up.  I listened as my biological clock ticked telling me you need to get busy with this parenting thing…you need to get that baby by the time you’re 30.  As I got closer and closer to 30, I thought…well maybe 35.  I could get my life together by the time I’m 35 and still be a mom.  I’d be more responsible and “ready” then to truly give my child the life they deserved.

I wanted to be a mother, but I started to question if I needed to be a mother to be complete in my life.  Was I destined to be a mother, or was my purpose in life to be something else?  I wasn’t sure anymore.  I enjoyed the life I was leading, and I knew that I would be a good mother if a child came into my life. But I had a choice.  My husband and I had a choice, and we could chose to NOT be parents.  After-all, our default option was to not be parents.  There was no way we could accidentally become parents, get unexpectedly pregnant.  We truly had to make a choice – just let the default option be the answer, or actively pursue parenthood. In all honesty, we pretty much just let the default option take over.  We didn’t talk for hours and hours about the pros and cons of parenthood.  We didn’t discuss financial implications of adopting a child or pursuing surrogacy.   We didn’t talk about savings accounts and college funds and baby nurseries and family friendly cars.  We just let the default option be.  We were complete in our individual lives, and in our married lives.  We loved our nieces and nephews, and we would have loved a child.  But we didn’t NEED a child to be whole.

So now, when people ask us, “Do you have children?”, we usually answer “No, we never got around to that.”  Somehow, in your mid 40s if you state that you haven’t had children, it’s an acceptable thing.  Whatever lead to the choice isn’t as important, and they just accept the fact that you chose not to be parents.

I now use the question as an opportunity to talk about infertility and MRKH.  Sometimes I share just a little, and sometimes I spend close to an hour talking about it.  We begin with a recitation of facts:

  • 1 in 8 couples struggles with infertility in some form
  • up to 25% of pregnancies end in miscarriage in the first trimester
  • 1 in 33 babies are born with some sort of congenital birth defect
  • 1 in 4500 women world wide are diagnosed with MRKH

And then I start to discuss my own diagnosis, being born without a uterus, cervix, and the upper portion of my vaginal canal.  I tell them about abnormal kidneys and skeletal and joint issues.  I explain that I do have ovaries and hormones, and all the outward signs of being a woman.  I explain that I still have hormonal cycles – PMS if you will – I just don’t have the punctuation in the form of menstrual bleeding – no period.  Often a full discussion follows where my anatomy is discussed in great detail, to include how I had to stretch my vaginal canal in order to have penetrative vaginal intercourse.  We sometimes talk about other treatment options of vaginal dilators and surgical creation of a neovagina.  And I talk about WHY I talk about it.  How I went over 25 years thinking I was so different, never meeting another woman who had the same thing as me – feeling ashamed of my “otherness” – depression – adoption – surrogacy.  I never want another women to feel so utterly alone.

While I don’t particularly enjoy talking about my physical differences, I feel it’s important – no VITAL – to remove the shame associated with having MRKH.  I am no less a woman than someone who is born with one blue eye and one brown eye.  I am no less a woman than someone who is born with a cleft palate.  I am no less a woman than someone who is born without a fully developed hand or foot.  I am in a unique position where I can say that while I will forever carry this diagnosis – but my diagnosis will not hold me back.  Plenty of my MRKH sisters are mothers.  Some have adopted children, some have used gestational carriers, some are foster parents, and many more of us are pet-parents.  And we are scientists, teachers, engineers, veterinarians, authors, fitness coaches, yogis, accountants, farmers, librarians, politicians, pastors, truck drivers, day care workers, business owners, beauty queens, doctors, counselors, sailors, soldiers, MRKH Warriors.

We are stronger than we ever thought possible.  We are compassionate.  We are fighters, survivalists.  We learn to make a life with what we have, and not focus on what we don’t have.  We learn to improvise, adapt and overcome.  Our path may not be clear, well lit, and obvious – but we will follow it none the less.  We are Courageous.

“How few there are who have courage enough to own their faults, or resolution enough to mend them.”  Benjamin Franklin