Is there hope? – Infertility Manifesto (Part 2)

 

When she was a few months old, and not able to sleep, my first instinct was to pick my niece up and carry her around, against my chest, singing softly to her. To soothe her. I would walk for as long as it took because from the moment I saw her, I feel in love with her. She was the first baby that upturned (in a good way) my immediate family and my world, and I was very apprehensive about how I would feel. I dreaded her arrival, not knowing if I would shy away from hugging her. I would have flash backs to when I was first diagnosed, an anxious fraught girl of 17 not wanting to look at babies or pregnant women yet finding my eyes would seek them out anyway. They became curiosities; a world that I was barred from entering it would seem, without knowing if I even wanted to buy a ticket. Now, I know I would have bought a hundred and more if I had the chance. But back then, it was not so simple.

My niece, and then my two nephews brought a new awareness into my life, a seed of love that I’d been wanting to sow for years but hadn’t dared try. I’ll admit, I dived in. Head over heels in love, delighted by each of them. When my best friend, my sister, had her baby and I got to hold him within hours of his birth, it was one of the hardest things and best things I’ve ever experienced. Hard because I wondered if this is the space where my joy had to nest, the sister of a mum, but never a mum myself. And the best moment because when he curled into my chest and fell asleep, I felt proud of my sister and so very happy.

Grief as many people know is like undulating desert sands, one minute you feel like you are gliding through okay and the next, it appears like quicksand pulling you under. Happiness is almost as scary, because when we feel joy, we might be at our most vulnerable.  When we are so open and let down our barriers, we step forward and hold out our hands for the joy. For peace, for whatever it is that makes our hearts happy. I have learnt over the past 13 years that it is okay to hold hope alongside the grief. What does this look like? For me, it was about asking the question, ‘who am i? Why am I not like other women? Why didn’t God give me a reproductive system? Why am I so chronically sick?’ alongside ‘Is there hope? Will I accept this one day? Will someone love me? Will I love myself? Is it okay to be a woman and not have everything society (note: patriarchy) deems ‘womanly’?’ Here – if you haven’t already guessed, curiosity sits alongside the horror. Or rather, it’s that small voice at the end of the days that says, “somehow, will I be okay?’. I used to dull that voice, ignore it, scratch it away. You see, there are many stages to hope. One – is feeling worthy of it in the first place. Long before you ever embrace it. It is born of the negative things we are told by others, but more so by ourselves. It can cause a lot of damage.

So here I sit, writing about hope. Hope beyond the grief. But really, it’s never gone. Instead, I have learnt that we can hold both the sadness and the happiness in our hands, in our hearts, simultaneously. One is never solely static, but rather it moves. The pain I felt when I turned 30 and realised I would have to get fertility tests, that I would be beholden to a biomedical system if I ever wanted a child of my own just as I have been for the past 20 years to keep me healthy *enough* so that I could have *enough* of a life. This pain sits alongside feeling more comfortable in my body, knowing that an empty hole in my stomach where a womb should (or rather, could) be is not barren. This social construct that suggests barrenness is a form of nothingness, fails for all womankind. It holds us up to a standard that we will always fall short of, in some way. So, I have decided to embrace my nothingness and see it as a way to cultivate connection with others who also have MRKH, but beyond. This pain, grief, and self-hope sit alongside another kind of hope. That I will one day hold a child in my arms and call them my own darling. A dangerous, beautiful, fragile strand of hope that no one sees, but I feel it. Some days, I even smile knowing it is there because it’s very presence lets me know that I AM worthy, of children, of love, that the body I live in is not a replica of anything else out there. And neither is yours. It is beautiful, and if you feel it is imperfect, then repeat after me: you’re beautiful because you are you.

A clique I know, but your story is part of you, your sweat and tears are your very mantel and you deserve to feel at peace with it. To allow the hope and the sadness to both reside without questioning them. More importantly, do not feel guilty when you do have hope, or even frustration when it seems all but gone. If you are anything like me, it is still there. You have become a warrior, you were born a unicorn not a horse and on bad days there is no way in hell that the hope you have in your heart has vanished. When the pain eases, it will be there.

About Hannah …

Hannah is a doctoral student in medical anthropology, exploring the topic of surrogacy within a New Zealand and global context. Besides this, she discovered she had MRKH at 17 and battles other complex health conditions. She is passionate about creating awareness, advocacy and sharing empathy with others through reflecting on her own experiences as well as the connections she makes with others.And she also happens to be a beautiful soul with a lot of love to give – the Sisters for Love MRKH Foundation continues to cherish this friendship.

Feel A Little Less Alone …

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Last year I attended my second Sisters for Love MRKH Foundation support group meeting. The first time I went to a meeting was the first time I had ever met someone else with MRKH in person. I was incredibly nervous and overwhelmed but also excited about finally not being the only one in the room.
When I went to the second meeting last year I felt more confident to engage with everyone get involved. I can t underestimate how valuable this experience is –it makes everyone feel a little less alone in the world. Since then I have been fortunate enough to connect with women who are advocating for MRKH all around the world.
Ally and Jaqi do an incredible job with these meetings and always make everyone feel welcome and comfortable. The opportunity to connect with others who have has a similar experience is invaluable and has honestly changed the course of my life. Id recommend anyone with MRKH to push through their nerves and come along!
– K xo

Infertility manifesto – Is there hope?

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Hannah Gibson- Guest Blogger

I’m a surrogacy researcher. I also have MRKH, and as much as I try to keep these two parts of my lives separate, there are moments when they converge. Milestones, conversations with participants that remind us of painful moments we ourselves have buried, friends becoming pregnant alongside the time we spend researching and contemplating the big questions, like – what makes a mother?

Rather than delve into why I am researching surrogacy, I want to explore how I approach infertility, and ways in which this attitude has seeped into other parts of my life. Hopefully some of this will resonate, and if it doesn’t, I hope that it triggers your own contemplation’s.

I turned 30 this year, and I was not expecting it! Cognitively, I was well aware, but let me explain something. When I was 17 and told I could not carry children due to the missing womb, I grieved for what I thought my future children would be. Did I want kids? I wasn’t hands.jpgsure, but in those moments it was like I was symbolically given them before they were snatched away. A dream that I could never have. I learnt how to bury this grief, although I was always respectful of it, but it went from being the size of a monster looming over me to the size of a postage stamp that constantly sat in my back pocket. It branded me, but I learnt how to define myself beyond the confines of the diagnosis that MRKH is. My life became busy with other things like study, relationships, learning to enjoy sex and not beat myself up for what my body couldn’t do, or give. But around the age of 30 I realised how many of my friends were having babies. It was like an explosion of baby bumps and it was a conversation I couldn’t enter, unless it was superficially. I had joy for others, but it too was contained. It was practiced. My relationship also ended at this stage in my life and so I felt like I was unexpectedly entering into a period of soul searching.

What is a mother? A woman that can conceive and carry her baby? Or one that devotes loves and cultivates a shared sense of being in the world through connections with another? This is a central theme I explore in my own work, and yet it permeated into my own life recently. The country I live in, there is little options to adopt. Surrogacy is actually often a quicker route despite the length of time it takes to find someone, to go through the processes. So whilst I wholeheartedly believe that a mother is not defined by what organs she has, or her ability to become pregnant with her own body – I do not want to take away from the fact that not having the choice to carry your own child is heart wrenching for many women, myself included. More so, I didn’t realise how much the possibility of a childless future would impact on me.

With this new realisation, I decided to look into fertility preservation options. In New Zealand these include stimulating the ovaries (or in my case ovary) with synthetic drugs, to produce more hopeeggs which can be harvested in a medical clinic and then frozen either by themselves or with the sperm of their partner (or sperm donor). It is not cheap, costing 10,000 per
cycle. However with my eggs being at the best possible quality now, it is better t
o explore doing it as opposed to waiting. Seems straight forward enough right? Well the first step is having your GP give you a blood test form to get your AMH levels checked because AMH blood levels are thought to reflect the size of the remaining egg supply. I got this bit of paper but have yet to actually go and get these levels checked. It sits on the pile of paperwork on my desk and I look at it every day as I walk past, aware I want to know but also fearing that it won’t have good results. I’m not sure how ready I am to know if it’s bad news.

The thing is, the motivation behind not wanting to do the test reminds me of the hope hold in our hands sometimes, the precious and fragile piece of possibility for the future. Knowing induces wisdom and often peace eventually, but what does hope do exactly? Is it healthy?  We do this for many parts of our lives. We meet someone new, and in those giddy moments where your soul finds theirs, hope springs forth in between the moments of laughter and joy. Hope is the desire that something will be possible, even if you know the risks involved. Because the greatest truth we know is that loving another has the possibility to hurt the most. So how can we sit with hope?

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About Hannah …

Hannah is a doctoral student in medical anthropology, exploring the topic of surrogacy within a New Zealand and global context. Besides this, she discovered she had MRKH at 17 and battles other complex health conditions. She is passionate about creating awareness, advocacy and sharing empathy with others through reflecting on her own experiences as well as the connections she makes with others.And she also happens to be a beautiful soul with a lot of love to give – the Sisters for Love MRKH Foundation is blessed to have found her.

 

{POEM} My Story Is Not Yours

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My Story Is Not Yours 

– Hannah, New Zealand

I am not broken,

My body does not need

To emerge

From a cocoon.

Less tarnished

And more beautiful.

 

I am not a fighter

A warrior battling foes

Praised because

She survived despite

Her never ending woes.

 

I do not need pity

When I tell my story

Or my path to be

Paved with delicate china

Filled with weak tea of sympathy.

 

I am not over emotional

Unable to stop my voice

Before it ruptures the truth.

I speak my dignity like a

Sword slicing through flesh

And I am proud.

 

I am not invisible,

What I am and have

Are in a bittersweet embrace

My pain is not detachable

My obstacles cannot be fixed

Or kissed away.

 

I am not half woman

Needing organs

To make me whole, man

Fooled us all.

That a woman

Lays back for her country

To seal the grip of the patriarchy

That insists I am less female

Because my vagina was made

Not begotten.

 

My womb-less middle

Is not me lacking in

Femininity or sexuality

The emptiness is not

Blackened by nothingness

But constructed as such

To make others comfortable

In their own journey.

 

I am not infertile,

barren and

sickened by loss

My heart

Is Fertile, with rich soil

To cultivate a different way

 

I am here,

Made whole by broken

Edges, glued together

As God intended.

I am here,

A mosaic of colours

That defy rules of symmetry

 

My story is not yours,

Do not transcribe my reactions

To suit your conscience.

Or my tears for weakness.

If you cannot embrace your empathy

Do not steal away mine.

 

See me,

Not past my mistakes

Not despite of my weak body

scarred by science

My rawness is my strength

My empty spaces give me depth

My weak muscles grasp on

Aware that pain might not foretell

Death, but

Be a symptom of living.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

An Open Letter: Dear My Beauty

 

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It’s not fair nor unfair. It’s not be pitied nor disregarded and it is the invisible grief that most will never talk about. The inner dialogue for infertility is that of subtle sadness, disguised aggression and palpable fear. Whether you ever desired to be a parent or not is quite irrelevant – but when you are questioning the evolutionary pot hole in the road that threatens empty Christmas’s or feeling ‘that kick’ for the first time, there is only one thing to do- and that’s talk about it. Here is an MRKH warrior talking about it.

Dear, My Unborn Beauty,

I am sorry I let you down.

I am sorry that we never got a chance to truly meet-I did everything I could to find your father in time. I tried to fall in love and be loved, in the hope that your home would be built. This simply has not happened and now, I feel as though I have to let you go. It feels impossible and I am desperate to meet you but I just don’t know how to make this happen.

I honestly didn’t try and think about you too much over the years- I wondered why I didn’t feel that achy pang to meet you, leading me to think that perhaps I was even more abnormal. I believe now, that this simple thought of not meeting you may have been too distressing to comprehend. Secretly of course, I always hoped that I would find the means and my true love to make you. Beauty, my darling daughter – please know I love you. I love your beautiful blue eyes and love for nature. I admire your strength to meet me too and the way our silent love story began. With such sheer determination, you never really left my side. I am trying to find a way to help others through this pain yet my empathy perhaps only feels warranted now. A mourning world exists with so many wanted children who never quite make it.

Where do you all go, when the hope does?

My promise to you -I will carry you through birthdays and Christmas’s. I will teach you to sing when I do and offer you gentle dreams when I fall asleep. I will proudly see you learn to walk as I take my first steps of the day and dedicate my morning practice to your cosmic soul, wherever you are. My muster for your existence will never go despite your actual presence being through my own sacred moments and not play-dates with others. Precious one, you will always be my ultimate destination. Through words and ocean swims, you are my warmth and the peace these simply pleasures bring to me. 

Your grandparents, they so love you too. Their dreams to dote on, as you unwrap gifts and take your first bike-ride through my childhood streets still sit on the mantelpiece at home. Gosh, they loved your mother so much. They seldom spoke of you, for even the most desperate manifestation techniques may not deliver you to us.

Be somewhere where I can find you when I finish a busy day and halt this busy life. And forgive me. Please forgive my not knowing soon enough that I wanted you. Forgive me for only waking up to your mumbles and crying now. I couldn’t hear the cries of any past dreams and only now, do I smile thinking of you when no-one else is looking.

In the middle of concrete towers and a restless city, my precious, unborn beauty –you bring me calm and escape.

You walk just one step to my left. You smile back at me in mirrored perfection – with such sheer grace and angelic lightness, you are there. When the branches move, its you. When the ocean breaks, it’s you who cracks the wave and when 5 o’clock comes, those shadows that we see, have you spinning in themThey say the footprints in the sand are those of the Lord’s when he carries us through our difficult times. I say, if the footprints are the Lords, then the shadows are his friends. 

Take my hand and walk with me. 

You are so beautiful and I will always place my hands in prayer for your safety and happiness.

From me.

Sincerely,

Anonymous

As originally posted on The Empowerment of the Silent Sisterhood, on behalf of the Beautiful You MRKH Foundation, April, 2016.

Please click on the following link to be directed to BYMKRH- The Empowerment of the Silent Sisterhood Blog: http://beautifulyoumrkh.wordpress.com/

The ‘Markings’ of a Good Life!

 

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My land legs are a bit wobbly as of late- and when I say land, I mean life and when I say wobbly, I mean vulnerable. I am essentially feeling vulnerable in life. When you have committed to exploring one’s self, you tend to uncover more than you bargained for but the commitment is involuntary and there is no going back. The journey to self-love is similar to soft-sand running – the views can be beautiful and you know that you are toning the jiggly bits but it can be an exhausting process- muscles ache, skin hardens and it’s nothing like the movies portray.

MRKH, a condition which has been explained to me as a ‘genetic pot hole in the road’ has been a mammoth and gruelling process of self-acceptance since being diagnosed in my late teens. Being told at such a vulnerable and innocent age that you were born without the certain ‘parts’, that instinctively and innately define us as a ‘complete’ woman, was nothing short of harrowing. Though this no longer burdens me, it’s the scars that do.

No-one ever really stares as such or asks the uncomfortable questions. It could be in my head? Though, for something which is apparently quite ‘common’ in a teenager’s life, I haven’t seen anyone with scars of self-harming. Friends say, ‘could be anything- you could of fallen into something’ – yes, a razor blade lovely ones! However dark humour aside, I do see their kindness and I love them even more for wrapping me up in this beautiful and unconditional way but frankly, I am really upset that I chose to brand myself in this way. The process of self-acceptance has rattled me in a way that I simply did not anticipate.

So, where to from here? I tackle this in the only ways I know how- I up my yoga practice, I swim alone and be okay with that, I wear shorter sleeves on purpose and try to say thank you at compliments rather than ‘hump’ in the opposite direction. When I go on a date, I try to have twinkly eyes as opposed to internally rehearsing scripts of apology when my past is uncovered – do I say I had a difficult teenage life? Do I say how I’ve come through the other side? Do I not say anything and wait for the question to be asked? Maybe the question need not be asked?

Only recently, I was walking to meet one particular boy for a Sunday afternoon of ocean frolicking and summer silliness. But as I approached the beach, I so very nearly turned back. Why? Because there was a chance we may go for a swim. A swim! I would have to deliver my script, unclothe my past, absorb the stares and risk a potential opportunity for love.

When did my fears become so profound that I would deny myself such precious moments where the ocean and summer were to be deliberately avoided? This is when I chose to change my script.

Self-harm is not attention seeking or abnormal (as one date uttered under his breath at the end of a meal). It is not a weakness or a reason to be ashamed. My shame is stale and expired. For me during that sad time, I was finding an expression when I didn’t have the tools to do so in any other way.

My expression was fear and a simple sadness at ‘not feeling good enough’. I did this practice alone; quietly. I didn’t understand it. I just know that when I do peer down at the scars that will never go, I have an opportunity to embrace and love all that I am. And all that I will become.

As for self-love- It’s a daily mantra and opportunity to be kind to me. I will no longer apologise or fear moments in my life for I am here, sitting in a precious coffee shop surrounded by laughter, sticky-treats and books. Last night I called my parents and today I will head back onto the yoga mat with my mermaids and special one’s.

As for falling in love – never has there been such a perfect moment for my own little love affair.

As originally posted on The Empowerment of the Silent Sisterhood, on behalf of the Beautiful You MRKH Foundation, November 2015.

Please click on the following link to be directed to BYMKRH- The Empowerment of the Silent Sisterhood Blog: The Beautiful You MRKH Foundation: The Empowerment of the Silent Sisterhood

Why is the ‘big’ MRKH reveal so scary??

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‘Sticks and stones can break our bones but names can ‘sometimes’ hurt us?

The Sisters for Love MRKH Foundation Ambassadors were recently asked a series of questions relating to the somewhat terrifying prospect of telling a significant other about the condition MRKH and what it means to them. The last question on the table, “Why Is The Big MRKH Reveal So Scary??”. See what these beautiful women had to say and despite the ‘how’ and ‘when’ being crucial to the process, it’s the ‘why’ that under-pins the fear and cages us from sometimes ever taking that leap into self-acceptance.

Samantha Ottley- New Zealand Ambassador:

Sam
Although I am more open now, when we first got together I didn’t talk to anyone about MRKH, and I didn’t know anyone with MRKH. I was petrified anyone who knew would see me as being different and that this would change things, and for a long time this hung over my shoulders. To an extent it still does, however with the Sisters for Love community and the constant support I receive just from knowing other MRKH’ers, the concerns i have seem less and less important, and I am becoming more confident with myself. I cannot stress the importance of having a support network (online or otherwise) to help you become a more confident woman in your own body.

 

Jodie Coughlan- Victoria Ambassador:

Jodie Blog

I was concerned that he would think less of me because that is how I felt about myself at the time. This, however, was not the case at all for him. He has always valued everything about me and has never once made me feel bad about who I am and about having MRKH. It actually never really occurred to me that I would be rejected for not being able to carry a child, I was more concerned that he wouldn’t want me because I wasn’t perfect. I look back at that now and think how ridiculous, no one is perfect.

Kristen Peterson- America Ambassador:

Kristen

My main concern is always their reaction when I tell them I can’t get pregnant. Having kids is something I want in my life, so of course I look for a partner who wants the same!   I don’t worry too much about anything else. If he were to make a rude comment about it or try to make me feel badly about it, that says something about him, not me!

Kelsey Gyan- Western Australia Ambassador

Kelsey

My main concern was my MRKH would be a deal breaker for firstly our friendship (in the early stages) and secondly our relationship. However, that wasn’t the case and if anything it has brought us closer together. I think the important thing I learnt through the experience was that being upfront and honest was the best thing I could have done because it meant there were no secrets between us. In hindsight I also feel that if telling him did mean the end of our relationship then I would have preferred that rather then living with the anxiety of what would have happened had I not told him.

Bianca Alexander- Queensland Ambassador:

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My main concern was that they would consider me weird and a ‘freak’. I also worried that they may think that because I was born without a uterus, I could be male. I have of course since learned that many women have these feelings (mainly that they are a freak) and eventually learn to accept having MRKH Syndrome and learn to love themselves unconditionally. I now love myself unconditionally and accept my condition.

Wonderful job ladies- you make my heart tickle and my pride soar. Ally Sisters for Love MRKH Foundation/Co-Founder