myendojourney

Week sixteen – the future

Posted on: June 29, 2011


It has been over a week since I wrote my letter to Motherhood.  Writing this letter has brought so many things to the surface for me. Emotions that I have dealt with and I will continue to deal with.  Life has dealt me a funny hand,  not the one I would have chosen,  but not one that I am going to turn away.

The choice I have made cannot be undone, no matter what I feel each day. I am where I am and that is the end of it.

On Saturday I received my latest edition of the Endometriosis UK newsletter, this comes out quarterly and is often full of good resources,  aimed at informing and helping ladies who are sufferers of this disease.

This newsletter is themed around fertility and I was approached a few months ago to write an article for this feature,  because of my decision to have a hysterectomy.  Due to the enormity of this subject matter my article will feature in the next edition.  This edition focused on ladies who have battled with fertility and been able to become a parent whether through a natural miracle, IVF or adoption.  I read the magazine through and it invoked as you would expect a huge bundle of emotions.

Whenever I hear about an endosister who has had a laparoscopy and fallen pregnant or who has embarked on IVF and it has worked it leaves me wondering ….. what if.  I don’t dwell on this because if you allow them those questions relating to ‘what ifs’ will eat away at you and make you so miserable.

Surprisingly what made me fall apart on Saturday was the section about frequently asked questions regarding endometriosis and fertility.  Simply an endosister asked ‘Does endometriosis cause miscarriages’  the reply plainly was ‘Yes’ .  The only person who truly knows what agony our miscarriages have caused is Duncan.  We have both scoured the internet looking for information and evidence that our losses were caused by endo.  Before November 2009 (my second lap where diagnosis was confirmed)  we had been unable to find any substantial evidence. The first person to ever say that endo was the cause of my bodies inability to carry a viable pregnancy was the gynecologist who operated on that November day.  9th November 2009 will always leave a mark in my life.

I was given this shattering information in the recovery room after my op.  I then had the heartbreaking job of telling my husband that at last we had a reason for our miscarriages, my most recent loss was only 8 weeks previous. I remember him coming to the hospital to collect me, and me being unable to get the words out to tell him – I was so devastated and I knew that I was about to break his world.  We sat together in the car and just sobbed,  relief that they had found the endo,  but devastation at what this meant.  I know in terms of recurrent miscarriage sufferers I am one of the lucky ones – many ladies never find out the cause of their losses.

Since then we have both noticed that there has been limited but small amounts of information leaking through on sites relating to the connection between endo and miscarriages.  Reading this acknowledgment in the recent magazine made me angry and sad.

There is a huge part of me that accepts that endo is something the medical profession understands little about – which is why research is so important,  but as a woman, a mother who never got to meet her angels I am angry that it has taken this long to discover and to actually admit this link.

I sat in our garden reading the magazine and sobbed,  I sobbed for all of the endosisters who may experience what we have and I sobbed for our angels.

Today I have re read the magazine with less emotion – the stories of success will give much hope to those ladies who are desperate to be a mum, and will I hope inform and guide those looking for direction. Sadly it doesn’t give any of us a crystal ball. I hope that the next magazine talks about those ladies who havent had the ‘blue line’ or become Mums, because we are in the category that no one wants to talk about our voice is seldom heard.

Don’t get me wrong I don’t think that if I was a Mum my would be simple, motherhood itself is not an easy pathway, suddenly you become responsible for someone else and have to make decisions on their behalf, many Mums have to then negotiate on behalf of their child with medical professionals, always hoping that the decisions made are the right thing for their child.

As I write this today an amazing woman and mother who is so close to my heart is going through a life changing experience,  her future and the future of her son is being decided by a group of people making an assessment on a past experience.  None of us have that crystal ball,  none of us ever know if we are doing the right or wrong thing.  Ultimately we all walk a pathway through life and hope that we make the right decisions at the right time.  These decisions can only be made at the time where we are at that split second in life.  There is no room for reproach or regret,  we have to look forward and forget the ‘what if’s’  we can only deal with what we know, not what we may have had.  I know that this inspirational, awesome woman will make the best of what ever happens today, I want her to know (I have said it many times) that what ever it will be okay and I will always be there for her. No matter what.

This poem written by Emily Kingsley Welcome to Holland describes the experience of raising a child with a disability, this resonates with the infertility journey too, the feelings of not being in the baby club.  Not receiving your ticket to a destination that everyone else has.

Welcome to Holland

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy.  You buy a bunch of guide books and make your wonderful plans. The Coliseum.  The Michelangelo David.  The gondolas in Venice.  You may learn some handy phrases in Italian.  It’s all very exciting.

After months of eager anticipation, the day finally arrives.  You pack your bags and off you go.  Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy!  I’m supposed to be in Italy.  All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan.  They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease.  It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language.  And you will meet a whole new group of people you would never have met.

It’s just a different place.  It’s slower-paced than Italy, less flashy than Italy.  But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips.  Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there.  And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.” 

And the pain of that will never, ever, ever, ever  go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

*     *     *©1987 by Emily Perl Kingsley. All rights reserved.  Reprinted by permission of the author.

Regards
Endosister Liz

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Roses of Endometriosis

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