Saturday, May 12, 2012

There's no sister like an HG sister

You would think that since this weekend is Mother's Day, I would talk about being a mom.  But instead, I want to talk about sisters.  You see, I am very lucky in that I got to give my daughter a sister.  Not that she always appreciates it to be honest; you should hear the two of them fight.  There are 6 years of age between the two of them.  And, as it is, my youngest child almost didn't make it into this world - multiple times.  My oldest child could just as easily have been an only child, a daughter without a sister.  Thankfully, miracles sometimes still happen.

Photograph by Sarah Elizabeth Photography http://www.sarah-e-photography.com

But this post is not just about my quest to give my daughter a sister, but about how I found "sisters" of my own.  This post is part of my ongoing effort to raise awareness about a debilitating, sometimes fatal pregnancy illness that I had.  A disease experienced by 1 out of 1,000 women - a sisterhood of HGers.  You see, when you travel the lonely road of unknown and misunderstood diseases, you join a sisterhood.  Without a doubt, I would rather have not joined this sisterhood - but I am so thankful to have these women in my lives.  They are survivors and fighters.  They are wounded and changed, but they live life with a new understanding and appreciation.  So today, in celebration of the first ever World HG Awareness Day on May 15th, I share with you a post I wrote a while ago called "There's No Sister Like an HG Sister" . . .



I was not born with a sister, but I have been blessed to have many. There is nothing quite like a debilitating, life threatening disease to bring people together. Honestly, I would rather not be cursed to have Hyperemesis Gravidarum (HG) in my pregnancies. But if I have to have it, at least I get these wonderful new "sisters" out of the deal. And my babies, they get to have all these "aunties".

The thing about a disease is no one, and I do mean no one, can understand what it is like unless they have experienced it themselves. Someone who has experienced HG wouldn't bat an eyelash when you declared that you begged God to die and just let it be over. Of course you did, they would say, who doesn't? When, in a moment of complete and utter honestly with yourself and the universe, you admit that you had thought about ending the pregnancy they would react with - compassion. There would be no gasp and declaration of how could you think such a thing, because they know how you could.

You know how in the old Looney Tunes cartoons someone would be wandering in the desert dying of thirst and they would suddenly see a mirage appear? It turns out, that is not so much of an exaggeration. You see, you can be that dehydrated and it does start to take you to the edge of psychosis. And an HG sister, she can listen to what you are saying and, without pausing for a beat say, "You know, I think you should go right now to the ER and get some fluids. You sound really dehydrated to me. Don't say or do anything until you are hydrated and in a better frame of mind." And they are always right.

The truth is, my children owe their lives more to my HG sisters than to my doctors - and that is not really a big stretch. They were there, day in and day out suggesting treatment options to mention to my doctor, holding my hands during the days that I begged to die, and rejoicing when I had a day where I didn't feel quite so - on the verge.

I have had the privilege to meet many of my HG sisters, and they are just as fabulous as you would think they are. I have mourned with many of them. And I have rejoiced with many of them. Their children are dear and precious to me - all of them, those that did make it and those that didn't. I love to hear about them: the first time they crawled, the first time they took a step, the first time they said "mama." These children, and their mothers, they are a part of me - a part of my life story. And I cherish them. When someone saves your life, there's kinda no walking away from that. You are bonded in ways that you can't imagine.

And when you mourn together . . . there are no words. I must admit that I know a devastatingly large amount of angel babies. And sadly, I have one of my own. And my HG sisters, they always remember. They know that in the deep dark corners of my heart there is an empty space with the name Casey written on it that nothing, no other baby, no amount of love and joy and peace, can ever fill. They know that I wake up in the mornings wondering "what if" and go to sleep at night saying "I miss you". And many of them, they have their own heart spaces with different names. And we help each other with this truth, too. It is a horrible, gut wrenching truth - but the fact is, HG can be devastatingly hard for the mom and quite deadly for the baby. It is true, woman still die in pregnancy. At the end of 9 months, no matter how hard you fight and how much you pray, there is not always a baby. Sometimes, after days and months of suffering, there is . . . a heartbreak that you never fully recover from.

I know, and love, HG sisters who now are dealing with life long health consequences from HG. Their bodies are deteriorating. Their health is not the same. They are not the same. You see, when you have stood at the edge of a cliff and looked down into the abyss called maybe death - you don't walk away from it the same. You are different. You are changed.

And at some point every HGer will have to make a heartwrenching choice: can I do this again? There is a heartbreak that comes from wanting to have more children but not being able to. Many people experience this heartbreak for different reasons - infertility and other health issues. But at some point, every HGer will have to face this question. Many of us have the decision taken away from us completely - there is too much damage done to our bodies, there is too much risk, there are not good enough viable treatment options. Others, well - we just don't want to go back up onto the cliff and take a chance of staring into that abyss again. One day, you may get too close to the edge and finally make that fall. There is only so much a doctor can do, after all. And every treatment option that you have available to you comes with its own risks.

So I watch the children that I am blessed to have grow, I watch my HG babies grow, and I thank God for my sisters. They were not born unto me - they were thrust onto me with all the grace of a newborn trying to navigate a hostile world. But I would not be alive without them. My children would not be alive without them. And in many ways, I love them more than I could any natural born sister for they, and they alone, know the deep down secrets of my heart. They know what I mean when I say you know how or remember when or I felt this . . . They know it in a way that not even my husband, who saw it all, can ever know. For they haven't just seen or heard, but they have FELT.

So now there are new places in my heart. In fact, next to the empty spot named Casey, there are new spaces with the words Erika, Aimee, Marti, Sarah, Mel, Suzanne, Jessica . . . so many names. More names then I could have ever imagined. They have each helped me in their own special way. And they wait to help others and add more names onto their hearts, to add more children to their families. For when a community works together to bring a child into the world against terrible odds, the community adopts that child. I can't even begin to tell you how big my family is these days. And I rejoice each time it gets bigger.

If you know someone who has or is suffering from Hyperemesis Gravidarum, they can get help and support at the Hyperemesis Education and Research foundation (www.helpher.org).  To see all of our HG posts for World HG Awareness Day please go here.

8 comments:

  1. Karen -

    You know how much I respect you as a librarian and a friend, and when I read this post, along with the previous posts about HG, my appreciation for you skyrocketed even more.

    I have no idea what it is like to have HG and to have experienced that kind of physical and emotional pain. I have lost a child, but not under the same circumstances with which you lost Casey. I'm sure Casey's playing with my child now too and they're watching over us both.

    Your bravery in teaching others about this disease and wearing your heart on your sleeve is beautiful. You are one of the most beautiful people I know, inside and out.

    I too have 'sisters' who have been there for me through my darkest times and who have made me into a better person, just by their mere presence.

    I love you, K-Bomb. I suppose you're my librarian 'sister'. =D

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    1. Stephanie -

      Every lost baby, no matter the reason, is a heartache no woman should have to bear. I wish we lived in a more perfect world where pregnancy was easy and every mom got their babies. I write your babies name on my heart as well. And yes, I do hope they are playing together and watching over us. And yes, you are my librarian "sister" and friend, such a tremendous blessing and I thank you. I love you, Stephie Jo - I even wrote an ode to you LOL

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  2. Beautiful .. I love you too! Nothing like an HG sister!

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  3. Beautiful! I don't have a "sister" either, but you know what HG sisters are amazing! I love you !

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  4. Erika WOOD5/12/2012

    Love you so very much, SS! You saved us too. LOVE LOVE LOVE!!!!

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  5. Anonymous5/15/2012

    I remember. I try to forget, but it's still there. Always will be. I love you, too. And, thank you for Jack.

    To those reading these comments, Jack is one of the babies Karen speaks of, a nephew who surprised us all. Her love, support, suggestions got me from the loss of his sister, something I've never quite recovered from, to a full term little brother I never expected to survive.

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  6. Anonymous5/15/2012

    I just noted the date of this post...8 years after Hope died. We're all connected in ways we don't understand, but it is as you say.

    Love, Suzanne

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  7. Anonymous5/16/2013

    Thank you for this. There is no one quite like a HG sister. Love you Karen!

    -Elise

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