Thursday, May 2, 2013

A month of my own

This is not my usual upbeat, chipper type of post. I want to share this because it's important to who I am. If you are a person who has emotional issues triggered by discussions of pregnancy or birth, this post might be difficult to read. But I also hope it helps some reader in a small way.




That's me and the Bear, the night we met: May 1, 1999. I was invited to his college graduation party. He lived in an old three-decker house in Worcester, Massachusetts, the city where we both went to school. Four scruffy male engineering students lived on the top floor of this run-down house; we're standing in the kitchen in this picture. He is in front of his bedroom doorway and I'm in front of the doorway going out to the living room. The cord hanging in the foreground belongs to an old computer keyboard sitting on a high shelf; they were nerds through and through.

My close friend, Jessica, was dating one of his housemates; everyone thought the Bear and I would get along great and had been trying to get us to meet for weeks. I finally agreed on the night of this party; some trickster took this picture to confirm what everyone had always known...we were a perfect match. He was the life of the party - raucous and gregarious; everyone's best friend. And I was a quiet, studious young lady in training to be a raccoon, if my makeup is any indication.

My original plan that night had been to stay home and write a paper on Philip Larkin. I'm so glad I decided to shirk my academic duties for a change; we really did get along great. He was, and still is, the funniest person I have ever known. And incredibly smart and kind too. By the very next day, I knew I loved him and within the week, we had decided to try to have a long-distance relationship. Exactly one week after I met him, he moved to a neighboring state to begin his post-college job. It was a whirlwind week, which included a date in a city park with a backpack containing champagne and plastic wineglasses, followed by dinner in a sandwich shop. We stayed up most nights that week talking and talking and talking...it was like we'd known each other forever.

Fast forward through the subsequent long-distance relationship (two years' worth) to our engagement, my graduation from college, my move to where he was living and our wedding a year to the day after my graduation. I was a teacher, he was an engineer. We hiked, camped, rescued a dog, read a lot of books, worked on our fixer-upper house and talked, talked, talked, just like we had from the day we met. After almost three years of marriage, we conceived our first child, the LB. We were over the moon and he was a beautiful, serene baby. The following year, we moved across the country for the Bear's new job, a major career advancement, and soon after that, decided to have another baby; we had our tiny, feisty-sweet baby girl.

May is a very special month for us. It is the month in which we met (on May Day, how romantic!), became engaged, starting living together and got married.  May also claims the distinction of being the last healthy month in my pregnancies (both were conceived in January). This is because I am a two-time survivor of severe preeclampsia and HELLP Syndrome. Our love, so deeply rooted in delightful May, nearly killed me - twice.

May also happens to be Preeclampsia Awareness Month, which was just made official last fall, though diseases of hypertension in pregnancy have been affecting - and killing - women and babies for all of recorded history. The word "eclampsia" comes from the Greek word for "lightning"; it was what survivors described seeing right before they had a stroke. It is estimated that 70,000 women and half a million babies still die from pregnancy-related hypertensive conditions each year.

You may have seen the untimely (and, for me, horrifying) demise of the character of Lady Sybil on "Downton Abbey," or affected patients on "Call the Midwife"; this disease is not well understood, even today, but it is starting to get more media attention, which will lead to awareness and more research - and possibly, preventive measures or even a cure. As it turns out, my own bouts with this disease are probably related to an unknown autoimmune disorder as well as a blood-clotting disorder; my body is allergic to itself and my blood loves itself too much.

My own experiences with preeclampsia/HELLP have affected me profoundly. I don't want to go into a lot of detail. I have spent years dealing with the emotional fallout of having these diseases. Nothing about my entry into motherhood went the way I hoped it would. I was in kidney and liver failure when both deliveries were induced. I spent months on bedrest, both before and after each birth. I missed my own baby shower. Both babies were born early and had problems as a result. I will always have health considerations because of what happened to my body. After the first time, I had been told it was "unlikely" to happen again. Likely or not, it did.

My experiences were dark, sad and scary. Sometimes I felt dehumanized by medical providers; a little compassion goes a very long way in such negative situations. My husband was always there for me, though. I can tell you that one of the truest measures of a man is his willingness to help you use a bedpan. And his jokes really helped me; my days-long induced labors were the result of having a "rawhide cervix." Our children suffered intrauterine growth restriction because mine is a "womb of doom." See? Funny. Sometimes, comedy is your only line of defense.

I'm doing much better these days. I no longer feel that my experiences in my pregnancies is the defining feature of who I am. I no longer feel that they were my fault. Watching Lady Sybil die was very difficult for me, as was watching characters on "Call the Midwife" die or suffer from the same disease: I am left feeling lucky to have had this disease in the 2000's, not the 1950's, or the 1920's. But women die today too; my childhood best friend, Carla, passed away from a post-natal stroke shortly after I had my first child. She left a newborn and a toddler. I will admit that, in my heart of hearts, I do sometimes feel lucky to be alive.

Dear, thoughtful readers: if you are pregnant, or might be in the future, or if you have a sister, daughter or friend who is in the family way or plans to be, please read, or share, the website for the Preeclampsia Foundation and get familiar with the signs and symptoms of preeclampsia. Doctors are getting better at detecting this disease; they're better at it now than they were even five years ago when I last experienced it but so much still rests on patients monitoring and advocating for themselves.

My little family is the most important thing in the world to me. My marriage is strong, my children are bright and happy and I love my life. I am learning to move beyond these unfortunate experiences and to see the bigger picture: we are okay. I hate to hear about others going through this, though; I wish no woman ever had to. Pregnancy, birth and bringing home a new baby should be nothing but happy. But I know from experience that this isn't always the way it works out. On the positive side, I think it has made me stronger, better able to stand up for myself - especially as a patient - and better able to appreciate the good things in my life. The best one is this houseful of Bears.

Rare photo of Bear faces...the small ones are being silly here.

21 comments:

  1. Thank you for sharing your heartfelt story. I was only vaguely familiar with the condition. I join you in hoping for more research and a potential cure. Your family is a beautiful one, and a testiment to what can happen when we bravely keep moving forward despite pain and disappointment!

    ReplyDelete
  2. (((((HUGS)))))

    I am thankful that there is more information on preeclampsia now. I hope they continue to find more information and hope that some day mothers and babies don't experience it.

    ReplyDelete
  3. Thank you for sharing your story Jennifer, I am so sorry you had such a tough time during your pregnancies. Preeclampsia is still so common, I had a friend who went through it and had to give birth very early, her baby was only 1.5 lbs when she was born (now four years old and coming along nicely.) But there are other who are not so fortunate, like your poor friend. Thank you for raising awareness in this way. Your children are truly beautiful, they have come such a long way and they have your strength(and the Bear's) to thank for that. X

    ReplyDelete
  4. What a story you had to tell! And good of you to raise awareness in your readers. You have a perfectly beautiful family as a result of your fortitude, bravo! Enjoy your very own month. ((hugs)), Teresa :-)

    ReplyDelete
  5. Huge hug. Sharing hardhships to help others is so worthy. You have a lovely family and a wonderful husband abd you are pretty special too :)

    ReplyDelete
  6. I had tough pregnancies and complications too. Not nearly as bad as yours, but I understand what its like to deal with stuff like that. Thank you for sharing, its nice to know there are other people out there who understand. You have a beautiful family!

    ReplyDelete
  7. Thank you for opening your heart up and sharing your story with us. When we are blessed with love so many things are possible but sometimes the journey may be a difficult one. I admire your strength! Thank you for taking the time to pass on your joy with us. Hugs to you and your beautiful family.

    ReplyDelete
  8. Hi Jennifer, I had pre eclampsia with my first baby, thirty five years ago and he was induced two weeks early and then had jaundice and was under the ultra violet light for five days. I was pretty traumatised by his birth but knew nobody else that had been through it and had to go through it all pretty much by myself. After all these years it is heart warming to find someone else who understands. Thank you for sharing your story. I found that the emotional distress does ease over time as the kids grow and I focussed on other parts of life.

    ReplyDelete
  9. Thank you for sharing this. Many of my friends are pregnant or wanting to start a family and I have read the information on the website you linked to. I'm not planning on having children, but I do read some of those so called 'mummy blogs' and sometimes get a bit agitated when I read all the rosy blissful stories mums post there. Things aren't always easy and though I totally understand that most people don't want to share very personal or painful experiences, I think it's important to also discuss these kind of topics, as others going through the same can benefit greatly from just knowing that they are not alone. Looking at some of the comments above, you did just that. And your family looks beautiful!! (I was also thinking how special it is that you have a picture of you and your husband on the day you first met, you guys looks totally in love!)

    ReplyDelete
  10. Jennifer,

    How brave of you to share this. This has moved me to tears.

    And what a beautiful love story, with the best happy ending in those beautiful children of yours.

    Leanne xx



    ReplyDelete
  11. That is a powerful, challenging story. Thank you so much for sharing it. The scene with Lady Sybil was horrible. I can't imagine what it must have been like for you, who has experienced the same condition, to see it acted out in front of your eyes. I am so glad you are coming out the other side of your experience, and that you have such a lovely, healthy family. I hope you continue to heal in all ways as time goes on.

    ReplyDelete
  12. so hard to share such a difficult period in your life but thank you - love to you and your special family Sue x

    ReplyDelete
  13. Jennifer my daughter had a very similar story to yours when she was pregnant with my granddaughter. I tried to find your contact info because I was going to share some of it with you but it is much too long to post in your comments but I could not find it. I am so glad and thankful that you were able to heal from your experience both physically and emotionally. It is wonderful that you are utilizing the benefit of your experience to enlighten others and perhaps contribute to saving a life. That took amazing strength. You have a beautiful family. They are blessed to have you and I feel blessed to have been able to get to know you through "blogland."

    ReplyDelete
  14. We had a friend die of preeclampsia just minutes after giving birth to her second child - I was stunned and horrified. I'm sorry this happened to you, but I am glad you're healing and that you are willing to share your story. I don't think people realize that death is still a risk with childbirth, even in the midst of modern medicine.

    Hugs to you Jennifer.

    ReplyDelete
  15. This is such a beautifully written and
    heartfelt post which must have been
    difficult to share.

    My heart goes out to you and your family.
    You've been through so much.

    You really do look like a perfect couple
    and the image of you all is a beautiful one.

    Take care : )

    ReplyDelete
  16. What a beautiful, yet sad and heartfelt post. Thank you for sharing a very personal and tough story, but one which oozes love for those about you.

    ReplyDelete
  17. What a moving post; happy and sad together. Thanks for sharing your story with us, even if i do have a lump in my throat. ;-)

    And what a treat to see a photo of you and your beautiful family! Your children are gorgeous.

    Gillian x

    ps. I was also channeling the raccoon look in 1999.

    ReplyDelete
  18. A very emotional post, thank you for sharing your story. It can't have been easy. My heart goes out to you & all the other mothers or families that have experience this ♥

    ReplyDelete
  19. You have a beautiful, wonderful family. I'm so sorry that your early experiences of motherhood were so difficult and frightening.
    I really enjoy reading your blog, you have a way of writing which draws the reader in, I hope that this post will help other women who have had this experiance.
    Hugs
    Gerrie

    ReplyDelete
  20. I only just read this post and have been incredably moved by your honest and heartfelt words. Thank you for sharing your story, the good and the bad, I am sure that it will help many of your readers.
    Hugs,
    Elle

    ReplyDelete
  21. I am so happy you survived, and have such a beautiful, loving family. I hope sharing your story will help other young women,

    ReplyDelete

Thank you for leaving a comment. It's so good to hear from you! I don't always have time to reply but I try to answer questions when I can.

Related Posts Plugin for WordPress, Blogger...