My Almost Non-Existence

Before reading this post, please note that this is a sensitive topic for many. It is not meant to take any sort of political stance on the issue. However, I felt compelled to share with you how this topic has shaped my life.

“I wasn’t going to tell you this, but since your biography will soon be published, this is something you must know.” My mom and I were sitting face-to-face on my parents’ living room couch as she continued, “When I was pregnant with you, the doctors scheduled for me to have an abortion.”

My mom and I are best friends. We tell each other every little secret. I couldn’t imagine that she would have kept anything from me. I was 25 when she revealed this startling news to me. I could tell by her expression that she was concerned I would be devastated by this revelation.

I was not upset at all. Instead, I felt an overwhelming sense of respect for my mom and all that she has been through. I tried to put myself in her shoes. At the time of her pregnancy with me, she was married, 26-years-old, and had a 6-year-old son. Her mother had died 6 months previously, from PKD. My mom and her son had PKD and neither she nor my dad wanted to pass this terrible condition on to another child.

I intently listened to my mom as she took me back in time to relive this very critical part of my existence. She told me that her gynecologist suggested that she have an abortion. She knew that abortions were illegal at the time, but her doctor assured her it would be considered a “medical necessity” and would be approved. I followed her downstairs where we now sat in front of my lavender toy chest from when I was a little girl. She opened it and pointed to a pink piece of paper that was hidden under some family photo albums. That pink document was the paperwork for the appointment made to terminate her pregnancy.

We sat cross-legged on the floor as she told me that in the brief period before the scheduled date, she wasn’t sure that having an abortion was the right decision. She then shared a profound story: One day, before her scheduled appointment while taking a walk near her apartment, my mom spotted a woman pushing a little girl in a carriage along the sidewalk. She stared at the little girl in the carriage. The woman(who she assumed was the child’s mother)never looked at her, but the little girl continued to glare at my mom with a penetrating look. They were across the street from her but as she passed by, the little girl and my mom continued to stare at each other, not breaking eye contact for one second. She knew immediately those beautiful little eyes were telling her to have the baby.

The next day, my father drove her to York Hospital where the procedure would take place. Mom was still undecided and very conflicted. They sat in the car in the parking lot for a long time, talking. Finally my dad told her: “You don’t have to have this abortion if you don’t want to.” That’s all my mom needed to hear. She told me that she was so happy and relieved and that today they are both thankful for making the right decision to bring their second child into this world.

The story of the little girl in the stroller is so powerful because it puts into perspective the impact one person can make on someone else’s life, without even speaking. At the time, my parents were not sure it was the right thing to bring me into this world. I suspect my mom was looking for a reason to make the decision to have me, and the baby in the stroller was the answer. But how many things could have happened differently? What if the mother had been there 10 minutes earlier or later? What if she had walked faster or slower? What if the baby was asleep and never made eye contact with my mom? I think it was a test to make my parents sure that they wanted me because of how they would be tested later in life. They committed themselves to raising me to become the woman I am today: Independent. Strong. Loyal. And a real fighting spirit!

This was the first of many tests for my parents, but was by no means the last. I am so proud of my parents and thankful that they brought me into this world and I live each day to make them proud!

I was fascinated by this news and very proud of my mom for being so strong. I had lived a quarter century, oblivious to the fact that my life was so close to being ended, even before my eyes saw the world outside of my mother. I find it quite intriguing–but not surprising– that I was fighting for my life even before I was born. I believe this helped to shape me into the fighter that I am today. The fighter that says ‘PKD Will Not Beat Me.’

29 Comments

  1. Jody Balaun

    Valen…..what a beautiful & brave story to share. Your blogs are so important because of the lives you are shifting with your rare honesty. (I love your parents, by the way! I can’t wait to meet them!) With our own 21 yr old daughter recently diagnosed with PKD, the topic of her own future pregnancy someday is a sensitive topic. She understands the high risk of passing the disease to her own child & knows she’ll have to decide on her own pregnancy or adoption. I’m confident she’ll make the best decision for her & we’ll be there to support her no matter what. My own mother expresses sadness all the time that I have this disease & she wonders out loud if she should have had me…I’m glad she did! Having perspective is so critical. I’m almost 54 & I had an incredible life for 50 yrs before my PKD symptoms began. And, I’m having an amazing life now…just with bigger challenges. Our 21 yr old is living her life too, knowing that one day she may face PKD symptoms. In the meantime though, having PKD may make my life more painful & uncertain but it’s also made me appreciate the days I have. They’re brighter, more meaningful, more purposeful & richer. And, it’s because of sweet friends like you, we’re hopeful we can live our lives positively, even with the yuckiness of PKD…..yep, PKD will not beat me! Hugs….Jody

    Reply
    • Valen Keefer

      Dear Jody,
      Oh how I love you and your family. Your beautiful words of support and encouragement mean more than you’ll ever know. You are a very special woman and I am so very thankful our paths have crossed. I know we were meant to meet. Thank you for following my blog. I always love to hear your thoughts. I would love if you could meet my parents. You are so strong and have the most amazing family. It is meeting families like yours that make me thankful for having this disease because we probably would not have met if it weren’t for PKD. We will fight together. PKD will not beat us! Sending big hugs!

      Reply
  2. Sara

    I was not diagnosed with PKD until the 7th month of my 2nd pregnancy, which was twins. I’m so fearful that any or all of my children may end up
    With this disease. I’m glad I had them before I found out, because going through what I am now with dialysis & everything, I’m not sure I would have chosen to have them. I thank God every day that they are here.

    Reply
    • Valen Keefer

      Dear Sara,
      Makes me so happy to hear that you are thankful for having your children and it seems as though you were diagnosed with PKD at the right time for you. Everything always seems to happen at the right time in our lives and fall into place. I hope that your children will end up on the positive side of the 50% chance we have of passing it on. I know a family that the mother has PKD and had two children that have been tested and do not have PKD. I love to hear hopeful stories like that.

      Reply
  3. Fleiter

    Great story. But abortions were not illegal 25 years ago. In fact, they were actually quite common.

    Reply
  4. Regan

    I have PKD along with my father, grandfather and uncle. I have a one year old daughter and had a rough pregnancy (a fibroid and kidney stones) but she is very happy and healthy. This may sound weird to some but I think I live a healthier lifestyle because of PKD. I eat better, exercise, drink lots of water and monitor my blood pressure.

    I can’t imagine the weight of the decision to terminate a pregnancy on your mom. Nor can I believe doctors would recommend terminating a life over PKD even 25 years ago. So brave of your mom to tell you the truth! A life is precious and my dear so are you. I have read your book and commend you for sharing your story. I know there are many that are far worse off than I and I continue to look at PKD as a blessing in an ugly disguise.

    Reply
    • Valen Keefer

      Dear Regan,
      I commend you for looking at the postives that PKD has brought to your life. I try and do the same!
      I know I find it hard to believe too and was so grateful that my mom shared the truth with me. Aww, thank you so very much for your kind words and for reading my book. How did you hear of it? Have our paths crossed before? Your last sentence made me smile and is so perfectly said. Thank you for your message and for following my blog. 🙂

      Reply
  5. TRINITY WALKER

    W O W …..

    Reply
  6. Landie Acker

    Thank you for sharing your story’. I myself am 33 living with PKD. I lost my mom in 2008 to the disease. My grandmother ( my moms mom) was able to get a transplant and to this day …. 10 yrs later is still doing well. I enjoy reading your blogs because not many people know what PKD is, so it makes it hard to have many to talk with about it. Again your story is an inspiration and gives me hope! God bless! <3

    Reply
    • Valen Keefer

      Dear Landie,
      I am 29, so we are close in age and it makes my heart hurt to hear that you have lost your mom to PKD. Amazing that you grandmother had a transplant and is doing well after 10 years. That is so fabulous. Thank you so much for following my blog and it makes me very happy to know that you are enjoying it. I will continue to share my story in hopes that more and more people will learn what PKD is. I hope this blog will provide you with support and allow you to connect with other PKD kindred spirits. Never lose hope! 🙂

      Reply
  7. Phyllis Hume

    Wonderful story. I was diagnosed at 18 with PKD (the same year my father died of complications of PKD). It was recommended at that appointment that I have a tubal ligation. My Mom disagreed and said it was my decision when the time came. I did have 2 children in my early 20s. When it was time to test them in their late teens it was one of the worst times in my life. They are now 28 and 29 and still testing negative for any signs of PKD. I am not sure how I got so lucky but I thank God everyday for his blessing.

    Reply
    • Regan

      Phyllis-

      My mom was told that I wouldn’t be able to have babies. She was crushed but I didn’t believe her doctor because everything I read said it was completely possible. I hope you kids stay symptom free. I had my 1 year old at 32 and was a high risk but I also had a fibroid which complicated things. We aren’t testing our daughter because I don’t want her marked with a pre-existing. Before I was married I couldn’t get an individual plan and still can’t get life insurance.

      Regan

      Reply
      • Valen Keefer

        Regan, thank you so much for sharing with Phyllis. Makes me so happy to see others connect with each other, that is what this blog is all about. 🙂

        Reply
    • Valen Keefer

      Dear Phyllis,
      What a remarkable story! I have not met anyone yet that was told to have a tubal ligation. Good for your mom to speak up. That is so WONDERFUL that your children are still testing negative at 28 and 29. That is quite promising and so hopeful for those out there thinking of having kids. I hope that your health is doing well. Thank you for sharing your hopeful and positive story!

      Reply
  8. Tammie

    Thanks. Double W O W

    Reply
  9. Connie Moss

    I love your stories Val. We all love you! Thanks to your mothers bravery. We all, your PKD family can enjoy knowing you too. You are our Angel. Give your mom a kiss and hug from all of us. XOXO

    Reply
    • Valen Keefer

      Dear Connie,
      You are so so sweet. I am very grateful to have you a part of my PKD family. We are one strong and awesome family. Thank you for your love and support. Sure does feel wonderful to be surrounded by such special friends!

      Reply
  10. Brian

    Bill & Pam,

    Your decision definitely had a profound impact on me. Thank you!! 🙂

    Brian

    Reply
  11. Katherine Miller

    Dear Valen,

    What a beautiful, yet profound story, we in the would of PKD are so familiar with the tragedy associated with the disease.
    Your story is so touching, my wish is that you continue to tell this story so more can hear it. I lost my mother to PKD and she had three children without PKD so you never know what fate has in store for us. TY

    Reply
    • Valen Keefer

      Dear Katherine,
      Thank you so much! This is my mission and my passion and I will for sure continue to tell my story. Thank you for encouraging me to do so. It is people like you that help me remain positive and energized to do all I can to make a difference in the world. I’m so sorry that you lost your mother and thankful to hear that she had 3 children without PKD…I am hoping you were one of the three.

      Reply
  12. Monica

    Valen, Thank you for sharing you story. My husband has PKD and so far one of my children has been diagnosed. I have 2 more children that haven’t been tested yet. It is hard for parents to come to the realization that their genes passed this on to our children. I am dedicated to do whatever I can to help the PKD Foundation find a cure and end this family tradition. My daughter Ashley is struggling with the thought of someday having children and I wonder what I would have done about having children if I had known. I am so glad I have my children and wouldn’t change it for the world, but hate that they have to endure what their great grandother, grandmother and now dad is going through. Thank you for sharing your experiences, I love reading your posts.

    Reply
    • Valen Keefer

      Hi Monica,
      Thank you for your dedication to helping the PKD Foundation and everyone out there suffering from this disease. Your family is lucky to have such a strong supporter, like yourself. I’m so happy to hear that you love reading my posts. Thank you very much! I always say that I was not blessed with good health but I was blessed with wonderful parents. Your children are lucky to have a loving and devoted mother and you will all get through whatever challenges the future has in store for your family, together. 🙂

      Reply
  13. Heidi

    Valen, That was an outstanding post that I think will be helpful to many as they struggle with the difficult decisions about pregnancy and PKD. My parents already had me and my brother when he was diagnosed, and their doctor was FURIOUS when the went ahead and had a third. I was diagnosed at age 18, but the the diagnosis didn’t really effect my decision to have children because my father, uncle, and aunt all lived with PKD and took it in stride and at that point only my father had reached kidney failure and he had dealt well with dialysis and transplant. I was glad to be alive, so it didn’t seem like a reason not to have a child. Then I got involved in the PKD Foundation after my daughters were born and heard your story and that of many others and realized that PKD could be a whole lot worse than what I had seen so far in my family. I’d really had no idea. After that and watching my dad struggle with some of the complications that come from long term immunosuppressant meds, I did begin to question the decision I had made. And I do look at my daughters and get tears in my eyes when I think of what I might’ve passed on to them. So, hearing this newest reveal in your life story, and how glad you are to be here despite all you’ve suffered through AND seeing the amazing way in which your life and your challenges are changing the world and helping so many is encouraging and helps reconfirm the decision I made 11 years ago to have children. The thought of passing on PKD is a horrible one… but then again… it is what we pass on that shapes the future. While I knew I could pass on PKD, anyone, ANYONE can pass on a challenge to their child. My younger sister (the one the doctor was irate about) also did end up having PKD. In her quest to have a child they ended up in a situation where she was given the choice to do embryo selection… they could test each for PKD to ensure that she had a PKD-free baby. It was a hard call, but they didn’t do it. I could not have done it either… how do you know that the PKD-Free baby won’t have a worse fate, inheriting a tendency for something even more challenging? How do you know that the PKD baby isn’t going to be amazingly bright or, well, turn out to be someone like you, Valen, inspiring so many? Where do you draw the line? Do you take out PKD but still let the baby have a chance at a learning disability, or asthma, or autism?Sometimes we just can’t try to control everything, but have to let fate take its course, and make the best of where it leads us. It’s all very individual and it all depends so much on what your own experience has been.
    Thanks for sharing. Again!

    Reply
    • Valen Keefer

      Dear Heidi,
      I type this with tears in my eyes after reading your touching message. I loved your profound and beautiful thoughts as you shared your personal family story and the decisions those with PKD face. Your message has inspired me in many ways. Noah and I had talked about the idea of embryo selection and I found it very interesting the valid point that you made that the child could face an even worse challenge than that of PKD. I am curious what challenges your dad faced due to the immunosuppressant meds amd would appreciate hearing more of that. I hope you and your family had a wonderful Thanksgiving. Sending a big hug your way. 🙂

      Reply
  14. Andrea

    I have just posted a comment earlier.
    I have subscribed too, to this blog. I find comfort here.
    You are more of a fighter than I feel right now, and all my life I have been told I am and was a fighter.
    I remember very vaguely everything that happened to me between February and July, 2012.
    I was feeling overwhelmingly fatigued in February, and extremely bloated. Doctors said I have PMS or a form of IBS, caused by stress, when I pointed out a lump coming from under my liver. A nurse said ” thin people can feel their liver “.
    I have been a stone and a half lighter than that, and never felt my liver under my skin. They gave me mint tablets and sent me home, to return in 2 weeks if I feel the same.
    I work long hours, and couldn’t look after my health as I should have. 1.5 months later, I had a CT scan, an ultrasound and was told in 3 abrupt minutes, that I have PKD, that my right kidney is 1.5kg, filled with cysts and stones, dead and in putrefaction, and that it needed to be taken out. I was then left on my own, at 9Pm, on the hospital bed, countries away from my parents and brother, after my 3 months-into relationship boyfriend had to leave due to visiting hours; and I had to face the truth and the shock on my own.
    I cried for 2 hours on the floors of the ward, a floor below.
    I felt crushed and still feel like this.

    This is very personal, and as you said too, this isn’t anything that anyone NEEDS to know.
    But my mother discovered she was pregnant with me when she was already 7.5 months into the pregnancy. She was 35, and we spoke on the phone last night, when she said she would move mountains for me and do whatever she can so that I am well,
    My heart breaks. I want so many things from life.
    My boyfriend, currently my fiancee, asked me to marry him on the 2nd this month. We are looking forwards to visiting my parents, where he officially and traditionally wants to ask for my hand from my father. I couldn’t be happier with any other man, but my disease feels like a stone in our way. He thinks differently, that I am a normal person, and can lead a normal life. I don’t feel like anyone else around me.
    My father regrets passing this to me, as he has PKD too. I really am afraid of passing this to my children, because as you know, anyone with PKD will have been through hell and back because of this disease.
    When I read about PKD, and the words ” no cure ” ” no treatment to prevent ” make me want to burst into tears, cry loudly and take off this pressure by breaking something. I live with a constant fear of dying young. You are a perfect example of a fighter woman, you have the ambition and motivation to fight whatever comes in your way.
    I have been repeatedly sent home on more and more morphine, because the NHS haven’t kept me in hospital for more than 4 days/hospitalisation, though my health was deteriorating fast. There is no follow-up plan to control this, they have asked me to come back should I start feeling sick. It took 3 months to develop a 3 mm stone in my only kidney. It took them 2 months just to offer me an appointment with my surgeon. I feel I am leading a battle doomed to fail. I need a hug, because nobody can give me my health back.

    Reply
    • Valen Keefer

      Hi Andrea,
      Thank you so much for sharing your health history and your personal thoughts. I can completely understand and relate with your frustration and your fears. I have learned to never underestimate how much our bodies can overcome and also the power of positive thinking. When I was diagnosed with his disease at 10 years old, I was told this was one of the “best disease to have as it is slow progressing.” Each person with PKD seems to have their own unique story of how it has affected them. From myself with issues since I was young to other people in their 70’s that have not been greatly affected and still have their original kidneys. Even though there is not a cure yet, I encourage you to look on the PKD Foundation website http://www.pkdfoundation.staging.wpengine.com, as there are many exciting trials going on that shows that it is hopeful that there will be a treatment in the near future. I have struggled with the thought that I was holding my husband back in life because I am not so called ‘normal.’ He told me a very powerful point. He could have married someone completely healthy that a month later got in a bad accident or diagnosed with a terminal disease. Or that something could happen to him. Nobody in life knows what the next day or the future holds for them. That is why we must embrace every day, who we are and make the best out of the hand that we have been dealt in life. If our partners unconditionally love us, then we should appreciate that and not question it. That is what I try and tell myself! 🙂 This journey with PKD is not always easy, but know that you are not alone. Stay strong, stay positive and stay healthy my friend!

      Reply
  15. Teri

    The stories are amazing, I to have apkd was diagonised 2 years ago an have 5 children an now know the disease has a 50% chance wil be passed on to my children an have told my children they might get pkd too,for I have a grandson now he is the apple of my eye an always know when I look at his beautiful face he could have it too or his mum my daughter, but readin these stories gives me hope for them an other families and know there is heaps of support out there of our children an their children

    Reply
    • Valen Keefer

      Hi Teri,
      Thank you! 🙂 I hope that your health is doing well. I wish your 5 children and your grandson the best of health and am sending lots of positive thoughts that they are on the good side of the 50% chance of inheriting PKD. I am glad to hear that you find comfort in knowing that there is tons of support out there and right here for you, your children and their children. Please know that you are not alone. I am so glad that you have found my blog and hope you will continue to enjoy it!

      Reply

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