PKD Connection Blog

PKD Will Not Beat Me

A letter from a PKD patient to her mom

Dear Mom,

Happy Birthday! You are 61! Wow! The first word that comes to mind is ‘hallelujah!’ With living cross-country from each other—from California to Pennsylvania—for seven years now, I am so grateful to be in Pennsylvania with you today to celebrate this monumental occasion. You are the oldest to live in our immediate family with PKD. You are breaking records and I am so proud of you and happy for you and our family. With the special bond that we share, I can’t fathom how hard it was for you to lose your mom when you were in your early 20s. She was 53 and tirelessly battled PKD until it unfortunately won. I regret that I didn’t get to meet the woman who created you. I sometimes imagine the three of us together. I know I would have loved her.

Although your overall PKD health is doing well and you haven’t had to undergo a transplant or dialysis yet, you have seen and endured so much of PKD from an emotional perspective. You lost many loved ones and watched them suffer from this disease. You gave birth to me knowing there was a 50 percent chance I would inherit this devastating disease that took all of your family members away from you. Then, you received the gut-wrenching news when I was 10 years old that I indeed inherited PKD. I was too young to grasp the significance of this, but I remember you crying on the car ride home from my diagnosis. I can’t comprehend what it must have been like to raise a sick daughter like myself.

Only you, Dad and I fully understand the depths of how awful those days were in the hospital. Even though I may seem frustrated that you get worried when I call at an unusual time or don’t immediately respond to your text messages, I get why you still can’t shake worrying about me. I know that all of what your sweet eyes and huge heart had to see and feel as a parent can’t be erased. I just wish you wouldn’t put so much stress on yourself. I hope the pain lessens with time and that many more good memories arise to one-by-one replace the hardships that you have had to deal with.

I sometimes feel that it is easier to be the patient than the caregiver. I say this because I’ve seen the look in your eyes when I’m sick and I can tell that you are going through just as much as me, if not more. I wish I could take some of the weight off your shoulders. I want you to know that whatever happens to me, it will be ok and that I’m grateful for the life that you have given me. Please know that I have never felt one ounce of bitterness or anger that you passed on PKD, but rather I’m so thankful that you brought me into this world. You have shown me love like no other. Now, as a 34-year-old woman, I am able to step back and appreciate what you have dealt with and all you have done as a PKD mom raising a child with PKD and multiple other health issues.

In honor of your birthday and Mother’s Day, I want to thank you for the extraordinary life you’ve given me. For always believing in me and doing everything you could to make me happy. For making my world feel normal through all of the health chaos. Like when you decorated my hospital room for Christmas and when you wheeled me out of my hospital room to the Hershey Medical Center parking lot and we sat in your car blaring Aerosmith music to escape the reality of what was going on. Our PKD journeys have been unique, challenging and emotional—but our love is precious, our bond is irreplaceable and our laughter, love of life and appreciation of the little things can never be taken from us.

To all moms who are sick or have raised a sick child and battle with the emotions of feeling helpless, please know that your sheer presence is all we need. What keeps us fighting is knowing that you are there in case anything goes wrong, to look into your eyes for strength and to hold your hand. Always knowing I was loved and that I had something to fight for helped keep me alive and that remains true today. Thank you, Mom, for giving all of this to me. Most importantly, thank you for loving me fiercely. Happy early Mother’s Day to all of the brave moms out there who are fighting the good fight with their children and loving them with all of their heart.

I love you bunches and bunches Mom. Happy 61st birthday!

Love,
Your grateful daughter Valen

Comments

  1. maureen gardner says:

    Wow Valen!! THANK YOU. You have said it all so perfectly. All the best to amazing you and your wonderful Mom!

    1. Valen Keefer says:

      Thank you so much sweet Maureen!!! I appreciate you reading my blog and for your continued support!

  2. LuAnn Scruggs says:

    Just beautiful Valen , your love is abundance ,overflowing and I know your mother is so proud of you and so grateful to have you alive and living this new found post transplant life!!!

    1. Valen Keefer says:

      You’re the sweetest LuAnn! Thank you for your beautiful sentiments. They mean so much!

  3. Barbara Grove says:

    Valen, one word comes to mind. Amazing. Your spirit is truly amazing. Your determination and and faith, Amazing. I wish you and your mom Many Birthdays and Mothers Days to come. May God Bless you both. You are both Amazing

    1. Valen Keefer says:

      This warmed my heart! Thank you Barbara for your heartfelt sentiments. This really touched me. I’m grateful for amazing friends like you!

  4. Amy says:

    She’s not the average mom- she’s “super mom”. I wish you many more good years together!

    1. Valen Keefer says:

      This made me smile. Thank you so much Amy! She sure is a super mom. 🙂

  5. Carla Markley says:

    Valen, this letter to your lovely mother Pam is one I’m sure she will always cherish. Reading it, I can see it’s is written with Love from the depth of your heart. Thank you for sharing this with all of your followers.

    1. Valen Keefer says:

      Thank you very much dearest Carla! Your friendship and continued support means a whole bunch to me. I hope to see you soon! XO

  6. Janice Peters says:

    Happy Birthday Pam..I am so happy that I know your beautiful daughter and that now I know you. Enjoy your birthday month and Mother’s day. Thank you for inspiring your daughter and for all the joy she brings to all of us. I hope California is in your future and that we can continue our friendship. Hugs, Janice

    1. Valen Keefer says:

      Hi Janice,
      Thank you for this beautiful birthday message to mom and for your super sweet sentiments. I read this to mom and she was smiling so big. She said “I have a friend in CA.” It was dear. I can’t thank you enough for welcoming my parents with open arms to your table at Corks. You have such a beautiful, kind and sweet soul and my life is so much richer since meeting your amazing family! We’re sending love and big hugs from PA! XO

  7. Pat Rauth says:

    What a beautiful letter to your Mom, Happy Birthday and many many more birthdays and Mothers Day for you and your beautiful daughter.

    1. Valen Keefer says:

      Thank you so very much for your beautiful birthday and Mother’s Day wishes! They mean a whole bunch!

  8. Ann says:

    Valen – thank you for taking the time to expand your brief message to me into more details around what I can be doing to help my son. Your comment about wanting to take on your mother’s pain and worry is so incredibly balanced with a parent’s want to take away all pain and hardship from her/his children. I have only been following your blog for about a year-and-a-half and I’m not sure if your mother has ever taking a stab at writing her experience raising you, but that would be something miraculous to read. Your parents have obviously done an amazing job. You stare PKD straight in the face and fight and encourage others to fight. Even with so much to feel sorry for or sad about, you find the strength to push forward. I hope I do half as good of a job as your parents did. All I want is for Logan to have a voice and sure footing in his PKD Journey.

    1. Valen Keefer says:

      Dear Ann,
      I read your message several times and very much appreciate your kind words and honesty as a parent. I trust Logan is going to be fine, because he has amazing parents. Believe that your support will give him the strength and fuel to keep fighting. That is what my parents love and my husband’s love does for me. I am so sorry that you are going through what my parents did by raising a child with PKD. It is not fair and is so emotionally and physically painful.
      Ironic what you said about my mom writing a post. I’ve asked my parents several times if they would. My mom said she isn’t a writer like me and isn’t inspirational. I told her just to write from the heart. They’ve been through so much and I think a blog from them would be amazing. I’ll continue to encourage this idea and hopefully it will happen some day.
      Holding dear Logan, you and your family close at heart. We’re in this together.
      I apologize for the late response. I’ve been sick with sepsis for several weeks. XO

      1. Karen Fitzgerald says:

        Hi Valen!

        Sending you hugs, and hope you are feeling much better! I’m glad you had a fun visit with your Mom-she’s a doll! 🙂
        Summer’s just around the corner–ENJOY!!

        Love,

        Karen

        1. Valen Keefer says:

          Hi Karen!
          Thank you! I am finally back in CA! Yay!!! I hope summer will allow you to slow down and have fun with your family. Hope you are doing well.
          Love,
          Valen

  9. Nicole says:

    Beautifully said Valen!

    Having PKD myself pales in comparison to thinking about my 3 kids or 7 grandkids having it! Your mom has handled it so well and is an inspiration to us all!
    Bless you both!!

    1. Valen Keefer says:

      Thank you dear Nicole! Your family and grandkids are blessed to have such an extraordinary, kind and giving mother and grandmother who is fighting and working hard to create a better future for them. XO

Leave a Reply

Your email address will not be published. Required fields are marked *

Join the fight against PKD

Want to hear more stories like these? Any donation helps the Foundation continue supporting patients and highlighting their stories