Working on “Finding a Balance”

Dear Friends,

I am embarking on a new adventure and this is an introduction. My second poetry book, “Finding a Balance” is almost ready for publication and it’s nice to not be such a novice the second time around. This book isn’t just about sharing more poems I have written. It’s not only about me. It holds a deeper meaning; the new adventure part. The proceeds will be donated to an organization for a purpose close to my heart and my family’s. I’ll begin, though, with a back story…

Part I:
After three years of abdominal pain and ongoing tests, on October 4, 2012, our daughter, Stephanie, was diagnosed with Primary Schlerosing Cholangitis (PSC). She was 21 years old. Her doctor was the head of the Gastroenterology department and was extremely competent. He didn’t beat around the bush. He told us this wasn’t good. Below is a brief description:

Primary sclerosing cholangitis (PSC) is a very rare condition where the bile ducts inside and outside the liver become inflamed, leading to scarring, narrowing and blocked ducts, potentially causing a build-up of bile in the liver, and in some cases cirrhosis. Patients with PSC are at a high risk of developing liver cancer. Symptoms begin gradually with abdominal pain and itchiness and include worsening fatigue and, later, jaundice. Liver transplantation is the only cure for prolonged life. This is usually needed within 10 years of the diagnosis, but each patient’s case is different. 

I’ll try to keep the drama at bay, but I’m sure you can imagine our reaction. Our daughter doesn’t drink or do drugs so there is nothing she did to provoke this diagnosis, which is why it’s called an auto immune disease. This was a shock to our entire family. My husband and I had many emotional moments, wishing we could take her place. We were paralyzed of doing anything that didn’t need doing for the rest of that year, except for the necessity of living. We asked God why…why Steph? She has a heart of gold and is simply a nice, caring individual. Many have asked these same questions and there are still blanks waiting to be filled.

Since 2012, she has had symptom flare ups with several ER visits, but otherwise, on the outside, she’s beautiful and looks perfectly healthy. The doctor told her to live life to its fullest. That was his profound advice. She has a stellar attitude. She lives in the HERE AND NOW and there is no other option. She is due to graduate this year with a Bachelor’s Degree and has been busy with school, friends, her boyfriend and of course, family, with no time to sulk. She is human, though. She has broken down at times, but I think, as her parents, our score is higher.

So…I’m telling you this not for sympathy but to bring awareness to this horrible, slow progressing, life threatening disease and most importantly, the need for organ donors.  

Part II:

All proceeds from my book will go to The Chris Klug Foundation (www.chrisklugfoundation.org), also found on Facebook.
Chris (born November 18, 1972) is a professional alpine snowboarder. After receiving a liver transplant in 2000 to treat PSC, he went on to compete in the 2002 Winter Olympics in Salt Lake City, winning a bronze medal in the Parallel Giant Slalom. This was the first and so far only time a transplantee had competed in the Olympics. He also won a bronze medal and lit the torch at the 2002 National Kidney Foundation U.S. Transplant Games. In 2004, Chris released a book called To the Edge and Back: My Story from Organ Transplant Survivor to Olympic Snowboarder. (Wonderful book of inspiration and hope)

chris klug foundation

Below is an overview and mission of his Foundation:

Founded in 2003 by liver transplant recipient and Olympic snowboarder Chris Klug, The Chris Klug Foundation is dedicated to promoting lifesaving donation and improving the quality of life for donors, donor families, organ transplant candidates and recipients.
CKF is passionate about sharing the message of donation, and educating people on the impact one person can have on the lives of so many others. Over one hundred and ten thousand people are currently on waiting lists for solid organ transplants across the U.S.A. CKF is devoted to making a difference to those waiting for a second chance. We are also there to help promote the message of organ donation.
Working with young people across the nation, CKF provides campaign materials and information for “Donor Dudes” chapters in high schools and college campuses. People everywhere are touched by organ donation and transplants, and we want to get the message to everyone.

The publication for my book will be at the end of this month or beginning of February. I’ll do a separate post when it’s available and again, I’m very excited for this new collection to have a greater, deeper purpose.
Our life now is about “Finding a Balance” between PSC and all the good things!

Someday Stephanie will need a liver transplant so becoming an organ donor is an unselfish way of giving another soul a second chance. 

Thanks so much for reading and I wish you all Happiness and Good Health!
If you’re so inclined, prayers and positive thoughts
for Stephanie will be greatly appreciated.

Lauren
♥ ♥ ♥

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72 thoughts on “Working on “Finding a Balance”

  1. Dear Lauren.. you know without a doubt you have my thoughts and energy sent to your daughter as we have spoken upon her health before.. She is often in my thoughts as I read your poems.. and I am pleased your daughter is living in the moment of now..
    So many forget this simple principle of life.. And I pray that Stephanie’s health improves and that further developments can be made to improve her symptoms to restore her to good health..
    Now I can not remember if I shared this link film with you before https://www.youtube.com/watch?v=f_stX1W4oI0 But it is called Grounded.. its an hour long film… But I do hope you view it and perhaps consider using some of its healing … so simple but very effective..

    I think your production of your second book is amazing and your devotion to such a worthwhile cause is admirable .. As you all are as a family..

    Love and Blessings your way Lauren… You and Stephanie are in my prayers.. ❤ Hugs my friend Sue xxx

    • Hi Sue, You’re right, I have no doubt we’re in your thoughts and your entire comment touched me to my soul. Thank you so much! I will definitely watch the video and appreciate you sending me the link. Any help is welcomed…I am also grateful for your kind words about my book and what I’m doing with it…it feels good to do something good out of this…sending you much love and many hugs and I can’t thank you enough, Sue, really….xoxo

    • Thanks so much for your well wishes and book wishes, Naima! I appreciate them and yes, she’s very brave and strong and we strive to match her bravery and strength. It’s not easy, but has to be done. Much love to you, too, and thank you again, my friend…

  2. Hi Lauren,

    I’m so sorry to hear about your daughter. My brother suffers with many chronic illnesses including Fibromyalgia. He will have it for the rest of his life. So I can understand your pain when it comes to a loved one suffering. Everybody suffers as well, the whole family. Positivity goes such a long way and I am glad Stephanie has so much of that in her life, it makes it so much easier even if its just to get them through the rest of the day. Sometimes you have to champion them along but it’s worth it. Also, its not until something like this happens that you see the world in a whole new perspective. You appreciate things you wouldn’t think twice of before.

    Good luck with your new book, I am very excited for you and I am sending love to all your family.

    Bianca
    xoxox

    • Thanks for your comforting words and understanding, Bianca, and I’m sorry to hear about your brother, too. My niece also suffers with that and it’s been really tough functioning…I’ll keep him and your family in my prayers, as well…
      Even though Steph is the one affected the most, she’s so busy and doesn’t really think about it unless symptoms flare up. So as her parents we tend to worry about her more..but we’re all trying to be positive and when she’s feeling fine it’s as though PSC doesn’t exist. It’s kind of easy to forget about it. Then she gets the pain and we’re reminded all over again that it’s reality. And yes, life is viewed now through a whole different perspective. No days are taken for granted. Thanks for the book wishes and your loving comment. I truly appreciate it…much love and many hugs to you, too..xoxo

  3. What a great post Lauren and how wonderful that the creativity you have is going to be put to such great use. It’s something we can do in order to give a bit back. That is why proceeds for my new book are for the MS Trust.

    Steph is an inspiration to me, and I’m sure to many others. She is spreading, maybe without knowing, her strength among us all and I wish her all the very best in her degree and in whatever she does to follow. But mostly I wish her happiness and contentment. I know she will get through this very traumatic process because she is surrounded by the love of her family. You are doing a great job; the love you have shines through all your posts. Stay strong, all of you. Love and big hugs ❤️ Xxx

    • Thanks, Chris, it does feel good to do something like this and I think it’s great of you doing the same with the MS Trust.
      Your kind words about Steph’s strength go deeper than you can imagine. She probably doesn’t even think twice about her attitude because she’s so busy with the day to day routine. And your words about the love of our family warm my heart, too, really they do. She will get through this and so will we and I hope by donating the proceeds to Chris’ Foundation it will help in some way for her and others in similar situations.
      Thanks for your strengthening words that will stay with me and all of us. You have been a pillar to me in this WP family and that’s something to not take for granted. Sending much love and many hugs back to you, too, my friend…♥ xoxo

  4. How sad to read this about your daughter Lauren, but I’m glad you all are keeping as positive of attitudes as you can. Miracles do happen and perhaps other options for treatment may be something to consider. Have you considered a consultation with a naturopath too? Perhaps another route to consider. It’s always a good idea to consider all options.

    Lots of hugs and congrats on your book,G

    • Thanks so much, Geraldine, and we do believe in miracles, too, so who knows what will happen in the future! We haven’t looked into naturopath but thanks for the idea so now we will! It’s not about staying on the one path; other options are good and could be the answer…big hugs back and thanks again, my friend! ♥

      • Good to read that you aren’t giving up and are considering other treatment options too, Lauren. Immune disorders are something that I’m sure a good naturopath could definitely help with. Such an intrinsic part of being healthy and as they take a more wholistic approach, I’m sure a consultation would be helpful.

  5. Beautifully, bravely shared, Lauren, and you must know my prayers and thoughts direct healing towards Steph and you and all your lovely … loving … family. Congratulations on you upcoming book and I will be among to first to purchase and help to support such a worthy important cause (and, not least, because you poetry is beautiful and inspirational while offering faith and hope and many other positives … which, of course, is not always easy to do) Much love, Diane XO ❤

    • Thanks so much, Diane! I know you are a faithful pray-er and friend of positive thoughts and as I told Chris, you have also been a pillar for me in this virtual community and for that, I am grateful and it’s not something I take lightly.
      Your support for my book is also appreciated and I hope donating the proceeds to this foundation helps not only Steph but others who are dealing with PSC or similar chronic diseases. Thanks also for the book complement!
      Sending you much love and big hugs, my friend…xoxo ♥

  6. So sad to hear this about your daughter, dear Lauren! I wish you all much strength and love to deal with any bump, hill or mountain on the road that’s to come. I hope there will be a donor for Stephanie when needed, so she will be cured. On the other hand, great to hear your second book is coming soon! And wonderful to have such a good cause for it… Thinking about you all! Loving hugs ❤ Iris

    • Thanks, Iris, and the strength you’re sending is greatly needed because there will be bumps, hills and mountains to come in the future and strength is what we need to get over them. Steph is stronger than we ever imagined and we have to match hers for her sake, but as her parents, it’s definitely tough at times. When she’s in pain, we can physically feel it, too. It’s a very strange parental sensation; that’s all I can say.
      I appreciate your love and support deeply, my friend…sending you hugs! ♥

    • Thanks Scott! It feels so good to be doing this for my second time around and I can only hope it helps Steph and others with PSC or in similar situations. Being her advocate is what matters the most. Your prayers and blessings are appreciated and always welcomed…

  7. You know I always keep Stephanie in my prayer and will continue to do so.
    Congratulations on your new book, I’m sure it will be as enjoyable and embraceable as you first, if not more so.
    Love and hugs xoxo

    • I know, Deb, and I appreciate them and you! Thank you for your kind words about my book and I hope you do love it when it comes out. You are one of my pillars in this virtual world and all you say means a lot to me.
      Much love and big hugs to you! ♥ xo

  8. My dear Lauren (#3 daughter),
    You well know of my concern when you and Matthew told me and family of Steph’s diagnosis and condition; prayers all of a sudden became more important (as if they were never important). I wanted that diagnosis to be reversed or someone to determine that it was in error. But only the Lord knows, and we all know that He works in “mysterious ways.”
    The year 2012 was not a good year; we were in mourning over the loss of mom in February and then another sad moment with Steph WHY DO THINGS LIKE THIS HAPPEN? Again, only the Lord knows and we have to keep the Faith.
    We, as family, all know of Steph’s capacities, i.e., her positive attitude, her love for life and love for her fellowman. She has an attitude that surpasses that of people I have known in my lifetime (with no insults to my other grandchildren-;love them all).
    I am pleased that you have finalized your new book, “Finding a Balance”- I am sure that many people will consider and re-consider organ donations.
    Mom is not here to express herself but I know that she joins me in prayer for Steph’s health to be on the topside with improvements all along the way; she is a great and loving granddaughter!
    I am looking forward to the new book. Where did you get that talent?
    I am closing with a favorite from scripture: John 14 (27): “Peace I leave with you, my peace I give unto you; not as the World giveth, give I unto you. Let not your heart be troubled, neither let it be afraid.”
    With love and kind thoughts,
    Dad
    .

  9. Dear Lauren, being a mother I can understand your feelings. Your daughter is very brave. My sincere prayers for her good health. Congrats for your book. Title is very nice as we all fight to keep balance in life. Wish all the best to you and your family.

    • Thanks so much, Indira, for all of your kind words and prayers. Once you’re a parent, it’s easy to understand the pain of having a child ill no matter how old they are…sending hugs and much love…

  10. Lauren, all the very best with the book. You are such a great role model for your daughter. I wish her health, happiness and lots of time to live in the present with you by her side!

    • Thanks, Jean! It feels good to donate the proceeds in this way and I hope it helps in many aspects! Thanks also for your very kind words about me being a role model. I try but sometimes in my own mind I need to try harder. And your last sentence warms my heart…hugs!

  11. My dear dear Lauren, I’m so sorry to hear about Stephanie. Autoimmunes are such weird illnesses [I own one – a ‘light’ version]. However because they start from ourselves -so to speak- [it’s as if a system is attacking itself!, hence auto-immune] a shift happens which changes our perspective. I strongly believe that that shift can heal. I am keeping her, you and all of your family in my thoughts and prayers. Needless to say, I’ll be on the look out for ‘“Finding a Balance”. Sending all my love and hugs. xx

    • Thanks for your prayers, your belief in healing and for supporting my book, Marina. And I’m sorry to hear that you also have an auto immune disease, even though a light version…they are weird; to think the body is attacking itself and especially when the person hasn’t done anything to provoke it. I hope you’re doing okay and wish you healing in the future, too…We can only move forward with strength and positive attitudes and hope for miracles….sending love and hugs to you, too, my friend and thanks again! xoxo

  12. I’m so sorry to hear about your daughter, Lauren. Sometimes there just are no good reason why these things happen. The incidence of auto immune diseases have risen dramatically in the last few decades, and many of them are little known. I hope Stephanie can get the best care possible.

    • Thanks so much, Binky, and you are right. Sometimes we never find out the reasons behind bad things that happen. Auto immune diseases just don’t make sense…the body attacking itself, but then again, stranger things have happened in life. Right now, Steph has a great team of doctors and we feel comfortable and confident in their abilities and competency. She’s covered on our ins. for two more years then depending on where she is in her life, we’ll have to make sure she stays covered! I appreciate your support!

  13. My admiration for Stephanie’s as well as you and your family’s spiritual/emotional strength cannot be put into words. But I sincerely thank you for this informative post, and am praying for all that you need now – and in the future comes to you without delay. There is strength in numbers…prayer will continue. ❤

    • Aww, thanks, Charlene, for all you said and my gratitude can’t be put into words either…I wanted to educate others on PSC and the need for organ donors without too much drama, but the drama is real so I had to add a touch. Thank you for your prayers and my continued fear is how timing works in the future when she does need a transplant. But I try not to worry about it right now as there is nothing I can do except hope and pray as you said. And yes, strength in numbers and I’m grateful for the numbers! Big hugs to you, my friend…♥

  14. My prayers will be with you and your Stephanie. My son will soon need a kidney transplant. I understand the paralyzing effect it can have on your life. I am a single parent and his father seems not to care.
    Will look into this foundation and look forward to your upcoming book. I write poetry; perhaps I could borrow a page from your book and do the same with my poetry, except I do not think it is very good.
    Hugs.

    • Thanks so much for your prayers and I’m so sorry to hear about your son, too. You can definitely understand how we’re feeling and it’s sad that his father isn’t more active and caring..I’m so sorry to hear that..please do check out Chris’ Foundation. He is very nice and his email is chris@chrisklug.com if you would like to contact him.
      I’ll let you know when my book is available and I feel so good about it having a deeper purpose than just about my poetry. I think you can do whatever you want and maybe doing something similar might help you handle your situation in a healthier, calmer manner, too. And don’t say your writing isn’t very good. I say that all the time about mine, in fact, self doubt manages to creep into most days…I need to get over it and just write.
      Anyway, I will keep you and your son in my prayers, hoping all goes smoothly for him and if you’d ever like to talk more privately, feel free to email me…sending hugs and many blessings back to you…

      • Thank you so much. Good advice for me and a caring attitude from you gives me that warm feeling inside that another person understands my deep pain. I am at peace but that does not mean there is no pain. I try not to visit that pain on others; however, finding you is a blessing. Thanks for all the info here.
        My email address: linda.bourgeois@gmail.com
        Hugs

        P.S. I am going to pull all my poetry together…thank you for giving me that kick to do so!

      • Linda, I’m so glad I could encourage and help you in any way. That warms my heart! Your line “I am at peace but that does not mean there is no pain” Wow! That describes me perfectly. “Through adversity we can either crumble or stay in one piece by finding peace” I can easily crumble if I allow it and there have been those times, believe me. When we first found out, I cried one night straight for over an hour and developed a twitch in my right cheek that lasted for a week. Sheesh! My face muscles couldn’t handle it so lesson learned. 🙂 I believe humor is always good in any situation, too. I’m so glad you found this post, knowing it has helped you. Get your poetry together and I’m looking forward to seeing a collection in the future. I’m happy to give you that kick. Sometimes that’s what it takes for us to step out of a particular box and try something new and exciting…hugs back and thanks for your email, too!

  15. Dear Lauren,
    My prayers are with you and your daughter Stephanie. I can only imagine your shock and heartache to learn your daughter has this diagnosis. At the urging of my middle son, I signed up to donate my organs years ago, as did my husband and other children.
    Best wishes on your upcoming book. I trust you will let us know when it becomes available.
    Hugs. .

    • Thanks so much, Michelle, for your prayers and understanding and I’m grateful for you, your hubby and children becoming organ donors, too…that is what this post is all about. Not only to help Steph but to help anyone in a similar situation…yes, I’ll let you know when my book is available and thank you in advance! Sending you much love…

  16. I remember feeling as you did when my daughter was diagnosed with a mental disorder NOS. I was scared for what the future was going to be like for her, for us. Fortunately, with time and a lot of research we figured out what her mental disorder is and she has learned to work through it. Your daughter sounds like a very well adjusted young lady, not surprising with a mother like you, and it’s my wish that she live a wonderful and happy life! Hugs to you my sister!

    • I’m so sorry to hear about your daughter, Loly, but I’m glad she has learned to live with it. Sometimes these things take research and time to find a balance. Thanks so much for your kind words about Steph and I, too. I do my best and so does my husband. If she is this strong then we have to follow in her footsteps but as parents, it’s a little harder. Thanks also for your hugs. Much love to you and many hugs back for a happy future, too! (and happy weekend) 🙂

  17. Ahhhh…I sigh with deep emotions. Wow….you are all so brave. Lauren, as parents our children become our lifelines and legacy. When something happens to them that we cannot “fix” we are left broken, helpless, and in destitution. You sharing this is wonderful. I learned something new today. Thank you. I look forward to your new book. You are a phenomenal writer, poet, mother and human BEing. Mucho love to you and yours.

    • Your words describe how my husband and I have felt, perfectly, Millie…broken, helpless and in destitution. But we’re learning to accept and live with it and hope and pray all works out as we want for Steph in the future. I’m happy to educate you and others not only about PSC since it’s so rare but also the importance of organ donors. I’ll let you know when my book is available and thanks in advance, too! Oh and your kind complements overwhelm me with appreciation, thank you once again and much love to you, my friend…xoxo

  18. Lauren, this deeply moving and saddening account of your beautiful daughter’s struggle is painful to comprehend from a parental standpoint, not ever wanting to see their child sick or in pain. I will keep the most positive thoughts for her full recovery Lauren. Remain strong and positive for her as you surely will.

    Hugs to you and yours and thank you for sharing such a difficult aspect of your daughter’s life in this time. If she emulates her mother’s strength and determination, and her love of life, she will prevail.

    • It’s so hard beyond words to see a child sick, Don. Whenever she is in pain, we both physically feel it, too. It is a sensation that words don’t do justice. Thank you for your positive thoughts in advance and we all try to be as strong as possible. Right now she’s fine and no one would even think anything is wrong because it’s all internal. So we are grateful for the good days and have learned to accept and live with the symptoms when they flare up and hope the future brings miracles. Thanks for your hugs and all of your kind words and support. I (we) truly appreciate them…hugs back to you and have a wonderful weekend!

  19. Sweet, wonderful Lauren! I have known a bit about your daughter’s condition through Facebook and now this is a beautiful way for you to use your writing to give to the cause that is so close to your family’s hearts. I support your book 100% – make that 110% – and admire you! I am excited to read your new poems too. Sorry for being late to the post but I am here to give you a hug tonight xx You are a strong mom and your daughter is so blessed to have you ❤

    • Aww, thanks so much, Christy, for all your kindness you give through your words. No worries about being late; late is my middle name now! 🙂
      Thanks for the hug and support, always, and I really do feel good about what I’m doing with the book. Sometimes it’s not all about us, but it’s about something deeper…Sending much love to you, my friend, and many hugs for a great Monday and week ahead! ♥ xoxo

  20. I wish you every success with your book and worthwhile cause which you chose to support Lauren.
    May your daughter continue to live a long and fruitful life, you have painted a beautiful picture of your daughter.
    I wish you all much love and happiness, your love and courage in the face of adversity, is credit to you and your family.
    Kind regards
    Ian

    • Thanks so much, Ian! It feels good to create a deeper purpose with my second book and I hope it helps even in small ways…Steph is beautiful, inside and out and I appreciate your well wishes for her. We will all continue to move forward and fight the fight. 🙂 Have a wonderful day, my friend…

  21. How do I begin and what do I tell u Lauren? I just finished reading your ‘one kiss’ and was wanting to comment on it but the comment field was not opening….giving up, I open your recent posts and the Stephanie story comes striking like unexpected shelling… The unalloyed love shining through all your posts deserves a divine reward, and I am sure it is in its way in the form of a miraculous restoration of Stephanie… May I congratulate you on your new publication. If amazon at yours can make it available at Amazon India, yours truly and many of your friends here will certainly buy it. Meanwhile Stephanie and u have my affectionate regards, prayers and best wishes… Raj.

    • Hi Raja, I had deleted the first time I posted “One Kiss” because of more editing. It’s up now to stay! 🙂 Sorry about the confusion!
      All your kind words about my posts and Steph, your prayers and well wishes are greatly appreciated, please know that. I feel the more we have the better for her in the long run…we will continue to echo her amazing strength and live life…thanks for your book support, too. It’ll be on Amazon, but I’m not sure about international sales. I’ll look into that. It really feels good to have a profound purpose with this book and I’m hoping it will help Steph and anyone in a similar situation. Anyway, thanks again for everything. Much love and many blessings to you…Lauren

  22. Lauren from the first moment I opened your blog I could see what you are all about. It is amazing how time after time we talk to people around us and we never find whats going deep in their own life. I read with sadness about Stephanie health and I know that there is one thing and it is to believe and never give up. I send you all warm hugs and will do anything to help if I could so remember I am few words around the corner. I wish you good luck with your book and better health for your precious daughter, Doron ❤

    • Aww, thank you so much, Doron, for your heartwarming words and hugs…we won’t give up; there are weak moments, believe me, but her strength keeps us going, as parents…and of course, her brother’s strength, as well. I appreciate your offer to help in any way and who knows, maybe it’ll be simply to listen if I’m having a down moment. Thanks again for everything, my friend, and I wish you a great week ahead…xx

  23. Lauren, I send you love and strength and I hold you and Stephanie in my thoughts and prayers.
    Success with your book. Keep in touch and I will do whatever i can to help out with the sales and promo. I am just a speck on the wall over here. But every little bit helps.
    My heart is next to yours my friend. With love,, Cindy

    • Cindy, you have me speechless…I can’t express in this little comment how much your words mean. I will say “thank you” though from my family and I, from the bottom of our hearts…and I will let you know if I need any help. I’m hoping that more people will decide to be organ donors so that they can offer second chances in the future. I want this endeavor to help Steph, of course, but to also make a difference in the bigger picture. Thanks again and Big hugs, much love and many blessings to you, my friend…xo ♥

  24. Pingback: Cholangitis | Find Me A Cure

  25. Pingback: “Finding a Balance” is available! | LScott Poetry

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