What’s It All About?
So this whole blogging thing I'm doing here... What's it all about? I'm so glad you asked! For starters, I delight in telling a tale or two from time to time. Additionally, my writing provides an efficient way for me to keep my incredible support system of family and friends informed regarding the latest adventures in my continuous medical journey. And since I do have the tendency to be quite silly, my zany narratives present me with the perfect opportunity to allow my inner goof to run free. Oh, and as a bonus I think that my darling little Double Doodle Alice Eloise has an enchanting way of spreading sunshiny cheer! Canvas 2-p001 Do I imagine my life to be so intriguing that the entire blogosphere needs to know about it? Nah. Don't worry, I have no intention of making this blog the "Sarah Kate Variety Show"... Although the fantastical kookiness of such a prospect is rather intriguing. But what if my recollections could help someone else? As one could surmise based on the title of my blog, I have always been fond of the adage "every cloud has a silver lining". I would like to think that my writing could serve as a silver lining to the cloud of my illness, somehow bringing hope to others who read it. While the mysteries surrounding my health problems have yet to be fully unraveled, more clues are gradually being discovered. But unfortunately I was sick for too many years before landing anywhere near a cohesive explanation that could somehow correlate the seemingly random facets of my illness. Because of the confusion and frustration of my own search, it breaks my heart when I see others suffering from their own bewildering illness, grasping for even the wisp of an answer. How I wish I could help them in some way... Through friendships I have made in hospitals, online support groups, and months spent at over a dozen Ronald McDonald Houses, I have become all too aware that there is a dishearteningly vast demographic of undiagnosed patients desperately in need of relief. These relationships have kindled within me a sense of responsibility to speak up... What if spreading awareness regarding Hemophagocytic Lymphohistiocytisis (HLH), mitochondrial disease, Reflex Sympathetic Dystrophy (RSD), digestive tract paralysis, and other rare diseases could help lead someone else to a diagnosis, treatment, and potentially even a cure? In hopes of providing insight to those who need it, I plan to chronicle some of my past medical experiences and to periodically share the stories of courageous warriors in the midst of their own fierce battles. Really there are endless issues that I could discuss regarding chronic and rare illnesses, each of which can be experienced from a myriad of vantage points. For instance, what can the families and friends of those who are struggling do to show their support? Even when trying to convey encouragement, it can be difficult to find the appropriate words to say to someone affected by perplexing conditions, while silence often leaves those who are suffering with a crestfallen impression of judgement and isolation. When even doctors cannot explain such befuddling symptoms, how can anyone else be expected to understand? Now I know what you're thinking... "Why would I want to read a blog about sick people?" Ugh, that does sound pretty gloomy, huh? Certainly it does not hold the same type of appeal as, say, a cooking or fashion blog. But there is a message that needs to be shared, and I intend to give it a voice. In all honesty I must disclose that due to this unpredictable mind I have, God only knows all this blog may grow to entail. But despite the dreary details of chronic illness, I do have a lot of fun each day, and that will be sure to shine through in my writing, too. Ultimately it is my wish that I may provide a haven of comfort, inspiration, awareness, and smiles... And above all, I want to share the love of Christ. Only the Lord can supply the faith, hope, and strength that is necessary to overcome life's most intimidating challenges. A Bible verse that has brought me great peace is John 16:33 - "In this world you will have trouble. But take heart! I have overcome the world." How do you like that silver lining? Today I want to leave you with the beautiful story of Zach Sobiech, a remarkable young man who truly embodied this silver linings outlook that I respect so much. I suspect that some of you may have heard of Zach; a song that he composed, entitled "Clouds", recently made its way into the public eye... Or the public ear, so to speak. "Clouds" is certainly a catchy tune, but it is the inspiration behind the lyrics that has imparted the song with such a special essence. A few weeks ago Zach passed away at the age of 18 following his 4-year struggle with osteosarcoma, a form of bone cancer. The manner in which he and his loved ones made the most of their fleeting time together is extraordinary, an example that we all should emulate in our own interactions with one another. I highly encourage you to watch this documentary about Zach whenever you have the chance. It's 20 minutes in length, but once you begin watching, you won't be able to turn away. It's simultaneously poignant and sad, uplifting and joyful. I promise you will catch Zach's contagious smile over the airwaves! Quite simply Zach did not let something so overwhelmingly frightening as terminal cancer bring him down for long. Instead he managed to use his abbreviated time on Earth to inspire many people with his kind and jovial heart. Whether I have 80 days or 80 years of life ahead of me, I hope that I, too, can leave a legacy of love and joy behind me. Wouldn't you like to do the same? * If you want to read more about Zach's story, you can view his CaringBridge page: www.caringbridge.org/visit/zacharysobiech
Sarah Kathryn Frey

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11 Responses to What’s It All About?

  1. Janet Pickering says:

    Sarah, sometimes you just melt my heart. I love you.

  2. Amy says:

    Beautiful as always. 🙂 “Why would I want to read a blog about sick people?” hahaha! a lot more people would than you would think when it’s a pretty 22-year-old with a sunny personality. 😉

  3. Yvonne Rieger says:

    I love reading your blog Sweet Sarah and actually look forward to it. You are such and inspiration and have such uplifting words. I often sit down and re-read them when I need a smile or just to clear my mind 🙂 I spent the day with my nephew and (much like you) he has an such a positive attitude as he faces some health challenges. I couldn’t be more proud of him. Hugs to you and all your family! We continue to pray for you and all of your medical team as they look for answers and treatment.


    • I am so very blessed to have you as my friend, Yvonne! I have been following along with Glenn’s progress. I definitely did a happy dance following his last bone marrow biopsy! I know he has a quite a journey ahead of him, but he is being so brave. I am praying that everything continues to go in the right direction!

      I love you!

  4. Michael Walther says:

    Thanks Sarah for this entry. You’re telling people the same thing I’m trying to tell people. The Lord be with you.

    • Thank you, Pastor Walther! Sometimes it can be challenging to keep this perspective, but what it all comes down to is that God has the perfect plan for each of His children. My suffering is not in vain, somehow it will be used for good! And after all, everything on earth is temporary… We have a beautiful eternity in heaven to look forward to!

  5. Judy McKillip says:

    Sarah- You and my granddaughter Krystal inspire me to work though any trouble that may come my way.
    You are always in my thoughts and prayers as you live with such great pain. You are both the bravest people I know. I have been in contact with your Mom for many since Krystal got sick. Her sharing information and her kindness helped me through some very difficult times . Love Judy

    • Judy, I greatly appreciate your prayers and support over the years! My mom has told me much about you and Krystal… I admire Krystal’s incredible perseverance through her pain. From what I have heard, she fights her hardest to live life as fully as possible. And Krystal and I are both so very blessed to have such loving family members to keep us strong!

      I’m sending love and hugs to both of you!