God’s Silver Linings

20130424-215706.jpgAs much as it would please me to tell you that I was a delightful 12-year-old girl, I cannot truthfully say it. Now don't misunderstand, I was no delinquent. I simply had a bit of that oh-so-charming adolescent attitude. At my house the punishment for such an attitude was confinement to home with no television, internet, or friends. So in 2003, a series of groundings left me doomed to spend September in its entirety serving my time. Evidently I wasn't catching on any too quickly.

However, at the outset of my detention, my cousin Anne called me asking if I could spend the weekend with her at my aunt and uncle's house. When I regretfully told her of my predestined solitude, Anne would have none of that. She was always a quick-thinker in desperate situations such as this, and she somehow convinced my mom to loosen the terms of my punishment to allow for cousinly bonding, effectively rescuing me from the depths of misery. And so I spent every weekend that month with my amazing cousin, Anne. Who knew being grounded could be such a party?

So many of my best childhood memories were spent with my cousins and my big sister, Krista. Anne and her sisters, Laura and Sarah, were several years older than Krista and me, which, in my eyes, automatically qualified them as the most incredible people on the planet. It was almost as if I had four big sisters instead of only one. Every holiday, birthday, and special occasion was celebrated together, and each Christmas, not long after sunrise, I came to expect a phone call from Anne, asking, "When are you guys going to get here?!" Laura, Sarah, and Krista were very much of the "color-inside-the-lines" demographic, striving to succeed while abiding by the rules. And we have always loved them that way! Thank goodness some of us behaved as proper young ladies should. Anne and I, on the other hand, had more than our fair share of spunkiness, and we seldom paused to consider that our playful antics might just land us in a bit of mischief. We never intentionally crossed the line... But we toed that line just often enough to keep our parents on edge! I was undeniably flirtatious, just as Anne had always been. One evening, during one of the aforementioned groundings, I was gushing to Anne about my dreamy junior-high boyfriend. Those dazzling green eyes, that beguiling smile... That striking five foot three stature; an awkward six inch height difference, my plight as a tall, gangly girl, was easy enough to overlook in the name of puppy love. Anne laughed, saying “Sarah, you are going to grow up to be just like me... And your parents are gonna hate it!” A smile spread across my face; what Anne didn't realize was that being just like her was precisely what I was aiming for. The similarities between Anne and me did continue to grow, but not as we ever could have anticipated. Significant challenges were ahead for both of us. We soon received the devastating news that Anne had angiosarcoma, an extremely uncommon terminal form of cancer. Our close-knit family grew even closer, giving Anne as much support as we possibly could. Swiftly I dropped my preteen angst, but I continued to spend all of my free time with Anne. The year following her diagnosis, my heart was broken when Anne passed away on Christmas Eve. I couldn't help but question why God had taken one of my best friends away. She was only 22, so full of life! God, are you sure it was her time to leave? Soon I would draw inspiration for much-needed strength from Anne's ability to maintain her kind and fun-loving disposition, even in the face of a ruthless disease. In hindsight, I now recognize that I was at the forefront of a medical crisis of my own, fighting a mysterious staph infection, unexplained fevers, curious blood counts, and subsequent lingering pain, all at the very same time that Anne was enduring her battle. And then two weeks after she passed away, I sprained my ankle, an event that catapulted a series of drastic changes for me. I developed Reflex Sympathetic Dystrophy (RSD), a neurological condition causing constant, unimaginably intense pain. And following the proactive therapy of weeklong epidurals, nerve blocks, and more medications than I would care to list, I developed crippling abdominal pain, making it nearly impossible to eat. Cereal and baby food became my sole form of sustenance. From that point on, my health continued on a downward spiral. Any sense of normalcy quickly diminished. I was forced to relinquish my great loves of horseback riding and dancing, I could no longer keep up with swim team, slumber parties became nothing more than a fond memory, and my days of absence at school soon outnumbered my days of attendance. And oh, what a bitter sting I felt when I learned how easily one of my closest friends could forget me, barely even speaking to me on the rare occasions I could make it to class. Sound check: God can you hear me? You see, I kind of have goals for my life. Can't I just be a normal kid, please? And I really want to be a missionary in Africa someday! You know, that "make disciples of all nations" idea? So you can heal me now. Sound like a good plan? Okay, I think so too. Glad we had this talk! Oh yeah, and thanks for listening! Now, I knew that I couldn't strike a deal with God. Even the most honorable of intentions cannot "earn" healing. That just isn't how it works. But I was feeling very desperate and lost... In so many ways my childhood came to a crashing halt when I was just 12 years old. And as I was hurled into a labyrinth of confusion, there was still this adolescent naïveté within me that made it difficult to grasp the harsh realities of chronic illness. For years now my family and I have attempted to navigate our way through this baffling maze surrounding my illness, picking up puzzle pieces along the way. And naturally, from time to time we have taken a few wrong turns. I have felt so frighteningly small and helpless while at the hands of a cruel physician. It is an almost unfathomable occurrence that far too many patients face, but the sad truth is that some doctors are more concerned with saving face than saving lives... They have too much pride to admit that they don't understand what is wrong with their complicated patient, and frankly, some of them just don't care.

But I have seen the very best of doctors as well. I have an exceptional team of specialists, kind and compassionate people who have helped me sort through the often bewildering myriad of facets involved in my illness. It has been an arduous and continual search, but nearly 10 years into this quest, answers are still gradually being discovered. It is believed that I have mitochondrial disease (also called mito), a genetic disorder which can affect nearly every system in the body. It has led to Gastroparesis, which is essentially digestive tract paralysis, leaving me unable to eat, reliant on IV nutrition. Mitochondrial disease is also the culprit behind my relentless pain syndrome, RSD. Mito can also affect the bone marrow; in my case this has resulted in a very rare cancer-like condition, Hemophagocytic Lymphohistiocytosis (HLH), which causes my immune system to overreact, triggering macrophages to abnormally consume my blood cells. This organ-damaging disorder necessitates chemotherapy or another form of immunosuppressive treatment. For many patients, a potential cure is found in a bone marrow transplant, an option I hope I am never forced to pursue. From almost every vantage point, my life seems to be spinning out of control.

But appearances can be deceiving. Today is my 22nd birthday, and when I reflect on this long and tumultuous journey, I barely recognize the questioning and doubtful, rowdy and mischievous 12-year-old girl at the beginning of this road. I have come to realize that God's way is absolutely perfect, a truth that was difficult to comprehend in the confusion I felt back then. The Lord is working within me, impressing upon me the fact that I can fully trust in Him to lead me each step in this crazy, unpredictable life. I admit that there are days when I continually have to remind myself that the temporary pain of the moment will most certainly pass... And God has faithfully rescued me from each of these darkest days, serving as my shield and comforter when I have been so afraid and overwhelmed. So really, what do I have to fear with a defense like that? Through my cousin Anne, God taught me how to handle adversity gracefully and with a smile. This girl, my partner in mischief, every bit as spunky as I ever was, had the most loving heart of anyone I have ever known. During the short time that we were blessed to share together, we created an impressive repertoire of silly anecdotes. But as thankful as I am for those cherished memories, what I remember most about Anne is the depth of her love. Really, how many 21-year-old girls do you know who would spend their weekends with their teeny-bopper cousin? But Anne didn't even consider such superficial matters... She loved unconditionally and wholeheartedly; it was this love that came to define her. I think God might have given both Anne and me that extra dose of moxie knowing that we would need it to fight a few dragons during our lives. I can scarcely believe that I am now the same age that Anne was when she went to heaven. In so many ways I still feel like a little girl, making her outstanding courage all the more inspiring for me. What a comfort it is to know that Anne is with our Savior now, taken care of for eternity; and how exciting it will be when I see her again someday. But apparently there is still more that God desires to accomplish in me. I hold onto the fact that He is able to heal me, and perhaps someday He will. But for now, He is refining me through my remarkably unique experiences. I may not be a missionary in far-off lands as I always hoped to be; but I can still be the Lord's disciple in a special way, according to His perfect plan, as He leads me to opportunities to tell my story, sharing His boundless love with others. Although I am physically unhealed, God has mercifully blessed me with peace, opening my eyes to see the silver linings that He lovingly places for each of us on our cloudy days. Through these beautiful gifts He has given me direction, shaping me into the person that He wants me to be. I can guarantee that I never would have chosen this life for myself. If left to my own designs, I'm sure I would have kissed a few too many boys, and my lively, rambunctious shenanigans would have surely gotten me into a pickle now and then. But that was not to be. God's plans so greatly outshine any crazy escapades I could have dreamed up. Among the suffering, the Lord's blessings abound. I am so very thankful for His provisions of incredible family and friends... Including Alice Eloise, the sweetest little Double Doodle who has added so much sunshine to my life! I am a very blessed girl, to be sure. But above all else, because of the moments of weakness that I have felt, when the Lord's perfect strength carried me through such fearful experiences, my faith in Him has blossomed, allowing me to feel God's presence within my heart all the more acutely, a most spectacular blessing indeed. I am often asked how I remain cheerful despite my pain. The fact is, God empowers my optimism. And He will do the same for anyone who looks to Him for joy and peace. Just put your trust in Him and take a look around. You will see His silver linings... They are always there.
Sarah Kathryn Frey

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42 Responses to God’s Silver Linings

  1. Amelia Moore says:

    Tears! No words, as you seem as always to speak directly from my own heart. Thank you for sharing more of your story, and brave beautiful Anne’s.

    All my love

    • Sarah Kathryn Frey says:

      Thank you, Amelia! You are so kind. I am so thankful that we met and have become such great friends! I become more convinced that we were separated at birth with each passing day.

      This morning when I woke up my mom told me I had a gift from my sister. I opened it and it was a set of Lucille Ball films! I thought, “I will have to tell Amelia about this!” Then my mom told me it was from my sister in Pennsylvania… You are so sweet and thoughtful. Thank you so much for the birthday gift! It will bring me much entertainment. I love you!

  2. Susie Meyer says:

    Happy Birthday sweet pea! Good blog and a good day to introduce it! I will so look forward to your postings as usual. Hope you have a blessed day!

    • Sarah Kathryn Frey says:

      Thank you very much, Susie! I always enjoy your notes in my guest book. It is so kind of you to follow along with my journey. Your support means a lot to me. I hope you are well!

  3. paul hemenway says:

    Sarah,

    Great to see this website! You are such an inspiration in the faith. May God continue to bless and direct you. You are always in our prayers.

    Pastor Hemenway

    • Sarah Kathryn Frey says:

      Pastor Hemenway, how lovely it is hearing from you! We miss you so much at Good Shepherd, but I listen to all of your sermons online. When you mention Springfield every once in a while, if I pretend that you say “Collinsville”, I can almost imagine that nothing has changed!

      Thanks for reading! I hope you and your family are well and enjoying your new home.

  4. Karen says:

    Happy 22nd Birthday. You are such an inspiration and so very blessed. What proud parents you must have ! I love reading your stories and share them with my mom. We keep you in our prayers always!

    • Sarah Kathryn Frey says:

      Karen, thank you so very much the birthday wishes, and for reading and sharing my story! And most of all, thank you for your prayers. Hearing all of this helps keep me strong!

  5. Kim Giles says:

    What a wonderful introduction to your blog. You are a true inspiration! We wish you the best birthday today with many more to come. Enjoy your special day!

    We love you, Sarah!

    Kim, Steve, Madi, Cooper and Evan Giles

    • Sarah Kathryn Frey says:

      Thank you so much, Giles family! I am enjoying a lovely birthday, and hearing from you makes it even better! Sending hugs to you in Kansas City! I love you all!

  6. Mary Keating says:

    Sarah, first of all: HAPPY, HAPPY BIRTHDAY! You’ve done a wonderful job on your blog. Your words glorify God, and I’m sure, will be used by Him to bless many.

    I hope you still remember both Rachel and myself (Mary). I met you and your wonderful mother at the Ronald McDonald House by Loyola when I was volunteering there. I believe when Rachel finally got to meet you, it was also near your b’day. Your mother had a cake for you there and Rachel had gotten a bunch of little items for you to celebrate your day. Rachel, like you, still suffers medical mysteries. And like you, many of her dreams/plans for life have been affected. But the GREAT faithfulness in the daily life of each of you, gives God such glory, and others do see this. You two struggle with accomplishing a pared-down way of life — while most of us take these things for granted. You both have fought for years and continue to fight. You two truly are Godly examples to the rest of us. I thank the Lord for filling you with His grace and with the Holy Spirit and all His gifts. Yes, as the Bible tells us: gold is refined by fire, the impurities are burned out. YOU and Rachel are fine gold!! The Lord has blessed you and Rachel with beauty on the outside, but what shines more in you two is your faithful character and love. I thank the Lord that He allowed us to meet. I still hope one day we may be able to get together again.

    Blessings on you, your parents, your sister and her husband….and your beautiful doggy!
    Mary Keating

    • Sarah Kathryn Frey says:

      Mary, you are so incredibly kind! Of course I remember you! I am so blessed to have met you and Rachel! You are two of the most beautiful people I know… God’s love shines through both of you. I fondly remember our days at the RMH! I hope we can meet again someday… I will bring Alice Eloise! Give Rachel a gentle hug from me!

  7. David Moran says:

    Sarah,

    Happy Birthday from the Moran’s. No, not Dr. Moran, but David and Sandy. You don’t know us but I am a friend of your Dad’s from work. I feel like I know you from all the years we have talked about you. He and I have traded stories about our daughters, I have three, and their struggles with health issues over the years. My daughter Erika was diagnosed with Type I Diabetes about the same time your health issues started. Anyway, we are praying for you, your family and your doctors. Hope you have a great day today.

    David and Sandy Moran

    • Sarah Kathryn Frey says:

      Thank you for the happy birthday wishes, Moran family! It is so kind of you to follow my story. And I am glad you took the time to comment, too! It is such an encouragement, and it brightens my day, hearing from friends. Thank you so very much for your prayers… I will be praying that your daughters’ find comfort and healing when they are in need, too!

  8. Janet Pickering says:

    What beauty and clarity you bring to such complex issues. You and Anne were definitely partners in so many things. Most evident are the love and caring in your heart and your ability to look at your situation without bitterness. You are a gift to all of us, and I treasure the times we have shared and look forward to many more. The strength you show so often makes me look to your example. Happy Birthday and God’s blessings to you, Sarah.

    • Sarah Kathryn Frey says:

      Thank you Aunt Janet! Anne was an excellent example and inspiration for me. You put it perfectly… She did not allow her crummy circumstances make her bitter. She was all about getting the very most out of life! And she showed so much love to such a lot of people in doing so.

      Thank you for spending my birthday with me, Aunt Janet! I love you! (And thanks for that candy bar all those years ago… I remember it fondly!)

  9. Amy says:

    What a beautiful blog! I am so impressed. I think that you can reach so many more people through the internet than if you had become a missionary in Africa. Maybe this is the real reason God made you so gorgeous. 😉 People will click to see the pretty girl and immediately be drawn into her beautiful story! Love you, and hope you have a woooonderful birthday. 🙂

    P.S. your present is impending. My parents will bring it to church May 11. 🙂

    • Sarah Kathryn Frey says:

      Thank you, Amy! I count myself as very blessed to have you as my friend. Not many people like Build-a-Bears and Lip Smackers as much as the two of us. It was fate! You’ve been such a loyal friend! I love you!

  10. Ken says:

    Happy birthday Sarah,
    How fortunate that I checked my email tonight and found your link to your new blog. You have no idea how impressed I am with what you accomplish in the face of such adversity.
    I am sure your light is shining out to the world as an incredible example of faith and love – a powerful example to follow that few have ever achieved. You are such a blessing to all of us.
    Ken

    • Sarah Kathryn Frey says:

      Ken, hearing from you brings me a smile! I am so thankful to have you as my friend. Your kind words touch my heart. God has blessed me in so many ways… I hope that I can bring Him honor through my writing, sharing His love with others. I hope to see you sometime this Spring! My dad and I have been doing some gardening this year. I would love to show it to you and Christa!

  11. Dad says:

    What a beautiful blog, Sarah! Your creativity and your gift with writing continue to amaze me. Thank you for sharing your story and your faith with those who follow you.

    I’m so happy that you had a nice day to enjoy on your birthday. I’ll be home tomorrow and look forward to our time together this weekend. Hopefully the weather will cooperate and we’ll get to enjoy some time outside together.

    Happy Birthday, Sweetheart! I love you!

    Dad

    • Sarah Kathryn Frey says:

      Thank you, Daddy! It’s easy to have a positive outlook when I have such a great family! We will have to plant those flowers this weekend. Our garden is so beautiful! It would have taken me years to dig all of those holes. Thank you for your help! You know how much flowers make me smile!

  12. Jennifer Finley says:

    Sarah,

    I hope you had a wonderful birthday. We are so very blessed to have you as our neighbor. I hope to see you out and about this Spring.

    Hugs,
    Jennifer

    • Sarah Kathryn Frey says:

      Thank you Jennifer! My birthday was absolutely lovely. The weather was beautiful, my mom, aunt, and puppy were here, and I had nothing to do but take it easy! Thank you for taking the time to read my story. Alice Eloise and I will be out enjoying Springtime. We always love seeing you!

  13. Bonnie Blasingame says:

    Hi Sarah! Thank you for sharing your faith journey. You are an AMAZING young woman and an inspiration to us all! Please know that you and your family are in my prayers EVERY morning.

    • Sarah Kathryn Frey says:

      Bonnie, you are such a sweet person, I wish I was in your preschool class! I greatly appreciate your following along with my journey. I know God makes good of all situations… It’s only right for me to share my faith in Him! Thank you so very much for your prayers.

  14. JOHN JOHNSON says:

    SARAH,
    SPECIAL LITTLE STORY FOR YOU. AFTER MOVING BACK TO MY NORTHERN WISCONSIN HOMETOWN 3
    YEARS AGO, MY SISTER INTRODUCED ME TO HER FRIENDS, A FAMILY OF 5, WHO HAVE SINCE BECOME GOOD FRIENDS OF MINE.

    THE O’S, AS I FONDLY CALL THEM, HAVE MORE THAN THEIR SHARE OF CHALLENGES. MOM HAS FIBROMYALGIA AND CELIAC DISEASE, THE OLDEST SON, AT 32, IS A STURDY GUY, BUT HAS TYPE 1 DIABETES AND THE MENTAL CAPACITY OF A 6 YEAR OLD. THE 26 YEAR OLD SON AND 24 YEAR OLD DAUGHTER ARE DELIGHTFUL,FUN TO BE AROUND, ETC. BUT ARE SLIGHTLY SHORT OF FULL MENTAL CAPACITY. THEY CAN DO SOME ODD JOBS, BUT ARE LIMITED IN OPPORTUNITIES. DAD HAS HAD A TOUGH TIME FINDING FULL TIME WORK. WHAT HAS WORKED OUT WELL IS THAT I HIRE MOM AND DAUGHTER TO DO HOUSECLEANING FOR ME (OLD GUYS TEND TO BECOME PACKRATS) AND HIRE DAD AND ONE SON DO SOME CHORES FOR ME.
    IT HAS BEEN ON A REGULAR BASIS AND IS HELPFUL TO ALL OF US.

    WHEN MOM AND DAUGHTER CAME OVER SATURDAY, I TOLD THEM ABOUT MY FRIEND SARAH, AND LET THEM SEE YOUR WEB SITE. THEY WERE TRULY TOUCHED. AFTER WE FINISHED CHORES, WE WENT OUT FOR LUNCH AND CONTINUED OUR CONVERSATION ABOUT YOU AND YOUR WONDEFUL, INSPIRING ATTITUDE AND OUTLOOK. WHAT MOM THEN SAID IS THE MAIN REASON FOR SENDING THIS NOTE.

    ” SURELY, SHE MUST HAVE GOD IN HER POCKET.”

    I THOUGHT THAT WAS MADE FOR YOU.

    JOHN JOHNSON

    • Sarah Kathryn Frey says:

      John, thank you for sharing this very sweet story with me! How wonderful it is that you and the O’s have been able to help each other, forming a truly endearing friendship. The mother’s comment brought me a smile… God has granted me many beautiful blessings in my life! Send the O family my love! And I am sending my love to you, too, my dear friend!

  15. Melanie says:

    Awesome! Such an encouraging woman of God you are 🙂 Loved reading your post…fantastic…keep it up!
    Love Melanie 🙂

    • Sarah Kathryn Frey says:

      Melanie, thank you so much for taking the time to read my story, and for your kind words. I have enjoyed reading some of your recent posts… I could relate to “Feeling Different…” I think your uniqueness allows you to share God’s love all the more! Glad to meet you.

  16. Sarah: Happy Birthday! You are a very brave young lady. You are now in my prayers and on my prayer list. God will bring you through this to the other side. It is good to meet you. Your courage and faith will shine forth for others to see. God Bless you, Sarah.

    • Sarah Kathryn Frey says:

      Thank you so very much! Your prayers are greatly appreciated. I have learned to be brave, thanks to my faith and hope in God. If I did not know Him, I would be a worried mess! Thanks for taking the time to read my story! It’s great to meet you too, friend.

  17. Sue Giles says:

    Hi Sarah,

    I was quick to read your new blog and I am so impressed. I look forward to future posts. They are always wonderfully uplifting and I marvel at your talents. I think I am all signed up to receive notice of your posts.
    Love to you, Alice Eloise (sounds like she is doing wonderfully) and your parents.
    Aunt Sue

    • Sarah Kathryn Frey says:

      Thank you so much, Aunt Sue! I really enjoy writing… It is a perfect creative outlet for me, and gives me a way to share my story. I hope it can help others! I greatly appreciate the support and love that you and the rest of my Giles family always provide.

      I love you! (And Alice Eloise sends a kiss, too!)

  18. Lauren says:

    You’re beautiful, inside and out. keep sharing. The Lord is doing great things in you. so much love sister <3

    • Sarah Kathryn Frey says:

      Lauren, I really appreciate your taking the time to read my story! I have enjoyed reading some of your writing as well. I am so thankful for my faith in God, and am thankful that you have faith in Him, too. I can’t imagine trying to take this journey without knowing Him. He carries us through all things, good and bad. What a comfort is knowing that He always has the best plan for us! So glad to have you as a new friend!

  19. Robert says:

    Dear K

    I am sure you can and maybe soon be healed. I was pleased to find out you are a Believer like me.

    God knows all about you, and i want to be your friend.

    Robert.

    • Sarah Kathryn Frey says:

      Robert, I, too, am confident that God can and does perform miracles in our lives! I know that I am exactly where He wants me to be at this moment. But someday perhaps, in His perfect timing, He could heal me! It is hard to be patient, but I trust that He knows what is best! Thank you for your support, and for being a friend.

  20. Rich Asperheim says:

    Good Morning Sarah,

    I just wanted to let you know that I have been praying for you, and hope that God continues to give you peace through your journey to find answers and relief from your pain. I am a friend of your Dad, and just want you to know that I am praying for you and your family. I live in Newcastle, OK and the tornado that just went through is devastating. My thoughts these days are about what is truly important. God, Family and Friends and oh yeah puppy dogs :)! The picture of Eloise as a puppy is adorable.

    I will continue to follow your blog and keep up-to-date.

    May God continue to speak to your heart and give you encouragement.

    Sincerely,

    Rich Asperheim

    • Mr. Asperheim, thank you for following along with my journey! I very much appreciate your prayers.

      And I am keeping your family and community in my prayers as well. I can’t even imagine the widespread devastation caused by the tornado. You are so right, family and friends, including puppy dogs, are truly blessings to be cherished!

  21. Ken Kelley says:

    Dear Sarah,
    It has been a long time since you, your mother, and I talked at Our health club in Glen Carbon. I miss seeing you at the pool there.
    You have been on our (St. Andrew’s in Edwardsville) prayer list ever since then. Those who are praying for you every week recently asked me how you are. I was VERY ashamed to say I didn’t know. So here I am, on bended knee, asking for your forgiveness and hoping I can give the prayer group some good news.
    I do not blog or use facebook. I’m just an OLD (75) ludite who can still use email.
    I recently learned that I have a grand-niece who was also bitten by a tick during the onset of puberty and her story sounds very much like yours. Maybe the two of you can get in contact with one another later on?
    Her family are Jehova’s Witnesses.
    Prayerfully,
    Ken