Thursday, May 01, 2014


I've been thinking a lot lately about blessings.  I've been trying to count mine.  The big ones.  The small ones.  It turns out, I have a plethora.  I have this huge abundance of evidence in almost every moment of my life that reminds me that I have a Heavenly Father who loves me.  Life is far from perfect; it's filled with challenges (and sometimes a little bit of heartache tossed in there to keep things interesting).  Sometimes, I have to force myself to take a deep breath and remember that in the midst of this chaotic reality of mortality, I have so much to be grateful for.

Last year, I chose a verse of scripture to act as my motto for the year.  (That's documented here.) I decided to do the same thing this year.  In January, this scripture (an excerpt from Alma 34:38, from The Book of Mormon, went up on my bathroom mirror for me to feast my eyes on every day until the end of December:

". . . live in thanksgiving daily, for the many mercies and blessings which he doth bestow upon you."

I kind of snagged it from a talk about the importance of gratitude at a church women's event last fall. The speaker did an amazing job.  Her talk focused on using gratitude as a way to prepare ourselves for the storms of life.  As I listened to her message, I instantly thought, "I'm going to make that my motto in 2014."  I knew it was going to be important to try to have a heart full of gratitude this year.

I knew, because in October, I got a phone call from a genetics lab.  I was in the Harris Teeter parking lot. I'd gone by myself to pick up a pizza for dinner, and I was pushing my shopping cart out to the car.  My phone started to ring, and I didn't recognize the number.  I almost didn't answer it.  But I did.  And this lady with a super happy, perky voice told me that they had my test results.

A few weeks earlier, I had spit in a tube and mailed my saliva to Emory University, so they could analyze my DNA and find out if I have the same rare disease that my mom, grandmother, and uncle have.

The lady sounded so happy on the phone.  And then she told me that, "You do have the mutation."  And I started to cry.  Right there in the Harris Teeter parking lot, with a $7.99 pizza special sitting in my shopping cart.

And I was so angry at the lady on the phone, with her stupid, perky voice that was so full of false hope and how she had totally tricked me.

And then the lady felt awkward, because she could tell that I was sobbing.

So she fed me some line about how FABRY disease affects all women differently, and that I may have a completely different experience with the disease than my mom does.

But what she didn't know, was that I wasn't really crying for me;  I was thinking about these guys:


And about how each of them now has a 50/50 shot of getting the same crappy diagnosis.  And I was thinking, "50/50.  A coin toss.  Heads or tails.  Those are pretty good odds."  And I was thinking about all the "light reading," I'd been doing.  And about how the disease affects boys.  And men.

I found out I have FABRY disease in October.  Since then, I have located a doctor specializing in the disease at Duke, and seen her one time.  I have had an EKG and an echo cardiogram.  A phlebotomist filled a dozen tubes with my blood, so they can run other tests, and check other levels.  (I also found out that my insurance won't cover any of this until I meet my deductible, because it is all considered "hospital care," since Duke codes everything as outpatient, even office visits.  So much for a $50 copay covering specialist visits. Their recommendation was to go see someone in a clinic:  no such person exists for me.  But thanks for that suggestion.)  We are in the process of figuring out a way to have the boys tested, hopefully within the next few months.        

I wish I could say I was doing a flawless job of remembering my motto for the year.  I'm not, but I am trying.

Here are some "tender mercies" I've noticed in my life so far in regards to this bump in the road:

--Living in a place where I can actually receive medical care.  A lot of people with FABRY have to travel to receive treatment.  Here, I have Duke and UNC in my backyard.
--The most amazing nurse practitioner ever.  She sometimes responds to my emails at 11:00 at night.  That's dedication.
--A kind, knowledgeable doctor.
--A supportive and loving family.  When I had my five hour doctor's appointment, Joy drove all the way from Kinston just to watch the boys for the morning.  I appreciated it so much.
--A sweet, caring visiting teacher (who still calls to check up on me, even though she's no longer my VT).
--Knowing that treatment is possible.  Just 20 years ago, this would have been close to a death diagnosis for my boys, if they have it.  Now, infusion treatment is available for me, and for them, if we need it.
--Having what is considered a more "mild mutation" be the one that runs in our family.

I came across this talk from President Thomas S. Monson, and it really struck home for me:

". . . there is the temptation to ask the question, "Why me?"  We are inclined to view our own personal misfortunes through the distorted prism of pessimism.  We become impatient for a solution to our problems, forgetting that frequently the heavenly virtue of patience is required . . . From the bed of pain, from the pillow wet with tears, we are lifted heavenward by that divine assurance and precious promise:  'I will not fail thee, nor forsake thee.'  Such comfort is priceless."  

I am a firm believer that in any situation we can choose how to react.  Is life sometimes pretty awful? Absolutely.  Could it always be worse?  Completely.

As President Uchtdorf so eloquently stated in April's General Conference:

"Gratitude is a catalyst to all Christlike attributes!  A thankful heart is the parent of all virtues."


  1. Wow! I had no idea. This was beautifully written Katie and I appreciate the window into what you've been through these last few months. My prayers will be with you as you discover more about the diagnosis and how to deal with it. The talks and quotes you mentioned were perfect and ones I'm going to jot down for later. Love you Katie!

  2. Katie, thank you so much for writing about this. I had no idea that your family has struggled with this, and now your quest for healthier eating (commendable) makes even more sense.

    I'm always so grateful that the Lord prepares me in little ways before the challenge hits, and then when it hits, He reminds me that I am prepared and can do it and He'll walk beside me as I go through it. So grateful you have gratitude as your friend in this challenge. She is such a great, strong, supportive friend.

    Thanks again for developing your gift of writing. I love reading the words you put together in sentences.

    (ps I've been thinking about your fruit snacks dilemma ever since you wrote the post a few days ago. I've made fruit leather for 30 years and it's the best. I wondered if you'd considered it. I'll bet your family would love it. I'd be glad to share what I've learned if you need any help.)

    (pps Have you seen that pinterest quote that says something like, "When you feel like your drowning, don't forget your lifeguard can walk on water." I've been thinking about that quote along with your fruitsnack fast.)

  3. Anonymous7:58 AM

    Dear Katie, You have such a gift with words. . . . .So sorry about your diagnosis. Right in the middle of my huge battle with shingles last November, the Stake RS Secretary called and asked me to talk at Women's Conference. The theme: "Holding On." They had nt idea what was going on in my life. I got off the phone, feel to my knees, and then put a paper in the front of my journal, "The blessings of shingles." The list is LONG and VARIED, but it has helped me realize how much our Father in Heaven loves us and our Savior is aware of each struggle and tear. Last week President Baker had a letter read in each sacrament meeting in Moses Lake Stake. The main point was for us to show our GRATITUDE this fast Sunday. Thanks for sharing about your GRATITUDE! You are in our prayers and will be in our fast. THANKS for sharing! Love, Tamara Hogsett

  4. Katie, this is "la otra" Katy. Your gift for writing made me feel like I was there with you in the HT parking lot. Your words can open eyes, hearts, and minds to what is transpiring in your universe. I miss you very much, and I am so sorry that you are dealing with such trials right now. However, I am grateful that you take the time to share your life with your friends through your words and experiences. We love you.

  5. Katie, I loved every written word in this post. Thank you for taking me there with you. I love the quotes you shared and the reminder that I can get through trials because the Lord love me. I know He loves you too. You have the sweetest little family. Keep going, I know He's with you! (and keep posting because I love your blog too...even though I never comment, ha)

  6. oh, katie, i'm so sorry you have to deal with this. i admire your attitude and optimism! i am sure Heavenly Father has many wonderful things in store for you and your family. i truly believe He makes our lives so much better than we ever could, we just have to trust Him even when we don't understand everything. i'm thinking about you!


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