Gratitude

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."