16-19: Two little numbers that changed our world.

16 - 19

 Two little numbers that mean nothing to the rest of the world, but mean the world to me, Jason, and our kids. 

On February 23, 2026, 37 years and one day after my mom passed away due to complications of Huntington’s Disease, I learned that I am HD negative.  My CAG repeats, 16 and 19.  "CAG" is the sequence in my DNA where HD is determined. You have a CAG repeat for HD too. Both of my number were normal, as normal as any of you who are not HD positive or currently at-risk for HD.

On October 19, 2025, I decided it was time to start the testing process.  Nothing dramatic happened to make me decide this.  For most of my life I had feared having HD and many days, probably more than half, I thought I had it.  Whenever I was pregnant, I was forgetful and my first thought was, well of course I have HD.  I knew I wouldn’t test until I at least turned 50 because my mom and sister both died at age 49 and I needed to get past 49 years old before I could face a potentially terminal diagnosis.  I also know that for many years, I was not in a place mentally where I could handle a terminal diagnosis.

With three adult children and five more that are all very aware of what HD is after growing up with it in the fore front of our family, I decided that it was time for me to be tested so that they would know what their futures could hold.  They already knew that HD was possible for them but if I tested negative, they would no longer have to wonder.  So, I guess, in essence, I was tested for them.

Only Jason and I (and three close friends) knew that I was going through the testing process.  We did not tell our kids, as we had two at college out of town/state and I did not want them to worry.  I will spare you the details of the process we went through other than to say that the people we worked with were amazing, the process was frustrating at times and the walk through the process was lonely at times.

In January I called my genetic counselor and told her I was ready.

On February 9, 2026, I went for the blood test.  One tube of blood.  Less than I think I have ever had taken out for a medical test, but likely the most valuable test of my life.  We were scheduled to meet with our genetic counselor on February 23rd to receive the results.

The next two weeks were nothing unusual.  Giving Hearts Day took much of my time.  Jason was gone on a work trip for 6 days.  School, work, sports, parenting….all the usual.  For the most part I did not think about it.  Jason and I have talked about the what if’s for years and now it was here.  A few bucket list items were noted.

On February 23^rd Jason and I made our way to Sanford Clinic to receive the results.  Honestly, I felt nothing going in.  Nothing.  No nerves.  No anxiety.  Nothing.  We didn’t have to wait long for the counselor and a student to bring us back to the office.  There was a little talk but quite quickly they shared that my test came back normal.  Normal.  Normal.

It was then, that I realized the beast that I had been running from for so many years.  The response my body had was not what I expected.  I cried, uncontrollably for a long-time.  Happy, yes.  Tears of joy.  No. 

Once I was able to collect myself, we were told my numbers.  16-19.  She handed me my results and I said I was going to frame them.  16-19.  Two little numbers that mean so much to me.  Jason and I walked out of her office and hugged before we left the floor.  We walked to the car in silence.  When I got in the car I lost it.  My heart was racing.  My smart watch alarmed.  My legs and chest were heavy.  I couldn’t breathe.  I had tunnel vision.  I was shaking.  This lasted 15 minutes or so.  We drove away once I felt okay and soon it happened again.  After talking with a good friend who is also one of my doctors, I now know I had two panic attacks.

Panic attacks?  But why?  A friend who has experienced similar described it best “you have been running from a lion for all these years, running scared, and now your body doesn’t know what to do”.  Exactly!  I have been running scared.

That afternoon we called our oldest daughter, Autumn, to tell her the results.  Autumn was made aware of the test between February 9^th and the 23^rd as she decided to do a documentary on HD and the testing process.  The relief I heard through the phone made it all worth it!

That evening, we had dinner with our six kids who are at home.  An ordinary dinner with an extra ordinary ending.  After we were done eating, I told the kids we needed to have a quick family meeting and asked Olivia to Facetime Hannah in Montana.  Immediately they all started wondering.  The number one suspect.  Is mom pregnant?!  No! 

An ice cream cake with the word NEGATIVE in purple gave the news away after guesses ranging from a trip to New York to a huge grant for the farm and one correct guess.  The kids were happy.  I was happy to share the news with them that they are free.  They can no longer have Huntington’s Disease.  It is taking time to sink in, still.

I am happy, of course.  But I am still trying to figure out how to live without this fear.  I recently listened to a pod cast about how often, women like me, become numb to the world because they have been in survival mode for so long and their brains, actually rewire to keep them in that mode.  How they become numb to emotions.  I think that is where I have been for many years.  Numb.  Because I have been doing and running for so long.  Continually busy, whether it be with my family, my work, the farm, a fundraiser, coordinating this or that….thinking I was burnt out, when in actuality my brain has made me numb.  Because I have been running from Huntington’s Disease since I was a child.

Now what?  I thank the Lord for a negative result and mostly because my children will not have to fear this dreaded disease and Jason can breathe easier knowing that we have a greater chance of growing old together.  I am working every day to feel the joy that I experience.  To truly feel it and not just experience it because I know that I can only count a few handfuls of moments when I have truly felt joy in the past several years.  I want to sit in those moments and take the emotion in, no matter what it may be, because I will not allow myself to be numb any longer.