The Results

Candles illuminate the room, a peace has settled over the house, and I click on a Pandora station, a song comes on that is by no means a coincidence. The title of the song is, “Oceans (Where Feet May Fail)”

 

Five years ago after my dad was diagnosed with Huntington’s Disease, I immediately began to the process of deciding whether this was the time to move back home to Des Moines. This song came on the radio and I broke down in a flood of tears, knowing then my time had come to move home.

 

The same song is the music I walked down the aisle to at our wedding. And now it plays during my reflections on yet another pivotal moment in my life. I do not like to share emotion in person. In fact, I even hide my tears from my therapist. And yet, this week I experienced something that brings tears to my eyes each time someone mentions it and even as I write these words.

 

Over the last few months, I have been going through the process of getting tested for Huntington’s Disease, a genetic brain disorder that I had a 50/50 chance of receiving from my dad. A disease I have watched try to take hold of his mind and body over the last five years as it began to really show. The same illness has caused me to subconsciously wonder every time I choke, trip, have a headache, a blip in my memory, a moment of fidgeting… whether I also have Huntington’s Disease. For years I have known I was going to get tested and every day the thoughts have been subconsciously present.

 

A constant thought over the last few months, basically since we had to decide whether Dad needed a feeding tube, has made me wonder about even more painful things to come. The night before my test results, last Thursday, and for many weeks before that I would often look at Dad training at my studio and become deeply saddened about all the “last times” we will never get back. The times no one could give me a warning were going to just suddenly end one day without ceremony.

 

Before the feeding tube, my Dad bench pressed with a barbell, he squatted with a dumbbell, and could even do some dumbbell incline bench presses. Now, he can still do many activities in the studio, in fact he can do activities many people with HD cannot do, and I am incredibly grateful. Yet I constantly look at the lifting rack, biting my tongue to hold back the tears, and wish I had known we would never get the chance to bench press again. I look at pictures of us climbing through trails in the woods or over rocks and just wish for one more time. I think of his face behind the video camera for all our Christmas and birthday events. I see him in the garage bent over the car, hitting his head on the hood as he stood up to answer a question. So many moments gone, but memories precious.

 

And the night before I got my results I wondered if that would be the last day I would be on this earth with the privilege of not knowing, the last hours before life would forever change. I had been extremely calm and at peace about this process until those last 24 hours. Even in my fear of being diagnosed, I knew that God would shine light through the darkness and that I could choose to rise from the ashes…. like my mom and dad have day after day. I had determined long ago that if I received a positive diagnosis, I was going to do something with it while I had the time. My work schedule would change, my goals for my business would shift, family and friends would be priority, and my own health would come sharply into focus. And Dan and I would travel. Whatever we had to do to make that happen, we would do. Dan and I have always rolled with the punches together. And I knew we could and would again. But I was scared. I had no idea I would fight tears all night Thursday into the day on Friday.

 

I went through the day as planned. Telling less than a handful of people what I was doing that day. Despite my best efforts, I had two more friends reach out after noticing some things. One friend texted to check in and another just showed up at the studio to see if I was okay. Those moments, wow. My eyes were opened to just how truly blessed I am with quality people in my life. I decided to lift some heavy weight, deadlifting to bury the emotional weight and feeling of defeat that was trying to bury me. I then went to get a massage to calm my mind. I came home to my ever supportive and loving husband, and we headed down the road to Iowa City.

 

After driving over an hour and a half, the news seemed to come so suddenly. Months and years of build up, to sit for just a couple minutes in the neurology clinic and hear the words from the doctor’s mouth, “You are negative. You do not have Huntington’s Disease.” She stretched out her hands to give me the paper with the blood results… they were well below the range. I was very much cleared. I looked at Dan, we said a few words to the doctor, thanked her and walked out.

 

Disbelief. Confusion. Relief. Sadness. Joy.

 

I cannot begin to explain what those moments and the hours and days following have been to me emotionally. And I was completely unprepared for how my dad would react. All I wanted to do was get to my parents’ house to tell them… before anyone else.

 

We arrived and I asked Mom if she knew what the range was because I wanted to simply hand her the paper with the blood results. I let out a smile and she burst into tears, knowing what that smile meant. My mom is one strong woman. There are no words to tell how I feel about her even writing this. Only tears of gratitude and appreciation for her through all of this.

 

And then came the moment, I went up to talk to my dad. He lay in his bed with his CPAP mask over his face. I asked him if he knew where I went that day. He immediately got very antsy….

I have to interrupt myself to explain that lately Dad is very restless except at home in bed. He also does not talk very much for a few reasons. Usually, the most I hear him talk is when we are doing flash cards for piano.

 

As he got antsy he started sitting up, and I said I went to U of I to get my HD test results. He took his mask off and shut the machine off trying to sit up in bed to look at me. I told him they were negative and I did not have Huntington’s Disease. His eyes got so wide. He said, “that’s good. That’s really good. That’s good.” I said I just wish he did not have to have it. His mouth was gaping open which is actually what he does when I tell him to smile now. I believe he was smiling and in his eyes I could see both clarity and an expression of tears. I will never forget those moments as I never expected that reaction. He kept following me around the house and kept giving me a hug, over and over again.

 

I never knew what survivor’s guilt meant until that moment. If I could take on every ounce of his pain and what he has been through just to have him back for an hour, I would do it in a heartbeat. I miss his voice, his cheesy jokes, kindness. I miss him visiting me every single Saturday at my job in high school and college – smothering his cinnamon roll in peanut butter. And yet, I am so grateful he is still here. I am grateful that as my mom gave me another hug, he also followed me to the car and tried to hug me.

 

Learning that I do not have Huntington’s Disease made me wish even more that my dad did not have it. I cannot begin to explain the deep sadness that washes over me just typing those words. In a way, having negative results made me so much sadder that he has HD. That I was spared but he was not.

 

And yet, this is the journey we are on. I would not change it or control it because I know there is a plan and a path I do not see. And I continue to find my peace in the promise his body will be restored one day. That through Christ’s resurrection, there is no power in HD. And I am so grateful for the breath in my lungs and for being saved from this immensely painful disease. I’m grateful that because I was spared, so also my husband, family, and friends are spared from watching me go through what I have to watch my dad go through every day. For my mom, knowing in great detail what HD means, that she does not have to watch me endure it.

 

However, now I struggle. I grapple with the “what now’s” and realizing that all my priorities should be the same as if I had been diagnosed – I do not have HD but tomorrow is not promised to anyone. And I am listening for what comes next. I am allowing myself to process the emotions that not even writing can help me put into words. Absorbing the beautiful disaster, I sit here grateful and watching the horizon as the weekend comes to a close and a new day dawns on this path we are on. I am beyond grateful for this miracle and I wait in peaceful discontent… searching.

 

But still, I rest in the promise spoken in one of the song’s we sang this morning, again with no coincidence:

 

No guilt in life, no fear in death,

This is the power of Christ in me

From life’s first cry to final breath,

Jesus commands my destiny

No power of hell, no scheme of man,

Can ever pluck me from His hand

Till He returns or calls me home

Here in the power of Christ I’ll stand.