Confessions of a Potential HD Carrier, Part 2

I’m back. I’m excited to take on the NYC Marathon for the second time this November! The 2015 NYC Marathon changed my life. Since then, I’ve had a baby boy, which has given me a whole different perspective and reason to fight to Cure HD. Please stay tuned to my NYC Marathon journey here on my blog/website. 

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I do not like to talk about it. It is something that is always on my mind, but I am constantly trying to “cast all my cares on the Lord” (1 Peter 5:7) and remind myself that many people deal with much worse scenarios and suffering in their lives. Huntington’s Disease is a horrible disease, but I do not take any disease lightly. Anyone who has suffered extensively mentally, physically, and emotionally is a survivor. You are not strong because of the title of the disease, but because you choose not to give up or give in to the disease. You are strong because you choose to support your family members battling the disease. You are strong because you hold the survivor’s hand as they enter a treatment or surgery. It is facing the challenges HEAD ON and choosing to find a glimpse of hope through turmoil. It is one of the reasons I pursued my MA in Counseling – to help people realize and recognize how emotionally taxing it can be to handle the emotional and physical stress that rises to the surface when many unanswered questions begin to swarm our minds.

 

You may have lost a loved one to cancer, Parkinson’s disease, from a heart attack, or anything else – your entire world changes. You wonder what is next for you. You wonder how long you have to live and when your last breath may occur. You realize that life should not be taken for granted. Life is truly a precious gift from above.

 

These are the things I try to remind myself of daily. When I think back on my father’s decline from HD and being young and not really grasping the concept of the generative disease, these questions rose to the forefront of my mind when Russ and I were engaged. What if…? Is it wrong to marry this man, not knowing if I will begin declining in my late 20’s? Is it fair to him? We married and I realized that God gave me a partner, someone to hold my hand and help me see that life cannot be lived in the WHAT If’s, but learning to treasure moments and not take life for granted. Russ is “my person.”

Then, when Russ and I suffered our miscarriage a few years ago, I wondered if it was a sign. Do I have the disease and was God trying to protect this child from inheriting the gene? I lived worrying too much. I lived expecting the worst rather than being thankful for the time I do have. When I was chosen to join the Huntington’s Foundation Marathon Team two years ago, I was so thankful, however, that can of What If’s re-opened and began spewing all around me. While I am still praying about being tested and going through that entire process, I am thankful that I am here today. I am thankful that my father’s life and fight taught me so much about life. One of the biggest things I felt when he passed away was regret. The Lord really spoke to me about taking time to love others rather than being so consumed with education and work. While they are both very important and something I do want to take seriously, loving others is one of the reasons we were placed on this earth.

So, long story short – I still have a 50/50 chance of having the HD gene, however, I am here now. I am thankful to be on TEAM HOPE, for the Marathon and for the rest of my days. I now have a son, and that has given me a whole new sense of wanting to find a cure for HD. Not only am I at risk, but so is my precious baby boy. THAT IS WHY we must fight for a cure. 

Jesus is my hope now and forever. He can use the highs and lows of life to mold us, shape us, and draw us closer to Him.


I am running the NYC Marathon this November 2017 for:

  • My son – to one day be able to tell him that impossible is not a word. To possibly save him from this disease. I want to teach him never to give up on your dreams and never give up on life. If I have HD – I want him to know I left the world without giving up hope. 
  • My dad – I am doing this race in memory of my dad and to fight a disease that took him way too soon. 
  • Myself – I want to continue learning the lesson that we can do all things through Christ (Phil. 4:13) and we should never stop fighting the good fight. 
  • For YOU – for those who have spent too many days giving up because they didn’t think it was possible – this is FOR YOU! You can live out your dreams too. 

“Blessed are those with cracks in their broken heart because that is how the light gets in.”
― Shannon L. Alder

What do I have to do? 

Not only do I have to train hard and raise $3500 for the Huntington Disease foundation by October, I want to raise awareness. Please consider checking out my fundraising page for more information on the disease. Please share my story here with your friends. All proceeds raised go to Curing HD — I do not receive any of the money. All donations are also tax-deductible.

 

2017 NYC Marathon – HDSA Fundraising Page

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