01.18.15What a Ride

A sweet friend challenged me this week. Not to post photos on social media or answer 20 questions about myself—she really challenged me, gently bringing up a negative pattern she saw in my life.

We were sorting through some difficult questions when she explained that I carry a heaviness with me. I’ll be honest, my first response was to think, “Darn right I have a heaviness about me. You would too if you were facing what I am.”

But, by God’s grace, I kept my mouth shut, determined to take in her words. When I didn’t respond, she asked a few questions, unwilling to just throw a comment at me and leave me to figure it out alone.

Two questions in and I was crying, surprised at my own tears. We uncovered pretty quickly that part of the heaviness is how I cope day to day with my diagnosis. What can be innocent conversations about future plans for others are usually heart wrenching and utterly overwhelming for me.

When you’re facing a terminal disease that hasn’t surfaced yet, every day can feel as if it’s going to be THE DAY the flip switches and you’re officially symptomatic. Creating dreams and goals just seems like asking for disappointment.

As we talked further, I realized something else: underneath my stoic facade was a shocking amount of bitterness. I truly felt that I somehow deserved a better hand than I had been dealt. I mean, come on, I’ve sort of got my life together. Shouldn’t I receive good things? Shouldn’t my road be easier?

Besides, it seems everywhere I look, other people are walking a fairly simple path. Sure they may have hurdles to climb over and the occasional dip, but they aren’t facing a gaping chasm.


Here’s what’s even crazier—I also had the gall to pray, “God, you knit me together in my mother’s womb. You could have easily left the gene for Huntington’s out! Why allow it? Why me?”

I’m not kidding when I say I thought I had dealt with these things. I thought I had put the anger and bitterness behind me. I think I actually just stuffed it down and let it fester while I fought to maintain some semblance of control.

Discovering all of this drove me to the feet of Jesus, which I suspect is the best place any of us can be. I asked Him to reveal my thoughts and attitudes—to make plain my motivations. He did. Oh how He did. And it wasn’t pretty, friends. I think I’ve spent more time this week in prayer and crying than I have in years. And you know what? It’s been one of the most amazing weeks I’ve had in years.

Here’s what the Lord has showed me so far: I say I trust Him to give me His grace for the road ahead. And I do. I say He is in control and Sovereign. And I really believe He is. But, I’m scared. I’m scared of the pain that is likely coming. And I’m angry. I don’t want a walk a hard road.

In fact, I realized that my attitude has been, “God, I’m going to walk this journey you put before me, but I don’t have to be happy about it.”

Really, Shannon? Really?

Even as I type this it’s mind-boggling to me. How could I have operated this way for so long and not realized it? We really are self-deceptive creatures.

But He gives us more grace. Praise Him for that.

I may have a hard journey ahead, but I’m learning that I also have the privilege of discovering what it means to love God and love others more fully. And, the rockier my road gets, the more I’ll have the opportunity to experience God’s peace.

I know God differently today than I did a week ago. I know myself differently today than I did a week ago. I’m so grateful my friend took a chance and said something that could have been taken the wrong way. I’m so grateful we serve a God who wants to reveal Himself to us—who wants to shape us into His likeness.

So, surprise, surprise, I still don’t know what lies ahead. But I do know the One who holds me. I know the One who is able to give me His joy and strength not just at the end of my journey, but every step of the way.

Can’t wait to stand before Him and say, “What a ride, Lord. What a ride.”

4 thoughts on “What a Ride

  1. Aunt Sheryl

    Shannon, it’s so heart-wrenching for me to know your suffering and pain. There isn’t a day that goes by that I don’t wonder myself if I have Huntingtons. With that comes guilt if I don’t. Along with some relief. I’m so proud of you, facing this head on. You are not alone my sweet one. Knowing your Savior is with you each and every day IS shaping you and molding you for whatever He knows is ahead. I believe God is using this blog to HEAL you in the process. Maybe not in your physicsl body, but more importantly in your relationship with Him.
    I love you, my sweet and very precious niece.

    1. Shannon Post author

      It’s heart-wrenching for me to know you wonder that day in and day out. I think, for some of us, it’s easier to know. For others of us, it’s much easier to not know. You don’t need to carry guilt for not having HD. You have cared for your family members who do have it in amazing ways. You’re absolutely right about this blog—God has already used it in powerful ways to bring healing in areas I didn’t even realize I needed it. I’m excited to see what He does next. Love you and thank you for walking this road with us!

  2. Stephanie

    As I read, I couldn’t help but think…she’s taken the words right out of my mouth. I struggle too. I think it might be time for me to have a reality check and an outpouring of tears. Then the breakthrough will come. God is faithful to move His children from glory to glory. He is our ever-present help in time of need. Thank you for allowing me to walk with you and in turn learn more about myself. You truly are a blessing!

    1. Shannon Post author

      I know that feeling well! And you’re right—God is so faithful. Thank YOU for your sweet words of encouragement. They mean more than I can say!


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