I will continue to give my hope to him

“I don’t have hope….” My Huntington’s Disease Warrior blurted that out recently.

We had been invited by a friend of mine to speak to a group of college students about Huntington’s Disease.

I had asked Nathan if he wanted to go or if he wanted me to do this on my own (I gave him the choice all the way up to the time to go). He wanted to go and to give awareness to HD just as he’s always done.

He was fine on the way, fine just before everything started….so imagine my shock when he blurted that out about halfway through.

My husband always has a smile on his face. We get the most comments about his smile and his positive attitude.

I don’t know if this happened because in just under two weeks from my writing this, we will hit the 10-year mark since his diagnosis.

That lack of hope for my warrior has been lurking in the back of my mind for a while now. It’s why I’ve been fighting so hard for people like my husband and everyone in between.

Needing to give my husband his Hope back, all the while trying to pretend I still have some left for me.

Sometimes, us Caregivers may tend to seem like we “overlook” certain things when it comes to our loved ones…. Don’t be deceived, we see them…. especially the things we can’t admit to ourselves out loud.

I’ve known the day was coming when Nathan’s Hope would start to run out, it has in the past when he was passed over for clinical trial due to his BMI being 1 point over the requirements.

So, I gave him my hope then, too. He didn’t get to see the devastation I felt when we were told he couldn’t participate.

What he did see was a positive attitude, the “well, there’s another study that’s about to open that has stricter parameters, let’s try to get the BMI down, and we can see if they’d allow you to try for it”.

So, for the next couple of months, that hope turned into determination. The determination to get in, to keep his hope, and in the side process, a friendly competition between husband and wife on who could get the most steps in on their watch apps.

It was so much easier then to give him hope, even at the cost of mine. Back when he could still walk, still talk, and do things for himself.

It worked back then, and yes, he got into the original study that the BMI was too high for after they had made some changes.

It’s so much harder to give him my Hope now with him being further into the disease. The fact I see/feel like there’s not a lot of hope for my husband.

My husband sees that he won’t be allowed into any kind of study. Which in turn breaks his heart as well as mine. He’s not being given that chance to fight for his children like he once was.

He’s seeing himself running out of time. Out of time to be with his family, out of time to see this disease get defeated, out of time for everything.

He still has quality of life, can still do things with his family, however that’s not the same in his mind.

In his mind, at the moment, is that he has no hope. And it’s on repeat.

I tried, while speaking to the students, to redirect him as well as explain that sometimes HD Warriors get stuck on a thought and can’t let it go.

Of course, after saying that, it’s like a broken record of thought, I realized that most of the audience most likely had no clue what a broken record was, so I did use that later to bring a smile to my husband’s face.

Gave examples from our past when explaining that we use twisted humor when his chorea began to worsen. While hoping they are seeing a teaching moment and the reality of HD and not that I’m ignoring them or him while trying to handle speaking to them and redirecting/comforting him.

So here I am, a day later, and I can’t shake the “I don’t have Hope” from the one person who has been the most positive about our journey.

Aside from the prayers that SOMETHING will happen and come along to help our mid-stage can’t be a part of the process warriors, I have to try to accept the fact that there’s nothing I can do.

Which has been a hard pill to swallow. So in this case, I’ll continue to choose to be hopeful. I’ll continue to keep the bit of Hope for people like my husband alive by continuing to focus on trying to help others. They say what goes around comes around, so in turn, I’ll also continue to hope and pray that it comes back in a way to help my husband.

I’ll continue to give my hope to him and pray that it sustains him. And I’ll continue to fight and pray for all of our Huntington’s Warriors that SOMETHING comes and comes soon.