He Didn’t Have to Be

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I was in the car jamming out to older country music bringing out the redneck in me (ha) and “He Didn’t Have To Be” by Brad Paisley started playing and I got allllll in my feels.

It starts off with the lyrics below. I was about 5 years old when my previous step dad (Joe) came into the picture. He passed away back in 2011 and I do miss him a lot. He raised my brother, sister and I like we were his own and I am so thankful every day that this man came into our lives.

When a single mom goes out on a date with somebody new
It always winds up feeling more like a job interview
My momma used to wonder if she’d ever meet someone
Who wouldn’t find out about me and then turn around and run 

I met the man I call my dad when I was five years old
He took my mom out to a movie and for once I got to go
A few months later I remember lying there in bed
I overheard him pop the question and prayed that she’d say yes 

And then all of a sudden
Oh, it seemed so strange to me
How we went from something’s missing
To a family
Lookin’ back all I can say
About all the things he did for me
Is I hope I’m at least half the dad
That he didn’t have to be 

Huntington’s Disease

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Opening up about Huntington’s Disease.

Easier said than done.

It’s so easy to keep it to myself.

Then I won’t be judged

Or criticized.

 

Why won’t you get tested?

Wouldn’t you feel better knowing if you have it or not?

Aren’t you thinking about your future?

Your Husband’s future?

Your children’s future?

 

Those are only a few of the questions I get asked when I tell people that I’m not ready to be tested yet. I would rather not know right now, because honestly….if I do have the gene…dying would seem far better than living with Huntington’s Disease and putting my family through that, my Husband.

Do I want my Husband to end up being a caretaker of me?

No.

 

If you don’t have the lucky (ha) chance of having the gene, then you have NO ROOM to talk. You have NO RIGHT to tell me that I am selfish for not getting tested. It’s so easy sitting behind the sidelines voicing your opinion when you don’t have to worry about it. To get tested you have to go through counseling for THEM to tell you if you are ready or not. You don’t even have the final decision.

 

You don’t have to worry about hearing the horrible news that you will have the gene and within a couple of years, you won’t be able to do anything for yourself. You will have to be 100% taken care of. Adult Diapers. Feeding Tubes. You can’t talk. You can’t walk. Your personality changes. You are no longer yourself. You can’t control your movements (Chorea). Nothing will ever be the same. There’s only medicine for the Chorea, there are no medicines to slow down the progression. Each person is different so there is no way to get ready for it. Every lifespan is different. There’s no cure.
You don’t have to worry about hearing the amazing news that you don’t have the gene and you never have to worry about it….but then the horrible guilt overcomes you because you made it out without having the gene but one or two of your siblings didn’t.

 

You just can’t win.

 

But no one has the right to tell me what to do or to try to talk me into doing it.

To question me and try to pry.

Don’t do it.

New Hope for Huntington’s Disease Patients

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The Skeptilogicon

Exciting news! There is a new drug trial beginning for a treatment of Huntington’s Disease (HD). HD is a truly nasty disease. It tends to onset in your forties and slowly robs you of your personality, your bodily function and your cognitive abilities. Worse, it is a genetic disease that is inherited in an autosomal dominant manner; this means that it’s a fifty fifty toss up for each of your children as to whether or not they will also go on to develop the disease. Over the course of a decade or more you will lose everything that made you you and there is absolutely nothing you can do about. There are no treatments, nothing that will slow it down and nothing that might save your children suffering the same fate. Until now.

That’s the hope, in any case. The trial is led by Professor Sarah Tabrizi, a vibrant doctor…

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I’m afraid of time.

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I always loved Bailey when watching The Sisterhood of the Traveling Pants…this sums up how I feel.

I’m getting to the point where I want to get tested, just because I want to know if my days are numbered (aren’t they already?). It really got to me the other night when thinking about it.

I want MORE THAN ANYTHING to get tested and the test come back negative for HD…but don’t we all?

I just want to live a long and healthy life. I don’t want to worry about having symptoms if I drop something, if my toes twitch, or any other part of my body twitches. I’m tired of worrying.

It costs so much to get tested and I really don’t understand why. That’s a big fall back on why I haven’t gotten tested, the insurance won’t pay for it even though it’s a blood test. I’m not ready to find out if it’s positive, but it would ease the worrying of not knowing….or would it?

Huntington’s and violence

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I know Huntington’s Disease come with a ton of symptoms.

I had a rough childhood.

I grew up with domestic violence every day. My dad would beat the crap out of my mom. I remember most of it but my brother and sister don’t because they were so young. He is/was my father, I know he loved us very much. But having all of that in the back of my memory, it’s hard to think of him like my brother and sister think of him.

The question I continue to ask myself….would the Huntington’s Disease have made my father so violent that early? I know that he got the little symptoms really early without any of us knowing. My mom had no idea that Huntington’s Disease was in his family, and she had no idea that he had the gene when she divorced him. She had no idea what was going on. All I know is that she had a court order against him that he wasn’t able to see us because of the violence and abuse.

When my mother found out he was sick, she allowed us to go stay with him at my aunt’s house a state away as much as they would let us (which was twice a year). We saw him as much as we could until he passed.

My uncle says that when their father had HD, he was very violent and they dealt with domestic violence a well.

My horrible anxiety comes from my childhood :/

How to forgive?

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I have a hard time forgetting things.

I am great at holding grudges.

One thing that I absolutely cannot get over is how my siblings and I were treated by my “Step Family”. My mom and dad divorced when I was five years old. The only father figure I ever had in my life was a man named Joe. Joe was a part of my life for more than 15 years. We were his children and he referred to us as his children. The last time I saw him was while he was in the hospital, and he introduced me to his nurse as his beautiful daughter.

After he passed away, we weren’t put anywhere in his obituary. Only his “real children” were listed. We were more family to him than his entire family and it pisses me off. We spent every holiday with him, visited him weekly and took him places.  He will always be my step father whether or not his POS family thinks so. It’s sad that all they wanted was his material objects. I could care less about any of that. I would rather have him back here.