Hi.

This isn't a how-to. I'm not a pinterest mom. I'm a firm believer in faking it 'til you make it. This is for all the millennials out there who secretly have no idea what they're doing. I'm looking at you, millennial caregivers. 

The Question of Testing

As I continue to read about families who are dealing with Huntington's Disease, stories keep popping up of people at-risk who decide not to get tested. Obviously everyone copes in different ways and although I want to understand other points of view, I honestly can't understand why someone wouldn't want to protect their family by getting tested. Yes, the test was scary. But, to me, the fear of the unknown was greater than the fear of learning my own results. And, further, I'm so happy that technology is where it is so that I can protect my babies and their babies after that. 

To me, if there's something out there that I should know, I want to know. I want to prepare for the future. I don't think my personality would allow me to live my life completely in the dark. 

Maybe my need for knowledge is because I grew up during a time when information was always easily accessible. Obviously my mom didn't grow up with the internet. She wasn't able to connect with families across the world through community boards or join fundraising groups or anything that I am able to do. She must have felt very isolated back then. She must have felt like she was the only person in the world dealing with this. 

In a way, I understand why my mom didn't test until recently. My parents waited and waited for a test to come, but it didn't come until after my brother and I were born. I guess at that point you think, well, what can you do except live your life? Of course our lives would have been easier if she was tested earlier, but the fact that my mom so easily agreed to be tested when I brought up having kids of my own proves that her love for us was greater than any fear she had. Why would we want to live with that fear of the unknown if we didn't have to? Why would we want to potentially pass on this horrific disease to another generation if we didn't have to? 

I understand why some people put off the test when they are younger. To be young, single and oblivious is one thing. To have a family that depends on you is entirely another. It seems selfish to me to put your own fears before your family. If I hadn't gotten tested, all that would go through my head when I looked at my future children and grandchildren would be, "Do they have this??" Obviously IVF with PGD is very expensive, but to know that this disease stops with me is worth any amount of money. 

Okay so what if you do decide to gamble on your future by not testing and you never get a symptom?  Great, right? Possibly. Or, you could simply be in that Huntington's Disease gray area. People with an HD range between 36 and 39 repeats are in a reduced penetration area. You may or may not develop symptoms in this gray area, but you still have a 50/50 chance of passing the HD gene on to your children. That's still a 50/50 chance of inheriting either a reduced or fully penetrated gene. 

I'm trying so hard not to be judgmental. Everyone's method of coping with this disease is different. Everyone has a reason for getting tested or not. It still makes me livid to know that there will continue to be babies born with this faulty gene when it could be avoided. 

I could go on for hours. I will never understand. But I guess it's not for me to understand.


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Two weeks after I wrote this post, I wanted to edit it slightly. I just want to add that it isn't my place to criticize how other people deal with this disease. My method of coping is working very well for me and I wouldn't change anything. But if someone else wants to live in denial, they are free to do so. Maybe denial isn't the right word. A state of oblivion? I don't know. I'm reading a book right now called Kabbalah: The Power to Change Everything. I'm not a religious person, but in times like these I feel like I need to find some spirituality or motivator. Essentially, using the principles of Kabbalah, the book urges that in order to change the world around you, you need to first change yourself and your outlook. The author talks a lot about getting rid of your ego in order to find happiness. I think my ego was getting in the way with this post. Just because my path has been right for me, doesn't mean it's the right path for everyone. 


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