Coming up on one year

October 23rd, 2015,  was the first day that I had a clue that something was seriously wrong with me, and November 21st was the day I was officially diagnosed.

It is so weird looking back on how our lives have changed.  I hope not too much for you kids. I have tried really hard to be honest and open with you, and neither ignoring HD nor dwelling on it.

Things are pretty different for you now because you very rarely saw your mother cry before, and this past year, I have cried a lot more than ever better, especially toward the beginning, when I was first diagnosed.

I am so sad that you will gradually lose your mother to this disease.

Part of what makes this all so weird is that I’m actually feeling healthier now than I was a year ago.   I feel like I’m doing just as good of a job of taking care of you all as I ever have, if not better. I am conscientious, and thoughtful, and empathetic, and plan things, and I do a really good job of all of that.

One of the most painful things is there are all of these well-meaning people trying to “lighten my load” by taking you all away from me for stretches at a time.  What they don’t understand (or don’t care about) is that this is my chance to spend time with you, and competently care for you, and I want to do as I can of that for as long as I can. So I’m making waves by fighting these people off, and I don’t care, because it’s worth it to have time together.

I love you all so much!


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