I’ve had a couple much-more-in-depth conversations than usual conversations with the kids in recent weeks.
One had to do with Miguel and Mariana and how they get along. They both incredibly sweet people to their younger siblings, to the extended family, to strangers, but they are just ruthless with each other.
Mariana came to me the other night, crying, because she wanted to tell Miguel that she loves him, but she was afraid to tell him because she was afraid he would laugh at her. She also said that the reason she has been mean to him over the years has been that people have been mean to her at school, and she doesn’t fight back at school, so when she comes home, she attacks Miguel because he’s there, not because he’s done anything wrong. I thought that was pretty insightful for a ten-year-old, and was proud of her.
Mariana was too afraid to tell Miguel about what had happened, so I promised to tell him for her. Things haven’t magically changed between them since then, but I have more hope that one day they will have a more meaningful relationship.
The other deeper conversation we had was a couple days ago. I told the kids about how I’m doing the Wahls Protocol, and how it’s basically a long list of different things you can do to slow down the onset of HD. Things like intermittent fasting, and eating a ketogenic, nutrient-rich diet, and exercise, and massages, and meditating. I told them I want them to know what their options are so they can make their own choices if they want to implement some of these things to delay the onset of HD. They weren’t totally excited about it. Miguel in particular was blasé and confident they would find a cure for HD by the time he got HD anyway. I told that, no, it would hopefully be a manageable chronic illness, but there wouldn’t be a cure, and delaying onset by a decade would really make a huge difference, if he could pull that off.
We also talked about how weird it was that some of them have the gene, and some didn’t. I asked the kids how they would feel if some of their siblings had the gene, but they didn’t. Miguel said, “guilty.”
Then I replied that I felt guilty because I have the gene, even though it’s not my fault. Mariana asked why, and Miguel replied that I feel guilty because of them (the kids). Miguel is pretty insightful as well.
Mariana then swooped in and hugged me and said, “Don’t worry, mom. Even after people die, they’re never truly gone. They live on in memories, and I won’t forget you.” It was the exact thing I wanted to hear, but also, so, so sad. My kids have some so many heavy issues they have to wrestle with. I wish I could make it easier on them, but I really can’t.
To my darling children, in case much diminished or gone when you are going through the decision about whether to get tested, or coping with test results, I want you to encourage you to follow your hearts about what is right. It’s such a personal choice trying to decide whether knowing is better than not knowing. If you do end up testing positive, I encourage you to keep on pursuing your goals and living in the moment as much as you can. The present is all we have. Try to find pursuits that give your life meaning, and take of yourselves. I get so much joy and satisfaction out of taking care of the four of you, and (less so) my volunteer breastfeeding work. Doing things that you love and that matter to other people will give your life meaning in the face of HD.
P.S. Happy birthday to my dear sister, Lisa! I love you!