A message to my daughter after her tenth birthday

Dear Mariana,

It was so great to celebrate your tenth birthday with you!  It was so nice to have a break from all of this HD drama and be swept up in your glow-in-the-dark-balloon-karaoke dance party with you.

I personally could not be prouder of the person you are growing up into.   You are so poised, mature, thoughtful, and focused!    I love seeing how your four-year-old little brother, Nicolas, looks up to you and trusts you so much and has so much faith in you — its because you have earned his trust so completely.

I’m so impressed with the way you plan things in such detail so far in advance. This year, and last year, too, I was proud of the way you, of your own initiative, planned your birthday slumber party. You came up with a detailed schedule for what you wanted to be doing at what time, and you researched party games, and planned your party decor, and menus.  You even included a shopping list.  And researched how to help everyone get along at birthday parties.

I was just so impressed and delighted by how thorough and thoughtful you were. You amazed me so much.

I was also impressed by how hard you worked  to meet your goal of being on the top team in volleyball. Once you set that goal for yourself, you were relentless in squeezing in every opportunity you could to work on your volleyball skills, and I was so impressed by how focused you were over weeks on end.

I also really cherish our relationship the way it is right now.  I feel honored to be your mother.  I loved that you trusted me to tell me when you had problems at recess, and I love that you talk to me about your feelings and plans in general.

I am impressed by how  generous and loving you are to me.   You give me backrubs just to show me love and even offered to set up a backrub schedule for me.  And the other day when I broke down crying in the car over HD, you held my hand and told me that you would fight this with me. It was just what I needed to hear, and I feel so, so grateful to have your love and support on my side.

I just feel devastated at the idea of HD marring our relationship.   It makes me super sad to think of me becoming less responsive and empathetic to you over time.  I just have a desperate hope that there’s a way around that somehow.  I can’t bear the thought of being absent from your life when you are a young adult, or being someone who causes you a lot of frustration and pain.

The thought of not being able to truly be with you for  at least a few decades makes me want to scream!    Our relationship is so good and so important to me, and if there was anything  I could do to protect it from HD, I would!  I feel heartbroken to be so powerless against this disease.

At your birthday celebration,  I hugged you and said, “Happy birthday, sweet girl!” and then Nicolas hugged you and said, “Happy birthday, sweet girl!”  It was such a beautiful moment, and but so bittersweet because I know now that even though it hasn’t struck us yet,  HD is lurking in the shadows ready to wreak havoc on our beautiful, normal, family. And the pain of that is incredible!


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