I'm home from visiting Grandpa Harry. I had a wonderful time being with him and I feel more whole for just spending a few days being next to him. Harry is one of the most influential people in my life. He loves me and dotes on me like any grandparent does, but our bond is so much more. Harry “gets” me and I “get” him. The second I see him, squeeze his hand, give him a big hug, I feel, well, better.
Harry is incredible. One of the first things he said to me when I arrived was, “How are you feeling about leaving Gwendolyn?” And one of the last things he said to me before I left, as I sobbed in his arms, was “I need you to know that no matter where I am, I love you.” I do know this. I know he is rare and our bond is rare and I have always valued him. And I know I am so lucky for having him in my life and his influence for as long as I have.
I am so glad I went to see Harry — I needed this. But, I wouldn't say the trip was relaxing or rejuvenating. It is enormously difficult to confront the end of life. Harry isn't sick, but he is much weaker than he was a year ago. And given his age and SMA, the reality is that I may never see him again — I know it…and he knows it. And frankly that kills me.
And I find that when I get sad, well, my sad bag is so full that one thing turns into a whole lot of other things and it makes me angry all over again at SMA. Angry that this disease exists… is in my life …shapes so much of everything about my life and about Gwendolyn's. I hate it. And it makes me start wishing for things that I can't change. And, well, that opens up an entire can of worms. I don't like feeling this way. It doesn't do any good and I wind up just feeling sorry for myself.
Although I felt anxious the entire time, missed Gwendolyn, and worried that something might happen, Bill was really good about texting me pictures and notes to let me know all was okay. It helped to know Gwendolyn was having a lot of fun…and she had a great weekend with Daddy, Gramma, and Aunt Kristen. They went on long walks, went on the carousel, made cupcakes, played games, practiced writing, read lots of books and swung in the swing. She missed me and was very glad when I got home, but she was excited to tell me about all the adventures she had while I was gone. And I brought her a Count doll, which made her very happy.
I'm working on ending this pity party of mine. Being with Gwendolyn and Bill is about the only thing that feels good right now. I know I will kick this, but it's hard to simply will it away. And I miss Harry.