I really intended to write more “thankful” posts this month, and really have been making a conscious effort to be grateful for all that I have in my life, because I am abundantly blessed. But every time I’ve sat down to blog about these things I’ve just stared at a blank screen and nothing of substance comes out of my brain and onto the computer.
Since I wrote about being thankful for Charlotte last week, I’ve been thinking about what to write about Grayson. And that shouldn’t be so complicated, but it is.
I am thankful for Grayson, and a lot of things surrounding his life. All of these things I have written about before. I’m thankful Grayson made me a mother three years ago. I’m thankful that I am a better, more compassionate and empathetic person because of his struggles. I’m thankful for wonderful friends I have met because of him and our circumstances. I am extremely thankful that he is still here with us.
I am not, however, thankful for his disease. I HATE Leigh’s. I am not one of these people who wouldn’t change things if I could. I would trade it all if Grayson could be healthy. Leigh’s has robbed Grayson of everything; he used to have such a light, such a sweet, cheerful personality, and that light has dimmed to almost nothing. He doesn’t smile at me any more unless I’m singing to him, and he has no interest in anything “new”.
I’m struggling a lot with Grayson right now. Day after day is the same, and he seems to be slipping slowly away as the weeks and months fly by. My role as his mom is keeping him comfortable and safe, holding him, hugging and kissing him, and telling him I love him. And that’s about it. It’s a lot of work, but then it’s not. It’s mostly emotionally exhausting. I wish there was different work. I wish I had things to work on like discipline, potty training, teaching shapes and colors and letters, and figuring out his interests. I just wish for so many things that should be different for him.
I am thankful that for the most part, we are able to keep Grayson comfortable and happy in his own world. He loves school, where he spends the majority of his day, and at home seems content to lay in his beanbag chair or in his baby gym and listen to his music. I’m thankful that he is able to be included in our family’s activities, and that he is always surrounded by people who love him. I’m thankful that he still wants to be held, because holding him helps me keep connected to him.
I adore my little boy, and I am so, so grateful that I am his mom. I hate his disease and everything he is missing out on, but I have to hold on to the belief and hope that there are bigger purposes for Grayson’s life than I am capable of understanding. I’m thankful for that hope.