If this post makes any sense to you, you are most likely crazy like I am. With that said, let me set the backdrop. Claire and I have been going to Music Together once a week for over a year. At the start of every class we sing the same song and pat our hands on our legs to the rhythm. Claire’s little tiny gene mutation for some reason causes her to have a lot less use of her hands than the other children. Today the teacher asked who knew what song we would start with. Before any child could shout out, Claire quietly tapped her hand on my leg three times, to the rhythm of the Hello Song. She knew, she just can’t tell us. During the songs she had fun and laughed and played until the egg shaking song. My heart breaks as she sits there and looks at everyone else and gets sad. I pick her up and dance in an attempt to distract her from the disappointment of not being able to shake her egg. At the end we sit in the circle for the Goodbye Song and again, she quietly tapped her hand on my leg, hitting about every 12th beat. My heart broke and I tried to fight the tears. I can’t believe the strength of my two year old. I don’t think that it has ever occurred to her that not trying is an option, and she has to fight so hard for each small thing. It blows my mind how much she and I live in such a different world than a lot of the other mommies and children. I try very hard to try and maintain a typical life, but why? Because a typical life is better? This forces me to wrestle with so many issues. I struggle from feeling isolated from the world that we live in. When I stop and take inventory I do feel that the world that Claire and I live in is much richer and I wouldn’t want to be anywhere else. I guess that like anything else balancing between two things is harder than the comfort of either extreme. This is something that was just talked about at our church. Perhaps it’s easier to be a liberal or conservative and swing all of the way in one direction. But that is not the example that Jesus set for us. I guess I am doomed to a life of finding balance, but given the circumstances, maybe that isn’t the worst thing.
4 thoughts on “Trying to make sense of it all”
I know EXACTLY how you feel, I think we actually talked about Music Together classes a little at the conference. Girl….I am with you. She loves the music classes and I love that she loves them but at time UGH….just like EVERY experiece our girls go through – it is just different. Be strong.
Colleen,>You got Claire’s messages at music today. You know that, right? And everytime they tell us something and we let them know we got the message, we are affirming their abilities. You are such a great mom and Claire is a blessed little girl. Yes, our girls’ lives are different and difficult. But they also have very good lives. I know I am much more attentive to Lauren and her needs than I might have been if she didn’t have Rett. And we all agree we couldn’t love our girls more. yes, hard…different…but still a very good life. I want to get Lauren a “Life is Good” tee-shirt. I feel like it makes such a statement about her, our life, and how we choose to be optimistic. God is good. He chose us to parent these sweet girls and I am so glad I have the privilege. Hang in there. Claire is going to do amazing things because she has you! I’m praying for you all! : )
Shelly, Thank you so much. I have a Life Is Good sweater and I love wearing it when we go to see the doctor that tell us how hard Claire’s life is. I strongly advice that you get the shirt 🙂
It’s good to hear all this because as someone who is standing by I want to know how to best support your family as you navigate life with the amazing Claire Bear. I love her, and want to affirm her abilities, like Shelley is saying…and you are doing a fantastic mommy job, Colleen!!