Sunday, March 6, 2011
You know it when she wakes up. From the first minute she hits our bed I can tell what kind of day Myra will bring. We all feel the effects of her difficult days, but Eden usually bears the brunt of Myra's aggressive behaviors. After learning all the family names, Eden's next set words included My-My push and My-My bite.
Today was the hard kind of day. By 4:30pm she was in full form. We took a short bike ride to visit a neighbor friend and Myra was unable to ride safely in the bike cart behind my bike. After reminding her several times to keep her hands to herself I decided to allow her to run home versus continuing to hurt her sister. There we were Myra running, me on the bike, Eden in the bike cart. Myra was screaming, throwing herself on the ground every 30 feet, and giving me her signature mean face. We were about a quarter of a mile from home. I asked every ten feet if she was ready to get back into the bike cart. She continue to choose running. I would then remind her to pick up the pace. "Ready to get back in? No! Pick up the pace then! Get your run on sister!"
A few blocks from home a pregnant woman stopped me and stated that what she was about to say was none of her business. She asked why Myra was running and not in the bike cart. She asked why I was allowing her to throw herself on the ground. She commented that I needed to get better shoes for Myra. I was hot but I tried to keep to cool. I smiled and let her know that it was none of her business. Not the fastest thinking on the block. Next time I think I will say..."I know. I totally agree with you EXCEPT for the part about her shoes (See Kai Run are not bad or cheap). It is terrible and I wish things were different for my sweet daughter. It is hard learning how to live with a disability and it breaks my heart to see her struggle. Running is a great, healthy way for her to learn to regulate. Thank you for caring so much about children."
This marks the first time someone has randomly commented on how Myra and I deal with her limitations. It was hard, sad, frustrating and I'm still trying to get it together. I want things to be easier for Myra. I dream of a different way for her. Both of those things are not to be and we, together, will have to learn how to help her function and reach her full potential.
Dinner tonight was AWESOME. Myra was able to feed herself. She was able to eat all her food. She used an inside voice. She took her bath without screaming. She let me rock her and give her a good night kiss. Running a quarter of a mile while scream is just what she needed today. I think I will repeat tomorrow....maybe she will be able to join the family for evening story, singing and praying time! Let's hope the random lady see us again tomorrow so I can have a do over and let her know how I really feel.