There is a special bond between these two. They've shared stories and nap times. Michael has been to many, many of Aaron's appointments and therapies. He knows when and how to turn the oxygen up and down. And he knows how to read a pulse/ox machine! What an amazing helper.
Yesterday, we had a fun photo shoot at our home. There's a photographer up in Idaho who is making it her mission to show the world how wonderful people with special needs can be. She came down and we had a few kids from the neighborhood as well as a couple from a facebook page over here. It was great to be able to visit briefly with them and I can't wait to see her pictures of Aaron. I'll post a link when they come up on her blog. I love to see the light of Christ shining through the eyes in her pictures.
I've been playing with some different configurations for all of Aaron's equipment that we have to have with us to keep him safe. I mean, there's the obvious ones: ventilator, oxygen, and suction. But there's also all the things we have to have if something goes wrong, like an ambu-bag, extra trachs, g-tube supplies, and all of that. I got a new bag this week that will hopefully hold everything from his "go bag" and also the "normal" baby supplies, like diapers and burp cloths.
I wanted to personalize it for Aaron and found this great design put together by another T18 mommy friend. I felt like it epitomized all I wanted to say in one word: HOPE. Inside the ribbon are sayings that so many have felt like represented our kids, and frankly, I think all kids, regardless of the number of chromosomes they have.
I am a miracle. I love. I breathe. I look. I hug. I listen. I laugh. I am a gift. I am worth it. I fight. I kiss. I play. I can. I am. I am a person. I am beautiful. I am not a mistake. I am loved. I deserve. I see. I am a gift. I hope. I cry. I learn. I am real. I celebrate. I sleep. I interact. I dance. I have meaning. I overcome. I grow. I have purpose. I am precious. I try. I think. I feel. I learn. I smile. I am wonderfully made. I LIVE.Because Aaron does live. And he does have quality of life. He makes everyone around him feel good about themselves. And shouldn't that be the best way to live?