There is a very handsome curly-headed little boy who occupies more space than his parents taking up residence in my bed these days. I often wake up shivering as his hot natured little self has kicked all the covers off leaving his poor mom out in the cold. It’s only then that I realize I am sleeping on only inches of bed and sans pillow. Yet, I wouldn’t trade a moment of it. The smell of his hair, the way he rolls over and lops his arm over me, the sweet snuggles he gives. Every night, he fills my heart with hope and love.
We have made big strides in Braden’s eating, and that fills us all with joy. We think it’s largely due to his medication suppressing his acid reflux. He’s gaining weight, and we are thankful for every stride we make in this department. Sometimes, you win some.
Sometimes you lose some. The past few weeks, we’ve watched Braden stumble, become more ataxic, and fall down more frequently. His mobility is getting worse. He complains about his legs, and even refuses to walk when he’s tired. His ability to pinch grip is decreasing. My heart breaks with every loss, no matter how small.
Our lives are being painted with moments of beauty and moments of pain. It’s the small every day things that fuel the hurt. Explaining to new people that drool happens in this house, and it’s NOT funny or something they need to point out and say “gross.” It’s the sadness in watching my son attempt to get in our SUV, and having to pull a back twisting gymnastics maneuver to get him settled in. It’s watching him try in vain to use silverware, only to resort to grasping and fisting his food. It’s our normal, but it’s not society’s normal. We operate and live in it, and are constantly trying to make our normal acceptable to the outside world. That’s our task as our miracle’s parents.
Thank you to each and every one of you who has hugged us, supported us, and encouraged us, and made us feel normal and accepted. We appreciate all that you do.