Erased

Lily has stopped feeding herself. This is not unusual to work so hard on a skill, to do it a thousand times before her little brain can process it. Then, she learns it. Then, she loses it. And we start the skill over, but sometimes with more memory--and sometimes not.  This is where being a warrior of this disease kicks in. We just have to continue having her use her hand while eating, putting food in her hand, and try to keep this skill a memory somewhere in her brain. It makes you want to scream as she spends hours a day working so hard on a skill and to be filled with such amazement only to have it washed away by seizures, by medications, by tumors.  It's like climbing a mountain and almost reaching the top a hundred times and just when you're about out of oxygen and you're 10 paces from the summit...a wind comes and knocks you 10,000 feet--back to the base. This is where you get back up. You get back up mad and full of fighting fury. You focus on the goal and you push hard. And you do this because you know all is not lost and there is always hope, and because you believe we will reach the summit. So pick up your gear; we're headed back up the mountain.