The pattern continues - Ben goes to sleep easily between 8 and 9pm, then something unexplainable happens and sleep alludes him. It usually lasts a few nights. This time it was 6 nights. These photos are from this period. After doctor prescribed pills and melatonin, he finally sleeps, but not until 11pm or so. During his waking hours, Ben is raring to go. We try to wear him out with everything from church to shopping to parks. Nothing works. He takes our hands and leads us to the car. Ben sits in the car in hopes that we may go somewhere else. I let him sit there if only to give me a moment's peace. If someone stops by, he tries to lead us to their car. It's like he's saying, "Please, take me out. Anywhere. Just someplace." Tonight he has finally crashed. I never thought whining and crying would be music to my ears and offer relief, but this is his sign that pure exhaustion has set in. Right now, he is curled under the covers in his bed watching good 'ole
These stories describe our journey with Ben, our oldest son. Ben is a sweet and energetic redhead, born with Rett Syndrome, a rare genetic mutation. My husband, Ryan, and I try to keep up with Ben and his two younger brothers. I intend to shed insight into raising a child with disabilities and pass on the wisdom we’ve earned over the past two decades.