It is 3:45 am according to my ancient clock radio. My youngest daughter drags my right hand to pull me out of bed. She leads me to the gate at the top of the stairs indicating she wants to go downstairs. I slide on my eyeglasses to see as we try to sneak downstairs to not wake the other members of our family. In the dimly lit living room I struggle to keep my eyes open, to keep her safe and hopefully wear her out to go back to sleep. Without an eye on the time, eventually she stretches out on the couch. I try to get comfortable in the chair near her. Just as soon as I rest my eyes I hear my husband moving upstairs in our room. I check the clock, with a heavy sigh I realize he is up for work. The day begins with me in slow motion.
Shortly after he comes down the stairs, our oldest bounds down wide awake. After he leaves, my youngest is still awake. I realize that I need to do something desperate for her to sleep before our morning activities. Despite my exhausted self, I pack up my girls in the car in hopes a long drive will help make her nap. In three hours we are expected at a medal ceremony at the local library for the Summer Reading Club. My oldest has been looking forward to this all year. There is no way I am going to miss that for her. If I wasn’t so tired I would be angry at the situation. In a ‘regular world’ there would be a grandma on call to do this so I could cat nap. Autism robs my brain and energy again.
I know I have a lot to be grateful for: healthy family albeit autism, my sister lives close and I have a writing career I love. The ‘experts’ keep going on and on about the importance of sleep. Well, that is great and all, but what happens if it is beyond your control.
Within minutes of our drive, my oldest girl tells me her sister is asleep. I tuck the car into a drive-thru line-up. In the rear-view mirror I see my five-year-old’s eyes light up. I order our food and park under the shade of a tree. I leave music on and begin to have a breakfast car picnic with my first baby. She states that this is the best fun ever. With those precious words I slip out of my self-pity baggage. I did what I could do and ended up making a special summer memory for the two of us.