the fear

I have a almost 5 year old with SPD (sensory processing disorder), it affects her ability to tolerate different sensory inputs. Things such as wearing pants, socks, long sleeves, brushing hair, brushing teeth, and on and on..The biggest issue we have with her is sleep, on a good night she sleeps 6-8 hours. but on a bad night she only sleeps 4-6. Now this can go two ways, she falls asleep around 8pm and wakes up at 2am and is up all night. The other option is her falling asleep around 5pm and sleeping for a few hours and then being up until 4am  Either of these situations suck and we FEAR them happening everyday. This FEAR comes from hundreds of sleepless nights in the past 4 years. You might think I'm exaggerating but sadly I'm not, for 3 years I could count the number of nights I actually had uninterrupted sleep on 1 hand. Thankfully now it's closer to 50 nights. But because of the loss of sleep and possibility of lost sleep always hanging over our heads I have the fear! Okay here is the other thing, I love my husband but he has lost little sleep because of our daughter. I have taken one for the team as far as sleep goes in our family. He is a great support to me and patient when I get a little crazy from lack of sleep.So last week was Valentine's Day and our church was hosting a drop your kids off and go on a date night. Great idea right, not for us and I had to explain to multiple people why we would not participate. Trying to explain THE FEAR to someone who hasn't had a child with a sleep disorder is a lost cause. Why wouldn't we want a break you might wonder? We need a break that's for sure, but at what cost? We try  to NEVER take our kids out after 5pm unless it's an emergency. Again this may seem extreme to some people and downright ridiculous to other. Anyways trying to explain this multiple times this week has left me frustrated and just pissed off at people for making me feel like a crappy wife for not making the most of a free babysitter! Hello I have 3 teenage daughters and free babysitting whenever I feel the need without dragging my little one's out. Consider rant over now!