I know everyone has probably experienced the nights of seeing every hour on the clock.  One night here and there isn’t so bad, but when you go months at a time it’s flat out exhausting. If you see me wondering around looking like a zombie (No I am not part of the zombie obsessed group of people.)…. Please just return me to my home and preferably to my bed. Libby has us pegged. On a typical night she fusses around 4:30 am we get up and give her a pacifier and we all go back to bed.  These nights aren’t too bad.  It’s the nights when we put her to bed around 9:30 -10:30 and she fusses every hour after that. Again we get up give her a pacifier.  She can’t use her hands due to her tone being so bad. Otherwise we would make her get it herself. Then anywhere around 1:00 am to 3:00 am she is awake, eyes wide open. You might think that’s not a big deal… Just let her cry it out is advice we get from everyone…. Well let me tell you that doesn’t work with a kid with Schizencephaly.  Libby will cry and cry and cry.  We enter the room and she can shut it off so quickly.  This is extremely frustrating. Most of the time I will stay up with her and we just hang out. L Sometimes Mike will get up and take her downstairs and they fall asleep in the chair.  She usually falls back to sleep around 5 or 6 am.  Great my alarm just went off at 5:15 to go to work!!  I get asked all the time…. How do you function on such little sleep?  I honestly don’t know how to answer that.  It’s not caffeine, because that makes me sick. I do have 1 cup of Organo Gold Coffee a day and that gets me through the morning and early afternoon.  Once I get off work it’s go time.  There isn’t a break.

A typical day with Libby after I get her picked up from daycare consist of a lot of running around.  With Libby chilling in the back we head off to get Layken from school. Then it’s off to Therapy Monday and Tuesday at our house. Some Wednesdays at our house and now we are adding water therapy some Fridays. So one might think you have Thursday off!!!  Yeah right.  Thursday is MY busy day.  We get home on Thursdays get everyone settled in. Do some dishes and laundry.  Then around 5:00 I start spray tanning until 8:00 at night… Guess what its bed time for the girls and finish anything I need done before I go to bed around 11.  Say my bedtime prayer.. Praying for a full night’s sleep.  Now that school has started we start fall activities for Layken.  So Monday’s after Libby is done with therapy we will get caught up on all homework and reading for Layken fit in dinner and then it’s off to Volley ball practice. By the time we get home you have guessed it… It’s time to start getting ready for bed.  I have amazing friends and family that always say they will help with whatever they can any many of them do.  But the one thing I ask of you is the next time you see me… PLEASE don’t tell me I look tired…. I know I am tired and don’t need a reminder. I didn’t write this for a pity party. I just hope it makes people aware of the struggles of raising kids with special needs. There are people that have it way worse then I do is what I keep telling myself. I have learned compassion for people with struggles unknown to me.