Did you do that paperwork today?

" Hey Julie have you filled out that paperwork yet?"   No, not yet child.  This is why.  I am going to run through my typical day.  Having caught an article recently that stated most people have approximately 5 hours of leisure time a day, I just didn't see how that was possible when you are the Mom of a disabled child.

So here goes.  Ready set go.  Starts at 4am when Daniel typically wakes up laughing.  I go to his room, change his diaper, and settle him down.  Back to bed if I'm lucky.  If not, then coffee is on.  Take the dog out for his morning business.  Help Thomas get his breakfast and get onto the Middle school bus at 6:30am.
Come back inside and feed the dog.  Unplug Daniel's feeding pump from his belly and set up a fresh bag for the day.  Get his morning medications ground and dissolved, give a breathing treatment if needed, give medications through the g tube, also known as the Mickey Button.  Cute.  Get Daniel changed again because he goes alot in the morning, then get him dressed for school.  Lift him into the wheelchair.  Buckle, snap, and velcro him into the chair that holds him into safe positioning.  Get the tray and put it on the wheelchair.  Make sure the back pack has his AFO's, immobilizers, and hand splints.  Brush his teeth carefully, wash his face, and then its off to the bus at 7:30am.  Bring Henry also to the bus.  Bus aide gives Henry treats, that's a thing we do.

After Daniel is safely ready and launched, its back into the house I go.  Clean up dishes in sink. Throw a load of stinky Daniel laundry into the washer.  Scoop the cat box and feed the cats too.  Go upstairs and shower, make sure I have something that looks half way decent to wear.  Hair gets blown out and styled sometimes. My face is lucky if I put on makeup.   Go through bills to make sure I didn't miss anything.  It happens.  Write down phone messages from yesterday with the intention of calling back later, but never get to it.

Usually I have to then drive to Newtown Middle School and drop off the Baritone Sax.  Get over to AllState in Monroe and do my best to work until approximately 3pm.  This is on a normal day.  If it were one of Daniel's MANY doctors visits or hospital clinics, I don't make it to work.  For the purposes of this blog post, I was able to work at AllState for several hours.

Leave Monroe at 3:00pm.  Get to Newtown Middle School to pick Thomas up after Jazz band ends.  Get Thomas home so that he can get started on homework.  Walk the dog.  Run a vaccuum to get up the cat hair.  Have a conversation with the nurse about how Daniel's day was.  Review his medications to make sure that something doesn't need to be reviewed.  Plan something, anything for dinner, and on a good day actually prepare it.  Or go with deli sandwiches, whatever.   More laundry.  Feed the kids.  Clean up. Do motherly housework until 5 ish.  Feed the cats, feed the dog, and take the dog for a walk.

Then somewhere about 6:30pm Daniel's night time regimen begins.  Lets assume I have no helper, because that happens.  So then I carry Daniel into the shower, and bath him (his lift motor is broken) and get him all clean and ready for bed.  Get the nighttime meds ready, breathing treament and vest treatment, and get the pump set for night feeding.  Daniel gets g tube fed around the clock at a slow rate.  Settle Daniel into bed.  Go into the kitchen and make formula, just like you did for babies.  Boil water, and mix the Neocate Jr. to make a supply for the next day.  Put on a favorite movie of his, or just something sensory like the lava lamp or the puppy that makes stars on the ceiling.

This is about the point in my day that I finally stop and sit down in the recliner in Daniel's room.  Maybe check out facebook, or cringe over my budget, or go onto you tube, or write, or just go through email.  Then at about 8:30pm Henry goes out for his last business before bed.  It's upstairs, put Henry in his crate.  Get the monitor on, and by my bedside.  Take my medication.  Snuggle into my bed.  Turn on the lap top, start writing but then experience the exhaustion swallow me up.  That's usually approximately 10pm.

When did I have 5 hours of leisure time in there?   I have an application that I have needed to get filled out and mailed.  I read an email asking me to fill it out and send it.  I had every intention under the moon to do that, but finding any time to work on this.  "Fill out that application and send it in."  I will.  I will figure out how to work it in.  At 4am when Daniel jolts me out of sleep, I'll try to do it then.

I often get to the end of my day and realize that, crap, I didn't fill out a form, call a medical supplier, schedule an appointment with a doctor, pay a bill.  And my feet hurt, and I'm tired.  I'm sleep deprived.  And the cycle begins again.  Sometimes with different places to be and things to get done, but never stopping or slowing down and never doing anything to bring personal pleasure to me.  Usually.

It's a whirl wind.  Much like when you have a newborn precious baby.  But bigger, much bigger diapers.

The application I have to fill out is going to have be on the tomorrow list.  If I can stay awake long enough to write one.