.a day in the life

Today was a rough day and a hard day.  I shed tears for my little girl and myself today because sometime you just need a good cry.  I thought I’d take the time to share what a day in the life of my little human consists of.

Little human usually wakes up between 3 & 3:30 every morning, ready to have a snack and play.  We have tried EVERYTHING to keep this from happening and nothing works.  So I am just taking it as it comes and get up with her.  She eats her snack of a cheese sandwich or a corn dog or sometimes just cheese crackers and the playing begins.  Some early mornings I can get away with watching Moana on her little TV, but others, like this morning, I get to physically play with her.  This can be anything from making Mickey Mouse talk to doing OT or ST activities.  This morning it was looking and naming shapes, giving 1000 kisses to her new friend Bear (she found a small valentines bear at her Nana’s that has become her new BFF..) and running back and forth between Sophia on her TV and Goldie Bear on our TV.  We also shared an earbud and listened to FGL’s new single Simple, thank goodness she’s a country girl!  She finally started winding down about 5:30, I popped another handful of Advil (I’m still recovering from my surgery a few weeks ago & I’m still in pain most of the time,) and back to bed we went.  Cue 8:00 just before Daddy get’s home, we are up and at ’em again.  She’s gotten to see her Paw Nick, Nana, and Uncle Elijah several times over the past few weeks, so she literally woke up asking for her Paw Nick and Elijah.  She doesn’t understand that she doesn’t get to see everyone every day.  When I told her Paw Nick was at work and Elijah was still asleep at his house, she switched to asking for her Guppy, Pop Pop, and Uncle Koy.  She screams it at me if I try to just ignore her.  So we go through the whole cycle of her asking, me telling her they’re at work or at their own house, her melting down crying, me cuddling, and her asking again.  It goes on ALL DAY LONG.  Even if we get to see one or more of the above, as soon as we get home she starts asking all over again.  It is mentally exhausting.

Once her daddy got home, she played with him for all of .5 seconds, then returned to asking for her Paw Nick and Elijah.  As I’m changing her out of her jammies into clothes and a new pull up (because of her sensory processing disorder, she is still not potty trained.. at 5.. and yes, we work on it constantly) I notice that her shirt is wet.  Awesome. She peed in the bed, again.  So I take her to the bath while husband spot bots her bed for the 3rd time this week.  Once she & her bed are clean, it’s breakfast time.  Not cereal or pop tarts for our little human, nope, she wants a corn dog.  So she get’s the last 2 corn dogs for breakfast (meaning she will be crying later when she wants corn dogs and we are out, fantastic.)  After breakfast it’s time to say goodnight to daddy (he’s working nights) and time to play some more.  So out comes the sorting bin, plethora of toys, and the TV changing between Moana, Wiggles, Bubble Guppies, Sophia, and Goldie Bear begins on the TV.  An hour or so later it’s time to get ready for therapy.  Well, she’s wearing her pretty bell dress and green tutu (because ya know, you need to be a fairy and a princess) and doesn’t want to get dressed in real clothes, meltdown.  I used to be able to easily wrestle her out of her play clothes and into regular clothes, but she has started hitting and kicking when she has her meltdowns or doesn’t want to do something.  So, I let the meltdown pass without getting swatted or kicked, and pull her dress and tutu off only to see that she has, without my seeing her, taking off her pull up and peed in the middle of the floor.  Fanfuckingtastic.  So, 2nd bath of the day and a quick wipe up and Clorox wipe swipe and we are out the door.  Just as we get to the edge of the driveway I realize we’ve forgotten her shoes, reverse.  We make it to therapy just in time.  Today is her short day with just speech so I get a 30 minute reprieve.  I do what other normal parent’s do during this time, I sit in my car and scan Facebook or read one of my books, or check out a new blog posting.  Today it was reading a few chapters in one of my favorite book ‘Coyote Dream.’  It was a VERY short 30 minutes.  Oh goody, she got a BLUE SUCKER for being a big girl in therapy, how wonderful.  I would risk taking it away, but we’ve already had a few meltdowns today and I just can’t handle another one right this second.  Plus, we’re gonna head to the splash pad with a friend so it’ll just wash off anyway.  Back to the house we go.  I double check the site for the splash pad & see that it’ll be closing at 3 for cleaning and maintenance all week, well we can’t meet our friends until after 2, so there goes that fun afternoon.  With a long and unoccupied afternoon looming before me, I decide that we’re gonna go ahead and go to the splash pad ourselves (this is not the “town” splash pad, it’s the one on the military base here in town) – so we get home and I grab our wet bag with our swimsuits/towels/sunscreen in it, change into my shorts & baseball hat, spray myself down with 70spf (because I’m ghostly white), put 2 layers of 75spf on little human (who is till sitting in her car seat screaming for paw nick) and head to base.  This is where I have both the best and worst parts of my day.  A Tahoe full of kids is pulling out just as we pull in, perfect, we will have the whole place to ourselves!  I quickly change her into her swimmies and off we go.  Little human is a water baby, always has been, she LOVES it.  So anytime I can get her to the water then we are guaranteed to have a good time.  I love how she reaches for my hand before she goes running through the fountains and showers of water.  She runs and squeals and say’s “mama play, mama water” over and over as we run together through the splash pad.  We got a precious half hour or so before the others arrived.  2 car loads of little kids, right around her age, pulled up and spilled out with their parents and fans and coolers.  They were clearly there for the day if not the week!  This is where most other parent’s with only children get excited.  Yes!! someone for my child to play with and meet new friends. That IS NOT how it works in the SN world.  For many of us, the moment we see other people, we panic.  Stomach turns to knots and our mouths go dry.  Then we have the decision.. do we wait and see what happens or just go ahead and jump ship.  Well, today my friend, I decided to wait and see what happens.  BIG MISTAKE.  When my spunky and friendly 5 year old should’ve been having the time of her life with kids her own age, she was doing just the opposite.  She has no spacial awareness so she was going up to each kid, getting right in their face, and screaming HI, HI, HI, HI, HI, HI, HI, HI at them until they walked off.  After the 4th kid went and complained to their mom (who btw was kicked back all relaxed with a dr pepper & her book) I decided it was time to go.  So I scooped her up and said “bye bye splash pad” :: CUE MELTDOWN :: I was not about to let these people see this, so I wrestled her in my arms and carried her kicking and crying to the car to dry off.  Have you ever tried to dry off a flailing kid?! It’s like trying to baptize a cat, on the reals.. So, after this wonderful experience, I sit in my car and tearfully text my friend and fellow SN mom.  “Today is a day I wish LH was normal.  We were at the splash pad & 2 car loads of little kids came up.  She should be running around making new friends but instead we have to leave because she was bugging the kids and kept getting in their faces.  I’m literally in tears, why my only baby?” – exact text.  This is one of the many things people don’t understand about SN kids and parents.. It’s not just about the melt downs or the therapy or the specialists appointments.  Its about not being able to JUST BE A KID.  What should’ve been a fun day at the splash pad turned into a miserable experience with the arrival of other people.  I am so incredibly lonely and I imagine she is too, if she even knows what that emotion is.  This life is so isolating and frustrating and sometimes miserable.  Just when we celebrate a success we get knocked down again by a rude woman in a check out line or your child not knowing how to play with other kids.  Not only is it isolating for the child but for the parent too.  I am SO TIRED of having to explain her to other people and parents.  I’m SO TIRED of not being able to go to that birthday party or not being able to stay at a friends house because little human can’t handle it or is melting down or I’m having to chase her from one end of the complex to the other.  Why was I picked for this life?  Why was she?

So, back to our day – I wipe my eyes and dry it up as we head home.  She’s having fun playing with bear and her keys in her car seat, so I take this opportunity to jam out! I roll the windows down and crank up my ‘escape plan’ playlist.  She squeals in delight as Pink and Florida Georgia Line fill my speakers.  Once we get back home it more cheese sandwiches, Sophia, bubble guppies, playing and meltdown’s over Paw Nick, Elijah, Guppy, and Uncle Koy.  She also has started this new thing where she says “uncle koy talks to Fenway” over and over and OVER.  She’ll change the person from Uncle Koy to Bear to Mama to Elijah back to Uncle Koy, but she repeats it OVER AND OVER, and she gets louder and louder each time!  The first 20 times were cute and a success because she did indeed talk to her Uncle Koy a few days ago, so she is remembering things.  By the 2000th time, it’s not so cute anymore, but we keep it up because we don’t want her to regress.  So and afternoon of the same slowly fades to evening and more of the same.  Daddy leaves for work and we eat dinner, get our jammies on, read a story or 10, and turn on Sophia for her to go to sleep.  She say’s “I wuvs you” as I kiss her little face and I melt.  Yes, the day was hard and I had some tough tearful moments, but regardless.. I love this little girl more than I have or ever will love anyone else.  She is the absolute light of my life and I wouldn’t trade her for the world.  Trade her illness/diagnosis, yes & most definitely, but not her.  Aside from the diagnosis, she is the brightest, silliest, most fun, and loving little person you will ever meet in your life.  To know her is to love her.  I know today sucked, tomorrow may suck too, but this is just our life right now.  She may grow out of it or I may grow a tougher skin, no one really knows.  I’ll take the next hour or so to catch a shower, eat something real, and write a bit.  Then it’s off to bed because I know that come 3:30, my day will be starting all over again.

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