Head above water..

It's been awhile.  A lot has happened since our good news.  With the joy we felt from that good news, we had some very unsupportive people.   Sadly, as much as I loved them they had to be cut from our lives.  I have been holding my breathe since Connor's first seizure and I don't need any added headaches.  I learn daily how precious life is and I just won't tolerate anyone dragging me down.  I sometimes do a good enough job of that on my own.  So, where are we?  What is going on?

Chiari I of course, is still a concern and always will be.  Connor still has seizures and breath holding spells.  He still has his twitches and ticks.  But now we have Autism/sensory back on the table.  This is kind of something I felt all along but with the Chiari diagnosis and not knowing much about Chiari at first I thought maybe that was the only issue.   Life with Connor is challenging.  He has some good days, but a lot of bad.  He can go from calm to ferocious within seconds.    Every trip out of this house is planned to a T.  That is just life.  Sometimes I feel like I am Connor's personal punching bag, I am often covered in bruises and bite marks.  Luckily, Connor has started OT and we are learning ways to help calm and sooth him.   Luke and Everley are doing pretty good though.  Luke is getting ready for first grade (after the much anticipated summer off) and Everley is in the "into everything" stage. 

As for everyting else in life, it falls to the wayside.  School, I'm struggling...social life?  What's that?  Chris and I are doing our best to find time for ourselves but date time is rare.  We do give eachother each a day off on the weekends... Chris goes fishing one day usually and I get to sleep until 10 or so the other... (not really a day off, but it's something) .  For the most part I feel very isolated.   Having three children can be tricky as it is, but when you add in one with special needs people seem to run from you.  Or do they?  Lately I have felt like no one is there for us but today I am wondering, is it me?  I have just started completely backing away from everyone.  It's so much easier to just not go anywhere than it is to attempt an outing and make a scene.  I feel as if there is no road map for this.  You can read all the articles about Chiari or Autism or anything for that matter, but you will never know how it affects YOU or YOUR CHILD.  Everyone is different and you can't compare.  When you start compare you realize how you come up short.   It's really exhausting.  I feel like the champion of the day if we make it through without Connor hurting himself or his brother or sister.  If I end the day with a bloody nose or a black eye, it is still a victory as long as no one else was hurt.   Don't get me wrong, not every day is like this, but most are.   My love for these kids grows stronger every day as does my desire to make their lives fantastic.  I go to school, I work, I have my cupcake business (though small right now) and I just keep moving...

“We love our superheroes because they refuse to give up on us. We can analyze them out of existence, kill them, ban them, mock them, and still they return, patiently reminding us of who we are and what we wish we could be.”