Not My First Rodeo

When I started this blog six years ago, it was as an emotional outlet.  It still is.  I have words in my brain and they must go somewhere.  I was a stay at home mom with a toddler and an eleven year old, pulling my hair out as I navigated Noah's newly diagnosed life with ADHD and Autism.  Drowning in my own depression, I was also homeschooling Noah after a disastrous experience with a private school, knowing I had to put him back in public school.  Life was not on an even keel.

I decided to call my blog 'Living in Left Field,' because the day Noah was diagnosed, they handed us a binder full of information and sent us on our way, "Congratulations!  Your son has autism, see you in three months!"  Shawn and I buckled the kids in the car, then stood in the parking lot just staring at each other (or perhaps into oblivion), shell shocked, even though those were diagnoses we were expecting.  We had also expected more support that day.  Noah was high functioning enough he didn't qualify for any therapies or support.  I'm sorry, what?  Finally, I broke the silence and said, "Shit, they just dumped us in left field."

Six years later, we still live in Left Field.  I don't know that we will ever live on an even keel, but we know how to navigate it a little better, and laugh with most of the punches.

Last week, we rode a similar rodeo.  As you know, we're now navigating the life of seizures with Avery.  Last week I heard, "Yes, your child has seizures.  No, we're not treating them.  See you in six months!"  Shell shocked, I couldn't think of a single question to ask.  I couldn't even think to open my notebook to look at the questions I had written down before in the weeks before.  I just sat there, next to my child, too dumbstruck to speak on his behalf.  I'm sorry, you're not treating my child?  Nope.  Wait and see.  Wait and watch.  I felt dumped right back in Left Field, but as I said above, we've never left, so there's that.

Avery and Ezra were happily playing in the hospital playroom, and actually playing with other kids really well, so I let them be while I gathered up the strength for the drive home.  Sitting there, I started talking with another mom, and learned more from her than I did the doctors.  She held my hand, looked me in my eyes and said, "It's going to be okay.  It won't be easy, but it's going to be okay."  I've said those very words to countless other moms, and I know both of us will continue saying them.

She told me the difference between epilepsy and seizures (the doctor had already said Avery does not have epilepsy, he has seizures), and why they often don't treat seizures, especially in kids like mine (and hers), especially at first.  Avery's seizures are not disrupting his life, or his sleep (that we can tell), nor can any of the tests prove they are happening daily/nightly, or several times a day/night.  Also, these meds are heavy duty, and can contribute to the behaviors and sleep issues Avery is already having, and even cause some of their own problems.  I also learned these types of seizures are often seen in kids diagnosed with autism, ADHD and other similar behavioral issues.  Interesting (okay, but WHY?).

Yes, it still scares the daylights out of me.  But, I understand it a little bit better.  If only doctors explained things as well as other moms do.  

So, we wait and see.  We wait and watch.

We wait and pray.