Helpless

Tonight, after Jeremy gave AJ a bath and he was snuggled in his bed, I went in his room to kiss him goodnight.

It was then that I recognized that stare.  The seizure stare.  I waited, and saw the drool.  I dropped to the floor and watched my little boy stare into space and held his hand.  This one was about a minute.  A minute that felt like an eternity.  I sat and cried silent tears while I watched my little boy seize.  I watched him intensely waiting for my little boy to come back.  And he did.  With a big smile and a hug.  Thank God.

Tonight is one of those nights that I feel so helpless.  We do everything we can for AJ, but this is one area we simply cannot do anything for.

No mother should ever have to watch their child suffer-in any way shape or form.  Watching my child seize is torture to me.  Pure torture.  I try my best to be strong for him and comfort him.  Even if he's still, I want him to know I'm there.  His seizure activity has been off and on recently.  I really hope it goes off for a while.  

I still don't understand why AJ's epilepsy is the hardest thing for me to handle.  Of all the things he has going on, I can't get over the epilepsy.  I worry about more brain damage.  Sometimes, I even get scared that some day the seizures will be uncontrollable and will take him from us.  Tomorrow, I will call his neurologist's office.  To which the nurse will talk to me for a ridiculously long amount of time and talk me through everything epilepsy.  It will probably lead to another visit, a blood draw, and maybe another EEG.  All of which I hate.  Perhaps it won't.  She'll remind me that breakthrough seizures do happen.  They are controlled most of the time, but sometimes one slips through.  Was he drowsy?  Yes.  Then you know the most common time for seizures is drowsiness and during sleep.  Yes, yes I know. Is he growing?  Yes, like a weed.  Well, then?....  I know, I know.  

I'll be checking on him a lot tonight and am already anxious for his amazing morning smile.

Special Needs Family Support Group

A few months ago I had ants in my pants about the fact that there aren't any special needs support groups in our area.  After speaking to a few different contacts in the special needs world I learned that most groups fizzled out a few years ago.  Lovely.  I was done searching and moved on to "Well, I start one then.  So there!"

So, I contacted a friend at church and asked if we could start a group there.  This is one of those moments where the stars aligned just perfectly.  She told me another church member and her husband were just organizing and planning such a group.

We've been meeting for a few months now and its been absolutely wonderful.  We've met some awesome people and formed some great friendships.  It is the most amazing feeling when I say a phrase or acronym and do not have to explain it.  To have another parent understand how a special needs bad day is different than just a bad day.  To vent and have someone actually get it. We laugh, we cry, we support one another.  We share resources.  We opened new doors.

Did I mention how great this is?

Jer and I learned quickly that we're sort of veterans in the special needs world.  While AJ is still young, we've been around the block and then some.  I've said it before, but a little tiny piece of my heart heals each time I am able to use the knowledge we've gained from our experiences with AJ to help someone else.

Hooray!