Happy Tuesday to you all.  Yesterday I had a unique experience.  For the first time as a mother - I went to a playground without Cody.  He was in school so I took Casey all by himself.  I've always taken them both together - or before Casey was born, I took Cody alone.  It was really strange.  If you're the mom of a special needs child I'm sure you'll identify.  It was literally the first time I've ever been to a playground that I didn't drive away in tears.  Not sobbing tears or "falling apart" tears, mind you.  I just usually feel my eyes well up as I drive off - finally able to release the "feelings" I hid in front of the other moms while we were there.

But yesterday, I was at thet park with my healthy 1 year old and we played.  He walked around and watched the other kids.  All the other parents oooh and ahhhhh'd over how cute and little Casey was.  He picked up pine cones, slid down slides, discovered the grass.  The whole time I was on red alert - conditioned to be so from my days with Cody.  I couldn't stop worrying, "what's he picking up?"  "is he eating that?"  "is he going to fall?"  "are people staring at him?"  But each time I felt myself going "there" I remembered....this is NOT Cody.  Casey is healthy.  He's not trying to eat anything!  He won't have a seizure.  ENJOY this.  Don't panic. 

It was weird.  Very weird.  Weird good, and weird bad.  I even tear up as I write this - because those playgrounds are places of raw emotion for me.  With Cody, they were/are always reminders of what we don't have.  He can't climb on things like other kids.  I have to stay inches away in case he falls, has a seizure, eats a rock.  He usually hates the sun, hates the wind, hates having to hold my hand....so he makes those gutteral "EEEEEEEEEEEEEEEEEEEEEEEEEEEE" noises and everyone looks.  Then I get the weird stares, the sympathetic stares, and the comments from the kids like "what's WRONG with him?"  "He's perfect" I say (and if their mom isn't looking) I say, "what's wrong with you?"  I don't usually fire back like that, but there's the occasional child who wrinkles up his nose as if Cody has the plague and as he steps away from Cody in horror and says "ewwww - why is he screaming and why does he still have a binky?" I can't resist laying it on the line.  So sue me.

Then Cody does his drunken sailor walk over to the swings and screams "UUUUUUUUHHHHHHHHHH EEEEEEEEEEE YAAAAAAAAAAAA" and grabs at the swing and shakes it until he's put in.  But it's a baby swing - the one that looks like a big huge diaper - so his skinny legs nearly scrape the ground as he swings.  He usually get his big feet stuck going in and out of the swing so I struggle to try to get him unhooked as he screams at the top of his lungs.  Then I ask a mom on the bench who's just sitting there staring at us, "can you give me a hand?"

I probably sound bitter.  Maybe I am.  I just can't IMAGINE seeing a mom struggling to get her child out of the swing and not jumping to my feet to help.  But you'd be shocked at how many moms look in the opposite direction when Cody is around.  Not out of politeness - it's more that they sense he's "strange" or "different" and they just don't want to deal with it.  I'm not one of those parents on some crusade to make people aware of how to treat my kid.  Far from it.  But occasionally, it does get to me.  People with disabilities often create an uncomfortable prodding of the soul.  For those who are in their presence - it is sometimes easier to look away or pretend they don't exist.  Otherwise, we feel guilty, or convicted, or whatever.  It's way more preferable to think happy thoughts and look at happy things.  Hey, I feel the same way when I see those infomercials for starving kids in Africa.  Click the remote control.  "Glad that went away!"  "Don't want to be feeling THAT!"  Whatever "that" is. 

So here I was with Casey yesterday - and I was (to the other parents) just another mom with a normal beautiful healthy baby.  I wasn't used to that.  I decided to focus on Casey instead of what I was "feeling" and we had a grand old time.  He picked up sticks, rocks, pine cones...didn't put even one of them in his mouth!  He walked and walked and walked - stared at other kids - pointed (his new fascination - pointing to things and having me say "tree" "baby" "slide" and label whatever he points at.) 

So there you go.  I'm growing.  I'm maturing.  For the first time as a mom, I left a playground without crying.  This may be hard to understand - but the crying part isn't some sign that I'm "broken" or that I need anti-depressants.  It's simply what happens.  I doubt it will ever go away.  As Cody grows it will probably be some other arena where I tear up - maybe at Casey's sports events - knowing Cody will never participate.  I've learned not to freak out when the tears come.  In a way, I guess I've just resigned myself to them.  And they are okay - even healthy maybe.  I wish I could get "past" the tears, but I'm not sure that's part of this journey.  I think my journey is more about learning how to live (and try to live joyfully) WITH the tears.

Thank you Lord for giving me one healthy child so I can experience all the fun parts of being a mom - like playground visits.  Is it weird that I felt guilty enjoying myself with Casey?  I suppose I could go to years of counseling to figure out why and fix it.  I'll just chalk it up to one of the consequences of having a disabled child - you feel guilty ever enjoying anything - because you know your child is hurting.  "How can I have fun?  How can I feel carefree?  Poor Cody is having seizures all day!"  Quite a mind-warp.  Yet, I'm sure, it's completely "normal" for us special needs parents.  But this is Casey's childhood too and I am trying to make such a conscious effort not to rob him (or me) of all there is to enjoy.  I have to force myself to have fun - to laugh - to enjoy life with Casey because we both deserve it.  But I admit, it doesn't come naturally.  What is "natural" is to have rolling in the back of my mind at all times "how is Cody?"  "Is he okay at school?"  "Should I be researching something to help him?"  "Did I give him his meds yet?"  "Did I return that Dr's phone call?"  "should I be using this time to pay the bills?"  Those thoughts rob my moments with Casey if I let them. 

It's a hard balance to strike.  But I'm trying. 

Cody's seizures have been a bit better lately - not sure why.  He's having many smaller ones, but in the last 11 days, only 1 huge one.  Typically he averages about 8-12 "huge" seizure days a month.  We added clobazam back in the mix - perhaps that's providing some extra support.  Down side is it makes him voracious - he must have food to snack on all day - which isn't easy given the elimination diet he's on.  It also makes it tough to sleep - last night he was up till 11pm. 

He's doing fine on the supplement protocol - no side effects I can see from the diflucan as we rid his body of yeast.  I've been giving him activated charcoal every day to help detox which could be why he's handling it all so well. 

That's it for now - love to you all!

Shawna