WHAT A BEAUTIFUL DAY TODAY!  The sun is shining so brightly I'm afraid it will cut through the glass windows as it beams into our living room!  I woke up this morning after not much sleep - to Cody and Shoshannah (our overnight respite helper) in our living room.  She and I looked at each other and yawned.  6am.  Yuck.  Cody got up at 5:30 but had whimpered and cried thru the night.  I was up much of the night with Casey who is cutting a tooth.  Cody was doing his obsessive compulsive maneuvers only this morning it wasn't to get in the car, it was to hear a noise in his ear.  He screeches and points to your mouth until you lean over and make a "prrrrrrrrrrrrrrrrrrrr" sound or the like in his ear.  I have no idea why he's so OCD the last few months.  Probably some side effect of the crappy medicines he's on.

As Shosh and I yawned several times at each other, I loudly declared "Starbucks Run!"  We piled both boys in the car and took off.  The sun was shining, we had lattes in hand, and I drove her along the Kirkland waterfront which she'd never seen before.  We wound our way back to Juanita bay and saw the sunny playground and gorgeous waterfront.  We laughed - made jokes - handed Cody bites of a breakfast sandwhich in the back seat.  We got home and I put Casey down for a nap and she took off with Cody to Fred Meyer cuz I'm out of baby formula.  And I sit here - feeling blessed.  The odd part of having a sick child -- that I never would have expected -- is that the small things mean so much to me.  A drive in the sun.  Cody smiling in the back seat with his crooked binkey teeth.  Casey holding my hand as he falls asleep.  The taste of fresh coffee at 6am!  And a good friend who masquerades as our nanny to share the crazy morning with.  It could have been such a grumpy morning - no sleep - kids screaming - Cody being weird - a long day ahead of me with no school today.  Bills unpaid.  Dishes undone.  House a mess.  But one gift that Cody's illness has given me is to truly appreciate and look for the good - to find what's good in the haze of nuttiness.  He'll probably have a seizure while they're at the store - he did last time.  Casey will wake up any minute.  But for this moment I soak in the sun and the fact that I have so much to be grateful for.  I had money for the Starbucks run.  I have a car with a full tank of gas.  I have car insurance.  I have a home to drive back to.  I have help.  I am healthy.  We have a daddy hard at work to provide this life for us.  I know that if life weren't as difficult as it is - I'd take all these things for granted. 

I've gotten 2 emails from moms whose kids have i.s. --- they found this site and took time to write to me.  I'm so grateful for that connection to other moms and dads who are facing this illness.  I wish my own life weren't so hectic - one of the moms lives right by me!  I wish I could get in my car and show up at her house with dinner for a week -- and tons of hugs for her.  She is just embarking on this journey that I've been on for 3 years.  Oh if I had the time, I'd make it a full time ministry just reaching out to those who have babies with seizures.  I can't imagine a more worthy bunch.  I'd rub their back, watch their kids so they can go for a walk....I'd listen to their fears...I'd check in with them every few days so they know they are not alone.  Mostly I'd pray for them.  I do feel I have a lot to offer to those who are just beginning the road of infantile spasms - but I am confined to this house most of the time and usually running too ragged to even take a phone call.  Someday, though....I pray for the opportunity to be a healing balm in their hard lives.  For now, we keep in loose touch over the internet - and that has to be enough.  Some of the moms who I have met online have become dear friends!  Sue, Kelly.....Valerie...Debbie....all of us connected by seizures.  A sorority we never wanted to join.  These are some of the richest friendships I will ever have.  We lift each other up on the worst days.  We swap the latest treatments.  We pray each other through brain surgeries.  And just today two more friends made by moms reaching out and emailing me.  Although I probably won't meet many of these women in person - I feel as though we are sisters - connected by the same pain - a child who is suffering. 

Again, I am blessed.  I am in the constant company of heroes.  Mommy-heroes.  And their children who are the bravest souls on the planet.  I am honored.  My heart is full.

Thank you, Lord - for this day.

Shawna