I spent this mother's day morning watching Cody have a 2 1/2 minute seizure, then pass out afterward.  I don't write that for pity - if you know us at all - you know this is a daily part of our lives.  And you know that we are too busy managing this illness to stop and feel sorry for ourselves.  I guess I write about the seizure - because it is a poignant way to start mother's day.  It makes me think of all the other moms out there who started their day the exact same way.  All of us moms who hear the screams, see the shaking, watch the lips turn blue, see our salty tears drip off our faces - not even realizing we were crying.  We hold them through it, pray for it to stop, carry their lifeless bodies to the nearest chair so we can usher them into recovery.  We watch as they slip into sleep for the 20 minutes or the hour they require to recover from a big seizure.  And we stare at their faces which, always look so 'normal' when they sleep.  It's these moms I think of today on mother's day.  The moms who, once the child awakens, will feed them breakfast - give them a bath - then put on her own make up and find an outfit that isn't too covered in drool.  A shower?  Ha.  Not going to happen.  We buckle them into car seats and head off to church - or wherever.  And people see us, and say 'hey how are you?'  They don't know how our day started.  Sometimes our own husbands don't even know.  And that's okay.  We know.  We don't need to advertise.  We simply smile back and say "fine, thanks....how are you?"  We're not being trite - or self-pitying.  We're just surviving.  We're living WITH the disease - not buckling under from the weight of it.  I will spend my whole day managing seizures, dosing medicine, trying to get him to eat so he doesn't go on a feeding tube.  I will spend my day sucking down coffee because I was up all night with Cody. 

I will try to find snippets of meaningful moments with Casey because his baby-hood is gone and his toddler-hood has arrived and I don't want those precious moments with him to be a casualty of Cody's illness. 

And thanks to Cody's illness and mental delay, I will be bitten, chewed on, smacked, and my hair will be pulled.  I will have his food thrown at me, I'll wipe it off the floor.  I'll get climbed on, spit on, drooled on, hugged.  I'll work all day to help him sign 'eat' 'swing' 'more.'  I'll wait until 6pm to take him outside on a walk because he can't tolerate sunlight.  And as I walk, I'll see other families playing outside - kids running - healthy kids.  And I'll know I have 'that' choice before me.  It's the choice I have every day, hundreds of times a day.  Will I let the tears that are welling up in my eyes - break free and drip down my face as I walk him around the block?  Or will I wipe them away and instead.....choose to remember what I have to be grateful for. 

Some days I choose the tears - and that's okay.  Some days the tears come at the grocery store, the park, the mall.  That's fine and sometimes needed.

But other days (which are winning out in number) I choose gratitude.  I push Cody along and remember that he probably shouldn't be alive - but he is.  He wasn't 'supposed' to walk, but he does.  They 'say' he'll never speak - but I believe he will.  And once I'm done thinking of how lucky we are for his physical accomplishments...I shift to remember how lucky we are for HIM.  How many other mothers got to start their day with such clarity about life?  How many other mothers got to begin their mother's day with such a keen understanding of what being a mother is?  How many other mothers got to know - with such depth - the intimacy with God that is bred from simply being thankful that your son is breathing in and out.  I got to start my day thanking God for Cody's very breath.  Thanking Him for one more day with my son.  Knowing that no second of my day will be wasted on things that don't matter.  That is my mother's day present - Heaven sent in a package named Cody Graves.

And I am one of millions of moms who endure the same pain.  Moms who make a choice daily - moment by moment - to choose to press on.  They choose to be grateful instead of bitter.  They are invisible heroes whose angel-wings are tucked under diaper bag back-packs.  The diaper bags carry diastat.  They carry size 6 diapers and tape because their child has grown too large for the largest diaper they make.  Their diaper bags carry 6 month passes to Children's hospital...lists of things to do...and on a good day a tube of lipstick to try to add a little color to a face that is pale from worry, lack of sleep, and stress.  I salute you - moms.  I can't imagine better company to be in. 

And I salute your other children - the ones without 'special needs.'  Because I know - as you do - that it is a guilt-ridden, endless battle to buffer them from how crazy life can be with a sick sibling.  We try to steal moments with the 'healthy' children.  We celebrate every step they take, every word they speak because we know how it feels to have a child who can't do those things.  We try to help them not to be scared during a seizure.  When Cody begins to seize - I call Casey over and say 'Casey - we need your special touch.'  He drops what he's doing and comes toward Cody with his hand outstretched - and pats his brother on the back - reaches his head down and finds Cody's eyes and looks into them.  Then he squinches his eyes closed knowing that Cody needs a prayer - so I begin 'Dear Jesus...please make this seizure stop.  Amen.'  Casey's eyes open and he smiles at me and I say 'great job, buddy!'  And he trots off to continue playing.  Right or wrong, it's my attempt to make Casey feel included rather than excluded during these seizure moments.  It's my way to empower him rather than watch him shrink into a corner and cry because he's scared of them.  It's what we moms do.  We try to make everything okay for everyone - and everyone relies on us to do so.  And that's okay because we do it with fluidity - seamlessly - like breathing.  That's the gift of being a mom.  People rely on you and you rise to the occasion a million times a day.  That's our job and we love it.  And I get so much in return.  Casey already has more compassion than I ever imagined a pint-sized toddler could contain.  Casey and I steal moments together - amidst the madness - that I will never forget.  He and have both found a hundred ways to have fun when we're couped up in the house because of a 'bad seizure day.'  We've made forts out of playpens...we've created hundreds of art projects...we pray together, we sing together, we dance together. 

I pray that he will grow up also learning the gift of gratitude - and the reality that even with a sick brother - life can be filled with joy. 

This mother's day I am grateful for my kids, my husband, and for all of you other mothers who do this too.  I give you a cyber high-5.  A computer hug.  And you have my greatest esteem.  If I don't see you this side of Heaven, I will be waiting on the other side one day - waiting to meet your amazing kids - and waiting to look in your eyes and say 'well done.'

Till then, got diapers to change and breakfast to make!  Gotta run!

:)

 love,

Shawna