Happy May Day to you all.  What a busy week it's been.  My usual helper (our dear sweet Veronica) got married recently so I've been on my own a lot the last 2 weeks.  It's amazing how you get spoiled with a little help.  In the face of having both my kids all by myself - every day - all week - I was paralyzed.  Yet it wasn't long ago that was my existence.

This week, the days were loooooong.  Cody didn't go to bed until midnight some nights - only to wake at 6am.  I looked at him on those 6am mornings as he sat up in bed and blew raspberries - and said to him, 'really?  is there SO much going on in your day that you need to start it NOW?'  He doesn't even wait for the end of the sentence, he has climbed over me and trotted to the bedroom door where he's frantically signing 'open'.  I open it up and he stumbles into the living room where he begins his ritual of blowing raspberries in front of the sponge bob pillow, then in front of the blue ball, then he stands in front of the TV set and turns it off and on, off and on, at least 100 times.  Then he does his ritual walk thru the house, laying waste to anything in his path.  Magazine on the counter?  Bam - on the floor.  Glass of water on the table?  Splash - on the floor.  My desk?  Keyboard and mouse get flung across the room.  I run behind him doing damage control cursing myself for not Cody-proofing before I went to bed last night.

It feels so meaningless sometimes at these early hours.  It lays out like a marathon before me...endless hours of raspberries....a sea of self-stimming...spinning in the swing, spinning in the chair, spinning in his pod chair.  And yes - we must begin it at 6am!?  Then, of course, Casey stumbles out of his bedroom by 6:15am saying 'mommy - Cody's noise woke me up.'  He climbs on my lap as I sit there still half-dazed myself.   Then begins - 'I want a video'  'I want breakfast'  'I need my diaper changed.'  'Make Cody stop the raspberries.'  'not THAT kind of yogurt!'  'not BUTTER on my toast, JAM!!!' 

By 7am I am a haggard mess - counting the minutes until bedtime. 

But there's a turning point after I've had my coffee...and both kids are fed and in fresh diapers...Casey is perched watching Sesame Street and Cody is spinning himself on his tire swing.  I have picked up all the messes, cleaned up Cody's tube-feeding supplies, and I sit down on our upper floor and look down at both my kids in the living room.  I ask Casey how he's doing and I hear, 'GREAT!'  Cody seems content for at least a second or two.  And I breathe deeply, sip the caffeine, breathe deep again, put on some praise music - and I stand up and close my eyes - and spread out my arms and do a few spins myself.  I look up past the ceiling - through the clouds - and I say 'give me strength for this day, Lord!  I have no idea what's in front of me.  But I know You've entrusted these two little lives to me and I don't want to be a frantic, grumpy mom.  I want to enjoy them.  I want to enjoy You.  Get me beyond 'me' and help me embrace this day - the good and the bad - and give me eyes to see all that there is to be grateful for.'

That's the extent of my daily devotional.  I wish I had time to devour my Bible, listen to a sermon, or dig into some new theoloical topic.  But that's not going to happen.  Truth is, right now, that is my 'quiet time' and it is....what it is.  And I firmly believe that's okay with God - right now.  He meets me there.  And shockingly, I DO get strength for the day - every time I ask.  There hasn't been a day I haven't made it through yet!   I get so many emails from people who have just gotten then news that their child has infantile spasms or mito disease and I KNOW that feeling.  I smell it in their emails.  Those days when you just cry non-stop and wander around thinking you're going to die.  And those days lasted (for me) about 3 years.  But there is a turn...just like the turn in my day I described above.   There's a turn when the intensity subsides just a bit - and the pain dies down just a smidge - and you can look up and take a breath.  Then one more.  And (even though it doesn't seem like it in the beginning) you CAN find so much to be grateful for and you CAN find the victory within - and through - this diagnosis.  I promise. 

Oh, it's never the life you really would have wanted.  That is just a fact.  But it is the life you got, and the life your child got, and the life your family got.  So just wade through the pain, the crushing, the sadness.  Put on your hip waders and hold hands with someone.  Don't get lost in the bog.  On the shore, beckoning you, eventually, is your life.  And you will have it back.  It won't look like you remember.  It won't look like you thought it would on your wedding day, or the day your child was born.  But it also won't be as bad as you imagine it will be.  You will have friends...you will smile....you will find your new normal and it will be okay.  Just keep wading in that deep end and moving forward.  And if you squint really hard, you will see His hand held out for you.  It will seem sooooo far away at first.  He will look soooo tiny.  But the more you walk through that swamp...the more you put one foot in front of another....the more you just do the next thing in faith....the bigger He will get and the less distance there will be between you and Him.  And before you know it, you will be on the other side of that swamp - that grief - and you will see and know a bigger God than you ever thought possible.  Because you will realize that it was His strength that pulled you out of that mire - it was His will that tugged you out of that quicksand - and it is Him who waits on that shore of acceptance applauding your courage.   

I promise.

love,

Shawna