I just finished watching the last bit of the Osmonds 50th anniversary special on PBS.  And all I can say is......"aaaaaaaaahhhhhhhhhhhhhhhhhh."  Just my cup of tea!  You had to be in love with Donny as I was to truly appreciate.  Donny actually looks pretty well preserved for an old fogie.

Today, I am so happy to say, Cody did not have one single seizure.  I thought I was dreaming.  Dare I hope for one more?  On days like this, life seems too good to be true.  In the absence of seizures, I am so happy - so alive - so convinced that even with Cody's severe delay we can still live a fulfilling life with him.  In the presence of seizures, it is the total opposite.  So even for just this day, I am so thankful.  So grateful to see my little boy able to smile, engage, laugh, and be free for a time.  I pray for one more day like this tomorrow. 

A friend of mine (Amy) is always thinking of Cody and she's much more plugged in to the community and to autism opportunites than I am.  She emailed me about a T-ball team for special needs kids - that provides one on one support for each kid.  She said there's even a blind boy on it and his helper helps him bat - then picks him up and runs to first base with him!  That warmed my heart.  To know that there is a team out there where kids like Cody are given a chance to do things normal kids can do.  I don't think it's right for us right now - but in a year or two I do!  But I must say, it brought tears to my eyes picturing our games - not exactly what you bargain for as parents - sitting in the stands at your sons T-ball game.  Not exactly my dream for my son to have to be carried to first base.  And be restrained from eating rocks. 

But as I'm learning - this is my "new normal" and rather than feel sorry for us - I'm going to try to embrace these activities as a way for Cody to experience the world.  Still, it's hard.  One more loss.  Each season of life with Cody brings a fresh sense of loss - new things to grieve.  Speaking of grieving, I'm actually biting the bullett and getting Cody's hair cut this saturday.  He hasn't had a hair cut since he was born - and as you'll see in the coming video - his hair is LONG!  I love it - I call him my little Lord Fauntleroy.  But it's getting in the way and is getting a bit much.  Anyone who knows me well, knew not to even bring it up over the years.  Anyone who dared a "what's up with his hair?" or "when's he getting a haircut?" or "he looks like a girl!" learned quickly that they would get a steely stare from me and a sharp retort:  "he'll have his hair cut when I WANT HIM TO." 

What I never told them was the reason I've never cut it.  See.....Cody was born with that hair.  Those exact beautiful blond locks that have never been cut.  And for the first 6 months of his life he was totally and completely normal.  His hair is my link to that time - and that little boy.  It's a remembrance of a time when life was so much easier - and he was so full of innocence and glee - free of the prison of seizures.  His hair is an invisible thread back to the Cody I knew before epilepsy, hospitals, bedside vigils.  It's a connection to the healthy robust baby I knew and to a time long past when life seemed such a fairytale and so easy.  

Don't get me wrong, Cody is still my perfect little boy.  But in many ways he's kind of a shell of that robust, giggly little baby back then.  I accept him as he is.  I want him as he is.  But I have - on a subliminal level - felt like his hair was my last glimmer of the little boy he used to be.  Call me crazy - but that's just the way it is.  I guess, though, I'm ready to let go.  They say the last phase of the grieving process is "acceptance" and maybe this is a sign that I'm getting there.  His long hair just isn't practical - it gets in his eyes - it gets food in it - it's hard to wash.  So despite my attachment to it, I'm ready to let it go.  Can't say there won't be a few tears though!  And that's okay.  It will go in a keepsake box - perhaps a curl will be nestled in a locket to wear around my neck.  I will always treasure it.  But it's time to move on and embrace the Cody that I dearly love today.

On a lighter note, many people have asked me how the two boys function together - and I thought I'd show you.  Cody is pretty oblivious to Casey.  If I'm in the room, I can stay near Casey and just let Cody roam and he never really interferes with Casey.  Take a look at what I mean:

That's a day in the life of us!  I hang out in the living room with the boys - where everything is padded and Cody-proofed.  You can see on the video how Cody's eye contact is really hit and miss.  This is usually what he does a lot of the time - roams - picks up a toy and mouths it - roams some more - climbs on me.  I long for the day he will find a meaningful way to play with toys instead of just seeing them as chew toys. 

I've had lots of alone time with both boys this week - which can be stressful - but also lots of fun.  Just today I was remembering a line from "Chariots of Fire" - the lead character is a famous runner - and he expresses his passion for the sport by saying, "When I run, I feel God's pleasure."  I thought of that line - because I felt today the same way about being a mom.  When I'm "mothering" --- I feel God's pleasure.  There is no better thing to do.  And I know God sees every tear, every seizure, every broken dream.  I feel His pleasure when I rise at 5am with my boys - and try to face the day with a smile.  I feel His pleasure when I have their high chairs side by side and feed them at the same time.  I feel His pleasure when Cody has a seizure and I run to his side, sing to him, hold him, and pray for him.  Mothering - what a privelige.  On a day with no seizures - it is easy to feel giddy.

love, Shawna